Dr Heather Angus-Leppan explores the efforts to help reduce epilepsy-related deaths in the UK.
About 1,000 people a year die in the United Kingdom because of epilepsy. These deaths are tragedies for the person, for their families, their loved ones and for the whole community. Many happen in young people who had their whole life ahead of them. Many of these deaths could be stopped with better education and care. And above all, the things needed to prevent deaths will make daily life better and richer for people with epilepsy. For example understanding your epilepsy, taking your epilepsy tablets regularly, sleeping well and having good sleep patterns improves life in general as well as epilepsy control.
This coming year, Epilepsy Action is working on a project to make sure that people understand the risk of death from epilepsy. We’re also working to inform them what they can do to be safer. Despite a lot of excellent research the problem remains and it is time to do more about it. I have led this project along with colleagues from Epilepsy Action.
Do people talk about deaths from epilepsy?
The answer is still not enough. Our survey shows this, as do previous ones. Many families who have lost a loved one feel they and the person who died didn’t have enough information about the risks. Knowledge is power.
We can’t prevent all deaths from epilepsy, but many are caused when people take unnecessary risks. Sometimes people don’t realise how important it is to take their epilepsy medicines, avoid triggers and avoid dangerous situations. For example, having a bath could be dangerous, so it’s safer to have a shower instead.
People talk about the risks of other conditions such as heart disease or asthma, so we can learn to be open about risk in epilepsy. Skills and training are sometimes lacking, as doctors and nurses may struggle with the best way to talk about this.
Sometimes the person has been told at their appointment that they have epilepsy and they can’t drive. It can then seem “too much” to add the fact that seizures are dangerous and you can die during a seizure. Our findings this year suggest part of the solution is to talk about the problem from a different angle.
Seeing the problem in a different way
A lot of the research on this topic has been about SUDEP (sudden unexpected death from epilepsy). There is still more research needed to understand why people can die during a seizure.
However, many of the deaths from epilepsy can be explained. Sometimes the cause of a death is quite clear, for example by drowning. It is time to do more about the things that we can solve now. If we focus on living better and living more safely, we can reduce the risks and also improve people’s quality of life.
Many of the deaths have warning signs. Perhaps the person’s seizures have been getting worse and they haven’t seen their doctors or nurses. Maybe they are struggling with mental health problems or there are lifestyle changes. These include not sleeping or drinking more alcohol, or they’re not able to get their epilepsy medicines, or remember to take them on time.
What have we done this year?
Survey: We have completed a survey of people with epilepsy, as well as their family, carers and health professionals. This has helped with ideas about the timing of information about epilepsy-related deaths including SUDEP, and what is missing from current support available. Thank you to all of you who took the time and trouble to take part in this survey. It’s given us a basis for developing appropriate guidelines and resources for the future.
Meeting: In July 2019 we met with people with epilepsy and epilepsy professionals. We explored the goals we can finish soon, and those which will take longer. We learned and gained insight from places where there is excellent care for people with epilepsy.
Guidelines and training for professionals: These will teach nurses and doctors how to talk about epilepsyrelated deaths. They’ll be guided on how and when to start these conversations, and how to help people with epilepsy live more safely. This training will help reduce the risk of epilepsy-related deaths. We are also setting up flexible teaching sessions – some nurses and doctors prefer online learning and some prefer face-to-face sessions.
Guidelines on epilepsy medicines: Missing a dose or running out of epilepsy medicines is an important but avoidable problem that people tell us about. It is hugely stressful if someone is running out of their epilepsy medicine and doesn’t know how to get it. People are often unclear about what to do if they miss a dose, and sometimes this includes the doctors and nurses. We are working on guidelines for individual plans which people with epilepsy will carry. This means they will know what to do if they miss a dose or are unexpectedly running low on their epilepsy medicine. No one would think it is okay for someone with diabetes to miss a dose of insulin. In the same way, no one with epilepsy should be left without their regular medication.
Guidance on mental health: Mental health issues are common in all of us, and even more common in people with epilepsy. Talking about this is a first stage to getting support and seeing improvements. We are working on guidance to help with this, and we’ll incorporate a checklist to alert doctors and nurses of the signs to look out for.
Guidance on drugs and alcohol: Life stresses and mental health problems may cause people with epilepsy to misuse alcohol and recreational drugs, to lose hope and to neglect self-care. Advice and contact with support services is essential and we are preparing a webpage to flag what support is out there.
Educational YouTube videos: We have put together scripts for brief videos on hot topics, including talking about epilepsyrelated deaths, what to do if someone has a seizure and what to do if they run out of epilepsy medicine. This is a particularly challenging part of the project. The aim is to reach people who are more at home with social media than they are reading booklets and advice sheets.
Goals for the future
Social change: Poverty is strongly linked to severe epilepsy. That doesn’t mean that people who have severe epilepsy live in poverty, but it does mean that if you are poor the effects of the epilepsy will be even worse. Stresses about PIP and benefits are a major source of worry for some people with epilepsy. These stresses can make people unwell and less able to deal with their health needs. Real change in the long-term is needed to help tackle these problems.
Better joined-up patient records for all to see: We need better patient and medication records, so that GPs, hospital nurses and doctors and the person with epilepsy can all see them easily. This improves communication and allows problems to be dealt with quickly and efficiently. Worries about confidentiality have been a barrier, but these can be overcome. Other countries do this and we could too.
Monitoring this issue
In Scotland and Wales, government systems allow us to track what is happening with the numbers of people dying from epilepsy, including how and why. This is lacking in England, and is important in monitoring and analysing progress. This is going to take some time to fix.
People with epilepsy and their carers are doing much to educate people and raise awareness of the risks of epilepsy. Together with Epilepsy Action, we are striving to achieve this and so much more.
For more information on epilepsy-related deaths, please visit our page on SUDEP.
For more information and guidance call the Epilepsy Action Helpline on 0808 800 5050.
Dr Heather Angus-Leppan, Lead, Epilepsy-related deaths project for Epilepsy Action
This research project is in response to another research project which may provide you with further background information: Epilepsy-related and other causes of mortality in people with epilepsy: A systematic review of systematic reviews Gashirai K. Mbizvoa, Kyle Bennett, Colin R. Simpson, Susan E. Duncan, Richard F.M. Chin, Epilepsy Research issue 157 (2019) 106192