Peer support and voluntary groups

Some of the young people interviewed told us that they definitely would not want to join a support group because they thought it would be depressing, or because they preferred to spend time with friends of their own age. A woman with endometriosis told us that she 'doesn't do support groups' though recognised that they might be useful for some people. A young man with ME said that he had mixed feeling about support groups - they might be a good way to find out how other people managed their health issues but if people spent their time complaining it would be too negative. His father attended a group because he was hoping to hear of a miracle cure.

Has not wanted to attend a support group. Really appreciated the care given by a trainee at the hospital and her GP.

Knew very little about epilepsy. It is reassuring to meet other young people who have coped with the condition and says it can be hard to accept information from adults.

Those who had joined support groups said that they had been reassured to find out that they were not alone and that through hearing other people's ideas they were able to think about what might work for themselves. Groups could also be a place to not only learn about how to cope with the condition but also to meet other people in the same boat.

Has enjoyed taking part in Kick Asthma which provides information and runs holidays for children - which can also be helpful to parents who need a break.

Her sickle cell support group has an adult and a youth section. They learn about the disease and she gains reassurance from how normal everyone in the group is.

Voluntary organisations sometimes run workshops, holiday clubs, camps or summer schools for young people. These were often a great place to meet other young people and gain confidence. However a woman with arthritis told us that she had felt sad for children who were severely affected who could not join the others in running around. She concluded that it would be better to mix groups so that not everyone had the same illness.

It was a massive confidence boost to attend a conference weekend for young people with ME.

Enjoyed meeting people but felt sad for children who could not join in with active play at a juvenile arthritis event. Has contributed to a hospital consultation to improve care.

We talked to some people who had taken part in workshops for 12-18 year old's run by the Expert Patient Programme, who described the activities and possible benefits of the workshops, which are intended for any young person with a 'long term condition'. The Expert Patient Programme has a separate website for your people www.staying-positive.co.uk.

Thinks that workshops with other young people are the best way to gain confidence and learn about your illness.