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The Beyond Pain Foundation

Conditions we support

Conditions guide

Sickle cell disease

Sickle cell disease is an inherited blood condition. Red blood cells become hard and curved, and can block small blood vessels. This causes sudden, severe pain called a sickle cell crisis, as well as tiredness and long-term damage to the body. This guide explains the types, what happens in a crisis, the care you should expect, and your rights at work.

People in England with sickle cell
About 17,000
Babies born with it each year
About 250
A crisis can last
Hours to weeks
Pain relief in hospital within
30 minutes

This guide is general information, not medical advice. Medicines and treatments must be prescribed or recommended for you by a doctor or pharmacist. We do not give doses here.

What sickle cell is

Sickle cell disease affects haemoglobin, the part of red blood cells that carries oxygen. In sickle cell, red blood cells can become stiff and shaped like a crescent or sickle. They die early, which causes anaemia, and they can get stuck in small blood vessels. When blood flow is blocked, the body is starved of oxygen and this causes severe pain and damage.

It is inherited. A child is born with sickle cell disease when they get a sickle cell gene from both parents. If both parents are carriers, there is a 1 in 4 chance with each pregnancy. You can't catch it.

It is the most common inherited blood condition in the UK. It is more common in people with African, Caribbean, Middle Eastern, Mediterranean or South Asian family backgrounds. NHS England estimates about 17,000 adults and children in England live with it.

It is lifelong. With good care, many people live full lives, work and have families.

Types of sickle cell

The type depends on which genes you inherited. Your specialist team will tell you which type you have.

Sickle cell anaemia (HbSS)

The most common and usually the most severe type. You inherited a sickle gene from both parents.

Haemoglobin SC (HbSC)

One sickle gene and one haemoglobin C gene. Often milder, but it can still cause crises and is more likely to affect the eyes.

Sickle beta thalassaemia

One sickle gene and one beta thalassaemia gene. It can be mild or as severe as HbSS, depending on the type.

Other rarer types

Such as HbSD and HbSE. How they affect you varies.

Sickle cell trait (carrier)

One sickle gene and one normal gene. This is not sickle cell disease and usually causes no symptoms, but tell doctors before an anaesthetic. Carriers can pass the gene on.

Symptoms and crises

Day to day, many people have tiredness and anaemia. Some also have ongoing pain. Other symptoms include:

  • Sudden severe pain
  • Tiredness and weakness
  • Pale skin or yellow eyes
  • Swollen hands and feet
  • Frequent infections
  • Shortness of breath
  • Joint and bone pain
  • Priapism (a painful erection)
  • Leg ulcers
  • Problems with sight

A sickle cell crisis is when you suddenly get severe pain or other serious symptoms. Pain is most often in the back, chest, arms, legs or joints. Common triggers include:

  • Cold, or sudden temperature changes
  • Not drinking enough
  • Infections and fever
  • Very hard exercise
  • Stress
  • Alcohol and smoking
  • Low oxygen, such as at altitude

Many crises happen without any clear trigger. A typical painful crisis goes like this:

  1. Minutes to hours

    Early pain

    Pain starts or builds. Start your home plan straight away: painkillers, fluids, warmth and rest.

  2. Hours

    Getting worse

    If home pain relief isn't working, or you have warning signs, go to hospital or your sickle cell day unit.

  3. Days

    Hospital treatment

    Strong painkillers, such as morphine, and fluids. Many people stay in hospital for a few days.

  4. Days to weeks

    Recovery

    Pain eases, but tiredness and weakness can last. A phased return to work can help.

Timings are typical ranges, not exact rules. The NHS says a crisis can last hours, days or weeks.

When to get urgent help

Some complications of sickle cell can be life-threatening. Don't wait to see if they get better.

Call 999 or go to A&E if you have

  • severe pain that your home painkillers aren't controlling
  • chest pain, a cough or difficulty breathing, which can be acute chest syndrome
  • a high temperature of 38C or more
  • an erection that is painful or lasts more than 2 hours
  • sudden weakness, numbness, slurred speech, confusion or drowsiness, which can be a stroke
  • sudden changes to your sight
  • a suddenly swollen tummy, or very pale skin or lips

Call your sickle cell team or NHS 111 if

  • you are starting a crisis and aren't sure what to do
  • you are being sick or have diarrhoea and can't keep fluids down
  • you have a severe headache
  • you have signs of an infection
  • you are more tired or breathless than usual

See your GP or specialist if

  • you are having crises more often
  • you have ongoing pain in a hip or shoulder
  • you have a leg ulcer that isn't healing
  • you need your vaccinations or antibiotics reviewed
  • you are planning a pregnancy or travel abroad

If you have a sickle cell day unit or a direct-access ward, your care plan should tell you when to use it instead of A&E.

Your care in hospital

National guidance sets out the care you should get when you arrive at hospital in a painful crisis. Knowing it can help you, or someone with you, ask for it.

30 minutes

NICE's quality standard says you should have a pain assessment, a clinical assessment and suitable pain relief within 30 minutes of arriving at hospital. Staff should take into account any painkillers you have already taken.

  • Your pain should be checked again regularly, and treatment stepped up if it isn't working.
  • You should be watched for serious complications, such as acute chest syndrome.
  • Staff should respect your knowledge of your own condition and what has worked for you before.
  • Your individual care plan, if you have one, should be followed.

If you aren't getting pain relief in time

Calmly show your care plan or emergency card, say you are in a sickle cell crisis, and ask for the haematology team to be contacted. Afterwards, you can raise concerns with the hospital's Patient Advice and Liaison Service (PALS). The Sickle Cell Society can also advise. Reports such as the 2021 "No one's listening" inquiry found many people waited too long and felt they weren't believed.

Diagnosis and specialist care

Most people in the UK are diagnosed as babies through the newborn heel prick blood test. Pregnant people are offered screening early in pregnancy, ideally before 10 weeks. Anyone can ask their GP for a simple blood test to find out if they are a carrier.

Your care should be led by a specialist haematology team, usually linked to a specialist sickle cell centre. You should have:

  • An annual review with your specialist team.
  • An individual care plan that says what pain relief works for you and what to do in a crisis.
  • Regular checks for complications, including your eyes, lungs, heart, kidneys and, in children, stroke risk.

Treatments and medicines

Painkillers at home

Pharmacy, or prescription from your team

Paracetamol and ibuprofen for milder pain. Your team may prescribe stronger painkillers for home. Agree a home pain plan with them.

Strong painkillers in hospital

Hospital or day unit

Opioids such as morphine, often with fluids and oxygen if needed. Usually given for a few days during a severe crisis.

Hydroxycarbamide

Started by your specialist team

A daily medicine (also called hydroxyurea) that can reduce how often you have crises. It usually takes at least 3 months to tell if it is working. You need regular blood tests. It must be stopped well before trying for a baby, so talk to your team about contraception.

Antibiotics and vaccines

GP or specialist team

Sickle cell affects the spleen, so infections can be serious. Most people take a daily antibiotic, usually penicillin, and need extra vaccines, including a yearly flu jab.

Folic acid

Prescription

Sometimes prescribed to help your body make new red blood cells, especially if your diet is limited.

Blood transfusions

Hospital or specialist centre

A top-up transfusion, or a red cell exchange where sickle blood is swapped for donated blood. Used for severe anaemia, acute chest syndrome and to lower stroke risk. Some people have them on a regular schedule. Frequent transfusions can build up iron, which is treated with chelation medicine.

Transplants, gene therapy and surgery

  1. Stem cell or bone marrow transplant

    Recovery takes many months

    Currently the only established cure. It carries serious risks, so it is usually only considered for people with severe sickle cell, and most often for children with a matched donor, usually a brother or sister.

  2. Gene therapy (exa-cel, Casgevy)

    Available on the NHS since 2025

    Your own stem cells are collected, edited in a laboratory and given back to you, after strong chemotherapy. It is for people aged 12 and over with repeated severe crises, who would be suitable for a transplant but have no matched donor. It is given at specialist NHS centres in London, Manchester and Birmingham.

  3. Surgery for complications

    Varies by operation

    Blocked blood flow can damage the hip or shoulder joint (avascular necrosis). This may need physiotherapy and, sometimes, a joint replacement. Gallstones are common and the gallbladder may be removed by keyhole surgery. Always tell the surgical team you have sickle cell: you may need a transfusion, extra fluids and oxygen around an operation.

Self-help

During a crisis

  • Follow your care plan and take painkillers early
  • Drink plenty of fluids
  • Keep warm and use a heat pad. Don't use ice
  • Try distraction, breathing exercises or gentle massage
  • Know when to go to hospital, and have a bag ready

Staying well

  • Drink water regularly through the day, more in hot weather
  • Dress warmly and avoid sudden cold, including cold swimming pools
  • Keep active, but avoid exhausting exercise
  • Avoid smoking and keep alcohol low
  • Keep up with antibiotics and vaccines, and check with your team before travel

Getting the best care

  • Ask for an individual care plan at your annual review, and make sure your local A&E can see it.
  • Carry it with you. Keep a copy of your care plan, emergency card or hospital passport, a list of your medicines and your specialist team's contact details, on paper and as a photo on your phone.
  • Find out about fast-track options. Some hospitals have day units or direct-access wards where you can bypass A&E in a crisis.
  • Keep a pain diary. Record crises, what helped and how long they lasted. It helps your team adjust treatment.
  • Take someone with you to hospital if you can. They can speak up when you are in too much pain to.
  • Know the 30-minute standard, and raise it calmly if you are left waiting.
  • Ask for a second opinion or a referral to a specialist centre if you feel your care isn't right.

Sickle cell and work

Sickle cell disease is likely to count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This applies if it has more than a minor effect on your daily life and has lasted, or is likely to last, at least 12 months. Conditions that come and go count. The law looks at how you would be without treatment.

If it does, and your employer knows or should know about it, they must make reasonable adjustments. Adjustments might include:

  • A warm workspace, away from draughts and air conditioning
  • A desk heater or heated seat pad
  • Water at your desk and easy toilet access
  • No work in cold places or outdoors in winter
  • Flexible hours and regular breaks
  • Working from home after a crisis
  • Time off for clinics and transfusions
  • A phased return after a hospital stay
  • Less heavy lifting and physical strain
  • Flexibility on sickness absence linked to crises

Access to Work is a government grant that can pay for equipment, travel to work and other support. For advice on your rights, contact Acas or Citizens Advice.

At least 15 steps have to happen in hospital before someone in a crisis gets proper pain relief, an NHS England study found. A clear care plan can make many of them faster. (NHS England, 2025)

Benefits

If you can't work for a while, you may get Statutory Sick Pay from your employer. Depending on how sickle cell affects you, you may also be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, Universal Credit or Employment and Support Allowance. Turn2us and Citizens Advice can help you check.

How The Beyond Pain Foundation can help

If NHS waits are too long, or the help you need isn't available to you on the NHS, we may be able to fund:

  • Physiotherapy or hydrotherapy for joint damage or ongoing pain
  • A pain management programme or psychological support for living with pain
  • A TENS machine or heat therapy recommended by your doctor or physiotherapist
  • Workplace or home equipment, such as a heated seat pad, a supportive chair or a home working setup
  • Mobility aids if a hip or other joint has been damaged
  • Travel to a specialist sickle cell centre

We can't pay for everyday living costs, such as heating bills, or for treatment you have already paid for. Always get a written quote to include with your application.

Apply for funding Check the requirements

Support and sources

Sickle Cell Society

Information and support charity

Helpline 020 8961 7795, Monday to Friday, 9am to 5pm. Also advocacy, mentoring and support groups.

sicklecellsociety.org

The Red Cell Network

NHS specialist network (UCLH)

A detailed guide for patients on living with sickle cell, from an NHS specialist haemoglobinopathy network.

uclh.nhs.uk/theredcellnetwork
Sources for this guide

Last reviewed: October 2026.