Tom Clonan (Independent) | Oireachtas source

I thank the Minister for coming to the House this evening. I echo my colleague's congratulations. Déanaim comhghairdeas léi. I am delighted she has been appointed as Minister because, as others have said, she has the tenacity and capacity to deal with the many challenges that confront us in health. I thank Senator McDowell for drafting the Bill, bringing it forward and having it reinstated on the Order Paper.

I want to specifically address section 1, relating to the establishment of a scoliosis treatment service "for the timely detection, assessment and remedial treatment of scoliosis for all children and adults". That is the key point.As a wealthy republic in the First World, can we actually treat disabled children within the therapeutic window? I am afraid to say that, as it stands, we cannot and we do not. We are failing to save children and adults in the Republic. It is not because we cannot do it, because we certainly have the financial wherewithal to do so. It is because we choose not to. As I have said before, if anyone here, heaven forbid, presents at an accident and emergency department with chest pain, notwithstanding all of the chaos in our emergency departments, they will be treated. If they need stents, they will get stents. If they need a bypass, they will get that. If they have cancer, notwithstanding all the delays and the chaos in our emergency departments, they will be seen by an oncologist, they will be treated by the team and they will get chemotherapy, radiotherapy and so on. We are seeing improved outcomes in that regard. If you are pregnant and you go to a maternity hospital, you will be seen, you will be scanned and in due course, depending on your choice, you will be brought to a delivery suite and your child will be delivered. If, however, you are a disabled child you will not be seen. A pregnant woman would not be given a handout or a link to YouTube and be told this is some advice on what to do when the baby comes, best of luck with it and she will be seen in five years' time. That is not what happens in any other branch of medicine, but when it comes to disabled children, they are denied treatment, simple as. We have children on those acute waiting lists who have become inoperable.

I have met the parents and families of those children. There are people watching this evening from OrthoKids Ireland and from the Scoliosis Advocacy Network. There are hundreds upon hundreds of Irish families who find themselves in this situation. As Senator Craughwell and other Senators have said, it is very difficult to get facts and figures and transparent information from Children's Health Ireland, CHI. For my best efforts, and the figures are disputed by the parents and the advocacy groups, at the moment more than 130 children in acute need of surgical intervention are on a waiting list and have no date for surgery or for an appointment for surgical review with a qualified spinal surgeon. This all speaks to the requirements that are set out in section 1. Every single one of those children on that waiting list is not getting the surgical interventions, even though they are in acute need of it. I just want to be clear that when they do get the surgical intervention, it is often too late. It is not happening within the therapeutic window. Treatment delayed is treatment denied.

I heard the word "misspent" used by the former Minister about the €19 million, that the money was misspent and that it was not spent on those purposes for which it was originally intended. Members have probably heard of the expression "a misspent youth". We have children on that waiting list whose youth and potential as human beings, as adults and as citizens is being misspent. It is being squandered away in a republic that has plenty of money. It is not just a national scandal. I will refer to this further. What is happening to our disabled children is an international medical scandal. It does not happen to able-bodied adults when they present to the accident and emergency department with chest pain or cancer. This is something that is exclusive to disabled children, which begs the question what kind of Republic is this. If we deny treatment to a group of citizens on the basis of their ethnicity, then we would be racist. If we denied it on the basis of their sexual identity or their sexual orientation, we would be a homophobic nation. We are denying disabled children treatment based on their additional needs.This is, by definition, an ableist republic. Unfortunately, the reason we, the grown-ups in the room, are introducing this legislation on Committee Stage today is to force or compel the State and its agencies to do what is right.

Let me tell the House what delayed and denied treatment looks like. I say this as a carer and parent to a young man who had spinal surgery for scoliosis in 2018. Like all the children on this list, his surgery was delayed. I say this as a public representative. The only reason I am here, as the Minister knows, is because of our family's experience of disability and unmet need across all aspects of disability in this country. I am also mandated by the UN Convention on the Rights of Persons with Disabilities, to which we have been fully signed up since 31 October, to speak to the lived experience of disability, specifically in relation to scoliosis and the provision of a service as set out in section 1.

My son should have had scoliosis surgery when he was about 12 years old but he did not. It was delayed for four years, during the teenage years when little organs are developing and all of these changes happen. From the ages of 12 to 16, we watched our son slowly twist and turn in his wheelchair. In Ireland, the spines of disabled children are allowed to go to a point that is not accepted in any other country in the European Union or the developed world. We allow our children and their spines to deteriorate to such a point that in my son's case, it compromised his breathing. His lungs were compressed as a result of the twist in his chest cavity to the extent that he only had about 30% lung function. That impacted on his voice and ability to speak.

The other joy of being disabled in Ireland is that my son never got speech therapy or physiotherapy. No, not in Ireland, where you do not get meaningful speech therapy, occupational therapy or physiotherapy. As a family, like the hundreds of children and families who are on that waiting list, we have to watch our son deteriorate for lack of a service, as set out in section 1 of the Bill. This is not the Minister's fault. This is a situation she has inherited but it behoves me to point out the stark reality of this and the lack of a service, as set out in section 1.

As I said, my son's lung function was down to about 30% but his heart was also compressed. We went to a paediatric cardiologist in Temple Street hospital who did a scan prior to surgery. Initially, she could not find his heart because it was in a part of the chest cavity where it should not normally be. This was so unusual she asked us if we could record it because it was a teaching point. She got the registrars to come in and have a look. We all watched my son's little heart beating in a part of the chest where you would not normally find a heart. This meant that for surgery, he became a respiratory risk. We had a consultation with the anaesthetist who told us she was not sure if it would be safe for him to have a full general anaesthetic and that, therefore, he might be inoperable.

My son had the surgery in 2018. We did it during transition year when his friends were off doing their activities. He went into Temple Street hospital. The surgery for spinal fusion involved a procedure of about 12 hours. His development was restricted because of the scoliotic curve to his spine. He is only a little fella. During the procedure, they had to use about 8 l of blood and blood products. Imagine that quantity or volume of blood. The surgery went on for about 12 hours and, luckily, they were able to correct the curvature, although not completely. They were able to alter it, put in the rods and do the spinal fusion. I went up to intensive care at around midnight and the reason my son was so delayed getting out of the operating theatre was that the anaesthetist manually extubated him because she felt that if he had gone into the intensive care unit intubated, as he was, he would not have made it.She waited with him, manually did the compressions and then, manually, very carefully and slowly over a period of hours, extubated him. Let me tell you, the problems in our health services are not the making of clinicians, consultants, registrars or nurses. They firmly reside within the health services' executive management – on their boards, in their executive leadership teams and with their managers. Clinicians in this country are doing their utmost under very difficult conditions.

Without being too melodramatic or using too much hyperbole, for my family to have been told my son might not make it was unnecessary. It was for want of a service as set out in section 1. My son is now in his final year in college. His speech is poor and we as a family are left wondering whether that is a consequence of his not having had the surgery within the therapeutic window when developing. He is a small little fellow. I look at him sometimes and wonder whether, if we lived in a jurisdiction with proper services, the outlook would be different. His not having been in such a jurisdiction has certainly had life-limiting implications for him.

Let me put that into its context for the Minister from our experience, the lived experience of disability. Just before Christmas, I hosted in Leinster House a number of Irish and international paediatric spinal surgeons who were in Ireland for a conference. The American spinal surgeons, from a centre of excellence in Phoenix, Arizona, told me the situation for children on the Irish waiting list is unheard of in other jurisdictions. The spinal surgeons from Arizona and Texas told me that, as part of their corporate social responsibility or giving back, they sometimes take on charity cases, typically involving people who have come across the border from Mexico. Very often, part of the migration pattern involves people seeking medical treatment in the United States. These are children and young adults who are absolutely in extremis. The surgeons take on these cases on a pro bonobasis. They are all teaching cases because the patients' conditions have become so extreme that they are not seen in the normal medical environment in the United States. These are cases that would not normally be seen in the UK, Germany or Canada. The surgeons told me that the cases matched the profile of those of the disabled children on the Irish waiting list. One of them remarked to me that if you were to fly the 130 children on the spinal surgery waiting list by Airbus or Boeing to Canada, the UK or the US, where there is a centre of excellence, it would be declared an international medical incident and put on the risk register. People would ask what kind of country allows its children to deteriorate to this point, where they have long-lasting, life-limiting and life-altering outcomes – suboptimal outcomes. I want to be really clear about that.

The spinal surgeons were also very confused. I do not know how the Minister is being briefed but I have listened to representatives of CHI and the HSE at meetings of the various committees. I hope those committees will be re-established as soon as possible. The Minister needs to be really careful as to where she gets her information from. All surgeons require higher specialist training. They acquire surgeon membership and then specialise by doing a surgical fellowship. If you want to be a proper spinal surgeon, you have to do the higher specialist training in spinal surgery. If you want to be a urological paediatric surgeon, you have to do the higher specialist training. This is something the Minister needs to look into if we are to have a proper service.Are the surgeons being recruited and appointed by CHI actually fully qualified, with higher specialist training in spinal surgery and the necessary specialty training, usually acquired abroad? I do not think so. The reason I say this is because, notwithstanding what Senator Craughwell had to say, at present CHI is unable to provide annual spinal reviews with qualified spinal surgeons. These are for children who have had surgery, are awaiting surgery or are post surgery. They cannot provide them because they do not have the surgeons who are qualified to do so. This raises the eyebrows of the international community. We are outliers in this regard. Again, this is not a situation of the Minister's making, and it is not her fault, but it is something we really need to have a look at.

In every other medical specialty, higher specialist training is considered the norm in international modern medicine. The HSE is appointing doctors to consultant posts who do not have higher specialist training. This is a scandal. It is a danger to the Irish public. If we got on a flight to London and the pilot said they had not flown one of these Airbuses before but had done 12 hours in a Cessna and would be able to figure it out, we would not be happy. This is what is happening in our medical system with recruitment and retention. Again, this is not the fault of clinicians. The flight of talent from this country is not the fault of clinicians. It is not a lifestyle choice. It is a consequence of the manner in which the HSE and CHI are managed. People who speak out about these risks are subject to retaliation, reprisal and isolation.

I want to make a few points on section 1 of the Bill. We are coming to a point when Temple Street and Crumlin hospitals will migrate to the new national children's hospital. This is a point of great risk. Whoever will manage this will have to be brought in and asked what the risk management and assessment plan is for this. I believe children will suffer in this migration. The scandal of the national children's hospital is not in the €2.2 billion costs. It is not in the euro, the planning, the design, the bricks, the mortar, the windows or the potted plants around the place. The scandal is what is happening to the children on the waiting lists and to those families who are watching their children deteriorate. This is where the scandal lies.

Senator Craughwell referenced the precedent of the manner in which cystic fibrosis has been ring-fenced and protected as a service. This is good precedent for what we are seeking to achieve with the legislation for scoliosis. The same is needed for urology and for all disability services.

The Minister and we as a Legislature can delegate authority to CHI and the HSE. We can delegate authority to them to carry out the functions of the State but we cannot delegate responsibility. We are responsible for what is happening and what has happened to these children. I really hope that what is set out in section 1 of the Bill can be achieved. What happened to my child in 2018 is still happening today, seven years later. I am absolutely certain from what I know of the former Minister for Health, Deputy Harris, as a man and a citizen that he meant in the utmost good faith what he said eight years ago. He said this would not continue. It is continuing and we need to act. This is not just a national scandal; it is an international medical scandal. We have to stop being outliers.

With regard to all of the other legislation I hope to introduce here during the next four to five years, or however long the Administration lasts, we have to move away from a charitable grace and favour ableist approach to disability. We have to move to a fundamental human rights approach. I commend Senator McDowell on drafting this legislation because this is what it does. It confers rights upon disabled children.That is the only way we are going to be able to compel the HSE, CHI and all the other State agencies to actually do what it says on the tin. I thank the Minister for her patience and forbearance in listening to me, but it is just really important to set out the context.