The Clinical Director of Children's Health Ireland (CHI) has apologised to a teenage girl with cerebral palsy, her family and to all children waiting excessively for surgery for scoliosis.
Paula Kelly, who is also an orthopaedic surgeon, said there were 287 children waiting for scoliosis surgery and there had been a significant investment by the Department of Health to increase capacity and to have children treated in a timely manner.
Ms Kelly said that capacity was increased last year by 43%.
She said that currently 250 spinal fusions are performed across the CHI sites and that patient safety is a priority.
She said that a fifth theatre is due to open in the children's hospital in September and that four extra surgical beds will open there this month and four more beds will open at the end of Summer at Crumlin to increase capacity.
'Ivy', 17, had to wait five years for spinal fusion surgery for scoliosis which saw her spinal curvature deteriorate from 30 to over 135 degrees in that time, according to an investigation into the case by the Ombudsman for Children's Office (OCO).
Ivy and her family told the ombudsman about the enormous toll that the uncertainty surrounding her surgery had taken on Ivy's life, both physically and mentally.
She said that she could not meet her friends, go to school or even breathe at times as the curvature worsened.
When Ivy eventually had her surgery in 2021, her pain was significantly reduced and her quality of life improved.
The name Ivy has been given to the case for privacy reasons.
In its findings, published today, the OCO determined that the administrative actions of CHI, the body which manages the children's hospitals, had a negative impact on Ivy’s life and made seven recommendations to address those concerns.
These include that CHI carries out an audit of the waiting list for children's scoliosis care and to allow for the patient or their family/caregiver or GP to initiate a review of their own care.
Ivy's story shows the devastating consequences that waiting for this life-changing surgery can have on a child, OCO Director of Investigations Nuala Ward said.
She said that the case is also being published on behalf of the 309 children and their families who, as of May 2023, were waiting for scoliosis treatment in Ireland.
Despite promises from the Government that no child would wait more than four months for scoliosis surgery there are more than 120 children waiting more than 12 months for the procedure, Ms Ward said.
"In 2018, we raised serious concerns about the children in Ireland waiting for scoliosis and they have been repeatedly promised that no child will wait longer than four months for this surgery."
Speaking on RTÉ's Morning Ireland, Ms Ward said the case came to the attention of the Ombudsman in 2020 after the family tried to raise their concerns about the girl’s deteriorating condition with the hospital, and they felt they were "getting nowhere".
"We sought records in relation to how did all the specialists come together to plan for her care and we couldn't find it."
She said that as Ivy waited for the surgery she was experiencing "incredible pain".
"She ended up only going to school for two or one days a week ... she told us about how she struggled to breathe."
The longer you wait, the more complicated the surgery can be, which affects outcomes, Ms Ward said.
"So, this is a dangerous waiting list that really needs to be tackled head on in the best interest of the children that are waiting, and the families are suffering such distress every day."
In a statement earlier, CHI said it fully accepted the report and that it is committed to maintaining the highest possible levels of quality care.
It said that 72% of the actions in the report had been completed in the planned timeframe.
CHI said there are currently 29 patients at Temple Street Hospital awaiting spinal fusion surgery.
It acknowledged that there are lengthy waiting times for some of these surgeries and CHI is working to improve capacity.
CHI Chief Executive Eilísh Hardiman said that both at CHI Crumlin and Temple Street there are dedicated contacts in place for parents and guardians where they can reach clinical nurse specialists known to patients and who can answer queries.
