Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I very much welcome the opportunity to speak in Seanad Éireann today about not just scoliosis services, which are the focus of the Bill, but more broadly around paediatric spinal services, including scoliosis, spina bifida and other conditions as mentioned by Senator McDowell. I thank the Senators for tabling the Bill. As has been said, the Government and I are not opposing the Bill.

Our goal is for everyone in Ireland to have access to the care they need when they need it. That includes complex spinal surgery, equipment in people's homes and primary care services in the community. Waiting lists for children's spinal services are simply unacceptably long. Children are waiting too long in too many cases for access to spinal surgery, assessment and diagnostics, including, for example, MRI under general anaesthetic. Children are waiting too long in too many cases for appropriate community-based, home-based and primary care-based supports before they go in for operations, in between operations and, indeed, post surgery.

We are taking short-term and long-term actions to do two things. We have to eradicate the current waiting list and we have to make sure that at the same time we are increasing the permanent capacity in the State to make sure these waiting lists do not come about again. A very serious body of work has been done and there is a very serious programme of work under way to both of those ends.

We have invested record amounts of money into children's spinal services. A record number of healthcare professionals have been hired across CHI and a record number of spinal surgeries are taking place, which is important, but it is still quite a long way short of what is needed. The same is true of the community-based and non-surgical supports. In the main, the Bill focuses on surgical care but representatives of the advocacy groups have raised with me the fact that community-based supports and non-surgical supports need to be improved as well.

In 2022, as soon as we were on the other side of the main waves of Covid I asked Children's Health Ireland for a comprehensive plan that would eradicate these waiting lists. CHI came back to me with a €19 million plan. The funding was mainly for spinal services, although it was to be used for some other things as well. I went to Children's Health Ireland and it assured me that by the end of 2022 that no child would be waiting longer than four months. On that basis, I authorised the €19 million in funding. As we are aware, that investment and programme of work did not result in the eradication of the over four month waiting list by the end of the year. That was deeply frustrating and disappointing to me, but my disappointment is largely irrelevant. What matters is the disappointment and the impact on the children and their families.

The investment has, nonetheless, made some important differences. It is not that it has not had any effect; it has. The funding just has not had the scale of effect that it was very much meant to have. A lot more healthcare professionals have been hired in Temple Street, Crumlin and Cappagh. In fact, more than 200 healthcare professionals have been hired with this money. That includes more nurses, consultant doctors, anaesthetists and radiographers. The investment funded a fifth theatre in Temple Street, which was opened last year.It also funded a second MRI facility at Crumlin Hospital. Previously, it only had one MRI facility; it now has two. The investment has funded other activity as well, including at the National Orthopaedic Hospital Cappagh.

The agreed target of no child waiting more than four months was not met. However, there has been an important increase in activity. The number of spinal procedures last year and the year before that was well in excess of the 2019, pre-Covid-19 figure. That obviously matters. It also matters that the waiting list fell modestly last year. There is a waiting list of the total number of children waiting. The one we focus on most is the number of children waiting more than four months. It is worth saying that surgeons do not believe that this is the correct waiting list. They say that for some children, waiting four months is too long. For others, they say it is actually clinically appropriate for them to be scheduled for a longer period. It is worth saying that while surgeons accept the four-month waiting list, their view of the world is that it is more complex than that and that what we should be striving for is to have every child seen in the appropriate length of time. Nonetheless, greater than four months is a useful mechanism for mobilising the clinical resources of the State.

The waiting list is being validated. The new team in CHI is making sure it is in line with National Treatment Purchase Fund monthly reporting protocols. I am not going to provide figures this evening because when the figures are finalised, and they are pretty much finalised, it is important the advocacy groups are walked through the changes first. That will be done through the task force. I can tell the House that the preliminary figures I have seen are encouraging. They show a really important fall in the number of children waiting in excess of four months from 2022 into 2023 and now up to half way through 2024. It is my absolute intention, and Mr. David Moore's intention, along with that of the entire team in CHI, for that number to continue to fall this year. I want to pay tribute to those working in the services who are delivering these important reductions on behalf of these children.

Far more is required, however. On the basis of engagements I had with advocacy groups, I asked the HSE's internal audit function to review the allocation of the €19 million. As already stated, I wanted that report back before now. It is still being compiled, but I will have it shortly. It is clear, from detailed discussions I had with the HSE and CHI, that the majority of the funding intended for spinal services was allocated far more broadly across CHI than for spinal services. While I have no doubt the allocation of that money into other services has been hugely consequential and important for the children involved, the majority of that money was for spinal services. This matter was raised with me by the advocacy groups. I carried out an audit and I have engaged at length, as has been pointed out, with the board of CHI on this matter. I am not satisfied that the €19 million was allocated according to Government priority. While I have no doubt it has all benefited children, I am aware that the 206 whole-time equivalents who have been hired are not all working - and are not all close to working - in spinal services.

Despite the undertaking of a record number of spinal procedures during the past two years, the expected reductions in the waiting list have not happened. We would have expected, given the very significant increase in the number of surgeries being performed, that the waiting lists, while they have fallen, would have fallen by far more. The rationale for this is that there has been a big increase in the number of children being referred to the lists. To give colleagues a sense of this, in comparison with 2018, there was a 42% increase in referrals to the list last year. The number of surgeries has increased significantly. If the number of referrals had broadly stayed the same, the waiting list would be far lower than it is. There has been an enormous increase of 42% in referrals. To that end, we have to accommodate and work to that.

I have directed my Department, the HSE and CHI to progress several additional measures to ensure all of these children get the care they need when they need it. I am chairing monthly meetings involving my Department, CHI, the interim chief executive of CHI and the head of the spinal surgery unit to ensure that everything that can be done is being done. There is an ambitious programme of work, which covers Temple Street Hospital, Crumlin Hospital, Cappagh hospital, Blackrock Health, international outsourcing options, ring-fencing of beds, ring-fencing of theatres, ring-fencing of MRI capacity including under general anaesthetic, as well as seeking non-spinal orthopaedic surgeons to come in to free the relatively small number of surgeons who do the complex paediatric spinal work in order that they can dedicate more of their time to exactly that.

What I have already undertaken, as Senator McDowell outlined, is very similar to what is being called for in the Bill. When 2022 ended, CHI had clearly not met the targets it signed up to. In 2023, I met privately with the spinal surgeons - with no one else in the room - to find out what they needed. They said the best places in the world have dedicated spinal services. They referenced Stockholm and some services in the US and other places. There are not many of them globally. I said to them that we in Ireland must aspire to have one of the best children’s spinal services anywhere in the world. They said, if that is the ambition, it has to be a dedicated service. What they meant by that is dedicated theatres with dedicated theatre staff; dedicated anaesthetists; dedicated beds and wards; dedicated nursing and health and social care staff on those wards who specialise in paediatric spinal care; and dedicated post-acute teams so that when these children go back to their homes, they can be cared for by specialists. Essentially, that is one of the core things being called for in this Bill.

I met with the surgeons. We worked together. I asked them to design what a world-class, dedicated spinal service would look like. We want that to exist when they move into the new children’s hospital but, critically, we are not waiting for that. We need to put the service in place now in order that when we move into the new hospital, it will just be a case of moving the resources into a more modern service. This is what the task force is working on, and that is at the core of the meeting I chair every month. That is really what we are doing. We are asking questions such as whether services are being ring-fenced; whether the surgeons we have are being fully supported; whether they are getting as much of their time as possible to do children’s spinal surgery; whether we the ICU and the ward beds; whether we have the MRI under general anaesthetic available; whether we have the theatre available; whether we have the specialist nurses in theatre available; and, critically, whether we have the resources available so these children can go home as quickly as is clinically appropriate to get the supports they need at home. That is what we are really doing.

This is not something we are hoping to do in the future; it is very much live now. We have a hugely experienced consultant, Mr. David Moore, who has agreed to be the clinical lead on this. Mr. Moore and I are working together and speaking very regularly about what is needed. He has hired a specialist spinal team. That team is validating the lists, approving communications with the children and the children’s families and looking at ring-fencing resources. The interim chief executive of CHI is working night and day on this. She and I speak regularly. She is working very closely with the surgeons and staff in Crumlin and Temple Street hospitals to make sure this spinal service goes from strength to strength. The clinical lead is in place. The spinal management team he needs is in place. We are expanding the services they need.

I recently allocated additional funding to Mr. Moore to allow him to hire the extra staff he said he needed. We have allocated additional funding to facilitate Saturday blitz clinics in order that as many outpatients as possible can be seen.I funded additional capacity as well. There are a number of children waiting for MRIs under general anaesthetic, which is quite a specialist procedure, so I have allocated extra funding for that. There is ongoing work in terms of outsourcing options and some very positive leads have been identified. Mr. Moore and I are working very closely on those. These are not partnerships I would hope we would need long into the future. We need to put partnerships in place with some of these hospitals abroad in order that we have the capacity to ensure the children who are waiting now can get all of the care they need. I want to share with the Seanad that as well as funding the surgery and clinical care for the child abroad, I have instructed my Department to make sure there is a proper end-to-end package so that family members can go over and will be accommodated abroad for whatever period of time is right for the child. Critically, the way we are doing it now is in collaboration with the spinal team in Children's Health Ireland in order that when children come back from an operation there has been a lot of communication between our own surgeons and their surgeons because inevitably these children may need follow-up care. Rods need to be lengthened and adjusted and there are other things as well.

The delivery of a transitional adolescent service is under way. This is something the advocacy groups raised with us and said we are not good at, which is the transition from the paediatric services to adult services. That is being taken very seriously.

As Senator McDowell stated, we have a very competent and dedicated chair for the new task force. He has met with many of the advocacy groups. He invited them all to meet him. There are four advocacy groups involved now with the task force. There are two that have not got involved and I fully respect their position on that. The task force matters. The task force is where we are listening very carefully to the advocacy groups. It is where we are showing the progress that is being made and it is the group I am relying on to tell me that certain things are working for families but other things are not working. It is through engagement with the advocacy groups that I met the spinal surgeons and the dedicated service is being set up. It is through engagement with advocacy groups that I have asked for the audit of the €19 million. It was they who raised the fact they did not believe the €19 million was being allocated as was intended. The task force has met twice and will have its third meeting shortly. The feedback I am getting from those who are involved in it is that they find it useful but, critically, it is not a talking shop. It is there to make sure they are at the centre of saying what is needed on behalf of these children and families, and we are being very responsive to that. As colleagues will be aware, there are multiple reviews under way.

These children have been failed by the State. There is no question about that. It should not be this way. The lists were falling before Covid. Covid fundamentally changed what happened and the lists went back up. The lists are falling this year and fell last year, but not by remotely as much as I want them to fall or by as much as was committed to. They are falling. We have a new approach in place now. We have a hugely experienced clinical lead who now has a team around him. He has hired in additional people. We have Cappagh, Crumlin, Temple Street and Blackrock hospitals involved and international hospitals working together to make sure every one of these children gets the care they need when they need it. There is no other individual clinical area where I have had to intervene to this level. There is no other area where I am chairing monthly meetings. I am doing it broadly on waiting lists and emergency departments but there is no other individual patient area where I have taken an active project management role like this. All I would say is that I am very wary of over-promising to these children and families. All I can tell colleagues is that everything I, we and the surgeons can think of is being done to finally provide Ireland with a dedicated spinal service that provides the best quality care, early interventions and timely access for these children. That is what we are building. The initial response has been very positive and the number of children waiting more than four months is now falling at a rate that is more encouraging. I look forward to soon being able to share the numbers publicly and with Oireachtas colleagues.