Children's Health Ireland reps to face Oireachtas committee over spinal surgery controversy

Social Democrats TD Catherine Murphy said it is not surprising that families have lost confidence "because they’ve been given repeated guarantees and those guarantees didn’t stand up". 

Representatives from Children's Health Ireland are to appear before the Oireachtas Health Committee on Thursday to answer questions about the controversy around spinal surgery at Temple Street hospital.

The hearing is addition to the committee's usual meeting on Wednesday.

This follows a week of controversy over revelations in reports published by CHI this week and a commitment by the HSE to run an external review into problems identified with complex spinal surgery for children with spina bifida.

Advocacy groups representing young patients' families have said they may not support a HSE review into failings in spinal care at the Children’s Health Ireland (CHI) site.

This afternoon the advocacy groups responded to HSE chief executive Bernard Gloster’s offer to meet them, by reiterating their hope to meet the Taoiseach instead.

In a statement shared on social media and addressed to Mr Gloster, they said they “stand firm” in their intention to boycott the proposed review unless the terms of reference are widened.

“We call for an independent investigation, that ensures transparency, expediated justice and comprehensive terms of reference for all involved,” the groups said.

They said they await communication from Taoiseach Leo Varadkar to meet with them as requested on Friday to discuss the proposed review.

Social Democrats TD Catherine Murphy said it is not surprising that families have lost confidence "because they’ve been given repeated guarantees and those guarantees didn’t stand up". 

The advocacy groups said parents of some children whose files were examined through an earlier review commissioned by CHI were not aware this was happening.

Ms Murphy told RTÉ radio this was a "failing" adding: “It all undermines trust and it is quite a paternalistic approach, taking to ‘we know what is best’ from the medics, when in fact very often parents are watching the deterioration (of their child).” 

James Browne, Minister of State for Law Reform at the Department of Justice, said his adult sister has spina bifida.

“My own sister has Spina Bifida Hydrocephalus and there was a time when she was very young, she was four or five years of age, she could walk 100m with the aid of callipers, but on her own,” he said.

And she faced serious deterioration to the point when she was eight or nine, she was in a wheelchair and couldn’t even stand.

He was not suggesting any negligence around this, but recalled clearly the communication obstacles facing his mother.

“What was very clear, and my mother would still talk about it, is the complete lack of information, not knowing and not being listened to in terms of seeking advice or getting answers to questions,” he said.

“Mum would always say she was very much dismissed anytime she raised any issues. I think there is still a lot of that going on, and the parents are the people who need to be listened to here.” 

He said affected parents need to be involved in creating the terms of reference for any review.