Families Voice Concerns Over Transparency of Children's Health Ireland Inquiry

Families central to a planned inquiry into Children's Health Ireland (CHI) have voiced strong concerns regarding the transparency and family-centered nature of the investigation. Two major advocacy groups, the Spina Bifida and Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network, representing over 900 affected families, have written to health officials and opposition politicians. They declared their inability to endorse Minister Jennifer Carroll MacNeill's "flawed scoping process," arguing it hinders a comprehensive and transparent investigation. Parents feel compelled to withdraw from the scoping exercise, believing the current approach prioritizes institutional protection over the needs of the children. Gillian Sherratt, mother of Harvey Morrison, who died last July at age nine after experiencing severe scoliosis and spina bifida, highlighted the disconnect between initial promises and the current reality. She stated parents were initially assured of a child-centered inquiry where their voices would shape the terms of reference. However, she noted that unpublished internal CHI reports are not being considered, leading to fears the inquiry will not adequately uncover the systemic issues at CHI. "For us to have any involvement in an inquiry, it needs to be one that will be robust and will truly get to the root cause of all of these problems and will ensure that history doesn't repeat itself," Sherratt said. Harvey had been on a waiting list for spinal surgery since February 2022, but by the time of his operation in November 2024, his spine's curvature had reached 130 degrees. It later emerged he was removed from a CHI waiting list for urgent scoliosis surgery without his parents' knowledge, reportedly because he was deemed a palliative patient. Sherratt described this classification as a "gut punch," feeling her son had been written off. Furthermore, unpublished CHI reports are reportedly not being made available to Remy Farrell, the Senior Counsel tasked with the independent scoping exercise, whose work will inform the inquiry's Terms of Reference.

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we cannot support her flawed scoping process which hinders a full transparent investigation