#OnTopofEpilepsy campaign

Amplifying the voices of young people living with epilepsy

Celebrating the success 

In May 2021 we launched the #OnTopOfEpilepsy campaign to raise awareness of the links between epilepsy and mental health and call for mental health support to be integrated into children’s epilepsy care.

Today, we are thrilled to share the amazing achievements of the Youth Voice Network and their active involvement in the NHS Transformation programme through our #OnTopofEpilepsy campaign. The Transformation programme works to improve care and outcomes for children and young people with epilepsy. Members of the Youth Voice Network have made a significant impact on epilepsy care, highlighting the importance of including the perspectives of young people with lived experience.

1. Collaborating at paediatric epilepsy oversight group meetings:

We are proud to say that three Youth Voice Network members have been representing us at Oversight group meetings, meaning their unique insights and experiences have been right there in the decision-making process.

2. Active participation in working groups:

Their involvement goes beyond attending meetings. They have actively engaged in working group meetings where they have had the opportunity to contribute to more specific aspects of the Transformation program. Sharing their personal experiences, expressing their opinions, and providing recommendations for improvement, their voices have played a crucial role in shaping the future of paediatric epilepsy care.

3. Impactful engagement with NHS regional clinical leads:

Directly influencing the implementation of changes in paediatric epilepsy care across different regions in England! Collaborating with clinical leads at the regional level means their perspectives have been integrated into healthcare strategies. Their insights have helped to ensure that the changes made reflect the needs of young people.

4. Shaping the Bundle of Care draft:

Reviewing the Bundle of Care draft and providing direct feedback in a youth session. Meaning youth voice on the document that outlines recommendations and standards for epilepsy care is heard loud and clear.

The Youth Voice Network ensures that lived experiences and perspectives of young adults living with epilepsy are not only acknowledged but also placed at the forefront of efforts to enhance epilepsy care within the NHS Transformation Program.

It’s been amazing to be part of the NHS working groups where I've got to meeting people I could never have imagined and have my voice heard by them. It’s good to know young people are being considered by people with so much power, and they're speaking for us and future generations of young people. It's so easy to forget that what these youth groups say and decide will determine the futures of children that haven't even been born yet, so to speak for them is truly an honour.
- Annie (Member of the Youth Voice Network) on her involvement in the Transformation Programme

Our campaigns are led by Youth Voice

Together, let's continue to create positive change! Join the Youth Voice Network today to support and drive our new campaign #UnderstandMyEpilepsy.

Our campaigns are led by Youth Voice

Understand My Epilepsy

#UnderstandMyEpilepsy campaign is led by young people with epilepsy. We work with them; listen to them, and with them we will amplify their stories. Working together we will take their voices to the decision-makers, and make them sit-up and listen.

Our campaigns are led by Youth Voice

Youth Voice

Listening to and understanding the lived experiences of children and young people with epilepsy.