John Crown (Independent) | Oireachtas source

Please accept my apologies for not being present at the beginning of the presentation. This is an extraordinarily cruel disease. The word "cruelty" repeatedly springs to mind. It is as if nature conspired to make something about as bad as it can be. One can only imagine the horror of most people on understanding that they have the disease and on seeing their future, both in terms of the genetic consequences and the actual physical decline. Being pessimistic about it, there is no huge optimism that in the short term there will be a great treatment for the disease. Hopefully there will be. I live in the world of research and one hopes that things will improve. We should support research and make sure it is available to our patients. We may or may not get a pay-off from doing research, but we could get a pay-off tomorrow from fixing the social supports for these people. About 90% of what can be palliated, theoretically, could be palliated if we had the will to do so. We are not waiting for anybody to discover something. All we basically need is to have enough support facilities for people who are in a phase of their illness which can be managed at home with augmented support, to give some degree of relief to their incredibly hard-pressed family members.

I ask that the witnesses quantify something for me, and I apologise if they have already done so during the course of their presentation. How many dedicated inpatient bed equivalent units do we need for people who are in the final stages of the disease, when it becomes very difficult for people, with the best will in the world, to look after a severely disabled, advanced HD patient at home? What would we need? How many beds would we need? I also ask the witnesses to give us a broad outline of a person's life expectancy after he or she becomes totally disabled and entirely dependent. What is the average length of the phase during which a person is exhibiting symptoms but can still maintain a fairly high degree of self-care? That would be very useful information to have. I have a suspicion that there are two very simple numbers here, one of which is how many beds or inpatient units we need and the other of which is how many extra carers we need so that people can get some respite during the phase of their lives when they are being cared for at home. I suspect that what is needed is not incredibly expensive. I can tell the committee one thing we could do tomorrow which would help, and I have raised this before. We can say that all those people with Huntington's disease will automatically get a medical card. I cannot understand why that is not the case now. I do not care how rich or how well-off these people are. Given the level of support they need, they should not have to worry about getting or losing a medical card. It is a very uncommon disease and such a measure would not impose a huge economic burden on society.

I thank the witnesses for the great work they are doing. I hope we will see advances in the treatment of this disease, but we must consider the worst-case scenario - maybe we will not. Finally, I have one more tougher question. Is there much prenatal testing being done in Ireland? Do we have adequate support services for people who may wish to explore the route of prenatal testing, with all of its implications?