Part IV : Discussion

There is no doubt that the camps have met their objectives and must be judged a success. They are appreciated by young people and parents alike and have had no negative outcomes.

The review has highlighted a number of issues. One is the isolation of families with Huntington's Disease. Very few of the young people had others they could or did talk to about the disease. While girls were more likely than boys to talk to their friends about it, they commented that even their best friends did not really understand. Attending the camps not only gave them more information for themselves but also helped them explain their situation to others.

Their pleasure in finding others in similar circumstances was obvious. They described the strong bonds that formed between them because of the particular nature of their shared experience. Parents reinforced the comments young people made and noted that many of the young people kept in touch with other either on a regular basis or when a crisis occurred. The importance of this form of mutual support cannot be underestimated.

The camps gave the young people a sense of specialness which was highlighted by the remarks of two who described themselves as ‘almost lucky’ to have Huntington's Disease in the family so they had the opportunity to attend and to take part in the activities. The comments were a reminder that Huntington's Disease families do not always have the resources to offer children opportunities that may be more freely available to other children.

Both parents and young people appreciated the knowledge the young people gained about the disease. In some cases young people were able to tell parents things they did not know, in others they passed on information to older siblings who had not had the opportunity to attend. Parents appreciated having impartial, trained facilitators teaching their children. They were confident the information given was accurate and believed their children were more willing and able to learn in a supportive and neutral environment.

The children faced the reality of being at risk of the disease with courage and realism. The camps could not change their situation but they did offer information and support and kept young people up to date with the latest research on predictive testing and genetic developments.

The format of the camps needs little modification. More attention could be paid to catering for the older children within the existing format rather than having separate events for older and younger children. The timing and length of discussion groups could also be varied so that there is greater flexibility. The young people acknowledged that the discussions would inevitably cover familiar ground as new people came to the camps. Most were tolerant of this. Possibly more use could be made of their knowledge and experience to create bonds with newcomers.

The overwhelming message of the review was that knowing about Huntington's Disease is better than not knowing and that children as young as nine and eleven can cope with the knowledge and gain support from others in a similar situation. Both parents and young people benefit from the camps. A week a year cannot solve family problems or change the situation families must deal with on a daily basis. The camps cannot transform children or change their personalities. They are a support not a panacea but they are a support that is highly valued by all participants. The last word should go to a brother and sister who have attended all three camps: If they ever stop, we’ll get mad.