Understand my Epilepsy

Because of you, your elected representatives have contacted government ministers, local authorities, and asked questions in parliaments across the UK to help improve school support for children with epilepsy.

Read some tips for replying to your elected representative.

A young person led campaign

The Understand My Epilepsy campaign is led by young people with epilepsy. We listen to them and work with them to amplify their stories.  Working together we will take their voices to the decision-makers and make them sit-up and listen.

Your voice can make people sit up and listen. Led by the voices of young people with epilepsy, we are asking all schools, colleges and universities to keep young people like you safe and included.

Every child with epilepsy deserves to be safe and included at school

Children left feeling lonely, isolated and rejected. Unnecessarily excluded from opportunities at school and struggling to keep up with their classmates.

Shockingly, 1 in 3 children with epilepsy like Ruben are left without the crucial support they need at school.

Enough is enough! It's time for action. Together, let's demand change. Every child deserves an equal chance to succeed. Understand their epilepsy and help them reach their potential.

See the results of our epilepsy support at school survey

Why is epilepsy unique for everyone?

Epilepsy is not a single condition; it can start at any age and there are many different types.

There is only one similarity, and that is everyone with epilepsy has seizures, but there are many different types of seizure and what happens to a person during a seizure can vary enormously.

What happens after a seizure also varies from person-to-person. Some people may need a moment to compose themselves and then they can pick-up where they left off, studying, working, or playing a sport. Other seizures may mean the brain and body needs more time to recover and they may need to sleep for a few hours or even a few days. 

Seizure triggers and anti-seizure medication side effects also play an important role in defining an individual’s support needs.  Seizure triggers vary widely, from lack of sleep and stress, to missing meals, being unwell and more. Some medications can cause drowsiness and/or dizziness, they can affect memory, learning and attention.

Quite simply, there is no single way to support a child or young person with epilepsy. But there are ways to understand what they need to be safe and included. 

Learn more about epilepsy

Understanding someone with epilepsy means understanding their seizure type, their triggers, their medication side-effects, the impact on their learning. Understand their epilepsy and support them to be safe and included at school.