A teenage girl who had to wait for five years for scoliosis surgery could not meet her friends, go to school or even breathe at times as her condition worsened, an investigation published by the Ombudsman for Children’s Office (OCO) has revealed.
17-year-old "Ivy" had her spinal curvature deteriorate from 30 degrees to over 135 degrees in the five years it took for her to get a spinal fusion surgery. The teen, who has cerebral palsy, eventually had her surgery in 2021 - and her pain was significantly reduced, and her quality of life improved.
OCO Director of Investigations Nuala Ward said: “Ivy’s story shows the devastating consequences that waiting for this life-changing surgery can have on a child. 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."
The OCO's 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 that this case "is not just about Ivy" as they are publishing it "on behalf of the 309 children and their families who, as of May 2023, were waiting for scoliosis treatment in Ireland".
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While there have been some improvements with additional investment in 2022, Ms Ward said, the Government must ensure that no child will be waiting longer than four months for their scoliosis surgery in Ireland. She added: "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."
In its findings, the OCO determined that the administrative actions of Children’s Health Ireland (CHI) had a negative impact on Ivy’s life and made recommendations to address those concerns. These included 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.
Ms Ward also said that professionals must pay attention to parents, children and GPs when they contact a hospital to say a child’s condition is deteriorating. She added: "This is vital information that should be considered when reviewing a case and must never be ignored."
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In a statement, CHI said it fully accepted the report, adding that 72 per cent of the actions in the report had been completed in the planned timeframe. It said that arrangements have been made for the Clinical Directorate team to meet with Ivy and her family to discuss the learnings from the report.
CHI also said it is fully committed to maintaining "the highest possible levels of quality care, access to services, and open communications for the children and young people we care for". There are currently 29 patients at Temple Street Hospital awaiting spinal fusion surgery, CHI explained, acknowledging that there are "lengthy waiting times" for some of these surgeries but CHI is working to improve capacity.
CHI Chief Executive Eilish 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.
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