Epilepsy12 &Us - voices from the RCPCH &Us network

Children and young people told us about their experiences of epilepsy care in our "clinic chats" - how they want to get in touch with services, the kind of support they want to receive, their best experiences and their ideas for the future. We worked with our Epilepsy12 Youth Advocates to produce a summary report.

My epilepsy specialist nurse was fabulous throughout my care, putting on social events for patients and families. Sadly, it’s not the same for everyone and now being in adult care, it’s a completely scary journey.

RCPCH &Us member

Epilepsy12 is a type of investigation across England and Wales. It aims to help epilepsy services be the best they can be for children and young people.

Our engagement work has given children, young people and families the chance to share what they think about epilepsy services. Between April and June 2018 we ran “clinic chats” to capture their views, with a special focus on schools, support for worries and face to face support.

RCPCH staff and our Epilepsy12 Youth Advocates collated the feedback and analysis into a summary report, available to download below.

Don’t be afraid to talk to us about the future. Don’t speak to me just about my condition, but speak to me about my life.

RCPCH &Us member