"IT is very hard to deal with and cope with the constant fear of having seizures. It’s the unpredictability of epilepsy that makes your mental health worse.”

That was one of many similar quotes from a survey conducted earlier this year by me and my colleagues at Epilepsy Scotland, responded to by 718 people, on the link between epilepsy and mental health.

I have been working for Epilepsy Scotland for the past year and my knowledge of the condition before taking up post was very limited.

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But I’ve come to understand just how common a condition it is – around one in 97 people live with epilepsy.

If you apply that stat to Scotland’s largest city, for example, there could be around 6500 Glaswegians living with epilepsy. That’s also between 55,000 to 60,000 people across Scotland.

Epilepsy causes someone to have repeated seizures which start in the brain. The unpredictable nature of these seizures can understandably cause a great deal of anxiety around never knowing when one will occur. And when one does happen, will it happen in a safe place and with people who will help if needed?

Sadly, I’ve read of numerous experiences of people living with epilepsy where they have been kicked off a bus because the driver thought they were drunk. Instances like that reflect a wider societal lack of understanding of epilepsy, which needs to be addressed as a priority.

But epilepsy is more than seizures. As another responder to the survey said: “Epilepsy is such a debilitating condition. It affects many aspects of your life.”

Some 54% of people living with the neurological condition said it had a “significant impact” on their mental health. Furthermore, one in three said they had depression, 46% had anxiety and one in four had both.

These are alarming figures but to those working in the sector, they are not surprising. In fact, I have spoken to some epilepsy professionals and people living with the condition who were actually surprised the figures weren’t even higher.

IN addition, the survey found that 72% said epilepsy impacted their social life and 47% said it affected their relationships with friends. Some 61% said it impacted their employment opportunities and 58% said their physical health.

If there are such significant barriers to someone living with epilepsy having a social life, having a career, and keeping in good physical health, then it will likely lead to poor mental health.

The survey responses and stats above should act as a wake-up call to government that there is not enough mental health support in place for people living with epilepsy.

The Scottish Government made a number of big commitments on mental health in its Programme for Government following the 2021 Scottish Parliament election.

There were pledges to see “increased investment in mental health – at least 25% over this parliament” and “ensuring that at least 10% of frontline NHS spend goes towards mental health”.

At a time when so many budgets are being squeezed as a result of the cost of living crisis, it’s absolutely vital government continues with its plans to prioritise increased investment in mental health services.

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And as part of these plans for increased investment, supporting the mental health of people living with epilepsy should also be a priority.

According to the survey responses, increased societal understanding of epilepsy, greater access to mental health professionals, an increase in the number of in-person epilepsy support groups and early screening for mental health issues are all key to improving the mental wellbeing of people living with epilepsy.

It’s now for government to outline how it will work with stakeholders to achieve these outcomes.