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2018 - Present
Epilepsy Bereaved becomes part of SUDEP Action – 2017

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.

The Journey to SUDEP Action – what's in a name?

The change of name to SUDEP Action is a powerful moment in our story. The change of name is in recognition that the SUDEP landscape has changed. There is so much to do and this is the time to take the name.

We chose SUDEP Action because it is this charity that worked with researchers to come up with the definition of SUDEP, and is a global leader on it. So after a series of in depth interviews with supporters, and stakeholders, plus the backing of staff and trustees, the charity decided to become SUDEP Action.

Our strap line – making every epilepsy death count is because we are just as concerned about the death of someone who has died from status epilepticus, an accident or a suicide as someone who has died from SUDEP. We need to have SUDEP in our name because SUDEP is the least understood.

The logo has changed to five people holding arms. It represents the five women who started the charity and today all the people who are supporting the charity. It also represents the five arms of our work. The new name coincides with the unveiling of a new, more accessible and informative website and an epilepsy deaths research register. The Epilepsy Deaths register aims to collate data on epilepsy deaths from across the UK.

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.

The SUDEP Global Conversation – 2005 to 2013

By 2011, Epilepsy Bereaved, Epilepsy Australia and SUDEP Aware (Canada) had established a three way partnership. SUDEP – Continuing the Global Conversation was published in 2011 and launched at the International Epilepsy Congress in Rome with the backing of the International Bureau for Epilepsy and the International League against Epilepsy.

Close working relationships were developed as organisations around the world focused on SUDEP. These included Brainwave, Epilepsy Australia and SUDEP Aware; USA SUDEP Coalition (American Epilepsy Society, Citizens United for Research in Epilepsy (CURE)). Others included the Epilepsy Foundation and the National Institute of Neurological Disorders and Stroke (NINDS).

As SUDEP awareness heightened in North America, the NINDS convened the first national workshop on SUDEP. Jane was invited alongside SUDEP specialists Professor Torbjorn Tomson, Dr Lina Nashef and Dr Panelli as an international expert at the workshop. Jane contributed a chapter in the handbook Sudden Death in Epilepsy – Forensic and Clinical Issues 2011.

In 2012, Jane was invited to give the key-note address at the three-day Partners Against Mortality in Epilepsy (PAME) conference in Chicago. Her speech prompted organisers Jeff Buchhalter and Gardiner Lapham to say: “Your personal efforts and those of Epilepsy Bereaved have provided inspiration for those of us in the United States and around the world. Epilepsy Bereaved has demonstrated the importance of advocacy organisations in helping to inform the lay community and professional societies.”

A wake up call to the world – from 2002

The funding for the National Clinical Audit of Epilepsy-Related Deaths followed the International SUDEP workshop in 1995 and a successful campaign to policy makers in England, Northern Ireland, Scotland and Wales. 600 health professionals and 9,000 members of the public supported the campaign which included a petition; written questions, the first ever epilepsy debate in Parliament and meetings with ministers and civil servants. The government commented that the most effective part of the campaign was the involvement of bereaved families, who had written, and in some cases met with their local politicians. Labour MP Stephen Twigg, whose mother died from epilepsy, was so touched by his contact with one bereaved mother that he became the leader of the All Party Group of MPs on Epilepsy and led debates on epilepsy and sudden death.

The National Audit of Epilepsy Deaths brought together a partnership of experts from five Royal Colleges and the International League Against Epilepsy. The inquiry produced the report, “Death in the Shadows”. The report showed the real seriousness of epilepsy and how a focus on epilepsy deaths could help drive service improvements. More importantly, the report found that about 40% of SUDEP deaths could be avoidable. It also found that the investigation of epilepsy-related deaths was poor and hampered progress in learning from the deaths.

All four chief medical officers in the UK described it as a “landmark report” of international significance. “Uniquely in the world, Epilepsy Bereaved has a track record of leading a multidisciplinary partnership across four countries. The audit was a carefully executed piece of work which led to epilepsy policy development including national clinical and pathology guidelines,” Professor Dame Sally Davies, Chief Scientific Advisor, UK government. An editorial by Professor Hauser (US) and Professor Pedley (US) in the Lancet said it was a “wake-up call” to epilepsy management around the world.

The document was powerful in persuading governments as well as facilitating developments in epilepsy research and clinical practice. As a result of the audit, SUDEP became recognised as a syndrome in 2004 by national and local policy makers. SUDEP was also highlighted in health professional journals, in NICE (England and Wales) and SIGN (Scotland) epilepsy guidelines on best practice for health professionals.

The Royal College of Pathologists produced new guidelines on the investigation of epilepsy deaths and worked in partnership with Epilepsy Bereaved on providing training on sudden medical deaths. Epilepsy gained a higher profile on the health agenda. In Wales the government produced their first commissioning directive for epilepsy services to support service developments and governments across four countries funded information on SUDEP and educational workshops as part of their action plans to respond to the audit.

Grabbing international attention on SUDEP

A small steering group including Jane Hanna, Jennifer Preston, Professor Colin Binnie; Dr Edward Reynolds; Dr Stephen Brown; Dr Ley Sander and Dr Lina Nashef attracted the participation of 60 world experts and sponsorship from the pharmaceutical giant Glaxo Wellcome.

Work presented at the conference included a definition of Sudden Unexpected Death in Epilepsy by Dr Nashef which was adopted in the UK national clinical guidelines. It was also used in the development of a uniform international categorisation in 2011. This vital work was only possible because of a close collaboration between Dr Nashef and Epilepsy Bereaved and the involvement of bereaved families.

The outcomes of the international conference were:

    • The first international publication on SUDEP in Epilepsia.

Identified priorities for SUDEP research.

Impetus for research, collaboration and change.

Led to increased research activity on Sudden Unexpected Death in Epilepsy (SUDEP). This included the first large research study to highlight frequent convulsive seizures as the main risk factor for SUDEP.

A successful campaign to governments across the UK to fund a national audit in epilepsy-related deaths to establish what proportion of epilepsy deaths were potentially avoidable.

Epilepsy Bereaved invited bereaved families to a memorial service in 1997. These services continue to this day every two years and have been used as a model in other countries around the world.

The year after the international workshop a parallel session was organised at the International Epilepsy Congress in Dublin (1997) and Jane Hanna was invited to speak alongside researchers. The session attracted a large audience and was the first international meeting of many that followed that included SUDEP.

Epilepsy Bereaved started to develop relationships with epilepsy organisations around the world. A survey with epilepsy organisations in 1995 (reported in Epilepsia) found that SUDEP was generally not included in the work or information of epilepsy organisations. Outreach work by Epilepsy Bereaved since 1995 changed this. Between 1995 and 2005 Epilepsy Bereaved was an invited speaker at international and national events across Europe; Australia and South America.

In 2004 Epilepsy Bereaved was included as a model of good practice in the EUCARE (European Concerted Action on Research in Epilepsy) Project.

Breaking the SUDEP taboo 1992-1995

All these four young people had epilepsy, but not one of them let it hold them back. All four lived happy and active lives, which is why their deaths came as such a shock. How could such healthy young people just die? Why had it happened? Could their deaths have been prevented?

No-one seemed to have any answers. There was nothing in the medical text books we read and even pathologists and coroners could not provide the answers. This left bereaved families feeling devastated and isolated.

Jane decided to speak about Alan dying from epilepsy on the BBC’s investigative programme Watchdog. Catherine saw the show and got in contact with Jane. The breakthrough came in 1992 following an article about Jane and Catherine that appeared in the national Independent and the Guardian newspapers. In the articles Jane and Catherine spoke about their experience of sudden death in epilepsy.

The First News Article on SUDEP in the world.
Their words resonated with Jennifer, Sue and a number of other families who got in touch. They pledged to get a group going to campaign for a better understanding and prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

At the time, SUDEP was not known or recognised except by a handful of researchers around the world. The next few years were spent building relationships with this group and by attending and asking questions at conferences of epilepsy professionals. This was crucial work at a time when sudden death was neither understood nor accepted.

By 1995 the self-help group had developed good working relationships with experts in the medical community. Researchers and families agreed to work together to tackle the overwhelming lack of research and information on epilepsy deaths. This powerful combination continues to this day, but was born from a shared passion rooted in the shared commitment to get answers.

In 1995 five women – Jane, Catherine, Sheila, Sue and Jennifer launched a charity to support families bereaved through epilepsy related death, and to campaign for a better understanding and prevention of SUDEP. They decided to call it Epilepsy Bereaved because at that time very few people would accept that someone could die from epilepsy.

The charity set in place a system for bereavement support. This enabled bereaved families to make contact with other people who had experience of SUDEP. This helped break the sense of isolation, but also provided opportunities for people to assist the work of the charity.

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