Today young people are delivering our #UnderstandMyEpilepsy petition to education ministers in England, Scotland, Wales and Northern Ireland.
The petition was signed by 16,163 people across the UK and is calling for children with epilepsy to be safe and included at school.
Government guidance needs to be made clearer so every child with epilepsy has an Individual Healthcare Plan (IHP) for school and gets the support they need.
Bethany from our Youth Voice Network delivered the petition in Northern Ireland and shared her school experience...
My seizures caused me to miss periods of school due to fatigue and hospital stays. Although I was academically smart, I was often behind in classes due to this.Bethany, Youth Voice Network Member
At secondary school I was often excluded from activities and sports that weren’t related to any triggers of mine. Teachers were untrained and often left me in an unsafe environment. Teachers often made jokes surrounding my absences and my grades and left me feeling isolated and alone. I was extremely bullied in secondary school due to my epilepsy and my school did not step in or resolve the issue.
Sadly, Bethany is not alone in facing exclusion at school…
Currently, 1 in 3 children with epilepsy do not receive the support they need to fully participate in school. Seizures are often missed or mistaken for inattentiveness, and school staff may be unaware of how to respond, leading to unnecessary exclusion from learning, sports, and trips.
For Kiya in Wales, school was somewhere her condition wasn’t understood, as she explains...
At my comprehensive school there wasn't much understanding of epilepsy, some equipment wasn’t suitable for me and there was no area for me to rest. I had regular seizures in school and constant increases of medication. Some subject teachers complained about the amount of time I missed in their lessons.Kiya, Youth Voice Network Member
Every child deserves an equal chance to succeed, to have their epilepsy understood and to be supported to reach their potential.
IHPs are a lifeline. They help school staff understand each child’s epilepsy, ensure their safety, and pave the way for full inclusion in every school activity.
Our petition aimed to shine a light on the vital importance of IHPs in school, and more than 16,000 of you agreed with us! Together we are calling for change - UK governments must ensure schools have an Individual Healthcare Plan (IHP) in place for every child with epilepsy.
The petition has now been delivered to education ministers in all four nations
- England: Secretary of State for Education, Rt Hon Bridget Phillipson MP
- Northern Ireland: Education Minister, Paul Givan MLA
- Scotland: Cabinet Secretary for Education and Skills, Jenny Gilruth MSP
- Wales: Cabinet Secretary for Education, Lynne Neagle MS
Thank You for Your Support!
Your support has been incredible, with over 16,000 signatures showing the UK governments how crucial this issue is. Let’s continue to push for the changes needed to ensure every child with epilepsy is safe and included at school.
You can still support us
Although the petition has closed, you can still support the #UnderstandMyEpilepsy campaign by adding your name to the campaign manifesto.