A groundbreaking study conducted by experts from the University of Plymouth, the University of Exeter, and Cornwall Partnership NHS Foundation Trust has revealed alarming findings about the mortality risks faced by individuals with intellectual disabilities and epilepsy. The research, which analyzed nearly 10,000 deaths between 2016 and 2021, is the largest global study of its kind and highlights significant disparities in epilepsy-related mortality.
According to the study, epilepsy was the primary cause of death in over 16% of the cases examined. Alarmingly, individuals with intellectual disabilities who succumbed to epilepsy died at an average age of 56, significantly younger than those with other primary causes of death, who had an average age of 62. The research also uncovered stark ethnic disparities, with African and Asian individuals dying at an average age of just 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 them, equating to up to 300,000 individuals. This is in stark contrast to the 1% prevalence of epilepsy in the general population. Despite the existence of targeted interventions such as annual health checks and access to multidisciplinary care, these are not uniformly administered, contributing to the higher mortality rates.
The study’s findings underscore the urgent need for systemic changes in healthcare delivery for this vulnerable population. Rohit Shankar MBE, Professor of Neuropsychiatry at the University of Plymouth, emphasized the critical nature of the issue, stating:
“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 researchers have called for a comprehensive redesign of healthcare services to prevent avoidable deaths. The study highlights the importance of interventions such as psychiatric support and speech and language therapy, which are currently underutilized. William Henley, Professor of Medical Statistics at the University of Exeter Medical School, remarked:
“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.”
This research was conducted using data from the Learning from Lives and Deaths Review Programme (LeDeR), which aims to improve services by learning from the lives and deaths of people with learning disabilities. Pauline Heslop, Emeritus Professor of Intellectual Disabilities Studies at the University of Bristol, noted the ongoing relevance of LeDeR data in highlighting disparities and informing policy improvements.
Community and Charitable Responses
The findings have been met with support from UK-based charities advocating for better care for individuals with epilepsy and intellectual disabilities. Jane Hanna OBE, Co-Founder of SUDEP Action, emphasized the need for consistent use of tools like the SUDEP and Seizure Safety Checklist, which have been developed in collaboration with healthcare organizations.
Elaine Clarke, whose brother Clive Treacey died due to inadequate care, expressed her concerns:
“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.”
Charities such as Epilepsy Action and Learning Disability England have echoed these sentiments, calling for immediate action to address the inequalities highlighted by the study. Alison Fuller from Epilepsy Action stated:
“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 and Future Directions
The study’s authors and supporting organizations are advocating for the implementation of proactive, coordinated, and equitable care strategies to extend the lives of those affected. The research serves as a critical reminder of the disparities in healthcare and the need for systemic reform to protect vulnerable populations.
As the healthcare community and policymakers digest these findings, the hope is that they will lead to tangible changes that ensure all individuals, regardless of their intellectual or ethnic background, receive the care and support they need to live longer, healthier lives.
