Scoliosis patient group withdraws from planned inquiry into children’s care

Health minister Jennifer Carroll MacNeill said she had asked for additional time to be given to the scoping exercise. Picture: Marc O’Sullivan

Another organisation representing patients with scoliosis has withdrawn from the planned inquiry into children’s care as concerns grow about the process.

A scoping exercise was opened in March to develop terms of reference and a potential structure for a statutory public inquiry into spina bifida and complex scoliosis services.

Last weekend, two advocacy groups wrote to health minister Jennifer Carroll MacNeill, sharing their concerns and withdrawing from the process.

On Friday, families represented by Scoliosis Ireland made the same decision.

Founder Gary Farrell said he received communication about the scoping exercise from the independent facilitator.

However, on Friday, he emailed to notify them of his decision to leave the process.

“I feel as if the families themselves aren’t at the centre of this,” he said. “I feel as if they’ve been let down.” 

He echoed concerns the other groups have about unpublished reports on this area of care, which he wants to see made public before any inquiry starts.

Earlier, Ms Carroll MacNeill said she has asked for additional time to be given to this phase of work.

She has raised this with the independent facilitator Remy Farrell, senior counsel.

“I have suggested to him that we leave more time for facilitation or engagement for anybody who wants to do that, recognising there are some groups who may wish to at some point engage.

“And also that there are some people contacting him independently who want to engage,” she said.

“This is a scoping investigation. What it’s doing is looking at if there was an inquiry, what should that include? And I think the most important perspectives in that are all of the people who are involved, and this is the process by which they can contribute to that.” 

Speaking after an event to mark 150 years of rehabilitation services at Clontarf Hospital, she said: “I would hope that all families, all advocates will engage with that process.” 

The facilitator wishes to engage with all families and groups, she added.

“Indeed, we’ve had families contact him who have not been part of any advocacy groups,” she said.

“Every family experience is important, every patient experience is important, and we want to hear from as many of them as possible.” 

The Scoliosis Advocacy Network, as well as the Spina Bifida and/or Hydrocephalus Paediatric Advocacy Group (SBHPAG), led calls for the inquiry. 

They represent an estimated 900 families, spokespeople have said. 

They withdrew last weekend.

Their stance is supported by the bereaved parents of Harvey Morrison Sherratt, 9, who died last July.

His mother Gillian said this week on X: “Our concern, as well as SBHPAG and the Scoliosis Network, is and always will be, the children and families at the centre of this. Nothing more, nothing less.”