Underspend on children with scoliosis and spina bifida 'shocking', says advocacy group

Amanda Coughlan-Santry said the audit now raises questions as to whether the funding would have been put in place without those public campaigns. File photo: Gareth Chaney/Collins Photos

An audit of spending by Children’s Health Ireland on children with scoliosis and spina bifida should have been shared with families before the media, patient advocates have said.

The HSE audit, published Wednesday, identified no concerns around how funding that targeted the care of these children was spent.

However, it also said a target to have no child waiting longer than four months was not reached and noted underspending of the funds in many areas.

The decision to publish the audit on the HSE website without alerting families first is “very disappointing” said Amanda Coughlan-Santry, co-lead of the Spina Bifida Hydrocephalous Paediatric Advocacy Group (SBHPAG)

“To say they underspent and that for resources allocated in 2022 their impact wasn’t felt until 2024 is shocking,” she said.

“It shows the lack of urgency in addressing the suffering of children up until serious public pressure came in the form of advocacy groups, families and the media actively working together to highlight how disgracefully some of the most vulnerable children in society were treated.” 

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The funding was allocated in 2022 with an amended plan put in place in 2023.

SBHPAG and the Scoliosis Advocacy Network were to that point sharing stories from their members of facing months of delays for vital surgery. SBHPAG launched a website called ‘Páistí in Pain” to highlight the situation.

Ms Coughlan-Santry said this audit now raises questions as to whether the funding would have been put in place without those public campaigns.

“Why was it not done prior to the public outcry?” she said.

It’s the zero accountability that galls me. Children have suffered, children have died and children will feel the ramifications in the delays in their care for years to come. 

The audit was undertaken after Health Minister Stephen Donnelly raised questions in July about how a tranche of €19m was being spent in the hospitals.

Mr Donnelly said of the findings: “While the audit finds the funding was allocated and spent for the benefit of children, it concludes that CHI did not prioritise children with scoliosis and spina bifida as was clearly intended by Government.” 

The minister, who was not re-elected, continues to work with the CHI board and expects this will be continued by his successor.

The audit acknowledged some of the overall €34.78m was used for general capacity building including in acute medicine. The team were told by CHI this has an indirect benefit for the children with scoliosis and spina bifida.

The report also highlighted other shortfalls, including a shortfall of 197 children in the cumulative targets for ‘Non-Complex’ cases. However, consultants interviewed in September 2024 “highlighted definite improvement” linked to the funding, the audit said.