Multiple health problems and overmedication underlie premature deaths in people with learning disabilities and epilepsy, say researchers.
And the findings suggest there is no coherent approach to treatment and risk.
Dr Bhathika Perera’s research points to shortcomings in learning disability and epilepsy care
Epilepsy affects one in four
Up to 25 per cent of people in the UK with learning disabilities also have epilepsy. This compares with just 0.6 per cent of the population.
They also die much younger. Epilepsy is linked to 40 per cent of all deaths, alongside other health problems and high medication use.
904 adults in the study
Psychiatrist Dr Bhathika Perera was one of the lead researchers.
His work included 904 adults with learning disabilities and epilepsy. Up to 37 per cent of them also had autism.
Though more than 90 per cent of the adults had a review in the past year, 25 per cent did not have an epilepsy care plan.
Up to 61 per cent had a documented discussion of Sudden Unexplained Death in Epilepsy (SUDEP).
Those who took part were on five medications overall.
Death was ‘potentially avoidable’
In December, an independent review concluded that the death of Clive Treacey, 47, who had complex epilepsy and a learning disability, was “potentially avoidable”.
Perera, of the Barnet, Enfield and Haringey Mental Health NHS Trust, said “collaborative working” is key to better outcomes.
Risk factors for SUDEP should also be “looked into and reduced”.
Also, epilepsy services “vary from one part of the country to another”, said Perera.
Research ‘mirrors’ experiences
Jane Hanna is the chief executive of charity SUDEP Action.
She said the research “mirrors” the charity’s experiences with families.
Hanna said it is “very concerning” that “so many that die have not had access to care planning” or “awareness of SUDEP and seizure safety”.
Dr Perera published his research in the Journal of Neurology.
The Department of Health and Social Care said it was working with the NHS, charities and patient organisations to “improve outcomes”.
Related:
- Hospitals ‘may have caused deaths’
- Research excludes learning difficulties
- We pay a fortune to harm people, says MP
Published: 1 February 2022
