SUDEP Action

Making every epilepsy death count
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Reasons to be Hopeful

Welcome to Jane Hanna's Reasons to be Hopeful blog for January. Jane is Chief Executive of SUDEP Action

One of my New Year resolutions was to start a blog.  I feel so uplifted because of all the work and energy going into tackling prevention of epilepsy deaths. 

I feel particularly good about the people I have worked with over the years who have had the tenacity to make all this happen. So many research teams and bereaved families have driven this agenda. There is a substantial body of work on epilepsy mortality and prevention is within our grasp.
We have the knowledge on epilepsy deaths.

2015 Systematic Review on the Causes of Epilepsy Deaths

In 2002, Baronness Gould, who chaired the All Party Parliamentary Group on Epilepsy, led an epilepsy debate in Parliament and said “We have the answer to potential avoidability”.

She was talking about the evidence from our National Audit of Epilepsy Deaths which is still cited today as a baseline report on potential for avoidance. In 2010, SUDEP Action commissioned the largest population study in the UK on epilepsy mortality. The research recommended the development of an intervention in general practice that would flag up people at risk so that there could be a step-up in epilepsy care.

This month we have published a systematic review of epilepsy mortality which was presented at the annual meeting of the Royal College of General Practitioners. It shows, yet again, that there is potential for prevention and that the need for intervention in the community is long overdue. 

I hope all of this helps researchers to access funding for projects aimed at preventing deaths.  This year we need all the help we can get. 

In the meantime thanks to Kt’s fund we are funding a project in Devon and Cornwall which has already led to GPs identifying people at risk and referring them for specialist care. The project has been praised by the local NHS. 

We have the knowledge on SUDEP

I was proud to lead a team that launched the new SUDEP Global Conversation website.It is not only an incredible knowledge repository, it is a source of hope. It evidences a substantial body of work on SUDEP. It also shows quite how popular SUDEP has become as a field of research and advocacy since our first Global Conversation book in 2005.  For some of us this was unimaginable when we started.

It was wonderful that 60 experts gave their time to select 300 of the most important and significant research articles on SUDEP and wrote lay summaries for professionals in the community and the public. 38 families contributed inspiring stories. They are just a few of the thousands of bereaved families who are powerful drivers of change and who have already changed the world. It was a wonderful experience working closely with Epilepsy Australia and SUDEP Aware on a resource for everyone around the world.  It involved Rosey, Tamzin, Denise and I working night and day to produce the new resource, but it was worth it. 

Follow me month by month for our Work Programme for 2015

The whole team at SUDEP Action are very excited about our programme of work in 2015. There is so much going on now  that we are able to bring you news each month, of a project or on practical interventions that are being used now to reduce risk.