Ms Patricia Towey:

A question was asked about linkages with the North. The Huntington's Disease Association in Northern Ireland has two people employed and two specialist nurses. There are some linkages. We had a joint youth group and a youth camp. It is very important to link people in at an early stage, as Dr. Pender noted. Having people connected through youth activities can keep them linked into a service and perhaps eliminate some fear for the future. Dr. Pender mentioned clinics he worked with where families were supported for years, and that is what needs to happen in Ireland, as people are often in denial due to the cognitive aspects of the condition and do not seek the services they need. They can alienate themselves from family members and it is important that they are linked in as soon as possible.

Northern Ireland had some funding to develop youth services and to look at needs in that regard. To compare, however, Scotland has three youth workers in place and the Scottish association has many specialist clinics. I do not necessarily think that there are clusters as such, but there is a remote part of Scotland where there is a higher prevalence of Huntington's disease. There is anecdotal suggestion, as Professor Morrison has mentioned, that people might have moved there from Donegal. A great deal of research on Huntington's came about initially because of clusters in Venezuela, and the gene was found on foot of that.