SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Project to improve epilepsy care in specialist settings


The 2020 Learning Disabilities Mortality Review (LeDeR) into deaths in people with a learning disability (LD) showed that epilepsy was the second most frequently reported potentially treatable cause of death in 2018-2019. More recently, a report in the Midlands into the death of Clive Treacey (pictured, who lived with epilepsy and LD) highlighted systemic and structural issues that led to support failures in relation to his care.

One key area identified in the Treacey report was the need for better support when moving from setting to setting; whether from home to community base, from one community setting to another or from a community base to an in-patient hospital setting. Fundamentally, there was an evidenced shortage of practical guidance for decision-makers to ensure that safe and effective epilepsy care was integrated and maintained within these transitions.

SUDEP Action is currently leading a project to address this. The ‘My Life with Epilepsy – tribute to the learnings from the life of Clive Treacey’ project will develop good practice guidance to equip commissioners and providers to improve the quality of epilepsy care in specialist hospital and community care settings.

With a steering group representing a wealth of knowledge and experience, including Clive’s sister Elaine and leading experts in epilepsy and learning disability, including Prof. Mike Kerr (Psychological Medicine and Clinical Neurosciences, Cardiff University) and Prof. Rohit Shankar (Cornwall Partnership NHS Foundation Trust & University of Plymouth Peninsula School of Medicine), we are keen to involve commissioners and providers to assist us in developing a resource that is both comprehensive and easily assimilated into existing work practice.

If you are interested in contributing your knowledge and experience, please contact Ben Donovan at [email protected]

Read more