SUDEP Action Day

About SUDEP

Sudden unexpected death in epilepsy (SUDEP) is the unexpected death of a person with epilepsy, who was otherwise healthy, and for whom no other cause of death can be found. It is a rare, but devastating, outcome for approximately 500-600 people in the UK each year. Many of these deaths are almost certainly preventable; we just need more research and awareness to achieve this.

The biological mechanisms of SUDEP are still not clear, but most of the deaths are thought to be caused by a severe convulsive seizure affecting vital functions such as breathing and heart rhythm. Once scientists understand the precise events that take place during SUDEP, they will be able to focus on the development of preventative therapies.

Research is also looking for the presence of traits (known as risk factors) that identify people with epilepsy who are at particular risk of SUDEP. Knowing who is most susceptible will hopefully allow their doctors and families to take extra precautionary measures to keep them safe.

SUDEP Action Day was launched by SUDEP Action to raise awareness about SUDEP, its risk factors and to highlight the need for more research into this tragic event.

I strongly support awareness being made of the harm which can result from seizures. Anything that can reduce a risk, no matter how small, is to be welcomed: proper information reduces anxiety, and allows patients to take steps to increase their own safety, empowering them and their families in all aspects of their care.Professor John Paul Leach, University of Glasgow Medical School

Factors that are thought to increase a person’s risk of SUDEP include:

  • Early age of epilepsy onset (before 16 years of age)
  • Having uncontrolled seizures, particularly generalised tonic-clonic seizures
  • Missing doses of epilepsy medication
  • Being a young adult (in particular male)
  • Having seizures at night or when alone

You can find out more information about SUDEP Awareness Day and about managing the risk of SUDEP here.

What is Epilepsy Research UK doing to overcome SUDEP?

Research

We are currently funding two studies into the causes of SUDEP and potential risk factors for SUDEP and other epilepsy-associated deaths. We hope that the findings from these investigations will give scientists vital knowledge of why SUDEP happens, and that in the long term they will contribute to the prevention of all types of epilepsy-related death. You can read more about this work below.

Why does SUDEP happen and can it be prevented?

Professor John Jefferys“SUDEP is a devastating outcome of epilepsy. The more we understand about its underlying mechanisms, the more likely we are to be able to prevent it in the future.” Professor John Jefferys

 Professor Jefferys and colleagues, at the University of Oxford, along with collaborating researchers in the UK and the USA, are investigating how breathing and heart function are affected by seizures and other changes in brain waves related to epilepsy, and how this might lead to SUDEP. Professor Jefferys’ research will provide direct evidence on likely causes of SUDEP and may help in the identification of preventative strategies. You can read more about this project here.

Risk factors for deaths in adults with epilepsy

Dr Susan Duncan“This study will give us a much better understanding of the risk factors for epilepsy-related death. We also hope that it will highlight changes in epilepsy care that might help to avoid some of these deaths.”  Dr Susan Duncan 

Dr Susan Duncan, at the Western General Hospital Edinburgh and Muir Maxwell Epilepsy Centre, is looking at the risk factors for deaths in adults with epilepsy. The study will provide accurate estimates of the frequency, causes and risk factors for deaths in adults with epilepsy. Dr Duncan hopes to identify factors which could be modified or prevented through improvements in epilepsy care, and anticipates that the results of this study could lead to improvements in care – and fewer deaths – within 3 to 5 years. To read more about this, click here.

Identifying people who are at risk of SUDEP

This pilot study, led by Dr Robert Delamont at King’s College London, is exploring whether the presence of a certain EEG trait means that people are more at risk of SUDEP. If this is found to be the case, in the future those who are most susceptible to SUDEP and would benefit from extra monitoring could potentially be identified early on. Click here to read more.

Improving our understanding of the changes seen in seizures, by studying seizures as they occur is a vital step in this process of understanding the contributions that changes to heart and lung function, breathing and blood pressure make to causing sudden death.” Dr Robert Delamont

International Expert Workshop

We held an international expert workshop entitled SUDEP: time for prevention, at St Anne’s College in Oxford in 2014. This two-day event, chaired by Dr Lina Nashef and Professor Mark Richardson from King’s College London, brought together eminent researchers and clinicians from around the world to discuss the very latest evidence surrounding SUDEP and the direction of future research. The main themes of the workshop were: people most at risk; the role of genes; the effectiveness of current interventions (medical and non-medical (e.g. seizure alarms)); how and when people should be informed about SUDEP, and the impact that SUDEP has on both families and physicians.

The meeting generated many fruitful discussions, and we already know of three international collaborations that have been forged as a result. Again, we hope that this will lead to an increased understanding of SUDEP, and ultimately to more effective ways of preventing it.

The proceedings of our SUDEP workshop are published in the journal, Epilepsia. To request a copy, please contact us at info@eruk.org.uk, or on 020 8747 5024.

Tonic-clonic seizure alarm survey

Seizure alarms are designed to sense when an epileptic seizure (usually a tonic-clonic seizure) is taking place and alert family/carers/nursing staff, who can then provide the appropriate assistance. They are not perfect solutions, but some people find them reassuring, particularly if seizures are uncontrolled and/or they occur at night.

There are a number of different types of seizure alarm available in the UK, but there is a lack of impartial information about them, which can make choosing one difficult. In June-September 2015 we tried to address this through an online supporter survey. Our aim was to capture the experiences of a large number of people who have used tonic-clonic seizure alarms, and produce an unbiased document to help people in their choices. You can read our findings here.

“Whilst for some it is very rare and may seem unimaginable, SUDEP touches on all aspects of epilepsy care. The work of SUDEP awareness has led to improvement in all aspects of epilepsy care. From the scientific, in understanding mechanisms of the impact of seizures on breathing and the heart, through clinical work ensuring best treatment for all to reduce risk, to the doctor patient relationship challenging how doctors communicate risk. Being aware of SUDEP risk arises from a knowledgeable clinician producing an informed patient or family.” Professor Mike Kerr, Professor of Learning Disability Psychiatry and Honorary Consultant Neuropsychiatrist at Cardiff University

“SUDEP Action is there to educate about SUDEP and offer support to the bereaved but they also do even more than this in that they are there to help professionals reflect on practice when   someone we provided a service to dies expectantly.”  Tracey Ann Truscott, Head of Adult Epilepsy Nursing Service, Kent Community Health NHS Trust

Further information

For further information about SUDEP Action Day or about managing risk of SUDEP click here.

For further reading on recent research findings about SUDEP follow the links below:

Many of Epilepsy Research UK’s supporters fundraise to support our research to honour the memory of a family member or friend. You can read some of their inspirational stories below:

David Scourse died of SUDEP when he was just 23 – approximately six years after he was diagnosed with epilepsy. His parents, Richard and Heather, tell David’s story here.

Tom ‘Moose’ Moulton died unexpectedly in July 2015 age 29, having lived with epilepsy since he was 10. His mother, Lee Moulton, and friend and colleague, Mike Bromfield, talk about Tom’s life and the enormous positive impact he had on all those who knew him here.

Philippa Miller tells how the loss of her best friend Lara Weston to epilepsy, inspired her to fundraise for research.

Video links: Lucy McGuire talks about her preparations for the 2014 London Marathon in memory of her sister, Joanne. The reason I run

Lorraine Hughes-Gage dedicated her 60th year to raise money for research in memory of her daughter, Lucy Jane Brooks. Here she recalls some of the highlights of the year.

Watch Geoff Mayne’s tandem skydive in memory of his daughter Zoë

The family of Lee Johnson have supported the provision of a specialist video telemetry equipment for the Lee Johnson Suite at Leeds General Infirmary.

Some people who have lost a relative or friend to epilepsy have set up memorial funds with us to remember their loved one in a positive way and support research to benefit others living with epilepsy in the UK today. If you would like more information about our memorial funds, email Shona or call 020 8747 5024.