Sandra McLellan (Cork East, Sinn Fein) | Oireachtas source

I welcome the witnesses and thank them for their presentations and submissions to this committee. I read through the submissions last night but it is important that we hear the real-life stories, because this is about real people in real situations.

A number of issues struck me, the first being the fact that when the disease is diagnosed in a family, it has an enormous knock-on effect down through the generations. It can affect families into the future in the context of securing mortgages and work and can change a family's whole lifestyle. I note that most of those who are diagnosed with the disease are cared for at home by family members. However, when it reaches a point at which the person needs to move into full-time care, there seems to be a real difficulty. In one of the stories, the wife of a sufferer was given a list of 40 nursing homes but only four of those could actually take a person with his particular care needs. That does not leave people with a whole pile of options.

I also noted the point made in one of the presentations today that patients in Ireland can be admitted to psychiatric hospitals due to being refused by other long-term care facilities. What are the reasons for that, other than a shortage of funding? Are the staff in psychiatric hospitals trained to provide for the other specific care needs of people with this disease?

Reference was made to clinical trials and the fact that 1,200 people are going to Europe to take part. We do not have anyone from Ireland going, nor do we have any special care units here. Is there any particular reason why Irish patients cannot participate in the trials? The witnesses made comparisons with Scotland, which has a similar population size. The Scots have seven dedicated HD clinics and nine HD specialist centres. The Scottish Huntington's Disease Association has a staff complement of 30, in comparison with 1.5 here. Is it the case that there are thousands of families in Scotland with Huntington's disease? Why are we so far behind?