Inquiry into spina bifida and scoliosis care could begin within six months

It was announced on September 18, 2023, following serious concerns about spinal surgery at CHI at Temple Street under one surgeon. Picture: Niall Carson/PA Wire

Little or no “truth or justice” will come from a planned inquiry into the state’s care of children with spina bifida and scoliosis if a briefing to TDs this evening (SAT) is anything to go by, the Social Democrats health spokesperson has warned.

Padraig Rice said this is his conclusion from what he has been told by Department of Health officials about a report on a scoping exercise into the potential structure and terms of reference of an inquiry.

He and other TDs, including Labour’s Marie Sherlock and Fine Gael’s Colm Burke, were briefed on the 136-page report - due to be published on Monday - by Remy Farrell (SC) into spina bifida and scoliosis care.

He was appointed by health minister Jennifer Carroll Macneill in March to look at the potential structure of a public inquiry.

The decision to hold the scoping exercise came months after the tragic death of Harvey Morrison Sherratt.

The nine-year-old, who had both scoliosis and spina bifida, waited so long for spinal surgery that the curve in his spine went from 75 degrees to 130 degrees.

By the time of his surgery in December 2024, the curve was so severe it was impossible for it to be corrected fully, and he subsequently died seven months later, last July.

This was just a few months after the publication of a Hiqa report on the use of non-medical standard springs in three children’s spinal surgeries and the identification of serious weaknesses in governance across Children's Health Ireland (CHI).

Mr Rice said: “From the very start, the families have consistently called for a public inquiry where evidence is presented in public.

“From what little we have been told, it does not look as if this is going to happen.

“Not only that, only a very narrow timeline between 2019 and 2025 will be looked at, despite the fact that this crisis in spina bifida and scoliosis care goes back to at least 2000, all the way to 2026.

“Any inquiry needs to to meet the demands of the families and children who have been failed.

“We need to be getting to a point of truth and accountability, and the families need a public inquiry that gets us to the truth and gets justice.

“If we are going to exclude so many children who were failed prior to 2019, then families are not going to get truth or justice.” He added: “There needs to be a full debate on this in the Dail, and the minister needs to come before TDs and fully explain matters.” 

Concerns over length of inquiry

Ms Sherlock said: “The scoping exercise report by Mr Farrell is to be welcomed.

Concerns over length of inquiry

“But while it looks like an inquiry could be up and running in six months, it will be a long time before anybody gets to find out what happened and why.

“This is because two of the four models of the agreed inquiry are predicted on the conclusion of ongoing inquiries.

“They are already delayed and I believe it will take years before people are finally able to get into what exactly went on at CHI and why.” One of the reports that needs to be finished is the Nayagam Review into the work of a spinal care surgeon at CHI, which began in September 2023.

Even though it was only meant to take a year, it has - as the Irish Examiner reported today (SAT) - not yet been completed.

The review was announced on September 18, 2023, because of serious concerns around spinal surgery in CHI at Temple St under one surgeon.

This included the use of non-medical springs implanted to three children.

Led by UK orthopaedics consultant Selvadurai Nayagam, phase one of his review has been completed but the HSE has confirmed that phase two of the review is “ongoing”.

It has also emerged that a wider lookback at the surgeon’s work between 2016 and 2023, announced in February this year, is only at preparation stages over six months later.

Parents raise concerns over process

Parents of children with scoliosis or spina bifida were given 24 hours notice on Friday of a briefing on Mr Farrell’s report at 4pm this afternoon (SAT).

This is ahead of the report being brought before Cabinet next Tuesday.

Parent members of the various advocacy groups who were briefed declined to comment after the meeting.

But Amanda Coughlan, who co-founded the Spina Bifida and Hydrocephalus Paediatric Advocacy Group with fellow patient advocate Una Keightley, said before the meeting many parents have “reservations” about the process currently in play ahead of any future inquiry.

They have asked for direct input into the process to agree terms of reference for the scoping exercise, and any tribunal and they had asked for access to the same information from CHI that was due to be afforded to Mr Farrell.

So disillusioned have a number of advocacy groups been that they declined to even engage in the scoping exercise.

This includes the Spina Bifida and Hydrocephalus Paediatric Advocacy Group, and three other groups, who represent more than 1,000 children.

When she made her announcement last March, the health minister stated Mr Farrell would lead a structured programme of engagement designed to “ensure the voices of families are central to the process”.

He had also been assured he would receive “all necessary support” to ensure a “patient‑centred, trauma‑informed, human‑rights‑based approach” underpinned his work “and any subsequent statutory processes”.