Study shows people with epilepsy and learning disabilities at risk of earlier death due to health inequalities
New research led by experts from UK universities and Cornwall Partnership NHS Trust, reveals that people living with epilepsy and learning disabilities in England are at risk from earlier death due to a combination of missed prevention opportunities and health inequalities.
While epilepsy affects one percent of the general population, this figure rises to 22.2% for people with learning disabilities. The researchers analysed nearly 10,000 deaths of adults with intellectual disabilities and epilepsy between 2016 and 2021. This is the largest global study examining epilepsy-related deaths.
Epilepsy was found to be the primary cause of death in just over 16% of people with learning disabilities and they died at a significantly younger average age – 56 – compared to 62 – than people who had other issues identified as the primary cause of death. However, the study also looked at mortality based on ethnicity, and African and Asian individuals died much younger, at an average age of just 36.
The researchers are calling for a systemic service redesign because existing interventions including annual health checks, specialist psychiatric and speech and language therapy support are rarely administered in a routine manner. These interventions are effective at increasing a person’s length of life but there are service gaps and poor quality of care which is not acceptable in modern healthcare.
Rohit Shankar MBE, Professor of Neuropsychiatry at the University of Plymouth and Director of its Cornwall Intellectual Disability Equitable Research (CIDER) unit, said: “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 study’s authors have been working for several years with charities and other healthcare organisations who support people affected by epilepsy and learning disabilities.
Nicola Swanborough, Head of External Affairs at Epilepsy Society commented:
“This paper highlights the shocking health inequalities experienced by people with learning disabilities. It is alarming to read that some of the most vulnerable in our society are not being supported to access health interventions which could improve quality of life, and are consequently dying at an earlier age than those in the general population. It is even more shocking to learn that the risk of mortality increases further for this group in black and Asian communities.
“It is vital that this is addressed at a systemic level so that the needs of those who may struggle with communication are met in full and they are able to live long and fulfilling lives.
“At the Epilepsy Society, we care for 100 adults with complex epilepsy and associated disabilities. The people we support have access to a multi-disciplinary team including occupational therapists and speech and language therapists. Every day we see the difference this can make to a person’s life and this is the level of care which should be available to everyone with a learning disability.”
‘Epilepsy-related premature mortality in adults with intellectual disability in England: a population-based analysis’ by Rohit Shankar, William E Henley et al. in the Journal of Neurology, Neurosurgery, and Psychiatry