A major new study has found that people living with both epilepsy and intellectual disabilities are dying much too young, often due to missed chances for prevention and ongoing health inequalities.
Experts say that many of these deaths could have been avoided with better care and support.
In England, about 1.2 million people have some form of intellectual disability, and around 20–25% of them—up to 300,000 people—also have epilepsy. This is far higher than in the general population, where only 1% have epilepsy.
Until now, there hasn’t been any national research looking specifically at what causes epilepsy-related deaths in people with intellectual disabilities, or what could help prevent them.
This new study fills that gap. It looked at almost 10,000 deaths between 2016 and 2021, making it the largest study in the world to explore this issue.
The results were troubling. The researchers found that epilepsy was the main cause of death in over 16% of these people.
Those who died from epilepsy were also younger, with an average age of 56, compared to 62 for those whose main cause of death was something else. Even more concerning, people from African and Asian backgrounds died at an average age of just 36.
The study found that even though there are programs and support services—like yearly health checks, access to specialist doctors, and therapy for speech and mental health—these are not provided equally or consistently. When used properly, these supports can help people live longer.
Writing in the Journal of Neurology, Neurosurgery, and Psychiatry, the authors said that the current lack of good care and the failure to give regular health checks is unacceptable. They are calling for a major change in how services are planned and delivered to prevent more avoidable deaths.
The research was led by teams from the University of Plymouth, the University of Exeter, and Cornwall Partnership NHS Foundation Trust, with help from other universities across the UK.
Professor Rohit Shankar from the University of Plymouth explained that epilepsy is one of the deadliest brain conditions, second only to stroke.
He said people with intellectual disabilities are especially vulnerable and often cannot speak up for themselves. Yet the tools to help them exist—they just aren’t being used properly across the country.
Professor William Henley from the University of Exeter added that the findings should be a wake-up call to improve care and give families hope for a better future.
The study used data from the LeDeR program, which reviews the lives and deaths of people with learning disabilities to help improve services. Professor Pauline Heslop from the University of Bristol, who helped lead LeDeR, said she was glad the data was being used to highlight these serious problems.
The study also highlights tools like the Clive Treacey Safety Checklist and the SUDEP and Seizure Safety Checklist. These were developed to help manage risks for people with epilepsy and intellectual disabilities. Clive Treacey died at age 47 while in a psychiatric unit, and the checklist was named in his memory.
His sister, Elaine Clarke, said that it’s heartbreaking that people like her brother are still dying needlessly because they don’t get the care they need. She said there would be outrage if these statistics applied to other groups of people, but people with intellectual disabilities are often ignored.
Charities welcomed the study and agreed that NHS care for people with epilepsy and intellectual disabilities needs a complete overhaul. Jane Hanna from SUDEP Action said that some NHS areas are using the free safety checklists, but others are not, and that needs to change.
Alison Fuller from Epilepsy Action added that the study proves the deep inequalities in care and the urgent need for action, especially for people from African and Asian backgrounds.
Kate Chate from Learning Disability England said that knowing why people are dying is the first step to preventing it. She praised the study for showing the value of psychiatrists and speech therapists in care plans and for using real data to call for better services.
In summary, this study shows that people with epilepsy and intellectual disabilities are dying too young, often because of preventable problems. With proper care, regular health checks, and equal access to services, many of these lives could be saved.
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