Children 'deserve a public inquiry' into spinal surgeries akin to CervicalCheck inquiry, say parents

Members of parent groups (left to right) Amanda Coughlan-Santry, Una Keightley and Claire Cahill in 2023. 'The Hiqa report has left more questions than answers.' File photo: Gareth Chaney/ Collins

Parents of sick children say they are once again reading a damning report on Children’s Health Ireland (CHI) while spinal surgery delays continue unabated. 

Their calls for this to stop comes as the head of the HSE met with the CHI board on Tuesday. The meeting was described as “constructive". 

Four women, representing more than 900 families, have called for urgent changes to spinal care and for a public inquiry to analyse current problems. They also want to meet health minister Jennifer Carroll MacNeill.

The group has pledged to begin releasing “shocking” stories of children on waiting lists otherwise, adding: “These brilliant, bright young people deserve a public inquiry.”

A week of controversy has followed a Hiqa report on the use of non-medical standard springs in three children’s spinal surgeries. They also identified weaknesses in governance across CHI.

Amanda Coughlan-Santry and Una Keightley co-founded the Spina Bifida and Hydrocephalus Paediatric Advocacy Group.

Ms Keightley said

The Hiqa report confirms what we’ve been saying for years. That CHI suffers from deficits in governance, oversight and in accountability. 

"But let us be clear, the Hiqa report has left more questions than answers.” 

Families are now also reading about recalls for hip dysplasia operations as well as IT problems, she added.

“This is not the method [through which] parents should find out, reading it in the media and then waiting for the postman to see what letter will drop in to their letterbox,” she said.

Ms Coughlan-Santry’s son was on a scoliosis waiting list for four years. “When his time came, it was too late. My son and I are living proof of the failures that occurred in CHI,” she said. 

She urged other young teenagers not be left in the same position.

Asked about the Taoiseach’s comments in support of the CHI board last week, Ms Coughlan-Santry said: “I’d like to know how Taoiseach Micheal Martin would feel about knowing we met with the CHI board in 2018 and highlighted our concerns. Does he still stand over those comments now?” 

CHI board chairman, Dr Jim Browne, resigned last week. Among the 10 remaining members, four were appointed in 2018, one in 2020, one in 2024 and four this year.

Amanda Coughlan-Santry with her son TJ who suffers from spina bifida pictured at home in Tullamore in 2021. TJ was on a scoliosis waiting list for four years. File photo: Ray Ryan

Ms Coughlan-Santry said: “What cost is too high to protect our children and the ones coming behind them from future harm?” 

The mothers began calling for an inquiry in late 2023 when revelations about the springs first emerged. “We could be 18 months into this,” Ms Keightley said, saying Dr Gabriel Scally's approach to the Cervical Check inquiry could be followed. 

Claire Cahill, co-founder of the Scoliosis Advocacy Network with Michelle Long, said they want solutions.

“Our asks are a meeting with the minister of health and the Taoiseach, a fully-independent public inquiry developed in collaboration with families to uncover the full extent of failures in paediatric spina bifida and spinal care,” she said.

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HSE CEO Bernard Gloster has met with the CHI board to hear their response to the Hiqa report. He and his team intend to “continue to engage with and support CHI” so all necessary improvements are made, he said. 

“What is essential now is a full open process of improvement, rebuilding public confidence and keeping adequate focus on the work ahead to open the new children’s hospital,” he added. 

“I am encouraged by and grateful to the board for the engagement and I will be reporting further over time on these matters to the department and Minister Carroll MacNeill.”