“Too many adults with a learning disability and epilepsy are still at risk of dying prematurely”
New research on the links between epilepsy and learning disabilities.
New study finds epilepsy is a leading cause of death among those with a learning disability and epilepsy.
Led by Professor Rohit Shankar, this research is the largest national study of epilepsy-related mortality in people with learning disabilities in the UK to date. A considerable 20-25% of people with learning disabilities are also living with epilepsy, compared to 1% of the general population. The research uses data from the Learning from Lives and Deaths programme (LeDeR) which has captured up to 65% of deaths in people with a learning disability between 2016-2021.
Key findings suggest that epilepsy was the primary cause of death in 16.2% of deaths of those with a learning disability and epilepsy. Further to this, the study shows that these deaths occurred at a significantly younger age than those who had a non-epilepsy related death. The research also cited disparities on an ethnicity basis, finding that those with African and Asian ethnicities were dying younger than their White British counterparts.
Learnings from the research noted that poor quality of care and gaps in service and provision increased risk. Whilst protective steps such as regular annual health checks, psychiatric, speech and language therapy were linked with reduced risk. Ultimately this study highlights the need for an integrated and multidisciplinary approach with care plans that addresses inequality and supports the needs of people living with both epilepsy and a learning disability.
SUDEP Action Research Manager; Ben Donovan said: “In 2021, Clive Treacey’s independent review highlighted how poor-quality care of someone with a learning disability and epilepsy could lead to a preventable death. Now, at a national level, this study indicates that Clive was not an isolated incident and that too many adults with a learning disability and epilepsy have been, and are still, at risk of dying prematurely from preventable causes. This important paper emphasises the need for targeted, systemic improvements in healthcare delivery to reduce avoidable epilepsy-related deaths and improve life expectancy in this vulnerable population.”
Our My Life with Epilepsy project, released in 2022 provides a range of resources to support people living with a learning disability and epilepsy as well as support for their carers. You can find all of our My Life with Epilepsy resources here.
Learn more about the Clive Treacey Checklist here.
