Epilepsy is the one of the most common serious neurological conditions in the world. It affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy.
It is recognised that some people with epilepsy experience stigma and discrimination because of the condition. Stigma is when someone views you in a negative way because you have a particular characteristic that’s thought to be, or actually does, put you at a disadvantage.
Experiencing stigma can have a serious negative impact on a person’s quality of life. For example, they might:
- Experience a lack of understanding by family, friends, co-workers or other people
- Have fewer opportunities for work, school or social activities
- Believe that they’ll never be able to succeed at certain challenges
It is not yet fully understood how much feelings of stigma are caused by:
- Negative attitudes of the general public towards epilepsy and people with epilepsy and
- People’s own beliefs about what the general public think and know about epilepsy
It is very important for Epilepsy Action to understand any stigma that people with epilepsy may face. This will help us in our work to improve awareness and understanding of epilepsy, publicly celebrating positive attitudes towards epilepsy and challenging negative attitudes.
Our vision is to see all people affected by epilepsy to receive the support they need and the public respect, fairness and understanding they deserve.
Epilepsy Action is proud to be funding a team at Bangor University, to carry out a survey of public attitudes to epilepsy and people with epilepsy in the UK.
This survey will measure the UK public attitude towards epilepsy and people with epilepsy in 2018. They will use a method that can be repeated at future time points, in order to track changing public attitudes over time.
The results from this project will assist Epilepsy Action in planning future work to improve awareness and understanding of epilepsy.
The project team
Bangor University team
- Dr Emily Holmes, Research Fellow in Pharmacoeconomics, Centre for Health Economics and Medicines Evaluation (CHEME), Bangor University
- Catrin Plumpton, Research Fellow in Pharmacoeconomics, CHEME, Bangor University
- Siobhan Bourke, Research Project Support Office, CHEME, Bangor University
Epilepsy Action team
- Angie Pullen, Epilepsy Services Manager
- Amanda Stoneman, Research and Evaluation Officer
- Helen Murray-Sharpe, Local Services Manager
- Sue Mitchell, Communications Manager
- Chantal Spittles, Senior PR and Media Officer
- Stephanie Kilinc, Senior Lecturer in Psychology, Teesside University
- Rachel Shopland, Epilepsy Action Research Volunteer