John McGuinness (Carlow-Kilkenny, Fianna Fail)

This scandal has gone on for years under the noses of the Department of Health and all those involved in what should have been the management of a serious issue. Nothing was really done during those years to encourage parents to engage with consultants and hospitals to ensure there would be early intervention for them. We have seen failure after failure and nobody is held to account. In that time, we have seen significant money being allocated to the Department of Health and all to no effect. We are now talking about more action and more people being involved in the management. This is a failure of the Department of Health and those who work in administration of the hospitals and so forth, and a failure to look after young people who deserve a hell of a lot better.

I cannot express my position any better than Claire did when she wrote to me about her son, Darragh:

At Darragh's outpatient appointment in November 2024, I asked directly whether he could be considered for surgery in New York, London or the Blackrock Clinic. I was told emphatically "No". In the months that followed, Darragh underwent all required pre-op assessments, which were completed and signed off in early 2025 confirming he was ready for surgery and despite that, no date was set for that surgery and no further information was provided. His clinical plan was for surgery to take place before Easter 2025. That was considered the timeframe for the best possible outcome. That is why it mattered. This is a child that has already been brought through so much. He deserved the chance at a best outcome, but that chance has now been lost. As a result of the delay to surgery, Darragh's spinal condition has progressed. He now has a worsening lower curve while the upper portion of his spine has become auto-fused. At his most recent appointment, I was informed that the section of the spine can no longer be surgically addressed due to its complexity.

I find it harrowing that a mother would have to look at her child going through this and then for that child not to be able to have the surgery that is required. Claire goes on:

To make matters worse, I have learned that visiting spinal surgeons from Morgan Stanley were in CHI, not only on 31 March and 1 April 2025, but also in December 2024. These were at least two clear opportunities to put Darragh forward for potential care on an international pathway and both were missed instead. When we attended the clinic on 3 April, we were told plainly that there is no date and there is no timeframe for surgery. That is not waitlist management. That is abandonment.

I agree absolutely with Claire. I have mentioned Claire, but there are many mothers like Claire and many sons like Darragh fighting to have their cases heard and to have the surgery that would make life very different for them. Claire continues:

I also know that not one child under the care of the Temple Street service has accessed surgery at the Blackrock Clinic via CHI in the past years. That is a deeply troubling fact. It means that a large cohort of children, entirely based on the CHI site they attend, have had no access to major outsourcing initiatives. This is not equity. This is not national planning. This is exclusion. This causes a fundamental and urgent question. What is the pathway for access to Blackrock Clinic, Morgan Stanley and Great Ormond Street Hospital? Who decides which children will be selected? It feels like my lovely son was simply overlooked, forgotten and that is something no parent should have to live with.

I can point to a second case, again in Kilkenny, in which the operation was carried out in 2004, which Deputies might say was a long time ago. Conor was seen in 2004 when he was four. Then in 2009 he had surgery. In 2013, he was seen again. Surgery was promised in 2014. Now he is starting to fall out of the system and he has still not got the surgery required for the problems he is now experiencing. I want the Minister to take note of this. When his mother went about getting the information from 2009 and the various other dates from then to now, she was made to ask for that information through all kinds of avenues. She got little or no help. No one reached out to her. No one understood or wanted to understand what she was trying to achieve. Now, this young man has carried the problems of his childhood through his teenage years to his life as a young man. How is that right? There is nothing the Minister can say to these parents this evening that will satisfy them in the context of dates and times and the reduction of the waiting list. However, I encourage her to read her emails. These emails have been sent to her by the parents. I urge her to respond, engage and prevent further pain for the families.

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