Preventable Deaths: Study Reveals Alarming Disparities in Epilepsy Care for People with Intellectual Disabilities
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A new study reveals that individuals with intellectual disabilities and epilepsy in England face significantly higher risks of premature death due to missed prevention opportunities and systemic health inequalities.
Around 1.2 million people in England live with some form of intellectual disability, and an estimated 20-25% of them – up to 300,000 individuals – are affected by epilepsy, a rate far exceeding the 1% prevalence in the general population. Until recently, a comprehensive, population-level understanding of the factors contributing to epilepsy-related deaths within this vulnerable population was lacking.
This groundbreaking research, analyzing nearly 10,000 deaths between 2016 and 2021, represents the largest global study to date examining epilepsy-related mortality in adults with both intellectual disabilities and epilepsy. The analysis revealed that epilepsy was the primary cause of death in just over 16% of cases,and individuals with epilepsy died,on average,six years younger – at age 56 – than those whose deaths were attributed to other causes.
Stark Ethnic Disparities Highlight Urgent Need for Equitable Care
The study’s findings underscore especially alarming disparities based on ethnicity. Individuals of African and Asian descent experienced significantly shorter lifespans, dying at an average age of just 36, compared to their White British counterparts. This stark difference points to systemic inequities in access to quality care and highlights the urgent need for targeted interventions.
The study was a collaborative effort 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, alongside colleagues from universities across the UK.
“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,” saeid a professor of medical statistics at the University of Exeter Medical School. “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 leveraged data from the Learning from Lives and Deaths Review Programme (LeDeR), a programme dedicated to learning from the experiences of people with learning disabilities and autistic individuals to improve local services.
According to an emeritus professor of intellectual disabilities studies who previously managed the LeDeR Programme, the continued use of LeDeR data is crucial for identifying disparities and strengthening policy and practice. She emphasized the concerning link between epilepsy-related deaths and poorer quality of care compared to deaths from other causes.
Families Demand Action, Safety Checklists Offer a Path Forward
The study’s findings have resonated deeply with families affected by these issues.Elaine Clarke, whose brother Clive died at age 47 after receiving inadequate care in a psychiatric unit, expressed her outrage.”It’s deeply shocking to see that so many people with a learning disability continue to die avoidable deaths because they do not receive the epilepsy care and treatment that they should,” she stated. “People like my brother Clive are not valued or prioritized.”
Charities and advocacy groups have echoed these concerns, calling for a complete overhaul of NHS care for individuals with epilepsy and intellectual disabilities. SUDEP Action, a leading organization in the field, highlighted the inconsistencies in care across different regions of england. A representative from the organization noted the importance of widespread adoption of the free SUDEP and Seizure Safety Checklist.
Epilepsy Action emphasized the preventable nature of these deaths,advocating for annual health checks,access to specialized professionals,and truly integrated,person-centered care plans.
The study also highlights the importance of tools like the Clive Treacey Safety Checklist – developed in response to Clive’s tragic death – and the SUDEP and Seizure Safety checklist as resources that should be utilized more broadly. .
Kate Chate, a family member representative for Learning Disability England, applauded the research, stating, “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.”
The findings serve as a critical call to action, demanding systemic change to ensure equitable and effective epilepsy care for all individuals with intellectual disabilities, and ultimately, to save lives.