Project aims to reduce the epilepsy risks for patients with intellectual disabilities

The Clive Treacey Safety Checklist and accompanying guidance provide practical advice for commissioning professionals
Brain neurons
Researchers from the University of Plymouth have led the development of new guidance designed to reduce the epilepsy risks for people with intellectual disabilities.
Together, the Clive Treacey Safety Checklist and accompanying guidance provide a wealth of practical advice for professionals commissioning and providing community and residential care.
Launched by NHS England and the charity SUDEP Action, they have been designed to deliver safer and more effective epilepsy care for people with a learning disability and/or autism.
The project has been led by Professor Rohit Shankar MBE, Professor in Neuropsychiatry at the University of Plymouth and Director of CIDER – Cornwall Intellectual Disability Equitable Research.
He says it fills a gap in knowledge and can assist, as part of a systemic strategy and action plan, in delivering improvements for people with epilepsy and learning disability and/or autism.
This is the latest guidance created by CIDER, a partnership between the University and Cornwall Partnership NHS Foundation Trust (CFT) that aims to enhance the care of people with intellectual disability through research and service development.
It has previously created a series of toolkits – including a SUDEP checklist – that have been adopted nationally and internationally, while also promoting the use of emerging technologies to benefit patients and their families.

Intellectual disabilities and epilepsy are very complex conditions in their own rights. But very often, people with one have also been diagnosed with the other, and that presents a number of significant challenges for medical professionals. We urgently need to reach a point where we have first-class care for people with intellectual disability and epilepsy, and their families. To achieve that, it is imperative that we have the support in place for health professionals that can inform their decisions.

Rohit ShankarRohit Shankar
Professor of Neuropsychiatry

The new guidance has been named in memory of Clive Treacey, who had a learning disability and epilepsy and died suddenly following a seizure and cardiac arrest.
A review into his death subsequently highlighted a series of failures in delivering his care and treatment, with one key area of concern shortfalls being the decision-making around how he was moved between healthcare settings.
Writing in the guidance, the authors say commissioners have a significant responsibility in finding and accessing appropriate placements for people like Clive. As such, it is important to ensure they are equipped with the knowledge about epilepsy to make decisions based on each individual.

Epilepsy is one of the most common and preventable causes of death for people with learning disabilities. The condition affects about 22% of people with learning disabilities – compared to just under 1% 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.

Robert Ferris
NHS England’s Programme Director for Learning Disabilities, Autism and SEND in the Midlands

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.

Ben Donovan
SUDEP Action’s project lead
 

Cornwall Intellectual Disability Equitable Research – CIDER

Formally launched in October 2018 and led by Professor Rohit Shankar, Cornwall Intellectual Disability Equitable Research (CIDER) is a partnership between the University of Plymouth and Cornwall Partnership NHS Foundation Trust (CFT) focusing on epilepsy in people with intellectual disabilities.
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Plymouth Institute of Health and Care Research (PIHR)