John Lahart (Dublin South West, Fianna Fail) | Oireachtas source

I thank the Chair. Briefly, I thank our committee's guests for their presentation and paper. I am a Government backbencher so I will follow up with the Minister on these issues in writing. The witnesses have acknowledged progress.

I take the point. There is no point in rehashing stuff. Huntington's disease was not mentioned. I have advocated for people with the disease. While the care pathway is nothing like it needs to be, it is down to the Minister, Deputy Donnelly, that we have made significant progress compared with two or three years ago. It is nothing like it should be but we have made progress. That was not acknowledged. I know there are 30 different neurological organisations in the umbrella group which is the NAI. Huntington's was way out on its own and ignored. Now it is not. I acknowledge that much more needs to be done. It has been brought in from the cold. It is a voice that is being listened to for the first time. I know the NAI has to make its pitch when it comes in. I could be very political but out of respect to the witnesses I will not be. Stuff is going on in this House. I will not politicise this. I would like to have seen that acknowledged. Something I have learnt, which I have said before, as a TD in just his second term, is that you want to be all things to all men and women in your first term and then you realise you cannot do that and you try to home in and narrow. That is certainly my experience. Huntington's was one issue on which I focused. I found that being in government as a backbencher helped. I saw a significant difference and progress, notwithstanding that much more needs to be done. That needs to be acknowledged too.

I accept everything the witnesses have said. It is very frustrating. My late father had motor neurone disease 30 years ago at a time when there was no care pathway. I appreciate where it has come to. I agree on the value of a care pathway. Just to illustrate, I recall, in his experience, nurses at the time, through no fault of their own, not being remotely familiar with any of the symptoms associated with his disease. Now, they would be. That was very frustrating. They made demands of him that simply were impossible because they were not familiar with it. I get that the care pathway is only a tiny bit of it.

That was the contribution I wanted to make. I thank the Chair.