Online Guide for Schools available

Supporting young people with epilepsy: A guide for schools

It comes in response to a survey carried out by the organisation which indicated that four in 10 education professionals would not be able to help a student having an epileptic seizure.

On average epilepsy affects 112,000 children and young people across the UK, but two-thirds of those polled have had no training about how to support those with the condition.

The survey of 600 adults working in the education sector – including teachers, administrators, and catering assistants, was commissioned by charity Young Epilepsy, and highlighted the urgent need for education professionals to be better supported.

Two thirds of those polled have had no training about how to support the children with epilepsy in their care, including what to do in the event of a seizure.

A third said they wouldn’t know when to call for an ambulance in the event of a seizure – experts recommend you ring 999 if it lasts for more than 5 minutes or you know it’s their first seizure. Prolonged seizures can result in a potentially fatal condition known as status epilepticus.

Many of those polled were not aware of the different types of seizure a young person can experience. Three quarters were unaware falling to the ground and getting straight back up again could indicate that a young person is having a seizure, or experiencing strange tastes and smells (55 per cent), or staring blankly as if daydreaming (29 per cent).

Only 29 per cent knew that they should time the length of the seizure, only 17 per cent would protect them from hazards, and only 26 per cent knew to cushion their head – all essential actions to keep the young person safe.

A further survey of young people 356 young people with epilepsy and their parents, found 37 per cent of young people do not have an Individual Health Care Plan at school – these plans set out key information to ensure young people are safe and included in all aspects of school life.

A number of the young people have been unnecessarily excluded from activities or opportunities at school, purely due to their condition.

Catherine Hodder, Policy and Advocacy Manager at Young Epilepsy, said

“Epilepsy is one of the most common long term conditions in childhood and every young person’s experience of it is unique to them. It is crucial that schools have the information they need to keep a young person safe. This means knowing what can be the triggers for that individual, what to do if they have a seizure, and when emergency treatment may be needed.

Our research also shows that many young people with epilepsy have a significant difficulty in cognition or behaviour. It’s a consequence of epilepsy that’s rarely addressed when discussing the condition, but can have a profound effect on their educational development. It has become obvious to us that there’s a profound and urgent need for education professionals to have access to the information and practical tools they need to be able to better support the children with epilepsy who are under their care. That’s why we have created this new online resource, which contains essential information for anyone working with young people who have epilepsy.”


Commonly held mistaken beliefs were also prevalent in the OnePoll survey; six in ten respondents wrongly thinking that a person having a seizure can swallow their tongue, and 15 per cent incorrectly believing that flashing lights will always trigger an epileptic seizure.


Mark Devlin, Chief Executive of Young Epilepsy, said:

“We know that our colleagues working in any education setting are facing many challenges every day, and most are doing a fantastic job in ensuring that every child in their care is being fully supported. But these latest figures show that children with epilepsy are struggling to have their conditions fully understood by the people who are playing an essential role in their educational and emotional development.

It is our hope that this fantastic new online resource gives teachers the opportunity to learn more about epilepsy and allow the young people in their care to be fully supported to learn and be included in school life to the full.”


The creation of the guide, which has been generously supported by an educational grant from Veriton Pharma, has also received support from important education and health bodies.

Sharon White, Chief Executive of the School and Public Health Nurses Association (SAPHNA) said:

“We welcome this resource which provides much needed updated guidance and, in doing so, further raises awareness of epilepsy in young people.”

Kevin Courtney, Joint General Secretary of the National Education Union commented:

“We welcome this new resource which will help school staff ensure that pupils with epilepsy can participate in school or college life.”

Nicola Heenan and Amanda Hirst, on behalf of the Epilepsy Nurses Association (ESNA) said:

"School and learning can sometimes be a challenge for children and young people with epilepsy. This online guide is a concise and practical resource for all educational establishments, exploring diagnosis, treatment and other potential issues. Supporting a child with epilepsy in school is essential and this guide provides some excellent examples with useful documents, resources and links to sources of support."

The online guide is available here:

Supporting young people with epilepsy: A guide for schools


Epilepsy school support - Survey of families