A teenage girl with cerebral palsy, who had to wait for five years for spinal fusion surgery for scoliosis, saw her spinal curvature worsen from 30° to over 135° in that time.
That's according to a new report from the Ombudsman for Children's Office (OCO), which it said shows the "devastating consequences" that waiting for life-changing surgery can have.
An investigation into 17-year-old Ivy's case has been published by the OCO.
Ivy and her family told the Ombudsman the uncertainty surrounding her surgery had taken an "enormous toll" on Ivy's life, both physically and mentally.
They said she could not meet her friends, go to school or even breathe at times as the curvature worsened.
'Significant distress'
In its findings, the OCO said the administrative actions of Children's Health Ireland (CHI) had "a negative impact on Ivy's life" and has made seven recommendations to address those concerns.
These include that CHI carry 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.
OCO Director of Investigations, Nuala Ward, said Ivy's family had previously raised concerns.
"When Ivy and her family came to us, after previously raising their concerns a number of times with their GP, consultant and Children’s Health Ireland, it was clear that the whole family had suffered significant distress and anguish at Ivy’s deteriorating condition in the five years she had to wait for surgery," she said.
"Our investigation found a number of administrative failures in how Ivy’s case was dealt with by CHI, including poor communication with her and her family about her care".
Ms Ward said they have made several recommendations to address concerns, and to try and prevent a repeat of these mistakes.
"A key issue we raised is that professionals must pay attention to parents, children and indeed, GPs, when they contact a hospital to say a child’s condition is deteriorating," she said.
"This is vital information that should be considered when reviewing a case and must never be ignored".
'309 children are waiting'
Ms Ward said this case is not just about Ivy.
"We are publishing this case on behalf of the 309 children and their families who, as of May 2023, were waiting for scoliosis treatment in Ireland.
"In 2017 we published Waiting for Scoliosis Treatment: A Children’s Rights Issue about ongoing delays and the failure, by Government, to adequately address the issue of access to scoliosis treatment for children.
"We know there has some been improvements with additional investment in 2022, but we believe that the Government must honour the promise it made back in 2017: 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.
"We must never forget, that these children are in significant pain and distress while they wait, their life suspended, their childhood passing them by.
"They need to believe that the Government cares and will make right their promise to them," she added.
When Ivy eventually had her surgery in 2021, her pain was significantly reduced and her quality of life improved.
