About Sickle Cell Disease
Sickle cell disease (SCD) is a group of inherited blood disorders that affect haemoglobin, the protein in red blood cells that carries oxygen around the body.
In sickle cell disease, red blood cells can become stiff and sickle-shaped (like a crescent moon) instead of flexible and disc-shaped. These sickle cells can block blood vessels, causing episodes of severe pain known as sickle cell crises. The cells also break down more quickly than normal, leading to anaemia.
SCD is the most common serious genetic condition in England. It primarily affects people of African, Caribbean, Middle Eastern, South Asian and Mediterranean heritage. All babies born in England are screened for SCD as part of the newborn blood spot test. With good management and support, children with SCD can attend school regularly and achieve well. An Individual Healthcare Plan is essential.
Key Features of Sickle Cell Disease
- Sickle cell crises (vaso-occlusive crises): Episodes of severe pain, most commonly in the arms, legs, back, abdomen and chest. These can last from hours to several days and may require hospital treatment.
- Chronic anaemia: Leading to persistent tiredness, reduced stamina and difficulty concentrating.
- Increased susceptibility to infections: Due to spleen damage; many children take daily penicillin.
- Stroke risk: Children with SCD have an increased risk of stroke and may have regular transcranial Doppler scans.
- Delayed growth and puberty: May affect some children.
- Frequent hospital appointments and admissions.
Common Triggers for Sickle Cell Crises
Understanding and managing triggers is an important part of supporting a pupil with SCD:
- Cold: Cold temperatures, draughts, getting wet in rain, cold swimming pools and air conditioning
- Dehydration: Not drinking enough fluids
- Overexertion: Excessive physical activity without rest
- Stress and anxiety
- Infection and illness
- Sudden changes in temperature
- High altitude
Classroom and School Strategies
Day-to-Day Management
- Ensure the pupil has unlimited access to water at all times and encourage regular drinking throughout the day
- Allow unrestricted access to the toilet; the pupil may need to go more frequently
- Keep the pupil warm; avoid seating near draughts, open windows or air conditioning vents
- Allow the pupil to wear additional layers if cold
- Administer pain relief as specified in the IHP (usually paracetamol; avoid ibuprofen unless the medical team advises otherwise)
- Be alert to signs of pain or illness and respond promptly
- Store and administer medication (e.g. penicillin, folic acid) according to the IHP and medicines policy
In the Classroom
- Be aware that chronic anaemia causes tiredness and reduced concentration; adjust expectations accordingly
- A pupil in the early stages of a crisis may be in significant pain while appearing outwardly normal
- Allow rest breaks if the pupil is fatigued
- Be flexible with deadlines and homework during or after a crisis or hospital admission
- Provide catch-up support and access to online learning during absences
- Monitor educational progress and intervene early if gaps develop due to missed learning
Physical Education
- Encourage participation; regular, moderate exercise is beneficial
- Allow the pupil to pace themselves, take breaks and stop if in pain
- Ensure access to water during and after exercise
- Be cautious with outdoor PE in cold or wet weather; provide indoor alternatives
- Swimming may be problematic if the water is cold; check with parents and the IHP
- Avoid activities at high altitude or in extreme heat without medical advice
Emotional and Social Support
- Be sensitive to the emotional impact of living with a chronic, painful condition
- Support social connections and friendships, particularly after periods of absence
- Educate staff and peers about SCD to reduce misunderstanding (with parental consent)
- Provide access to pastoral support or counselling
- Be aware of the stigma that some families may have experienced
Further Information and Resources
Sickle Cell Society provides schools guidance, training resources and family support.
NHS information on sickle cell disease offers accessible medical information.