Paediatric SUDEP and Seizure Safety Checklist

SUDEP Action & Young Epilepsy team up to create an epilepsy risk Checklist for children

SUDEP Action and Cornwall Partnership NHS Foundation Trust are collaborating with Young Epilepsy to create a paediatric version of the SUDEP and Seizure Safety Checklist. The award-winning Checklist, which launched in 2015, supports health professionals in discussing epilepsy mortality risks and SUDEP (Sudden Unexpected Death in Epilepsy) with their patients (aged 16+).

It is currently used by over 1,500 health professionals across the UK, and has been recognised by NHS Rightcare, the Learning Disabilities Mortality Review (LeDeR) and Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries (MBRRACE) as having the potential to prevent deaths and help people with epilepsy to live more safely. Research has shown that using the Checklist to discuss risks linked to epilepsy deaths & SUDEP, helps people with epilepsy at risk to reduce them and live more safely.

There are over 21 epilepsy related deaths each week in the UK – often in people who are young and otherwise healthy. As many as 80% of young epilepsy deaths could be prevented with better information and access to services. Research also now suggests that the rate of SUDEP in children is similar to in adults (1.2 deaths in every 1000 children with epilepsy each year). This new Checklist project will help tackle this issue.

The project team will get feedback from health professionals, young people with epilepsy and parents of children with epilepsy, to create a Checklist and other resources to support these important conversations. By having these discussions in a structured way - that is personal to each patient and based on the latest evidence into SUDEP and epilepsy mortality risks - the project aims to increase understanding of the risks linked to living with epilepsy.

Opportunities to get involved in the project will be shared via SUDEP Action and Young Epilepsy, and you can register your interest here.

Working alongside the project team are researchers from five organisations. A group of leading experts are also supporting the project.

Find out more about why they’re involved in this project via this video.