SUDEP Action

Making every epilepsy death count
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From the CEO - Deaths won't stop without action

As I write, I have been CEO of SUDEP Action for just over four months, taking over from Jane Hanna, the charity’s founder and CEO of more than 28 years. Jane has stepped back to focus on  important policy work and enjoy some well-deserved extra family time. I’m delighted we can still benefit from her expertise. In the nine years I’ve worked at SUDEP Action, I have seen a lot of progress. But there is still much to do, and I’m ready for this challenge.

The mission of the charity has, and always will be, to do all we can to prevent epilepsy deaths. We want to make sure that all epilepsy deaths are acknowledged and learnt from, and we also want to be there as a lifeline, a voice and an ally to anyone bereaved by epilepsy. We’re currently working on our new charity strategy, setting out our ambitions for the coming years. I’d love to get your input and to hear what is important to you. We’ll be asking you for this in the coming months. This year, we'll be also be launching our Paediatric SUDEP & Seizure Safety Checklist. Our adult Checklist is launching in other countries (it’s already in Australia), and the work begins to refresh our EpSMon app and publish even more research from our Epilepsy Deaths Register. On top of our ongoing policy work, bereavement casework, support and counselling, we'll be holding campaigns such as SUDEP Action Day and Online Epilepsy Memorial Day, and supporting research into deaths, their prevention & their impact.

To help people with epilepsy live as safely as possible, and to continue to offer the world’s only specialist epilepsy bereavement service, is no small feat. It’s a testament to the small but mighty SUDEP Action team. But the world we work in is getting even more challenging, with health and social care systems at breaking point, and many people affected by the cost of living crisis. All this comes on top of the ever-present concerns anyone who has been bereaved by epilepsy faces on a daily basis.

SUDEP Action's income dropped by 50% during the pandemic; yet thanks to your unwavering support we were tenacious and kept our vital work going. However, the recent UK Civil Society 2023 almanac showed smaller charities like ours receive only 13% of the total funding given to the charity sector (compared to the top 4% of large charities who get 83% of the funding). It is harder than ever to ask for support, and for us to push for urgently needed change.

This is why our plans are ambitious – because they need to be. We must continue to be there for anyone bereaved by epilepsy, and to continue raising awareness amongst people with epilepsy and health professionals. If we don’t, who will?

Deaths won’t stop without action, and we won’t stop until deaths do. I’ll hope you’ll stand alongside us in this fight.

Warmest wishes

Sammy Ashby, SUDEP Action CEO