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 years – 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 years – 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 conducted by experts in epilepsy, intellectual disability and medical statistics from the Universities of Leicester, Plymouth and Exeter, Cornwall Partnership NHS Foundation Trust, and others working 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.”

Dr Samuel Tromans, Associate Professor at the University of Leicester’s Division of Public Health and Epidemiology who helped write the article and interpret the data, added: “These findings are deeply concerning. Working in an ethnically diverse region such as Leicester makes one acutely aware of the essential importance of providing equitable care to all, and that the needs of people from minority ethnic groups should be at the heart of any strategies to urgently address this mortality gap.”

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.

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 Nottinghamshire-based 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.

Alison Fuller from Epilepsy Action said the research lay bare "shocking inequalities”.

She added: “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."