About
OPEN UK aims to unite children's regional and national epilepsy networks to improve integrated care for children and young people with epilepsies, and has representation from all regional epilepsy networks.
It also aims to:
- encourage collaboration and sharing of regional and national ideas, pilots, and resources
- be a national resource and professional UK body to which other organisations may come for information, support, data and strategic or clinical input
- facilitate links to local, regional and national funding bodies.
The current chair of the OPEN UK Working Group is Dr Richard Brown.
You can download the terms of reference below.
Membership of OPEN UK
| Network (acronym) | Network (full name) | Network Lead(s) | EQIP Advisory Group (see below information about EQIP) |
|---|---|---|---|
| BPEG | British Paediatric Epilepsy Group | Suresh Pujar Sara Aylett | - |
| BRPNF | Birmingham Regional Paediatric Neurology Forum | Ramiah Ramalakshmi | Vacant post |
| CEWT | Children's Epilepsy Workstream in Trent | Maria Moran | Rachael Wheway |
| EPEN | Eastern Paediatric Epilepsy Network | Arun Saraswatula | Carolyn McAskill, Jill Conium |
| EPIC | Mersey and North Wales Network 'Epilepsy in Childhood' Interest Group | Neisha Dunbar-Creasey Jim Pauling | Laura Neely |
| NI | Northern Ireland | Lesley-Ann Funston Clare Loughran | - |
| NTPEN | North Thames Paediatric Epilepsy Network | Amit Bali | Emma Hassan |
| NWEIG | North West Children and Young People's Epilepsy Interest Group | Sri Nagesh Panasa | Amanda Hirst |
| ORENG | Oxford Region Epilepsy Interest Group | Bolutito Akinbiyi | Alison Mollett |
| PENNEC | Paediatric Epilepsy Network for the North East and Cumbria | Anita Devlin Ramesh Kumar | Ian Webster |
| SETPEG | South East Thames Paediatric Epilepsy Group | Dionysios Grigoratos | Amanda Tomalin |
| SPEN | Scottish Paediatric Epilepsy Network | Andreas Brunklaus | - |
| SWEP | South Wales Epilepsy Forum | Silvia Sanchez Marco Victoria Currigan | Vacant post |
| SWIPE | South West Interest Group Paediatric Epilepsy | Andrew Lux | Debbie Dean |
| SWTPEG | South West Thames Paediatric Epilepsy Group | Samantha Chan | Vacant post |
| TEN | Trent Epilepsy Network | Suhail Habib | Vacant post |
| WPNN | Wessex Paediatric Neurosciences Network | Andrea Whitney | Sharon Seton |
| YPEN | Yorkshire Paediatric Epilepsy Network | Sandhya Jose Christine Bennett | Vacant post |
Epilepsy12 audit and QI
The RCPCH Epilepsy12 audit aims to help services measure and improve the quality of care for children and young people with seizures and epilepsies.
The RCPCH Epilepsy Quality Improvement Programme (EQIP) supports paediatric epilepsy service teams to identify sustainable improvements in their services.
SETPEG Secondary Epilepsy Service Operational Framework
The SETPEG Secondary Epilepsy Service Operational Framework (2025) is a reference document designed to reduce variability and improve the quality of care for children with epilepsy across the UK while also aiming to support the sustainability of regional secondary epilepsy services. The Framework was developed by a dedicated working group from the South East Thames Paediatric Epilepsy Group (SETPEG) and combines national guidelines from NICE, NHS England and the RCPCH Epilepsy12 Audit. It serves as an easy-reference document that defines both the clinical standards to be achieved and the minimum resource requirements—including staffing ratios, clinic structures, and investigation timelines—necessary for a secondary paediatric epilepsy service to function effectively. The framework can be found here.