SUDEP Action

Making every epilepsy death count
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From our CEO - Sammy Ashby


As the ninth SUDEP Action Day approaches, my first as CEO, I’m both excited and anxious to see how organisations worldwide get involved.

Excited – because without fail, people from around the world come together on this day to take action. Doing all they can to continue raising vital awareness of SUDEP. And sharing the positive things that can, and are, being done around the world to help people with epilepsy live as safely as possible. Anxious because this year, it feels like the stakes are even higher to get things right and not let our progress stand still or go backwards. Here in the UK, our National Health Service is under incredible pressure, made worse by the pandemic (both during and after).

Epilepsy isn’t a government priority either, despite the World Health Organisation focusing on epilepsy in its global action plan. Policy changes are happening that could put people even more at risk, if the risk information provided isn’t balanced, and people with epilepsy aren’t put at the centre of these changes. I know that other countries around the world also face their own challenges when it comes to epilepsy safety.  

Today, more people understand and accept that discussing SUDEP and epilepsy risks matters. However, it still doesn’t happen routinely enough, like it does with other health conditions. I suspect the stigma around ‘not wanting to worry’ people with epilepsy by talking about SUDEP plays a big part here. I’ve worked with many wonderful, strong people with epilepsy and their families over the years and I find this mindset frustrating. Instead of finding ways to sensitively give knowledge and control to people with epilepsy, saying nothing and staying silent keeps it away from them – implying they can’t be trusted or might not be ready to have an equal role in their own epilepsy plans.

There is genuine hope that, as a community, we can keep pushing forward to give people with epilepsy all the information they need to make the best, informed choices for themselves. We can also show that by working alongside those bereaved by epilepsy, we recognise what went wrong in the past, learning key lessons to help save lives in the future.

#MySafetyMatters turns the focus to where it always should be when it comes to SUDEP, towards those living with epilepsy and helping them stay safe and manage risks. If people with epilepsy aren’t aware of SUDEP, how can they take positive steps to combat it? ‘You don’t know, what you don’t know’ comes to mind here.

Most people want more information and more honesty and they want to talk about fears, concerns and action plans in an open and positive way with their health professionals. They want their safety to be taken seriously by those around them, and for it to be an important part of their care.

So, I hope this year, you’ll do what you can to show that epilepsy safety really does matter, not just on SUDEP Action Day, but every day.  

Best wishes

Sammy Ashby