How schools can support pupils with sickle cell disease

As Sickle Cell Awareness Month (September) draws to a close, school leaders need to understand how the condition can affect pupils at school, and make sure that their policies are offering the right support

Mary Isokariari

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Sickle cell disease (SCD) is one of the most common genetic conditions in the world. It affects around one in 2,000 of all babies born in England.

People with SCD produce unusually shaped red blood cells. They can cause problems because they do not live as long as healthy blood cells and they become stuck in blood vessels. The disorder can cause episodes of severe pain known as "crises" which can require hospital treatment and can even cause death without the right care.

SCD may have a disruptive influence on the educational needs of a school child. Teachers may not always be aware that a child has it or not know how to support the child. 

Dr Lola Oni, a senior specialist nurse consultant at Brent Sickle Cell and Thalassaemia Centre, says school leaders need be educated about the condition as "many children hide that they are in a crisis."

“Teachers care about the wellbeing of their pupils. However, if they don’t know about sickle cell then they won’t be empathetic and can’t understand why a child is ill.

“If the child can’t walk or is having trouble lifting their arms and the teacher isn’t aware of the SCD then they might assume the child is being difficult for not wanting to go outside."

Whole-school policy

However, Simon Dyson, a professor of applied sociology at De Montfort University with a lifelong interest in studying the social dimensions of SCD, believes that the responsibility for improving support for children with SCD should not lie with classroom teachers, but with those who devise school policies.

“My advice is that although teachers do need to know some basics about sickle cell, the key lies at the level of school policy, not at the level of raising awareness with individual teachers,” he says.

What he proposes is a "policy-based approach that recognises teachers are overwhelmed and that what is needed is a change in the social environment of the school that supports young people with SCD 'in the background', rather than relying on teachers remembering details of SCD.”

To help with this, Dyson and his team have produced a Guide to School Policy on Sickle Cell, which you can download from Tes. 

And if you know that a child in your school has SCD, these tips from the Sickle Cell Society will help you to put in place the support they need.

1. Water

Ensure the pupil is well hydrated to reduce the likelihood of becoming ill. Do not restrict drinking water in class. Any shared water fountain should be cleaned regularly to reduce the risk of infection.

2. Toilet breaks

People with SCD cannot concentrate urine readily, therefore they produce large quantities of dilute urine and need to go toilet more often. Allow frequent toilet breaks. 

3. Tiredness

People with SCD may experience severe anemia and may feel tired or lethargic and unable to concentrate in class. It is important for teachers to not mistake this as laziness. Climbing the stairs or walking between classes can tire them out. Encourage them to rest as much as possible. In some cases, it may be appropriate for the school to issue the child with a personal lift.

4. Physical exercise

Children with SCD may lack the energy to do sporting activities or be experiencing joint pain. As a result, they should not be pushed beyond their limits and forced to do activities in the cold, wet or hot weather that could precipitate a sickle cell crisis. Listen to the child to understand the safe limits of physical exercise and follow advice from specialist medical teams.

5. Temperature

Young people with SCD are advised not to become cold. Schools should work with the young person to establish agreed warmer clothing for indoor use. Make sure they are not sat next to a window or made to go outside in cold, rainy or windy weather during breaks.

If you are concerned about a pupil’s wellbeing, then you can seek advice from the following organisations:

The Sickle Cell Society

Organisation for Sickle Cell Anaemia Research

Sickle Cell Young Stroke Survivors

National Health Sickle Cell and Thalassaemia Service Screening Programme

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Mary Isokariari

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