Wednesday, 10 July 2019
Genetic Testing: Motion
I was delighted to see this motion coming before the House. I am very pleased to have the opportunity to support it. I thank Senator Norris for it. I thank, in particular, the Martin family for the work they have done on this and for the public service they have done at a time when they have plenty on their plate.
Rare diseases are not rare. There will be more of them identified as we get better at diagnostics and all the rest. The issue of public awareness, mentioned by the Minister, Deputy Harris, is important. I am happy he mentioned it. Last week, the new chairman of the HSE talked about the importance of investing in amelioration, prevention and early intervention. We need to get to this side of the equation so we can dampen down the cost of trying to provide services for those concerned later on. Reaching out to people — advocacy groups, families and parents — has to go beyond simply raising awareness among the public. It has to be tangible and practical. The Minister said we will work with the advocacy groups. Real and practical support has to be offered. The Minister of State, Deputy Finian McGrath, will be well aware of Down Syndrome Ireland, a password for advocacy over decades. There are many other such organisations throughout the country. The support has to be practical.
We need to refer to Sláintecare in this debate. It has a role to play in moving to the side of the equation to which I refer. We have had the recent independent review group report, the Catherine Day report. It underlines very strongly the advocacy role of organisations, which are often seen only as hard service providers. We should bear in mind their closeness to families and the involvement of families therein. If I am repeating some points, I am doing so very deliberately.
Mr. Martin and his family should not have had to push and lead themselves. There is still too much of this in this country.
I have seen up close the effect on families of delayed diagnosis or no diagnosis, particularly where there could have been one, in parallel with reluctance or slowness on the part of the health services in giving support where there is no diagnosis.It is as if the services are saying that they know what families are going through but that the families need to go home. That is not acceptable. It is inhuman. We have to be seen to stand by people at their hour of greatest need. We all have to find ways to do that. The Minister, Deputy Harris, spoke about people experiencing more than loneliness. People are left feeling that they are totally on their own in a country that is not a basket case but is among the wealthier states on this globe.
I thank Senator David Norris and welcome the remarks made by the Minister. We have a number of vehicles, including the independent review group report and Sláintecare, to move on those practical matters.