Long term health conditions

Peer support and support 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/CFS said that he had mixed feelings about support groups - they might be a good way to find out how other people manage their health issues but if people spent their time complaining, it could be too negative. His father attended a group because he was hoping to hear of a 'miracle cure'.

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 live with the condition but also to meet other people in the same boat.

Support 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.

We talked to some people who had taken part in workshops for 12-18 year olds 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'. 

Last reviewed July 2017.

Last updated February 2012.


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