The families of hundreds of spinal patients have stepped away from Government-sponsored talks on an inquiry into Children’s Health Ireland (CHI), saying proposals advanced by Minister for Health Jennifer Carroll MacNeill will not deliver a “thorough examination” of their treatment. The Spina Bifida and Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network, who represent some 900 families between them, have circulated a letter to TDs and Senators saying they have withdrawn from talks on inquiry terms of reference with barrister Remy Farrell. Minister for Health Jennifer Carroll MacNeill appointed Farrell as talks facilitator in March with a mandate to deliver draft terms of reference on Tuesday. After 16 weeks of talks, however, the two groups have no confidence in the outcome. [ Inquiry into spinal care for children closer after barrister appointed to scoping exerciseOpens in new window ]Among other issues, they have concerns the current process risks leaving questions unanswered over the use of unlicensed devices, the alleged “mismanagement” of waiting lists and political promises to reduce surgery delays. The campaigners say they will present alternative terms of reference “developed in consultation with the families we represent” in the hope that Opposition parties advance them in the Dáil.However, Carroll MacNeill insists her process will continue. “Once this scoping exercise is complete, further Government approval will be sought for the final terms of reference,” the Minister’s spokesman said, referring to the Farrell talks. Patient groups are unhappy they were refused access to multiple reports on the affair and are concerned about the prospect of issues previously examined by CHI being excluded from the inquiry. “We’re not going to accept flawed terms of reference, we’ve waited a decade for this,” said Úna Keightley of the Spina Bifida group.“It’s very serious because the formation of the terms of reference is probably the most important work and it will shape the inquiry,” said Claire Cahill, leader of the Scoliosis group. “We were given assurances that children and parents and families would be centre in that process. And, unfortunately, that has not happened.”CHI declined to comment. Carroll MacNeill’s spokesman said Farrell wrote to all stakeholders seeking submissions or observations by Friday of last week. “The Minister remains committed to supporting the facilitation process and encourages all stakeholders to engage fully with the facilitator as his work continues.”The patients’ group believe the draft terms of reference “may exclude issues covered in past CHI reports, which were unpublished or not disclosed to campaigners. “Despite repeated requests, the Minister has failed to provide any reports for our consideration and continues not to respond to the correspondence we have sent outlining our concerns,” said the letter to TDs and Senators. The groups published a list of 12 “confidential” reports to which they were refused access during the Farrell talks. “Their existence reinforces our concern that transparency remains absent from a process that is presented as child-centred and family-centred yet asks families to place their trust in institutions that continue to withhold significant information from public view.”Keightley said: “It’s farcical that our children’s data has been used in generating these reports and yet we are not privy to their contents, but the facilitator is.”