Surgical complications at Temple Street are a symptom of a "much bigger overarching problem when it comes to disabled children," an independent senator has said.
Yesterday, Children’s Health Ireland (CHI) appeared before the Oireachtas Health Committee to discuss the recent scandal surrounding spinal surgeries in Temple Street Hospital.
CHI Chief Executive Eilish Hardiman told the committee that she can't remember having conversations with consultants about using non-approved springs in spinal surgeries.
On Newstalk Breakfast this morning, Senator Tom Clonan – whose son had spinal surgery at Temple Street – said the use of unauthorised medical devices is symptomatic of a larger issue for disabled people in Ireland.
"This is the story for disabled children and young adults across Ireland – delays to therapies, absence of therapies, delays to surgical interventions that lead to suboptimal and life-limiting, life-altering consequences," he said.
"The really strange surgical complications arising directly from missing the developmental window and the therapeutic window for surgery makes Temple Street and Ireland an outlier in European terms.
"I was just wondering what steps they had taken to notify the international medical community ... to try and basically blow the whistle on this really appalling scenario for the families."
Mr Clonan said families of children at Temple Street were informed late the night before that CHI was to appear before the Committee.
"We as a family have been in this space," he said.
Mr Clonan said his able-bodied children have had a "very different experience" in accessing health care than his son with a disability.
"I've got four adult kids, essentially, and for my able-bodied children, their pathways to health care – like the rest of the population – can be a little bit problematic from time to time," he said.
"They have a very different experience in terms of pathways to care, interventions and assistance.
"If unfortunately, [an able-bodied person] experienced chest pain ... you would have stents put in the following week.
"When it comes to disabled children and disabled people, they are allowed to suffer for years and years."
Mr Clonan – who is not a member of the Oireachtas Health Committee – said he attended to ask questions on behalf of other families.
"The family's voices were absented and edited from the Boston report, and from the independent inquiries," he said.
Mr Clonan said there are currently "hundreds and hundreds" of disabled children on waiting lists in Temple Street.
"It doesn't happen in other European Union jurisdictions," he said.
"In Great Ormond Street, where the chief medical officer came from, they operate on children within the therapeutic window.
"It would be considered a grave risk and it would be put on the risk register if a child in the UK or France or Germany was left on a waiting list for a couple of years.
"We're the only country in the European Union where there is no legal obligation on the state to treat or provide therapies or interventions for disabled children and adults."
Among the families in the public gallery yesterday, was a woman whose daughter is now inoperable, Mr Clonan said.
"How would you feel if you were told your child is now inoperable – not because it's a condition that can't be treated – but because we just left her on a waiting list to the point where she deteriorated?" he said.
"That was our experience as a family."