Young Voices, Real Change:
How the Youth Voice Network Helped Redesign NHS Hull’s Epilepsy Transition Booklets
At Young Epilepsy, we believe that young people should be at the heart of everything we do. That’s why we’re proud to share how the Youth Voice Network helped shape a new set of NHS Hull University Teaching Hospitals Epilepsy Transition Booklets—developed in collaboration with Epilepsy Action and NHS England.
Transitions can be tough. Whether it’s moving from paediatric to adult healthcare, starting college, or navigating new responsibilities, it’s a time full of change. These booklets are designed to make that journey easier—offering practical advice, relatable stories, and clear guidance for young people with epilepsy.
But what makes these booklets truly special? They were co-produced with young people.
Lived experience is the best tool for change. Young people see the world differently so by using our experiences and pairing them with expert knowledge, we can really help to incite changes for the better.Youth Voice Network Member
Co-Production in Action
The Youth Voice Network took part in dedicated co-production sessions to help redesign the booklets. Their lived experience shaped everything—from the tone of voice to the layout and accessibility. The result? A series of nine downloadable PDF booklets, each available in different readable formats to suit a range of needs.
It's nice to be able to use the experiences of myself and others within the NHS, both positive and negative, for good! I hope we can take away some of the anxiety for other young people.Youth Voice Network Member
Their feedback helped ensure the booklets are not only informative but also empowering. Topics include understanding your epilepsy, preparing for adult services, managing medication, and building confidence.
Why It Matters
This project is a brilliant example of how youth voice can drive real change. By working alongside NHS England and Epilepsy Action, the Youth Voice Network helped create resources that will be used across healthcare settings—making a lasting impact on how young people experience transition.
Download the NHS Hull Epilepsy Transition Booklets:
For Teenagers:
Easy Read Booklets:
- Getting ready to move to adult epilepsy clinics (1)
- Getting ready to move to adult epilepsy clinics (2)
- Getting ready to move to adult epilepsy clinics (3)
For parents of children with additional needs:
Get Involved
We’re so proud of the Youth Voice Network’s contribution—and we want more young people to get involved. If you’re aged 13–25 and want to make a difference, join the Youth Voice Network today.
Join the Youth Voice Network
Be part of something bigger. Help shape the future for young people with epilepsy.
It's important for young people to feel confident and empowered to take the lead in their own care. Epilepsy is already a condition that can feel out of your control sometimes so to be an active part of your care can feel like taking the control back.Youth Voice Network Member
