Epilepsy Action has launched a new project on epilepsy-related death. We know that it’s a difficult and sensitive subject. We must find useful and valuable ways to help people discuss the risks in an open and informed way. We want to make people aware of the facts – but first we must find out what they are.
This project has been made possible by the bereaved families and friends of people with epilepsy. They shared their personal experiences of losing a loved one because they wanted to help others. Unfortunately, many told us that they had never been made aware of the risks of epilepsy-related death. This made us even more determined to look at what we can do to change this.
Our new project is only possible due to a generous grant from the Octavia Morris Memorial Fund (OMMF). We are extremely grateful to John Morris – Octavia’s father – for his involvement and support.
Epilepsy-related death is a difficult topic for individuals, their families and health professionals to talk about. Still, it’s an important topic that cannot be ignored. Sadly, 973 deaths from epilepsy were recorded in England and Wales in 2013.
Some of these people died from sudden unexpected death in epilepsy (SUDEP). Others experienced status epilepticus and did not recover. Some deaths will have occurred due to a seizure-related accident.
One problem with assessing epilepsy-related death is that it is hard to be sure which deaths happened for which reasons. SUDEP Action launched The Epilepsy Deaths Register in 2013. The register will give us more accurate information about the number and exact causes of epilepsy-related deaths.
What does this project involve?
The project has three distinct parts:
- Part one: closely examine the existing research to establish the facts about epilepsy-related deaths and the associated risks
- Part two: use our findings to develop new resources about epilepsy-related death. These resources will help to improve understanding of epilepsy and the risks associated with the condition
- Part three: Deliver the resources to people with epilepsy, friends and families and health professionals. We must make sure that everyone can access these resources at the right time
We will also share our research findings with health professionals. This should lead to improved best practice when discussing the risks with people and their families.
Where we are now
Current guidance states that people with epilepsy and their families should be told about the risk of epilepsy-related death. However, evidence suggests it’s rarely discussed by health professionals.
In order to change that, our first task was to collect the views and experiences of health professionals. We spoke to small groups of neurologists, epilepsy specialists and epilepsy specialist nurses and found that health professionals need:
- Clear evidence of what increases the risk of epilepsy-related death and the best approach to reducing those risks
- Evidence to show what information about epilepsy-related deaths is most important and should be given to everyone with epilepsy and their families
- More time during appointments to actually discuss the risks associated with epilepsy
Too little research funding has been made available to fund large-scale studies into epilepsy-related death in the UK and Europe. As a result, several smaller pieces of research have been conducted by teams around the world. This data now needs to be combined into one big picture.
Dr Susan Duncan will lead a team that will review all of the studies and research completed around epilepsy-related death. Dr Duncan will work with Prof Malcolm MacLeod, Dr Richard Chin and Dr Alis Orr in answering the following three questions:
- What is the incidence of epilepsy-related deaths?
- What are the causes and risk factors?
- Can epilepsy deaths be prevented?
Epilepsy Action would like to thank each team of professionals who expressed an interest in carrying out the review on our behalf. Each team that responded is very committed to the project – and volunteered to fund part of this research.
Find out more
We will keep you updated on the project through future editions of Epilepsy Today or on the campaign webpage For more information about this project, email the campaigns team or call +44 (0)113 210 8899 (UK).
John Morris tells us about his daughter Octavia, how OMMF came about and why the fund selected this project for a major initial investment
OMMF came into being due to the determination of Occy’s legion of friends and family and under the leadership of Mary Westlake. They were all determined that Occy should not have died in vain. Her case history should be a platform for saving the lives of others in her situation, who might learn from her experience.
Octavia was a beautiful girl with an infectious smile, huge energy and fresh thinking. She was loved by all for her spark, wit, originality and intelligence.
With no previous health issues or family history to suggest that she had epilepsy, Occy had just turned 18 and was preparing for A-levels when she experienced her first seizure.
Others followed – first infrequently, but then more regularly. Being the cool, determined, stubborn young lady that she was, she decided early on that epilepsy was not going to affect her life or her lifestyle. The subject was out of bounds for discussion with her family and friends. She lived her life to the full in her beloved Bristol and elsewhere, both during her time at university and after graduation.
Occy steadily forged a career for herself as a freelance journalist and photographer, working for publications including The Observer – The New Review. To this end she often travelled the world unaccompanied, potentially putting her life at risk each time she did so. Taking risks with her condition finally caught up with her. One fatal day – at the age of 27 – she had a seizure while swimming alone and drowned. Occy knew the rules, but she played the game her way. Ultimately, she lost.
That is why this new initiative by Epilepsy Action, OMMF’s chosen charity, is so important. OMMF has elected to use most of the £65,000 raised to date to support Epilepsy Action’s new venture.
OMMF is very much looking at this as Phase l of an ongoing programme designed to raise awareness of the risks associated with epilepsy. We must raise awareness in people living with epilepsy and their friends and families, the doctors and nurses involved in treatment and the general public. We must bring all these associated risks into the open, into the public mind-set in the same way as other illnesses and conditions. This is not the case at present.
I commend the initiative of Epilepsy Action towards this common goal. I urge you to give the charity your maximum support. Help us take the condition firmly out of the realm of stigma. Help us bring it into the public domain. I thank you in advance for your help towards this end.
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