Gaps in services and poor-quality care are causing adults with learning disabilities and epilepsy to die significantly younger from epilepsy related causes, than those who died from non-epilepsy related causes, according to new research.
The paper published in the Journal of Neurology, Neurosurgery and Psychiatry in December, included 9,756 deaths in people with intellectual disability and epilepsy from the English Learning from Lives and Deaths programme between 2016 and 2021.
Researchers Prof Rohit Shankar and colleagues found that epilepsy was the main cause of death in 1,584 (16.2%) people. They found that people in this group died significantly younger, at an average age of 56 years. This compared to 62 years in those who died from non-epilepsy related deaths causes.
Across both groups, those with moderate-to-profound intellectual disability and those of African or Asian ethnicity were at higher risk of death.
The researchers found that risk factors included poor quality of care, gaps in services and lack of annual health checks. Meanwhile, interventions like psychiatry and speech language therapy were found to reduce this risk.
Wholly unacceptable
Prof Shankar, MBE, lead researcher, professor of neuropsychiatry at the University of Plymouth and director of the Cornwall Intellectual Disability Equitable Research (CIDER) unit, said: “Our study shows that among people who also have an intellectual disability, [epilepsy] 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.”
About one in five people with a learning disability also have epilepsy (around 22 in every 100). More severe learning disabilities are linked to a higher risk of also having epilepsy. People with learning disabilities are also known to have a shorter life expectancy than the general population.
Not valued or prioritised
Services for people with learning disabilities and epilepsy have been under question, with the Clive Treacey Safety Checklist, developed to help health organisations meet care and safety standards for people with epilepsy and learning disabilities, discussed in Parliament last month.
This checklist was developed when Clive Treacey died aged 47 following “multiple system-wide failures in delivering his care and treatment” had placed him at “higher risk of sudden death”.
Clive’s sister, Elaine Clarke, said: “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.”
Preventable deaths
Alison Fuller, director of health improvement and influencing at Epilepsy Action, added: “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.
“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! With annual health checks, access to the right professionals and truly joined up person centred care plans, lives can be saved, but too often support is either inconsistent or unavailable.
“The evidence is clear the NHS must act urgently to deliver proactive, coordinated, equitable care, so that everyone with epilepsy and a learning disability has the chance to live a longer, healthier life.”
Epilepsy Action has also developed a guidance to describe what good quality integrated services for people with a learning disability should look like, Step Together. This was created by a multi-disciplinary group of professionals and in partnership with people with epilepsy and learning disabilities and their families.
Epilepsy Action also has easy read epilepsy information, helpful for people with a learning disability or those whose first language isn’t English.
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