SUDEP Action

Making every epilepsy death count
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Countdown to the Big Conversation

Only two months into 2016 and this year is shaping up to be one of the busiest in the charity’s history, with so many exciting developments in the pipeline, there just isn’t space to mention them all here just yet, but I look forward to sharing them with you over the coming months. 

As you know, our National Conference is on the horizon, with many of you down to attend; we really look forward to seeing many familiar faces and welcoming new ones to the club that no one wants to join but one that shares your loss.  

Our guiding principle is ensuring that through SUDEP Action, the bereaved families are a powerful force for setting and delivering prevention priorities. We also believe in walking alongside you in your journey, recognising that the aftermath of epilepsy-related death is traumatic for many, and that many of you will need specialist support at some time. Our generic counsellors Tracy and Karen are always there for you and are trained to focus on what it is you need on your journey to help you keep yourself safe. 

You may know that we are unique in having a policy that half of our Board must have experience of epilepsy-related death.  You may not know that four out of our ten staff also share this experience including myself as CEO. Our daily work is driven from the heart; our unique knowledge of the cause and our extensive network of champions and organisations. 

So what is next for our cause?  We have the largest data on the experiences of bereaved families in the UK and the world now in our Epilepsy Deaths Register – thank you to the amazing effort of everyone so far in bringing us to over 500 registrations now. Most sudden deaths are not witnessed and in too many deaths we know there is no or little contact with any specialist centre in the year before death. If you know of anyone who has not yet registered, please ask them to consider this as the more registrations there are, the more powerful this resource becomes. We treasure all the information you provide us. The EDR is supported by SUDEP Action services and is offered to researchers as the single-point of recruitment for families as well as ensuring our voice has real credibility as the voice of the bereaved.   

I was thinking as I write about the last Parliamentary debate on Epilepsy when many of you boldly lobbied your MPs, shared your stories and made sure your voices were heard. Norman Lamb MP, who was at that time the Minister of State for the Department of Health summed up the debate by saying we owe it to those who have died to:

"do everything we can to improve the experiences of people with epilepsy, and to avoid the tragedies of that sort happening. It is important to raise awareness, not only among the public but among clinicians, of the condition and how best to respond to it.”

I met with Norman Lamb three weeks ago when he invited NHS England to work with us. Apart from discussing The Epilepsy Deaths Register, we spoke in the meeting about the way that technology can support clinicians and patients manage risk. We hope in the near future that research funding will be available for a computerised GP screening tool that builds on the SUDEP and Seizure Safety Checklist, but for now it is a support tool that has been welcomed around the UK.

Since we made EpSMon (the digital version of the SUDEP and Seizure Safety Checklist) free, we have seen a huge increase in people downloading the App. We are so encouraged that these two safety tools have already won a national prize from UK clinicians in September and were shortlisted for not just one but the two most prestigious UK health awards for enhanced patient safety.  We anticipate huge take up once the android version of the App is launched – watch this space! 

These safety tools are only possible because of the evidence on mortality that has been built up in spite of the taboo and exclusion of this issue since 1995 when we founded. Last year we saw more than 150 articles published on epilepsy mortality – that is an amazing legacy. Without you all we seriously doubt the research outputs would be where they are today.

And it is the legacies of our loved ones that we still strive to achieve our goals for, and in their memories that we continue to fight for change, to ensure they are neither forgotten or that their loss goes unnoticed. 

I reflect on this event from over a year ago for a reason. In an environment where the pace of developments has increased to a remarkable level, one which I have not seen for some years, it is time for all of us to take a moment and take stock of where we have been, what we have already accomplished together and most importantly where we are headed as a united voice on behalf of our loved ones. 

So I ask you, in the lead up to our National Conference, whether you are able to attend or will be supporting us from afar; what do you want your legacy and the legacy of those you fight for to be? But not only this. It is important to also think on who will cherish this legacy and support you throughout the whole, sometimes arduous journey ahead? 

Our voice has always been your voice. This is something that will never change. And we hope that in the lead up to the National Conference and in the weeks following it, you will join us in helping shape the next chapter of SUDEP Action by being part of the ‘Big Conversation’, from wherever you are. 

For those attending our weekend we look forward to not only telling you but involving you in how we spend your funds. The funding we receive is precious.   We have always targeted our work in areas that no one else is working.  We are innovative – never wasting funds knowingly on work or services run by other organisations.  

I am excited that soon we’ll be able to share with you more information about the intrinsic role our families can play in this conversation, and I truly hope that we can count on your input and support so that we can make your voice even stronger still!