Children left waiting in “unimaginable pain” for essential scoliosis surgeries have been “failed by the state” Minister Stephen Donnelly has admitted after he confirmed that the majority of a €19 million fund allocated to cut waiting lists for those surgeries was spent “far more broadly” by Children’s Health Ireland (CHI).
While the Minister said that it was “deeply frustrating” that the CHI had not reduced lists, one mother told Gript that parents had raised concerns that funding for children’s scoliosis surgeries was being spent elsewhere with the Minister as far back as June 2022.
Sadly foreseen many years ago.
— Úna Keightley (@UnaKeightley) July 3, 2024
Still ongoing. https://t.co/NiAuPPIgm9
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, shared her belief that it was “untrue” to “claim that there was no knowledge that money was being allocated elsewhere.”
“There was knowledge,” she said, sharing an email showing that she and another parent had contacted the Minister and his advisor “numerous times around the allocation of this funding”.
Ms Keightley said that campaigners now know “we were correct” and that monies allocated to their children were not spent in a way that prioritised cutting waiting lists for surgeries.
“The Minister was informed on numerous occasions by the Spina Bifida & Hydrocephalus Paediatric Advocacy two years ago that monies were not being allocated as agreed,” she told Gript.
“He failed to act. Children’s Health Ireland management and the Board have allowed misspending of funds, poor clinical outcomes and harm to come to children living with spina bifida/and or scoliosis,” she said.
“Blatant discrimination has occurred under CHI board and managements watch, they were given monies to fund specifically for kids with spina bifida/scoliosis,” she said, adding that it seemed like children living with disabilities were not worthy and monies were funnelled elsewhere.
The Minister told the Seanad yesterday that the €19m investment was used to hire 200 additional staff including nurses, consultants, anaesthesiologists and radiographers, and that a fifth operating theatre in Temple Street Hospital opened last year, as well as a second MRI facility in Crumlin Hospital in addition to new beds.
“There needs to be a statutory inquiry to who knew what and when. The parents needs this but also the front line clinical staff who provide the highest level of care to our children in difficult circumstances they have been failed too in this,” she said.
She previously told Gript that it was her opinion that the decision to “run CHI like a business” would have a detrimental effect on care for children, as a “metric-driven approach” would not ensure that the sickest children would be treated first. “The number of children with complex surgeries needs has not gone down,” she said in February of this year.
“Some children may now be inoperable because of all the delays,” Ms Keightley said. “Their difficulties they face are enormous, their abilities may be permanently diminished.”
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.
In 2022, CHI was allocated €19 million to improve spinal and orthopaedic services and reduce waiting lists, as public concern grew over children who were suffering and in pain, with some being left for up to seven years in order to receive essential surgery.
The goal of the funding was to ensure no child waited longer than four months for spinal surgery. However there are currently 246 on waiting lists for scoliosis surgery – and now the Minister has said that the funds were spent “far more broadly”.
The Health Minister told the Seanad yesterday that he “asked the HSE internal audit function to review the allocation of the €19m committed to spinal and orthopaedic services to ensure that maximum benefit is being derived from this investment.”
“I am awaiting the final report to this review. However, it is clear to me from initial discussions that the majority of that funding, intended for spinal services, was allocated far more broadly across Children’s Health Ireland.”
Parents reacted to the admission in shock and anger, with one mother, Gillian Sherratt, saying: “Shame on each and every single person that had a hand in this.”
“Imagine this. Putting your child’s image and health background up on to a public website along with around 80 other children in similar situations in a fight to get funding allocated to help ease their pain, and get them the treatment each and every one of them deserve. Imagine the relief you felt when the €19million was approved and you finally felt like things would improve. Imagine then, finding out that [Children’s Health Ireland] decided your children weren’t worth it. Despite that group of children and parents fighting to get the money, they decided they would just spend it as they see fit,” the mother posted on X.
“After all this time we finally have proof that our children are being neglected by the state. Our children are seen as less deserving and less important,” she wrote.
“Imagine when these children grow up-to then learn that this is why they were in so much pain through childhood. Then [Stephen Donnelly] actually trying to say he didn’t know, it’s such an absolute slap in the face.”
“The very bloody least he could do for these kids now is hold his hands up, and admit he has failed them. Admit he turned a blind eye until it was brought to public attention,” she said.
“Shame on each and every single person that had a hand in this. Absolutely vile human beings.”
Yesterday in the Seanad, Senator Michael McDowell said that the admission by the Health Minister was “astonishing” and said “heads should roll in the relevant area”.
He said: “Money provided for scoliosis treatment was taken and applied elsewhere,” and added that if he were the Minister he “would demand accountability.”
Earlier this year, Úna Keightley also said she felt that neither the CHI nor the government was listening – that “they talk but there’s no action” – for children who 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.”
In 2017, then Minster for Health, now Taoiseach, Simon Harris, said that “by the end of this year no child will wait longer for a scoliosis procedure than 4 months”.
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