About
The 8th Annual Epilepsy12 & OPEN UK National Conference was held on Monday 22 September 2025 at the RCPCH building in London, welcoming 420 virtual participants alongside 35 attendees in London, as the conference returned in hybrid form for the third year.
Co-Chaired by Ailsa McLellan, Dr Richard Brown and Dr Colin Dunkley, the conference aimed to amplify the voice of children and young people with epilepsies and to bring professionals together to drive quality improvements in epilepsy care across England and Wales.
Key discussions focused on the importance of the Youth Advocates, the ongoing challenges in access to Epilepsy surgery and specialist services, and the expanding role of epilepsy specialist nurses in supporting children and families. Delegates also heard updates on Epilepsy12, medical adherence in paediatric epilepsy, and OPEN UK, prompting valuable debate and collaboration.
The event reinforced the importance of partnership between young people, families, and professionals in shaping and delivering better care and outcomes for those living with epilepsy.
Programme
- Epilepsy12 Youth Advocates
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The Epilepsy12 Youth Advocates highlighted the value of engaging children, young people, and families in shaping epilepsy services. During the conference, they used Menti to gather feedback and shared ideas on how to strengthen young people’s involvement in their own care and in improving services.
- Paediatric Epilepsy Surgery Pathways
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Professor Helen Cross presented on paediatric epilepsy surgery pathways, outlining the aims of surgery, the role of multidisciplinary assessment, and the work of the Children’s Epilepsy Surgery Service (CESS). She highlighted referral trends, challenges, and the importance of early referral in improving outcomes.
- The evolving role of Epilepsy Specialist Nurses
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Nicola Heenan and Carys Amies spoke about the evolving role of epilepsy specialist nurses, reflecting on how the role has expanded over the past 20 years. They discussed changing responsibilities, nurse-led clinics, and the growing impact of specialist nursing on patient care and services.
- Epilepsy12 update
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Colin Dunkley and Niky Raja gave an update on Epilepsy12, reviewing the latest audit results and reflecting on progress over 15 years. They outlined improvements achieved, areas still facing challenges, and future plans for data use, digital platforms, and service development.
- Medical Adherence in Paediatric Epilepsy (MAPE)
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Sophie Knight and Lisa Whiting presented on the MAPE study, which explored medicine adherence in paediatric epilepsy. They shared insights from families, identified barriers and facilitators, and pointed to ways in which support for adherence could be strengthened.
The recordings will be available on YouTube shortly. In the meantime, you can rewatch all sessions directly through the event platform.
Youth Legacy Award
At this year’s conference, the Youth Legacy Award 2025 was presented to Young Epilepsy and its Youth Voice Network. The award recognises individuals and organisations that amplify children and young people’s voices in epilepsy care, celebrating advocacy, youth-led initiatives, and the value of learning from lived experience. The award was collected on behalf of Young Epilepsy by Catherine Hodder, Head of Voice, Policy and Influencing, and Health Activity Lead.
The winning project was recognised for its pioneering work in co-developing a tailored Acceptance and Commitment Therapy (ACT) intervention for young people with epilepsy, in partnership with the South Paediatric Neurosciences Operational Delivery Network. Young people aged 13–25 led every stage of the project, from design through to evaluation, ensuring the therapy reflects their real needs and experiences.
Their achievement stood out among an inspiring field of nominees, which included mental health and wellbeing workshops, youth voice networks, and young fundraisers supporting epilepsy care. Congratulations to Young Epilepsy and the Youth Voice Network for their outstanding contribution to shaping the future of epilepsy services.
CPD certificates
This conference has been approved by the RCPCH for CPD in line with the current RCPCH CPD Guidelines.
To receive your certificate, please log in to the event platform where you viewed the conference and complete the event feedback form. Once submitted, your certificate will be sent to you automatically.
Contact
The Epilepsy12 project team members are available to respond to any related queries at epilepsy12@rcpch.ac.uk or on Tel: 020 7092 6157.