SUDEP Action

Making every epilepsy death count
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Latest developments

First a big thanks to everyone who has helped with the 529 reports to The Epilepsy Deaths Register, –this really helps us push forward in getting the voice of the families heard. At a time when there are multiple campaigns to politicians on epilepsy deaths, we are in a powerful position to represent the voice of bereaved families about the struggles being faced on the ground. Everyone’s situation is so individual, but families’ overwhelmingly report lack of awareness of risk, and a need for questions to be answered and lessons learnt. This was also the simple message from our National Audit report – Deaths in the Shadows in 2002, that found 42% of deaths might be avoided, and from numerous national reports and enquiries since then. We will bring this message loud and clear to all those that need to hear it over the next few months. 

We may never know why there has been such long-standing stigma to talking about risk within and outside of the epilepsy community, but making it happen is long over-due. I have been party to numerous major research funding bids involving four leading universities hoping to answer this question since 2010, but decision panels have turned these down because it is felt that the work has already been done (not true!) or because preference favours scientific over qualitative / community-based research into epilepsy mortality, risks and SUDEP. This jars against our knowledge of the importance of needing change to happen now in the epilepsy community; while investigations into possible interventions are still developing, in order to help save lives in the meantime. Ultimately, this lack of awareness by those that could help is deeply disturbing when a leading editorial in the British Medical Journal just last year highlighted the massive gap in the community in managing epilepsy risk at a time when we do have knowledge to act. 

It reminds me of the first hurdle Epilepsy Bereaved had to jump - that people in all countries believed a myth that people did not die from epilepsy.  At the time, one of my props for getting through the day after my partner’s death was an occasional session with a wise GP who practiced acupuncture; she said remember that banging on closed doors can make you very tired, focus on the doors that are open. It took a long time to find the open doors to dispel that myth, but it was a pretty hefty hurdle to overcome. This hurdle has disappeared into the distance in almost all places.

Today there are so many more open doors that want to work with us on risk reduction and prevention of deaths. It is a very hopeful time with huge opportunities to change hearts and minds and make things a bit better for people.  So please support our call for unity as together we can be stronger.  There is a lot that people can do to help. 
Because of you we at least have some of the solutions. They are out there in the epilepsy community, helping to make change and reduce risks now. 

We bring EpSMon to the table as a solution to help overcome resistance to talking about risk. EpSMon has won a challenge set up by international epilepsy experts for a solution to help tackle risk with a view to preventing sudden death. This combination of research and technology coming together as a way to overcome stigma and open up communication about epilepsy and its risks was unthinkable even just 5 years ago! We also bring the SUDEP and Seizure Safety Checklist to help professionals whose door is already open, providing them with a tool to help start, and continue to have the crucial conversations about risks with their patients; looking at their condition holistically and putting them at the centre of the conversation.

Knowledge about monitors is less developed, so exciting news for all those who have supported the WADD apnoea monitor appeal to fund a clinical trial. Watch this space - We are close to the fundraising target now, and one of the two hefty approval processes has been tackled – with ethical approval as a hurdle to be jumped next!   

We also continue to support the Neurological Alliance to fight for Neurology to be included in NHS corporate priorities. It is a difficult fight and the public finances mean that the door is just beginning to open at a national level. We met with NHS England at the start of the year and pushed this case for improved Neurological services, and we continue to help where we can. 

We do urgently need funds to maintain and develop this work as well as the services we provide to families after a death; your support is invaluable in helping us achieve our ambitions on behalf of the bereaved community. Thank you again to all the donors and fundraisers that make all this work possible.