Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

My apologies for being absent for part of this meeting. We have not mastered the art of bilocation here yet. I have a number of questions and observations to make. I have received a number of e-mails from people with Huntington's disease and their family members. They are concerned about a number of issues. As Professor Crown has said, we must look at the worst-case scenario but also deal with where we are currently in terms of many of those with Huntington's disease. Speech and language therapy, physical and occupational therapy, neuropsychology and social work services are the key areas about which Huntington's disease patients and their families are concerned. Family members need supports. The patients themselves obviously need support, but their families also need a broad support base around them as well. Where are we in the context of developing individual care plans or pathways? Such plans are commonly espoused for people with rare diseases. Clinical care plans need to be put in place, particularly in the context of a lack of nursing homes that are capable of dealing with a person who has Huntington's disease. How far down that road are we at present?

People with Huntington's disease, motor neuron disease and many other neurological diseases cannot get medical cards until they are in the very final stages of a very debilitating illness. Clearly, we have to look at that. Reference was made to the fact that it places a very small burden on the State but a huge burden on a family. We must tip the balance in favour of the individuals and families concerned with these particular illnesses and diseases.

Reference has been made to genetic testing. Senator Crown mentioned how cruel the disease is. It is bad enough to have to deal with one's own illness, but there is also the issue of knowing it could be passed on to the next generation. Is genetic testing automatically provided to a family where there is a diagnosis of Huntington's disease? Is there a cost implication or is it always provided by the State? In the context of international research, it is often the case with rarer diseases that we will never have the capacity to do enough research here on our own. We do not have a large enough pool of people, enough clinical expertise or sufficient research facilities. How far down the road are we in terms of linking in internationally? We will meet the Commissioner next week, and I note this is an area where the European Union should play a greater role in driving medical research to ensure there is a link among researchers around Europe. Where are we in those terms?

For the organisation supporting people with Huntington's disease and their families, respite and social care are very important. If nothing else, today's session should suggest the importance of supporting family in terms of their immediate needs, including respite and medical cards.