SICKLE CELL IN 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 For Sickle Cell In Schools
This page provides information adapted from “Sickle Cell and Thalassaemia: School Education, Health & Care, A Guide to School Policy,” written by Simon Dyson. The guide draws on research into the experiences of young people with Sickle Cell Disease (SCD) in schools across England. Below, we summarise the key points from this important resource.
The guide highlights that caring for children with lifelong illnesses, including SCD, is essential for an inclusive school environment. According to Section 100 of the 2014 Children and Families Act, England, school authorities must support pupils with medical conditions. Pupils with SCD are specifically included under these legal provisions.
Hard manual work is not suitable for individuals with SCD. It is vital that they receive a strong education and effective careers advice. This helps ensure that young people with Sickle Cell Disease can achieve their full potential in school and beyond.
Sickle Cell And School Absences
Schools and colleges require strong supportive frameworks for Sickle Cell Disease (SCD) to help reduce pupil absences. Research shows that students without effective support may miss several weeks of school each year. Often this consists of repeated short absences of 2-3 days. Many pupils report a lack of support from schools when catching up on missed work. A minority of students even reach or exceed the government’s threshold for persistent absence.
It is crucial that pupils with SCD are not mislabelled as truant. Schools should avoid placing undue pressure on parents to explain absences that are directly related to Sickle Cell Disease.
To maintain their health, people with SCD need to stay warm. They also need to eat a balanced diet, and engage in moderate exercise without overexertion. Rest is important when they feel tired, and they should drink plenty of fluids while avoiding alcohol. Seeking medical advice if a fever develops is essential. Keeping up with prescribed medications and vaccinations, and managing stress, further supports pupil wellbeing and helps prevent unnecessary absences.
Travelling with Sickle Cell in School
Travelling to and from school can present significant challenges for students with Sickle Cell Disease (SCD). The journey itself is often tiring, and individuals with SCD may have a compromised spleen, making them more vulnerable to respiratory infections, especially when using crowded public transport. Exposure to changeable weather and frequent transitions between warm and cold environments can also increase health risks for these pupils.
Proper hydration is essential for people with SCD, who should drink around three litres of water or other non-alcoholic fluids daily. Schools play a vital role in supporting these students by ensuring they have constant access to fresh water at their desks. Because some children with SCD have kidneys that cannot concentrate urine effectively, they need to pass large volumes of diluted urine. As a result, it is important that schools provide easy and consistent access to toilet facilities throughout the day.
Tiredness and Physical Exercise in Children with Sickle Cell In School
Young people with Sickle Cell Disease (SCD) often experience severe anaemia, which can lead to extreme tiredness, lethargy, and difficulty concentrating. Fatigue may become so pronounced that students need to sleep during the school day. Those who require regular blood transfusions may feel even more exhausted towards the end of their transfusion cycle. It is essential that teachers recognise these symptoms as serious medical issues and do not mistake them for laziness.
Navigating secondary school can be physically demanding for pupils with SCD, especially when they must climb stairs multiple times a day to move between classrooms. Schools can support these students by providing a personal lift pass, making it easier for them to access different areas of the building.
Listening to pupils with SCD is crucial when it comes to physical activity. While moderate exercise is beneficial, strenuous or intense physical activity can trigger an SCD pain crisis and should be avoided. Schools must respect pupils’ knowledge of their own physical limits and work with them to ensure safe participation in 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
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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 includes arrangements for giving medication and procedures for assessing pain severity. 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)
