David Cullinane (Waterford, Sinn Fein)

In 2017, the Tánaiste, Simon Harris, made a promise to children with scoliosis and spina bifida that long waiting lists would essentially end and that children would no longer wait in pain, deteriorate or lose the chance of life-changing and, in some cases, life-saving intervention. He promised that no child would be left waiting longer than four months for surgery. Since then, as we know, countless children have suffered in agony, without surgery within four months and, in many cases, tragically, without surgery at all.

We have to go back to the very beginning. Children's Health Ireland was legally established by Simon Harris in 2018. Yet, from its first days, it has lurched from crisis to crisis and the children who depend on the services have paid the price. CHI, as we know, was formed to amalgamate, essentially, the children's hospitals in Dublin, with a promise to provide a world-class service for children. Despite the Trojan work of healthcare workers in Crumlin, Temple Street and Cappagh, and I know that many people who work in these hospitals provide a tremendous service, the promise of providing a world-class service for all children never materialised. At the heart of this is exceptionally poor governance, which is made worse by four years of delays to the new children's hospital, a hospital that has made a mockery of the State because of a fundamentally flawed contract. It has to be said that this another calamity with Simon Harris's fingerprints all over it because he was, after all, the Minister who greenlit that project and signed off on the contract.

We know that children with spina bifida and scoliosis have waited far too long for essential surgeries. Even today, there are 232 children on waiting lists for spinal surgery, with most of them having waited longer than three months. We do not know how many have waited for longer than four months because CHI does not publish this information. Even when it comes to waiting lists and how they are presented, there is an appalling lack of transparency. What we do know is that behind every number is a child sometimes in pain, losing mobility and getting worse. The waiting list figures are concerning. The number of children without a date for surgery is up to 139, and another 43 are waiting on a date for a further procedure. Only nine actually have a date; the rest are suspended for various reasons. One child has now been waiting over 48 months for surgery, more than four years on the waiting list. Seven more have been waiting over a year. Children cannot wait months or years for time-sensitive and, at times, life-saving and life-changing spinal surgery. We know that many have not received proper pre-operative or post-operative care. We also know that many children are staying in hospital longer than expected because of high infection rates. This means many children stay in for weeks instead of days, causing distress, pain, time lost in school and time lost with family, and knock-on delays for other children waiting for care. Families tell me they are not being given the real data on infection rates, so they cannot give proper, informed consent. They are told to trust an organisation that has repeatedly abused and broken that trust, according to these very same parents.

One of the saddest failures in CHI is the abandonment of a group of children who came to be known as the Crumlin orphans. These are a group of children left without the care of any consultant in orthopaedics or urology. When this group of children was identified by what was known as the Dixon report, CHI said nothing. In fact, it never published the report and, worse than this, it never accepted the findings, despite the fact that we all know the findings were conclusive and were correct. CHI could not even say how many children were in this group. When this issue was identified again a few years later in another unpublished report, CHI still did not know how many children were in this group. This is a group of children who simply fell through the cracks. It is not that nobody knew this. The parents knew. They were screaming from the rooftops, but nobody in CHI management or in Government Buildings was listening.

Since then, we had the case of unauthorised non-medical-grade springs being implanted in children's backs. The HIQA review of these cases found severe governance failures, which allowed these tragedies to occur in the first place. HIQA found a lack of formal approval processes, inadequate oversight, poor record-keeping or a lack of consent from parents - the Minister mentioned this and poor communication earlier - poor tracking and traceability of devices and hygiene standards, and exceptionally weak clinical governance structures. These were not one-off lapses. They were the product of a system where governance was weak, where oversight was absent and, as the HIQA report said, where children were not protected from the risk of harm.

This scandal goes beyond spinal surgery waiting lists. We also know there have been potentially hundreds of unnecessary hip surgeries carried out on children. We have unpublished reports raising even more serious concerns about how CHI is governed and how children's services are delivered. We are still waiting on the Nayagam review, which may be next year. We were promised interim reports but they never materialised. We still have questions over new funding for children's orthopaedics. The Minister mentioned funding that is available. There are question marks around whether this is sufficient, whether it is targeted and whether it will deliver the capacity that children urgently need.

If anybody wants to understand the cost of these failures, they need look no further than the case of Harvey Morrison Sherratt. Harvey Morrison Sherratt was just one year old when the Tánaiste made his four-months-to-surgery promise. It took another seven years for Harvey to get that surgery. During the delays, Harvey's spinal curve deteriorated from severe to catastrophic. By 2022, his spinal curvature was 65° and by 2024, it had reached 110° and then 130°. Harvey was placed on an urgent waiting list for scoliosis surgery but he was also taken off that urgent waiting list and his parents still do not know why. Why was he taken off? Who took him off? I know the inquiry will obviously have to answer these questions. What we do know is that it happened without the consent of his parents, and his parents were not even informed. It is breathtaking to think that would happen.

It has since come to light that Harvey was allegedly and wrongfully removed from the list because he was listed as a palliative care patient, despite the fact that a consultant at Great Ormond Street Hospital had assessed him and found him as suitable for surgery. This compounds the anger the family justifiably have. While there was still potential to save young Harvey's life, it seems that someone took him off the list, and worse, it seems that someone decided not to communicate this to his parents. It was only late last year when Harvey eventually received his first surgery. Harvey's condition was entirely treatable, as far as I am concerned. His parents, Stephen and Gillian, campaigned with extraordinary courage to get the care of their son needed but, after years of delay and avoidable decline, Harvey tragically passed away this year, at the tender age of nine. Harvey was entirely failed every step of the way. CHI failed to give him the care he needed when he needed it. His case is now a defining symbol of systemic failure.

When I think of Harvey, I also think of the countless children and young adults who have been failed by CHI. I think of Dollceanna, who died at the age of ten after complications during surgery on her spine at Temple Street. I think of young TJ, who was diagnosed with spina bifida and scoliosis. He was denied early intervention and has now been told his condition is inoperable because he spent his childhood on waiting lists.

I think of Mikey from Mayo, who is still waiting for care. In fact, I think his parents have reached out looking for a meeting. These are just three children and there are many more names that we do not know. However, we know these children's names because their parents were forced to campaign, go public and have their cases raised here in this Chamber. It is only because of the courageous work of advocates that we know any of this. If CHI had its way, none of this would have come to light.

The tragedy here is that if the Government had listened to parents and advocates sooner, we might not have been here today discussing this issue at all. If it had delivered the resources and funding sooner, many of these tragedies would have been prevented. I pay tribute to Stephen and Gillian, Harvey's parents, as I have done in the past, but also to Amanda, Una, Claire and all of those advocates and mothers and fathers who went above and beyond the call of duty. They became advocates for others, not just their own children. I also pay tribute to the whistleblowers who came forward. We owe them a debt of gratitude as well.

What is needed now is not another internal review, another limited report or another chapter in a long pattern of deflection and delay. We need a full, independent, statutory public inquiry that is fit for purpose and can establish the facts, trace decisions and failures and finally deliver real accountability. Crucially, this inquiry has to have the full backing of families and advocates. It must be developed with them and it must get answers to the questions they have. It is important that we also improve the services. While an inquiry will be established, it is equally important that we invest in services. We have to make sure that every single child has timely access to care. I know from dealing with and talking to many parents that it is not just the surgeries. It is the pre-operative and post-operative care and the totality of that child's care that are really important.

I am thankful for the opportunity to raise these issues today. I know we will have an inquiry but we will watch the terms of reference and see exactly what that inquiry will be. I really hope that it is fit for purpose. I hope we see full co-operation from everybody involved and that all of those children and families get justice. I hope we can learn from this but also crucially invest in the services that need it.

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