Epilepsy can lead to earlier deaths in people with intellectual disabilities

A combination of missed prevention opportunities and health inequalities can result in the early deaths of people living with epilepsy and intellectual disabilities, a study has shown.

Around 1.2million people in England have some form of intellectual disability, with epilepsy estimated to impact 20-25% of them – up to 300,000 people – compared to just 1% of the general population.

However, until now there has been no national-level population-based evidence on the risks and protective factors specifically contributing to epilepsy-related deaths in people with intellectual disability.

This new research aims to fill that gap, with its analysis of nearly 10,000 deaths between 2016 and 2021 constituting the largest global study examining epilepsy-related mortality in adults with intellectual disabilities and epilepsy.

It found epilepsy was the primary cause of death in just over 16% of those people, and that they died at a significantly younger average age – 56 compared to 62 – than those who had issues other than epilepsy listed as the primary cause of death in their health records.

The study particularly highlights significant disparities in epilepsy-related mortality based on ethnicity, with African and Asian individuals dying younger – at an average age of just 36 – than their White British counterparts.

All of this, the authors say, is despite the fact targeted interventions – including annual health checks, multidisciplinary care access, and specialist psychiatric and speech and language therapy support – do exist but are rarely administered in a uniform manner. The paper showcases these interventions as being effective at increasing a person’s length of life.

Writing in the Journal of Neurology, Neurosurgery, and Psychiatry, the study’s authors say poor quality of care, service gaps and the lack of annual health checks should be considered unacceptable in modern healthcare.

As such, they have called for a systemic service redesign to try and prevent avoidable epilepsy-related deaths among people with intellectual disabilities in the future.

The study was led by experts in epilepsy, intellectual disability and medical statistics from the University of Plymouth, the University of Exeter and Cornwall Partnership NHS Foundation Trust, working with colleagues in universities across the UK.

Professor Rohit Shankar MBE, Professor of Neuropsychiatry at the University of Plymouth and Director of its Cornwall Intellectual Disability Equitable Research (CIDER) unit, said: “Among neurological conditions, epilepsy is the biggest killer apart from stroke. Our study shows that among people who also have an intellectual disability, it poses a greater threat of them dying younger with those from ethnic minorities living in the UK being even more at risk. What is arguably even more shocking is that there are strategies including psychiatric support to speech and language therapy out there to help people. It is wholly unacceptable that these are not routinely and systematically used in a proactive manner everywhere in England, particularly when we’re talking about people who are extremely vulnerable and often have difficulties in communicating their needs or concerns. It is a situation that urgently needs addressing.”

Professor William Henley, Professor of Medical Statistics at the University of Exeter Medical School, said: “We hope our stark and shocking findings will act as a rallying cry to make a difference for families affected by epilepsy and learning disability. Our research paints a bleak picture – we owe it to these families to build on this to make a difference, to offer a brighter future.”

The research was based on data collected through the Learning from Lives and Deaths Review Programme (LeDeR), which focuses on learning from the lives and deaths of people with learning disabilities and autistic people, using reviews to improve local services.

Pauline Heslop, Emeritus Professor of Intellectual Disabilities Studies at the University of Bristol, was the Programme Manager for the LeDeR Programme for England from 2015-2021. She added: “I am pleased that the LeDeR data is still being used effectively to highlight areas of disparity in deaths of people with intellectual disability, and to indicate where policy and practice needs to be strengthened. It is of significant concern that epilepsy-related deaths are associated with a poorer quality of care and gaps in service provision when compared to non-epilepsy related deaths – issues which need addressing at individual and systemic levels.”

The study’s authors have been working for several years with charities and other healthcare organisations who support people affected by epilepsy and learning disabilities.

This has resulted in the development of dedicated programmes such as the Clive Treacey Safety Checklist (co-developed by the charity SUDEP Action, NHS England Midlands, the University of Plymouth, Cornwall Partnership NHS Foundation Trust) and the SUDEP and Seizure Safety checklist, which is highlighted in the study as a resource that should be used more widely in the future.

The Clive Treacey checklist was named in honour of a man who died aged 47 having been kept in a psychiatric unit without having his health needs fully addressed. and the Step Together toolkit

Clive’s sister, Elaine Clarke, said of the new findings: “It’s deeply shocking to see that there are so many people with a learning disability who, just like my brother Clive, continue to die avoidable deaths because they do not receive the epilepsy care and treatment that they should. If these terrible statistics belonged to almost any other part of society there would be public outrage – but the harsh reality is that people like my brother Clive, are not valued or prioritised.”

The findings have also been welcomed by UK-based charities, who said the research reinforces their ongoing calls for a complete overhaul of NHS care for people with epilepsy and intellectual disabilities.

Jane Hanna OBE, Co-Founder and Director of Policy and Influencing of SUDEP Action, said: “The stark findings of this large study are welcomed as they reflect the experience of families of the significant gaps in basic care and communication over three decades since SUDEP Action was founded. Today there is a stark lottery between the local NHS areas that are working with the charity to adopt the free SUDEP and Seizure Safety Checklist and areas that are still operating in ignorance that epilepsy is a cliff-edge condition that requires advocacy and risk management.“

Alison Fuller from Epilepsy Action said: “This research lays bare the shocking inequalities faced by people with epilepsy and a learning disability. It clearly shows that they are dying far too young and acts as a stark reminder that this group remains among the most at-risk group in our health system. Even more concerning is the finding that people from African and Asian backgrounds face an even greater risk of dying prematurely, exposing deep-rooted and persistent inequalities. These are preventable deaths! With annual health checks, access to the right professionals and truly joined up person centred care plans, lives can be saved, but too often support is either inconsistent or unavailable. The evidence is clear the NHS must act urgently to deliver proactive, coordinated, equitable care, so that everyone with epilepsy and a learning disability has the chance to live a longer, healthier life.”

Kate Chate, Family Member Election Representative Co Chair for Learning Disability England, said: “It is so encouraging to see research being done into the causes of early and preventable deaths of people with learning disabilities. Knowing ‘why’ is surely the start of the road to prevention? This paper shows the very stark and alarming difference for people with Black, Afro Caribbean and Asian origins. And it reveals that input from psychiatrists and speech & language therapists is particularly important. As a family member this kind of research that brings data to advocate for better services for people with Learning Disabilities is more than just welcome, it is very gratefully applauded.”