Gerard Craughwell (Independent) | Oireachtas source

The Minister is welcome to the House. This is my first time to meet her in this House and I offer my congratulations on her elevation.

I heard the Minister interviewed on a recent RTÉ programme. She came across as a person who is not prepared to take any old answer. She came across as an assertive and committed Minister. One of the problems with the position she holds is that when things go wrong, the Minister is held accountable and fired while the people who made things go wrong continue in their posts.

My colleagues have mentioned the €19.1 million. We need clarity on that. Where did that €19.1 million go? Was it put into the scoliosis system? If it was, can we have documentation to make that stand up? It is extremely important that parents and children, but particularly the parents who are looking after the developing child, have some assurance that the moneys sourced by Ministers to carry out a specific task are spent on that task and only that task. We cannot have people second-guessing what the Minister may or may not have thought at the time. The Minister knows better than any of us how difficult it is to fight one's corner and to get money at Cabinet. We cannot have people second-guessing what the Minister does.

On scoliosis, I am mindful of what happened in respect of cystic fibrosis, CF. We were able to isolate CF within St. Vincent's Hospital.People suffering from CF are always guaranteed a bed, if they need one, in a safe and sterile environment where they are not going to be subjected to infection from other parts of the hospital. In the case of scoliosis, maybe we have to go back to the drawing board a little and look at things. First and foremost, we should have a triage system. When a parent gets notice that their child has scoliosis, the first thing that happens is discussion among their relations and friends about how the child may have to have surgery. It has been pointed out more than once that not every case of scoliosis requires surgery. Imagine a family waiting for a year, however, to see a consultant and within ten or 15 minutes, the consultant says the child does not need surgery and that they can be dealt with in a certain way, and they are sent out the door. They would be devastated and would not know what to do. They would have been planning and been set up to think their child would need to have surgery and, suddenly, the child does not need surgery. They would go out the door wondering whether they were being fobbed off and whether the consultants were trying to shorten the queues. When they look at their child, they see that the child has a problem and after being given 15 minutes, they are out the door, not knowing where they stand.

We need a little transparency at the very beginning, when the diagnosis is made. Parents need to be made aware of the fact the child may or may not need surgery and that following MRI or CT scans, or whatever is involved, a clearer picture will emerge. In the case of a child who does not need surgery, they should be put into a different stream in order that they are not in the same queue as those who need radical, altering surgery. The family should know from the earliest point possible that the child is in a position to be dealt with without invasive surgery, and they should be absolutely delighted to get that news.

When my colleague Senator McDowell put this Bill together, he did so on the basis that Ministers cannot always be accountable for what happens within the Health Service Executive. This is protection for the Minister, the families and the children because there will be a statutory basis on which scoliosis treatment is given. When I look at the numbers today, it appears we have a serious problem trying to understand why the numbers are increasing. Why was there an increase of 10% between 2024 and 2025? What is going on there? Is it that we have become better at diagnosing the situation? Have the clinicians become better? Of the 233 children who are on a waiting list, 43 have been on that waiting list for over six months, while 15 have been on it for more than two years. I wonder how many of those 43 children will, at the end of the process, be told that they do not need surgery and that they need a specific brace or some sort of physiotherapy to bring them over the line. This is where time is lost. This is where anger grows. This is where doubts and distrust arise. If someone who has been waiting a long time is to be told, at the end of that wait, that they actually do not need surgery, that they are fine and that they can be helped with a brace or physiotherapy, the earlier they get to that stage, the better. Once we know a child does not need surgery, we can then put them into a stream where they are dealt with by a different set of clinicians or medics. We can free up the surgeons' time to do what they do, namely, carry out the surgery on the children in question.

It is extremely difficult to expect surgeons to interview and speak to ten, 20 or 30 parents in a particular session in an afternoon. We have all been in those clinics at some stage or another, where there are massive numbers. All the parents are at high levels of anxiety. All of them are waiting to see a surgeon and, at the end of the day, time constraints limit how long the surgeon has to explain the situation.For surgeons it is a question of dealing with facts which, sometimes, are not easy to take. From that point of view, I am really concerned that what we should do here is to make an accountable system, one where everything in it is transparent. Accountability and the reporting back to the Minister and those who follow her is vitally important in order that she is kept aware of the situation. If we can do it with CF, we can do it with scoliosis. Scoliosis is a horrible, painful condition for those who suffer from it. As the Minister will know, when any sort of illness enters a family, it finds it way down through the entire family. The person suffering from the illness becomes the focus of the family. Other kids feel resentful that mum and dad were tied up with the child who has the condition while they were left to their own devices.

The prospect of using the purchase fund to send children to wherever we can get the surgery done quickest brings other problems. It may bring problems of a working parent having to take a leave of absence to go with the child to the United Kingdom or the United States. Again, we have to make provision there to ensure that the family does not fall into some sort of economic problems. From that point of view it is hugely important.

I really appreciate the fact that the Bill will not be contested and the Minister will not object to it. That is really important because it shows that she has similar concerns to those of our group. When Senator McDowell drew up this Bill, it was about the children and families. It was never going to be a political thing. I abhor the notion that Ministers be kicked all over the place purely because something under their area of responsibility did not work. We should never get to that stage. We should hold the people on the coalface accountable; the people who are wrong in this. I heard the Minister speak about the need to have weekend cover in hospitals and things like that. She clearly has some very strong views on how to fix things within the health service and I really applaud her for that. It is wonderful that she has taken that stand. What I would like to see now is that we use this Bill to ring-fence scoliosis as a condition that can be looked after under the Bill.

I missed the opening part of Senator McDowell's contribution but he probably adverted to the fact that scoliosis does not just affect children. Children grow into adults and adults develop problems as they grow older. Those who are diagnosed with scoliosis will have to live with it all their lives. There will be constant visits to clinicians and there will be constant issues that have to be dealt with. With any of these chronic conditions, there is a need for a commitment from the State to look after you from day one. However, there is a problem. When I was president of a union, one of the officials in the union said to me, "Ah, we only have to put up with you for a year and then somebody else will take over." There might be a certain amount of that view within our public service - that a particular Minister will be gone after the next election and somebody else will have to deal with it. That is why it is important that the legislation is in place to tie this down regardless of who is the Minister in the position at the end of the day.

I could go around in circles all afternoon but I am not going to do that. I thank the Minister for her time. I believe she is a seriously committed Minister and has her eye on the targets she wants to meet. We would like to support that in any way we can, but I really do want to see this Bill pass into law.