Scoliosis treatment delays
Mary Lou McDonald raised the severe impact of delayed scoliosis surgery on children, saying some become inoperable or wheelchair-bound. The Taoiseach acknowledged the issue, defended Government investment and procedures, and the exchange became a heated row over whether action matched concern.
Scoliosis is a debilitating and painful condition for a person's spine twists and curves. It can cause the ribcage to press against the lungs and internal organs making it increasingly difficult to breathe. It is especially tough on young children. Where children do not get the surgeries they need on time, the consequences are devastating. The longer they wait, the more complex the procedures they will eventually need and without timely care, children end up in wheelchairs. Some children wait so long that they become inoperable and they have run out of time. Too many children and their parents face this agonising wait. The suffering and the mental distress is just unimaginable. In 2017 the Taoiseach promised that by the end of that year no child would wait longer than four months for scoliosis surgery. That was seven years ago and that promise has been broken again and again. To be clear, the four-month target was agreed between the Taoiseach as the then Minister for Health and the HSE based on international best practice. That promise made by the Taoiseach then was broken. He failed to build the capacity needed here and in 2019 he ended the scheme through which children could travel abroad to have their operations faster.
Last night, my colleague an Teachta Cullinane and I again met parents of children of scoliosis and spina bifida. They are very angry, hurt and they feel completely betrayed. They asked me to relay their words to the Taoiseach directly. They said they wanted to tell Simon Harris that Government has actively consistently and comprehensively failed their children. They said to tell him that they as parents did all of the right things, everything they could do, and yet their children are subjected to serious and ongoing harm.
The Taoiseach met these families back in 2016 and many of the same children are still in the system today experiencing delays to the treatments they need so badly. Moreover, parents live every day with the fear of their child becoming inoperable. They say that many of the parents are kept in the dark by Children's Health Ireland, CHI, and they see hard-working consultants under huge pressure and without the resources they need. Parents suspect and fear that many more children may have run out of time and have become inoperable. They want the Government to fund a second opinion for their children, independent of CHI. The Taoiseach can see that their trust has been shattered by all of the empty promises. Níl aon ghá le gealltanais fholmha do pháistí le scoliosis agus spina bifida. Is é an rud atá uathu ná nósanna imeachta leighis anois.
Yesterday, the Taoiseach restated a promise to children with scoliosis and spina bifida but these children do not need any more promises. They need the operations. The Taoiseach stated that every resource possible will be provided "to make sure no child finds themselves waiting in pain and agony". These children, however, are waiting in pain and agony today and as I heard this promise from the Taoiseach seven long years ago, I have three questions for the Taoiseach. First, is the Taoiseach promising once again that children will not wait more than four months for spinal surgeries? Second, is the Taoiseach reinstating the scheme for children who can travel abroad to get their operations? Third, will Government fund that second independent opinion, independent from CHI, that parents are now demanding for their children?
Comment on this
Gabhaim buíochas le Deputy McDonald, and I thank her for raising what is an extraordinarily important, stressful, and worrying issue for many families in Ireland. As the Deputy has rightly said, I have met many of the families, there are many families that I know and many children whose faces and names I still remember. Nobody, not Deputy McDonald or me, nobody on this side of the House or on that side of the House wants to see any child waiting in pain. On that we can all absolutely agree.
The Deputy is absolutely correct in stating that when I was Minister for Health, I did place a real focus on this issue. It was said to me by the then director general of the HSE that the executive would put a plan in place to ensure that no child waited longer than four months.
That plan originated, as the Deputy correctly says, from clinical advice, and I believe similar clinical advice exists within the NHS. That was the clinical advice then and it is the clinical advice now. Of course, there can from time to time be complexities, as all of us know, as regards individual cases and multiple medical conditions and how they interact. Having said that, that is where the four months came from. What I definitely know is that by placing that focus on scoliosis, we saw a very significant reduction in the number of children waiting over four months. If we are to start Leaders' Questions by engaging in good faith, I think the Deputy will acknowledge when she looks at the figures that after I gave that commitment, the progress that was made in a short period in very significantly reducing the number of children waiting over four months was real and was felt and there were weekly reports produced. The Covid pandemic happened and waiting times worsened. Waiting times worsened for all procedures, including scoliosis.
My colleague the Minister for Health has been putting a real focus on this issue, continuing that work and trying to re-engage and refresh on it, including with new clinical leadership. I very much welcome the fact that he has appointed Mr. David Moore, a consultant surgeon in this area, to be a clinical lead, which all of us should welcome because I think that clinical expertise will make a real difference.
We have seen a very significant increase again in the number of spinal procedures now carried out. For example, in 2022, 509 spinal procedures were carried out. This compares with 380 in 2019. It represents a 34% increase in the number of procedures and a 22% increase for the year 2023. We now have the paediatric spinal surgery management unit in place, and so far this year, in 2024, we have seen over 120 spinal procedures take place. The Government remains absolutely committed, as I know everyone in this House does, to doing everything we humanly can to assist children with wait times and to assist their parents, who go through such a stressful and worrying time as well.
The Deputy has asked me three questions, so let me endeavour to answer them. As I have said as regards the first one, the four months remains the clinical advice and the clinical target and, therefore, that is what the Government here and governments around the world must work towards.
Second, my understanding is that Mr. Moore, the consultant surgeon, is now looking at the issue the Deputy has raised as regards treatment abroad options. It is important that that is considered, and I welcome the fact that the Deputy, on behalf of parents, I think, makes that suggestion here today.
Third, I will engage with the Minister and the HSE on the idea of an independent opinion because it sounds like a suggestion made in good faith.
The Deputy should know this. This is an issue which will continue to receive extraordinary levels of care, investment and attention from the Government. I know also that the Minister for Health is convening a dedicated paediatric spinal task force with an independent chair. I know the idea of an independent chair was seen as essential by many of the advocacy groups. That independent chair is Mark Connaughton, who is a senior counsel, and the chair is now meeting with stakeholders and patient groups and finalising the terms of reference, which is another important step forward.
Comment on this
The Taoiseach says that nobody wants to see children in agony and pain, but that is exactly what we see. I spoke last night to one mother whose child is now no longer a child. They are now 19 and inoperable. Why are they inoperable? They are inoperable because they waited and waited and waited. The mother said directly that they followed all the right protocols and all the care paths - and for what? Words and rhetoric are of no value to them. The only good faith that matters on this subject is the good faith of the Government. That is the issue. The issue here is that we have 4,000 children awaiting their first consultation. That is the length of the list. We have 270 children on the surgery waiting list, 78 of whom have waited and waited far longer than four months. Here is perhaps the worst feature of all: the most complex and the most desperate of cases in many instances have the longest waits. These families - these children, these young adults, these parents - are now in a state of absolute panic.
I want a concrete commitment from the Taoiseach that he will not simply engage but deliver on the independent opinion and on the travel abroad.
More broadly than that-----
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-----the parents want to know that now he is Taoiseach, he will finally honour a promise he made many years ago.
Comment on this
I thank Deputy McDonald. First, I answered her three questions sequentially and clearly. I will continue to engage with her on the three answers I gave her. Second, it is a little dismissive to suggest words and rhetoric when 120 procedures this year is not rhetoric and massive levels of investment in theatres and hiring more nurses and doctors are not words; they are real actions. I know it suits the Deputy to suggest these are just words and rhetoric but they are real things we are doing to make a real difference. There is no monopoly on concern. Even in the past fortnight, the Minister for Health has received requests from Mr. Moore, the new clinical lead, in relation to further additional staff and posts and has provided the green light. I will engage with the Deputy in good faith on these exchanges but it is not words or rhetoric; it is real solid action which we are taking to address an extraordinarily difficult thing. She can shake her head if she wishes but that is what it is.
I hope that when Sinn Féin meets and engages with these families and positions itself as having all the solutions to all of the issues, it has the good grace to tell them that when it had an opportunity to put an alternative health budget to this House, it provided €500 million less to the health service than this Government provided.
Comment on this
We will fact-check that for the Taoiseach.