Epilepsy12 Youth Advocates

This is a group of epilepsy experienced or interested children, young people and families who volunteer together to improve care for epilepsy patients and their families. Read more about their award-winning project, the Clinic Chat Check List, and see how you can get involved!
Last modified
14 September 2021

Established in 2018, the Epilepsy12 Youth Advocates formed to support the Epilepsy12 national audit programme, bringing their voices, experiences, hopes and wishes to life through youth-led project work and advocacy.

RCPCH &Us The voice of children, young people and families

Our journey so far

The project started with a series of clinic chats in clinics across England, finding out what matters to children, young people and families to support their epilepsy care and experiences. You can read the results of the clinic chats in their report Epilepsy12 &Us and presented to the 2018 Epilepsy12 OPEN UK conference. In 2018 the group were the first ever winners of the HQIP Richard Driscoll Memorial Award for patient and public involvement.

The Epilepsy12 Youth Advocates identified through the clinic chats that children and young people wanted more support linked to their anxieties and worries about their epilepsy. Throughout 2019, the group developed a project to work with clinics, to find out how they support patients and families, to identify good practice and work with clinics to create actions for the future. The group presented their plans at the 2019 Epilepsy12 OPEN UK conference, with the 150+ attendees sharing their ideas to help develop the project.

...the Youth Advocates have visited six clinics virtually to support discussions around future plans whilst looking to find out what makes the “gold standard” in supporting patients’ worries and anxieties

The Youth Advocates then designed a clinic self-assessment tool called a "Clinic Chat Check List", for paediatric epilepsy services. The checklist helped them to think about their offer, to discuss as a team what they were doing well and to identify ideas for change. Eight clinics took part in the pilot programme, sharing their check lists with the Youth Advocates to review and to send their feedback in early 2020. The young volunteers then share their learning and experiences at the 2020 Epilepsy12 OPEN UK conference, highlighting the early impact that COVID-19 had on their project and their plans for the coming year. 

Towards the end of 2020 and into 2021, the Youth Advocates visited six of the clinics virtually to support discussions around future plans whilst looking to find out what makes the “gold standard” in supporting patients’ worries and anxieties.  The findings from their visits and what makes up a gold standard service can be found in the Epilepsy12 National Audit report 2021.  In 2020 the group were joint winners in the national HQIP Audit Heroes Awards in the National Volunteer of the Year category for their hard work with the Clinic Chat Check List project. 

In 2021, the group have continued to meet virtually, providing feedback to the clinics visited, writing their chapter for the national audit report and developing resources to support conversations in clinics about worries and anxieties. They have also supported campaigns on social media, shared their learning at RCPCH Conference Online in June 2021 and continue to volunteer to support improvements in epilepsy care. They were also chosen as joint winners in the 2021 RCPH &Us Volunteer Awards for all their commitment to improving health service through volunteering.

The journey continues

The Epilepsy12 Youth Advocates would like all clinics to have the chance to take part in the support with worries and anxieties project, and to undertake the self assessment. Clinics can download the self assessment form and how-to guide below.

Keep checking this page for the latest updates on the project and email and_us@rcpch.ac.uk if you have any questions or would like to get involved.