Teresa Costello (Fianna Fail)
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I welcome the Minister to the House. No. 1 is the Health (Scoliosis Treatment Services) Bill 2024 – Committee Stage. This debate is to adjourn after two hours if not previously concluded.

Michael McDowell (Independent)
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I welcome the Minister to the Chamber today and thank her for being present and for making it to this place after all her travels.

This legislation is not some exercise in opportunism, nor is it intended to be part of a party-political blame game or a point-scoring exercise. It is simply a measure to ensure a tragedy which unfolded for very many children and their parents comes to a timely end and that the trail of broken promises, missed targets, disappointment, heartbreak and suffering for so many children and their families arising from the delays in the provision of proper treatment services for scoliosis sufferers should come to an end.

There are a couple of points I should make. First, my colleagues in the Independent Group and I have received overwhelming support, not merely from scoliosis action groups, advocacy groups and parents but also from medical practitioners and specialists, for the proposals in this Bill. Second, not everybody who suffers from scoliosis needs surgical treatment. In fact, only a small minority of them need surgical treatment. It is very important to keep that in mind because it has two consequences. We cannot have a system where the specialists who provide surgical interventions end up having to act as the people to whom parents and children are sent for routine consultations, because the result is that sometimes these specialists have as many as 20 or 30 appointments with children and their parents in a single day.The result of that is they get about ten minutes each. The result of that is that, having spent maybe six months waiting for this appointment, they are told at the end of those six months that their child does not need surgery or a decision will have to be deferred. They wonder whether they are being treated to the standard which is necessary. The solution to that particular problem is this: we need a different pathway for scoliosis sufferers who are not in need of surgical treatment from those who are. They cannot all be bundled onto the same waiting list and treated, interviewed and assessed as though they were candidates for surgery by the people who would carry out that surgery. That is a fundamental point for the future. A wholly different approach has to be taken to scoliosis sufferers.

I am satisfied, from what I have heard, that we need to ring-fence the resources going into scoliosis treatment and the physical resources available to sustain 500 interventions per annum. That involves keeping bed space available in hospitals where treatment is available and not wiping out the programmes for surgical interventions because of surges or seasonal respiratory crises which afflict hospitals. An example where ring-fencing facilities has worked is cystic fibrosis. There was a time when cystic fibrosis patients were thrown in with everybody else and treated as if they could join the queue. If other people were in with a broken leg, a heart condition, pneumonia or whatever, then cystic fibrosis sufferers' treatment was postponed or bed facilities were not available for them. The HSE probably does not like the idea of ring-fencing, just as the Department of Finance hates the idea of hypothecated or ring-fenced funds for particular purposes. I know it wants all its money, in theory, to be fungible and capable of being moved this way or that as the exigencies of service require. Normally, I would be sympathetic to such a view and conscious of the fact that, among people suffering from critical, long-term or developing illnesses, we cannot in principle have a hierarchy of suffering. Everybody is equally entitled to receive the degree of service appropriate to their condition but the obverse of that coin is this: there must be equality of access to services which are critically needed.

I have a stack of individual testimonies by families who have waited years for their children to receive surgical treatment while the degree of scoliosis, the pain and the damage to other organs increased every year in intensity and while their mobility and their capacity to walk and do the things all kids want to do and all parents want their kids to be able to do was affected. I have a catalogue of the most heart-rending stories.I do not propose to spend Committee Stage of the Bill putting them on the floor of the House for drama's sake because we are not here in the business of competitive sympathy. We are all here in, I hope, a spirit of co-operation and positivity towards addressing the needs of those children, the needs of the family and the needs of the health service to cater for them.

Another point that I want to raise with the Minister in the course of the debate on this legislation, and the necessity for it, is what happened in her Department last year. We were led to believe by her predecessor - I believe he acted in good faith - that he had assigned just over €19 million extra for scoliosis-related treatments. His Department advised him, given he did not think this up himself, that it had every appearance that those funds were dissipated to more general purposes within the HSE’s activities. He went public on that and said he was going to have an inquiry conducted into it. I was surprised to see that an internal audit of the HSE was, in fact, carried out. It presented its report in October, before the general election was held, but the report was not published until after the general election was held. It suggested there was no dissipation or misallocation of the €19 million that the Minister had claimed in public appeared to have been used for other purposes, but that it had all been used for the purposes for which the Department of public expenditure had authorised this increased payment.

When I looked at the report of the internal audit function of the HSE, I noticed that the figure of €19.1 million does not figure there at all. There is a figure in excess of €30 million and a figure in excess of €21 million, but the €19.1 million that the Minister had publicly announced simply does not feature, and the HSE, on an internal basis, gave itself a clean bill of health. I cannot from a distance decide whether the Minister's suspicions, which clearly were shared by the Department because he would never have gone on a solo run by himself, were justified. I am often sceptical about a body conducting an internal review of its own use of allocated resources when it comes up with the proposition that there is “nothing to see here”. I find that slightly worrisome.

I do not want to make a Second Stage speech. The section we are dealing with provides:

The Health Service Executive shall establish and maintain a national treatment service for the timely and effective inpatient and outpatient treatment of scoliosis within the State at such hospitals and other clinics and centres as it may designate for the timely detection, assessment and remedial treatment of scoliosis for all children and adults normally resident in the State.

That is a duty to be imposed upon the HSE to establish and maintain this service for timely and effective inpatient treatment. It has to be read in conjunction with the next section, which casts a statutory duty on the HSE to provide and maintain adequate resources for the carrying out of the service under section 1, a statutory duty which, if there is a failure, could give rise to legal remedies. The combination of these two sections is intended - I make no secret of it - to give enforceable rights to people who are left waiting for years for treatment that should be provided in a more timely manner and which is not, for one reason or another, being so provided.

There is a last point that I want to make. Section 1 deals with a service within the State but it is not the complete story of the Bill.Section 4 provides that "the Health Service Executive, where [it feels it necessary to] comply with its duty under section 1 to individual patients, [can arrange] for the provision of such services at hospitals, clinics and centres outside the State where for practical reasons the timely and urgent provision of such services at the standard referred to in section 2 so requires". Most children and most families do not really care where they receive their treatment when it is badly needed.

However, let us make this point as well. The cost of 16 people receiving treatment at Great Ormond Street children’s hospital or a centre in New York was more than €5 million. That is a very significant sum. It is €500,000 a go. I have no doubt that is justified because this would not be done lightly, or it would not be done if an alternative service was available in sufficient time in the State. The point I am making is that if we are going to do it, either through the National Treatment Purchase Fund - which I do not think is involved very much in this arrangement; I think it is done on a slightly different and less formal basis – one way or another, it will cost money to do justice to those children and their families. Unless a specialist skill that is unavailable in Ireland can be attained abroad, the expenditure involved should ideally be made in Ireland and the funds necessary to achieve it should be provided by the HSE.

This Bill should never have been necessary. I know that the electoral cycle made it difficult for the Government to decide on the principle of the legislation in the run-up to the recent election because in May and June of last year, we did not know whether we were in an immediate electoral cycle and whether the election would be held at this time this year or at some intermediate date. However, this is not about electioneering. This is a commitment made by the supporters of this legislation and the Members of this House, who unanimously supported it. Nobody opposed it on the previous occasion. This is the occasion on which we can actually put in place measures whose cumulative effect will be to bring justice and healing, prevent suffering to a group of people who have suffered too long, and ensure that those who need those services and develop those conditions are adequately dealt with by the Health Service Executive in Ireland.

Victor Boyhan (Independent)
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I think this is the first time I have been in the House since the Minister for Health took up her position in health. I wish her well. I have known her for some time. She is my local TD, so I see the work she does at the coalface in our constituency. I genuinely wish her well. I think she is the right person. She has the tenacity, commitment, intelligence and political nous necessary for taking on this task.

Before I concentrate on section 1, I might put the context for those who have joined us since the previous Seanad. Our Bill seeks to “impose on the Health Service Executive certain special duties and powers in relation to the establishment of a specialised treatment service for the inpatient and outpatient treatment of children and adults [with] spinal scoliosis who are resident in the State and to confer certain duties and powers on the Minister for Health in relation to the service to be established and to provide for related matters”. It is a joint initiative by the Seanad Independent Group.

I am conscious this is Committee Stage, and I want to stay focused on section 1, which is the section we are dealing with now. However, it is important to put a few pointers here. Senator McDowell is correct that this Bill should not have been necessary.A certain turn of events precipitated this. We had a robust engagement with the Minister's predecessor, during which there were more questions than answers. The figure of €19 million was one aspect of that debate.

I am a former director of the National Treatment Purchase Fund, NTPF, having served two terms on its board. Therefore, I know the workings of the fund, albeit that things have always moved and it is an evolving situation. The problem is that we need acute waiting lists. We need exact validated data on a regular basis regarding the number of children waiting four months or more for scoliosis treatment. There is a role for the NTPF in the recording of and reporting on datasets on a range of waiting systems. I do not know whether the Minister has had time to meet representatives of the fund, but the fund has a function and role. It is slightly removed from the Department, but fully under the remit of the Minister, which I accept and acknowledge. The fund has a proven track record and expertise in maintaining data. There is a confidence in the data the fund releases. Of course, it works in collaboration with the providers of services and the Department. Central to what we propose is a legislative role for the NTPF in respect of its recording of other procedures and waiting times in the health service. There is a role for the fund in tackling this problem.

International outsourcing is an issue. We need more exact information on the ring fencing of beds. One of the problems is the lack of clarity on issues like the ring-fencing of beds, the availability of theatres and MRI capacity. Senator McDowell referred to the auditor's report which was signed off on 18 October 2024 but not published until December of that year, an interesting timeframe considering the political background and landscape at that time. I do not know why there was a delay from October to December. The report is now in our hands. It has raised a number of issues. I might add that this is a HSE internal audit report. Having had a general read of the report today, I will certainly read it again. There needs to be follow-up regarding some of the issues raised in the report.

I draw the attention of the Minister to the risk mitigation factors set out on page 57 of the report. The report refers to reputational risk to the CHI owing to the interest of the media and advocacy groups. That is a concern. The report is concerned about what the media might think. We need to consider the risk of mitigation. If I was the Minister, I would not be satisfied with the report. I think it warrants an external review. This is an internal HSE report.

The report clearly has a status in regard to each of the risks and mitigations, and I draw the attention of the Members to this very detailed report. It also raises issues in respect of MRI facilities and infrastructure in place but not put into use, as well as staff shortages. We are at a time of crisis. I do not want to spend too much time on this part of the debate going through drama, as Senator McDowell said.

We have a problem. I do not doubt the commitment of the Minister. It is great that someone fresh is coming into the Department. We need greater accountability regarding the €19 million figure the previous Minister told us about, as a result of questioning by Senators McDowell and Clonan. That money was swilling around somewhere, but no one quite knew where it was spent. I presume it was spent within the health budget envelope, but again we need reassurances on that. As the Minister who has taken on these problems, she needs reassurance.

We also need to consider the capacity of Temple Street Hospital, Crumlin Hospital, Cappagh Hospital and Blackrock Health. That relates to the core of the Bill, which is covered in section 1. The issue is the task force. The Minister was given a brief when she came into office. I have had a look at it. Buried in it is the suggestion that the task force would possibly be wound down.There would be a new mechanism in place. I am talking about the work and the task force of Mr. Mark Connaughton SC. That is what is in the Minister's brief, but again, I have only read that. Clearly, the Minister is someone I have high expectations for. I am glad she has signalled that it will not be happening, and I am greatly encouraged by her firm nod with regard to that - it is really interesting - but that was put on her desk by officials in her Department, so it raises questions about the relationship between the Department of Health and the HSE, and the then Minister. However, the Minister, Deputy Carroll MacNeill, is the new Minister, and I have high hopes for her, so we would like to hear more about it.

That briefing document in itself is fairly challenging for the Minister but this is not the day to go through that and we will have another opportunity to talk about that. We are on the issue of the availability of nurses, the availability of theatres, the resources that are required, and the validation of the waiting lists. It goes back to that central theme in our proposed legislation - the role for the National Treatment Purchase Fund. That is a good model. It works, and I want to see on a monthly and quarterly basis the figures for the National Treatment Purchase Fund. I rang the National Treatment Purchase Fund - do not forget, as I have told the Minister, that I was a director there twice - and I spoke to an official there today who said they did not really have a formal role in all of this. They described the Minister as having made arrangements in the UK, in the NewYork-Presbyterian Morgan Stanley Children's Hospital in New York, and of course Great Ormond Street Hospital for Children. I do not like informal arrangements, and I refer to 16 patients who received surgery. I understand again, from briefings I read from a number of reliable sources, that there are plans to continue that practice for the moment, and I accept that. The Minister might touch on that because, again, it is about accountability, transparency and communication. It is about engaging with the patients, the children - that is a really important part - and their parents and guardians. There is an information deficit on that.

I want to touch on two or three issues. We have problems. The task force is really important and I had hoped it would stay in place. Had I known what I know today, having read the brief the Minister was given, that there was now going to be a question by her Department about the task force, we would have been adding additional amendments to this legislation. What the Minister might say and share with us on that is going to be helpful.

We want to get on with it but it is important we are going to learn. We have to analyse the past and the mistakes that were made. We have to increase capacity. We have to address the risks and mitigation that are in the audit report that is before the Minister. I will finish by saying this. I want the Minister to look at that report. I respectfully ask her to look again at that HSE internal audit report. There are a lot of questions there, and it is a matter for the Minister but it may warrant a referral to a more specialised second look or an external look. We are here to work with the Minister; it is not about beating people up here. It is about making this arrangement and tackling these issues so we can address them for the people who are on these lists.

Teresa Costello (Fianna Fail)
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I call Senator Duffy, and I remind Senators we are speaking to section 1.

Mark Duffy (Fine Gael)
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The Minister is very welcome, and I thank her for joining us for the discussion on such an important topic for so many vulnerable people.

I raise a specific example of an issue regarding scoliosis, which relates to a 16-year-old child in my constituency of Mayo who was born with neurological issues and in 2020 was diagnosed with scoliosis. In 2023, he was examined and identified for surgery. Unfortunately, since then he has not had treatment. He has a 103-degree spine curvature and has all of the identified reasoning for surgery. Unfortunately, the hospital the family has dealt with has decided against surgery. The family themselves are heartbroken with the lack of a second opinion that has been afforded to them.

The hospital stated it has a second opinion that has been given but it has been given internally within the hospital setting. They want a second opinion from expertise in either London or Boston.I have the permission of the family in question to speak but I will not go into the details. I would appreciate if the Minister were able to give it attention. Perhaps we could speak about it more directly offline. Every day, the child is declining in health. The family feel helpless and heartbroken because of the situation. I would love if we could work together to help the child or at least give some hope through a second opinion. Perhaps this Bill could make room for second opinions beyond the internal orbit of the hospital in which a case is being dealt with. I would like to see the opportunity for second opinions, whether from London or Boston, and I would appreciate the Minister's support in that regard. I thank her for giving attention to this issue.

Sarah O'Reilly (Aontú)
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I welcome the opportunity to speak on this Bill, which Aontú will support in both Houses. It is a pity that the Government's promises have rung so hollow that my colleagues in this House have been forced to introduce a Bill to push the Government legally to fulfil its commitments to people with scoliosis. It is a condition that has severe physical impacts, but it is not just a physical ailment. We know it can also lead to harmful emotional challenges. Prolonged wait times for treatment only exacerbate the condition.

Scoliosis particularly impacts the lives of children and adolescents. As they grow, their bodies are still developing and untreated scoliosis can lead to severe complications, including chronic pain, respiratory issues and reduced mobility. This is happening, unfortunately, to too many of our children.

In 2017, the then Minister for Health, Deputy Harris, promised that no child would wait longer than four months for scoliosis treatment. Last year, in reply to a parliamentary question from Aontú, we learned that 55 people, between Temple Street and Crumlin hospitals, were waiting more than a year for surgery. That is not good enough. Because there is little accountability, Deputy Harris did not have to follow through on this commitments. This Government has refused to cherish the children of the nation equally. It is failing children with scoliosis. We have all seen the headlines and photographs, and the lengths to which people have had to go to highlight their individual traumas. It is an embarrassment that a First World country such as Ireland must resort to passing this legislation to ensure our most vulnerable are protected and treated. It is to our shame that this legislation is required at all. It should not be necessary. I support this Bill because it is a step in the right direction towards improving the quality of life of those affected with scoliosis. I thank the Independent Group for bringing forward the Bill.

Gerard Craughwell (Independent)
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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.

Tom Clonan (Independent)
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I thank the Minister for coming to the House this evening. I echo my colleague's congratulations. Déanaim comhghairdeas léi. I am delighted she has been appointed as Minister because, as others have said, she has the tenacity and capacity to deal with the many challenges that confront us in health. I thank Senator McDowell for drafting the Bill, bringing it forward and having it reinstated on the Order Paper.

I want to specifically address section 1, relating to the establishment of a scoliosis treatment service "for the timely detection, assessment and remedial treatment of scoliosis for all children and adults". That is the key point.As a wealthy republic in the First World, can we actually treat disabled children within the therapeutic window? I am afraid to say that, as it stands, we cannot and we do not. We are failing to save children and adults in the Republic. It is not because we cannot do it, because we certainly have the financial wherewithal to do so. It is because we choose not to. As I have said before, if anyone here, heaven forbid, presents at an accident and emergency department with chest pain, notwithstanding all of the chaos in our emergency departments, they will be treated. If they need stents, they will get stents. If they need a bypass, they will get that. If they have cancer, notwithstanding all the delays and the chaos in our emergency departments, they will be seen by an oncologist, they will be treated by the team and they will get chemotherapy, radiotherapy and so on. We are seeing improved outcomes in that regard. If you are pregnant and you go to a maternity hospital, you will be seen, you will be scanned and in due course, depending on your choice, you will be brought to a delivery suite and your child will be delivered. If, however, you are a disabled child you will not be seen. A pregnant woman would not be given a handout or a link to YouTube and be told this is some advice on what to do when the baby comes, best of luck with it and she will be seen in five years' time. That is not what happens in any other branch of medicine, but when it comes to disabled children, they are denied treatment, simple as. We have children on those acute waiting lists who have become inoperable.

I have met the parents and families of those children. There are people watching this evening from OrthoKids Ireland and from the Scoliosis Advocacy Network. There are hundreds upon hundreds of Irish families who find themselves in this situation. As Senator Craughwell and other Senators have said, it is very difficult to get facts and figures and transparent information from Children's Health Ireland, CHI. For my best efforts, and the figures are disputed by the parents and the advocacy groups, at the moment more than 130 children in acute need of surgical intervention are on a waiting list and have no date for surgery or for an appointment for surgical review with a qualified spinal surgeon. This all speaks to the requirements that are set out in section 1. Every single one of those children on that waiting list is not getting the surgical interventions, even though they are in acute need of it. I just want to be clear that when they do get the surgical intervention, it is often too late. It is not happening within the therapeutic window. Treatment delayed is treatment denied.

I heard the word "misspent" used by the former Minister about the €19 million, that the money was misspent and that it was not spent on those purposes for which it was originally intended. Members have probably heard of the expression "a misspent youth". We have children on that waiting list whose youth and potential as human beings, as adults and as citizens is being misspent. It is being squandered away in a republic that has plenty of money. It is not just a national scandal. I will refer to this further. What is happening to our disabled children is an international medical scandal. It does not happen to able-bodied adults when they present to the accident and emergency department with chest pain or cancer. This is something that is exclusive to disabled children, which begs the question what kind of Republic is this. If we deny treatment to a group of citizens on the basis of their ethnicity, then we would be racist. If we denied it on the basis of their sexual identity or their sexual orientation, we would be a homophobic nation. We are denying disabled children treatment based on their additional needs.This is, by definition, an ableist republic. Unfortunately, the reason we, the grown-ups in the room, are introducing this legislation on Committee Stage today is to force or compel the State and its agencies to do what is right.

Let me tell the House what delayed and denied treatment looks like. I say this as a carer and parent to a young man who had spinal surgery for scoliosis in 2018. Like all the children on this list, his surgery was delayed. I say this as a public representative. The only reason I am here, as the Minister knows, is because of our family's experience of disability and unmet need across all aspects of disability in this country. I am also mandated by the UN Convention on the Rights of Persons with Disabilities, to which we have been fully signed up since 31 October, to speak to the lived experience of disability, specifically in relation to scoliosis and the provision of a service as set out in section 1.

My son should have had scoliosis surgery when he was about 12 years old but he did not. It was delayed for four years, during the teenage years when little organs are developing and all of these changes happen. From the ages of 12 to 16, we watched our son slowly twist and turn in his wheelchair. In Ireland, the spines of disabled children are allowed to go to a point that is not accepted in any other country in the European Union or the developed world. We allow our children and their spines to deteriorate to such a point that in my son's case, it compromised his breathing. His lungs were compressed as a result of the twist in his chest cavity to the extent that he only had about 30% lung function. That impacted on his voice and ability to speak.

The other joy of being disabled in Ireland is that my son never got speech therapy or physiotherapy. No, not in Ireland, where you do not get meaningful speech therapy, occupational therapy or physiotherapy. As a family, like the hundreds of children and families who are on that waiting list, we have to watch our son deteriorate for lack of a service, as set out in section 1 of the Bill. This is not the Minister's fault. This is a situation she has inherited but it behoves me to point out the stark reality of this and the lack of a service, as set out in section 1.

As I said, my son's lung function was down to about 30% but his heart was also compressed. We went to a paediatric cardiologist in Temple Street hospital who did a scan prior to surgery. Initially, she could not find his heart because it was in a part of the chest cavity where it should not normally be. This was so unusual she asked us if we could record it because it was a teaching point. She got the registrars to come in and have a look. We all watched my son's little heart beating in a part of the chest where you would not normally find a heart. This meant that for surgery, he became a respiratory risk. We had a consultation with the anaesthetist who told us she was not sure if it would be safe for him to have a full general anaesthetic and that, therefore, he might be inoperable.

My son had the surgery in 2018. We did it during transition year when his friends were off doing their activities. He went into Temple Street hospital. The surgery for spinal fusion involved a procedure of about 12 hours. His development was restricted because of the scoliotic curve to his spine. He is only a little fella. During the procedure, they had to use about 8 l of blood and blood products. Imagine that quantity or volume of blood. The surgery went on for about 12 hours and, luckily, they were able to correct the curvature, although not completely. They were able to alter it, put in the rods and do the spinal fusion. I went up to intensive care at around midnight and the reason my son was so delayed getting out of the operating theatre was that the anaesthetist manually extubated him because she felt that if he had gone into the intensive care unit intubated, as he was, he would not have made it.She waited with him, manually did the compressions and then, manually, very carefully and slowly over a period of hours, extubated him. Let me tell you, the problems in our health services are not the making of clinicians, consultants, registrars or nurses. They firmly reside within the health services' executive management – on their boards, in their executive leadership teams and with their managers. Clinicians in this country are doing their utmost under very difficult conditions.

Without being too melodramatic or using too much hyperbole, for my family to have been told my son might not make it was unnecessary. It was for want of a service as set out in section 1. My son is now in his final year in college. His speech is poor and we as a family are left wondering whether that is a consequence of his not having had the surgery within the therapeutic window when developing. He is a small little fellow. I look at him sometimes and wonder whether, if we lived in a jurisdiction with proper services, the outlook would be different. His not having been in such a jurisdiction has certainly had life-limiting implications for him.

Let me put that into its context for the Minister from our experience, the lived experience of disability. Just before Christmas, I hosted in Leinster House a number of Irish and international paediatric spinal surgeons who were in Ireland for a conference. The American spinal surgeons, from a centre of excellence in Phoenix, Arizona, told me the situation for children on the Irish waiting list is unheard of in other jurisdictions. The spinal surgeons from Arizona and Texas told me that, as part of their corporate social responsibility or giving back, they sometimes take on charity cases, typically involving people who have come across the border from Mexico. Very often, part of the migration pattern involves people seeking medical treatment in the United States. These are children and young adults who are absolutely in extremis. The surgeons take on these cases on a pro bonobasis. They are all teaching cases because the patients' conditions have become so extreme that they are not seen in the normal medical environment in the United States. These are cases that would not normally be seen in the UK, Germany or Canada. The surgeons told me that the cases matched the profile of those of the disabled children on the Irish waiting list. One of them remarked to me that if you were to fly the 130 children on the spinal surgery waiting list by Airbus or Boeing to Canada, the UK or the US, where there is a centre of excellence, it would be declared an international medical incident and put on the risk register. People would ask what kind of country allows its children to deteriorate to this point, where they have long-lasting, life-limiting and life-altering outcomes – suboptimal outcomes. I want to be really clear about that.

The spinal surgeons were also very confused. I do not know how the Minister is being briefed but I have listened to representatives of CHI and the HSE at meetings of the various committees. I hope those committees will be re-established as soon as possible. The Minister needs to be really careful as to where she gets her information from. All surgeons require higher specialist training. They acquire surgeon membership and then specialise by doing a surgical fellowship. If you want to be a proper spinal surgeon, you have to do the higher specialist training in spinal surgery. If you want to be a urological paediatric surgeon, you have to do the higher specialist training. This is something the Minister needs to look into if we are to have a proper service.Are the surgeons being recruited and appointed by CHI actually fully qualified, with higher specialist training in spinal surgery and the necessary specialty training, usually acquired abroad? I do not think so. The reason I say this is because, notwithstanding what Senator Craughwell had to say, at present CHI is unable to provide annual spinal reviews with qualified spinal surgeons. These are for children who have had surgery, are awaiting surgery or are post surgery. They cannot provide them because they do not have the surgeons who are qualified to do so. This raises the eyebrows of the international community. We are outliers in this regard. Again, this is not a situation of the Minister's making, and it is not her fault, but it is something we really need to have a look at.

In every other medical specialty, higher specialist training is considered the norm in international modern medicine. The HSE is appointing doctors to consultant posts who do not have higher specialist training. This is a scandal. It is a danger to the Irish public. If we got on a flight to London and the pilot said they had not flown one of these Airbuses before but had done 12 hours in a Cessna and would be able to figure it out, we would not be happy. This is what is happening in our medical system with recruitment and retention. Again, this is not the fault of clinicians. The flight of talent from this country is not the fault of clinicians. It is not a lifestyle choice. It is a consequence of the manner in which the HSE and CHI are managed. People who speak out about these risks are subject to retaliation, reprisal and isolation.

I want to make a few points on section 1 of the Bill. We are coming to a point when Temple Street and Crumlin hospitals will migrate to the new national children's hospital. This is a point of great risk. Whoever will manage this will have to be brought in and asked what the risk management and assessment plan is for this. I believe children will suffer in this migration. The scandal of the national children's hospital is not in the €2.2 billion costs. It is not in the euro, the planning, the design, the bricks, the mortar, the windows or the potted plants around the place. The scandal is what is happening to the children on the waiting lists and to those families who are watching their children deteriorate. This is where the scandal lies.

Senator Craughwell referenced the precedent of the manner in which cystic fibrosis has been ring-fenced and protected as a service. This is good precedent for what we are seeking to achieve with the legislation for scoliosis. The same is needed for urology and for all disability services.

The Minister and we as a Legislature can delegate authority to CHI and the HSE. We can delegate authority to them to carry out the functions of the State but we cannot delegate responsibility. We are responsible for what is happening and what has happened to these children. I really hope that what is set out in section 1 of the Bill can be achieved. What happened to my child in 2018 is still happening today, seven years later. I am absolutely certain from what I know of the former Minister for Health, Deputy Harris, as a man and a citizen that he meant in the utmost good faith what he said eight years ago. He said this would not continue. It is continuing and we need to act. This is not just a national scandal; it is an international medical scandal. We have to stop being outliers.

With regard to all of the other legislation I hope to introduce here during the next four to five years, or however long the Administration lasts, we have to move away from a charitable grace and favour ableist approach to disability. We have to move to a fundamental human rights approach. I commend Senator McDowell on drafting this legislation because this is what it does. It confers rights upon disabled children.That is the only way we are going to be able to compel the HSE, CHI and all the other State agencies to actually do what it says on the tin. I thank the Minister for her patience and forbearance in listening to me, but it is just really important to set out the context.

Sharon Keogan (Independent)
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I welcome the Minister to the Chamber. Along with my colleagues, I too am delighted this Bill is progressing through this House. I draw attention to the first section that states this national treatment service is to be established "for the timely and effective inpatient and outpatient treatment of scoliosis" and that it will designate hospitals and other facilities for "the timely detection, assessment and remedial treatment of scoliosis". The emphasis here is on the word "timely", which is mentioned twice for good measure. Over recent years, we have been treated to one horror story after another of waiting lists and their impacts on patients. Previous Governments and Ministers for health have promised to reduce waiting lists and the numbers of people on them. While those promises may have been made in good faith, it is apparent, however, that they have failed to materialise. It is imperative, therefore, that the State steps in to take a greater role in oversight and ensure we deliver the healthcare our citizens pay for, deserve and need.

I return to the word "timely". Today, a mother from County Donegal agreed to share her story relating to her daughter, Jamie McGinley, to highlight the shortcomings of our current system. Young Jamie has been lucky in that her family managed to find treatment for her in Türkiye, although the fact they had been forced to do so due to the lack of timeliness in this healthcare system is shameful. The lack of timely provision of treatment in both our public and private healthcare sectors and the fact this has forced a family to seek solutions abroad at great personal expense to themselves is just another example of a wrong we urgently need to right. At 14 years old, Jamie's medical checkup found her condition was not urgent or serious. A year later, however, at the age of 15, she was told in Crumlin hospital she would lose function in one of her lungs if she did not receive surgery as soon as possible. Her timeframe for treatment was six to eight weeks. Her mother told us that, given her previous experience, such as having had to wait five weeks for an X-ray and having to go all the way down to Navan for it, and given the urgency of her case, the best option was to seek treatment in Türkiye.

In Istanbul, Jamie was able to receive all the tests and the surgery she required in a matter of days. That is a standard of timely treatment, not the months or years Irish citizens are expected to wait. Waiting times are causing enormous damage to real human lives. One of the consultants who spoke to Jamie's mother told her many patients often receive permanent damage to their lungs by the time they receive their pre-surgery tests. More generally, Jamie's mother highlighted a broader issue with waiting times, which is that the current system appears to prioritise the more straightforward and simple cases, especially those where treatment abroad is needed. Meanwhile, children and minors who have more complicated cases and suffer from one or more conditions, such as Jamie, who tragically suffers from Chiari malformation in addition to scoliosis, have to wait longer for treatment because they must wait on more tests and consultations. This is despite the fact they very often require treatment more urgently for precisely the same reasons.

As Jamie's mother describes it, the current system is one where the ones who need treatment the most wait the longest. Again, timely treatment of scoliosis is not only reactive treatment for scoliosis when it arises; it is also preventative treatment. Another young woman, whom I met today protesting outside these gates, agreed to share her story. She is Katie Byrne from Cobh in County Cork. Katie has just turned 18. She has cerebral palsy, a dysplastic hip and a twisted femur. Without surgery, she risks hip arthritis, full-time wheelchair use and scoliosis. Katie has spent 14 years and five months waiting for surgery. Let me just repeat that for the Members of the House. She has spent 14 years waiting. That is nearly her entire life she has been waiting for the surgery she needs.The explanation given to Katie as to why she cannot receive surgery is that she is too weak. She has been told her hip is not dysplastic enough and that she is too young for surgery. Then, believe it or not, she was told she is too old for surgery.

At this time, Katie is braving the pain. Her family have been forced to search for treatment abroad and are desperately seeking to raise the money for this treatment. Parents should not have to set up a GoFundMe page to get treatment for their children. That is down to our Minister for Health and the previous Minister for Health. It has been 14 years. It is all well and good to talk about timeliness and numbers on waiting lists, but we must remember that the horrific delays we hear about have enormous human cost and can change lives for the worse.

I am going to send the Minister the details of Katie's case. If she can do anything to avoid her having to raise €300,000 to go to America to get treatment, I would really appreciate it.

Joe Conway (Independent)
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Ba mhaith liomsa ar an gcéad dul síos fíorchaoin fáilte a chur roimh an Aire as teacht isteach go dtí an Teach anocht le héisteacht agus deileáil leis an gcás casta seo faoi scoliosis.

It is coming up on 70 years since a young Senator from Massachusetts, John F. Kennedy, wrote a book called Profiles in Courage. In it, he outlined the exploits and achievements of eight heroic Senators in the history of the United States since the civil war. It got me thinking that like the eight heroic Senators, the six Senators who devised this Bill for the House are a heroic six to whom we owe a great deal, in particular, Senator McDowell for his drafting of the Bill, but also the other enlightened Senators who put their names to it and made it all possible.

As an ingenue to this House, I was riveted by Senator Clonan’s relating of his son’s passage through his adolescent years. Senators of an independent mien have the ability and courage to devise legislation that is outside the orthodoxy of the parties, and then we hear people talking about the irrelevancy of the Seanad. The astounding thing I have seen in the House in the past couple of months is that the diversity of talent, insight, objectivity or whatever else makes it possible for a contribution such as that of Senator Clonan. Even though it was deeply personal, it underscores very heavily the point that we as a society are failing many people as a result of our inability to devise, promote and continue a health service that is fit for purpose.

Last week, I listened to the secretary of state for health of our neighbouring island, Wes Streeting, tell the House of Commons that in one fell swoop he was abolishing the biggest quango in Europe, NHS England. When I looked up the figures for the HSE, however, I found he was not. He should have been over here abolishing the biggest quango in Europe, our HSE. In my opinion, it is not fit for purpose.

Senators Keogan and Duffy spoke about local manifestations of what this Bill addresses. There is a litany of harrowing stories, not only those akin to that described by Senator Dolan. All over the country, in every art and part, i ngach aird den tír, there are families and children waiting for surgery. I am familiar with one young lady of 18 in County Waterford who is wheelchair bound and has been waiting more than four years for this promised surgery.Those years, as Senator Clonan said, are stolen from this child, never to be got back. When we are talking about profiles in courage, what we have with scoliosis, and indeed many other conditions in Ireland, are profiles in misery and denial, and the robbing of futures. It is a terrible legacy to leave to the people who we are supposedly looking after.

I get great energy from the House tonight. Senators will know the political expression, "We are pushing at an open door". With this legislation, we should be pushing at an open door because it deserves to see the light of day. Those who are suffering from scoliosis and their parents deserve it.

Nessa Cosgrove (Labour)
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The Minister is very welcome. It is good to see a senior Minister here. This is the second time that she has come in, which is appreciated. I commend Senator McDowell and the rest of the Independents on bringing this Bill forward. It is unfortunate that it has to come to this, as Senators have outlined clearly. Well done. It is long overdue.

I thank Senator Clonan for outlining what he did. It cannot be easy to stand up in the House and tell a personal story like that. I know how much it has affected him and his son. I thank him for giving that insight to us.

Parents have said that scoliosis squeezes the life out of their children as they wait for treatment, be it surgery or not. The issue has come up many times. Early detection, diagnosis and treatment, which I hope will come from this Bill, are important. For far too long, hundreds of families living with scoliosis have felt ignored by the State. Despite promises made in, I believe, good faith by the then Minister, now Tánaiste, in 2017, Children's Health Ireland has failed to provide the focus required to address the waiting lists. People, especially children, who have scoliosis deserve to be prioritised. Their unnecessary ongoing suffering and premature deaths cannot be tolerated or allowed to continue.

We all know that delaying a required response to any problem does not help matters. The opposite is true. Delays have caused more suffering and we have seen cases where they have resulted in death. I am sure this Bill will be enacted and I have no doubt it will be. We are lucky that we have the Minister at the forefront of this. I know she will support the Bill. It is important that the State recognises that resources such as the €19 million allocated to alleviate the suffering of children are correctly and appropriately applied. That funding, no matter how well spent, was asked for and granted specifically to reduce the waiting lists. It is important that there is clarity about where it went and where it was spent. Regardless of whether it was spent on other areas of children's health, it is important that there is clear information about it. It should have been spent on helping to reduce waiting lists. I hope this Bill will ensure that happens.

As Senator Clonan said, it can take approximately 250 hours for a qualified nurse to train for spinal damage care and 18 months for a surgeon to complete higher specialist training. This is key. I may be moving to the second part of the Bill in this regard. The training, recruitment and retention of appropriate levels of suitably qualified staff have become a matter of obligation for the HSE. The HSE has already conceded this through the formation of a specialist spinal multidisciplinary team for the particular needs of those involved in scoliosis treatment and care. I am glad that the Bill will, in effect, compel the HSE to plan for, staff and maintain this level of staff in the HSE. We have seen in other areas in other public spending Departments that the focus can sometimes be put in jeopardy if areas in the HSE are changing or there are structural changes in the HSE. When this Bill is enacted, it will hopefully ensure that the focus has to stay on the treatment of scoliosis and that there will be a rights-based approach to treatment.

Aubrey McCarthy (Independent)
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I thank the Minister for being here and congratulate her on her new role. I thank Senator McDowell. I support this Bill. It is crucial legislation, which addresses the most pressing issue regarding what children are suffering. Listening to Senator Clonan and hearing what he has experienced have shocked me. I have heard that there are mild cases.I have also seen that timely intervention across the board is vital, but I hear that timely intervention is certainly not the case. With progressive scoliosis, timely treatment is vital. We are seeing this in my own area of Kildare and because I am a new Senator, people have brought it to my attention.

The Bill proposed by Senator McDowell and the rest of the Independent Senators would establish a specialised scoliosis treatment service under the HSE. Such a treatment service would make sure that there is proper oversight by the Minister for Health and that children and families will receive the treatment for which they have long been pleading.

There have been failures. I know the Covid pandemic brought about such failures, but I also believe the failures have come about through systematic mismanagement and a lack of accountability in the area. Despite the establishment of the spinal surgery management unit in 2024 and a 10% increase in spinal surgeries compared with 2023, waiting lists remain unacceptably high. Different numbers have been mentioned, with 233 people on the waiting list and the shocking figure of 15 children waiting for over a year. In addition, three people have been waiting for more than two years. Senator Keogan spoke about somebody waiting for 14 years.

As Senator McDowell highlighted, the crisis is not new. It was raised in 2017 and the then Minister for Health, Deputy Harris, promised that no child would have to wait more than four years. Those promises did not prove to be true, even though they were meant without malice. We need to make sure we have a scoliosis Bill that produces results on the ground so that children such as Senator Clonan's son Eoghan do not have to wait and are not looking to us as Members of the Oireachtas to rule on whether they should have treatment. I support the Bill and ask the Members of this House to do what we are meant to do, bring in legislation, support this Bill and pass it without delay.

Laura Harmon (Labour)
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I welcome the Minister for Health to the House, especially after her recent travels, and thank her for representing Ireland so well at the UN Commission on the Status of Women recently. Many of the points have been made and I will not get into repetition. This is very indicative of what we are hearing about health in general. When we think of health and the health service in this country, words that often come to mind are "battle", "barriers", "people travelling abroad", "waiting lists" and "trolleys". We need to change that imagery in the public perception. Many people were probably not aware what scoliosis was until recent years and until parents and children had to become almost full-time campaigners. Nearly everybody in the country is now aware of what it is and the issue at hand.

I agree wholeheartedly with this Bill and Senator McDowell's comments that it is unfortunate the Bill had to be brought here in the first place. I cannot put it as eloquently as Senator Clonan did about why the Bill is needed and the personal stories behind it, but he is right that this is not the fault of the specialists. This is very much a management and inefficiency issue. This country is awash with money. We are a wealthy country but it is about how that money is being spent and how we treat people in chronic pain who have debilitating conditions and disabilities. It is about restoring faith in our healthcare system and providing timely and effective treatments. It is about transparency, providing adequate resources and ensuring that the HSE is mandated to comply with specific guidelines. I welcome the Bill and think it is great it is being supported by the Minister. This is about collaboration, so it is about time we got on with it.

Eileen Flynn (Independent)
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I speak in support of the Health (Scoliosis Treatment Services) Bill 2024, which aims to create a proper national service for scoliosis treatment. It will make the HSE legally responsible for finding and treating people with scoliosis quickly. I do not want to repeat what others have said. I welcome the Bill and thank Senator McDowell and his team for bringing this important Bill forward. Last September, there were 249 patients on the waiting list, with 11 waiting between 18 and 24 months and seven waiting between two to four years to get this important operation. Like any other community, within the Traveller community, we have children with disabilities. About five weeks ago, I met a 16-year-old girl who just got diagnosed with scoliosis. I was sitting at my kitchen table listening to the young woman saying that she had scoliosis and did not know much about it. I wondered how this child got to the age of 16 without being diagnosed or receiving proper treatment. Now, she will have to go an adult hospital and be treated as an adult. That is unfair when she has been failed by the system. To be diagnosed at 16 years of age is appalling. For years, she was complaining with pains in her back and it was put down to kidney infections. We do not believe that would be the case if she was from the general population. We can talk about all the services in the world and say we want this fit-for-purpose service for young people and adults with scoliosis but there are no people to do the job. We do not have the resource to do the job. With the best intentions and supporting the Bill, where is the resource going to come from? I would like the Minister to answer this evening if that is any way possible because it looks to me like we will agree this Bill today, which is brilliant, but is not worth the paper it is written on unless there is implementation - it will just be broken promises again for the children with scoliosis in this country.

Patricia Stephenson (Social Democrats)
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We are talking about healthcare but it is important that we remember that this is very much a children's rights issue which was recognised by the Ombudsman for Children. As Senator Clonan explicitly pointed out in his intervention, it is a disability rights issue as well. I hope in this debate and in the eventual implementation of this Bill that there will be a framework of disability and children's rights at its core. We already heard this evening about the waiting lists. They have been going up since December and January. They are creeping up, although I recognise there is an increase in the output of surgery. Children lost their consultants so they do not have a named consultant. As a result, they cannot get onto the waiting lists and they do not have ongoing reviews by a trained consultant so they do not receive a correct diagnosis as early as they should. That means they are not treated in a timely manner, as we already heard. That children do not have orthopaedic consultants is mind boggling in a country as developed and wealthy as Ireland. It should not be accepted as the norm. I thank the Independent Senators for highlighting the children aspect but also the adult aspect. People are ageing out of children's services and might never have received any proper service as children. They are 18 and no longer receive children's services and have extreme challenges as adults, putting their entire futures on hold. I applaud the Senators because there is a huge cohort. They are not small numbers. As we heard, a lot of people do not need surgery as children.When they reach adulthood, they are not getting the correct care.

What we are seeing here, as we have seen in many disability rights issues in Ireland, is that parents, extended family members and guardians are being forced to become advocates. The scoliosis network was founded by two mothers who had children dealing with this. That seems to be the default. We rely on voluntary advocacy networks set up by parents who are screaming at the top of their lungs for what should be a basic right. Senator Clonan’s son is incredibly lucky to have him as a parent, but not all children might have parents who have the advocacy skills and are able to take it this far, to get elected to one of the Houses.

Tom Clonan (Independent)
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He would disagree.

Patricia Stephenson (Social Democrats)
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Not all parents have the time to get elected to the Oireachtas to advocate for their children. They do not have the capacity. They might have multiple children. They might be working several jobs. Those kids, because they do not have parents who can fight and shout for them, are falling through the gaps. When healthcare systems receive pressure from parents, and rightly so, it is the children with the quieter advocates who do not get heard. The consequences of that are often that the sickest children are left behind.

We have to face the reality that these children are being neglected by the State. They are wasting away in pain because of the lack of timely treatment, as has been highlighted. Because our waiting lists are so jam-packed and long, it is the children in the most extreme state who are getting treatment. They have to be more sick and more in pain before they get treatment, and that is just not the way it should be. We all know that. We all recognise that, sitting here and having this discussion.

We need to see the acceptance of this Bill, its correct implementation and, as we heard from Senator Flynn, the correct resourcing that is both ring-fenced and at the right level to address this issue.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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There are many different issues and I want to try to respond to everybody individually. If I do not, I will do so when I come back in on a different section because I respect and appreciate all the important points people have raised. I do not simply want to read out speaking notes or anything like that. I want to try to address the points properly.

It was very important to me to be here to listen to what the Senators had to say and to respond to this legislation. I know they will appreciate that I am doing everything I can to learn as much as I can about quite a complex area. I will know more about this two months from now, for example, but I am totally committed to it and I thank the Senators for recognising that. I am evolving in my learning and understanding about the intersection of some of the aspects and the complexity of it. Yesterday, in preparation for this, I met David Moore from CHI, who is the lead paediatric surgeon managing this. I also spoke to Mark Connaughton SC, chair of the paediatric spinal task force, yesterday evening.

I will address some of the issues Senators have raised. Regarding the task force, I will clear this up now. I have no view that it should be discontinued. It is a very valuable tool that has done very good work. I respect that some of the advocacy groups have chosen not to engage with it, although the invitation remains entirely open to them. I know that officials on the patient safety side of my Department are trying to engage in different ways with some of the other advocates, who are entirely entitled to choose their own means of engagement. I respect all of that. Nevertheless, the invitation to them is there. They met as recently as 12 March. I would have liked to attend but I was away for St. Patrick’s Day. I said to Mr. Connaughton that I would like, where possible, as long as I am not out of the country or something, to attend the next meeting of the task force, not to step on its toes or interfere with its work in any way but simply to use it as an opportunity to signal my commitment to the resolution of the issue over time, my deep interest in the area and the political support for the work it is doing. I hope that answers questions related to the task force. I would like to think we will get to the point where the task force becomes redundant and unnecessary because we will have built up both the capacity and the processes to make it redundant. That is an ambition, however, not a plan. It is an idea and an ambition.

I take a similar view to the Senators. I recognise the need for legislation and, of course, we are not opposing it.I wish it had not been necessary to bring it to this point, and I would like to get to a point where this legislation is not necessary.

This is a ridiculous and academic point to make but, nevertheless, I need to make it anyway. None of us here wish to make clinical decisions or judgments through legislation. That is not the purpose of the legislation, and I acknowledge that. It is important we get to the point where the system is functioning without the need for this legislation and we are not using it as an idea or as a precedent across the board to make clinical judgments. That is very much an esoteric point and not something to dwell on. It is simply a recognition that I wish it had not been necessary. We are trying to do the work anyway and I would like to get to the point where it is not relevant. That is really the boarder point I am trying to make.

I will address the issues in the order they were raised with me. I recognise, as Senator McDowell said, that not all patients who present need surgery. It is important for the broader public understanding that that is not so. As I understand it from speaking with medics in this space, that, say, of the 506, about 4% of the patients who present convert to surgery or are appropriate to surgery. Some 47% are discharged for different reasons. We want to identify the total population of people who are presenting with some form of spinal difficulty. I do not want to be too determinative in my language. What is the total population and what is the earliest possible opportunity for an appropriate intervention, recognising that in many cases it will not be surgery? It would not, as I understand it, be appropriate to perform surgery on a three-year-old child, for example. There is a period of growth that is necessary to allow organs to develop. A period of growth is necessary where braces, casts or minimal surgical interventions are much more appropriate than the ultimate surgery. I hope that broader public consciousness can be developed because I think the four-month thing that people have raised is sort of a distraction from the need to make sure that there is the earliest identification and the earliest appropriate intervention, and that that is maintained. My perspective as Minister is to focus on making sure the capacity is there and the organisation and delivery is there, and on making sure those are the targets. Has the population been identified? Is it consistently being identified? What are the pathways to that? It was correctly pointed out that there is a necessity for triage of the different levels of severity, and I agree with that. There has been good development and it can go further in terms of how that outpatient list is being conceived and managed, including the number of Saturday clinics. I can speak to the numbers more directly on that, but there were 11 Saturday outpatient clinics last year, which quite apart from anything else is exactly how the health system should work. Particularly for parents of children, it is much easier to enable families on Saturdays than any other period. I would like to see the continuation of that approach where those cases can be triaged.

It is also important to note that a number of the less acute surgeries have been moved to other facilities, Blackrock and Cappagh in particular. That capacity has been expanded, particularly in Cappagh, quite considerably. We need to conceive how we might consider the non-acute surgeries – the more routine surgeries – as an elective process within the paediatric system. We have not brought it into the elective system. We might consider how we develop the capacity in Cappagh and look at some of the capacity for more routine surgeries. I am thinking as well about the allocation of the theatres in the new children’s hospital, the expansion of orthopaedic surgeons we have more broadly, how they will need access to theatre and the best way that we can organise that. As Senators will be aware, there is good excitement about the prospect in the children’s hospital facilities. It is a major step forward. I just want to have at the side of our mind that we might need to also go down this road. It might be a valuable thing to do to increase capacity broadly and separate out this more elective concept from the more acute concept as being a pretty reasonable clinical thing to do.

Regarding the NTPF and the international arrangements, I respect the point Senator Boyhan made on the NTPF and I will consider it. While the arrangements that have been made in respect of New York and Great Ormond Street are not what one would want in the first instance, they are very much better than not getting this done.Where they are clinically appropriate, it is better to do it than not. I would much rather invest in anything that we can do to remedy the current situation. It is not, as Senator McDowell said, the model that we want entirely, but sometimes the perfect is the enemy of the good, and it is better to use these arrangements where they are appropriate.

It is also appropriate to recognise, as I understand better and better even in the short period during which I have been Minister, that not all cases are suitable for surgery, in part because of some of the complexity and the comorbidities that can present. I am not clinically qualified to make those sorts of adjudications, nor do I believe, with respect, that any of the Senators here are. We will have to strike a balance between the individual cases that are raised and the complexity and humanity of them versus the clinical advice we are getting. As Senator Clonan said regarding the respect we have for clinicians and the standard we want for them, how we manage those intersections over time will be important. I will respond and try to engage with every case that is brought to me but there will be cases where, although it is difficult to hear sometimes, surgery is not appropriate, due not to delay but to comorbidities. These can be complex cases. As I understand it, many of the cases in Ireland are more complex for different reasons and there is a higher incidence of complex cases. The routine cases should be higher in the broader population, and while it is best not to get into some of the reasons for that, there are very complex cases. I say that to recognise that the clinical response to these cases should be very individualised and bespoke but also very timely. Those are not contradictory ideas. The responses should be bespoke but, as Senators have said, they must also be timely. I totally agree with that.

On some of the funding issues that have been raised, including the €19 million, I hear what Senators have said and I will reflect on that. Of course, I have been told the additional resources have supported the hiring of more staff at Crumlin, Temple Street and Cappagh. They have also led to a fifth theatre in Temple Street, an additional MRI scanner, 24 beds and further routine activity at Cappagh. However, I will go back, having heard the Senators, and make sure I am satisfied that all of those things are so. If I am not satisfied that they are so, I will investigate and test it. As Senators are more than aware, there was also additional funding of €5 million in 2024 to hire more posts into spinal services. We are talking about 52 full-time equivalent staff, 14 of whom are now in post, so we have some spend yet to do. There are four consultant orthopaedic surgeons, two consultant paediatric anaesthesiologists, one consultant paediatrician with a special interest in paediatric neurodisability, which is an important complementary element to it, and a number of others, including a plastic surgeon, respiratory consultant nursing posts and so on.

I hear what Senators have said regarding the hiring standards and the higher specialist training in particular. There is the consultant applications advisory committee, CAAC, but I will check and reflect on that because we want consultants of the highest standard. It is difficult to recruit them in a timely way. CHI might have the funding for it, but to hire a specialist surgeon who is already practising in an international practice is a challenge. Let us respect that we want our specialist doctors to go abroad to get training elsewhere and to perform surgeries at a critical mass that is not necessarily available here and come back with their expertise. We are trying all the time to bring people home who have acquired better expertise in hospitals with a larger critical mass and more specialist training and are linked to particular research universities. These are good things for the medical system. We want to try to bring those back, but if we think about the hiring process plus the giving of notice and relocation, it can take a bit of time. That is not great and I would prefer if it could be done immediately, but that is the reality of it. However, I will be working with the task force and the Department to stay on top of this. It will not be for drift, on my part anyway, that it is not done.

Senator Clonan raised the risk management aspect of this. I thank him for articulating the experience of his son and family and the difficulties that delayed treatment presents in a very real and direct way, physically, mentally and on the total humanity of every individual involved.That is why Senators have brought this legislation and are focused on thisi ssue. More specifically, however, regarding risk management and clinical migration, I am, honest to God, really concerned about all of that and how it is done. The children who will be transferred from Temple Street and Crumlin hospitals will be the very sickest children in Ireland at that time. We will have discharged everybody whom we can safely discharge in the weeks leading up to that. That is why it is important not to do it over the clinical winter. I will test that and push it as far as I can, but we will not take any risks with it. We will be transferring the very sickest children, including children with congenital heart problems who are in intensive care and children with scoliosis surgeries. We will try not to do the scoliosis surgeries immediately before. We will try to approach it as intelligently as we can, but that transfer overnight in ambulances during that seven- to ten-day period has me awake already, never mind at the time. I am very sensitive to the risk management processes for it and I am thinking about it very deeply. The important point is that I am aware of it.

Senators Keogan and Duffy raised some really important, complex individual cases. Again, it is not for me, as a person who is definitely not a clinician, to be adjudicating or commenting on the individual cases, but I do hear the Senators. If they want to speak to me privately about them, they absolutely may do so.

I do not wish to read out speaking notes that Senators have heard before, but I wish to recognise that there has been considerable investment. On behalf of the people who are doing the work, I recognise the number of surgeries that have been completed and the number of interventions. I do so not on my behalf or the Government's behalf, but on behalf of the people working on this all day every day in Temple Street and Crumlin hospital. I was in Crumlin hospital yesterday and surgery was actively taking place, although, quite reasonably, I could not go to see it because people were working on it. I do not wish to have a sense coming from this debate that nothing is happening or that nobody is getting treatment, because that is simply not the case, as Senators are aware. It is out of respect to the people working in the system that we must recognise it is, in fact, happening.

We had a reduction in the waiting times for paediatric orthopaedics generally last year of approximately 15%, but it has increased in the early part of this year. I understand from speaking to the clinicians that there has been an increase in the acuity of some of the cases, which has meant that multiple surgeries or interventions have been necessary. That does have an impact on some of the times, lists and numbers. I am aware of that and I respect it, but I can certainly see, from my analysis of the numbers that are there and the investment that has gone in, that there is a trajectory that is moving toward reducing this in a planned way. We are nowhere near where we will want to be or any sense of removing the complete focus that needs to be there to ensure that children are getting the appropriate, timely interventions they need.

Nicole Ryan (Sinn Fein)
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I move amendment No. 1:

In page 3, between lines 16 and 17, to insert the following:

“Maximum waiting time targets

2. (1) Subject to subsections (2) to (4), the Minister for Health shall, in relation to the performance by the Executive of its functions under section 1, specify—

(a) priorities to which the Executive shall have regard to in relation to maximum waiting times, and

(b) maximum waiting time performance targets for the Executive in respect of provision of each of the following:

(i) in-patient services;

(ii) out-patient services;

(iii) planned procedures;

(iv) diagnostic testing.

(2) The Minister shall consult with the Executive before specifying priorities or performance targets under this section and, having so specified such priorities or targets, furnish details of these in writing to the Executive and the National Treatment Purchase Fund Board.

(3) Before specifying priorities or performance targets under this section, the Minister shall have regard to—

(a) the Committee on the Future of Healthcare Sláintecare report published in May 2017 and any revision or replacement duly made to the report by any subsequent report,

(b) best practice as respects maximum waiting times,

(c) outcomes for patients and recipients of health and personal social services likely to be affected by the priority or performance target that the Minister is considering specifying, and

(d) the effect that specifying the priority or performance target concerned would be likely to have on other services provided by or on behalf of the Executive.

(4) In this section, “maximum waiting time performance targets” means, as respects priorities specified under subsection (1), levels of performance by the Executive by which the effectiveness of the Executive in meeting such priorities can be measured by the Minister and the National Treatment Purchase Fund Board.”.

Michael McDowell (Independent)
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I am accepting the amendment.

Nicole Ryan (Sinn Fein)
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It is great to see the Minister in the Chamber again. I welcome her back.

This Bill is not just legislation, but a statement of our values as a nation. I thank Senator McDowell and the Independent Group for bringing it forward. It is a recognition that no child in Ireland should be left behind to suffer in pain while he or she waits for medical treatment, and it is an assertion that our healthcare system must be held accountable for the promises that we make to patients and families.Children with scoliosis have been ignored, left on ever-growing waiting lists and forced to endure unimaginable pain. This is not just a failure of our health system; it is a failure of governance, policy and our collective responsibility to protect the most vulnerable citizens. As everyone has spoken about the waiting lists, I will not repeat what has been said. These are not just numbers on a page; they are real children who are suffering while our healthcare system sometimes fails them.

The amendment I propose will give the Minister the power to set legally binding waiting targets to ensure no child is left waiting indefinitely. The targets are ten weeks for the first outpatient appointment and 12 weeks for an inpatient appointment. They are not just arbitrary figures; they were originally set out in the Sláintecare report, which outlined how Ireland could provide a world-class healthcare system. By making these wait times legally binding, we will ensure the HSE and CHI are held accountable.

The Bill is about making sure that scoliosis patients are no longer left behind. We found out today that behind these statistics and policy failures are real children and real people's families. I thank Senator Clonan for sharing his deeply personal experience. It is a real experience that highlights exactly what is happening to families across the country.

I want to highlight a case that has also been raised by Senator McDowell and others. It relates to a different but equally devastating failure of the system. A child in my constituency was diagnosed with mild scoliosis but her doctors warned that during puberty her condition would worsen and become moderate, which it did within a matter of weeks. Surgery is an option for her but, because she is still growing she would require multiple consecutive surgeries. In order to avoid this she attends multiple physiotherapy sessions every month, not to cure her condition but to slow its progression and manage her pain. The child has a medical card, yet her family must pay in excess of €300 every month for private physiotherapy because public services are unavailable. That is a significant financial burden, especially at present, for a lot of people. Her mother is struggling to keep up with the costs. The child has been on a waiting list for months for a medical consultation to see how she is getting on. It has been mentioned previously how this case highlights the broader issue of people who are often overlooked. I refer to those who are not yet in need of surgery but who desperately require medical intervention. They have been slipping through the cracks because there is no support for families in the healthcare system for the prevention of conditions requiring surgery.

We support the Bill. The amendment I propose offers a real solution. It introduces accountability, reinforces waiting time targets, and ensures that children suffering from scoliosis are no longer left behind. It is not just about politics; it is about basic human decency for many of these people. Every child in Ireland deserves timely care. The amendment puts a timeframe on the process and ensures timely, effective and compassionate medical care. Every family deserves a healthcare system they can rely on.

Seán Kyne (Fine Gael)
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With the agreement of the Minister, I propose we provide an additional 20 minutes to allow for further contributions on the Bill.

Lynn Ruane (Independent)
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Is that agreed? Agreed.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I want to clarify Senator Ryan's position. From my reading of the amendment, she does not specify the time as ten weeks or 12 weeks but she alludes to the Sláintecare target times. Is that correct?

Nicole Ryan (Sinn Fein)
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Yes.

Seán Kyne (Fine Gael)
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Reference has been made to outsourcing services internationally. The Minister has indicated that the money will be spent where necessary but, ideally, the treatment would be in this country.Reviews were carried out in the past, including, for example, the Boston review. Progress has been made on the recommendations of the Boston review into paediatric orthopaedics. Would the Minister like to comment on the implementation of the recommendations? Much progress has been made but some of the recommendations still remain to be implemented.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The external quality review conducted by the Boston Children's Hospital contained 27 recommendations, 23 of which have been implemented. One recommendation has been partially completed but cannot be fully completed until the move to the new national children's hospital - we need to talk about the name. A further recommendation cannot be commenced until the transition to the hospital is complete. One recommendation is currently overdue. It is due for completion in the first quarter of 2025, which is nearing its end. One recommendation is nearing completion. I will provide an update to the Senator on the outstanding recommendations.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Out of respect to the people who have been working on this, I wish to inform Senators that in 2024 a total of 513 spinal procedures were completed, a 10% increase on the 464 undertaken in 2023, and a 25% increase on 2019. As of 26 February this year, 87 procedures had been completed. Saturday outpatient clinics are taking place where new spinal outpatient referrals are being seen in addition to existing clinics. A total of 526 patients were seen between April 2024 and February 2025. Of those, 25 were added to the spinal surgery waiting list and 245 were discharged. We are going to increase the number of patients being seen in the coming months. I want to give a sense of the proportion of those discharged versus those requiring surgical activity.

Victor Boyhan (Independent)
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I do not want to let the opportunity go without thanking the Minister for her very productive engagement. It bodes well for us. We, on this side of the House, thank her and acknowledge and echo what she said about the people on the front line of the health service whom the Minister is dealing with and witnessing every day, who are doing important work. We must acknowledge that as it is very important.

The level, depth and sincerity of the Minister's engagement and her openness to engage are something we do not see every day in the Seanad. I have been here for ten years. I acknowledge that because it is important. As a result, there was a relatively smooth transition and ten Stages of a Bill were dealt with in a very short time. I again thank the Minister. She is a very busy person - we are busy too – but she extended the time for the debate and we were able to complete it today. On behalf of everyone in the House, I sincerely thank her for the type of engagement we had and for the intelligent responses she gave. She did not come in and read scripts; she really engaged and got a sense of what people in this House were saying. I acknowledge that.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I thank Senator Boyhan.

Lynn Ruane (Independent)
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When is it proposed to take Report Stage?

Seán Kyne (Fine Gael)
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Next Tuesday.

Lynn Ruane (Independent)
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Is that agreed? Agreed.

Lynn Ruane (Independent)
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When is it proposed to sit again?

Seán Kyne (Fine Gael)
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Tomorrow morning at 9.30.

Lynn Ruane (Independent)
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Is that agreed? Agreed.