People with epilepsy face ‘unacceptable’ barriers, outgoing charity head says

People living with epilepsy in Scotland “still face unacceptable barriers”, the outgoing head of Scotland’s leading epilepsy charity has said.

Lesslie Young made the comment as she steps down as chief executive of Epilepsy Scotland after 17 years in the role.

During her tenure Ms Young led the organisation through some of the most challenging periods in recent history, including the Covid-19 pandemic and the ongoing economic pressures.

The charity said throughout her time she has led with “clarity and resilience”, and ensured vital services continued to be delivered to people living with epilepsy throughout Scotland.

Ms Young said she now leaves the organisation “in a strong position”, and that she is “looking forward to taking on new challenges and exploring the next chapter”.

“I am incredibly proud to have served as chief executive of Epilepsy Scotland for the past 17 years,” she said.

“It has been a privilege to work alongside such committed staff, volunteers and supporters, and to see the real difference we have made together to the lives of people affected by epilepsy.”

There are around 80,000 people living with epilepsy in Scotland, making it the most common serious neurological condition in the country.

The charity said up to two people each week die from epilepsy-related causes.

Reflecting on the future of epilepsy support in Scotland, Ms Young indicated there is still some way to go to address the problems facing those living with the condition.

“While we have made progress, people living with epilepsy in Scotland still face unacceptable barriers, from access to services to wider understanding and support,” she said.

“There remains a great deal of work to do, and I look forward to seeing how Epilepsy Scotland continues to evolve and respond to these challenges in the years ahead.”

She added that with the Holyrood election fast approaching, “these are critical times for epilepsy”.

“Too many people across Scotland are still experiencing delays in diagnosis, inconsistent access to specialist care, and a lack of support that puts their health and lives at risk,” she said.

“Timeous access to high-quality care is not a nice-to-have, it is essential, and it is currently not good enough.

“The case for change has been clear for years. Action should have come long ago.

“I will continue to be a strong voice for epilepsy for the remainder of my time as chief executive, and I expect to see real, tangible progress.”

Dr Susan Duncan, chairwoman of Epilepsy Scotland, said Ms Young will be “greatly missed” by everyone associated with the charity.

She also paid tribute to Ms Young’s work as a “staunch advocate” of those living with epilepsy in Scotland.

“Despite advances in modern medicine, there are still widespread misconceptions about the condition,” Dr Duncan said.

“Lesslie’s tireless advocacy in Holyrood, the Crown Office and across the business community has done much to challenge and change this.

“She was recently awarded an OBE, which, with typical modesty, Lesslie said was for everyone who works for or is associated with Epilepsy Scotland.

“The board would like to thank her for her exceptional service and wish her every success in her next chapter.”

The board of Epilepsy Scotland will begin the process of recruiting a new chief executive in due course, with further details expected in the coming weeks.

Epilepsy Scotland is the country’s leading epilepsy charity, supporting people living with epilepsy, their families and carers.

The organisation provides direct services, information and advice, and works to improve awareness, challenge stigma and influence policy to ensure better outcomes for those living with epilepsy in Scotland.