Guidance designed to reduce the epilepsy risks faced by people with learning disabilities has been launched by NHS England and SUDEP Action.

Together, the ‘Clive Treacey Safety Checklist’ and accompanying guidance provide a wealth of practical advice for professionals commissioning and providing community and residential care.

The guidance is dedicated to the memory of Staffordshire man Clive Treacey who died in 2017, aged 47, and whose care and treatment was the subject of an independent review commissioned by NHS England.

Robert Ferris,  NHS England’s Programme Director for Learning Disabilities, Autism and SEND in the Midlands, said: “Epilepsy is one of the most common and preventable causes of death for people with learning disabilities. The condition affects about 22 per cent people with learning disabilities – compared to just under one per cent of the general population.

“This new guidance is a direct response to the learning from the review we commissioned into Clive’s care and the Learning Disability Mortality Review Programme in the Midlands – both of which made the case for urgent change. We’re now encouraging commissioners and providers to improve life for people with learning disabilities by adopting the guidance.”

Clive Treacey’s sister, Elaine Clarke, supported the project as a lived-experience expert. Talking about her involvement in the project, she 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.”

SUDEP Action’s project lead, Ben Donovan, said: “The Independent Review into the death of Clive Treacey highlighted various shortcomings that contributed to unsafe epilepsy care over the course of Clive’s life. This commissioning checklist and guidance will provide a concise but comprehensive tool to help deliver safe, effective epilepsy care for people with a learning disability, autism or both conditions. We want this guidance to be part of Clive’s legacy, to ensure what happened to him does not happen to anyone else.”

Other contributors to the project include Professor Mike Kerr (Psychological Medicine and Clinical Neurosciences at Cardiff University) and Professor Rohit Shankar (Cornwall Partnership NHS Foundation Trust and University of Plymouth Peninsula School of Medicine).

SUDEP Action is a charity dedicated to tackling early deaths caused by epilepsy. SUDEP stands for Sudden Unexpected Death in Epilepsy. More information here.