Spike in Scots living with epilepsy as charity launches awareness drive

Epilepsy Scotland pointed to new statistics which shows that an estimated 80,406 people in the country are living with epilepsy. It has raised concerns that thousands of Scots could be at risk without adequate support.

Although it has long been one of the most prevalent neurological conditions nationally, that figure, detailed in statistics published by Public Health Scotland, the national health agency, represents an increase of 38.6 per cent on the longstanding figure of 58,000 cited by charities, health services, and politicians.

Now, as part of National Epilepsy Week, the leading charity has called for more open and informed conversations about epilepsy and its risks, including sudden unexpected death in epilepsy (SUDEP), a rare and fatal complication.

The charity, which works to ensure people living with epilepsy have access to high quality medical, social, educational, and support services, and can be free from stigma and discrimination, said the updated figures showing the number of people living with epilepsy highlighted the importance of ensuring that those affected receive appropriate support.

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Lesslie Young, Epilepsy Scotland’s chief executive, said: “These new figures give us a clearer picture of the number of people affected by epilepsy in Scotland today. Most people with epilepsy live full, independent lives — but for some, the condition brings more complex challenges.

“Our campaign this year focuses on ensuring that people with epilepsy, their families, and clinicians are supported to have sensitive, open conversations about SUDEP. With greater understanding comes greater confidence to manage risk and support wellbeing.”

SUDEP refers to the sudden, unexpected death of a person with epilepsy, where no other cause of death is found. While uncommon, it is one of the most serious potential outcomes of epilepsy. Research suggests that up to 12 per cent of people with difficult-to-manage epilepsy may be affected. In Scotland, it is estimated that up to two people die each week as a result of SUDEP, yet many individuals and families remain unaware of the risk.

Separate Public Health Scotland data shows there has been a clear increase in the number of deaths in Scotland where epilepsy was recorded as the underlying cause on the death certificate.

While there were 104 such deaths recorded in 2008, the number stood at 135 in 2023. The number of men dying where epilepsy is deemed to be the underlying cause went up from 68 to 79 over the same period, with the respective figures for women also up, from 36 to 56.

Epilepsy Scotland’s current campaign, The Seizure that Stole a Future, is focused on sharing personal stories of people whose lives were cut short by epilepsy in an attempt to bolster recognition of the emotional and practical realities families face.

The charity has warned that the longstanding funding crisis in the third sector, coupled with the rise in employer National Insurance contributions, is having a major impact. It has been forced to close one of its support groups due to a lack of funding, with Ms Young warning that the charity was left with “not one centimetre of financial headroom.”