‘Worse than we feared’: Patient advocacy groups criticise proposed scoliosis and spina bifida inquiry

Patient advocacy groups have criticised the proposed commission of investigation into the care received by children with scoliosis and spina bifida, describing it as “extraordinarily narrow”.The Government last year agreed to hold a statutory inquiry into spina bifida and scoliosis services following a number of controversies at the children’s hospital group, including unauthorised implantation of springs in children with scoliosis, alleged waiting-list irregularities and unnecessary hip surgeries.Advocacy groups met policymakers on a number of occasions last year to call for the inquiry, which got significant public attention following the death of nine-year-old Harvey Morrison Sherratt, who had scoliosis and other health issues.Minister for Health Jennifer Carroll MacNeill on Monday published the final report on the scoping exercise for the Children’s Health Ireland’s (CHI) inquiry into spina bifida and complex scoliosis, which was led by senior counsel Remy Farrell.READ MOREThe 136-page report recommends that the inquiry take the form of a commission of investigation, which means it would be largely conducted in private. Many of the advocacy groups had been calling for a public tribunal of inquiry.The report recommends that the inquiry examine the period from January 1st, 2019, to December 31st last. It should be divided into four distinct “modules”, the report says: waiting lists, spinal surgery, hip dysplasia and the Crumlin Orphans.Crumlin Orphans is a term that was used in an internal CHI report that spoke about patients of Crumlin children’s hospital who were not transferred to Temple Street. Concerns were raised that these children received inferior care.The module on waiting lists should be split into two, according to the recommendations. One half should allow patients and families to give testimony in relation to the impact of waiting-list delays on them in a “non-adversarial” manner.[ Spinal surgeries report: The story behind the springs used on childrenOpens in new window ]There have been a number of reports examining spinal services in recent years, including one that is ongoing by Selvadurai Nayagam and another by the Health Information and Quality Authority into unauthorised use of springs, published last year.Farrell said a focus on these issues in the statutory inquiry would “by its nature, result in a substantial degree of unnecessary duplication”. However, he recommended the inquiry investigates whether CHI management was aware of the use of intended use of the non-CE marked springs in Temple Street between 2020 and 2022.In a statement, the Scoliosis Advocacy Network criticised the recommendations from the report, describing it as “worse than we feared”.“What is proposed is extraordinarily narrow. This cannot become an administrative examination of waiting lists, processes and dates. It must examine what actually happened to children,” the group said.“The scoliosis crisis did not begin in 2019. Children were already waiting, funding had been allocated, outsourcing was under way and commitments had been made about timely access to surgery. Starting in 2019 risks excluding crucial years of decisions and, most importantly, the experiences of children.”The network said it had called for a public tribunal because “families wanted openness, transparency and accountability”. It said the accepted recommendations were “not what we called for”.The Spina Bifida and Hydrocephalus Paediatric Advocacy Group said the commission “falls far short of the comprehensive inquiry families were promised”. It said the scope had “significant gaps in both time frame and clinical focus” and risked becoming a “farcical exercise in administrative sleight of hand”.Both groups withdrew from the scoping exercise during the summer due to concerns about access to confidential documents. Four other advocacy groups engaged with the scoping exercise.In a statement, CHI said it would “work with the Government and our staff to ensure an efficient, fair and child-centred outcome”. “We will be seeking more information on the terms of reference, planned processes, procedures and timelines so that staff can be prepared and adequately supported during this process while also minimising disruption to the delivery of clinical services,” it said.“CHI acknowledges the courage of the children, young people and families who have shared their experiences. Their voices must be heard, and where failings have been identified, they will be acknowledged, addressed and learned from.”