Epilepsy Action exists to improve the lives of everyone affected by epilepsy. To do this we must ensure that all people with epilepsy have specialist healthcare and access to effective treatment for their condition.
As part of our commitment to you, Epilepsy Action has launched a new project to look more closely at epilepsy related deaths. We know that it’s a difficult and sensitive subject, which is why we want to make people aware of the facts. We believe that there are ways to help people to discuss the risks in an open and informed way.
This work has been made possible by bereaved families and friends. They shared their personal experiences of losing a loved one, because they wanted to help others. But too many, told us that they were never made aware of the risks of epilepsy related death. This compelled us to look at what more we can do.
We are also extremely grateful to the Octavia Morris Memorial Fund. Our new project is only possible due to a generous grant from this fund.
Epilepsy related death is a difficult topic for people, families and health professionals to talk about. But it’s an important topic that cannot be ignored. Sadly 973 deaths from epilepsy were recorded in England and Wales in 2013[i]. This figure includes people who died from sudden unexpected death in epilepsy (SUDEP), and people who did not recover from status epilepticus (thankfully with timely and effective treatment, the majority of people experiencing status epilepticus survive). More deaths may have occurred due to injuries sustained during a seizure-related accident. SUDEP Action launched The Epilepsy Deaths Register in 2013. We all hope that the register will give us more accurate information about the number and exact causes of epilepsy related deaths.
What does the work 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 other health professionals. This should lead to improved best practice when discussing the risks with people and their families. And inform future work into epilepsy related deaths by ourselves and others.
What do we hope to achieve?
Epilepsy Action launched this work to:
- Improve the information and advice about the risk of epilepsy related death given to people with epilepsy and their families
- Develop best practice principles and resources to support healthcare professionals to confidently discuss epilepsy related death with their patients
- Raise awareness of the importance of good seizure control, getting the right treatment and minimising risks to safety
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. Only 13 per cent of people who completed an Epilepsy Action survey in 2012[ii], could remember receiving information about epilepsy related death from their health professional. In addition, a study published in 2006[iii] suggested that more than two thirds of neurologists failed to discuss epilepsy related death with all, or the majority, of their patients.
Our first task was to gain a better understanding of the views, opinions and experiences of health professionals in relation to epilepsy related deaths. We did this by speaking to small groups of neurologists, epilepsy specialist and epilepsy specialist nurses.
From our discussions we were told 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
We are pleased to announce that Dr Susan Duncan will lead a team who will review all of the studies and research completed around epilepsy related deaths. Dr Duncan has previously completed other studies into epilepsy related deaths. Some of our members will know Dr Duncan because she is a past trustee of Epilepsy Action. Dr Duncan will work with Professor Malcolm MacLeod, Dr Richard Chin and Dr Alis Orr.
“Having looked at your briefing document we are under no illusions that the task isn’t a large one. Which is why I am very pleased that my colleagues, Malcolm MacLeod and Richard Chin, are so enthusiastic and committed to the project. More importantly they have offered their time free of charge. This is in recognition of the importance of this topic and the contribution Epilepsy Action makes in helping us care for our patients with epilepsy.” – Dr Susan Duncan.
We have decided that completing a review of all the available research is a priority. This is because 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.
Dr Duncan and the team will look at all the available research. They will then use it to answer 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. We would like our readers to know that each team who responded, agreed that the project was very important and volunteered to fund part of the research themselves.
How you can find out more about this work
We will keep you updated in future editions of Epilepsy Today, Epilepsy Today Online and web page. Please email any further questions about this work to firstname.lastname@example.org
[i] Office for National Statistics (2014) Death Registrations Summary Tables, England and Wales, 2013
[ii] Epilepsy Action (2013) A Critical Time: for epilepsy in England.
[iii] Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell? Journal of Neurology Neurosurgery & Psychiatry 2006;77:199–202.