People dying because of ‘missed opportunities and health inequalities’
The average age of death for someone with epilepsy as well as a learning disability is just 56.
New research has highlighted how missed prevention opportunities and health inequalities can result in the early deaths of people living with epilepsy and learning disabilities.
People with a learning disability die on average at the age of 63 – some twenty years earlier than the general population. However, for those with epilepsy as well as a learning disability, the average age of death is 56. Shockingly, for ethnic minorities, this drops to just 36.
Around 1.2million people in England have some form of intellectual disability, with epilepsy estimated to impact 20-25% of them – up to 300,000 people – compared to just one per cent of the general population.
The new research from University of Plymouth looked at nearly 10,000 deaths between 2016 and 2021 in a global study examining epilepsy-related deaths in adults with intellectual disabilities and epilepsy.
Writing in the Journal of Neurology, Neurosurgery, and Psychiatry, the study’s authors say poor quality of care, service gaps and the lack of annual health checks should be considered unacceptable in modern healthcare.
SUDEP Action has campaigned relentlessly to better recognise the needs of those with learning difficulties, along with our lived experience families including our SUDEP Action Policy Champion Elaine Treacey.
Elaine 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.”
SUDEP Action was commissioned to develop the Clive Treacey Safety Checklist working in coproduction with NHS England Midlands, the University of Plymouth, Cornwall Partnership NHS Foundation Trust.
SUDEP Action safety tools – the SUDEP and Seizure Safety Checklist and the EpSMon app – are highlighted in the study as resources that should be used more widely to recognise and act on epilepsy risk.
Jane Hanna OBE, SUDEP Action Director of Policy and Influencing, said: “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.”
