Epilepsy: A third of students not getting in-school support

Written by: Pete Henshaw | Published:
Image: Adobe Stock

A third of children with epilepsy are not getting the support they need to participate fully in school life, with many not even having an Individual Healthcare Plan in place, a survey of families has revealed.

Epilepsy can have a significant impact on a child’s experience of school. Students may depend on staff to recognise and respond to seizures, but also to understand the wider impact that the condition can have on learning and behaviour.

However, a survey conducted by the charity Young Epilepsy and involving more than 1,000 families finds that 36% feel they do not get proper in-school support for their children. The survey was based on experiences during the 2021/22 academic year.

It is estimated that 112,000 children and young people in the UK are living with epilepsy. It is one of the most common long-term conditions that affects children.

Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. This disruption causes seizures. There are more than 40 different types of seizure. In most cases, epilepsy is well managed and seizures are controlled, but it is a serious condition and can be life-threatening.

Schools are required to have policies in place to ensure that children with medical conditions such as epilepsy get the support they need for full participation in school life.

According to the statutory guidance (DfE, 2014), every child with epilepsy should have an Individual Healthcare Plan for school, setting out information about their condition and the support they need to be safe and included at school.

However, the findings show that 44% of young people with epilepsy do not currently have an IHP in place, meaning staff do not know how to respond to problems, including potential seizures, or what wider support they need at school.

Even for students who did have an IHP, 64% of these did not include how epilepsy affected their learning and 26% had not been reviewed in the last 12 months.

Young Epilepsy says that without proper support and understanding, students with the condition end up being “simply left out” of activities that they are perfectly able to take part in.

Indeed, 21% of the young people in the survey reported being excluded from activities and opportunities at school, such as residential trips, prom, and school photos.

In one example from the survey, a primary pupil was unable to take part in the end of year 6 play due to flashing lights being used in the set. In another example, a student was not allowed to do any PE for the entire year even though he had permission from his doctors and medical team. Others have been banned from school trips, even small local outings.

Young Epilepsy has shared its findings with the Department for Education and is calling for the statutory guidance to be strengthened to make sure that all children with epilepsy have IHPs at school and that schools are required to publish their policies for supporting children with medical conditions on their website.

The charity’s research reveals plenty of examples of good practice where schools work hard to include children with epilepsy, where IHPs are in place and read and understood by staff, and where wider school activities are inclusive – showing what is possible.

Young Epilepsy supports children and young people with the condition through outreach services, training for professionals and campaigning. It has a free online guide with information for education settings on supporting young people with epilepsy to ensure they are safe and included in all aspects of school life (see below).

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