Jillian van Turnhout (Independent) | Oireachtas source

I thank the witnesses for their presentations and for the submissions they made in advance of the presentations. I know a family friend who has Huntington's disease. The case studies provided touched on the point raised by Dr. Pender, the fact that one rarely hears about fund-raising or awareness raising outside of the circles where Huntington's disease is present. Therefore, it is important we hear more about the illness because it will give us a greater insight. The case studies are based on real people but we still must hear them. The evidence provided is equally important.

I wish to ask questions on three areas. My first question is on the Huntington's Disease Association of Ireland. I note, from the submission, that the association is comprised of 1.5 full-time staff or whole-time equivalents. Any of us who have read these professional presentations and heard the evidence provided will be surprised by the number of staff. In terms of the number of families who seek support and the importance to raise awareness, where does the association currently get its funding from? Some funding comes from the Department of the Environment, Community and Local Government through the scheme to support national voluntary organisations. I apologise for the fact that the Department keeps changing the name of the scheme, which is an important one for community and voluntary organisations. The funding the association received through the scheme was cut last year and had to be re-instated for a two-year period. Equally, here we have talked about section 38 and section 39 organisations. When we hear the amount of funding provided we will all be shocked that there is not more State funding being spent considering the important work that is done by the organisation. It would be good for us to hear the amount. All too often we hear about large amounts of funding being spent. Unfortunately, the association has nowhere near enough funding and that is an issue we must raise.

When I read the submissions I tried to work out what recommendations the committee should make. During the short break earlier I conducted a small poll on the people in the Visitors Gallery. My understanding is that we should concentrate and co-ordinate our services into, as was suggested to me, Bloomfield Health Services or a multidisciplinary service. I asked people in the Visitors Gallery the question and now I shall ask the witnesses the same question. Normally, we hear how important it is to access services locally. I understand, which I want confirmed, that people are willing to travel if they knew a multidisciplinary team and supports were available. Therefore, we should recommend that the State invests in these types of services. I want to be sure about the matter. If the committee agrees on points we need to know when we will be supported. I do not have a constituency but my colleagues do and support is an issue that can arise.

Is a genetic unit planned for the new children's hospital? Have the witnesses been involved in scoping or a needs assessment? I assume the new children's hospital will include such a unit but perhaps I am wrong. It is an important issue. This committee visited the site of the national children's hospital and we plan to continue to engage in discussions about the hospital. What recommendations should the committee make about the children's hospital and specifically about a genetics unit?