Carroll MacNeill urges advocacy groups to engage with CHI scoping exercise

Health Minister Jennifer Carroll MacNeill: Pic:PA Wire

The health minister has called on advocacy groups to engage with an independent facilitator examining issues at Children's Health Ireland (CHI).

In 2025, the Government confirmed it would launch a statutory inquiry into scoliosis and spina bifida care at Children’s Health Ireland, following meetings between Tánaiste Simon Harris, Health Minister Jennifer Carroll MacNeill and the parents of Harvey Morrison Sherratt.

A scoping exercise started in March, with Senior Counsel Remy Farrell appointed to engage with stakeholders “on scoping the content of potential terms of reference for an inquiry”.

However, over the weekend it emerged that two groups claiming to represent 900 affected families - Spina Bifida and Hydrocephalus Paediatric Advocacy Group along with the Scoliosis Advocacy Network - had written to the minister to inform her that they "cannot support her flawed scoping process which hinders a full transparent investigation".

At the opening of a new HSE surgical hub in Swords, Co Dublin on Monday, Ms Carroll MacNeill said eight advocacy groups remained in the process and called for those who had exited to return.

"We haven't committed to any form of (inquiry). This whole process with the facilitator is to look at what sort of statutory inquiry, and of course, there are a range of different models. We've never been preemptive in relation to that. 

"The government made a decision that we would hold a statutory inquiry into the issues connected with CHI. I think there are eight different advocacy groups, and Remy Farrell has been engaging with nearly all of those. There is one in particular that hasn't engaged. He is absolutely available to engage with them and would welcome engagement. He has written to them a number of times, looking for engagement. We would encourage that."

She said Mr Farrell had come back to her and asked her to extend the terms of reference to include the group representing those parents of children with hip dysplasia.

"So we did extend that so that hip dysplasia advocacy group is now included."

Ms Carroll MacNeill said no group "takes precedence" over another and that groups should engage with Mr Farrell.

"I have great respect for all of the different groups, and no one parent, no one child, no one group takes precedence over any other. How could that possibly be? Remy Farrell is there to engage with all of them, and he would welcome the broadest, maximum best engagement that he can possibly facilitate. 

"And I hope that groups will take him up, all groups, including those who have not yet. There's no voice that's more important. Every single child, every single voice, all of them have the opportunity to participate to help shape what we might do next. And I would welcome that they all did."

Co-lead of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group Úna Keightley told Morning Ireland that families had "very little information" about the process.

"Remy Farrell has access to CHI reports that unfortunately the families don't, and we are being told that they will not be disclosed to us. We have very little information," she said.

Social Democrats Health spokesperson Pádraig Rice said that the withdrawal was "a mess of the Minister for Health’s own making".