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Dáil
‹ Ceisteanna ó Cheannairí - Leaders' Questions

Paediatric scoliosis and spina bifida treatment

Summary

Deputy Richard O'Donoghue raised the distress of families seeking scoliosis and spina bifida treatment and said commitments had not been met. The Tánaiste said the issue was being prioritised, funding was not the problem, capacity had increased, and overseas treatment remained part of the response despite the Deputy’s challenge to the figures.

Yesterday I attended a presentation in the audiovisual room from the Scoliosis Advocacy Network and a spina bifida advocacy group. It was one of the most packed audiovisual room presentations in the five years I have been here. When their stories were told, there was not one dry eye in the room. There were parents with their children in wheelchairs. There were people there on crutches whose spines are twisted. They were given a commitment by the Taoiseach two years ago when he was the Minister for Health. He told them he would meet them. He told them that €9.1 million would be made available for them. That €9.1 million has gone into the overspending somewhere in the HSE and has never been seen since.

Some of these children have to leave the country to get operations to give them a quality of life. One person there yesterday is inoperable and cannot leave the country for any operation. One of them asked me what the definition of madness is and then said it is when the same thing is done over and over again when expecting a different result. This seems to come into play when the Government goes to the country and people vote for the same people all the time. They are told the same things all the time but make no change.

Where is the accountability in the Cabinet when somebody promises someone €9.1 million for quality of life and does not deliver? Where is the accountability from the Taoiseach? There are emails to prove he has been asked for the past 18 months to meet them and he has refused. He tells them various committees will meet them but he has not met them himself. They have the emails to prove this is happening while children are suffering. They want procedures to be put in place to provide for a quality of life. Why does the Cabinet stand by and allow this to happen when it spent €336,000 on a bike shed, €1.4 million on a security shed and €1.2 million on a cabin out the front for RTÉ to put its bits and pieces into? It cannot give €9.1 million to provide a quality of life to children who are suffering.

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I thank Deputy O'Donoghue for raising this issue, which is causing immense anxiety, stress and trauma-----

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-----for many families, particularly to the children who require surgery and treatment in a timely manner. This is being prioritised in the Government. It has been prioritised. Funding is not an issue from the Government's perspective. Additional staff have been recruited. As Deputy O'Donoghue knows, there have been issues in respect of some aspects of it over the past two years. There has been a significant increase in the number of paediatric spinal procedures carried out in 2022 and 2023. I will not go through all the figures because as far as I am concerned it is not enough until every child is enabled to have an operation when it is prescribed by the clinicians that this is the time the child needs the operation. That is when the child should get the operation.

This is why I have been a strong supporter of outsourcing if capacity does not exist in the national system. It has been increased, and this has to be said. It has been increased and funding has been provided and more operations and procedures are being done but, in my view, the waiting times are still too long for children. Where possible, we should facilitate children getting their surgery done in a timely manner. The HSE is engaging with Children's Health Ireland which is responsible for this, along with the National Orthopaedic Hospital Cappagh, the Blackrock Clinic and the National Treatment Purchase Fund, to co-ordinate national outsourcing opportunities for spinal and non-spinal orthopaedic work, to ensure maximum capacity for complex spinal surgeries in CHI.

An arrangement with Morgan Stanley children's hospital in New York has been finalised. Consultants from New York have travelled to Ireland to see patients at a clinic in Dublin. Following a clinic held in Dublin with surgeons from Great Ormond Street Hospital in London, a cohort of patients has been offered treatment abroad and this is in progress. An arrangement has also been finalised with Portland Hospital in the United Kingdom. Families will be supported in accessing these pathways if it is the right option for their children. This will include travel, flights, accommodation, transport and a subsistence rate for expenses.

Ideally we would want all children to be done in this country, but timely intervention is key for the child. This is my personal view. When I was Minister with responsibility for health in 2002 and 2003 we sent 100 children to Johns Hopkins Hospital in the United States because we were building new theatres in Crumlin. Our consultants here led that. It worked effectively at the time. In my view what should guide this are the needs of the child and timely interventions. I have discussed this with the Minister for Health. As we increase national capacity and eliminate the waiting times, when we can get good arrangements in Great Ormond Street Hospital and elsewhere, we should pursue them.

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I thank the Tánaiste. He mentioned CHI, the HSE and advocates. These are the same people who have been heading this since 2015 except with a new name. Nothing has changed. The same people from that system have a new name with new positions but they are the same people. The one thing the Tánaiste left out in his contribution when he mentioned anxiety for people was the main issue, which is the pain that children are going through unnecessarily. Some of these children cannot leave the country for these operations. They have to be looked at on a 12-monthly basis because of their growth as they get older. If the operations are not done within a timely period, it will create needless pain for these children.

If the issue is not funding or clinical, why is this not happening? Why were these people here again yesterday, after waiting for two years for the Taoiseach to get back to them while their children are in pain? This is the bottom line. We can say what we like but they would not be here if what the Tánaiste is saying was being done. They are at their wits' end watching their children and loved ones in pain every day. Not only are the children in pain, but their families and the people around them see them in pain. This is where the problem lies.

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It is about capacity. In 2019 approximately 380 procedures were done. Last year approximately 464 were done. A higher number were done in 2022 with 509 spinal procedures.

The hiring of more healthcare professionals has happened in Crumlin and Temple Street children's hospitals and at Cappagh. A fifth theatre in Temple Street was opened in October of last year. An additional magnetic MRI scanner was installed in October 2023. Some 24 beds were provided, which are now all operational. There has been further activity in paediatric theatre lists at Cappagh. More cases have come on and more children have come on the list and so on. As far as I am concerned, we have to do whatever it takes to get the operations done in a timely manner.

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How many of those children were operated on twice-----

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What I would say to the Deputy as well-----

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-----from the rods breaking in their backs?

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What I would say as well is that-----

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Double figures were given.

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Please, Deputy.

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-----children can be treated overseas. It is not ideal, I understand that, but there has been a long-standing relationship between our children's hospitals and hospitals like Great Ormond Street Hospital and hospitals in the United States. That they have collaboration is nothing new-----

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The figures the Tánaiste has given are inaccurate.

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Deputy, please.

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In a whole range of things-----

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The figures the Tánaiste has given are inaccurate because some of those operations have been done twice. The rods broke in those children's backs. They were operated on twice within two years, and they are also in those stats.

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Will the Deputy let the Tánaiste answer?

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As far as I am concerned, I want every child looked after, but we have to do it in the most effective way we can. The most effective way we can do it now is a combination of building up national capacity and also-----

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The Taoiseach needs to meet them.

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I thank the Tánaiste. The time is up. We are way over time.

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-----to have those children who have been waiting too long looked after in the number of hospitals that are identified in their area.

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That concludes Leaders' Questions. As I said, we are way over time.

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