logo Personal Health Passport

Secure personal health record

Forgot password?

Enter your email address and we'll send you a reset link.

We've sent a 6-digit code to your email address. Enter it below to complete sign in. Check your spam folder if it doesn't arrive within a minute.

Didn't receive it? Resend code

Choose a new password for your account.

Go to home
Personal Health Passport
🔍

✏️ Update Your Name

Your name will be updated on your account and in your Master Record (s1). The previous name will be noted in your record for clinical continuity.

📐 Unit Converter
📏 Height
ft in ⇌ cm
⚖️ Weight
st lb ⇌ kg
👤 Viewing 's passport as carer  
📅 Next Appointment:
EMERGENCY CONTACTS: 🏥 Hospital: 👤 NOK: 👤 NOK 2: 📞 999 · Set contacts in Section 2
🛡️
Battle Plan
Jump to your check-in day and keep your wellbeing momentum going.
📓 Daily Log Entry
📅 Add Appointment
— Select —▼
— Select —▼
💊 Add Medication
🏠 Homecare Nurse Visit
🩹 Stoma Bag Change
🩸 Blood Glucose Reading
🫁 COPD Exacerbation
🎯 Goal or intention
🙏 Grateful for / proud of
📝 How I was feeling
🏆 Win of the week
Back to Website Back to Website
Navigation
Section Index Section Index
Health Insights Dashboard Health Insights
Core
Master Record
Appointments
Medications
Contact Directory
Care Plan
Medical Conditions & Surgery
Clinical Timeline
Daily Clinical Logs Daily Logs
Calendar Hub Calendar Hub
⚖️ Weight Tracker
Battle Plan & Wellbeing ️ Battle Plan
Common & Seasonal Health Common & Seasonal Health
Condition-Specific
⚙️ Update my conditions
Allergies & Anaphylaxis Allergies & Anaphylaxis
Autoimmune & Rheumatology Autoimmune & Rheumatology
Blood & Haematology Blood & Haematology
Blood Glucose Monitoring Blood Glucose
Breaks & Fractures Breaks & Fractures
CFS/ME & Long COVID CFS/ME & Long COVID
Children's Health Children's Health
Cancer Care ️ Cancer Care
Carer Information Carer Information
Continence & Bladder/Bowel Continence & Bladder/Bowel
COPD & Sleep Support COPD & Sleep Support
Counselling & Therapy ️ Counselling & Therapy
Dementia & Memory Dementia & Memory
Depression, Anxiety & Mood Depression, Anxiety & Mood
Diabetes Management Diabetes
Digestive & GI Health ️ Digestive & GI Health
End of Life & DNACPR ️ End of Life & DNACPR
Frailty & Falls Prevention Frailty & Falls Prevention
Enteral Nutrition / TPN Enteral Nutrition
Eye & ENT / Sensory ️ Eye & ENT / Sensory
Heart Conditions ️ Heart Conditions
HIV & Immunology HIV & Immunology
Homecare Nurse Visit Log Homecare Visits
Kidney & Renal Kidney & Renal
Learning Disabilities Learning Disabilities
Line Infection History Line Infections
Liver Health Liver Health
Medical Cannabis Medical Cannabis
Men's Health ️ Men's Health
Migraine & Headache Migraine & Headache
Musculoskeletal & Pain Musculoskeletal & Pain
Mental Health & Crisis Mental Health & Crisis
Mental Health Expansion Mental Health Expansion
Physiotherapy Physiotherapy
Podiatry & Foot Health Podiatry & Foot Health
Rare & Complex Diseases Rare & Complex Diseases
Respiratory Health Respiratory Health
Skin Conditions Skin Conditions
Speech & Language Therapy ️ Speech & Language Therapy
Eating Disorders ️ Eating Disorders
Occupational Health Occupational Health
Stoma Care Stoma Care
Stroke & Neurological Stroke & Neurological
Thyroid & Endocrine Thyroid & Endocrine
Travel Health ️ Travel Health
Vascular & Lymphatic Vascular & Lymphatic
Oral & Dental Health Oral & Dental Health
Wound Care & Tissue Viability Wound Care & Tissue Viability
Women's Health Women's Health
Beta Tester Feedback Beta Feedback
Reference
Conditions A–Z Conditions A–Z
🩺 Symptoms A–Z
Symptoms A–Z Clinical Reference
Patient Summary & QR Export Patient Summary & Export
📖 User Guide ▼
Getting Started
Setup Wizard
Disclaimer
Health Insights Dashboard
Master Record & Allergies
Appointments
Medications
Contact Directory
Care Plan & Escalation
Medical History
Clinical Timeline
Daily Logs
Calendar Hub
Weight & BMI Tracker
Battle Plan
Common & Seasonal Health
Allergies & Anaphylaxis
Autoimmune & Rheumatology
Blood & Haematology
Blood Glucose
Diabetes Management
Heart Conditions
Kidney & Renal Health
Learning Disabilities
Liver Health
Stroke & Neurological Health
Breaks & Fractures
CFS/ME & Long COVID
Cancer Care
Carer Information
COPD & Sleep Support
Counselling & Therapy
Dementia & Memory
Depression, Anxiety & Mood
Digestive & GI Health
End of Life & DNACPR
Frailty & Falls Prevention
Eye & ENT / Sensory
Enteral / TPN Nutrition
HIV & Immunology
Homecare Visits
Line Infections
Men's Health
Migraine & Headache
Musculoskeletal & Pain
Mental Health & Crisis
Mental Health Expansion
Physiotherapy
Podiatry & Foot Health
Rare & Complex Diseases
Respiratory Health
Skin Conditions
Speech & Language Therapy
Eating Disorders
Occupational Health
Stoma Care
Thyroid & Endocrine
Travel Health
Vascular & Lymphatic
Oral & Dental Health
Wound Care & Tissue Viability
Medical Cannabis
Continence & Bladder/Bowel
Children's Health
Women's Health
Conditions A–Z
Symptoms A–Z
Clinical Reference Guide
Patient Summary & Export

Section Index

Your Passport

0%
Building your passport… Complete the steps below to get started.
  • ○
    Master RecordYour name, DOB, NHS number, blood type
  • ○
    Current MedicationsWhat you're taking — critical in A&E
  • ○
    Contact DirectoryEmergency contacts and next of kin
  • ○
    Care Plan & EscalationWhat to do when things go wrong
  • ○
    Medical Conditions & SurgeryYour full history
  • ○
    Generate your QRYour A&E handover in one scan

Fill in what you know — even a partially complete passport is far better than none.

Health Insights Dashboard
Health Insights Dashboard
Master Record & Allergies
Master Record & Allergies
Appointment Record
Appointment Record
Current Medications
Current Medications
Contact Directory
Contact Directory
Care Plan & Escalation
Care Plan & Escalation
Medical Conditions & Surgery
Medical Conditions & Surgery History
Clinical Timeline
Clinical Timeline
Daily Clinical Logs
Daily Clinical Logs
Calendar Hub
Calendar Hub
Weight & BMI Tracker
Weight & BMI Tracker
Common & Seasonal Health
Common & Seasonal Health
Allergies & Anaphylaxis
Allergies & Anaphylaxis
Autoimmune & Rheumatology
Autoimmune & Rheumatology
Blood & Haematology
Blood & Haematology
Blood Glucose Monitoring
Blood Glucose Monitoring
Breaks & Fractures
Breaks & Fractures
CFS/ME & Long COVID
CFS/ME & Long COVID
Children's Health
Children's Health
Cancer Care
Cancer Care
Carer Information
Carer Information
Continence & Bladder/Bowel
Continence & Bladder/Bowel
Counselling & Therapy
Counselling & Therapy
Dementia & Memory
Dementia & Memory
Depression, Anxiety & Mood
Depression, Anxiety & Mood
COPD & Sleep Support
COPD & Sleep Support
Diabetes Management
Diabetes Management
Digestive & GI Health
Digestive & GI Health
End of Life & DNACPR
End of Life & DNACPR
Frailty & Falls Prevention
Frailty & Falls Prevention
Eye & ENT / Sensory
Eye & ENT / Sensory
Enteral Nutrition / TPN
Enteral Nutrition Regime
Heart Conditions
Heart Conditions
HIV & Immunology
HIV & Immunology
Homecare Nurse Visit Log
Homecare Nurse Visit Log
Kidney & Renal
Kidney & Renal
Learning Disabilities
Learning Disabilities
Line Infection History
Line Infection History
Liver Health
Liver Health
Medical Cannabis
Medical Cannabis
Men's Health
Men's Health
Migraine & Headache
Migraine & Headache
Musculoskeletal & Pain
Musculoskeletal & Pain
Mental Health & Crisis
Mental Health & Crisis
Mental Health Expansion
Mental Health Expansion
Physiotherapy
Physiotherapy
Podiatry & Foot Health
Podiatry & Foot Health
Rare & Complex Diseases
Rare & Complex Diseases
Respiratory Health
Respiratory Health
Skin Conditions
Skin Conditions
Speech & Language Therapy
Speech & Language Therapy
Eating Disorders
Eating Disorders
Occupational Health
Occupational Health
Stoma Care
Stoma Care
Stroke & Neurological
Stroke & Neurological
Thyroid & Endocrine
Thyroid & Endocrine
Travel Health
Travel Health
Vascular & Lymphatic
Vascular & Lymphatic
Oral & Dental Health
Oral & Dental Health
Wound Care & Tissue Viability
Wound Care & Tissue Viability
Battle Plan & Wellbeing
Battle Plan
Women's Health
Women's Health
Conditions A–Z
Reference
Conditions A–Z
Symptoms A–Z
Reference
Symptoms A–Z
Patient Summary & QR Export
Export
Patient Summary & QR
Beta Tester Feedback
Beta
Tester Feedback
⚡
Your passport has a quick record only
Complete the full setup when you're ready to add all your conditions, medications, and clinical history.
📱
Your emergency summary is ready
Generate your QR code — any clinician can scan it for your full summary instantly.

🔗 Linked Passports

You have been granted carer access to the following Health Passports. Click to view or edit their passport.

➕
Been diagnosed with something new?
Run Setup again to add new sections to your passport — it only takes a minute.

🚨 Critical Alerts

Clinical alerts will appear here once saved in Section 1.

📊 Health Insights

A live view of your health trends, streaks, and AI-generated weekly observations.

Blood Pressure
—
Heart Rate
—
Blood Glucose
—
Current Weight
—

🔥 My Logging Streak

—
day streak
🏆 Personal Best!
0 of 7 days logged this week
M
T
W
T
F
S
S
💓 Vitals Trend (BP & HR)
💓
Start logging your vitals daily to see trends here.
⚖️ Weight & BMI
⚖️
Log your weight to track progress over time.
📈 Blood Glucose
📈
Log blood glucose readings to see your patterns here.
😴 Mood & Sleep
😴
Log mood and sleep in Daily Logs to unlock this chart.
🩺 Pain & Nausea
🩺
Track pain and nausea in Daily Logs.
💧 Daily Fluid Intake
💧
Log your daily fluid intake in Daily Logs to see your hydration trend.

🤖 AI Health Insights

Week of —
ℹ️ Important: These are observations generated from your own logged data. They are not medical advice. Always discuss any concerns with your care team.
❤️
Analysing your health data...
Start logging a few entries — even one or two days of data is enough to generate your first insights.

📅 Upcoming — Next 30 Days

No upcoming appointments in the next 30 days.
Chart

Master Record & Allergies

🆔 Patient Identification

Primary identification, diabetic/smoker status, and high-priority clinical warnings.

✓ Saved

⚠️ Clinical Alerts

✓ Saved

Contact Directory

📞 Clinical & Emergency Contacts

Direct contact details for specialist clinical teams and emergency family support.

Name / TeamRoleLocationPhone
✓ Saved

🚨 Emergency Banner Defaults

Choose your emergency contacts which appears in the orange emergency bar at the top of every page.

✓ Saved

💡 Understanding Your Contact Directory

Who to include and what each role means.

👥 Who to Include

  • GP (General Practitioner) — your family doctor, usually the first point of contact for most health concerns
  • Consultant — a senior hospital doctor who specialises in a particular area (e.g. gastroenterology, cardiology)
  • Specialist Nurse — a nurse with advanced training in a specific condition (e.g. TPN nurse, stoma nurse, diabetes nurse)
  • Homecare Team — nurses or carers who visit you at home to assist with clinical tasks
  • Pharmacist — can advise on medications, interactions, and side effects
  • Next of Kin (NOK) — your closest relative or chosen person, who may be contacted in an emergency
  • Carer / Support Person — someone who assists with your daily care, paid or unpaid
  • Social Worker — helps coordinate support services, housing, and benefits

🏥 Hospital Terms Explained

  • Outpatient — an appointment at a hospital clinic where you attend and go home the same day
  • Inpatient — when you are admitted to hospital and stay overnight
  • Day case — a procedure or treatment at hospital that does not require an overnight stay
  • Referral — when your GP or a doctor sends you to see another specialist
  • MDT (Multi-Disciplinary Team) — a group of different healthcare professionals who discuss your care together
  • Bleep / Pager number — an internal hospital contact number for reaching a specific clinician

✅ Tips for Your Contact Directory

  • Always include an out-of-hours or emergency number for your most critical contacts
  • Keep this section up to date — consultants and specialist nurses change
  • Include your homecare company's 24-hour helpline if you receive homecare
  • Add your nearest hospital's direct ward number if you are a frequent attender

Enteral Nutrition Regime

🥤 Enteral Nutrition Information

Enteral feed prescription, cycle timing, tube type, and clinical hardware inventory.

Prescription
Additives
Feed Rate
ml / hr
Vitamin Rate
ml / hr
Infusion Cycle
Pump Type
✓ Saved

🔗 Active Lines, Tubes & Drains

Record all current access lines, feeding tubes, and drains. Add a row for each one.

Type Location Date In Date Removed Notes
✓ Saved

💡 Information Hub

Add a line or tube above to see personalised information.

Line Infection History

🦠 Infection Record

TPN & Enteral Access

Record of Pathogens, Exit-Site Infections, and Microbiology.

Date Access Point Pathogen Symptoms Antibiotics
✓ Saved

🔒 Line Lock Log

A record of every line lock period — whether for a confirmed infection, a suspected infection, or a planned line rest. Saved entries are locked as read-only records. Use Edit to update or Delete to remove.

✏️ New Line Lock Entry

No line lock entries yet. Add the first entry above.

✓ Saved

ℹ️ What is a Line Infection?

Central lines (Hickman, PICC, Portacath) bypass the skin — the body's natural barrier — giving bacteria a direct route into the bloodstream. Even with careful care, infections can happen and are a known risk of long-term IV access, not a sign of carelessness.

Exit-Site Infection
Infection at the point where the line enters the skin. Usually causes redness, swelling, warmth, or discharge around the site. Often treated with antibiotics without removing the line.
Tunnel Infection
Infection tracking along the line under the skin. You may see a red line or feel tenderness above the exit site. More serious — often requires line removal to clear fully.
Bloodstream Infection (CRBSI/CLABSI)
Bacteria or fungi enter the bloodstream via the line. Can cause high fever, rigors (uncontrolled shaking), and feeling very unwell — especially during or after an infusion. Needs urgent treatment.
Why Record Your History?
Knowing which bugs have infected your line before helps doctors choose the right antibiotic immediately — without waiting for lab results. Your history could save hours in an emergency.
CRBSI / CLABSI — you may see these abbreviations in hospital letters. CRBSI = Catheter-Related Bloodstream Infection. CLABSI = Central Line-Associated Bloodstream Infection. They refer to the same type of infection defined slightly differently for clinical audit purposes.

⚠️ Recognising the Signs — When to Get Help

🟡 Contact your hospital team or homecare nurse today if you notice:
  • Redness, warmth, or swelling at the exit site or along the tunnel
  • Any discharge or crusting around the line entry point
  • Your dressing is lifting, wet, or soiled
  • Low-grade temperature (37.5°C–38°C) without an obvious cause
  • The line feels harder to flush than usual
  • General feeling of being more unwell than normal
🔴 Go to A&E or call 999 immediately if you have:
  • Temperature of 38°C or above — especially during or after an infusion
  • Rigors — sudden uncontrolled shaking or shivering
  • Feeling faint, confused, or very rapidly unwell
  • Rapid heart rate, difficulty breathing, or feeling clammy
  • Severe pain or extensive redness tracking away from the exit site
If in doubt, call 111 — tell them you have a central line and describe your symptoms. They will escalate appropriately.
PICC lines vs Hickman/Ports: PICC infections can present more subtly — arm aching, slight swelling, or mild temperature. Don't wait for a high fever before calling if something feels wrong with a PICC. Trust your instincts — you know your body.

🛡️ Prevention — Your Daily Line Care Checklist

🙌 Hand Hygiene
  • Wash hands with soap and water for at least 20 seconds before touching your line or any equipment
  • Use alcohol hand gel after washing if available
  • Never touch the line tip, bung, or connector without clean hands
  • Ask anyone else handling your line to wash their hands first
🔌 Connectors & Bungs
  • Swab the bung or needleless connector with a 70% alcohol wipe for 15 seconds before every access — then allow to dry fully (do not blow on it)
  • Change bungs and caps according to your homecare schedule — never reuse
  • Keep the end of the line clamped when not in use
  • Never leave the line open to air
🩹 Dressing Care
  • Check your dressing daily — it should be clean, dry, and fully stuck down
  • If the dressing is loose, wet, or visibly soiled, contact your homecare nurse for a change — do not leave it
  • Never get the dressing wet in the shower — use a waterproof cover
  • Do not pick at or peel back the edges
💉 Flushing & Infusions
  • Flush with saline before and after every infusion or medication, using a push-pause technique to create turbulence inside the line
  • Always check the infusion bag and giving set for cloudiness, particles, or leaks before connecting
  • Never rush a connection — take your time with each step
  • Report any resistance or pain during flushing to your nurse
When to tell your homecare nurse something looks off: Any change from your normal — new redness, different smell, extra tenderness, or a line that behaves differently — is worth mentioning at your next visit or by phone beforehand. Early contact prevents small problems becoming serious ones.
Not sure? Call your hospital's IV / nutrition team during hours, or 111 out of hours. Always mention that you have a central line — it tells the call handler to treat your call as higher priority.

Care Plan & Escalation

📋 Care Plan Overview

Your overall care goals, coordinator, and plan review dates.

✓ Saved

📝 Advance Care Decisions

Important decisions about your care preferences and treatment wishes.

✓ Saved

🚨 Escalation Plan

Who to contact and in what order when something goes wrong. Saved entries lock as read-only records — use Edit to update or Delete to remove.

✏️ Add Escalation Tier

No escalation tiers yet — add your first contact above.

✓ Saved

⚠️ Emergency Protocols

Condition-specific emergency instructions for first responders and carers.

Sepsis Protocol
Emergency Call
Additional Instructions
✓ Saved

💡 Understanding Your Care Plan

Plain-English explanations of the terms used in this section.

📋 Care Plan Terms

  • Care Coordinator — the named person responsible for overseeing and coordinating all aspects of your care. Often a specialist nurse or key worker.
  • Escalation Plan — a step-by-step guide of who to contact and when if your condition changes or worsens
  • Phlebotomy — blood tests. The frequency tells you how often your blood needs to be checked.
  • Sepsis Protocol — emergency instructions to follow if you show signs of serious infection. Sepsis is life-threatening and requires immediate action.

📝 Advance Care Decision Terms

  • DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) — a medical decision that CPR should not be attempted if your heart stops. This is a clinical decision made with you, not by you alone. It does not mean you will receive less care.
  • Advance Care Directive — a document where you record your wishes about future medical treatment, in case you are unable to communicate them yourself
  • Advance Decision to Refuse Treatment (ADRT) — a legally binding document where you refuse a specific treatment in advance
  • Preferred Place of Care — where you would like to be cared for if your condition deteriorates (e.g. at home, in a hospice)
  • LPA (Lasting Power of Attorney) — a legal arrangement where you appoint someone you trust to make decisions on your behalf if you lose the ability to do so. There are two types: Health & Welfare (medical decisions) and Property & Financial Affairs.

⚠️ Signs of Sepsis — Act Fast

If you have a central line, PICC, or any IV access, be aware of these warning signs:

  • Temperature above 38°C or below 36°C
  • Heart rate above 100 beats per minute
  • Shivering, feeling very cold, or rigors (uncontrollable shaking)
  • Confusion or feeling very unwell suddenly
  • Redness, swelling, or discharge around a line site

If in doubt — stop the feed, call your homecare team or 999 immediately.

Current Medications

💊 Medication List

Record all current medications, dosages, and administration routes.

Medication Dose Frequency Route Indication Prescriber Start Date Review Date
✓ Saved

⚠️ Drug Allergies & Reactions

Record any known drug allergies or adverse reactions. This information is critical for prescribers.

Drug / Substance Reaction Severity Date Noted
✓ Saved

🌿 OTC Medications & Supplements

Over-the-counter medicines, vitamins, and supplements. These can interact with prescribed medications — always tell your doctor what you take.

Name Dose Frequency Reason for Taking
✓ Saved

💡 Medication Safety Information

Important guidance on medication safety, side effects, and interactions.

⚠️ Common Side Effects to Watch For

  • Nausea / vomiting — common with antibiotics, iron, and metformin. Take with food where possible.
  • Dizziness / drowsiness — common with opioids, antihistamines, and blood pressure medications. Avoid driving.
  • Constipation — common with opioids and iron supplements. Ensure adequate fluid intake.
  • Diarrhoea — common with antibiotics. Consider probiotics. Contact your GP if severe.
  • Skin rash — may indicate allergy. Stop the medication and contact your GP or 111 immediately.
  • Unusual bruising or bleeding — may indicate blood thinning. Contact your GP urgently.
  • Mood changes — some medications (steroids, beta-blockers) can affect mood. Tell your doctor.

🔄 Drug Interaction Warnings

  • Warfarin interacts with many antibiotics, aspirin, and herbal supplements (especially St John's Wort).
  • Methotrexate interacts with NSAIDs (ibuprofen, naproxen) — can be dangerous.
  • MAOIs interact with many common medications and foods — always check with your pharmacist.
  • Grapefruit juice interacts with statins, some blood pressure medications, and immunosuppressants.
  • Supplements — iron, calcium, and magnesium can reduce absorption of antibiotics and thyroid medications.
  • Always tell every clinician and pharmacist all medications you take, including OTC and supplements.

✅ Medication Safety Tips

  • Never stop a prescribed medication without speaking to your doctor first.
  • Keep all medications in their original packaging with the label intact.
  • Store medications as directed — some require refrigeration.
  • Check expiry dates regularly and return expired medicines to a pharmacy.
  • Never share your prescribed medication with anyone else.
  • If you miss a dose, check the patient information leaflet — do not double up without advice.

Medical Conditions and Surgery History

📄 Brief Medical Summary

A short plain-English summary of your medical background. Written by you, for any clinician who needs to understand your history quickly.

✓ Saved

🩺 Medical Conditions

A record of diagnosed medical conditions. Include the date of diagnosis and the treating hospital or consultant where known.

DateCondition / DiagnosisStatusConsultant / HospitalNotes
✓ Saved

🏥 Hospital Admissions

A record of hospital admissions. Include the date, reason for admission, the hospital, and the outcome or discharge summary where known.

Date InDate OutReason for AdmissionHospital / WardOutcome / DischargeNotes
✓ Saved

🔪 Surgery History

A record of surgical procedures. Include the date, procedure name, and the hospital or surgeon where known.

DateProcedure / SurgeryHospital / SurgeonOutcome
✓ Saved

🏥 Other Significant Clinical Events

Hospital admissions, significant investigations, or other notable clinical events not covered above. Include dates and treating hospital or consultant where known.

DateClinical EventTypeHospital
✓ Saved

👨‍👩‍👧 Family Medical History

Hereditary or family conditions that may be relevant to your care. Include the relationship and condition.

RelationConditionAge of OnsetNotes
✓ Saved

💉 Immunisations & Vaccinations

Record of vaccinations received. Particularly important if you are immunocompromised or on immunosuppressant medication.

VaccineDate GivenNext DueGiven By
✓ Saved

💡 Why Medical History Matters

Understanding your medical history helps every clinician who cares for you make safer, better-informed decisions.

📋 What to Include

  • All diagnosed conditions, even if currently well-managed or resolved
  • All surgical procedures, including minor operations and endoscopies
  • Hospital admissions and significant investigations (CT scans, MRIs, biopsies)
  • Mental health diagnoses and episodes of care
  • Previous reactions to anaesthetic or surgical complications

👨‍👩‍👧 Why Family History Matters

  • Some conditions run in families — heart disease, diabetes, certain cancers, and autoimmune conditions
  • Family history can guide screening decisions and preventive care
  • Genetic conditions may affect treatment choices
  • Even if a relative was never formally diagnosed, symptoms or cause of death can be relevant

💉 Immunisations & Complex Patients

  • If you are on immunosuppressants, steroids, or biologics, some live vaccines may not be safe — always check with your doctor before having any vaccine
  • Annual flu vaccine is recommended for most complex health conditions
  • Pneumococcal vaccine is recommended if you are immunocompromised or have had your spleen removed
  • COVID-19 boosters may be recommended more frequently for high-risk patients

Appointment Record

📅 Appointments

Log all upcoming and past outpatient appointments. Include the date, hospital or clinic, consultant name, and specialty so nothing gets missed.

DateClinic / SpecialistTimeLocationReason
✓ Saved

📆 Appointment Calendar

Click any date to see the full day summary — appointments, nurse visits, vitals, and notes.

💡 Making the Most of Your Appointments

Tips and guidance for getting the most out of every appointment.

✅ Before Your Appointment

  • Write down your questions beforehand — it is easy to forget when you are in the room
  • Bring a list of all your current medications, including OTC and supplements
  • Bring this Health Passport — it gives clinicians an instant overview of your history
  • If you have had any new symptoms, note when they started and how often they occur
  • If possible, bring a trusted person with you for support and to help remember what is said

🏥 Appointment Types Explained

  • New consultation — your first appointment with a specialist to discuss a new concern or referral
  • Routine follow-up — a regular check-in to monitor your condition and review progress
  • Test results review — an appointment specifically to discuss the results of blood tests, scans, or other investigations
  • MDT (Multi-Disciplinary Team) meeting — a meeting where multiple specialists discuss your care together. You may or may not attend.
  • Pre-operative assessment — checks carried out before a planned operation to make sure you are fit for surgery

💬 During Your Appointment

  • Do not be afraid to ask your clinician to explain something again or in simpler terms — it is your right
  • Ask what happens next — who does what, and by when
  • If a new medication is prescribed, ask about side effects and interactions
  • Ask for a copy of any letters or results — you are entitled to them
  • If you disagree with a decision, you have the right to ask for a second opinion

📋 After Your Appointment

  • Record the appointment in this section straight away while it is fresh
  • Note any actions — yours and the clinician's
  • If you were referred on, chase it up if you have not heard within the expected timeframe
  • Update your medications section if anything was changed

Current Clinical Status

🗣️ What I Want You To Know

Write this in your own words. This is the first thing a clinician should read — the things you always have to repeat and are tired of explaining.

✓ Saved

📋 Current Status

A snapshot of where things stand right now.

✓ Saved

🔬 Active Investigations & Pending Procedures

Tests, scans, or procedures awaited, in progress, or with results pending. Saved entries lock as read-only records — use Edit to update or Delete to remove.

✏️ New Investigation / Procedure

No investigations recorded yet. Add the first entry above.

✓ Saved

⚠️ Current Concerns

Anything actively worrying you or your team right now. Saved entries lock as read-only records — use Edit to update or Delete to remove.

✏️ New Concern

No concerns recorded yet. Add the first entry above.

✓ Saved

📌 Key Clinical Dates

Important dates any clinician needs to know at a glance.

✓ Saved

🤝 How to Care for Me

Tell clinicians, paramedics, and nurses how to support you as an individual — your communication needs, what helps, and what makes things harder. This appears at the top of your emergency summary.

✓ Saved

💡 About This Section

How to use this section and why it matters.

🗣️ The Most Important Card

"What I Want You To Know" is the first thing any clinician — including A&E doctors — should read. Write it as if you are talking directly to someone who has never met you and has 30 seconds to understand your situation. Be specific. Include the things you always have to repeat and the mistakes that have happened before because someone didn't know.

📋 Keep This Section Up To Date

Unlike Section 6 (your medical history, which rarely changes), this section should be updated regularly — after any hospital admission, when a new investigation starts, or when your situation changes. Think of it as the back cover of your passport: the summary a clinician reads before opening the book.

Homecare Nurse Visit Log

🏢 Homecare Provider

Your homecare company details — quick reference without needing to search your contacts.

✓ Saved

🏠 Visit Log

Record each homecare nurse visit — date, times, nurse name, role, and tasks completed. Used to verify visit frequency and support continuity of care.

Date Arrived Departed Duration Nurse Name Role Tasks Completed
✓ Saved

🩹 Line Dressing & Site Check

Log each dressing change and site swab. Important for detecting early signs of infection.

Date Dressing Replaced? Swab Taken? Notes
✓ Saved

🩸 Blood Draw Log

Record of blood samples taken during homecare visits.

Date Bloods Taken Sent To
✓ Saved

📋 Nurse Notes

Notes from each visit — observations, concerns, or anything the nurse flagged.

Date Note
✓ Saved

📦 Stock Audit

Track supply levels checked during each visit so nothing runs out unexpectedly.

Date Stock Levels Items Noted / Actions
✓ Saved

💡 About Homecare Visits

What homecare nurses do and why keeping this log matters.

🏠 What Is a Homecare Nurse?

A homecare nurse visits you at home to carry out clinical tasks that would otherwise require a hospital or clinic visit. For TPN patients this typically includes connecting and disconnecting your feed, changing your line dressing, taking blood samples, and checking your central line site for signs of infection. They are a crucial link between you and your clinical team.

📋 Why Log Your Visits?

  • Provides a clear record for your clinical team of how often visits are happening
  • Helps identify if visits are being missed or if frequency needs to change
  • Creates an evidence trail if you need to raise a concern with your homecare provider
  • Dressing and swab logs help detect patterns in line site problems before they become infections
  • Stock audit records help prevent running out of critical supplies

⚠️ If a Nurse Doesn't Arrive

  • Call your homecare provider's main number immediately — use the out-of-hours number if outside business hours
  • If you are due a TPN connection and no nurse arrives, do not attempt to connect yourself without training — call your clinical team
  • Keep a record of missed visits — this is important information for your care coordinator

Blood Glucose Monitoring

📈 BG Record

Log your blood glucose readings here. Enter the date, time, reading, and when it was taken (e.g. before or after a meal). Readings entered in the Daily Log are automatically added here — just save this section to keep them.

🚨
Red Flag Range
Below 3.9 mmol/L or Above 12.0 mmol/L — escalate immediately.
Date Time BG (mmol/L) Timing Notes / Follow-up
✓ Saved

💡 Understanding Blood Glucose

Plain-English guidance on blood glucose monitoring — what the numbers mean and what to do.

🩸 What Is Blood Glucose?

Blood glucose (BG) is the amount of sugar in your blood, measured in millimoles per litre (mmol/L). Your body uses glucose as its main energy source. Keeping it within a healthy range is important — too high or too low can both cause serious problems.

👥 Who Needs to Monitor Blood Glucose?

  • Type 1 diabetes — the body produces no insulin; monitoring is essential every day
  • Type 2 diabetes — especially if on insulin or certain medications
  • Steroid users — steroids (e.g. prednisolone, dexamethasone) can significantly raise blood glucose even in people without diabetes
  • TPN / IV nutrition patients — TPN contains glucose which can cause glucose instability or steroid-like effects
  • Cancer patients — some treatments and steroids used alongside chemotherapy affect glucose levels
  • Anyone with a known glucose instability — including gestational diabetes or post-surgical glucose changes

📊 What Do the Numbers Mean?

  • 4.0 – 5.9 mmol/L — normal fasting range for most people
  • Under 7.8 mmol/L — normal up to 2 hours after eating
  • Below 3.9 mmol/L — hypoglycaemia (low blood sugar) — treat immediately
  • Above 10.0 mmol/L — hyperglycaemia (high blood sugar) — monitor closely and contact your team
  • Above 12.0 mmol/L — escalate immediately to your clinical team or call 111

Your clinical team may give you different target ranges — always follow their specific advice.

⬇️ Low Blood Sugar (Hypo) — Act Fast

Symptoms: shaking, sweating, confusion, dizziness, feeling very hungry, pale skin, fast heartbeat.

  • Take 15–20g of fast-acting carbohydrate — glucose tablets, a small glass of sugary drink, or 5 jelly babies
  • Wait 15 minutes and recheck
  • If still low, repeat — if unconscious or unable to swallow, call 999

⬆️ High Blood Sugar (Hyper)

Symptoms: thirst, frequent urination, tiredness, blurred vision, headache.

  • Drink plenty of water
  • Check if you have missed a medication or insulin dose
  • If above 12.0 mmol/L or you feel very unwell — contact your clinical team or call 111
  • If you are on a sliding scale or correction dose, follow your team's instructions

📈 Common Reasons for Fluctuations

  • Illness or infection — glucose often rises when the body is fighting infection
  • Steroids — even a short course can significantly raise levels
  • Missed medication or insulin
  • Changes to diet or feed rate
  • Stress or poor sleep
  • Starting or stopping TPN or enteral feed

Daily Clinical Logs

—

⚙️ Customise Your Daily Log

Choose which columns appear in your daily log. Tick only what you actually monitor — you don't need to track everything. Hit Save My Log Preferences when you're happy with your selection.

Always logged (core vitals): Blood Pressure, Heart Rate, O₂ Sat, Temperature, Respiratory Rate, Weight, Sleep hours, Fluid intake, Mood. The optional modules below add condition-specific columns — only tick what's relevant to you right now. You can change this at any time.

Resets columns to match your Setup Wizard selections
✓ Saved

📓 Daily Log

Daily clinical log for the current month. Enter each day's vitals and readings — the columns shown depend on which modules you have switched on above. Use the arrows to navigate between months. Save each month separately.

📖 What do these columns mean?
BPBlood Pressure — systolic/diastolic e.g. 120/80 mmHg. Normal range: 90/60–120/80.
HRHeart Rate — beats per minute. Normal resting: 60–100 bpm.
O2%Oxygen Saturation — % of blood carrying oxygen. Normal: 95–100%. Below 92% seek help.
Temp°CBody Temperature in Celsius. Normal: 36.1–37.2°C. Fever: above 38°C.
RRRespiratory Rate — breaths per minute. Normal adult: 12–20 breaths/min.
Wt kgBody Weight in kilograms. Log daily if monitoring fluid balance or nutrition.
Sleep hHours of sleep last night. Adults typically need 7–9 hours.
Fluid mlTotal fluid intake in millilitres. Typical daily target: 1500–2500 ml (varies by condition).
MoodMood score 1–10 (1 = very low, 10 = excellent). Helps track mental wellbeing trends.
BGBlood Glucose in mmol/L. Normal fasting: 4.0–5.4. Post-meal: below 7.8.
PainPain score 1–10 (1 = minimal, 10 = worst imaginable).
NauseaNausea score 1–10 (1 = none, 10 = severe). Log to spot patterns with medications or feeds.
UrineUrine output in ml over 24 hours. Normal adult output: 800–2000 ml/day.
BowelNumber of bowel movements in the day. Log consistency if monitoring stoma or GI condition.
Feed/IVEnteral feed or IV nutrition volume in ml for the day.
COPDPeak Flow in L/min. Compare to your personal best. Below 50% personal best — seek help.
StomaStoma output in ml. High output (>1500 ml/day) can cause dehydration — contact your team.
✓ Saved

📋 Timed Vitals Log

Use this log to record multiple readings throughout the day — as often as you need, whether that's once an hour or twice a day. Each entry is timestamped automatically when you add it. Covers blood pressure, heart rate, oxygen saturation, blood glucose, temperature, and pain. Save when done.

Date Time BP HR (bpm) O2 % BG mmol/L Temp °C Pain (0–10) Notes
✓ Saved

💡 Understanding Your Daily Log

The daily log is for any patient who needs to track their health over time — whatever your condition. You do not need to fill in every field every day. Even basic entries build a picture that helps you and your team.

📓 Why Keep a Daily Log?

A single reading tells you very little. A week of readings starts to show a pattern. A month of readings gives your clinical team something genuinely useful — they can see trends, spot early warning signs, and make better decisions about your care.

  • Bring this log to every GP or clinic appointment — it saves time and answers questions before they are asked
  • If you are admitted to hospital, a completed log gives the admitting team an instant picture of your recent health
  • Patterns you might not notice day-to-day become obvious when you look at a month at a glance
  • You do not need to fill in every column every day — even weight and temperature alone are valuable over time

⚙️ What the Optional Modules Are For

Switch on only the modules relevant to you. Each one adds extra columns to your daily log.

  • Tube Feed / IV Nutrition — Connect and disconnect times, feed volume (ml), feed rate (ml/hr), and pump status for anyone receiving enteral (tube) or parenteral (IV) nutrition.
  • Blood Glucose — For people with diabetes, on insulin, on steroids, or receiving IV/tube nutrition. Record readings in mmol/L.
  • Pain Score — Rate your pain 1–10. 1 = barely noticeable, 10 = worst imaginable. Useful for any chronic pain condition or post-surgery recovery.
  • Fluid Balance — Total fluid taken in (drinks, IV, tube feed) vs. total fluid out (urine, stoma, drains). Important for kidney conditions, heart failure, and IV nutrition patients.
  • COPD / Respiratory — Peak flow in litres per minute, SpO2 saturation reading, and an inhaler puff counter. Auto-enabled when COPD is set in your profile.
  • POTS / Dysautonomia — Side-by-side lying vs. standing heart rate comparison and a dizziness/syncope score (0–10). Auto-enabled if POTS is active in your Rare Diseases profile.
  • Stoma Output — Consistency of output from your stoma (colostomy, ileostomy, or urostomy). High output or sudden changes should be reported to your team.
  • Sleep — Hours slept. Poor sleep affects pain, mood, and recovery. Useful for anyone on medications that affect sleep, or with conditions like COPD or chronic pain.
  • Nausea / Vomiting — Nausea score (0–10) and number of vomiting episodes. Relevant for chemotherapy, GI conditions, post-surgery recovery, and medication side effects.
  • Urine Output — Volume of urine in ml. Low output can indicate dehydration or kidney problems. Important for anyone on IV fluids or with kidney or heart conditions.
  • Bowel — Number of bowel movements and Bristol Stool Score. Useful for IBD, IBS, bowel cancer recovery, and anyone on medications that affect bowel habit.

💩 Bristol Stool Chart — Quick Reference

The Bristol Stool Chart is a clinical tool used by doctors and nurses to describe stool consistency. If you use the Bowel module, enter the type number (1–7) that best matches.

Type Description What it means
Type 1Separate hard lumps, like nutsSevere constipation
Type 2Lumpy, sausage-shapedConstipation
Type 3Sausage shape with cracksNormal
Type 4Smooth, soft sausageIdeal
Type 5Soft blobs with clear edgesLacking fibre
Type 6Fluffy, mushy, ragged edgesMild diarrhoea
Type 7Entirely liquid, no solid piecesSevere diarrhoea

Types 3 and 4 are considered normal. Types 1–2 suggest constipation; types 6–7 suggest diarrhoea. Report persistent type 1–2 or 6–7 to your clinical team.

🚨 When to Contact Your Team

These are general thresholds — your team may give you different personal targets. Always follow their advice first.

  • Temperature above 37.5°C (or 38°C — check your escalation plan) — may indicate infection
  • Oxygen saturation below 94% — or below your personal baseline if you have a lung condition
  • Weight gain of 2 kg or more in 48 hours — possible fluid retention, contact your team the same day
  • Weight loss of more than 5% in 3 months without trying — report to your GP or dietitian
  • Blood glucose outside your target range — persistent hypos or hypers both need review
  • No urine output for 8+ hours — or significantly less than usual — may indicate dehydration or kidney problems
  • Nausea or vomiting preventing eating or drinking — especially if you are on medications that must be taken with food
  • Stoma: no output for 4–6 hours with abdominal pain — possible blockage, contact your stoma nurse or team
  • Any reading that concerns you — trust your instincts. You know your own body. If something feels wrong, contact your team.

Stoma Care Log

👩‍⚕️ My Stoma Nurse

Your first point of contact for any stoma concerns, bag changes, skin issues, or product queries.

✓ Saved

🩹 Bag Change Log

Log every bag change with a skin check, stoma appearance, output type, and any leak details.

Date Time Skin Sore/Red? Normal Pink? Output Type Leak? Leak Reason
✓ Saved

💡 Information Hub

🩹

Living with a Stoma

General guidance for stoma care and bag management

What is a Stoma?

A stoma is a surgically created opening on the abdomen that diverts the bowel or urinary tract to the outside of the body. The three most common types are a colostomy (from the colon), an ileostomy (from the small intestine, producing liquid output), and a urostomy (diverting urine). A stoma bag (pouch) is worn over the opening to collect output.

Bag Change — Step by Step
  1. Gather all supplies before you start: new bag, skin barrier/flange, scissors, soft wipes, warm water, and a disposal bag.
  2. Empty the bag fully before removing it — this reduces mess and makes removal easier.
  3. Gently peel the old bag from top to bottom, supporting the skin as you go. Never rip it off.
  4. Clean the skin around the stoma with warm water and a soft cloth or non-woven wipe. Avoid soap with moisturisers as it can prevent the new bag from sticking.
  5. Pat the skin completely dry — adhesion depends on dry, clean skin.
  6. Inspect the stoma (should be pink/red and moist) and the peristomal skin (should be intact and skin-coloured).
  7. Cut or mould the new flange to fit within 1–3 mm of the stoma edge to protect the skin without pressing on the stoma.
  8. Warm the adhesive flange in your hands for 30 seconds to improve adhesion, then apply from the bottom up, pressing firmly for 30–60 seconds.
  9. Dispose of the used bag sealed in a disposal bag — do not flush stoma bags down the toilet.
Skin Check — What to Look For
What You See What it Means Action
Pink and moist stomaHealthy — good blood supplyNo action needed
Slight bleeding when cleaningNormal — stoma tissue is delicateApply gentle pressure; settles quickly
Red, sore peristomal skinMoisture-associated skin damage or poor flange fitReview bag fit; use stoma powder on broken areas; contact stoma nurse
White/cream plaques on skinPossible fungal (Candida) infectionContact your stoma nurse for antifungal treatment
Purple/dark/black stomaReduced blood supply — seriousContact clinical team urgently
Stoma retracting below skinRetraction — bag may not seal wellContact stoma nurse; convex bags may help
Output Types — What's Normal?
Type Usual Stoma Type Notes
FormedColostomy (descending/sigmoid)Solid output, similar to normal stool — typically once or twice daily
MushyColostomy (transverse)Semi-solid; more variable frequency
LiquidIleostomyWatery/porridge consistency; high volume. Monitor closely for dehydration — aim for 1–1.5 L/day output. If over 2 L/day, contact your team.
Why Bags Leak — and How to Prevent It
  • Bag too full: Empty when one-third full — never let it get more than half full.
  • Poor flange fit: If the cut-out is too large, output contacts the skin and lifts the adhesive. Measure before every change.
  • Sweating: Use a barrier wipe / film before applying the flange; consider a belt accessory for exercise.
  • Creases or skin folds: Mouldable seals (rings or paste) fill uneven surfaces and prevent leaks at edges.
  • Applying to damp skin: Always pat completely dry before applying the new bag.
  • Stoma output during change: Consider timing bag changes when output is least (morning before breakfast for colostomies).
🚨 Contact Your Stoma Nurse or Go to A&E If:
  • The stoma turns dark purple, blue, or black — possible ischaemia
  • No output for more than 4–6 hours and the abdomen is cramping or bloated — possible blockage
  • Ileostomy output exceeds 2 litres in 24 hours — risk of dangerous dehydration
  • Persistent bright red bleeding from inside the stoma (not surface ooze when cleaning)
  • Signs of infection: fever, severe pain, swelling, or spreading redness around the stoma site
  • The stoma appears to be prolapsing (protruding more than usual)
This guidance is for general reference only. Always follow the personalised advice given by your stoma care nurse or clinical team.

⚔️ Battle Plan

Your Weekly Battle Plan
Three days. Three questions. One unstoppable you.

Living with a complex health condition is relentless — but so are you. The Battle Plan is your personal weekly ritual. Just pick one of your three power days, answer three simple questions, and record your win. No pressure. No perfection. Just showing up — and that alone is a victory.

🌅
Motivation Monday
Set your intention. Own the week.
🧘
Well-Being Wednesday
Check in with yourself. Recharge.
🚀
Fly-High Friday
Celebrate. Reflect. Soar.
✨ Choose Your Day to Begin
🌅
Motivation Monday
Start strong. Pick one goal that matters — no matter how small. Set the tone for your entire week with a single powerful intention.
🎯 My goal this week 🙏 What I'm grateful for 🏆 My win
Tap to check in →
🧘
Well-Being Wednesday
Pause mid-week and check in with yourself. Your feelings matter. Your self-care matters. How are you really doing today?
💚 Self-care focus 🙏 Gratitude moment 🏆 My win
Tap to check in →
🚀
Fly-High Friday
End the week on a high. Celebrate whatever you achieved — big or small. Reflect on the week and remind yourself life is still worth living to the fullest.
🌟 What lifted me 🙏 Proud moment 🏆 My win
Tap to check in →
✏️
Add Your Entry
Three things. Your words. Your journey.
📖
Your Journey So Far
Every entry is proof of your resilience. Click any row to view the full details.
Week Day Goal Grateful for Notes Win 🏆

💡 Click any entry to view full details. Entries are saved automatically when you click Save Entry above.

✓ Saved
🤝
Support & Signposting
You don't have to face this alone. Reach out — there is always someone ready to listen.

If you are struggling, please reach out. You do not have to face this alone. The services below may be able to help — and if one does not understand your situation, try another. Your experience is valid even when others don't have the words for it.

📞
Samaritans
Free, 24/7, confidential. Whatever you are going through.
Call: 116 123  |  jo@samaritans.org  |  samaritans.org
💬
Shout
Free crisis text line. If you can't talk, text.
Text SHOUT to 85258
🧠
Mind
Mental health information, advice and local support services.
Call: 0300 123 3393  |  mind.org.uk
🏥
NHS Talking Therapies
Refer yourself for free NHS talking therapies (IAPT) — no GP referral needed.
nhs.uk/mental-health/talking-therapies
💪
F.E.A.R — Face Everything And Rise
A charity arranging activities and experiences specifically for people on artificial nutrition — from watersports and sailing to skiing, holidays and days out. Proving that life on a tube is still a life worth living to the full.
faceeverything.co.uk
🩺
NHS 111
Free NHS helpline for urgent medical advice — 24/7, when it's not a 999 emergency.
Call: 111  |  111.nhs.uk

COPD & Sleep Support

💊 COPD & Respiratory Medications ● Live from Section 5

These are pulled live from your Section 5 Medications master list — filtered to inhaled and respiratory drugs. To add, edit or remove, go to Section 5. No double entry needed.

🩺 Which conditions apply to you?

Select all that apply — each condition will open its own panel below.

✓ Saved

🫁 Diagnosis & Severity

Record your COPD diagnosis details, severity stage, and smoking history.

Diagnosis Date
GOLD Stage
FEV1% Predicted
mMRC Dyspnoea Scale
CAT Score
Smoking Status
Pack-Years
Quit Date
Pulmonary Rehab
Respiratory Consultant
Next Review Date
✓ Saved

💨 Inhaler Technique & Notes

Use this table for inhaler technique notes, device types, and any details not captured in Section 5. For the medication list itself, use the live panel above.

Inhaler / Drug Type Dose Frequency Technique / Notes
✓ Saved

📊 Spirometry & Lung Function Log

Log spirometry results over time to track disease progression or response to treatment.

Date FEV1 (L) FVC (L) FEV1/FVC % FEV1% Pred. Notes
✓ Saved

⚠️ Exacerbation History

Log each flare-up. Spotting patterns (triggers, frequency) helps your team adjust your management plan.

Date Severity Trigger Treatment Hospitalised? Notes
✓ Saved

🚨 Rescue & Action Plan

Your personalised COPD action plan. Agree these steps with your respiratory nurse or GP and keep them up to date.

🟢 Green Zone — I feel well
🟡 Yellow Zone — Getting worse
🔴 Red Zone — Call 999 / A&E now
Rescue Antibiotics
Rescue Steroids
Emergency Contact 1
Emergency Contact 2
✓ Saved

😴 CPAP / NIV Device

Record your sleep therapy device settings. CPAP treats sleep apnoea (OSA); NIV/BiPAP treats hypercapnic respiratory failure in advanced COPD.

Device Type
Make & Model
Serial Number
Prescribed Pressure (cmH₂O)
IPAP (BiPAP only — cmH₂O)
EPAP (BiPAP only — cmH₂O)
Backup Rate (BiPAP ST — bpm)
Ramp Time
EPR / Flex Setting
Humidifier Setting
Mask Type & Size
Target Hours / Night
Last AHI Result (events/hr)
Last Compliance Download
Service Due Date
Supplier / Sleep Clinic
Filter & Consumable Schedule
Fine Filter
Tubing
Mask Cushion
Humidifier Chamber
✓ Saved

🟦 Oxygen Therapy

Record prescribed oxygen settings, delivery device and supplier details.

Prescribed?
Flow Rate
Hours Per Day
Delivery Device
Target SpO2
Supplier
Last Assessment Date
✓ Saved

😮‍💨 NIV / BiPAP — Clinical Details

NIV (Non-Invasive Ventilation) and BiPAP are used to support breathing when CO₂ builds up in the blood. Record your clinical targets, home ventilation team, and escalation plan here. Device settings (pressures, mask, etc.) are recorded in the Sleep Apnoea / CPAP panel.

Indication for NIV
When NIV Started
ABG pH Target
ABG PaCO₂ Target
Target SpO₂ on NIV
ABG Monitoring Frequency
Home Ventilation Service
Hospital / Service Name
HV Nurse / Coordinator
HV Contact Number
Next HV Clinic Date
✓ Saved

ℹ️ Information Hub — COPD & Sleep Support

🫁

Understanding COPD

Chronic Obstructive Pulmonary Disease — causes, stages, and what it means day to day

What is COPD?

COPD is a long-term lung condition that causes airflow obstruction, making it harder to breathe out fully. It includes chronic bronchitis (persistent airway inflammation and mucus) and emphysema (damage to the air sacs). It is usually caused by long-term exposure to irritants — most commonly cigarette smoke, but also pollution, dust, and chemicals. COPD cannot be cured but it can be managed effectively.

GOLD Stages Explained
Stage 1 — Mild
FEV1 ≥ 80% predicted. Symptoms may be minimal; often undiagnosed.
Stage 2 — Moderate
FEV1 50–79%. Breathlessness on exertion; most people seek help here.
Stage 3 — Severe
FEV1 30–49%. Significant impact on daily life; frequent exacerbations.
Stage 4 — Very Severe
FEV1 < 30%. Life-limiting; oxygen and NIV often required.
What is CPAP & Why It Helps

CPAP (Continuous Positive Airway Pressure) delivers a steady stream of air via a mask to keep your airway open during sleep. It is prescribed for Obstructive Sleep Apnoea (OSA) — a condition where the throat repeatedly collapses during sleep, causing you to stop breathing briefly and wake partially. OSA and COPD often occur together (called overlap syndrome), which significantly increases health risks if untreated.

NIV / BiPAP is used in more advanced COPD where CO₂ builds up in the blood (hypercapnic respiratory failure). It uses two pressures — a higher pressure on breathing in (IPAP) and a lower one on breathing out (EPAP) — to support your breathing, especially overnight.

Inhaler Technique Tips

Even the best inhaler won't work if the technique is wrong. Common mistakes to avoid:

  • Breathing in too fast (especially with MDIs — breathe in slowly and steadily)
  • Not shaking the inhaler before use (where required)
  • Forgetting to breathe out first before inhaling
  • Not holding your breath for 5–10 seconds after inhaling
  • Not rinsing your mouth after ICS inhalers (prevents oral thrush)
  • Using a spacer with MDIs dramatically improves drug delivery — ask your GP if you don't have one
Recognising an Exacerbation Early

An exacerbation is a sustained worsening of your symptoms beyond normal day-to-day variation. Act early — waiting makes it harder to treat at home. Warning signs:

  • Increased breathlessness beyond your usual level
  • Sputum changing in colour (yellow, green, brown) or increasing in amount
  • Wheezing more than usual
  • Feeling generally unwell, feverish, or unusually tired
  • Needing to use your reliever inhaler more often
Useful Contacts & Resources
📞
British Lung Foundation Helpline
0300 003 0555 — Mon–Fri 9am–5pm. Information, support and advice for people with lung conditions.
🌐
Asthma + Lung UK
asthma.org.uk — Comprehensive COPD guides, community forums, and local support groups.
🏥
NHS COPD Guide
nhs.uk/conditions/chronic-obstructive-pulmonary-disease-copd — Official NHS information including treatments and self-management.

🌿 Self-Management & Lifestyle

Breathing Techniques
👄 Pursed Lip Breathing

Breathe in slowly through your nose for 2 counts. Pucker your lips as if blowing out a candle. Breathe out slowly through pursed lips for 4 counts. Repeat. Slows breathing, reduces air trapping, and relieves breathlessness quickly.

🫃 Diaphragmatic Breathing

Place one hand on your chest, one on your belly. Breathe in through your nose — your belly should rise, not your chest. Breathe out slowly through pursed lips. Strengthens the diaphragm and reduces the work of breathing.

Positions That Ease Breathlessness
  • Forward lean (tripod position): Sit and lean forward slightly, resting hands on knees or a table. Opens the chest and lets the diaphragm move freely.
  • Standing lean: Stand and lean forward with hands on a wall or stable surface at hip height.
  • High side lying: In bed, lie on your side with head and shoulders raised on pillows. Avoids lying flat which can worsen breathlessness.
Pacing & Energy Conservation
  • Plan ahead — do demanding tasks when your energy is highest (usually mid-morning)
  • Sit down for tasks you normally do standing (ironing, food prep, brushing teeth)
  • Break tasks into smaller steps with rests in between
  • Keep frequently used items within easy reach
  • Use a wheeled trolley or bag to carry items rather than lifting
  • Avoid rushing — hurrying dramatically increases oxygen demand
Exercise & Pulmonary Rehab

Exercise is one of the most effective treatments for COPD — it won't harm your lungs and will improve breathlessness over time. Pulmonary rehabilitation (PR) is an NHS programme of exercise and education specifically for people with COPD. Studies show PR reduces hospital admissions and dramatically improves quality of life. Ask your GP for a referral if you haven't attended.

For day-to-day activity: aim for short walks at a gentle pace, building up gradually. Even 10 minutes daily makes a difference. Carrying a small pulse oximeter and monitoring your SpO₂ during activity can help you find a safe level.

Diet & Nutrition

COPD increases the energy cost of breathing — you can burn significantly more calories just breathing than someone without the condition. Malnutrition worsens muscle weakness and makes breathlessness harder to manage.

  • Eat small, frequent meals — a large meal pushes the diaphragm up and worsens breathlessness
  • Avoid very gassy foods (beans, carbonated drinks) which can cause bloating and restrict breathing
  • Choose calorie-dense snacks if weight loss is a concern (nuts, full-fat dairy, avocado)
  • Stay well hydrated — it helps thin and clear mucus
  • Rest before eating if you're breathless — breathlessness increases the effort of eating
Avoiding Triggers
  • Cold air: Breathe through a scarf or buff in cold weather; breathe in through the nose to warm air before it reaches the lungs
  • Infections: Get your annual flu jab and COVID booster; stay up to date with the pneumococcal vaccine; avoid crowded indoor spaces when respiratory viruses are circulating
  • Smoke & pollution: Check local air quality (UK Air app / DEFRA); avoid outdoor exercise on high pollution days
  • Indoor irritants: Aerosol sprays, strong cleaning products, paint fumes, open fires, and gas cookers can all worsen symptoms
  • Stress: Anxiety tightens the chest and increases breathing rate — breathlessness can cause anxiety and anxiety can cause breathlessness. Pursed lip breathing and the tripod position can break this cycle.
CPAP Adherence Tips
  • Getting used to the mask: Wear it for short periods during the day (e.g. watching TV) before using it overnight. Your brain needs time to accept the sensation.
  • Mask leak: Try adjusting the headgear — over-tightening usually makes leaks worse. If the mask shape doesn't suit your face, ask your sleep clinic to try a different style.
  • Dry mouth / throat: Increase humidifier temperature or level; make sure the heated tube (if fitted) is enabled; try a chin strap if your mouth falls open.
  • Claustrophobia: Try a nasal pillow mask (smallest footprint). Use the ramp feature to start at low pressure and let it build gradually.
  • Cleaning schedule: Mask cushion — rinse daily in warm soapy water, allow to air dry. Tubing — wash weekly. Humidifier chamber — wash weekly with white vinegar solution. Filter — check monthly.
  • When to contact your sleep clinic: AHI consistently above 5 on your app, new or returning symptoms of OSA (snoring, witnessed apnoeas, morning headaches, excessive daytime sleepiness), mask no longer fitting after weight change, or device fault.

🌙 My Insomnia Record

✓ Saved

💊 Insomnia Treatment

✓ Saved

🛏️ Sleep Hygiene

✓ Saved

💡 Insomnia — Information Hub

What Is Chronic Insomnia?

Insomnia means having persistent difficulty falling asleep, staying asleep, or waking too early — at least 3 nights per week for 3 months or more, despite having adequate opportunity to sleep. It is not just "a bad night" — it is a diagnosable condition that responds well to the right treatment.

CBT-I — The Gold Standard Treatment

Cognitive Behavioural Therapy for Insomnia (CBT-I) is recommended by NICE as the first-line treatment — more effective than sleeping tablets in the long run. It works by changing the thoughts and behaviours that perpetuate insomnia.

  • Sleep restriction therapy: Temporarily limits time in bed to match actual sleep time, building sleep pressure and improving sleep efficiency. Counterintuitive but very effective.
  • Stimulus control: Reassociates the bed with sleep only — not lying awake, not watching TV, not using your phone.
  • Cognitive restructuring: Challenges unhelpful thoughts like "I must get 8 hours or I can't function."
  • Relaxation techniques: Progressive muscle relaxation, breathing exercises, imagery.

CBT-I is available via Sleepio (NHS-funded in some areas), IAPT mental health services, and specialist sleep clinics.

Why Sleeping Pills Are Short-Term Only

Medications like zopiclone and zolpidem are only licensed for 2–4 weeks. With regular use, they stop working as well (tolerance), and stopping them can cause rebound insomnia. They do not fix the underlying pattern — CBT-I does.

Melatonin is safer for longer use and particularly helpful for circadian rhythm problems (shift work, jet lag, delayed sleep phase). Daridorexant (Quviviq) is a newer option for up to 12 months.

When to See Your GP

  • Insomnia lasting more than 4 weeks
  • Significantly affecting work, mood, relationships or daily function
  • Symptoms of sleep apnoea (snoring, choking awake, witnessed pauses in breathing)
  • Restless legs or periodic limb movement disturbing sleep
  • Insomnia driven by depression, anxiety or chronic pain — treat the root cause

Useful Resources

  • Sleepio — digital CBT-I programme (sleepio.com) — NHS-funded in some areas
  • NHS Sleep Scotland — free CBT-I programme (nhsinform.scot)
  • The Sleep Charity — thesleepcharity.org.uk
  • NICE guideline NG238 — Insomnia in adults

Narcolepsy

Medication

Specialist & Clinic

✓ Saved

ℹ️ Information Hub — Narcolepsy

What is narcolepsy? Narcolepsy is a long-term neurological condition that affects the brain's ability to regulate sleep–wake cycles. People with narcolepsy experience excessive daytime sleepiness and may fall asleep suddenly at any time.

  • Type 1 — Narcolepsy with cataplexy (sudden muscle weakness triggered by strong emotion). Associated with loss of hypocretin-producing cells in the brain.
  • Type 2 — Narcolepsy without cataplexy. Hypocretin levels are usually normal.
  • ESS score — The Epworth Sleepiness Scale measures daytime sleepiness. Score 11+ indicates excessive sleepiness; 16+ indicates severe.
  • Sodium Oxybate (Xyrem) — A controlled drug taken at night to improve night-time sleep quality and reduce cataplexy. Requires specialist initiation.
  • DVLA — You must notify the DVLA if you have narcolepsy. Your licence may be revoked until symptoms are well controlled. Driving without notifying DVLA is illegal.

Useful resources:

  • Narcolepsy UK — narcolepsy.org.uk
  • NHS Narcolepsy — nhs.uk/conditions/narcolepsy
  • DVLA guidance — gov.uk/narcolepsy-and-driving

Hypersomnia

Kleine-Levin Syndrome (KLS) Details

Medication

Specialist & Clinic

✓ Saved

ℹ️ Information Hub — Hypersomnia

What is hypersomnia? Hypersomnia means sleeping too much or feeling excessively sleepy during the day despite adequate night-time sleep. It can be primary (no identified cause) or secondary (caused by another condition or medication).

  • Idiopathic Hypersomnia (IH) — excessive daytime sleepiness with no identifiable cause. People often feel unrefreshed even after long sleep and experience "sleep drunkenness" (difficulty waking).
  • Kleine-Levin Syndrome (KLS) — a rare episodic disorder. Episodes last days to weeks with extreme sleepiness (sleeping 16–20 hours/day), confusion, and sometimes abnormal behaviour. Between episodes the person is completely normal. More common in adolescent males.
  • Secondary hypersomnia — caused by another condition (e.g. brain injury, MS, hypothyroidism) or medications (e.g. opioids, antihistamines, antidepressants).
  • Modafinil — a wakefulness-promoting agent used to treat IH and narcolepsy. Not licensed for KLS but sometimes tried.
  • Lithium (KLS) — may reduce episode frequency in KLS when used as a preventative.

Useful resources:

  • KLS Foundation — klsfoundation.org
  • NHS — Hypersomnia — nhs.uk (search "hypersomnia")
  • The Sleep Charity — thesleepcharity.org.uk

Women's Health

Women's Health Topics

Tick the topics relevant to you — a tab will appear for each one. Tick as many as you need.

✓ Saved

🩸 Menstrual Health

✓ Saved

💊 Menstrual Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Menstrual Health — Information Hub

Endometriosis

Endometriosis affects around 1 in 10 women. Tissue similar to the womb lining grows outside the uterus — on ovaries, fallopian tubes, bowel, and bladder. It responds to hormones each cycle, causing inflammation, scarring, and often severe pain.

Symptoms: Painful periods (dysmenorrhoea), pain during sex (dyspareunia), pelvic pain throughout the cycle, painful bowel movements or urination during a period, fatigue, and difficulty conceiving.

Treatment: Hormonal suppression (combined pill, progestogen-only pill, Mirena IUS, GnRH analogues — e.g. Prostap), laparoscopic surgery (excision or ablation of deposits), pain management (NSAIDs, co-codamol). There is no cure — treatment manages symptoms.

Polycystic Ovary Syndrome (PCOS)

PCOS affects 1 in 10 women and is the most common hormonal condition in women of reproductive age. Diagnosis requires 2 of 3 criteria (Rotterdam): irregular/absent periods, raised androgens (clinical or biochemical), polycystic ovaries on ultrasound.

Features: Irregular or absent periods, acne, excess hair growth (hirsutism), thinning scalp hair, weight gain, difficulty conceiving. Long-term risks include type 2 diabetes and endometrial cancer (due to unopposed oestrogen from irregular cycles). Management: Combined pill (regulates cycle, reduces androgens), metformin (insulin resistance), lifestyle (weight loss restores ovulation in many), clomifene or letrozole for fertility.

Heavy Menstrual Bleeding (HMB / Menorrhagia)

Defined as blood loss ≥80mL per cycle, or bleeding that significantly impacts quality of life. Common causes: fibroids, adenomyosis, PCOS, endometrial polyps, or no identifiable cause (dysfunctional uterine bleeding).

Treatment options (NICE CG44): First-line — Mirena IUS (most effective medical treatment). Also: tranexamic acid (reduces loss by ~50%), NSAIDs, combined pill, norethisterone. Surgical options: endometrial ablation, myomectomy (for fibroids), hysterectomy.

Premenstrual Syndrome (PMS) & PMDD

PMS affects up to 40% of women — physical and emotional symptoms in the luteal phase (days 14–28) that resolve with menstruation. PMDD (Premenstrual Dysphoric Disorder) is a severe form causing disabling mood symptoms. Management: SSRIs (continuous or luteal-phase dosing — first-line for PMDD), combined pill (Yasmin/Eloine — drospirenone-containing), CBT. Referral to specialist PMS clinic if severe.

🔬 Cervical Screening (Smear Test)

NHS cervical screening is offered every 3 years (ages 25–49) and every 5 years (ages 50–64). It checks for HPV and cell changes — it is not a cancer test.

✓ Saved

📋 Cervical Screening History

DateResultFollow-upClinic / GPNotes
✓ Saved

💊 Cervical Screening — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Cervical Screening — Information Hub

How NHS Cervical Screening Works

The NHS Cervical Screening Programme uses HPV primary screening. A sample of cells is taken from the cervix (smear). If high-risk HPV is detected, the sample is checked for abnormal cells. If HPV is not found, no further action is needed until the next routine screen.

AgeFrequency
25–49Every 3 years
50–64Every 5 years
65+Only if recent abnormal results
Understanding Results

HPV not detected: Routine recall at next screening interval — no further action.
HPV detected, no abnormal cells: Repeat smear in 12 months.
HPV detected + abnormal cells (CIN1/2/3): Referred for colposcopy.

CIN grading: CIN1 — mild changes, often clear spontaneously (watchful waiting). CIN2 — moderate changes, usually treated. CIN3 — severe changes (pre-cancer), always treated. CIN is NOT cancer — it means cells that could potentially develop into cancer if left untreated.

Colposcopy & Treatment

Colposcopy is a closer examination of the cervix using a magnifying instrument. A biopsy may be taken. Treatment for CIN2/3: LLETZ (Large Loop Excision of the Transformation Zone) — removes abnormal tissue under local anaesthetic, takes ~15 minutes. LLETZ is both diagnostic and curative in most cases. Follow-up smear at 6 months post-treatment, then annual for up to 10 years depending on result.

HPV Vaccination

The NHS HPV vaccine (Gardasil 9) is offered to all Year 8 pupils (aged 12–13). It protects against HPV types 16, 18 (cause ~70% of cervical cancers), 31, 33, 45, 52, 58, and types 6 & 11 (genital warts). Vaccination does not replace screening — vaccinated women must still attend cervical screening.

🎀 Breast Health

NHS breast screening (mammogram) is offered every 3 years from age 50–71. If you have a family history of breast cancer, you may be offered earlier screening.

✓ Saved

📋 Breast Screening History

DateTypeResultAction TakenNotes
✓ Saved

💊 Breast Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Breast Health — Information Hub

NHS Breast Screening (Mammography)

NHS breast screening is offered every 3 years to women aged 50–71. Mammograms detect cancers too small to feel. Around 1 in 25 women screened are recalled for further assessment — most of these do NOT have cancer. Recall for further imaging (ultrasound, magnification views, biopsy) is not a diagnosis.

Women at higher risk (family history, BRCA gene) may be offered annual mammograms and/or MRI from age 30–40, arranged via a Familial Breast Cancer clinic.

BRCA Gene Mutations

BRCA1 and BRCA2 are tumour suppressor genes. Pathogenic variants significantly increase lifetime risk: BRCA1 — ~72% lifetime risk of breast cancer, ~44% ovarian cancer. BRCA2 — ~69% breast cancer, ~17% ovarian cancer (also increases male breast and prostate cancer risk).

Management options: Increased surveillance (annual MRI/mammogram), chemoprevention (tamoxifen or raloxifene), risk-reducing mastectomy (~90% risk reduction), risk-reducing salpingo-oophorectomy (also reduces ovarian cancer risk). Genetic counselling is offered before and after testing.

Breast Cancer — Key Facts

Breast cancer is the most common cancer in the UK — around 1 in 7 women will be diagnosed. Most (80%) are oestrogen-receptor positive (ER+) and respond to hormonal treatment (tamoxifen, aromatase inhibitors). Survival has improved dramatically — 85% survive 10+ years. HER2-positive and triple-negative cancers require targeted treatments (trastuzumab/Herceptin, chemotherapy).

Breast Self-Examination

Check breasts monthly — look and feel for: a new lump or thickening (especially if only on one side), change in size, shape, or outline, skin changes (dimpling, puckering, redness), nipple changes (inversion, discharge, rash), or pain in one area. Report anything new to your GP promptly — don't wait for your next screening appointment.

🏥 Gynaecological History

✓ Saved

📋 Gynaecological Procedures & Surgery Log

DateProcedureHospitalSurgeonOutcomeNotes
✓ Saved

💊 Gynaecological Conditions — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Gynaecological Conditions — Information Hub

Uterine Fibroids

Non-cancerous growths within the muscle of the uterus. Found in up to 70% of women by age 50, though most cause no symptoms. More common in Black women (who also tend to present at a younger age with more severe symptoms).

Symptoms: Heavy/prolonged periods, pelvic pain or pressure, urinary frequency, bloating, fertility problems (depending on location). Treatment: Watchful waiting (if asymptomatic), Mirena IUS, ulipristal acetate (Esmya — note MHRA restrictions), uterine artery embolisation (UAE), myomectomy (removes fibroids, preserves uterus), hysterectomy.

Adenomyosis

The endometrial tissue (womb lining) grows into the muscle wall of the uterus. Causes a bulky, tender uterus. Symptoms mirror endometriosis: heavy painful periods, pelvic pain throughout the cycle. Often coexists with endometriosis. Definitive diagnosis is histological (from hysterectomy), though MRI is highly suggestive. Management: Hormonal suppression (Mirena IUS most effective), GnRH analogues, or ultimately hysterectomy.

Ovarian Cysts

Most ovarian cysts are functional (related to the normal ovulation cycle) and resolve spontaneously within 1–3 months. Persistent, large, or complex cysts require further assessment.

Risk of malignancy index (RMI) guides management. Benign-appearing cysts <5cm in premenopausal women: repeat ultrasound in 3 months. Suspicious features (solid areas, septations, bilateral, ascites): urgent 2-week wait gynaecology referral. Emergency: Sudden severe abdominal pain may indicate ovarian torsion — go to A&E immediately.

Pelvic Floor Dysfunction

Affects up to 1 in 3 women. Includes: stress urinary incontinence (leaking on coughing/sneezing/exercise), urgency incontinence (overactive bladder), pelvic organ prolapse (bladder, uterus, or bowel descending into the vaginal canal). Treatment: Pelvic floor physiotherapy (first-line for most), bladder training, pessaries (for prolapse), surgical repair. Pelvic floor exercises (Kegels) are effective if done correctly — a physiotherapist can assess and teach proper technique.

🌼 Fertility & Pre-Conception

Complete this section if you are trying to conceive or have had fertility investigations or treatment.

✓ Saved

💊 Fertility & Pregnancy — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Fertility & Pre-Conception — Information Hub

Female Fertility — Key Investigations

AMH (Anti-Müllerian Hormone): Indicates ovarian reserve (the pool of remaining eggs). Can be measured at any point in the cycle. Low AMH suggests diminished reserve — relevant for IVF planning. Does not predict ability to conceive naturally.

Day 21 progesterone: Confirms ovulation has occurred (level >30 nmol/L is considered ovulatory in a 28-day cycle — adjust for cycle length).

HSG (Hysterosalpingography): X-ray with dye to check the uterine cavity and fallopian tubes for blockages. Performed as an outpatient procedure. Some women find it painful — take ibuprofen beforehand.

IVF — How It Works

In-Vitro Fertilisation (IVF) involves: ovarian stimulation (gonadotrophin injections, ~10–14 days), egg collection (under sedation), fertilisation in the laboratory, embryo culture (3–5 days), and embryo transfer (fresh or frozen). NHS funding criteria vary by CCB/ICB — typically offered to women under 40 after 2 years of trying, up to 3 cycles.

Success rates (HFEA 2022): Under 35 — ~32% live birth rate per embryo transfer. 35–37 — ~25%. 38–39 — ~19%. 40–42 — ~11%. 43–44 — ~5%.

Pre-Conception Advice

Start folic acid 400mcg daily at least 3 months before trying to conceive (5mg daily if previous NTD, on antiepileptics, diabetic, or BMI >30). Stop smoking and limit alcohol. Review all medications with your GP — some are teratogenic (methotrexate, warfarin, ACE inhibitors, valproate). Achieve a healthy BMI (19–30) if possible — obesity significantly reduces fertility and increases pregnancy complications. Ensure rubella immunity is confirmed before conception.

🧬 IVF & Assisted Conception

IVF and fertility treatment are physically and emotionally gruelling. This record keeps everything in one place — cycles, outcomes, what's in storage — so you never have to piece it together from memory during an already difficult time.

Clinic & Team
Diagnosis & Treatment Type
Cycle Log — one row per cycle, add as many as needed
Type Start Date NHS/Private Eggs Collected Fertilised Blastocysts Transfer Date Outcome Notes
Frozen Embryos in Storage
Complications & Side Effects
✓ Saved

📚 IVF & Assisted Conception — Information Hub

The IVF Journey — Step by Step

1. Ovarian stimulation (10–14 days): Daily self-injections of gonadotrophin hormones stimulate the ovaries to produce multiple follicles. Regular monitoring scans and blood tests track progress. The dose may be adjusted as you respond.

2. Egg collection: Done under sedation or light general anaesthetic. A fine needle guided by ultrasound passes through the vaginal wall to aspirate follicles. Takes 20–30 minutes. Cramping and spotting are normal afterwards. Rest is advised for the remainder of the day.

3. Fertilisation: Eggs and sperm are combined in the laboratory (IVF) or a single sperm is injected directly into each egg (ICSI). The lab will call the next day with a fertilisation report. Not all eggs will fertilise — this is normal.

4. Embryo development: Embryos are cultured for 3–6 days. Many clinics culture to blastocyst stage (day 5–6) as this allows better embryo selection. Not all fertilised eggs will reach blastocyst — further attrition at every stage is expected and normal.

5. Embryo transfer: One (or occasionally two) embryos are placed in the uterus via a thin catheter — similar to a smear test. No anaesthetic needed. Remaining suitable embryos are frozen (vitrified) for future use.

6. The two-week wait: The hardest part for most people. Progesterone support (pessaries, injections, or gel) is taken to support implantation. A pregnancy test is taken 9–14 days after transfer. This period can be intensely anxious — this is a completely normal response to an incredibly high-stakes wait.

IVF vs ICSI — What's the Difference?

IVF: Eggs and sperm are placed together in a dish and fertilisation happens naturally. Used when sperm quality is sufficient and there are no fertilisation failure concerns. ICSI: A single sperm is selected and injected directly into each egg using a micro-needle. Used for male factor infertility, previous fertilisation failure, low egg yield, or frozen/surgically retrieved sperm. ICSI does not improve pregnancy rates over IVF when sperm quality is normal — it is not automatically "better."

NHS Funding — What You're Entitled To

NICE guidelines recommend up to 3 full cycles of IVF on the NHS for women under 40 who have been trying to conceive for 2 years (or 12 failed IUI cycles). Women aged 40–42 may be offered 1 cycle if certain criteria are met. In practice, NHS funding varies enormously by ICB (Integrated Care Board) — some areas fund 3 cycles, others fund 1 or none.

A frozen embryo transfer (FET) using embryos created during a funded cycle is usually also funded. Check your local ICB policy or ask your GP for a referral to a fertility clinic for a funding assessment. Fertility Network UK (fertilitynetworkuk.org) provides up-to-date local funding information.

OHSS — Ovarian Hyperstimulation Syndrome

OHSS occurs when the ovaries over-respond to stimulation — fluid leaks from blood vessels into the abdomen. Mild OHSS (bloating, mild discomfort) is common and self-limiting. Severe OHSS (breathing difficulty, severe abdominal pain, reduced urination, rapid weight gain) is rare but serious — seek urgent medical attention.

Risk factors: PCOS, previous OHSS, young age, low AMH (paradoxically — very high response possible), large number of follicles. In high-risk women, clinics may freeze all embryos (freeze-all cycle) and transfer in a later natural or medicated FET cycle — this completely prevents severe OHSS.

Coping with Failed Cycles & Pregnancy Loss

A negative IVF result is a genuine bereavement — not an overreaction. The grief is real, the loss is real, and the physical and hormonal crash after a failed cycle is real. There is no right way to feel. You do not need to "stay positive" or "stay strong." Allow yourself to grieve.

Miscarriage after IVF is not more common than natural conception — the rates are similar. But it can feel more devastating when so much effort, money, and hope went into getting there. The Miscarriage Association (miscarriageassociation.org.uk, 01924 200799) offers support specifically for loss after fertility treatment.

Support resources: Fertility Network UK (fertilitynetworkuk.org) — patient charity, forums, local groups. Infertility Network UK helpline: 0800 008 7464. The Fertility Counsellors Register (BICA) can help find a specialist fertility counsellor. Many clinics offer counselling as part of treatment — you are entitled to ask for it.

Frozen Embryo Storage — What You Need to Know

Embryos can be stored for up to 55 years under UK law (extended from 10 years in 2022 — HFEA amendment). Annual storage fees apply — typically £200–£400/year at private clinics. NHS clinics may cover storage costs during the funded treatment period.

Important: You will be asked to renew consent annually. If you do not renew, the clinic must contact you before taking any action. Keep your contact details up to date with your storage clinic. If your relationship status changes (separation, divorce), both partners' consent may be required to use the embryos — discuss this with your clinic in advance.

🤰 Maternity — Current Pregnancy

Complete if currently pregnant. Leave blank if not applicable.

G total pregnancies
P live births
✓ Saved

🖥️ Maternity — Scans & Screening

✓ Saved

📅 Maternity — Antenatal Appointments

NHS schedule: booking (8–12wks), 16wks, 20wks scan, 25wks, 28wks, 31wks, 34wks, 36wks, 38wks, 40wks, 41wks. High-risk pregnancies may have additional consultant appointments.

✓ Saved

📋 Maternity — Birth Plan & Preferences

Your preferences for labour and birth. Share this with your midwife and birth partner. If you have complex medical needs (e.g. TPN, central line), note these clearly so all staff are aware.

✓ Saved

📚 Maternity & Pregnancy — Information Hub

Antenatal Screening — What Tests Mean

Combined screening (11–14 weeks): NT ultrasound + blood tests (PAPP-A, free beta-hCG) — calculates risk of trisomy 21 (Down's), 18 (Edwards'), and 13 (Patau's). A high-risk result (typically >1:150) is offered diagnostic testing.

NIPT (Non-Invasive Prenatal Testing): Analyses cell-free foetal DNA in maternal blood. Highly accurate (>99% sensitivity for T21) but is a screening test, not diagnostic. Available via NHS (England 2023) following high-risk combined screening result, or privately.

Diagnostic tests: Amniocentesis (16+ weeks) or CVS (chorionic villus sampling, 11–14 weeks) — give definitive chromosomal diagnosis but carry ~0.5–1% miscarriage risk.

Common Pregnancy Complications

Pre-eclampsia: High blood pressure + proteinuria after 20 weeks. Symptoms: severe headache, visual disturbances, epigastric pain, sudden oedema. Can progress to eclampsia (seizures) — medical emergency. Women at high risk are offered aspirin 150mg daily from 12 weeks.

Gestational diabetes (GDM): Glucose intolerance first identified in pregnancy. Diagnosed by OGTT (oral glucose tolerance test) at 24–28 weeks if risk factors present. Increases risk of macrosomia, shoulder dystocia, stillbirth. Managed with diet, metformin, or insulin. Usually resolves after birth — but increases lifetime T2DM risk.

Obstetric cholestasis: Liver condition causing intense itching (especially palms/soles) without rash. Raised bile acids — increases risk of stillbirth. Managed with ursodeoxycholic acid; elective delivery usually offered at 37 weeks.

Pain Relief in Labour

Epidural: Most effective pain relief — local anaesthetic infused into the epidural space. Requires anaesthetist. May slow labour and increase instrumental delivery rate. Gas & air (Entonox): 50% nitrous oxide/oxygen — takes the edge off, no effect on baby, but can cause nausea/dizziness. Diamorphine/pethidine: IM opioid — may cause nausea and can affect baby's breathing if given close to delivery (reversed with naloxone). TENS: Electrical stimulation — works best in early labour. Warm water/pool: Effective for pain and relaxation in established labour.

👶 Maternity — Labour & Birth Record

Complete after the birth. This becomes part of your permanent obstetric history.

kg
=
lb oz
✓ Saved

🌷 Maternity — Postnatal Recovery

✓ Saved

📖 Obstetric History Summary

A summary of all previous pregnancies for clinical reference.

✓ Saved

📚 Pregnancy Loss — Information Hub

Miscarriage

Around 1 in 4 confirmed pregnancies end in miscarriage — the majority in the first 12 weeks. Most are caused by chromosomal abnormalities in the embryo and are not caused by anything the parent did. After 3 or more miscarriages (recurrent miscarriage), NHS investigation is offered.

Management options: Expectant (wait for natural passage), medical (misoprostol pessaries), surgical (ERPC — evacuation of retained products of conception, under general anaesthetic). All are equally safe — choice depends on gestational age, medical history, and personal preference.

Ectopic Pregnancy

Medical emergency if ruptured. The fertilised egg implants outside the uterus — usually in a fallopian tube. Symptoms: one-sided pelvic pain, vaginal bleeding, shoulder tip pain (if internal bleeding). Ruptured ectopic causes collapse — call 999. Treatment: methotrexate injection (if unruptured, hCG <3000, no fetal heartbeat), salpingostomy or salpingectomy (surgical, laparoscopic). One previous ectopic increases risk of recurrence to ~10%.

Stillbirth

Defined as loss of a baby at or after 24 weeks gestation. Around 1 in 250 pregnancies in the UK. Causes include placental problems, infections, fetal abnormalities, and umbilical cord complications — in many cases, no cause is found. Reducing movement should always be reported promptly — never wait until the next day. Bereavement support is available via SANDS (stillbirth and neonatal death charity) — 0808 164 3332.

🌙 Menopause

Menopause is confirmed after 12 consecutive months without a period. Perimenopause (the transition) can begin years earlier. Average age in the UK is 51.

— Select —▼
Symptoms
Bone & Cardiovascular Health
✓ Saved

💊 Menopause & HRT — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Menopause — Information Hub

What Is Menopause?

Menopause is confirmed after 12 consecutive months without a menstrual period. The average age in the UK is 51. Perimenopause (the transition) typically begins 4–8 years before the last period. Over 30 symptoms have been identified — including vasomotor symptoms (hot flushes, night sweats), psychological symptoms (anxiety, low mood, brain fog), and genitourinary symptoms (vaginal dryness, UTIs).

Premature Ovarian Insufficiency (POI): Menopause before age 40 — affects ~1% of women. Requires HRT until at least the average age of menopause (51) to protect bone density and cardiovascular health, regardless of symptoms.

Bone Health & Osteoporosis

Oestrogen protects bone density. After menopause, bone loss accelerates — women can lose up to 20% of bone density in the 5–7 years after menopause. Osteoporosis (T-score ≤ −2.5 on DEXA) significantly increases fracture risk.

Prevention: HRT (most effective in early menopause), weight-bearing exercise, calcium (1000mg/day from diet), vitamin D (400–800IU/day). Treatment: Bisphosphonates (alendronate 70mg weekly — first-line), denosumab, raloxifene, romosozumab. DEXA scan offered to high-risk women — use FRAX tool to estimate 10-year fracture risk.

Genitourinary Syndrome of Menopause (GSM)

GSM (formerly called vaginal atrophy) affects up to 50% of postmenopausal women and does not improve without treatment — unlike vasomotor symptoms, which may ease over time. Symptoms: vaginal dryness, soreness, painful sex, recurrent UTIs, urinary urgency. Treatment: Vaginal oestrogen (pessaries, cream, ring — e.g. Vagifem, Estriol cream, Vagirux ring) is safe even for most women who cannot take systemic HRT, including many breast cancer survivors. Can be used long-term.

💊 HRT & Hormonal Therapy

Hormone Replacement Therapy, contraceptive hormones, or any other prescribed hormonal treatment. Modern body-identical HRT (oestradiol + micronised progesterone) carries a lower risk profile than older synthetic HRT.

✓ Saved

📚 HRT & Hormonal Therapy — Information Hub

Modern HRT — Reassurance on Risk

The risks of HRT were significantly overstated by the 2002 WHI study (which used oral conjugated equine oestrogen + medroxyprogesterone acetate). Current evidence (NICE NG23, BMS guidance) shows that body-identical HRT (transdermal oestradiol + micronised progesterone/Utrogestan) carries no increased risk of VTE and a significantly lower (possibly neutral) breast cancer risk compared to older synthetic progestogens.

Transdermal oestrogen (patches, gel, spray) does not increase clot (DVT/PE) risk — unlike oral oestrogen. This is important for women with a history of VTE or at elevated cardiovascular risk.

Types of HRT

Sequential (cyclical) HRT: Oestrogen daily + progestogen for 12–14 days/month — causes a monthly withdrawal bleed. Used in perimenopause / within 1 year of last period.

Continuous combined HRT: Oestrogen + progestogen daily — no bleed. Used once confirmed postmenopausal (12+ months since last period). Initial irregular spotting may occur for 3–6 months.

Testosterone: Licensed for women with low libido not responding to HRT. Applied as a small daily amount to the inner thigh or abdomen. Levels should be monitored to remain within the female physiological range.

When HRT Is Not Recommended

Absolute contraindications include: oestrogen-sensitive cancers (e.g. ER+ breast cancer — specialist advice needed, vaginal oestrogen may still be appropriate), unexplained vaginal bleeding, active liver disease, untreated endometrial hyperplasia, and pregnancy. HRT is not a contraceptive — contraception is needed until 2 years after the last period if under 50, or 1 year if over 50.

🌸 Vulval Health

Vulval conditions are common and often undertreated — many women don't know they have a diagnosable condition. This record helps ensure any clinician you see has the full picture.

✓ Saved

💊 Vulval Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Vulval Health — Information Hub

Lichen Sclerosus (LS)

A chronic inflammatory skin condition affecting the vulva (and sometimes anus). Causes white, thinned, fragile skin with itching, soreness, fissuring, and — if untreated — architectural changes (loss of labia minora, burying of the clitoris). Can occur at any age but most common post-menopause and in girls before puberty.

Diagnosis: Clinical (by specialist), confirmed by biopsy if uncertain. Treatment: Ultra-potent topical steroid (clobetasol propionate 0.05%) — applied as directed (typically daily for 4 weeks, then tapering). This is a long-term condition requiring ongoing management — not a cure, but symptoms are well-controlled with regular treatment. Annual review to check for VIN (pre-cancerous changes).

Important: Untreated LS carries a small (~4%) lifetime risk of vulval squamous cell carcinoma. Report any persistent ulcers, lumps, or new lesions promptly.

Vulvodynia & Vestibulodynia

Vulvodynia is chronic vulval pain lasting 3+ months with no identifiable cause. Vestibulodynia (vulvar vestibulitis) is pain specifically at the vaginal opening (vestibule) triggered by touch or pressure. Both are real, recognised conditions — not "in the mind" — and affect up to 8% of women.

Management: Pelvic floor physiotherapy (most effective — addresses muscle hypertonicity), topical lidocaine (short-term), low-dose tricyclic antidepressants or gabapentin (neuropathic pain), CBT, psychosexual therapy. A multidisciplinary approach gives the best outcomes. Avoid soap and scented products — use emollient wash (Dermol, Cetraben) and unperfumed moisturiser.

Recurrent Thrush & BV

Recurrent vulvovaginal candidiasis (thrush): 4+ episodes per year. Confirmed by swab culture before starting prophylactic treatment — not all itching is thrush. Prophylaxis: oral fluconazole 150mg weekly for 6 months (BASHH guideline). Identify and address triggers: antibiotics, tight synthetic clothing, diabetes, immunosuppression.

Bacterial vaginosis (BV): Most common cause of vaginal discharge in women of reproductive age — caused by imbalance of vaginal flora (not an STI). Characteristic fishy odour, thin grey-white discharge, high vaginal pH. Treatment: metronidazole 400mg BD for 5 days, or metronidazole 2g single dose. Recurrent BV: intravaginal lactic acid gel (Balance Activ), intravaginal boric acid (unlicensed), prophylactic metronidazole gel twice weekly.

Vaginismus

Involuntary spasm of the pelvic floor muscles making penetration painful or impossible. Can be lifelong (primary) or develop after a period of pain-free sex (secondary — often following LS, vulvodynia, trauma, or childbirth). Highly treatable: graded vaginal trainers (dilators) combined with pelvic floor physiotherapy and psychosexual therapy. Success rates are high with a supported programme — this is not a permanent condition.

🩺 Sexual Health

Sexual health is a core part of overall health. This section helps ensure any clinician you see has relevant context — particularly important during hospital admissions or when reviewing medications.

✓ Saved

💊 Sexual Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Sexual Health — Information Hub

NHS Free STI Screening

STI testing is free on the NHS and confidential. You can attend a GUM (genitourinary medicine) clinic without a GP referral. Many areas also offer free home test kits by post — order via SH:24 or your local sexual health service. Annual testing is recommended for anyone who is sexually active with more than one partner, and after any unprotected sex with a new partner.

Standard screen includes: Chlamydia, gonorrhoea (throat, genital, anal), syphilis, HIV, hepatitis B and C. Herpes is not routinely screened — diagnosis is usually clinical or by swab of an active lesion.

HIV — Undetectable = Untransmittable (U=U)

Modern antiretroviral therapy (ART) suppresses HIV to undetectable levels in the blood. Someone with an undetectable viral load (<200 copies/mL) cannot transmit HIV sexually — this is proven by major clinical trials (PARTNER, PARTNER2, Opposites Attract). Life expectancy on effective ART is comparable to the general population.

For clinicians: Standard infection control precautions apply for all patients regardless of HIV status. Disclosure of HIV status is the patient's choice — it does not change routine care for most procedures. HIV is not a contraindication to surgery, immunotherapy, or most treatments.

Genital Herpes (HSV)

Affects around 1 in 8 adults in the UK — most don't know they have it. HSV-1 (typically oral) and HSV-2 both cause genital herpes. After the primary episode, the virus lies dormant and may reactivate. Recurrences become less frequent over time for most people.

Treatment: Aciclovir or valaciclovir reduce severity and duration of outbreaks. Daily suppressive therapy (valaciclovir 500mg daily) reduces frequency by ~70–80% and reduces transmission risk. Herpes is very common and manageable — it does not affect long-term health for most people.

Chlamydia & Gonorrhoea

Chlamydia — most common STI in the UK. Often asymptomatic. If untreated, can cause pelvic inflammatory disease (PID), fallopian tube scarring, and fertility problems. Treat with doxycycline 100mg BD for 7 days (first-line) — single dose azithromycin no longer recommended (BASHH 2023). Gonorrhoea — increasing antibiotic resistance means treatment must be guided by culture sensitivity. Current first-line: ceftriaxone 1g IM single dose. Test-of-cure 2 weeks post-treatment is essential.

💧 Urinary Health

UTIs, bladder conditions, and urinary symptoms are among the most common reasons women see their GP at every stage of life. Recording your history here saves you repeating it every time.

✓ Saved

💊 Urinary Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Urinary Health — Information Hub

Urinary Tract Infections (UTIs)

UTIs are the most common bacterial infection in women — around 50% of women will have at least one in their lifetime. Women are more susceptible due to a shorter urethra. Common symptoms: burning on urination, frequency, urgency, cloudy or smelly urine, pelvic discomfort. Fever, loin pain, and rigors suggest kidney involvement (pyelonephritis) — seek urgent medical attention.

Recurrent UTIs (3+ per year): A urine culture (not just a dipstick) should be sent to identify the organism and sensitivity before each treatment course. NICE NG112 supports self-start antibiotics for women who can reliably identify their symptoms. Low-dose prophylaxis (nitrofurantoin or trimethoprim at night) or post-coital single dose is effective. Vaginal oestrogen significantly reduces recurrence in postmenopausal women — often overlooked.

Overactive Bladder (OAB)

OAB affects around 1 in 6 adults — defined as urgency (sudden compelling urge to urinate) with or without urge incontinence. Not the same as stress incontinence (leaking on coughing/exercise). Many women have mixed incontinence (both types).

Management: First-line — bladder training (increasing intervals between voids), pelvic floor physiotherapy, fluid management (reduce caffeine, alcohol, carbonated drinks). Second-line — anticholinergics (solifenacin, tolterodine) or beta-3 agonist (mirabegron — fewer dry mouth side effects). Third-line — botulinum toxin bladder injection (under cystoscopy), sacral nerve stimulation.

Interstitial Cystitis (IC) / Bladder Pain Syndrome

A chronic condition causing bladder pain, pressure, and urgency without infection. Often misdiagnosed as recurrent UTIs — if cultures keep coming back negative but symptoms persist, IC should be considered. Affects women far more than men. Diagnosis is by exclusion (cystoscopy, urine culture, symptom history). Management: dietary triggers (caffeine, citrus, alcohol, spicy food), pentosan polysulfate sodium (Elmiron), bladder installations, pain management, physiotherapy. The Interstitial Cystitis Association (ichelp.org) is a useful resource.

Haematuria — When to Seek Urgent Review

Visible blood in urine (frank haematuria) should always be investigated urgently — refer via 2-week wait pathway to rule out bladder cancer, kidney cancer, or other serious causes. Non-visible haematuria (dipstick positive, no symptoms) in women under 40 is usually benign (menstruation, vigorous exercise) but persistent cases in those over 40 warrant investigation. Do not assume recurrent UTI without a urine culture — persistent symptoms with negative cultures need further assessment.

💊 Contraception History

A full contraception history is clinically relevant — particularly when reviewing medications, starting HRT, or discussing future pregnancy. Many women have tried multiple methods over the years.

Contraception History & Side Effects
✓ Saved

💊 Contraception — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Contraception — Information Hub

Most Effective Methods (Long-Acting Reversible Contraception — LARC)

Mirena IUS (hormonal coil): >99% effective, lasts 5–8 years (licensed 5 years for contraception, 8 years off-label for perimenopausal women using it as the progestogen component of HRT). Reduces or stops periods. Best medical treatment for heavy periods. Insertion takes ~5 minutes — can be uncomfortable. Fertility returns immediately on removal.

Copper IUD: >99% effective, lasts 5–10 years (10-year device also licensed as emergency contraception if fitted within 5 days of unprotected sex). Completely hormone-free. May worsen periods, especially in the first 3–6 months. Fertility returns immediately on removal.

Implant (Nexplanon): >99% effective, lasts 3 years. Small rod inserted under the skin of the upper arm under local anaesthetic. Most common side effect: irregular bleeding (unpredictable, can be frequent). Fertility returns quickly after removal.

Combined Pill — Risks & Absolute Contraindications

The COCP is safe for the vast majority of women under 35 who don't smoke. It is absolutely contraindicated in: migraine with aura (increases stroke risk), personal history of VTE (DVT/PE), current or past breast cancer, liver disease, uncontrolled hypertension, and in smokers over 35.

VTE risk: Third- and fourth-generation pills (drospirenone — Yasmin/Eloine; gestodene; desogestrel) carry a higher VTE risk than second-generation (levonorgestrel — Microgynon, Rigevidon). All COCPs increase VTE risk 3–4× compared to non-users — but absolute risk remains very low in healthy women. Progestogen-only methods do not increase VTE risk.

Contraception & the Perimenopause

Contraception is needed until 2 years after the last period if under 50, and 1 year after the last period if over 50. HRT is NOT a contraceptive — women on HRT still need contraception if they could conceive. The Mirena IUS can serve double duty: it provides the progestogen component of HRT whilst also acting as contraception. The combined pill can mask menopausal symptoms and mask the last period — making it harder to know when menopause has occurred; switching to progestogen-only methods at 50 is often advised.

Emergency Contraception

Levonorgestrel (Levonelle): Up to 72 hours — effective if taken promptly (most effective within 12 hours). Available free from GP, sexual health clinic, or pharmacy. Ulipristal acetate (ellaOne): Up to 120 hours (5 days) — more effective than levonorgestrel, especially taken later. Available from GP or pharmacy (prescription required on NHS). Copper IUD: Most effective emergency contraception (>99%) — can be fitted up to 5 days after unprotected sex or 5 days after earliest likely ovulation. Also provides ongoing contraception for up to 10 years.

🦋 Thyroid Health

Thyroid conditions affect women 5–10 times more often than men. Hypothyroidism, Hashimoto's, and hyperthyroidism are among the most common long-term conditions women manage throughout their lives.

✓ Saved

💊 Thyroid Health — Treatment Log

A record of treatments, medications and therapies related to this condition. Include the prescribing clinician and current status.

Date StartedTreatment / TherapyDose & FrequencyPrescribing ClinicianStatusDate StoppedNotes
✓ Saved

📚 Thyroid Health — Information Hub

Hypothyroidism & Hashimoto's

Hypothyroidism (underactive thyroid) affects around 2% of the UK population — the vast majority women. The most common cause is Hashimoto's thyroiditis, an autoimmune condition where the immune system attacks the thyroid gland. Symptoms develop gradually: fatigue, weight gain, feeling cold, constipation, dry skin, hair thinning, low mood, brain fog, heavy periods.

Diagnosis: TSH is the primary screening test. A raised TSH (above ~4.5 mIU/L) with low or low-normal Free T4 confirms hypothyroidism. TSH alone can be normal in the early stages of Hashimoto's — TPO antibodies confirm autoimmune cause. Treatment: Levothyroxine (T4) — taken on an empty stomach, 30–60 minutes before food. Target TSH is 0.5–2.5 mIU/L for most people on treatment (NICE guidance).

Persistent symptoms despite normal TSH: A significant minority of people on levothyroxine continue to have symptoms despite a "normal" TSH. Options include: optimising TSH to the lower end of the range, trialling combination T4+T3 therapy (liothyronine — available on NHS in some areas), or switching to NDT (natural desiccated thyroid — less commonly prescribed). This remains a debated area — specialist referral is recommended if symptoms persist.

Hyperthyroidism & Graves' Disease

Hyperthyroidism (overactive thyroid) causes: weight loss despite good appetite, palpitations, tremor, anxiety, heat intolerance, sweating, diarrhoea, and irregular periods. Graves' disease (autoimmune) is the most common cause — may also cause eye disease (Graves' ophthalmopathy) and skin changes.

Treatment options: Antithyroid drugs (carbimazole — first-line in the UK; PTU in pregnancy first trimester), radioiodine (RAI — most commonly leads to hypothyroidism, then lifelong levothyroxine), or thyroidectomy. Beta-blockers (propranolol) control palpitations and tremor while awaiting response to treatment. Many patients achieve remission on antithyroid drugs alone after 12–18 months.

Thyroid & Pregnancy

Thyroid function changes significantly in pregnancy — TSH targets are lower (under 2.5 mIU/L in the first trimester). Women on levothyroxine often need a dose increase of 25–50mcg as soon as pregnancy is confirmed. Uncontrolled hypothyroidism in pregnancy increases risk of miscarriage, premature birth, and neurodevelopmental problems in the baby.

Important: If you are on levothyroxine and become pregnant, contact your GP immediately to have your dose reviewed. TSH should be checked every 4–6 weeks in the first half of pregnancy. Post-partum thyroiditis (temporary thyroid inflammation after childbirth) affects ~5–10% of women — causing a transient hyperthyroid phase followed by hypothyroidism before usually recovering.

Taking Levothyroxine — Practical Tips

Take on an empty stomach, 30–60 minutes before breakfast (or at bedtime, at least 4 hours after the last meal). Do not take with: calcium supplements, iron tablets, antacids, or dairy — all reduce absorption significantly. Take at least 4 hours apart from these. Consistency matters — take it at the same time every day. If you miss a dose, take it when you remember (same day) or double up the next day if you forget entirely. Do not split tablets unless prescribed — brand consistency can matter for some patients (do not switch between brands without GP advice).

Men's Health

📋 My Men's Health Topics

This page covers all aspects of men's health. Tick only the topics that are relevant to you — the section will expand with the right fields. You do not need to fill in every topic. Your choices are saved automatically with the Save button at the bottom of each card.

✓ Saved

🔵 Prostate Health

The prostate is a walnut-sized gland that produces seminal fluid. PSA (Prostate-Specific Antigen) is a blood marker used to monitor prostate health. Raised PSA does not always mean cancer — it can indicate BPH or prostatitis.

✓ Saved

📈 PSA Results Log

DatePSA (ng/mL)Notes / Action
✓ Saved

📚 Prostate Conditions — Information Hub

Benign Prostatic Hyperplasia (BPH)

BPH is a non-cancerous enlargement of the prostate that commonly affects men over 50. It causes lower urinary tract symptoms (LUTS) by squeezing the urethra. BPH does not increase the risk of prostate cancer.

Treatment options: Lifestyle changes (limit evening fluids, caffeine, alcohol), alpha-blockers (tamsulosin, doxazosin — relax prostate muscle), 5-ARIs (finasteride, dutasteride — shrink prostate), or TURP (transurethral resection of the prostate) surgery for severe cases.

Prostatitis

Inflammation of the prostate. Acute bacterial prostatitis is a medical emergency (fever, severe pelvic pain, difficulty urinating) — treat with antibiotics (ciprofloxacin 28 days). Chronic prostatitis/CPPS (Chronic Pelvic Pain Syndrome) is more common and may have no bacterial cause.

Symptoms: Pelvic/perineal pain, painful ejaculation, urinary frequency, flu-like illness (acute). Management of CPPS: Alpha-blockers, physiotherapy (pelvic floor), pain management, antibiotics only if bacterial infection confirmed.

Prostate Cancer

The most common cancer in men in the UK — around 1 in 8 men will be diagnosed. Most prostate cancers grow slowly and may never cause problems; some are aggressive. Diagnosis is via PSA blood test, MRI, and biopsy.

Risk factors: Age (rare under 50), Black ethnicity (2–3× higher risk), family history (father/brother with prostate cancer doubles risk), BRCA2 gene mutation.

Treatment options: Active surveillance (low-risk), radical prostatectomy (robotic or open), external beam radiotherapy, brachytherapy, hormone therapy (ADT — reduces testosterone), chemotherapy (docetaxel for advanced disease), focal therapy (HIFU, cryotherapy).

PSA Testing — What the Numbers Mean

PSA is age-related. A PSA of 3.0 ng/mL is more concerning in a 45-year-old than a 75-year-old. PSA velocity (rate of rise over time) is also important. PSA can be elevated by: BPH, prostatitis, UTI, vigorous exercise, ejaculation in the 48 hrs before test, and urological procedures.

AgeNormal PSA Range
40–490–2.5 ng/mL
50–590–3.5 ng/mL
60–690–4.5 ng/mL
70+0–6.5 ng/mL

🏥 Testicular Health

Testicular cancer is the most common cancer in men aged 15–49 in the UK. It is highly treatable — over 95% survive. Regular self-examination is key to early detection.

✓ Saved

📚 Testicular Conditions — Information Hub

Testicular Cancer

Two main types: Seminoma (slower growing, responds well to radiotherapy) and Non-seminomatous germ cell tumours (NSGCT) (faster growing, treated with chemotherapy — BEP regimen). Most present as a painless lump or swelling. Emergency if sudden severe pain — may indicate torsion.

Tumour markers: AFP (alpha-fetoprotein), beta-hCG, LDH — measured before and after orchidectomy to guide staging and monitor for recurrence.

Testicular Torsion

SURGICAL EMERGENCY. The testicle twists on its blood supply — causes sudden, severe, one-sided scrotal pain, often with nausea/vomiting. Call 999 or go to A&E immediately. Surgical de-torsion must occur within 6 hours to save the testicle. Risk is highest in adolescents but can occur at any age.

Varicocele

Enlarged veins within the scrotum (like varicose veins). Affects ~15% of men and ~40% of men being investigated for infertility. Often described as a "bag of worms" sensation. Most varicoceles are left-sided. Treatment (embolisation or surgery) is considered if causing pain or affecting fertility.

How to Self-Examine

Best done after a warm bath or shower when the scrotal skin is relaxed. Use both hands — gently roll each testicle between thumb and fingers. Feel for: hard lumps on the front or side, changes in size, shape, or consistency, a feeling of heaviness. The epididymis (soft, rope-like tube at the back) is normal — do not confuse with a lump. See your GP promptly if you find anything unusual.

❤️ Sexual & Reproductive Health

✓ Saved

📋 STI History Log

DateSTITreatmentOutcomeNotes
✓ Saved

📚 Erectile Dysfunction & Sexual Health — Information Hub

Erectile Dysfunction (ED)

ED affects up to half of men between 40–70 to some degree. It is often a cardiovascular warning sign — the penile arteries are small and show endothelial dysfunction earlier than coronary arteries. New or worsening ED warrants cardiovascular risk assessment.

Causes: Vascular (most common), diabetes (neuropathy and vascular), hypertension, hyperlipidaemia, obesity, smoking, alcohol, medications (beta-blockers, SSRIs, antipsychotics, 5-ARIs), anxiety/depression, relationship issues, post-prostatectomy nerve damage.

PDE5 inhibitors (first-line): Sildenafil (Viagra) — taken 30–60 min before sex, lasts 4–6 hrs. Tadalafil (Cialis) — daily low-dose (5mg) or on-demand (10–20mg), lasts up to 36 hrs. Caution: contraindicated with nitrates (risk of severe hypotension).

Male Fertility

Male factor infertility accounts for around 50% of all infertility cases. Semen analysis is the key investigation: normal parameters — volume ≥1.5mL, concentration ≥16 million/mL, total motility ≥42%, morphology ≥4% (Kruger strict criteria).

Optimising fertility: Avoid smoking, limit alcohol, maintain healthy BMI, avoid cycling shorts and hot baths (heat reduces sperm production), avoid anabolic steroids (suppress sperm production — can cause permanent azoospermia).

⚡ Testosterone & Hormonal Health

Testosterone naturally declines with age (around 1–2% per year after 30). Low testosterone (hypogonadism) can cause fatigue, low mood, reduced libido, muscle loss, and ED. It requires investigation before treatment is considered.

✓ Saved

📋 Hormone Blood Results Log

DateTotal Testosterone (nmol/L)LH (IU/L)FSH (IU/L)SHBG (nmol/L)Notes / Action
✓ Saved

📚 Testosterone & Male Hormones — Information Hub

Late-Onset Hypogonadism (LOH)

Sometimes called the "male menopause" (andropause), LOH is a clinical and biochemical syndrome associated with ageing. Unlike menopause, it is gradual. Diagnosis requires two morning testosterone levels below the normal range (NHS labs: typically <10.4 nmol/L) plus symptoms.

TRT monitoring: Once started, levels should be checked at 3 months, then 6-monthly. Monitor: testosterone (target mid-normal range), PSA, haematocrit (TRT raises red cell mass — stop if haematocrit >54%), liver function, blood pressure.

Anabolic Steroid Use — Risks

Illicit anabolic steroid use causes severe suppression of the HPG axis (hypothalamic-pituitary-gonadal). This leads to: testicular atrophy, azoospermia (can be permanent), gynaecomastia, cardiovascular damage (cardiomyopathy, dyslipidaemia), liver toxicity (oral steroids), and acne. Recovery of natural testosterone production after cessation may take 1–2 years or may not occur. Tell your doctor if you have used these substances.

Gynaecomastia

Benign breast tissue enlargement in men. Common causes: puberty (physiological), obesity (aromatisation of oestrogen from fat tissue), medications (spironolactone, cimetidine, some antipsychotics, opioids, cannabis, anabolic steroids), liver disease, hypogonadism. Needs investigation if painful, rapidly growing, or unilateral (to exclude breast cancer — rare in men but possible). Treated by addressing the cause; surgical reduction for persistent cases.

🔬 NHS Screening & Health Checks

NHS screening programmes offered to men. These are not diagnostic — they identify those who may need further investigation.

✓ Saved

📚 Men's Screening Programmes — Information Hub

Abdominal Aortic Aneurysm (AAA) Screening

An AAA is a dangerous bulge in the aorta (the main blood vessel from the heart). Men are offered a one-off ultrasound scan at age 65 — the UK AAA Screening Programme. If a AAA is found, the frequency of monitoring depends on size:

Aortic DiameterAction
<3 cmNormal — discharged
3.0–4.4 cm (small)Annual surveillance scan
4.5–5.4 cm (medium)3-monthly surveillance scan
≥5.5 cm (large)Urgent referral for surgery (EVAR or open repair)
Bowel Cancer Screening (FIT Test)

The Faecal Immunochemical Test (FIT) detects tiny traces of blood in the stool — an early sign of bowel cancer or polyps. In England, it is offered every 2 years from age 50–74 (postal kit). A positive result means blood was detected — it does NOT mean cancer, but you will be referred for a colonoscopy. Around 2 in 100 FIT tests are positive; of these, only a small number have cancer.

NHS Health Check

A 20–30 minute appointment offered every 5 years to adults aged 40–74 without a pre-existing cardiovascular condition. It checks blood pressure, cholesterol, blood glucose (or HbA1c), BMI, and calculates your 10-year cardiovascular risk using QRISK3. Men are at higher CVD risk than women at equivalent ages — on average, men have their first heart attack 7–10 years younger than women.

🧠 Mental Health & Wellbeing

Men are statistically less likely to seek help for mental health — but 3 in 4 suicides in the UK are by men. This section is a private record to support your mental health conversations with healthcare professionals.

✓ Saved

📚 Men's Mental Health — Information Hub

Why Men's Mental Health Is Different

Men are less likely to recognise symptoms of depression and anxiety, less likely to seek help, and more likely to use harmful coping strategies (alcohol, substance use, social withdrawal). Men often present with "masked depression" — irritability, anger, risk-taking behaviour, or physical complaints rather than sadness.

Warning signs to watch for: Loss of interest in things you used to enjoy, withdrawing from friends and family, increased alcohol or drug use, feeling a burden to others, reckless behaviour, talking about death or hopelessness. These are medical symptoms — not weakness.

Getting Help

NHS Talking Therapies (IAPT): Self-refer online at nhs.uk for CBT, counselling, and other psychological therapies. No GP referral needed in most areas. Waiting times vary.

Charities: CALM (Campaign Against Living Miserably) — helpline 0800 58 58 58 (5pm–midnight daily). Mind — mind.org.uk. Movember Foundation — men's health charity. Andy's Man Club — peer support groups for men.

Crisis Support

In a crisis: Samaritans — 116 123 (free, 24/7). NHS 111 — option 2 for mental health crisis. A&E for immediate risk to life. Crisis Resolution & Home Treatment teams (via CMHT). Text SHOUT to 85258 (free, 24/7 text-based support). 999 if in immediate danger.

🩺 Penile Health

Conditions affecting the penis are common and often go undiscussed. This section gives your clinical team the full picture without requiring you to explain everything under pressure.

✓ Saved

📚 Penile Conditions — Information Hub

Peyronie's Disease

Scar tissue (plaque) forms inside the penis, causing it to curve during erections. Affects around 1 in 10 men — most commonly between 40–70. It is not a sexually transmitted condition and is not caused by anything the man has done. The acute phase (first 6–18 months) may involve pain; the chronic phase is usually painless but the curvature persists.

Treatment: Mild cases may not need treatment. Collagenase injections (Xiapex) can break down scar tissue. Penile traction therapy may help. Surgical options (plication, grafting, penile implant) are considered for severe or stable disease that affects function. Discuss with a urologist.

Phimosis & Balanitis

Phimosis: The foreskin is too tight to retract. In adults it can cause pain during sex, difficulty urinating, or recurrent infections. First-line treatment is a topical steroid cream (betamethasone) applied daily for 4–8 weeks — this works in around 70–80% of cases. Circumcision or preputioplasty if cream fails.

Balanitis xerotica obliterans (BXO / lichen sclerosus): A chronic inflammatory skin condition causing white, thickened patches on the foreskin and glans. Can cause severe phimosis. Treated with high-potency steroids; circumcision is often recommended to prevent progression.

Penile Cancer

Rare in the UK (~700 cases/year). Risk factors include HPV infection, phimosis, smoking, and poor hygiene. Presents as a lump, sore, or discoloured area that does not heal. If you notice any unexplained change on the penis, see your GP promptly — caught early, penile cancer is very treatable.

🏋️ Hernia

Inguinal (groin) hernias are around 10 times more common in men than women. Many men live with a hernia for years — this section keeps the details handy for any clinical team.

✓ Saved

📋 Hernia History Log

Use this log if you have had more than one hernia, or to record previous repairs and recurrences.

Hernia TypeDate DiagnosedStatusRepair DateSurgeon / HospitalMeshNotes
✓ Saved

📚 Hernia — Information Hub

What is a Hernia?

A hernia occurs when an internal part of the body pushes through a weakness in the surrounding muscle or tissue wall. The most common type in men is an inguinal hernia — bowel or fatty tissue pushes through the inguinal canal in the groin. It usually appears as a lump that may disappear when you lie down and returns when you cough or strain.

Symptoms: A visible bulge in the groin or scrotum, aching or dragging sensation, discomfort when bending, coughing, or lifting, or no symptoms at all.

When is Surgery Needed?

Not all hernias need immediate surgery. Watchful waiting is appropriate for men with no or mild symptoms. Surgery is recommended if the hernia is enlarging, causing pain, or affecting daily life. Two main approaches: open surgery (single incision, often under local anaesthetic) or laparoscopic (keyhole) (faster recovery, better for bilateral hernias).

Mesh repair is standard — mesh reinforces the weak area and significantly reduces recurrence rates (from ~10% to ~1–2%). Mesh complications (chronic pain, infection, migration) are uncommon but should be discussed with your surgeon.

⚠️ Seek Emergency Care If:
  • The hernia suddenly becomes hard, tender, or cannot be pushed back in — possible strangulation
  • Severe, worsening pain in the groin or abdomen
  • Nausea, vomiting, or signs of bowel obstruction
  • Redness or discolouration over the lump

A strangulated hernia cuts off blood supply to the trapped tissue — it is a surgical emergency. Call 999 or go to A&E immediately.

🦶 Gout

Gout is three times more common in men than women. It causes sudden, severe joint pain — most often in the big toe — caused by a build-up of uric acid crystals. It is very manageable with the right treatment and lifestyle changes.

✓ Saved

📋 Gout Attack Log

DateJoint AffectedSeverityTreatment UsedTriggerDurationNotes
✓ Saved

📚 Gout — Information Hub

What Causes Gout?

Gout is caused by hyperuricaemia — too much uric acid in the blood. When levels are high, uric acid crystallises and deposits in joints, causing the sudden, intense inflammation of a gout attack. The big toe is affected in around 50% of first attacks (a pattern called podagra).

Causes of raised uric acid: Diet (red meat, offal, shellfish, beer, spirits, fructose-sweetened drinks), dehydration, diuretics (thiazides, furosemide), aspirin, renal impairment, obesity, hypertension, and genetics.

Managing an Acute Attack

Start treatment within 24 hours of the attack — the sooner you treat, the quicker it resolves. Rest and elevate the affected joint. Keep well hydrated. NSAIDs (naproxen 500mg twice daily or indomethacin) are first-line if tolerated. Colchicine (500mcg 2–4 times daily) is an effective alternative — particularly if NSAIDs are contraindicated. Prednisolone (short course) if both are unsuitable (e.g. CKD).

Do NOT start or stop allopurinol during an acute attack — this can prolong or worsen it. Wait until the attack has fully settled for 2–4 weeks, then begin or adjust ULT.

Long-Term Prevention (ULT)

Urate-lowering therapy is recommended if you have 2+ attacks per year, tophi, uric acid kidney stones, or renal impairment. Allopurinol is first-line — start low (100mg daily), increase every 4 weeks until uric acid target <360 µmol/L is reached (or <300 if tophi). Cover with colchicine (500mcg twice daily) for the first 3–6 months when starting ULT to prevent flares. Allopurinol dose must be reduced in renal impairment.

Lifestyle
  • Stay well hydrated — aim for 2–3 litres of water per day
  • Reduce red meat, offal, and shellfish
  • Avoid beer and spirits (wine in moderation is lower risk)
  • Cut down on fructose-sweetened drinks (fruit juice, fizzy drinks)
  • Low-fat dairy (milk, yoghurt) has a uricosuric effect — may help lower uric acid
  • Lose weight gradually — rapid weight loss can trigger attacks
  • Cherries and cherry extract have modest evidence for reducing flares

🔴 Blood in Urine (Haematuria)

Blood in urine — visible or found on a urine dipstick — must always be investigated. It can indicate a UTI, kidney stones, or more serious conditions. It does not always mean cancer, but it should never be ignored.

✓ Saved

📋 Haematuria Episode Log

DateTypeAssociated SymptomsInvestigationsCause FoundOutcome / Notes
✓ Saved

📚 Haematuria — Information Hub

Why It Must Always Be Investigated

Visible haematuria (blood you can see) in any adult over 45 is treated as suspected cancer until proven otherwise — NICE guidelines require an urgent 2-week-wait urology referral. Even non-visible haematuria (found on a dipstick, with no UTI) warrants investigation in anyone over 60 or with risk factors.

Common causes (in order of likelihood): UTI (most common), kidney stones, BPH, bladder cancer, kidney cancer, prostate cancer, glomerulonephritis (kidney inflammation), anticoagulation drugs (warfarin, apixaban, rivaroxaban), vigorous exercise.

The Investigation Pathway
  1. Urine dipstick & MSU — confirm blood and exclude infection
  2. Blood tests — renal function (eGFR, creatinine), PSA (if prostate suspected)
  3. Urine cytology — checks for abnormal (cancer) cells shed in urine
  4. Ultrasound of kidneys and bladder — looks for masses, stones, hydronephrosis
  5. CT urogram (CT KUB) — detailed imaging of the whole urinary tract
  6. Flexible cystoscopy — camera examination of the bladder under local anaesthetic; outpatient procedure; takes ~10 minutes
⚠️ Go to A&E or Call 111 if:
  • You are passing blood clots and cannot urinate (urinary retention)
  • The bleeding is very heavy or not stopping
  • You have severe loin or abdominal pain alongside the blood
  • You feel faint, have a high fever, or are generally very unwell

💧 Urinary Health

UTIs, kidney stones, overactive bladder, and other urinary conditions affect men of all ages. Recording your urinary history here means you don't have to repeat it every time you see a clinician.

✓ Saved

📚 Urinary Health — Information Hub

UTIs in Men — What's Different

UTIs are much less common in men than women due to the longer urethra. When a man develops a UTI, it is usually assumed to be complicated (involving the upper urinary tract or prostate) until proven otherwise. A urine culture should always be sent. Common causes in men include: urethral stricture, BPH (poor bladder emptying), kidney stones, catheterisation, and prostatitis.

Treatment: A longer course of antibiotics (7–14 days) is typically recommended for men compared to women. Recurrent UTIs in men warrant investigation — ultrasound, flow rate measurement, cystoscopy, and PSA testing may all be indicated. Trimethoprim and nitrofurantoin are common first-line options (depending on culture result).

Lower Urinary Tract Symptoms (LUTS) & BPH

LUTS affects around 30% of men over 65. Symptoms include: frequency, urgency, nocturia (waking at night), weak stream, incomplete emptying, hesitancy, and post-void dribbling. In most men, BPH (benign prostatic hyperplasia) is the cause — the enlarged prostate compresses the urethra.

Management: Lifestyle changes (reduce evening fluids, caffeine, alcohol), bladder training, alpha-blockers (tamsulosin, doxazosin — relax smooth muscle), 5-ARIs (finasteride, dutasteride — shrink prostate over months), combination therapy for moderate-severe LUTS, or TURP surgery for severe cases. The International Prostate Symptom Score (IPSS) questionnaire is a useful self-assessment tool.

Overactive Bladder (OAB)

OAB in men is often linked to BPH but can occur independently. Defined as urgency (sudden strong urge to urinate), usually with frequency and nocturia, with or without urge incontinence. First-line management: bladder training, pelvic floor exercises, reduce caffeine and alcohol. Medication: anticholinergics (solifenacin, tolterodine) or beta-3 agonist mirabegron. Botulinum toxin bladder injection or sacral nerve stimulation for refractory cases.

Kidney Stones

Kidney stones (nephrolithiasis) affect around 1 in 10 people at some point in their lives — more common in men. Renal colic (severe loin-to-groin pain, often with nausea and vomiting) is a medical emergency if associated with fever or if the stone is causing obstruction.

Recurrent stones: Drink at least 2–3 litres of fluid daily. Urine should be pale yellow. Dietary advice depends on stone type (calcium oxalate stones — reduce oxalate foods; uric acid stones — reduce red meat, alcohol, purine-rich foods). 24-hour urine collection can identify metabolic risk factors. Thiazide diuretics or allopurinol may be prescribed for recurrent stone formers.

Post-Prostatectomy Incontinence

Urinary incontinence after radical prostatectomy is very common — affecting up to 60% of men immediately post-surgery. Most recover within 6–12 months. Pelvic floor exercises (Kegel exercises) should be started before surgery and continued after. Physiotherapy referral is strongly recommended. For persistent incontinence beyond 12 months: specialist continence review, urodynamics, and consideration of male sling surgery or artificial urinary sphincter (AUS) implantation.

🦋 Thyroid Health

Thyroid conditions are less common in men than women but can significantly affect energy, weight, heart rate, and mood. Undiagnosed thyroid disease is often missed because symptoms overlap with many other conditions.

✓ Saved

📚 Thyroid Health — Information Hub

Hypothyroidism & Hashimoto's in Men

Hypothyroidism is around 5–10 times more common in women, but it does affect men — and is often diagnosed later because symptoms (fatigue, weight gain, brain fog, low mood) are frequently attributed to other causes. The most common cause is Hashimoto's thyroiditis, an autoimmune condition.

Symptoms in men can include: Fatigue, unexplained weight gain, feeling cold all the time, constipation, dry skin, hair loss (including eyebrows), low mood, brain fog, slow heart rate, reduced libido, and erectile dysfunction. Diagnosis: TSH is the primary test. A raised TSH with low or low-normal Free T4 confirms hypothyroidism. TPO antibodies confirm Hashimoto's.

Treatment: Levothyroxine (T4) taken on an empty stomach, 30–60 minutes before food. Target TSH is typically 0.5–2.5 mIU/L. Annual monitoring once stable. Avoid taking with calcium, iron, or antacids — these significantly reduce absorption.

Hyperthyroidism & Graves' Disease

Hyperthyroidism in men causes: unintended weight loss, palpitations, tremor, heat intolerance, anxiety, sweating, diarrhoea, and fatigue. Graves' disease (autoimmune) is the most common cause. Can also cause gynaecomastia (breast tissue enlargement in men) and reduced fertility through effects on testosterone and sperm production.

Treatment: Antithyroid drugs (carbimazole first-line in the UK), radioiodine (most commonly leads to hypothyroidism), or thyroidectomy. Beta-blockers (propranolol) control symptoms while awaiting treatment response. Most patients achieve remission after 12–18 months of antithyroid therapy.

Thyroid & Testosterone

Both hypothyroidism and hyperthyroidism can affect testosterone levels and sexual function. Hypothyroidism can reduce SHBG (sex hormone-binding globulin), affecting free testosterone and libido. Hyperthyroidism can increase SHBG, reducing free testosterone. Treating the thyroid condition often resolves these secondary hormonal effects — it is important to optimise thyroid function before assuming primary testosterone deficiency.

Thyroid Nodules & Cancer

Thyroid nodules are common and usually benign. However, thyroid cancer is slightly more common in men over 60 (though overall still rare). Any thyroid nodule found incidentally on imaging should be assessed with ultrasound and possibly fine needle aspiration (FNA) biopsy.

Red flag symptoms: Rapidly growing neck lump, hoarseness (involving the recurrent laryngeal nerve), difficulty swallowing or breathing, cervical lymphadenopathy. These require urgent referral via 2-week wait pathway. Most well-differentiated thyroid cancers (papillary, follicular) have an excellent prognosis with surgery and radioiodine.

Taking Levothyroxine — Practical Tips

Take on an empty stomach, 30–60 minutes before breakfast (or at bedtime, at least 4 hours after the last meal). Do not take with: calcium supplements, iron tablets, antacids, or dairy — all reduce absorption significantly. Take at least 4 hours apart from these. Take at the same time every day — consistency matters. If you miss a dose, take it the same day or double up the next day. Brand consistency can matter for some patients — ask your GP before switching brands.

Physiotherapy

🏥 Therapist Details

Add a row for each physiotherapist — different conditions, clinics, or referrals can each have their own entry.

Therapist Name Job Title / Grade Hospital / Clinic Department Phone Condition / Referral Reason Referral Date Next Appointment
✓ Saved

💡 About Physiotherapy Referrals

🏥

Working with Your Physiotherapist

Understanding the referral and treatment pathway

What is Physiotherapy?

Physiotherapy helps restore movement and function when someone is affected by injury, illness, or disability. NHS physiotherapists are degree-qualified healthcare professionals registered with the Health and Care Professions Council (HCPC). They use a range of techniques including exercise, manual therapy, education, and advice to support recovery and manage long-term conditions.

Referral Routes
RouteNotes
GP ReferralMost common route; GP assesses need and refers to outpatient physio
Consultant ReferralOften following surgery or specialist diagnosis
Self-ReferralMany NHS trusts accept direct self-referral for musculoskeletal conditions
A&E / In-patientPhysio input during a hospital admission; often continued as outpatient
What to Bring to Appointments
  • Any relevant imaging reports (X-ray, MRI, CT)
  • Current medication list
  • Referral letter if you have one
  • Comfortable clothing that allows access to the affected area
  • A list of your symptoms — when they started, what makes them better or worse
✅ Getting the Most from Physiotherapy
  • Be honest about your pain levels and how symptoms affect daily life
  • Ask questions — understanding your condition helps with compliance
  • Complete home exercises between sessions
  • Report any changes or worsening symptoms promptly
This guidance is for general reference only. Always follow the personalised advice given by your physiotherapist.

🎯 Treatment Goals

Add a row per condition or treatment episode. Each therapist or referral can have its own goals.

Condition / Episode Short-Term Goals (0–6 wks) Long-Term Goals (6 wks+) Patient Priority Planned Sessions Review Date Precautions / Notes
✓ Saved

💡 About Goal-Setting in Physiotherapy

🎯

SMART Goals in Rehabilitation

How goals are set and why they matter

The SMART Framework
LetterMeaningExample
SSpecificWalk to the end of the street
MMeasurable200 metres without stopping
AAchievableRealistic given current function
RRelevantMeaningful to the patient's life
TTime-boundAchieved within 4 weeks
Why Patient-Centred Goals Matter

Research consistently shows that patients who set goals meaningful to their own lives — rather than purely clinical targets — have better engagement and outcomes. Your therapist will use these alongside clinical measures to tailor your treatment plan. Don't be afraid to say what matters most to you.

Common Outcome Measures Used
  • VAS / NRS — Visual or Numeric Rating Scale for pain (0–10)
  • PSFS — Patient-Specific Functional Scale
  • DASH / QuickDASH — Disabilities of the Arm, Shoulder and Hand
  • KOOS / HOOS — Knee / Hip injury and Osteoarthritis Outcome Score
  • 6MWT — Six-Minute Walk Test for functional capacity
  • Timed Up and Go (TUG) — Falls risk and mobility assessment
This guidance is for general reference only. Your physiotherapist will select the most appropriate outcome measures for your condition.

🏋️ Exercise Programme

Your prescribed home exercise programme. Add each exercise with sets, reps, and frequency.

Exercise Name Sets Reps / Time Frequency Equipment Status Notes / Technique
✓ Saved

💡 Exercise Programme Guidance

🏋️

Making the Most of Your Home Programme

Guidance on performing and progressing exercises safely

General Principles
  • Always warm up gently before starting exercises
  • Perform exercises slowly and with control — do not rush repetitions
  • Breathe steadily throughout; never hold your breath
  • Some discomfort during exercise is normal; sharp or severe pain is not — stop if this occurs
  • Consistency matters more than intensity: regular daily exercise beats occasional intensive sessions
Understanding Sets and Reps
TermMeaning
Rep (Repetition)One complete movement of the exercise
SetA group of repetitions performed together before resting
HoldMaintaining a position for a set number of seconds
FrequencyHow often per day or week the exercise should be performed
Progression Principles

Exercises are typically progressed when you can complete all sets and reps with good form and minimal discomfort. Your therapist will advise when and how to progress. Do not increase difficulty without guidance.

  1. Increase repetitions before increasing resistance
  2. Increase resistance or range of motion gradually
  3. Progress to more functional, weight-bearing exercises as tolerated
  4. Return to previous level if symptoms worsen
⚠️ Stop and Contact Your Therapist If:
  • You experience sharp, shooting, or severe pain during an exercise
  • Symptoms significantly worsen after exercising and do not settle within 24 hours
  • You develop swelling, redness, or heat around a joint
  • You feel dizzy, faint, or short of breath during exercise
This guidance is for general reference only. Always follow the specific exercise instructions given by your physiotherapist.

📋 Session Log

Record each physiotherapy session, treatment received, and your response.

Date Session # Therapist Treatment Given Pain Before (0–10) Pain After (0–10) Response / Notes
✓ Saved

💡 Understanding Physiotherapy Sessions

📋

Common Physiotherapy Treatments

What to expect and how to track your progress

Treatment Types You May Encounter
TreatmentDescription
Manual TherapyHands-on joint mobilisation, manipulation, or soft tissue massage
Therapeutic ExerciseSupervised exercise to restore strength, range of motion, and function
Electrotherapy (TENS/Ultrasound)Electrical or sound-wave modalities to reduce pain and promote healing
HydrotherapyExercises performed in warm water to reduce load on joints
Acupuncture / Dry NeedlingFine needles inserted to relieve pain and muscle tension
Taping / BracingKinesiology or rigid tape applied to support joints and alter movement
Education & AdviceGuidance on posture, activity modification, and self-management
Using the Pain Scale
ScoreDescription
0No pain
1–3Mild pain — noticeable but not limiting
4–6Moderate pain — affecting some activities
7–9Severe pain — significantly limiting
10Worst imaginable pain
Tips for Tracking Progress
  • Record your pain score before and after each session to see trends over time
  • Note any treatments that provided particular relief or caused a flare-up
  • Share this log with your therapist — it helps them tailor subsequent sessions
  • Record functional improvements, not just pain scores (e.g. "walked further today")
✅ Signs of Good Progress
  • Gradual reduction in pain scores between sessions
  • Improved range of movement or strength
  • Increased ability to perform daily activities
  • Reduced reliance on pain medication
  • Better sleep due to reduced pain
This guidance is for general reference only. Progress varies between individuals and conditions. Discuss your progress regularly with your physiotherapist.
—

🗓️ Physiotherapy Monthly Log

Log each day's session, exercise, and pain levels. Navigate months with the arrows above. Save each month separately.

Day Appointment? Exercises Done? Pain Before (0–10) Pain After (0–10) Mood (1–10) Notes
✓ Saved

Breaks & Fractures

🩻 Fracture & Break Log

A record of all fractures, breaks, and stress fractures. Include the bone affected, how the injury occurred, and the treatment provided.

Date Bone Side Mechanism of Injury Treatment
✓ Saved

🔩 Hardware & Implants In Situ

Any surgical hardware (plates, screws, rods, pins, wires) that remains in the body. Important for MRI screening and future surgical planning.

Date Inserted Hardware Type Location / Bone Surgeon / Hospital MRI Safe?
✓ Saved

📋 Healing & Follow-up Status

Current healing status and any ongoing follow-up for fractures.

Bone Side Current Status Next Review Date Appt Time Consultant / Team
✓ Saved

⚠️ Complications & Ongoing Issues

Record any complications arising from fractures, such as non-union, malunion, nerve damage, chronic pain, compartment syndrome, or osteoporosis diagnosis.

Date Noted Related Fracture Complication / Issue Management
✓ Saved

💡 Fractures & Bone Health — Information Hub

Types of Fracture
TypeDescription
Closed / SimpleBone broken but skin intact
Open / CompoundBone breaks through the skin — high infection risk; surgical emergency
Stress FractureTiny crack from repetitive force; common in feet, shins, and runners
PathologicalBreak caused by underlying bone disease (cancer, osteoporosis, infection) rather than trauma
ComminutedBone shattered into 3+ fragments; often requires surgery
GreenstickIncomplete break; bone bends and cracks on one side — common in children
Treatment Approaches
TreatmentWhen Used
Cast / splintStable, simple fractures — immobilises while bone heals (6–12 weeks typical)
ORIF (Open Reduction Internal Fixation)Plates and screws inserted to hold bone fragments in position
Intramedullary nailMetal rod inserted down the centre of long bones (femur, tibia)
External fixationFrame outside the body holds bones in place — used for complex/contaminated fractures
Joint replacementFemoral neck (hip) fractures in elderly — hemiarthroplasty or total hip replacement
Osteoporosis & Fragility Fractures

Osteoporosis causes bones to become weak and brittle — a fragility fracture is one caused by a force that would not normally break a healthy bone (e.g. a low-level fall). Common sites: vertebrae (spine), hip, and wrist. Around 1 in 2 women and 1 in 5 men over 50 will have an osteoporotic fracture.

Diagnosis: DEXA (dual-energy X-ray absorptiometry) scan measures bone density (T-score). T-score −1.0 to −2.5 = osteopenia; below −2.5 = osteoporosis. Treatment: Calcium (1,000–1,200 mg/day) + vitamin D (800–1,000 IU/day), bisphosphonates (alendronic acid — first-line), denosumab, romosozumab. Falls prevention and weight-bearing exercise are also important.

MRI Safety & Implants

Most modern orthopaedic implants (titanium plates, IM nails, hip replacements) are MRI-conditional — safe under specific conditions. Always tell MRI staff about any implants before a scan. Bring any implant cards or surgical notes if possible. Some older stainless steel implants may not be MRI-safe. K-wires and external fixators are usually removed before MRI.

⚠️ Seek Urgent Care If:
  • Severe pain, swelling, or deformity after an injury — possible fracture
  • Numbness, tingling, or loss of movement distal to an injury — possible nerve or vascular damage
  • Increasing pain, heat, or redness around a healed fracture site — possible infection or non-union
  • Back pain after a fall in someone with osteoporosis — possible vertebral fracture

📝 Additional Notes

Any additional information — bone density results, fall risk assessments, calcium/vitamin D supplementation, or relevant family history.

✓ Saved

🧠 Mental Health & Crisis Support

🆘 In Crisis? Get Help Now

If you or someone else is in immediate danger, call 999. For urgent mental health support, use one of the services below — they are free, confidential, and available 24 hours a day.

📞 Samaritans
116 123
Free · 24/7 · Emotional support for anyone in distress
📞 NHS Mental Health Urgent
111 → option 2
Free · 24/7 · NHS urgent mental health line
💬 SHOUT (Text)
Text 85258
Free · 24/7 · Text SHOUT to 85258 for crisis support
📞 PAPYRUS HOPELINEUK
0800 068 4141
Free · Mon–Fri 9am–midnight, weekends 2pm–midnight · Under 35s & suicide prevention

📋 My Mental Health Profile

Your personal mental health record — for your clinical team, and for anyone supporting you. Fill in what is relevant to you.

✓ Saved

🆘 My Personal Crisis Plan

A crisis plan written in your own words. The most useful document you can give a clinician or trusted person when you are not able to explain things yourself.

✓ Saved

⚠️ Recognising Warning Signs

Early warning signs that you or someone you know may be struggling and need support:

Emotional signs

  • Persistent low mood or hopelessness
  • Feeling like a burden to others
  • Intense anxiety or panic attacks
  • Talking about wanting to die or not be here
  • Feeling trapped or in unbearable pain
  • Sudden calmness after a period of depression (may indicate a decision has been made)

Behavioural signs

  • Withdrawing from friends, family, or activities
  • Giving away valued possessions
  • Increased alcohol or drug use
  • Neglecting personal hygiene or self-care
  • Sleeping much more or much less than usual
  • Researching methods of self-harm or suicide
  • Saying goodbye or writing farewell messages

Physical signs

  • Unexplained injuries
  • Significant weight loss or gain
  • Chronic fatigue with no medical cause
  • Neglecting medical treatment
If you notice these signs in yourself or someone else, don't wait — reach out to one of the crisis lines above or speak to your GP urgently.

🌿 Coping Strategies & Grounding Techniques

5-4-3-2-1 Grounding

Bring yourself back to the present moment by naming:

  • 5 things you can see
  • 4 things you can touch
  • 3 things you can hear
  • 2 things you can smell
  • 1 thing you can taste

Box Breathing

Reduces anxiety within minutes. Repeat 4 times:

  1. Breathe in for 4 counts
  2. Hold for 4 counts
  3. Breathe out for 4 counts
  4. Hold for 4 counts

Distraction Toolkit

Things to try when urges feel overwhelming:

  • Call or text a trusted person
  • Hold ice cubes in your hands
  • Go for a brisk walk
  • Put on music and sing along
  • Write down what you're feeling
  • Watch a familiar comforting TV show
  • Make a hot drink and sit with it

Self-Compassion Reminder

You are not weak for struggling — living with a chronic health condition is genuinely hard. It is okay to not be okay. You do not have to face this alone. Reaching out is a sign of strength, not failure.

📖 Mental Health & Chronic Illness

Living with a long-term condition significantly increases the risk of depression and anxiety. Understanding the link can help you seek the right support.

The link between physical and mental health

People living with chronic illness are 2–3 times more likely to experience depression or anxiety than the general population. Pain, fatigue, loss of independence, and uncertainty about the future all take a toll on mental wellbeing. This is a normal, recognised response — not a personal failing.

NHS mental health support

  • Talk to your GP — they can refer you to talking therapies (CBT, counselling) or review medication
  • IAPT / NHS Talking Therapies — self-refer online at nhs.uk/mental-health/talking-therapies for free CBT and counselling
  • Community Mental Health Team (CMHT) — specialist support for more complex needs, via GP referral
  • Your hospital team — many specialist centres have a psychologist or liaison psychiatry service you can be referred to

Medication and mental health

Some medications used in long-term condition management can affect mood (e.g. corticosteroids, certain immunosuppressants). If you notice a change in your mood after starting or changing a medication, tell your doctor — do not stop medication without medical advice.

Suicide & self-harm — what to know

  • Thoughts of suicide or self-harm are more common than people realise — having them does not make you dangerous or "mad"
  • Telling someone about suicidal thoughts does not make them more likely to act on them — it reduces risk
  • If you are having thoughts of ending your life, please call Samaritans (116 123) or NHS 111 option 2 now
  • If there is immediate risk of harm, call 999 or go to your nearest A&E

🔗 Further Support & Resources

Mind
Information and support for mental health problems
0300 123 3393 (Mon–Fri 9am–6pm)
mind.org.uk
Rethink Mental Illness
Support groups, advice, and advocacy
0300 5000 927 (Mon–Fri 9:30am–4pm)
rethink.org
CALM (Men)
Campaign Against Living Miserably — men's mental health
0800 58 58 58 (5pm–midnight daily)
thecalmzone.net
Young Minds
Mental health support for young people and parents
Text YM to 85258 (24/7)
youngminds.org.uk
NHS Every Mind Matters
Free NHS mental health tips and self-care plan
nhs.uk/every-mind-matters
NHS Talking Therapies
Self-refer for free CBT, counselling & more
nhs.uk/mental-health/talking-therapies

Cancer Care Record

📋 My Cancer Type — Additional Detail

Tick the cancer types that apply to you — a tab will appear for each one. The Core Record tab is always present.

✓ Saved

Cancer Diagnosis

✓ Saved

ℹ️ About Cancer Staging & Grading

What does the stage mean? The stage describes how far a cancer has spread. Stage I means it is small and contained. Stage IV means it has spread to other parts of the body (metastasis). A higher stage does not always mean the cancer cannot be treated.

What does the grade mean? The grade describes how the cancer cells look under a microscope. Grade 1 cells look almost normal and tend to grow slowly. Grade 3 cells look very abnormal and tend to grow more quickly.

Remission means the signs and symptoms of cancer have reduced or disappeared. Complete remission means no cancer can be detected at all. This is different from being cured — your team will continue to monitor you.

Useful resources:

  • Macmillan Cancer Support — macmillan.org.uk
  • Cancer Research UK — cancerresearchuk.org
  • NHS Cancer information — nhs.uk

Treatment History

Record every treatment you have had — past and present. Add a new row for each course of treatment.

Treatment TypeDrug / Regimen / Detail Start DateEnd Date OutcomeNotes
✓ Saved

ℹ️ Understanding Cancer Treatments

Chemotherapy uses drugs to destroy cancer cells or stop them dividing. Usually given in cycles with rest periods in between.

Radiotherapy uses high-energy radiation beams to destroy cancer cells, carefully aimed to limit damage to healthy tissue.

Surgery removes the tumour and sometimes nearby tissue or lymph nodes. May be used alone or alongside other treatments.

Immunotherapy helps your immune system recognise and attack cancer cells. Examples include checkpoint inhibitors (nivolumab, pembrolizumab) and CAR-T therapy.

Targeted therapy uses drugs that target specific proteins or gene changes in cancer cells. Examples: Herceptin (trastuzumab) for HER2-positive breast cancer, imatinib for CML.

Hormonal (endocrine) therapy slows or stops the growth of cancers that use hormones to grow, such as some breast and prostate cancers. Examples: tamoxifen, letrozole, enzalutamide.

Stem cell transplant replaces bone marrow destroyed by high-dose chemotherapy. Used in blood cancers such as leukaemia, lymphoma, and myeloma.

Palliative treatment is not the same as giving up. It focuses on controlling symptoms and maintaining quality of life — and can work alongside curative treatment.

Current / Active Treatment

✓ Saved

Cancer Care Team

✓ Saved

ℹ️ Your Cancer Care Team — Who Does What

Oncologist / Consultant — your lead specialist doctor. They oversee your treatment plan and make key decisions about your care.

Cancer Nurse Specialist (CNS) — a highly trained specialist nurse who is your main point of contact day-to-day. They can answer questions, arrange appointments, and provide emotional support. Always call your CNS first if you are worried.

Macmillan Nurse or Support Worker — provides practical and emotional support. They can help with benefits, financial concerns, and connecting you with local services. Free helpline: 0808 808 00 00 (8am–8pm, 7 days).

Palliative Care Team — specialists in managing symptoms and improving quality of life. They work alongside your oncology team and are not just for end-of-life care.

When to call your team urgently:

  • Temperature 37.5°C or above (or below 36°C) — possible infection / neutropenic sepsis
  • Severe chills, shaking, or feeling very unwell
  • Uncontrolled vomiting or diarrhoea
  • Unexpected bleeding
  • Difficulty breathing or severe chest pain
  • Swollen, painful, or red limb (possible clot)

⚠️ If you have received chemotherapy in the last 6 weeks and feel unwell, go to A&E or call 999 immediately. Tell staff you are an immunocompromised cancer patient.

Tumour Markers & Surveillance

Record your blood test results and scans here. Add a new row each time a result is taken.

Marker / TestResultUnits DateTrendNotes
✓ Saved

ℹ️ Understanding Tumour Markers

Tumour markers are substances found in blood, urine, or tissue that may be higher than normal in some cancers. They are used to monitor treatment progress and check for recurrence — not usually to diagnose cancer on their own.

  • PSA — used to monitor prostate cancer. A rising PSA after treatment may indicate recurrence.
  • CA-125 — most commonly used for ovarian cancer monitoring. Can also be raised in other conditions.
  • CA 19-9 — used in pancreatic and other gastrointestinal cancers.
  • CA 15-3 — used in advanced breast cancer monitoring.
  • CEA — used in colorectal (bowel) and other cancers.
  • AFP & HCG — used in testicular cancer and some liver cancers.
  • LDH — raised in lymphoma, melanoma, and other cancers; used as a general marker of disease activity.
  • Paraprotein / Beta-2 Microglobulin — used in myeloma monitoring.

A single result rarely tells the full story — your team looks at the trend over time. Always discuss your results with your oncologist or CNS.

Side Effects & Symptom Tracker

Keep a record of symptoms and side effects. This helps your team adjust your treatment if needed.

Symptom / Side EffectSeverityWhen Started Managed ByStatusNotes
✓ Saved

ℹ️ Managing Side Effects

Fatigue is the most common side effect. Rest when you need to, but gentle activity like short walks can help. Plan important activities for your best time of day.

Nausea — anti-sickness medicines work best when taken regularly as prescribed. Small, frequent meals and cold foods can help. Ginger tea or biscuits may ease mild nausea.

Mouth sores (mucositis) — rinse often with a mild saltwater solution. Use a soft toothbrush. Avoid alcohol-based mouthwashes. Tell your CNS if sores are severe.

Neuropathy (tingling or numbness) — usually in hands and feet. Tell your team — dose adjustments may help. Protect extremities from extreme temperatures.

"Chemo brain" — difficulty concentrating or remembering things is real and recognised. Keep lists, use reminders, and be patient with yourself. It usually improves after treatment ends.

Lymphoedema — swelling caused by damage to lymph nodes. See a specialist early. Compression garments and massage can help manage it.

Hair loss — usually temporary. Cold cap therapy during chemotherapy may reduce hair loss. Hair typically regrows 3–6 months after chemotherapy ends.

Emotional wellbeing — anxiety, low mood, and fear of recurrence are all normal. Ask your CNS or GP about counselling, support groups, or the Macmillan support line: 0808 808 00 00.

Wellbeing & Quality of Life

✓ Saved

🎀 Breast Cancer Details

✓ Saved

ℹ️ Breast Cancer — Key Information

ER/PR positive means the cancer cells have receptors for oestrogen or progesterone. These cancers are usually treated with hormonal (endocrine) therapies like tamoxifen or letrozole.

HER2 positive means the cancer has too much of a protein called HER2 which makes it grow faster. Targeted therapies such as Herceptin (trastuzumab) are very effective against HER2+ breast cancer.

Triple-negative means the cancer is ER−, PR−, and HER2−. It does not respond to hormonal therapies but may respond well to chemotherapy and immunotherapy.

BRCA1/2 are genes that repair DNA. A fault in either increases the risk of breast and ovarian cancer. If you have a BRCA mutation, other family members may wish to be tested.

Lymphoedema — swelling of the arm after lymph node surgery — affects some people. Ask your team about referral to a lymphoedema specialist.

Support: Breast Cancer Now — breastcancernow.org | Helpline: 0808 800 6000

🌸 Gynaecological Cancers

✓ Saved

ℹ️ Gynaecological Cancers — Key Information

Cervical cancer is most often caused by persistent infection with high-risk HPV. Regular cervical screening (smear tests) detects abnormal cells early. HPV vaccination protects against the most common high-risk strains.

Ovarian cancer is often called a "silent cancer" because symptoms (bloating, pelvic pain, needing to urinate more often, feeling full quickly) are vague and easily missed.

Uterine / endometrial cancer most commonly causes abnormal vaginal bleeding, especially after the menopause. It is often caught at an early, treatable stage because of this symptom.

CA-125 is a blood marker used to monitor ovarian cancer treatment response and check for recurrence. It can be raised by other conditions, so one result is not diagnostic on its own.

PARP inhibitors (such as olaparib/niraparib) are targeted treatments used in BRCA-mutated ovarian cancers.

Support: Target Ovarian Cancer | The Eve Appeal | Jo's Cervical Cancer Trust

🔵 Prostate Cancer Details

✓ Saved

ℹ️ Prostate Cancer — Key Information

PSA (Prostate-Specific Antigen) is a protein made by the prostate. Raised PSA can indicate prostate cancer, but also benign prostate enlargement or infection. It is used to monitor treatment response — a falling PSA is a good sign.

Gleason score grades how aggressive the cancer looks under the microscope. The higher the total (e.g. 4+3=7), the faster the cancer may grow. The ISUP grade group (1–5) is a newer, simpler system based on the same information.

Active surveillance monitors low-risk prostate cancer closely with regular PSA tests, MRI scans, and biopsies — without immediate treatment. It avoids side effects of treatment for cancers unlikely to cause harm.

Hormone therapy (ADT) reduces testosterone levels because prostate cancer cells need testosterone to grow. Side effects can include hot flushes, fatigue, and loss of libido.

Erectile dysfunction and urinary side effects are common after surgery and radiotherapy. Specialist support is available — ask your CNS or GP for a referral.

Support: Prostate Cancer UK — prostatecanceruk.org | Helpline: 0800 074 8383

🔵 Testicular Cancer Details

✓ Saved

ℹ️ Testicular Cancer — Key Information

Testicular cancer is the most common cancer in men aged 15–45, but it is also one of the most treatable — even if it has spread. Over 95% of men with testicular cancer are cured with modern treatment.

Seminomas tend to grow slowly and respond very well to radiotherapy and chemotherapy. Non-seminomas (NSGCT) tend to grow faster but are also highly treatable.

AFP, HCG, and LDH are tumour markers used to assess treatment response and detect recurrence. After successful treatment they should return to normal levels.

BEP chemotherapy (Bleomycin, Etoposide, Cisplatin) is the most common regimen. It is given in 3–4 cycles, each lasting 3 weeks.

Fertility — most men retain fertility from the remaining testicle. However, chemotherapy can affect fertility. Sperm banking before chemotherapy is strongly recommended.

Self-examination — check your testicles monthly for any new lump, swelling, or change. Any unexplained change should be assessed by a doctor promptly.

Support: Orchid — Fighting Male Cancer — orchid-cancer.org.uk

Bowel / Colorectal Cancer

✓ Saved

ℹ️ Bowel Cancer — Key Information

Bowel (colorectal) cancer is the fourth most common cancer in the UK. Most cases develop from polyps — small growths inside the bowel — which is why bowel cancer screening is so important.

Symptoms to report urgently: blood in your stools, a persistent change in bowel habit lasting more than 3 weeks, unexplained weight loss, severe abdominal pain, or feeling like your bowel doesn't empty completely.

Lynch syndrome is an inherited condition that increases the risk of bowel, womb, and other cancers. MSI-high status in the tumour may indicate Lynch syndrome — your team may recommend genetic testing for you and your family.

KRAS/NRAS/BRAF mutations affect which targeted therapies will work. If these genes are wild-type (not mutated), targeted therapies like cetuximab or panitumumab may be used alongside chemotherapy.

Bowel screening — in England, home FIT test kits are sent every 2 years to adults aged 50–74. If you have a family history of bowel cancer, you may be eligible for colonoscopy screening earlier.

Support: Bowel Cancer UK — bowelcanceruk.org.uk | Helpline: 0207 940 1760

Lung Cancer

✓ Saved

ℹ️ Lung Cancer — Key Information

Lung cancer is the UK's most common cause of cancer death. It is more treatable when caught early. Targeted therapy and immunotherapy have transformed outcomes for many patients in recent years.

EGFR, ALK, and ROS1 are gene mutations found in non-small cell lung cancer. If present, very effective targeted oral therapies are available: osimertinib (EGFR), alectinib (ALK), crizotinib (ROS1).

PD-L1 expression measures how likely immunotherapy (checkpoint inhibitors like pembrolizumab) is to work. A score of 50% or above means immunotherapy may be used as first-line treatment.

Small cell lung cancer (SCLC) grows and spreads quickly but usually responds well to chemotherapy initially.

Symptoms that need urgent review: persistent cough, coughing up blood, breathlessness getting worse, unexplained weight loss, chest pain.

Support: Roy Castle Lung Cancer Foundation — roycastle.org | Lung Cancer UK

Skin Cancer & Melanoma

✓ Saved

ℹ️ Skin Cancer — Key Information

Skin cancer is the most common cancer in the UK. Most cases are highly treatable, especially when caught early.

Melanoma is the most serious type. The ABCDE rule helps spot suspicious moles: Asymmetry, Border irregularity, Colour variation, Diameter >6mm, Evolving (changing).

Breslow thickness measures how deeply the melanoma has grown into the skin. Thinner melanomas have a better outlook and may be treated with surgery alone.

BRAF mutation — around 50% of melanomas have a BRAF V600 mutation. BRAF/MEK inhibitor combinations (e.g. dabrafenib + trametinib) are highly effective targeted therapies.

Basal cell carcinoma (BCC) — the most common type. Rarely spreads but can grow locally. Usually treated with surgery, creams, or photodynamic therapy.

Sun protection: Use SPF 30+ sunscreen, cover up, and avoid sunbeds. Check your skin regularly for new or changing lesions.

Support: Melanoma UK — melanomauk.org.uk

Bladder Cancer

✓ Saved

ℹ️ Bladder Cancer — Key Information

Bladder cancer is one of the most common cancers of the urinary system. The most frequent symptom is blood in the urine (haematuria), which is often painless. Always report blood in your urine to your GP.

Non-muscle invasive bladder cancer (NMIBC) has not grown into the muscle wall. It is usually treated with TURBT followed by intravesical therapy placed directly into the bladder.

BCG therapy uses a weakened form of the TB bacterium to stimulate the immune system to attack remaining cancer cells.

Muscle invasive bladder cancer (MIBC) has grown into the muscle wall. Treatment usually involves chemotherapy followed by radical cystectomy (bladder removal) or radical radiotherapy.

Surveillance cystoscopy — regular camera checks into the bladder are essential because bladder cancer has a high recurrence rate. Attend every appointment even if you feel well.

Support: Action Bladder Cancer UK | Macmillan Cancer Support

🔬 Neuroendocrine Tumour (NET)

NETs arise from neuroendocrine cells throughout the body — most commonly in the gut, pancreas, and lungs. They range from slow-growing to aggressive. Many are found incidentally.

✓ Saved

📚 Neuroendocrine Tumours — Information Hub

What is a NET? Neuroendocrine tumours develop from cells of the neuroendocrine system. They can occur almost anywhere in the body but are most common in the digestive tract, pancreas, and lungs. Most grow slowly, but some are aggressive. Many are found incidentally on a CT scan done for another reason.

Carcinoid Syndrome — when a functioning NET (usually in the small intestine with liver metastases) releases hormones into the bloodstream, it can cause flushing, diarrhoea, wheezing, and in rare cases carcinoid heart disease. Somatostatin analogues (Octreotide, Lanreotide) control these symptoms very effectively. Avoid triggers: alcohol, stress, certain foods, strenuous exercise, and anaesthetic agents that can provoke a carcinoid crisis.

Grading — the Ki-67 proliferation index tells how quickly tumour cells are dividing. Grade 1 (Ki-67 <3%) may be watched for years. Grade 3 / NEC is aggressive and treated more like conventional cancer.

PRRT (Lu-177 DOTATATE / Lutathera) is a targeted radiation therapy for somatostatin receptor-positive NETs. It is given in 4 cycles, 8 weeks apart.

Important — Tell Every Clinician: If you have a functioning NET, always tell anaesthetists, surgeons, and A&E staff before any procedure. Octreotide cover should be given before any surgery or invasive procedure.

Support: NET Patient Foundation — netpatientfoundation.org | Helpline: 0300 302 0011

🩸 Blood Cancer — Lymphoma / Leukaemia / Myeloma

Blood cancers affect the production and function of blood cells. This panel covers Lymphoma, Leukaemia, and Myeloma.

✓ Saved

📚 Blood Cancers — Information Hub

Lymphoma — Hodgkin Lymphoma is one of the most treatable cancers — over 85% of patients are cured with chemotherapy (ABVD) +/- radiotherapy. Non-Hodgkin Lymphoma covers a wide spectrum; DLBCL is the most common aggressive type and is treated with R-CHOP. Follicular lymphoma is often slow-growing — watchful waiting is appropriate for many patients.

Leukaemia — AML is aggressive; intensive chemotherapy followed by stem cell transplant is often required. CML has been transformed by tyrosine kinase inhibitors (imatinib, dasatinib) — most patients achieve long-term remission on daily oral tablets. CLL is often slow-growing and may not need treatment for years.

Myeloma — Multiple myeloma is not currently curable but is very treatable — many patients live for many years. Treatment typically involves bortezomib-based induction, followed by autologous stem cell transplant in eligible patients, then maintenance therapy.

Infection Risk — Blood cancer patients and those post-transplant are highly immunocompromised. Always carry a neutropenic sepsis alert card if given one. If you develop a temperature ≥37.5°C or feel suddenly unwell, go to A&E immediately and say you are immunocompromised.

Support: Lymphoma Action | Myeloma UK | Blood Cancer UK

🗣️ Head & Neck Cancer

Head and neck cancers affect the mouth, throat, larynx, salivary glands, nose, and sinuses. Nutrition support is often a critical part of care.

✓ Saved

📚 Head & Neck Cancer — Information Hub

HPV-Associated Head & Neck Cancer — HPV-positive oropharyngeal cancer (tonsil and base of tongue) is increasing rapidly, particularly in men aged 40–60. It has a significantly better prognosis than HPV-negative disease.

Nutrition During Treatment — Radiotherapy to the head and neck causes mucositis, xerostomia (dry mouth), and dysphagia which can make eating impossible. A feeding tube is often placed before treatment starts. Maintaining nutrition through treatment is critical for recovery.

Osteoradionecrosis — Radiotherapy to the jaw area can damage bone and impair healing. This is why dental clearance before radiotherapy is essential. Always tell any dentist that you have had radiotherapy to the head and neck before any tooth extraction or dental procedure.

Life After Laryngectomy — After total laryngectomy, breathing occurs through a permanent stoma in the neck. In an emergency, always show first responders your laryngectomy card — CPR must be given via the neck stoma. Support: Neckbreathers — neckbreathers.org.uk

🫁 Pancreatic Cancer

Recording the full surgical and nutritional picture helps every clinician you meet understand your complex picture quickly.

✓ Saved

📚 Pancreatic Cancer — Information Hub

Exocrine Pancreatic Insufficiency (EPI) & PERT — After pancreatic surgery, the pancreas cannot produce enough digestive enzymes. This causes malabsorption — fatty stools, weight loss, bloating. PERT (Creon) must be taken with every meal and snack containing fat or protein. Without PERT, malnutrition is a significant risk.

The Whipple Procedure — A pancreaticoduodenectomy (Whipple) removes the head of the pancreas, part of the small intestine, the gallbladder, and part of the bile duct. It is one of the most complex abdominal operations. Long-term consequences include EPI, diabetes (Type 3c), and altered digestion.

Type 3c Diabetes — Pancreatic diabetes (Type 3c) occurs when the pancreas cannot produce enough insulin. It behaves differently to Type 1 or Type 2 — blood glucose can be unpredictable, and hypoglycaemia risk is higher.

Support: Pancreatic Cancer UK — pancreaticcancer.org.uk | Helpline: 0808 801 0707

🫘 Kidney Cancer (Renal Cell Carcinoma)

Kidney cancer is often found incidentally on scans. Treatment has been transformed by immunotherapy and targeted therapy.

✓ Saved

📚 Kidney Cancer — Information Hub

Living with One Kidney — Most people live well with one kidney. The remaining kidney adapts. Important: stay well hydrated, avoid NSAIDs (ibuprofen, naproxen), monitor blood pressure regularly, and have annual kidney function (eGFR/creatinine) checks. Tell all clinicians you have one kidney — it affects drug dosing.

Targeted Therapy & Immunotherapy — RCC does not respond well to standard chemotherapy. Treatment has been transformed by VEGF-targeted therapies (sunitinib, pazopanib, cabozantinib) and immune checkpoint inhibitors (nivolumab, pembrolizumab). Combination regimens have significantly improved outcomes for metastatic disease.

Immunotherapy Side Effects — Immune checkpoint inhibitors can cause immune-related adverse events (irAEs) — the immune system attacks healthy tissue. Common: colitis, hepatitis, thyroiditis, rash, pneumonitis. Most are manageable with steroids if caught early. Report any new or worsening symptoms to your oncology team promptly.

Support: Kidney Research UK | Macmillan Cancer Support

🧠 Brain / CNS Cancer

Brain tumours range from slow-growing low-grade gliomas to aggressive glioblastomas. Key molecular markers (IDH, MGMT) guide treatment decisions and prognosis.

✓ Saved

📚 Brain Tumours — Information Hub

IDH & MGMT — Why They Matter — IDH mutation is the most important prognostic marker in gliomas. IDH-mutant tumours behave less aggressively. MGMT methylation means the tumour's DNA repair gene is switched off, making it more sensitive to temozolomide — methylated patients respond better to standard treatment for GBM.

Dexamethasone — Steroids reduce brain swelling around the tumour. Long-term use causes significant side effects: weight gain, raised blood glucose, insomnia, mood changes, muscle weakness, and increased infection risk. Do not stop steroids suddenly — always taper under medical supervision.

Driving & Seizures — A brain tumour diagnosis or any seizure must be reported to the DVLA. You must not drive until cleared by your neurologist or oncologist. It is a legal requirement to inform the DVLA.

Support: The Brain Tumour Charity | Helpline: 0808 800 0004 (free) | Brainstrust — brainstrust.org.uk

🫄 Oesophageal & Gastric Cancer

Upper GI cancers often require major surgery and long-term nutritional support. Recording the full surgical and nutritional picture is essential for safe ongoing care.

✓ Saved

📚 Oesophageal & Gastric Cancer — Information Hub

Life After Oesophagectomy or Gastrectomy — Small, frequent meals (5–6 per day) are essential. Try to separate eating and drinking. Sit upright for at least 30 minutes after meals. Weight loss after surgery is common; work with your dietitian to maintain nutrition.

Dumping Syndrome — Early dumping (within 30 minutes of eating) causes nausea, sweating, palpitations, and diarrhoea. Late dumping (1–3 hours after eating) causes reactive hypoglycaemia — sweating, shakiness, and weakness. Management: small frequent meals, avoid sugary foods, separate solids and liquids.

Vitamin B12 & Nutritional Deficiencies — After total gastrectomy, intrinsic factor is lost. B12 injections (hydroxocobalamin) are required for life, typically every 3 months. Also monitor: iron, calcium, vitamin D, folate. Annual blood tests should include a full nutritional screen.

Support: OPA (Oesophageal Patients Association) | Against Stomach Cancer | Macmillan Cancer Support

✓ Saved

Weight & BMI Tracker

📋 Current Monitoring Plan

This section is for anyone whose weight needs monitoring — whether you are trying to gain, stop losing, manage fluid, or track treatment effects. Fill in what applies to you.

✓ Saved

Click Archive This Plan when this monitoring period ends — whether you reached your goal, your situation changed, or your team started a new plan. It saves everything to history and clears the form for a fresh start.

📚 Plan History

A record of past monitoring periods. Automatically populated when you archive a plan.

Started Ended Start Weight End Weight Target Reason Outcome / Notes
✓ Saved

⚖️ Weight Log

Record your weight at each monitoring point. Try to weigh yourself at the same time of day, on the same scales. BMI is auto-calculated from your height in Master Record.

Date Weight (kg) BMI Trend Context Notes
✓ Saved

📊 Trend Summary

A quick snapshot of your current monitoring period. Click Refresh after adding entries.

Last Recorded Weight—
Highest Recorded—
Lowest Recorded—
Change Since Starting Weight—

💡 Understanding Weight Monitoring

Weight changes mean different things for different people. This section is for everyone.

⚖️ Weight Is Not Just About Diet

For many patients, weight changes are not within their control — they happen because of illness, surgery, treatment, or the body's response to a condition. This is not a lifestyle tracker. It is a clinical tool.

  • Unintended weight loss — common after surgery, with bowel conditions, cancer, TPN dependency, or when eating becomes difficult or impossible. The goal may be to stop losing, not to lose more.
  • Fluid retention (oedema) — the body holding excess water. Common in heart failure, kidney disease, liver disease, and steroid use. Weight can rise by several kg in 24–48 hours — this is not fat, it is fluid.
  • Steroid weight — corticosteroids cause fluid retention and fat redistribution. Weight gain on steroids is expected and is not a reflection of diet or lifestyle.
  • Cancer treatment — chemotherapy, radiotherapy, and immunotherapy all affect weight in different ways. Some patients gain fluid weight; others lose weight rapidly due to reduced appetite or absorption problems.
  • Eating disorder recovery — for some patients, weight restoration is a clinical goal. Monitoring should be done in partnership with your team, not obsessively.

🚨 When to Contact Your Team

  • You gain more than 2 kg in 48 hours — possible fluid retention, contact your team the same day
  • You lose more than 5% of your body weight in 3 months without trying
  • Your legs, ankles, or abdomen are swelling alongside weight gain
  • You are unable to eat or drink and your weight is falling
  • You are on a nutrition plan and not meeting your weight target
  • Any unexpected or unexplained weight change that concerns you

📏 BMI — Useful but Limited

BMI (Body Mass Index) = weight (kg) ÷ height (m)². Ranges: under 18.5 = underweight, 18.5–24.9 = healthy, 25–29.9 = overweight, 30+ = obese. However — BMI does not account for muscle mass, fluid retention, bone density, or the effect of medical conditions. A patient on TPN with a "normal" BMI may still be clinically malnourished. Always discuss your weight with your clinical team — never rely on BMI alone.

💡 Tips for Accurate Readings

  • Weigh yourself at the same time each day — ideally morning, after going to the toilet, before eating
  • Use the same scales each time
  • Wear similar clothing (or none)
  • Note anything unusual that day — illness, a large meal, a medical procedure — in the Notes column
  • Day-to-day fluctuations of 0.5–1 kg are normal — look for trends over weeks, not daily changes

Diabetes Management

Diagnosis

✓ Saved

Insulin & Devices

Leave blank if not applicable to your treatment.

✓ Saved

Oral & Injectable Medications (non-insulin)

Medication Dose Frequency Purpose Notes
✓ Saved

Blood Glucose Targets

✓ Saved

HbA1c Log

Date HbA1c (mmol/mol) HbA1c (%) Tested By Notes

To convert: mmol/mol ÷ 10.929 + 2.15 = %

✓ Saved

Hypo Management Plan

✓ Saved

Annual Review Tracker

Review Item Date Done Result / Notes Next Due Done By
✓ Saved

Complications History

✓ Saved

Foot Care

✓ Saved

ℹ️ Understanding Diabetes — Information Hub

This hub covers the key things every diabetic patient — and the clinicians who treat them — needs to know. Scroll through or use it as a quick reference at any appointment.

Type 1 vs Type 2 vs Other Types

Type 1 is an autoimmune condition where the immune system destroys the insulin-producing beta cells in the pancreas. It can start at any age. Insulin is always required for life — it is not caused by diet or lifestyle.

Type 2 is where the body either doesn't make enough insulin or doesn't respond to it properly (insulin resistance). It's the most common type and is often managed with diet, tablets, or injections. Some people with Type 2 need insulin over time.

Type 1.5 / LADA (Latent Autoimmune Diabetes in Adults) is a slow-onset autoimmune diabetes often mistaken for Type 2. People with LADA usually need insulin within a few years of diagnosis.

MODY (Maturity Onset Diabetes of the Young) is a rare genetic form that runs in families. It may be managed without insulin and often responds well to specific medications.

Gestational diabetes develops during pregnancy and usually resolves after birth, but significantly raises lifetime risk of Type 2.

What is HbA1c and why does it matter?

HbA1c measures your average blood glucose over the previous 2–3 months. It reflects how well your diabetes is controlled overall and helps predict long-term complication risk.

  • Below 48 mmol/mol (6.5%) — target for most people with Type 2 on tablets
  • 48–53 mmol/mol (6.5–7%) — typical target for Type 1 and insulin-treated Type 2
  • 53–64 mmol/mol (7–8%) — may be acceptable if hypo risk is a concern
  • Above 75 mmol/mol (9%) — significantly raised; increases risk of complications

HbA1c is checked every 3 months when newly diagnosed or adjusting treatment, and every 6–12 months once stable.

Time in Range (TIR)

If you use a continuous glucose monitor (CGM such as Libre or Dexcom), your device measures the percentage of time your glucose stays within your target range (usually 3.9–10.0 mmol/L). A TIR of 70% or above is the general target. TIR gives a more complete picture than HbA1c alone.

Hypo symptoms and the Rule of 15

A hypo (hypoglycaemic episode) means blood glucose is too low — usually below 4.0 mmol/L. Symptoms: shakiness, sweating, palpitations, confusion, dizziness, pale skin, feeling anxious or irritable. Severe hypos can cause unconsciousness.

The Rule of 15: Take 15g of fast-acting carbohydrates (3 glucose tablets, 150ml Lucozade, 200ml orange juice or a small carton). Wait 15 minutes and recheck. If still below 4.0, repeat. Once recovered, have a longer-acting snack (e.g. a biscuit or sandwich) to prevent a repeat dip.

Impaired hypo awareness: Some people stop feeling early hypo symptoms after many years of diabetes. If you think this applies to you, speak to your diabetes team — a DAFNE course or sensor use can help restore awareness.

When to call 999 / go to A&E immediately

  • Someone is unconscious or cannot swallow — never give food or drink; use GlucaGen or Baqsimi and call 999
  • GlucaGen or Baqsimi has been given — always call 999 even if the person recovers
  • DKA signs (Type 1 / LADA): deep or rapid breathing, fruity/acetone breath, vomiting, stomach pain, confusion, BG above 11 + ketones above 3.0 mmol/L → A&E immediately
  • HHS signs (Type 2): very high BG (often >30), extreme thirst, confusion, drowsiness — without significant ketones → A&E
  • Any episode of prolonged severe hypoglycaemia or loss of consciousness

Sick day rules

  • Never stop insulin when unwell — even if you are not eating, your body still needs background insulin
  • Check BG every 2–4 hours and test for ketones if on Type 1/LADA regimen
  • Stay hydrated — sip water or sugar-free fluids frequently
  • Contact your DSN or diabetes team if: BG stays persistently high, you cannot keep fluids down, ketones are rising above 1.5, or you feel very unwell
  • SGLT2 inhibitors (e.g. empagliflozin, dapagliflozin, canagliflozin) should usually be paused when unwell and before surgery — called "sick day rules for flozins" — confirm with your team

Annual review — what to expect

Every person with diabetes should receive an annual review including: HbA1c, blood pressure, cholesterol (lipids), kidney function (eGFR and urine ACR), foot check, eye screening (retinal photography), BMI, and a review of medications and vaccinations. Make sure yours is being done — use the Annual Review Tracker in this section to log dates and results.

DVLA rules for drivers on insulin

  • You must notify the DVLA if you are treated with insulin — this is a legal requirement
  • Check BG before every drive and every 2 hours on journeys over 2 hours
  • Do not drive if BG is below 5.0 mmol/L — treat and wait at least 45 minutes after full recovery
  • Always carry fast-acting glucose within reach in the vehicle
  • Impaired hypo awareness may mean you are not permitted to drive — discuss with your team
  • Failure to notify the DVLA is a legal offence and can invalidate your insurance

Useful resources

  • Diabetes UK — support, information, helpline
  • JDRF UK — Type 1 diabetes charity
  • NHS — Diabetes overview
  • NHS Sick Day Rules (Type 1)
  • DVLA — Diabetes and driving

Heart Conditions

My Heart Diagnosis

✓ Saved

Anticoagulation & Antiplatelet Therapy

✓ Saved

Cardiac Medications

Medication Dose Frequency Reason Started Notes
✓ Saved

Blood Pressure Targets

✓ Saved

ECG & Rhythm Monitoring History

Date Test Type Result Location Notes
✓ Saved

Echocardiogram & Imaging Log

Date Test Type EF% Key Finding Hospital Notes
✓ Saved

Cardiac Blood Tests

Date Test Result Units Normal Range Hospital / Lab Notes
✓ Saved

Cardiac Device (Pacemaker / ICD / CRT / ILR)

✓ Saved

Cardiac Procedures Log

Date Procedure Hospital Outcome Notes
✓ Saved

Cardiac Rehabilitation

✓ Saved

ℹ️ Understanding Heart Conditions — Information Hub

This section covers a wide range of heart and cardiovascular conditions — from irregular heart rhythms (arrhythmias) and heart failure to coronary artery disease, valve problems, and cardiac devices. Use it to record your diagnosis, medications, test results, and procedures in one place so any clinician has the full picture immediately.

Key Terms Explained

  • EF (Ejection Fraction) — the percentage of blood the heart pumps out with each beat. A normal EF is above 55%. Below 40% is classified as reduced (HFrEF). Your echo report will include this figure.
  • NYHA Class — the New York Heart Association classification of heart failure severity, from Class I (no symptoms with ordinary activity) to Class IV (symptoms at rest).
  • HFrEF — Heart Failure with Reduced Ejection Fraction. The heart muscle is weak and pumps less blood than normal.
  • HFpEF — Heart Failure with Preserved Ejection Fraction. The heart pumps normally but the muscle is stiff, so less blood fills between beats.
  • AF (Atrial Fibrillation) — an irregular, often fast heart rhythm caused by chaotic electrical signals in the upper chambers of the heart. It significantly increases stroke risk, which is why anticoagulation is usually recommended.
  • SVT (Supraventricular Tachycardia) — episodes of fast heart rate originating above the ventricles. Usually not dangerous but can be very uncomfortable.
  • VT (Ventricular Tachycardia) — a fast rhythm originating in the lower chambers. Can be life-threatening if sustained.
  • NT-proBNP / BNP — blood markers released when the heart is under strain. Raised levels indicate heart failure or worsening cardiac function. Used to diagnose and monitor heart failure.
  • MACE (Major Adverse Cardiovascular Events) — a term used in research and clinical notes to describe heart attack, stroke, or cardiovascular death.
  • LVAD (Left Ventricular Assist Device) — a mechanical pump implanted in the chest to help the weakened left ventricle pump blood. Used in advanced heart failure.
  • CRT (Cardiac Resynchronisation Therapy) — a special pacemaker that coordinates the beating of both ventricles, used in certain types of heart failure to improve pumping efficiency.

🚨 When to call 999 / go to A&E

  • Chest pain lasting more than 15 minutes not relieved by GTN spray — could be a heart attack. Call 999 immediately. Do not drive yourself.
  • Suspected heart attack signs: central crushing chest pain, pain spreading to arm/jaw/back, sweating, breathlessness, nausea, sudden cold clammy skin.
  • Sustained ventricular tachycardia (VT) — fast racing heartbeat with dizziness, near-collapse, or loss of consciousness.
  • Acute heart failure: sudden severe breathlessness lying flat, unable to speak in sentences, pink frothy sputum (coughing up pink/white foam) — call 999.
  • Syncope (collapse / fainting) with known VT, WPW, or Long QT — always call 999.
  • New AF with haemodynamic compromise — fast AF causing very low blood pressure, severe breathlessness, or chest pain — A&E immediately.
  • ICD shock — if your defibrillator fires, always contact your cardiac team or go to A&E, even if you feel fine afterwards.

Managing Your Heart Condition Day-to-Day

Take your medications every day. Many cardiac medications (such as beta-blockers, ACE inhibitors, and anticoagulants) must not be stopped suddenly without medical advice. Missing doses can destabilise your heart rhythm or increase clot risk.

Salt and fluid restriction in heart failure: If you have heart failure, your team may advise limiting salt to <2g per day and fluid intake to 1.5–2 litres per day. This reduces the workload on the heart and helps prevent fluid build-up (oedema).

Daily weighing (heart failure): Weigh yourself at the same time each morning, after emptying your bladder and before eating. A weight gain of 2kg (about 4.5 lbs) in 48 hours or 3kg in a week usually means fluid is building up — contact your heart failure nurse or GP promptly.

Home blood pressure monitoring: Record readings at the same time daily (morning before medications is best). Take three readings and use the average. Share your readings with your cardiology team at each appointment.

Exercise and cardiac rehab: Cardiac rehabilitation is one of the most effective treatments after a heart attack, heart failure diagnosis, or cardiac procedure. If you have not been offered it, ask your GP or cardiologist. Phase 3 supervised exercise is usually done in a gym or hospital setting with trained staff.

DVLA rules after MI or ICD: You must not drive for at least 4 weeks after a heart attack (1 week if no intervention and no symptoms or complications). If you have an ICD implanted, you may not drive for 6 months (unless implanted for primary prevention, in which case 1 week applies). You must notify the DVLA. Failure to do so can invalidate your insurance and is a legal offence. Always confirm with your cardiologist before returning to driving.

Useful Resources

  • British Heart Foundation (bhf.org.uk) — information, support, helpline (0300 330 3311)
  • NHS — Heart failure overview and self-management
  • Arrhythmia Alliance (heartrhythmcharity.org.uk) — heart rhythm disorders support
  • AF Association (atrialfibrillation.org.uk) — AF-specific resources and patient stories
  • Pumping Marvellous Foundation — heart failure patient charity, peer support and information

Kidney & Renal Health

Kidney Diagnosis

✓ Saved

Kidney Transplant (if applicable)

✓ Saved

Fluid & Dietary Restrictions

✓ Saved

GFR & Kidney Function Trend

Date eGFR (ml/min/1.73m²) Creatinine (µmol/L) Urea (mmol/L) Urine ACR (mg/mmol) Tested At Notes
✓ Saved

Blood Results Log

Date Test Result Units Normal Range Notes
✓ Saved

Urine Results Log

Date Test Type Result Protein Blood Leucocytes Nitrites Notes
✓ Saved

Blood Pressure Monitoring

✓ Saved

Dialysis

✓ Saved

📋 Dialysis Session Log

Log each dialysis session — useful for home HD and PD patients tracking fluid removal, blood pressure, and access issues. Bring this log to every renal clinic appointment.

Date Duration Wt Before (kg) Wt After (kg) UF Removed (ml) BP Before BP After Access Used Any Issues
✓ Saved

Renal Procedures Log

Date Procedure Hospital Outcome Notes
✓ Saved

Renal Medications

✓ Saved

ℹ️ Kidney & Renal Health — Information Hub

Your kidneys filter your blood, remove waste, and balance fluids and minerals. This hub explains key kidney terms in plain English and tells you when to seek urgent help.

Understanding Kidney Disease

Your two kidneys filter around 200 litres of blood every day, removing waste products (like creatinine and urea) in your urine. When the kidneys are damaged, waste builds up in the blood. Chronic Kidney Disease (CKD) means the kidneys have been damaged or working at reduced capacity for 3 months or more. It is graded in stages (1–5) based on how well the kidneys are filtering (eGFR). Most people with early CKD have no symptoms — it is often found on routine blood tests.

Acute Kidney Injury (AKI) is a sudden drop in kidney function — often triggered by dehydration, infection, medication, or a blockage. With prompt treatment most AKI is reversible, but repeated AKI can accelerate CKD progression.

Key Terms Explained

  • eGFR (Estimated Glomerular Filtration Rate): A blood test result (in ml/min/1.73m²) that estimates how well your kidneys are filtering. Normal is above 90. It is used to stage CKD and track progression over time.
  • Creatinine: A waste product produced by muscles and filtered by the kidneys. A rising creatinine usually means the kidneys are working less well. Normal range varies by age, sex, and muscle mass.
  • ACR (Albumin:Creatinine Ratio): A urine test measuring how much protein (albumin) is leaking into the urine. Healthy kidneys keep protein in the blood. Higher ACR indicates more kidney damage and is used alongside eGFR to stage CKD.
  • Kt/V: A measure of dialysis adequacy — how much waste is removed per session. A Kt/V of 1.2 or above is the NHS target for haemodialysis.
  • AVF (Arteriovenous Fistula): A surgically created connection between an artery and vein in the arm, used for dialysis access. It is the preferred access type — it lasts longer and has fewer infection risks than a central line.
  • ADPKD: Autosomal Dominant Polycystic Kidney Disease — an inherited condition where cysts grow in the kidneys, gradually reducing their function.
  • AKI vs CKD: AKI is a sudden (acute) drop in kidney function — often reversible. CKD is a long-term (chronic) reduction that progresses slowly over years.
  • Nephrotic syndrome: Heavy protein loss in urine causing swelling (oedema), low blood protein, and high cholesterol. Caused by glomerular (filter) damage.
  • Nephritic syndrome: Blood and protein in urine, hypertension, and reduced GFR — caused by inflammation of the kidney filters (glomerulonephritis).

CKD Stages at a Glance

StageeGFR (ml/min/1.73m²)What it means
1≥90Kidney damage with normal or near-normal function
260–89Mild reduction in function
3a45–59Mild to moderate reduction
3b30–44Moderate to severe reduction
415–29Severe reduction — plan for dialysis/transplant
5<15Kidney failure — dialysis or transplant needed

🚨 When to Call 999 / Go to A&E

  • Sudden severe reduction in urine output — passing very little or no urine could indicate AKI or obstruction.
  • Severe swelling (face, hands, lungs) — sudden worsening oedema, especially breathlessness, may indicate fluid overload.
  • Chest pain with fluid overload — could indicate pulmonary oedema (fluid on the lungs), a medical emergency.
  • Confusion or seizure — severe uraemia (waste product build-up) can cause altered consciousness.
  • Dialysis access emergency — a blocked, infected, or bleeding fistula or dialysis line needs urgent assessment.
  • Signs of peritonitis (PD patients) — cloudy PD fluid, severe abdominal pain, fever — go to A&E immediately.

Living Well with Kidney Disease

  • Fluid and diet: Follow your team's fluid, potassium, phosphate, and sodium restrictions carefully — these directly affect your kidney function and safety.
  • Blood pressure: Keeping BP well-controlled is one of the most effective ways to slow CKD progression. Take antihypertensive medications as prescribed.
  • Avoid NSAIDs: Ibuprofen, naproxen, and other NSAIDs (anti-inflammatories) can worsen kidney function significantly. Always check with your team before taking any new medication.
  • Contrast dye caution: Tell any imaging department you have CKD before any CT or MRI with contrast — some contrast agents can damage kidneys.
  • Vaccinations: CKD and immunosuppressed patients (transplant) should keep vaccinations up to date, including annual flu and COVID-19 vaccines.
  • Urgent review: If you develop a fever, vomiting, diarrhoea, or are unable to take your medications, contact your kidney team — dehydration and infection can rapidly worsen kidney function.

Useful Resources

  • Kidney Care UK: kidneycareuk.org — patient support, information, and helpline.
  • Kidney Research UK: kidneyresearchuk.org — research news and patient resources.
  • NHS CKD Information: nhs.uk/conditions/kidney-disease
  • National Kidney Federation: kidney.org.uk — peer support and information for kidney patients.
  • PKD Charity: pkdcharity.org.uk — dedicated support for polycystic kidney disease patients.

Stroke & Neurological Health

Primary Neurological Diagnosis

✓ Saved

Additional Neurological Conditions Log

Condition Date Diagnosed Status Notes
✓ Saved

Stroke / TIA History

Date Event Type Side Affected Admitted To Thrombolysis Thrombectomy Outcome Notes
✓ Saved

Stroke Risk Factors

✓ Saved

Secondary Prevention

✓ Saved

Neurological Medications

Medication Dose Frequency Reason Started Notes
✓ Saved

Neurological Investigations Log

Date Investigation Key Finding Hospital Consultant Notes
✓ Saved

Rehabilitation Involvement

✓ Saved

Functional Status & Disability

✓ Saved

Driving & DVLA

✓ Saved

Aids, Adaptations & Care Needs

✓ Saved

ℹ️ Stroke & Neurological Health — Information Hub

This hub covers stroke, TIA, epilepsy, MS, Parkinson's, and the many other conditions that affect the brain, spinal cord, and nerves. Use it to understand key terms in plain English and to know when to seek urgent help.

Understanding Stroke & Neurological Conditions

The nervous system — the brain, spinal cord, and nerves — controls everything your body does. Neurological conditions can range from a one-off event (like a stroke or TIA) to long-term progressive conditions (like MS, Parkinson's, or MND). Each type affects people differently. Many people live well with neurological conditions when they have the right support, medication, and rehabilitation in place.

Stroke happens when the blood supply to part of the brain is cut off — either by a blockage (ischaemic stroke, about 85% of strokes) or by a bleed (haemorrhagic stroke, about 15%). Brain cells begin to die within minutes, which is why speed of treatment is critical. TIA (Transient Ischaemic Attack) causes the same warning symptoms but they resolve within 24 hours — it is a serious warning sign that a full stroke may follow and requires urgent assessment.

Key Terms Explained

  • TIA (Transient Ischaemic Attack): Often called a "mini-stroke". Stroke-like symptoms that resolve within 24 hours. It is a medical emergency — the risk of a full stroke is highest in the hours and days following a TIA. Call 999 or go to A&E immediately.
  • FAST: The NHS stroke recognition acronym — Face drooping, Arm weakness, Speech difficulty, Time to call 999. Symptoms can also include sudden vision loss, sudden severe headache, and sudden loss of balance.
  • Thrombolysis: A clot-busting drug (alteplase or tenecteplase) given by IV drip to dissolve a clot in an ischaemic stroke. Must be given within 4.5 hours of symptom onset. Time is brain.
  • Thrombectomy: A procedure where a catheter is passed through a blood vessel to physically remove a large clot causing a stroke. Can be done up to 24 hours after onset in selected patients. Highly effective when eligible.
  • mRS (Modified Rankin Scale): A 0–6 scale measuring disability after stroke. 0 = no symptoms; 5 = severe disability; 6 = death. Used to measure recovery and in clinical decisions.
  • Barthel Index: A 0–100 scale measuring functional independence in daily activities (eating, bathing, dressing, mobility). Higher = more independent.
  • Aphasia: Difficulty producing or understanding language — caused by damage to language areas of the brain. Expressive aphasia = difficulty speaking. Receptive aphasia = difficulty understanding. Does not affect intelligence.
  • Dysarthria: Slurred or unclear speech caused by weakness of the muscles used for speech. Different from aphasia — the person knows what they want to say but has difficulty producing the sounds.
  • Dysphagia: Difficulty swallowing — a common complication after stroke. A swallowing assessment by SALT is essential. Untreated dysphagia can lead to aspiration pneumonia.
  • RRMS (Relapsing-Remitting MS): The most common form of MS — periods of new or worsening symptoms (relapses) followed by partial or full recovery (remission).
  • PPMS (Primary Progressive MS): A gradual worsening of symptoms from the start, without clear relapses and remissions.
  • Focal seizure: A seizure that starts in one area of the brain. The person may remain conscious (aware) or lose consciousness (impaired awareness). Can cause unusual sensations, movements, or behaviours in one part of the body.

🚨 FAST — Act Immediately

Call 999 immediately if you notice any of these signs — in yourself or anyone else:

  • Face: Has their face drooped on one side? Can they smile? Is one eye or corner of the mouth drooping?
  • Arms: Can they raise both arms and keep them up? Is one arm weak or numb?
  • Speech: Is their speech slurred, garbled, or are they unable to speak or understand what you're saying?
  • Time: Call 999 immediately. Do not wait to see if symptoms improve. Do not drive to A&E — call an ambulance.

Also call 999 for:

  • Sudden severe headache — the worst headache of your life, especially if sudden onset ("thunderclap"). Can indicate subarachnoid haemorrhage.
  • Sudden vision loss — complete loss of vision in one eye, or loss of half the visual field.
  • Sudden loss of balance or coordination — especially with other FAST symptoms.
  • A first seizure or a prolonged seizure lasting more than 5 minutes — call 999. Status epilepticus (seizure lasting more than 30 minutes, or seizures without recovery between them) is a medical emergency.
  • New or worsening neurological symptoms in a known patient — sudden severe worsening in MS, Parkinson's, or other neurological conditions warrants urgent review.

After a Stroke — What to Expect

First hours: Time is brain. The faster treatment starts, the better the outcome. In the first hours, the priority is identifying stroke type (CT scan), starting thrombolysis if eligible, and stabilising the patient on a specialist stroke unit.

Early rehabilitation: Stroke rehab begins as soon as the patient is medically stable — often within 24–48 hours. Early supported discharge to continue rehab at home is now standard practice for many stroke patients and leads to better outcomes than remaining in hospital.

Secondary prevention: After a stroke, preventing a second one is the priority. This usually involves antiplatelet or anticoagulant therapy, a statin, blood pressure treatment, and lifestyle changes. Stopping these medications without medical advice significantly increases the risk of a second stroke.

Recovery timeline: Most recovery happens in the first 3–6 months, but improvement can continue for years. The brain's ability to reorganise itself (neuroplasticity) means that with sustained effort and rehabilitation, many people continue to make gains long after the acute event.

Epilepsy — Safe Living Tips

  • Take your medication every day at the same time. Missing doses is the most common cause of breakthrough seizures. Never stop anti-epileptic drugs without medical advice — this can trigger status epilepticus.
  • Bathing safely: Take showers rather than baths where possible. If you have uncontrolled seizures and must use a bath, never lock the door, keep the water shallow, and ensure someone knows you are bathing.
  • Driving rules: In the UK, you must stop driving and notify the DVLA if you have a seizure while conscious. You can usually reapply after 12 months seizure-free. The rules are different for sleep-only seizures — check with your neurologist and the DVLA.
  • Keep a seizure diary: Record every seizure — date, time, duration, type, and any possible trigger. This is one of the most useful tools for your epilepsy team when reviewing your medication.
  • Rescue medication: If prescribed, know how and when to use your rescue medication (e.g. Midazolam buccal liquid, rectal diazepam). Ensure your family or carers know too.

Useful Resources

  • Stroke Association: stroke.org.uk — information, local support groups, and helpline (0303 3033 100).
  • Different Strokes: differentstrokes.co.uk — support for younger stroke survivors.
  • MS Society: mssociety.org.uk — information, helpline, and local branches for people with MS.
  • Parkinson's UK: parkinsons.org.uk — support, information, and local groups for Parkinson's patients and carers.
  • Epilepsy Action: epilepsy.org.uk — comprehensive epilepsy information and helpline (0808 800 5050).
  • Headway: headway.org.uk — support for people affected by brain injury, including stroke.
  • MND Association: mndassociation.org — support and information for people living with motor neurone disease.

Liver Health

Liver Diagnosis

✓ Saved

Alcohol History (if relevant)

✓ Saved

Liver Transplant (if applicable)

✓ Saved

Viral Hepatitis (B & C)

Enable the panels below if you have or have had Hepatitis B or Hepatitis C.

🦠 Hepatitis B

✓ Saved

🦠 Hepatitis C

✓ Saved

Liver Function Tests Log

Date ALT (U/L) AST (U/L) ALP (U/L) GGT (U/L) Bilirubin (µmol/L) Albumin (g/L) Tested At Notes
✓ Saved

Additional Blood Results Log

Date Test Result Units Notes
✓ Saved

Imaging & Surveillance Log

Date Investigation Key Finding FibroScan (kPa) Hospital Notes
✓ Saved

Varices & Portal Hypertension

✓ Saved

Current Liver Medications

Medication Dose Frequency Reason Started Notes
✓ Saved

Liver Procedures Log

Date Procedure Hospital Outcome Notes
✓ Saved

Hepatic Encephalopathy

✓ Saved

ℹ️ Liver Health — Information Hub

The liver is the body's main processing organ — it filters blood, produces bile, regulates blood clotting, stores energy, and processes medications. Understanding your liver condition helps you work with your clinical team and stay on top of monitoring.

Understanding Liver Disease

  • Fatty liver (NAFLD/MASLD) Fat accumulates in liver cells. Often linked to obesity, diabetes, or high alcohol intake. Can progress to inflammation (NASH) and then cirrhosis.
  • Hepatitis Inflammation of the liver — caused by viruses (B, C), alcohol, autoimmune disease, or medications. Chronic hepatitis can lead to scarring over many years.
  • Cirrhosis Severe scarring of the liver where normal tissue is replaced by fibrous scar tissue. The liver still functions at first (compensated) but may fail to cope (decompensated).
  • Liver failure The liver can no longer perform its essential functions. Can be acute (sudden) or the end stage of chronic disease. May require transplant assessment.

Key Terms Explained

  • ALT / AST Liver enzymes — raised levels suggest liver cell damage or inflammation.
  • ALP / GGT Enzymes indicating bile duct problems or liver disease. GGT is also raised by alcohol.
  • Bilirubin A breakdown product of red blood cells. High levels cause jaundice (yellow skin/eyes).
  • Albumin A protein made by the liver. Low albumin suggests the liver is struggling to function.
  • INR (Prothrombin time) Measures blood clotting. A raised INR means clotting is impaired — a sign of poor liver function.
  • MELD score A scoring system (6–40) that predicts 3-month survival in liver disease. Higher = more severe. Used to prioritise transplant lists.
  • Child-Pugh score Another scoring system (A/B/C) for cirrhosis severity, based on bilirubin, albumin, INR, ascites, and encephalopathy.
  • FibroScan An ultrasound-based scan that measures liver stiffness (kPa). Higher values suggest more fibrosis/cirrhosis. Non-invasive alternative to biopsy.
  • Varices Enlarged veins in the oesophagus or stomach caused by high blood pressure in the liver (portal hypertension). Can bleed suddenly and severely.
  • Ascites Fluid building up in the abdomen due to portal hypertension and low albumin. Causes abdominal bloating and discomfort.
  • Hepatic encephalopathy (HE) Confusion or drowsiness caused by toxins (e.g. ammonia) building up when the liver cannot clear them. Can range from subtle (covert) to severe (coma).
  • SVR (Sustained Virological Response) In Hepatitis C, this means the virus is undetectable 12 weeks after completing treatment — effectively cured.
  • TIPSS A stent inserted through the liver to join two blood vessels, reducing portal pressure. Used for refractory ascites or variceal bleeding.

🚨 When to Go to A&E or Call 999

  • Vomiting blood — bright red or "coffee ground" vomit. Could be a variceal bleed — call 999 immediately.
  • Black, tarry stools (melaena) — this is blood that has passed through the gut. A&E urgently.
  • Sudden severe confusion, agitation, or unresponsiveness — may be grade 3–4 hepatic encephalopathy.
  • Severe abdominal pain — especially if abdomen is tense or rigid. Could indicate spontaneous bacterial peritonitis (SBP).
  • Rapidly developing jaundice — yellowing of skin and eyes that gets worse quickly.
  • Fever with ascites — possible infected ascites (SBP), which is life-threatening without prompt antibiotics.

Living with Liver Disease

  • Alcohol abstinence — for alcohol-related liver disease, stopping alcohol completely gives the liver the best chance to recover and can significantly slow progression.
  • Diet — if you have cirrhosis with ascites, a low-salt diet helps reduce fluid build-up. Adequate protein is important to prevent muscle wasting — do not restrict protein without dietitian advice.
  • Medications — avoid NSAIDs (ibuprofen, naproxen) as they can cause kidney failure and GI bleeding in cirrhosis. Always check with your hepatologist before starting new medications.
  • Paracetamol — low doses are generally safer than NSAIDs for liver patients, but do not exceed 2g/day in cirrhosis.
  • Monitoring — regular LFTs and AFP surveillance (every 6 months in cirrhosis) to screen for liver cancer. Attend all hepatology appointments.
  • Vaccination — Hepatitis A and B vaccines are recommended for all patients with chronic liver disease.

Useful Resources

  • British Liver Trust — britishlivertrust.org.uk — information, support groups, Be Loud for Liver campaign.
  • Liver4Life — peer support for people living with liver disease.
  • Hepatitis C Trust — hepctrust.org.uk — Hepatitis C testing, treatment access, patient stories.
  • PBC Foundation — pbcfoundation.org.uk — support for Primary Biliary Cholangitis patients.
  • PSC Support — pscsupport.org.uk — support for Primary Sclerosing Cholangitis patients.
  • NHS Liver Disease — nhs.uk/conditions/liver-disease

🚨 Allergies & Anaphylaxis

Allergy Overview

✓ Saved

Allergy Log

Allergen Type Specific Allergen Severity Reaction Type Confirmed By Date Confirmed Notes
✓ Saved

Reaction History

Date Allergen / Trigger Severity Treatment Given Hospital Admission Notes
✓ Saved

EpiPen / Adrenaline Auto-Injector

✓ Saved

My Anaphylaxis Action Plan

✓ Saved

Immunotherapy / Desensitisation

Allergen Type Start Date Current Dose / Stage Status Next Appointment Notes
✓ Saved

Specialist Review Log

Date Consultant Hospital Outcome / Notes
✓ Saved

About Allergies & Anaphylaxis

An allergy is an immune system reaction to a substance (allergen) that is harmless to most people. Anaphylaxis is the most severe form — a life-threatening reaction that requires emergency treatment with adrenaline.

Allergy vs. Intolerance — what is the difference?

  • Allergy — involves the immune system. Even a tiny amount of the allergen can trigger symptoms, including anaphylaxis.
  • Intolerance — does NOT involve the immune system (e.g. lactose intolerance). Usually causes digestive discomfort rather than life-threatening reactions. Cannot cause anaphylaxis.

Anaphylaxis — call 999 immediately if you notice:

  • Throat tightening or swelling — difficulty swallowing or speaking
  • Breathing difficulty — wheezing, gasping, or feeling like you cannot breathe
  • Severe drop in blood pressure — dizziness, collapse, or loss of consciousness
  • Rapid or weak pulse
  • Pale or blue skin
  • Any of the above following exposure to a known allergen — do not wait to see if it improves

How to use an EpiPen — 3 steps

  1. Pull off the blue safety cap. Do not put your thumb over the orange end.
  2. Press the orange tip firmly against your outer thigh — it can be used through clothing. Hold for 10 seconds.
  3. Remove and massage the area for 10 seconds — then call 999 immediately. Always go to hospital even if you feel better. A second dose can be given after 5 minutes if symptoms return.

Antihistamines vs. Adrenaline

  • Antihistamines (e.g. Cetirizine, Chlorphenamine) — treat mild to moderate reactions. They work slowly and cannot stop anaphylaxis.
  • Adrenaline (EpiPen) — the only first-line treatment for anaphylaxis. Acts within minutes. Always use first if anaphylaxis is suspected — antihistamines come second.
  • Steroids — given to reduce the risk of a delayed (biphasic) reaction. Hospital staff will decide when to use them.

NHS Allergy Services

Your GP can refer you to an NHS allergy clinic for skin prick testing, blood tests (specific IgE / RAST), and oral food challenges to identify triggers. Ask for a referral if you have had an anaphylactic reaction or carry an EpiPen.

Useful Organisations

  • Anaphylaxis UK — anaphylaxis.org.uk — leading UK charity for people at risk of anaphylaxis. Free resources, helpline, and EpiPen training materials.
  • Allergy UK — allergyuk.org — allergy helpline, factsheets, and support for all allergy types including food, drug, insect, and environmental.
  • NHS — Allergies overview — nhs.uk/conditions/allergies

🤝 Carer Information

Named Carers

✓ Saved

Additional Carers

Name Relationship Phone Role / When they cover Notes
✓ Saved

My Care Needs

✓ Saved

Care Tasks

Care Task Frequency Time of Day Special Instructions
✓ Saved

Carer's Own Health & Wellbeing

✓ Saved

Respite Care

✓ Saved

Support Services & Contacts

Service / Organisation Contact Name Phone Role / What they provide Notes
✓ Saved

🔗 Invite a Carer to Access Your Passport

Enter the email address of the person you want to give access to. They must have (or create) an account on this site. Once they click the invite link, they can switch into your passport from their own Section Index.

👥 Active Carer Access

Email Carer Name Access Status
Loading…

ℹ️ Carer Information — What You Need to Know

A carer is anyone who provides unpaid support to a family member, friend, or partner who could not manage without that help. Carers play a vital role in patient safety — this section helps clinicians understand who supports you and what happens if that support is disrupted.
  • Unpaid carer — a family member or friend who provides support without payment. There are around 5.7 million unpaid carers in England. They are not the same as paid care workers.
  • Paid carer / personal assistant (PA) — a care worker employed through a care agency or directly by the patient (often via Direct Payments). PAs are employed by the patient themselves.
  • Carer's Assessment — carers aged 18+ have a legal right to a Carer's Assessment from their local council. This looks at the carer's own wellbeing, needs, and what support they might need. It is free and separate from any assessment of the patient. Ask your GP or local council to refer for one.
  • Carer's Allowance — a weekly payment for carers who provide at least 35 hours of care per week and earn under the threshold. It is worth checking eligibility even if the carer is also receiving other benefits. Check at gov.uk/carers-allowance.
  • Carer's Passport (NHS) — some NHS trusts offer a Carer's Passport, which allows carers to stay with the patient in hospital beyond normal visiting hours, use staff facilities, and be involved in care decisions. Ask the ward team if one is available.
  • Respite care — a planned break for the carer while the patient receives care from another source. Respite can be funded by the local council (via a Carer's Assessment), a charity, or arranged privately. Without regular respite, carer burnout is a serious risk.
  • Emergency planning — what happens if your carer is suddenly unwell or unavailable? Having a named emergency backup carer and an emergency respite contact means you are not left without support in a crisis. Share this information with your GP and social worker.
  • Carer's own health — carers are more likely to experience depression, anxiety, and physical health problems. Encourage your carer to stay registered with a GP, have their own health checks, and access support services in their own right.
  • Direct Payments — if you are eligible for local authority care funding, you can choose to receive Direct Payments instead of a council-arranged service. This means you manage the money yourself and can employ a PA of your choice. Your social worker can advise.
  • Carers UK — free advice, information, and peer support for carers. Helpline: 0808 808 7777. Website: carersuk.org
  • Local carers centres — most areas have a local carers centre offering one-to-one support, training, emergency funds, and wellbeing activities for carers. Search carersuk.org/find-support to find your local service.
If you are admitted to hospital, tell the ward team who your carer is and whether you depend on them for essential tasks like medication management, stoma care, or tube feeding. This helps the team plan a safe discharge and ensures your carer is included in conversations about going home.

🕊️ End of Life & DNACPR

Preferred Place of Death

Advance Care Plan (ACP)

Lasting Power of Attorney (LPA)

DNACPR / ReSPECT

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) is a medical decision recorded by a doctor that CPR should not be attempted if your heart stops or you stop breathing. It is not a general withdrawal of care — all other treatments continue.

ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is the modern replacement used by most NHS trusts. It records your priorities, preferences, and what emergency treatments are recommended.

A DNACPR notice at home should ideally be a pink A4 form kept somewhere visible (e.g. on the fridge) so emergency services can see it quickly.

Advance Decision to Refuse Treatment (ADRT)

Palliative Care Team

Organ & Tissue Donation

Funeral Wishes

ℹ️ End of Life Planning — What You Need to Know

Planning ahead for end-of-life care is one of the most important things a person with a complex or long-term condition can do. It ensures your wishes are known, reduces distress for your family, and means clinicians can care for you in line with your values — even if you can no longer speak for yourself.
  • DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) — a medical decision, recorded by a doctor, that CPR should not be attempted if your heart stops or you stop breathing. It is not a general withdrawal of care — all other treatments continue normally. A pink A4 form kept somewhere visible at home (e.g. on the fridge) means emergency services can see it quickly.
  • ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) — the modern replacement for DNACPR used by most NHS trusts. It records your priorities, preferences, and what emergency treatments are recommended — covering far more than CPR alone. Ask your GP or consultant about completing one.
  • Advance Care Plan (ACP) — a written record of your wishes, values, and preferences for future care. Not legally binding, but carries significant moral weight with clinicians. Should be shared with your GP, family, and care team and kept somewhere accessible.
  • ADRT (Advance Decision to Refuse Treatment) — a legally binding document allowing you to refuse specific treatments (including CPR, ventilation, or clinically assisted nutrition) in advance, even if you later lose the ability to communicate. For life-sustaining treatment refusals, it must be in writing, signed, and witnessed. Templates available free from Compassion in Dying (compassionindying.org.uk).
  • LPA — Health & Welfare (Lasting Power of Attorney) — allows a named person (your "attorney") to make decisions about your health and personal welfare if you lose mental capacity. Can only be used once you lack capacity (unlike Property & Financial LPA). Must be registered with the Office of the Public Guardian (OPG) before it can be used — registration takes several months, so don't delay.
  • LPA — Property & Financial — a separate LPA covering finances, bank accounts, property, and bills. Can be used while you still have capacity if you choose. Register both LPAs at gov.uk/lasting-power-attorney.
  • Preferred Place of Death — documenting where you wish to die (home, hospice, care home, hospital). Most people wish to die at home; having this documented significantly increases the likelihood your wishes will be respected. Tell your GP, district nurse, and family.
  • Palliative care vs. end of life care — palliative care supports anyone with a life-limiting illness at any stage and focuses on quality of life and symptom control. End of life care specifically refers to the last months, weeks, or days. You can access palliative care long before you reach end of life.
  • Organ donation — England moved to an opt-out (deemed consent) system in 2020 (Max and Keira's Law). If you have not opted out, you are considered to have agreed to donate. However, your family's views are still taken into account. Register your decision (opt in, opt out, or note limitations) at organdonation.nhs.uk.
  • When to have these conversations — ideally when you are well, not in a crisis. Your GP, consultant, or palliative care team can help. Hospices offer advance care planning support for anyone with a serious illness — you do not need to be imminently dying to access this.
  • Compassion in Dying — free ADRT and advance care plan templates, plus a helpline (0800 999 2434). Website: compassionindying.org.uk
  • Dying Matters — resources for talking about death, dying, and bereavement. Website: dyingmatters.org
  • Office of the Public Guardian — register LPAs, check an attorney's authority, report concerns. Website: gov.uk/opg
If you are admitted to hospital in an emergency, clinical teams will look for evidence of a DNACPR or ReSPECT form. Having a copy on your person, in your health passport QR export, or with your GP record can make a critical difference in ensuring your wishes are respected at a moment when you may not be able to speak for yourself.

🧠 Counselling & Therapy

Therapist Details

CBT (Cognitive Behavioural Therapy) — helps change unhelpful thought patterns. Recommended by NICE for depression, anxiety, OCD, and PTSD.

DBT (Dialectical Behaviour Therapy) — focuses on emotional regulation, distress tolerance, and interpersonal skills. Often used for borderline personality disorder (BPD).

EMDR (Eye Movement Desensitisation & Reprocessing) — evidence-based therapy for trauma and PTSD. Uses bilateral stimulation to process distressing memories.

CAT (Cognitive Analytic Therapy) — explores patterns developed in early life that affect current relationships and emotions.

Counselling / psychodynamic therapy — exploratory talking therapy helping you understand how past experiences affect present feelings and relationships.

IAPT — NHS Improving Access to Psychological Therapies. Provides free CBT and guided self-help. You can self-refer at www.nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies.

Crisis Support Contacts

Session Log

Record each therapy session — useful for tracking progress, spot-patterns, and preparing for reviews.

Date Session # Format Mood Before (0–10) Mood After (0–10) Key themes Homework set Notes

Therapy Goals

Goal description Priority Target date Status Notes

Progress & Outcome Measures

ℹ️ Counselling & Therapy — What You Need to Know

Talking therapies help you understand and manage thoughts, feelings, and behaviours that are causing distress. There are many different types, each with its own focus and evidence base. This hub explains the main options, how to access them, and what to expect.
  • CBT (Cognitive Behavioural Therapy) — explores the link between thoughts, feelings, and behaviours, and helps you develop practical strategies to challenge unhelpful patterns. NICE-recommended for depression, anxiety, OCD, PTSD, and many other conditions. Usually 6–20 structured sessions.
  • DBT (Dialectical Behaviour Therapy) — combines CBT with mindfulness and skills training in distress tolerance, emotional regulation, and interpersonal effectiveness. Originally developed for borderline personality disorder (BPD/EUPD) but also used for self-harm, eating disorders, and intense emotional dysregulation.
  • EMDR (Eye Movement Desensitisation & Reprocessing) — uses bilateral stimulation (eye movements, tapping, or audio tones) while recalling distressing memories, helping the brain process trauma differently. NICE-recommended for PTSD and complex trauma. Does not require you to talk in detail about what happened.
  • CAT (Cognitive Analytic Therapy) — explores patterns developed in early relationships that affect current thoughts, feelings, and behaviour. Typically 16–24 sessions; includes a written "reformulation letter" describing your patterns and goals.
  • Psychodynamic / psychoanalytic therapy — based on the idea that unresolved past experiences, often outside conscious awareness, affect present feelings and relationships. Focuses on insight and the therapeutic relationship as a vehicle for change. Can be open-ended or time-limited.
  • Person-centred counselling — the therapist provides unconditional positive regard, empathy, and honesty, creating a safe space for natural growth and self-understanding. Less structured than CBT; suitable for a wide range of difficulties.
  • ACT (Acceptance and Commitment Therapy) — mindfulness-based; focuses on accepting difficult thoughts and feelings rather than fighting them, and committing to actions aligned with your values. Increasingly used for chronic illness, pain, and health anxiety.
  • MBCT (Mindfulness-Based Cognitive Therapy) — combines CBT with mindfulness meditation. NICE-recommended for preventing relapse in recurrent depression. Usually delivered as an 8-week group programme.
  • Schema therapy — targets deep-rooted patterns ("schemas") from childhood that drive current difficulties. Often used for long-standing personality difficulties and complex trauma.
  • IAPT / NHS Talking Therapies — the NHS free psychological therapies service. You can self-refer without a GP referral in most areas. Offers CBT, guided self-help, group therapy, and counselling. Wait times vary by area. Self-refer at: nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies
  • PHQ-9 (Patient Health Questionnaire) — a 9-item questionnaire measuring depression severity. Scored 0–27: 0–4 minimal, 5–9 mild, 10–14 moderate, 15–19 moderately severe, 20–27 severe. Used at the start of and throughout therapy to track progress.
  • GAD-7 (Generalised Anxiety Disorder scale) — a 7-item questionnaire measuring anxiety severity. Scored 0–21: 0–4 minimal, 5–9 mild, 10–14 moderate, 15–21 severe. Widely used in NHS settings.
  • CORE-10 — a 10-item measure of general psychological distress including depression, anxiety, trauma, and risk. Often used by counselling services and IAPT.
  • What to expect from a first session — usually an assessment: your background, current difficulties, and what you hope to achieve. You don't have to talk about everything immediately. It's okay to ask about the therapist's training, approach, and experience. If it doesn't feel like a good fit, it's okay to try someone different.
  • Finding a therapist — NHS (free via IAPT, self-refer); charitable sector (MIND, local counselling services — often low-cost at £10–30/session); private (typically £50–120/session). Always check that a private therapist is registered with BACP (British Association for Counselling and Psychotherapy), UKCP, or BPS. Find a registered therapist at bacp.co.uk/therapist-finder.
  • Mind — mental health charity offering local services, online support, and information. mind.org.uk | Infoline: 0300 123 3393
  • Samaritans — free, 24/7 emotional support for anyone in distress. Call 116 123 (free, any time). samaritans.org
Living with a complex or chronic physical health condition significantly increases the risk of depression and anxiety — not as a sign of weakness, but as a natural response to pain, uncertainty, loss, and exhaustion. Therapy is not just for people with diagnosed mental health conditions; it is for anyone who is struggling and would benefit from professional support. You deserve that support.

🤧 Common & Seasonal Health

Episode Log

Record each illness episode so you can spot patterns and report accurately to your GP — for example, if you keep getting the same infection repeatedly.

Date Started Illness / Condition Severity Duration How Managed Recovery Notes
✓ Saved

Acute Medication Notes

Use this space to note any antibiotics, antivirals, or other acute medicines you have taken for recent illnesses — including the reason, dose, and dates. This helps you report accurately at GP or hospital appointments.

✓ Saved

Common Cold / URTI

🟡 Key symptoms
  • Runny or blocked nose
  • Sneezing, mild sore throat
  • Mild cough, headache
  • No fever or mild temperature
  • Usually lasts 7–10 days
🟢 Self-care at home
  • Rest and drink plenty of fluids
  • Paracetamol or ibuprofen for aches
  • Decongestant nasal spray (pharmacy)
  • Honey and lemon for sore throat
  • Antibiotics do NOT help a cold
🔵 Call NHS 111 if…
  • Symptoms last more than 3 weeks
  • Symptoms suddenly worsen
  • You are immunocompromised
  • You develop a high fever or chest pain
🔴 Call 999 / urgent help if…
  • Difficulty breathing or very fast breathing
  • Severe chest pain
  • Lips or fingertips turning blue
  • Confusion or not waking properly

Flu / Influenza

🟡 Key symptoms
  • Sudden high temperature (38°C+)
  • Severe body aches and tiredness
  • Headache, chills, loss of appetite
  • Dry cough, runny nose
  • Symptoms hit fast — within hours
🟢 Self-care at home
  • Rest — stay home, especially Day 1–3
  • Drink plenty of fluids to prevent dehydration
  • Paracetamol or ibuprofen for fever and aches
  • Annual flu vaccine reduces severity
  • Most people recover in 1–2 weeks
🔵 Call NHS 111 if…
  • You are over 65, pregnant, or immunocompromised
  • You have a long-term health condition
  • Symptoms are not improving after 1 week
  • You develop a new or worsening cough
🔴 Call 999 / urgent help if…
  • Difficulty breathing or shortness of breath
  • Chest pain or pressure
  • Confusion, seizure, or loss of consciousness
  • Signs of sepsis (fever + rapid pulse + confusion)

Sore Throat / Tonsillitis

🟡 Key symptoms
  • Pain swallowing, scratchy throat
  • Red, swollen tonsils (possibly with white patches)
  • Swollen glands in the neck
  • Hoarse voice, mild fever
  • Usually caused by a virus — antibiotics rarely needed
🟢 Self-care at home
  • Paracetamol or ibuprofen for pain
  • Warm drinks with honey and lemon
  • Medicated throat lozenges or sprays (pharmacy)
  • Cold ice lollies can soothe the throat
  • Gargle with warm salty water
🔵 Call NHS 111 if…
  • Sore throat lasts more than 1 week
  • You have 4–5 throat infections per year
  • You cannot swallow fluids
  • You are immunocompromised
🔴 Call 999 / urgent help if…
  • Difficulty breathing or noisy breathing
  • Drooling and unable to swallow at all
  • Severe one-sided throat swelling (possible abscess)
  • Muffled voice and stiff neck — may indicate epiglottitis

Sinusitis

🟡 Key symptoms
  • Pain/pressure around cheeks, forehead, or eyes
  • Blocked or runny nose (green/yellow discharge)
  • Reduced sense of smell
  • Headache worse on bending forward
  • Toothache in upper jaw
🟢 Self-care at home
  • Saline nasal rinse or spray
  • Paracetamol or ibuprofen for pain
  • Steam inhalation (bowl of hot water + towel)
  • Decongestant nasal spray — max 7 days
  • Most sinusitis clears in 2–3 weeks
🔵 Call NHS 111 if…
  • Symptoms last more than 10 days or keep recurring
  • Symptoms are severe and not improving with self-care
  • You have chronic sinusitis (more than 12 weeks)
🔴 Call 999 / urgent help if…
  • Swelling or redness around the eye
  • Severe headache with stiff neck or light sensitivity
  • Vision changes or double vision
  • Confusion or high fever with sinus pain

Ear Infection — Middle Ear (Otitis Media)

🟡 Key symptoms
  • Earache — often throbbing pain
  • Hearing loss in affected ear
  • Fever (especially in children)
  • Feeling of fullness in the ear
  • Discharge if the eardrum has perforated
🟢 Self-care at home
  • Paracetamol or ibuprofen for pain and fever
  • Warm flannel held gently to the ear
  • Most clear on their own within 3 days
  • Do not insert anything into the ear canal
🔵 Call NHS 111 if…
  • Pain is severe or not improving after 3 days
  • Discharge from the ear
  • Recurring ear infections (may need referral)
  • Significant hearing loss persists
🔴 Call 999 / urgent help if…
  • Redness and swelling behind the ear (mastoiditis)
  • Facial weakness or drooping
  • Sudden severe dizziness with vomiting
  • Stiff neck and high fever

Ear Infection — Outer Ear (Swimmer's Ear / Otitis Externa)

🟡 Key symptoms
  • Itching inside the ear canal
  • Pain — made worse by pulling the ear
  • Redness or discharge from the ear canal
  • Muffled hearing or a feeling of blockage
  • Often follows swimming or humid weather
🟢 Self-care at home
  • Keep the ear dry — avoid swimming until cleared
  • Paracetamol or ibuprofen for pain
  • Do not insert cotton buds or objects into the ear
  • Ear drops prescribed by GP are usually needed
🔵 Call NHS 111 if…
  • Pain is severe or not improving after 48 hours
  • You have diabetes or are immunocompromised
  • Discharge is heavy, bloody, or smells strongly
  • Recurring infections or significant hearing loss
🔴 Call 999 / urgent help if…
  • Severe spreading redness around the ear
  • Facial swelling or difficulty opening jaw
  • High fever with rapidly worsening symptoms
  • You have diabetes with severe ear pain (risk of malignant otitis externa)

Conjunctivitis (Eye Infection)

🟡 Key symptoms
  • Red, itchy, or irritated eye
  • Watery or sticky (yellow/green) discharge
  • Crusting on lashes on waking
  • Gritty or burning sensation
  • Usually affects both eyes (viral) or one eye (bacterial)
🟢 Self-care at home
  • Wipe crusts away with clean cotton wool dipped in cooled boiled water
  • Wash hands frequently — very contagious
  • Remove contact lenses until cleared
  • Antibiotic eye drops from pharmacy if bacterial
  • Viral conjunctivitis clears on its own in 1–2 weeks
🔵 Call NHS 111 if…
  • Not improving after 2 weeks
  • Newborn baby with eye discharge
  • Symptoms in a person who wears contact lenses
  • Recurring episodes
🔴 Call 999 / urgent help if…
  • Severe eye pain or sudden vision loss
  • Eye very sensitive to light
  • Eye injury or foreign body suspected
  • Severe swelling around the eye (orbital cellulitis)

Nosebleed / Epistaxis

🟡 Key facts
  • Most nosebleeds come from the front of the nose and stop within 10–15 minutes
  • Common triggers: dry air, nose picking, blowing hard, minor injury
  • More common on blood thinners (warfarin, apixaban, rivaroxaban)
  • Posterior bleeds (further back) are less common but bleed more heavily
🟢 First aid at home
  • Sit upright and lean slightly forward (not back)
  • Pinch the soft part of your nose firmly for 10–15 minutes without releasing
  • Breathe through your mouth
  • Apply a cold compress to the bridge of your nose
  • Do NOT tilt your head back — blood may go down your throat
🔵 Call NHS 111 if…
  • Bleeding does not stop after 20–30 minutes of constant pressure
  • You are on anticoagulants (blood thinners)
  • Nosebleeds are frequent (several times a week)
  • A child under 2 has a nosebleed
🔴 Go to A&E if…
  • Bleeding is very heavy and will not stop
  • You swallow a large amount of blood and feel sick or faint
  • You feel dizzy, have chest pain, or are pale and sweating
  • The bleed followed a serious blow to the head or face

Hay Fever / Allergic Rhinitis

🟡 Key symptoms
  • Sneezing, runny or blocked nose
  • Itchy, red, or watery eyes (allergic conjunctivitis)
  • Itchy throat, mouth, nose, or ears
  • Fatigue and headache on high-pollen days
  • Seasonal pattern: tree (Mar–May), grass (May–Jul), weed (Jun–Sep)
🟢 Self-care
  • Non-drowsy antihistamine tablets (cetirizine, loratadine) — pharmacy
  • Steroid nasal spray (Beconase, Pirinase) — start 2–4 weeks before pollen season
  • Antihistamine eye drops for itchy eyes
  • Check pollen count daily; shower and change clothes after going outside
  • Wear wrap-around sunglasses outdoors
🔵 See your GP if…
  • Symptoms not controlled by pharmacy treatments
  • Symptoms occur year-round (may indicate allergy to dust mites or pets)
  • Your asthma worsens during pollen season
  • To discuss immunotherapy (desensitisation)
🔴 Important to know
  • Hay fever can trigger asthma attacks — always carry your reliever inhaler in pollen season
  • If you have other allergies, record your full allergy history in S28 Allergies & Anaphylaxis
  • Call 999 if you have facial swelling, difficulty breathing, or signs of anaphylaxis

Shingles (Herpes Zoster)

🟡 Key symptoms
  • Tingling, burning, or shooting pain on one side of the body or face — often before any rash appears
  • A painful, blistering rash that wraps around one side of the torso, face, or eye area
  • Sensitivity to touch, fever, headache, and fatigue
  • The blisters can spread chickenpox to people who have never had it
🟢 Treatment
  • Antiviral tablets (aciclovir, valaciclovir) — most effective within 72 hours of rash starting
  • Paracetamol for pain; keep the rash clean and dry
  • Avoid contact with pregnant women, newborns, and immunocompromised people until blisters crust over
  • NHS shingles vaccine (Shingrix) offered from age 70
🔵 See your GP urgently if…
  • You think you have shingles — get antivirals started as soon as possible
  • You are immunocompromised (e.g. on steroids, chemotherapy, or have HIV)
  • You are pregnant
  • Severe pain persists after rash clears (postherpetic neuralgia)
🔴 Go to A&E if…
  • The rash is on or near your eye (ophthalmic shingles) — risk of serious sight damage
  • You have weakness, confusion, or difficulty moving limbs
  • You are severely immunocompromised and the rash is spreading rapidly

Gastroenteritis / Stomach Bug

🟡 Key symptoms
  • Sudden diarrhoea and/or vomiting
  • Stomach cramps, nausea
  • Mild fever (37.5–38.5°C)
  • Headache and muscle aches
  • Usually caused by norovirus — lasts 1–3 days
🟢 Self-care at home
  • Stay home and rest — very contagious
  • Drink plenty of fluids: water, diluted juice, oral rehydration salts
  • Eat plain foods when you can manage: toast, rice, banana
  • Paracetamol for fever and aches
  • Do not share towels, food, or utensils
🔵 Call NHS 111 if…
  • Diarrhoea or vomiting lasting more than 48 hours
  • Signs of dehydration: dark urine, dizziness, dry mouth
  • Blood in stool or vomit
  • You are elderly, immunocompromised, or have a serious condition
🔴 Call 999 / urgent help if…
  • Severe dehydration — not passing urine, sunken eyes, rapid heart rate
  • Large amount of blood in stool or vomit
  • Severe abdominal pain (not just cramps)
  • Confusion, weakness, or collapse

Headaches — Tension, Cluster & Migraine

Tension Headache

🟡 Symptoms
  • Dull, pressing band around head
  • Both sides, not pulsing
  • Mild to moderate — activity not affected
  • No nausea or visual disturbance
🟢 Self-care
  • Paracetamol or ibuprofen
  • Hydrate, rest in a quiet room
  • Gentle neck stretches
  • Identify triggers: screen time, posture, stress

Cluster Headache

🟡 Symptoms
  • Severe pain around one eye — often wakes you
  • Red/watering eye, blocked or runny nostril on same side
  • Attacks last 15 min–3 hrs; may recur daily in clusters
  • Often occurs at the same time each day
🔵 Medical help needed
  • See GP if you suspect cluster headaches
  • Prescribed treatments: sumatriptan injection, high-flow oxygen
  • Preventive medication (verapamil) may be prescribed
  • Do not manage alone — treatment is very effective

Migraine

🟡 Symptoms
  • Moderate to severe one-sided pulsing pain
  • Nausea and/or vomiting
  • Sensitivity to light and noise
  • Aura (visual disturbances, tingling) in some people
  • Lasts 4–72 hours
🟢 Self-care / treatment
  • Paracetamol or ibuprofen — take early
  • Triptans (e.g. sumatriptan) if prescribed
  • Lie down in a dark, quiet room
  • Keep a diary of triggers (hormones, food, sleep, stress)
🔴 Headache red flags — call 999 immediately if…
  • "Thunderclap" headache — worst headache of your life, comes on in seconds (possible subarachnoid haemorrhage)
  • Headache with stiff neck, light sensitivity, and rash (possible meningitis)
  • New headache in someone over 50 with scalp tenderness (possible temporal arteritis)
  • Headache with confusion, weakness, or speech problems
  • Headache after a head injury

Cold Sores & Mouth Ulcers

Cold Sores (Herpes Simplex Virus HSV-1)

🟡 Symptoms
  • Tingling or itching at the lip — warning sign (prodrome)
  • Small fluid-filled blisters, usually on the lip
  • Blisters burst, crust, and heal over 7–10 days
  • Triggers: illness, sun, stress, hormonal changes
🟢 Self-care
  • Antiviral cream (aciclovir — available at pharmacy) — apply at tingling stage
  • Do not touch the sore then touch your eyes
  • Avoid kissing or sharing utensils when active
  • Sunscreen on lips can prevent sun-triggered outbreaks

Mouth Ulcers (Aphthous Ulcers)

🟡 Symptoms
  • Painful white or yellow sore inside the mouth
  • Red border around the ulcer
  • Made worse by spicy or acidic foods
  • Usually heal on their own in 1–2 weeks
🟢 Self-care
  • Antiseptic mouthwash or gel (pharmacy)
  • Avoid spicy/acidic foods
  • Soft toothbrush and gentle brushing
  • See GP if ulcers last more than 3 weeks or recur frequently
🔴 See your GP urgently if…
  • A mouth ulcer or sore lasts more than 3 weeks
  • Painless white or red patch in the mouth
  • Swelling, hardness, or numbness in or around the mouth
  • Repeated cold sores affecting the eye (corneal involvement)

Toothache / Dental Pain

🟡 Key symptoms
  • Throbbing or constant pain in a tooth or jaw
  • Pain worse with cold, hot, or sweet foods
  • Swelling or tenderness around the tooth or gum
  • Sensitivity when biting
  • Bad taste in mouth (sign of infection)
🟢 Self-care at home
  • Paracetamol or ibuprofen for pain
  • Clove oil applied to the tooth (pharmacy)
  • Rinse with warm salty water
  • Avoid very hot, cold, or sweet foods
  • Contact a dentist — toothache needs treatment, not just pain relief
🔵 Call NHS 111 if…
  • You cannot see a dentist within 24 hours
  • Pain is severe and not responding to painkillers
  • You have a dental abscess (swollen gum, fever)
  • 111 can direct you to an NHS emergency dentist
🔴 Call 999 / urgent help if…
  • Facial swelling spreading to the eye, neck, or floor of mouth
  • Difficulty swallowing or breathing due to swelling
  • High fever with severe dental pain (spreading abscess)

Urinary Tract Infection (UTI)

🟡 Key symptoms
  • Burning or pain when passing urine
  • Needing to pass urine more often than usual
  • Dark, cloudy, or strong-smelling urine
  • Pain in the lower abdomen or back
  • Feeling unwell, tired, or feverish
🟢 Self-care at home
  • Drink plenty of water (at least 2 litres/day)
  • Paracetamol or ibuprofen for pain
  • Avoid alcohol and caffeine
  • Most lower UTIs need antibiotic treatment — contact GP or pharmacy (PharmacyFirst scheme)
  • Cystitis sachets (sodium citrate) can relieve discomfort while waiting for treatment
🔵 Call NHS 111 if…
  • Symptoms do not improve after antibiotic treatment
  • You are pregnant
  • You are immunocompromised or have a urinary catheter
  • You are male (UTIs in men need investigation)
  • Blood in urine
🔴 Call 999 / urgent help if…
  • High fever with back/loin pain and rigors (shaking) — kidney infection
  • Signs of sepsis: confusion, rapid breathing, pale/mottled skin
  • Complete inability to pass urine (urinary retention)

Fever & Dehydration

🟡 Key symptoms
  • Fever: temperature of 38°C or above
  • Shivering, sweating, feeling cold
  • Headache and muscle aches
  • Dehydration signs: dark urine, dry mouth, dizziness, headache
🟢 Self-care at home
  • Paracetamol or ibuprofen to reduce fever
  • Drink plenty of fluids — water, diluted squash, oral rehydration salts
  • Stay cool — light clothing, cool room, tepid flannel on forehead
  • Rest and monitor temperature every 4–6 hours
🔵 Call NHS 111 if…
  • Temperature above 39.5°C
  • Fever lasting more than 5 days
  • You have a long-term condition, are immunocompromised, or are over 65
  • You are dehydrated and cannot keep fluids down
🔴 Call 999 / urgent help if…
  • Fever with a non-blanching rash (press a glass — if rash stays visible, call 999)
  • Confusion, severe drowsiness, or seizure
  • Stiff neck with high fever and dislike of light
  • Difficulty breathing, rapid breathing, or chest pain with fever
  • Signs of sepsis: confusion + rapid pulse + breathing fast + feels extremely unwell

⚠️ Appendicitis & Acute Abdomen

Appendicitis is a medical emergency. If you have sudden, worsening pain in your lower right abdomen — especially with nausea, vomiting, or fever — go to A&E or call 999 immediately. Do not take painkillers and wait. Do not eat or drink. Time matters.

What is appendicitis? The appendix is a small pouch attached to the large intestine in the lower right abdomen. When it becomes infected or inflamed (appendicitis), it can rupture within 24–72 hours, causing a life-threatening infection (peritonitis).

🟠 Warning signs (go to A&E now)
  • Pain starting around your belly button, moving to lower right abdomen
  • Pain that gets steadily worse (not coming and going)
  • Pain worsens when you move, cough, or press and release the area
  • Nausea and vomiting
  • Fever (38°C+)
  • Loss of appetite
  • Diarrhoea or inability to pass wind
🔴 Call 999 immediately if…
  • Severe, sudden-onset abdominal pain (like a blow to the stomach)
  • Abdomen is rigid or board-like to touch
  • Extremely high fever with severe pain
  • Signs of shock: pale, clammy, faint, rapid weak pulse
  • Pain has briefly improved then returned much worse (may mean rupture)
ℹ️ Treatment

Appendicitis is treated by surgical removal of the appendix (appendicectomy) — usually keyhole surgery (laparoscopic). Most people recover fully within 2–4 weeks. In mild cases, antibiotics alone may be tried first. Do not delay going to A&E if you suspect appendicitis.

Quick Help Guide — What to Do When You Are Unwell

Use this guide when you are unsure whether to call 999, NHS 111, or see your GP. When in doubt — always seek help. It is always better to ask.

🚨
Call 999
  • Difficulty breathing or not breathing
  • Chest pain or pressure
  • Collapse or loss of consciousness
  • Seizure / fit (new or prolonged)
  • Suspected stroke (face drooping, arm weak, speech slurred — FAST test)
  • Anaphylaxis or severe allergic reaction
  • Non-blanching rash with fever (meningitis)
  • Thunderclap headache
  • Severe dehydration + cannot keep fluids down
  • Signs of sepsis
📞
Call NHS 111
  • Illness that worries you but is not life-threatening
  • Symptoms not improving as expected
  • Unsure whether you need A&E or a GP
  • You need a same-day appointment and cannot get one
  • You need advice about medication
  • Out-of-hours GP advice
  • Mental health crisis (option 2 in most areas)
  • Dental pain — 111 can book an emergency dentist
📱 Call 111 or visit 111.nhs.uk
👨‍⚕️
See Your GP
  • Illness lasting longer than expected
  • Recurring infections or illnesses
  • Symptoms that keep coming back
  • Unusual symptoms you cannot explain
  • New UTI if you are male
  • Mouth ulcer lasting over 3 weeks
  • Headaches becoming more frequent or severe
  • Prescription needed (e.g. antibiotics, antivirals)
Also try: NHS PharmacyFirst scheme
NHS 111 Online → NHS Health A–Z → NHS PharmacyFirst → About Sepsis →

🫁 Respiratory Health

🩺 My Respiratory Conditions

Tick all conditions that apply — each selected condition will appear as a tab with its own dedicated tracking fields.

✓ Saved

My Respiratory Diagnosis

✓ Saved

🌬️ Asthma Action Plan

✓ Saved

🫁 Bronchiectasis Details

✓ Saved

🧬 Interstitial Lung Disease / IPF Details

✓ Saved

🟤 Sarcoidosis (Pulmonary) Details

✓ Saved

Peak Flow Log

Date Time Peak Flow (L/min) % of Personal Best Session Symptoms Notes
✓ Saved

Spirometry Results Log

Date FEV1 (L) FEV1% FVC (L) FVC% FEV1/FVC Ratio Reversibility Hospital / Clinic Notes
✓ Saved

Exacerbation / Flare Log

Date Started Date Resolved Trigger Severity Treatment Outcome Notes
✓ Saved

Inhaler & Respiratory Medications

✓ Saved

My Respiratory Team

✓ Saved

ℹ️ Information Hub — Respiratory Health

What is Asthma? Asthma is a common lung condition where the airways become inflamed and narrow, causing wheezing, breathlessness, chest tightness, and coughing. Around 5.4 million people in the UK have asthma. It is usually managed with inhalers and can be very well controlled with the right treatment.

What is Bronchiectasis? Bronchiectasis is a condition where the airways become permanently widened and damaged. This makes it harder to clear mucus, which can pool and cause repeated infections. It is managed with airway clearance physiotherapy, antibiotics during infections, and sometimes long-term antibiotics.

What is ILD / IPF? Interstitial Lung Disease (ILD) is a group of conditions that cause scarring (fibrosis) in the lung tissue. Idiopathic Pulmonary Fibrosis (IPF) is the most common and serious type. It causes progressive breathlessness that worsens over time. Anti-fibrotic medications (pirfenidone, nintedanib) can slow progression.

What is Sarcoidosis? Sarcoidosis causes small clumps of inflammatory cells (granulomas) to form in body tissues — most commonly the lungs. It is often self-limiting and may not need treatment, but in some people it becomes chronic and requires steroids.

  • FEV1 — Forced Expiratory Volume in 1 second. How much air you can breathe out in one second. A lower FEV1 means narrowed or obstructed airways.
  • FVC — Forced Vital Capacity. Total air you can breathe out after a full breath in. Used alongside FEV1 to diagnose obstructive vs restrictive patterns.
  • FEV1/FVC Ratio — Below 0.70 suggests obstructive disease (e.g. asthma, COPD). Normal = 0.75–0.80.
  • Peak Flow — A quick test of how fast you can breathe out. Measured in L/min. Your personal best is your own normal — use it as the baseline for your action plan.
  • Reversibility — If peak flow or FEV1 improves significantly after a bronchodilator (reliever inhaler), that suggests asthma rather than COPD.
  • Exacerbation — A flare-up when symptoms significantly worsen from your normal. Often triggered by infections, allergens, or cold air.
🚨 Call 999 immediately if:
  • Peak flow is below 33% of personal best
  • You cannot complete a full sentence
  • Lips, fingernails or skin are turning blue (cyanosis)
  • Reliever inhaler is not working after two doses
  • You are exhausted from the effort of breathing
📞 Call 111 or contact your GP urgently if:
  • Peak flow is between 33–50% of personal best
  • Symptoms are gradually worsening over several days
  • A course of oral steroids does not seem to be working
  • You are waking at night with breathlessness or wheeze

Useful links:
🔗 Asthma UK — asthma.org.uk
🔗 British Lung Foundation / Asthma + Lung UK — blf.org.uk
🔗 NHS — Asthma
🔗 NHS — Bronchiectasis

🍽️ Digestive & GI Health

🩺 My GI Conditions

Tick all conditions that apply — conditions with dedicated panels will appear as tabs with their own tracking fields.

Also applies to (recorded in general fields above):

Indeterminate Colitis Microscopic Colitis Diverticular Disease GORD / Acid Reflux Barrett's Oesophagus Chronic Pancreatitis Gastroparesis Short Bowel Syndrome
✓ Saved

My GI Diagnosis

✓ Saved

🔥 Crohn's Disease Details

✓ Saved

🩸 Ulcerative Colitis Details

✓ Saved

🌾 Coeliac Disease Details

✓ Saved

💨 IBS Details

✓ Saved

Surgical History (GI)

✓ Saved

Symptom & Flare Log

Date Started Date Resolved Symptom Pattern Severity Trigger Treatment Change Notes
✓ Saved

Endoscopy & Colonoscopy Log

Date Procedure Hospital Findings Biopsies H. Pylori Result Notes
✓ Saved

Blood Results Log

Date Test Result Units Reference Range Flag Notes
✓ Saved

GI Medications

✓ Saved

My GI Team

✓ Saved

Dietary & Nutrition Notes

✓ Saved

ℹ️ Information Hub — Digestive & GI Health

What is IBD? Inflammatory Bowel Disease (IBD) is a term for two chronic conditions that cause inflammation of the gut — Crohn's Disease and Ulcerative Colitis. Crohn's can affect any part of the digestive tract from mouth to anus. Ulcerative Colitis affects the colon (large bowel) only. Both cause symptoms including diarrhoea, abdominal pain, fatigue, and weight loss. IBD is not the same as IBS.

What is IBS? Irritable Bowel Syndrome (IBS) is a common functional gut disorder — meaning the gut works differently but there is no inflammation or damage visible on tests. Symptoms include abdominal cramps, bloating, diarrhoea, constipation, or alternating between them. It can be managed with diet, stress reduction, and medication but is not life-threatening.

What is Coeliac Disease? Coeliac disease is an autoimmune condition where eating gluten (a protein in wheat, barley, and rye) causes the immune system to attack the lining of the small bowel. This damages the villi (tiny finger-like projections that absorb nutrients), leading to malabsorption. A lifelong strict gluten-free diet is the only treatment.

What is GORD? Gastro-Oesophageal Reflux Disease occurs when stomach acid regularly travels back up into the oesophagus (food pipe), causing heartburn, regurgitation, and discomfort. Long-term untreated GORD can lead to Barrett's Oesophagus — a change in the lining of the oesophagus that slightly increases cancer risk and requires surveillance endoscopy.

What is Chronic Pancreatitis? Chronic pancreatitis is ongoing inflammation of the pancreas that causes permanent damage over time. It can lead to enzyme insufficiency (meaning food is not properly digested), chronic pain, and eventually diabetes. Common causes include excess alcohol and gallstones.

  • Calprotectin — A stool test that measures inflammation in the gut. Raised levels suggest IBD rather than IBS. Results above 50–200 µg/g are significant.
  • CRP — C-Reactive Protein. A blood marker of inflammation. Raised in IBD flares and infections.
  • Endoscopy (OGD) — A camera test looking at the oesophagus, stomach, and duodenum (upper GI tract).
  • Colonoscopy — A camera test looking at the entire large bowel and terminal ileum. Used to diagnose and monitor IBD.
  • Stricture — A narrowing of the bowel caused by scarring (in Crohn's). Can cause blockages and may need surgery or balloon dilation.
  • Fistula — An abnormal channel between the bowel and another organ or the skin surface. More common in Crohn's disease.
  • Remission — When symptoms are absent or minimal and inflammation is controlled. The goal of all IBD treatment.
  • Flare — A period when IBD becomes active and symptoms worsen. May need increased treatment.
🚨 Call 999 immediately if:
  • Significant rectal bleeding with dizziness or collapse
  • Severe abdominal pain with a rigid or board-like abdomen (could indicate perforation)
  • Signs of sepsis: high fever, shaking, rapid heart rate, confusion
📞 Contact your IBD team urgently if:
  • Significant fresh rectal bleeding (more than small amounts)
  • You are unable to eat or drink due to nausea or pain
  • Fever with diarrhoea — could be C. difficile or infection
  • A course of oral steroids is not controlling symptoms after 72 hours
  • You have lost more than 5% of your body weight during a flare

Useful links:
🔗 Crohn's & Colitis UK — crohnsandcolitis.org.uk
🔗 IBS Network — theibsnetwork.org
🔗 Coeliac UK — coeliac.org.uk
🔗 Guts UK — gutscharity.org.uk
🔗 NHS — Crohn's Disease
🔗 NHS — Ulcerative Colitis

🦴 Musculoskeletal & Pain

My MSK Diagnosis

✓ Saved

Investigations & Imaging

✓ Saved

Pain Log

Date Body Area Pain Score Pain Character Trigger Duration Relief Notes
✓ Saved

Flare / Exacerbation Log

Date Started Date Resolved Severity Trigger Treatment Used Outcome Notes
✓ Saved

Physiotherapy & Exercise

✓ Saved

Pain Medications

✓ Saved

Other Interventions

✓ Saved

ℹ️ Information Hub — Musculoskeletal & Pain

What is Osteoarthritis? Osteoarthritis (OA) is the most common form of arthritis in the UK, affecting over 8 million people. It occurs when the protective cartilage covering the ends of bones breaks down over time, causing pain, stiffness, and swelling. It most commonly affects the knees, hips, and hands. There is no cure, but symptoms can be managed with exercise, weight management, analgesia, and joint replacement when needed.

What is Fibromyalgia? Fibromyalgia is a long-term condition causing widespread musculoskeletal pain, fatigue, sleep problems, and cognitive difficulties ("fibro fog"). It is thought to involve central sensitisation — where the brain and nervous system amplify pain signals. There is no structural damage visible on scans or blood tests, which can make diagnosis frustrating. Treatment focuses on physical activity, sleep hygiene, and sometimes medication such as amitriptyline, duloxetine, or pregabalin.

What is CRPS? Complex Regional Pain Syndrome (CRPS) is a rare but very distressing condition involving disproportionate, persistent pain — usually in a limb — following an injury or procedure. The affected area may appear red or purple, be extremely sensitive to touch, or show changes in temperature or sweating. Early specialist intervention gives the best outcomes.

What is Neuropathic Pain? Neuropathic pain results from damage to or dysfunction of the nervous system rather than tissue injury. It is typically described as burning, shooting, stabbing, or tingling. It responds better to medications like gabapentin, pregabalin, amitriptyline, and duloxetine than to standard painkillers.

  • DMARD — Disease-Modifying Anti-Rheumatic Drug. Medications such as methotrexate or hydroxychloroquine that slow the progression of inflammatory arthritis rather than just relieving symptoms.
  • NSAID — Non-Steroidal Anti-Inflammatory Drug (e.g. ibuprofen, naproxen). Reduces inflammation and pain but can affect kidneys and stomach with long-term use — a PPI is often prescribed alongside.
  • Nociceptive pain — Pain arising from actual tissue damage (e.g. a fracture or inflamed joint). Usually dull, aching, or throbbing.
  • Neuropathic pain — Pain arising from nerve damage or dysfunction. Burning, shooting, tingling, or electric-shock-like quality.
  • Nociplastic pain — Pain arising from altered nociception without clear evidence of tissue damage or nerve injury. Central sensitisation is involved. Seen in fibromyalgia and CRPS.
  • Flare — A period when pain and other symptoms significantly worsen from baseline. Can last days to weeks.
  • Remission — A period of reduced or minimal symptoms. Goal of inflammatory arthritis treatment.
🚨 Call 999 or go to A&E immediately if:
  • Sudden severe back pain with weakness in both legs, loss of bladder or bowel control, or numbness in the groin/saddle area — this may be Cauda Equina Syndrome, which is a surgical emergency
  • A joint is hot, red, swollen, and you have a fever — this may be septic arthritis, which can destroy a joint within 24–48 hours if untreated
📞 Contact your GP or MSK team urgently if:
  • Back pain with unexplained weight loss, night sweats, or history of cancer
  • Sudden worsening of a previously stable condition
  • A joint becomes acutely more swollen and painful than usual (could be a crystal arthritis flare such as gout or pseudogout)

Useful links:
🔗 Versus Arthritis — versusarthritis.org
🔗 Fibromyalgia Action UK — fmauk.org
🔗 Pain UK — painuk.org
🔗 BackCare — backcare.org.uk
🔗 NHS — Osteoarthritis
🔗 NHS — Fibromyalgia

🧴 Skin Conditions

🩺 My Skin Conditions

Tick all conditions that apply — each selected condition will appear as a tab with its own dedicated tracking fields.

✓ Saved

My Skin Diagnosis

✓ Saved

🔴 Psoriasis Details

✓ Saved

🩹 Hidradenitis Suppurativa (HS) Details

✓ Saved

🌿 Eczema Details

✓ Saved

🌸 Rosacea Details

✓ Saved

💊 Acne Vulgaris Details

✓ Saved

🎨 Vitiligo Details

✓ Saved

💨 Urticaria (Chronic) Details

✓ Saved

🟤 Lichen Conditions

✓ Saved

Flare / Episode Log

Date Started Date Resolved Area Affected Severity Trigger Treatment Used Outcome Notes
✓ Saved

Skin Investigations Log

Date Investigation Result / Finding Hospital / Clinic Notes
✓ Saved

Topical Treatments

✓ Saved

Systemic Treatments

✓ Saved

Phototherapy & Specialist Procedures

✓ Saved

ℹ️ Information Hub — Skin Conditions

What is Psoriasis? Psoriasis is a common immune-mediated condition affecting approximately 2% of the UK population. It causes skin cells to multiply up to 10 times faster than normal, leading to raised, scaly plaques — most commonly on the scalp, elbows, knees, and lower back. It is not contagious. Around 1 in 3 people with psoriasis also develop psoriatic arthritis, which causes joint pain and stiffness.

What is Atopic Eczema? Atopic eczema (atopic dermatitis) is a chronic inflammatory skin condition caused by a combination of immune hypersensitivity and a defective skin barrier. This allows moisture to escape and irritants to penetrate. It causes dry, itchy, inflamed skin and often follows a flare-remission cycle. Common triggers include soaps, detergents, fabrics, heat, stress, and certain foods. Emollients (moisturisers) are the cornerstone of treatment.

What is Hidradenitis Suppurativa (HS)? HS is a chronic, painful inflammatory condition of the apocrine glands (found in areas of skin-to-skin contact such as the armpits, groin, and buttocks). It causes recurrent abscesses, boils, and nodules that can tunnel under the skin (sinus tracts). It is frequently misdiagnosed or delayed for years. Hurley staging (I–III) describes severity. Treatment ranges from antibiotics and biologics to surgery.

What is Rosacea? Rosacea is a common chronic condition causing facial redness, flushing, visible blood vessels, and sometimes papules and pustules (which can resemble acne). It is not caused by bacteria and does not respond to typical acne treatments. Common triggers include sunlight, alcohol, spicy food, hot drinks, and temperature extremes. There is no cure but symptoms can be managed with topical treatments, oral antibiotics, and lifestyle adjustments.

What is Vitiligo? Vitiligo is an autoimmune condition where the immune system destroys melanocytes — the cells that produce skin pigment — resulting in white patches on the skin. It can affect any area of the body including the face, hands, and genitals. It is associated with other autoimmune conditions, particularly thyroid disease. Treatment options include topical steroids, calcineurin inhibitors, phototherapy, and newer JAK inhibitor creams.

  • PASI score — Psoriasis Area and Severity Index. A score from 0–72 measuring extent and severity of psoriasis. A PASI of 10 or more is generally considered moderate-to-severe and may qualify for systemic treatment or biologics.
  • DLQI — Dermatology Life Quality Index. A 10-question tool measuring how much skin disease is affecting your quality of life. Used to justify systemic treatments on the NHS.
  • Hurley stage — Classification system for HS severity (I = mild, II = moderate, III = severe/widespread).
  • Emollient — A moisturiser that soothes and hydrates the skin. Applied frequently, especially after washing. The thicker the better — creams and ointments are generally more effective than lotions.
  • Topical steroid potency — Classified from mild (hydrocortisone 1%) to very potent (clobetasol propionate / Dermovate). Use the weakest that controls your symptoms. Very potent steroids should not be used on the face, groin, or armpits.
  • Biologic — An injectable medication that targets specific parts of the immune system. Used for moderate-to-severe psoriasis, HS, and atopic eczema when other treatments have failed. Requires regular monitoring.
  • Phototherapy — Controlled exposure to ultraviolet light (UVB or PUVA) under medical supervision. Usually given 2–3 times per week for 6–10 weeks. Effective for psoriasis, eczema, and vitiligo.
🚨 Call 999 or go to A&E immediately if:
  • Rapidly spreading red, hot skin covering a large area of the body — this may be erythroderma (erythrodermic psoriasis or eczema), a medical emergency involving fluid loss, hypothermia, and infection risk
  • Spreading redness, warmth, swelling, and streaking from a wound with fever — this suggests cellulitis spreading rapidly and may need IV antibiotics
📞 Contact your GP or dermatology team urgently if:
  • A skin lesion is changing rapidly in size, shape, or colour — especially if irregular, bleeding, or not healing
  • An HS abscess is very large, not responding to antibiotics, or causing systemic symptoms such as fever
  • Your usual treatments are no longer controlling your symptoms

Useful links:
🔗 Skin Support — skinsupport.org.uk
🔗 Psoriasis Association — psoriasis-association.org.uk
🔗 National Eczema Society — eczema.org
🔗 HS Hope — hshope.org
🔗 NHS — Psoriasis
🔗 NHS — Atopic Eczema

👁️ Eye & ENT / Sensory Health

📋 My Sensory Health Topics

Tick the topics that apply to you — the relevant detail cards will expand below. You do not need to fill in every topic.

✓ Saved

My Diagnosis

✓ Saved

🟢 Glaucoma Details

✓ Saved

🔵 Cataracts

✓ Saved

👁️ AMD Details

✓ Saved

👂 Hearing & Tinnitus

✓ Saved

🌀 Menière's & Vertigo

✓ Saved

😶 Bell's Palsy

✓ Saved

Intraocular Pressure (IOP) Log

Date Eye IOP Reading (mmHg) Measured By Drops Used at Time Notes
✓ Saved

Visual Acuity Record

✓ Saved

Hearing Test (Audiometry) Log

Date Test Type Result Summary Audiologist / Clinic Notes
✓ Saved

Specialist Appointments & Investigations

✓ Saved

Eye Drop Medications

Drop Name Eye Frequency Time of Day Started Notes
✓ Saved

Systemic Medications for Eye/Ear Conditions

Medication Dose Frequency Reason Notes
✓ Saved

Surgical & Procedural History

✓ Saved

Clinic Team

✓ Saved

ℹ️ Information Hub — Eye & ENT / Sensory Health

🚨 Call 999 or go to A&E immediately if you notice:
  • Sudden painless loss of vision or a curtain/shadow moving across your vision — this may be a retinal detachment, which is a sight-threatening emergency
  • Sudden onset of many new floaters together with flashes of light — urgent eye assessment needed; may indicate a posterior vitreous detachment with retinal tear
  • Painful red eye with blurred vision and seeing haloes around lights — this may be acute angle-closure glaucoma, which can cause permanent blindness within hours if untreated
  • Sudden profound hearing loss in one ear (especially if it happens overnight or very rapidly) — sudden sensorineural hearing loss is a medical emergency; steroids within 72 hours significantly improve recovery
  • Sudden facial weakness or drooping on one side — this may be Bell's Palsy (same-day steroid treatment improves outcome) or, crucially, a stroke. Use FAST: Face drooping, Arm weakness, Speech problems, Time to call 999

What is Glaucoma? Glaucoma is a group of eye conditions where the optic nerve (which connects your eye to your brain) becomes damaged, usually due to raised pressure inside the eye (IOP). It is often called the "silent thief of sight" because most people have no symptoms until significant damage has occurred. It is managed with eye drops to lower pressure, laser treatment, or surgery. Once lost, peripheral vision cannot be restored — which is why regular monitoring is essential.

What is AMD (Age-related Macular Degeneration)? AMD affects the macula — the central part of the retina responsible for sharp, detailed vision. Dry AMD progresses slowly; wet AMD is faster and needs urgent anti-VEGF injections (typically monthly or every few weeks) to prevent rapid sight loss. AMD does not cause complete blindness but can make reading, driving, and recognising faces very difficult. The Amsler grid is a simple self-monitoring tool — a grid of lines that should appear straight and evenly spaced; any new distortion or missing patches should be reported urgently.

What is BPPV? Benign Paroxysmal Positional Vertigo is the most common cause of vertigo. Tiny calcium crystals (otoliths) become displaced from one part of the inner ear into the balance canals, causing intense but brief spinning when you change head position. It is harmless but very distressing. The Epley manoeuvre — a series of guided head movements — repositions the crystals and resolves most cases rapidly. It can be done by a physiotherapist or GP.

What is Menière's Disease? Menière's Disease is caused by excess fluid (endolymph) in the inner ear, causing unpredictable attacks of intense vertigo (lasting 20 minutes to several hours), hearing loss, tinnitus, and a feeling of fullness in the ear. It tends to improve over time but can significantly affect quality of life. Betahistine is the most commonly prescribed medication. A low-salt diet, reducing caffeine, and managing stress can help reduce attack frequency.

What is Tinnitus? Tinnitus is the perception of noise (ringing, buzzing, whooshing, hissing) in one or both ears without an external source. It is extremely common and often associated with hearing loss. It is rarely a sign of a serious condition but can be very distressing. Management includes sound therapy, cognitive behavioural therapy (CBT), hearing aids, and tinnitus retraining therapy. Pulsatile tinnitus (beating in time with your pulse) should always be investigated promptly.

What is Bell's Palsy? Bell's Palsy is a sudden, usually one-sided weakness or paralysis of the facial muscles caused by inflammation of the facial nerve. It typically reaches its worst point within 48–72 hours. Prednisolone (steroids) started within 72 hours of onset significantly improve recovery. Eye care is crucial if the eyelid cannot close fully — lubricating eye drops and an eye patch at night prevent corneal damage. Most people recover fully within 3–6 months, though some have residual weakness.

  • IOP (Intraocular Pressure) — the pressure inside the eye. Normal range is roughly 10–21 mmHg. High IOP damages the optic nerve over time. Measured in clinic with a tonometer or air-puff machine.
  • Visual acuity — the sharpness of your vision. 6/6 is normal; 6/60 means you see at 6 metres what a person with normal vision sees at 60 metres. Driving in the UK requires at least 6/12 vision.
  • OCT scan — Optical Coherence Tomography. A painless, non-contact scan that produces detailed cross-sectional images of the retina and optic nerve, used to monitor AMD and glaucoma.
  • Visual field test (perimetry) — measures how much you can see to the sides without moving your eyes. Used to detect and monitor glaucoma damage.
  • Anti-VEGF injections — injections into the eye (intravitreal) that block the protein responsible for abnormal blood vessel growth in wet AMD. Given as day-case procedures, usually monthly initially.
  • Pure tone audiogram (PTA) — the standard hearing test. You press a button when you hear tones played at different pitches and volumes. Results are plotted on an audiogram and classified as normal, mild, moderate, severe, or profound loss.
  • Tympanometry — measures how well your eardrum moves in response to air pressure. Detects fluid behind the eardrum (glue ear), perforations, and Eustachian tube dysfunction.
  • BAHA — Bone-Anchored Hearing Aid. A surgically implanted device that transmits sound through bone directly to the inner ear, used when conventional hearing aids are unsuitable.
  • Synkinesis (Bell's Palsy) — involuntary simultaneous movement of facial muscles, such as the eye closing when smiling. Can occur as a complication of nerve regeneration after Bell's Palsy.
📞 Contact your specialist or GP urgently if:
  • Your vision suddenly becomes worse than your usual baseline
  • You notice new floaters or flashes (even without vision loss) — especially if you are short-sighted or have had previous retinal problems
  • A hearing aid or cochlear implant stops working and you are becoming isolated
  • Tinnitus is suddenly much louder or has changed character, especially in one ear only
  • You develop a severe attack of vertigo with new hearing loss — this may indicate a Menière's flare needing treatment
  • Your eye is not closing properly after Bell's Palsy — corneal damage can develop quickly without lubrication

Useful links:
🔗 RNIB (Royal National Institute of Blind People) — rnib.org.uk
🔗 Macular Society — macularsociety.org
🔗 Glaucoma UK — glaucoma.uk
🔗 Action on Hearing Loss — actiononhearingloss.org.uk
🔗 Tinnitus UK — tinnitus.org.uk
🔗 Ménière's Society — menieres.org.uk
🔗 NHS — Glaucoma
🔗 NHS — Age-related Macular Degeneration
🔗 NHS — Menière's Disease
🔗 NHS — Bell's Palsy

🧬 Autoimmune & Rheumatology

Condition-Specific Details

Which conditions apply to you? Select all that apply.

✓ Saved

My Diagnosis

Inflammatory Markers & Antibodies

Disease Activity Log

Date Condition Activity Level DAS28 Score Main Symptoms Action Taken Notes
✓ Saved

Blood Results Log

Date Test Result Units Normal Range Trend Notes
✓ Saved

Imaging Log

Date Imaging Type Body Area / Region Finding Reporting Hospital Notes
✓ Saved

Monitoring Schedule

✓ Saved

Conventional DMARDs

Drug Dose Frequency Route Started Monitoring Notes

Biologic & Targeted Therapies

Drug Drug Class Dose & Frequency Route Started Last Review Notes

Steroids

Rheumatology Team

✓ Saved

ℹ️ Information Hub — Autoimmune & Rheumatology

🚨 Call 999 or go to A&E immediately if:
  • Sudden loss of vision — may indicate GCA-related arteritis or uveitis; this is a same-day sight-threatening emergency
  • High fever + severe joint pain + rash — may indicate a systemic flare, septic arthritis, or infection
  • Chest pain or sudden breathlessness not otherwise explained — cardiac or pulmonary involvement (pericarditis, PAH, ILD)
  • Cauda equina symptoms — bladder/bowel dysfunction, saddle numbness, or rapidly progressive leg weakness; spinal disease emergency
  • Hot, red, extremely swollen single joint — suspect septic arthritis; can destroy a joint within 24–48 hours if untreated

What is Rheumatoid Arthritis (RA)? RA is a chronic autoimmune condition in which the immune system mistakenly attacks the lining of the joints (synovium), causing inflammation, pain, swelling, and stiffness — most commonly in the hands, wrists, and feet. Without treatment it can cause progressive joint damage. It is managed with DMARDs (e.g. methotrexate), biologics, and JAK inhibitors. Early treatment is key to preventing damage and achieving remission.

What is Sjögren's Syndrome? Sjögren's is an autoimmune condition where the immune system attacks the moisture-producing glands. The hallmark symptoms are severely dry eyes and dry mouth. It can also affect the joints, skin, kidneys, nerves, and lungs. It may occur alone (primary) or alongside another autoimmune condition such as RA or lupus (secondary).

What is Scleroderma (Systemic Sclerosis)? Systemic sclerosis is a rare autoimmune condition causing abnormal collagen production leading to thickening and hardening of the skin, and potentially involving internal organs including the lungs, heart, kidneys, and gut. Limited cutaneous scleroderma (CREST) tends to progress more slowly; diffuse cutaneous scleroderma can affect major organs more rapidly.

What is Polymyalgia Rheumatica (PMR)? PMR is an inflammatory condition causing aching and stiffness in the shoulders, neck, and hips, almost always in people over 50. It responds dramatically to prednisolone (steroid). Around 15–20% of people with PMR also develop Giant Cell Arteritis (GCA) — inflammation of the large arteries — which can cause sudden permanent vision loss if untreated.

What is Sarcoidosis? Sarcoidosis is an inflammatory condition where clusters of immune cells (granulomas) form in the organs, most commonly the lungs and lymph nodes. It can also affect the skin, eyes, heart, and nervous system. Many cases resolve on their own; others require prednisolone or second-line immunosuppressive therapy.

  • DAS28 — Disease Activity Score in 28 joints. Measures RA disease activity using joint counts, ESR/CRP, and patient's global assessment. Remission = score below 2.6.
  • RF & anti-CCP — Blood tests used to confirm RA. Anti-CCP is more specific; positive results indicate seropositive RA, which tends to be more aggressive.
  • DMARDs — Disease-Modifying Anti-Rheumatic Drugs. Medications such as methotrexate, hydroxychloroquine, and leflunomide that slow or halt disease progression rather than just managing pain.
  • Biologics — Targeted injectable or intravenous therapies that block specific inflammatory pathways (e.g. adalimumab blocks TNF; tocilizumab blocks IL-6; rituximab depletes B-cells).
  • JAK inhibitors — Oral targeted therapies (e.g. baricitinib, upadacitinib, tofacitinib) that block the JAK-STAT signalling pathway. A newer class alternative to biologics.
  • Uveitis — Inflammation inside the eye; a complication of AS, RA, Sjögren's, Behçet's, and sarcoidosis. Requires same-day ophthalmology assessment to prevent sight loss.
  • Raynaud's phenomenon — Vasospasm of small blood vessels causing fingers and toes to turn white then blue then red in cold or stress. Very common in scleroderma and Sjögren's.
  • HLA-B27 — A genetic marker on white blood cells found in approximately 90% of people with ankylosing spondylitis. Its presence supports diagnosis but is not conclusive alone.
  • ANA — Antinuclear Antibody; a general autoimmune marker. Positive in lupus, Sjögren's, scleroderma, and other connective tissue diseases — but also in healthy people at low titres.
📋 Monitoring reminders:
  • Methotrexate / leflunomide — monthly blood tests (FBC, LFTs, U&Es) while on treatment
  • Biologics — pre-screening for TB (Mantoux / IGRA) and hepatitis B/C before starting; avoid live vaccines while on treatment; report fevers promptly as infection risk is elevated
  • Hydroxychloroquine (Plaquenil) — annual eye check (colour vision / OCT retinal screen) for retinal toxicity, especially after 5 years of use
  • Long-term steroids — DEXA scan for osteoporosis, bone protection medication, blood glucose monitoring (steroid-induced diabetes risk)
  • JAK inhibitors — increased infection risk; MHRA advise caution in those over 65, smokers, or with cardiovascular risk factors

Useful links:
🔗 NRAS (National Rheumatoid Arthritis Society) — nras.org.uk
🔗 Versus Arthritis — versusarthritis.org
🔗 LUPUS UK — lupusuk.org.uk
🔗 Sarcoidosis UK — sarcoidosisuk.org
🔗 Scleroderma & Raynaud's UK — sruk.co.uk
🔗 NHS — Rheumatoid Arthritis
🔗 NHS — Polymyalgia Rheumatica

💉 Blood & Haematology

My Diagnosis

🔴 Key Safety Information (for clinicians)

My Haematology Team

✓ Saved

FBC & Blood Results Log

Date Test Result Units Flag Notes

Transfusion History

Date Product Units / Dose Hospital Reason Reaction Notes
✓ Saved

Current Medications

Drug Dose Frequency Route Start Date Notes

Anticoagulation

Factor Replacement (Haemophilia)

Bleeding & Crisis Log

Date Event Type Severity Treatment Given Hospital Admission Notes
✓ Saved

ℹ️ Information Hub — Blood & Haematology

🚨 Call 999 or go to A&E immediately if:
  • Severe bleeding that will not stop — especially internal bleeding, heavy haematuria (blood in urine), or gastrointestinal bleeding with dizziness or collapse
  • Sickle cell crisis with severe pain that cannot be managed at home — a vaso-occlusive crisis requires hospital-level analgesia and IV fluids
  • Acute chest syndrome in sickle cell — chest pain + breathlessness + fever: this is life-threatening and must be treated as an emergency
  • Signs of stroke — Face drooping, Arm weakness, Speech difficulty, Time to call 999 (FAST)
  • Fever ≥38°C with known neutropenia — this is a haematological emergency; infection can deteriorate within hours in an immunocompromised patient
  • Platelet count <10 with active bleeding in known ITP — risk of serious haemorrhage
  • Signs of haemolysis — very dark (cola-coloured) urine, sudden pallor, jaundice, and collapse may indicate an acute haemolytic reaction or aplastic crisis
  • Transfusion reaction during or shortly after a blood transfusion — severe chills, back pain, rapid fall in BP, or dark urine: stop the transfusion and call for immediate help

What are haematological conditions? Haematology covers disorders of the blood — including the red blood cells that carry oxygen, the white blood cells that fight infection, the platelets that help blood clot, and the plasma proteins (clotting factors) that prevent or enable bleeding. Conditions range from common anaemias to rare inherited disorders such as haemophilia and sickle cell disease, through to blood cancers such as leukaemia, lymphoma, and myeloma.

Sickle cell disease: An inherited condition where red blood cells become rigid and sickle-shaped, blocking small blood vessels and causing severe pain (vaso-occlusive crises), organ damage, anaemia, and increased infection risk. Management includes hydroxycarbamide (hydroxyurea) to reduce crises, penicillin prophylaxis (especially in childhood or after splenectomy), pneumococcal and meningococcal vaccinations, pain management, and in some cases exchange transfusions or stem cell transplant. Anyone with sickle cell presenting with chest pain, breathlessness, or fever needs immediate hospital assessment — acute chest syndrome can be fatal.

Haemophilia A & B: Inherited bleeding disorders caused by deficiency of clotting factor VIII (haemophilia A) or factor IX (haemophilia B). Factor level determines severity — severe (<1%) means spontaneous bleeding into joints and muscles; mild (5–40%) means bleeding only after trauma or surgery. Treatment is factor replacement either on-demand (when bleeding occurs) or as prophylaxis (regular infusions to prevent bleeding). Emicizumab (Hemlibra) is a subcutaneous option for haemophilia A that mimics the function of factor VIII. Inhibitors (antibodies that neutralise factor replacement) are the most serious complication and require specialist management.

Iron-deficiency anaemia vs B12/folate vs anaemia of chronic disease: These are different conditions requiring different treatments. Iron-deficiency anaemia (low ferritin, low serum iron) is treated with iron — oral first, then IV infusion (e.g. Ferinject) if tolerated poorly or if rapid correction is needed. B12 deficiency (often pernicious anaemia or dietary) is treated with B12 injections (hydroxocobalamin) every 2–3 months; oral supplements do not work if absorption is the problem. Folate deficiency is treated with oral folic acid 5mg daily. Anaemia of chronic disease results from long-term inflammation (e.g. RA, CKD, cancer) suppressing red cell production — treating the underlying disease is the primary goal.

ITP (Immune Thrombocytopenia): The immune system attacks and destroys platelets, leading to a low platelet count and increased bleeding risk. Many patients with mild or moderate ITP need no treatment — treatment is based on the platelet count, bleeding symptoms, and lifestyle. Options include prednisolone, IVIG, anti-D immunoglobulin, rituximab, and thrombopoietin receptor agonists (eltrombopag / romiplostim) that stimulate the bone marrow to make more platelets. Splenectomy is less commonly used than previously. A platelet count below 10 (×10⁹/L) with any bleeding is a medical emergency.

Anticoagulation — INR and DOACs: Warfarin requires regular INR blood tests to ensure it is working within the target range — too low means blood is not thin enough (clot risk), too high means bleeding risk. Many patients now use DOACs (direct oral anticoagulants) such as apixaban, rivaroxaban, edoxaban, or dabigatran — these do not require routine INR monitoring but have fewer dietary interactions than warfarin. Some patients with mechanical heart valves or antiphospholipid syndrome must remain on warfarin as DOACs are not licensed for these indications. Always tell any treating clinician you are anticoagulated before any procedure.

  • Hb (Haemoglobin) — measures the oxygen-carrying protein in red blood cells. Normal roughly 120–170 g/L depending on sex; below 80 often requires transfusion consideration.
  • Ferritin — the main iron storage protein; low ferritin confirms iron deficiency. High ferritin can indicate inflammation, liver disease, or iron overload (haemochromatosis).
  • Reticulocytes — immature red blood cells; a high count means the bone marrow is working hard (e.g. haemolysis or post-bleed); a low count despite anaemia suggests the marrow is not responding (aplasia, B12 deficiency).
  • LDH (Lactate dehydrogenase) — raised in haemolysis, lymphoma, and myeloma. A useful marker of disease activity and cell breakdown.
  • APTT / PT — clotting tests. APTT is prolonged in haemophilia A & B (and with heparin). PT/INR is prolonged with warfarin or vitamin K deficiency or liver disease.
  • D-dimer — a breakdown product of blood clots. High D-dimer can indicate DVT or PE, but also infection, pregnancy, inflammation — it must be interpreted in clinical context.
  • Hydroxyurea (hydroxycarbamide) — used in sickle cell disease and PV to reduce sickling, red cell production, and thrombotic events. Requires regular FBC monitoring as it suppresses the bone marrow.
  • Exchange transfusion — in sickle cell, replacing sickle red cells with normal donor red cells via an apheresis machine to rapidly reduce the proportion of HbSS cells. Used in acute chest syndrome, stroke, and before major surgery.
📋 Practical reminders for haematology patients:
  • Always carry your blood group card — especially if you have alloantibodies; cross-matching takes longer and the transfusion lab must be warned
  • Sickle cell patients — stay well hydrated, avoid cold, avoid high altitudes or unpressurised aircraft, and ensure you are up to date with pneumococcal, meningococcal, and Hib vaccinations; carry a sickle cell card
  • Anticoagulated patients — tell every dentist, surgeon, or anaesthetist before any procedure; many will need to pause your anticoagulant or bridge with LMWH
  • Haemophilia patients — carry your haemophilia card with your factor level, inhibitor status, and emergency treatment protocol; any joint bleed should be treated promptly with factor to prevent long-term joint damage
  • Iron overload — patients on regular transfusions (e.g. thalassaemia, MDS) accumulate iron in the liver and heart over time; iron chelation therapy (deferoxamine, deferasirox, deferiprone) is used to remove excess iron; ferritin and liver MRI monitor iron burden

Useful links:
🔗 Sickle Cell Society — sicklecellsociety.org
🔗 The Haemophilia Society — haemophilia.org.uk
🔗 Blood Cancer UK — bloodcancer.org.uk
🔗 ITP Support Association — itpsupport.org.uk
🔗 UK Thalassaemia Society — ukts.org
🔗 NHS — Sickle Cell Disease
🔗 NHS — Haemophilia
🔗 NHS — Iron Deficiency Anaemia

🧩 Mental Health Expansion

Which conditions apply to you?

✓ Saved
💡 For detailed eating disorder tracking (physical health monitoring, electrolytes, ECG, ARFID support), enable the dedicated Eating Disorders section in

Eating Disorder — My Details

✓ Saved

Addiction & Substance Use — My Details

✓ Saved

PTSD & Trauma — My Details

✓ Saved

ADHD — My Details

✓ Saved

Autism / ASD — My Details

✓ Saved

Current Mental Health Medications

Drug Dose Frequency Indication Start Date Notes

Monitoring Requirements

Mental Health Review Log

Date Clinician Service / Team Review Type Outcome / Key Decisions Next Review
✓ Saved

My Support Network

Daily Functioning

Hospital & Clinical Encounter Notes

✓ Saved

ℹ️ Mental Health Expansion — Information Hub

What this section covers
S40 is for the full picture of your mental health beyond crisis planning (which is in S20 — Mental Health & Crisis). It covers the conditions that shape your daily life and that clinical staff need to understand when treating you for anything — not just mental health appointments. Filling in the "what clinicians should know" fields in each panel means any doctor, nurse, or paramedic reading your QR code can immediately understand your needs and adapt their approach.

🚨 When to Seek Urgent Help
  • Eating disorders: Heart palpitations or fainting, refeeding concerns, severe malnutrition, refusal to eat combined with severe distress — go to A&E or call 999 if collapsed
  • Addiction — alcohol withdrawal: Seizure risk after 48 hours of stopping if dependent — call 999 or go to A&E urgently
  • Addiction — opioid overdose: Slow or stopped breathing, blue lips, unresponsive — call 999 immediately. Use naloxone if available
  • Addiction — benzodiazepine withdrawal: Severe withdrawal can be life-threatening — do not stop suddenly without medical supervision
  • Mental health crisis: Suicidal ideation with intent or plan — call 999 or go to A&E. Acute psychosis — contact your crisis team or call 999

Eating Disorders Explained
Eating disorders are serious mental and physical health conditions — not lifestyle choices or phases. Anorexia nervosa (AN) involves restricting food intake to a dangerous degree, driven by intense fear of weight gain and distorted body image. Bulimia nervosa (BN) involves cycles of bingeing and purging. Binge eating disorder (BED) involves recurrent episodes of eating large amounts without purging. ARFID (Avoidant/Restrictive Food Intake Disorder) involves avoidance of food based on sensory properties or fear of choking or vomiting — not about weight. All can cause serious physical complications including cardiac arrhythmias, electrolyte imbalances, bone density loss, and malnutrition. Specialist eating disorder teams should be contacted before any clinical decisions about feeding, weight, or nutrition.

Addiction & Recovery
Addiction is a health condition — not a moral failing or lack of willpower. It involves changes to brain chemistry and reward pathways. Harm reduction (reducing risks rather than requiring abstinence) is a valid and evidence-based approach. Naloxone reverses opioid overdose — it is safe and anyone can administer it. Recovery is non-linear; relapse is a common part of the process and does not mean treatment has failed. For clinical staff: alcohol and benzodiazepine withdrawal can be medically dangerous. Never abruptly stop a patient's prescribed substitute medication (e.g. methadone). Always check for drug interactions with pain management.

PTSD & Trauma
PTSD is a response to traumatic experience. The brain becomes stuck in survival mode — triggering intense fear responses to reminders of the trauma (flashbacks, nightmares, hypervigilance). Complex PTSD (C-PTSD) develops after prolonged or repeated trauma and also involves difficulties with emotional regulation, identity, and relationships. EMDR (Eye Movement Desensitisation and Reprocessing) is a first-line NHS-recommended therapy — it uses bilateral stimulation while processing traumatic memories, reducing their emotional charge. For clinical staff: certain sights, sounds, procedures, and environments can trigger trauma responses. Read the triggers fields before any procedure. A calm, predictable, unhurried approach makes an enormous difference.

ADHD — Attention Deficit Hyperactivity Disorder
ADHD is a neurodevelopmental condition affecting executive function — the brain's ability to plan, organise, focus, regulate emotions, and manage time. It is not about being naughty or lazy. Stimulant medications (methylphenidate, lisdexamfetamine) are controlled drugs — prescribers need to be aware of this during admissions. Masking (hiding difficulties to appear neurotypical) is exhausting and common, especially in women — many women receive their diagnosis in adulthood. Written instructions, extra time, and clear explanations help. ADHD frequently co-occurs with anxiety, depression, ASD, and sleep disorders.

Autism / ASD — Autism Spectrum Disorder
Autism is a neurodevelopmental difference — not a disease or disorder to be cured. Autistic people process sensory information, social interaction, and communication differently. Many autistic people have significant strengths alongside their challenges. The term "Asperger syndrome" is no longer used diagnostically but some people still identify with it. For clinical staff: sensory environments (bright lights, loud noise, physical touch, strong smells) can cause significant distress. Clear, direct, jargon-free communication is essential. Give one instruction at a time. Allow extra time. The communication and sensory fields in this section should be read before any consultation or procedure. A meltdown is not a behaviour problem — it is a neurological overload response.

Useful Links
🔗 Beat Eating Disorders — beateatingdisorders.org.uk
🔗 Turning Point — turning-point.co.uk
🔗 Mind — mind.org.uk
🔗 PTSD UK — ptsduk.org
🔗 ADHD UK — adhduk.co.uk
🔗 National Autistic Society — autism.org.uk
🔗 Samaritans: 116 123 (free, 24/7)

🧠 Depression, Anxiety & Mood

Which conditions apply to you?

✓ Saved

Depression / MDD — My Details

✓ Saved

Anxiety — My Details

✓ Saved

Bipolar Disorder — My Details

✓ Saved

OCD — My Details

✓ Saved

BPD / EUPD — My Details

✓ Saved

Schizophrenia / Psychosis — My Details

✓ Saved

My Mental Health Care Team

✓ Saved

Current Mental Health Medications

Drug Dose Frequency Indication Start Date Notes
✓ Saved

Mental Health Review Log

Date Clinician Service / Team Review Type Outcome / Key Decisions Next Review
✓ Saved

Relapse Prevention Plan

✓ Saved

Psychiatric Admissions

✓ Saved

ℹ️ Depression, Anxiety & Mood — Information Hub

About this section
This section helps you build a full picture of your mental health — beyond the crisis plan in S20. Recording your medications, care team, and relapse plan in one place means any clinician can read your QR code and instantly understand your needs.

🚨 When to Seek Urgent Help
  • Hearing voices commanding harm
  • Active suicidal plan
  • Manic episode with severe risk behaviour
  • First episode psychosis
  • Severe self-harm
  • Unable to keep yourself safe

Call 999, go to A&E, or contact your crisis team immediately.

Depression
Depression is more than feeling sad — it can affect sleep, appetite, concentration, energy, and the will to live. PHQ-9 is a standard 9-question score used by GPs and clinicians: 0–4 minimal, 5–9 mild, 10–14 moderate, 15–19 moderately severe, 20–27 severe. NHS-recommended treatments include talking therapy (CBT, IPT), antidepressants (SSRIs first line), and for severe treatment-resistant depression, ECT.

Anxiety & Panic
Generalised Anxiety Disorder (GAD) is persistent, excessive worry across many areas of life. Panic Disorder involves sudden intense episodes of fear with physical symptoms (racing heart, breathlessness, dizziness). GAD-7 is the standard score: 5–9 mild, 10–14 moderate, 15+ severe. Breathing techniques (4-7-8, box breathing) and grounding (5-4-3-2-1 senses) can help in the moment. CBT is the first-line therapy; SSRIs/SNRIs are the first-line medication.

Bipolar Disorder
Bipolar involves episodes of low mood (depression) and high mood (mania or hypomania). Bipolar I includes full manic episodes; Bipolar II involves hypomania (less severe). Keeping a mood diary is essential — patterns and triggers become visible. Lithium remains the gold-standard mood stabiliser but requires regular blood monitoring (lithium levels, kidney function, thyroid function).

OCD
OCD is not about being tidy — it is a disorder where intrusive, distressing thoughts (obsessions) drive repetitive behaviours or mental acts (compulsions) aimed at reducing anxiety. ERP (Exposure and Response Prevention) is the first-line NHS therapy — gradually facing feared situations without performing compulsions. SSRIs (often at higher doses than for depression) are first-line medication.

BPD / EUPD
Borderline Personality Disorder (also called Emotionally Unstable Personality Disorder) involves intense, rapidly shifting emotions, difficulty with relationships, fear of abandonment, and often self-harm or suicidal feelings. It is highly stigmatised — but DBT (Dialectical Behaviour Therapy) is an effective evidence-based treatment. Recovery is absolutely possible. For clinical staff: a calm, validating, consistent approach makes an enormous difference.

Schizophrenia / Psychosis
Psychosis involves a break from shared reality — hallucinations (hearing/seeing things others don't), delusions (firmly held false beliefs), or disorganised thinking. Early intervention dramatically improves outcomes. Positive symptoms are things added (voices, beliefs); negative symptoms are things lost (motivation, emotion, energy). Antipsychotic medications and depot/LAI injections are standard treatment.

Useful Links
🔗 Mind — mind.org.uk
🔗 Rethink Mental Illness — rethink.org
🔗 PAPYRUS (suicide prevention) — papyrus-uk.org
🔗 Bipolar UK — bipolaruk.org
🔗 OCD-UK — ocduk.org
🔗 Samaritans: 116 123 (free, 24/7)

🧩 Dementia & Memory

Which condition(s) apply?

✓ Saved

Alzheimer's Disease — My Details

✓ Saved

Vascular Dementia — My Details

✓ Saved

Lewy Body Dementia (DLB) — My Details

⚠️ Antipsychotic Sensitivity Warning
People with Lewy Body Dementia can have severe, potentially life-threatening reactions to antipsychotic medications including haloperidol, risperidone, and olanzapine. This MUST be documented in any hospital admission.
✓ Saved

Frontotemporal Dementia (FTD) — My Details

✓ Saved

Mild Cognitive Impairment (MCI) — My Details

✓ Saved

Legal & Capacity

✓ Saved

Driving & Independence

✓ Saved

Daily Living Support

✓ Saved

Cognitive Assessment Log

Date Assessment Tool Score Clinician Setting Notes
✓ Saved

Current Medications

Drug Dose Frequency Indication Start Date Notes
✓ Saved

My Memory Clinic / Specialist Team

✓ Saved

ℹ️ Dementia & Memory — Information Hub

What is dementia?
Dementia is an umbrella term — not a single disease. It describes a group of conditions that cause progressive decline in memory, thinking, and the ability to manage daily life. There are over 850,000 people living with dementia in the UK, and many different underlying causes.

Alzheimer's Disease
The most common type of dementia (around 60% of cases). Caused by abnormal protein deposits (amyloid plaques and tau tangles) in the brain. It is progressive and currently has no cure — but cholinesterase inhibitors (donepezil, rivastigmine, galantamine) and memantine can slow symptom progression in some people.

Vascular Dementia
Caused by reduced blood flow to the brain — often after strokes or due to small vessel disease. Managing blood pressure, cholesterol, diabetes, and stopping smoking are vital to slow progression. Often co-exists with Alzheimer's (mixed dementia).

Lewy Body Dementia (DLB)
Caused by abnormal protein deposits (Lewy bodies) in the brain. Visual hallucinations are a core feature (not a sign of psychiatric illness), along with fluctuating cognition and Parkinsonism. ANTIPSYCHOTIC DANGER: People with DLB can have severe, life-threatening reactions to common antipsychotic medications. Always make sure this is documented prominently in medical records.

Frontotemporal Dementia (FTD)
Affects the frontal and temporal lobes — causing changes in personality, behaviour, or language before memory is affected. Often starts at a younger age (40s–60s) and is frequently misdiagnosed as depression, psychiatric illness, or a mid-life crisis. Some forms have a strong genetic link.

Mild Cognitive Impairment (MCI)
A noticeable change in memory or thinking that is greater than normal ageing but does not yet meet criteria for dementia. Not everyone with MCI goes on to develop dementia. Lifestyle factors — exercise, Mediterranean diet, good sleep, hearing aids if needed, social engagement, treating depression — all matter.

Driving and Dementia
By law in the UK, a diagnosis of dementia must be reported to the DVLA. The DVLA will decide whether driving can continue (often with annual review). Not telling them can invalidate your insurance and lead to prosecution.

Lasting Power of Attorney (LPA)
An LPA lets a trusted person make decisions on your behalf if you lose capacity. There are two types — Health & Welfare and Property & Financial. It can only be set up while the person still has mental capacity to consent — so apply as early as possible after diagnosis.

🚨 Sudden severe confusion or rapid change in behaviour → seek urgent medical review. This is often delirium (caused by infection, dehydration, medication, or pain) — not a worsening of dementia. Delirium is treatable.

Useful Links
🔗 Alzheimer's Society — alzheimers.org.uk
🔗 Dementia UK — dementiauk.org
🔗 Admiral Nurses — dementiauk.org/admiral-nurses
🔗 Carers UK — carersuk.org

🦋 Thyroid & Endocrine

Which condition(s) apply to you?

✓ Saved

Hypothyroidism / Hashimoto's — My Details

✓ Saved

Hyperthyroidism / Graves' Disease — My Details

✓ Saved

Addison's Disease — My Details

✓ Saved

Cushing's Syndrome — My Details

✓ Saved

Pituitary Conditions — My Details

✓ Saved

Diabetes Insipidus — My Details

✓ Saved

Blood Results Log

Date Test Result Units Normal Range Notes
✓ Saved

Scan & Imaging Log

Date Scan Type Finding Summary Action Taken Notes
✓ Saved

My Endocrine Team

✓ Saved

Current Endocrine Medications

Drug Dose Frequency Indication Start Date Notes
✓ Saved

ℹ️ Thyroid & Endocrine — Information Hub

About this section
This section covers thyroid conditions, adrenal conditions, and pituitary disorders. Keeping your bloods, scans, and medications in one place means any clinician — A&E, GP, surgeon, anaesthetist — has the full picture immediately.

🚨 When to Seek Urgent Help
  • Adrenal crisis (Addison's): vomiting / collapse / unable to take steroids → CALL 999 immediately. Use emergency hydrocortisone injection if available.
  • Severe hypoglycaemia
  • Thyroid storm: high fever + racing heart + confusion → CALL 999
  • Pituitary apoplexy: sudden severe headache + visual change in known pituitary tumour → A&E urgently

Hypothyroidism
An underactive thyroid produces too little thyroid hormone — leading to tiredness, weight gain, feeling cold, dry skin, hair thinning, and slow thinking. Treatment is straightforward — daily levothyroxine. Take on an empty stomach, 30–60 minutes before food, with water only. Do not take with calcium or iron supplements within 4 hours. TSH target is usually 0.4–4.0 mU/L but is individualised. Hashimoto's is the autoimmune form, confirmed by positive TPO antibodies.

Hyperthyroidism / Graves'
An overactive thyroid produces too much hormone — causing weight loss, racing heart, sweating, tremor, anxiety, and heat intolerance. Graves' disease is the autoimmune form (TRAb-positive). It can cause Graves' eye disease (exophthalmos / thyroid eye disease) — seek ophthalmology review urgently if eyes become painful or vision changes. Treatments: carbimazole (or PTU), radioactive iodine (RAI), or thyroidectomy.

Addison's Disease
Adrenal glands fail to produce cortisol and aldosterone. Adrenal crisis is life-threatening. Sick day rules: when ill, injured, or having any procedure — double your usual hydrocortisone dose. If vomiting or unable to keep tablets down, use your emergency hydrocortisone injection and call 999. Always carry your steroid emergency card and wear a Medic Alert. Make sure family/carers know how to give an emergency injection.

Cushing's Syndrome
Too much cortisol — either from a pituitary or adrenal tumour, ectopic ACTH source, or long-term steroid use. Symptoms: rapid weight gain (face, neck, abdomen), purple stretch marks, easy bruising, proximal muscle weakness, high blood pressure, mood changes. Diagnosis involves 24h urinary cortisol, late-night salivary cortisol, and dexamethasone suppression test. Treatment depends on cause — often surgery, sometimes medical (metyrapone, ketoconazole, osilodrostat).

Pituitary Conditions
The pituitary gland controls many other hormone systems. Acromegaly (excess growth hormone in adults) causes enlarged hands/feet/jaw, sweating, joint pain. Prolactinoma causes galactorrhoea, menstrual disruption, infertility, low libido — treated with cabergoline. Hypopituitarism requires replacement of one or more pituitary hormones (cortisol, thyroid, sex hormones, growth hormone, ADH).

Diabetes Insipidus
Despite the name, this is not related to diabetes mellitus — it's a problem with the antidiuretic hormone (ADH). The kidneys cannot retain water properly, causing huge urine volumes (5+ litres/day) and intense thirst. Central DI responds to desmopressin (DDAVP). Nephrogenic DI is treated by addressing the cause and dietary changes. Dehydration risk is high — always make sure clinicians know about your DI before fluid restriction or surgery.

Useful Links
🔗 British Thyroid Foundation — btf-thyroid.org.uk
🔗 Addison's Disease Self-Help Group — addisons.org.uk
🔗 Pituitary Foundation — pituitary.org.uk

🤕 Migraine & Headache

Which condition(s) apply?

✓ Saved

Migraine — My Details

✓ Saved

Cluster Headache — My Details

✓ Saved

Chronic Tension Headache — My Details

✓ Saved

Medication Overuse Headache (MOH) — My Details

⚠️ About Medication Overuse Headache
Medication Overuse Headache occurs when pain relief is taken on 10 or more days per month. It is one of the most common causes of chronic daily headache. The only treatment is to withdraw from the overused medication — this should be done with GP or specialist support.
✓ Saved

Headache / Migraine Attack Log

Date Type Severity (1–10) Duration Aura Main Triggers Treatment Used Treatment Effective Notes
✓ Saved

Acute / Rescue Medications

✓ Saved

Preventative Medications Log

Drug Dose Frequency Start Date Effective? Notes
✓ Saved

My Headache Specialist / Neurology Team

✓ Saved

ℹ️ Migraine & Headache — Information Hub

Migraine — more than a headache
Migraine is a neurological disease — not just a bad headache. Attacks typically have three or four phases: prodrome (warning signs hours before — mood changes, food cravings, neck stiffness), aura (in around a third of people), headache (often one-sided, throbbing, with nausea and sensitivity to light/sound), and postdrome (the migraine 'hangover'). Attacks can be disabling.

Aura and stroke / TIA
Migraine aura usually develops gradually over 5–20 minutes and lasts under an hour. If you have sudden new neurological symptoms without a prior history of aura, this could be a stroke or TIA and needs urgent assessment. If symptoms come on suddenly or include severe weakness or speech problems, call 999.

Cluster headache
Often described as the most painful condition known to medicine — sometimes called 'suicide headache'. Attacks are short (15–180 minutes) but extremely severe, on one side of the head around the eye, with eye-watering, nasal congestion, and restlessness. High-flow oxygen and triptan injection or nasal spray are the first-line treatments — tablets are usually too slow.

Medication Overuse Headache (MOH) — the painkiller trap
Taking any painkiller or triptan on 10 or more days per month can cause headaches to become chronic. The medications that gave relief start to drive the next headache. The only treatment is to come off the overused medication, usually with GP or specialist support. Headaches often get worse before they get better — but the long-term outcome is good.

Preventative vs acute treatment
Acute medication (triptans, NSAIDs, paracetamol) is taken to stop an individual attack. Preventative medication (propranolol, topiramate, amitriptyline, candesartan, CGRP injections, Botox) is taken every day to reduce how often attacks happen. Preventatives need 8–12 weeks before you know if they're working — don't stop too early.

Keeping a headache diary
Record: date, time it started, duration, severity (1–10), aura, triggers (sleep, food, stress, period, weather), what medication you took, and whether it worked. A 3-month diary makes neurology appointments dramatically more useful and helps identify patterns.

🚨 CALL 999 — Headache Red Flags
  • Sudden 'worst ever' headache (thunderclap headache)
  • Headache after head injury
  • Headache with fever and stiff neck (possible meningitis)
  • New neurological symptoms — weakness, speech problems, persistent vision loss
  • Headache with seizures or new confusion

Useful Links
🔗 The Migraine Trust — migrainetrust.org
🔗 OUCH UK (Organisation for the Understanding of Cluster Headache) — ouchuk.org
🔗 NHS Migraine Guide — nhs.uk

😴 CFS/ME, Long COVID & Fatigue

Which condition(s) apply?

✓ Saved

CFS/ME — My Details

✓ Saved

Long COVID / Post-COVID Syndrome — My Details

✓ Saved

FND — Functional Neurological Disorder

✓ Saved

Other Post-Viral Fatigue — My Details

✓ Saved

Energy Management

✓ Saved

Daily Symptom & Energy Log

Date Energy 0–10 PEM triggered Hours active Main symptoms today Notes
✓ Saved

Crash / Flare Log

Start date End date Trigger Severity Duration (days) Recovery approach Notes
✓ Saved

Medications

Drug name Indication Dose Frequency Prescribed by Notes
✓ Saved

Non-Pharmacological Management

✓ Saved

My Care Team

✓ Saved

ℹ️ CFS/ME & Long COVID — Information Hub

What is CFS/ME?
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. The 2021 NICE guidelines define it as a complex, multi-system illness characterised by post-exertional malaise (PEM), unrefreshing sleep, cognitive difficulties, and orthostatic intolerance — all lasting at least 6 weeks in adults. Severity ranges from mild (able to do light tasks with significant adaptations) to very severe (bedbound and dependent on care).

Post-Exertional Malaise (PEM) — the key feature
PEM is a worsening of all symptoms after physical, cognitive, or emotional effort — often delayed by 12–48 hours. It is not ordinary tiredness. Even minimal exertion can trigger a crash lasting days, weeks, or longer. Pacing — staying within your energy limits — is the core management strategy. Graded Exercise Therapy (GET) is no longer recommended by NICE 2021 for ME/CFS.

Severity levels (NICE 2021)
Mild: reduced activity, still mobile, may work with significant adaptations. Moderate: significantly reduced mobility, may be housebound for some periods. Severe: mainly housebound, severe cognitive impairment. Very severe: bedbound, needs care for all daily activities.

What is Long COVID?
Long COVID (also called Post-COVID Syndrome) is defined by NICE as symptoms lasting more than 12 weeks after COVID-19 infection that are not explained by an alternative diagnosis. Common symptoms include fatigue, breathlessness, brain fog, chest tightness, palpitations, joint pain, and sleep disturbance. A long COVID clinic can provide multidisciplinary assessment.

What is FND?
Functional Neurological Disorder (FND) describes neurological symptoms (motor, sensory, seizures) that are not caused by a structural neurological disease but by a change in how the brain functions. It is real, not "made up", and can be just as disabling. Physiotherapy and specialist psychological support are the main treatments.

When to seek urgent help
Contact your GP urgently if you develop: chest pain; breathlessness that is new or worsening rapidly; sudden unexplained weight loss; severe or persistent headache; new swollen glands; any symptom that is very different from your usual pattern. PEM alone does not require emergency care — rest, pace, and follow your care plan.

🚨 CALL 999
  • Severe chest pain or difficulty breathing at rest
  • Sudden new neurological change — weakness on one side, speech difficulty, facial drooping
  • Loss of consciousness

Useful Links
🔗 ME Association — meassociation.org.uk
🔗 Action for ME — actionforme.org.uk
🔗 Long COVID SOS — longcovidsos.org
🔗 FND Hope International — fndhope.org
🔗 NHS CFS/ME Guide — nhs.uk

🔴 HIV & Immunology

Which condition(s) apply?

✓ Saved

HIV Status

✓ Saved

Living Well with HIV

✓ Saved

PrEP — Pre-Exposure Prophylaxis

✓ Saved

PEP — Post-Exposure Prophylaxis

✓ Saved

Primary Immunodeficiency

✓ Saved

Viral Load & CD4 Summary

✓ Saved

Results Log

Date Test Result Units / interpretation Ordered by Notes
✓ Saved

Opportunistic Infection Screening

✓ Saved

Antiretroviral Therapy (ART) Log

Drug name Drug class Start date Stop date Reason stopped Notes
✓ Saved

Other Medications & Prophylaxis

Drug name Purpose Dose Frequency Started Notes
✓ Saved

HIV Specialist Care Team

✓ Saved

ℹ️ HIV & Immunology — Information Hub

HIV today — a very different picture
Thanks to modern antiretroviral therapy (ART), most people living with HIV in the UK who are diagnosed and on treatment have a near-normal life expectancy. HIV is now a manageable long-term condition, not a life-limiting illness for most people. Getting and staying on effective ART is the most important thing you can do.

U=U — Undetectable = Untransmittable
If your viral load is undetectable (usually <50 copies/ml) and stays that way, you cannot pass HIV on through sex. This is one of the most important facts in modern HIV care. It is supported by robust clinical evidence and endorsed by Public Health England, NHS England, and BHIVA.

ART drug classes — plain English
NRTIs (nucleoside reverse transcriptase inhibitors) — block the enzyme HIV uses to copy itself. Examples: emtricitabine, tenofovir, abacavir, lamivudine. NNRTIs — also block reverse transcriptase but at a different point. Examples: efavirenz, rilpivirine, doravirine. PIs (protease inhibitors) — block assembly of new HIV particles. Examples: darunavir. INSTIs (integrase inhibitors) — prevent HIV DNA from inserting itself into your cells. Examples: dolutegravir, bictegravir, raltegravir. Most modern regimens use an INSTI-based combination in one or two tablets daily.

PrEP and PEP
PrEP is taken by HIV-negative people before potential exposure to prevent HIV. It is highly effective when taken as prescribed (daily or event-based). In England, PrEP is available free through sexual health clinics. PEP is an emergency treatment started within 72 hours (ideally within 24 hours) after potential exposure — e.g. condom failure or needlestick. PEP must be started as soon as possible. Go to A&E or a sexual health clinic immediately.

CD4 count and viral load — what the numbers mean
CD4 count measures immune system strength. Normal range: 500–1,500 cells/mm³. Below 200 is associated with higher risk of opportunistic infections. Viral load measures how much HIV is in your blood. On effective ART, this should reach undetectable (<50 copies/ml). A detectable viral load may indicate a missed dose, resistance, or medication issues — speak to your HIV team.

Opportunistic infections
When the immune system is weakened (particularly when CD4 is below 200), infections that healthy immune systems control easily can become serious. The most common include PCP pneumonia, CMV, toxoplasmosis, and cryptococcal meningitis. Preventive (prophylactic) medications dramatically reduce risk. Most opportunistic infections are uncommon in people on effective ART with good CD4 counts.

Privacy and disclosure — your rights
Your HIV status is confidential medical information. Healthcare staff are bound by strict confidentiality rules and cannot disclose it without your consent (except in very limited circumstances related to serious risk to an identifiable person). You do not have to tell your employer. You are protected by the Equality Act 2010.

🚨 Seek urgent help if:
  • Fever above 38°C with CD4 count below 200 — could be PCP or other opportunistic infection
  • Severe headache with neck stiffness and fever (possible cryptococcal meningitis)
  • Sudden unexplained weight loss of more than 10% in one month
  • Any new neurological symptom (weakness, confusion, visual change)
  • Breathlessness at rest or rapidly worsening breathlessness

CALL 999 for: high fever with severe confusion or breathlessness; any sudden neurological change; suspected meningitis.

Useful Links
🔗 Terrence Higgins Trust — tht.org.uk
🔗 NAM / aidsmap — aidsmap.com
🔗 HIV i-Base — i-base.info
🔗 BHIVA Patient Information — bhiva.org
🔗 NHS HIV Guide — nhs.uk

✈️ Travel Health

Which travel health conditions apply?

✓ Saved

Travel Health Overview

✓ Saved

Travel Vaccination Log

Date given Vaccine Brand / batch Dose # Site Administered by Next due Notes
✓ Saved

Malaria

✓ Saved

Yellow Fever

✓ Saved

Zika

✓ Saved

Lyme Disease

✓ Saved

TB (Travel Exposure)

✓ Saved

Altitude Sickness

✓ Saved

Trip Record

Destination / country Departure Return Risk level Antimalarial used Notes
✓ Saved

Altitude & Jet Lag

✓ Saved

Travel Medications Record

Drug Purpose Dose Frequency Start date Stop date Notes
✓ Saved

Pre-Travel Screening

✓ Saved

Emergency Contact Abroad

✓ Saved

ℹ️ Travel Health — Information Hub

Why travel health matters for complex patients
Travelling with a chronic or complex condition requires more preparation than a standard travel health check. Immunosuppressed patients, those on long-term medications, or patients dependent on clinical equipment (such as infusion pumps or feeding tubes) need personalised advice from their GP or travel clinic. Always book a pre-travel appointment at least 6–8 weeks before departure.

Malaria — know your risk
Malaria is a life-threatening infection spread by the Anopheles mosquito, mainly in sub-Saharan Africa, South Asia, and parts of South America. The most dangerous form is Plasmodium falciparum (most common in Africa). Symptoms appear 7–18 days after a bite and include: high fever, rigors (uncontrollable shaking), headache, muscle pain, and vomiting. If you develop fever within 3 months of returning from a malaria area, go to A&E immediately and tell them where you travelled. Antimalarials do not give 100% protection — always combine with bite prevention (DEET repellent, long sleeves, mosquito nets). Patients who are asplenic (no spleen) are at very high risk and must take prophylaxis.

Yellow Fever — vaccination and certificate
Yellow fever is a viral haemorrhagic fever spread by mosquitoes in parts of tropical Africa and South America. Many countries require proof of vaccination (an International Certificate of Vaccination, or yellow card) to enter. The vaccine is a live attenuated virus and is contraindicated in: the immunocompromised, those with thymus disorders, infants under 9 months, and those with severe egg allergy. If you cannot receive the vaccine, your travel clinic can issue a medical exemption certificate — though some countries may still refuse entry. The vaccine is now considered to give lifelong protection (one dose).

Altitude Sickness — AMS, HACE, and HAPE explained
Acute Mountain Sickness (AMS) is the mildest form: headache, nausea, dizziness, fatigue, poor sleep. It occurs at altitudes above about 2,500 metres and usually resolves with acclimatisation (resting and not climbing higher). HACE (High Altitude Cerebral Oedema) is severe AMS where the brain swells — symptoms include confusion, loss of coordination (ataxia), drowsiness, and loss of consciousness. HAPE (High Altitude Pulmonary Oedema) causes the lungs to fill with fluid — breathlessness at rest, pink frothy sputum, rapid deterioration. Both HACE and HAPE are life-threatening emergencies requiring immediate descent. Acetazolamide (Diamox) can prevent and treat AMS — it requires a prescription and is not suitable for people with sulfa allergy.

🚨 Altitude emergency — descend immediately if:
  • Confusion, disorientation, or inability to walk a straight line (HACE)
  • Breathlessness at rest or coughing up pink or frothy sputum (HAPE)
  • Severe, worsening headache not relieved by paracetamol
  • Loss of consciousness

Do not wait for morning. Descend at night if necessary. Descent is the treatment.

Traveller's Diarrhoea
The most common travel illness. Usually caused by bacteria (E. coli, Campylobacter, Salmonella) or viruses. Key management: stay well hydrated using oral rehydration salts (ORS). Loperamide reduces frequency but does not treat the cause. Seek medical help if: blood or mucus in stool, high fever (>38.5°C), symptoms lasting more than 72 hours, or inability to keep fluids down. Standby antibiotics (ciprofloxacin or azithromycin) may be prescribed by your GP for high-risk travellers or those going to remote areas. Azithromycin is preferred for travel to South and South-East Asia due to quinolone-resistant Campylobacter.

Lyme Disease — tick awareness
Lyme disease is caused by Borrelia burgdorferi, spread by the bite of infected ticks. It is found in forested areas of Europe, North America, and parts of Asia. The classic sign is the erythema migrans rash — a spreading red rash (often with a pale centre) appearing 3–30 days after a bite. Not everyone gets the rash. Removing a tick within 24 hours significantly reduces the risk of transmission. Use fine-tipped tweezers, grip the tick close to the skin, and pull upward steadily — do not twist or squeeze the body. After removal, seek GP advice, especially if you feel unwell or notice a rash. Lyme disease is usually treated successfully with doxycycline or amoxicillin if caught early.

Seeking urgent help abroad
For any serious illness abroad: contact your travel insurance helpline first — they can locate approved hospitals and arrange medical repatriation if needed. The UK Government website (gov.uk/foreign-travel-advice) has country-specific emergency numbers. The British Embassy or Consulate can provide a list of local English-speaking doctors. A GHIC (Global Health Insurance Card) entitles you to state healthcare in EEA countries and Switzerland at the same rate as a local — it does not cover repatriation or private care.

Useful Links
🔗 NHS FitForTravel — fitfortravel.nhs.uk
🔗 NaTHNaC Travel Health Pro — travelhealthpro.org.uk
🔗 MASTA Travel Health — masta-travel-health.com
🔗 UK Government Travel Advice — gov.uk
🔗 NHS Malaria — nhs.uk

💙 Vascular & Lymphatic

Which conditions apply to you?

✓ Saved

Primary Diagnosis

✓ Saved

Vascular Team

✓ Saved

Lymphoedema

✓ Saved

Varicose Veins

✓ Saved

Peripheral Artery Disease (PAD)

✓ Saved

Postural / Orthostatic Hypotension

✓ Saved

DVT & Post-Thrombotic Syndrome

✓ Saved

Chronic Venous Insufficiency (CVI)

✓ Saved

Symptom Overview

✓ Saved

Lying / Standing BP Log

Record your blood pressure lying down and then standing up. A drop of 20+ mmHg systolic (or 10+ mmHg diastolic) within 3 minutes of standing confirms postural hypotension.

Date Time Lying sys. Lying dia. Standing sys. Standing dia. Drop / note Symptoms Notes
✓ Saved

Limb Measurement Log

Regular circumference measurements track lymphoedema progress. Measurements are taken at the same point(s) each time using a tape measure.

Date Limb Measurement point Circumference (cm) Taken by Notes
✓ Saved

ABPI Reading Log

The Ankle Brachial Pressure Index (ABPI) measures blood flow in the legs. Normal is 0.9–1.3. Below 0.9 indicates peripheral artery disease.

Date Left ABPI Right ABPI Performed by Result interpretation Notes
✓ Saved

Compression Therapy

✓ Saved

Medications Log

Medication Dose Frequency Indication Prescriber Notes
✓ Saved

Procedures & Interventions Log

Date Procedure Hospital / Clinic Surgeon / Clinician Outcome Notes
✓ Saved

Exercise, Lifestyle & Foot Care

✓ Saved

ℹ️ Vascular & Lymphatic — Information Hub

What is the vascular and lymphatic system?
Your vascular system is the network of arteries (carrying oxygen-rich blood from the heart to the body) and veins (carrying blood back). Your lymphatic system runs alongside it — a network of vessels and nodes that drain excess fluid from tissues, filter waste, and support your immune system. Problems in either system cause swelling, pain, poor circulation, or difficulty healing.

Lymphoedema
Lymphoedema is chronic swelling caused by damage to or blockage of the lymphatic system. It can affect any limb, the trunk, face, or genitals. Primary lymphoedema has no known external cause (often genetic). Secondary lymphoedema results from damage — most commonly from cancer surgery (especially breast cancer with axillary node clearance), radiotherapy, or infection. It is a lifelong condition but can be very effectively managed. The two main treatments are: compression garments (worn daily to prevent fluid accumulating) and Manual Lymph Drainage (MLD) — a specialist massage technique that moves fluid along the lymphatic vessels. Decongestive Lymphatic Therapy (DLT) combines both with exercise and skin care. ⚠️ Red flag: if a swollen limb becomes hot, red, and painful — especially with fever — this is likely cellulitis. Call 111 or go to A&E. Patients with lymphoedema are at high risk of serious cellulitis and may need IV antibiotics.

Peripheral Artery Disease (PAD)
PAD occurs when atherosclerosis (fatty plaques) narrows the arteries supplying blood to the legs. The classic symptom is claudication — a cramping pain in the calf (or thigh or buttock) that comes on after walking a set distance and relieves with rest, like a muscle demanding more blood than the narrowed artery can provide. The ABPI (Ankle Brachial Pressure Index) is a simple non-invasive test comparing ankle to arm blood pressure. A normal ABPI is 0.9–1.3; below 0.9 indicates PAD; below 0.5 indicates severe disease. Key risk factors are smoking, diabetes, high blood pressure, and high cholesterol — managing these slows progression significantly. 🚨 999 emergency: sudden severe leg pain with a cold, pale, numb, or pulseless limb = acute limb ischaemia. This is a vascular emergency — call 999 immediately.

DVT and Pulmonary Embolism
A DVT (Deep Vein Thrombosis) is a blood clot in a deep vein, usually the leg. Symptoms include: calf swelling, pain, redness, and warmth in one leg. A dangerous complication is a pulmonary embolism (PE) — a clot breaking off and travelling to the lungs. DVTs are treated with anticoagulant medicines (blood thinners) such as rivaroxaban, apixaban, or warfarin. Post-Thrombotic Syndrome (PTS) is a long-term complication — aching, swelling, and skin changes in the affected leg — managed with compression stockings. 🚨 Seek urgent help: calf pain + swelling in one leg = call 111. Sudden breathlessness, chest pain, coughing blood, or fast heart rate = call 999 immediately — may be a PE.

Postural Hypotension (Orthostatic Hypotension)
Postural hypotension (OH) is a significant drop in blood pressure when you stand up — causing dizziness, light-headedness, blurred vision, or fainting. It is confirmed when the systolic BP drops by 20 mmHg (or diastolic by 10 mmHg) within 3 minutes of standing. Practical tips: rise slowly from sitting or lying, pause on the edge of the bed before standing, avoid hot environments after meals, wear compression stockings, stay well hydrated, and avoid long periods of standing still. Medications such as fludrocortisone or midodrine may be prescribed. Some regular medications (antihypertensives, diuretics, antidepressants) can cause or worsen OH — discuss with your GP before stopping anything.

Varicose Veins & Chronic Venous Insufficiency (CVI)
Varicose veins are enlarged, twisted veins — most common in the legs — caused by damaged valves that allow blood to pool. CVI is a chronic condition where leg veins fail to pump blood efficiently back to the heart, leading to swelling, aching, skin changes (pigmentation, eczema, lipodermatosclerosis), and in severe cases, venous leg ulcers. Compression stockings are the cornerstone of treatment. For varicose veins, procedural options include foam sclerotherapy, endovenous laser treatment (EVLT), radiofrequency ablation (RFA), or surgery. ⚠️ If a varicose vein bleeds: lie down, elevate the leg, and apply firm pressure with a clean cloth. Call 111 if bleeding does not stop within 10 minutes.

Useful Links
🔗 Lymphoedema Support Network — lymphoedema.org
🔗 Legs Matter (leg ulcers & venous conditions) — legsmatter.org
🔗 Circulation Foundation — circulationfoundation.org.uk
🔗 NHS PAD — nhs.uk
🔗 NHS DVT — nhs.uk

🦷 Oral & Dental Health

Which dental or oral conditions apply to you?

✓ Saved

My Dental Health Overview

✓ Saved

Dental Team

✓ Saved

Dental Anxiety & Access

✓ Saved

Tooth Decay / Dental Caries

✓ Saved

Gum Disease (Gingivitis / Periodontitis)

✓ Saved

Oral Cancer

✓ Saved

Dry Mouth (Xerostomia)

✓ Saved

Oral Thrush (Oral Candidiasis)

✓ Saved

TMJ / Jaw Pain (TMJD)

✓ Saved

Recurrent Mouth Ulcers

✓ Saved

Missing / Lost Teeth

✓ Saved

Dental Procedure Log

A record of all dental treatments, procedures, and check-ups. Useful for clinicians when complex patients are admitted — especially for antibiotic prophylaxis decisions.

Date Procedure Tooth / Area Dentist / Clinic Outcome Notes
✓ Saved

Orthodontics & Appliances

✓ Saved

Implants, Crowns & Bridges

✓ Saved

Dental Medications & Mouthwashes

Record dental-specific medications, prescribed mouthwashes, topical treatments, and antifungals. Include any medications that affect your dental health (e.g. bisphosphonates, anticoagulants).

Drug / Product Dose Frequency Reason Prescribed By Notes
✓ Saved

Daily Oral Care Routine

✓ Saved

Specialist Referrals & Dental Risk Medications

✓ Saved

ℹ️ Oral & Dental Health — Information Hub

Why dental health matters for complex patients
Dental health is often overlooked in hospital settings, but it matters enormously. Many long-term medications cause dry mouth, which dramatically increases decay risk. Immunosuppressed patients are highly vulnerable to oral thrush and delayed healing. Patients on bisphosphonates (for osteoporosis or cancer) face a rare but serious risk called osteonecrosis of the jaw if extractions are not carefully planned. Anticoagulants affect bleeding after dental procedures. Telling your dentist about all your medical conditions and medications is essential — it changes how they treat you.

Gum disease (periodontitis)
Gum disease is caused by bacterial plaque building up at the gum line. In its early stage (gingivitis), gums are red, swollen, and bleed when brushing — this is reversible with good brushing and professional cleaning. If untreated, it progresses to periodontitis — the gum detaches from the tooth, bone is destroyed, and teeth become loose. Periodontitis is associated with increased risk of cardiovascular disease and diabetes complications. The main treatment is professional deep cleaning (root planing) and regular maintenance with a hygienist. It can be arrested but not reversed once bone loss has occurred.

Dry mouth (xerostomia)
Over 400 common medications cause dry mouth as a side effect — including antidepressants, antihistamines, diuretics, antihypertensives, and bladder medications. Saliva is vital for protecting teeth: it neutralises acid, washes away food, and fights bacteria. Without enough saliva, decay can develop on all surfaces of every tooth very quickly. Management: use high-fluoride prescription toothpaste (Duraphat 2800ppm or 5000ppm), saliva substitutes (Biotene, Glandosane), sip water frequently, avoid alcohol and caffeine, and tell your dentist which medications you take. Pilocarpine tablets can stimulate saliva production in some cases.

Oral cancer
Oral cancer affects the mouth, tongue, lips, and throat. The most common type is squamous cell carcinoma (SCC). Main risk factors are smoking, heavy alcohol use, and HPV infection (especially for oropharyngeal cancer). When caught early, survival rates are high. 🚨 See your dentist or GP urgently if you have: a mouth ulcer that has not healed in 3 weeks; a red or white patch inside the mouth; a lump or swelling in the mouth, jaw, or neck; persistent difficulty swallowing or a sore throat. These need same-day or 2-week-wait urgent referral.

Antibiotic prophylaxis before dental work
Most patients do NOT need antibiotics before dental treatment. Current NICE and BHF guidance (2008, reaffirmed) says prophylaxis is NOT recommended for most cardiac conditions, including valve disease, prior endocarditis (unless specified by specialist), and prosthetic joints. However, some specialist teams may still advise it in individual cases — always check with your cardiologist or consultant if you are unsure. If you are severely immunosuppressed, discuss with your GP or specialist before dental procedures.

Bisphosphonates and dental extractions
Bisphosphonates (alendronic acid, risedronate, zoledronic acid) and denosumab slow bone turnover. This is valuable for treating osteoporosis and bone metastases — but it means that jaw bone heals very slowly after trauma, including extractions. Medication-related osteonecrosis of the jaw (MRONJ) is a rare but serious complication: exposed jaw bone that fails to heal. Risk is highest with IV bisphosphonates (used in cancer). Before starting bisphosphonates, you should ideally have a dental review to address any needed extractions. If you are already on them, inform your dentist — they will plan treatment carefully and may need specialist advice before extraction.

Useful links
🔗 Oral Health Foundation — dentalhealth.org
🔗 Mouth Cancer Foundation — mouthcancer.org
🔗 NHS Dental Health — nhs.uk
🔗 NHS Oral Cancer — nhs.uk
🔗 Dry Mouth Information — drymouth.info

🌿 Medical Cannabis

💼 My Prescription
✓ Saved
🌿 Current Product & Dosing
✓ Saved
🌿 Product & Effect Log

Record each product tried, its cannabinoid profile, and your overall effect rating.

Date Product / Brand Form THC % CBD % Dose (mg) Overall Effect (0–10) Side Effects Notes
✓ Saved
📊 Symptom Response Log

Track how well each session or product relieves your target symptom.

Date Symptom Treated Score Before (0–10) Score After (0–10) Product Used Duration of Effect Notes
✓ Saved
⚠️ Side Effects Log
Date Side Effect Severity Product / Dose at time Action Taken Notes
✓ Saved
📅 Clinical Review Log
Date Clinician Clinic / Hospital Outcomes / Key Points Prescription Changed? Next Review Notes
✓ Saved
🚗 Driving & Legal Status
⚠️
Zero-tolerance drug-drive law applies to prescribed patients. UK law sets a legal limit of 2 µg/L blood THC for driving. This limit can be exceeded even at therapeutic doses. Having a prescription does not provide a legal defence. Always discuss driving with your prescriber before starting treatment.
✓ Saved
✈️ Travel with Medical Cannabis
⚠️
UK prescriptions are not recognised in most other countries. Carrying medical cannabis across international borders — even with a prescription — may be illegal. Some countries (e.g. Netherlands) have a process for travel permits; most do not. Always check before travelling. Contact the Home Office for guidance on UK export certificates.
✓ Saved
📚 Medical Cannabis — Information Hub
Medical cannabis has been legally prescribable in the UK since November 2018. It is a Schedule 2 controlled drug — legal only when prescribed by a specialist clinician. This hub explains what it is, the rules around driving and travel, and where to find support.
  • THC (tetrahydrocannabinol) The psychoactive component. Responsible for pain relief, appetite stimulation, and nausea reduction — but also potential cognitive effects and anxiety at high doses.
  • CBD (cannabidiol) Non-psychoactive. Used for epilepsy, anxiety, and inflammation. Does not cause a "high." Epidyolex is the licensed CBD medicine for certain epilepsy types.
  • Sativex (nabiximols) An oromucosal spray containing a 1:1 THC:CBD ratio. Licensed in the UK for spasticity in MS.
  • Epidyolex (cannabidiol oral solution) Licensed for Dravet syndrome, Lennox-Gastaut syndrome, and TSC-associated seizures. CBD only — no THC.
  • Legal status Medical cannabis is a Schedule 2 controlled drug in the UK. It can only be prescribed by a specialist (not a GP) and dispensed through licensed pharmacies. Recreational use remains illegal.
🚗 Driving — Zero Tolerance Law

The UK drug-drive law (Road Traffic Act 1988, amended 2015) sets a legal blood THC limit of 2 µg/L. Therapeutic doses of medical cannabis can exceed this limit. There is no medical exemption for THC — a prescription is not a defence in court. The law does allow a "statutory medical defence" if: (1) you took the drug as directed, (2) driving was not impaired, and (3) you had a valid prescription. However, this defence is uncertain and contested. Always discuss driving with your prescriber.

✈️ Travel Warning

Most countries do not recognise UK medical cannabis prescriptions. Carrying it across borders without prior authorisation from both countries may result in arrest and prosecution. The Netherlands has a specific permit system; the USA, Australia, most of Europe, and Asia do not. Contact the Home Office Drugs Licensing team for export certificates. Check the destination country's embassy guidance before any trip.

  • Common side effects Dry mouth, fatigue, dizziness, increased heart rate, changes to appetite, short-term memory effects, anxiety (particularly with high-THC products). Usually dose-dependent and manageable by reducing dose.
  • Drug interactions CNS depressants (opioids, benzodiazepines, alcohol) — additive sedation. Anticoagulants (warfarin) — cannabis may increase bleeding risk. Antiepileptics — variable interactions. Statins and some immunosuppressants — CYP450 enzyme effects. Always tell your prescriber about all medications.
  • Getting a prescription NHS prescriptions are rare and typically limited to Epidyolex (epilepsy) and Sativex (MS). Most patients use private clinics. Reputable UK clinics include Sapphire Medical Clinics, Treat It, CBPM (Cannabis Based Pain Management), Integro Medical Clinics, and Drug Science (Project Twenty21).
  • Cost Private prescriptions typically cost £150–£350/month depending on product and dose. Some insurance policies may contribute. No NHS funding for most products except the two licensed medicines.
Useful resources:
  • Drug Science / Project Twenty21 — independent medical cannabis research
  • UKCANN — patient advocacy and information
  • Cannabis Patient Advocacy & Support Service (CPASS)
  • NICE guidance NG144 — cannabis-based medicinal products
  • Home Office Drug Licensing — for travel certificates
  • DVLA — guidance on medical conditions and driving
Keep a printed copy of your prescription letter in your bag at all times. If stopped by police, show it immediately — it does not provide a legal defence for drug-driving but demonstrates you are a prescribed patient.

🚿 Continence & Bladder/Bowel Health

🔍 My Continence Conditions

Select the conditions that apply to you to reveal detailed record cards.

✓ Saved
🚽 Urinary Incontinence & Overactive Bladder
✓ Saved
🫀 Bowel Incontinence & Constipation
✓ Saved
🧪 Catheter Details
✓ Saved
🧠 Neurogenic Bladder & Bowel
⚠️
Autonomic Dysreflexia (AD) — if you are at risk, ensure all clinicians are aware before any bladder or bowel procedure. Blocked catheter, constipation, pressure sores, or any painful stimulus below the level of injury can trigger a potentially life-threatening rise in blood pressure. Call 999 if: severe headache, blotchy skin, profuse sweating, blurred vision. Remove the cause immediately (unblock catheter / evacuate bowel).
✓ Saved
👥 My Continence Care Team
✓ Saved
📓 Bladder & Bowel Diary

Record fluid intake, urine output, leakage episodes, urgency, and bowel movements. Use this diary to share with your continence nurse or urologist.

Date Time Fluid In (ml) Urine Out (ml) Leakage Urgency Bowel Notes
✓ Saved
🧪 Catheter Record
✓ Saved
💊 Continence Medications

Record bladder and bowel medications prescribed for continence management.

Drug Dose Frequency Notes
✓ Saved
🛍️ Continence Products
✓ Saved
🔧 Surgical Interventions
✓ Saved
🏃 Pelvic Floor Physiotherapy
✓ Saved
📚 Continence & Bladder/Bowel — Information Hub
Bladder and bowel problems affect millions of people in the UK. They are common, treatable, and nothing to be embarrassed about. This hub explains the key conditions, what your symptoms might mean, and when to seek urgent help.
  • Stress incontinence Leakage of urine when coughing, sneezing, laughing, or exercising — caused by weakness of the pelvic floor muscles or urethral sphincter. Common after childbirth, surgery (e.g. prostatectomy), or with age. First-line treatment is pelvic floor exercises.
  • Urge incontinence / OAB A sudden, strong urge to pass urine that is difficult to defer, often leading to leakage before reaching the toilet. Caused by overactivity of the detrusor (bladder) muscle. Managed with bladder retraining, pelvic floor exercises, and medications (e.g. solifenacin, mirabegron).
  • Mixed incontinence A combination of stress and urge incontinence — very common. Treatment addresses both components.
  • Overflow incontinence Incomplete bladder emptying leading to frequent small leakages. Often caused by an enlarged prostate, nerve damage, or a blocked urethra. Catheterisation may be required.
  • Bowel (faecal) incontinence Inability to control bowel movements, leading to unexpected leakage of stool. Causes include weak sphincter muscles, nerve damage, diarrhoea, or constipation overflow. A bowel diary and referral to a colorectal team are important first steps.
  • Bristol Stool Scale A visual guide to stool types. Types 3–4 are considered normal. Types 1–2 suggest constipation; types 6–7 suggest diarrhoea. Record your usual type in the diary to help your clinical team.
  • Catheter-associated UTI (CAUTI) UTIs are more common in people with indwelling catheters. Signs include cloudy/offensive urine, fever, pain, confusion, or increased leakage around the catheter. Blood alone (haematuria) is not a sign of UTI — but any new UTI symptoms should be reported to your GP or district nurse promptly.
  • Pelvic floor exercises The most effective first-line treatment for stress incontinence and OAB. Must be done correctly and consistently — a pelvic floor physiotherapist can assess technique. Digital apps (e.g. Squeezy — NHS-approved) can guide home exercise programmes.
🚨 When to seek urgent help
  • Blood in urine (haematuria) — refer to GP within 2 weeks. If painless, this is a red flag for bladder cancer.
  • Blood in stool — refer to GP within 2 weeks. Red flag for bowel cancer.
  • New loss of bladder or bowel control with back pain or leg weakness — this may indicate cauda equina syndrome. Go to A&E immediately or call 999.
  • Catheter blocked for more than 2–4 hours — contact district nurse or urology urgently. In neurogenic patients, risk of autonomic dysreflexia.
  • Signs of urosepsis — fever, confusion, rapid heart rate, low blood pressure in a catheterised patient. Call 999.
  • Transanal irrigation (TAI) A method of bowel management where water is introduced into the rectum via a catheter to wash out stool. Used in neurogenic bowel, chronic constipation, and faecal incontinence. Brands include Peristeen (Coloplast) and Navina (Wellspect).
  • SNS (sacral nerve stimulation) A device implanted near the sacral nerves that sends electrical impulses to improve bladder or bowel control. Used for urge incontinence and faecal incontinence not responding to other treatments.
  • Botox (onabotulinumtoxin A) Injected directly into the bladder wall under cystoscopy to reduce detrusor overactivity. Lasts 6–12 months. Used for OAB when medications have failed. Risk of urinary retention — may require temporary catheterisation.
Useful resources:
  • Bladder & Bowel UK — bbuk.org.uk — helpline, resources, product advice
  • Bladder & Bowel Community — bladderandbowel.org
  • ERIC (Children's bowel & bladder charity) — eric.org.uk
  • Macmillan Cancer Support — continence support for cancer patients
  • Squeezy app — NHS-recommended pelvic floor exercise app
  • Coloplast care line — 0800 220 622 — catheter and stoma support
Keep a 3-day bladder and bowel diary before any continence appointment. Your continence nurse or urologist will ask for one — having it ready will help them assess your pattern quickly and recommend the right treatment.

Children's Health

Parent-managed records for your children. Each child has their own complete health record, immunisation checklist, and medication log.

Add a record for each of your children. All records are saved together.

✓ Saved

Personal Child Health Record (Red Book)

Developmental Milestones & Concerns

NHS Newborn Screening

Child's Healthcare Team

✓ Saved

🚨 Call 999 Immediately

  • Not breathing or severe difficulty breathing
  • Unresponsive / not waking up
  • Seizure lasting more than 5 minutes, or their first ever seizure
  • Non-blanching rash (glass test — rash stays when pressed) — possible meningitis
  • Severe allergic reaction — face or throat swelling, struggling to breathe
  • Suspected poisoning or swallowed something dangerous
  • Major trauma, serious burns, or suspected broken bone with deformity
  • Sudden severe headache unlike anything before (thunderclap)

⚠️ Call 111 or See Urgent GP

  • Fever in a baby under 3 months (any temperature)
  • High fever (over 39℃) not coming down with paracetamol or ibuprofen
  • Febrile convulsion — child has recovered but has never had one before
  • Signs of dehydration — no wet nappy in 12 hours, sunken fontanelle, dry mouth
  • Ear pain (especially in young children)
  • Vomiting or diarrhoea lasting more than 24 hours in a child under 2
  • Rash you are unsure about
  • Persistent crying in a baby that cannot be soothed

ℹ️ Information Hub — Children's Health

This section is managed by a parent or carer. Use it to keep one place for all of your child's health information — especially useful at hospital appointments, A&E, or when speaking to a new clinician.
  • Red Book (PCHR)The Personal Child Health Record is given at birth. It holds growth charts, development checks, and immunisation records. Keep it safe — bring it to every appointment.
  • EHCPAn Education, Health and Care Plan is a legal document for children with special educational needs or disabilities (SEND). Written by the local authority, reviewed annually. You have the right to request one if you think your child needs one.
  • NHS Vaccination ScheduleAll NHS vaccines are free. Missed vaccines can be caught up at any age — speak to your GP. The full schedule is shown inside each child's immunisation record.
  • Healthy Child ProgrammeThe NHS offers regular health and development checks from birth to age 5 (and beyond for children with additional needs), carried out by health visitors and GPs.
  • Febrile ConvulsionA fit caused by a high temperature. Frightening but usually harmless. Lay the child on their side, do not restrain them. If it lasts more than 5 minutes, call 999.
  • Meningitis RashA dark red or purple rash that does not fade when a glass is pressed against it. This is a medical emergency — call 999 immediately.
  • CAMHSChild and Adolescent Mental Health Services. Your GP can refer your child if you are concerned about their mental health or emotional wellbeing.
Useful resources: NHS Healthy Child Programme — nhs.uk/conditions/baby | Contact (charity for families with disabled children) — contact.org.uk | ERIC (children's continence charity) — eric.org.uk | Young Minds (CAMHS) — youngminds.org.uk | IPSEA (EHCP advice) — ipsea.org.uk

🧩 Learning Disabilities & Neurodevelopmental

🔍 Diagnosis & Background
✓ Saved
💬 Communication Needs
✓ Saved
🌡️ Sensory & Behaviour
✓ Saved
👥 Care Team
✓ Saved
📅 Annual Health Check Log

Annual health checks are a legal entitlement for all adults with a learning disability on the GP register. Record each check here.

Date GP / Clinician Health Action Plan issued Key findings Follow-up actions
✓ Saved
⚖️ Reasonable Adjustments
✓ Saved
⚖️ Mental Capacity Act
✓ Saved
🎓 Education & Employment
✓ Saved
💊 Medications
Drug name Dose Frequency Reason / Condition Prescriber
✓ Saved
🩺 Physical Health Monitoring
✓ Saved
🔬 Specialist Screenings (Down's Syndrome)

These screenings are recommended for people with Down's syndrome. Tick as applicable.

✓ Saved
📄 Behaviour Support Plan
✓ Saved

ℹ️ Learning Disabilities — Information Hub

This information is for general reference only and does not replace advice from your clinical team.

What is a Learning Disability?

A learning disability affects how a person learns, understands information, and copes independently. It is not a mental illness. It is lifelong and present from birth or early development. It ranges from mild (able to live semi-independently) to profound (requiring full-time support for all aspects of daily life).

Annual Health Check — Your Legal Right

All adults with a learning disability who are on the GP Learning Disabilities Register are entitled to a free annual health check. This is a legal entitlement under the NHS. The check should result in a Health Action Plan — a written summary of your health needs and how they will be met. If your GP has not offered you an annual health check, ask for one. You cannot be refused.

Reasonable Adjustments — What the NHS Must Do

Under the Equality Act 2010, the NHS is legally required to make reasonable adjustments for people with learning disabilities. This includes:

  • Longer or double appointments
  • Easy Read letters and information
  • Allowing a carer, family member, or advocate to be present
  • Flagging your needs on your GP and hospital record
  • Accepting a hospital passport

Mental Capacity Act 2005

Everyone is assumed to have mental capacity unless assessed otherwise. Capacity is decision-specific and time-specific — someone may have capacity to decide what to eat but not to consent to an operation. If a person lacks capacity for a specific decision, any decision made on their behalf must be in their best interests and must be the least restrictive option available.

Hospital Passport

A hospital passport (sometimes called a "This Is Me" document) is a short document you bring to every hospital appointment. It tells clinicians: how you communicate, what helps you, what doesn't help, your key medications and allergies, and who to contact. Ask your community LD nurse or GP for a template. Having one can make the difference between a frightening experience and a manageable one.

Deprivation of Liberty Safeguards (DoLS)

DoLS is a legal framework that protects people who lack capacity and are being cared for in a way that restricts their freedom (e.g. in a care home or hospital). It ensures any deprivation of liberty is lawful, necessary, and in the person's best interests. DoLS must be authorised by the local authority and reviewed regularly.

Useful Resources

  • Mencap — mencap.org.uk — the leading UK learning disability charity
  • Scope — scope.org.uk — disability equality charity
  • Down's Syndrome Association — downs-syndrome.org.uk
  • NHS — Learning Disabilities Annual Health Check
  • Fragile X Society — fragilex.org.uk

🦯 Frailty & Falls Prevention

📊 Clinical Frailty Assessment
⚠️ Falls Risk
🦴 Bone Health
👥 Care Team
✓ Saved
📉 Falls Log
Date Time of day Location Injury sustained Ambulance called Admitted to hospital Notes
💊 Medications Review Log
Date Reviewed by Medications stopped Medications changed Reason
✓ Saved
🦯 Walking Aids & Equipment
🏠 Home Adaptations
📋 Referrals & Support
🏃 Exercise & Lifestyle
✓ Saved

ℹ️ About Frailty & Falls Prevention

Clinical Frailty Scale

Frailty is not just about age — it is about how much reserve the body has left to cope with illness, injury, or surgery. The Clinical Frailty Scale (CFS) runs from 1 (very fit) to 9 (terminally ill) and is used in virtually every hospital admission for older adults. A score of 5 or above means you may need extra support, adjustments to treatment, or a different approach to care. Knowing your score and sharing it with every clinician you see can make a real difference to the care you receive.

Falls

One in three adults over 65 and half of adults over 80 fall at least once a year. Falls are the leading cause of A&E admissions in older people. Most falls are preventable. Strength and balance exercises — such as the Otago programme — reduce falls by up to 40%. If you have fallen more than once, or once and been injured, ask your GP for a referral to a falls clinic.

Bone Health & Osteoporosis

Osteoporosis makes bones fragile and more likely to break. It often has no symptoms until a fracture happens. DEXA scans measure bone density — a T-score of -2.5 or below means osteoporosis; between -1.0 and -2.5 means osteopenia (low bone density). Bone-protecting medications (bisphosphonates such as alendronic acid) significantly reduce fracture risk. Vitamin D and calcium supplements support bone strength, especially if you are housebound or spend little time outdoors.

Polypharmacy & Medication Review

Taking 5 or more medications (polypharmacy) increases the risk of falls. Blood pressure tablets, diuretics (water tablets), sedatives, sleeping tablets, and some antidepressants can all affect balance, blood pressure, and alertness. An annual medication review with your GP or pharmacist can identify drugs that should be stopped or changed. Ask specifically about falls risk when you have your review.

Personal Alarm

A pendant or wrist alarm lets you call for help immediately if you fall. This is especially important if you live alone. Alarms are available through your local council's community alarm service, Age UK, or private providers. Ask your GP or occupational therapist for a referral — some councils provide them free of charge.

When to Call 999

  • A fall with suspected fracture (hip, wrist, spine) — do not try to move, call 999
  • A fall with loss of consciousness or head injury
  • Unable to get up from the floor after a fall
  • Sudden severe dizziness, facial drooping, arm weakness or speech problems — possible stroke

Useful Links

  • Age UK — ageuk.org.uk — falls prevention advice, pendant alarm guidance, home adaptations
  • NHS Falls Prevention — causes, prevention, referral information
  • Chartered Society of Physiotherapy — csp.org.uk — falls resources and physiotherapy
  • Royal Osteoporosis Society — theros.org.uk — bone health, DEXA, medication guidance

🦶 Podiatry & Foot Health

🏥 Podiatry Team
✓ Saved
🩹 Active Wound Summary
📏 Wound Measurement Log
Date Length (cm) Width (cm) Depth (cm) Wound bed Exudate Dressing used Next review
✓ Saved
🔪 Nail Surgery Record
👟 Footwear
💊 Foot Health Medications
Drug Dose Frequency Reason
🛡️ Self-Care & Prevention
✓ Saved
ℹ️ About Podiatry & Foot Health
Podiatry is an NHS allied health profession specialising in the assessment, diagnosis, and treatment of conditions affecting the feet and lower limbs. For people with diabetes, poor circulation, or nerve damage, routine foot care can prevent serious complications including amputation.

Why podiatry matters

The feet are often overlooked until a serious problem develops. For people with diabetes, poor circulation, or neuropathy, a small foot problem can become a major medical emergency very quickly. Regular podiatry appointments and daily foot inspection are essential preventive measures.

Diabetic foot

Diabetes damages nerves (neuropathy) and blood vessels (peripheral vascular disease) in the feet. Many diabetic patients cannot feel pain in their feet due to nerve damage. A blister or small cut can become an infected ulcer within days if undetected. All people with diabetes are entitled to an annual foot examination at their GP surgery or diabetes clinic.

NICE diabetic foot risk categories

  • Low risk — annual foot check at GP or practice nurse
  • Moderate risk — review every 3–6 months by podiatry
  • High risk — review every 1–3 months, shared care between podiatry and diabetes team
  • Active problem — refer to the diabetic foot multidisciplinary team (MDT) within 24 hours

⚠️ When to seek urgent help

  • Any new break in the skin on a diabetic foot — same-day assessment
  • Blackening or darkening of toes — A&E immediately
  • Spreading redness, warmth, or swelling — same day
  • Foul smell from a wound — same day
  • Inability to weight-bear — A&E or call 111
  • Fever with a foot wound — A&E

Ingrowing toenails

Do not try to dig out an ingrowing nail yourself — this often makes it worse. See a podiatrist. If the toe is hot, swollen, or producing pus, see your GP as antibiotics may be needed. Partial nail avulsion (PNA) with phenolisation is a minor procedure that permanently prevents regrowth of the offending nail edge.

Useful resources

  • College of Podiatry — cop.org.uk
  • Diabetes UK — Foot care guide
  • NHS — Foot problems and podiatry

🩹 Wound Care & Tissue Viability

🏥 Wound Care Team
🗂️ Active Wounds
✓ Saved
📏 Wound Measurement Log
Date Wound ref Length (cm) Width (cm) Depth (cm) Wound bed Exudate Periwound skin Infection signs Dressing used Next change
📊 PUSH Score Log (Pressure Ulcer Healing)
Date Wound ref Surface area (0–5) Exudate (0–3) Tissue type (0–4) Total PUSH score Notes
✓ Saved
🩹 Current Dressing Regimen
🌀 Negative Pressure Wound Therapy (NPWT)
💊 Wound-Related Medications
Drug Dose Frequency Reason / wound
🥗 Nutritional Support
🛡️ Self-Care & Pressure Area Prevention
✓ Saved
ℹ️ About Wound Care & Tissue Viability
This section helps you and your care team keep track of chronic wounds — wounds that are taking longer than usual to heal. Pressure ulcers, leg ulcers, diabetic foot wounds, and fungating wounds all benefit from specialist tissue viability nurse (TVN) input.
  • Pressure ulcers (pressure sores / bedsores) — also called decubitus ulcers. Caused by sustained pressure reducing blood flow to the skin. Most preventable with regular repositioning (at least every 2–4 hours), pressure-relieving mattresses, cushions, and good nutrition. EPUAP categories 1–4 indicate severity — Category 1 is redness that does not turn white when pressed; Category 4 involves damage to muscle and bone.
  • Venous leg ulcers — caused by poor venous blood return, usually in the lower leg above the ankle. The most common type of leg ulcer in the UK. The main treatment is compression bandaging or hosiery. ABPI (ankle-brachial pressure index) must be measured before applying compression therapy.
  • Arterial leg ulcers — caused by poor arterial blood supply (peripheral artery disease). Usually painful, punched-out, and on pressure points. Do NOT apply compression without a vascular assessment — compression can be dangerous if blood supply is compromised.
  • Mixed arterial-venous ulcers — have features of both. Require specialist assessment before compression is used. ABPI between 0.5 and 0.8 may allow modified compression under specialist supervision.
  • Diabetic foot ulcers — nerve damage (neuropathy) and reduced blood supply in diabetes mean that even small wounds can become serious. All diabetic patients should have an annual foot examination. Report any new foot wound to your GP or diabetes team promptly.
  • Fungating / malignant wounds — wounds caused by cancer breaking through the skin. Management focuses on comfort: controlling odour, exudate, bleeding, and pain. Activated charcoal dressings and metronidazole gel are commonly used. Palliative care team involvement is important.
  • ABPI (ankle-brachial pressure index) — a simple test comparing blood pressure at the ankle to blood pressure at the arm. A result below 0.8 suggests reduced arterial blood supply — high compression bandaging is contraindicated. Always ask whether your ABPI has been measured before starting compression treatment.
  • EPUAP categories — European Pressure Ulcer Advisory Panel grading: Category 1 = non-blanchable redness (skin intact); Category 2 = partial skin loss (shallow open ulcer or blister); Category 3 = full thickness skin loss visible to subcutaneous fat; Category 4 = full thickness tissue loss exposing muscle, tendon, or bone.
  • Waterlow score — a risk assessment tool nurses use to identify patients at risk of developing pressure ulcers. Scores over 10 are at risk; over 15 are high risk; over 20 are very high risk. It looks at weight, skin type, sex, age, malnutrition, continence, mobility, medication, and neurological deficit.
  • PUSH score — Pressure Ulcer Scale for Healing. Tracks healing progress by scoring surface area (0–5), exudate amount (0–3), and tissue type (0–4). A falling total score means the wound is healing.
  • NPWT (negative pressure wound therapy / VAC therapy) — a dressing system that uses gentle suction to remove excess fluid and promote healing. Often used for complex surgical wounds, diabetic foot wounds, and large pressure ulcers. Common brands include V.A.C. (KCI) and PICO (Smith & Nephew).
  • Nutrition and wound healing — poor nutrition significantly slows healing. Protein, vitamin C, and zinc are essential. Complex patients receiving TPN or enteral nutrition should discuss wound healing with their dietitian and IV/tube feed team. Ask for a MUST (Malnutrition Universal Screening Tool) score at every wound assessment if you are underweight or have a reduced appetite.
  • Infection signs — increased pain, heat, redness, swelling, purulent (cloudy or yellow/green) exudate, or foul odour. Report any of these to your nurse or GP promptly. Delayed treatment of wound infection can lead to serious systemic infection (sepsis).
When to seek urgent help:
  • Spreading redness up the limb (ascending cellulitis) — GP urgently or A&E
  • Fever combined with a worsening wound — possible sepsis, call 999 or go to A&E
  • Rapidly deteriorating wound that is getting significantly larger
  • Black, gangrenous, or foul-smelling tissue appearing for the first time
  • Wound with sudden heavy bleeding that does not stop with pressure
Useful links: Wounds UK · Tissue Viability Society (TVS) · NHS — Leg Ulcers · NHS — Pressure Ulcers

🗣️ Speech, Language & Communication

🏥 SALT Team
💬 Communication
✓ Saved
⚠️ Dysphagia Overview
🍽️ Food & Fluid Texture
📝 Swallowing Log
Date Meal/time Food texture tried Fluid level tried Coughing Wet voice after Took >30 min Notes
✓ Saved
📋 SALT Review Log
Date Clinician Assessment tool used Communication outcome Swallowing outcome Recommendations Next review
🎯 Goals & Progress
👥 Multidisciplinary Team
✓ Saved
ℹ️ Speech & Language Therapy — Information Hub

What is SALT?

Speech and Language Therapists (SLTs) assess and treat problems with communication, speech, language, voice, and swallowing. They work in hospitals, community clinics, schools, and care homes. They are a core member of the NHS multidisciplinary team for stroke, cancer, neurology, and learning disability services.

Aphasia

Aphasia is a language disorder usually caused by stroke or brain injury. It affects speaking, understanding, reading, and writing — but it does not affect intelligence. People with aphasia know what they want to say; they just have difficulty getting the words out or understanding what is said to them. Speak slowly, use short sentences, allow extra time, and use visual supports where possible.

Dysarthria

Dysarthria is a motor speech disorder caused by weakness or lack of coordination of the muscles used for speech. It is common in Parkinson's disease, MS, MND, and stroke. Speech may be slurred, slow, or difficult to understand. SALT can provide clear speech techniques, voice amplifiers, and AAC to help.

Dysphagia (Swallowing Difficulty)

Dysphagia affects up to 50% of stroke patients and is very common in MND and Parkinson's disease. Silent aspiration — food or fluid entering the airway without coughing — can cause aspiration pneumonia, which can be life-threatening. Always follow your SLT's texture and fluid recommendations precisely. Never try to progress textures without SALT guidance.

IDDSI — Food Texture & Fluid Levels

The International Dysphagia Diet Standardisation Initiative (IDDSI) provides a universal framework for food textures and fluid thicknesses, numbered 0–7. Level 7 is regular food; Level 0 is thin (normal) fluid. Your SLT will prescribe the safest level for you based on your swallowing assessment. IDDSI labels are now used on hospital menus and care home menus across the UK.

AAC (Augmentative and Alternative Communication)

AAC includes everything from simple picture boards and Makaton signing to high-tech eye-gaze devices and speech-generating software. The NHS can fund AAC equipment through specialist regional services. A communication passport — a short document explaining how to communicate with you — is one of the most important tools you can have for hospital admissions.

When to Seek Urgent Help

  • New or sudden difficulty swallowing — contact your SALT team or GP the same day
  • Choking episodes — review your safe swallowing strategies with your SLT urgently
  • Unexplained weight loss from difficulty eating — dietitian referral needed
  • Recurrent chest infections — may indicate aspiration pneumonia; urgent GP review
  • Sudden loss of speech or new slurred speech — call 999 (possible stroke)
  • Complete inability to swallow — call 999

Useful Links

  • Royal College of Speech & Language Therapists — rcslt.org
  • Aphasia Now — aphasianow.org
  • Motor Neurone Disease Association — mndassociation.org
  • Stroke Association — stroke.org.uk
  • Headway (brain injury) — headway.org.uk
  • STAMMA (stammering) — stamma.org

🍽️ Eating Disorders

🩺 Diagnosis & Background

🥦 ARFID-Specific Details

Complete this card if your diagnosis is ARFID (Avoidant/Restrictive Food Intake Disorder).

✓ Saved

⚖️ Weight Monitoring Log

Date Weight (kg) BMI Clinician Notes

🧪 Electrolytes Log

Date K⁺ (mmol/L) Na⁺ (mmol/L) Mg²⁺ (mmol/L) Phosphate (mmol/L) Albumin (g/L) Clinician

❤️ ECG Monitoring Log

Date QTc (ms) HR (bpm) Findings Clinician Notes

⚠️ Refeeding Syndrome Risk

✓ Saved

🏥 Current Treatment

🥗 Dietitian

👨‍👩‍👧 Carer / Family Involvement

💊 Medication Log

Drug Dose Frequency Indication Start Date Notes

📋 Review Log

Date Clinician Service/Team Review Type Outcome/Decisions Next Review Date
✓ Saved

ℹ️ Information Hub — Eating Disorders

Understanding Eating Disorders

Anorexia Nervosa (AN) — Severe restriction of food intake driven by intense fear of weight gain and distorted body image. Includes a restrictive subtype and a binge-purge subtype. AN has the highest mortality rate of any mental health condition.

Bulimia Nervosa (BN) — Cycles of binge eating (consuming large amounts rapidly) followed by compensatory behaviours such as purging, fasting, or excessive exercise. Physical risks include low potassium, dental erosion, and oesophageal damage.

Binge Eating Disorder (BED) — Recurrent episodes of eating large quantities with a sense of loss of control, without compensatory purging. The most common eating disorder in the UK. Associated with significant psychological distress.

ARFID (Avoidant/Restrictive Food Intake Disorder) — Food avoidance not driven by body image concerns — instead linked to sensory sensitivities, fear of choking, or very low appetite. Common in autistic people and those with anxiety. Can cause serious nutritional deficiency and sometimes requires enteral (tube) feeding.

OSFED (Other Specified Feeding or Eating Disorder) — A clinically significant eating disorder that does not fully meet the criteria for AN, BN, or BED. Includes atypical anorexia nervosa (where weight remains in a normal range despite AN-type behaviours), purging disorder, and night eating syndrome. Equally serious — requires the same level of care.

Physical Health Risks

  • Cardiac arrhythmia — Electrolyte imbalances and low body weight can cause dangerous heart rhythm disturbances. Prolonged QTc on ECG is a medical emergency risk.
  • Electrolyte imbalance — Low potassium (hypokalaemia), low phosphate, and low magnesium are common, especially in purging behaviours. Can cause muscle weakness, cramps, and cardiac arrest.
  • Bone density loss — Prolonged malnutrition leads to osteopenia and osteoporosis, increasing fracture risk.
  • Refeeding syndrome — A dangerous and potentially fatal shift in electrolytes (especially phosphate) that can occur when nutrition is restarted too quickly after a period of starvation. Requires close medical supervision in hospital.
  • Bradycardia — A resting heart rate below 60 bpm is common in AN and can indicate dangerously low cardiac function.

When to Call 999

  • Collapse or loss of consciousness
  • Heart rate below 40 bpm or irregular heartbeat
  • Severe hypoglycaemia (very low blood sugar) with confusion
  • Chest pain or cardiac arrhythmia
  • Seizure
  • Extreme muscle weakness (may indicate severe electrolyte imbalance)

Refeeding Syndrome — Explained

When a person who has been severely malnourished begins eating again, the body starts to shift minerals (especially phosphate, potassium, and magnesium) from the blood into cells. This sudden drop in blood electrolytes can cause heart failure, respiratory failure, seizures, and death. Refeeding must be done slowly, under medical supervision, with close monitoring of electrolytes. NICE guidance recommends starting at no more than 5–10 kcal/kg/day in high-risk patients.

Treatment Approaches

  • CBT-E (Enhanced Cognitive Behavioural Therapy) — NICE-recommended first-line therapy for adults with BN and BED, and used in AN. Addresses distorted thoughts about food, weight, and body image.
  • FBT (Family-Based Treatment / Maudsley Approach) — First-line for children and adolescents with AN. Involves family in all aspects of refeeding and recovery.
  • DBT (Dialectical Behaviour Therapy) — Used in BN, BED, and eating disorders linked to emotional dysregulation or BPD/EUPD.
  • MANTRA (Maudsley Anorexia Nervosa Treatment for Adults) — Specialist outpatient therapy for adults with AN, focusing on cognitive and interpersonal factors.
  • Day programmes and inpatient units — For medically unstable or severely unwell patients requiring intensive support.

Useful Links

  • BEAT Eating Disorders — beateatingdisorders.org.uk
  • ARFID Awareness UK — arfidawarenessuk.org
  • First Steps ED — firststepsed.co.uk
  • NHS — Eating Disorders Overview

💼 Occupational Health & Work Capability

🏢 Employment Status

✓ Saved

🩺 Occupational Health (OH)

✓ Saved

⚖️ Reasonable Adjustments

✓ Saved

🏛️ Access to Work (AtW)

✓ Saved

📋 Fit Note Log

Date Issued Valid From Valid To Issuing Clinician Fit Note Type Comments
✓ Saved

🗓️ Absence Log

Start Date Return Date Reason Days Lost HR Notified Notes
✓ Saved

🔄 Return to Work Plan

✓ Saved

💷 Benefits Record

ℹ️ Record purposes only — This section records benefit information only — it is not financial or legal advice. For advice, contact Citizens Advice or a benefits specialist.
✓ Saved

📞 Key Contacts

✓ Saved

ℹ️ Occupational Health & Work — Information Hub

What is Occupational Health?

Occupational Health (OH) is a specialist service that focuses on how your health affects your ability to work, and how your work affects your health. Your employer can refer you to OH, or you can ask your GP to do so. An OH physician or nurse will assess your situation and recommend adjustments to help you stay in work safely, or support a return to work after illness.

OH reports are confidential — your employer will receive recommendations (such as "light duties" or "flexible hours") but not detailed medical information. You must consent to the report being shared.

Fit Notes Explained

A fit note (also called a "Statement of Fitness for Work") is issued by your GP or hospital doctor. It replaced the old "sick note." There are two types:

  • Not fit for work — you should not be at work at all during this period.
  • May be fit for work — your doctor thinks you may be able to work with adjustments such as: modified duties, phased return to work, altered hours, or workplace adaptations.

You do not need a fit note for the first 7 days off work — self-certification is sufficient. After 7 days, your employer may ask for a fit note.

Access to Work

Access to Work (AtW) is a government grant scheme administered by the DWP that helps people with health conditions or disabilities stay in or get into employment. It can pay for:

  • A support worker to help with tasks you find difficult
  • Travel to work if public transport is not accessible
  • Specialist equipment adapted to your needs
  • Mental health support (up to 9 months of specialist sessions)
  • A British Sign Language interpreter

You can apply online at GOV.UK. Your employer does not need to be involved in the application. The grant is in addition to any reasonable adjustments your employer must make by law.

Reasonable Adjustments

Under the Equality Act 2010, employers in Great Britain are legally required to make "reasonable adjustments" for employees with a disability or long-term health condition. A condition qualifies if it has a substantial, long-term adverse effect on your ability to carry out normal day-to-day activities (generally 12 months or more).

Examples of reasonable adjustments include:

  • Flexible start and finish times
  • Working from home (full or partial)
  • Reduced or amended duties
  • Adapted workstation or specialist equipment
  • Allocated closer parking space
  • Extra rest breaks
  • Phased return following absence
  • Time off for medical appointments (paid or unpaid)

"Reasonable" depends on the size of the employer, the cost, and how practical the change is. If your employer refuses, you can raise a grievance or seek advice from Acas or a union.

Benefits at a Glance

This is for record purposes only — it is not financial or legal advice. Contact Citizens Advice for personalised support.

  • PIP (Personal Independence Payment) — for people aged 16–64 with a long-term health condition or disability that affects daily living or mobility. Not means-tested. Has two components (daily living and mobility) each with standard or enhanced rate.
  • ESA (Employment & Support Allowance) — for people who cannot work due to illness or disability. Has two groups: Support Group (more severe limitations) and Work-Related Activity Group (WRAG). Being replaced by Universal Credit for new claimants.
  • DLA (Disability Living Allowance) — for people under 16, or those who were claiming before PIP was introduced. Older claimants may still receive DLA.
  • Universal Credit (UC) — a single monthly payment that includes a health/disability element (Limited Capability for Work) for those who cannot work due to their condition.
  • Attendance Allowance — for people aged 65 and over who need help with personal care due to a disability or illness. Not means-tested.
  • Carer's Allowance — for people who provide at least 35 hours of care per week for someone who receives certain disability benefits.

Useful Links

  • GOV.UK — Access to Work
  • GOV.UK — Fit Notes & Sick Leave
  • GOV.UK — Disability Confident employer scheme
  • Acas — Reasonable Adjustments
  • Citizens Advice — Benefits

📋 Conditions A–Z

⚠️
This section lists health conditions covered in this app. It is a signpost guide — use it to find the right section to record your information. For diagnosis, treatment, or medical advice, always speak to your GP or specialist.

The following rare and complex conditions have dedicated tracking panels in the 🧬 Rare & Complex Diseases section. Each panel includes specialist information, monitoring logs, and clinical guidance.

🩺 Symptoms A–Z

⚠️
This section provides general health information only. It is not a substitute for professional medical advice, diagnosis, or treatment. If you are concerned about any symptom, always contact your GP, call 111, or go to A&E. In an emergency, call 999 immediately.
🔴

Call 999 or go to A&E immediately

These symptoms may be life-threatening. Do not wait — call 999 now or have someone take you straight to A&E.

  • Chest pain or tightness, especially with sweating, arm pain, or breathlessness
  • Sudden severe headache described as "the worst of your life"
  • Sudden difficulty speaking, facial drooping, arm weakness (signs of stroke — use FAST)
  • Severe difficulty breathing or choking
  • Loss of consciousness or not responding
  • Severe allergic reaction (swollen throat, difficulty swallowing, rash spreading rapidly)
  • Coughing or vomiting large amounts of blood
  • Suspected poisoning or overdose
  • Seizure in someone who has never had one before, or a seizure lasting longer than 5 minutes
  • Severe abdominal pain that is sudden and constant
  • Sepsis signs: temperature over 38°C or under 36°C + confusion + very fast breathing + mottled/discoloured skin
🟠

Call 111 or visit an urgent treatment centre

Not life-threatening, but needs assessment today or soon. Call 111 for advice and to be directed to the right place.

  • High fever that is not responding to paracetamol or ibuprofen
  • Severe pain that is not controlled by normal painkillers
  • Sudden vision changes, redness, or pain in the eye
  • Sudden hearing loss in one or both ears
  • Worsening infection signs (increasing redness, pus, spreading redness, red streaking)
  • Urinary symptoms with back pain or fever (possible kidney infection)
  • Vomiting or diarrhoea lasting more than 24 hours with signs of dehydration
  • A rash that spreads rapidly or does not fade when pressed with a glass
  • Suspected broken bone or dislocation
  • Mental health crisis — feeling unsafe or unable to cope
  • Unexplained confusion, especially in older adults
  • New or worsening swelling in legs with pain or redness
🟢

Book a GP appointment

These symptoms need medical assessment but are not urgent emergencies. Book a routine or soon appointment with your GP.

  • Unexplained weight loss of 4 kg (9 lbs) or more over a few weeks
  • Persistent cough lasting more than 3 weeks
  • Blood in urine, even once, without an obvious cause
  • A lump or swelling that has appeared or changed
  • Persistent or unusual tiredness that is not explained by your lifestyle
  • Recurrent headaches that are new or different from your usual headaches
  • Changes in bowel habits lasting more than 3 weeks
  • Difficulty swallowing that is worsening or new
  • Persistent indigestion or heartburn over age 55, especially with weight loss
  • Night sweats that are drenching and recurring
  • Mood changes, anxiety, or low mood that is affecting daily life
  • Any symptom that worries you and is not getting better
🔵

Self-care at home

Many common symptoms can be managed at home with rest, fluids, and over-the-counter remedies. Seek help if symptoms worsen or don't improve.

  • Common cold — rest, fluids, paracetamol for temperature and aches
  • Sore throat without fever or difficulty swallowing — warm drinks, throat lozenges, saltwater gargle
  • Mild tension headache — paracetamol or ibuprofen, rest, hydration
  • Mild diarrhoea or stomach upset — clear fluids, oral rehydration salts, BRAT diet (banana, rice, apple, toast)
  • Minor cuts and grazes — clean, apply antiseptic, cover with a plaster
  • Mild hay fever — antihistamine tablets, eye drops, nasal spray
  • Mild insect bites — antihistamine cream or tablets, keep clean
  • Mild indigestion — antacid, avoid lying down after eating, review diet
  • Minor muscle ache — rest, ice/heat, gentle stretching, paracetamol
Remember: If you are ever unsure which category your symptoms fall into, always seek advice. Call 111 for free 24/7 guidance from a nurse or trained advisor. Do not delay seeking help because you think you might be wasting anyone's time — you are never wasting NHS time.

📚 Clinical Reference Guide

⚠️
General reference ranges only. These figures are typical adult values. Your personal normal range may differ. Your clinical team will always interpret your results in context — never make treatment decisions based on reference tables alone.

❤️ Normal Vital Sign Ranges

MeasurementNormal RangeUnitNotes
Blood Pressure (systolic)90 – 120mmHgAbove 140 = hypertension; below 90 = hypotension
Blood Pressure (diastolic)60 – 80mmHgAbove 90 = hypertension; below 60 = concern if symptomatic
Heart Rate (resting)60 – 100BPM>100 = tachycardia; <60 = bradycardia (may be normal in athletes)
Respiratory Rate12 – 20breaths/min>25 is a red flag; >30 = severe distress
O₂ Saturation (SpO₂)95 – 100%<92% = red flag; COPD target often 88–92%
Temperature36.1 – 37.2°C>38°C = fever; <36°C = hypothermia; both red flags with a central line
Blood Glucose (fasting)4.0 – 5.9mmol/L5.5–7.8 = pre-diabetic range; >7.0 = diabetic threshold (fasting)
Blood Glucose (2h post-meal)< 7.8mmol/L>11.1 two hours post-meal = diabetic threshold
BMI — Underweight< 18.5kg/m²Low BMI raises risk of malnutrition
BMI — Healthy weight18.5 – 24.9kg/m²General adult population
BMI — Overweight25.0 – 29.9kg/m²Increased risk of metabolic conditions
BMI — Obese≥ 30.0kg/m²Thresholds differ for South Asian, Chinese, and other populations

🩸 Common Blood Test Reference Ranges

TestNormal RangeUnitClinical Note
Full Blood Count (FBC)
Haemoglobin (Hb) — men130 – 175g/L<130 = anaemia in men
Haemoglobin (Hb) — women115 – 160g/L<115 = anaemia in women
White Blood Cells (WBC)4.0 – 11.0×10⁹/L>11 = infection/inflammation; <4 = leucopenia
Platelets150 – 400×10⁹/L<150 = thrombocytopenia; <50 = bleeding risk
Haematocrit — men40 – 54%Low = anaemia; high = dehydration or polycythaemia
Haematocrit — women36 – 47%
MCV (mean cell volume)80 – 100fL<80 = microcytic (iron); >100 = macrocytic (B12/folate)
Electrolytes
Sodium (Na⁺)135 – 145mmol/L<135 = hyponatraemia; >145 = hypernatraemia
Potassium (K⁺)3.5 – 5.3mmol/L<3.5 = hypokalaemia; >5.5 = hyperkalaemia (heart risk)
Chloride (Cl⁻)95 – 107mmol/LOften follows sodium changes
Bicarbonate22 – 29mmol/L<22 = acidosis; >29 = alkalosis
Renal Function (U&E)
Urea2.5 – 7.8mmol/LHigh = dehydration, renal impairment, high protein intake
Creatinine — men64 – 104µmol/LRises when kidneys are struggling
Creatinine — women49 – 90µmol/L
eGFR≥ 90mL/min/1.73m²60–89 = mild reduction; <60 = CKD; <15 = kidney failure
Liver Function (LFTs)
ALT (alanine aminotransferase)7 – 56U/LElevated in liver cell damage or fatty liver
AST (aspartate aminotransferase)10 – 40U/LElevated in liver or muscle damage
ALP (alkaline phosphatase)44 – 147U/LHigh in bile duct problems, bone disease
Bilirubin (total)3 – 17µmol/L>34 = visible jaundice
Albumin35 – 50g/LLow = malnutrition, liver disease, infection
GGT8 – 61U/LElevated with alcohol use, liver or bile duct disease
Thyroid
TSH0.4 – 4.0mU/L<0.4 = overactive thyroid; >4.0 = underactive thyroid
Free T49 – 24pmol/LInterpret alongside TSH
Free T33.5 – 7.8pmol/LNot always tested routinely
Diabetes & Metabolic
HbA1c (non-diabetic)< 42mmol/mol42–47 = pre-diabetes; ≥48 = diabetes
HbA1c (diabetic target)48 – 59mmol/molIndividual targets vary; discuss with your team
LDL cholesterol< 3.0mmol/L<1.8 target for high cardiovascular risk
HDL cholesterol> 1.0mmol/LHigher is better; <1.0 = increased risk
Total cholesterol< 5.0mmol/LIdeal <4.0 for high-risk patients
Triglycerides< 1.7mmol/L>5.6 = pancreatitis risk
Inflammation & Clotting
CRP (C-reactive protein)< 5mg/L>50 = significant inflammation; >200 = severe infection/sepsis
ESR (erythrocyte sedimentation rate)0 – 20mm/hrHigher in older adults and women; rises in inflammation
INR0.8 – 1.2ratioTarget 2.0–3.0 on warfarin (AF); 2.5–3.5 for mechanical heart valve
D-Dimer< 500ng/mLElevated in DVT, PE, DIC — clinical context essential
PT / Prothrombin Time11 – 14secondsProlonged in liver disease, clotting factor deficiency
Vitamins & Iron Stores
Ferritin13 – 150µg/L<13 = iron deficiency; very high = inflammation or haemochromatosis
Serum iron10 – 30µmol/LInterpret with ferritin and TIBC
Vitamin B12200 – 900ng/L<200 = deficiency; symptoms can appear <300 in some people
Folate3.0 – 17.0µg/L<3.0 = deficiency; important in pregnancy
Vitamin D50 – 175nmol/L<25 = deficient; 25–49 = insufficient; NHS supplement threshold <50

📖 Medical Abbreviations A–Z

AbbreviationMeaning
A&EAccident & Emergency — the hospital emergency department
ACSAcute Coronary Syndrome — umbrella term for heart attack and unstable angina
ADRTAdvance Decision to Refuse Treatment — a legal document refusing specific treatments in advance
AF / AFibAtrial Fibrillation — an irregular heart rhythm
AKIAcute Kidney Injury — sudden loss of kidney function
ALTAlanine Aminotransferase — a liver enzyme; high levels suggest liver cell damage
ALPAlkaline Phosphatase — enzyme raised in liver/bile duct and bone problems
ARDSAcute Respiratory Distress Syndrome — severe lung failure requiring ventilation
ASTAspartate Aminotransferase — liver/muscle enzyme; rises in damage
AVPUAlert / Voice / Pain / Unresponsive — rapid consciousness scale used by paramedics
BiPAP / CPAPBi-level / Continuous Positive Airway Pressure — breathing support machines (often used in sleep apnoea)
BMIBody Mass Index — weight (kg) divided by height (m) squared
BPBlood Pressure — recorded as systolic/diastolic (e.g. 120/80 mmHg)
BPMBeats Per Minute — heart rate unit
CABGCoronary Artery Bypass Graft — open-heart surgery to bypass blocked arteries
CCFCongestive Cardiac Failure — heart failure causing fluid build-up
CKDChronic Kidney Disease — long-term loss of kidney function, staged 1–5
COPDChronic Obstructive Pulmonary Disease — umbrella term for emphysema and chronic bronchitis
CRPC-Reactive Protein — blood marker of inflammation or infection
CTPACT Pulmonary Angiogram — scan to detect pulmonary embolism (PE)
CVACerebrovascular Accident — medical term for a stroke
CVADCentral Venous Access Device — central line (PICC, Hickman, port)
DBPDiastolic Blood Pressure — the lower BP number
DEXADual-Energy X-ray Absorptiometry — bone density scan
DICDisseminated Intravascular Coagulation — serious clotting disorder
DNACPRDo Not Attempt Cardiopulmonary Resuscitation — a medical decision document
DVTDeep Vein Thrombosis — blood clot in a deep vein, usually the leg
ECG / EKGElectrocardiogram — records the electrical activity of the heart
eGFREstimated Glomerular Filtration Rate — measures how well kidneys are filtering
ERCPEndoscopic Retrograde Cholangiopancreatography — procedure to diagnose/treat bile duct problems
ESRErythrocyte Sedimentation Rate — blood test measuring inflammation
FBCFull Blood Count — routine blood test checking red cells, white cells and platelets
GCSGlasgow Coma Scale — 3–15 scale measuring consciousness level
GFRGlomerular Filtration Rate — kidney filtration measure (see eGFR)
GGTGamma-Glutamyl Transferase — liver enzyme; raised in liver disease and alcohol use
HbA1cGlycated Haemoglobin — average blood sugar over ~3 months; diabetes marker
HDLHigh-Density Lipoprotein — "good" cholesterol; higher is better
HRHeart Rate — beats per minute
IHDIschaemic Heart Disease — reduced blood supply to the heart muscle
INRInternational Normalised Ratio — measures blood clotting time; used to monitor warfarin
ITU / ICUIntensive Therapy Unit / Intensive Care Unit — highest level of hospital care
IVIntravenous — into a vein
LDLLow-Density Lipoprotein — "bad" cholesterol; lower is better
LFTLiver Function Tests — group of blood tests assessing liver health
LPALasting Power of Attorney — legal document appointing someone to make decisions on your behalf
MDTMulti-Disciplinary Team — group of specialists making joint decisions about your care
MIMyocardial Infarction — heart attack
MRIMagnetic Resonance Imaging — detailed scan using magnets (no radiation)
MRSAMethicillin-Resistant Staphylococcus Aureus — antibiotic-resistant bacteria
MSUMid-Stream Urine — urine sample collected after discarding the first flow
NBMNil By Mouth — nothing to eat or drink (usually before surgery or procedure)
NEWS2National Early Warning Score 2 — track-and-trigger scoring system used by NHS ward staff
NICENational Institute for Health and Care Excellence — sets NHS clinical guidelines
OOHOut Of Hours — GP or medical services outside normal working hours
PEPulmonary Embolism — blood clot in the lungs
PEGPercutaneous Endoscopic Gastrostomy — feeding tube placed directly into the stomach
PETPositron Emission Tomography — scan often used in cancer staging
PRNPro Re Nata — take as needed (medication instruction)
PTProthrombin Time — blood clotting time test
QDSQuater Die Sumendum — four times daily (medication frequency)
ReSPECTRecommended Summary Plan for Emergency Care and Treatment — personalised emergency care plan
RRRespiratory Rate — breaths per minute
SBPSystolic Blood Pressure — the higher BP number
SOB / SOBOEShortness Of Breath / Shortness Of Breath On Exertion
SpO₂ / SATSOxygen saturation — percentage of haemoglobin carrying oxygen
TDSTer Die Sumendum — three times daily (medication frequency)
TIATransient Ischaemic Attack — a "mini-stroke"; symptoms resolve within 24 hours
TPNTotal Parenteral Nutrition — feeding entirely through a vein, bypassing the gut
TSHThyroid Stimulating Hormone — key thyroid blood test; low = overactive; high = underactive
TTOTo Take Out — medications given to take home on hospital discharge
U&EUrea & Electrolytes — routine blood test checking kidney function and salt balance
UTIUrinary Tract Infection — infection in the bladder, urethra, or kidneys
VTEVenous Thromboembolism — blood clot in a vein (DVT or PE)
WBCWhite Blood Cell count — key part of the FBC; raised in infection or inflammation

📆 Calendar Hub

—
Appointment Clinical Log BG Out of Range Nurse Visit Battle Plan Personal Note

🧬 Rare & Complex Diseases

📋 My Conditions

Tick the conditions that apply to you. Only ticked panels will expand below. Each panel saves with the main Save button.

✓ Saved

🧬 Diagnosis & Genetics

Diagnosis Date
Diagnosing Specialty
Diagnosing Hospital
Mutation Status
MENIN Mutation Detail
Genetic Test Date
Genetic Counsellor
Endocrine Specialist
MDT / Specialist Centre
Next MDT Review
✓ Saved

🫀 Affected Glands & Tumour Status

Record each gland's current status and any known lesions.

Parathyroid
Status & Notes
Status
Surgery Date
Surgery Type
Pancreas / Gut
Status & Notes
Tumour Type
Status
Lesion Size
Lesion Location
Surgery Date
Pituitary
Status & Notes
Tumour Type
Status
Tumour Classification
Tumour Size
Last MRI Date
Next MRI Due
Other
Adrenal / Carcinoid / Skin
Adrenal Status
Adrenal Size
Adrenal Side
Carcinoid Type
Carcinoid Status
Skin Lesions
✓ Saved

🔬 Biochemical Results Log

Log annual surveillance blood results. Add a new entry each year.

Annual Results Entry
Date of Test
Calcium (mmol/L)
PTH (pmol/L)
Fasting Gastrin (ng/L)
Fasting Glucose (mmol/L)
Prolactin (mIU/L)
IGF-1
Chromogranin A (CgA)
Overall Interpretation
Notes
✓ Saved

📅 Surveillance Schedule

Track upcoming and completed surveillance tests and imaging.

Test / Scan Date Done Result / Finding Next Due Clinician / Hospital
✓ Saved

👨‍👩‍👧 Family Genetics Record

Log which family members have been tested and their result. First-degree relatives should be offered testing from age 5.

Relation Name (optional) Test Date Result Notes
✓ Saved
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

💡 MEN1 — Information Hub

What is MEN1?

Multiple Endocrine Neoplasia Type 1 (MEN1) is a rare inherited condition caused by a mutation in the MENIN gene on chromosome 11q13. It causes tumours — usually benign — to develop in the endocrine glands. It affects roughly 1 in 30,000 people and is inherited in an autosomal dominant pattern, meaning a 50% chance of passing it to each child.

The Three P's

🦴 Parathyroid (~95%)
Hyperparathyroidism — overactive parathyroid glands raising blood calcium (hypercalcaemia). Usually the first and most common manifestation. Symptoms: fatigue, kidney stones, bone pain, low mood.
🫀 Pancreas / Gut (~30–70%)
Gastrinomas (Zollinger-Ellison syndrome — excess stomach acid), insulinomas (low blood sugar), VIPomas, glucagonomas. May be multiple and small.
🧠 Pituitary (~30–40%)
Prolactinomas most common (causing headaches, vision changes, fertility issues). Also GH-secreting (acromegaly) or non-functioning adenomas.

Other Associated Tumours

  • Adrenal cortical tumours (usually non-functioning)
  • Carcinoid tumours (thymic, bronchial, gastric)
  • Skin lesions: angiofibromas, collagenomas, lipomas
  • Meningiomas (rare)

Key Blood Tests to Monitor

Marker What it detects Frequency
Serum Calcium + PTHHyperparathyroidismAnnually
Fasting GastrinGastrinoma / ZESAnnually
Fasting Glucose + InsulinInsulinomaAnnually
ProlactinProlactinomaAnnually
IGF-1GH-secreting tumour / acromegalyAnnually
Chromogranin ANeuroendocrine tumour activityAnnually
VIP / Glucagon / PPPancreatic NET subtypesIf indicated

Imaging Surveillance

  • MRI Pituitary — every 3–5 years (or if prolactin/IGF-1 rises)
  • CT/MRI Abdomen — every 1–3 years (pancreatic NETs)
  • Endoscopic Ultrasound — if pancreatic lesion suspected
  • DEXA Bone Scan — baseline + after parathyroidectomy
  • Chest CT — to screen for thymic/bronchial carcinoid (every 3–5 yrs)

Genetics & Family

First-degree relatives should be offered genetic testing from age 5. If the family mutation is known, predictive genetic testing can confirm or exclude MEN1. Unaffected carriers still need annual biochemical surveillance from age 5–8.

Emergency / Hospital Information

⚠️ Tell A&E / any clinician:
• I have MEN1 — a rare genetic condition affecting parathyroid, pancreas, and pituitary glands.
• Check my calcium level — I am at risk of hypercalcaemia.
• If I am confused, vomiting or in acute abdominal pain — consider hypercalcaemic crisis or gastrinoma flare.
• If I am sweating, shaking, or losing consciousness — consider insulinoma causing hypoglycaemia.
• My specialist is listed in my Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Specialist Team

Diagnosis Date
CFTR Mutation (Copy 1)
CFTR Mutation (Copy 2)
Sweat Test Result
Current CFTR Modulator
Pancreatic Insufficiency
CF-Related Diabetes (CFRD)
Chronic Lung Organism
Port-a-Cath / PICC
CF Centre
Respiratory Consultant
CF Nurse Specialist
Physiotherapist
✓ Saved

📊 Annual Review Monitoring Log

Record key results from each annual / clinic review.

DateFEV1 %FVC %Weight (kg)HbA1cSputum OrganismNotes
✓ Saved

🦠 Exacerbation Log

Log chest exacerbations and treatment episodes.

DateDurationSputum OrganismTreatmentHospital AdmissionNotes
✓ Saved

💡 Cystic Fibrosis — Information Hub

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is a life-limiting genetic condition caused by mutations in the CFTR gene (chromosome 7). It is autosomal recessive — a person needs two faulty copies to be affected. CF affects around 1 in 2,500 babies in the UK. Defective CFTR protein causes thick, sticky mucus to build up in the lungs, digestive tract, and other organs.

Key Organs Affected

🫁 Lungs
Chronic infection (Pseudomonas, Staph aureus, Burkholderia), bronchiectasis, progressive lung function decline measured by FEV1.
🫙 Pancreas
Exocrine insufficiency (malabsorption, steatorrhoea) requiring PERT enzymes. CF-related diabetes (CFRD) affects ~35% of adults.
🦴 Bones
Osteopenia/osteoporosis due to malabsorption and steroid use. Annual DEXA recommended from age 18.
🫀 Liver
Cirrhosis in ~5–10% of people with CF. Annual LFTs and ultrasound recommended.

CFTR Modulators

CFTR modulators are targeted therapies that fix the faulty protein. Eligibility depends on your mutation(s).

  • Kaftrio / Trikafta (elexacaftor/tezacaftor/ivacaftor) — for F508del (one or two copies) and other eligible mutations. Most effective modulator currently available.
  • Symkevi (tezacaftor/ivacaftor) — for those with two F508del copies or specific residual function mutations.
  • Kalydeco (ivacaftor) — for specific gating and residual function mutations (G551D etc.).

Annual Review Schedule

  • Lung function (spirometry) — every clinic visit (3-monthly)
  • Sputum / cough swab culture — every clinic visit
  • Weight, BMI, fat-soluble vitamins — every 6 months
  • HbA1c / OGTT (CFRD screening) — annually from age 10
  • DEXA bone scan — at 18, then every 2–5 years
  • Liver ultrasound + LFTs — annually
  • Chest X-ray / CT — as clinically indicated
⚠️ CF Exacerbation — Tell A&E:
• I have Cystic Fibrosis. I need sputum culture before starting antibiotics.
• Pseudomonas aeruginosa and/or MRSA status: see Contact Directory for my CF centre.
• IV access may be difficult — I may have a Port-a-Cath or PICC line.
• Do not place me in a bay with other CF patients (cross-infection risk).
• Contact my CF centre urgently — number in Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Management

Diagnosis Date
Diagnosing Specialty
Baseline Tryptase
EpiPen Prescribed
H1 Antihistamine
H2 Antihistamine
Other Mast Cell Stabiliser
Specialist
✓ Saved

⚡ Known Triggers Log

TriggerReaction TypeSeverity (1–5)First NotedCurrently Avoided
✓ Saved

📋 Reaction Log

DateTrigger (if known)SymptomsSeverityTreatment GivenEpiPen UsedA&E
✓ Saved

💡 MCAS — Information Hub

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a condition in which mast cells — immune cells found throughout the body — release chemical mediators (histamine, tryptase, prostaglandins, leukotrienes) inappropriately and excessively. Unlike mastocytosis, mast cell numbers are usually normal; the problem is their behaviour. MCAS can affect almost every organ system, producing a wide variety of symptoms.

Common Symptoms

Skin: Flushing, urticaria (hives), dermatographism, itching, angioedema
GI: Nausea, vomiting, cramping, diarrhoea, bloating, reflux
Respiratory: Wheeze, throat tightening, nasal congestion
Neuro/other: Brain fog, fatigue, headaches, palpitations, near-syncope

Common Triggers

  • Foods (histamine-rich: aged cheese, fermented foods, alcohol, shellfish)
  • Medications (NSAIDs, opiates, contrast dye, certain antibiotics)
  • Temperature extremes (heat, cold)
  • Physical exertion, friction, pressure
  • Stress (physical or emotional), infection
  • Fragrances, chemicals, environmental exposures

Diagnostic Criteria

All three required: (1) Recurrent symptoms consistent with mast cell mediator release affecting ≥2 organ systems; (2) Response to anti-mediator therapy (antihistamines, cromoglicate); (3) Elevated tryptase during a reaction (≥20% + 2 ng/mL above baseline) or other positive mast cell mediator test.

⚠️ Anaphylaxis / Severe Reaction — Tell A&E:
• I have MCAS. My reactions are mast cell driven — standard triggers may not apply.
• I carry an adrenaline auto-injector (EpiPen). Location: [see label on this passport].
• Medications that worsen my condition: NSAIDs, opiates (check my medication list).
• Please check tryptase within 1–2 hours of reaction onset if possible.
• My specialist: see Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Management

Diagnosis Date
POTS Subtype
Tilt Table Test Result
Diagnosing Centre
Specialist
Current Medications
Daily Fluid Target
Salt Supplementation
Compression Garments
✓ Saved

📈 Vitals Log (Lying vs Standing)

Record lying and standing heart rate and BP. A rise of ≥30 bpm on standing is the key diagnostic marker.

DateTimeHR LyingHR StandingHR RiseBP LyingBP StandingSymptoms
✓ Saved

💡 POTS / Dysautonomia — Information Hub

What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia — dysfunction of the autonomic nervous system. It is defined by a sustained heart rate rise of ≥30 bpm (≥40 bpm in those aged 12–19) within 10 minutes of standing, in the absence of orthostatic hypotension. It predominantly affects women of childbearing age and is often associated with conditions such as hEDS, MCAS, and long COVID.

POTS Subtypes

Neuropathic: Peripheral autonomic neuropathy causing blood pooling in legs on standing.
Hyperadrenergic: Excess noradrenaline release — may cause hypertension on standing.
Hypovolaemic: Low blood / plasma volume. Responds to fluid and salt loading.

Management Strategies

  • Fluids: 2–3 litres water daily; avoid alcohol and caffeine
  • Salt: 6–10g/day dietary salt or supplementation (if no contraindication)
  • Compression: Waist-high compression garments (20–40mmHg)
  • Exercise: Recumbent / supine exercise (rowing, swimming, cycling) to build cardiac conditioning
  • Medications: Fludrocortisone, ivabradine, midodrine, propranolol (subtype dependent)
  • Positioning: Head-of-bed elevation 15–30°; rise slowly from lying
⚠️ Tell A&E / any clinician:
• I have POTS. My heart rate rises significantly on standing — this is expected for me.
• Please do not assume tachycardia in lying position means the same risk profile as in a standing patient.
• I need IV fluid cautiously — large boluses can worsen symptoms in hyperadrenergic subtype.
• Medications that may worsen my condition: diuretics (without medical review), vasodilators.
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Medication

Diagnosis Date
Epilepsy Type
Epilepsy Syndrome
EEG Result
Brain MRI Result
Photosensitive
Current AEDs
Rescue Medication
Seizure-Free Duration
Neurologist
✓ Saved

📋 Seizure Diary

DateTimeDurationTypeTriggerRecovery TimeInjuryRescue Med UsedA&E
✓ Saved

💡 Epilepsy — Information Hub

What is Epilepsy?

Epilepsy is a neurological condition characterised by a tendency to have recurrent, unprovoked seizures caused by abnormal electrical activity in the brain. It affects approximately 600,000 people in the UK. Seizures vary widely — from brief blank spells to full tonic-clonic convulsions. Most people with epilepsy can live normal lives with effective medication.

Seizure Types

Focal aware: Person remains conscious; may have unusual sensations, movements, or emotions.
Focal impaired awareness: Consciousness affected; may appear confused, make automatisms.
Tonic-clonic: Full body stiffening then rhythmic jerking; most recognised type.
Absence: Brief blank stare; common in children. Often missed.
Myoclonic: Sudden brief jerks, often on waking. Common in JME.

Common Triggers

  • Sleep deprivation — most common trigger
  • Missed or late antiepileptic medication
  • Alcohol (especially withdrawal)
  • Stress and illness / fever
  • Photosensitivity (in ~5% of people with epilepsy)
  • Hormonal changes (catamenial epilepsy)

UK Driving Rules

For a standard car licence (Group 1): must be seizure-free for 12 months OR if seizures only occur in sleep for 12+ months. You must notify the DVLA. HGV / bus licence requires 10 years seizure-free off medication.

⚠️ Seizure First Aid — Tell Bystanders / A&E:
• Do NOT restrain me. Do NOT put anything in my mouth.
• Time the seizure. If tonic-clonic lasts >5 minutes → call 999 immediately.
• After convulsion: place me in recovery position, stay with me until I am fully alert.
• My rescue medication: [see below — buccal midazolam / rectal diazepam].
• My neurologist is listed in Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Treatment

Diagnosis Date
Diagnosing Hospital
Rheumatologist
ANA
Anti-dsDNA
Anti-Sm
Antiphospholipid Antibodies
Complement (C3/C4)
Current DMARDs
On Prednisolone
Lupus Nephritis History
✓ Saved

🫀 Organ Involvement Status

Kidneys
Skin
Joints
Heart
Lungs
Nervous System
✓ Saved

📋 Flare Log

DateDurationMain SymptomsSeverityTrigger (if known)Treatment ChangeHospitalised
✓ Saved

💡 Lupus (SLE) — Information Hub

What is Systemic Lupus Erythematosus?

SLE (Lupus) is a chronic systemic autoimmune disease in which the immune system attacks healthy tissue. It affects approximately 50,000 people in the UK and is nine times more common in women. The condition is characterised by periods of flare and remission. Almost any organ can be affected, making lupus one of the most complex conditions to manage.

Key Features

  • Butterfly (malar) rash across cheeks and nose
  • Photosensitivity — skin reactions to sunlight
  • Joint pain and swelling (arthralgia / arthritis)
  • Fatigue — often severe and debilitating
  • Mouth ulcers, hair loss, serositis (pleuritis, pericarditis)
  • Lupus nephritis — kidney inflammation in 40–60% of patients
  • Neuropsychiatric lupus — headaches, seizures, cognitive changes

Key Antibodies in SLE

  • ANA — positive in >95% of SLE patients (not specific)
  • Anti-dsDNA — highly specific; titre correlates with disease activity
  • Anti-Sm — highly specific for SLE
  • Antiphospholipid antibodies — risk of clotting / pregnancy loss
  • C3, C4 complement — low levels indicate active disease

Flare Triggers

UV light, infection, stress, pregnancy, certain medications (sulfonamides, hydralazine). Hydroxychloroquine reduces flare frequency and protects against organ damage.

⚠️ Tell A&E / any clinician:
• I have Systemic Lupus Erythematosus (SLE). Fever in lupus may be infection OR flare — both need urgent assessment.
• I am on immunosuppressants — I am at increased infection risk. Please screen for infection before assuming flare.
• Lupus nephritis: check urine protein:creatinine ratio and renal function if I have new oedema or elevated BP.
• Steroid sick day rules apply if I am on prednisolone — double my dose during illness.
• My rheumatologist: see Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Treatment

PID Type / Diagnosis
Diagnosis Date
Diagnosing Centre
Immunologist
IgG at Diagnosis
Ig Replacement Route
Ig Product / Brand
Dose & Frequency
Prophylactic Antibiotics
Next Infusion Date
✓ Saved

💉 Immunoglobulin Infusion Log

DatePre-infusion IgG (g/L)Dose GivenRouteSite / HospitalReactionsNext Due
✓ Saved

🦠 Significant Infection Log

DateSite / TypeOrganism (if known)IV AntibioticsHospitalisedDuration
✓ Saved

💡 Primary Immunodeficiency — Information Hub

What is Primary Immunodeficiency?

Primary Immunodeficiency (PID) is a group of over 400 rare, inherited conditions in which the immune system is absent, reduced, or dysfunctional from birth. Unlike secondary immunodeficiency (caused by medication or disease), PIDs are genetic. They range from mild conditions (IgA deficiency) to life-threatening (SCID). The Immunodeficiency UK foundation estimates approximately 1 in 500 people in the UK has a significant PID.

Common PID Types

  • CVID (Common Variable Immunodeficiency) — most common symptomatic PID; low immunoglobulins, poor vaccine response
  • XLA (X-linked Agammaglobulinaemia) — absent B cells; severe bacterial infections from infancy; males only
  • IgA deficiency — most common PID; often mild; risk of recurrent respiratory/GI infections
  • SCID (Severe Combined Immunodeficiency) — absent T and B cells; life-threatening without bone marrow transplant
  • CGD (Chronic Granulomatous Disease) — phagocyte dysfunction; recurrent fungal and bacterial infections

Jeffrey Modell 10 Warning Signs (in adults)

  • 4+ new ear infections in one year
  • 2+ serious sinus infections in one year
  • 2+ months on antibiotics with little improvement
  • 2+ pneumonias in one year
  • Failure of an infant to gain weight or grow normally
  • Recurrent deep skin or organ abscesses
  • Persistent thrush or fungal infection
  • Need for IV antibiotics to clear infections
  • 2+ deep-seated infections including septicaemia
  • A family history of PID
⚠️ Tell A&E / any clinician — URGENT:
• I have Primary Immunodeficiency. ANY fever or signs of infection must be treated as an emergency.
• I cannot fight infection normally — even common bacteria can cause serious illness rapidly.
• I must NOT receive live vaccines (MMR, yellow fever, oral polio, BCG, shingles live).
• I am on Immunoglobulin replacement therapy — see dosing details below.
• Contact my immunologist immediately: see Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Treatment

Vasculitis Type
ANCA Result
Diagnosis Date
Diagnosing Centre
Specialist
Organs Involved
Current Immunosuppression
On Prednisolone
Current Disease Status
✓ Saved

🔬 Bloods Monitoring Log

DateCRPESRANCA TitreCreatinineeGFRUrine PCRNotes
✓ Saved

📋 Relapse Log

DateOrgan System AffectedSymptomsTreatment EscalationHospitalised
✓ Saved

💡 Vasculitis — Information Hub

What is Vasculitis?

Vasculitis is inflammation of blood vessel walls. It can affect arteries, veins, or capillaries of any size anywhere in the body, causing the vessel walls to thicken, weaken, narrow, or scar. This can restrict or cut off blood flow to vital organs. Vasculitis is rare — most types affect fewer than 1 in 20,000 people.

Types of Vasculitis

TypeFull NameVessels AffectedANCA
GPAGranulomatosis with Polyangiitis (Wegener's)SmallPR3-ANCA positive (~90%)
MPAMicroscopic PolyangiitisSmallMPO-ANCA positive (~60%)
EGPAEosinophilic GPA (Churg-Strauss)SmallMPO-ANCA (~40%)
GCAGiant Cell Arteritis (Temporal Arteritis)LargeANCA negative
TakayasuTakayasu ArteritisLargeANCA negative
IgAIgA Vasculitis (Henoch-Schönlein Purpura)SmallANCA negative
⚠️ Tell A&E / any clinician:
• I have vasculitis — an autoimmune condition affecting blood vessels. I am on immunosuppressants.
• Danger signs of vasculitis relapse: haemoptysis (coughing blood), rapidly worsening kidney function, visual loss (GCA), new purpuric rash.
• Pulmonary haemorrhage and rapidly progressive glomerulonephritis are medical emergencies — please call my vasculitis team immediately.
• Fever in an immunosuppressed patient requires urgent sepsis screen before assuming vasculitis flare.
• My specialist is listed in Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Specialist Team

Mitochondrial Syndrome
Gene / Mutation
Mutation Type
Diagnosis Date
Diagnosing Centre
Metabolic Physician
Supplements
Emergency Letter Carried
✓ Saved

🫀 Organ System Status

Brain / Neurological
Heart
Eyes
Hearing
Muscle
GI / Endocrine
✓ Saved

📋 Metabolic Crisis / Episode Log

DateTriggerSymptomsIV Treatment NeededHospital AdmissionDurationNotes
✓ Saved

💡 Mitochondrial Disease — Information Hub

What is Mitochondrial Disease?

Mitochondrial diseases are a group of conditions caused by dysfunction of the mitochondria — the structures inside cells that generate energy (ATP). They can be caused by mutations in mitochondrial DNA (mtDNA, inherited maternally) or nuclear DNA (nDNA, Mendelian inheritance). Because mitochondria are present in virtually every cell, the disease can affect any organ, but predominantly those with high energy requirements: brain, muscles, heart, eyes, and ears. They are collectively estimated to affect 1 in 4,300 people.

Common Syndromes

  • MELAS — Mitochondrial Encephalomyopathy, Lactic Acidosis, Stroke-like episodes
  • MERRF — Myoclonic Epilepsy with Ragged Red Fibres
  • NARP — Neuropathy, Ataxia, Retinitis Pigmentosa
  • Leigh Syndrome — severe early childhood; brainstem degeneration
  • Kearns-Sayre — CPEO, retinopathy, cardiac conduction defects
  • CPEO — Chronic Progressive External Ophthalmoplegia (drooping eyelids, eye movement disorder)

Metabolic Crisis — Critical Information

⚠️ EMERGENCY — Anaesthesia & Metabolic Crisis Protocol:
• I have mitochondrial disease. Fasting, illness, and surgery can trigger a life-threatening metabolic crisis.
• DO NOT FAST me without IV glucose cover. Maximum safe fast: 4 hours (with IV dextrose).
• Avoid: Metformin, statins (without specialist advice), sodium valproate (if mitochondrial disease suspected), propofol infusion syndrome risk — discuss with anaesthetist.
• During illness: I need IV 10% glucose immediately if I cannot take oral food or fluids.
• I carry an Emergency Care Plan — please request it. My metabolic specialist: see Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 Diagnosis & Treatment

HAE Type
C1-Inhibitor Level
C1-Inhibitor Function
C4 Level
Diagnosis Date
HAE Specialist / Centre
Long-Term Prophylaxis
Acute Treatment at Home
Hospital Emergency Plan
✓ Saved

📋 Acute Attack Log

Record each HAE attack. Laryngeal attacks are always a medical emergency.

DateLocationSeverityTrigger (if known)Treatment GivenTime to TreatmentA&EAdmission
✓ Saved

💡 Hereditary Angioedema (HAE) — Information Hub

What is Hereditary Angioedema?

HAE is a rare, life-threatening genetic condition caused by a deficiency or dysfunction of C1-inhibitor protein. Without adequate C1-inhibitor, the contact activation pathway is dysregulated, leading to excessive production of bradykinin, which causes swelling (angioedema) of subcutaneous and submucosal tissue. This is distinct from allergic/histamine-mediated angioedema — adrenaline and antihistamines are NOT effective for HAE attacks. HAE affects approximately 1 in 50,000 people.

HAE Types

Type I (~85%): Low C1-inhibitor level AND function. Autosomal dominant — SERPING1 gene.
Type II (~15%): Normal or elevated C1-inhibitor level but dysfunctional. Same gene.
Type III (HAEnC1-INH): Normal C1-inhibitor. Often oestrogen-sensitive. F12 or other gene mutations.

Attack Sites & Triggers

  • Abdomen (~50%): Severe colicky abdominal pain, vomiting — often misdiagnosed as acute abdomen
  • Skin / limbs: Swelling without itch (non-urticarial)
  • Face / tongue / larynx — LIFE-THREATENING: Airway obstruction risk
  • Triggers: Emotional/physical stress, trauma (including dental/surgical), oestrogen (OCP, HRT, pregnancy), ACE inhibitors (absolute contraindication)
✅ Acute HAE Treatment (effective):
• C1-inhibitor concentrate (Berinert, Cinryze) — IV
• Icatibant (Firazyr) — subcutaneous bradykinin B2 receptor antagonist
• Tranexamic acid — if specific treatments unavailable
• Fresh Frozen Plasma — as last resort
⚠️ CRITICAL — Tell A&E:
• I have Hereditary Angioedema (HAE). This is NOT allergic angioedema.
• DO NOT give adrenaline, antihistamines, or steroids as primary treatment — they are NOT effective for HAE.
• If I have laryngeal swelling — this is a LIFE-THREATENING EMERGENCY. Secure the airway and contact my HAE centre immediately.
• My acute treatment: C1-inhibitor concentrate / Icatibant — location: [see medication list].
• My HAE specialist: see Contact Directory (Section 2).
🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My EDS Record

✓ Saved

💡 EDS — Ehlers-Danlos Syndrome — Information Hub

What is EDS?

Ehlers-Danlos Syndrome is a group of connective tissue disorders caused by defects in collagen structure or production. There are 13 subtypes, ranging from hypermobile EDS (hEDS — no confirmed gene) to vascular EDS (vEDS — COL3A1 mutation with serious life-threatening complications). EDS affects skin, joints, blood vessels, and internal organs.

⚠️ vEDS — Vascular EDS Warning
vEDS (COL3A1 mutation) carries a risk of spontaneous aortic or arterial rupture, bowel perforation, and uterine rupture in pregnancy. Patients with vEDS must be managed in specialist centres. Any sudden severe pain in a vEDS patient is a potential emergency.

The Beighton Score

A 9-point scale measuring joint hypermobility: little finger extension, thumb to wrist, elbow hyperextension, knee hyperextension, and palms flat on floor with straight legs. A score of ≥5/9 suggests generalised hypermobility in adults.

The EDS / POTS / MCAS Trifecta

Many hEDS patients also have POTS (Postural Orthostatic Tachycardia Syndrome) and/or MCAS (Mast Cell Activation Syndrome). This triad is increasingly recognised and requires a multi-system approach to management.

Management

  • Physiotherapy — joint stabilisation, strengthening
  • Pain management — neuropathic agents, low-dose naltrexone
  • Joint protection — splints, orthotics, pacing
  • No specific drug treatment for most subtypes
  • Annual cardiac / vascular monitoring for vEDS

Ehlers-Danlos Society: ehlers-danlos.com

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Marfan Syndrome Record

✓ Saved

💡 Marfan Syndrome — Information Hub

What is Marfan Syndrome?

Marfan syndrome is caused by mutations in the FBN1 gene (fibrillin-1), affecting connective tissue throughout the body. It affects approximately 1 in 5,000 people. Features include tall stature, long limbs, lens dislocation, and most critically, aortic root dilation which can lead to aortic dissection.

Ghent Criteria

Diagnosis is based on the revised Ghent criteria (2010), combining aortic root dilation, lens dislocation, FBN1 mutation, and systemic features scored across multiple body systems.

⚠️ Aortic Dissection — Emergency
A tall or thin patient presenting with sudden severe chest or back pain — especially tearing or ripping in character — must be assessed for aortic dissection. Immediate CT aortogram required. Do not delay for ECG or troponin results. This is a life-threatening emergency.

Eye Complications

Ectopia lentis (lens dislocation) occurs in ~60% of patients. Annual ophthalmology review recommended. Myopia is common.

Orthopaedic Features

  • Scoliosis — regular spinal monitoring
  • Pectus excavatum / carinatum
  • Dural ectasia (lower back pain)
  • Flat feet, joint laxity

Marfan Trust: marfantrust.org

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Sjögren's Syndrome Record

✓ Saved

💡 Sjögren's Syndrome — Information Hub

What is Sjögren's Syndrome?

Sjögren's syndrome is a systemic autoimmune condition in which the immune system attacks the exocrine glands — primarily salivary and tear glands — causing dry eyes and dry mouth. It affects approximately 1 in 100 people, predominantly women.

Primary vs Secondary Sjögren's

Primary Sjögren's occurs alone. Secondary Sjögren's occurs alongside another autoimmune condition such as rheumatoid arthritis, lupus, or systemic sclerosis.

Diagnosis

  • Anti-SSA/Ro and Anti-SSB/La antibodies (positive in ~70–80%)
  • Minor salivary gland lip biopsy (focal lymphocytic sialadenitis)
  • Schirmer's test (tear production)
  • ESSDAI score for systemic activity

Beyond Dryness

Sjögren's frequently causes profound fatigue, joint pain, peripheral neuropathy, lung involvement, and kidney (tubular acidosis) problems. These systemic features can be more disabling than the dryness itself.

Lymphoma Risk

Patients with primary Sjögren's have a small but real increased risk of non-Hodgkin's B-cell lymphoma (approximately 5–10× the general population risk). Annual review and monitoring for swollen lymph nodes, parotid enlargement, and new fatigue is important.

British Sjögren's Syndrome Association: bssa.uk.net

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My APS Record

✓ Saved

💡 Antiphospholipid Syndrome (APS / Hughes Syndrome) — Information Hub

What is APS?

Antiphospholipid syndrome is an autoimmune thrombophilia — the immune system produces antiphospholipid antibodies that cause an increased tendency to form blood clots in both arteries and veins, and can cause pregnancy loss. It can occur alone (primary APS) or alongside lupus or other autoimmune conditions (secondary APS).

Diagnostic Criteria

Diagnosis requires at least one clinical criterion (thrombosis or pregnancy morbidity) AND at least one positive laboratory test on two separate occasions at least 12 weeks apart: lupus anticoagulant, anticardiolipin antibodies (IgG/IgM), or anti-beta-2 glycoprotein I (IgG/IgM).

⚠️ DOACs in Triple-Positive APS — Critical Warning
For patients who are triple positive (lupus anticoagulant + anticardiolipin + anti-beta-2 GPI), direct oral anticoagulants (DOACs — rivaroxaban, apixaban) are not recommended. The RAPS trial demonstrated higher rates of recurrent thrombosis with rivaroxaban compared to warfarin in this group. Warfarin remains the anticoagulant of choice for triple-positive APS.

Obstetric APS

Women with obstetric APS (recurrent miscarriage, stillbirth, placental insufficiency) are treated in pregnancy with low molecular weight heparin (LMWH) + low-dose aspirin, which significantly improves live birth rates.

APS Foundation: aps-foundation.org

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Scleroderma / Systemic Sclerosis Record

✓ Saved

💡 Scleroderma / Systemic Sclerosis — Information Hub

What is Systemic Sclerosis?

Systemic sclerosis (SSc) is a rare autoimmune connective tissue disease characterised by fibrosis of the skin and internal organs, vasculopathy, and immune dysregulation. It affects approximately 1 in 10,000 people, predominantly women.

Limited vs Diffuse SSc

Limited Cutaneous SSc
Skin involvement limited to hands, face, forearms. Anti-centromere antibodies typical. CREST features. PAH risk after years. Slower progression.
Diffuse Cutaneous SSc
Rapid skin thickening, proximal limb and trunk involvement. Anti-Scl-70 = ILD risk. Anti-RNA Pol III = renal crisis risk. Faster organ involvement.
⚠️ Scleroderma Renal Crisis
Sudden severe hypertension with declining kidney function in a scleroderma patient is a medical emergency. Scleroderma renal crisis requires urgent treatment with ACE inhibitors (captopril). Risk is highest in diffuse SSc with anti-RNA Pol III antibodies, especially early in disease.

Raynaud's Phenomenon

Almost universal in SSc. Management: hand warmers, nifedipine, sildenafil for severe cases, IV prostacyclin for digital ulcers.

SRUK (Scleroderma & Raynaud's UK): sruk.co.uk

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Sarcoidosis Record

✓ Saved

💡 Sarcoidosis — Information Hub

What is Sarcoidosis?

Sarcoidosis is a multi-system granulomatous inflammatory disease of unknown cause. Tiny collections of inflammatory cells (granulomas) form in affected organs — most commonly the lungs and lymph nodes, but potentially any organ. It is more common in Black African/Caribbean patients and typically presents in adults aged 20–40.

Diagnosis

  • Tissue biopsy showing non-caseating granulomas
  • CT scan of chest (mediastinal lymphadenopathy, nodules)
  • PET scan for active multisystem disease
  • Serum ACE — elevated in ~60% (not diagnostic alone)
  • Bronchoalveolar lavage

Spontaneous Remission

Many patients (especially with Löfgren's syndrome — bilateral hilar lymphadenopathy, erythema nodosum, ankle arthritis) experience spontaneous remission within 2 years. Others develop chronic disease requiring long-term immunosuppression.

⚠️ Cardiac Sarcoidosis
Cardiac sarcoidosis can cause heart block, ventricular arrhythmias, and sudden cardiac death. It requires cardiology involvement, ambulatory ECG monitoring, and in some cases an ICD. Symptoms: palpitations, presyncope, syncope, breathlessness.

Sarcoidosis UK: sarcoidosisuk.org

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Myasthenia Gravis Record

✓ Saved

💡 Myasthenia Gravis — Information Hub

What is Myasthenia Gravis?

Myasthenia gravis (MG) is an autoimmune neuromuscular junction disorder. Antibodies — most commonly against acetylcholine receptors (AChR) — block neuromuscular transmission, causing fluctuating muscle weakness that worsens with activity and improves with rest. It affects approximately 1 in 5,000 people.

⚠️ Myasthenic Crisis — Emergency
Myasthenic crisis is respiratory failure from MG weakness — a life-threatening emergency requiring immediate ICU admission, IV immunoglobulin (IVIg) or plasmapheresis, and ventilatory support. Precipitated by: infection, surgery, certain drugs, missed medications.
⚠️ Drug Contraindications in MG — Critical
Many common medications can worsen MG or precipitate crisis. This is critically important during hospital admissions. Always inform prescribers and anaesthetists of MG diagnosis. Key unsafe classes include aminoglycosides, fluoroquinolones, macrolides, beta-blockers, and magnesium. See the data record below for a full list.

Thymectomy

Thymectomy (surgical removal of the thymus) improves outcomes in AChR-positive generalised MG, even in patients without thymoma. The MGTX trial confirmed benefit. Recommended for most patients under 65 with generalised AChR+ MG.

Myaware: myaware.org

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Hereditary Haemochromatosis Record

✓ Saved

💡 Hereditary Haemochromatosis — Information Hub

What is Hereditary Haemochromatosis?

Hereditary haemochromatosis (HH) is a genetic disorder causing excessive iron absorption and accumulation in the body — most commonly due to mutations in the HFE gene (particularly C282Y homozygosity). It affects approximately 1 in 200 people of Northern European ancestry, making it one of the most common genetic conditions in this population.

Symptoms

Iron deposition causes: fatigue, joint pain (especially knuckles — "iron fist"), bronze skin pigmentation, liver disease (fibrosis/cirrhosis), diabetes (iron damages pancreas), cardiac disease, hypothyroidism, impotence/infertility, and abdominal pain. Symptoms often appear in middle age — women are partially protected by menstruation.

Diagnosis

  • Transferrin saturation >45% — key screening test
  • Serum ferritin — elevated (can be very high)
  • HFE gene testing (C282Y, H63D)
  • Liver biopsy if cirrhosis suspected
  • MRI liver iron quantification

Treatment — Venesection

Venesection (therapeutic phlebotomy — removing blood) is simple, safe, and highly effective if started before organ damage occurs. Weekly venesection in the induction phase, then maintenance every 2–4 months to keep ferritin <50 µg/L. Life expectancy is normal with early treatment.

Family Screening

First-degree relatives (parents, siblings, children) should be tested — HH is autosomal recessive and family members may be at risk without knowing it.

Haemochromatosis UK: haemochromatosis.org.uk

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Alpha-1 Antitrypsin Deficiency Record

✓ Saved

💡 Alpha-1 Antitrypsin Deficiency — Information Hub

What is Alpha-1 Antitrypsin Deficiency?

Alpha-1 antitrypsin deficiency (A1ATD) is a genetic condition causing a deficiency of the alpha-1 antitrypsin (A1AT) protein, a protease inhibitor that protects the lungs from enzyme damage. Without sufficient A1AT, neutrophil elastase destroys lung tissue, causing emphysema. Abnormal A1AT protein also accumulates in the liver, causing liver disease. The most severe form is the ZZ genotype.

⚠️ Smoking is Catastrophic in A1ATD
Smoking dramatically accelerates lung destruction in A1ATD — ZZ individuals who smoke can develop severe emphysema by their 30s or 40s. Even passive smoke exposure is harmful. Smoking cessation is the single most important intervention and must be strongly supported.

ZZ Genotype — Lung Disease

ZZ is the most severe genotype. Non-smokers with ZZ can develop emphysema from their 40s–50s. MZ carriers have mildly increased lung risk. SZ intermediate risk.

Liver Disease

Abnormal Z-A1AT protein accumulates in liver cells, causing neonatal jaundice, childhood liver disease, cirrhosis in adults, and increased risk of hepatocellular carcinoma. All ZZ patients should have hepatology review.

Augmentation Therapy

Respreeza (human A1AT) — weekly IV infusions — is NHS funded for patients with ZZ or SZ genotype with significant lung disease (FEV1 25–80% predicted). Slows disease progression. Does not help liver disease.

Alpha-1 UK Support Group: alpha1.org.uk

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Porphyria Record

✓ Saved

💡 Porphyria (Acute Intermittent) — Information Hub

What is Porphyria?

The acute porphyrias are a group of rare inherited disorders caused by enzyme deficiencies in the haem biosynthesis pathway. In acute attacks, toxic porphyrin precursors (ALA and PBG) accumulate, causing severe symptoms. Acute intermittent porphyria (AIP) is the most common form in the UK.

⚠️ Acute Porphyria Attack — Medical Emergency
An acute attack presents with severe abdominal pain, vomiting, hyponatraemia, motor neuropathy, seizures, psychiatric symptoms, and potentially respiratory paralysis. It is frequently misdiagnosed. IV haem arginate (Normosang) must be given early — delay worsens neuropathy. IV glucose loading helps. Urine turns dark/port-wine coloured.
⚠️ Drug Safety — Critical for All Prescribers
Many common medications are unsafe in acute porphyria and can precipitate a life-threatening attack. This is one of the most important clinical facts about porphyria. Every prescriber — including A&E, anaesthetists, and ward doctors — must check before prescribing. Use the European Porphyria Network drug database: drugs-porphyria.eu. Safe alternatives exist for almost all situations.

Common Triggers

  • Fasting / crash dieting / low carbohydrate intake
  • Alcohol
  • Hormonal changes (menstrual cycle, OCP, puberty)
  • Infections / physical stress
  • Many medications (see drug checker)

Givosiran (Givlaari)

Givosiran is a monthly subcutaneous siRNA therapy that reduces attack frequency. NHS funded for adults with recurrent attacks of acute hepatic porphyria. Specialist initiation only.

British Porphyria Association: porphyria.org.uk | Drug checker: drugs-porphyria.eu

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Neurofibromatosis Record

✓ Saved

💡 Neurofibromatosis (NF1 / NF2) — Information Hub

What is NF1?

Neurofibromatosis type 1 (NF1) is caused by mutations in the NF1 gene (neurofibromin tumour suppressor). It affects approximately 1 in 3,000 people — making it the most common single-gene neurological condition in the world. It is autosomal dominant, with 50% new mutations. Neurofibromin regulates cell growth; its loss leads to benign and occasionally malignant tumours of nerve tissue.

Features of NF1

  • Café-au-lait spots (≥6 spots >5mm in prepubertal / >15mm in postpubertal)
  • Cutaneous and subcutaneous neurofibromas
  • Lisch nodules (iris hamartomas)
  • Plexiform neurofibromas (complex, often painful)
  • Optic pathway gliomas (childhood)
  • Learning difficulties and ADHD (common)
  • Hypertension — screen for phaeochromocytoma and renal artery stenosis

MPNST — Malignant Peripheral Nerve Sheath Tumour

MPNSTs are the most serious complication of NF1 — rare but life-threatening. Rapid growth or change in a neurofibroma, or new unexplained pain, should prompt urgent specialist review.

NF2 — Distinct Condition

NF2 (NF2 gene — merlin protein) causes bilateral vestibular schwannomas (acoustic neuromas) causing progressive hearing loss, tinnitus, and balance problems. Also meningiomas and spinal schwannomas. Managed in specialist NF2 centres.

Nerve Tumours UK: nervetumours.org.uk | NFA UK: nfauk.org

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

📋 My Myositis Record

✓ Saved

💡 Myositis (Polymyositis / Dermatomyositis) — Information Hub

What is Myositis?

The inflammatory myopathies are a group of autoimmune conditions causing muscle inflammation and weakness. Main subtypes include dermatomyositis (DM), polymyositis (PM), inclusion body myositis (IBM), anti-synthetase syndrome, and immune-mediated necrotising myopathy (IMNM). They are rare — combined prevalence approximately 1 in 100,000.

⚠️ Anti-MDA5 — Rapidly Progressive ILD Risk
Patients with anti-MDA5 antibodies have a significantly elevated risk of rapidly progressive interstitial lung disease (RP-ILD), which can be fatal within weeks. Early aggressive immunosuppression is critical. This subtype requires urgent respiratory and rheumatology co-management.

Antibody Subtypes and Clinical Associations

Antibody Key Association
Anti-Jo-1 (and other anti-synthetase)Anti-synthetase syndrome — ILD, arthritis, mechanic's hands, Raynaud's
Anti-Mi-2Classic DM features, good treatment response
Anti-MDA5Rapidly progressive ILD — HIGH RISK
Anti-TIF1γMalignancy-associated DM
Anti-NXP2Calcinosis, juvenile DM, malignancy risk (adults)
Anti-SRP / Anti-HMGCRIMNM — severe necrotising myopathy (statin-associated HMGCR)

Malignancy Screening in Dermatomyositis

Adult-onset dermatomyositis has a well-established association with underlying malignancy (especially anti-TIF1γ positive). Comprehensive malignancy screening is mandatory at diagnosis and at 3–6 month intervals for 2–3 years.

Treatment

High-dose prednisolone + steroid-sparing agents (methotrexate, azathioprine, mycophenolate). Severe/refractory: IVIg, rituximab. IBM does not respond well to immunosuppression.

Myositis UK: myositis.org.uk

🧠
Mental Health & Crisis Support
Living with a rare condition takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts, your personal plan, and community resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧠 My Multiple System Atrophy (MSA) Record

✓ Saved

📋 Function & Autonomic Log

Date BP Lying BP Standing Symptoms Falls (last month) Notes
✓ Saved

💡 Multiple System Atrophy — Information Hub

What is Multiple System Atrophy (MSA)?

MSA is a rare, rapidly progressive neurodegenerative condition affecting the autonomic nervous system, movement, and balance. It is caused by the abnormal accumulation of alpha-synuclein protein in brain cells. There are two main subtypes: MSA-P (Parkinsonian features predominate — stiffness, slow movement, tremor) and MSA-C (Cerebellar features predominate — balance and coordination problems). Average survival from symptom onset is 6–10 years.

⚠️ There is currently no disease-modifying treatment for MSA.
Management focuses on symptom control — particularly autonomic symptoms (low blood pressure on standing, bladder problems), movement, and swallowing. Early advance care planning is strongly recommended.

Key Symptoms to Know

  • Orthostatic hypotension — significant drop in blood pressure on standing; causes falls and dizziness
  • Urinary dysfunction — urgency, frequency, incomplete emptying, retention
  • Swallowing difficulties — aspiration risk; always tell clinicians
  • Respiratory stridor — noisy breathing, especially at night; can be life-threatening
  • Falls — extremely high fall risk; physiotherapy and home assessment essential

Important for Clinicians

MSA can be confused with Parkinson's disease but does not respond well to levodopa. Certain medications that lower blood pressure can be dangerous. Always inform anaesthetists before any procedure — autonomic instability makes anaesthesia high risk.

MSA Trust: msatrust.org.uk  |  Rare Diseases UK: rarediseasesuk.org

🧠
Mental Health & Crisis Support
A progressive diagnosis takes an enormous psychological toll. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

💪 My Muscular Dystrophy Record

✓ Saved

📋 Cardiac & Respiratory Monitoring

Date FVC % Ejection Fraction % ECG Result Sputum / Chest Issues Notes
✓ Saved

💡 Muscular Dystrophy — Information Hub

What is Muscular Dystrophy?

The muscular dystrophies are a group of inherited conditions caused by mutations in genes responsible for muscle structure and function. All cause progressive muscle weakness, but the rate of progression, muscles affected, and severity vary greatly by type. Duchenne MD (DMD) is the most common and severe form, primarily affecting boys. Myotonic dystrophy is the most common adult form.

⚠️ Cardiac monitoring is mandatory — even if you feel well
Cardiomyopathy can develop silently in DMD, Becker MD, Emery-Dreifuss, and myotonic dystrophy. Annual echocardiogram is recommended even without symptoms. ACE inhibitors and beta-blockers are cardioprotective and should be started early.
⚠️ Anaesthesia Risk
Muscular dystrophy patients are at risk of serious complications under general anaesthesia including rhabdomyolysis and cardiac arrest. Always inform the anaesthetist of your diagnosis before any procedure. Suxamethonium (succinylcholine) is contraindicated.

Respiratory Signs to Watch

  • Morning headaches, daytime sleepiness — may indicate nocturnal hypoventilation
  • Frequent chest infections
  • Difficulty clearing secretions / coughing
  • FVC below 50% — strongly consider nocturnal NIV

Muscular Dystrophy UK: musculardystrophyuk.org  |  MDUK NMD Centres of Excellence: specialist NHS care for all MD types

🧠
Mental Health & Crisis Support
Living with a progressive condition affects mental health profoundly. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🧬 My Huntington's Disease Record

✓ Saved

📋 Annual Review Log

Date Total Motor Score (TMS) Functional Capacity (1–13) Weight (kg) Clinician Notes
✓ Saved

💡 Huntington's Disease — Information Hub

What is Huntington's Disease?

Huntington's Disease (HD) is an inherited neurodegenerative condition caused by an abnormal expansion of the CAG repeat sequence in the HTT gene on chromosome 4. It causes progressive motor symptoms (chorea — involuntary movements, rigidity, difficulty walking), cognitive decline, and psychiatric symptoms. Symptoms typically begin between ages 30–50, though juvenile-onset HD can occur with very high CAG repeats (>60).

⚠️ 50% inheritance risk — genetic counselling is essential
Each child of a person with HD has a 50% chance of inheriting the mutated gene. Predictive genetic testing should only be done through a specialist genetics and counselling service — never through consumer DNA kits. The implications for the individual and their family are profound.

Psychiatric Symptoms Often Come First

Depression, anxiety, irritability, obsessive-compulsive behaviours, and psychosis can all precede motor symptoms by years. Psychiatric symptoms are often the most disabling aspect of HD and require specialist management. Please also complete the Depression, Anxiety & Mood section if relevant.

Research & Clinical Trials

HD research is advancing rapidly. The ENROLL-HD registry connects people affected by HD with clinical research. HD gene-silencing therapies are in active clinical trials. Speak to your neurologist about research opportunities.

Huntington's Disease Association: hda.org.uk  |  ENROLL-HD Registry: enroll-hd.org

🧠
Mental Health & Crisis Support
HD has a profound impact on mental health — for the person with HD and their family. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

❤️ My Kawasaki Disease — Cardiac Record

This section is for adults who had Kawasaki Disease as a child and need ongoing cardiac follow-up.

✓ Saved

📋 Echo & Cardiac Monitoring Log

Date LAD (Z-score / mm) RCA (Z-score / mm) LV Function Key Findings Cardiologist Notes
✓ Saved

💡 Kawasaki Disease — Information Hub

Why Do Adults Need Cardiac Follow-Up After Childhood Kawasaki Disease?

Kawasaki Disease (KD) is a systemic vasculitis (inflammation of blood vessels) that mainly affects children under 5. In most children it resolves completely — but in approximately 25% who do not receive timely treatment, it causes coronary artery aneurysms. These aneurysms can persist into adulthood and carry a lifelong risk of coronary thrombosis, stenosis, and myocardial infarction, sometimes decades later.

⚠️ Tell every A&E and cardiac team about your childhood Kawasaki Disease
If you develop chest pain, you may be having a heart attack related to a coronary aneurysm — even if you are young. Clinicians who don't know your history may not consider this diagnosis. Always carry documentation.

Aneurysm Classification & Risk

Category Z-score Risk
No aneurysm<2.5Low — routine follow-up
Small2.5–5Low-medium — antiplatelet therapy
Medium5–10Moderate — antiplatelet + close monitoring
Giant>10High — anticoagulation + intensive monitoring

Kawasaki Disease UK: kdsupport.org.uk  |  American Heart Association KD guidelines: aha-journals.org

🧠
Mental Health & Crisis Support
Managing a lifelong cardiac risk can be anxiety-provoking. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🦠 My Mastocytosis Record

⚠️ Anaesthesia Risk — Always Carry Your Emergency Card
Mastocytosis patients have an increased risk of severe allergic reactions (anaphylaxis) under general anaesthesia. Always inform your anaesthetist, surgeon, and dentist of your diagnosis before any procedure. Ask your specialist for a mastocytosis emergency card.
✓ Saved

📋 Tryptase & Bloods Monitoring

Date Serum Tryptase (ng/mL) Other Results Notes
✓ Saved

📋 Reaction Log

Date Trigger Symptoms Severity EpiPen Used A&E Attendance Notes
✓ Saved

💡 Mastocytosis — Information Hub

What is Mastocytosis?

Mastocytosis is a rare condition caused by the abnormal proliferation and accumulation of mast cells in the skin, bone marrow, liver, spleen, and gastrointestinal tract. Mast cells release histamine and other chemical mediators that cause symptoms ranging from flushing and hives to anaphylaxis. It is distinct from MCAS (Mast Cell Activation Syndrome), though they share some features.

Mastocytosis vs MCAS

Feature Mastocytosis MCAS
CauseToo many mast cells (KIT D816V mutation)Mast cells over-activate
TryptaseOften elevated (>20 ng/mL)Usually normal at baseline
Bone marrowMay show mast cell infiltrationNormal
Skin lesionsOften present (UP)Absent

Key Triggers to Avoid

Common triggers include: insect stings, certain medications (NSAIDs, codeine, contrast dye, some anaesthetic agents), alcohol, temperature extremes, physical exertion, emotional stress, and some foods. Keep a trigger diary and share it with all treating clinicians.

Mastocytosis UK: mastocytosisuk.org  |  The Mastocytosis Society (USA): tmsforacure.org

🧠
Mental Health & Crisis Support
The unpredictability of reactions and anaphylaxis risk takes a serious toll on mental health. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🌡️ My Behçet's Disease Record

✓ Saved

📋 Flare Log

Date Manifestation Severity Treatment Given Hospitalised Notes
✓ Saved

👁️ Eye Review Log

Date VA Right VA Left Uveitis Present Treatment Clinician
✓ Saved

💡 Behçet's Disease — Information Hub

What is Behçet's Disease?

Behçet's Disease (BD) is a rare, systemic vasculitis — inflammation of blood vessels throughout the body. It is characterised by recurrent oral ulcers, genital ulcers, eye inflammation (uveitis), and skin lesions. It can also affect the nervous system (neuro-Behçet's) and large blood vessels. Sometimes called the "Silk Road Disease" due to its higher prevalence along the ancient trade routes from the Middle East to East Asia. Prevalence in the UK is approximately 1 in 100,000.

👁️ Eye Emergency — Seek Urgent Ophthalmology if:
Red eye, floaters, blurred vision, eye pain, or any sudden vision change in a patient with Behçet's Disease could indicate uveitis flare. This is a medical emergency — untreated uveitis in Behçet's can cause permanent vision loss within days. Do not wait for a routine appointment. Go to A&E or an eye casualty department immediately.

International Study Group Criteria (ISG)

Diagnosis requires recurrent oral ulceration plus two of: genital ulceration, eye disease, skin lesions, or positive pathergy test. HLA-B51 is associated but not diagnostic.

Treatment Approach

Colchicine for mucocutaneous disease. Corticosteroids for acute flares. Immunosuppressants (azathioprine, ciclosporin) for eye disease and systemic involvement. Biologics (infliximab, adalimumab, apremilast) for refractory disease.

Behçet's UK: behcetsuk.org  |  NHS Behçet's Centres of Excellence: Birmingham, London, Liverpool

🧠
Mental Health & Crisis Support
Behçet's is unpredictable and often poorly understood. Our Mental Health & Crisis Support section has crisis contacts and resources.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🌟 My Down's Syndrome Record

✓ Saved

📋 Annual Health Check Log

Year TSH Weight (kg) Blood Pressure Hearing / Vision Result Notes
✓ Saved

💡 Down's Syndrome — Information Hub

What is Down's Syndrome?

Down's Syndrome (Trisomy 21) is the most common chromosomal condition, occurring in approximately 1 in 1,000 live births. It is caused by the presence of an extra copy of chromosome 21. People with Down's Syndrome have a wide range of abilities and lead fulfilling lives. With the right healthcare and support, life expectancy has increased significantly and is now typically 60 years or more.

⚠️ Higher Risk of Alzheimer's Dementia
People with Down's Syndrome have a significantly elevated risk of Alzheimer's Disease, typically developing symptoms 10–20 years earlier than the general population. By age 65, around 70% have dementia. Early cognitive baseline assessments are recommended from age 30. Changes in behaviour, memory, or skills should be assessed promptly.

NHS Annual Health Check — What to Expect

People with learning disabilities are entitled to an annual health check with their GP (also called a Health Action Plan review). This should include: thyroid function (TSH), weight, blood pressure, hearing assessment, vision check, medication review, and lifestyle discussion. Requesting this check is a legal right.

Ongoing Health Monitoring

  • Thyroid — hypothyroidism is much more common in Down's Syndrome; TSH should be checked annually
  • Hearing — regular audiological assessment; hearing aids if needed
  • Cardiac — if there is a history of congenital heart disease, ongoing cardiac follow-up may be needed
  • Coeliac disease — higher prevalence; test if GI symptoms develop
  • Sleep apnoea — common due to anatomical differences; consider referral for sleep study if suspected
  • Leukaemia — children with Down's Syndrome have a 10–20x higher risk of acute leukaemia; adults should report unexplained bruising, pallor, or fatigue

Down's Syndrome Association: downs-syndrome.org.uk  |  Alzheimer's Society DS research: alzheimers.org.uk

🧠
Mental Health & Crisis Support
Our Mental Health & Crisis Support section has crisis contacts and resources for both the person with Down's Syndrome and their family and carers.
🌐 Rare disease organisations, charities & patient communities: View Support Organisations ↓ | 🧠 Mental Health & Crisis Support

🌐 Rare Disease Organisations & Support

Living with a rare or complex condition can be isolating — many GPs have never seen your condition, diagnosis journeys average 4–5 years, and specialist services are often far away. These organisations exist specifically to help.

🔍 Finding Your Diagnosis / Condition Information
Orphanet
The world's largest rare disease database — over 6,000 conditions. Detailed disease summaries, prevalence data, specialist centres, and clinical guidelines. Use to find your nearest NHS specialist centre.
orpha.net
NORD — National Organization for Rare Disorders
US-based but internationally used. Plain-English disease summaries, treatment overviews, and clinical trial listings. Excellent starting point for newly diagnosed patients.
rarediseases.org
Rare Disease UK (RDUK)
UK patient alliance for rare diseases. Campaigns for better NHS services, earlier diagnosis, and access to treatments. Patient stories, policy work, and signposting to specialist services.
raredisease.org.uk
NHS Rare Diseases Framework
The UK government's 5-year plan for rare diseases — covering diagnosis, specialist services, and research. Useful for understanding your rights and what NHS services should be available.
england.nhs.uk/rare-diseases
🏥 NHS Specialist Services
NHS Highly Specialised Services
NHS England commissions specialist centres for the rarest conditions — often at a handful of hospitals nationally. Your GP can refer you to these centres. Finding the right specialist can transform care.
Genomics England / NHS Genomic Medicine Service
If your diagnosis is unclear, whole genome sequencing may be available via the NHS. Ask your specialist about a referral to your regional Genomic Medicine Centre.
genomicsengland.co.uk
European Reference Networks (ERNs)
Virtual networks of specialist centres across Europe sharing expertise on rare conditions. UK centres retain informal ERN relationships post-Brexit. Ask your specialist about cross-border expert consultation.
NIHR BioResource / Clinical Research
Many rare disease patients can contribute to research and gain access to emerging treatments via clinical trials. Ask your specialist about relevant studies. NIHR CRN can help find trials.
nihr.ac.uk
🤝 Patient Support & Community
Genetic Alliance UK
Alliance of over 180 patient organisations covering genetic, rare, and undiagnosed conditions. Can help connect you with a specific patient group for your condition.
geneticalliance.org.uk
Undiagnosed Children's Day / SWAN UK
For families of children (and adults) without a confirmed diagnosis — Syndromes Without A Name. Community support, advocacy, and research participation.
swanuk.org.uk
Contact (for families with disabled children)
Support for families of children with rare conditions — practical advice, benefits guidance, and family networking. Helpline: 0808 808 3555.
contact.org.uk
Rare Connect
International online communities for rare disease patients organised by condition. Connect with others worldwide who share your diagnosis.
rareconnect.org
💊 Accessing Treatments & Medications

Named Patient / Compassionate Use: If a treatment is not yet licensed in the UK, your specialist can apply for named patient supply directly from the manufacturer while NHS funding decisions are pending.

NICE Highly Specialised Technologies (HST): NICE evaluates treatments for ultra-rare conditions through a separate HST pathway. If your condition has a NICE HST appraisal, your specialist centre can prescribe the treatment on the NHS.

Individual Funding Requests (IFR): If a treatment is available but your ICB won't fund it, your clinician can submit an IFR to your Integrated Care Board making a clinical case for exceptional funding. Patient organisations can provide supporting evidence.

🫀 My Aneurysm Record

✓ Saved

📋 Imaging Surveillance Log

DateImaging TypeSize (mm)Change Since LastNotes
✓ Saved

💡 Aneurysm — Information Hub

What Is an Aneurysm?

An aneurysm is an abnormal bulge or ballooning in the wall of a blood vessel. It develops where the vessel wall is weakened. The most common types are abdominal aortic aneurysm (AAA) — in the large vessel carrying blood from the heart down the abdomen — and cerebral (brain) aneurysm — in arteries at the base of the brain.

Aortic Aneurysm (AAA / TAA)

  • Most AAAs are found incidentally on ultrasound or CT scanning — the NHS offers free AAA screening to men at age 65
  • Small aneurysms (<5.5 cm for AAA) are usually monitored with regular surveillance ultrasound
  • Larger aneurysms or those growing rapidly (>1 cm/year) are referred for repair
  • EVAR (endovascular aortic repair) — keyhole stent graft inserted via the groin — less invasive than open surgery
  • Open repair — major abdominal surgery; longer recovery but more durable long-term
  • Controlling blood pressure and stopping smoking significantly slow aneurysm growth

Cerebral (Brain) Aneurysm

  • Many cerebral aneurysms are unruptured and found incidentally on MRI/CT — they may never rupture
  • Small aneurysms in low-risk locations are often monitored rather than treated
  • Endovascular coiling — platinum coils inserted via a catheter to seal the aneurysm from inside
  • Surgical clipping — open brain surgery to place a metal clip at the aneurysm neck

🚨 When to Call 999 — Rupture Warning Signs

  • AAA rupture: Sudden severe tearing or ripping pain in the abdomen, back, or side — may radiate to the groin. Pale, sweating, collapse. Call 999 immediately.
  • Cerebral aneurysm rupture: Sudden onset of the worst headache of your life ("thunderclap headache"), stiff neck, sensitivity to light, nausea, vomiting, or loss of consciousness. Call 999 immediately.

Useful Resources

  • Brain Aneurysm Foundation — bafound.org
  • NHS AAA Screening Programme — nhs.uk/conditions/abdominal-aortic-aneurysm
  • Circulation Foundation — circulationfoundation.org.uk

🩺 My Appendicitis Record

✓ Saved

💡 Appendicitis — Information Hub

What Is Appendicitis?

Appendicitis is inflammation of the appendix — a small pouch attached to the large intestine in the lower right abdomen. It is one of the most common causes of acute abdominal pain requiring emergency surgery. If untreated, the appendix can burst (perforate), causing a serious infection called peritonitis.

Treatment Options

  • Laparoscopic appendicectomy — keyhole surgery via 3 small cuts; most common approach; faster recovery than open surgery
  • Open appendicectomy — used for perforated appendicitis, complex cases, or where laparoscopic approach is not possible
  • Antibiotics only (non-operative) — increasingly used for uncomplicated appendicitis; avoids surgery but ~20% need surgery within a year
  • Interval appendicectomy — surgery after a 6–8 week course of antibiotics to treat an appendix abscess first; reduces risk of surgery in an inflamed/infected field

Post-operative Adhesions

Scar tissue (adhesions) can form inside the abdomen after any surgery, including appendicectomy. Adhesions can cause intermittent abdominal pain and in some cases bowel obstruction. Signs include cramping pain, bloating, nausea, and inability to pass stool or wind. Most adhesions cause no problems; persistent symptoms should be assessed by a surgeon.

Stump Appendicitis

Rarely (<1 in 500 cases), a small remnant of the appendix left behind can become inflamed — this is called stump appendicitis. Symptoms are the same as original appendicitis. It can occur years after the original surgery and may be missed because patients and clinicians assume the appendix is gone.

🚨 When to Seek Urgent Help

  • Severe or worsening abdominal pain, especially in the right lower abdomen
  • High fever with abdominal pain
  • Rigid or board-like abdomen
  • Unable to keep fluids down
  • Signs of bowel obstruction: no bowel movements, no flatus, severe bloating

Useful Resources

  • NHS — Appendicitis — nhs.uk/conditions/appendicitis
  • Guts UK — guts.org.uk (digestive health charity)

☀️ My Xeroderma Pigmentosum (XP) Record

✓ Saved

📋 Skin Surveillance Log

DateFindingSite / LocationAction TakenFollow-up Date
✓ Saved

💡 Xeroderma Pigmentosum — Information Hub

What Is Xeroderma Pigmentosum (XP)?

XP is an extremely rare inherited condition (affecting approximately 1 in 1 million people in Europe) in which the body cannot repair DNA damage caused by ultraviolet (UV) light. Even tiny amounts of UV exposure from sunlight or certain artificial lights cause cumulative, irreparable DNA damage — leading to severe sunburn, premature skin ageing, and a dramatically elevated risk of skin cancer (1,000-fold above the general population).

Complementation Groups

XP is caused by mutations in one of eight genes involved in nucleotide excision repair (NER) — the DNA repair pathway that fixes UV damage. Each gene corresponds to a complementation group (XP-A through XP-G and XP-V). The group determines severity: XP-A carries the highest risk of neurological involvement; XP-C is the most common European form with predominantly skin involvement.

UV Protection — Essential Rules

  • Avoid all direct sunlight — UV passes through ordinary glass, light cloud, and some fabrics
  • Apply SPF 50+ broad-spectrum sunscreen to all exposed skin before any outdoor exposure, even brief trips
  • Wear UV-protective clothing (UPF 50+), gloves, wide-brimmed hat, and UV-blocking visor or goggles
  • Fit UV-blocking film to all home and car windows
  • Replace halogen and fluorescent bulbs with LED (LEDs emit negligible UV)
  • Check UV output of medical equipment — some phototherapy lamps and examination lights contain UV

Neurological Features

Groups XP-A, XP-B, XP-D, and XP-G may develop progressive neurological problems including hearing loss, intellectual regression, ataxia (balance problems), and spasticity. This is caused by UV-independent neuronal DNA damage accumulating over time. Regular neurological review is recommended for at-risk groups.

Useful Resources

  • XP Support Group (XPSG) — xpsupportgroup.org.uk — UK charity for XP families
  • Great Ormond Street Hospital XP Clinic — the UK's specialist centre for XP diagnosis and management
  • Rare Diseases UK — raredisease.org.uk

🟤 My Wilson's Disease Record

✓ Saved

📋 Copper Monitoring Log

DateSerum Copper (µmol/L)Ceruloplasmin (mg/dL)24hr Urine Copper (µg/24h)Notes
✓ Saved

💡 Wilson's Disease — Information Hub

What Is Wilson's Disease?

Wilson's disease is a rare inherited condition (approximately 1 in 30,000) in which the body cannot remove excess copper. Caused by mutations in the ATP7B gene, the liver loses its ability to excrete copper into bile. Copper accumulates first in the liver, then overflows into the bloodstream and deposits in the brain, eyes, kidneys, and other organs.

It most commonly presents in young people between ages 5 and 35. With early diagnosis and lifelong treatment, most patients live a normal life.

Kayser-Fleischer Rings

Copper deposits in the cornea of the eye create golden-brown rings visible on slit-lamp examination — called Kayser-Fleischer rings. They are present in nearly all patients with neurological Wilson's and in about 50% of those with hepatic presentation only. They are one of the key diagnostic features.

Treatment

  • Penicillamine — chelates (binds) excess copper and removes it via urine. First-line for most. Must be taken away from food. Can cause initial worsening of neurological symptoms.
  • Trientine — an alternative chelator used when penicillamine is not tolerated. Similar mechanism.
  • Zinc — used for maintenance or in presymptomatic patients. Blocks copper absorption in the gut without mobilising stored copper. Fewer side effects than chelators.
  • Liver transplant — curative for the liver disease; also corrects the metabolic defect. Used in acute liver failure or end-stage disease not responding to medication.

Dietary Copper Restriction

During the first year of treatment, a low-copper diet is recommended. High-copper foods to limit or avoid: liver and offal, shellfish (especially oysters), chocolate, nuts, mushrooms, and drinking water from old copper pipes.

Useful Resources

  • Wilson's Disease Support Group — wilsonsdisease.org.uk
  • Wilson Disease Association (international) — wilsonsdisease.org
  • British Liver Trust — britishlivertrust.org.uk

💉 My Haemophilia Record

✓ Saved

📋 Factor Level & Monitoring Log

DateFactor Level (%)Inhibitor Titre (BU)Reason for TestNotes
✓ Saved

💡 Haemophilia — Information Hub

What Is Haemophilia?

Haemophilia is a rare bleeding disorder in which the blood does not clot properly. It is caused by a deficiency of a clotting factor — factor VIII in haemophilia A and factor IX in haemophilia B (also called Christmas disease). Haemophilia A is about 4 times more common than B. Both are usually inherited in an X-linked recessive pattern — primarily affecting males, with females often being carriers.

Severity and Factor Levels

  • Severe (<1%): Spontaneous bleeds into joints and muscles without any injury. Prophylactic treatment started in childhood.
  • Moderate (1–5%): Bleeds from minor injuries; occasional spontaneous bleeds. May or may not be on prophylaxis.
  • Mild (5–40%): Bleeds usually only from significant injury or surgery. Often not diagnosed until a procedure or trauma reveals the problem.

Inhibitors

Around 25–30% of people with severe haemophilia A (and ~3% with B) develop inhibitors — antibodies that neutralise the infused clotting factor, making standard treatment ineffective. Managing inhibitors is the most complex challenge in haemophilia care. Options include bypassing agents (e.g. FEIBA, NovoSeven) and immune tolerance induction (ITI).

Emicizumab (Hemlibra)

A revolutionary subcutaneous injection that mimics the function of factor VIII — it is effective even in people with inhibitors. Given weekly, fortnightly, or monthly. It has significantly reduced the burden of IV infusions for many people with haemophilia A.

What to Tell A&E

  • Always carry your haemophilia treatment card (issued by your haemophilia centre)
  • Tell staff your diagnosis, severity, and factor product immediately
  • Do not receive intramuscular (IM) injections without factor cover
  • Avoid aspirin and NSAIDs (ibuprofen) — they impair platelet function and worsen bleeding risk
  • Your haemophilia centre has a 24-hour emergency line — provide the number to A&E staff

Useful Resources

  • The Haemophilia Society — haemophilia.org.uk — UK patient charity
  • World Federation of Hemophilia — wfh.org
  • NHS Haemophilia Centres — all UK centres listed at haemophilia.org.uk/our-work/haemophilia-centres

Patient Summary & Export

📋 Choose Report Range

Select the period to include in the summary. The report will contain vital information, logs, medications, allergies, and clinical alerts — formatted for handover to a GP or hospital.

Report recipient — pre-sets content below
Date range
→
Include in report

👁️ Summary Preview

📱 QR Code

Generates a QR code containing patient data as a compact plain-text payload. Scan with any QR reader. Data is self-contained — no server required.

Emergency only: name, NHS no., DOB, allergies, sepsis protocol, emergency contacts.
+ Vitals: above + TPN regime, medications, current month log.
Full passport: all sections (large QR — best printed at A5+).

Print and attach to the physical passport folder. ⚠️ The QR code contains unencrypted patient data. Keep printed copies secure and treat them as confidential medical records.

🖨️ Print Cards

Print a wallet card or fridge sheet showing your critical emergency information. Paramedics are trained to check the fridge door first when called to a home.

💳 Wallet Card

85×54 mm — bank card size. Name, blood type, allergy, and QR code. Print on card stock and keep in your wallet.

🧲 Fridge Sheet

A5 — for the fridge door. Name, NHS number, blood type, emergency contacts, and QR code. Laminate and fix to fridge.

🚨 Emergency Link (No Login Required)

Generate a private link that shows your critical emergency information — name, blood type, allergies, and emergency contacts — without requiring anyone to log in. Ideal for paramedics, A&E staff, or printing on a wallet card. Expires in 30 days and can be revoked at any time.

Loading…

🖨️ Print Cards

85×54 mm — bank card size. Print on card stock, cut out, and keep in your wallet.

Opens in a new window — click Print to print, then close

A5 sheet for your fridge door. UK paramedics check here first when responding to a 999 call at a home.

Opens in a new window — click Print to print, then close

📖 User Guide

⚠️ Important — Please Read

The Personal Health Passport is a patient-held information tool — not a medical device, clinical system, or substitute for professional medical advice.

  • All information entered in this passport is provided by the patient and is self-reported. It has not been clinically verified, validated, or approved by any medical professional.
  • This passport is designed to support clinical conversations — not to replace them. Clinicians should always verify critical information (medications, allergies, diagnoses) against NHS records before acting on it.
  • The information hubs and guides in this app are provided for general educational purposes only. They do not constitute medical advice and should not be used to self-diagnose or self-treat.
  • In a medical emergency, call 999 immediately. Do not rely solely on this passport in a life-threatening situation.
  • The accuracy of this passport depends entirely on the patient keeping it up to date. Information may be incomplete, out of date, or contain errors.
  • This application is not regulated as a medical device under UK MDR 2002 or EU MDR 2017.

By using this passport you acknowledge that it is a personal record-keeping tool and you take responsibility for the accuracy of the information you enter. If you are unsure about any aspect of your health, always seek advice from a qualified healthcare professional.

About This Guide

This passport is yours — filled in by you, at home, in your own words. It gives doctors, nurses, and paramedics an instant picture of your health when you can't speak for yourself or when you're seen by someone who doesn't know you. Use this guide to understand what each section is asking for and why it matters.

🚀 Getting Started

New to your Health Passport? Start with the Setup Wizard — it walks you through your core details, contacts, medications, and helps you choose which condition-specific sections to include. You don't need to fill everything in at once. Even a partially completed passport is far better than none.
  • 1 — Run the Setup Wizard Tap the ⚙️ Setup button on the Section Index. The wizard guides you through your personal details, emergency contacts, medications, and lets you switch on only the sections relevant to your conditions. It saves as you go.
  • 2 — Master Record (Section 1) The most important section. Your name, date of birth, NHS number, allergies, and blood group. This is the first thing any clinician looks at. Even if you only complete one section, make it this one.
  • 3 — Medications (Section 5) List every medication you take — name, dose, and frequency. This single section can prevent dangerous prescribing errors every time you see a new clinician.
  • 4 — Contact Directory (Section 2) Add your GP, next of kin, and any specialist nurses or consultants. Set your emergency contacts in the orange banner at the top of every page.
  • 5 — Care Plan (Section 4) Write a brief escalation plan — what to do if your condition worsens. Even a few sentences can save critical time in a crisis.
  • 6 — Add your condition sections Back in the Section Index, tap ⚙️ Update My Conditions (or run Setup again) to switch on sections for your specific conditions — diabetes, stoma, COPD, cancer, mental health, rare diseases, and more. Only what you need will appear in your navigation.
  • 7 — Generate your QR code Once your key sections are filled in, go to Patient Summary & Export. Choose a preset (Emergency, GP, Hospital, or Full) and tap Generate QR. Print it and carry it with you — any clinician can scan it.
  • Keeping it up to date Review your passport after every admission, medication change, or new diagnosis. Use Daily Logs and Calendar Hub for regular lightweight entries. If your health situation changes significantly, run Setup again to add or remove sections.
💡 Tip: You don't need to fill in every field. Focus on the sections most relevant to your conditions first, then build up over time. A partially completed passport is far better than a blank one.

⚙️ Setup Wizard

The Setup Wizard configures your passport in 8 quick steps. It switches on only the sections relevant to your conditions — so your navigation stays clean and personal. Run it at any time from the Section Index (⚙️ Setup) or the sidebar (⚙️ Update my conditions). Re-running it is always safe — it pre-fills from your existing data and never erases anything you haven't changed.
  • Step 1 — Welcome A brief overview of what the wizard covers. Press Next to begin.
  • Step 2 — Your Details Fills in your Master Record — name, date of birth, NHS number, address, height, weight, blood type, diet, and other personal details. This is the most important step and the one clinicians look at first.
  • Step 3 — Your Team & Medications Add your emergency contacts, GP, and specialist nurses. Enter your current medications. Record any important clinical alerts (e.g. mental health triggers, admission notes).
  • Step 4 — Specialist Care Are you on enteral nutrition (tube feed or TPN/HPN)? Do you receive homecare nurse visits? Say Yes to the relevant options — this adds the nutrition and homecare sections to your navigation.
  • Step 5 — Medical Conditions Part 1 A grid of 11 common medical conditions. Tap Yes on each one that applies to you: Diabetes · Blood Glucose · Heart Conditions · Kidney & Renal · Liver Health · Stroke & Neurological · Cancer Care · Respiratory Health · Digestive & GI · Depression/Anxiety/Mood · Thyroid & Endocrine. Each Yes unlocks the matching section.
  • Step 6 — Medical Conditions Part 2 A grid of 12 more specialist conditions: Allergies & Anaphylaxis · COPD & Sleep Support · Musculoskeletal & Pain · Skin Conditions · Eye & ENT / Sensory · Autoimmune & Rheumatology · Blood & Haematology · Rare & Complex Diseases · Dementia & Memory · Migraine & Headache · CFS/ME & Long COVID · HIV & Immunology.
  • Step 7 — Support & Wellbeing A grid of 10 support-related sections: Mental Health & Crisis · Mental Health Expansion · Wellbeing & Battle Plan · Stoma Care · Physiotherapy · Breaks & Fractures · Carer Information · End of Life & DNACPR · Counselling & Therapy · Medical Cannabis.
  • Step 8 — All Done! Your preferences are saved and your navigation updates immediately. Only the sections you said Yes to will appear — everything else stays hidden until you need it.
  • Re-running the wizard If you receive a new diagnosis or your situation changes, re-run the wizard to add new sections. Existing data in completed sections is never overwritten.
  • Skipping steps You can skip any step and come back later. Use ⚙️ Update my conditions in the sidebar at any time to open the wizard again.
💡 Even if you only say Yes to 2 or 3 conditions, your navigation becomes much easier to use — you won't see sections that aren't relevant to you. You can always add more later as your health picture changes.

⚠️ Disclaimer & Important Information

Please read this before using your Health Passport. Understanding what this tool is — and what it is not — helps you use it safely and effectively.
  • Patient-held record only — This passport is a personal information tool. All data entered is self-reported by the patient. It has not been clinically verified, validated, or approved by any medical professional or healthcare organisation.
  • Not a substitute for medical advice — Nothing in this passport constitutes medical advice. The information hubs and guides are provided for general educational purposes only. Always consult a qualified healthcare professional about your health.
  • For clinicians — verify before acting — Information in this passport should be used as a starting point for clinical conversations, not as a definitive record. Always verify critical information (medications, allergies, diagnoses) against NHS records before making clinical decisions.
  • In an emergency — call 999 — Do not rely solely on this passport in a life-threatening emergency. Call 999 immediately. This passport is a communication aid, not a treatment guide.
  • Accuracy is your responsibility — The usefulness of this passport depends entirely on keeping it up to date. Incomplete or out-of-date information can be misleading. Review it regularly, especially after medication changes, admissions, or new diagnoses.
  • Data security — Your passport data is stored securely. However, the QR code and printed export contain real health information — treat them as confidential medical documents. Do not share them publicly or leave printed copies unattended.
  • Not a regulated medical device — This application is not regulated as a medical device under UK MDR 2002, EU MDR 2017, or any other medical device regulation.
  • No liability — The creators of this passport accept no liability for clinical decisions made on the basis of information entered here, or for any errors or omissions in the content of information hubs or guides.
If you are unsure about anything in your health record, always ask your GP, consultant, or specialist nurse. You are always entitled to a clear explanation of your diagnosis, medications, and care plan.

Health Insights Dashboard

The Health Insights Dashboard automatically reads data you have already logged — blood glucose, weight, daily vitals, appointments, and more — and shows it to you as charts, stats, and trends. Nothing here needs to be filled in manually; it updates every time you navigate to it.
  • Quick Stat Pills — Four summary boxes at the top showing your most recent blood pressure, heart rate, blood glucose, and current weight. These are pulled from your latest Daily Log entry (S11) automatically.
  • Logging Streak & Week Progress — Tracks how many days in a row you have logged and marks each day of the current week. The flame icon shows your streak; the dots (M–S) show which days this week you have logged.
  • Charts — Six charts display your recent data: vitals (BP, heart rate, O2%), weight trend, blood glucose, mood and sleep, symptoms, and fluid intake. Use the 7d / 14d / 30d / 90d buttons to change the time range. Click the expand icon to view any chart full-screen.
  • AI Weekly Observations — Client-side insight cards generated from your logged data. These are not medical advice — they are pattern observations to help you spot trends and prepare questions for your next appointment. A note on privacy: all analysis happens on your device; no data is sent to any AI service.
  • Upcoming Appointments — Pulls your next upcoming appointments directly from your Appointments section (S7).
  • Data sources — The dashboard reads from: Daily Clinical Logs (S11), Blood Glucose (S10), Weight Log (S22), Appointments (S7), and Hospital Admissions in S6. No data is saved specifically for the dashboard — it is always live.
💡 The more consistently you fill in your Daily Log (S11), the richer and more useful your dashboard becomes. Even a 30-second log — just weight and mood — adds value over time.

Section 1 — Master Record & Allergies

This is the most important section. It goes at the front of your passport and is the first thing any clinician will look at. Fill it in as completely as you can — it could be lifesaving in an emergency.
  • Full name / Date of birth / NHS numberYour NHS number is the 10-digit number on your appointment letters, prescriptions, or your GP's records. It uniquely identifies you across all NHS services.
  • Primary diagnosisYour main condition — the one that is managed most actively. For example: "Intestinal Failure", "Crohn's Disease", "Type 1 Diabetes". Use the name your hospital team uses.
  • Known allergiesList anything that has caused a bad reaction — medicines, foods, latex, dressings, contrast dye. Include what the reaction was (e.g. "Penicillin — anaphylaxis", "Elastoplast — skin blistering"). If you have no known allergies, write "NKDA" (No Known Drug Allergies).
  • Blood groupFound on a blood donor card, a hospital letter, or you can ask your GP. Not everyone knows this — leave it blank if unsure and a clinician can check.
  • Consultant / Named nurseThe specialist doctor or nurse who leads your care. Found on your clinic letters — usually says "Dear [your name], I reviewed you today in the clinic of Mr/Dr…"
Keep this section updated whenever your diagnosis, consultant, or allergies change. It's the one section paramedics and A&E staff will read first.

Section 2 — Contact Directory

A quick-reference list of everyone involved in your care — so that any clinician treating you can contact the right person fast, day or night.
  • GP (General Practitioner)Your family doctor — your first point of contact for most non-emergency health matters. Include the surgery name and phone number, not just the GP's name.
  • Next of kinThe person to contact if you are incapacitated. This should be someone who knows your wishes and your medical history.
  • Specialist nurse / CNSCNS stands for Clinical Nurse Specialist. Many long-term conditions have a dedicated CNS who knows you well and can advise on your care between hospital appointments.
  • Homecare companyIf you receive nutrition, medication, or equipment at home through a company (e.g. Nutricia, Calea, Baxter), include their 24-hour helpline — not just the office number.
  • Out-of-hours / Emergency contactsSome hospitals have a specialist on-call line for complex patients. Ask your CNS or consultant if one exists for your condition — it's worth including here.
Aim for at least one contact number per care team. A name without a number isn't much use to an A&E doctor at 2am.

Section 3a — Enteral / TPN Nutrition

If you receive nutrition through a tube or directly into your bloodstream, this section records the details of your regime. It is critical information for any nurse or doctor looking after you in hospital — getting nutrition wrong can cause serious complications.
  • TPN (Total Parenteral Nutrition)Nutrition given directly into your bloodstream through a central line. "Parenteral" means bypassing the gut. Used when the gut cannot absorb nutrition normally.
  • Enteral nutritionNutrition delivered through a tube into the stomach or small bowel (e.g. via an NG tube, PEG, or RIG). "Enteral" means via the gut.
  • NG tube (Nasogastric)A thin tube passed through your nose, down your throat, and into your stomach. Used for short-term feeding.
  • PEG / RIGA tube inserted through the abdominal wall directly into the stomach (PEG) or intestine (RIG). Used for longer-term feeding.
  • Hickman line / PICC line / PortTypes of central venous catheters used to deliver TPN. A Hickman line exits the chest; a PICC enters via the arm; a port sits under the skin. Record which type you have and which vein it is in.
  • RegimeYour prescribed nutrition schedule — how many bags, how many hours per day, and at what rate (ml/hr). This is set by your dietitian and should not be changed without medical advice.
  • Additives / VitaminsExtra supplements added to your TPN bags — such as vitamins, trace elements, or electrolytes. Your pharmacist or dietitian can tell you what's in your bags.
If you're admitted to hospital, show this section immediately — ward staff may not be familiar with home TPN and need your exact regime details.

Section 3b — Line Infection History

If you have a central line, infections are a serious risk. This section is a record of every line infection you've had — which bugs caused them and which antibiotics treated them. This history helps doctors choose the right antibiotic quickly if you develop another infection.
  • CLABSICentral Line-Associated Bloodstream Infection — an infection that enters the blood via a central line. Symptoms include fever, chills, and feeling suddenly unwell.
  • Organism / PathogenThe bug (bacterium or fungus) that caused the infection. Found on your blood culture results, e.g. "Staphylococcus epidermidis", "Candida albicans".
  • Antibiotic / Antifungal usedThe medicine used to treat the infection. Knowing this helps doctors see patterns — for example if the same bug keeps returning or if you've become resistant to a particular antibiotic.
  • Line salvaged or removedWhether your line was saved (treated in place) or had to be removed and replaced. Some infections require removal; others can be treated without removing the line.
  • Date of infectionApproximate dates are fine if you don't know exactly. Your hospital discharge letters will have the details.
Your infection history is not something to be embarrassed about — line infections are a known risk of long-term IV access, not a sign of poor hygiene. Recording them accurately helps your team protect you better.

Section 4 — Care Plan & Escalation

Your care plan is a summary of how your condition is managed day-to-day, and what to do if things go wrong. Think of it as your personal instruction manual for anyone treating you who doesn't know you.
  • Escalation planA step-by-step guide for what to do if your condition worsens. For example: "If temperature rises above 38°C, call the TPN helpline first. If no answer within 30 minutes, go to A&E." Agree this with your clinical team.
  • Baseline observationsYour "normal" readings — blood pressure, heart rate, temperature, oxygen levels. What's normal for you may be different from average, so recording your baseline helps clinicians spot when something is wrong.
  • DNACPR / DNARDo Not Attempt Cardiopulmonary Resuscitation. This is a formal medical decision — not something to fill in yourself. If you have one in place, note that it exists and where the form is kept.
  • Hospital admission triggersSymptoms or situations that mean you should go straight to hospital rather than waiting. Agreed with your team — e.g. "Any rigors (uncontrollable shaking) = go to A&E immediately."
  • Preferred hospitalThe hospital where your records are held and your specialist team works. In an emergency it may not be possible, but paramedics will try to take you there if they can.
Write this section in plain language. In a crisis, someone who has never met you may need to follow your escalation plan quickly and clearly.

Section 5 — Current Medications

A complete, up-to-date medication list is one of the most useful things you can carry. It prevents dangerous prescribing errors — especially when you're treated by someone who doesn't know you.
  • Generic name vs brand nameMost medicines have two names. The generic name is the actual drug (e.g. "paracetamol"); the brand name is the manufacturer's name (e.g. "Panadol"). Use the generic name if you know it — it's recognised everywhere.
  • DoseHow much you take each time — e.g. "500mg", "10 units". This is on your prescription or the medicine label.
  • FrequencyHow often you take it — e.g. "twice daily", "at night", "with meals", "as needed".
  • RouteHow you take it — by mouth (oral), injection, IV (intravenous), under the tongue (sublingual), topically (on skin), inhaled, etc.
  • Prescribed byWhich clinician prescribed it — your GP, consultant, or another specialist. Useful when a new doctor wants to know who to contact about a medication.
  • Critical / time-sensitive medicinesSome medicines must not be missed or delayed — for example steroids, insulin, anti-epileptics, immunosuppressants. Flag these clearly.
Review this section every time a medication is added, changed, or stopped. An out-of-date list is worse than no list — a doctor might prescribe something you're no longer taking, or miss something you are.

Section 6 — Medical History & Surgery

A timeline of your significant diagnoses, operations, and medical events. You don't need every GP visit — focus on things that changed your health permanently or required hospital care.
  • Diagnosis dateWhen your condition was first confirmed — not when symptoms started. Approximate years are fine (e.g. "2018").
  • Surgical proceduresList all operations, including the type and year. For example: "Laparotomy with bowel resection — 2019, Royal London Hospital." Surgeons need to know what's been done before to plan safely.
  • Bowel resectionSurgical removal of a section of the bowel. Important to record how much and which part was removed, as this affects nutrition and absorption.
  • Short bowel syndromeA condition that occurs when not enough functioning small bowel remains to absorb adequate nutrition. Often results from multiple resections.
  • Significant hospitalisationsMajor admissions that resulted in changes to your care, diagnosis, or surgery. You don't need to list routine check-ups.
  • Family historyConditions that run in your family — particularly inherited conditions like Familial Adenomatous Polyposis (FAP) or hereditary bowel conditions.
Your hospital discharge summaries are the best source for accurate dates and procedure names. Ask your GP for copies if you don't have them.

Section 7 — Appointment Record

A log of your upcoming and past clinic appointments. Useful for tracking what's been discussed, what was decided, and when your next review is due.
  • Clinic typeThe type of appointment — e.g. "Gastroenterology outpatient", "Dietitian review", "Nurse-led TPN clinic", "Radiology follow-up".
  • Outcome / ActionsWhat was decided at the appointment — changes to your plan, referrals made, tests ordered. Use your clinic letters as the source — they summarise what was discussed.
  • Follow-up intervalHow long until your next review — "3 months", "6 months", "as needed". If you don't know, it will be on your clinic letter.
  • Referrals madeIf your consultant referred you to another specialist, note it here so you can track whether the appointment has been booked.
Keep clinic letters — they are the most reliable record of what was discussed and decided. Scan or photograph them and keep a digital copy.

Section 8 — Current Clinical Status

This is your live briefing sheet — what is happening right now with your health. It is the first thing a clinician should read when they meet you. Unlike Section 6 (your full medical history), this section changes regularly and should be kept up to date.
  • What I Want You To KnowWrite this in your own words, as if speaking directly to a doctor who has never met you and has 30 seconds to understand your situation. Include the things you always have to repeat and any mistakes that have happened because someone didn't know your history.
  • Current Care SettingWhere you are currently being cared for — home, hospital, hospice, or recently discharged. This helps a clinician understand your current situation at a glance.
  • Active InvestigationsTests, scans, or procedures that are currently awaited, in progress, or recently completed with results pending. Include the type, what it is for, and its current status.
  • Current ConcernsSymptoms or issues that are actively being monitored or investigated by your team. These are things that haven't been resolved yet.
  • Key Clinical DatesImportant one-off dates — when your condition was first diagnosed, when treatment started, most recent surgery. Quick reference for any clinician.
Update this section after every hospital admission, when a new investigation starts, or when your situation changes. Think of it as the back cover summary of your passport — the snapshot a clinician reads before opening the full record.

Section 9 — Homecare Nurse Visit Log

If a nurse visits you at home to deliver clinical care — for example to change a dressing, take blood samples, carry out observations, or support with a medical device — this section logs every visit. It creates a clear record for you and your clinical team.
  • Homecare providerThe company or NHS service that arranges your home nursing visits. Examples include Nutricia, Calea, B.Braun, or the NHS Community Nursing Service. Record the provider name and your key contact at the top of this section.
  • Homecare nurseA qualified nurse who visits your home to deliver clinical care. They may be employed by a homecare company or by the NHS.
  • Tasks completedThe care carried out during the visit — for example dressing change, blood draw, observations, medication administration, wound care, or stoma support. Select from the dropdown or add a note.
  • Blood draw / bloods takenTaking blood samples at home for laboratory testing — so you don't need to travel to hospital or a GP surgery for routine monitoring.
  • ObservationsBasic health checks recorded during the visit — blood pressure, heart rate, temperature, oxygen levels, weight. These form a baseline to detect changes over time.
  • Issues notedAny concerns raised by the nurse — for example redness at a wound or line site, unexpected readings, or symptoms you reported. These should be followed up with your clinical team.
  • Blood draw results logUse the separate Blood Draw Results card to record the actual results when they come back from the lab. Results are not always available on the day of the visit.
If a homecare nurse notices anything during a visit, make sure it is recorded here and reported to your clinical team — never assume it was passed on automatically.

Section 10 — Blood Glucose Monitoring

Blood glucose monitoring is used by many patients — people with Type 1 or Type 2 diabetes, those on insulin, people receiving IV or tube nutrition, patients on steroids, and anyone whose condition or treatment affects blood sugar. This section logs your readings so patterns can be spotted over time.
  • Blood glucose (BG)The amount of sugar (glucose) in your blood at a given moment. Measured in mmol/L in the UK. A normal fasting level is roughly 4–7 mmol/L, but your target range may be different — always go by what your clinical team advises.
  • Hypoglycaemia (hypo)Blood glucose that is too low — usually below 4 mmol/L. Symptoms include shaking, sweating, confusion, and feeling faint. Treat immediately with fast-acting sugar (e.g. glucose tablets, Lucozade, fruit juice) and follow your team's hypo plan.
  • Hyperglycaemia (hyper)Blood glucose that is too high. Symptoms can include thirst, frequent urination, tiredness, and blurred vision. Persistent or severe hypers need medical attention.
  • HbA1cA blood test (taken in a lab, not at home) that shows your average blood sugar over the past 2–3 months. Measured as a percentage or mmol/mol. Used to assess long-term glucose control.
  • Target rangeThe blood glucose range your clinical team wants you to stay within. This varies by condition and treatment — your diabetes team, GP, or specialist will set your personal target.
  • When to testYour team will advise on timing. Common testing points include before meals, 2 hours after meals, before bed, during or after IV or tube nutrition, after exercise, or if you feel unwell.
  • Steroid-related glucose changesCorticosteroids (such as prednisolone or dexamethasone) often raise blood glucose significantly, even in people without diabetes. If you are on steroids, your glucose monitoring may need to be more frequent.
Always record the time alongside each reading — the pattern of when readings are high or low is often more useful to your clinical team than any individual number.

Section 11 — Daily Clinical Logs

The daily log is your day-by-day health diary. Completing it regularly builds a picture of how you're doing over time — helping you and your team spot patterns, triggers, and changes before they become problems.
  • Customise Your LogOpen the Customise panel at the top of the page and tick the modules relevant to your conditions. Core vitals (BP, heart rate, oxygen, temperature, weight, mood) are always shown. Optional modules add extra columns.
  • OutputIn a medical context, "output" means fluid leaving your body — urine, stoma output, wound drainage, vomit. Recording this helps detect dehydration or blockages.
  • Stoma outputThe consistency of waste passing through your stoma. Select from the dropdown — Liquid, Watery, Loose, Semi-formed, Formed, Blood noted, Mucus noted, or No output. Changes in consistency or no output with pain should be reported to your team.
  • Bristol Stool ScoreA number from 1–7 describing stool consistency. Types 3–4 are normal. Types 1–2 mean constipation; types 6–7 mean diarrhoea. See the info hub on this page for the full chart.
  • WeightDaily or regular weight measurements help detect fluid retention (sudden weight gain) or fluid loss. Try to weigh yourself at the same time each day, in similar clothing.
  • TemperatureYour body temperature. A reading above 37.5°C (or 38°C, depending on your team's advice) can be a sign of infection and may trigger your escalation plan.
  • Peak flowA measure of how fast you can breathe out — used to monitor asthma and COPD. Measured in litres per minute (L/min). Your team will give you a personal target range.
  • Tube Feed / IV Nutrition timingWhen your feed connected and disconnected — helps your team correlate symptoms with feeding times.
You do not need to fill in every field every day — even weight and temperature alone are valuable over time. The info hub on this page explains every module and includes a full Bristol Stool Chart reference.

📖 Full Medical Abbreviations & Jargon Reference

A plain-English glossary of every abbreviation, acronym, and medical term used anywhere in this Health Passport — from daily log codes to cancer markers. Use the scroll bar to find the term you need. Terms are grouped by topic.

Daily Log Codes

  • Start / End — The times your TPN or feed infusion began and finished, in 24-hour format (e.g. 20:00–08:00).
  • BP — Blood Pressure — Recorded as two numbers in mmHg, e.g. 120/80. The top (systolic) is pressure when the heart beats; the bottom (diastolic) is pressure between beats.
  • HR — Heart Rate — Heartbeats per minute (BPM). Above 100 BPM = tachycardia (fast); below 50 BPM = bradycardia (slow). Both should be reported.
  • O2 / SpO2 — Oxygen Saturation — Percentage of oxygen in your blood, measured by a finger-clip pulse oximeter. Normal: 95–100%. Below 92% is a red flag.
  • Temp — Core Temperature — Body temperature in °C. Normal: 36.1–37.2°C. Above 38°C or below 36°C are red flags, especially if you have a central line.
  • BG — Blood Glucose — Sugar level in your blood (mmol/L). Normal fasting: 4.0–7.0 mmol/L. Below 3.9 = hypo (too low); above 12.0 = hyper (too high).
  • Wt — Weight — In kilograms. A sudden change of 1–2 kg overnight usually signals fluid gain or loss, not fat change.
  • RR — Respiratory Rate — Breaths per minute. Normal adult: 12–20. Above 25 is a red flag.
  • Mood — Mental wellbeing on a 1–10 scale (10 = best). Not a clinical measurement — helps your team understand how you're feeling day to day.
  • NBM — Nil By Mouth — Nothing to eat or drink. TPN may continue while you are NBM.
  • Output — All fluid or waste leaving the body: urine, stoma output, vomit, wound drainage. High or low output can signal dehydration or a blockage.

Vital Signs & Measurements

  • Systolic — The higher blood pressure number; pressure in arteries when the heart beats.
  • Diastolic — The lower blood pressure number; pressure between heartbeats.
  • Tachycardia — Heart rate above 100 BPM.
  • Bradycardia — Heart rate below 60 BPM.
  • Hypertension — Persistently high blood pressure (usually above 140/90 mmHg).
  • Hypotension — Low blood pressure (usually below 90/60 mmHg). Can cause dizziness or fainting.
  • Hypoxia — Not enough oxygen reaching the body's tissues. Often shown by low SpO2.
  • Hypercapnia — Too much carbon dioxide in the blood; can occur with breathing problems.
  • Tachypnoea — Abnormally fast breathing (above 20 breaths per minute).
  • Dyspnoea — Breathlessness or difficulty breathing.
  • BMI — Body Mass Index — Weight (kg) divided by height (m) squared. A rough measure of healthy weight range.
  • mmHg — Millimetres of Mercury — The unit used to measure blood pressure.
  • mmol/L — Millimoles per Litre — The unit used for blood glucose and many other blood test results in the UK.

Nutrition, Lines & Tubes

  • TPN — Total Parenteral Nutrition — A liquid feed delivered directly into the bloodstream through a central line, bypassing the gut completely. Used when the digestive system cannot absorb nutrition.
  • Enteral Nutrition — Feeding via a tube into the stomach or bowel (gut is still used, unlike TPN).
  • PICC — Peripherally Inserted Central Catheter — A long, thin tube inserted into a vein in the arm and threaded to a large vein near the heart. Used for TPN and IV medications.
  • CVC — Central Venous Catheter — A tube placed into a large central vein (e.g. in the neck, chest, or groin). Allows TPN, blood tests, and IV drugs to be given.
  • CVAD — Central Venous Access Device — An umbrella term for any central line (PICC, CVC, port, Hickman line).
  • CVP — Central Venous Pressure — The pressure measured in the large veins near the heart; used to assess fluid levels.
  • Hickman / Broviac Line — A tunnelled CVC that exits the skin on the chest; designed for long-term use at home.
  • Port / Portacath — A device implanted under the skin with a central line attached; accessed with a special needle. Less visible and lower infection risk than external lines.
  • NGT — Nasogastric Tube — A tube passed through the nose, down the throat, into the stomach. Used for feeding or draining stomach contents.
  • NJT — Nasojejunal Tube — Similar to an NGT but reaches further into the small bowel (jejunum), bypassing the stomach.
  • PEG — Percutaneous Endoscopic Gastrostomy — A feeding tube inserted through the skin directly into the stomach under endoscopic guidance. Used for long-term tube feeding.
  • PEJ — Percutaneous Endoscopic Jejunostomy — Like a PEG but placed into the small bowel (jejunum).
  • RIG — Radiologically Inserted Gastrostomy — A gastrostomy tube placed using X-ray guidance rather than an endoscope.
  • IVC — Inferior Vena Cava — The large vein that carries blood from the lower body to the heart.
  • SVC — Superior Vena Cava — The large vein that carries blood from the upper body to the heart; where central lines sit.
  • Infusion — A fluid (nutrition, medication, or saline) dripped slowly into the bloodstream through a line.
  • Lumen — One channel inside a catheter. A double-lumen line has two separate channels.

Blood Tests

  • FBC — Full Blood Count — Measures red cells, white cells, platelets, and haemoglobin. The most common routine blood test.
  • Hb — Haemoglobin — The protein in red blood cells that carries oxygen. Low Hb = anaemia.
  • WBC — White Blood Cell count — Measures infection-fighting cells. High = possible infection or inflammation; low = increased infection risk.
  • Platelets (PLT) — Cells that help blood clot. Low platelets increase bleeding risk.
  • MCV — Mean Corpuscular Volume — The average size of red blood cells. Helps identify the cause of anaemia.
  • U&E — Urea & Electrolytes — A blood test checking kidney function and salt balance (sodium, potassium, creatinine, urea).
  • eGFR — Estimated Glomerular Filtration Rate — A measure of how well the kidneys are filtering blood. Below 60 indicates reduced kidney function.
  • Creatinine — A waste product filtered by the kidneys. High levels suggest the kidneys are not working well.
  • LFT — Liver Function Tests — Blood tests checking liver health: ALT, AST, ALP, albumin, bilirubin.
  • ALT — Alanine Aminotransferase — A liver enzyme. Raised levels indicate liver inflammation or damage.
  • AST — Aspartate Aminotransferase — Another liver enzyme, also raised in liver or muscle damage.
  • ALP — Alkaline Phosphatase — A liver and bone enzyme. Raised levels can indicate liver, bile duct, or bone disease.
  • Bilirubin — A yellow pigment made when red blood cells break down. High levels cause jaundice (yellowing of skin/eyes).
  • Albumin — A protein made by the liver. Low albumin suggests malnutrition or liver disease.
  • CRP — C-Reactive Protein — A marker of inflammation or infection. Rises quickly when the body is fighting something.
  • ESR — Erythrocyte Sedimentation Rate — Another inflammation marker; slower to rise than CRP.
  • INR — International Normalised Ratio — Measures how long blood takes to clot. Used to monitor warfarin (blood-thinning medication).
  • HbA1c — Haemoglobin A1c — A 3-month average of blood sugar levels. Used to diagnose and monitor diabetes. Normal below 42 mmol/mol; diabetic 48 mmol/mol or above.
  • Cholesterol / HDL / LDL / Triglycerides — Fat levels in the blood. HDL ("good" cholesterol) should be high; LDL ("bad") and triglycerides should be low.
  • TSH — Thyroid Stimulating Hormone — Checks thyroid gland function. High TSH = underactive thyroid; low TSH = overactive.
  • T3 / T4 — Thyroid hormones. Low levels = hypothyroidism (underactive); high = hyperthyroidism (overactive).
  • Calcium / Phosphate / Magnesium — Minerals measured routinely in TPN patients. Imbalances can affect heart rhythm, muscle function, and bones.
  • Sodium / Potassium / Chloride / Bicarbonate — Electrolytes (salts) that maintain fluid balance and nerve/muscle function.
  • Cortisol — A stress hormone made by the adrenal glands. Measured to check for adrenal or pituitary problems.
  • ACTH — Adrenocorticotrophic Hormone — Stimulates the adrenal glands to produce cortisol.

Cancer Markers & Tests

  • PSA — Prostate-Specific Antigen — A blood test used to screen for and monitor prostate cancer. A rising PSA may indicate cancer progression.
  • CEA — Carcinoembryonic Antigen — A tumour marker used mainly in bowel cancer to monitor treatment response.
  • CA-125 — A tumour marker used mainly in ovarian cancer monitoring.
  • AFP — Alpha-Fetoprotein — A tumour marker for liver cancer and testicular cancer.
  • HCG — Human Chorionic Gonadotropin — A marker for testicular and some other cancers; also the hormone detected in pregnancy tests.
  • BRCA1 / BRCA2 — Genes that normally suppress tumour growth. Mutations significantly increase risk of breast and ovarian cancer.
  • HER2 — A protein that promotes cancer cell growth. HER2-positive breast cancers respond to specific targeted therapies (e.g. trastuzumab/Herceptin).
  • ER — Oestrogen Receptor — If breast cancer cells are ER-positive, they are fuelled by oestrogen and respond to hormone therapies like tamoxifen.
  • PR — Progesterone Receptor — Like ER, PR-positive cancers respond to hormone therapy.
  • Triple Negative — Breast cancer that is ER-, PR-, and HER2-negative. Harder to treat with hormonal or HER2 therapies; chemotherapy is usually used.
  • Gleason Score — A grading system (2–10) for prostate cancer based on how abnormal the cells look. Higher = more aggressive.
  • TNM Staging — A system describing cancer spread: T = tumour size, N = lymph node involvement, M = metastasis (spread to other organs). Stages I–IV.
  • FIGO Staging — A staging system used for gynaecological cancers (ovarian, cervical, uterine). Stages I–IV.
  • Metastasis — Cancer that has spread from its original site to other parts of the body (e.g. liver, lungs, bones, brain).
  • Breslow Thickness — The depth of a skin melanoma in millimetres. Deeper = higher risk.
  • PD-L1 — A protein on cancer cells that helps them hide from the immune system. Tested to see if immunotherapy is likely to work.
  • EGFR / ALK / KRAS / BRAF — Gene mutations tested in lung and bowel cancers to guide targeted therapy choices.
  • MSI — Microsatellite Instability — A feature of some cancers (especially bowel) linked to Lynch syndrome and immunotherapy response.
  • Lynch Syndrome — An inherited condition that increases risk of bowel, uterine, and other cancers due to faulty DNA repair genes.
  • DEXA Scan — Dual-Energy X-ray Absorptiometry — A scan measuring bone density. Results given as a T-score: above −1 = normal; −1 to −2.5 = osteopenia; below −2.5 = osteoporosis.

Respiratory & Sleep

  • COPD — Chronic Obstructive Pulmonary Disease — A lung condition (usually from smoking) causing long-term breathing difficulty. Includes emphysema and chronic bronchitis.
  • FEV1 — Forced Expiratory Volume in 1 second — The amount of air you can force out of your lungs in one second. A key measure of airway obstruction.
  • FVC — Forced Vital Capacity — Total air forced out in one breath. Used alongside FEV1 to assess lung function.
  • PEFR — Peak Expiratory Flow Rate — The fastest rate at which you can breathe out. Used to monitor asthma at home with a peak flow meter.
  • Spirometry — A breathing test that measures FEV1 and FVC to assess lung function.
  • Exacerbation — A sudden worsening of a chronic condition (e.g. a COPD flare-up or asthma attack).
  • Bronchodilator — A medication that relaxes and widens the airways (e.g. salbutamol inhaler). Used in asthma and COPD.
  • LABA — Long-Acting Beta-Agonist — A type of bronchodilator taken regularly (not as a rescue inhaler) to keep airways open.
  • LAMA — Long-Acting Muscarinic Antagonist — Another type of regular bronchodilator used in COPD.
  • AHI — Apnoea-Hypopnoea Index — The number of times per hour breathing stops or becomes very shallow during sleep. Used to diagnose and grade sleep apnoea. Above 5 = mild; above 30 = severe.
  • CPAP — Continuous Positive Airway Pressure — A machine delivering constant air pressure through a mask to keep the airway open during sleep. The main treatment for obstructive sleep apnoea.
  • BiPAP — Bilevel Positive Airway Pressure — Similar to CPAP but delivers different pressures when breathing in and out. Used for more complex breathing problems.
  • NIV — Non-Invasive Ventilation — Breathing support (like BiPAP) delivered through a mask rather than a tube in the throat.
  • Obstructive Sleep Apnoea (OSA) — A condition where the throat repeatedly collapses during sleep, causing pauses in breathing and poor sleep quality.
  • Bronchiectasis — Permanently widened and scarred airways that collect mucus, causing recurrent infections.
  • Pulmonary Fibrosis — Scarring of the lung tissue, making it stiff and harder to breathe. IPF (Idiopathic Pulmonary Fibrosis) has no known cause.
  • Pleural Effusion — A build-up of fluid around the lungs, which can cause breathlessness.

Women's Health

  • HRT — Hormone Replacement Therapy — Oestrogen (and sometimes progesterone) prescribed to relieve menopause symptoms.
  • OCP — Oral Contraceptive Pill — A daily pill containing hormones to prevent pregnancy.
  • IUD — Intrauterine Device — A small contraceptive device placed inside the womb. Can be copper (non-hormonal) or hormonal (Mirena).
  • PCOS — Polycystic Ovary Syndrome — A hormonal condition causing irregular periods, cysts on the ovaries, and sometimes excess hair or acne.
  • Endometriosis — A condition where tissue similar to the womb lining grows outside the womb, often causing pain and fertility problems.
  • Adenomyosis — Similar to endometriosis but the tissue grows into the muscle wall of the womb itself, causing heavy, painful periods.
  • Fibroids / Leiomyoma — Non-cancerous growths in or around the womb. Can cause heavy bleeding, pain, or pressure symptoms.
  • Amenorrhoea — Absence of periods. Primary = periods never started; secondary = periods stopped after previously being regular.
  • Menorrhagia — Unusually heavy periods.
  • Dysmenorrhoea — Painful periods.
  • Perimenopause — The transition period leading up to menopause, when periods become irregular and hormonal symptoms begin.
  • GSM — Genitourinary Syndrome of Menopause — Vaginal dryness, discomfort, and urinary symptoms caused by falling oestrogen after menopause.
  • Dyspareunia — Pain during sexual intercourse.
  • Colposcopy — A close examination of the cervix using a magnifying device, usually after an abnormal smear test result.
  • CIN — Cervical Intraepithelial Neoplasia — Abnormal cells on the cervix (not cancer). Graded CIN 1–3; higher grades are more likely to need treatment.
  • HPV — Human Papillomavirus — A common virus; certain strains cause cervical and other cancers. The HPV vaccine protects against the most harmful strains.
  • FSH — Follicle-Stimulating Hormone — A hormone that stimulates the ovaries. High FSH in a woman of reproductive age suggests reduced ovarian reserve or menopause.
  • LH — Luteinising Hormone — Works with FSH to control the menstrual cycle and trigger ovulation.
  • AMH — Anti-Müllerian Hormone — A marker of ovarian reserve (the number of eggs remaining). Used in fertility assessments.
  • Oophorectomy — Surgical removal of one or both ovaries.
  • Hysterectomy — Surgical removal of the womb. May be total (womb + cervix) or subtotal (womb only).
  • Salpingectomy — Surgical removal of one or both fallopian tubes.
  • BSO — Bilateral Salpingo-Oophorectomy — Removal of both fallopian tubes and both ovaries; causes surgical menopause.

Men's Health

  • PSA — Prostate-Specific Antigen — A blood test used to screen for and monitor prostate cancer. A single raised result does not confirm cancer.
  • DRE — Digital Rectal Examination — An examination of the prostate via the back passage. Used alongside PSA to assess prostate health.
  • BPH — Benign Prostatic Hyperplasia — A non-cancerous enlargement of the prostate gland, causing urinary symptoms (slow stream, frequency, urgency). Very common with age.
  • TURP — Transurethral Resection of the Prostate — A surgical procedure to remove excess prostate tissue obstructing the urethra. Sometimes called "reaming out" the prostate.
  • ADT — Androgen Deprivation Therapy — Hormone therapy that reduces testosterone to slow prostate cancer growth.
  • Gleason Score — A score (2–10) grading how aggressive prostate cancer cells look under a microscope. Higher = more aggressive.
  • TRT — Testosterone Replacement Therapy — Treatment for low testosterone (hypogonadism). Available as injections, gels, or patches.
  • Hypogonadism — A condition where the testes produce insufficient testosterone, causing fatigue, low libido, mood changes, and reduced muscle mass.
  • ED — Erectile Dysfunction — Difficulty achieving or maintaining an erection. Can be physical, psychological, or a combination.
  • Azoospermia — No sperm present in semen. Can be due to blockage or failure of sperm production.
  • Seminoma / NSGCT — The two main types of testicular cancer. Seminomas are slower-growing; NSGCTs (Non-Seminomatous Germ Cell Tumours) are faster-growing but often very treatable.
  • Varicocele — Enlarged veins in the scrotum (like varicose veins). Can affect fertility and cause mild discomfort.
  • Cryptorchidism — Undescended testicle(s) — one or both testes did not drop into the scrotum before birth.

Bones & Joints

  • Osteoporosis — A condition where bones become less dense and more likely to break. Diagnosed by DEXA scan (T-score below −2.5).
  • Osteopenia — Lower than normal bone density, but not as severe as osteoporosis (T-score −1 to −2.5). A warning stage.
  • Fragility Fracture — A break caused by a minor fall or knock, indicating weak bones.
  • Bisphosphonates — Medications (e.g. alendronate, risedronate) that slow bone loss and reduce fracture risk.
  • Arthralgia — Joint pain without visible swelling or inflammation.
  • Myalgia — Muscle pain. Common side effect of some medications (e.g. statins).
  • Anastomosis — A surgical join between two sections of bowel or blood vessel, after part has been removed.

Stoma & Gut Terms

  • Colostomy — A stoma made from the large bowel (colon). Output is usually formed or semi-formed stool.
  • Ileostomy — A stoma made from the small bowel (ileum). Output is liquid. High output can cause rapid dehydration.
  • Jejunostomy — A stoma from the upper small bowel (jejunum). Very high liquid output; often used alongside TPN.
  • Urostomy — A stoma that diverts urine, usually after bladder removal.
  • Peristomal Skin — The skin immediately surrounding the stoma. Irritation or breakdown here is a common problem.
  • Granulation Tissue — Pink, raised, moist tissue that can grow around a stoma or wound. Often bleeds easily; treatable by the stoma nurse.
  • Parastomal Hernia — A bulge beside the stoma caused by bowel or other tissue pushing through the abdominal wall.
  • Prolapse (stoma) — When the bowel slides outward through the stoma opening, appearing longer than usual.
  • Retraction — When a stoma sinks below the skin surface, making it harder to get a good bag seal.
  • Stenosis (stoma) — Narrowing of the stoma opening, which can restrict output and cause discomfort.
  • Effluent — The output from a stoma.
  • Flatus — Wind/gas passing through the stoma.
  • Bowel Obstruction — A blockage preventing contents moving through the bowel. Symptoms: no output, cramping, bloating, vomiting.
  • Adhesions — Scar tissue inside the abdomen that can cause the bowel to kink or twist, leading to obstruction or pain.
  • Tenesmus — A feeling of needing to pass stool even when the bowel is empty; often associated with inflammation or tumour.

Mental Health & Therapies

  • CBT — Cognitive Behavioural Therapy — A talking therapy that helps you identify and change unhelpful thought patterns and behaviours. Used for anxiety, depression, OCD, and more.
  • EMDR — Eye Movement Desensitisation and Reprocessing — A therapy for PTSD and trauma that uses guided eye movements to help process difficult memories.
  • CPN — Community Psychiatric Nurse — A mental health nurse who supports people in the community rather than in hospital. Usually the first point of contact for ongoing mental health needs.
  • PTSD — Post-Traumatic Stress Disorder — A mental health condition that develops after experiencing or witnessing a traumatic event. Symptoms include flashbacks, nightmares, and hypervigilance.
  • OCD — Obsessive-Compulsive Disorder — A condition involving unwanted intrusive thoughts (obsessions) and repetitive behaviours (compulsions) performed to reduce anxiety.
  • ADHD — Attention Deficit Hyperactivity Disorder — A neurodevelopmental condition affecting focus, impulse control, and activity levels.
  • Bipolar Disorder — A condition involving episodes of extreme high mood (mania) and low mood (depression).
  • TENS — Transcutaneous Electrical Nerve Stimulation — A small device that delivers mild electrical pulses to reduce pain. Commonly used for chronic pain management.
  • SALT — Speech and Language Therapy — Helps with swallowing difficulties (dysphagia), communication, and voice problems.
  • Dysphagia — Difficulty swallowing. Can be caused by neurological conditions, structural problems, or treatment side effects.

Infection & Immunity

  • Sepsis — A life-threatening response to infection where the body starts to damage its own organs. Symptoms: high temperature (or low), fast heart rate, confusion, clammy skin. Call 999.
  • MRSA — Methicillin-Resistant Staphylococcus aureus — A type of bacterial infection resistant to many common antibiotics. Important to record if you have been a carrier or had an MRSA infection.
  • VRE — Vancomycin-Resistant Enterococcus — A bacteria resistant to the antibiotic vancomycin; important in hospital infection control.
  • TB — Tuberculosis — A bacterial infection primarily affecting the lungs. Spread through the air; treatable but requires a long course of antibiotics.
  • Neutropenia — Low neutrophil count (infection-fighting white blood cells). A common side effect of chemotherapy. Increases infection risk significantly.
  • Thrombocytopenia — Low platelet count, increasing the risk of bleeding. Can be caused by chemotherapy, autoimmune disease, or other conditions.
  • Anaemia — Low haemoglobin; the blood carries less oxygen. Causes fatigue, breathlessness, and pallor. Many possible causes.
  • Autoimmune Disease — A condition where the immune system mistakenly attacks the body's own tissues (e.g. rheumatoid arthritis, lupus, inflammatory bowel disease).
  • IBD — Inflammatory Bowel Disease — An umbrella term for Crohn's disease and ulcerative colitis — conditions causing chronic gut inflammation.

General Medical & Surgical Terms

  • Laparotomy — Open abdominal surgery through a large incision.
  • Laparoscopy — Keyhole abdominal surgery using small incisions and a camera.
  • Resection — Surgical removal of a section of organ (e.g. bowel resection).
  • Colectomy — Surgical removal of part or all of the colon.
  • Nephrectomy — Surgical removal of a kidney.
  • Cystectomy — Surgical removal of the bladder.
  • Prostatectomy — Surgical removal of the prostate gland.
  • Lobectomy — Removal of a lobe of the lung or other organ.
  • Pneumonectomy — Removal of an entire lung.
  • Biopsy — Removal of a small sample of tissue for examination under a microscope to check for disease.
  • Endoscopy — A camera examination of the inside of the body via a natural opening or small incision (e.g. gastroscopy = stomach; colonoscopy = bowel).
  • Brachytherapy — Internal radiotherapy where a radioactive source is placed inside or very close to a tumour.
  • Adjuvant Therapy — Treatment given after the main treatment (e.g. chemotherapy after surgery) to reduce the chance of cancer returning.
  • Neoadjuvant Therapy — Treatment given before the main treatment (e.g. chemotherapy before surgery) to shrink a tumour first.
  • Palliative Care — Care focused on relieving symptoms and improving quality of life rather than curing a condition. Can be given alongside curative treatment.
  • Remission — When signs and symptoms of a disease reduce significantly or disappear. Complete remission = no detectable disease.
  • Exacerbation — A sudden worsening of a chronic condition.
  • Prophylaxis — A preventive treatment taken to stop a condition developing (e.g. prophylactic antibiotics before a procedure).
  • Contraindication — A reason why a particular treatment or medication should not be used for a specific patient.
  • Alopecia — Hair loss. A common side effect of chemotherapy.
  • Mucositis — Painful inflammation and ulceration of the mouth and digestive tract, often caused by chemotherapy or radiotherapy.
  • Neuropathy — Nerve damage causing tingling, numbness, or pain, usually in the hands and feet. A common chemotherapy side effect.
  • Lymphoedema — Swelling caused by a build-up of lymph fluid, often after lymph node removal or radiotherapy.
  • Ascites — Fluid build-up in the abdominal cavity, causing distension and discomfort. Associated with liver disease and some cancers.
💡 Tip: If a term in your letters or clinic notes is not listed here, ask your GP, specialist nurse, or clinical team to explain it — you are always entitled to a clear explanation of any medical terminology used in your care.

Section 13 — Stoma Care

If you have a stoma, this section records the details of your stoma and your current care routine. It is important information for any nurse or doctor who needs to look after you — especially if you are admitted to a hospital that doesn't know you.
  • StomaA surgically created opening on the abdomen that allows waste to exit the body into a bag. The type depends on which part of the bowel is brought to the surface.
  • ColostomyAn opening from the large bowel (colon). Output is typically formed or semi-formed stool.
  • IleostomyAn opening from the small bowel (ileum). Output is liquid to porridge-like, and higher in volume. High output ileostomies carry a dehydration risk.
  • JejunostomyAn opening from the jejunum (upper small bowel). Very high liquid output — often requires IV fluids or TPN alongside it.
  • Baseplate / FlangeThe adhesive part of the stoma bag system that sticks to the skin around the stoma. It comes in different sizes (cut-to-fit or pre-cut).
  • Bag typeOne-piece (bag and baseplate together) or two-piece (baseplate and bag are separate). Record which type you use and the product name so nursing staff can source the right supplies.
  • Stoma nurse (CNS)A specialist nurse trained in stoma care. They are your first point of contact for any problems with your stoma or appliance.
If you're admitted to hospital, let the ward team know your stoma size and product names straight away — wards may not stock your exact products and need time to order them.

Battle Plan

The Battle Plan is your personal weekly wellbeing ritual — three power days, three simple questions, and one win to celebrate. It's designed for people living with complex health conditions who know that mental strength is just as important as physical care.
  • 💪 Motivation MondayStart the week with intention. Set one goal — small, achievable, yours. It could be anything from drinking enough water to calling a friend. It counts.
  • 🌿 Well-Being WednesdayA mid-week check-in. How are you really doing? Focus on self-care beyond the medical routine — a hobby, mindfulness, something that nourishes you.
  • 🕊️ Fly-High FridayEnd the week by looking up. Celebrate what you achieved. Reflect on what lifted your spirit. Remind yourself that life — even with a complex condition — is still worth living to the fullest.
  • My goal or intentionKeep it small and specific. "Walk to the end of the road" beats "get fit". The Battle Plan is about momentum, not perfection.
  • One thing I'm grateful forGratitude has real, proven benefits for mental health. It doesn't need to be big — a warm cup of tea counts.
  • My win of the weekYou showed up. That is always a win. Record it. Over time, this log becomes proof of your resilience — something powerful to look back on when things are hard.
  • Your Journey So FarEvery saved entry appears in your log. Click any row to view the full details of that week.
  • Support & SignpostingIf you are struggling, this section links to crisis support services and charities who can help. You are never alone.
You don't need to fill in every week or every day. The Battle Plan works whenever you use it. Even one entry a month is one more moment of self-reflection than most people manage. Be proud of every entry you make.

Section 16 — COPD & Sleep Support

This section covers respiratory (breathing) conditions and sleep-related breathing disorders. If you use oxygen, a nebuliser, or a breathing machine at home, record the details here.
  • COPD (Chronic Obstructive Pulmonary Disease)A long-term lung condition that makes breathing difficult. Caused mainly by smoking. Includes emphysema and chronic bronchitis. Managed with inhalers, pulmonary rehab, and sometimes oxygen.
  • Oxygen therapyPrescribed supplemental oxygen used at home. Record your prescribed flow rate (e.g. "2 litres per minute"), how many hours per day, and whether it's a concentrator or cylinder.
  • NebuliserA device that turns liquid medicine into a fine mist to inhale — used for bronchodilators or saline. Record which medicines you nebulise and how often.
  • Sleep apnoeaA condition where breathing repeatedly stops during sleep. Can cause poor sleep, tiredness, and long-term heart and blood pressure problems.
  • CPAP / BiPAPBreathing support machines used during sleep. CPAP (Continuous Positive Airway Pressure) is most common for sleep apnoea. BiPAP gives different pressures for breathing in and out. Record your machine settings if you know them.
  • Insomnia (Chronic)Persistent difficulty falling asleep, staying asleep, or waking too early — most nights, for 3 months or more. Record your insomnia type, severity, medications, and any CBT-I treatment you are receiving. Tick the Insomnia panel in the condition selector to unlock this record.
  • CBT-I (Cognitive Behavioural Therapy for Insomnia)The recommended first-line treatment for chronic insomnia — more effective than sleeping tablets in the long run. Available via Sleepio (NHS-funded in some areas), IAPT services, or specialist sleep clinics.
  • NarcolepsyA neurological condition causing excessive daytime sleepiness and sudden sleep attacks. Type 1 involves cataplexy (sudden muscle weakness triggered by emotion). Tick the Narcolepsy panel to record your type, ESS score, DVLA notification status, and medications such as Modafinil, Pitolisant, or Sodium Oxybate.
  • HypersomniaSleeping too much or feeling very sleepy despite adequate night-time sleep. Idiopathic Hypersomnia has no known cause. Kleine-Levin Syndrome (KLS) causes episodes of extreme sleepiness lasting days to weeks. Tick the Hypersomnia panel to record your condition type, episode details, and medications.
  • ESS (Epworth Sleepiness Scale)A simple 8-question scoring tool measuring daytime sleepiness on a scale of 0–24. Score 11+ suggests excessive sleepiness. Your sleep specialist may use this to track your condition over time.
  • Rescue packA pre-prepared course of antibiotics and/or steroids given to you by your GP or respiratory team to take at home if you develop a flare-up, without waiting for an appointment.
If you have narcolepsy you must notify the DVLA. Your driving licence may be suspended until your condition is well controlled — driving without notifying DVLA is a criminal offence.

Section 15 — Women's Health

This section covers health matters that specifically affect women. It is organised into three tabs: General Tracking & Symptoms (everyday tracking, menstrual health, and hormonal symptoms), Clinical Consultations (screening, investigations, and specialist appointments), and Additional Logs (fertility, pregnancy, and specialist health records). Tick only the panels that are relevant to you — each one opens a dedicated record card.
  • General Tracking & Symptoms — Use this tab for day-to-day monitoring: cycle regularity, flow, pain scores, mood, bloating, and related symptoms. Useful for spotting patterns to discuss with your GP or gynaecologist.
  • Menstrual Health — Record your cycle length, flow, pain level, and symptoms. If your periods have stopped unexpectedly (amenorrhoea), or you have very heavy or painful periods, mention it to your GP — these are treatable.
  • Menopause & HRT — Record your menopause status, symptoms (hot flushes, night sweats, mood, sleep, brain fog, joint pain), bone health, and HRT details. Premature ovarian insufficiency (POI) — menopause before age 40 — needs specialist management and is recorded here too.
  • Clinical Consultations — Use this tab for your screening records and specialist appointments: cervical screening (smear), breast health (mammogram, BRCA), and gynaecological history (endometriosis, PCOS, fibroids, adenomyosis, ovarian cysts).
  • Cervical Screening — Record your last smear date, result, and next due date. NHS cervical screening is offered every 3 years (age 25–49) or 5 years (age 50–64). Cervical cancer is largely preventable with regular screening — don't skip it.
  • Breast Health — Record mammogram dates, BRCA gene status, and family history. NHS routine screening is offered every 3 years from age 50–70. If you have a first-degree relative with breast cancer, ask your GP about earlier screening.
  • Additional Logs — Use this tab for fertility and pregnancy records, and specialist health areas including vulval health, sexual health, urinary health, contraception history, and thyroid health.
  • Pregnancy & IVF — Records fertility history, IVF cycles (each attempt has its own row with full outcome details), current pregnancy, scans, antenatal care, and obstetric history.
  • Vulval & Sexual Health — Covers conditions like lichen sclerosus, vulvodynia, vaginismus, STI history, HIV, and PrEP. These conditions are often under-reported — having a documented history helps ensure they are not missed by a new clinician.
  • Urinary & Thyroid Health — UTI history, overactive bladder, kidney investigations, thyroid diagnosis, medication, and blood results. Thyroid conditions significantly affect overall wellbeing and are commonly missed.
💡 Tip: If you have a long-term condition that affects absorption, hormone levels, or bone density, tell your gynaecologist or GP — it may affect your contraception options, fertility, screening needs, and HRT safety.

Section 17 — Men's Health

This section covers health matters that specifically affect men. Tick only the panels that apply to you — each covers a different area of men's health. You can tick as many as you need.
  • Prostate Health — Record your PSA history, prostate diagnoses (BPH, prostatitis, cancer), biopsy results (Gleason score / Grade Group), and treatment. A raised PSA is a starting point for investigation — not a diagnosis on its own. Record the trend over time, not just a single number.
  • Testicular Health — Covers testicular cancer history, orchidectomy (which side, when), prosthesis, varicocele, and hydrocele. Testicular cancer is the most common cancer in men aged 15–49 and is highly treatable when caught early. Check monthly after a warm shower.
  • Sexual Health & Testosterone — Records STI history, HIV status and treatment, testosterone levels (TRT), and erectile dysfunction. Low testosterone (hypogonadism) causes fatigue, low mood, reduced libido, and muscle loss — it is treatable and worth recording.
  • Penile Health — Covers Peyronie's disease (penile curvature), phimosis, balanitis, and urinary symptoms (LUTS). Lower urinary tract symptoms — frequency, weak stream, urgency, getting up at night — are common and should be monitored over time.
  • Hernia — Record hernia type (inguinal, femoral, umbilical), whether it has been repaired, whether mesh was used, and any current symptoms. An untreated hernia that becomes suddenly very painful or cannot be pushed back in requires urgent medical attention.
  • Gout — Records uric acid levels, urate-lowering therapy (allopurinol/febuxostat), gout attack history, triggers, and kidney function. Gout is the most common inflammatory arthritis in men. Keeping uric acid below 360 µmol/L prevents attacks.
  • Haematuria (Blood in Urine) — Records type (visible or non-visible), investigations carried out (cystoscopy, CT urogram), cause if identified, and referral status. Visible blood in urine should always be investigated promptly — it is a red flag symptom.
  • Urinary Health — Covers UTIs, kidney stones, overactive bladder (OAB), lower urinary tract symptoms (LUTS), urinary incontinence (including post-prostatectomy incontinence), and catheter use. UTIs are less common in men but more likely to be complicated — always worth recording and investigating. Record your LUTS symptoms over time to track whether things are getting better or worse.
  • Thyroid Health — Records your thyroid diagnosis (hypothyroidism, Hashimoto's, Graves' disease, nodules), current medication and dose, TSH/T4/T3 blood results, antibodies, and monitoring schedule. Thyroid conditions are less common in men but are often missed — symptoms like persistent fatigue, unexplained weight changes, or low libido can all point to thyroid dysfunction.
💡 Men are statistically less likely to seek help for health problems. If something has changed — a new lump, difficulty urinating, blood in urine, or persistent fatigue — get it checked. Most things are benign, but the ones that aren't are much easier to treat early.

Section 21 — Cancer Care Record

This section helps you keep a complete record of your cancer diagnosis, treatment history, care team, and ongoing monitoring in one place. It is organised into three tabs: My Cancer Type & Details (diagnosis and condition-specific cards), Treatment & Medical Plans (treatments, medications, and clinical trials), and Support & Care Logs (your care team, wellbeing, and side effect diary). It is designed to be shared with any healthcare professional involved in your care.
  • Cancer Type & Stage — Record the type of cancer you have and how far it had spread when first diagnosed. Your oncologist will have told you the stage (I–IV) and grade. If you are unsure, ask your Cancer Nurse Specialist (CNS) — they will be happy to explain.
  • Condition-specific cards — Tick the type of cancer that applies to you and a detailed panel will open. Sex-specific cards (breast, gynaecological, prostate, testicular) are only shown for the relevant sex as set in your Master Record.
  • Treatment History — Use the table to list every treatment you have had, past and present. Include surgery, chemotherapy, radiotherapy, hormone therapy, and any clinical trials. Add a new row for each course of treatment.
  • Tumour Markers — Blood test results your team uses to monitor your cancer. Keep a record of each result with the date — this helps you spot trends over time. Common markers include PSA (prostate), CA-125 (ovarian), and CEA (bowel).
  • Side Effects Diary — Record any side effects from treatment, how severe they are, and how they are being managed. Your team can adjust treatment if side effects are affecting your quality of life — having a written log makes this conversation easier.
  • Care Team — Keep contact details for everyone involved in your cancer care. Your CNS (Cancer Nurse Specialist) is usually the best first point of contact if you have a concern between appointments.
  • Wellbeing — Rate how you are feeling today. This helps your team understand the impact of cancer and treatment on your day-to-day life.
💡 Tip: Bring this section to every oncology or CNS appointment. If your CNS gives you a new result or changes your treatment plan, update it straight away while the details are fresh.
💡 Tip: Each card has an information hub (ℹ️) explaining medical terms in plain English — tap it if something is unfamiliar.

Physiotherapy

This section records your physiotherapy referrals, exercises, and progress. Physiotherapy (physio) helps you regain strength, movement, and function — whether you're recovering from surgery, managing a long-term condition, or building stamina after illness.
  • Referral reason — Why you were referred to physiotherapy. For example: post-surgical rehabilitation, muscle weakness, joint pain, breathing difficulties, or falls prevention.
  • Physiotherapist — The name and contact details of your NHS or private physiotherapist. Useful if a hospital clinician wants to liaise with them.
  • Exercise programme — The specific exercises your physiotherapist has prescribed. Recording these here means you can show any healthcare professional what you are currently doing, especially if you are admitted to hospital.
  • Frequency — How often you do your exercises (e.g. twice daily, three times a week). Consistency is key — your physio will have set this frequency for a reason.
  • Goals — What you and your physiotherapist are working towards. For example: walking without aids, climbing stairs, improving lung capacity.
  • Progress notes — How you're getting on. It's fine to note setbacks as well as improvements — your physiotherapist uses this to adjust your programme.
  • Equipment — Any mobility aids or equipment prescribed as part of your rehab, such as a walking frame, resistance bands, or a TENS machine.
💡 Tip: If you are admitted to hospital, tell the ward team you have an active physiotherapy programme. Ask for a hospital physio review so your exercises continue during your stay.

Breaks & Fractures

This section records any broken bones (fractures) you have experienced, how they were treated, and any ongoing issues. This is particularly important if you have a condition that affects bone density, such as long-term steroid use, TPN, or osteoporosis.
  • Fracture type — The type of break. A stress fracture is a small crack from repeated strain. A fragility fracture happens from a minor fall or knock and usually indicates low bone density. A traumatic fracture is caused by a significant injury.
  • Bone affected — Which bone was broken, and whereabouts on it (e.g. left femur, neck of femur, right radius).
  • DEXA scan — A type of X-ray that measures bone density. Results are reported as a T-score. A score between −1 and −2.5 indicates osteopenia (lower than normal bone density); below −2.5 indicates osteoporosis.
  • Osteopenia / Osteoporosis — Conditions where bones are weaker than normal, increasing fracture risk. Common in people on long-term TPN, steroids, or with malabsorption conditions.
  • Treatment — May include a cast or splint, surgery (such as a metal plate or pin), or a joint replacement. Record what was done and at which hospital.
  • Bisphosphonates — A type of medication (e.g. alendronate, risedronate, zoledronic acid) prescribed to strengthen bones and reduce fracture risk. Record if you are taking these.
  • Calcium / Vitamin D — Supplements commonly prescribed alongside bisphosphonates, or if blood levels are low. Especially important for TPN patients whose nutrition is closely managed.
  • Ongoing issues — Any lasting effects from a fracture, such as reduced range of movement, chronic pain, or hardware (metal plates/screws) in the body that may affect future procedures.
💡 Tip: If you have osteoporosis or a history of fragility fractures, carry a card stating this — it helps paramedics and A&E staff take appropriate precautions if you fall.

Mental Health & Crisis Support

Living with a long-term or complex condition affects mental health as well as physical health. This section helps you record your mental health diagnoses, current support, and — most importantly — your personal crisis plan so that anyone caring for you knows exactly what to do in an emergency.
  • Mental health diagnosis — Any formal diagnosis you have received from a psychiatrist, psychologist, or GP. For example: depression, anxiety, PTSD, bipolar disorder, OCD. You only need to include what you're comfortable sharing.
  • Care coordinator / CPN — A Community Psychiatric Nurse (CPN) or care coordinator is often the main point of contact for people with ongoing mental health needs. Record their name and direct number here.
  • Crisis plan — A written plan, often created with your mental health team, that describes the warning signs that you're struggling, what helps you, and who to contact. If you don't have a formal plan yet, you can write your own version here.
  • Safe messaging — Some people have specific words, phrases, or approaches that help them feel heard and calm during a crisis. Recording these here lets emergency or unfamiliar staff support you more effectively.
  • Psychiatric medication — Medications for mental health conditions such as antidepressants, antipsychotics, mood stabilisers, or anti-anxiety medicines. These should also appear in your Medications section (s5) — cross-referencing helps avoid duplication or missed doses.
  • Psychological therapy — Talking therapies such as CBT (Cognitive Behavioural Therapy), EMDR (for trauma), counselling, or group therapy. Record what you have had and what you're currently receiving.
  • Emergency contacts (mental health) — Separate from your general contact directory. This might include a trusted friend, family member, or the number for your local crisis team or CAMHS (if applicable).
  • NHS 111 — Option 2 — The mental health crisis line available 24/7 via NHS 111. Pressing option 2 connects you to a local mental health crisis team without needing to attend A&E.
  • Samaritans — Free, confidential support 24/7 on 116 123. Available to anyone who is struggling, not only those in immediate crisis.
💡 Tip: Share your crisis plan with one or two trusted people so they know how to support you — and so they can show it to a clinician on your behalf if you're not able to in the moment.

Rare & Complex Diseases

This section holds detailed health records for rare and complex conditions. Tick only the conditions that apply to you at the top — only those panels will expand below. Each condition includes a plain-English information hub followed by a data card for you to fill in. Take this section to every specialist appointment.
  • MEN1 — A rare genetic condition causing tumours in the parathyroid, pancreas, and pituitary glands. Record your mutation, gland status, and annual blood results here.
  • Cystic Fibrosis — Record your CFTR mutation, modulator therapy (e.g. Kaftrio), lung function results, and exacerbation history.
  • MCAS — Log your known triggers and reactions. This helps any A&E team understand your condition quickly in an emergency.
  • POTS / Dysautonomia — Track your lying and standing heart rate and blood pressure. Your specialist may ask for these readings at every clinic visit.
  • Epilepsy — Keep a seizure diary — date, duration, type, and triggers. This is essential for your neurologist to adjust your treatment.
  • Lupus (SLE) — Record your antibody results, organ involvement, and flare history. Take this to every rheumatology appointment.
  • Primary Immunodeficiency — Log your immunoglobulin infusions and significant infections. If you go to A&E with a fever, show this section — it explains why you need urgent treatment.
  • Vasculitis — Record your ANCA result, immunosuppression, and relapses. Regular monitoring (CRP, ANCA, renal function) is essential.
  • Mitochondrial Disease — The emergency protocol in this section is critical. Show it to any clinician before surgery, anaesthesia, or if you are too unwell to eat.
  • Hereditary Angioedema (HAE) — Keep your attack log up to date. The emergency box explains why standard allergy treatments don't work — this could be life-saving.
  • EDS (Ehlers-Danlos Syndrome) — Record your subtype, Beighton score, and co-occurring conditions (POTS, MCAS). Vascular EDS carries specific surgical risks — ensure this is flagged.
  • Marfan Syndrome — Keep your aortic root diameter measurements up to date. If you have sudden severe chest or back pain, call 999 immediately — this could be aortic dissection.
  • Sjögren's Syndrome — Record your antibody status (anti-Ro, anti-La), dry eye and dry mouth severity, and any systemic involvement.
  • APS (Hughes Syndrome) — Log your antibody profile, anticoagulation target, and clotting history. Always carry your anticoagulation details — sudden chest pain, leg swelling, or stroke symptoms require 999.
  • Scleroderma / Systemic Sclerosis — Record your subtype, antibody result (anti-centromere or Scl-70), Raynaud's severity, and any lung involvement.
  • Sarcoidosis — Record which organs are affected and your pulmonary stage. Note any cardiac involvement — this requires specialist monitoring.
  • Myasthenia Gravis — The drug safety notes field is critical. Many common drugs can trigger a crisis. Always declare MG before any new prescription or anaesthesia.
  • Hereditary Haemochromatosis — Track your ferritin and transferrin saturation results, and record your venesection frequency. Target ferritin is below 50 µg/L.
  • Alpha-1 Antitrypsin Deficiency — Record your genotype, lung function (FEV1), liver status, and whether you are receiving augmentation therapy.
  • Porphyria — The drug safety notes field is the most important part of this record. Many medications can trigger a life-threatening attack. Carry this information at all times and show it before any new prescription.
  • Neurofibromatosis — Record your type (NF1 or NF2), specialist centre, and any tumours under monitoring. Sudden growth of a lump or new pain requires urgent investigation.
  • Myositis — Record your antibody type, CK level, lung involvement, and whether a cancer screen has been completed at diagnosis.
  • Multiple System Atrophy (MSA) — Record your subtype (MSA-P or MSA-C), autonomic symptoms, and any non-invasive ventilation or swallowing support. Track lying and standing blood pressure in the autonomic log — postural hypotension is a key management target. Advance care planning should begin early while you can clearly express your wishes.
  • Muscular Dystrophy — Record your type, gene mutation, and current cardiac and respiratory status. Cardiac monitoring is mandatory even if you feel well — the heart muscle can be affected silently. Keep your FVC (lung function) percentage up to date so your clinical team can act promptly if it falls.
  • Huntington's Disease — Record your CAG repeat length, clinical stage, and psychiatric medications. If you are at risk but have not been tested, this section can still help you record family history and team contacts. Use the annual review log to track motor and functional scores over time.
  • Kawasaki Disease — Cardiac Sequelae — Adults who had Kawasaki Disease as children may have coronary artery aneurysms that require lifelong follow-up. Record your aneurysm history, antiplatelet or anticoagulation treatment, and echo results. If you attend A&E with chest pain, always mention your Kawasaki history — it may not be in adult records.
  • Mastocytosis / Systemic Mastocytosis — Record your tryptase baseline, KIT mutation status, and current antihistamine and mast cell stabiliser regimen. Use the reaction log to identify triggers. Always carry your EpiPen if prescribed, and inform all clinicians and surgeons of your diagnosis before any procedure — anaesthesia risk is significantly elevated.
  • Behçet's Disease — Record your manifestations (oral ulcers, genital ulcers, eye involvement, skin, neurological, or vascular). Use the flare log to track episodes and the eye review log for ophthalmology appointments. Eye emergency: uveitis in Behçet's can cause permanent vision loss within hours — seek urgent ophthalmology if you develop eye redness, floaters, blurred vision, or eye pain.
  • Down's Syndrome — Record your trisomy type, cardiac history, thyroid status, hearing and vision. Annual health checks with your GP are essential and you are entitled to them on the NHS. Keep your health check log up to date — thyroid, weight, blood pressure, and hearing should all be checked every year.
  • Aneurysm (Aortic / Cerebral) — Record your aneurysm type, location, size, and surveillance imaging dates. Keep the next imaging due date up to date — missing a scan could mean missing growth that needs treatment. If you ever experience sudden severe tearing chest/back pain or the worst headache of your life, call 999 immediately.
  • Appendicitis (Post-operative) — Record your surgery date, procedure, complications, and any ongoing adhesion symptoms. If you had a perforated appendix or complications, keep this section updated for any future A&E or surgical consultations.
  • Xeroderma Pigmentosum (XP) — Record your complementation group, neurological involvement, UV protection measures, and skin surveillance dates. Keep your skin cancer screen log up to date. Provide the information hub's UV safety notes to any new clinician — many will be unfamiliar with XP.
  • Wilson's Disease — Record your copper monitoring results (serum copper, ceruloplasmin, 24hr urine copper) and current medication. Never stop treatment without specialist advice — copper will re-accumulate. Dietary copper restriction is especially important in the first year.
  • Haemophilia A & B — Fill in the Emergency Treatment Plan field — this is the most important part of this record. A&E staff may not be familiar with haemophilia; this tells them exactly which product to use, at what dose, and who to call. Always carry your haemophilia treatment card. Never take aspirin or ibuprofen.
Tip: Tick only the conditions that apply to you. You can tick more than one. Each panel saves with the main Save button at the bottom of the section.

Weight & BMI Tracker

Track your weight over time and monitor trends that matter to your clinical team. This section is for anyone whose weight needs monitoring — not just for weight loss. Gradual weight changes — up or down — are often the first sign of something changing in your health.
  • Weight Log — Add a new row each time you weigh yourself. The date auto-fills to today, and your BMI calculates automatically if your height is saved in Section 1. Log as often or as rarely as suits your needs — once a week is a good habit for most people.
  • BMI (Body Mass Index) — your weight in kg divided by your height in metres squared. The healthy range is 18.5–24.9. BMI is a rough guide only — it does not account for muscle mass, fluid retention, or bone density, and has limitations for some ethnic groups.
  • Healthy weight range — shown automatically based on your saved height. This is the weight range that corresponds to a BMI of 18.5–24.9 for your height. It is a guide, not a target — your clinician may set a different goal based on your condition.
  • Fluid retention (oedema) — when the body holds excess water, causing swelling and sudden weight gain. A gain of 2 kg or more in 48 hours can be a clinical red flag — common in heart failure, kidney disease, and some medications. Always report sudden rapid weight gain to your clinical team.
  • Unintended weight loss — gradual loss without trying is always worth reporting to your GP. It can be an early sign of cancer, bowel conditions, malabsorption, or depression. Use the Notes column to record if a change was intentional or not.
  • Weight Plan — record a weight management goal: target weight, target date, reason (e.g. pre-surgery, dietitian goal), and your plan. When the plan is complete, use Archive Plan to save it to the history log.
  • Trend Summary — shows your last recorded weight, highest and lowest in your log, and total change from your starting weight. Read-only — updates automatically as you add entries.
💡 For consistent readings: weigh yourself at the same time each day (morning, after going to the toilet, before eating), on the same scales, in similar clothing. Small day-to-day changes are normal — look for trends over weeks, not individual readings.

Calendar Hub

The Calendar Hub gives you a single month view showing everything that happened on each day across the whole passport — appointments, homecare visits, blood glucose readings, daily log entries, and personal notes. Tap any day to see the detail.
  • Blue dot — An appointment was recorded on this day (from the Appointments section).
  • Orange dot — A homecare nurse visit was recorded on this day.
  • Green dot — A blood glucose reading or daily clinical log entry exists for this day.
  • Red dot — A blood glucose reading was out of range (below 3.9 or above 12.0 mmol/L) on this day.
  • Purple dot — A personal note was added to this day.
  • Personal Note — Tap any day and use the Personal Note box at the bottom to record a birthday, reminder, or any non-medical note. These are just for you.
  • Navigation — Use the left and right arrows to move between months. The Today button jumps back to the current month.
Tip: The Calendar Hub doesn't have its own data to fill in — it reads automatically from your other sections. Keep your appointments, visits, and daily logs up to date and the calendar will always be accurate.

Patient Summary & Export

This section lets you generate a clinical summary of your passport to share with any doctor, nurse, or paramedic. You choose what to include, set the time period, and produce a formatted report as a PDF, Word document, or QR code.
  • Report recipient — Choose a preset that automatically selects the right sections. Emergency summary includes only the most critical information. GP includes history and medications. Hospital handover includes everything a ward team needs. Full report includes all sections.
  • Date range — Controls how much of your daily log and appointment history is included. For a GP visit, "This month" or "Last 3 months" is usually enough. For a hospital admission, "All time" gives the full picture.
  • Include in report — Fine-tune exactly which sections appear. Sections where you haven't entered any data are automatically unchecked and dimmed. Use Select All / Deselect All to quickly change everything.
  • Preview — Shows what the report will look like before you print or download it. Always preview first to check the content looks right.
  • Print — Opens a clean, printable version of the summary in a new tab. Use your browser's print function (Ctrl+P / Cmd+P) to print or save as PDF.
  • Download PDF — Creates a PDF file directly in your downloads folder.
  • Download Word — Creates a .doc file you can open in Word, Google Docs, or any word processor to edit before sharing.
  • QR Code — Generates a QR code containing your key health data. Emergency only fits on a small QR; Full passport creates a larger code best printed at A5 or bigger. Any QR scanner app can read it. The data is self-contained — no internet needed to scan it.
  • Download QR as PNG — Saves the QR code image so you can print it, add it to a lanyard card, or share it digitally.
⚠️ The QR code contains your real health data. Treat printed QR codes as confidential medical documents — don't post them publicly online.

Diabetes Management

Section 23 is your complete diabetes record — covering your diagnosis, insulin and devices, blood glucose targets, HbA1c log, hypo management plan, annual review tracker, complications history, and foot care. It is designed for Type 1, Type 2, LADA, MODY, and all other diabetes types.

The three tabs

  • My Diabetes Profile — your diagnosis details, care team contacts, insulin types and devices, and any oral or injectable medications you take.
  • Monitoring & Targets — your personal blood glucose targets, HbA1c results log, and your hypo management plan including GlucaGen/Baqsimi location and sick day rules.
  • Complications & Screening — your annual review tracker, complications history (eyes, nerves, kidneys, heart, feet), and podiatry contact details.

Key terms explained

  • HbA1c — a blood test that shows your average blood glucose over the last 2–3 months. Measured in mmol/mol (UK standard). Lower is generally better, but your target should be agreed with your diabetes team.
  • CGM — Continuous Glucose Monitor. A sensor worn on the skin that reads blood glucose every few minutes without finger pricks (e.g. FreeStyle Libre, Dexcom).
  • Basal insulin — long-acting background insulin taken once or twice a day to keep blood glucose stable between meals.
  • Bolus insulin — fast-acting insulin taken with meals or to correct a high blood glucose reading.
  • Hypo — low blood glucose (usually below 4.0 mmol/L). Can cause shakiness, sweating, confusion, and is dangerous if untreated.
  • DKA (Diabetic Ketoacidosis) — a serious complication mainly in Type 1 where the body produces dangerous levels of ketones. Symptoms include rapid breathing, vomiting, fruity breath, and confusion. Always go to A&E.
  • GlucaGen / Baqsimi — emergency glucagon kits prescribed to people at risk of severe hypos. GlucaGen is an injection; Baqsimi is a nasal powder. Others can use these if you are unconscious — make sure family and carers know where they are kept.
  • eGFR / ACR — kidney function tests checked as part of the annual diabetes review. eGFR measures how well your kidneys filter blood; ACR detects protein leaking into urine (an early sign of kidney involvement).
  • Time in Range — the percentage of time your CGM reading stays within your target range (usually 3.9–10 mmol/L). A target of 70% or above is recommended for most people.

Tips for filling this in

  • Insulin users — fill in the Insulin & Devices card even if your doses change frequently. Write your current usual doses and note any correction factors so A&E staff understand your regimen.
  • Hypo plan — always fill this in. If you are ever brought in unconscious, staff need to know whether you have GlucaGen, where it is, and who to call.
  • Annual review tracker — use the table to log each item as it is completed. This helps you track what is overdue and gives clinicians a summary at a glance.
  • DVLA rules — if you take insulin, you are legally required to notify the DVLA. This section includes a reminder but always check the latest rules at gov.uk/diabetes-driving.
Fill in your hypo management plan carefully — it could save your life if you are admitted to hospital unconscious. Write where your GlucaGen is kept and who should be called.

Section 24 — Heart Conditions

This section covers any heart condition — from AF and heart failure to coronary artery disease, cardiomyopathy, and cardiac devices. It gives you and your clinical team a complete picture of your cardiac history in one place.
  • Tab 1 — My Heart Conditions & Medications: Record your primary heart condition, NYHA class (how much symptoms limit you), AF type, and ejection fraction. The anticoagulation card covers blood thinners (warfarin, apixaban, rivaroxaban etc.) and antiplatelet therapy. Add all cardiac medications using the medication table.
  • Tab 2 — Monitoring & Investigations: Log your home and clinic blood pressure targets, build up your ECG and rhythm monitoring history (Holters, loop recorders, stress tests), record echo and cardiac imaging results with EF%, and track cardiac blood tests (NT-proBNP, BNP, troponin, cholesterol).
  • Tab 3 — Devices & Procedures: Record your pacemaker, ICD, CRT device or loop recorder — including battery status and whether it is MRI conditional. Log all cardiac procedures (angiograms, PCI stents, CABG, cardioversions, ablations). Track your cardiac rehabilitation phase and exercise capacity.
  • NYHA Class: New York Heart Association classification of heart failure severity. Class I = no symptoms with ordinary activity. Class IV = symptoms at rest. Used to track how much your heart condition limits daily life.
  • Ejection Fraction (EF): The percentage of blood pumped out of the left ventricle with each heartbeat. Normal is above 55%. Below 40% is classed as HFrEF (heart failure with reduced ejection fraction).
  • AF (Atrial Fibrillation): An irregular heart rhythm where the upper chambers (atria) beat chaotically. Paroxysmal AF comes and goes; persistent AF lasts more than 7 days; permanent AF is ongoing.
  • NT-proBNP / BNP: Blood tests that rise when the heart is under stress. Used to diagnose and monitor heart failure. High levels suggest the heart is working harder than it should.
  • MRI conditional: Some pacemakers and ICDs are safe to have MRI scans with (under specific conditions). Always tell the MRI team about your device — they need to check the model number before scanning.
  • CHA₂DS₂-VASc score: A scoring system used in AF to estimate stroke risk and decide whether anticoagulation is needed. A score of 2 or more in men (3+ in women) usually means anticoagulation is recommended.
💡 Always carry a card or note confirming your cardiac device model number and whether it is MRI conditional. This is critical information in any emergency.

Section 25 — Kidney & Renal Health

This section is for anyone with a kidney condition — from early-stage CKD to dialysis and transplant. It keeps your kidney health records, monitoring results, and treatment details all in one place for any clinical appointment.
  • Tab 1 — My Kidney Condition: Record your diagnosis, CKD stage, transplant details (if applicable), and your fluid and dietary restrictions. Kidney disease often requires careful management of what you eat and drink — this tab keeps those details at your fingertips.
  • Tab 2 — Monitoring & Results: Build up your eGFR and creatinine trend over time — this is the most important record for tracking kidney disease progression. Also log blood results, urine tests, and blood pressure monitoring.
  • Tab 3 — Treatment & Procedures: Record your dialysis details (type, frequency, access), log renal procedures (biopsies, scans, stent insertions), and track specialist renal medications (phosphate binders, EPO, vitamin D supplements).
  • eGFR: Estimated Glomerular Filtration Rate — a measure of how well your kidneys are filtering blood, expressed in ml/min/1.73m². Used to stage CKD. A falling eGFR over time indicates progression.
  • Creatinine: A waste product filtered by the kidneys. A rising creatinine usually means kidneys are working less well. Normal varies by age, sex, and muscle mass.
  • ACR (Albumin:Creatinine Ratio): A urine test measuring protein leakage from the kidneys. Higher ACR indicates more kidney damage. Used alongside eGFR to stage CKD.
  • CKD Stages: Stage 1–2 = early (kidney damage but near-normal function); Stage 3 = moderate reduction; Stage 4 = severe reduction; Stage 5 = kidney failure (dialysis or transplant needed).
  • Haemodialysis (HD): Blood is filtered through a machine 3–6 times a week, typically for 3–5 hours per session. Can be done in a dialysis unit or at home.
  • Peritoneal Dialysis (PD): Fluid is passed into the abdominal cavity through a catheter and drains out, filtering waste. Can be done at home — often overnight with an automated machine (APD).
  • AVF (Arteriovenous Fistula): A surgically created connection between an artery and vein in the arm, used as dialysis access. The preferred access type — lasts longer and has fewer infection risks than a line.
💡 Bring your eGFR trend log to every nephrology appointment. A single eGFR reading means little — the trend over months and years is what your team uses to make decisions.

Section 26 — Stroke & Neurological Health

This section covers stroke, TIA, and any neurological condition — from MS and Parkinson's to epilepsy, dementia, and functional neurological disorders. It gives clinicians a complete picture of your neurological history across four focused tabs.
  • Tab 1 — My Neurological Conditions: Record your primary diagnosis, current status, epilepsy type or MS subtype (if applicable), neurologist details, and any additional neurological conditions in the log table.
  • Tab 2 — Stroke & TIA Record: Log each stroke or TIA event — type, side affected, whether thrombolysis or thrombectomy was given, and outcome. Also record your stroke risk factors and secondary prevention plan (antiplatelet, anticoagulation, statin).
  • Tab 3 — Medications & Investigations: Track all neurological medications (Parkinson's, epilepsy, MS disease-modifying therapies, neuropathic pain, etc.) and build up your investigations log (MRI brain, EEG, nerve conduction studies, lumbar puncture).
  • Tab 4 — Rehabilitation & Daily Living: Record your rehab team involvement (physio, OT, SALT), functional status using the Rankin Scale, communication and mobility, driving and DVLA status, and your care package.
  • TIA: Transient Ischaemic Attack — a "mini stroke" where symptoms resolve within 24 hours (usually minutes). A TIA is a medical emergency — same-day assessment is required. High risk of full stroke in following days.
  • mRS (Modified Rankin Scale): A 0–6 scale measuring disability after stroke. 0 = no symptoms; 6 = death. Used to track recovery over time and compare outcomes.
  • Thrombolysis: Clot-busting drug (alteplase or tenecteplase) given by IV within 4.5 hours of ischaemic stroke onset to dissolve the clot.
  • Thrombectomy: A procedure where a catheter is passed into the blocked artery and the clot is mechanically removed. Can be done up to 24 hours after onset in selected patients.
  • Aphasia: Difficulty producing or understanding language after brain injury. Expressive aphasia = difficulty speaking; receptive aphasia = difficulty understanding speech.
  • DVLA rules: After a stroke or TIA you must not drive for at least 1 month (car) or 1 year (HGV/bus). Epilepsy: you must be seizure-free for 1 year before driving. Always notify DVLA — failure to do so is a criminal offence.
💡 Bring your stroke event log and current medication list to every neurology appointment. If you have epilepsy, note the date of your last seizure — this is the first thing your neurologist will ask.

Section 27 — Liver Health

Section 27 is your complete liver health record. It covers your diagnosis, alcohol history, transplant details, blood test logs (including LFTs), imaging, varices, medications, procedures, and hepatic encephalopathy. Bring this section to every hepatology appointment.
  • Tab 1 — My Liver Condition Record your diagnosis, current status, cirrhosis staging, and transplant details if relevant.
  • Tab 2 — Monitoring & Results Log your liver function tests (LFTs) over time, additional bloods, imaging results, and varices / portal hypertension status.
  • Tab 3 — Treatment & Procedures Record your liver-specific medications, procedures (paracentesis, TIPSS, banding), and hepatic encephalopathy history.
  • ALT / AST Liver enzymes. Raised levels mean liver cell damage. They're measured in U/L (units per litre).
  • ALP / GGT Raised in bile duct problems or alcohol use. Important for monitoring PBC and PSC.
  • Bilirubin Raised bilirubin causes jaundice — yellowing of the skin and eyes.
  • Albumin Made by the liver — low albumin means the liver is struggling.
  • INR How well your blood clots. A raised INR means poor liver function and a higher bleeding risk.
  • MELD score Predicts 3-month survival in liver disease. Used to prioritise transplant lists. Scores range from 6 to 40.
  • Child-Pugh Grades cirrhosis severity as A (mild), B (moderate), or C (severe / decompensated).
  • FibroScan Measures liver stiffness in kPa. Higher = more fibrosis. A non-invasive alternative to biopsy.
  • Varices Enlarged veins in the oesophagus or stomach. They can burst and bleed severely. Treated with banding or beta-blockers.
  • Ascites Fluid in the abdomen from high liver pressure and low albumin. Managed with diuretics or paracentesis.
  • Hepatic encephalopathy (HE) Confusion caused by toxins the liver cannot clear. Lactulose and rifaximin help prevent it.
  • SVR Sustained Virological Response — means Hepatitis C has been cured by antiviral treatment.
  • TIPSS A stent connecting blood vessels in the liver to reduce pressure. Used for refractory ascites or variceal bleeding.
💡 Bring a printout of your LFT trend to every hepatology appointment — doctors want to see whether your results are improving, stable, or worsening over time. A single result means little; the trend tells the story.

Allergies & Anaphylaxis

This section records all your allergies, your emergency action plan, and any desensitisation treatment you are having. It is one of the most important sections to keep up to date — share it with any new clinician or carry it with you.
  • Tab 1 — My Allergies: Log each allergen with its severity, how the reaction was confirmed, and your reaction history. Use the Allergy Log table to add each allergen separately.
  • Tab 2 — Emergency Plan & EpiPen: Record your EpiPen device details (brand, expiry, where kept) and write your personal anaphylaxis action plan in plain English. This is what carers, teachers, and emergency staff need to know.
  • Tab 3 — Desensitisation & Specialist: If you are having allergy immunotherapy (e.g. grass pollen injections, oral immunotherapy), log each programme and your specialist appointments here.
  • Severity levels: Mild = local skin reaction only. Moderate = systemic (more than one area). Severe = risk of anaphylaxis. Anaphylaxis = life-threatening, requires adrenaline immediately.
  • EpiPen expiry: Check your device expiry dates regularly and update them here. Devices should be replaced before they expire — ask your GP or pharmacist.
  • MedicAlert bracelet: If you are at risk of anaphylaxis, wearing a MedicAlert bracelet means emergency staff will know even if you cannot speak.
Always carry two EpiPens if prescribed — anaphylaxis can sometimes return (a biphasic reaction) after the first dose wears off. After using an EpiPen, always call 999 even if you feel better.

Carer Information

This section records who your carers are, what care they provide, and any respite or support arrangements. Having this information in your passport means clinicians and emergency services immediately know who to contact, what support you depend on at home, and what would need to be arranged if you were admitted to hospital.
  • Named Carers tab — Add your primary carer and any backup carers. Include name, relationship, phone number, how many hours a week they care for you, and whether they have a DBS check. Having backup carer details here is crucial — if your main carer is ill, the hospital needs to know who else can step in.
  • Care Schedule tab — Record the level of care you need (e.g. assistance with washing, mobility, medications) and the specific tasks your carer carries out. This helps ward staff understand what you will need during an admission — and what level of care is required before you can safely be discharged.
  • Services tab — Record any paid care agencies, social services packages, community support workers, or voluntary organisations involved in your care. Include contact numbers so hospital discharge teams can coordinate directly.
  • Carer's Assessment — Unpaid carers have the legal right to a free carer's assessment from their local council, regardless of how many hours they care. This can unlock support services, equipment, and respite funding. Ask your GP or social worker to refer, or contact your local council directly.
  • Carer's Allowance — If your carer spends 35 or more hours a week caring for you, they may be entitled to Carer's Allowance (currently £81.90/week). They cannot claim it if they earn more than £151/week after deductions, or if they already receive certain other benefits. Check eligibility at gov.uk/carers-allowance.
  • Young carers — If a child or young person under 18 is involved in your care, they are entitled to a young carer's assessment from the local authority. Schools and GPs can refer, or contact your local council.
  • Respite care — Temporary care arranged to give your main carer a break. Can range from a few hours a week to a short residential stay. Record any current respite arrangements here so hospital staff know what is already in place.
  • Carer's own health — Record if your carer has their own health conditions that affect their ability to care. A clinician managing a hospital discharge needs to know if the person caring for you at home has limitations too.
💡 If your carer becomes ill or unavailable suddenly, having emergency respite contacts recorded here can prevent a crisis admission. Always fill in at least one backup contact — even a family member who can be called in an emergency.

End of Life & DNACPR

This section records your end-of-life wishes, legal documents, and medical decisions so that doctors, nurses, and paramedics can respect your preferences even if you cannot communicate them yourself. Filling this in can be difficult — but it is one of the most important things you can do for yourself and your family.
  • My Wishes tab — Record where you would like to die (home, hospice, hospital), whether you have an Advance Care Plan, and who holds Lasting Power of Attorney for your health. These are your preferences — they help clinicians honour what matters to you.
  • Preferred Place of Death — Most people prefer to die at home or in a hospice, but without a documented plan this often does not happen. Recording this — and telling your GP — makes a real difference. Your GP can add a flag to your NHS Summary Care Record.
  • Advance Care Plan (ACP) — A document you write with your healthcare team that records your wishes about future care. It is not legally binding, but it is taken very seriously by clinicians. It is different from an Advance Decision to Refuse Treatment (ADRT).
  • Lasting Power of Attorney (LPA) — A legal document that allows a person you trust (your "attorney") to make decisions about your health and welfare if you lose mental capacity. You must make your LPA while you still have capacity — it is too late once you have lost it. Register your LPA with the Office of the Public Guardian (OPG).
  • DNACPR / ReSPECT tab — A DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) notice means that CPR should not be attempted if your heart stops. This is a medical decision made by a doctor, ideally with your agreement. It does not mean "do not treat" — all other care continues. ReSPECT is the NHS form that has replaced DNACPR in most trusts; it records a wider range of emergency treatment preferences.
  • ADRT (Advance Decision to Refuse Treatment) — A legally binding document where you refuse a specific medical treatment in a specific future situation. An ADRT to refuse life-sustaining treatment must be written, signed, and witnessed. Clinicians must follow a valid ADRT.
  • Palliative & Organ Donation tab — Record your palliative care team, organ donation preferences, and funeral wishes. In England, the NHS now uses an "opt-out" system — everyone is considered a donor unless they have opted out or are in an excluded group. Check your status at www.organdonation.nhs.uk.
💡 Tip: Tell your family and GP about all of these documents and where they are kept. A DNACPR or LPA is only useful if the right person can find it quickly. Keep the pink DNACPR form somewhere visible — many people put it on the fridge.

Counselling & Therapy

This section records your current and past psychological therapy or counselling — who your therapist is, what kind of therapy you are having, your goals, and how you are progressing. Having this in your passport helps any healthcare professional understand the psychological support you are receiving.
  • Current Therapy tab — Record your therapist's name, their role, the type of therapy, how often you meet, and your current status. Also record your crisis support contacts so that they are always to hand.
  • CBT (Cognitive Behavioural Therapy) — A structured, evidence-based therapy that helps you identify and change unhelpful thoughts and behaviours. Recommended by NICE for depression, anxiety, OCD, PTSD, and more. Usually 8–20 sessions.
  • DBT (Dialectical Behaviour Therapy) — Focuses on emotional regulation, distress tolerance, mindfulness, and interpersonal skills. Often used for borderline personality disorder (BPD) and complex trauma.
  • EMDR (Eye Movement Desensitisation and Reprocessing) — An evidence-based therapy for trauma and PTSD. Uses bilateral stimulation (eye movements or tapping) while you recall distressing memories, to help the brain process them differently.
  • IAPT — NHS Improving Access to Psychological Therapies. Provides free CBT and guided self-help. You can self-refer without a GP referral at www.nhs.uk/mental-health.
  • Session Log tab — Record each session, your mood before and after, and key themes. This helps you spot patterns and prepares you for review appointments. Mood is scored 0 (worst) to 10 (best).
  • Goals & Progress tab — Write down what you hope to achieve through therapy, set specific goals, and track your progress. If your therapist uses a formal outcome measure (e.g. PHQ-9 for depression, GAD-7 for anxiety), record your scores here to see the trend over time.
  • Crisis support — Record your crisis plan and out-of-hours contacts so you or a clinician can find them quickly. Samaritans: 116 123 (24/7, free). NHS 111 option 2 for mental health crisis (most areas).
💡 Tip: Share this section with your GP so they know you are receiving therapy and who your therapist is. This prevents duplicate referrals and helps your GP and therapist coordinate your care.

Common & Seasonal Health

This section helps you track common illnesses like colds, flu, ear infections, and stomach bugs — and tells you when to call 999, NHS 111, or your GP. Use the Episode Log to record patterns you can show your doctor.
  • Episode Log — Record each illness: what it was, how severe, how long it lasted, how you managed it, and whether you recovered fully. Useful for spotting recurring patterns (e.g. 6 UTIs in a year) to discuss with your GP.
  • Infections & Breathing tab — Info cards for the most common infections: cold, flu, sore throat, sinusitis, ear infections, and conjunctivitis. Each card has a colour-coded guide: what to do at home, when to call 111, and when to call 999.
  • Gut, Head & Other tab — Info cards for gastroenteritis, headaches (tension, cluster, migraine), cold sores, mouth ulcers, toothache, UTIs, and fever management.
  • Quick Help Guide — At the bottom of the section, a 3-column reference: Call 999 / Call NHS 111 / See Your GP — for any common illness when you are unsure what to do.
  • Acute Medication Notes — A freetext area to note antibiotics, antivirals, or other acute medicines you have taken, so you can report this accurately at a GP or hospital appointment.
💡 If you are immunocompromised — for example if you are on chemotherapy, steroids, immunosuppressants, or have a condition affecting your immune system — always seek medical advice earlier than you normally would for any common illness. What clears up in a few days for most people can escalate quickly for you.

Respiratory Health

This section is your complete respiratory health record — covering your diagnosis, asthma action plan, peak flow and spirometry logs, exacerbation history, inhalers, and your respiratory team. Share it at every GP or hospital appointment where breathing is discussed.
  • Tab 1 — My Respiratory Condition Record your diagnosis, severity, status, smoker history, known triggers, and your personal asthma action plan with your three peak flow zones (green, yellow, red).
  • Tab 2 — Monitoring & Tests Log your peak flow readings over time, spirometry results from lung function tests, and any exacerbation or flare-up episodes.
  • Tab 3 — Medications & Management Record all your inhalers, any biologic therapy, whether you use a spacer or nebuliser, and details of your respiratory team.
  • Personal Best Peak Flow Your own highest recorded peak flow when you are well. All three zones in your action plan are calculated as percentages of this. Ask your asthma nurse if you are unsure what it is.
  • FEV1 The amount of air you can breathe out in one second. Lower values indicate airway narrowing or obstruction.
  • FVC Total air breathed out after a full breath in. Used alongside FEV1 to diagnose obstructive vs restrictive patterns.
  • Reversibility If your FEV1 improves significantly after a reliever inhaler, this suggests asthma. If it does not improve, it may point to a different diagnosis such as COPD.
  • SABA (rescue inhaler) Short-Acting Beta-Agonist — your reliever inhaler (e.g. Salbutamol/Ventolin). Use it when symptoms occur.
  • ICS (preventer inhaler) Inhaled Corticosteroid — reduces inflammation. Must be taken every day even when you feel well.
  • Biologic therapy Injections given every 4–8 weeks that target specific inflammatory pathways in severe asthma. Requires specialist approval.
💡 Take photos of your inhaler labels and add the exact drug name and dose here. Many inhalers look similar — clinicians need the exact brand and generic name to check for interactions.

Digestive & GI Health

This section records your gastrointestinal condition, surgical history, symptom and flare logs, endoscopy results, blood results, and all your GI medications and team contacts. It is especially valuable during flares, hospital admissions, and biologic infusion appointments.
  • Tab 1 — My GI Condition Record your primary diagnosis, Crohn's/UC subtype details, disease activity, coeliac diagnosis and diet, known food triggers, and any GI surgery history.
  • Tab 2 — Monitoring & Symptoms Log flare episodes with triggers and treatment changes, endoscopy and colonoscopy results, and blood test results over time (including calprotectin and CRP).
  • Tab 3 — Medications & Management Record all your GI medications (5-ASAs, immunosuppressants, biologics, PPIs), dietary restrictions, your IBD team contact details, and dietary notes from your dietitian.
  • IBD Inflammatory Bowel Disease — umbrella term for Crohn's Disease and Ulcerative Colitis. These are immune-mediated conditions causing gut inflammation, not the same as IBS.
  • IBS Irritable Bowel Syndrome — a functional gut disorder. No inflammation is visible on tests. Important distinction from IBD.
  • Calprotectin A stool test measuring gut inflammation. High levels suggest active IBD rather than IBS. Usually measured in µg/g.
  • Biologic infusion schedule Record how frequently you attend for infusions (e.g. every 8 weeks for infliximab). Missing an infusion can trigger a flare or antibody formation.
  • Remission When IBD symptoms are absent or minimal and inflammation is controlled. The treatment goal.
  • Flare When IBD becomes active again — symptoms worsen and inflammation rises. Contact your IBD nurse early.
  • Stricture / Fistula Complications of Crohn's. Stricture = narrowing of the bowel. Fistula = abnormal channel between bowel and another structure. Both may need surgery.
💡 If you have an IBD nurse helpline number, add it to your GI Team card. Calling the IBD nurse early during a flare often prevents hospital admission — they can escalate your steroid dose or arrange urgent investigations without you needing to go to A&E.

Musculoskeletal & Pain

This section records your musculoskeletal diagnosis, pain and flare logs, physiotherapy, and all your pain medications and interventions. It is especially useful in A&E, pain clinic appointments, and rheumatology reviews — giving clinicians an instant picture of your pain type, pattern, and what treatments you have already tried.
  • Tab 1 — My Condition Record your primary diagnosis (e.g. osteoarthritis, fibromyalgia), severity, pain type, pain pattern, mobility impact, affected joints, and investigation results including X-rays, MRI, DEXA, and blood markers.
  • Tab 2 — Pain & Monitoring Log individual pain episodes (body area, score, character, trigger, duration, and what relieved it) and record flare-up episodes with severity, trigger, treatment used, and outcome. Also record your physiotherapy status and exercise programme.
  • Tab 3 — Medications & Management Record all your pain medications including regular analgesia, NSAIDs, neuropathic agents, DMARDs, biologics, topical treatments, and steroid injections. Also document any surgical interventions, joint replacements, nerve blocks, and adaptive aids.
  • Pain score (0–10) 0 = no pain, 10 = worst imaginable. Use this consistently so clinicians can compare over time.
  • Nociceptive vs neuropathic pain Nociceptive pain comes from tissue damage (aching, throbbing). Neuropathic pain comes from nerve damage or dysfunction (burning, shooting, tingling). They respond to different medications.
  • Nociplastic pain Central sensitisation — the nervous system amplifies pain signals even without obvious structural damage. Seen in fibromyalgia and CRPS. Treated differently from tissue-based pain.
  • DMARD Disease-Modifying Anti-Rheumatic Drug — slows progression of inflammatory arthritis (e.g. methotrexate, hydroxychloroquine). Requires blood monitoring.
  • DEXA scan Bone density scan. Identifies osteopenia or osteoporosis, which increases fracture risk. Important if you take steroids long-term.
💡 If you have been seen at a pain clinic, record the pain specialist's name and what treatments were tried. Clinicians need to know what has already been attempted before suggesting alternatives — this prevents repeating failed treatments and helps them find what works for you.

Skin Conditions

This section records your skin diagnosis, flare history, investigation results, and all your topical and systemic treatments. It is particularly useful when seeing a new dermatologist, GP, or A&E clinician — giving them an immediate picture of your condition, current treatments, and what has and has not worked.
  • Tab 1 — My Skin Condition Record your primary diagnosis, areas affected, known triggers, severity, current status, skin type, family history, and details specific to psoriasis (PASI/DLQI scores, psoriatic arthritis) and hidradenitis suppurativa (Hurley stage, areas affected).
  • Tab 2 — Monitoring & Flares Log each flare episode (dates, area, severity, trigger, treatment, outcome) and record any skin investigations such as biopsies, patch testing, swabs, and blood tests.
  • Tab 3 — Treatments & Management Record all topical treatments (emollients, steroids, calcineurin inhibitors, retinoids), systemic treatments (oral antibiotics, retinoids, immunosuppressants, biologics, antihistamines), and phototherapy details including location and sessions completed.
  • Emollient A moisturiser that repairs the skin barrier. Apply liberally and frequently — especially after bathing. The most important treatment for eczema.
  • Topical steroid potency Ranges from mild (hydrocortisone 1%) to very potent (Dermovate). Only use potent steroids for short courses and never on the face, groin, or armpits without specialist advice.
  • PASI score Psoriasis Area and Severity Index (0–72). Used to measure severity and qualify for NHS biologic treatment (typically PASI ≥10 with DLQI ≥10).
  • DLQI Dermatology Life Quality Index — how much your skin condition affects daily life. Completed at dermatology appointments. Important for accessing advanced treatments.
  • Biologic Injectable medication targeting specific immune pathways. Used for moderate-to-severe psoriasis, HS, and atopic eczema after other treatments have failed. Needs regular blood monitoring and specialist oversight.
  • Hurley stage (HS) Staging system for hidradenitis suppurativa: Stage I (mild, no tunnels), Stage II (moderate, tunnels present), Stage III (severe, widespread). Guides treatment decisions.
💡 Keep a note of the exact brand names and concentrations of your topical steroids — not just "steroid cream". There is a large difference in potency between products. Clinicians need the exact name to avoid prescribing something too weak or too strong for the affected area.

Eye & ENT / Sensory Health

This section records your eye, ear, and sensory conditions — including glaucoma, cataracts, age-related macular degeneration (AMD), hearing loss, tinnitus, Menière's disease, vertigo (BPPV), and Bell's palsy. It helps clinicians understand your vision and hearing status, current treatments, and any urgent risks they need to know about immediately.
  • Tab 1 — My Eye & Ear Condition Record your primary diagnosis, which eye or ear is affected, your diagnosing specialist, and condition-specific details (glaucoma type, cataract stage, AMD type, hearing loss degree, tinnitus severity, vestibular condition, Bell's palsy recovery).
  • Tab 2 — Monitoring & Tests Log your intraocular pressure (IOP) readings over time, record visual acuity results, and keep a hearing test (audiometry) history. Also tracks upcoming specialist appointments.
  • Tab 3 — Treatments & Management Record all your eye drops (with which eye and frequency), any systemic medications for eye or ear conditions, surgical and procedural history, and your clinic team details.
  • IOP (Intraocular pressure) The pressure inside the eye. High IOP can silently damage the optic nerve (glaucoma). Measured in mmHg — your target range is set by your ophthalmologist.
  • Visual acuity Sharpness of vision. 6/6 is normal. 6/60 means you can see at 6 metres what someone with normal vision sees at 60 metres. Glasses or contact lenses may bring this up.
  • AMD (Age-related Macular Degeneration) Affects the central part of the retina. Dry AMD progresses slowly; wet AMD (neovascular) can cause rapid vision loss and needs anti-VEGF injections promptly.
  • BPPV (Benign Paroxysmal Positional Vertigo) Tiny crystals in the inner ear move to the wrong canal, causing brief but intense spinning when you move your head. Treatable with the Epley manoeuvre.
  • Menière's Disease Excess fluid in the inner ear causes attacks of severe vertigo, fluctuating hearing loss, tinnitus, and a feeling of fullness in the ear. Attacks can last 20 minutes to several hours.
  • Bell's Palsy Sudden weakness of one side of the face from inflammation of the facial nerve. Steroids within 72 hours of onset improve recovery. Most people recover well, but some have lasting weakness (synkinesis).
  • Tympanometry A test that checks how well the eardrum moves. Detects fluid behind the eardrum (glue ear) or problems with the middle ear. Different from a hearing test.
⚠️ Seek A&E immediately for: sudden painless loss of vision or a curtain across vision (retinal detachment), a sudden shower of new floaters with flashes, or painful red eye with halos around lights (acute glaucoma). These are ophthalmic emergencies. Do not wait for a GP appointment.

Autoimmune & Rheumatology

This section records your autoimmune or inflammatory condition — such as rheumatoid arthritis (RA), psoriatic arthritis, Sjögren's syndrome, scleroderma, polymyalgia rheumatica (PMR), or sarcoidosis. It tracks your disease activity, blood results, imaging, and all your medications including DMARDs and biologics. This is essential information for any clinician who needs to understand your immune system and what medications you are on.
  • Tab 1 — My Autoimmune Condition Record your primary and secondary diagnoses, disease status, key blood markers and antibodies (RF, anti-CCP, ANA, ANCA, HLA-B27), and condition-specific details (RA disease activity, Sjögren's dryness severity, scleroderma subtype, PMR/GCA status, sarcoidosis stage).
  • Tab 2 — Disease Activity & Monitoring Log each flare or disease activity measurement, blood results over time (CRP, ESR, antibodies), imaging results (X-ray, MRI, DEXA), and your monitoring schedule (bone density scans, eye checks, lung function, cardiac assessments).
  • Tab 3 — Medications & Treatment Record all your conventional DMARDs (methotrexate, hydroxychloroquine, etc.), biologic and targeted therapies (adalimumab, baricitinib, etc.), steroid details including your tapering plan and bone protection, and your rheumatology team contacts.
  • DAS28 Disease Activity Score using 28 joints — measures RA activity on a scale. Below 2.6 is remission; above 5.1 is high activity. Your rheumatologist calculates this at clinic visits.
  • RF & anti-CCP Blood tests that help confirm rheumatoid arthritis. Anti-CCP is more specific for RA. Being RF positive does not always mean you have RA, and some RA patients are RF negative (seronegative).
  • DMARDs Disease-Modifying Anti-Rheumatic Drugs. These slow or stop joint damage rather than just relieving pain. Methotrexate is the most commonly used. They need regular blood monitoring (FBC, LFTs, U&Es).
  • Biologics Injectable or infused medicines that target specific proteins in the immune system. Examples: adalimumab (TNF inhibitor), tocilizumab (IL-6 inhibitor). Used when DMARDs alone are not enough. Require TB and hepatitis screening before starting.
  • JAK inhibitors Oral targeted therapies (e.g. baricitinib, upadacitinib) that work differently to biologics. Taken as tablets. May have different side effect profiles — discuss with your rheumatologist.
  • Bone protection Long-term steroids reduce bone density. Calcium, vitamin D, and bisphosphonates (e.g. alendronate) are usually prescribed alongside to protect bones.
  • Uveitis Inflammation inside the eye — a complication of AS, RA, and sarcoidosis. Causes a painful red eye with reduced vision. Needs same-day ophthalmology — do not delay.
💡 Always carry a list of your DMARDs and biologics to hospital. Many of these suppress your immune system and must be paused during infections or before surgery. Clinicians need to know immediately — it affects how they manage your care.

Blood & Haematology

This section records your blood or haematological condition — such as anaemia, sickle cell disease, haemophilia, ITP, or a blood cancer such as leukaemia, lymphoma, or myeloma. It tracks your diagnosis, key safety information (blood group, clotting status), blood test results, transfusion history, and all your haematology medications. This information is critical for any clinician who needs to understand your blood condition and how to manage you safely.
  • Tab 1 — My Blood Condition Record your diagnosis, severity, and current status, plus your blood group, any alloantibodies, clotting disorder details, factor level (if haemophilia), and whether you are transfusion-dependent. Also record your haematology team details and next review date.
  • Tab 2 — Monitoring & Results Log each blood test result (haemoglobin, platelets, ferritin, B12, clotting, INR, etc.) with the date and whether it was normal or flagged. Also record every transfusion — what product was given, how much, where, why, and whether there was any reaction.
  • Tab 3 — Medications & Treatment Record all your haematology medications with dose, frequency, and route. If you are anticoagulated (on warfarin or a DOAC), record your target INR range and whether you self-monitor. If you have haemophilia, record your factor product, prophylaxis regimen, and whether you have an infusion port. Use the Bleeding & Crisis Log to document any significant episodes.
  • Blood group and alloantibodies Your blood group (A, B, AB or O; positive or negative) is used to match blood for transfusion. Alloantibodies are antibodies to specific blood group proteins (e.g. Anti-K, Anti-Jk(a)) — if you have these, cross-matching takes longer and the transfusion lab must be notified in advance.
  • Factor level In haemophilia, your factor level is the percentage of clotting factor you have compared to someone without haemophilia. Severe (<1%) means spontaneous bleeding; mild (5–40%) means bleeding mainly after injury or surgery.
  • Inhibitors Antibodies that neutralise your factor replacement therapy. If you have inhibitors, standard factor replacement does not work — specialist treatment (e.g. bypassing agents or emicizumab) is needed.
  • INR International Normalised Ratio — measures how long your blood takes to clot. If you are on warfarin, your INR must be kept within your target range (usually 2–3). Too low risks clotting; too high risks bleeding.
  • Transfusion reaction An adverse reaction to a blood transfusion. Can range from mild (rash, low-grade fever) to life-threatening (haemolytic reaction, TRALI). Always tell clinical staff about any previous reactions.
💡 Always carry your blood group card and, if you have haemophilia, your haemophilia emergency card. Tell any clinician, dentist, or surgeon about your condition before any procedure — anticoagulants, low platelets, and clotting disorders must be managed carefully before and after procedures.

Mental Health Expansion

This section records the detailed picture of your mental health conditions — eating disorders, PTSD, ADHD, autism, and addiction. It works alongside the Mental Health & Crisis section (S20) and gives clinicians the full context they need to care for you safely and with understanding.
  • Toggle on each condition — only tick the conditions that apply to you. Each panel will appear automatically.
  • Eating Disorders — record your diagnosis, treatment service, monitoring needs, and what clinicians should know during admissions.
  • Addiction & Substance Use — includes substitute prescribing, naloxone, and withdrawal risk information that is critical for safe clinical care.
  • PTSD & Trauma — fill in the trigger and "what helps" fields. These are the most important fields for clinical staff to see before any procedure or examination.
  • ADHD — record your medication (a controlled drug — prescribers need to know), your adjustments, and your communication needs.
  • Autism / ASD — the clinical encounter guidance fields help hospital and GP staff understand how to communicate with you and make adjustments. Especially valuable during A&E visits or admissions.
The "What clinicians should know" fields in every panel are the most valuable. Fill these in even if the rest is incomplete — a clinician reading your QR code needs to know your triggers, communication needs, and risks before they start treating you.

Depression, Anxiety & Mood

This section helps you record your mental health conditions, medications, care team, and wellbeing plans in one place — so you never have to repeat your history when you see a new clinician.
  • PHQ-9 A 9-question score used by GPs and clinicians to measure depression severity. 0–4 = minimal, 5–9 = mild, 10–14 = moderate, 15–19 = moderately severe, 20–27 = severe.
  • GAD-7 A 7-question anxiety score. 5–9 = mild, 10–14 = moderate, 15+ = severe.
  • CPA Care Programme Approach — a care planning framework used for people with more complex mental health needs.
  • CMHT Community Mental Health Team — specialist NHS community mental health support.
  • ERP Exposure and Response Prevention — the main talking therapy for OCD. Involves gradually facing feared situations without performing compulsions.
  • DBT Dialectical Behaviour Therapy — the main therapy for BPD/EUPD. Teaches emotional regulation, distress tolerance, and mindfulness.
  • Depot / LAI Long-acting injectable antipsychotic given every 1–4 weeks instead of daily tablets.
Record your relapse prevention plan — clinicians find it invaluable during a crisis to know what your early warning signs are and what has helped you in the past.

Thyroid & Endocrine

This section covers thyroid conditions, adrenal conditions, and pituitary disorders. It helps you keep track of your blood results, scans, and medications — all in one place for any clinician to see.
  • TSH Thyroid Stimulating Hormone — the main blood test for thyroid function. High TSH = underactive thyroid; low TSH = overactive thyroid.
  • Free T4 / Free T3 The active thyroid hormones. T4 is converted to T3 in the body — T3 is the form cells use.
  • TPO antibodies Thyroid peroxidase antibodies — positive result suggests Hashimoto's (autoimmune hypothyroidism) or Graves' disease.
  • Levothyroxine The synthetic T4 tablet used to treat hypothyroidism. Take on an empty stomach, 30–60 minutes before food, with water only. Do not take with calcium or iron supplements within 4 hours.
  • Adrenal crisis A life-threatening emergency in Addison's disease — usually triggered by illness or injury when the body cannot produce enough cortisol. Call 999 immediately if vomiting prevents taking oral steroids.
  • Synacthen test A test of adrenal gland function — a dose of synthetic ACTH is given and cortisol response measured.
  • IGF-1 Insulin-like growth factor 1 — used to monitor acromegaly (excess growth hormone).
If you have Addison's Disease, always carry your steroid emergency card and make sure family/carers know how to give an emergency hydrocortisone injection. Record your sick day rules here so A&E staff can see them immediately.

Dementia & Memory

This section helps you record dementia type, care arrangements, legal documents, and medications — so any clinician or carer can immediately understand the full picture.
  • MMSE Mini-Mental State Examination — a 30-point cognitive test commonly used to track dementia severity. 24–30 = normal, 18–23 = mild, 10–17 = moderate, below 10 = severe.
  • MoCA Montreal Cognitive Assessment — another widely used cognitive screening tool, slightly more sensitive than MMSE for mild impairment.
  • LPA Lasting Power of Attorney — a legal document allowing a named person to make decisions if the person with dementia loses capacity. Must be set up while the person still has capacity.
  • Admiral Nurse Specialist dementia nurses who support both the person with dementia and their family/carers. Available through Dementia UK.
  • Lewy Body antipsychotic warning People with Lewy Body Dementia can have severe reactions to many antipsychotic drugs. Always record this prominently so hospital staff see it immediately.
  • Delirium vs dementia Sudden rapid change in confusion is usually delirium (often caused by infection, medication, or dehydration) — not a worsening of dementia. Always seek urgent medical review.
Set up Lasting Power of Attorney as early as possible — it can only be done while the person has mental capacity to consent.

Migraine & Headache

This section helps you record your headache condition, track attacks, and log the medications you use — both for acute relief and prevention.
  • Aura Neurological symptoms that can occur before or during a migraine — most commonly visual (zigzag lines, blind spots), but can also be tingling, numbness, or speech difficulty. Usually lasts 20–60 minutes.
  • Preventative medication Taken daily to reduce how often migraines occur — not for individual attacks. Takes 8–12 weeks to judge effectiveness.
  • Triptan The most effective acute medication for migraine. Works best taken early in the attack. Does not work for cluster headaches taken as tablets — injection or nasal spray needed.
  • Medication Overuse Headache (MOH) Taking any painkiller or triptan on 10+ days per month can cause headaches to become chronic. Keeping this log helps identify if this is happening.
  • CGRP treatments Newer monthly or quarterly injections/infusions (Ajovy, Aimovig, Emgality, Vyepti) specifically for migraine prevention — available on NHS for eligible patients.
  • Cluster headache One of the most painful conditions known. Short attacks (15–180 mins) of excruciating one-sided pain, often with eye watering and nasal congestion. High-flow oxygen is first-line treatment.
Keep an attack log for at least 3 months before your neurology appointment — it dramatically improves the consultation and helps identify patterns and triggers.

CFS/ME & Long COVID

This section helps you record your fatigue condition — whether CFS/ME, Long COVID, FND, or post-viral fatigue — track your symptoms and crashes, and log your management plan.
  • PEM (Post-Exertional Malaise) A worsening of all symptoms after physical, cognitive, or emotional effort — often delayed by 12–48 hours. This is the hallmark of CFS/ME. It is not ordinary tiredness and cannot be pushed through.
  • Pacing The key management strategy for CFS/ME — staying within your energy limits to avoid triggering PEM. Some people use heart rate monitoring to guide this.
  • Energy envelope The amount of activity you can do without triggering a crash. Staying inside your envelope is more important than doing more on a good day.
  • Long COVID Symptoms lasting more than 12 weeks after COVID-19 that are not explained by another diagnosis. Many symptoms overlap with CFS/ME.
  • FND Functional Neurological Disorder — real neurological symptoms (weakness, tremor, non-epileptic seizures) caused by a change in brain function, not damage to brain structure.
  • Crash / flare A period when your symptoms are significantly worse than usual — often triggered by overdoing activity, infection, or stress.
  • Orthostatic intolerance Symptoms that worsen on standing — dizziness, palpitations, fatigue — due to changes in blood flow when upright. Common in CFS/ME.
Log your energy level and activity daily, even briefly. Patterns over weeks reveal your true limits and help identify triggers — this is far more useful than memory alone when speaking to your doctor.

HIV & Immunology

This section lets you record your HIV status, ART medications, monitoring results, and specialist care. All information here is private and under your control — you decide what to share and with whom.
  • ART (Antiretroviral Therapy) Medication that suppresses HIV and prevents it from damaging your immune system. Modern ART is taken as one or two tablets daily for most people.
  • Viral load Measures how much HIV is in your blood. On effective ART, this should reach "undetectable" (usually <50 copies/ml). Undetectable = untransmittable (U=U).
  • CD4 count Measures the strength of your immune system. Normal range is 500–1,500. Below 200 increases risk of opportunistic infections.
  • U=U If your viral load is undetectable and stays that way, you cannot pass HIV on through sex. This is established science, endorsed by NHS and BHIVA.
  • PrEP Pre-Exposure Prophylaxis — medication taken by HIV-negative people to prevent HIV. Highly effective when taken as prescribed. Available free from sexual health clinics in England.
  • PEP Post-Exposure Prophylaxis — emergency medication started within 72 hours after potential HIV exposure. Go to A&E or a sexual health clinic immediately — do not wait.
  • Opportunistic infections Infections that healthy immune systems control easily but can become serious when CD4 is low. Prophylactic medications can prevent the most common ones.
  • CVID / Primary immunodeficiency Inherited conditions where the immune system does not produce enough antibodies. Treated with regular immunoglobulin replacement (IVIG or SCIG).
Keep your ART log up to date — including drugs you've previously taken and why they were stopped. This information is vital for any prescriber managing your HIV care, especially if you're admitted to hospital.

Travel Health

This section helps you record your travel vaccinations, trip history, and travel medications — so any clinician can see what you've had and what risks you've been exposed to. It is especially important if you travel with complex health conditions or take immunosuppressant medicines.
  • Vaccination Log Record every travel vaccine: date given, dose number, batch number if you have it, and when your next dose is due. This is useful if a clinician asks whether you've had certain vaccines after returning unwell.
  • Trip Record Log each trip with the countries visited, risk level, and any antimalarials you took. This information is critical if you fall ill after returning — a clinician will want to know where you've been.
  • Travel Medications Record any drugs prescribed for travel (antimalarials, standby antibiotics, altitude sickness tablets). Include start and stop dates so there's a clear record of what you were taking and when.
  • Condition Panels Turn on the panels relevant to you — Malaria, Yellow Fever, Zika, Lyme Disease, TB exposure, Altitude Sickness. Each panel has fields specific to that risk area.
  • Pre-Travel Screening card Note whether your immunocompromised status affects which vaccines you can have — live vaccines like yellow fever may be contraindicated if you are on immunosuppressants or biologics.
  • Emergency Contact Abroad Keep your travel insurance helpline number and nearest consulate here — you may not be able to find them quickly if you are unwell abroad.
  • GHIC card The Global Health Insurance Card (replacement for the EHIC) gives you access to state healthcare in EEA countries at local rates — it does not cover repatriation or private care. Always have travel insurance as well.
💡 Take a photo of your yellow fever certificate and keep a copy digitally — some countries require proof at the border and a paper copy can get lost. Also ask your GP for a letter listing your conditions and medications before any major trip; this can be invaluable in a foreign hospital.

Vascular & Lymphatic

Record your vascular and lymphatic conditions here — including lymphoedema, varicose veins, peripheral artery disease (PAD), DVT, postural hypotension, and chronic venous insufficiency. This section helps clinicians understand your circulation and fluid drainage at a glance.
  • Lymphoedema — Chronic swelling caused by damage to the lymphatic drainage system. Use the condition toggle to record affected limb(s), stage, compression therapy, and whether you receive MLD (manual lymph drainage). Use the Limb Measurement Log in Tab 2 to track changes over time.
  • PAD (Peripheral Artery Disease) — Narrowing of arteries supplying the legs, causing cramp-like pain on walking (claudication). Record your ABPI result — this is the key diagnostic number. Use the ABPI Reading Log in Tab 2 to track readings over time.
  • Postural Hypotension — Blood pressure drops when you stand up, causing dizziness or fainting. Use the Lying/Standing BP Log in Tab 2 to record readings in both positions — a drop of 20+ mmHg systolic is significant. Share this log with your GP or cardiologist.
  • DVT — Blood clot in a deep vein. Record which vein was affected, whether it was provoked (by surgery, cancer, long-haul travel etc.), and your anticoagulation medicine and duration.
  • Varicose Veins / CVI — Use the CEAP classification dropdown — your vascular surgeon will use this same grading system, so using it here helps them understand your records quickly.
  • ABPI — Ankle Brachial Pressure Index. A number between 0 and 1.3 measuring blood flow in the legs. Normal is 0.9–1.3. Below 0.9 = PAD. This is measured with a blood pressure cuff and a Doppler probe at your ankle and arm.
  • Compression class — Class 1 is lightest support; Class 4 is the strongest. Most people with varicose veins or CVI wear Class 2. Lymphoedema patients often need Class 3 or flat-knit custom garments. Your nurse or lymphoedema therapist will advise.
💡 If you have lymphoedema and notice your affected limb is suddenly hotter, redder, and more painful than usual — especially with a fever — this may be cellulitis. Call 111 immediately. Recurrent cellulitis can damage lymphatic vessels further, so prompt treatment is essential.

Oral & Dental Health

Record your dental and oral health conditions, procedures, and daily care routine. This section is especially important for complex patients — dry mouth from medications, oral thrush from antibiotics or immunosuppression, and bisphosphonate use all change how your dentist treats you. A complete dental record helps avoid dangerous mistakes.
  • Condition toggles — Tick any conditions that apply to you (gum disease, dry mouth, oral cancer, oral thrush, TMJ, recurrent mouth ulcers, missing teeth, tooth decay). Each one opens a detailed panel where you can record what you know.
  • Dental Procedure Log (Tab 2) — Record every dental appointment, check-up, and procedure. Particularly useful if you have been in hospital and ward staff ask about recent dental work.
  • Dry mouth (xerostomia) — Over 400 common medications cause dry mouth as a side effect. Without saliva, teeth decay very rapidly. Record which medications you take and what products you use (e.g. Biotene, Duraphat toothpaste) — your dentist needs this information.
  • Bisphosphonates — If you take alendronic acid, risedronate, or IV bone medications for osteoporosis or cancer, record this in Tab 3. Your dentist must know before doing any extractions, as jaw bone heals slowly on these drugs.
  • Anticoagulants — Warfarin, apixaban, rivaroxaban, and clopidogrel all affect bleeding after dental procedures. Always tell your dentist before any treatment.
  • Antibiotic prophylaxis — Most patients do NOT need antibiotics before dental work. But if a specialist has advised it (e.g. for certain cardiac or immunological conditions), record the exact details so your dentist can act on them.
  • Oral cancer — Any mouth ulcer that hasn't healed in 3 weeks, any red or white patch, or any lump in the mouth or neck should be seen urgently. Use this panel to record your diagnosis, treatment, and follow-up team.
💡 When you're admitted to hospital, dental health is often not asked about — but it matters. Print or show your QR code so ward staff can see your dental medications, dry mouth risk, and any important instructions (e.g. dentures to be removed for surgery, bisphosphonate use before oral procedures).

📋 Conditions A–Z

The Conditions A–Z section lists every health condition covered in this app, with a plain-English description and a direct link to the section where you can record your information. Use it to quickly find out where to enter your health data.
  • Browse A–Z tab Use the alphabet bar or search box to find a condition by name. Click any condition to expand it — you will see a plain-English overview and one or more "Go to section" buttons that take you directly to the relevant part of the app.
  • By Body System tab Browse conditions grouped by body system — cardiovascular, respiratory, digestive, neurological, and more. Useful if you are unsure of the exact condition name.
  • Rare & Complex tab Lists all 29 conditions covered in the Rare & Complex Diseases section, each with a one-line description and a link to open that section.
💡 If you have been diagnosed with a condition and cannot find the right section, try searching for it here first — it will tell you exactly where to go.

🩺 Symptoms A–Z

The Symptoms A–Z section is a reference guide to help you understand common symptoms — what may cause them and when to seek help. It is not a diagnostic tool and cannot replace advice from your GP, 111, or a clinician.
  • Browse A–Z tab Use the alphabet bar to jump to symptoms starting with a particular letter, then click any symptom to expand it and read possible causes and what-to-do advice. You can also type in the search box to find a symptom by name.
  • By Body Area tab If you don't know the name of your symptom, use this tab to browse by where it affects you — Heart & Circulation, Digestive, Skin, and so on. Tap a tile to see the relevant symptoms.
  • When to Get Help tab A clear guide to the four tiers of care — 999 (life-threatening emergencies), 111 (urgent but not emergency), GP (needs assessment), and Self-care (manageable at home). Use this if you're unsure which route to take.
  • Colour-coded tiers Every expanded symptom shows a red 999 badge, amber 111 badge, and green self-care note so you can quickly scan the right action for your situation.
  • Disclaimer Information here is general. It is written for a broad audience and may not apply to your specific medical situation. Always seek professional advice if you are concerned.
💡 If you're ever unsure whether a symptom is serious, call 111 — it's free, available 24/7, and the trained nurses and advisors will tell you exactly what to do. Never feel you're wasting their time.

Medical Cannabis

This section lets you record your medical cannabis prescription, track products and symptom response, and store important clinical and legal information — including the UK driving law that applies to all prescribed patients.
  • My Prescription tab Record your prescribing clinic, doctor, pharmacy, and dispensing details. Fill in your current product's THC/CBD content and dosing schedule.
  • Treatment Logs tab Use the Product Log to record each product you've tried and rate its effect. The Symptom Response Log lets you compare scores before and after each session. The Side Effects Log tracks unwanted effects so you can discuss them at your next review.
  • Reviews & Clinical tab Log each clinical review appointment. Fill in the Driving & Legal card — this is important: UK drug-drive law applies to all prescribed patients, including those using cannabis medicinally. Read the warning carefully. The Travel card reminds you to check legality before travelling abroad.
  • THC vs CBD THC causes the psychoactive effect; CBD does not. Some products are CBD-only (e.g. Epidyolex). Always ask your prescriber about the ratio in your product.
  • Driving The UK zero-tolerance law sets a blood THC limit of 2 µg/L. Even therapeutic doses can exceed this. Always discuss driving with your prescriber before you start treatment.
Keep a printed copy of your prescription letter with you whenever you carry your medication. It won't give you a legal exemption from the drug-drive law, but it demonstrates you are a legitimate patient if questioned.

Continence & Bladder/Bowel Health

This section helps you record and manage bladder and bowel conditions including incontinence, overactive bladder, catheter care, and bowel problems. Use it to share detailed information with your continence nurse, urologist, or GP.
  • My Condition tab Tick the conditions that apply to you — each one reveals a detailed record card. Fill in your diagnosis type, severity, relevant investigations (urodynamics, cystoscopy, anorectal manometry), and your care team contact details.
  • Monitoring & Logs tab Use the Bladder & Bowel Diary to record daily fluid intake, urine output, leakage episodes, urgency, and bowel type (using the Bristol Stool Scale). Keep this diary for 3 days before any continence appointment — your specialist will ask for it. The Catheter Record card tracks change dates, who performs changes, and any complications.
  • Medications & Management tab Record all bladder and bowel medications (e.g. solifenacin for OAB, movicol for constipation, loperamide for diarrhoea). Record your continence products, any surgical interventions you have had, and your pelvic floor physiotherapy progress.
  • Stress incontinence Leakage when coughing, sneezing, or exercising. Often improves significantly with pelvic floor exercises done correctly for 3 months or more.
  • Urge incontinence / OAB Sudden strong urge to pass urine. Bladder retraining and medications can help. Record how many times you pass urine per day — normal is 6–8 times; more than 8 is considered frequent.
  • Bristol Stool Scale Types 3 and 4 are ideal. Record your usual type in the diary — it helps your GP or colorectal team assess whether you have constipation or diarrhoea-predominant symptoms.
  • Catheter care Record your catheter size, change frequency, and who performs changes. Note any signs of infection: cloudy or smelly urine, fever, or increased leakage around the catheter. Report these to your district nurse or GP promptly.
Blood in your urine (haematuria) should always be reported to your GP — it is a 2-week wait referral symptom. New loss of bladder or bowel control with back pain or leg weakness is an emergency — go to A&E immediately.

Children's Health

This section is managed by a parent or carer and holds complete health records for each of your children. Use it at appointments, A&E visits, or when speaking to a new clinician so you have everything in one place.
  • My Children tab Click “+ Add Child” to create a record for each child. Each record holds their NHS number, GP details, diagnoses, allergies, medications, school information, EHCP status, and a full NHS immunisation checklist.
  • NHS Immunisation Record Inside each child's card you will find a collapsible “NHS Immunisation Record” section. Tick each vaccine group as it is given and note the date. This helps you spot gaps and is useful when starting a new school or nursery.
  • EHCP Education, Health and Care Plan — a legal document for children with special educational needs. Record the local authority, status, and review date here. The Information Hub explains what an EHCP is and how to request one.
  • Paediatric Information tab Record Red Book location, developmental concerns, newborn screening results, and your child's paediatric team. This tab covers information that applies across all your children rather than each child individually.
  • When to Get Help tab A quick reference for 999 and 111 symptoms in children. Always available even without saving any data.
  • Red Book The Personal Child Health Record given at birth. Bring it to every appointment — especially health visitor checks and paediatric appointments.
If your child has multiple conditions or complex needs, use the Key Diagnoses and Special Needs fields to summarise them in plain English. A clinician seeing your child for the first time in A&E will thank you for it.

Learning Disabilities & Neurodevelopmental

This section keeps a complete record of a learning disability or neurodevelopmental condition, including communication needs, care team details, annual health check history, legal frameworks, and physical health monitoring.
  • My Condition tab Record your primary diagnosis, IQ range, functioning level, and how you communicate best. The sensory and behaviour card helps clinicians understand what might cause distress and what support plan is in place.
  • Annual Health Check All adults with a learning disability on the GP Learning Disabilities Register are entitled to a free annual health check. Use the log table to record each check and the resulting Health Action Plan. If your GP has not offered one, ask for it — it is a legal entitlement.
  • Reasonable Adjustments The NHS is legally required to make reasonable adjustments under the Equality Act 2010. Use the Hospital Passport Notes field to write what clinicians must know — bring this to every appointment.
  • Mental Capacity Act Everyone is assumed to have capacity unless assessed otherwise. Record any LPA, DoLS authorisation, or IMCA involvement here so clinicians have the full picture.
  • Hospital Passport A hospital passport tells staff how you communicate, what helps you, what doesn't, and who to contact. Ask your community LD nurse or GP for a template — having one in the export from this app means you always have it to hand.
  • Physical Health tab Covers thyroid function (important for Down's syndrome), epilepsy, vision, hearing, dental checks, and dysphagia. Use the specialist screenings card for Down's syndrome-specific monitoring.
At your next appointment, show the clinician your Hospital Passport Notes and Communication Needs fields. If they do not know what Makaton or PECS is, explain briefly — you are the expert on how you communicate.

Frailty & Falls Prevention

This section records your Clinical Frailty Score, falls history, bone health, care team, home adaptations, and support referrals — giving every clinician an instant picture of your physical reserve and safety needs.
  • Clinical Frailty Score (CFS) A 1–9 scale used in almost every hospital admission for older adults. It describes how much physical reserve you have. A score of 5 or above means extra support may be needed during illness or procedures. Ask your GP or hospital team what your score is — knowing it helps you advocate for the right level of care.
  • Falls Log tab Record each fall with the date, time, location, and any injury. This history is extremely useful in A&E, falls clinics, and GP reviews — patterns often reveal a treatable cause (blood pressure, medication side effects, inner ear problems).
  • Bone Health card Enter your DEXA scan result and T-score if you have had one. A T-score of -2.5 or below means osteoporosis. Record any bone-protecting medication (bisphosphonate) and your vitamin D and calcium supplements here.
  • Polypharmacy Taking 5 or more medicines increases falls risk. The Medications Review Log records when a GP or pharmacist reviews your medicines and what was changed. Ask for a medicines review if you have fallen or feel unsteady.
  • Support & Adaptations tab Record what walking aids you use, what has been fitted at home (grab rails, stair lift, wet room), and whether you have a pendant alarm. This tab is especially useful for OT assessments and discharge planning after a hospital stay.
  • FRAX score A tool that calculates your 10-year probability of a major bone fracture based on your age, weight, height, and risk factors. Your GP can calculate it — enter the result here.
Before any hospital admission or procedure, make sure your Clinical Frailty Score is filled in. Clinicians use it to decide on the safest treatment plan — without it they may not realise you need a frailty-aware approach.

Podiatry & Foot Health

This section records your podiatry team, foot conditions, wound measurements, nail surgery, footwear, and daily self-care. It is particularly important for people with diabetes, poor circulation, or nerve damage — where foot problems can escalate quickly.
  • Podiatry Team card Enter your podiatrist's name, clinic, and contact number. Note your referral reason and how often you attend. This helps any clinician understand your foot care pathway at a glance.
  • Diabetic Foot panel Tick this if you have diabetes. Fill in your risk category (Low / Moderate / High / Active). Your GP or diabetes nurse should check your feet at least annually — record the date here. Neuropathy means you may not feel pain in your feet, which is why daily inspection is so important.
  • Wagner grade A 0–5 scale used to classify diabetic foot ulcers by depth and severity. Grade 0 means no open sore; Grade 5 means extensive gangrene. Your podiatrist or wound care nurse will assign this.
  • Nail Conditions panel Tick this if you have ingrowing toenails, thickened nails, or fungal nail infection. Do not dig into an ingrowing nail yourself — see a podiatrist. If the toe is hot, swollen, or producing pus, see your GP for antibiotics.
  • Biomechanical / Orthotics panel Tick this if you have been assessed for flat feet, high arches, plantar fasciitis, bunions, or similar. Record what type of insole or orthotic you were given and when it was last reviewed.
  • Wound & Ulcer Log tab Use the measurement log to track healing over time — recording length, width, and depth at each dressing change. Bring this log to every podiatry or TVN appointment.
  • Self-Care & Prevention card Check your feet every day, especially if you have diabetes. Look for redness, blisters, cuts, or breaks in the skin. Moisturise the soles but not between the toes (moisture between toes encourages fungal infection).
If you have diabetes, any new break in the skin on your foot should be assessed the same day. Do not wait for your next scheduled appointment. Spreading redness, blackening of toes, or a foul smell from a wound needs A&E or an urgent same-day call to your podiatry team.

Wound Care & Tissue Viability

This section helps you record your wounds and the care you receive from tissue viability nurses (TVNs), district nurses, and wound clinics. Keeping a wound measurement log means you can see whether a wound is healing — and share that evidence with any clinician who treats you.
  • Wound Care Team card Enter the name and contact details of your TVN, district nurse, and practice nurse. Knowing who to call when a wound changes is crucial — fill this in as soon as you are referred.
  • Active Wounds card Record how many wounds you currently have and what type they are. Note whether you have been referred to a TVN or vascular surgeon, and whether nutritional support is in place — both have a major impact on healing.
  • Pressure Ulcer panel Tick this if you have or are at risk of pressure ulcers. Record your EPUAP category (1–4), your Waterlow risk score, and what pressure-relieving equipment you have been given. If you are in hospital or receiving care at home, your nurse should assess your Waterlow score on admission or first visit.
  • Leg Ulcer panel Tick this if you have a venous, arterial, or mixed leg ulcer. Always record your ABPI result — compression therapy is dangerous without it if your arteries are affected. Note how often your bandages or stockings are changed and by whom.
  • Fungating Wound panel Tick this if you have a wound caused by cancer breaking through the skin. Managing odour, exudate, and comfort is the priority — record what is working and share this with your palliative care team.
  • Wound Measurement Log (Tab 2) Record the size of each wound at every dressing change — length, width, and depth in centimetres. Also note the wound bed, exudate level, and any signs of infection. A wound that is not getting smaller over 4–6 weeks needs urgent review.
  • PUSH Score Log (Tab 2) The PUSH (Pressure Ulcer Scale for Healing) tool scores surface area, exudate, and tissue type on a 0–17 scale. A falling score means the wound is improving. Your TVN or nurse will score this — record it here to track progress.
  • Dressings & Management (Tab 3) Record your current primary and secondary dressings, how often they are changed, and who changes them. If you are using NPWT (negative pressure wound therapy / VAC), note the device and pressure setting.
  • Nutritional Support card Good nutrition — especially protein, vitamin C, and zinc — is essential for wound healing. If you are on TPN or enteral nutrition, make sure your wound care team and your dietitian are talking to each other. A MUST score of 2+ means high malnutrition risk and should trigger a dietitian referral.
  • EPUAP categories explained Category 1 = redness that does not turn white when pressed (skin intact). Category 2 = shallow open ulcer or blister (partial skin loss). Category 3 = deeper ulcer, fat may be visible (full thickness skin loss). Category 4 = damage to muscle, tendon, or bone (most serious).
If a wound develops spreading redness, warmth, or swelling up the limb — or if you have a fever combined with a worsening wound — seek urgent help. Ascending cellulitis can progress to sepsis within hours. Call your district nurse or GP urgently, or go to A&E if you cannot get same-day help.

Speech & Language Therapy

This section records your Speech and Language Therapy (SALT) care — covering both communication (speaking, understanding, reading, writing, and AAC devices) and swallowing (dysphagia). Bringing this record to any hospital admission means staff will immediately know how to communicate with you and what texture food and fluids you need.
  • SALT Team card Enter your speech and language therapist's name, clinic, and phone number. Note your referral reason and next appointment. This is often the most important contact for patients with communication or swallowing problems — make sure it is filled in before any planned admission.
  • Communication card Record your primary communication method, speech clarity, and any diagnosed conditions such as aphasia, dysarthria, or apraxia. The "preferred communication tips" field is especially important — fill it in with what actually works for you (e.g. give extra time, use yes/no questions) so any clinician who reads it can communicate effectively with you.
  • AAC / Communication Aids panel Tick this if you use any communication device or system, from a simple picture board to a high-tech eye-gaze device. Record your communication passport location — this short document explaining how to communicate with you can be life-saving during a hospital admission.
  • Voice panel Tick this if you have had a laryngectomy, have a voice prosthesis, or have a voice condition. Record your prosthesis brand and change frequency — the ENT or SALT team at any hospital will need this information urgently.
  • Stammering panel Tick this if you stammer. Recording your therapy approach and impact level helps any clinician understand what communication support you may need and avoids finishing your sentences for you.
  • Dysphagia Overview (Tab 2) Record whether you have a swallowing difficulty, what caused it, and whether you have had a videofluoroscopy or FEES assessment. Always note your aspiration risk — this is critical patient safety information for any hospital admitting you.
  • Food & Fluid Texture card Record your IDDSI food texture level and fluid level precisely. These are standardised numbers (0–7) used on NHS hospital menus — giving the correct level to ward staff prevents dangerous feeding incidents. Note your thickener name and dose.
  • Swallowing Log (Tab 2) Record each meal or snack attempt — note the texture, whether you coughed, and whether your voice sounded wet afterwards (a sign food may have entered the airway). Share this log with your SALT team at reviews.
  • SALT Review Log (Tab 3) Record each formal SALT review — who you saw, what assessment tool they used, and whether your communication and swallowing are improving, stable, or declining.
  • Goals & Progress card Record your current therapy goals and outcome measure scores. A falling DOSS score or rising FOIS score means improvement — track this over time to see your progress clearly.
If you are admitted to hospital, tell the ward nurse immediately about any swallowing difficulties and your required food texture and fluid level. Do not accept regular food or thin fluids if your SLT has told you to avoid them — this could cause aspiration pneumonia. Show staff this section of your passport.

Eating Disorders

This section provides detailed tracking for eating disorders — including physical health monitoring (weight, electrolytes, ECG), treatment records, and ARFID-specific support. Enable it in Setup if you have a diagnosed eating disorder.
  • AN (Anorexia Nervosa)Restriction of food intake with intense fear of weight gain. Physical complications include malnutrition, bone loss, bradycardia, and electrolyte imbalance.
  • BN (Bulimia Nervosa)Cycles of binge eating and purging. Physical risks include electrolyte disturbances (low potassium), dental erosion, and oesophageal damage.
  • BED (Binge Eating Disorder)Recurrent binge episodes without purging. Associated with significant psychological distress, obesity risk, and diabetes risk.
  • ARFIDFood avoidance not driven by body image — often linked to sensory sensitivities, fear of choking, or low appetite. Common in autism. Can require enteral nutrition.
  • OSFEDClinically significant eating disorder not meeting full AN/BN/BED criteria. Equally serious — requires the same level of care.
  • Refeeding syndromeA dangerous shift in electrolytes (especially phosphate) when nutrition is restarted too quickly after starvation. Requires medical supervision.
  • QTc intervalA heart rhythm measure on an ECG. Prolonged QTc is a serious complication of eating disorders and some medications — can cause dangerous arrhythmias.
  • CBT-EEnhanced Cognitive Behavioural Therapy — the NICE-recommended first-line treatment for eating disorders in adults.
If you have an eating disorder, always carry this passport to hospital. Tell clinicians your normal weight range, whether you are in active treatment, and your ED team contact — they must be involved in any medical admission decisions.

Occupational Health & Work Capability

This section records your employment status, occupational health (OH) referrals, reasonable adjustments, fit notes, absences, return-to-work plans, and benefit awards — giving any clinician an instant picture of how your health affects your ability to work and what support you have in place.
  • Employment Status cardRecord your current work situation — employed, self-employed, unable to work due to health, retired, etc. This helps clinicians understand the social and financial context of your condition.
  • Occupational Health (OH) cardRecord the OH provider your employer uses, the date you were referred, and the key adjustments recommended in the report. This is especially useful if you are admitted to hospital and need to tell HR you will be absent.
  • Reasonable Adjustments cardRecord what adjustments are currently in place at work, their review date, and whether they are working. Under the Equality Act 2010, employers must make reasonable adjustments for long-term health conditions — this card helps you track and review them.
  • Access to Work (AtW) cardRecord your AtW reference number, support type, and amount awarded. Access to Work is a DWP grant scheme that can fund practical support to help you stay in employment — it is separate from your employer's obligations.
  • Fit Note Log (Tab 2)Log every fit note you receive — including the type ("not fit for work" or "may be fit for work") and the conditions attached. Your employer may ask to see these, and they are useful evidence if you ever need to appeal a benefits decision.
  • Absence Log (Tab 2)Record periods of sickness absence — start date, return date, reason, and days lost. Keeping this log helps you spot patterns and provides an accurate record if HR ask about your attendance history.
  • Return to Work Plan (Tab 3)If you are returning after a long period off, record your phased return schedule — weeks 1–2 hours, weeks 3–4 hours, etc. A written plan agreed with your manager protects you and helps ensure the phased return is honoured.
  • Benefits Record (Tab 3)Record your current benefit awards — PIP, ESA, UC, DLA, Attendance Allowance, or Carer's Allowance. Include reference numbers and review dates. This section is for record purposes only — it is not financial or legal advice.
  • Key Contacts (Tab 3)Record your OH doctor, union rep, HR manager, and DWP case manager in one place. This can be invaluable during a hospital admission when you need to notify people quickly.
If you are admitted to hospital unexpectedly, you may need to notify your employer and HR. Fill in the Key Contacts card with your HR manager's contact details so a family member or carer can make that call on your behalf if you are too unwell.

🧪 Beta Tester Feedback

Welcome, Beta Tester — and thank you! 🙏

The Personal Health Passport was built by a patient, for patients. Your time testing it means the world — every piece of feedback you give will directly shape what this becomes for thousands of people living with complex or chronic health conditions.

🔒
Use a fictional character — not your real details
Please do not enter your real name, date of birth, NHS number, or address. Create a completely made-up person for testing. Your real data is private and should stay that way.
🎯
Test the conditions you actually have
Use the Setup Wizard to enable the sections that match your real health situation — but under your fictional character's name. This is the most valuable thing you can do: checking that your conditions are covered properly.

📋 How to Test the Passport

Follow these steps to give us the most useful feedback. You don't need to complete everything — even 20 minutes of testing is incredibly helpful.

  1. Create a fictional character. Give them a made-up name, a fictional date of birth, a fake NHS number (e.g. 123 456 7890), and an invented address. Anything goes — have fun with it.
  2. Run the Setup Wizard. Click the button. Go through all 8 steps as if this were a real patient registration. Enable the health conditions your fictional character has.
  3. Enable the conditions you actually live with. This is the most important step. In Steps 5–7 of the wizard, tick the conditions that match your real health situation. Then check: does the passport cover them properly? Is anything missing?
  4. Fill in a few sections. Try adding medications in Section 5, a health condition in Section 6, and an upcoming appointment in Section 7. Use fictional data throughout.
  5. Try the QR code and export. Click Patient Summary & Export in the menu. Generate a QR code and preview the summary. This is what a clinician would see — does it look right?
  6. Come back here and tell us what you found. Answer the three questions below. Be as honest as you like — all feedback is welcome, including the critical stuff.

💬 Your Feedback

Each submission is stored separately — you can come back and submit again as many times as you like as your thoughts change.

Even small things count — e.g. a button that was right where you expected it, or a field that was obvious to fill in.
Don't hold back — if something wasn't obvious, that's exactly what we need to know. No detail is too small.
Dream big or keep it simple — we want to hear what would make this genuinely useful for you.
🎉

Thank you!

Your feedback has been recorded and will help make the passport better for every patient who uses it. Feel free to come back and share more thoughts any time — every submission helps.

📬 My Feedback History

Loading your feedback history…
No feedback submitted yet — use the form above to send your first message.

🏥 Passport Setup Wizard

Step 1 of 6

Welcome to your Health Passport

This wizard sets up your core health information across 8 steps. You can skip any step and come back later. Your data is saved securely after each step.

Nothing here is compulsory — fill in as much or as little as you like. Even just your name, medications, and an emergency contact gives clinicians the essentials.

You'll be guided through:

  • Your personal & clinical details
  • Emergency contacts, medications & clinical alerts
  • Specialist care (enteral nutrition / homecare)
  • Common medical conditions — tick the ones that apply
  • Specialist conditions & support services
⚡ Fast Track — I'm unwell, just the essentials
Skip the full setup. Enter your name, date of birth, blood type, emergency contact, and medications — then go straight to your passport. You can complete the full setup later.
⚡ Fast Track — Essential Details
Emergency Contact
Current Medications

Your Details

Basic identification and clinical measurements for your Master Record.

Your Team & Medications

Emergency contacts, current medications, and key clinical alerts for healthcare professionals.

Emergency Contacts

LabelName / TeamRoleLocationPhone

Current Medications

MedicationDoseFrequencyRoute

Clinical Alerts

Specialist Care

Tell us about enteral nutrition and homecare nurse visits. These unlock dedicated tracking sections.

Enteral Nutrition / TPN

Add one row per tube or line. You can add more from Section 3a later.

TypeLocation

Homecare Nurse Visits

Medical Conditions — Part 1

Tick Yes for any that apply. This adds dedicated tracking sections to your passport. You can change these at any time from Setup.

🏥 Common Medical Conditions
🩸
Diabetes
Type 1, Type 2, insulin, HbA1c monitoring
📈
Blood Glucose
Blood sugar monitoring & glucose readings
❤️
Heart Conditions
AF, heart failure, angina, pacemaker, hypertension
🫘
Kidney & Renal
CKD, dialysis, transplant, kidney stones
🟤
Liver Health
Cirrhosis, hepatitis, NAFLD, liver transplant
🫀
Stroke & Neurological
Stroke, TIA, MS, Parkinson's, epilepsy
🎗️
Cancer Care
Cancer diagnosis, treatment logs, tumour markers
🫁
Respiratory Health
Asthma, bronchiectasis, ILD, pulmonary fibrosis
🍽️
Digestive & GI Health
Crohn's, colitis, IBS, coeliac, GORD, pancreatitis
🧠
Depression, Anxiety & Mood
Depression, anxiety, bipolar, OCD, BPD, psychosis
🦋
Thyroid & Endocrine
Thyroid, Addison's, Cushing's, pituitary, diabetes insipidus

Selections take effect immediately. You can always update these from ⚙️ Setup.

Medical Conditions — Part 2

More specialist conditions. Tick Yes for any that apply to you.

🔬 Specialist Medical Conditions
🚨
Allergies & Anaphylaxis
EpiPen, allergen log, anaphylaxis action plan
💨
COPD & Sleep Support
COPD, emphysema, inhalers, sleep apnoea, NIV
🦴
Musculoskeletal & Pain
Osteoarthritis, fibromyalgia, back pain, chronic pain
🧴
Skin Conditions
Psoriasis, eczema, acne, hidradenitis suppurativa, vitiligo
👁️
Eye & ENT / Sensory
Glaucoma, cataracts, AMD, tinnitus, Menière's, vertigo
🔬
Autoimmune & Rheumatology
RA, Sjögren's, scleroderma, PMR, psoriatic arthritis
💉
Blood & Haematology
Anaemia, sickle cell, haemophilia, blood cancer
🧬
Rare & Complex Diseases
EDS, MCAS, POTS, CF, Marfan, rare conditions
🧩
Dementia & Memory
Alzheimer's, vascular, Lewy body, FTD, mild cognitive impairment
🤕
Migraine & Headache
Migraine, cluster headache, chronic tension headache, medication overuse
😴
CFS/ME & Long COVID
Chronic fatigue syndrome, post-COVID syndrome, FND, post-viral fatigue
🔴
HIV & Immunology
HIV, PrEP/PEP, ART management, primary immunodeficiency
✈️
Travel Health
Travel vaccinations, malaria prophylaxis, altitude sickness, Lyme disease
🫀
Vascular & Lymphatic
Lymphoedema, varicose veins, PAD, DVT, postural hypotension
🦷
Oral & Dental Health
Gum disease, tooth decay, dry mouth, oral cancer, dental procedures

Selections take effect immediately. You can always update these from ⚙️ Setup.

Support & Wellbeing

These sections help you track support needs, mental wellbeing, and care arrangements.

🤝 Support & Wellbeing
💙
Mental Health & Crisis
Crisis plan, MH profile, safe messaging, emergency contacts
🧩
Mental Health Expansion
Eating disorders, PTSD, ADHD, autism, addiction
⚔️
Wellbeing & Battle Plan
Weekly check-in, motivation, wellbeing goals
🩹
Stoma Care
Bag changes, skin checks, stoma output log
🦵
Physiotherapy
Physio sessions, exercise programme, goals
🩻
Breaks & Fractures
Fracture log, hardware, osteoporosis, follow-up
🤝
Carer Information
Named carers, care schedule, respite
🕊️
End of Life & DNACPR
ACP, LPA, DNACPR, organ donation wishes
🛋️
Counselling & Therapy
Therapist, session log, goals, outcome measures
🌿
Medical Cannabis
Prescription tracking, product & dosing log, driving & travel guidance
🚿
Continence & Bladder/Bowel
Incontinence, OAB, bowel problems, catheters, pelvic floor
👶
Children's Health
Parent-managed records for your children — immunisations, diagnoses, EHCP
🧩
Learning Disabilities
Intellectual disability, Down's syndrome, cerebral palsy, annual health checks
🦯
Frailty & Falls
Clinical frailty score, falls log, bone health, home adaptations
🦶
Podiatry & Foot Health
Diabetic foot, nail conditions, orthotics, foot ulcers
🩹
Wound Care
Pressure ulcers, leg ulcers, tissue viability nurse
🗣️
Speech & Language
Communication aids, swallowing difficulties, dysphagia, SALT
🍽️
Eating Disorders
AN, BN, BED, ARFID, OSFED — detailed tracking & physical health monitoring
💼
Occupational Health
Fit notes, work adjustments, Access to Work & benefits record

Your selections take effect immediately. Press Finish when you're done — you can always update these from ⚙️ Setup.

All done! 🎉

Your health passport is set up. Your data has been saved to the database.

Share your emergency summary with any clinician in seconds

ℹ️
What's next?
Explore the sections to fill in your medical history, medications, appointments, and daily clinical logs. If your health situation changes, run Setup again from the Section Index or sidebar to add new sections to your passport.
You don't need to fill everything in at once — a partially complete passport is still far better than none. Come back whenever you have a few minutes.
Patient: | NHS: | Patient No:
© 2026 Personal Health Passport. All rights reserved.
· ·

Effective date: 1 January 2026  ·  Version 1.0

1. Who We Are

The Personal Health Passport ("the Platform", "we", "us") is operated by Darren Carter as an independent digital health-record tool. It is not a regulated medical device and is not operated by or affiliated with the National Health Service (NHS). Correspondence: contact@personalhealthpassport.co.uk.

2. What Data We Collect

We collect only the information you actively provide:

  • Account data: your name and email address, used solely to identify your account and let you log in.
  • Health passport data: every entry you make across all sections of the passport — clinical logs, medications, contacts, appointments, vitals, and notes. This data is provided by you, about you, and is stored exclusively for your use.
  • Technical data: a hashed authentication token stored in your browser's local storage to maintain your session. No IP addresses, browser fingerprints, or behavioural analytics are collected.

3. How We Store and Protect Your Data

All data in transit between your browser and our server is encrypted using TLS (HTTPS). Data at rest is stored in a private MySQL database on a UK-based Virtual Private Server. Passwords are hashed using bcrypt with a cost factor of 12 — plain-text passwords are never stored or accessible. Session tokens are stored as SHA-256 hashes in the database; the raw token is held only in your browser's local storage.

Health records are stored in a structured JSON format linked to your account and are not human-readable without database access credentials, which are not shared with any third party.

4. Absolute Guarantee — Your Data Is Never Sold or Commercialised

We do not sell, licence, rent, share, or otherwise commercialise any data you enter into the Personal Health Passport. Your health records are not used for advertising, profiling, analytics resale, research aggregation, or any commercial purpose of any kind. This guarantee is absolute and unconditional. We do not use any third-party analytics platform, advertising SDK, or behavioural tracking tool that would receive your data.

5. Local Storage and Browser Data

The Platform stores the following in your browser's local storage:

  • Authentication token (pp_token) — a random 64-byte token used to restore your session after it expires server-side, without requiring you to re-enter your password.
  • Preference flags — small key-value pairs that record which Daily Log modules are active, which condition panels are expanded, and your last-visited section. These are not transmitted to the server and exist only to improve your experience on the current device.
  • Gateway acknowledgement (pp_gateway_seen_v1) — a flag confirming you have read the onboarding information. Cleared if you clear your browser data.

Clearing your browser's local storage will log you out and reset preferences, but will not delete your passport data, which remains on the server linked to your account.

6. Data Retention and Deletion

Your account and passport data are retained for as long as your account is active. To request deletion of your account and all associated health records, contact us at contact@personalhealthpassport.co.uk. Deletion is permanent and irreversible. We will process verified deletion requests within 30 days.

7. Your Rights (UK GDPR)

As a UK resident you have the right to access, correct, export, restrict processing of, or erase the personal data we hold about you. To exercise any of these rights, contact us by email. We do not use automated decision-making or profiling. You have the right to lodge a complaint with the Information Commissioner's Office (ICO) at ico.org.uk if you believe your rights have not been respected.

8. Third Parties

The Platform loads the QRCode.js library from a content delivery network (CDN) solely to generate QR codes within your browser. No health data is sent to this CDN — QR generation is entirely client-side. No other third-party services, scripts, or APIs receive any user data.

9. Changes to This Policy

We may update this Privacy Policy from time to time. Material changes will be communicated via the onboarding gateway on your next login. Continued use of the Platform after any update constitutes acceptance of the revised policy.

Effective date: 1 January 2026  ·  Version 1.0

1. Agreement to Terms

By creating an account and using the Personal Health Passport ("the Platform"), you agree to be bound by these Terms and Conditions. If you do not agree, you must not use the Platform. These Terms govern your use of the Platform in its entirety, including all sections, features, exports, and associated functionality.

2. Eligibility

The Platform is intended for use by adults aged 16 and over. If you are under 16, a parent or guardian must register and manage your account on your behalf. By registering, you confirm that the information you provide is accurate and that you are eligible to use the Platform.

3. Account Security

You are solely responsible for maintaining the confidentiality of your account credentials. You must not share your password with any other person. If you suspect your account has been accessed without your authorisation, you must change your password immediately and notify us at contact@personalhealthpassport.co.uk.

We recommend using a strong, unique password for your Health Passport account given the sensitivity of the data stored within it. We will never ask for your password by email, telephone, or any other channel.

4. Acceptable Use

You may use the Platform solely for its intended purpose: recording, organising, and presenting your own personal health information. You must not:

  • Use the Platform to store information about any other person without their explicit consent.
  • Attempt to gain unauthorised access to any other user's account or data.
  • Use the Platform in any way that could compromise the security, integrity, or availability of the service.
  • Submit false or misleading information that could result in harm to yourself or others if relied upon clinically.
  • Use the Platform for any commercial purpose, including reselling access or using it as part of a paid service.

5. No Medical Advice — Clinical Decisions Remain with Your Care Team

The Platform is a personal record-keeping and organisational tool only. Nothing within the Platform — including informational reference cards, clinical terminology, threshold guidance, or structured data fields — constitutes medical advice, diagnosis, or treatment recommendation. All clinical decisions, treatment changes, and emergency responses must be directed by qualified healthcare professionals.

Self-tracked logs entered into this Platform do not replace, substitute, or supersede the professional clinical judgement of your GP, consultant, specialist nurse, or any other registered healthcare professional. Always follow the advice of your clinical team.

6. Limitation of Liability

To the fullest extent permitted by applicable law, the Personal Health Passport and its operator accept no liability for:

  • Clinical decisions made on the basis of information stored or displayed within the Platform.
  • Loss of data due to failure to press Save, browser data clearance, or device failure.
  • Interruption of service due to server maintenance, hosting failures, or circumstances beyond our reasonable control.
  • Any harm arising from reliance on reference information displayed within informational cards or guide panels.

Your use of the Platform is entirely at your own risk. The Platform is provided "as is" without warranties of any kind, express or implied.

7. Intellectual Property

All software, design, text, and structural elements of the Platform are the intellectual property of the operator. You may not copy, reproduce, distribute, or create derivative works from the Platform without express written permission. Your health data remains entirely your own — we claim no ownership over any personal information you enter.

8. Termination

We reserve the right to suspend or terminate any account that violates these Terms. You may delete your account at any time by contacting us. Upon termination, all associated data will be permanently deleted from our systems within 30 days.

9. Governing Law

These Terms are governed by and construed in accordance with the laws of England and Wales. Any disputes arising from your use of the Platform shall be subject to the exclusive jurisdiction of the courts of England and Wales.

10. Changes to These Terms

We may update these Terms from time to time to reflect changes in the Platform, applicable law, or operational requirements. Material changes will be communicated via the onboarding gateway on your next login. Your continued use of the Platform following any update constitutes acceptance of the revised Terms.

Effective date: 1 January 2026  ·  Version 1.0

1. Our Approach to Cookies

The Personal Health Passport is built on a principle of minimal data collection. We use no advertising cookies, no tracking cookies, no analytics platforms, and no third-party profiling tools of any kind. This policy describes the small number of strictly functional storage mechanisms required to make the Platform work.

2. What We Use and Why

The Platform uses browser local storage — not traditional HTTP cookies — for all client-side persistence. Local storage entries are never transmitted to third parties and exist solely on your device.

Storage KeyPurposeExpires
pp_token Authentication token. Keeps you logged in between sessions without requiring your password each time. Linked to a hashed record in our database — invalid if you log out or the server invalidates it. 30 days from last login, or on explicit sign-out
s11_modules Records which Daily Log add-on modules (e.g. COPD, POTS, Blood Glucose) you have activated. Stored locally for instant page rendering; also persisted to the server as part of your preferences. Persistent (until cleared)
src_toggle_* & s15_toggle_* Records which condition panels (Rare Diseases, Women's Health, Men's Health) you have expanded or enabled. Improves page-load experience by restoring your toggle state instantly. Persistent (until cleared)
pp_gateway_seen_v1 Records that you have acknowledged the onboarding gateway. Prevents the introduction screen from reappearing on every login once you have confirmed you have read it. Persistent (until cleared)
pp_last_section Remembers which section of the passport you were last viewing so you are returned to the same place on your next session. Persistent (until cleared)

3. Server-Side Session Cookie

PHP, the server-side language powering the Platform, creates a standard session cookie (PHPSESSID) in your browser when you log in. This cookie contains only a random session identifier — it holds no personal data and is used purely to link your browser request to your server-side session. It is a strictly necessary functional cookie that cannot be disabled without preventing login entirely. It expires when you close your browser tab or explicitly sign out.

4. What We Do Not Use

  • No Google Analytics, Matomo, or any other web analytics platform.
  • No advertising or retargeting cookies of any kind.
  • No social media pixels (Facebook, X/Twitter, LinkedIn, etc.).
  • No third-party tracking scripts or SDKs, with the sole exception of the QRCode.js CDN library used for client-side QR code generation (no data is transmitted to this CDN).
  • No cross-site tracking identifiers.

5. Managing and Clearing Storage

You can clear all local storage entries at any time through your browser settings (typically under Privacy & Security → Clear browsing data → Local storage and cookies). Doing so will log you out and reset your dashboard preferences, but will not delete your passport data, which remains on the server linked to your account.

Because we use only strictly necessary functional storage, there is no cookie consent banner — these mechanisms are legally exempt from opt-in requirements under UK PECR as they are essential to the operation of the service you have requested.

6. Changes to This Policy

We will update this Cookie Policy if we introduce any new storage mechanisms. Any meaningful changes will be communicated via the onboarding gateway on your next login. We commit to never introducing advertising, tracking, or analytics cookies without explicit, informed consent.

Select Time
Hour
00
:
Minute
00
🛡️
Personal Health Passport
Please read the following before entering your passport.

Welcome to Your Health Passport

Your passport is a single, always-available record that travels with you — to every GP appointment, A&E visit, and clinic.

1
Navigating Your Passport

Use the sidebar menu or the home screen tiles to move between sections. Condition-specific sections (such as Diabetes, Cancer Care, or Women's Health) stay hidden until you switch them on in the Setup Wizard — keeping your passport focused on you.

2
Saving Your Records

Every section has a Save Changes button. Press it whenever you finish filling in a section. There is no auto-save — saving is a deliberate action. A ✓ Saved confirmation appears when your record has been stored.

3
Your QR Code & Summary

The Patient Summary & QR section lets you generate a printable snapshot of your passport at any time. Pick a preset (Emergency / GP / Hospital / Full), then print or save. The QR code gives any clinician instant access to your critical details — no login needed on their end.

How Your Data Works

Where your information lives and what happens if you log out.

🔒
Stored Securely on the Server

Everything you save is stored in a private, encrypted database linked to your account. Log in from any device and your records reload automatically.

💾
No Auto-Save — Press Save Changes

Changes you make are held in your browser only until you press Save Changes. If you close the tab or your session expires before saving, unsaved changes will be lost.

⏱️
Staying Logged In

A session token stored in your browser keeps you logged in between visits. If you clear your browser data you will be asked to log in again — your saved passport data is never deleted.

Medical Disclaimer

Please read this carefully before using your Health Passport.

⚠️
This platform is not a medical device, clinical decision tool, or emergency service.
It does not provide diagnosis, treatment recommendations, or triage guidance of any kind.
📁 A Personal Record-Keeping Tool Only

The Health Passport helps you organise and present your health information to clinicians. It does not interpret, validate, or act on any data you enter. All information is entered and owned by you.

🏥 Not a Substitute for Professional Advice

Nothing in this platform constitutes medical advice. Always follow the guidance of your GP, consultant, or specialist. Reference information shown in the app is for general context only.

🚨 In an Emergency — Call 999

Do not use this platform to seek emergency help. Call 999 immediately or go to A&E. For urgent non-emergency concerns, call 111.