CAMPAIGNERS have called for a change in how epilepsy services are delivered after "alarming" new research revealed that nearly 80 per cent of deaths in young adults could have been avoided.
It comes as researchers behind the first ever national review into deaths linked to the condition warned that "little has improved in epilepsy care" despite previous findings of premature mortality.
They describe the situation as a "major public health problem in Scotland", adding that deaths "are not reducing, people are dying young, and many deaths are potentially avoidable”.
In particular, the Edinburgh University team found that adults aged 16 to 24 were five times more likely to die compared to the general population, a problem they said may be linked to the "vulnerable period of transition from paediatric to adult care".
Overall, for adults with epilepsy aged 16 to 54, the mortality rate was more than double that for the age group as a whole, with as many as 76% of these deaths potentially preventable and the majority occurring among patients from the most deprived areas.
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The researchers also found that during the period covered by the study - from 2009 to 2016 - 62% of all epilepsy patients who died had been admitted to hospital for seizures in the years before their deaths, yet only 27% were subsequently referred on to specialist neurology clinics.
Lesslie Young, chief executive of Epilepsy Scotland, said: “The results of this research make for very uncomfortable and alarming reading.
"It raises serious questions about the way epilepsy services are delivered and supported across Scotland.
“The fact so many people with epilepsy are dying young, many from avoidable causes, is a real wake up call to the Scottish Government and NHS Health Boards that epilepsy services need investment now."
Ms Young stressed that the research should be a "catalyst for a change in policy and epilepsy service delivery", adding that the Covid pandemic had "only served to exacerbate an already overstretched and chronically underfunded workforce and service".
The study, published in the journal Epilepsia, identified a total of 1,921 epilepsy deaths in Scotland over the seven-year study period, including 553 in people aged 16 to 54.
Of these, 166 were bracketed as 'sudden unexpected deaths in epilepsy' (SUDEP) - such as fatal seizures - of which 144 occurred in the home.
Overall, three quarters of epilepsy-related deaths in 16 to 54-year-olds were considered by the researchers to be potentially avoidable.
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Poorly controlled epilepsy, cardiovascular disease, and alcohol and drug abuse were cited as causes of avoidable deaths, with the authors noting that up to half of these young adults may have also had mental health problems.
Data collected from 100 GP practices on patients who had not attended hospital for treatment of their epilepsy showed half had mental health issues.
They noted that while it is “not often discussed with patients", epilepsy "is associated with significantly increased risk of premature death".
They added: "Some of those deaths may be unrelated to epilepsy. However, a substantial proportion relate to epilepsy itself, its treatment, or co-morbidities worsened by epilepsy.”
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Co-author Dr Susan Duncan, of Edinburgh's Muir Maxwell Epilepsy Centre, said: “Twenty years ago a UK-wide audit of epilepsy deaths raised concerns about the standard of care adults with epilepsy received.
"Our study shows premature mortality in adults with epilepsy has not decreased since that study, suggesting that either the standard of care has not improved, or preventable deaths are still occurring despite improvements.
"Thus an up-to-date audit of epilepsy care is urgently needed, along with parallel studies to make clear the mechanisms underlying epilepsy-related deaths.”
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