Young people are at the heart of everything we do. And last week we proudly welcomed Youth Voice Network members to Parliament to meet MPs and Peers to push for better epilepsy support in schools – including the urgent need for every child with epilepsy to have an Individual Healthcare Plan (IHP).
The landmark event at the House of Commons centred around youth voices sharing their experiences of navigating school life with epilepsy directly with their MP. These personal stories highlighted the reality behind the statistic: 1 in 3 children with epilepsy are not supported to participate fully at school.
The government will soon publish plans to make schools more inclusive. It’s essential that young people with epilepsy aren’t left out of the conversation.
Our Understand My Epilepsy campaign message was clear – every child with epilepsy should have an Individual Healthcare Plan (IHP).
To each young person that shared their personal story with parliamentarians, we thank you. Our role was to create the opportunity, but it was their voices that led the way.
We’re proud of Youth Voice Network members Milla and Julia, who shared powerful stories about their school journeys and the urgent need for greater awareness and understanding of their epilepsy.
Milla shared her thoughts ahead of delivering her speech...
I'm looking forward to Parliament, just because I know it'll have an impact, what I say. It was really easy to create this speech because it all came form my past experience and from my heart. The nerves are definitely there but...I know I'm doing it for a really good cause and my speech will hopefully make a difference.Milla, Youth Voice Network Member
Heartfelt insight into the realities faced by both primary and secondary school students came from Learning Support Assistant, Ellie Griffiths, who shared the importance of understanding a child’s epilepsy beyond just its medical impact. Ellie’s school perspective reminded us why wider awareness and inclusive support are so vital in schools.
Thank you to Rt Hon Claire Coutinho MP for hosting us, and to Baroness Jane Ramsey, our former Chair of Trustees, and Mark Devlin, our CEO, for their inspiring and supportive words.
And an enormous thank you to everyone who joined us – young people, families, MPs, Peers, Trustees, and staff – thank you for making the day so impactful.
We will continue to drive the conversation across all four nations to ensure that every child living with epilepsy is safe and included at school.
Discover our FREE classroom resources to help build awareness, understanding and inclusion across schools for young people with epilepsy. Our videos, exercises and other resources are perfect to fill tutorial sessions, prompt a discussion in Citizenship, or have some fun on Purple Day.
For more information on Individual Healthcare Plans, browse our Guide for Schools.
