Patient groups says families may boycott HSE review of spinal surgery 

The advocacy groups claim the HSE and Children’s Health Ireland are 'attempting to scapegoat' doctors instead of addressing wider problems in spinal care at Temple Street hospital. Picture: Sasko Lazarov/RollingNews

Patient groups representing children with spina bifida and scoliosis say their families may boycott a HSE external review into safety concerns around complex spinal surgery in Children’s Health Ireland at Temple Street, Dublin.

They also claim the HSE and Children’s Health Ireland are “attempting to scapegoat” doctors instead of addressing wider problems in spinal care. Their comments follow a week of controversy over revelations in reports published by the hospital group this week and a commitment by the HSE to run an external review into problems identified in those reports.

The Spina Bifida & Hydrocephalus Paediatric Advocacy Group and Scoliosis Advocacy Network joined together on Friday to say that a boycott is now being considered of the review which is led by the HSE.

They have asked to meet Taoiseach Leo Varadkar.

"We will seek answers and set out what we believe are the requirements for the appropriate and necessary paediatric care of our children and for an inquiry," their statement said. 

If this is not accepted by the Government we will be advising our membership not to authorise the release of their medical record detail for any HSE/Children’s Health Ireland orchestrated review and not to participate in any way. 

HSE CEO Bernard Gloster said on Thursday that the proposed review could take a year, with interim reports published along the way due to the complexity of what is involved.

However, the families are calling for swifter action. “It’s too long to wait when children’s health is at issue,” they said.

They raised concerns about the plan to focus the HSE-commissioned review mainly on the work of one consultant surgeon.

“[This] is viewed by our membership as an attempt to deflect attention from the major HSE/Children’s Health Ireland derelictions of duties that have occurred,” the joint statement states.

They said: “It is accepted that there are adverse issues to be clarified” in relation to the use of the devices, but that “those issues are far from the full extent of the paediatric care failings that have occurred”. 

"Children’s Health Ireland and HSE are attempting to scapegoat one or two to attempt to move the focus off them."

The HSE and Children’s Health Ireland were approached for comment. 

The families’ concerns centre on a series of reports and reviews published by Children’s Health Ireland this week. These showed a high level of complications leading to unplanned further surgery among a group of 16 children, with 33 returns to theatre in one case.

Concerns were also raised about use of an unauthorised implantable device in three children.

Children’s Health Ireland clinical director Ike Okafor described these devices as “springs” and on Thursday told RTÉ they were ordered from another company and were not the type found in retail establishments.

On Friday night, the HSE issued a statement saying it and Children’s Health Ireland “acknowledge the deep distress experienced by children with spina bifida and scoliosis and their families” and apologise “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”.

It said it understands the advocacy groups’ anger.

“If the groups would find it useful, the CEO of the HSE Bernard Gloster would be very happy to meet them.”