Story Highlight
– Early deaths linked to health inequality for learning disabilities.
– Ethnic minorities face higher epilepsy-related mortality risks.
– Need for systemic redesign in epilepsy care services.
– Study reveals significant disparities in death age averages.
– Advocates call for urgent, equitable healthcare improvements.
Full Story
Health disparities and a lack of preventative measures are contributing to premature fatalities among individuals with learning disabilities and epilepsy, according to a recent study. The research, which has been published in the Journal of Neurology, Neurosurgery, and Psychiatry, examined close to 10,000 deaths linked to epilepsy from 2016 to 2021. The authors suggest that implementing focused interventions—such as annual health assessments, accessible multidisciplinary care, greater representation of ethnic minorities, and the incorporation of specialist psychological and speech and language therapy—could significantly enhance lifespan for affected individuals.
Furthermore, the study advocates for a fundamental restructuring of services to mitigate the risk of preventable epilepsy-related deaths among those with intellectual disabilities moving forward.
Professor Rohit Shankar MBE, who holds a position as Professor of Neuropsychiatry at the University of Plymouth and directs the Cornwall Intellectual Disability Equitable Research (CIDER) unit, highlighted the seriousness of the findings, noting that, “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.”
The issue of epilepsy affects approximately 20-25% of individuals with learning disabilities, equating to around 300,000 people, in stark contrast to just 1% in the wider population. However, there has been a notable lack of comprehensive, nationwide data regarding the factors that contribute to epilepsy-related mortality among individuals with intellectual disabilities.
This large-scale study has revealed that epilepsy accounts for the primary cause of death in over 16% of people with learning disabilities who have the condition. Those with epilepsy typically have an average lifespan of 56 years, which is notably shorter compared to the 62 years for individuals whose death was listed as due to other health issues.
Those disparities become more pronounced when examining mortality rates across different ethnic groups. The research indicates that African and Asian individuals die, on average, at just 36 years of age, significantly younger than their White British counterparts.
Professor William Henley, a leading figure in medical statistics at the University of Exeter Medical School, expressed hope that the study’s findings would motivate necessary changes for families affected by both epilepsy and learning disabilities, 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. 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 was a collaborative effort involving teams from the University of Plymouth, the University of Exeter, and the Cornwall Partnership NHS Foundation Trust, along with partnerships with institutions from across the UK. The team conducted their analysis based on data from the Learning from Lives and Deaths Review Programme (LeDeR), which aims to glean insights from the experiences of individuals with learning disabilities and autism to enhance local healthcare services.
Pauline Heslop, who served as the Programme Manager for the LeDeR Programme in England from 2015 until 2021 and now holds an emeritus professorship at the University of Bristol, noted, “I am pleased that the LeDeR data is still being used effectively to highlight areas of disparity in deaths of people with intellectual disability, and to indicate where policy and practice needs to be strengthened. It is of significant concern that epilepsy-related deaths are associated with a poorer quality of care and gaps in service provision when compared to non-epilepsy related deaths – issues which need addressing at individual and systemic levels.”
In response to the findings, the authors have collaborated with various charities and healthcare organisations to develop targeted programs aimed at supporting individuals affected by learning disabilities and epilepsy. An example of this is the Clive Treacey Safety Checklist, introduced through a partnership involving NHS England Midlands, the University of Plymouth, and the charity SUDEP Action. The checklist is named after Clive Treacey, who passed away at the age of 47 after his healthcare needs were not adequately addressed while in a psychiatric facility. His sister, Elaine Clarke, shared her distress at the 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 implications of the study’s findings received attention from various advocacy groups. Jane Hanna OBE, co-founder and Director of Policy and Influencing at SUDEP Action, remarked on the prevailing gaps in care. She stated, “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. Today there is a stark lottery between the local NHS areas that are working with the charity to adopt the free SUDEP and Seizure Safety Checklist and areas that are still operating in ignorance that epilepsy is a cliff-edge condition that requires advocacy and risk management.”
Alison Fuller from Epilepsy Action commented on the urgent need for systemic change, declaring, “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 in our health system. Even more concerning is the finding that people from African and Asian backgrounds face an even greater risk of dying prematurely, exposing deep-rooted and persistent inequalities. These are preventable deaths.”
Kate Chate, Family Member Election Representative Co-Chair for Learning Disability England, expressed optimism over the research, indicating that understanding the causes behind early deaths is crucial for future prevention efforts. She noted, “It is so encouraging to see research into the causes of early and preventable deaths of people with learning disabilities. Knowing ‘why’ is surely the start of the road to prevention? This paper shows the stark and alarming difference for people of Black, Afro-Caribbean, and Asian origins. And it reveals that input from psychiatrists and speech & language therapists is particularly important. This data-driven advocacy for better services is not only welcome but significant.”
Our Thoughts
To address the concerning findings on epilepsy-related deaths among individuals with learning disabilities and to prevent future incidents, several key measures could have been implemented. Firstly, ensuring adherence to the Health and Safety at Work Act 1974, which mandates the provision of safe systems of work, could have led to better integration of healthcare services for this vulnerable group.
Implementing regular health checks as outlined in the NHS guidelines would facilitate early identification and management of epilepsy, thus reducing associated risks. The lack of tailored, multidisciplinary care underscores a breach of the Care Quality Commission’s Essential Standards for healthcare services, particularly regarding the provision of person-centred care.
Key safety lessons include the importance of effective communication and advocacy for patients with disabilities, as highlighted by the necessity for specialized support from psychiatric and speech and language professionals. By employing tools like the Clive Treacey Safety Checklist more broadly across healthcare settings, organizations could foster a proactive approach to care, thereby mitigating the risk of avoidable deaths.
To prevent similar incidents, the establishment of systemic redesign in service provision, as advocated in research, is essential for ensuring equitable health outcomes for diverse ethnic groups within this population.
