Parents of children with scoliosis and spina bifida, who travelled “with great difficulty” to Leinster House this week, have said that the children – some who said they are in “unimaginable pain” – felt ignored and disgusted after “not one” government TD came to meet them.
And a campaigner says families feel they are “muzzled into silence like dogs”, because they found themselves muted during zoom ‘family forums’ organised by the state body overseeing clinical care for children – Children’s Health Ireland – and unable to expresse their concerns and views on the service.
This week’s protest was organised by the Spina Bifida & Hydrocephalus Paediatric Advocacy and the Scoliosis Advocacy Network who say
Speaking to Gript, one mother said that the older children were “well aware” that they were “being ignored” at the Dáil on Tuesday – and that they felt they were treated with contempt when Minister Stephen Donnelly left the chamber during the debate on the ongoing delay in providing complex surgeries to children with spina bifida and scoliosis.
The children, many of whom are wheelchair users, were in the viewing gallery during the debate. The Department of Health told Gript that the Minister had to leave the Dáil a few minutes early to return to meet with the HSE board.
The delays in treatment have left very sick children waiting for essential operations for years , and this means, in some cases, that children are living in severe pain, with their spines crushing their lungs and pressing against their heart.
One family’s story recently received widespread public attention when they shared that they believed their 8 year old son, Harvey, would die unless he underwent surgery.
Earlier this month, the Ombudsman for Children, Niall Muldoon, called on the government to “honour its commitment” it made seven years ago to reduce scoliosis surgery waiting times for children to no longer than four months.
Mr Muldoon said he was aware of the “extremely long waiting times being experienced by children who need orthopaedic surgery” and, he said, “the government must honour the promise that no child will be waiting longer than four months for their scoliosis surgery in Ireland”.
“This is a promise they made to these children and it has been repeatedly broken with devastating consequences,” the Children’s Ombudsman said.
Úna Keightley, who is a volunteer campaigner for families in need of complex spinal surgeries, and co-leader of Spina Bifida and Hydrocephalus Paediatric Advocacy group, said that both groups who organised the protest were upset and angry that not one person in government came to meet the children who the motion pertained to.
Of note this eve – not 1 person in government came to meet & speak with families who travelled from all over Ireland.
This is a really poor reflection on @FineGael & @fiannafailparty & @greenparty_ie
Shame on all. No want to listen & understand.@LeoVaradkar @MichealMartinTD pic.twitter.com/hrcYw8Seqe
— The Scoliosis Advocacy Network #BackUs (@scolionetwork) February 21, 2024
She told Gript: “The children are well aware they are being ignored, and to see them feel that level of disdain was dreadful. They felt the government TDs were such cowards, they wouldn’t even come and face them or listen to them.”
“A lot of the children are unwell and in pain,” she explained. “Some of them travelled long distances, and to make the trip was a huge effort given that pain and discomfort. The logistics of getting them there are a big challenge, it is not easy for these children. And then they were just ignored.”
She said that the government needed to face up to what was happening to children on their watch.
“In the past abuse and neglect was hidden, and people said they didn’t know it was happening – but this is happening in plain sight,” she said.
“Children are in pain and they are suffering, becoming more reliant on mobility aids than previously e.g. walkers & wheelchairs, because they are left waiting years for treatment. The government and Children’s Health Ireland (CHI) – they can’t shirk or pretend they don’t know, so they are turning away and ignoring them,” she said.
“People want to help: they offer to set up a Go Fund Me and they are very kind, but money isn’t the issue, the state has the money, it’s gross mismanagement,” she said, “and we also feel its happening because our children are not a priority.”
Ms Keightley said children with severe cases of scoliosis and spina bifida were often unable to travel abroad for treatment because of their conditions – and that private hospitals cannot cater for medically complex children with conditions such as Spina Bifida.
She said that the HSE doesn’t have enough Orthopaedic surgeons and said that shortage of operating theatre space was another big factor
“Crumlin Children’s Hospital and Temple St are waiting to transfer to the new Children’s Hospital, which is delayed over and over again, and that means they haven’t added extra operating theatre space, so they don’t hire surgeons to operate: its a vicious circle,” she said.
Ms Keightley added that the HSE needed to outsource the surgeries abroad for those fit to travel, and also bring in surgeons who could perform the complex surgeries for the children who couldn’t travel.
She said it was her opinion that CHI was “run like a business”, and that ensuring optimal care for the most complex children was important than metrics. “The number of children requiring complex surgeries has not gone down,” she said.
The Minister for Health told the Dáil on Tuesday that the number of children referred to spinal surgeries rose by 40% in 2023 compared to 2019. At the end of December 2023, 78 patients were waiting over four months, which he said was a 13 % reduction compared to the end of 2022.
In 2022, 509 spinal procedures were carried out, while 464 were completed in 2023. This compared to just 380 in 2019, the figures showed.
However, there has been an increase in the number of children waiting on scoliosis-related surgery since the controversy over waiting lists began in 2017, and campaigners say that they feel the most complex surgeries are not taking place.
Ms Keightley said that since 2022 no spina bifida surgeries were carried out in Temple St – with just one in Crumlin in 2023: adding that surgeries had ceased following a review of the work of one surgeon. No recommencement date for spinal surgeries for children living with Spina Bifida has been given by CHI or the Minister.
In the Dáil on Tuesday, the Sinn Féin motion being debated noted that then Minister for Health Simon Harris promised in 2017 that the waiting lists were “indefensible” and that no child would wait for more than four months for scoliosis procedure by the end of that year.
Ms Keightley said that the most recent figures show there were now 327 children waiting on scoliosis-related surgery, a figure that was even higher that the 312 on the list at the time Mr Harris’s made his promise.
A gentle reminder – “by the end of this year (2017) no child will wait longer for a scoliosis procedure than 4 months”. Aug 2018 and children continue to languish on lists. Do you still feel ashamed @SimonHarrisTD ? pic.twitter.com/PutIE9qCS9
— The Scoliosis Advocacy Network #BackUs (@scolionetwork) August 7, 2018
“Parents fear their child will become inoperable because of delays,” she said. “If this happens it hampers our children’s ability to live their best and most independent lives.”
One mother, Lisa Brett, told RTÉ News on Tuesday that the delays in treatment was “putting children in wheelchairs that were never wheelchair users” – and her son Eddie said that there were “children in pain who don’t deserve to be in pain”.
“I just want it to stop,” he said. Another teenager with scoliosis, TJ Coughlan said that he had been left in “unimaginable pain over the last number of years.”
Parents protest over scoliosis surgery delays | Read more: https://t.co/93ekgEzp3i pic.twitter.com/mjqqhAKkjA
— RTÉ News (@rtenews) February 20, 2024
Ms Keightley says she feels that neither the CHI nor the government is listening – that “they talk but there’s no action” – and that these children need action urgently.
“We were muted whilst staff had audio on and can speak to their heart’s content,” she said. “Imagine asking someone to attend a meeting to discuss their views and then having it set up so that CHI staff can talk but parents can only type. Where is the equity in that?” she asked.
“It is this contempt by CHI where you are invited to participate and then find we are being muzzled into silence like dogs, literally not allowed to speak or adequately express our concerns or beliefs,” she said. “It’s shocking and so frustrating to come across this attitude at every turn, but it is not really surprising any more.”
“Stephen Donnelly left the debate early and children in the gallery saw that – it felt like he was walking out and failing to show the vulnerable children in society the respect they deserved. We were disgusted,” she said.
Asked for Gript to comment, the Department of Health said the Minister “was meeting with the HSE board on Tuesday and left that meeting to come to the Dáil for the debate. The Minister addressed the debate. He had to leave the Dáil a few minutes early to return to meet with the HSE board. Minister Donnelly met with patient representative groups for Scoliosis and Spina Bifida at a meeting on Monday.”
Ms Keightley said that parents felt that was a danger an audit of CHI’s orthopaedic care announced by Minister Donnelly would focus on spending rather than mismanagement of care, and that parents did not want a situation where it was felt that the CHI was “investigating themselves”.
The Minister has said that HSE auditors will be sent into CHI hospitals to ensure €19m allocated for children’s spinal surgeries is being used for that purpose.
Minister Donnelly said that he was informed previously that the allocation of funds would bring the number of children awaiting surgeries from four months to zero, but that has not happened. He described the spinal surgery wait list as “inhumane” and that an audit was necessary.
Ms Keightley said that the campaign groups had told the Minister’s advisor in June 2022 and again in July 2022 that they had concerns regarding what was happening with the funding allocation and asked that the Minister intervene.
The CHI has been asked to comment for this article but a response has not yet been received.
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