Jennifer Carroll MacNeill
Fine Gael recorded as Minister for Health (Deputy Jennifer Carroll MacNeill) As a minister Link to thisI welcome the opportunity to address the House on the independent Report on Children's Health Ireland Inquiry into Spina Bifida and Complex Scoliosis Scoping Exercise by Mr. Remy Farrell, SC. More importantly, I acknowledge the group of people who are here today in the Gallery, who have advocated for some time about complex scoliosis and spina bifida. In that context, I want to first put this conversation in the context of the lived experiences of patients and families who have been in Children's Health Ireland, CHI, in many different contexts and who have not had the care they deserved.
For many children living with spina bifida, scoliosis or hip dysplasia more recently, and for the parents and families who care for them, everyday life involves significant challenges, uncertainty and worry. Mr. Farrell attempts to captures the real pain and frustration parents have felt for a very long time. I want to acknowledge that here today. I also want to acknowledge that for so many people I am very aware that any process that this House or the Government progresses will not alleviate pain and will not alleviate the past. What the Government and the Oireachtas are attempting to do is to bring together a structure that enables the investigation of the systems that enabled any of those extremely difficult outcomes that many parents, families and individuals have had to face.
As a consequence, I appointed Mr. Remy Farrell as the independent facilitator for a scoping exercise in order to examine how we might progress to a statutory inquiry. I recall from meetings with advocates on complex scoliosis that they had two requests, the first of which was to bring CHI into the HSE. Legislation is being progressed with a view to that being completed by the end of 2027. The second request was to have an inquiry into the events that had led to extreme difficulties for their children.
Mr. Farrell was appointed to scope the content of potential terms of reference for a statutory inquiry, in consultation with stakeholders. The process was designed to ensure that when an inquiry is established, which has been our intention, it has structures and parameters that reflect the needs of children and families, and that they are grounded in evidence, are timely and efficient and avoid duplication with existing statutory or clinical processes.
Following his appointment in March, the facilitator initially wrote to stakeholders to introduce himself and to invite them to meet with him. The facilitator had various engagements with patient advocate groups, families and a number of clinicians, CHI and HSE management and the Department of Health. His engagement included both written correspondence and meetings.
At the beginning of June, Mr. Farrell wrote to stakeholders inviting them to make submissions or observations in relation to the various issues and set out his initial thoughts on any proposed inquiry. He again wrote to stakeholders, including all advocacy groups, on 7 July regarding an extension of time, which he requested to enable him to have further engagement. I granted this extension to him in order to give him the opportunity to continue engaging and re-engaging with them. That is in part because there were some groups that chose not to engage at that stage, and because there were other groups and individuals who came to him at that stage. For both of those reasons, he asked for additional time. I acknowledge the bravery of those who chose to talk about their difficult lived experiences. I also respect and acknowledge that not everybody did. Everybody's participation in different ways added to his understanding of the essential human perspective of the varied and very different issues. I hope he has acknowledged that in his report in a way that reflects people's participation in it.
Mr. Farrell submitted his final report to me on 9 September. I am grateful to him for the professional way in which he has conducted the scoping exercise. His work brought structure and clarity to a broad set of issues and concerns which required considerable sensitivity. As Members of the House will be aware, Mr. Farrell has recommended a commission of investigation covering four defined modules on waiting lists, spinal surgery, hip dysplasia and the important group of children who were not transferred to Temple Street post 2008.
Mr. Farrell has recommended a commission of investigation over the other statutory model, a tribunal of inquiry, based on his view that a commission can deliver the same core statutory powers as a tribunal while being better suited to the specific subject matter of the inquiry, namely the medical treatment of children. A commission can compel witnesses to attend in the same way and compel the production of documents and a final report will be published. Crucially, a commission also enables a measure of public hearing. It is important that there is an opportunity for public hearing - the difference being that a commission also enables a private element as well, whereas the default in a tribunal model is necessarily public.
In relation to the module on waiting lists, Mr. Farrell recommends two submodules. The first is a personal-family statement submodule and the second is a submodule in relation to the response of CHI management to waiting list issues. In the distinct personal-family statement submodule recommended by Mr. Farrell, parents and children would be asked and invited to give testimony in relation to their experiences regarding the impact delays and management of waiting lists had on them. It should not be confined to any specific hospital but to CHI generally. Insofar as the module relating to waiting lists is concerned, Mr. Farrell makes clear that he includes the National Orthopaedic Hospital at Cappagh. His recommendation is that this module be conducted on a non-adversarial basis. This a module that has the opportunity to be in private, public or by written documentation, essentially at the discretion of the individuals involved, enabling an important measure of choice.
Regarding the second module, on spinal surgery, his recommendation is that a commission should inquire into the response by CHI to delays and management of waiting lists for spinal surgery or assessment across CHI. It should also inquire into how funds allocated on foot of the scoliosis and spina bifida action plan 2022-23 were spent. It should also inquire into the circumstances surrounding five urology clinics and whether they complied with applicable NTPF rules. While Mr. Farrell does not recommend that the issues covered by the ongoing Nayagam review and by the completed HIQA report should be inquired into, a discrete issue regarding the latter does arise. Mr. Farrell recommends that a commission should inquire into whether the management of CHI was aware of the use or intended use of non-CE marked springs in surgeries undertaken by consultant A between 2020 and 2022.
In relation to the module on hip dysplasia, Mr. Farrell recommends that a commission should inquire into the surgical threshold for developmental dysplasia of the hip, DDH, that was in operation at Temple Street and Cappagh. This module should consider whether the threshold was appropriate and justified, the reasons for any deviations from the threshold and the response and awareness of management to this. He recommends that this module should await the outcomes of the external expert panel review before it commences its work. For DDH, the HSE has established a separate process in relation to retrospective reviews to determine the indications for surgery. This is known as the external expert panel review, as I said. The independent expert panel will review patient files to determine, insofar as it can, the appropriateness of the original decision to operate in individual cases based on the appropriate radiological indices and clinical history informing that decision.
Lastly, he recommends that a commission should inquire into the care received by the group of patients who were not transferred from Crumlin to Temple Street following a HSE decision in 2008. He recommends that a commission should consider the experiences of patients and their families within this group during that period and, crucially, the CHI management of same.
It is important to be clear on what a statutory inquiry can and cannot do, and how it fits into the overall legal architecture of places within which we can get redress and remedy. As Members are aware and as Mr. Farrell says in his report, what a statutory inquiry can achieve is primarily the identification of what has occurred in the past. Insofar as recommendations flow from such conclusions, they tend to be at best broad recommendations. A statutory inquiry is not the appropriate forum in which to decide how future children's health should be delivered, managed or resourced. I suggest that is for this House to do. Mr. Farrell makes clear that those matters remain for the relevant executive and legislative bodies to decide. While it might help to improve the understanding of what went wrong in the past, a statutory inquiry cannot itself deliver the operational, clinical or policy changes needed. It is important to make sure that is understood. It is not possible within the legislation or the model of any type of statutory inquiry.
A statutory inquiry is not a clinical process. Mr. Farrell suggests that we do not duplicate or replicate those pieces of clinical examination that are under way and which are appropriate for clinicians, but rather that those findings would inform the work of a commission which would be led by a person who is not a clinician but a senior judge or retired senior judge. Mr. Farrell does not recommend a diagnosis-based inquiry into every aspect of scoliosis care. Instead, he has defined modules by the different issues. A statutory inquiry’s primary role is to establish and explain what happened in the past. It can investigate events, identify failings and make generally broad recommendations. Crucially, it can improve public understanding and provide a moment within which the broader public understands that something happened that should not have happened and attempt to acknowledge that in statutory form, independent of this House and the Government. However, it is not designed to solve complex service delivery problems or implement reforms.
A statutory inquiry is not a vehicle within which we can identify or determine what happened in specific individual cases. There are important separate processes where individual cases can be appropriately examined such as a systems analysis review or, very sadly, in some cases, a coroner’s inquest. Those are the existing legal proceedings for examining individual cases. It is not the function of a statutory inquiry as such. Further, in his report Mr. Farrell suggests it may also be necessary for the inquiry to consider a sampling approach in order to enable a commission to take a view as to what may or may not have occurred in a broad manner. The Commissions of Investigation Act 2004 is sufficiently flexible to permit different methodologies to be applied in the context of any such statutory inquiry including sampling. He gives that opportunity of flexibility for the statutory inquiry.
I am aware that there are calls for a tribunal of inquiry as opposed to a commission of investigation. As I outlined earlier, Mr. Farrell recommends a commission of investigation over a tribunal based on the view that a commission can deliver the same core statutory powers as a tribunal. However, he is also of the view that as these issues deal with the personal and medical information of children who have specific legal protections and given the relatively finite number of children involved, there is a significant risk that children may be identifiable even where anonymised. A commission on the other hand by default is largely conducted in private with the opportunity to go public. In his view, that alleviates the concerns compared with a tribunal which by default is conducted in public and allows for the cross-examination of all witnesses. His concern is that as a consequence of that, a commission may encourage broader participation because there are those who do not wish to be questioned in public, those who may be more willing to share personal experiences and those who may be more willing to discuss concerns, mistakes or experiences more candidly and provide sensitive evidence. For this reason, he favours the commission model over a tribunal model as it enables all of that flexibility.
There is a view among some parents that it should be held entirely in private and among other parents that it should be held entirely in public. Mr. Farrell outlines in his report that although the default position is that evidence received by a commission is received in private, it is by no means an inflexible rule. The Act allows for a witness to request from the commission that all or part of their evidence be heard in public.
I am aware also that there is a response to Mr. Farrell’s report that the commission is too narrow. Mr. Farrell emphasises the importance of having a focused and clearly defined inquiry. That comes from our experience of previous statutory inquires. He notes in particular that a commission operating within precise terms of reference is more likely to deliver findings within a defined or reasonable timeframe. The legislation requires that the terms of reference specify the events, activities, circumstances, systems, practices or procedures to be investigated. The legislation also requires that it should identify relevant time periods, locations, organisations or individuals. That legislation is based on our collective experience of how we managed statutory inquires in the past.
In his work, Mr. Farrell ensured each issue was addressed on its own merits to determine whether further examination was warranted. That involved identifying issues, some of which had been adequately addressed, areas where unanswered questions remain and matters that benefit from further examination through a statutory inquiry. It is not in our collective interest that we do not get an outcome from this inquiry. By that I mean it is important that we set parameters. When we had a debate on this in the past, Members were clear they did not want this to go on in a way - I do not want to say an "interminable" way - that did not get an outcome and was not defined. We have had, as Members know, tribunals of inquiry that lasted up to 12 years in the recent past. That is not in anybody’s interest.
For the module on waiting lists, Mr. Farrell suggests a timeframe from 1 January 2019 to 31 December 2025. For the module on hip dysplasia, he recommends a timeframe from 1 January 2019 to 31 March 2025.
As I have mentioned, Mr. Farrell notes that inquiries work best when they have a defined scope and time. He suggests 2019 as the start date given that Children’s Health Ireland was, I believe, established in December 2018. This is a six-year period that deals with both the period before Covid-19 affected services, during Covid-19 and after Covid-19, allowing for an assessment of the pandemic’s impact on waiting lists and focusing on events related to CHI as an organisation. Crucially, it also acknowledges that disruptions to services and surgeries not happening was not as a consequence of Covid-19. That is why it is so important to have a period in advance of that as well. Waiting lists did exist. Waiting list challenges very definitely existed before 2019, but Mr. Farrell recommends that period as an effort to put parameters on the commission.
The Government has accepted the report’s recommendations and we want to begin drafting terms of reference for a proposed commission of investigation. Officials in my Department will work in close consultation with the Office of the Attorney General in drafting the terms of reference. It is important to me that stakeholders are involved in this process and there will be an important call for input from advocacy groups on the terms of reference. As we have always said, the terms of reference are ultimately a matter for the Government to approve. Similarly, at the same time we have had a process of a commission of investigation into the acts of the paedophile Michael Shine. By way of corollary, my officials are in contact with Dignity4Patients, a group representing victims, in relation to their view on supports for participants ensuring that the commission will be trauma led and trauma informed. We want to replicate that process here. Learnings from that process will enable us to ensure we do everything we can to ensure the establishment of this commission is inclusive, timely and efficient. I know there are concerns that this will take a very long time to set up. Again, as a comparison, Members may be aware that following Lorcan Staines SC’s scoping exercise report, the Government agreed to the initiation of the drafting of terms of reference for that proposed commission of investigation in July. Officials in my Department have been working in the period since and very significant progress has been made in that regard. It is important that every element of this process happen in an expeditious way in order to allow people to have the opportunity to contribute their experience to the commission.
There are a number of different ongoing processes I would like to reference, which are important because they will inform the proposed investigation. Overall, the aforementioned external expert panel review is progressing reasonably well. The panel has completed the testing and validation process and it commenced its formal review of cases in August. A letter to all the stakeholders will issue shortly by way of update, and that work will be completed in 2027. It is really important that this work conclude to be able to inform any next steps and, crucially, a commission.
Separately, we have the ongoing Nayagam review. The chief clinical officer of the HSE commissioned this UK expert to lead an external review of the paediatric orthopaedic surgical service at Temple Street. The review is in two parts. Phase 1 is a risk assessment of the practice of an individual consultant. Phase 2 is a review of the paediatric orthopaedic surgery service at CHI and other specified Dublin hospitals, to include a review of their governance, systems, processes and capacity. That is a much more clinical focus being done by a clinician. However, by way of update, phase 1 has been completed. Mr. Nayagam recommended a recall for clinical review of 62 of the 91 cases examined by him. All of those have been contacted, appointments are being progressed and a number of young people and adults have had their clinical follow-up.
On foot of phase 1, the HSE decided to carry out a wider look-back at the individual consultant’s practice. That will include a review of the patients on whom the individual consultant performed surgeries between 2016 and 2023 in the following domains: all spinal cases, surgical dislocations of the hip, and limb reconstruction cases. Intensive work is under way to establish the number of patients who will be involved in that look-back process. The purpose of that is to detect harm that may have occurred and to ensure a patient is on the correct pathway. That itself may point towards further inquiry.
Phase 2 of Mr. Nayagam’s review is under way and is expected to be completed mid-2027. That phase 2 review is important from a broader clinical and system patient safety perspective to assure on future service provision, especially in the context of the move to the new national children’s hospital.
As I outlined earlier, Mr. Farrell says in his report that a statutory inquiry cannot itself deliver the operational, clinical or policy changes needed. That responsibility lies with me and with us. The Government has recognised and continues to recognise and prioritise families accessing paediatric spinal services, and there has been a significant additional investment to help reduce waiting lists. We are seeing this year in particular and last year that it is beginning to make a difference. The investment and the associated initiatives are focused on increasing capacity across the care pathways and building a much more sustainable service that can respond to the needs of children and their families.
Several initiatives are under way to improve services. We have a ring-fenced theatre and additional outpatient clinics, including on Saturdays, and the outpatient waiting time has gone from about nine months to less than four months. That is important. We have national and international outsourcing pathways to maximise capacity where people choose to use that. We have written and written again to families to offer that. Very few families have taken it up but the offer is an open one if people wish to travel abroad. Further improvements are under way, including the recruitment of additional orthopaedic surgeons, which enables spinal surgeons to devote more capacity to spinal surgery. Indeed, a surgeon was appointed last August, and others who have been appointed are now doing specialist fellowships and will return to the service. Meanwhile, there is locum cover for that. What we are observing this year in particular is an increase in the amount of really complex spinal work, often done by two surgeons instead of one. That has meant the numbers have not been as high but much more complex work is being done. That is the reason for it. We are having two spinal surgeons work together to ensure the complex work is being done rather than being allowed to drift, which is what has happened in the past. We also have a key worker or patient navigator in post to make sure every family has a named point of contact to support them throughout their child’s care, something that did not happen appropriately in the past.
There has been a dedicated paediatric spinal surgery management unit in CHI since 2024, to drive continuous improvement across the service and be responsible for managing the delivery of spinal surgery. It is led by a consultant orthopaedic surgeon, is supported by a wider multidisciplinary team and ensures patients are prioritised correctly for surgery. That does not count, however, unless the surgeons are there to do the work and unless the theatre is available, and I do see improvements this year. One hundred per cent of outpatients are now waiting less than 12 months for a first appointment, which is entirely appropriate. A central referral process has commenced to ensure that patients are seen in the right location, by the right consultant, as quickly as possible. Since international outsourcing started in 2024, 19 patients who were considered suitable for surgery have had it completed abroad. For those 19 patients, 25 procedures were completed. As I have said, we have written again, both in March and August 2026, to patients on the active waiting lists to offer them the opportunity to travel abroad, and that is an open offer.
The recruitment for a spinal registry team is now complete. As I said, however, there are people on fellowships and it is about making sure they are here in the longer term, but we are seeing the impact of the additional surgeons. The CHI improvement steering group is co-ordinating oversight of the range of matters of focus in CHI and it is making a difference. The weighted average wait time for outpatients has fallen to 3.8 months. The weighted average wait time for inpatient procedures is also down in the last 12 months. At my direction, we will continue to have that focus to make sure children are getting the outpatient services, the care and the surgeries they need.
I also want to mention the very necessary work to implement the integration of Children's Heath Ireland into the Health Service Executive, a key ask of advocates. A general scheme of the Bill was approved by Cabinet on 14 July of this year. It has now been published. Pre-legislative scrutiny took place on 7 October. I thank the committee for that. We will progress that legislation expeditiously and I expect integration of those services to be complete in 2027.
I recognise the real pain, the difficulty and the enormous trauma to so many people's lives as a consequence of a failure to get the correct surgery or to have the appropriate wraparound care for their children. It is truly enormous and I recognise that on behalf of the Government. Our effort to set up a commission to acknowledge and investigate the systems that enabled and led to that is one that is truly genuine. We genuinely wish to deliver something that can be the most inclusive, for those who wish to be public or private, and to draft terms of reference in a way that enables the best flexibility and inclusivity according to Mr. Farrell's report.