
SCD AND SCHOOL
Some aspects of school can be hard to manage with sickle cell disease
but simple adjustments and considerations can make a big difference
Education, Health and Care In Schools
The information on this page has been adapted from the “Sickle Cell and Thalassaemia: School Education, Health & Care, A Guide to School Policy which was written by Simon Dyson. That booklet is based on research examining the experiences of young people with SCD in schools in England. Here, we summarise the information in the guide.
The guide states that recognising the importance of caring for young people with life-long illness is an important part of school inclusiveness. Section 100 of the 2014 Children and Families Act in England places a duty on school authorities to make arrangements for supporting pupils at school with medical conditions. Pupils with SCD fit into the provisions within the Act.
As people with SCD are not suited to hard manual work, it is important that they get a good education and receive sound careers advice.
School Absences
Schools and colleges need strong supportive frameworks on SCD to reduce absences. Studies show that pupils in schools who do not have strong supportive networks could miss weeks of schooling a year, mostly in short absences of 2-3 days at a time. Most pupils report that they do not feel supported by schools to catch up these absences and a minority of pupils have absences at or beyond levels defined by the government as persistently absent. It is important that pupils are not mislabled as truant and that their parents are not pressured to account for themselves for episodes of illness that are related to SCD.
People with SCD need to stay warm, eat a healthy diet, take moderate exercise but not to excess, rest when they are tired, drink plenty of liquids but not alcohol and seek medical advice if they have a fever. They need to keep up with their medications and vaccinations and life a stress-free life as much as possible. Employers can help people stay healthy without any cost to them. A few simple adjustments is all it takes.
Travelling to school can be a challenge as travelling to and from school is tiring. A person with SCD may not have a fully functioning spleen which leaves them vulnerable to respiratory infections when travelling in crowded public transport. Then there is the changeable weather and moving between warm and cold environments to consider.
People with SCD need to drink around 3 litres of water or non-alcoholic liquid each day. Schools can help by making sure they have access to a constant supply of fresh water at their desk. A child with SCD may have a kidney that cannot concentrate urine effectively so they need to pass large quantities of diluted urine and need water and ready access to toilet facilities at all times.
Tiredness and Physical Exercise
Young people with SCD may experience severe anaemia and feel tired, lethargic and unable to concentrate. They may feel tired to the point where they need to sleep and if they need regular blood transfusions, may feel more tired towards the end of the blood transfusion cycle. It is important that teachers do not mistake serious medical symptoms for laziness. Climbing stairs several times a day to move from one classroom to another in secondary school, is physically demanding for some young people with SCD. Schools can support these pupils by issuing a personal lift pass.
Schools need to listen to pupils when it comes to exercise. Young people with SCD need moderate exercise but must avoid hard, physical exercise involving strenuous exertion as this could trigger an SCD pain crisis. Schools must listen to pupils as they will come to know their own safe limits of physical exercise. It is important for schools to:
- Ensure that young people with SCD do not have to exercise in cold or wet weather or where their skin is exposed to a cooling wind.
- Let a young person stop exercising if they ask to be excused because of tiredness or pain.
One school highlighted for good practice in the guide arranged with their local swimming pool to have the temperature increased for swimming lessons for a class with a pupil with SCD so the young person could participate.
Education, Health & Care Plans
All young people with SCD in school should have education, health and care plans which are reviewed annually. Some young people may have multiple complications that affect different systems within their bodies so it is vital that schools include a specialist sickle cell nurse in drawing up the education, health and care plan as well as the young person themselves, and their parents.
The plan should include as a minimum:
- Preventive measures to keep the young person well at school.
- Arrangements for giving pain medication to the pupil.
- What constitutes an emergency and what to do.
- Key contacts, especially the consultant who is the key health professional caring for the pupil.
- A list of school staff (including secretaries, canteen staff, caretakers and teachers) who have attended a professional update on sickle cell. This list should be checked against the staff that the young person is likely to meet during their academic year.
Sickle Cell in the Curriculum
Schools can create a positive school ethos by making the curriculum relevant to the pupils. SCD is an inherited disease and the pattern of genetic inheritance involved in SCD is an integral part of the genetics section of the GCSE science curriculum.
The Sickle Cell Society has produced guidance on how sickle cell can be incorporated into various key stages of the national curriculum https://www.sicklecellsociety.org.
Pain
SCD is unpredictable, varies over time and is different for each person. Painful crises can come on suddenly and the pain can make a person unresponsive, uncooperative and moody. It is vital that schools develop a policy for supporting pupils when they are in pain. The care plan needs to be individual, with input from a teacher, school nurse, sickle cell nurse specialist, pupil and parents. It is important that it includes instructions for administering painkillers (who is responsible for administering, which painkillers and how decisions are made about which one to administer).
Teacher Awareness
All staff should be made aware of SCD and some schools include it in their teacher training days. Staff need to know what to do if the pupil has a painful crisis and how to recognise the symptoms of a stroke in young people with SCD. They need to learn to listen to the young person if they say they are feeling ill. Schools should implement robust systems for relaying information when the pupil has a supply teacher or when they change class or school. Schools can also make sure there is a safe area available for the young person to recover and take time out so that they can return to their studies later in the day.
Medication
A key part of the Individual Health and Care Plan should include arrangements for giving medication and agreed procedures for assessing the severity of the pain. The key is to listen to the young person. Where pain is mild or moderate, the aim should be to keep the pupil in school by combining pain medication with rest and time out in a safe space so they can return to lessons the same day. A blanket policy on not administering drugs or having a young person collected as an outcome of administering medication, will effectively be an exclusionary policy for the young person with SCD.
Challenging Discrimination
Schools can ensure that SCD is discussed as part of Personal, Health and Social Education and can make sure that other pupils are challenged if they exhibit any discriminatory views.
Example of the Sickle Pain Scale in the Worker’s Individual Support Plan

THIS SCALE IS FOR ILLUSTRATIVE PURPOSES ONLY AND ANY SCALE USED SHOULD HAVE THE APPROVAL OF THE YOUNG PERSON’S HOSPITAL CONSULTANT.
(this page has been adapted from ” Sickle Cell and Thalassaemia: Education, Health & Care, A Guide to School Policy” by Simon Dyson (sdyson@dmu.ac.uk)