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NHS England-funded project is lasting legacy to Clive


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

Together, the Safer Services Guide and accompanying Clive Treacey Safety Checklist 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. 

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 (pictured below) 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 and/or autism. We want this guidance to be part of Clive’s legacy, to ensure what happened to him does not happen to anyone else.”

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 (LeDeR) Programme learning 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.”    

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).


PDF icon The Clive Treacey Safety Checklist - commissioning guidance

PDF icon The Clive Treacey Safety Checklist

PDF icon The Clive Treacey Safety Checklist - project report