#EpilepsyMatters: 20 years of our Helpline

As National Epilepsy Week comes to a close, our Chief Executive, Lesslie Young, looks at Epilepsy Scotland’s 20th anniversary and how vital this service is to people living with epilepsy.

When someone first begins to experience seizures and is then diagnosed with epilepsy, it can be a very confusing time and for some, overwhelming.

The impact of epilepsy on someone’s life can be profound, raising questions about the condition itself, and how it can be managed.

For many, it can feel like their world has come to a stop.

At any of these points, Epilepsy Scotland’s national Helpline can help – we can help someone with more information on the condition and discuss the support services we provide or signpost to one of our partners to help someone move forward again.

Our helpline is not just for someone who is newly diagnosed. We are here for anyone living with epilepsy, their friends, family, and epilepsy professional, or someone such as your employer or a local politician’s office who would like to learn more about the condition.


Helpline anniversary

This month, the Helpline has been celebrating its 20th anniversary. It’s a fantastic achievement for Epilepsy Scotland to have run this vital service for two decades now and we hope for many more decades to come.

In 2022/23 alone, 1,870 people contacted our Helpline. That is 1,870 people listened to and were provided with support, information, signposting, help, and reassurance.

It is also a service that adapts as a result of feedback from the people who use it. For example, we run year-round feedback surveys to tailor what we offer and during the pandemic, Uschi, one of our Helpline & Information Officers, had an innovative proposal to expand the helpline to provide more emotional support to those most in need.

Her idea was to offer a ‘Check-in service’ where someone would receive a phone call once a week for ten weeks to find out how they are doing and give them the space and time to talk about how they’re feeling.

It has been such a success that Uschi and her colleague, Stuart, continue to run the Check-in service, which last year supported 34 individuals most in need in addition to Helpline calls.

Uschi and Stuart are highly valued members of the Epilepsy Scotland team and the support they have provided to people living with epilepsy has been second to none.

We launched the Helpline in 2003 with the help of former Hibernian footballer Alen Orman, who lives with epilepsy.

When we had a new photo taken to promote this anniversary, it was fitting to keep the footballing theme going by involving Owen Coyle Jnr from Queen’s Park FC and John Richmond from their supporters’ club.

The Spiders have been champions of the charity since the tragic death of Martin Kelly, a Queen’s Park Supporters’ Club member, ten years ago due to Sudden Unexplained Death in Epilepsy (SUDEP). We thank Queen’s Park for their continued support, which is hugely appreciated.

If you would like to call the Helpline, it is open weekdays, apart from every second Friday, between 10am-4.30pm on 0808 800 2200. It is free and completely confidential.