Stephen and I are writing on behalf of the charity at an important moment in the history of the organisation since the charity was first registered in 1995.
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.
Thankfully there is no change to our name, trustees, staff or our bank account number. From April 1st SUDEP Action will be the legal name of the charity and Epilepsy Bereaved (founded in 1995) will be incorporated as part of SUDEP Action. If you search now for either SUDEP Action or Epilepsy Bereaved they will appear as the same new charity number (1164250) and there will be one annual report for both organisations. You can continue to find all our annual reports up to 2016 on the SUDEP action website https://sudep.org/where-your-money-goes.
You do not need to do anything. Supporters who have generously included a legacy to the charity in their will can be reassured that lawyers can easily locate the charity.
We do wish to take this opportunity to thank you for your continuing support which is as vital as ever. Last year we helped 14,000 people, more than double than in 2006. Clinicians and families feeding back to us through the charity and the epilepsy deaths register tell us our services are a life-line uniquely combining face to face services and innovative technologies to support families and clinicians manage risk and support to families in the aftermath of trauma.
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. This is a pressing priority for the charity at a time when health and social care needs are under increasing demand and people with epilepsy and clinicians need some individual `pester’ power to be heard.
We are looking forward to seeing as many of you as possible at our memorial service in May and our national conference in June. Dr Esther Rodriguez Villegas , the engineer from Imperial college who invented the WADD will be a key note speaker at the first world conference on epilepsy and technology in July 2017 and we are thrilled that she has chosen to address our supporters first in June about wearables aimed at preventing SUDEP. Other speakers include Professor Mike Kerr, Professor Henry Smithson and Dr Craig Newman. All these speakers will be talking about SUDEP Action projects – the safety tools and the Epilepsy Deaths Register, reflecting the incredible legacy of work and hope that the charity has built up since 1995. Most importantly there will be time to meet and be with other families.
We continue to have a reputation for punching above our weight reflecting the courage of supporters, staff and trustees and driven by the expertise and experience of our organisation. The Epilepsy deaths register, our supported confidential web platform means SUDEP Action can speak with authority and the experiences of the bereaved always matter. This informs the development of our bespoke specialist service which has both supported and enabled families in their journey after a death.
The staff are always here 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".
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. Whilst UK research funders have been slow to catch on to the priorities of bereaved families, our pump-priming has enabled researchers we work with to secure major investment. We have some very hopeful news which we can’t wait to share with you as soon as we are able to.
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 your ongoing support. During 2017 we will be asking for help. Apart from much needed funds we are planning an awareness event for MPs at Westminster to publicise the work we do with your support in their constituency. Government officials are likely to be focused on the future of the UK and managers of the NHS on the funding and staffing of the health system. This means that the work we do to help families in the community is more meaningful and urgent than ever.
We look forward to speaking to as many of our supporters over the next few months as possible, to personally discuss our plans.