I welcome the Minister of State. I welcome the opportunity to speak on the proposed regulations under the Data Protection Act 2018 and the scoping exercises that will be under way in 2026. Right now, children with spinal bifida and scoliosis are being failed, not just in care delivery, but in how their needs are defined, measured and, ultimately, understood.
I have been in touch with patient advocates and advocacy groups on this issue. There is significant pain and frustration about the scandalous failure to treat children suffering from spinal conditions. Children with spinal bifida and scoliosis often present with overlapping multifaceted needs, including orthopaedic, neurological and psychological needs, but far too often, they are treated as if they fall neatly into one category. They simply do not. When complexity is not properly defined and accounted for, it is not prioritised, and when it is not prioritised, children and families are left waiting. In terms of an inquiry, they could also be left being excluded.
One of the most glaring issues is the absence of a clear definition of "complexity" when it comes to scoliosis. I would love to know what the departmental guidelines will be in relation to this scoping exercise around defining what complex scoliosis actually is and means as a condition because that definition does not currently exist. Without that definition, there is a real risk that many of the families will be left out of the inquiry, so it is vital that that definition be agreed upon with patient advocates and that it be both comprehensive and inclusive so that the inquiry reaches the widest number of affected children.
I want to address the ongoing issue of waiting lists. There has only been a drop of four in the last year, so there are still 229 children on the waiting list for surgery. At the same time, the number of children who have a date for surgery has dropped from 16 to 11 and the number of surgeries carried out has dropped from 87 to 68. Those figures are shocking when we are committed to improving the waiting list management. What is the reason for this and why are the HSE and CHI so unable to address the issue of waiting list management? It is clear that waiting list management still has not been grappled with and addressed in any meaningful way. How can parents have any faith in the upcoming inquiry when the management of waiting lists cannot be managed well and when they remain totally untransparent? Are CHI and the HSE actively identifying children who fit the criteria for outsourcing care overseas?
We already know what waiting means within this context. It means pain. It means deterioration. It means a child's condition becoming more severe, more difficult to treat and more life-limiting. Of course, as in the horrific case of Harvey Morrison Sherratt, it can mean death. This month, we already heard about the tragic death of Chloe Maher. Chloe did not receive the surgical treatment she needed in time and she aged out of the child system and entered into the adult spinal treatment system. Chloe may have died as an adult, but it was the failure to provide her care in a timely manner as a child that ultimately will have led to her death. It is, therefore, essential for Chloe and every other young adult who has aged out of being considered a child and who has aged out of children's healthcare that they be included in the terms of reference of this inquiry, as the failure to treat them as children led to their deaths or the complex conditions they now have as adults. I also want to extend my condolences to both Chloe and Harvey's families today.
Waiting list management is not an administrative issue. It is about clinical urgency and fairness. The current approaches have failed to reflect the real progression of conditions like scoliosis. A child can move from moderate to severe curvature of the spine within a matter of months, yet they remain in the same place on the waiting list. The waiting lists are not adapting quickly enough. They are not adapting to clinical needs and changing sufficiently. They are not sufficiently dynamic and they are not responsive. Crucially, they are not transparent enough for families who are left in the dark as to where they stand on the waiting lists and what comes next for them.
I welcome the inquiry, but there are concerns about the ability of CHI and the Department to do this right because up to the to this point, there has been a chronic lack of transparency and there has been obfuscation from CHI to families. With the paediatric spinal task force for waiting lists that was established 2024, there was some hope of answers and clarity for families, but what have we got to show for it? No final report has been published. No recommendations have been issued. There has been no public update since May 2025. There has been no communication to families. The task force now appears to have been replaced by an internal group within CHI, but for this new group, there are still no terms of reference that have been published and no clarity on governance or accountability around it. It feels like it is more of the same when it comes to transparency and accountability for families. There is still no clarity on how the waiting lists are being managed. That is why it is so crucial that we address this when it comes to the new inquiry.
The Minister committed to an equity of access audit on spinal surgery waiting list management. That was due in November 2025 and I believe it is still not published. This audit is critical. It goes directly to whether children are accessing scoliosis care fairly and based on clinical need. The Nayagam report was published to deal with springs placed in children. The first stage was completed, with 91 children reviewed and over 60 children needing follow-up. That report has still not been published. The Department said it wants to publish that. It is now subject to an injunction, so it cannot be published. May I have any comment on whether the Government is challenging that injunction? What steps are in place so that the parents and children can have clear access over that review? It is really crucial. It needs to be published.
These are only some of the issues surrounding around openness and transparency that have completely eroded trust among parents who have children with scoliosis and spina bifida. Trust is broken. I am sure the Minister of State can recognise that. When we go into this new inquiry, we must consider how to build trust so that there is a sense of this inquiry actually delivering answers for people. Is there any reflection on what safeguards will be put in place to ensure this new inquiry will not have an injunction placed on it? Is that something that is going to be inevitable? Are there any safeguards we can put in place to stop that so that when the review is finalised and when the inquiry is done, it can be published?
There is also a critical piece around the Nayagam report. It is very difficult for parents to meaningfully engage with the terms of reference when they actually do not have that review. I understand that the Department is engaging with advocacy groups and parents so that they engage in the terms of reference, but if they do not have access to that information and if the Nayagam report is not published in advance of those terms of reference, can they meaningfully engage with the new inquiry? I would say they cannot, and that is a big problem. I do not know if we can really ask them to engage. It will feel like a box-ticking exercise if they have not received and been able to analyse the Nayagam report in advance of that.
I want to touch on the issues around inquiry design, including how we design the scoping mechanism and what the inquiry is going to look like. If the inquiry is to have any credibility, it has to include the voices of the most affected. That means children themselves in an age-appropriate and rights-based way. It means their families, who are often forced to become full-time advocates simply to secure basic care.
It means the inclusion of children who have aged out of the child services they needed. It also means the inclusion of advocacy groups that dealt with this issue for years, and long before it received any political attention. Their voices need to be heard.
The term "direct engagement" has been used by the Department in referencing the scoping exercise, but what does that really mean? It sounds great in theory, but there is a real risk of it becoming tokenistic, particularly when parents have not had access to previous reviews. This engagement is happening without sight of the report from the task force or of the previous reports that remain unpublished. How can we have meaningful engagement when those reports have not been published? How can we seriously ask advocates to co-develop the terms of reference when they do not have access to these reports?
We all know that there is deep and growing frustration among families about responses from CHI. Too often, engagement has been dismissive, slow and very disconnected from the urgency of the children's clinical needs. This has also contributed to the erosion of trust. Rebuilding that trust requires more than words. It requires meaningful change. There remains a question around the definition of "mediator" in the context of the inquiry. We are using the term "facilitator." I understand that there is no legal definition or statutory basis in Ireland for the term "facilitator." I wonder why we are using the term "facilitator" as opposed to that of "mediator". Why are we are not using something for which we have a statutory basis? The Minister of State might speak to that.
Patient advocacy groups were promised a collaborative approach in the selection of the mediator. However, it seems that the mediator - and I think he is somebody who has got great qualifications, so it is not a question of querying any of that or of querying the individual himself - but it was not done collaboratively with the patients. It was done without any prior discussion, and the parents and advocacy groups believed that they would have engagement on the selection of the mediator. Now, we have a facilitator who has been appointed without their input. Again, this creates a dynamic of erosion of trust. As we move forward with the scoping exercises and the inquiry, we really need to get the fundamentals right. We need to define complexity, clearly and clinically, when it comes to scoliosis. We need to include the voices of children, families and advocates in shaping this work. We need to fix waiting list management in order that it reflects real-world progression and urgency of clinical needs. We need to have all of these reports and reviews published up to this point, or else it is meaningless. We are going in blind into this new inquiry. We will be duplicating and will not be getting the best for the patients.
Regarding the scoping exercise for the survivors and victims of Michael Shine, it is crucial that their voices are heard. Michael Shine's actions are a stark reminder of the devastating consequences that arise when trust in our healthcare system is profoundly violated. The survivors deserve dignity and protection after their rights were utterly violated under his care. The impact on survivors has been deep and enduring. It caused long-term psychological trauma. Their courage to speak out has highlighted their personal suffering but has also exposed serious failings in oversight and accountability, underscoring the urgent need for a survivor-centred inquiry and to ensure that this does not happen again. There is one individual involved, but we must consider the questions of accountability, oversight and governance. We must also consider how this happened and how we can stop it from happening again.
