Pádraig Rice (Cork South-Central, Social Democrats) | Oireachtas source

I welcome this important debate. As others have said, this is a serious issue. I have concerns about Government backbenchers trivialising it by talking about victories in camogie matches. That is perhaps something for them to reflect on. It is not appropriate.

There are serious issues in the operation of Children's Health Ireland. We need to understand how we got here, the impact of the scandals on children and their families and where we go from here. I will touch on a few issues. I want to look at the pre-CHI historical issues, issues with CHI and the failure to address them, the HIQA report and looking to the future.

There are serious issues with children's healthcare in Ireland. That is not new. We have reports spanning over a decade that set out serious concerns. In 2014, a report on children's spina bifida services identified major service deficiencies and gross under-resourcing at local and national levels. Many of these recommendations remain unimplemented. In 2017, the Ombudsman for Children published a damning report on scoliosis surgery waiting lists that highlighted serious violations of the rights of a child. One case from the 2017 report was that of Harriet, who waited 17 months for surgery. I will read from the report to give a sense of the people and the pain they suffer. Harriet said:

... I was in too much pain and had to just stay in bed sometimes.

[...]

To explain, I was totally deformed, I was all off to one side. If I was lying on my side in bed, my rib cage would touch my hip on one side. The back pain wasn’t even the worst, my chest hurt a lot. My doctor said it was referred pain which meant that other parts of my body were getting hurt because my body was leaning on them. That just totally freaked me out. The girl who I ended up sharing my room with in Crumlin, her organs were being crushed for the same reason. You are always thinking worst-case scenario, you know, that you might end up in a wheelchair if something goes wrong. It's not fair to live [in fear] like that when there is a treatment for it.

She also referred to a meeting with a consultant who told her there was no timeframe for the surgery and "it could be two weeks or it could be 5 years."

There are serious issues going back - that was the 2017 report from the Ombudsman for Children. In that report, the ombudsman said the previous spinal surgery waiting list targets were "totally detached from the reality of this condition, and the suffering it causes to children." The ombudsman recommended that no child wait more than four months. The ombudsman said in the report that children were impacted "both psychologically and physically" and that it was a violation of their right to health. In response, the then Minister for Health, now the Tánaiste, Deputy Simon Harris, promised that no child with scoliosis would wait more than four months for surgery, a commitment that was never honoured.

Then, CHI was established in 2018. It has been dogged by controversy from the start. We have heard about grave failings in governance, oversight and internal communications that have never been addressed. Patients and staff have been repeatedly let down by mismanagement and chronic understaffing. It clear from what we have heard this evening and in the report that there are massive cultural issues in CHI. We have also heard it from whistleblowers. We should not be dependent on whistleblowers to expose these issues. That points to the real failure within CHI and in the culture of the organisation. Children with spina bifida and scoliosis in particular have been failed time and again. Their parents have lost all faith in the organisation. I met a group of parents recently. Úna Keightley, one of the parents, said that parents had "been forced to become campaigners, researchers and watchdogs." Parents should not have to go to the media to tell their stories or to become experts in children's medicine. Parents and their families should not feel sidelined and ignored. If we are to have a truly child-centric approach, children's views and concerns must be taken on board. Parents I have met describe the constant battle, the toll it takes on their wider families and the real impact it has on them. There are serious issues in the culture and operation of CHI and how it interacts with families. I think the Minister mentioned that in terms of communications. There are deep concerns.

That takes us to the HIQA report, the latest in a litany of reports detailing the failures of CHI and the impact on vulnerable children. The HIQA report sets out the serious failures in governance, oversight and communications. As we know, three children had unauthorised springs implanted in their spines. According to the HIQA findings, the non-alloyed springs used in those surgeries were known to corrode in the presence of moisture and there is very limited information available on their use or the risks of those used for implantation. These springs should never have even made it into the surgical theatre, let alone the bodies of children. How was this allowed to happen? Where are the ethical safeguards? It is clear these children have been utterly failed. HIQA found the arrangements in place for the use of medical devices and surgical implants were not standardised across CHI and there were unclear lines of reporting and accountability.

The report also found that culture and communication continue to be major issues across CHI, which has been reviewed in great detail in its external review of spinal surgery. Despite being commissioned in September 2023, there is still no definite timeline for the completion of the second review. Parents are still receiving letters telling them their children's cases will be included in the review. The 19 recommendations in the HIQA report must be implemented by CHI and the HSE. I would like to see a timeline for the remaining actions. The Minister said many had been done but I would like to see them set out.

The failings in that regard are by no means historical. They are live and real. It is important to keep an eye on the number of children waiting. CHI's active spinal surgery waiting list increased month on month from 108 in December to 137 at the end of last month. I agree with the Minister; it is about the length of time people are waiting, not necessarily the number. Some 48 of those children have been waiting for more than six months, a 33% increase since December. The previous Minister for Health promised that no more than 20 children would wait more than four months for spinal surgery by the end of 2024 as a result of new initiatives such as surgeries abroad. Surgeries abroad do not suit everybody, particularly in more complicated cases. There is concern that some complicated cases are being left to get worse. In a reply to a parliamentary question I submitted, CHI set out that nine children had surgeries suspended for clinical reasons. Of those, four had been suspended for more than 18 months. Will the Minister shed some light on these cases? Why are children's surgeries being suspended for such long periods? There is concern among advocates and families about those complicated cases. It needs to be addressed and discussed further.

Like others, I have concerns about the National Children's Hospital and CHI into the future. There are serious questions about the governance of CHI and its ability to manage the hospital safely. This critical infrastructure has come at huge cost, which more than doubled from €987 million in 2017 to approximately €2.2 billion. The keys must be put in a safe pair of hands. We have seen multiple controversies, including long waiting times for scoliosis surgeries, delays in appointing a new chief executive, concerns about money earmarked for scoliosis surgery being spent elsewhere and a lack of preparedness for the new hospital on many fronts. Two more reports are to be published on CHI. We still have concerns about workforce planning and guarantees. Does the Minister still have faith in CHI? Does she have faith it will run this hospital well? There are serious questions in that regard. We need to consider this issue, given the litany of failures, all of the scandals and the cultural issues set out in report after report spanning years, with more to come. We need to give serious consideration to this matter.

It is clear that children and families have been let down time and again. There are serious issues. I do not feel reassured that more will not be exposed. There are pending reports. We have concerns about the best operation of the new children's hospital. We have to get this right. It has to be done well. It is a huge investment. It is so important for the children of Ireland, patients and sick children. We have to ensure the best governance and standards and the right staff and culture in an organisation that will be critical for the next number of decades. It needs greater consideration. The health committee could examine this issue in more detail and bring CHI before it once we get up and running.

I thank the Minister for the time and space to discuss the issue.

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