Young boy looks seriously at camera

Launch day: sign our petition!

The petition is our rally cry to demand the government takes action to ensure that schools have an Individual Healthcare Plan in place for every child living with epilepsy. 

Sign the petition

Schools in the UK are already required to have policies in place to ensure that children with epilepsy (and other long-term conditions) get the support they need for full participation in school life.   

Petition - young people rallying - together let's demand change messaging

One of the most effective tools to achieve this is an Individual Healthcare Plan (IHP), setting out information about their condition and the support they need to be safe and included at school.   

Yet for many children and parents, the system fails, as statistics show that 1 in 2 of young people with epilepsy don’t currently have an Individual Healthcare Plan (IHP).   

Without an IHP seizures are being missed or mistaken for not paying attention. School staff are unaware of what to do when a seizure happens. Children are unnecessarily excluded from learning, sports and trips.

Current guidelines simply do not go far enough to ensure this vital tool is put in place for every child. Our petition aims to change that and insist that governments take responsibility for ensuring that schools have a current IHP in place for every child with epilepsy.

Petition - school classroom with kids hands up and teacher at the front.

Our school support survey found worrying disparities across the UK in school policies and support for young people living with epilepsy. With your help we can change that! 

1 in 3 young people or parents reported not getting the support they need for full participation in school life.  

Children like 11-year-old Ruben are let down by an inadequate system in which their epilepsy and the impact on their lives is often misunderstood. 

I had to leave the school that I loved. It hurt me. I just wasn't treated as fairly as the other students.
Ruben, 11 years old 
Petition - quote 'I had to leave the school I loved. It hurt me.'

Ruben’s seizures were mistaken for daydreaming and after reports of behaviour issues and sanctions from his school, he ultimately had to leave mainstream school and is now homeschooled.   

Ruben explains, ‘I left because my teachers just didn't get my epilepsy. I have absence seizures which means I will lose my train of thought. I stare blankly for about 10 seconds, maybe five, depends.  

Some of my teachers would think that I was just daydreaming. I would get detentions and sanctions and stuff, and I'd miss out on play time. I just wasn't treated as fairly as the other students.’  
Join us in fighting for change and help us ensure that every child living with epilepsy is safe and included at school. 

Sign the petition now

Share the petition and help us reach as many people as possible.

Find out more about our #UnderstandMyEpilepsy campaign.

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Read about the experiences of young people living with epilepsy and learn more about the #UnderstandMyEpilepsy campaign

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I am Ruben

Meet Ruben, one of the heroes of our #UnderstandMyEpilepsy Campaign. Ruben is 11 and experiences Absence Seizures. For Ruben this has meant that he is now home schooled as his teachers didn't understand his epilepsy and the challenges that he faced.

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I am Bea

Meet Bea, one of the heroes of our #UnderstandMyEpilepsy Campaign. Bea is 15 and experiences focal seizures. For Bea this has meant that her teachers and students at school don't understand her epilepsy and the challenges that she faces.

Find out more

Understand My Epilepsy

#UnderstandMyEpilepsy campaign is led by young people with epilepsy. We work with them; listen to them, and with them we will amplify their stories. Working together we will take their voices to the decision-makers, and make them sit-up and listen.