You can find conference presentations, resources and more information about the event on this page.
2025 Conference
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.
Conference recordings are now accessible on YouTube.
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.
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.
Previous Conferences
Access presentation recordings from previous conferences below.
- 2024 Conference
2024 Conference recordings will be availble soon.
- 2023 Conference
2023 Conference recordings can be viewed here.
- 2022 Conference
2022 Conference recordings can be viewed here.
- 2021 Conference
Technology innovation in epilepsy care - Professor Sameer Zuberi, Consultant Paediatric Neurologist, Royal Hospital for Children, Glasgow
Mental health research - MICE study update & PAVES data - Sophie Bennett, Clinical Psychologist, GOSH and Dr Ailsa McLellan
Patient engagement led by children and young people - Emma Sparrow, RCPCH CYP Engagement Team Manager, jointly with Epilepsy Youth Advocates
- 2020 Conference
Chair's welcome and British Paediatric Neurology Association (BPNA) update on activities - Professor Finbar O'Callaghan, Professor of Paediatric Neuroscience at UCL, (Hon) Consultant Paediatric Neurologist, and BPNA President
Children and young people led symposium - Epilepsy12 Youth Advocates with Emma Sparrow and Emma Hosking, RCPCH Children and Young People's Engagement team
OPEN UK update: NHS long-term plan - Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Trust, Chair of OPEN UK
Epilepsy12 results of the combined national audit 2020 - Dr Colin Dunkley, Epilepsy12 Clinical Lead, Consultant Paediatrician, Sherwood Forest NHS Trust
RCPCH Epilepsy Quality Improvement Programme (EQIP) presentation showcase - Dr Patricia O’Connor, Honorary Professor, University of Stirling in the Faculty of Healthcare Sciences and Sport, and Executive Director, QI Discovery
Establishing a Transition Service - Ms Louise Capeling, Children's Epilepsy Nurse Specialist, Aneurin Bevan University Health Board EQIP team
Quality and timely EEG recordings at Nottingham University Hospitals NHS Trust - Ms Helen Sneath, Trainee Consultant Scientist, Nottingham University Hospitals NHS Trust EQIP team
Improving the Paediatric Epilepsy Pathway - One Seizure at a Time - Dr Eve Bassett, Consultant Paediatrician with interest in Epilepsy & Neurology, Royal United Hospitals Bath NHS Foundation Trust EQIP team
Improving epilepsy information on electronic records including emergency health care plans becoming more easily accessible via an electronic record - Ms Ailsa Grassam, Epilepsy Specialist Nurse, York Teaching Hospitals NHS Foundation Trust EQIP team
RCPCH Epilepsy Quality Improvement Programme (EQIP) - How do we embed change - Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Trust, Chair of OPEN UK
Chair's closing remarks - Professor Finbar O'Callaghan, Professor of Paediatric Neuroscience at UCL, (Hon) Consultant Paediatric Neurologist, and BPNA President
- 2019 Conference
Children and Young People led Symposium - Emma Sparrow, RCPCH CYP Engagement Team Manager, jointly with Epilepsy Youth Advocates
OPEN UK update: NHS Long Term Plan and launch of pilot QI programme RCPCH EQIP - Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Trust, Chair of OPEN UK
Epilepsy12 update - Dr Colin Dunkley, Epilepsy12 Clinical Lead, Consultant Paediatrician, Sherwood Forest NHS Trust
Keynote presentation: The elephant of medication adherence - Professor Martin Kirkpatrick, Consultant Paediatric Neurologist and Clinic Lead, North of Scotland Child Neurology Network
Introduction of home telemetry as an alternative to inpatient telemetry - Dr Sutapa Biswas, Consultant Neurophysiologist, Chelsea and Westminster Hospital NHS Foundation Trust
Audit of PREVENT compliance in sodium valproate prescribing for female patients - Dr Amy Barker, ST5 Paediatric Trainee, Peterborough City Hospital
Exploring the economic value of the Roald Dahl Sapphire Epilepsy Nurse Specialist at Sherwood Forest Hospitals NHS Trust - Ms Kirsten Johnson, Epilepsy Specialist Nurse, Sherwood Forest Hospitals NHS Trust
- 2018 Conference
Epilepsy &Us, Giving a voice to children, young people and families as part of a national audit programme - Owen Thurston, National Paediatric Epilepsy Programme Board Member, RCPCH and Epilepsy12 Youth Advocate, Rachael Lewis, National Paediatric Epilepsy Programme Board Member, RCPCH and Epilepsy12 Youth Advocate and Emma Sparrow, Children and Young People's Engagement Manager, RCPCH
Improving epilepsy information for children through user involvement - George Matson-Phippard, Electronic Learning Officer, Epilepsy Action
Mental health problems in children and young people with epilepsy; early identification and management of the unmet need with limited CAMHS resources - Dr Ailsa McLellan, Consultant Paediatric Neurologist, NHS Lothian and Chair of BPNA British Paediatric Epilepsy Group, and Dr Kirsten Verity, Neuropsychologist, NHS Lothian
A UK survey of the experience of service provision for children and young people with epilepsy - Dr Martin Kirkpatrick, Consultant Paediatric Neurologist & Honorary Reader, NHS Tayside
Working together to improve access to children’s epilepsy surgery services: results from the OPEN UK national survey - Dr Jonathan Holland, Paediatric Registrar, West Suffolk Hospital
The role of virtual face-to-face clinics within paediatric epilepsy services; a pioneering service development from Luton Community Children’s Services - Liz Stevens, Children’s Epilepsy Specialist Nurse, Luton Children’s and Adult Community Health Services
Epilepsy12 update - Dr Colin Dunkley, Epilepsy12 Clinical Lead and Consultant Paediatrician, Sherwood Forest Hospitals NHS Foundation Trust
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.