About the project
Premature death in people with epilepsy is higher than in the general population. Around 1,000 people in the UK die earlier than expected. Some of these deaths could be prevented.
Epilepsy Action is working on a project to ensure that people with epilepsy understand the risk of epilepsy-related death. Epilepsy Action believes that it is very important for people with epilepsy and their families to understand the risks associated with epilepsy. Knowing about the risks can help you to make decisions about your epilepsy treatment and your lifestyle.
Current guidance for healthcare professionals says that people with epilepsy and their families should be told about the risk of epilepsy-related death. Healthcare professionals should also explain what can be done to reduce this risk. The project will build on recent research, and involve various organisations and healthcare professionals working together.
We have appointed an epilepsy specialist, Dr Heather Angus-Leppan, consultant neurologist, to lead the project. Dr Angus-Leppan will create a suite of resources for healthcare professionals and patients. These resources aim to help and guide discussions around the risk of epilepsy-related death. We hope the project will improve the way that people with epilepsy and their families are told about epilepsy-related death. Finding out about the risks can be scary and very worrying. The new resources will also support people to deal with the emotional impact of hearing this sort of information.
Dr Angus-Leppan will develop best practice guidance for healthcare professionals, and encourage them to use it. The guidance will support them in pinpointing when particular risks should be discussed with individual patients. The project will also encourage healthcare professionals to help people with epilepsy access support such as self-management programmes, local support groups and mental health services.
As this project progresses, we will continue working with other organisations and stakeholders. Overall this project aims to improve the life expectancy of people with epilepsy and limit the risk of epilepsy-related death.
The project team
- Dr Heather Angus-Leppan, Consultant neurologist, Royal Free, London, UK
- Angie Pullen, Epilepsy Services Manager, Epilepsy Action
- Amanda Stoneman, Research and evaluation officer, Epilepsy Action
Meetings and events
Here are the events that are planned so far. This list will be expanded as the project develops.
|5 April 2019||Launch of the Epilepsy-related deaths survey|
|4 July 2019||1st Stakeholder meeting, London|
|3 October 2019||2nd Stakeholder meeting, Birmingham|
|29 November 2019||Final event|
Dr Angus-Leppan will be developing guidelines for healthcare professionals and we would be very grateful for your help. Please tell us what you think good practice should look like, by completing this survey: Epilepsy-related deaths survey.