Dáil Éireann díospóireacht -
Tuesday, 20 Feb 2024

Vol. 1049 No. 7

Paediatric Orthopaedic and Urology Services: Motion [Private Members]

Deputy David Cullinane

I move:

That Dáil Éireann:

notes that, as of 13th February, 2024, there are 327 children listed as waiting on a scoliosis-related surgery with Children's Health Ireland (CHI), as compared to 312 in February 2017;

recalls the commitment given by the then Minister for Health, Simon Harris TD, in March 2017 that no child would wait more than four months for spinal surgery by the end of that year;

further notes that:

— 78 per cent of children are waiting longer than the Sláintecare target time for a paediatric orthopaedic inpatient appointment with CHI, and 81 per cent are waiting longer than the target time for paediatric urology;

— 84 per cent of children are waiting longer than the Sláintecare target time for a paediatric orthopaedic outpatient appointment with CHI, and 72 per cent are waiting longer than the target time for paediatric urology; and

— there is still uncertainty regarding the timeline for the transfer of services to the new Children's Hospital from the various Children's Health Ireland sites, and there are major concerns that a vast majority of children currently waiting for care will age out of paediatrics untreated;

expresses concern that:

— additional resources were made available to CHI to improve paediatric orthopaedic services, but members of the Oireachtas, members of the Government, patient advocates, and clinicians have expressed significant concerns regarding the use, extent, and effectiveness of this funding; and

— spinal surgical activity at CHI has been impacted by the voluntary leave of a consultant following significant concerns regarding return to surgery rates, infection rates, and allegations of inappropriate implantations at CHI Temple Street, the matters of which are subject to numerous reviews;

acknowledges:

— that the position of patient advocates is that existing reviews into CHI paediatric orthopaedic services are insufficient, too narrow in scope, and unlikely to have a satisfactory impact or reveal the true extent of the problem;

— the letter sent by the Minister for Health to patient advocates dated 6th February, 2024, which states that a paediatric spinal surgery unit will be established within Children's Health Ireland, that a lead has been appointed, and that the Minister "would like to convene a Taskforce"; and

— that the position of patient advocates is that a comprehensive, transparent, structured programme of work should be carried out by an independent taskforce, to include a comprehensive examination of the range of services related to scoliosis and spina bifida, care pathways, health care infrastructure, and the related governance of CHI;

considers that the Government has failed to deliver on its health and social care commitments to children, and that children's health care services are not operating at a satisfactory level as evidenced in the Sláintecare waiting list metrics;

demands that these systemic and historical failures are not allowed to continue as children deserve better; and

calls on the Government to:

— establish a taskforce which is independent of CHI management, which will be mandated to listen, engage, and act on the advice and concerns of parents, patient advocates, and clinicians, and include these stakeholders in its reporting process;

— mandate the independent taskforce to conduct a comprehensive review of scoliosis and spina bifida services, including transitional care, post-surgical specialist rehabilitation, and full and appropriate access to community services;

— deliver equitable and quality access to care that is evidence-based and in line with international best practice;

— ensure access to children's health services and treatments is provided on the basis of clinical need and not ability to pay;

— establish a sustainable public model of delivering specialist care for children with scoliosis and/or spina bifida, with increased public provision of care and a reduced reliance on private providers;

— make best use of international service options where clinically appropriate, and provide a wraparound care package for children and their parents/guardians, to include follow-up care post-operatively in Ireland as this is the main barrier for travelling abroad for children who can travel;

— resource and expand the paediatric orthopaedic elective care centre at the National Orthopaedic Hospital Cappagh, including provision of paediatric critical care capacity to support complex surgeries and children deemed clinically complex;

— assess a suitable location for the provision of an elective paediatric urology service and deliver such a service; and

— establish a permanent engagement process with patient advocacy and parent groups with lived experience, such as Spina Bifida Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network and others, at senior management level following the work of the taskforce.

I want to first acknowledge the perseverance of children with complex orthopaedic conditions, and their parents and advocate groups. I welcome the dozens of them who are in the Public Gallery, including many children with spina bifida and scoliosis. I think it is an understatement to say that those children and their families have struggled for many years, and continue to struggle to get access to fair healthcare for their children. Despite setbacks, broken promises, a lack of action, cancellations of surgeries and long waiting lists, they have never given up. The children have not given up, and the parents have not given up because they cannot afford to. They have to continue to advocate for their children.

The experience of these children and their parents has been one of real frustration. I am sure the Minister will accept that. It has been one of poor communication, disjointed services, a lack of pre-operative and post-operative care, and unequal access to care. For those children who cannot get access quickly enough in the public system, what they see are some children who can access Blackrock Clinic and others much more quickly because they can pay for it. That is a real shame on all of us.

One of the people we are joined by here today is T.J., who is 18 years of age and from Tullamore. He spent years on a CHI waiting list. He waited so long that his scoliosis became inoperable. That is the point I am making to the Minister. If T.J. came from a wealthy background that simply would not be the case. Despite all the countless motions and statements from Government Ministers, in the words of the Ombudsman for Children, all these families have got from Government so far was a litany of broken promises. The worst broken promise of all was made by a former Minister for Health, Deputy Simon Harris, who seven years ago made a very public pledge that no child would have to wait longer than four months for surgery. The sad reality is that three quarters of all children are still waiting longer than four months.

When Deputy Simon Harris made that commitment, there were 312 children on scoliosis waiting lists. Today, the number is 327. Surely, the first thing the Minister should do is acknowledge that. He has not done so in the amendment he has put to our motion today.

Despite all of these challenges and despite the frustration, the parents have made very reasonable asks. I have engaged very closely with advocate groups and parents of children over the past number of weeks and months in crafting this motion. One of the biggest problems that came up in all of the reports and the debates we have had - we have had far too many of them in this House, where we talk about it but there is no action coming from it - is the lack of engagement and consultation with families from Children's Health Ireland but also from Government. They want Government to listen to and engage with them but they also want Government to act on the concerns of parents, guardians, advocates and clinicians about the extremely long waiting lists for those who are seeking serious and urgent care.

I acknowledge, in a letter the Minister sent to some of these groups but also in his amendment to his motion, that he talks about a task force. However, the motion I have tabled today sets out the parameters the family want the Minister to agree to for them to have confidence in the integrity of any task force. Trust has broken down, and it is understandable, given the years of frustration. That is understandable. They want to know the Minister is serious about a task force. They want to know the task force will be comprehensive, and that it will involve a comprehensive examination of the full range of issues related to scoliosis and spina bifida, care pathways, healthcare infrastructure and governance issues at Children's Health Ireland. Above all, they want the task force to be independent of Children's Health Ireland. I will repeat that to the Minister again because it is not contained in the amendment he put before the Oireachtas here today. They want it independent of Children's Health Ireland.

I have said it to the Minister already, and this should be no surprise to him or anybody else. We have clearly failed all of these children for far too long. We do not have the pre-operative care services we need. We do not have the post-operative care services we need. We still have children who are waiting in agony for years on end. They were outside the Dáil here today, having travelled from Donegal, the west of Ireland and the south west. They came here, many of them in pain, to tell their story for all of us to do what is right.

I am afraid I cannot support the amendment the Minister has put to our motion here today. He had an opportunity to accept the very reasonable asks that are being made by these parents. I think the Minister's reluctance to do so feeds into a real frustration they have. All I can say to the Minister is that I will never give up on those children and their parents. I want them to be front and centre in how decisions are made and I want a comprehensive plan that once and for all deals with the real challenges those parents and children have.

Deputy Pearse Doherty

I thank Deputy Cullinane for tabling this motion today, and for the solution and plan he has brought forward on this. More so, I thank the children who, as Deputy Cullinane mentioned, made a long journey - some in pain - to be here with us today. I genuinely hope this is the last time we ever have to go outside the gates of Leinster House and look at dozens of children, some of them in pain, asking us as politicians and asking the Government, begging it - as one wee girl held up in a homemade placard, to "Stop Our Pain".

That is the strongest message that could be given to this House today because they have battled, and their families have battled, every single day. We know that for children with disabilities, it is a battle a day. It is the most common phrase you hear from families and children with disabilities. For those who have scoliosis and spina bifida, it is a very real, lived reality, day in, day out. Deputy Cullinane outlined how things have deteriorated over the past number of years. It is impossible to describe some of those journeys and the individual stories they told us, with operations being cancelled, delays, operations not being successful and then having to wait years on end.

We had the commitment. We had the commitment in 2017, which was a very clear commitment that no child would wait for more than four months for treatment of scoliosis. That was seven years ago, and things today are worse, not better. Waiting lists are getting longer, not shorter. Over three quarters of the children are waiting more than those four months that Deputy Simon Harris talked about, another broken promise with devastating consequences for the lives of children the length and breadth of the country, who came here today from Donegal, Waterford, Galway and all over.

Children deserve better. They deserve no more broken promises. Sinn Féin has tabled a motion today not just on its own behalf but after engagement with parents, advocates, medical health professionals and social care services about the plan that is needed and the way forward to make sure that what we have - where children are coming here and saying "Stop our pain" - never has to happen again.

The Minister and the Government need to do the right thing. They need to stop breaking the promises they make in here. They have a pathway that is laid out to them by Sinn Féin and I urge the Minister to withdraw his amendment, support our motion and start to make the decisions that are needed for all of these families and children the length and breadth of this State.

Deputy Pauline Tully

This motion outlines the stark statistics pertaining to the long waiting lists for children who require orthopaedic surgery. Behind every statistic is a child from a toddler to a teen, who is waiting in pain when they should be enjoying their lives. As a parent, I would do anything for my children, and the parents here are doing everything they can for their children but it is like banging their heads off a brick wall.

They are watching helplessly while their children endure pain and are unable to live their best lives. It is affecting their education and their ability to socialise with their peers. It is preventing them from living their best lives and enjoying their childhood. Due to these delays, the Minister is creating a level of dependency. He is ensuring that operations will be more complex due to the complications that arise as a result of the delay in performing surgery. Children are at risk of losing limbs, of there being irreparable damage, and of having constant and lifelong pain. This needs to be addressed without delay. In discussions we have had with parents and advocates they have told us that what is required is a comprehensive, transparent and structured review of orthopaedic services. This needs to be carried out by an independent task force with them and with clinicians, but independent of CHI management. That is important. It has to be a transparent task force. It is time that this Government began to engage with parents, advocates and clinicians and listen to their concerns. The Government needs to start acting on these concerns. It is way past time for children to be put first. The Government must commit to resource and expanding the paediatric orthopaedic elective care centre at the National Orthopaedic Hospital in Cappagh. It needs to deliver a centre for elective paediatric urology services. It is way beyond time for the State to put children first. They deserve better.

Deputy Réada Cronin

I was out knocking on doors in Kilcock over the weekend. I met a lovely older lady in a lot of pain, who was waiting for an operation for a new knee. We got talking about the national scandal of people in pain waiting, waiting, and waiting. I told her about this motion and about the lovely day I had in my constituency office a couple of years ago with David Cullinane when we met children with scoliosis. As it happened, I had met one of them in Prosperous the day before. While Elisa has had her scoliosis operation, she is now waiting a year for a sleep study so that she can have the orthopaedic work that she needs, post-op. She is still waiting, waiting and waiting.

Anyway, I took the bull by the horns. I asked this woman if she would be willing to wait longer for her operation so that children with scoliosis would not have to wait. She said of course she would. It is a no-brainer. Of course it does not apply because the either-or scenario does not arise. However, my conversation with that lady confirmed two things for me. The first is that in the general population, people are disgusted at the way children are being left in pain with their organs crushed due to the state of their spines. They are in an agonising level of pain because of the state of the health services on the watch of successive Fianna Fáil and Fine Gael health Ministers. Second, it showed me that social and intergenerational solidarity is still so strong. It is strong despite the fact that the powers-that-should-not-be continually pit the generations and other sectors of society against each other. People are sick and tired of waiting and are sick and tired of seeing their children and grandchildren waiting for the basics in health services, in this case, for a spine that is not crushing their children's organs. They want change, not change for the sake of it, but change for the better.

I want to recognise the outstanding and compassionate work that my colleague David Cullinane has put into these children caught in this nightmare of suffering. David is not a glory seeker. He wants to get to work on these children because he knows they cannot wait any longer. I want to welcome Lisa and Eddie from south Kildare who are in the Gallery and also my constituents, Úna Keightley and her son Seán. This is your Dáil, Seán. It is your health and your future we are discussing. That starts with political priorities and in Sinn Féin we will prioritise you.

Deputy Donnchadh Ó Laoghaire

I commend the work my colleague David Cullinane has put into this motion. I say to the families, parents and advocates who are present here today and outside the House that I hope it gets widespread support in the House.

In 2017, the Minister, Deputy Harris, promised that no child would be left waiting for longer than four months for surgery for scoliosis and spina bifida. The Government has utterly failed to meet this promise. Not only has it failed to meet this target - from an already unacceptable level - but waiting lists for scoliosis-related surgery have now got worse than they were when that commitment was given. It is now seven years later and the Government has no answers for these children and their parents and families who are left waiting. It is simply unacceptable. The Government must now listen to, engage with and act on the concerns of parents, guardians, advocates and clinicians about these outrageously long waiting lists. They want a task force that is transparent, independent of CHI and empowered to implement a plan to improve services. This includes a full suite of care from pre-op to post-op, transitional care, specialist rehabilitation and full and appropriate access to community services. We are calling on the Government to resource and expand the paediatric orthopaedic elective care centre at Cappagh and to deliver a centre for elective paediatric urology services. We must not see any more broken promises from the Government.

I spoke to a number of these children and their parents outside. God, they are beautiful children and their parents must be so proud of them. They are cheerful and stoic and happy to talk. However, let us not forget the pain they are in and the fact that they have had to make the effort to come here. None of those parents or children want to be here on a Tuesday evening in February, but the situation has got so bad that things need to be brought to a head. Nobody wants to be in this situation. It is the responsibility of the Minister, his Department and the Government that these families have felt this to be necessary and that we have felt it necessary to propose this motion. I regret that the Minister has tabled his amendment. I hope he will reconsider it. Most of all, I hope he can say something in five minutes' time that will give some confidence to those families that things are going to get better, because the way things are now is just not good enough.

Deputy Seán Crowe

In my opinion, leaving a child diagnosed with scoliosis to languish without the medical and surgical intervention they require borders on the cruel. We know that early intervention and treatment for children with scoliosis is paramount for preventing severe complications. If left untreated, scoliosis can lead to debilitating spinal deformities, respiratory issues and chronic pain. Allowing waiting lists to get as long as they have is not only hurting children but also their families. Parents look on helplessly as their children slowly become more and more impacted, first by the unnatural posture and then the agony, torment and chronic pain that no child or adult should have to endure. They even have trouble catching their breath. All too often, they are left with no option but a wheelchair, with the very real prospect of never walking unaided again.

Timely interventions like bracing or surgery can halt or correct the progression of the curvature of the spine, thereby ensuring normal spinal development and preventing long-term disabilities. The key word here is "timely". Long waiting lists are not some political football. Behind those numbers are very real individuals whose quality of life is slowly eroded week by week, month by month. Children and their families deserve better. The Government has failed to meet the promise it made in 2017 that no child would be waiting longer than four months for surgery. It is beyond a failure. Waiting times are getting worse, as the Minister knows. What can we do? What are our choices here tonight? The Minister has a choice in that he can end the waiting lists and we can collectively agree to end this scandal and address the real challenges facing these families. The poster tonight said "Stop the Pain". We have it in our collective power in this House to stop the pain these families are facing. Collectively, Deputies of all parties and none believe that this should be done. There is no reason we cannot support these families and bring about supports for these young people.

Minister for Health (Deputy Stephen Donnelly)

I move amendment No. 1:

To delete all words after "Dáil Éireann" and substitute the following:

"recognises that:

— waiting lists for spinal surgery remain too long, despite an increase in the number of procedures carried out in recent years; and

— the Government is committed to improving the waiting time for children seeking care;

notes that:

— the Government allocated €19 million of current and capital funding to help tackle these waiting lists by creating additional capacity;

— the €19 million investment supported an increase in the number of spinal procedures undertaken by our healthcare workers in both 2022 and 2023;

— 509 spinal procedures were carried out in 2022, and in 2023 464 spinal procedures were carried out as compared to 380 in 2019; this represents a 34 per cent increase and a 22 per cent increase respectively compared to 2019;

— at the end of December 2023 there were 78 active patients waiting over four months, which is a 13 per cent reduction compared to the end of 2022; and there were 231 patients waiting for spinal procedures, excluding suspensions, which is a five per cent reduction compared to the end of 2022;

— this Government will continue to invest significant funding to help reduce the amount of time children are waiting for important hospital appointments and procedures;

— Scoliosis and Spina Bifida were identified as a priority area, one of three priority areas, in both the 2022 and 2023 Waiting List Action Plans; and

— Scoliosis and Spina Bifida services will remain as priority areas under the 2024 Waiting List Action Plan;

further notes that:

— the Minister for Health intends to convene a Taskforce and invited all patient groups to input into the Terms of Reference;

— a dedicated Paediatric Spinal Surgery Management Unit has been established in Children's Health Ireland, which is focusing on the management and delivery of spinal surgery, including increased activity and further reducing the waiting lists;

— a Clinical Speciality Lead for Spinal Surgery, a Nurse Manager, and Business Manager have all commenced in post;

— work is underway on a paediatric spinal care programme of work which involves actions to tackle the current waiting lists, the design and transition to a dedicated Paediatric Spinal Service, and outsourcing options for clinically suitable children; and

— this Government is committed to seeing the new Children's Hospital opened as soon as possible.".

I very much welcome the opportunity to speak on this important debate on children's orthopaedic services with a strong focus on spinal services. I want to talk about what is working and what is not working and what more must be done. I want to acknowledge the children, their mums and dads, brothers and sisters, families and friends. I have been meeting them for several years, both in government and in opposition. I have to say that I do not disagree with anything I have heard from the opening statements this evening.

What is happening is inhumane. We, the State, over many years have failed far too many of these children. I assure the House I am not standing up to say that everything is fine because it is not. I am not standing up to say that everything that could be done has been done because it has not. I want to cover what has been done, where the ongoing failings are as I see them and what I believe can and must be done to address those failings. All of us in this House are united in our absolute determination to ensure that every child who needs these services will get them when they need them, whether that service is complex surgery in a hospital, a piece of equipment they need in their homes, access to a physiotherapist or occupational therapist in their communities or whatever else in might be in their homes, communities or hospitals. We must ensure they can get it when they need it. We all know that for far too many children in Ireland, that is simply not the case, and has not been the case, when it comes to complex orthopaedic care. What has happened is that the Government has invested record amounts of money in children's spinal services. The amount of surgery for these children is now at a record level and is being delivered by a record number of healthcare professionals. However, it is also absolutely the case that the waiting lists are far too long. The time the children have to wait is far too long. That is the case, as colleagues have pointed out, not just in the surgical lists, which is what we focus on most, but also for the community-based care that these children need before operations, at times when they may not be suitable for operations and after operations.

In 2022, I committed €19 million specifically for children's orthopaedic care with a heavy focus on spinal care. That money was for Crumlin and Temple Street hospitals in the main and, to some extent, for Cappagh hospital. In 2022 and 2023, I specified paediatric spinal care as one of just three clinical specialties in the waiting list action plans for those years, and I am doing the same again this year. I am not for a moment suggesting we are where we need to be but nonetheless, some important progress has been made by our healthcare professionals. With that €19 million, they have hired over 200 additional healthcare professionals, mainly in Crumlin and Temple Street hospitals. Those extra professionals include nurses, consultants, anaesthetists, radiographers and others. We have now opened a fifth new operating theatre in Temple Street, again funded through the €19 million. We recently opened a second MRI facility in Crumlin, again funded through the €19 million. Extra hospital beds have been added to both Crumlin and Temple Street, again from that €19 million. The amazing Cappagh Kids programme has had investment to do more of what it needs to do.

What has happened is that we have seen a very significant and important increase in the numbers of surgeries taking place in Cappagh, Crumlin and Temple Street hospitals compared to previous years because of these extra doctors, nurses and other healthcare professionals and because we now have the fifth theatre. In 2022, there was an increase of approximately one third in the number of spinal surgeries compared with the pre-Covid-19 figures. That is an important increase. It is not enough but it is an important increase. However, the reality is that far too many children are waiting. There was a very modest decrease last year in the total number waiting. It fell by 5%, which was not remotely enough. It is a very modest decrease. The number of patients waiting for more than four months is currently 78 and last year that number fell by approximately 13%. Again, that is not what is needed because it was only a modest fall but it was a fall nonetheless. Everything we are focused on doing now is about accelerating the reduction in the waiting lists and the amount of time that children have to wait.

I want to take a moment to acknowledge the significant work that the surgeons, nursing staff and other healthcare workers have done to increase the number of surgeries over the past two years. We all know we need far more but I have met those healthcare workers, as I know Deputy Cullinane and many others have. Good and dedicated surgeons, nursing staff and health and social care professionals are working harder to try to provide the care that is needed.

While the progress we have made in respect of the increase in the number of surgeries and the modest fall in waiting lists matters, it is nowhere close to enough in terms of what needs to happen. In 2022, when I allocated the €19 million, the forecast I got from Children's Health Ireland, CHI, was that it would bring the waiting list for those waiting more than four months down to zero and would do so quite quickly. It was on that basis that we allocated the money. As we all know, that has not happened. I have listened carefully to concerns that patients and families have raised with me. I have consulted clinicians about the allocation of that €19 million. I know that a portion of that money has been used to increase the numbers of surgeries. It is evident that is the case. However, concerns have been raised that all of the money may not have been allocated to orthopaedic and spinal surgery, at least not in the way that I and the Government intended and that all of us in this House would want to have seen. On that basis, I have asked the HSE to send its internal audit teams into CHI. I want a full account of the entire €19 million mapped against the intended purpose for that money.

Despite the record number of surgeries, what we have seen over the past two years is a record number of new referrals onto the list, which is more significant than many of us would have thought. For example, just last year, the number of children referred onto the spinal lists was over 40% higher than in 2019. That is a comparison between the levels in 2023 and 2019 and it is a very big increase. The increase has meant that while many more surgeries are happening and more children are being operated on, the waiting list has not fallen to zero and, in fact, the waiting list for those waiting longer than four months only fell by 13%.

There are several additional measures that I have directed my Department, the HSE and CHI to undertake. A dedicated spinal surgery management unit has now been established, focusing on the management of the service, increasing volume, ensuring patient safety and reducing waiting lists and waiting times. It is a cross-city unit between the various hospitals. We have a clinical lead. A very experienced orthopaedic surgeon has agreed to lead the service. We have a nurse manager and other supports in place to help this team. I have met the clinical lead to discuss the service and see where we need to go. After listening carefully to the orthopaedic surgeons, my direction to my Department and to the HSE is that we are now transitioning to a dedicated spinal service in this country. As the surgeons have pointed out to me, that is best practice in Stockholm and other places around the world. What do we mean by that? We mean a dedicated theatre or theatres. In those theatres, there will be dedicated nursing staff, anaesthetists and other theatre staff dedicated to the spinal service. It also means dedicated recovery beds, dedicated ward beds and dedicated ward staff who are specialists in spinal care. It is something we have not had. It is something that the consultants have told me in their view is international best practice and will ultimately provide the service we all want. I am allocating further funding this year to the clinical lead to progress that.

I also intend to convene the stakeholder task force referenced by Deputy Cullinane. I met some of the patient advocacy groups yesterday to discuss what they want to see, and the terms of reference they want, including independent chairs and other things. It was a constructive meeting and I am grateful for the time of those advocacy groups.

I acknowledge that the co-design group did not work. Unfortunately, it turned into something like a talking shop. None of us have any interest in that happening. We are going to have a very clear timeline and a funded programme of work. This task force will meet regularly to ensure that programme of work happens.

With the indulgence of the Ceann Comhairle, I will make a few final points. We have two important reviews under way: a HIQA review into the use of the springs, which we are all aware of, and the review of the international independent expert, Mr. Nayagam. From these, we are going to get recommendations on patient safety, spinal management, international best practice and what does and does not work. We will be acting on those recommendations.

I thank Deputy Cullinane and his Sinn Féin colleagues for tabling the motion. I acknowledge everyone present. This is an important debate. We are all absolutely determined to end the failure of these children and provide them with the care they need. Towards the end of this debate, the Minister of State, Deputy Butler, will be closing for the Government. I will be meeting the HSE board and the chief executive, and one of the things I will be bringing to them this evening is the feedback from around the House on the debate we are having.

Deputy Paul Donnelly

I welcome the families, including children and young people, in the Visitors Gallery listening to this debate. The Minister talked about ongoing failings. Seven years ago, it was promised that this would be dealt with within months, yet the Minister is standing here tonight talking about ongoing failings. That means he knows about them and that nothing has been done to help the children in pain. Three hundred and twenty-seven children have been forced to suffer in pain for years, watched by helpless parents and their families. The pain these children experience is so severe that it needs to be managed by strong medication. The parents are now worried about its long-term effects.

As has been alluded to, promises made more than seven years ago have been broken time and again. The Minister has acknowledged this by saying there have been ongoing failings to this very day. This leaves the children in pain, which is an absolute shame. To stand up here and say we know this has been going on and that children have been in pain and taking really severe medication to deal with it is unacceptable. The children who have come here to protest outside are in pain. That they have had to do so for years is an absolute disgrace. Children need the Government and the Minister to increase capacity and make full use of international options. Children with spina bifida need an elective paediatric urology centre. The Minister knows the waiting lists are a tragedy, and the Government needs to step up. It is simply unfair on the children, their families and their caregivers. All the Deputies in this House must support this motion to ensure parents and advocacy groups see children get the vital care they need.

We have choices. We are the people who have been tasked by constituents and the people in the Visitors Gallery to deal with these issues and ensure we look after their health, care and housing. It is up to us to ensure we deliver.

Deputy Maurice Quinlivan

I welcome the people in the Visitors Gallery. It was fantastic to meet the children outside today. These wonderful, uplifting children tell us they are in pain. Some had a sign stating Stop the Pain.

The Minister talked about a big list as if he were surprised. This is the case with everything that comes up in the HSE, for some reason. There is a big list in the emergency department in Limerick. The Minister seems to have been surprised by that as well.

To return to the motion, scoliosis and spina bifida are extremely challenging, not just for the young people coping with the conditions but also for their parents and carers, who are usually the same people. The conditions can make everyday life more challenging, including when commuting and attending school. While there are obstacles that can be overcome, it is imperative that patients be given quick access to the necessary surgery.

It was really uplifting to see the kids outside the door, but not to hear their stories about waiting for years and the references to what former Minister for Health, Deputy Harris, said seven years ago, namely, that they would not be waiting for more than four months. We are now in a crisis. The current Minister tried to dismiss the matter by saying he has given money, but there is a list. It is almost as if he did not anticipate the growing population or advancing technologies. In University Hospital Limerick, which is in my city, 28 children have been on an inpatient waiting list for more than 12 months. Three hundred and thirteen children have been on an outpatient waiting list for more than 12 months. I mention these figures to demonstrate that the excessive waiting times for scoliosis and spina bifida related procedures are not outliers but part of the overall problem with waiting times for both children and adults alike. They need to be addressed. We do not have a sense of urgency on the part of the Government, including the Minister. It should not be the case that children have to sit in the Visitors Gallery on a February evening when I am sure they would be much happier at home with their friends and families.

Deputy John Brady

I welcome the families, particularly the children, to the Visitors Gallery. It was great to speak to them outside, listen to the children and see them smile and laugh. However, behind the laughs and cheer there is severe pain. I know because I am the father of a daughter with scoliosis. She has a 45-degree curve in her spine. I know the pain she has to endure day in, day out.

Up until 2008, we had an early diagnosis procedure in place whereby a public health nurse went into schools and carried out a very simple check, the Adam's forward bend test. Due to cutbacks or austerity measures, this was abandoned in 2008. Now, early diagnosis is not happening for the likes of my daughter. In some cases, it would obviate the need for intrusive procedures such as surgery. Early diagnosis was not in place for my daughter. She had to endure pain and still does. Therefore, the State has failed in terms of early intervention and is now failing to ensure surgery is carried out.

It is absolutely atrocious that parents in this day and age have to bring their kids from the four corners of the State to converge here to demand that the Minister do something to ensure their children do not have to endure the pain my child endures daily. It is absolutely shameful for the Minister to stand up here and go blah, blah, blah, blah, blah. It is another talking shop. What people, including parents but more importantly children, need is action, not more pain.

Deputy Johnny Mythen

I commend all the campaigners who stood outside the Dáil today, especially the Byrne family from County Wexford. This motion has come about due to the failure of the Government to fulfil its promise to the children who suffer from spina bifida and scoliosis. The promise was that no child would have to wait more than four months for surgery. The Minister has said the State has failed the children affected by spina bifida and scoliosis.

The recent exposure of the alleged use of non-CE marked implantation springs demonstrates a serious fault line in the existing processing system and that children with the condition in question are not being treated in a fair, efficient and timely fashion. We know that time is the most essential and important ingredient in the whole process and often can save lives. As evidenced in the Sláintecare waiting list metrics, childcare services are not operating at a satisfactory level. Patient advocates state recent reviews show CHI paediatric orthopaedic services are inefficient, narrow in scope and unlikely to reveal the true extent of the existing problems. This is why stakeholders and Sinn Féin are calling for the establishment of a task force, totally transparent and independent of CHI, to delve into the CHI reporting process and mandate CHI to engage and act on the advice of patients, clinicians and patient advocates.

Enshrined in this entire process must be the principle of equal treatment for all children based on their needs, not the ability to pay. If the Government is serious about resolving the waiting list problem, it should make the paediatric orthopaedic elective care centre in Cappagh a top priority. Only by resourcing, expanding and increasing domestic capacity will the country be able to deliver a top-class centre for elective paediatric urology services. The 321 children currently waiting for scoliosis related surgery deserve a better service and a better chance to live their lives to the full. I appeal to all Deputies to support this motion and to the Government to withdraw its amendment.

Deputy Ruairí Ó Murchú

To use the Minister's language, we are dealing with children who have been left in inhumane conditions. He also said that he will not say that everything that could be done has been done. Once again, therefore, we are accepting that there has been abject failure. We have absolutely failed to deliver for some of the most needy of our citizens. Everyone mentioned the promises that were made by the then Minister for Health, Deputy Harris, in 2017 to the effect that every child would be dealt with, whether they were affected by spina bifida or scoliosis or in need of complex spinal orthopaedic surgery or whatever. We have failed abjectly.

It was fabulous to meet the children and their parents outside. I do not know how they keep going. Our requests are straightforward, including a task force that is sufficiently independent and can do the business. We know which resources we need. The Minister spoke about a dedicated spinal surgery service or management unit. We need to see it. We need to see timelines for delivery, because the people who need it are Ada, her mother Paula and the rest of the family who are here. There is also Kirsty Rose from Dundalk, whom I met and who I spoke to about Daisy and Layla. As time goes on and they spend more time on waiting lists, they worry that their conditions will become worse and that the possibility of an operation will become that bit more distant. We do not know what the long-term ramifications will be. We need solutions and timelines. We really need to stop the pain. None of this is good enough.

Once again, we have absolutely failed those families and children. We need to do better. I do not know how anyone that side of the House can say "We are offering solutions, but we realise that what has happened to date has not been good enough". We really need delivery. I do not like making these kinds of speeches. It is an abject failure when people have to travel to Leinster House to talk to politicians about these issues. We need to deliver for them, and we need to do so now.

Deputy Duncan Smith

I thank Deputy Cullinane and Sinn Féin for tabling this motion. I welcome the children and parents in the Public Gallery who are watching the debate.

Waiting lists remain a national disgrace. That has been the case for a long time. While the Government has made efforts to address them, the fact that they are so long should illustrate how those efforts have failed. Last week, the Taoiseach stated that waiting lists in Irish hospitals are going down. That is not entirely true. The fact is that waiting lists for children have not fallen. Children with scoliosis and spina bifida are waiting longer now than was the case four years ago. In 2017, the then Minister for Health, Deputy Harris, made the commitment that no child would be left to wait longer than four months for surgery. It is deeply concerning that a staggering 78% of children are enduring wait times longer than Sláintecare target times for paediatric orthopaedic inpatient appointments and that 81% awaiting paediatric urology services are similarly affected. The situation is equally dire when it comes to outpatient appointments, with 84% of children waiting beyond target times for paediatric orthopaedic services and 72% beyond target times for paediatric urology. The Government has a responsibility, not just because members of Government made a commitment, but because it is undoubtedly the right thing to do to ensure that children with these complex medical needs are seen and treated on the basis of clinical need in a timely manner through the public system.

It is becoming increasingly frustrating for me and for the parents whose children need these services to hear that when the new children's hospital is finally built, all these issues will be fixed. We cannot even get a nailed-down date for when that hospital will open. Let me remind the Minister that the cost of what is going to be the most expensive healthcare facility on the planet has skyrocketed to €2.2 billion. The pure incompetence on display across every aspect of the construction of this hospital is outrageous. Of course, I used the word "incompetence" to quote the Minister, Deputy Donnelly, who, in 2018, following news that the cost of the children's hospital was set to rise by a then €450 million, said that one could not make up this level of incompetence. I wonder whether the Minister still holds the same view.

The current state of paediatric orthopaedic and urology services is nothing short of a disaster. I already mentioned the unacceptable waiting times for essential procedures, but there is also a chronic shortage of specialised medical professionals. The HSE's recruitment freeze is certainly not helping to alleviate matters. The reality is that without action, the futures of multiple children are being compromised. The children are not only not getting the care they deserve; we are four years past the date on which the children's hospital - which, according to the Government, will address the deficit of care - was due to open. Seemingly, no one is willing to accept responsibility for this failure. Children are being left behind. That is a fact. It is a theme that crops up often with this Government, and it has been the case with Fine Gael in particular for a long time.

Whether they are young doctors or nurses, people are moving abroad for better conditions. Young couples are forced to live with their parents while saving for a home. Young people right across the country are being let down but no one is being let down more than the children with complex orthopaedic and urology needs. It is just not good enough that the Tánaiste acknowledges how poor paediatric care is by stating that the new children's hospital will mean that care will be worlds away from where we are in respect of the treatment of children. What is worlds away is needed right now. Why do we need to wait for the new hospital to improve care at that level and more important, why is care so poor that we are in such desperate need of this children's hospital? It is frankly preposterous that the children's hospital is seen as the only fix for the problems in care that the Government has allowed to accumulate over many years. It is worrying that we are being told to wait, particularly when we do not have a date for when the hospital will open.

Ultimately, these issues all come back to the Government's mismanagement and underfunding of healthcare services. When the Government announced the health budget for 2024, I spoke about the fact it had left many people afraid about what the next year would bring. National strategies are being starved of funding, and the lack of financial supports for the care of children has clearly not been addressed. That means these young people are suffering. I reiterate a point I made at the time. Health is not like any other area of Government responsibility. It is a demand-led service. It is the Government's duty to strive to meet demand, not to cut off or starve healthcare of supports, reallocate funding or rob Peter to pay Paul within the service. That is why we need to see action in paediatric orthopaedic and urology services. Clearly, as the families and children present will tell the Minister, the demand is there. Waiting lists have been growing for too long. With each missed appointment, each cancelled surgery, the health of these children is further compromised and the possibility of providing the kind of care that will help them and bring them back to some form of health moves farther and farther away.

We fully support the establishment of a task force that is independent of CHI management, comprised of parents, patient advocates and clinicians, as we believe it is one of the only ways we can ensure the deficiencies in our paediatric orthopaedic and urology services are addressed. A multidisciplinary approach would ensure that the voices of those directly impacted on by the shortcomings of our healthcare services are heard and considered when solutions are being provided. Parents bring first-hand experience of navigating the complexities of getting care for their children and clinicians can provide expert knowledge and the guidance that is clearly needed on best practice. This type of task force would ultimately lead to more effective and patient centred healthcare delivery for those children.

There is also an urgent need to address how reliant this country has become on private health insurance. Private health insurance cannot become a synonym for good healthcare. With waiting lists as long as they are, there is a perception that people need private health insurance because people feel that without it they might not get any care, especially the care they need. It has certainly become the case for paediatric and orthopaedic and urology services. The waiting lists children and parents are facing in these services have led to them feel that private health insurance is the only way they will get the care they need. The whole goal of our health policy at the moment is the delivery of Sláintecare, a universal single-tier healthcare system accessible to all and services free at the point of use. That is why it is extremely concerning that we do not seem to have any real movement in the delivery of the single-tier system. Progress aside, the fundamentals behind Sláintecare are a real risk. It remains silent on health insurance because the gamble is that once it is delivered, people will be so happy with the system that they will give up their private health insurance. We need a plan to deliver a proper, universal healthcare system and the two-tier system that currently exists is not the future of healthcare.

It is abundantly clear that the Government has failed in its duty to safeguard the health and well-being of children with spina bifida and scoliosis. We cannot allow these failures to persist and that is why I fully support this motion. It is an important step in the right direction. We need to see the establishment of an independent task force, free from the influence of CHI management. We need to ensure equitable access to evidence-based care regardless of socioeconomic status and reduced reliance on private providers.

We need a commitment from Government in the context of ongoing engagement with patient advocacy groups to inform policy and decision-making. The new children's hospital cannot be a shield that the Government rolls out to deflect away from the fact that the levels of care for children in this country are simply not sufficient right now. We also finally need to see accountability with regard to the cost of the national children's hospital and an answer from the Minister about whether he believes, as he did in 2018, that the management of the delivery of the hospital is a display of incompetence.

Deputy Róisín Shortall

We very often hear reference made to the fact that seven years ago the then Minister for Health, Deputy Harris, gave a commitment that no child would wait more than four months for spinal surgery. It is worth reminding ourselves of that fact and the empty promise that was made. The same commitment was given by the current Minister for Health two years ago, as I am sure he will recall, but the commitment has never been honoured. In fact, the situation has only got worse. We now have 327 children on the waiting list for scoliosis surgery. That is a 5% increase on 2017, when the former Minister, Deputy Harris, first announced his target. All these years later, what is the target for children with scoliosis now? It seems that this Government is simply incapable of getting to grips with this issue. Last year, the Taoiseach said that he wanted Ireland to be the best country in Europe in which to be a child. Those words ring very hollow for children with spina bifida and scoliosis.

The Government’s inaction and its inability to get to grips with this issue have a direct impact on the health of the children to whom I refer. It is not abstract for them or their families. The longer these children wait, the more their spines curve, the more their organs are crushed and the more their chances of survival diminish. This is why real strategic action is required. Such action is well overdue. This cannot be allowed to become a perennial problem. This Government should be doing everything possible. If necessary, it should identify other sources of funding. There has been much criticism of the different directions in which funding is going. There is a great deal of money available in this country. If the matter we are discussing is not a top priority, I do not know what is. After all, we are talking about some of the most vulnerable children in our society. It is frankly unforgivable that they are being denied their most basic rights. In a rich country like ours, which has a surplus of €8 billion, there can be no justification for this failure to provide the necessary services. Parents and children should not have to fight and plead for treatment, yet that is exactly what they have been forced to do for years.

Again and again, we are both disturbed and moved by the plight of children waiting years for surgery. They share their stories in an effort to secure treatment and surgery and advocate for others but they should not have to do that. They should not have to take to the streets again. This Government has left them with no other option. These are some of the most medically challenged children in the country. They have been repeatedly failed by successive Ministers for Health and CHI. Trust has completely broken down since last year’s revelations about spinal surgeries in Temple Street. Many thought that scandal would surely be a catalyst for change - for an accelerated response - but, regrettably, that has not happened.

At the beginning of this month, we learned that the independent review into Temple Street had been widened to include 17 further cases of concern. While this will inevitably delay the completion of the report, it is very disappointing that no updated timeline has been provided. I ask the Minister to do that tonight. Last week, I received a reply to a parliamentary question from the Minister about this matter. He seemed to be using the independence of the review as some kind of excuse for not providing an indicative timeline. However, when I raised the reporting timeline with him last September, he said, "nobody will be waiting a year for a view from Dr. Nayagam and this review". He also committed to interim reviews and said that the review was being set up in such a way as to ensure that pressing clinical issues would be reported on in 2023. Again, those were just empty promises. Even with the discovery of new cases, I cannot understand why we have not heard anything from this review. What happened to the interim reports?

I welcome the Minister’s commitment to establish the task force, the structure of which must be informed by the views and position of advocacy groups. The Social Democrats fully support the call in the motion for the task force to be independent of CHI management and for it to have a mandate to listen, engage and act on the advice and concerns of parents, patient advocates and clinicians.

I wish to state my strong support for the inclusion of paediatric urology in this motion and for the specific call for a suitable location for the elective paediatric urology service. I heard Senator Tom Clonan speak about the waiting lists relating to this matter last week. He gave a harrowing account of children with disabilities being left to languish on urological surgery waiting lists while their urinary continence, faecal continence and sexual development suffer due to a lack of intervention. That is completely unacceptable. How can the Minister stand over a situation where 81% of children are waiting longer than the Sláintecare target time for inpatient paediatric urology, while 72% are waiting longer than the target time for outpatient paediatric urology? That is indefensible. This is clearly a completely overlooked area of healthcare despite the severe implications for patients as a result of inadequate services. They can include the loss of renal function, loss of genital and sexual function, infertility, higher rates of urological cancers, increased levels of morbidity, psychological disorders and in some cases, even more serious outcomes.

This area of medicine is a very sensitive and personal one. That is why we need appropriately trained and qualified paediatric urologists. In 2019, a model of care for urology was published by the Royal College of Surgeons in Ireland in partnership with the HSE. Among its findings was that Ireland had one of the lowest ratios of accredited urologists in the western world. At the time, Ireland had 37 urologists. While the number had increased to 51 by 2022, that still only represents 40% of what New Zealand had and 20% of what Denmark had. Both these countries have populations similar in size to Ireland. That same model of care recommended national and regional centres of excellence for sub-specialist urology such as complex paediatric urology. To deal with the deficit in paediatric urologists, the report also recommended that all new or replacement urology posts for the next 15 to 20 years have a component of paediatric urology in the job description. Can the Minister please let us know the status of this report and the implementation of these recommendations? One would be forgiven for assuming that this is just another report left to gather dust on a shelf. There are just too many devastating impacts of this Government’s inaction on paediatric orthopaedics and urology. Taken as a whole, they amount to one thing - a theft of childhood. While these children wait in limbo and get sicker and sicker, they are denied many aspects and parts of a normal childhood.

Year after year, this State has failed utterly in the context of its obligations to these children. All the while, they continue to suffer unimaginable pain. There can be no further excuses. It is time for action and accountability.

The countermotion that the Minister tabled is extremely disappointing. He does not seem to grasp the scale and the nature of the challenge he is facing or the action he needs to take. Nothing less than urgent action and delivery on his promises will be acceptable.

Deputy Gino Kenny

I will be sharing time with Deputy Paul Murphy. I welcome everyone in the Public Gallery tonight - the young people and their parents. We, too, will be supporting the motion, which is very good.

We have been here before. It is only five or six months ago that we discussed the same issue. It does not give me any pleasure to say it but successive Governments have let the families down. That is not a personal jibe at the Minister. I do not try to personalise issues, but the Minister will admit that the Government and those which preceded it have failed these families. The main thing is to get this right rather than getting it wrong and having to come back here in another year's time. It is in all our interests that the children get the interventions they need.

There was a watershed moment in 2017. I remember the then Minister, Deputy Harris, stating that no child would be waiting for more than four months. I said, "Fair play to him for saying that". However, what he said did not come to fruition. In fact, waiting times have either stagnated or increased. That is extremely disappointing.

There is a level of mistrust, anger and frustration among the families affected. That is difficult to calculate and quantify when you see your child suffering and in pain without timely intervention.

We have highly qualified medical practitioners in this country, we have a world-class system and we have very wealthy people. However, the children to whom the motion relates cannot get the interventions they need. It is mind-boggling that this keeps happening.

Establishing a task force is a good idea. It gives people outside the medical profession a democratic voice. It is important not to have a paternalistic approach, as is the case with many issues in the system.

We have to learn from what we get right and what we get wrong, and what we can do right, here and internationally, around scoliosis surgery. It is really important to do that. Action is needed, I am sure the Minister will agree. I just hope we will not be back here in six or 12 months discussing this matter again.

I heard the Minister's contribution. The amendment is disappointing. There is no doubt about that. It was disappointing to hear what he had to say.

The families want to go beyond being in here in the Public Gallery or outside the Houses. They want to see their children getting the timely interventions they need. That is what they deserve. I hope we will not be back here in six months' time talking about the same issue.

Deputy Paul Murphy

First, I thank the families, the advocates and the children in the Gallery for taking time out to fight for healthcare services. People should get the healthcare that they need. They should not be on long waiting lists. They should not be waiting over a year to get healthcare.

It is a national scandal that we are here tonight. We have been here before. Children with scoliosis are being failed in such a brutal and inhumane way by the State. Every day, week and month that goes by with children on waiting lists for necessary operations as their conditions get worse, their discomfort and pain increase and as they head towards a point where they cannot be operated on is an absolute scandal.

I got many different emails from parents. I will quote one, to give a picture of what that looks like, as parents and as a family. It states:

On a personal note, our own son is waiting for scoliosis surgery and was due to have it back in August 2022. We have had to blue light him by ambulance multiple times now because he couldn't breathe and his oxygen levels were dangerously low. He had his first case of pneumonia at only 2 years of age, and he's even ended up in ICU because his breathing was so bad. His ribs are quite literally crushing his lungs thanks to this scoliosis and yet he is sat on a waitlist, and is having zero monitoring of his condition.

That is an indefensible scandal to have happening, not once but multiple times, in our country. The Minister did not really attempt to defend it, which is fair enough. I agree that it is indefensible, but it is as a result of political choices that we have reached to this point. That is undeniable. It is political choices that have resulted in us not providing adequate necessary care for these children. Different political choices need to be made. They could begin to be made this week in terms of passing the motion from Sinn Féin. Part of that would involve establishing a task force, making sure that the advocacy groups and the parents of those affected are fully involved and then investing the resources to deal with this, to get through the waiting lists and to ensure that they do not build up again.

There obviously is a context to this, which is the revelations a number of months ago where you had a group of people badly failed by the State, more than 100 children who had at that stage been on waiting lists for more than a year, neglected and not listened to, and then these really shocking revelations indicating that some of the children had standards of care that were substantially less than what they should be expecting with high complication rates relating to a particular surgeon, high reinfection rates and the insertion of unlicensed metal springs. All of that potentially relates to the behaviour of an individual consultant or surgeon. That is true, but there are also institutional issues. How this could have happened, namely, how springs could have been brought into operating theatres and been inserted into children, speaks to wider institutional cultural issues and governance issues within CHI. In addition, the response to this, the fact that the advocacy groups do not have confidence in CHI's response in terms of the second external review that was established, spoke, understandably, to the deep distrust that these families have of CHI. There are clearly suggestions that there are children waiting longer as a consequence of that surgeon not performing surgeries. If that is the case, that also speaks to an incredible institutional failure to be so reliant on one individual to perform these surgeries. Even if we did not have these very serious allegations and a suspension, the individual in question could have an accident. He could get sick. Many things could happen. We should not have a system based around the fact that only one person can do these very complex cases. All of those issues need to be addressed and are some of the things a task force should do.

I have questions about what is happening in terms of the investigation into the use of those springs and into the high complication rates. I wonder whether simple things have been done by either the HSE or CHI. Have springs been purchased? Were they tested in terms of whether they are safe to be in a human body for an extended period? What happens if they are in a human body for an extended period? I hope that the HSE or CHI, which are working together, are addressing some of those issues.

I want to refer to the replies I received from the Minister to a number of parliamentary questions I tabled.

A former patient of this surgeon has contacted me with concerns about her treatment. She was an adult in Cappagh hospital and was asking about her treatment and whether it would be included in this investigation. The answer from the parliamentary questions is “No”. If there is a question mark over the standard of surgery provided by one surgeon, why would we assume that only applies to children in their care. Why would it not involve others? Even if it is not being included in this external review, there are issues the Minister needs to return to.

I reiterate the point that political choices have led us to this point. Different political choices need to be made. We need a task force. We need action. None of this needs to be the way it is. Children do not have to be on waiting lists, in positions of torture for extended periods of time.

Deputy Peter Fitzpatrick

Children with a range of needs rely on the orthopaedic service of Children’s Health Ireland, among them children with spina bifida, scoliosis, hip deformity and other orthopaedic needs. The complex patient needs of these children remains at the forefront of service provision. However, waiting times for many hospital procedures and appointments are unacceptably long. I remain acutely aware of the impact this has on children and their families, especially for time-sensitive procedures where time is a crucial factor in ensuring these children have a positive outcome from their surgeries. The length of time these children have to wait not only impacts on their quality of life, but there are major concerns that the vast majority of children currently waiting for care will age out of paediatrics untreated.

In 2022, an oversight group, co-chaired by the Secretary General of the Department of Health and the CEO of the HSE, evolved into the waiting list task force. This task force produced a comprehensive 2022 waiting list action plan which set out high-level targets for waiting list improvement, including dedicated funding for service reform, patient pathway improvement and important significant additionality to substantially reduce the backlog of patients waiting. This plan was to be funded in the context of the wider waiting list action plan for 2022 and included additional activity to reduce the spinal orthopaedic waiting list through the use of theatres at Crumlin, Temple Street, and Cappagh hospitals. Additional capacity was also promised in the private sector to work towards reducing paediatric orthopaedic waiting times.

I acknowledge that for 2023, €123 million was allocated for the delivery of the HSE waiting list action plan, including priority areas such as spina bifida and scoliosis. This should have facilitated, improved, and broadened paediatric orthopaedic service delivery and access to specialists in the area of neurodisability, neurosurgery, orthopaedics, urology, occupational therapy, physiotherapy and neuropsychology. However, as of 13 February, there are 327 children listed as waiting on a scoliosis related surgery with Children's Health Ireland compared with 312 in February 2017. It is evident that waiting lists are only getting longer and these resources are not being utilised efficiently. As a result, Government has failed to deliver on its health and social care commitments to children, whereby children's healthcare services are not operating at a satisfactory level, as evidenced in the Sláintecare waiting list metrics.

Any delay in lifesaving orthopaedic surgeries will, and has, caused serious damage to children. This is also true for urology services whereby delays in urology surgery are causing irreparable damage to children’s organs, such as their kidneys, ureters, bladder, prostate, testes and genitalia. For example, some are facing renal failure as a result of not getting treatment in a timely manner. I am often approached by parents regarding problems with orthopaedic surgery, especially waiting lists for scoliosis surgery and urology surgery. The longer children wait for treatment, the more serious the problem becomes, the more extensive is the surgery required and the higher the cost.

The funding must be put into areas that will make a difference for the children who urgently need surgery. Funding allocated for orthopaedics, with a very clear focus on paediatric spinal work, needs to be prioritised and implemented in these areas. It is evident from last week's Joint Committee on Health that the Minister for Health is not satisfied that the €19 million investment fund has been allocated according to his clear direction on prioritisation for orthopaedics. Therefore, an independent task force, independent of CHI management, must conduct a comprehensive review of scoliosis and spina bifida services, including funding implementation and mismanagement, transitional care, post-surgical specialist rehabilitation, and full and appropriate access to community services. This is important to establish a sustainable public model of delivering specialist care for children.

Seven years ago, the Government made a commitment that no child would wait more than four months for spinal surgery. This commitment has been repeatedly broken, with devastating consequences. Everything we do must be to ensure we have the best possible services for children, including spina bifida, scoliosis and other paediatric orthopaedic services. The system is not working. Action is required immediately and not down the road. The focus now needs to be on ensuring children get access to services as quickly as possible and that the waiting lists which had been there for many years are permanently eradicated.

Children deserve the best possible services. They should come first. It is not right that children have to wait for so long for surgery. It is not only impacting the children but their whole families. I recall how years ago the then Minister for Health, James Reilly, said the money should follow the patients. I am asking the Minister what the problem is? There seems to be plenty of money in the budget. Is there a problem with the doctors and the surgeons? What is the problem? This does not seem to be a problem in other countries but we seem to have a problem. Please look after the children. I spoke today about strokes. A couple of weeks ago I spoke about hearts. I am a firm believer that your health is your wealth. Children should come first and these children should be looked after.

Deputy Matt Shanahan

I welcome those who are here in the Gallery. It is telling that they feel they have to bring their children to this Chamber to try to get their message across. I remember when Deputy Simon Harris was Minister for Health, we were talking about a task force for scoliosis and spina bifida. I think that is eight years ago at this stage. It tells you the progress we are making. I am someone who has had a personal story about scoliosis. I have a cousin who had it and I was quite close to the family while they were going through that. That is more than a few years ago. He is a young man now and thankfully has had his surgery and is doing terribly well, but the delays were inordinate and he suffered greatly. When we look at patients who were in distress, we all want to do something. If you are there by the bedside of anybody, you feel like you want to do something. How is it that we can travel eight, ten or 12 years and be making such slow progress?

The waiting lists are indicative that what we are doing is not working. In his opening remarks, the Minister highlighted his concern about the €19 million he had made available and that it appears not all of it was directed at the area which he had hoped. Surprise, surprise. Hospital management teams, when they are short on resources, will direct resources, when they become available, where they feel they will be expedient. A task force to look at this whole area is very much required because what we have done is not working. I do not like reviews that are not independently chaired and managed. I suggest to the Minister that what he is talking about with the new management policy that he announced will not be sufficiently independent.

I have never heard comprehensive statements made about the idea of taking scoliosis and spina bifida patients out of the country for treatment. I understand there is a significant cost and that there is a significant wrap-around service post surgery, support for the families and so on, but surely in light of waiting lists of three, four or five years for spinal surgery this is something we should look at properly.

How confident is the Minister in the strategy he has outlined delivering? I applaud the fact he is optimistic about it but it needs to be done from the outside looking in. I do not believe in insider views looking out. He will find that if the €19 million he directed has gone astray, it has not gone into anyone’s pockets. It has gone towards trying to resource other emergency services in the hospitals. What is more, that is probably not enough. That begs the question of how much the Minister is planning to put in to a new initiative for spina bifida and spinal surgery.

The motion calls for the best use of international services. I know another theatre has been opened in Temple Street.

Again, I ask the Minister if that is enough. The Minister has highlighted that he has sought to put more money into Cappagh hospital. I am not sure the expertise is there, so I suppose we will have to wait until the new children’s hospital is open. It seems to me that is being put forward as the panacea that will solve all of these problems in paediatric care. I put it to the Minister that it will not until we get dedicated teams on the ground.

We will have to bring in outside specialists in the meantime. You cannot just magic up orthopaedic surgeons who have the ability to carry out spinal surgery, as well the Minister knows. That is one of the problems. We should be looking at a model whereby we bring in people, if necessary, from the United States on short-term contracts and pay them the exorbitant money they will demand to deal with these waiting lists, to satisfy the needs of children who cannot afford to wait any longer and to take the stress off families and parents who, at this stage, must be asking themselves what they have to do to receive adequate care in this State.

I support the Sinn Féin position on an external task force. That is the very least in what must be done.

Deputy Mattie McGrath

I, too, support this motion. It is a terribly sad situation. I issue a fíorfháilte do na daoine óga is aosta sa Ghailearaí freisin. I welcome the people to the Gallery. They should not have to come here but, unfortunately, in this country, especially with health, while so many good things happen, which we acknowledge, in this area of scoliosis and, indeed, urology, it beggars belief. When I was first elected to the House, and it was a privilege, in 2007, I think the budget for the HSE and the Department of Health was around €7 billion or €8 billion. It is now €24 billion and is growing. These situations are completely intolerable.

My late brother was a paediatrician of some renown, God rest him. A wonderful lady, Clodagh Sweeney, took pen to paper and wrote about her little daughter Keri who was born with huge difficulties and went all through life like that. My brother happened to be her paediatrician. Clodagh contacted me about two years ago and said that my late brother had asked her before he died that she should write a book about her story. She did and spent hours, weeks and years of research on a wonderful story, and I was privileged to launch that leabhar or book in Cluain Meala two weeks ago. It tells the story of her battles with the HSE, of her very sick child, of having to battle for everything, and of having been dismissed by so many medical people. It acknowledges there were good people along the way but she had to fight a massive court battle to get recognition for her child.

The child then developed scoliosis, as if she had not been sick enough. It was the same story. She had the operation after awful battles, but then she outgrew the procedure and the steel rod came out through a hole in her back. This is a telling and truly awful story. Clodagh Sweeney put this story to paper and it is a wonderful story. It tells of how the surgeon here would not redo the operation and would not allow her to go or recommend in a letter for her to go to England. This was horrific. I know this happened to a minority of people but it is just disgusting. I salute Clodagh Sweeney, and God rest her daughter who died at the age of 16 in 2014. There was such support in the community, from her family, her mother and the child’s little sister. It is a wonderful story and I invite anyone to get the book to read about the battles the HSE legal teams put in front of ordinary people when they are fighting for justice for their families. It beggars belief that the State would allow legal teams to force a mother like that with such a sick child in that way.

God rest the child and I hope she is in heaven now with the angel,s and I know she is after all her suffering. This woman is an inspiration but the way she had to battle to get her child looked after and the stories she has written about in her book would bring tears to a stone. The worst part was that when the operation failed and the bar that was put in place gave in, the surgeon knew the position. Clodagh Sweeney says it was ego that would not allow him to admit he had made a mistake and the operation had gone wrong. Is mór an trua an rud sin.

Deputy Michael Healy-Rae

I thank Sinn Féin most sincerely for bringing this important motion on paediatric, orthopaedic and urology services before the Dáil Éireann here this evening. It is very important and I thank that party's members very sincerely for it. I welcome and support the motion. As it states, as of 13 February 2024, a staggering 327 children are on the waiting list for scoliosis related surgery with Children’s Health Ireland. This figure is a significant increase from the 312 children waiting in February 2017. The situation is dire and calls for immediate attention.

I welcome the people who were outside the gates of Dáil Éireann earlier this evening, and I thank Deputy Cullinane for his work in organising all of that. I welcome the people who are in the Public Gallery.

Unfortunately, the crisis in our healthcare system represents a litany of broken promises and unfulfilled commitments by the Minister for Health and the Government. In March 2017, the then Minister for Health, Deputy Simon Harris, made a commitment that no child would wait more than four months for spinal surgery by the end of that year. However, this promise remains unfulfilled.

There is one thing I would say about a political promise. If that was a promise to build a bridge, to make a new road or bypass, or to put an extension on to a public building, and if that promise was not kept, you could sleep the night without it being fulfilled. You could get along without that promise being kept, but when a person promises a child who is in pain, where the parents, the siblings, the grandparents and the friends are looking at that child in pain, and that person breaks that promise, that is bad. That is not proper behaviour. That is messing with people’s lives and with children’s lives.

If there was only a thorn stuck in your finger today and you could not get it out, would it not aggravate, hurt and upset you? It would only be a small thorn in your toe, but my goodness, I have seen at first hand the pain and the suffering little children with scoliosis and curvatures of their spine go through. I have listened to parents telling me and it is absolutely horrendous. Every bit of power we have in this State and every bit of resource we have should be channelled towards those 327 children who are on the waiting list for scoliosis related surgery. There should be no delay. Because of the fact they are little children and they are growing continuously, they need constant intervention and medical care. That is why breaking a political promise like that is not a venial sin; that is a mortal sin, and there is an awful difference. I want to highlight that.

I thank Sinn Féin again for the work it is doing in bringing this forward before the House and in giving us an opportunity to support the motion.

Deputy Danny Healy-Rae

I am glad to get the opportunity to speak and I, too, thank Sinn Féin for bringing this very important motion here before us tonight.

I actually raised the issue of scoliosis and funding almost two years ago with the then Taoiseach, Deputy Micheál Martin. He actually got very agitated and cross when I had asked him because he had made an announcement of €5 million. This was a number of months afterwards because people were still ringing because their children were in pain, they were waiting and they wanted approval to go abroad. There were not being facilitated and, like has been said, a child or anyone in pain, whoever it is, has to be sorted out first.

We have seen again this week where the Government’s priorities are totally wrong, where it was able to fund €800,000 for pets from another country and to provide housing for them and we have children of our own languishing here waiting for some consultant who is on some type of leave. If we have no orthopaedic surgeon or if there are no surgeons, these 327 children who are waiting now should be treated abroad and this should funded with taxpayers’ money. I make no apology for using taxpayers’ money to do that because that is most important. These are the issues we should be dealing with and not the nonsense. I am appealing to the Minister of State and I appreciate what she has done on other occasions.

Regardless of the senior Minister, I am asking the Minister of State to ensure we sort out this problem and that these people up here, good people who have children suffering belonging to them, do not have to come in once more. They were outside the gates this evening and it is hard enough for them to mind their children, let alone to see them suffering agony. Some of these children, if they are not treated today, will outgrow the treatment that could be done for them. Seconds, minutes and hours are vital in cases like this which can end fatally if children are not seen in time. We should join together, regardless of what politics or none, and ensure this problem is sorted out once and for all. I see in some part of the Minister's report that he wants to set up a task force, but I say to hell with the task force. The Minister should sort out the problem.

Deputy Marian Harkin

I thank Sinn Féin for bringing forward this really powerful motion. It gives all of us an opportunity to once again discuss this terrible situation with paediatric, orthopaedic and urology services. I thank the Minister of State, Deputy Butler, for being here. The senior Minister is not here, but I listened to what he had to say earlier. Despite the fact he was talking about all his reviews and all his efforts, it remains true that 78% of children are waiting longer than the Sláintecare target time for a paediatric orthopaedic inpatient appointment for CHI and 81% are waiting longer than the target time for paediatric urology, so the fact of the matter is his efforts are not bearing fruit.

I welcome all the families who came to Leinster House today. I am sure some of them are still here in the Gallery. As with all the rest of the TDs here, the hardest thing we have to do is go out and meet people who are sick and their advocates and people who are waiting and waiting for healthcare. To have to meet those people either outside or inside Leinster House is such a difficult thing to do, and that is just for us. Can we imagine how difficult it is for all those people who travelled from different parts of the country to stand outside their national Parliament on a pretty cool February afternoon? I met a mother from Donegal whose daughter was with her in a wheelchair. She is waiting over five years for surgery. She tells me she has lost lung capacity. Her curvature is 138° and her skin is broken by her bones. When a mother says that to you and you can see that little girl in front of you, you just do not know what to say because it is just so heart-breaking, yet parents talk about one disappointment after another. That mother told me her daughter has had two pre-ops and two cancellations because of no beds, no theatre or no staff. Right now she has been told it will be four to six weeks, but as she said to me she will not believe it until it happens. The sadness in that woman’s eyes and the hopelessness I could see around me was just very difficult for all those people here.

Even when we speak to people who are very ill, there is still always hope that if they can access proper healthcare things will improve, but today I chatted to a young man in a wheelchair and asked him to tell me his story. I had no idea who he was. He told me it was too late for him. He said he waited and waited and waited and finally when he was getting his surgery the surgeon told him nothing could be done. His condition is beyond medical intervention. When we get to that point it is no wonder one TD after another is standing up in this House complaining strongly and vociferously about a service that is failing young people and their families.

I did not have to go outside Leinster House because I get many emails and phone calls from people in my constituency who are waiting and waiting for surgery and physiotherapy. I am dealing with one family whose daughter is on a waiting list. She is hopeful it will be four to six weeks, but under no circumstances do I want to get an email in four or six weeks’ time from the mother telling me the surgery did not take place because she has had one delay after another. She also has serious questions about the physiotherapy services that are being provided. They are totally inadequate. Her daughter is supposed to be seen every four weeks, but it often runs to eight weeks. She said the CDNT service is not working. I have another family who have a little girl. She is on a waiting list since she was 18 months old and she is now six and a half. It is no wonder all of us here strongly support this motion. We ask the Minister of State and the Minister, Deputy Donnelly, to do something about it and help these people.

Deputy Catherine Connolly

I thank Sinn Féin for bringing forward this motion and for shining the spotlight on this. The first line of the motion "notes that, as of 13th February, 2024, there are 327 children listed as waiting on a scoliosis-related surgery with Children's Health Ireland (CHI), as compared to 312 in February 2017". That is despite promises, despite everything. I am not going to use my time to repeat everything that is set out. It is set out clearly.

I am not sure how a person could not agree with setting up an independent task force. The families are very welcome but they should not be here. They should not have to go through this pain on top of what they have been through. The Minister of State knows that, but the point is we are here in relation to that and we are here after three reviews. There is the one that is ongoing at the moment and we have no idea how long it will take. I tabled Dáil questions. I do not know whether there are any interim reports and we do not know the timeline for the completion. That ongoing report, with another 17 further cases identified, comes on top of three previous reports. Earlier one of the TDs said there is an absence of governance and institutional issues and I certainly agree. There are serious issues with CHI itself as to how things were not picked out along the way. The ongoing review now comes on top of the internal report, namely, CHI’s Spines Clinical Review Report from May 2023, the external report Children’s Health Ireland at Temple Street Spinal Surgery Programme for Patients with Spina Bifida from 7 July 2023 and an internal report, Spina Bifida Spinal Surgery Clinical Outcomes Review 2023. Imagine we have all these reports and a fourth report while families watch their children deteriorate in front of their eyes. It is beyond endurance how the CHI could not have had a pro-active approach to this, telling us what was necessary. I cannot fathom how we have come to the point where I am standing up supporting an independent review because the system has utterly failed over and over.

That internal reviews begs so many questions about this situation. This has happened over and over as the Minister of State knows, such as at Portiuncula and Portlaoise in relations of deaths of infants and mothers and so on. I will look at Galway and go parochial for just a moment. About a year ago HIQA visited University Hospital Galway and in its wisdom told us it was “grossly overcrowded” in the accident and emergency department. This is the new accident and emergency department, the temporary one that cost €16 million because the new one has gone into cloud cuckoo land. On the day HIQA visited for an unannounced inspection it praised the staff and the progress made, but gave a damning indictment of the situation that remained on the ground. The inspectors said “the ED was grossly overcrowded” with 28 patients on trolleys. Does the Minister of State know how many are on trolleys as we speak? It is 54 today. It was grossly overcrowded with 28. Taking any week in the last while we have had 54, 61, 58 and 55 people on trolleys.

If it was grossly overcrowded with 28, HIQA has no language left to tell us about this.

On top of that, the situation whereby children and paediatrics were to have a different route into the hospital has gone by the board. We hear an awful lot about University Hospital Limerick, and rightly so, and Cork. The regional, despite the work of the staff, remains the third worst hospital in terms of waiting lists, inadequate accident and emergency services and the failure to adopt the options appraisal, which was to build a brand new hospital in Merlin Park. That never happened, so we continue piecemeal.

In the context of tonight's discussion, the waiting list figures for orthopaedics in Galway are absolutely damning. It was 400-odd for orthopaedics and a couple of hundred for urology. Going back over the years, orthopaedics generally has been the worst for waiting lists. In the past, I have read out a letter in which the consultant said they could not stand over the pain being suffered by patients. That is Galway, separate from this specific issue, but the whole lot taken together is an indictment of what we have allowed to happen in a Republic.

Deputy Violet-Anne Wynne

I commend this serious and important motion. I acknowledge the suffering that those children with spina bifida and scoliosis have endured and are still enduring. Those children were failed and their families were failed, and they have felt every minute of those failures. I acknowledge their presence in the Gallery and applaud them for the untold struggle they face in being here tonight, and that is just to feel they have a voice. I was grateful to meet with and speak to a parent outside the Houses earlier today. They outlined to me the immense levels of frustration for their family and the huge importance of ensuring that the task force is independent of CHI management and for it to be mandated to actively listen and meaningfully engage with the parents and patient advocates. That must be delivered at the bare minimum. I say that because trust has been severely severed and the Government must be respectful of those who know best. They surely are the experts on the issue.

As has been said, it has been seven years since the then Minister for Health committed that no child would wait more than four months for spinal surgery, yet the situation now is worse than ever. One of the identified issues is the voluntary leave of a consultant. The question is why we build our entire health service on the expertise of one consultant covering a brief and then, when that consultant goes on leave, retires, moves on or whatever the case may be, there are delays and the system goes into chaos. Where is the evidence of forward-planning for such instances? The Minister in his opening statement mentioned funding he has allocated and the fact that it may not have been spent in the way in which it was supposed to be.

Notwithstanding that this is hugely concerning, in that context, and on the point of orthopaedics, Croom Orthopaedic Hospital has no X-ray machine. A patient has to go to the regional to get his or her X-ray, only to then have it read in Croom. That has been relayed to me by a number of constituents. Serious questions must therefore be asked about the future of healthcare in respect of priorities of senior management and the Government.

Minister of State at the Department of Health (Deputy Mary Butler)

I thank all colleagues here for the attention they have given to this really important matter. I also acknowledge all upstairs looking down on us. They have been here all day. They have travelled far and wide to be here to tell their stories. As the Minister said earlier, he had to leave early. He is attending a meeting with the chief executive of the HSE, Bernard Gloster, and the HSE board at 7.30 p.m. or 8 o'clock - I am not sure which. That is why he has left. He has assured me that he will raise this as a priority.

We are making progress with the waiting lists for spinal surgery despite the significant increase in demands and referrals compared with previous years. We have seen a 13% reduction in children waiting over four months for spinal procedures at the end of 2023 compared with 2022. We have also seen a 5% reduction in the number of children waiting for spinal procedures, excluding suspensions, at the end of 2023 compared with 2022. However, we are not for a moment saying that is good enough.

Funding has been provided to deliver these vital orthopaedic and neurology services for children. Some €19 million was committed to scoliosis and spina bifida as a priority in both the 2022 and 2023 waiting list action plans to increase activity and reduce waiting times for children. That is all anybody wants and that is all everybody in this House wants: not to see children suffering, not to see children in pain, not to see appointments cancelled, as Deputy Harkin said, not to see the situation whereby people get an email saying they will be looked after in four weeks' time and then that is cancelled. That is heartbreaking for any parent. I am a mother of three. It is heartbreaking for any parent to try to deal with that.

I welcome the fact that the Minister, Deputy Donnelly, has announced tonight that there will be an internal audit team because our job as Ministers and Ministers of State in government is to try to secure as much funding as we possibly can at budget time in order that services can be delivered. We expect the services to be operationalised by whoever is delivering them. If the full amount that was committed to scoliosis and spina bifida as a priority has not been spent, that is certainly not good enough.

The funding has supported the recruitment of significant additional healthcare professionals, including nurses, consultant doctors, anaesthesiologists and radiographers. It has also supported the opening of a fifth theatre in Temple Street and an MRI in Crumlin, along with additional beds. At the time when all these were opened, we were very hopeful. Additionally, this investment has supported more capacity through national outsourcing at Cappagh, and this has resulted in an increase in activity.

The number of spinal procedures undertaken in 2022 was 509. In 2023, 464 procedures were carried out. This represented a 34% increase and a 22% increase, respectively, compared with the 380 procedures carried out in 2019. Despite undertaking a record number of spinal procedures over the past two years, the expected reductions in the waiting list were offset by a significant increase in demand and referrals compared with previous years. We have seen a 42% increase in cases presenting compared with 2018.

There are currently 288 children on the waiting list for spinal procedures, including suspensions. The latest National Treatment Purchase Fund waiting list figures for January 2024 show that there are 890 patients waiting for an inpatient or day case orthopaedic procedure at Children's Health Ireland. Since December 2023, there has been a decrease of 4% in the number of children waiting outside the 12-week target for orthopaedic treatment. There are 476 patients waiting for an inpatient or day-case urology procedure at Children's Health Ireland. Since December 2023, there has been a decrease of 5% in the number of children waiting outside the 12-week target for inpatient or day-case urology treatment. The Minister and I accept that waiting lists for scoliosis and spina bifida services are far too long.

The Minister intends to convene a dedicated stakeholder task force. He met with patient advocacy groups yesterday to explore the terms of reference for this task force. A dedicated paediatric spinal surgery management unit has been established in Children's Health Ireland. This unit is focusing on the management and delivery of spinal surgery, including reform of the waiting lists. Work is under way on a paediatric spinal care programme of work. This programme includes actions being taken to address the current waiting lists, such as the implementation of identified improvements to the management of spinal surgery and the waiting lists. There is also ongoing work as regards outsourcing options for clinically suitable children in order to increase capacity for this vital service. I know work is under way in respect of one facility in Northern Ireland. It is being explored in the context of outsourcing options for clinically suitable children. The programme is also looking to the future, and work has begun to design a dedicated paediatric spinal service for the new children's hospital, which this Government is committed to seeing open as soon as possible.

As I said, scoliosis and spina bifida were identified as a problem in 2022 and 2023 in the waiting list action plan, and €19 million of current and capital funding is committed to target these waiting lists by improving the patients' journey and creating additional capacity. The investment has supported an increase in the number of spinal procedures undertaken in both 2022 and 2023, and scoliosis and spina bifida services will continue to be priority areas under the 2024 waiting list action plan.

Despite undertaking a record number of spinal procedures over the last two years, the expected reductions in the waiting list were offset by a significant increase and demand in referrals compared to previous years, with a 30% increase in additions to the spinal fusion surgery list in 2022 and a 42% increase in 2023. In recognition of this significant increase in demand, the HSE, the NTPF and CHI are exploring all options to increase capacity for this vital service.

I reiterate that the Government acknowledges that waiting lists for scoliosis and spina bifida are too long and that many patients have been waiting an unacceptably long time for care. There is nothing worse for any parent than to be looking at their child in pain. There is nothing worse for any parent than to get that letter in the post to tell them their child has gotten a referral date and then the date is suspended. There is nothing worse for a parent than when their child's surgery is authorised and there may not be sufficient nursing staff to look after the child, especially when it is very complex care.

I will continue to work with the Minister for Health to do my utmost to make sure we can make progress on this matter for all those children who are waiting. I reiterate that this issue is not financial. The Minister, Deputy Donnelly, has allocated a significant amount of funding to CHI over the last two and three years to make sure that children should not have to wait any longer than necessary. Unfortunately, even though the funding was allocated, we have seen such a demand for services that waiting lists have grown. I accept that this is not good enough. We are committed to improving waiting times for children seeking scoliosis and spina bifida care. All we want to do is benefit the children and families who need this care.

An Cathaoirleach Gníomhach (Deputy Marc Ó Cathasaigh)

Táim ar ais ag Sinn Féin anois. Iarraim ar na Teachtaí, Funchion, Ward, Carthy agus Cullinane deireadh a chur leis an díospóireacht anois.

Deputy Kathleen Funchion

First, I would like to thank my colleague, Deputy Cullinane, and also Daniel who works with him, for all their work in this regard and for this evening. I join others in welcoming and thanking the families for making the effort to travel this evening to be here.

It is really important that we continue to shine a light on the absolute failure of children's healthcare in the State. Undoubtedly, we are failing children. Endless promises are made. We often hear pronouncements that we cannot let things like this happen again and yet here we are again.

The families do not want to hear that it is "not good enough". Families do not want to hear that the Minister of State has empathy. Families want to hear that she has a plan and a solution. We are putting that forward in our motion tonight. I cannot believe the Government is not going to support the motion.

The never-ending trauma inflicted on children and their families will have a permanent and harmful impact on their health, not to mention the child's mental health as well. Parents accessing healthcare on behalf of their children are in a constant and relentless battle, and it is not just in this area. We have heard the statistics, which are absolutely frightening, with regard to spinal surgeries. Children with additional needs are also waiting to access therapy appointments and assessments. Children accessing CAMHS are waiting for those services. The Children's Rights Alliance today gave the Government an E grade for the third year in a row regarding children being admitted to adult psychiatric units. Here we are again with the same old story.

I cannot imagine how desperate parents must feel at this point. Because of their child's health, they have essentially become campaigners and lobbyists just to get their children access to transitional care, specialist rehabilitation or surgeries or whatever entitlements they should have as a right. The high percentage of children waiting for vital appointments remains desperately higher than Sláintecare targets. It is vital that children are seen based on clinical need and not the ability to pay. What we are really doing by allowing this to continue is failing a whole generation of children.

Deputy Mark Ward

In my limited time, I want to talk about a young boy who is living in Clondalkin. Harvey Sherratt is only eight years of age and has spina bifida and scoliosis. Harvey is waiting on scoliosis surgery and was due to have it back in August 2022. Harvey has been taken to hospital by ambulance multiple times because he could not breathe and his oxygen levels were dangerously low. Harvey had his first case of pneumonia at only two years of age and even ended up in the ICU because his breathing was so bad. Harvey's dad, Stephen, sent me videos of Harvey struggling to breathe. I have to say it was absolutely heartbreaking to watch. I do not know how his family manage on a daily basis but manage they must. His ribs were quite literally crushing his lungs due to scoliosis, yet he has been left on a waiting list with zero monitoring of his condition. This kind of treatment simply cannot go on.

Right now, children are at home in immense pain because our health system is failing them. I met Harvey's father, Stephen, outside Leinster House today. Harvey's parents and other parents are pushing for an independent task force to be implemented and for better access to care and treatment for their children's needs. I welcome him and all the other families, parents and campaigners to the Public Gallery. I particularly want to mention Hugh O'Rourke, an amazing young man from Lucan who is 17 years of age. I wish him every success as he attempts to sit his leaving certificate examinations next year. Families should not have to fight but fight they must. I call on all public representatives to support the Sinn Féin motion. I call on the Government to withdraw its motion - it is the right thing to do - and help us to ensure that our children get the care and timely treatment they have been denied for so long.

Deputy Matt Carthy

I join with everybody in welcoming the children in the Public Gallery along with their parents and siblings. To state the obvious, they should not have had to come to the Dáil this evening.

I especially want to welcome a gorgeous little girl from my own county, Aoibh Rooney, along with her parents Eavan and Philly. Aoibh was born with arthrogryposis. I am pronouncing that completely wrong, but it is a horrible and painful condition. Eve's joints tighten and if they are left untreated, they dislocate and twist so that everyday tasks become a painful ordeal.

The scoliosis crisis has become so desperate that children with Aoibh's condition have, it appears to her parents, been ignored entirely. Aoibh is not a faceless child, and neither are the hundreds of other children who have been abandoned and neglected, including those on surgical waiting lists and endless outpatient lists. Many children are becoming inoperable while waiting on these lists. Her family have even travelled to the United States and England. She was in Poland last week where, I am told, there were at least four other Irish families at the same clinic.

Aoibh's family want me to record that they have no confidence in CHI management to address her needs. They tell me they feel that the neglect of children with disabilities in Ireland has been normalised by CHI executive management. There was a plan in place for Aoibh. She was making progress and her parents had hope. Aoibh's surgeon is now on leave, however, as is well known. Therefore, it is the job of the Minister of State and the Government to find a solution for Aoibh and other children. It is the Government's job to ensure no child is living with pain and no child suffers lifelong damage because of the failures of bureaucrats, officials or incompetent politicians. The Government's amendment suggest that it continues to fail at its job. I ask and appeal to the Minister of State again to do the honourable thing by withdrawing the Government amendment and backing Deputy Cullinane's motion, which has the support of these families that have been affected and treated so badly for far too long.

Deputy Pearse Doherty

Hear, hear.

Deputy David Cullinane

It was very uplifting to have met so many children today, some of whom are still here in the Public Gallery. They travelled from the four corners of Ireland to be outside the Dáil and meet with politicians of all political parties to make the plea that we do more. All those children want is a fair start in life. What they want is equal access to healthcare and an equal shot at life as best they can. They want us, as legislators and politicians, to provide the healthcare resources and capacity they need.

It is also very distressing because many of those children have been waiting in pain for care for far too long. While on the one hand it is uplifting to see their courage and tenacity, it is also distressing to see the frustration and anger of so many of those children and, of course, their parents.

The Minister said that what is happening here is "inhumane". That is an understatement and we have said this time and again. This is where the real frustration comes. Time and again, we have debates such as this where we all come in and say that this inhumane and then things do not change. Seven years ago, as was said a number of times, Simon Harris made a commitment that no child should wait longer than four months. I have not seen - bar a Minister who has come in for a different debate - anybody from his party in the Chamber for this debate. Be that as it may, he made that commitment on the back of a plan. It was echoed again and restated by the current Minister for Health two years ago.

The Minister has come into the Dáil today, two years after he committed €19 million, which he told us, and he was told, would reduce to zero the waiting lists of children waiting no longer than four months. That did not happen. Two years have passed and there is no accountability. Astoundingly, the Minister has told us he cannot give a guarantee that all of the €19 million that was meant to be spent to reduce the waiting lists for those children was spent for the purposes for which it was intended. He said he will get auditors to look at it. This is just absolutely ridiculous. He did not mention to any degree at all the task force which needs to be set up. He made a passing reference to it. He made a reference to it in his amendment but of course he will vote down the motion we crafted with all the groups as best we could. We sat down with parents and advocates and asked what the task force should look like. The best selling point for that task force is what the Minister has said tonight. We have committed €19 million. It was meant to fix the problem, but it did not. The money was not spent in all areas for which it was intended. Two years on, the Minister for Health does not know what happened, or where it all went wrong. He told us, as he left the Chamber to go to meet the HSE board, that he will raise it with the chair. He is the Minister for Health. This is absolutely incredible.

I put it to the Minister and the Minister of State who are here that I am absolutely sick and tired of coming to this Chamber, as other people are, and having to raise this issue on behalf of these beautiful children, of whom there are so many across the State. We have to go back and face them and say the Minister is not going to accept the motion, but instead is telling us about all the great work he has done. He has spoken about figures, but they are not even the real ones because he has given us figures from the end of last year and not the current figures for February. It is absolutely disgraceful. We have a Minister for Health who is asleep at the wheel on this issue. In conclusion, I ask the Minister to show some respect to these children because they deserve better.

Deputy Matt Carthy

Hear, hear.

An Cathaoirleach Gníomhach (Deputy Marc Ó Cathasaigh)

The debate having now concluded, the first matter with which I have to deal is the Government amendment in the name of the Minister for Health.

Amendment put.

An Cathaoirleach Gníomhach (Deputy Marc Ó Cathasaigh)

As a division has been demanded, in accordance with Standing Order 80(2), the division is deferred until the weekly division time tomorrow evening. I thank all who participated in the debate.