Around 600,000 people in the UK (1 in 100) have epilepsy. It is recognised that some people with epilepsy experience stigma and discrimination because of the condition. Stigma is when someone views a person in a negative way because they have a particular characteristic that’s thought to be, or actually does, put them at a disadvantage.
Experiencing stigma can have a serious negative impact on a person’s quality of life. 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, in order to:
- Help improve awareness and understanding of epilepsy
- Publicly celebrating positive attitudes towards epilepsy
- Challenging negative attitudes
What did we do?
Epilepsy Action funded a team at Bangor University, to carry out a survey of public attitudes to epilepsy and people with epilepsy in the UK.
3,875 people completed the survey, which asked them to share their views and knowledge about epilepsy, on topics from driving and work to family life and relationships. The responses represented the UK adult population based on age, gender, where they lived, and socio-economic group. The average age was 49 years and just over half were female. Less than half of the UK public knew someone who is living with epilepsy.
The results of the survey show there are some negative attitudes to epilepsy but overall stigma towards epilepsy in the UK appears to be low. The biggest issue was with risk and safety concerns about epilepsy.
Here is a breakdown of the findings:
Risk and safety concerns
This topic looked at attitudes towards driving and looking after children and was the one which most divided opinion. Half of people said they would not let their child ride in a car with a driver who has epilepsy. Almost half said they would feel uncomfortable if their child rode in a car with a driver with epilepsy. And just over a third of people said they would not employ someone with epilepsy to babysit their child.
Personal fear and social avoidance
Stigma was relatively low in this category. People’s responses showed they would not be embarrassed if someone in their family had epilepsy. Most also said they would be happy to work with or date someone with epilepsy. However, a quarter of people said they would be afraid to be alone with someone epilepsy. And just under a quarter said they would be nervous to be around a person with epilepsy in the event of him or her having a seizure.
Work and role expectations
Stigma scored relatively low in this area. Most respondents said they believed people with epilepsy can be as successful as others at work and can lead ‘normal’ lives. However, around a quarter of people said they believe there are many work activities people with epilepsy cannot do safely that others can.
This category scored the lowest for stigma. People were asked questions such as if they thought people with epilepsy were less smart than others, or whether they shouldn’t marry or have children. The results showed most people disagreed with the statements.
We asked 16 questions to test public knowledge of epilepsy. On average, people answered 12 correctly. Most people (nine out of ten) know that you cannot catch epilepsy from someone who has it. Only one in three people knew how many people are living with epilepsy in the UK.
For every 100 adults in the UK surveyed…
- 1 has a very negative attitude to epilepsy
- 10 have a negative attitude to epilepsy
- 59 have a positive attitude to epilepsy
- 30 have a very positive attitude to epilepsy
When we looked at what predicts stigma we found that knowledge about epilepsy is important.
- People, who thought they knew a lot about epilepsy, didn’t always do well in the knowledge test. This tells us that improving knowledge isn’t just about educating those who don’t know, but it is also about dispelling myths and correcting those who got it wrong.
- When we looked at the individual questions, often the people gave an incorrect response to the most commonly known items had the highest stigma. This suggests that increasing the knowledge of this minority may have the greatest impact.
- We found that increasing knowledge may raise risk and safety concerns. Initiatives to improve knowledge should also address these concerns.
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
- Leah Cropper, Epilepsy Action Research Volunteer
- Nigel Bennett, Epilepsy Action Research Volunteer