Deputy Mary Lou McDonald- speech from 18 Sep 2024

Go Maagath, Cian Comhairle. Teachta, your treatment of children with scotiosis and spina bifida waiting for surgery is disgraceful. These children wait in agony for operations that can save and change their lives. And the longer they wait, the worse their condition gets. A race against the clock, a race against the child becoming inoperable and the prospect of permanent paralysis. And there are too many children in this awful situation. But today, I want to speak to you about one of them. Harvey Chirat has scoliosis and spina bifida. He's eight years old. He was born in 2016, the same year you were appointed Minister for Health, Taoiseach. In 2017, when Harvey was just one years old, his parents were told that his ribs were crushing his lungs. In that same year, as Minister, you promised that no child with scoliosis would wait longer than four months for their operation. But you broke that promise. And children waited and waited. And Harvey has waited and waited. And his condition has become life-threatening. Two years ago, the curvature of his spine was 65 degrees. Today, it is 110 degrees. It's twisting his rib cage against his heart and lungs, making it almost impossible for him to breathe. Between October and Christmas of last year, Harvey was rushed to hospital five times, twice by ambulance, on one occasion on Christmas Day. This child desperately needs his operation. And yet his parents recently find out that he was silently removed from the waiting list. Taoiseach, Stephen, that's Harvey's dad, has told me that they've been pushed to breaking point. That it's utterly debilitating for them as a family to see Harvey treated this way. They feel powerless to help him. It's completely changed their outlook on life. His mother, Gillian, said the weight and lack of treatment is killing her child. Gillian has sent you numerous emails, Taoiseach, pleading for assistance to no avail. But late last night, on the eve of the return of the adult, she finally got her reply. An email in which you make no commitment to end the agony of their child. And, of course, it wasn't your only late-night email, Taoiseach. Last May, you had promised to meet the parents of children with scoliosis and spina bifida. You still haven't met them. Late last night, they too received an email inviting them to meet you in October. This means they have waited almost six months to see you. Taoiseach, each day these children spend waiting is a day too long, never mind six months. I'm sure Gillian and Stephen would have no problem telling you how much worse Harvey has gotten since you made that promise to meet last May. These children need their operations. All you've offered is review after review after review with no results or improvements. Parents are stonewalled again and again, and it's simply not good enough. These children wait and wait because of government failures, and it is your job to fix it. As Taoiseach, the book stops with you. Today, I would like you to tell Harvey's parents and the parents of all of the other children when they will finally get their operations. Thank you, Deputy MacDonald. Taoiseach, please. Thanks very much, Kean Corla. I want to thank Deputy MacDonald for raising this important issue. May I say at the outset of my answer, Kean Corla, as you've said to us before in this House, I'm very conscious of discussing clinical details or indeed those of us discussing them that are not clinicians. I say that in a general sense, but I say it in an important sense. Deputy MacDonald asks me to provide operations when, of course, the decision to operate or not will always be a clinical matter. I'm sure that's a view she'd share. Politicians don't order operations. Clinicians decide when it's safe to operate. I say that to be helpful and to be respectful to the role of a clinician and indeed to the situation of patients as well. But let me say this, I'm very aware of Harvey's case and I have been in direct contact with the Chief Executive Officer of the HSE in relation to the matter and indeed with my colleague, the Minister for Health. I hope that a further appointment can be made soon to clinically discuss the next steps in Harvey's care. I believe that to be important. And yes, Harvey's mum wrote to me. Yes, when we received the correspondence, my office immediately looked into the case. And yes, I responded with the information provided to me by the HSE. But I'm absolutely certain that what's vital here is a clinical consultation with the family. Yes, my office has been in contact with advocacy groups and I do expect to meet them shortly. And at that meeting it won't just be a meeting with me. It will be a meeting with the new clinical lead for spinal surgery, a meeting with the Minister for Health and a meeting with the head of the HSE. I very much regret that children can experience long waiting times for treatment. I'm conscious that the burden this places on them and their families and I'm very conscious as a parent how any of us would do anything and go to the ends of the earth if our child needed any sort of treatment or care. Yes, when I was Minister for Health I met with families on many occasions with children awaiting scoliosis procedures. I remember them. I remember their names, I remember their faces and I understand some of what they are going through. But none of us can fully imagine that anxiety, that pain and that worry. This is an ongoing issue. It is affecting young children and their families and we must do everything we can to help them. I want to assure you that this Government will and is doing everything we can to help them. I have had a very good meeting with the Minister for Health on this issue and with the Chief Executive of the HSE. I have met with the new clinical lead of the dedicated spinal unit Mr David Moore and their teams and I know that absolutely everything that possibly can be done to help is being done. Indeed, many of the issues you have raised in this House, I will come to in a moment, have specifically been addressed since you previously raised them. The Minister for Health is chairing monthly meetings between the HSE and Children's Health Ireland aimed at improving waiting lists. A paediatric spinal task force has been established with an independent chair, Mark Connachton Senior Counsel. This task force consists of all stakeholders including patient representatives and clinicians. We are committing significant additional investment to help improve services as well. It is not just talk and it is not just reviews because here is the numbers. We have already seen a very significant increase in the number of procedures carried out in 2022 and in 2023. So far this year over 300 spinal procedures have taken place and behind each of those numbers is a child who has gotten an operation and been successfully treated in the Irish Health Service. We do have a dedicated paediatric spinal surgery management unit established by Children's Health Ireland. That is working to drive continuous improvements and a further funding of £1.34 million was allocated following a request from the new clinical need. This includes additional staff, a Saturday outpatient clinic, capacity for MRI scans under general anaesthetic to address waiting lists as well. We have also seen a number of reforms underway to further increase capacity for spinal surgeries, extending the operating theatre. A ring fence theatre in Crumlin is now providing additional capacity as well. You have previously raised the issue as have advocacy groups around national outsourcing and that is why we are now using capacity in CAPA, the Black Rock Clinic and the National Treatment Purchase Fund. We also have international arrangements now in place. We will do everything we possibly can to assist and make progress in this area. Of that there is no doubt. It is not a resourcing issue, it is not a commitment issue. There are clinical issues though and the views of clinicians are always important in terms of care pathways too. The difficulty is that you have not done everything that you can to resolve this situation. Harvey's parents Stephen and Gillian are in the public gallery, just there. They shouldn't be here. The very fact that parents of children with scoliosis and spina bifida have to come to the Dáil in this way is a testament to failure in and of itself. Because their child is running out of time. That is the reality and it is not your child Taoiseach, it is not mine either. It is Gillian and Stephen's child and he is eight years old and he is deteriorating rapidly. And he needs and deserves the operation and care that he is entitled to. And it strikes me, and I am alarmed by it frankly, that you are going through the motions here, reciting the thing that you recite and have recited time and again when we have raised the issue of these very complex cases that can no longer be left on the never-never because time is running out. So I would like you Taoiseach now to make a commitment, not so much to me, but to the parents of Harvey, to Gillian and Stephen, they are a young couple, they are in the public gallery. I want you to tell them that their child will get the operation that he needs. I want you to tell him that the weight, that the stonewalling, that the prevarication, that the spin and sound bites will end and that the action will now be taken. Thank you very much. You are better than that, or at least I thought you were, because the reality of the situation is you are asking me, as a politician, to give a commitment to a child to have an operation, regardless of whether a clinician believes that operation to be the best care pathway or not. That is what you are asking me to do. That is what you are asking me to do. No, no, Deputy, unless over the summer you became a surgeon, you are asking me to recommend clinical care pathways for an extraordinarily sick child. I want that child, Harvey, to get the best clinical care possible. I want Harvey to get all of the treatment possible. I want every child in Ireland, so does the Minister for Health, to get all of the care possible. I believe the best way to progress these matters is through clinical consultation. What I can absolutely tell Harvey's parents and tell all parents is whatever clinical care is recommended will be provided. But it is the clinical care that is recommended, and I believe that to happen. When I corresponded last night with the family, that is the point I made. We are very happy for my team to talk to the family, very happy to help in every way we can. But ultimately a clinical decision will have to be made here. And for you to suggest that there is some clinical lever that I can pull that I just couldn't be bothered pulling, is insulting to parents of sick children. You are better than that and sick children deserve better than that. Thank you very much. Thank you very much.