Pain management the only option for scoliosis patient Ivy as situation for children in Ireland remains bleak

Ivy* was a child in 2020 when she brought her complaint about access to scoliosis surgery to the Ombudsman for Children’s Office (OCO). She had suffered long term health implications from her 5 year wait for spinal fusion surgery and then needed hip surgery to improve her standard of living. An update into Ivy’s case, published today, shows that two years on from her spinal surgery doctors have deemed it too risky for Ivy, who is now 22, to undergo the hip surgery that she needs.

As of September 2024, there are also still 264 children waiting for scoliosis surgery at Children’s Health Ireland (CHI). The OCO remains deeply concerned about the overall situation for children needing scoliosis surgery in Ireland. The 4 month wait commitment, made by the then Minister for Health Simon Harris in 2017, has not been met for every child and children’s conditions are worsening as a result. On top of this, the current Minister for Health, Stephen Donnelly committed €19m specifically for scoliosis treatment and an audit has been commissioned by the HSE as he had concerns that the funds were not spent as intended.

Commenting on our Update into Ivy’s investigation, the Ombudsman for Children, Dr Niall Muldoon, said:

“A lot has happened since we first published our investigation into Ivy’s case last June that has further shaken confidence in scoliosis treatment services for children in Ireland.

“Revelations around the use of unlicensed devices in the operating theatre and more recently the news that money intended for scoliosis surgery may not have been spent as intended, are not only concerning but deeply damaging for relations between the different parties involved. There have been nine different reviews and audits commissioned but there is no clarity or agreement on how to integrate the learning from those reviews and audits.

“Our update on Ivy’s case today comes at a time when the situation for children needing scoliosis surgery in Ireland remains critical. It also comes as we face a general election and there is a risk of this issue falling off the priority list once again.

“We know that as of September there were 264 children still waiting for this vital treatment and whose conditions may be deteriorating as a result. Budget 2025 did not allocate specific funding to scoliosis.

“CHI has made progress on some of the recommendations we made in relation to Ivy’s case and this is welcome, but many of our recommendations were extremely basic e.g. communications with parents, information gathering to inform wait listing, clarity around the role of multi-disciplinary teams and complaint handling. Clearly, the structures in administration and planning are still not good enough. It is now for CHI to see that these efforts to improve the fundamentals have a positive impact on children with scoliosis.

“We also note that the revelations have resulted in the breakdown of trust in the already fraught relationships between CHI and some of the advocacy groups and the children and families they represent. This is something we urge CHI to take steps to rectify this as the experiences of those children and families is fundamental to creating safe and timely treatment to children suffering with scoliosis.

“Sadly for Ivy and her family, the medical struggles continue and will need to be managed over the course of her life.

“We are really grateful to them for their commitment to highlighting the difficulties experienced by other children in accessing timely and coordinated treatment for Scoliosis care.”

ENDS

*Ivy is not the real name of the child involved.

• 16 October 2024
• Type: Press Release
• Topic: Health