Parents of children needing spinal surgery say they will boycott the proposed external review into services at Temple Street hospital unless its terms are widened.
The parents say some of their children’s records were used in an earlier review of Temple Street by experts from Boston without their consent.
The families will take legal action if necessary to prevent their children’s records being used in the planned external review without their agreement, according to a joint statement from two patient groups.
The HSE this week announced an external review by a UK expert of spinal surgeries at the hospital, which will examine high complication rates in the work of one consultant. This followed an investigation by the Boston team that found high rates of repeat operations and wound infection among children with spina bifida who required spinal surgery.
The Spina Bifida & Hydrocephalus Paediatric Advocacy Group (SBHPAG) and the Scoliosis Advocacy Network (SAN) say they learned only this week that the earlier Boston review had included children for whom consent had not been obtained.
The two groups say this is unacceptable and they will report it to the Data Protection Commissioner.
“Learning that our children’s data was reviewed without our knowledge or consent is a further violation of trust and invasion of privacy, and has added to the tsunami of worry and fear for parents,” said Michelle Long, co-founder of SAN.
Children’s Health Ireland (CHI), which is responsible for paediatric care nationally, has been asked to comment on this allegation.
The statement by the two groups accuses the HSE and CHI of attempting to “deflect attention” from their “major derelictions of duty”.
“There are adverse issues to be clarified both about governance and a medical practitioner arising from the insertion of a spring device in some children, but these are far from the full extent of the failings that have occurred,” they say.
“CHI and HSE are attempting to scapegoat one or two people to attempt to move the focus off them in the proposed further external review/investigation agenda. We will determinedly fight this.
“The terms of reference will be set by us, the representatives of the families. We are experts through lived experience. We will not allow them to be restricted by CHI and the HSE, the very bodies that have consistently failed our beautiful children and us as parents.”
The groups say many other surgery-related issues other than spinal surgery require urgent investigation. Overall, spina bifida and scoliosis services provided by CHI need to be reviewed “in their entirety”.
They also say the expected duration of the review – estimated at up to one year – is unacceptable.
They have requested a meeting with Taoiseach Leo Varadkar, at which they plan to set out their requirements for a wider inquiry into paediatric care.
“If this is not accepted by the Government we will be advising our membership not to authorise the release of their medical records detail for any HSE/CHI-orchestrated review and not to participate in any way,” they say.
“Our members will boycott the proposed HSE external review. The terms of reference indicated are too limited. The HSE/CHI should not be drafting those terms of reference for an inquiry into their own failures,” said Amanda Coughlan-Santry, co-leader of the SBHPAG.
Speaking in New York on Friday evening, ahead of addressing the United Nations, Mr Varadkar said that over many years successive ministers had poured money into the spinal surgery service for children, and while it had improved somewhat, it was “well short of where it needs to be”.
He said there was once in a century opportunity in 2025 with the move to the new national children’s hospital “to get this right and started off well in a new setting”.
He said he had spoken to the Minister for Health Stephen Donnelly and the HSE chief clinical officer Colm Henry regarding the current controversy over spinal surgery for children.
The Health Service Executive said in a statement on Friday evening: “The HSE and CHI acknowledge the deep distress experienced by children with spina bifida and scoliosis and their families. We further acknowledge and apologise very sincerely for the huge additions to this distress caused by the unacceptably long waiting lists for surgery, and the failings in the care we have provided to these children which have been the subject of recent reports.
“The external review was commissioned by the HSE following the completion of reports by CHI. It will not be conducted by the HSE or CHI but by Dr Selvadurai Nagayam, entirely independent of us. Its terms of reference are broad, and they allow for review of the governance of the Paediatric Orthopaedic Surgery Service, implications for service capacity and access, the delivery of the current agreed plans and other matters.
“We understand the advocacy groups’ deep frustration and anger and we understand that the Minister for Health has offered to meet them.” The statement also said that HSE CEO Bernard Gloster would be happy to meet the groups, if they would find it useful.