A groundbreaking study led by experts from the University of Plymouth, the University of Exeter, and Cornwall Partnership NHS Foundation Trust has revealed alarming findings about epilepsy-related mortality among individuals with intellectual disabilities in England. The research, which analyzed nearly 10,000 deaths between 2016 and 2021, highlights significant disparities in mortality rates, particularly among ethnic minorities.
According to the study, epilepsy was identified as the primary cause of death in over 16% of the cases examined, with individuals dying at an average age of 56—six years younger than those whose deaths were attributed to other causes. The research also found that African and Asian individuals with intellectual disabilities and epilepsy were dying at an even younger average age of 36 compared to their White British counterparts.
Understanding the Scope of the Problem
In England, approximately 1.2 million people live with some form of intellectual disability, and epilepsy affects an estimated 20-25% of this population—up to 300,000 individuals. This is significantly higher than the 1% prevalence rate in the general population. Despite the availability of targeted interventions, such as annual health checks and specialist care, these are not consistently applied, leading to preventable deaths.
The study’s authors emphasize the need for systemic changes in healthcare services to address these disparities. Rohit Shankar MBE, Professor of Neuropsychiatry at the University of Plymouth, stated,
“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.”
Calls for Systemic Change
The research underscores the urgent need for a redesign of healthcare services to prevent avoidable epilepsy-related deaths. The authors call for the implementation of effective strategies, such as the Clive Treacey Safety Checklist and the SUDEP and Seizure Safety checklist, which have been shown to improve outcomes when used consistently.
William Henley, Professor of Medical Statistics at the University of Exeter Medical School, hopes the findings will serve as a catalyst for change, stating,
“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.”
Community and Charity Reactions
The study’s findings have been met with concern and calls for action from UK-based charities and advocacy groups. Jane Hanna OBE, Co-Founder and Director of Policy and Influencing of SUDEP Action, remarked,
“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.”
Alison Fuller from Epilepsy Action highlighted the inequalities faced by people with epilepsy and a learning disability, noting,
“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.”
Implications for the Future
The study not only sheds light on the current state of healthcare for individuals with intellectual disabilities and epilepsy but also serves as a call to action for policymakers and healthcare providers. The researchers and advocacy groups are urging for a more proactive and coordinated approach to care, emphasizing the importance of annual health checks and access to multidisciplinary support.
Kate Chate, Family Member Election Representative Co Chair for Learning Disability England, expressed hope for the future, stating,
“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?”
As the study continues to gain attention, it is hoped that its findings will lead to meaningful changes in the healthcare system, ensuring that individuals with intellectual disabilities and epilepsy receive the care and support they need to live longer, healthier lives.
