SUDEP Action

Making every epilepsy death count
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A heartfelt thank you on the lead up to Christmas

Blog post


A heartfelt thank you to all in the lead up to Christmas and the New Year. SUDEP Action has helped over 11,500 people in the last year, and because of the success of the Prevent21 campaign, are already doing more.

We have reached thousands of people with epilepsy through the EpSMon app. Yet many of these were people who report into/use EpSMon, show they are at risk, and also report that they were not having their epilepsy reviewed or checked by a health professional.

Our SUDEP and Seizure Safety Checklist is increasing in popularity as a tool with nearly 650 health professionals having registered to use it since its 2015 launch. Recent feedback on the Checklist from clinicians using it, showed it having a positive impact: “A valuable opportunity to asses and address risk issues associated with epilepsy”.

Your support has also meant we have been able to influence government. Our Call to Action in February 2018 and our UK Prevent21 Summit, has spurred support from a broad movement, led by SUDEP Action, to tackle deaths - and we are being heard.

The release of the Public Health England report on rising deaths in people with neurological conditions, quietly onto a website, angered many.  By the summer, the Department of Health was responding to media questions with talk of new guidelines, being the answer to deaths!

But with the help of the BBC and other national broadcasters, we saw the message change again. We were pleased when we met with senior policy makers and the Chair of the Health Select Committee, that there was news of a new workstream in NHS England to include epilepsy. This is good, but is still not nearly enough – how can it be when at least 21 people are dying every week?

We called in the summer for a funded annual review and risk check for those with epilepsy.

We will also continue to push for epilepsy to be included in the Government’s new 10-year plan for the NHS.

This was just one of the recommendations from supporters attending our National Conference in July. Learnings from the experiences of bereaved families on the Epilepsy Deaths Register and from research,  were also centre stage of the Prevent21 Summit held in November; attended by over 70 experts and 43 organisations. If Government was to include epilepsy in the NHS 10-year plan and include the recommendations from the Prevent21 Summit report, we could speed up the pace of change. This report has been endorsed by the All-Party Group for Epilepsy (APPGE) and The Neurological Alliance.

The findings from the Prevent21 Summit will also be published in a special supplement in the Journal 'Epilepsy and Behaviour', in 2019.

In the meantime, we are moving ahead with actions ‘on the ground’ to help fill the painful gaps. Thanks to your help through the Prevent21 campaign, for the six months between April to September 2018, our donations and fundraising income was 77% more than in the same period in 2017. 

At a time of great uncertainty nationally, we are really pleased to say that we remain positive and able to push forward. For now, we were thrilled to develop a collaboration with Newcastle University, who join us in our work on the Epilepsy Deaths Register.  Their report on over 500 UK deaths is used by us to influence change, most recently informing the Ministry of Justice on how to improve the experience of families that are caught up in the coronial system. This included the help we have been able to offer families this year, with an integrated support service, including a case worker.

With your help we continue to grow and can do more. In Spring 2019, we will be moving to an office in Wantage that will help us to that. We also have some very positive announcements for 2019, which I look forward to sharing with you next year.

In the meantime, everyone at SUDEP Action is thinking of you all and sending our best of wishes at Christmas. Also, a huge thank you to all the team at SUDEP Action and all the charity supporters.

Jane Hanna


   Jane Hanna OBE
   CEO, SUDEP Action