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Patient groups to urge Taoiseach to set up independent taskforce for children's spinal surgeries

ADVOCACY GROUPS FOR scoliosis and spina bifida patients will call for an independent taskforce to take over management of spinal surgical lists and complex surgical care for children with spina bifida, hydrocephalus and scoliosis when they meet the Taoiseach this afternoon.

The Spina Bifida and Hydrocephalus Paediatric Advocacy Group and The Scoliosis Advocacy Network have called for a full statutory investigation into the HSE and Children’s Health Ireland (CHI) following the controversy surrounding children’s spinal surgeries at Temple Street hospital. 

The groups, who represent 16 of the 19 children who suffered surgery complications at Temple Street and their families, said they want “no part” of an external HSE review into CHI’s spinal surgery services unless the terms of reference are widened significantly

Amanda Coughlan-Santry, Úna Keightley, Claire Cahill and Michelle Long will meet with Taoiseach Leo Varadkar and Health Minister Stephen Donnelly this afternoon to discuss their concerns and to ensure that responsibility “for this particular national scandal” is taken by Government. 

The groups are also calling for an independent taskforce to be established separate from the Department of Health and the HSE to take over the management of spinal surgical lists and complex surgical care for children with spina bifida, hydrocephalus and scoliosis “as a matter of priority”.

Speaking at a press conference this afternoon, the groups said they had lost all confidence in the HSE, CHI and the Minister for Health to be able to manage or achieve a resolution of this “emergency healthcare catastrophe”.

“Our children languish on waiting lists and deteriorate to the point that they become at risk to highly complex and dangerous procedures, complications and poor outcomes as a direct result of the length of time they waited for intervention. In other cases like my son there is simply no intervention at all,” Coughlan-Santry said.

In no other State in the EU would that be deemed to be in any way acceptable practice and nor should it be acceptable within Ireland.

“The Government has failed to adequately address this situation, despite our consistent calls for support and engagement.”

They added that they believe responsibility for this failure lay with the HSE and the Minister for Health.

HSE review

The HSE review, which was announced last week, is to be led by Liverpool-based consultant orthopaedic surgeon Selvadurai Nayagam.

Long told The Journal that the terms of the review must be redrafted with all parties involved in order for them to have any involvement in it. 

“We need to start again, because what’s in it is to review the Temple Street review. That’s no longer in any way adequate and we need that written down,” she said.

“There’s no point in telling us that the reviewer can, if he likes, extend the scope. The decision shouldn’t be with the reviewer, or with the HSE. It needs to lie with the patients and families with an equal voice in it.”

She said she believed the issues raised were “too big” for one person to examine.

“The timeframe suggested of a year is completely unacceptable to families. [The children] haven’t a year to wait for a report,” she said.

“We need a taskforce that’s a much wider group to look at all the issues: medical, governance, management, and of course, the horrific incident of metal parts that are not medical being put into children, and how the management of a hospital either knew and stood back or didn’t know and therefore, are not in control of their own organisation.”

Coughlan-Santry told The Journal it was essential that any review would not only be led by someone from outside Ireland, to ensure impartiality, but would also incorporate specific expertise on spina bifida.

Cahill said any review also needs to examine whether other medical grade products were being used correctly.

“I think it’s really important to state that all of our children as such have metal implants and devices inside their bodies and there has to be standards,” she said.

“We need to know even for EU-regulated products, that the instructions for use are being followed on them and that’s a really important point. When we see such huge grave oversights, we worry for our own children.”

Crumlin review

It comes after a review into spinal surgeries at Crumlin hospital was published. Crumlin is part of the Children’s Health Ireland group along with Temple Street.

The Journal learned earlier this week that this review had been undertaken but had not been published by CHI. 

The review included all patients with spina bifida and scoliosis who had spinal surgery at the hospital between 1 January 2020 and 31 December 2022.

It found that 96 surgeries were carried out on spina bifida patients, 79 of which were spinal surgeries involving 13 patients. 

It found that the majority of patients who underwent spinal surgery at the hospital suffered post-operative complications.

Of those, six had postoperative infections, two had urinary tract infections, one had a significant nutritional deficit, one had a leak of fluid from the spinal cord and one had a significant psychological distress. 

“Wound infection was the only significant complication in this cohort. This fell within published rates for Spina Bifida spinal surgery. This has informed recent changes to wound management,” the review states. 

None of the patients had metal work failure following their procedure in this time period or needed replacement of metal work during the review period.

There were 42 emergency surgeries performed, four of which were unplanned. 

Four of the 11 children returned to the operating theatre between one and nine times, while two returned between 10 and 20 times.

The average length of time that patients remained in hospital after their operation was 25 days. Six children remained in hospital for fewer than 14 days, while two were in hospital for between 14 and 25 days. One child remained in hospital for 151 days.