Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)

I thank the House for the opportunity to discuss what is a most important issue to all of us.

At the outset, it is important that I clarify a technical piece in relation to protected disclosures and how they work. I am conscious that it was the subject of debate among the leaders last week, which I totally understand, but it is important that the House has clarity on it. The Protected Disclosures Act was agreed by this House without a vote. Everybody supports the idea of it and the purpose of it is to protect whistleblowers. It creates an obligation on the Minister to establish a channel on their website and an email process for whistleblowers to be able to make disclosures. That exists in the Department of Health. On the website, it is very clear that this is a channel to reach the protected disclosures commissioner. It is a separate, dedicated, secure mailbox, one that I do not see or have access to, nor do my private secretaries. The purpose of maintaining that separation is exclusively for the protection of whistleblowers. I know it was mentioned that this represented a lack of curiosity on my part but I would say to the House that if I or any other Minister were to start checking what is coming into the protected disclosures mailbox, it would create a completely new and different problem for whistleblowers. It would undermine the idea of there being a protected channel specifically for that. I know the House is already aware of that because of its support for the Act but I wish to put beyond doubt the need to protect whistleblowers and the reason for those steps. It is not, in fact, something that comes to a Minister's desk, nor should it come to a Minister's desk. It should be investigated separately and appropriately. If we had a Minister like me or anybody else who was interfering in a curious sort of way in what was in the mailbox, that would raise important confidence issues in that Minister. It is important to be clear in relation to that and I thank the House for indulging me in that way.

Much more importantly, on the question of paediatric spinal surgery waiting lists, which is the subject of our discussion today, I wish to thank all the Members of the House who have engaged with me on this in the past number of months since I became Minister for Health.

I have tried to place a significant and systemic focus on productivity, generally in our hospitals, but in this most acute area of need of pediatric spinal services. All of us do this because we are concerned about the children on whom this impacts. We are concerned about their quality of life, the nature of the supports and interventions they get and the necessity for those to be timely. In particular, I thank all of the patients, families and advocacy groups I have spoken to at different times throughout this year because, while we speak about numbers, initiatives and reforms what we are speaking about, of course, are children - patients - many of whom have quite complex medical conditions, a multiplicity of medical conditions, and who need very great care. I want to assure patients and families I have heard what they have said to me and that their perspective is vital in ensuring the reforms we know must be ongoing to ensure better, timely care.

I also say to Members of this House that I, like them, am the recipient of people coming to me with complex cases; cases where there is a sense that intervention is necessary now, that intervention has been too late and that there is a difficulty with communication. In my case, as Minister, I can take those cases up with the National Patient Safety Office and have them advanced and I know that has been the case with some of the people who have come to me and brought cases to me. I wish to say to Deputies that there is an open invitation to my door to anybody who wants or needs to bring a case to my attention. Deputies will appreciate we do all of this scheduling in a particular way and it is not perfect. Tomorrow I will be meeting CHI on two issues. One is the children's hospital and the second is yet another meeting in relation to what is happening on spinal services and what has happened since our last meeting. One of the things I will want to look at most closely is the specific care plan for all of those children who are at the level of most complexity in the system. There are certain GDPR constraints to the information that can be shared with me but I have several cases on my desk, as I know other Deputies have. There is a real openness here to get to an understanding that the most complex children can get the care and intervention they need in a timely and appropriate way. I want to say that as a general opening statement and invitation to all.

As we know, scoliosis affects about 1% of children and adolescents in Ireland. Many of those children do not, in fact, require surgery but for those who do, timely access to intervention and treatment is critical. For those children who need surgical intervention, we agree the waiting times are too long. I am acutely aware of the burden that long wait places on those young patients and it can make their situation very much more difficult.

Improving access to spinal surgery has been the focus of sustained and determined efforts over several years by several Ministers for Health and we have not fully reached our goals. I want to acknowledge that the efforts that have been put in so far have yielded tangible progress and I also acknowledge the dedication of the nursing team, the healthcare professionals, the multidisciplinary teams and, indeed, the surgeons who are delivering better outcomes than we have had before. In this House, we are dealing with patients on a day-to-day basis and we know we need to go further and do better.

There has been a significant focus on investment for those services. There has been new infrastructure. We have a fifth theatre in Temple Street, an additional MRI scanner in Crumlin, and 24 additional new beds. In 2024, my predecessor ensured 52 new full-time equivalent posts were approved to strengthen services, including surgeons, nursing staff, administrative staff, and all of the different pieces of that, including four orthopaedic surgeons, one of whom has been in post since August of this year. Of course, we would like to recruit all four but we have only been able to recruit one to date. Some 41 of the 52 staff are in post and we are actively trying to recruit the rest, especially at consultant level.

It is important to say we have tried to increase capacity in a range of different ways, both domestically within CHI and internationally. Let me address some of the complexities of the issues I have seen as Minister. For example, in 2024 we agreed with the Mater hospital that it would conduct an enhanced transitional service, adding to the transitional services already in place, and indeed it was funded to do so. An additional 29.5 posts were approved for the Mater hospital to enhance the adolescent transitional spinal service and try to improve the seamlessness with which transitional care would occur. It was only at the beginning of the second half of 2025 that this service began to operate, which I think is deeply regrettable. I know from my engagement with patients and parents that the service is, in fact, operating, and that there have been, I think, four outpatient clinics to date in the Mater during the second half of 2025, and three surgeries have been scheduled. I believe it is problematic and regrettable that that intervention and step taken by my predecessor in 2024, for which posts were allocated and funded, in fact only began in 2025. It is now the case that those posts are all in recruitment because the service has begun and there has been a commitment by the Mater for that to begin, and those posts should all be fully in place during the first quarter of 2026.

On international outsourcing, again my predecessor approved over €16 million for international outsourcing initiatives since 2024. That was designed to support earlier surgery for children with very complex cases to get the care they needed abroad as clinically appropriate. However, it is a source of great frustration to me that a total of only 19 children have been the beneficiary of that. It is a source of frustration to me that the number is not higher and it is a source of frustration to families who would like to travel and who either have not been offered the opportunity to do so or who believe they would have been suitable. I acknowledge that not every child is suitable for travel. There may be some for whom it is not suitable or who cannot travel. There is a tension here where I believe more should be done but there is a clinical element to those decisions and it is not appropriate for me, as Minister, to interfere with that on an individual clinical basis. Yet, when I look at the system, what I see is 1,000 surgeries, essentially - 500 last year and slightly more than 500 this year - available for children who have needed surgery and in the period of 2024 to 2025 where the international outsourcing option was available only 19 of those 1,000 surgeries have been done internationally. From a systemic perspective, that does not ring true to me. That has been the case to date but we are trying to expand our international options to drive even further the opportunities to travel, both in Europe, and for additional surgeries in the United States. At the moment we have the New York-Presbyterian Hospital and we have Great Ormond Street Hospital but CHI has gone through a tender process during the past number of months, at the direction of the Department of Health and at my direction, to try to expand opportunities internationally. That is bring finalised shortly and I believe it will involve multiple additional hospitals.

The point I am making to the House is that if the experience to date has been that there has been an international option but it was not available to patients at the rate that might be suggested with 19 out of 1,000, then it is essential that if we are providing additional international options, that there is a very clear understanding those options can and should be used. That is extremely important.

From an operational level within CHI, the pediatric spinal surgery management unit was established last year. It is a dedicated unit to try to co-ordinate surgeries better across Temple Street, Crumlin and Cappagh hospitals. It is working more closely with multidisciplinary teams to do that. Efforts to expand capacity within CHI progress and, indeed, will be the subject of my dialogue with it tomorrow, including ring-fenced theatres and dedicated orthopaedic beds. To be fair, that implementation has in fact reduced the waiting times for spinal surgeries in general. Additional outpatient clinics have also begun to assess new patients more promptly and that is both necessary and helpful. Since April 2024, over 800 new patients have been seen in those clinics and that has reduced the time to be seen by a consultant in addition to the dedicated referral pathways.

Domestic outsourcing arrangements have also been expanded, using pathways to Blackrock and Cappagh more quickly for non-complex spinal procedures. Over 74 children have used those pathways since the beginning of this year. As I said, we have tried to expand the international option.

In regard to these initiatives and investment, while I have expressed a measure of frustration with the pace and wanting to do more, I need to acknowledge all of the dedicated team - the nurses, anaesthetists, surgeons and so on - who are doing the work and that there are surgeries happening . We know children are getting surgeries and it is at an increasing rate. In 2024, CHI performed 513 spinal procedures, which was a 10% increase on 2023 and 35% increase on 2019. Already in 2025, 446 procedures have been completed, which is an 8% increase on last year. There is growth and there is more activity. Also, this year there has been an 8% increase in referrals and at this time we are 7% behind target. So, the picture is yet to improve but there are also an increase in referrals.

What matters most, of course, is the length of time that children are waiting on the procedure. There has been an improvement in the longest wait lists. At the end of October 68% of patients on the active list were waiting less than six months, which is an improvement on last year, which was 56%. Further, at the end of October, only 6% of patients were waiting 12 months, which again is an improvement on 16% at this time last year. Again, at the end of October, 38% of patients were waiting within the Sláintecare targets, although I would like that to be substantially increased. I will acknowledge all of the difficulties, the challenges and frustrations that I have but I will also acknowledge the progress that has been made and which we want to see continuing to improve. I am also seeing improvements in the outpatient wait list. The children without an appointment to date on the new outpatient waiting list has reduced by 48% since the start of the year. I am informed by CHI that currently there is no child waiting over nine months without an appointment for a new outpatient appointment. That improvement is ensuring children are seen more quickly.

While we absolutely must acknowledge progress, we also cannot mask the ongoing reality that too many children are still waiting and that too many children with complex cases are still waiting. Up to the end of October this year there have been an additional 462 children, or 8%, who have been added to the active surgical waiting list. It does reflect a growing need and it reflects a better referral pathway, but it is still children who need spinal surgeries. There is also a shift in the complexity of cases presenting at CHI because non-complex cases are now being referred to other hospitals to be done more quickly. That in itself is a good thing. I am, however, concerned about the children with complex cases who may need several procedures and who may need very significant multidisciplinary support.

I am also concerned about the communication. This is something that families have repeatedly expressed to Deputies across this House as being very challenging for them. I have made it clear that the nature, the style and the promptness of communications has to change. The way in which families are discussing surgeries, surgical interventions and the overall plan for their child is everybody's responsibility, and it is not to be approached in a siloed way. It is difficult for us to build a new theatre and to recruit a new surgeon, to be fair, but it is not difficult to pick up the phone to talk to somebody properly and in a comprehensive and timely way about the needs of their child. These are things that can be done and I have said this in the House before. To support improvement, we have appointed a spinal patient advocate liaison co-ordinator. There is a patient panel for spinal services to try to improve communication. There are 14 members on that panel at the moment. A key worker, or patient advocate function, is also being rolled out. I am saying to Deputies that there have been efforts made to try to improve communication. While I understand from parents that the benefit of this is not yet universal, steps are being taken and we have more work to do on it, which, essentially, is what I am trying to say in a truncated way to make the all of the points that I hope to make.

I will address some of the different reviews and issues that are occurring more broadly in CHI historically. Of course what we want is to have a future-looking system where everybody has confidence in the system. The difficulty with the issues of the past is that they must be addressed, there must be transparency, and it is very important to acknowledge that, while we try to look to the future and try to improve services, we also have to hear and understand the experience of the past and difficult experience of the current day. In April I stood in this House and we discussed the HIQA review of the governance of implantable medical devices in CHI, including the use of non-CE springs in Temple Street hospital. A month later we were here to discuss the Thomas independent external medical audit for Children's Health Ireland and pelvic osteotomy. At an early stage in April, I had a very clear concern about the culture in orthopaedic services, as I know Deputies across the House had, including the way in which waiting lists have been managed to date and how that has operated. A month later we had the 2022 report, the unpublished report, and the Nayagam review is also under way, phase 2 of which is reviewing the service, including the governance. There is a series of different reports and I am conscious that, behind every one of those reports, there is a patient and there is a child.

In response to the multiplicity of reports and in response to the concern I have about the culture and the waiting list management, I commissioned an audit the details of which we have not yet received. It is very important that we debate this when we do receive it. That audit has two elements. I commissioned this via the CEO of the HSE. It consists of an audit of governance and of equity in patient access and waiting list management, and that commenced in June. The audit is being undertaken by the HSE internal auditor. It is independent. I am told it is nearing completion and I expect the outcome shortly. It is really important to note that, at the time, I also asked for there to be a qualitative patient experience element to this. I asked Lily Collison, who is an advocate for spinal services, cerebral palsy and epilepsy, and who is, among many other things, a member of the HSE board, to complete that. Ms Collison has been in CHI this past number of months doing a survey of parents, speaking to parents who wish to speak to her, and trying to better understand the patient experience by asking how they ended up on a waiting list, what was their experience and what has happened to date. I expect her report shortly. I did not publicise her name at an early stage because I wanted to give her the opportunity to get on with her work in a quiet and effective way and to give her the privacy to do that. It is very important to say that we did both of those things at that time. I expect to have that report very shortly.

I will not address the spinal task force, which continues its work, as it is a question of time, but I do want to talk about the inquiry the Cabinet agreed to yesterday. It is our intention to have a statutory public inquiry into the care generally received by children with scoliosis, complex scoliosis, spina bifida and hydrocephalus, and the care issues around that. It is really important now that I become extremely careful with what I say about the detail of that. I am conscious that we want to establish a process that is legally robust and that has very clear terms of reference. We have asked the parents, the advocacy groups and the breadth of stakeholders, including the advocacy groups that are on the spinal task force, to engage with a facilitator who will help and listen to understand the best scope and help develop a proposal to me so I can properly draft terms of reference and have those agreed by the Government . It is the intention to do that with families in the most appropriate way, recognising that it is, of course, the Government and the Oireachtas that will have to ultimately sign off on them. The Attorney General is already engaging with potential people and potential names, including senior counsel and so on, to determine who may have availability to do this work and to get that going as quickly as possible. Of course, the calibre, the quality and the experience of the people we want to do this work is not always immediately available tomorrow. They have schedules and commitments already, so we are trying to do our best to get somebody as quickly as possible but also who is as capable as possible for doing that.

I am very conscious that my colleague is going to speak and I do not wish to speak across her. Perhaps I can address any questions that Deputies have in my concluding remarks. I am conscious there will be a lot of interest in that.

We are continuing with the journey in relation to the integration of CHI into HSE. I am not sure I have had the opportunity to formally update the House in relation to the board members who have been appointed or the chair being confirmed by Cabinet last week. That work is ongoing. We will need to now prioritise the legislative element of that and bring it to the House, I hope in 2026, to begin the process of making that transfer more formal. I wish to give my colleague the opportunity to speak now.

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