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Professor Martin Elliott stresses the importance of research into SUDEP

 

Professor Martin Elliott, Professor of Paediatric Cardiothoracic Surgery at UCL & Medical Director at Great Ormond Street Hospital for Children stressed the importance of further research into Sudden Death in Epilepsy (SUDEP) during his lecture, 'Sudden death in the young: A terrible waste' at the Museum of London on 18th January 2017. 

The lecture was one of a series that the Professor is delivering that focus on both his professional and personal experience of sudden death, having lost his own son Toby to SUDEP seven years ago. Toby was 26 years old at the time of his death and his epilepsy went undiagnosed throughout his life.

During his talk, Professor Elliott highlighted the misunderstood, significant scale of these deaths, the impact they have and what can be done to help prevent them.  

Hidden risk

On his son's death, he commented: "Neither I, nor any of the five professors of medicine who came to his funeral, had ever heard of it.

We are not alone. In 2011, a survey of 2,570 Canadian paediatricians revealed that only 34% of those caring for children with epilepsy had ever heard of the term SUDEP.

In 2002, a national UK audit highlighted SUDEP as ‘deaths in the shadows’, being systematically under-recognized, under-reported, and poorly investigated by health professionals."

While there is limited understanding of what causes SUDEP, there are known risk factors and it is thought that up to 600 young people with epilepsy die in England each year suddenly and often without warning. 

Importance of research

Professor Elliott not only considered the causes and lack of understanding towards SUDEP but also the treatments, research and preventative measures that may be possible. He  suggested that the battle begins with how the investigation of sudden death could be improved to aid research in the future.  

"We need to carry out more qualitative research to understand how potential victims and their families feel about such issues, and recognise that they are partners in care not victims of it.  Interventions must be personalised, but to do that much more data are needed.  Such qualitative research is the hardest to fund.

All these studies highlight the importance of obtaining (and retaining) material from the victims of unexpected sudden death of all types. Science cannot progress without access to such tissue, and thus future deaths may not be prevented as they could be.

As a society, we can and should do more to make the processes surrounding sudden unexpected death as simple, quick, effective and humane as possible.  All opportunities to collect data, relevant biological samples and histories should be taken, and not obstructed. "

Clare Pelham,  Epilepsy Society Chief Executive commented: "Professor Elliot's powerful and moving talk has highlighted the vital importance of bringing the issue of SUDEP to a wider audience. The devastating impact of a sudden death, especially in a young person, cannot be overstated. Future deaths can be prevented. And must be prevented. And this will happen in our lifetimes if we act now. One straight forward step anyone with or without epilepsy could take is to become a brain and tissue donor. To become a donor register with our Brain and Tissue Bank team. By supporting research, we are preventing terrible and unnecessary loss of life in the future."

View the full transcript of Professor Elliott's talk

Talk to someone

If you are concerned about SUDEP, for yourself or for someone else, talk to your neurologist about what any risks mean for you and your situation and how to lower the risk of SUDEP.

To talk about concerns around epilepsy and premature mortality:

Epilepsy Society helpline on 01494 601 400.

Epilepsy deaths are not common but do happen, and while not all deaths are avoidable, some are. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy.

If you have been affected by an epilepsy death please visit www.sudep.org or contact the SUDEP Action support team on 01235 772852.

Our research: Brain and tissue bank

The Epilepsy Society Brain and Tissue Bank is the first of its kind in the UK. It is dedicated to the study of epilepsy, by providing brain and other tissue

Good seizure control can reduce risk, especially for convulsive seizures.

Statistics about risk are helpful but don't show your individual risks. These depend on your epilepsy, lifestyle, other conditions and factors, like age and sex. Reduce your risk

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