Guide to help treat people with epilepsy and learning disabilities

Published: November 27 2023
Last updated: November 27 2023

Grace Wood | The Clive Treacey Safety Checklist is for people with epilepsy and learning disabilities

Clive Treacey, from the The Clive Treacey Safety Checklist guidance documentGuidance to reduce risks to people with epilepsy and learning disabilities has been launched by NHS England and SUDEP Action.

The Clive Treacey Safety Checklist has been developed by NHS England Midlands, the University of Plymouth, NHS Cornwall Partnership and the charity SUDEP Action.

The checklist includes measures that help ensure people with epilepsy have up-to-date risk assessments, that their concerns are listened to and that staff who work with them are trained appropriately.

It is named after Clive Treacey who died from sudden unexpected death in epilepsy (SUDEP) aged 47 on 31 January 2017. He had learning disabilities and Lennox-Gastaut Syndrome.

Following his death, an independent review was launched into the care he received.

It found that his death was potentially avoidable and that there were multiple, system-wide failures in delivering his care and treatment.

Clive’s sister, Elaine Clarke, said: “I can only hope that the transparency, dedication ambition and bravery continues. A movement in health is rare but to see so many people determined to address the gaps is absolutely indescribable. I used to say Clive is famous for all the wrong reasons, but now he is famous for a million good reasons.”

Professor Mike Kerr from Cardiff University and Professor Rohit Shankar from the University of Plymouth were also involved in the project.