Teenage survey results

Epilepsy Action surveyed 266 young people aged 12-20 with epilepsy to find out how they feel about living with the condition. The survey is believed to be the largest of young people with epilepsy ever carried out.

The main results were:

• Those young people who feel better informed about their epilepsy seem more able to manage the impact it has on their lives. Those who feel well-informed are more likely to be able to discuss their epilepsy with their doctor and understand why they have to take their medication. They feel better supported at school and feel their epilepsy has less of an impact on their school work. They are also more likely to feel comfortable being open about their epilepsy and are less likely to feel excluded because of it.

• A quarter (24 per cent) of young people do not feel they have enough information about their epilepsy.

• Most young people said their teacher knows they have epilepsy (81 per cent) and feel their epilepsy affects their schoolwork (72 per cent). Despite this, less than half (44 per cent) of young people feel their teacher understands what epilepsy is and only a third (39 per cent) feel well-supported at school.

• Encouragingly, most young people feel they can talk to their doctor about their epilepsy (83 per cent) and understand why it is important to take their medication (87 per cent). A third (34 per cent) feel that their doctor tends to speak to their parents instead of them but two-thirds (59 per cent) feel they have been given enough information about their condition.

• Over half (57 per cent) of young people worry about what people will think if they tell them about their epilepsy but two-thirds (65 per cent) feel comfortable telling their friends. A third (34 per cent) of young people feel that people sometimes avoid them because of their epilepsy and half (52 per cent) said they sometimes feel excluded. Half (49 per cent) said that their friend would know what to do if they had a seizure.

• Most young people feel quite strongly that epilepsy is not going to prevent them from doing the things they want to do. They were asked to rate, on a scale of one to 10, how far they agreed with the statement “My epilepsy isn’t going to stand in the way of what I want to do in life” (where ‘10’ indicated the strongest agreement). The response was very positive, with over 60 per cent of respondents giving a rating of seven or above.