Epilepsy is one of the most common long-term conditions affecting approximately 112,000 children and young people (CYP) under 18 years of age in the UK. When someone with epilepsy dies suddenly and unexpectedly, without any alternative cause identified, it is called Sudden Unexpected Death in Epilepsy (SUDEP).
This briefing describes the characteristics of the children who died of SUDEP between April 2019 and March 2024, and explores learning from the national themes identified from the child death reviews.
The suggested actions in the report call on Integrated Care Boards (ICBs), Trusts and neighbourhood services to:
- Fully implement the National Institute for Health and Care Excellence (NICE) recommendations and Epilepsy12 metrics
- Review the design, capacity, timeliness and effectiveness of early pathways towards specialist epilepsy services
- Implement robust Was Not Brought (WNB) policies across the NHS, as detailed in the NICE Transition Guideline
- Ensure robust systems are developed for identifying and communicating issues with prescriptions and dispensing, between pharmacies, primary, secondary and tertiary care
- Avoid missed opportunities for monitoring outcomes after medication changes
- Institute mandatory, high-quality paediatric epilepsy training for all professionals
- Ensure that there is ongoing development of professional training and educational programmes so that professionals continue to develop and improve their management of epilepsy