In 2013 bereaved families backed Epilepsy Bereaved adopting SUDEP Action as a working name.
We said then:
“We hope the new name will reach more epilepsy patients, families, medical professionals, policy makers and influencers. By using the acronym SUDEP in our name, we are sending the clearest possible message that we are serious about the issue. We want everyone to know about it; to know that epilepsy can kill and only by raising awareness of risk and carrying out research into SUDEP will we find the answers to the questions posed all those years ago by five bereaved women, who were determined to ensure their loved ones did not die in vain.”
Last year we helped 14,000 people, more than double than in 2006. The charity won 5 major awards in 2016 and has been shortlisted for the British Medical Journal Innovation Award for 2017. Our Safety Tools have been recognised by numerous bodies – academic, patient representative and health –as good practice.
Our new name has helped us get across these vital messages at a time when health and social care needs are under increasing demand and families and clinicians need help. If you are able to attend our national conference in June this year you will hear from Dr Esther Rodriguez Villegas, Professor Mike Kerr, Professor Henry Smithson and Dr Craig Newman about the innovations we have backed as just some of the incredible legacy of work and hope that the charity has built up since 1995.
We are thrilled in 2017 that the charity commission has approved our work over the last 2 years to adopt a new legal structure aimed by government at helping charities like ours to increase their effectiveness without duplication of paperwork. This change will help us develop our work with universities and the NHS to improve patient safety. This is more vital than ever as government is focused on the future of the UK and managers of the NHS on the overall funding and staffing of the health system.
So from April 1st 2017 SUDEP Action becomes the legal name of the charity as registered with the Charity Commission under number 1164250 and Epilepsy Bereaved (founded in 1995) will be incorporated as part of SUDEP Action. You can continue to find all our annual reports at https://sudep.org/where-your-money-goes. Supporters of the charity do not need to do anything as day to day work of the charity remains unchanged.
Our staff remain a constant for families affected by the worst of all news:
"Often, I would contact her, during the night via email, or if any nice things happened; the support and understanding was always there for me. The same person, so she knew all about me! I didn't need to explain, it just continued". "My quest, when I feel more able, is to raise awareness of SUDEP".
Our service and our confidential web platform, The Epilepsy Deaths Register, means we speak with increasing authority and the experiences of the bereaved always matter. We anticipate that in 2017 publicity on epilepsy deaths on the internet and other media will continue to rocket. Advocates like ourselves and Professor Elson So, a world expert on epilepsy mortality who spoke recently to over 4,000 clinicians see this as the long overdue fruits of the seeds sown repeatedly by our community over many years.
In the meantime we know only too well how much more there is to do, but are thankful that we embrace the challenge with the knowledge that we have such courageous supporters, staff and trustees driven by the expertise and experience of our organisation.
We look forward to speaking to as many supporters during 2017 as possible on how they can help.