The Care Navigator

Your practical guide to navigating life with sickle cell — from healthcare and crisis care to benefits, wellbeing, work, family and everyday support.

The Foundation

Knowledge is one of the most powerful tools you have.

This section covers the essentials - from understanding sickle cell and building your healthcare team to accessing support and making informed decisions about your care

Understanding your condition can help you advocate for your care, ask informed questions and make more confident decisions about your health.

Living with sickle cell often means navigating complex medical information, blood test results, treatment options and healthcare systems. This section aims to break down that information into practical, understandable guidance that can help you better understand your condition and become a more informed partner in your care.

Sickle cell disease is an inherited blood disorder that affects haemoglobin, the protein inside red blood cells that carries oxygen around the body.

Instead of remaining soft and round, some red blood cells can become rigid and sickle-shaped.

These cells:

  • Carry oxygen less effectively
  • Break down more quickly
  • Can block blood vessels
  • Can cause pain and organ damage

Haemoglobin (Hb) is the protein inside red blood cells that carries oxygen around your body.

People living with sickle cell often have lower haemoglobin levels than the general population.

Different types include:

HbA (normal adult haemoglobin)
HbS (sickle haemoglobin)
HbF (fetal haemoglobin)

The balance of these haemoglobin can influence how sickle cell affects an individual.

Low haemoglobin can contribute to:

  • Fatigue
  • Breathlessness
  • Reduced exercise tolerance
  • Dizziness
  • Reduced energy levels

Questions To Ask

  • What is my usual haemoglobin level?
  • Has it changed recently?
  • What symptoms should I watch for?

Not all sickle cell conditions are the same.

Your genotype (the type of sickle cell you have) can influence your symptoms, treatment options, potential complications and family planning decisions.

Common genotypes include:

HbSS (Sickle Cell Anaemia)

HbSS is often considered the most severe form of sickle cell disease.

People with HbSS may experience:

  • More frequent pain crises
  • More severe anaemia
  • Higher risk of certain complications
  • Greater need for ongoing specialist monitoring

However, every person's experience is different.

HbSC

HbSC can sometimes be described as a milder form of sickle cell disease, but this can be misleading.

Many pHospital admissions

  • Serious complications

Symptoms and severity vary greatly from person to person.

HbS Beta Thalassaemia

Symptoms can vary depending on the type and severity.

Some people experience symptoms similar to HbSS, while others may have a milder disease course.

Sickle Cell Trait (HbAS)

People with sickle cell trait carry one sickle cell gene and one normal haemoglobin gene.

Most people with sickle cell trait do not have sickle cell disease.

However, knowing your status is important for:

  • Family planning
  • Genetic counselling
  • Understanding inheritance risks
  • Certain health considerations

Action Step

If you don't know your genotype, ask your haematology team:

"What is my genotype and what does it mean for me?"

Understanding your genotype can help you make more informed decisions about your healthcare.

Blood tests provide important information about how your body is functioning.

Many people receive blood test results without ever being told what they actually mean.

Understanding some of the key markers can help you have more informed conversations with your healthcare team.

HbS Percentage
HbS is sickle haemoglobin.

This measurement shows how much sickle haemoglobin is present in your blood.

This number can provide useful information but should never be viewed in isolation.

HbF Percentage
HbF (Fetal Haemoglobin) is a type of haemoglobin present before birth.

Higher HbF levels can help reduce sickling and may reduce complications for some people.

Treatments such as hydroxyurea often aim to increase HbF levels.

Reticulocyte Count
Reticulocytes are young red blood cells.

This result can show how hard your bone marrow is working to replace red blood cells that have broken down.

High levels may indicate increased red blood cell destruction.

Ferritin
Ferritin measures iron stores.

This is particularly important because:

  • Some people may become iron deficient
  • Others may develop iron overload following multiple blood transfusions

One of the most frustrating experiences reported by people living with sickle cell is feeling that their symptoms are dismissed because their blood results appear "normal" or "not severe enough."

The reality is that sickle cell disease is complex.

Two people can have very similar blood results and completely different experiences.

Some people with seemingly favourable blood results may experience:

  • Severe pain
  • Frequent hospital admissions
  • Significant fatigue
  • Reduced quality of life

While others with more concerning laboratory results may experience fewer symptoms.

This is because disease severity is influenced by many factors including:

  • Genetics
  • Organ involvement
  • Inflammation
  • Infection
  • Stress
  • Sleep
  • Hydration
  • Previous complications
  • Individual variation


Why This Matters

Blood tests tell part of the story.

They do not measure pain.

They do not measure fatigue.

They do not measure how your condition affects your daily life.

Clinical decisions should consider:

  • Blood results
  • Medical history
  • Previous complications
  • Current symptoms
  • Functional impact
  • Lived experience

Pain is real, even when it cannot be fully explained by a single laboratory result.

A pain crisis occurs when sickled red blood cells obstruct blood flow.

This can reduce oxygen delivery to tissues and organs, leading to severe pain.

Pain can occur anywhere in the body and varies significantly between individuals.

Tracking symptoms can help identify patterns and improve conversations with healthcare professionals.

Consider monitoring:

  • Pain episodes
  • Fatigue
  • Hydration
  • Sleep
  • Menstrual cycle
  • Stress levels
  • Hospital admissions
  • Triggers
  • Medications


The goal is not perfection.

The goal is understanding your baseline so you can recognise changes early and advocate more effectively for your care.

  • What genotype do I have?
  • What do my blood results mean?
  • What is my HbS percentage?
  • What is my HbF percentage?
  • Am I at higher risk of specific complications?
  • How often should my bloods be reviewed?
  • What should I monitor between appointments?
  • Would a symptom tracker help?
  • Should I be taking folic acid?
  • Have my vitamin D levels been checked?

Understanding your results can help you become a more informed partner in your own care.

Living with sickle cell often means interacting with multiple healthcare professionals throughout your life.

Understanding who does what — and how to access them — can help you get the right support more quickly and avoid unnecessary delays in care.

Remember:

You are an important member of your healthcare team too.

No one knows your body, symptoms and lived experience better than you.

Your GP is often the first point of contact for healthcare concerns and can help coordinate many aspects of your care.

Your GP Can Help With

  • Referrals to specialists
  • Prescriptions
  • Sick notes (Fit Notes)
  • Benefits evidence
  • Mental health referrals
  • Vaccinations
  • Managing conditions alongside sickle cell


How Do I Access My GP?

✓ Book an appointment through your GP surgery

✓ Use online consultation systems

✓ Request a telephone appointment

✓ Ask for a longer appointment if discussing multiple concerns

Questions To Ask

  • Can you refer me to a specialist?
  • Can you see my haematology letters?
  • Can you provide supporting evidence for my PIP application?
  • Can you refer me for mental health support?
  • Can you check my vitamin D levels?


When To Contact Your GP

  • New symptoms
  • Mental health concerns
  • Benefits applications
  • Medication reviews
  • General health concerns
  • Non-emergency issues

Your haematology team specialises in blood disorders and should lead your sickle cell care.

They are often the most important specialist team involved in your care.

They Can Help With

  • Pain plans
  • Treatment decisions
  • Blood test interpretation
  • Medication reviews
  • Blood transfusions
  • Hydroxyurea discussions
  • Annual reviews
  • Long-term monitoring


How Do I Access My Haematology Team?

✓ Through your hospital

✓ Via your Clinical Nurse Specialist

✓ Via consultant appointments

✓ Through a GP referral if you are not currently under a service

Questions To Ask

  • Do I have a pain plan?
  • Can I have a copy?
  • What should I do during a crisis?
  • What do my blood results mean?
  • Am I due an annual review?
  • What complications should I be aware of?
Find Out More About Pain Plans

Many people are unaware they have access to a specialist nurse.

A Clinical Nurse Specialist is often one of the most valuable members of a person's healthcare team.

They Can Help With

  • Education
  • Pain plans
  • Crisis advice
  • Care coordination
  • Hospital admissions
  • Healthcare navigation
  • Accessing local support services


How Do I Access A Specialist Nurse?

Ask:

  • Your consultant or GP
  • Your haematology department
  • Your haemoglobinopathy centre


Questions To Ask

  • Am I assigned a Clinical Nurse Specialist?
  • How can I contact them?
  • Can they help me obtain a pain plan?
  • Can they help me prepare for A&E visits?

Not all pain experienced by people with sickle cell occurs during a crisis.

Some people experience chronic pain that affects daily life.

Pain Management Teams Can Help With

  • Chronic pain
  • Medication reviews
  • Pain psychology
  • Pacing and activity management
  • Improving quality of life

How Do I Access Pain Management Services?

✓ Ask your GP

✓ Ask your haematology team

✓ Ask your consultant for a referral

Questions To Ask

  • Am I suitable for a pain management referral?
  • Are there alternatives to increasing medication?
  • Are there non-medication approaches that may help?

Many people with sickle cell experience:

  • Joint pain
  • Reduced mobility
  • Muscle weakness
  • Deconditioning following admissions


Physiotherapy May Help With

  • Strength
  • Mobility
  • Recovery after illness
  • Confidence with movement


How Do I Access Physiotherapy?

✓ GP referral

✓ Hospital referral

✓ Community physiotherapy services

Questions To Ask

  • Would physiotherapy benefit me?
  • Is there a physiotherapist with experience supporting people with long-term conditions?

Living with sickle cell can create additional costs and challenges that many people without the condition never have to think about.

These may include:

  • Time off work
  • Reduced working hours
  • Increased travel costs
  • Prescription costs
  • Hospital appointments
  • Additional heating costs
  • Mobility difficulties
  • Carer support needs


Many people are entitled to financial support but either don't know it exists or assume they won't qualify.

This section will help you understand what support may be available and where to get help applying.

Many people living with sickle cell may be eligible for:

□ Personal Independence Payment (PIP)
□ Universal Credit
□ Limited Capability for Work and Work Related Activity (LCWRA)
□ Blue Badge
□ Access to Work
□ Disabled Students' Allowance
□ Carer's Allowance
□ Council Tax Reduction
□ Warm Home Discount
□ Disabled Person's Railcard
□ Local Welfare Assistance
□ Charity Grants

Eligibility depends on how your condition affects your daily life, not simply your diagnosis.

What Is PIP?

Personal Independence Payment (PIP) helps with the additional costs of living with a long-term health condition or disability.

PIP is not means-tested.

This means:

✓ You can work and still receive PIP

✓ Your savings do not affect eligibility

✓ Your partner's income does not affect eligibility

Find out more

Universal Credit helps people with living costs if they:

  • Have a low income
  • Are unable to work
  • Are between jobs
  • Have reduced earning capacity

You may still qualify if you are working.

Useful Resource:

Universal Credit

If you're claiming Universal Credit and your health condition or disability significantly affects your ability to work, you may be eligible for Limited Capability for Work and Work-Related Activity (LCWRA).

LCWRA can provide

✓ An additional monthly payment through your Universal Credit award

✓ Reduced or no work-related requirements, depending on your circumstances

How to apply

  • Report your health condition to Universal Credit
  • Submit continuous Fit Notes (if required)
  • Complete a Work Capability Assessment when invited

Questions to ask

  • Have I reported my health condition to Universal Credit?
  • Have I submitted continuous Fit Notes?
  • Have I been referred for a Work Capability Assessment?

There are several benefits and support schemes that may be available to you. Explore your options and find out what you could be eligible for.

Find out more here

Access to Work
How they support: Provides funding and practical support to make work and the workplace more accessible for people with disabilities.

ACAS (Advisory, Conciliation and Arbitration Service)
How they support: Offers free advice on employment rights, workplace issues, reasonable adjustments and resolving disputes at work.
Contact: 0300 123 1100

Disabled Students' Allowance (DSA)
How they support: Provides funding for specialist equipment, study support, travel costs and other disability-related support for eligible higher education students.

Disability Rights UK
How they support: Provides guidance on disability rights in education and employment, including reasonable adjustments and workplace support.

Equality Advisory Support Service (EASS)
How they support: Offers advice and support on discrimination, human rights and Equality Act 2010 rights.
Contact: 0808 800 0082

Prospects
How they support: Provides careers advice, graduate opportunities and guidance for students and graduates, including information on disability support.

Student Finance England
How they support: Provides financial support for higher education, including information on additional funding available to disabled students.
Contact: 0300 100 0607

UCAS – Disabled Students
How they support: Provides guidance on applying to university, disability support and reasonable adjustments available in higher education.

Universities UK
How they support: Provides information and guidance on higher education, including resources to help disabled students access support and succeed at university.

Knowing what support is available is only the first step. These trusted organisations can help you understand your options, complete applications and access the financial support you're entitled to.

Explore trusted organisations that can help

Your Wellbeing

Living with sickle cell is about more than managing crises.

Many people spend far more time living between crises than they do in hospital.

This section focuses on practical ways to support your physical health, mental wellbeing and quality of life every day. There is no perfect routine and no single approach that works for everyone. The aim is to help you better understand your condition, recognise potential triggers and feel more confident managing your health.

Above all, remember that you are not alone.
 Whether you're looking for advice, reassurance or support, there are people and organisations ready to help whenever you need them.

Find support and services near you

Not all pain crises can be prevented.

However, understanding your triggers may help reduce risk and allow you to seek support earlier.

Common triggers include:

  • Dehydration
  • Infection
  • Extreme temperatures
  • Stress
  • Lack of sleep
  • Overexertion
  • Travelling
  • Altitude changes


So the question is 'What Can I Do To Keep On Top Of My Condition?'

Hydration is one of the most important aspects of self-management.

Water helps blood flow more efficiently and reduces the likelihood of dehydration-related complications.

Dehydration can increase the risk of sickling.

Practical Tips

✓ Carry a water bottle

✓ Increase fluids during hot weather

✓ Increase fluids when unwell

✓ Drink regularly throughout the day

✓ Monitor urine colour (dark urine may indicate dehydration)

Questions To Ask Yourself

  • Am I drinking enough?
  • Do I increase fluids when I am ill?
  • Do I drink more during hot weather?

Poor sleep can affect:

  • Pain levels
  • Recovery
  • Mood
  • Energy levels
  • Stress

Helpful Habits

✓ Maintain a regular sleep schedule

✓ Limit caffeine later in the day

✓ Reduce screen time before bed

✓ Create a calming bedtime routine

✓ Keep your bedroom cool and comfortable

Stress does not cause sickle cell disease.

However, it can contribute to:

  • Fatigue
  • Poor sleep
  • Increased pain
  • Reduced resilience during illness

Helpful Strategies

✓ Walking

✓ Prayer or meditation

✓ Therapy

✓ Journalling

✓ Breathing exercises

✓ Support groups

Movement can support:

  • Mobility
  • Circulation
  • Mental wellbeing
  • Energy levels
  • Recovery

The goal is not intense exercise.

The goal is finding movement that works for your body.

Examples include:

  • Walking
  • Swimming
  • Stretching
  • Yoga
  • Pilates
  • Resistance training

Questions To Ask Your Healthcare Team

  • Is there any exercise I should avoid?
  • Would physiotherapy benefit me?
  • How should I return to exercise after a crisis?

Many complications can be identified earlier through regular monitoring.

Try to attend:

  • Annual reviews
  • Blood tests
  • Specialist appointments
  • Eye screening appointments

Understanding Your Annual Review

Many people attend appointments without knowing what should actually be reviewed.

Consider asking about:

  • Blood results
  • Kidney function
  • Liver function
  • Eye screening
  • Stroke risk
  • Hydroxyurea review
  • Vaccinations
  • Bone health

Questions To Ask

  • When was my last annual review?
  • Am I due any screening tests?
  • Are there any complications I should be monitored for?

Nutrition will not cure sickle cell disease.

However, giving your body the nutrients it needs may help support energy levels, recovery and overall health.

People living with sickle cell are constantly replacing red blood cells.

Folic acid helps support this process.

Many people with sickle cell are prescribed folic acid supplements.

Ask Your Healthcare Team

  • Should I be taking folic acid?
  • Am I taking the correct dose?

Foods Rich In Folate

  • Spinach
  • Kale
  • Broccoli
  • Lentils
  • Chickpeas
  • Black-eyed beans
  • Avocados

Vitamin D

Vitamin D supports:

  • Bone health
  • Immune function
  • Muscle function

Deficiency may contribute to:

  • Fatigue
  • Muscle aches
  • Bone pain

Ask Your Healthcare Team

  • Have my vitamin D levels been checked?
  • Should I consider supplementation?

Sources Of Vitamin D

  • Sunlight exposure
  • Oily fish
  • Eggs
  • Fortified foods
  • Supplements (where appropriate)

Many people assume sickle cell automatically means low iron.

This is not always true.

Some people with sickle cell may be iron deficient.

Others may develop iron overload following blood transfusions.

Important

Never start iron supplements without discussing your blood results with your healthcare team.

Vitamin C supports immune function and helps the body absorb iron from food.

Sources Of Vitamin C

  • Oranges
  • Kiwi
  • Strawberries
  • Peppers
  • Tomatoes
  • Broccoli

Foods That Support Overall Health

There is no special sickle cell diet.

Instead, focus on a balanced diet that supports:

  • Energy
  • Recovery
  • Immune function
  • Heart health


Protein Sources

Protein supports repair and recovery.

Examples:

  • Chicken
  • Fish
  • Eggs
  • Beans
  • Lentils
  • Greek yoghurt


Healthy Fats

Healthy fats support hormone health and overall wellbeing.

Examples:

  • Avocados
  • Olive oil
  • Oily fish
  • Seeds


Fibre

Fibre supports gut health.

Examples:

  • Vegetables
  • Fruit
  • Beans
  • Wholegrains

This can happen during illness, fatigue or recovery.

Consider:

✓ Smaller meals

✓ Smoothies

✓ Soups

✓ Easy-to-digest foods

✓ High-protein snacks

The goal is nourishment, not perfection.

After a crisis, illness or hospital admission, your body may need additional support.

Focus on:

✓ Fluids

✓ Protein

✓ Easy-to-digest foods

✓ Small frequent meals

Examples include:

  • Soup
  • Eggs
  • Fish
  • Greek yoghurt
  • Smoothies
  • Porridge

Recovery is not the time for restrictive dieting.

Living with a chronic condition can affect emotional wellbeing.

Many people living with sickle cell experience:

  • Anxiety
  • Depression
  • Burnout
  • Isolation
  • Medical trauma
  • Fear of future complications

These experiences are common and valid.

Repeated hospital admissions, feeling dismissed or experiencing delays in treatment can have a lasting emotional impact.

Signs may include:

  • Anxiety around healthcare settings
  • Avoiding appointments
  • Feeling constantly on edge
  • Difficulty trusting healthcare professionals

Managing a chronic condition can be exhausting.

Burnout may feel like:

  • Emotional exhaustion
  • Loss of motivation
  • Frustration
  • Feeling overwhelmed

Sometimes the most important thing you can do is ask for support.

Hub of Hope

Can help with:

  • Local Mental Health Services
  • Counselling
  • Crisis Support
  • Community Support
  • Wellbeing Services

The UK's largest mental health support directory, helping you find mental health services and support in your local area.


Mind

Can help with:

  • Mental Health Information
  • Emotional Support
  • Local Support Services
  • Wellbeing Resources
  • Crisis Information

Provides advice, information and support for anyone experiencing a mental health problem.


NHS Talking Therapies

Can help with:

  • Anxiety
  • Depression
  • Stress
  • Low Mood
  • Talking Therapies

Free NHS talking therapies for common mental health problems. Many services accept self-referrals.


Samaritans

Can help with:

  • Emotional Support
  • Crisis Support
  • Loneliness
  • Feeling Overwhelmed
  • Someone to Listen

Available 24 hours a day, 365 days a year for anyone who needs someone to talk to.

Helpline: 116 123 (Free, 24/7)
Email: jo@samaritans.org

SANE

Can help with:

  • Emotional Support
  • Mental Health Advice
  • Information
  • Crisis Support
  • Family & Carer Support

Provides practical and emotional support for anyone affected by mental health problems.

Support Line: 07984 967 708 (leave a message for a callback)

Speaking with people who understand your experience can reduce isolation and improve confidence.

Find Your Sickle Cell Community

Having sickle cell doesn't mean you have to stop travelling, celebrating or enjoying time with family and friends. With a little planning, most people can travel safely and continue doing the things they enjoy.

Planning ahead can help reduce stress and lower the risk of complications.

✔ Pack enough medication for your entire trip, plus extra in case of delays.

✔ Carry your personalised pain plan or A&E Summary Sheet.

✔ Stay well hydrated before and during your journey.

✔ Arrange appropriate travel insurance and declare your condition if required.

✔ Know where to access healthcare at your destination.

✔ If travelling abroad, check whether you need vaccinations or malaria prevention and speak to your healthcare team before you travel.

Many people with sickle cell travel by air safely every year.

To help reduce your risk:

✔ Drink water regularly throughout your journey.

✔ Get up and move around where possible.

✔ Wear comfortable clothing.

✔ Avoid excessive alcohol.

✔ Get plenty of rest before travelling.

✔ Speak to your specialist team before long-haul travel if you have any concerns.

You don't have to avoid social occasions because you have sickle cell, but it's important to be aware that alcohol can increase your risk of:

  • Dehydration
  • Poor sleep
  • Fatigue
  • Triggering a pain crisis in some people

Practical Tips

✔ Eat before drinking.

✔ Alternate alcoholic drinks with water or soft drinks.

✔ Know your limits.

✔ Avoid drinking if you're unwell, dehydrated or recovering from a recent crisis.

✔ Listen to your body—it's okay to stop early or choose not to drink.

Everyone's experience is different.

Learning your personal warning signs can help you seek support earlier.

Possible warning signs include:

  • Increasing pain
  • Fatigue
  • Fever
  • Breathlessness
  • Reduced mobility
  • Unusual weakness
  • Symptoms that differ from your normal baseline

Contact a healthcare professional if:

  • Symptoms are worsening
  • You have a fever
  • Pain is becoming difficult to manage
  • You feel significantly different from your normal baseline

Trust your instincts.

You know your body better than anyone.

Hot weather can increase dehydration risk.

For some people, this may increase symptoms or trigger complications.

Helpful Tips

✓ Carry water

✓ Stay in shaded areas

✓ Avoid prolonged heat exposure

✓ Increase fluids

✓ Plan outdoor activities carefully

Many people report worsening symptoms during colder months.

Helpful Tips

✓ Dress in layers

✓ Keep hands and feet warm

✓ Avoid sudden temperature changes

✓ Warm up gradually when coming indoors

Fatigue is one of the most commonly reported symptoms of sickle cell.

Many people describe fatigue as one of the most difficult and disabling aspects of living with the condition.

Practical Strategies

✓ Pace activities

✓ Prioritise important tasks

✓ Build in recovery time

✓ Improve sleep quality

✓ Stay hydrated

✓ Discuss worsening fatigue with your healthcare team

Questions To Ask

  • Is this level of fatigue expected?
  • Could my blood results explain my fatigue?
  • Have my vitamin levels been checked?
  • Are there treatments that may help?

Many pain crises can be managed safely with support from your healthcare team. However, some symptoms require immediate medical attention.

If you're unsure whether your symptoms are serious, it's always safer to seek medical advice.

Seek urgent medical help if you experience:

A temperature of 38°C or above can be a medical emergency for people living with sickle cell because infections can become serious very quickly.

Seek urgent medical advice immediately.

Chest pain, shortness of breath or a persistent cough should never be ignored.

These symptoms may indicate Acute Chest Syndrome, one of the most serious complications of sickle cell disease.

Call 999 or attend A&E immediately.

People living with sickle cell disease are at an increased risk of stroke, particularly those with HbSS and HbSβ⁰ thalassaemia. A stroke is a medical emergency, so recognising the signs quickly is essential.

Common stoke symptoms are:

  • Sudden weakness or numbness.
  • Difficulty speaking.
  • Facial drooping.
  • Loss of vision.
  • Confusion.
  • Difficulty walking or maintaining balance.


Remember FAST

F – Face

Ask the person to smile. Has one side of their face drooped?

A – Arms

Can they raise both arms, or does one arm drift down?

S – Speech

Is their speech slurred, confused, or difficult to understand?

T – Time

If you notice any of these signs, call 999 immediately. Do not wait to see if the symptoms improve.

Other warning signs

Also seek emergency medical help if you experience:

  • Sudden loss of vision
    Severe headache
    Difficulty walking or loss of balance
    Sudden weakness or numbness
    Confusion

Even if symptoms improve quickly (sometimes called a mini stroke or TIA), call 999 immediately. Prompt treatment can significantly improve outcomes.

Seek urgent medical attention if:

  • Your pain is significantly worse than usual.
  • Home pain relief isn't helping.
  • The pain continues to worsen.
  • You're unable to eat, drink or move because of pain.

✓ Stay hydrated

✓ Discuss worsening fatigue with your healthcare team

Questions To Ask

  • Is this level of fatigue expected?
  • Could my blood results explain my fatigue?
  • Have my vitamin levels been checked?
  • Are there treatments that may help?

Seek urgent medical advice if you experience:

  • Severe weakness.
  • Persistent vomiting.
  • Sudden swelling.
  • Priapism (a prolonged, painful erection that occurs without sexual stimulation) lasting longer than two hours.
  • Confusion.
  • Severe headache.
  • Any symptom that feels significantly different from your usual sickle cell symptoms.

Supporting a Child with Sickle Cell

Children living with sickle cell should be able to participate in education while receiving the support they need to stay safe and healthy.

Good communication between parents, schools and healthcare professionals can make a significant difference.

Many children benefit from an Individual Healthcare Plan (IHP).

This helps school staff understand:

  • Their condition.
  • Warning signs to look out for.
  • What to do during a pain crisis.
  • Medication requirements.
  • Emergency contacts.

Review the plan regularly, particularly if your child's needs change.

Children with sickle cell may miss school because of pain crises, appointments or fatigue.

Schools should understand these challenges and work with families to minimise disruption to education wherever possible.

Physical activity is important, but children should avoid becoming dehydrated, excessively cold or overexerted.

Before school trips, discuss:

  • Access to medication.
  • Hydration.
  • Rest breaks.
  • Emergency plans.
  • Medical facilities at the destination.

Most children can take part with appropriate planning and support.

Individual Healthcare Plans (NHS)

Can help with:

  • Managing your child's healthcare needs at school
  • Medication and emergency procedures
  • Staff awareness and training
  • Day-to-day support
  • Clear communication between school and healthcare teams

Speak to your child's school about putting an Individual Healthcare Plan (IHP) in place to help ensure they receive appropriate support throughout the school day.


Local Authority SEND Information, Advice and Support Services (SENDIAS)

Can help with:

  • SEND Advice
  • Education Rights
  • Education, Health and Care Plans (EHCPs)
  • School Support
  • Parent Guidance

Every local authority provides a SEND Information, Advice and Support Service (SENDIAS), offering free, impartial advice to children, young people and families.


SENCO (Special Educational Needs Coordinator)

Can help with:

  • Individual Healthcare Plans
  • Classroom Adjustments
  • Exam Arrangements
  • Staff Awareness
  • Coordinating Additional Support


Every school has a Special Educational Needs Coordinator (SENCO). If your child has sickle cell, ask to speak to your school's SENCO about the support available, including an Individual Healthcare Plan (IHP) and any reasonable adjustments that may help them at school.

Download The Checklist Here

Moving from children's services to adult healthcare is an important milestone. Transition is more than changing clinics—it's about becoming more confident and independent in managing your health.

Most hospitals begin transition during the teenage years, giving you time to gradually develop the knowledge and skills you'll need as an adult.

As you move into adult services, you'll be encouraged to take a more active role in your care by:

  • Booking and attending your own appointments.
  • Understanding your medications and when to take them.
  • Knowing your sickle cell genotype and medical history.
  • Speaking directly with healthcare professionals.
  • Asking questions and making informed decisions about your treatment.

Parents and carers remain an important source of support, but you'll gradually become the main person managing your healthcare.

Before moving to adult services, it's helpful to make sure you can answer the following questions:

✔️ Do I know my sickle cell genotype?

✔️ Do I know the names and doses of my medications?

✔️ Do I know who to contact if I become unwell?

✔️ Do I know when I should go to A&E?

✔️ Do I understand my treatment plan?

✔️ Do I know how to order repeat prescriptions?

✔️ Do I know the contact details for my haematology team?

✔️ Do I understand any future treatment options that have been discussed with me?

If you're unsure about any of these, ask your healthcare team—they're there to help you prepare.

If you're moving away for university, work or independent living, try to plan ahead.

Before you move:

  • Register with a GP in your new area.
  • Find out which hospital provides specialist sickle cell services nearby.
  • Keep a copy of your pain plan and important medical information.
  • Make sure you have enough medication before moving.
  • Save important contact numbers in your phone.

Planning ahead can help you feel more confident if you become unwell away from home.

Transition Clinics

Many hospitals offer dedicated transition clinics to help young people move from paediatric to adult services. Speak to your paediatric haematology team to find out when transition will begin and what support is available.

Adult Haematology Team

Before transferring, make sure you know:

  • The name of your new consultant and specialist nurse.
  • How to contact your adult haematology team.
  • Which hospital to attend during a sickle cell crisis.
  • How to arrange repeat prescriptions and follow-up appointments.

GP Registration

If you're moving for university or work, register with a GP in your new area as soon as possible. Don't wait until you become unwell to find a local doctor.

University Disability & Wellbeing Services

If you're going to university, contact the Disability or Student Wellbeing Service before you start. They can discuss reasonable adjustments, support plans, accommodation needs and access to additional support throughout your studies.

Useful links:
UCAS – Disabled Students

Access to Work

If you're starting employment, Access to Work may be able to provide practical and financial support to help you stay in work if your sickle cell affects your job.

Benefits & Financial Support

If you're approaching adulthood, it's a good time to review the benefits you may be entitled to, including Personal Independence Payment (PIP), Universal Credit and Access to Work.

Hospital Visits and Healthcare

Whether you already have a personalised Pain Plan, are waiting for one, or don't currently have one, we strongly recommend creating an A&E Summary Sheet.

An A&E Summary Sheet provides healthcare professionals with key information about your condition and should be read alongside your personalised Pain Plan, where available. If you don't yet have a Pain Plan, it can still help guide your emergency care until one is available.

Keep it somewhere you can access quickly. We recommend:

  • Printing a copy to carry with you
  • Saving it on your phone
  • Sharing a copy with family, friends or carers
  • Taking it with you whenever you attend hospital

Remember to keep it up to date whenever your medications, treatment or contact details change.

A pain plan is a personalised document created by your specialist healthcare team that outlines how your pain should be assessed and managed during a sickle cell crisis.

Rather than relying on you to explain your medical history whilst you're in severe pain, a pain plan provides healthcare professionals with clear guidance based on your individual needs and your specialist team's recommendations.

Find Out More About Pain Plans

Whether you already have a personalised Pain Plan, are waiting for one, or don't currently have one, we strongly recommend creating an A&E Summary Sheet.

An A&E Summary Sheet provides healthcare professionals with key information about your condition and should be read alongside your personalised Pain Plan, where available. If you don't yet have a Pain Plan, it can still help guide your emergency care until one is available.

Download A&E Summary Sheet

Going to A&E can be stressful, especially during a pain crisis. Preparing in advance can help you receive the right care more quickly and make the experience less overwhelming. This section explains what to have ready, what to expect, and how to advocate for yourself while you're in hospital.

The best time to prepare for an emergency is when you're feeling well.

Consider keeping the following ready:

✓ Personalised Pain Plan

✓ A&E Summary Sheet

✓ List of current medications and allergies

✓ Haematology team's contact details

✓ Emergency contact information

Let staff know as soon as possible that you have sickle cell disease.

You may wish to:

✓ Show your pain plan immediately

✓ Explain your usual pain relief and what has worked previously

✓ Tell staff if your pain is worsening

✓ Ask for your haematology team to be informed if appropriate

Your care should be based on your symptoms and individual needs.

Remember to:

✓ Keep your healthcare team updated if your pain changes

✓ Stay hydrated if you are able to drink

✓ Ask questions if you don't understand your treatment

✓ Tell staff if medication isn't controlling your pain

✓ Ask about the next steps in your care

Leaving hospital is an important stage of your recovery. Before going home, make sure you understand your treatment plan and know what to do if your symptoms return.

  • What medications should I continue taking?
  • Have any of my medications changed?
  • Do I need a follow-up appointment?
  • Are there any activities I should avoid?
  • What symptoms should make me seek medical help again?
  • Who should I contact if I become unwell?

Don't be afraid to ask questions if anything is unclear.

You should normally receive a discharge summary outlining:

  • Why you were admitted.
  • The treatment you received.
  • Medication changes.
  • Follow-up arrangements.
  • Advice for recovering at home.

Keep a copy for your records and share it with your GP if needed.

Recovery can take time.

It's common to experience:

  • Ongoing fatigue.
  • Reduced energy levels.
  • Muscle soreness.
  • Difficulty returning to normal activities immediately.

Listen to your body and gradually return to your usual routine where possible.

Stay well hydrated, continue taking prescribed medications and attend any follow-up appointments.

When you're in pain or feeling unwell, it can be difficult to remember information or ask questions. If possible, ask a trusted friend, family member or carer to support you and advocate on your behalf.

Don't be afraid to ask questions, such as:

  • Has my personalised pain plan been reviewed?
  • What treatment is being recommended, and why?
  • What happens next?
  • When should I expect my next review?
  • Who can I contact if my symptoms worsen after I leave hospital?
  • Is my haematology team aware that I'm here?

Everyone living with sickle cell has the right to receive safe, timely and compassionate healthcare. Knowing your rights can help you feel more confident speaking up for yourself and ensure you receive the care you need.

While every hospital experience is different, there are national standards and guidance that healthcare professionals should follow when treating people with sickle cell.

Understanding these standards can help you know what to expect during hospital visits and what to do if your care falls below those standards.

Under the Equality Act 2010, people living with sickle cell may be entitled to reasonable adjustments because sickle cell can be considered a disability if it has a substantial and long-term impact on daily life.

Reasonable adjustments might include:

  • Prioritising access to warmth during hospital admissions.
  • Allowing flexible appointment times where appropriate.
  • Considering fatigue and pain when planning treatment.
  • Making communication accessible if you're unwell.
  • Supporting attendance at work or education through healthcare documentation.

Every person's needs are different, so adjustments should be based on your individual circumstances.

Unfortunately, some people living with sickle cell report feeling dismissed or not believed when attending hospital.

If this happens:

  • Stay calm where possible and clearly explain your symptoms.
  • Show your personalised pain plan if you have one.
  • Ask for the sickle cell specialist team or haematology team to be contacted.
  • Ask how long the expected wait for pain relief will be.
  • If you're unable to advocate for yourself, ask a family member or friend to do so on your behalf.

Remember that asking questions or requesting clarification is not being difficult—it's part of being involved in your own care.

Every NHS hospital has a Patient Advice and Liaison Service (PALS).

PALS can help if:

  • You're worried about your care.
  • You feel your concerns aren't being heard.
  • You need help resolving a problem during your hospital stay.
  • You need information about NHS services.

PALS aims to resolve concerns quickly without the need for a formal complaint.

PALS is your first point of contact if you have concerns about your NHS care or need help resolving an issue during your hospital stay.

If you're unhappy with the care you've received, you have the right to make a formal complaint.

Complaints can help hospitals identify areas for improvement and may prevent similar experiences happening to others.

When making a complaint:

  • Keep a record of dates and times.
  • Include the names of staff members where possible.
  • Explain what happened and how it affected you.
  • Describe what outcome you're hoping for.

You can usually complain directly to the hospital or through your local NHS complaints process.

Equality Advisory & Support Service (EASS)
Provides free advice and support if you believe you've experienced discrimination, including discrimination related to disability, race or other protected characteristics when accessing healthcare or other services.

Helpline: 0808 800 0082

Healthwatch England
The independent champion for people using health and social care services. Healthwatch can help you understand your rights, share your experiences and find local support.

NHS Constitution for England
Sets out your rights as an NHS patient, including access to healthcare, involvement in decisions about your care, confidentiality, dignity and how to raise concerns or complaints.

Patient Advice and Liaison Service (PALS)
Provides confidential advice, information and support for patients, families and carers. PALS can help resolve concerns, explain NHS services and guide you through the complaints process before a formal complaint is needed.

Parliamentary and Health Service Ombudsman (PHSO)
If you're unhappy with the outcome of an NHS complaint, the Ombudsman can independently investigate whether your complaint was handled fairly.

Helpline: 0345 015 4033

VoiceAbility
Provides independent advocacy to help people understand their rights, express their views and make informed decisions about their healthcare and social care.

Family and Relationships

Sickle cell doesn't just affect the person living with the condition.

It can affect partners, parents, children, carers, friendships, family planning decisions and emotional wellbeing.

Many people find these conversations difficult because they are rarely discussed openly.

This section aims to provide practical guidance, support and information to help you navigate relationships, family life and future planning with confidence.

Sickle cell is often misunderstood.

Many people have heard of it but don't understand how it affects daily life.

Helping others understand your experience can improve support and reduce stigma.

Helpful Topics To Discuss:

What Sickle Cell Actually Is
A genetic blood condition that affects red blood cells and how oxygen is carried around the body.

Why Pain Crises Happen
Pain crises occur when sickled blood cells block blood flow.

They are not caused by weakness, low pain tolerance or exaggeration.

Fatigue
Fatigue is one of the most common symptoms of sickle cell.

Many people describe it as exhaustion rather than simply feeling tired.

Why Symptoms Vary
No two people experience sickle cell in exactly the same way.

Some people experience frequent crises.

Others struggle more with fatigue, chronic pain or complications.

Invisible Symptoms
Not all symptoms are visible.

Someone may look well while experiencing:

  • Significant pain
  • Fatigue
  • Breathlessness
  • Brain fog
  • Emotional distress

One of the most important things many people living with sickle cell can do is understand their genotype.

Understanding your genotype can help you make informed decisions about future family planning.

What Is A Genotype?

Your genotype describes the type of haemoglobin genes you inherited from your parents.

Examples include:

  • AA
  • AS
  • AC
  • SS
  • SC

Why Does It Matter?

Knowing your genotype can help you understand:

  • Whether you have sickle cell disease
  • Whether you carry sickle cell trait
  • The risk of passing genes to future children

If you are considering having children, it is strongly recommended that both partners know their genotype.

Many people do not know their status.

Testing is simple and can usually be arranged through your GP.

Action Step

Ask your GP:

"I would like haemoglobinopathy screening and genotype testing."

Questions To Ask

  • Do you know your genotype?
  • Has your partner been tested?
  • Have you considered genetic counselling?

If One Parent Has Sickle Cell Disease (SS) And The Other Has No Sickle Cell Gene (AA)

Every child will inherit sickle cell trait (AS).

Children will not inherit sickle cell disease.

If One Parent Has Sickle Cell Disease (SS) And The Other Has Sickle Cell Trait (AS)

Each pregnancy carries:

  • 50% chance of sickle cell disease (SS)
  • 50% chance of sickle cell trait (AS)

If Both Parents Have Sickle Cell Trait (AS)

Each pregnancy carries:

  • 25% chance of AA
  • 50% chance of AS
  • 25% chance of SS


If You're Unsure

Speak to:

  • Your GP
  • Your Haematology Team
  • A Genetic Counsellor

Never make assumptions based on ethnicity, appearance or family history alone.

Testing is the only way to know for certain.

Genetic counselling helps individuals and couples understand inheritance and reproductive options.

A Genetic Counsellor Can Help You Understand

  • Your genotype
  • Your partner's genotype
  • Inheritance risks
  • Available testing options
  • Reproductive choices

How Do I Access Genetic Counselling?

Ask:

  • Your GP
  • Your Haematology Team
  • Your Clinical Nurse Specialist

for a referral.

Learn More:
NHS Genetic Counselling Information

Questions To Ask Before Starting A Family

  • Do we know our genotypes?
  • Have we considered genetic counselling?
  • What are the inheritance risks?
  • What testing options are available?
  • What support is available during pregnancy?

Having information does not make decisions for you.

It simply helps you make informed decisions.

If you have sickle cell disease and are considering pregnancy, speak to your healthcare team before trying to conceive if possible.

Why?

Pregnancy may require:

  • Additional monitoring
  • Medication reviews
  • Specialist appointments
  • Joint care between haematology and maternity services

Early planning can help ensure the best possible care.

Questions To Ask

  • Should I review my medications before pregnancy?
  • Do I need additional monitoring?
  • Which hospital will manage my care?
  • Should I see a specialist before trying to conceive?
Learn More

Many people living with sickle cell wonder:

  • When should I tell someone?
  • How much should I share?
  • What if they don't understand?
  • What if they're put off?

These concerns are completely normal.

When Should I Tell Someone?

There is no perfect time.

Some people share early.

Others wait until the relationship develops further.

The most important thing is that you feel comfortable.

What Should They Know?

They don't need a medical degree.

Start with:

  • What sickle cell is
  • How it affects you personally
  • What support might look like during a crisis


Remember

Sickle cell is part of your life.

It is not your entire identity.

The right people will want to understand and support you.

Antenatal Results and Choices (ARC)
Provides non-directive information and emotional support for people making decisions following prenatal testing or a diagnosis during pregnancy.

Helpline: 020 7713 7486
Email: info@arc-uk.org

Genetic Alliance UK
Provides information and support for people and families affected by genetic conditions, including guidance on genetic services and testing.

NHS – Screening for Sickle Cell & Thalassaemia
Information about carrier screening, newborn screening and the NHS Sickle Cell and Thalassaemia Screening Programme.

NHS – Sickle Cell Disease and Pregnancy
Information on planning a pregnancy, antenatal care, potential risks and the additional support available during pregnancy for women living with sickle cell disease.

NHS Genomic Medicine Service
Information about NHS genomic services, including access to genetic counselling and testing where appropriate.

Watching someone you care about live with sickle cell can be difficult. Family members, partners and friends often want to help but aren't always sure what to do.

One of the most common experiences shared by people living with sickle cell is feeling misunderstood or not believed, particularly during a pain crisis. Your support can make a real difference.

Supporting someone doesn't always mean having the answers. Sometimes the most valuable thing you can do is listen, believe their experience and be there when they need you most.

✓ Learn about sickle cell and how it affects them.

✓ Understand the common symptoms and possible complications.

✓ Learn to recognise the signs of a pain crisis and know when urgent medical help may be needed.

✓ Respect that symptoms can change from day to day and that fatigue and pain aren't always visible.

✓ Understand their personalised pain plan and how it supports their care.

✓ Attend healthcare appointments if they'd like you to.

✓ Help advocate for them during hospital admissions or when they feel unable to advocate for themselves.

✓ Offer practical support after hospital stays, such as shopping, meals or lifts to appointments.

✓ Be patient during recovery and understand that healing doesn't always end when someone leaves hospital.

✓ Check in regularly—sometimes a simple message asking how they're doing can mean a great deal.

Supporting someone living with sickle cell isn't about being perfect—it's about understanding, patience and listening. Every person's experience is different, and small acts of support can make a meaningful difference.

  • Pain isn't always visible.
  • Everyone experiences sickle cell differently, and symptoms can vary from day to day.
  • Fatigue can be just as challenging as pain.
  • Recovery often continues long after someone has left hospital.
  • They may not always have the energy or words to explain how they're feeling.
  • Plans may need to change at short notice due to pain, fatigue or illness.
  • Ask how you can help rather than assuming what they need.
  • Listen, believe their experience and avoid comparing it to someone else's.

Supporting someone living with sickle cell can be emotionally and physically demanding. Looking after your own wellbeing is just as important. Remember to make time for rest, seek support when you need it and prioritise your own mental health.

Carers Trust
Provides practical support, information and access to local services for unpaid carers looking after a family member or friend.

Phone: 0300 772 9600
Email: info@carers.org

Carers UK
Provides expert advice, information and practical support for unpaid carers, including guidance on benefits, employment, finances and wellbeing.

Helpline: 0808 808 7777
Email: advice@carersuk.org

Contact
Supports families caring for children with disabilities or additional health needs through advice, information and practical support.

Helpline: 0808 808 3555
Email: helpline@contact.org.uk

Family Lives
Provides confidential advice and support for parents and carers, helping families navigate everyday challenges and difficult times.

Helpline: 0808 800 2222

Hub of Hope
The UK's largest mental health support directory, helping you find local services and support based on your postcode.

Mind
Provides advice, information and support for anyone experiencing a mental health problem.

NHS Talking Therapies
Free NHS talking therapies for common mental health problems, including anxiety, depression, stress and low mood. Many services accept self-referrals.

Relate
Provides confidential counselling and relationship support for couples, families and individuals.

Sickle Cell Society – Family & Youth Services
Provides information, support and opportunities for children, young people, parents and families affected by sickle cell, including peer support and family-focused initiatives.

Phone: 020 8961 7795
Email: info@sicklecellsociety.org

YoungMinds
Provides information, advice and practical support for parents and carers who are concerned about a child's mental health or emotional wellbeing.

Carer's Allowance
A weekly benefit for eligible people providing at least 35 hours of unpaid care each week.

Carer's Credit
National Insurance credits that help protect your State Pension while you're caring for someone.

Council Tax Reduction
A reduction in your Council Tax bill for eligible households, including some carers.

Housing Benefit – Carer Premium
An additional amount that may be included in Housing Benefit for eligible carers.

Pension Credit – Carer Addition
An extra amount added to Pension Credit for eligible carers over State Pension age.

Universal Credit – Carer Element
An additional payment within Universal Credit for eligible people with caring responsibilities.

Trusted Resources and Signposting

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