Health (Scoliosis Treatment Services) Bill 2024: Second Stage

Senator Michael McDowell

I move: "That the Bill be now read a Second Time."

This Bill is brought about with the aim of achieving accountability and performance and by reason of a crisis that has emerged regarding the provision of surgery for scoliosis victims in the State. There are other people with spinal conditions, such as spina bifida and others, which are also similar in the problems and challenges the people who have them are confronting. The Bill is simple. Paragraph 1 reads:

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 simple proposition, that there should be an identifiable national service. Paragraph 2 states:

It shall be the duty of the Health Service Executive to provide and make available adequate resources for the carrying on of the service, including the retention, engagement and remuneration of specialist surgeons, clinicians, medical practitioners, nurses, physiotherapists and other therapists, and treatment facilities including surgical facilities, as are necessary to enable it to comply with its obligations under section 1 to the highest standards and in the most timely fashion.

I want to emphasise that the purpose of section 2 is to create a positive statutory duty for the health service to deliver on the obligation in section 1 and to make it actionable if it fails to do so. Section 3 states the HSE can comply with its duty at hospitals and centres within the State or outside the State where necessary. Section 5 states that the HSE "shall every four months or more frequently, commencing three months after the passing of this Act, furnish to the Minister for Health a report and survey under section 6". Section 6 provides:

The report and survey provided for in section 5 shall include an up to date analysis of the need and demand for scoliosis services to be provided under section 1, the time periods within which such services, including treatments are intended to be carried out, whether the resources to be deployed in the provision of the services are sufficient, and any delays anticipated in their provision, whether guidelines issued by the Minister for Health under section 8 are being complied with, and up to date information as to waiting lists.

Section 7 provides that the Minister for Health shall be obliged to lay all the reports received by him under the previous section "not later than 14 days after their receipt".

Section 8 states:

The Minister for Health shall ... having consulted with the Health Service Executive, issue and publish guidelines for the time periods within which services provided under section 1 and 2 are required to be provided in a timely or most timely fashion, and it shall be the duty of the Health Service Executive to comply with such guidelines.

Section 9 provides that those guidelines are to be laid before the Houses. Why is it necessary to introduce such a specific provision regarding one field of the HSE's obligations? The answer is very simply that it is now the best part of seven years since the Minister's predecessor, who is now Taoiseach, Simon Harris, indicated that the HSE was going to deal with all scoliosis cases with a maximum waiting list period of four months. I have no doubt he did that in good faith because I have no doubt he was told that could be done. What happened thereafter is a very sad departure from what was promised to parents and patients with scoliosis. I will not go into all of the stories that have been in the media but they are tragic in many respects. There have been deaths from delay. There have been permanent and irreversible damage in cases which are attributable to delay. There has been a litany of patients coming forward and their families seeking help and getting a most inadequate service. I have to factor into all of this the Covid crisis which interrupted the provision of medical services in the State but should not have done. Whenever we have a retrospective Covid inquiry, I do not believe what happened with NPHET regarding urgent medical services was correctly done at all. It was not appropriate to close down surgery for cases of this kind.

However, in any event, we now have a plethora of things happening. My good friend, and fellow senior counsel, Mark Connaughton, has been tasked, as of May of this year, to chair a task force to co-ordinate and encourage the proper provision of scoliosis and spinal services. There is an ongoing inquiry within CHI into this matter. There is an external inquiry and HIQA is carrying out an inquiry so there are at least three inquiries and one task force operating at the moment in this area. We read in The Irish Times on 5 May last:

Children’s hospital managers have been told [by the Minister] to extend the opening hours of operating theatres to allow for more operations on children with scoliosis ... Minister for Health Stephen Donnelly has instructed the board of Children’s Health Ireland (CHI) to allow spinal surgeons greater access to carry out operations [and] has also told the board to ringfence capacity for children who need spinal procedures.

Therefore, the idea that there should be a special service with ring-fenced resources is already accepted. I will explain where I am coming from on this. Normally, any legislator would be reluctant to start saying that one particular condition or medical problem deserves to have ring-fenced resources and specialist supervisory units. However, all the indications are that the Department of Health is deeply unhappy with the resources that have been applied to this issue. Between 2017 and 2019, there was progress and additional resources were put into it. Unfortunately, the €19 million that was more recently allocated to this to deal with the backlog does not seem to have succeeded in alleviating the delays. Thereafter, we have what we read happened in May, when the Minister personally had to intervene with CHI to tell it to open up its theatres and get on with the job.

We have also had problems in Temple Street with springs - whether they were authorised and whether it was appropriate or in any sense dangerous or damaging to use non-authorised non-CE mark medical implants of that kind. The story that has emerged, unfortunately, is that right across the board, the CHI board, instead of doing the day job, was busily arguing with the Minister about the reappointment of its chief executive, resisting efforts to appoint a new chief executive and effectively fighting with the Minister to retain the existing chief executive, who I will not name. Clearly, the Minister and his Secretary General want a new person in the position. They have made that clear but they have faced internal resistance from the CHI board. At the same time, we have this failure to deliver even the obvious step of extending operating theatre hours to facilitate the deployment of resources to deal with heart-wrenching cases of children whose condition is deteriorating.

The matter has been raised in the Dáil, in public and in the media. It is a high-profile issue. I am not trying to cash in on it in any political or opportunistic way. What I am here to do is to say that the last Government, in the person of the present Taoiseach, delivered a commitment to the Irish people that the waiting list issue would be dealt with. People speak of the present Taoiseach as a man full of promise. I hope he is a man full of promise in one sense, but I do not want him to be a man full of promise who is not actually delivering what he has promised. I noticed he has now intervened personally to say that he and the Minister are both now taking this issue very seriously and are both determined to get on top of it. Of course the Taoiseach feels some responsibility, having given a commitment of that kind in good faith, now that the HSE, CHI and the whole service in its entirety have failed a whole series of patients.

There is now a waiting list of 4,000. There are huge delays in getting even assessments done. When it comes to identified patients who need operative treatment, there are significant delays and constraints in the delivering those operative services to them.

I am not here to score points. I am not here to score points against individuals. People must realise that the HSE, the board of CHI and any other agency involved owe a duty to these children to intervene in a timely fashion. If there is a difficulty in doing that, the resources have to be ring-fenced - not squandered elsewhere, dissipated or set aside - to carry out that particular function, as the Minister has now acknowledged. If we have to get in foreign-based specialists to assist or if we have to send our young patients abroad for treatment, whatever has to be done must be done. To tell a child that the curvature of their spine can progress to the point where they can hardly breathe, their heart is compressed, their lungs are compressed and their condition has become inoperable due to delay is heartbreaking for the parents of that child but life-shortening and cruel to the child, who is not merely suffering all the consequences of scoliosis but also suffering pain and discomfort as a result.

People may ask whether it is a bit of a gimmick to come in here and say that there should be accountability of this kind. Is it a gimmick to say to the HSE that it will be actionable in the courts if it fails to deliver on this front? It will face claims by parents and children for the damage they have suffered by its failure to comply with a new service requirement set out in statute. If it fails to deliver on a statutory duty and is in breach of a statutory duty, there is a remedy and there must be accountability.

I am a bit sceptical about CHI for this very reason. The Minister indicated that he wanted a new chief executive officer. The board, by claiming that the old chief executive officer might have employment rights, has created a situation now that apparently, according to newspaper reports, the outgoing chief executive officer is to get exactly the same pay and the same conditions of employment to carry out strategic – whatever that means – functions within CHI. I do not know how similar the functions will be. This is not the right way to run a health service. It is not the right way to run CHI through the hospitals it is already managing.

As we speak, we are failing the children who are suffering from scoliosis and related conditions. This Bill is brought before this House in good faith to create a climate and structure whereby there is full accountability, there are consequences for any further failure and where although we have all these task forces, units, investigations and inquiries going on, the day job is to attend to the needs of these children. It is in that context that I am happy to move, on behalf of my colleagues, this legislation, which we were working on in March of this year, which we sent to the Bills Office on 8 May and which was made available to us to publish on 29 May. This is an urgent matter and it requires being dealt with urgently.

Acting Chairperson (Senator Maria Byrne)

Before I go on to our next speaker, I welcome Councillor Caroline O’Reilly from Meath and Councillor Daniel Pender from Carlow with their friends and family. They are guests of Senator Daly. They are all very welcome and I hope they enjoy their visit to Leinster House.

Senator Martin Conway

I too welcome the councillors, congratulate them on their re-election and indeed welcome their guests.

I fully agree with my good friend and colleague, Senator McDowell. It is regrettable that a Bill of this nature has to be brought forward. A group of people have been let down by the State. Commitments were made to them - I have no doubt they were made in good faith - but circumstances, bureaucracy, challenges and all sorts of things meant it did not happen. There was a pandemic, which lessons need to be learned from. We were dealing with something that was unique in our lifetime. Services were shut down. If there was another pandemic, one would hope services would not be shut down.

I am glad the Minister is not opposing this Bill going to Committee Stage. That is very welcome because it is important legislation. Hopefully, we will see a parallel process of dealing with the issue. I welcome the fact that the Taoiseach and the Minister are working together to ensure this happens. I have no doubt of the good faith of either of them in this regard. I think we will see a resolution. You never know - the Bill may not be necessary by the time it passes. I am hopeful that we will see a much fairer streamlined system in place to deal with these situations.

I have spoken to a number of parents of children with scoliosis. I have seen pictures of their feet and their backs. I have seen the dreadful pain and suffering that these young people - citizens of our country - are enduring. All resources of the State need to be deployed to deal with it. If we do not have the expertise in this country, I fully agree that we need bring people abroad to where the expertise is to deal with some of the complex issues. We need to leave no stone unturned to get to grips with this issue.

Sometimes it is necessary for this House to pass legislation that instructs the HSE to do certain things. Politicians give commitments in good faith because they are given assurances by officials, and they are relying on those assurances, so perhaps it is a good thing to put a legal requirement on a specific issue with the officials as well to get this dealt with.

I say to the parents of the children that everyone in this House wants the suffering to be eased, wants to see the treatment provided and wants to see it happen in a timely manner. There is not much else that I need to say except to commend colleagues at the other side of the House on tabling this Bill. Hopefully we will see action as a result.

Acting Chairperson (Senator Maria Byrne)

Before I move on to our next speaker, I welcome the Cathaoirleach to the Distinguished Visitors Gallery along with his guests Michael and Kathleen Barry and Michael Mulcahy. They are all very welcome and I hope they enjoy their visit to Leinster House. They are in very capable hands.

Senator Lorraine Clifford-Lee

I too support the Independent colleagues in the Seanad and commend them on tabling such an important Bill. Since my election to the Seanad in 2016, the issue of scoliosis, the lack of services for children with scoliosis, the delays and the suffering have been a constant topic of debate and conversation in these Houses. It is clear that these families and the children in particular have been let down by the State over a long period of time. As the mother of young children, I can empathise with the parents who see their children suffering on a daily basis, declining and having irreversible decline. I welcome the opportunity to debate and shine a light on these failures.

Ireland is a wealthy country. This should not be tolerated, notwithstanding the fact we had a pandemic to deal with. It should not be tolerated any further. I am glad significant progress has been made in the delivery of services. Of course, it is not enough. While even one child is suffering, it is not enough. It is a national shame.

I look forward to the Bill progressing and to ongoing engagement with the Minister and his officials. Nobody in the House wants to see those children suffering any longer. We want a fit and proper health service for everybody. I know that is what the Minister is working towards. While a small number of families are involved, they are very vocal. They have had to be very vocal over a long number of years because of the failures of successive Governments. It is to be hoped the Minister will be the Minister that will put an end to this and bring about some real progress in those children's lives. I look forward to engaging with him and colleagues across the House on this because it is an issue on which we are all speaking with one voice.

Acting Chairperson (Senator Maria Byrne)

I welcome Jacob Whelan from Deputy Alan Farrell's office. He is joined by Emiliano Del Vecchio and Marco Ghirardelli, who are both very welcome. I hope they enjoy their stay in Leinster House. They are in good company with Jake.

Senator Paul Gavan

On behalf of Sinn Féin, I very much support this Bill from the Independent Group. It is both necessary and very welcome. It is encouraging to hear the responses from the Government side, which clearly acknowledge there is a major problem here that has not been tackled to date. It is to be hoped there will be consensus on the Bill. That would be very welcome.

The scandal of long waiting lists for children with scoliosis and spina bifida is a long-running tragedy. These children deserve better. As was referenced, seven years ago, the then Minister, Deputy Harris, promised that no child would be waiting longer than four months for surgery. The fact is more children are on scoliosis-related waiting lists now than when he gave that commitment. Three quarters of children are waiting longer than four months for orthopaedic surgeries. Parents and advocates want a comprehensive, transparent and structured programme of work to be carried out. This should be done through an independent task force that includes them and clinicians in its reporting process. The reference Senator McDowell made to the audit is very worrying. In February, on the audit, the Minister said, "This is not going to be a piece of work lasting several months." Yet, here we are several months later and he apparently still has no answers as to when that audit will be ready. That is just another symptom of the failure that we are all here to talk about it.

I do not intend to speak for very long on this because, frankly, it is too important an issue to try to score points on. It is a comprehensive failure by the Government that has been ongoing for several years. We need change. The key point about the Bill is it will hold the Government to account in a way that has not been done to date. In the time we have left, it would be very difficult for the Bill to make its way through all Stages but it has our full support. It should have the full support of everyone in the Chamber. It is to be hoped the Minister will acknowledge the lack of progress. Looking at the figures for January of last year, 284 children were on the waiting list. Some 18 months later, 246 children are on the waiting list. The facts speak for themselves. This Government simply has not delivered for the most vulnerable children desperately in need of these spinal surgeries. This is after four years of the Minister being in charge of this process. It is not good enough. It is a legacy of complete failure. Let us hope we see a change and that change will begin this evening with support for the Bill.

Senator Victor Boyhan

The Minister is very welcome. I genuinely thank him for coming to the House. It is not always possible for a Minister to do so, as he knows-----

Acting Chairperson (Senator Maria Byrne)

Is Senator Boyhan seconding the motion?

Senator Victor Boyhan

I formally second the motion. I thank the Minister for coming because there are many demands on his time. I appreciate that.

The Health (Scoliosis Treatment Services) Bill 2024 has been proposed by the Independent Group. My colleague, Senator McDowell, has clearly laid out the parameters and objectives of what we are trying to achieve with it. It has ten sections and is generally pretty simple to understand and implement. Many Members of the Houses, by means of parliamentary questions and Commencement matters, have raised concerns about scoliosis. The Minister is aware of those concerns. The Taoiseach is committed to resolving the issue and has clearly stated he is committed. I do not think anything will be achieved today by somehow calling out people or waving a stick at them. The reality is children are suffering. Many people are suffering, but particularly children, due to the painful condition of scoliosis. Clearly, a parent or anybody who sees a family member suffering from scoliosis, and in agony and pain, wants help. We have to respond. We have not collectively responded fast enough despite all the promises. That is disappointing. There have been many setbacks and many reasons for those setbacks, but we have got to move it forward. That is the important thing.

The essence and purpose of the Bill is that:

That is a very noble, reasonable objective and purpose for any legislation. The essence of our Bill is accountability, as Senator McDowell said, on delivery of the treatment of scoliosis. What gets measured gets done. I am a great believer in that. What gets quantified and measured gets done or, at least, the focus on achieving and getting it done is more evident and obvious. It is not a bad thing to keep that sort of focus. The Bill demands ongoing progress reporting, which ties in with delivery and accountability. That is right, correct and proper. It should happen. We all know that early intervention with scoliosis is critical for anybody. Early intervention is critical for the outcomes of people with scoliosis.

As I said, scoliosis is a very painful spinal condition with other health-related complications. The parents of young children with it see that their spine is crushing against their lungs and pressing against their hearts, as Senator McDowell talked about. These are stories we are hearing from parents, including the heartbreak of it all. Let us be clear that many children have died and may die if they do not undergo speedy surgery. It is critical. As I said, I do not think anyone is disputing the need to get a proper service and accountability around these issues. Children are waiting for years for surgery and their conditions are worsening while, quite literally, the life is being squeezed out of their bodies. That is what one parent said to me. Scoliosis is squeezing the life out of their child's body as they wait for an intervention. That is horrific.

The power is in these Houses. It is in the Minister's hands and in the hands of all of us collectively as legislators. There have to be resources, facilities and capacity, but we have to get something done about this. The power rests within the Houses. For the past few years, we have constantly had calls made by the Government side of the House and the Opposition for the Minister or previous Ministers for Health on the issue of scoliosis. The responses have varied. The circumstances then changed and things did not move the way we thought they might or as quick as they should. As I said at the very outset of all this, it is not a blame game. Too many people have suffered and are suffering. They need early interventions. That is the core of what we are trying to achieve. Stalling and delaying the treatment is adding more pain.

I understand that the Government is not opposing the Bill, but that is simply not good enough either. Time is running out for the parliamentary life of the current Dáil and Seanad. At the very best, we have six months. I hope we will have broad support but, more than that, that we will not just go away and throw it onto a shelf for the summer, when we all go off for our long summer holiday recess. That is well-earned. I have no difficulty with that, but let us not just throw it away. We are talking about people's lives and interventions. The Bill is measured, reasonable and fair.

It respects what was done in the past but acknowledges that we have to do something now. I hope the Minister and all people in government and in opposition will work collectively to make progress on this very important issue.

Senator Gerard P. Craughwell

I thank the Minister for being here today. First and foremost, I do not believe the Government is answerable for everything. The Government puts resources into the health services and it is up to the health services to deliver. Quite frankly, it is very difficult to understand how we find ourselves in the situations we end up in with the health service. There is money being pumped into it but services are not being delivered.

This Bill was brought forward by my colleague, Senator McDowell, out of compassion more than anything else for suffering children and families. It is totally and utterly beyond comprehension that we have allowed a situation to arise whereby children are suffocating because their spine is forcing them into a position where their lungs and heart are under pressure all of the time. When I say "we", I am talking about the citizens of Ireland. The Health Service Executive is answerable to the Government. It is rather sad that we have to bring in a Bill on one specific health issue. Are we going to have to bring in another Bill in the very near future on some other condition, such as cystic fibrosis? The truth of the matter is that the Health Service Executive must be made answerable far more frequently for the resources it is being provided with and how it uses those resources.

I have said the following to a Minister about another area. The officials, the HSE and various other organisations make decisions and the Minister gets fired if they are wrong. That is simply not good enough. We have now been told that there are consulting rooms in the national children's hospital that wheelchairs cannot get into. If that is true, it is going to be absolutely desperate for these families.

This Bill has been brought forward to put a focus on the issue of scoliosis. If we really wanted, we could pass this Bill in the Seanad next week and get it through the Dáil as quickly as possible. I hope that, in accepting the Bill, we are not giving false hope to the parents and children who are suffering that something is going to be done. It really is something that we must see quick action on.

As my colleagues Senators Boyhan and McDowell have said, I really appreciate the fact that the Minister for Health came here to take the debate himself. I also appreciate the fact that he is accepting the Bill but I would like the Bill to progress quickly and give hope to those families.

Acting Chairperson (Senator Victor Boyhan)

I call Senator Maria Byrne, who has six minutes.

Senator Maria Byrne

I thank the Minister for coming to the House to discuss this all-important issue. I acknowledge the fact that Senators McDowell and Boyhan have brought the Bill before us. I really welcome the Bill. It means an awful lot to me. I know some people whose children had scoliosis. They had to wait quite a while but the children eventually had a procedure and operation. I know of another person who was in an awful lot of pain when a young adult and had to wait quite a while but eventually had a procedure.

Much has been said about scoliosis services here today. At one stage it was said the delays were due to a shortage of appropriate theatres. I understand that not every operating theatre is suitable for scoliosis operations. At one stage people who were due to undergo less minor procedures were moved to other hospitals where there was a theatre available that was appropriate for other procedures. Could such a solution be considered to alleviate the waiting lists? In the past Crumlin children's hospital facilitated other operations and operations were performed in theatres in other hospitals.

Children and young adults can have scoliosis. Sometimes scoliosis happens to adults as they get older. All of these people are in awful lot of pain. Scoliosis can have serious health implications. I do not have to allude to the condition because my colleagues have raised the associated issues.

Finally, I thank the Minister for coming and look forward to his response. I believe the Government is determined to fix this situation. The sooner we alleviate the waiting lists, the better.

Acting Chairperson (Senator Victor Boyhan)

Before I call the Minister I welcome the guests of Senator Rónán Mullen, who are Eamonn and Orlaith Crowley, and their family. They are very welcome to the House. As there are no other Senators offering, I call the Minister. He has 15 minutes, if required.

Minister for Health (Deputy Stephen Donnelly)

I very much welcome the opportunity to speak in Seanad Éireann today about not just scoliosis services, which are the focus of the Bill, but more broadly around paediatric spinal services, including scoliosis, spina bifida and other conditions as mentioned by Senator McDowell. I thank the Senators for tabling the Bill. As has been said, the Government and I are not opposing the Bill.

Our goal is for everyone in Ireland to have access to the care they need when they need it. That includes complex spinal surgery, equipment in people's homes and primary care services in the community. Waiting lists for children's spinal services are simply unacceptably long. Children are waiting too long in too many cases for access to spinal surgery, assessment and diagnostics, including, for example, MRI under general anaesthetic. Children are waiting too long in too many cases for appropriate community-based, home-based and primary care-based supports before they go in for operations, in between operations and, indeed, post surgery.

We are taking short-term and long-term actions to do two things. We have to eradicate the current waiting list and we have to make sure that at the same time we are increasing the permanent capacity in the State to make sure these waiting lists do not come about again. A very serious body of work has been done and there is a very serious programme of work under way to both of those ends.

We have invested record amounts of money into children's spinal services. A record number of healthcare professionals have been hired across CHI and a record number of spinal surgeries are taking place, which is important, but it is still quite a long way short of what is needed. The same is true of the community-based and non-surgical supports. In the main, the Bill focuses on surgical care but representatives of the advocacy groups have raised with me the fact that community-based supports and non-surgical supports need to be improved as well.

In 2022, as soon as we were on the other side of the main waves of Covid I asked Children's Health Ireland for a comprehensive plan that would eradicate these waiting lists. CHI came back to me with a €19 million plan. The funding was mainly for spinal services, although it was to be used for some other things as well. I went to Children's Health Ireland and it assured me that by the end of 2022 that no child would be waiting longer than four months. On that basis, I authorised the €19 million in funding. As we are aware, that investment and programme of work did not result in the eradication of the over four month waiting list by the end of the year. That was deeply frustrating and disappointing to me, but my disappointment is largely irrelevant. What matters is the disappointment and the impact on the children and their families.

The investment has, nonetheless, made some important differences. It is not that it has not had any effect; it has. The funding just has not had the scale of effect that it was very much meant to have. A lot more healthcare professionals have been hired in Temple Street, Crumlin and Cappagh. In fact, more than 200 healthcare professionals have been hired with this money. That includes more nurses, consultant doctors, anaesthetists and radiographers. The investment funded a fifth theatre in Temple Street, which was opened last year.

It also funded a second MRI facility at Crumlin Hospital. Previously, it only had one MRI facility; it now has two. The investment has funded other activity as well, including at the National Orthopaedic Hospital Cappagh.

The agreed target of no child waiting more than four months was not met. However, there has been an important increase in activity. The number of spinal procedures last year and the year before that was well in excess of the 2019, pre-Covid-19 figure. That obviously matters. It also matters that the waiting list fell modestly last year. There is a waiting list of the total number of children waiting. The one we focus on most is the number of children waiting more than four months. It is worth saying that surgeons do not believe that this is the correct waiting list. They say that for some children, waiting four months is too long. For others, they say it is actually clinically appropriate for them to be scheduled for a longer period. It is worth saying that while surgeons accept the four-month waiting list, their view of the world is that it is more complex than that and that what we should be striving for is to have every child seen in the appropriate length of time. Nonetheless, greater than four months is a useful mechanism for mobilising the clinical resources of the State.

The waiting list is being validated. The new team in CHI is making sure it is in line with National Treatment Purchase Fund monthly reporting protocols. I am not going to provide figures this evening because when the figures are finalised, and they are pretty much finalised, it is important the advocacy groups are walked through the changes first. That will be done through the task force. I can tell the House that the preliminary figures I have seen are encouraging. They show a really important fall in the number of children waiting in excess of four months from 2022 into 2023 and now up to half way through 2024. It is my absolute intention, and Mr. David Moore's intention, along with that of the entire team in CHI, for that number to continue to fall this year. I want to pay tribute to those working in the services who are delivering these important reductions on behalf of these children.

Far more is required, however. On the basis of engagements I had with advocacy groups, I asked the HSE's internal audit function to review the allocation of the €19 million. As already stated, I wanted that report back before now. It is still being compiled, but I will have it shortly. It is clear, from detailed discussions I had with the HSE and CHI, that the majority of the funding intended for spinal services was allocated far more broadly across CHI than for spinal services. While I have no doubt the allocation of that money into other services has been hugely consequential and important for the children involved, the majority of that money was for spinal services. This matter was raised with me by the advocacy groups. I carried out an audit and I have engaged at length, as has been pointed out, with the board of CHI on this matter. I am not satisfied that the €19 million was allocated according to Government priority. While I have no doubt it has all benefited children, I am aware that the 206 whole-time equivalents who have been hired are not all working - and are not all close to working - in spinal services.

Despite the undertaking of a record number of spinal procedures during the past two years, the expected reductions in the waiting list have not happened. We would have expected, given the very significant increase in the number of surgeries being performed, that the waiting lists, while they have fallen, would have fallen by far more. The rationale for this is that there has been a big increase in the number of children being referred to the lists. To give colleagues a sense of this, in comparison with 2018, there was a 42% increase in referrals to the list last year. The number of surgeries has increased significantly. If the number of referrals had broadly stayed the same, the waiting list would be far lower than it is. There has been an enormous increase of 42% in referrals. To that end, we have to accommodate and work to that.

I have directed my Department, the HSE and CHI to progress several additional measures to ensure all of these children get the care they need when they need it. I am chairing monthly meetings involving my Department, CHI, the interim chief executive of CHI and the head of the spinal surgery unit to ensure that everything that can be done is being done. There is an ambitious programme of work, which covers Temple Street Hospital, Crumlin Hospital, Cappagh hospital, Blackrock Health, international outsourcing options, ring-fencing of beds, ring-fencing of theatres, ring-fencing of MRI capacity including under general anaesthetic, as well as seeking non-spinal orthopaedic surgeons to come in to free the relatively small number of surgeons who do the complex paediatric spinal work in order that they can dedicate more of their time to exactly that.

What I have already undertaken, as Senator McDowell outlined, is very similar to what is being called for in the Bill. When 2022 ended, CHI had clearly not met the targets it signed up to. In 2023, I met privately with the spinal surgeons - with no one else in the room - to find out what they needed. They said the best places in the world have dedicated spinal services. They referenced Stockholm and some services in the US and other places. There are not many of them globally. I said to them that we in Ireland must aspire to have one of the best children’s spinal services anywhere in the world. They said, if that is the ambition, it has to be a dedicated service. What they meant by that is dedicated theatres with dedicated theatre staff; dedicated anaesthetists; dedicated beds and wards; dedicated nursing and health and social care staff on those wards who specialise in paediatric spinal care; and dedicated post-acute teams so that when these children go back to their homes, they can be cared for by specialists. Essentially, that is one of the core things being called for in this Bill.

I met with the surgeons. We worked together. I asked them to design what a world-class, dedicated spinal service would look like. We want that to exist when they move into the new children’s hospital but, critically, we are not waiting for that. We need to put the service in place now in order that when we move into the new hospital, it will just be a case of moving the resources into a more modern service. This is what the task force is working on, and that is at the core of the meeting I chair every month. That is really what we are doing. We are asking questions such as whether services are being ring-fenced; whether the surgeons we have are being fully supported; whether they are getting as much of their time as possible to do children’s spinal surgery; whether we the ICU and the ward beds; whether we have the MRI under general anaesthetic available; whether we have the theatre available; whether we have the specialist nurses in theatre available; and, critically, whether we have the resources available so these children can go home as quickly as is clinically appropriate to get the supports they need at home. That is what we are really doing.

This is not something we are hoping to do in the future; it is very much live now. We have a hugely experienced consultant, Mr. David Moore, who has agreed to be the clinical lead on this. Mr. Moore and I are working together and speaking very regularly about what is needed. He has hired a specialist spinal team. That team is validating the lists, approving communications with the children and the children’s families and looking at ring-fencing resources. The interim chief executive of CHI is working night and day on this. She and I speak regularly. She is working very closely with the surgeons and staff in Crumlin and Temple Street hospitals to make sure this spinal service goes from strength to strength. The clinical lead is in place. The spinal management team he needs is in place. We are expanding the services they need.

I recently allocated additional funding to Mr. Moore to allow him to hire the extra staff he said he needed. We have allocated additional funding to facilitate Saturday blitz clinics in order that as many outpatients as possible can be seen.

I funded additional capacity as well. There are a number of children waiting for MRIs under general anaesthetic, which is quite a specialist procedure, so I have allocated extra funding for that. There is ongoing work in terms of outsourcing options and some very positive leads have been identified. Mr. Moore and I are working very closely on those. These are not partnerships I would hope we would need long into the future. We need to put partnerships in place with some of these hospitals abroad in order that we have the capacity to ensure the children who are waiting now can get all of the care they need. I want to share with the Seanad that as well as funding the surgery and clinical care for the child abroad, I have instructed my Department to make sure there is a proper end-to-end package so that family members can go over and will be accommodated abroad for whatever period of time is right for the child. Critically, the way we are doing it now is in collaboration with the spinal team in Children's Health Ireland in order that when children come back from an operation there has been a lot of communication between our own surgeons and their surgeons because inevitably these children may need follow-up care. Rods need to be lengthened and adjusted and there are other things as well.

The delivery of a transitional adolescent service is under way. This is something the advocacy groups raised with us and said we are not good at, which is the transition from the paediatric services to adult services. That is being taken very seriously.

As Senator McDowell stated, we have a very competent and dedicated chair for the new task force. He has met with many of the advocacy groups. He invited them all to meet him. There are four advocacy groups involved now with the task force. There are two that have not got involved and I fully respect their position on that. The task force matters. The task force is where we are listening very carefully to the advocacy groups. It is where we are showing the progress that is being made and it is the group I am relying on to tell me that certain things are working for families but other things are not working. It is through engagement with the advocacy groups that I met the spinal surgeons and the dedicated service is being set up. It is through engagement with advocacy groups that I have asked for the audit of the €19 million. It was they who raised the fact they did not believe the €19 million was being allocated as was intended. The task force has met twice and will have its third meeting shortly. The feedback I am getting from those who are involved in it is that they find it useful but, critically, it is not a talking shop. It is there to make sure they are at the centre of saying what is needed on behalf of these children and families, and we are being very responsive to that. As colleagues will be aware, there are multiple reviews under way.

These children have been failed by the State. There is no question about that. It should not be this way. The lists were falling before Covid. Covid fundamentally changed what happened and the lists went back up. The lists are falling this year and fell last year, but not by remotely as much as I want them to fall or by as much as was committed to. They are falling. We have a new approach in place now. We have a hugely experienced clinical lead who now has a team around him. He has hired in additional people. We have Cappagh, Crumlin, Temple Street and Blackrock hospitals involved and international hospitals working together to make sure every one of these children gets the care they need when they need it. There is no other individual clinical area where I have had to intervene to this level. There is no other area where I am chairing monthly meetings. I am doing it broadly on waiting lists and emergency departments but there is no other individual patient area where I have taken an active project management role like this. All I would say is that I am very wary of over-promising to these children and families. All I can tell colleagues is that everything I, we and the surgeons can think of is being done to finally provide Ireland with a dedicated spinal service that provides the best quality care, early interventions and timely access for these children. That is what we are building. The initial response has been very positive and the number of children waiting more than four months is now falling at a rate that is more encouraging. I look forward to soon being able to share the numbers publicly and with Oireachtas colleagues.

Acting Chairperson (Senator Maria Byrne)

Before I move on, I welcome the Minister's guests from Ógra Fianna Fáil from Wicklow. They are very welcome and I hope they enjoy their experience in Leinster House this evening. Senator Joe O’Reilly, too, has a group here, including his son Alexis O’Reilly and some of their friends. They are very welcome and I hope they enjoy their visit to Leinster House.

Senator Michael McDowell

I very much welcome the tone and content of the Minister's remarks. I did not come here to grandstand. I did not come here to exaggerate or exploit the obviously difficult situation that has arisen in respect of scoliosis and allied spinal conditions. The Minister has frankly admitted to this House that he asked the HSE and CHI how much money they needed and they said €19 million. He went and got that from the Department of public expenditure. I presume getting that funding was not so easy if my ministerial experience speaks fairly to me. It is very clear that the deal was done and the HSE and CHI got the money. The problem is that having got the €19 million, the Minister became concerned about whether those funds were being spent for the purposes for which they were requested and for which they were allocated by the Government. It turns out that the HSE's internal audit unit is carrying out a review. The final report is not to hand but the Minister is saying that from initial discussions, presumably with the internal audit review or people who are aware of their activities, that the majority of that funding, which was intended for spinal services, was allocated far more broadly across Children's Health Ireland. I will not use the word "embezzlement" but I will say that when a Minister goes to an agency and gets extra special money for a particular purpose of such gravity and urgency as this one, the very least that Minister is entitled to expect is that the money is spent on the purposes for which it was allocated. It is astonishing, and am not saying this to be critical of the Minister, that an internal audit seems to have uncovered that the majority of the money was spread elsewhere by an informal process of virement, which is the phrase used between Department heads of expenditure. Put simply, money provided for scoliosis treatment was taken and applied elsewhere. If I were the Minister - thank God I am not at the moment - I would demand accountability. I would demand accountability from the people who spread that money, used it elsewhere and did not report back to me in good faith that they were using the money I had secured with such difficulty from the Department of public expenditure and reform for this particular purpose. I would have expected them to have reported that back to me and I would demand accountability from them.

It is no surprise to me that heads should roll in the relevant area and it is no surprise to me that the confidence of the Government in the people who reallocated funds ring-fenced for that purpose has abated. There should be accountability.

The Minister mentioned Mr. David Moore, who has stepped into the breach. Many consultants prefer to keep their heads down and to let others take the political flak for what happens and does not happen. It is encouraging that a leading specialist of this kind has stepped up and taken responsibility for spearheading progress towards dealing with these serious problems.

I take on board in particular something the Minister said and the Bill was drafted with this in mind. It is not simply a children's issue because children become adults and their condition does not evaporate the day they go from child status to adult status. I am glad to know there is an emphasis on continuing treatment.

This Bill is designed to ensure continued accountability. I am heartened by the Minister saying he is chairing monthly meetings of this group. When I was Minister for Justice, we had a weekly meeting of all the relevant departmental people to study progress. The only way is for the political boss to ask what happened since last month and did we or did we not achieve something. It should not be a matter of sending in the internal auditors to find out what happened to the bulk of the €17 million. It should be something that is immediately apparent, and where something is going wrong, it should be immediately apparent.

I am grateful the Minister is not opposing the Bill, but on the substance of the Bill, there is not much of a difference between him and me. The Minister is ring-fencing and sitting on top of the people providing this service by way of monthly meetings. If that continues, and it will not continue forever, there is the prospect of real progress. I, however, always fear relapse. If the Minister moves elsewhere or is rewarded with a promotion or something else in the future, or if the people decide that different people should run the country, there should be something in place to ensure scoliosis and spina bifida patients and those suffering from related conditions are a special case. They need a dedicated service and there needs to be accountability when that service is not delivered. Reading the Minister’s helpful and candid remarks to the House in response to this Bill, it seems something went very badly wrong, that money went elsewhere and there was not accountability for that, or even knowledge of it, until the internal auditors had to chase down what happened to the money and found it had been applied elsewhere. That is a bit of a scandal and justifies the Department of Health being hard and exacting in seeking accountability from the people who were responsible.

I thank all Members who have contributed to the debate and I am glad the matter is going to Committee Stage without objection.

Question put and agreed to.

The Seanad adjourned at 7.54 p.m. until 9.30 a.m. on Thursday, 4 July 20024.

Seanad Éireann debate -
Wednesday, 3 Jul 2024