Scoliosis Ireland, a national organisation supporting many of those living with the condition, says there “absolutely should be” a public inquiry into the use of unauthorised metal springs during three spinal surgeries on children at Temple Street.
The organisation was speaking out after Taoiseach Micheál Martin ruled out a public inquiry and said the focus must shift away from Children’s Health Ireland (CHI) and onto transferring services to the new national children’s hospital. The group also said that it has requested to meet with new Minister for Health Jennifer Carroll MacNeill on four occasions to raise their concerns, but that requests have so far gone unanswered.
The use of unauthorised metal springs, implanted into a number of children during spinal surgeries was wrong, HIQA said this week in its report on the surgeries, which were carried out by a surgeon at Children’s Health Ireland. Scoliosis, a condition in which a person’s spine is irregularly curved to the side, most commonly occurs during growth spurts experienced in adolescence, although it can develop in adults too.
The curvature of the spine causes pain but can also lead to a number of other health problems and can affect a person’s breathing. In severe cases, the required treatment is spinal surgery.
As the condition can worsen if it goes untreated, the carrying out of these procedures is time sensitive. A report published in December warned that the situation for children needing scoliosis surgery in Ireland is critical, with the Ombudsman for Children highlighting a five-year wait for spinal fusion surgery, leaving one young woman with life-long medical struggles as a result. There are currently more than 200 children waiting for surgeries, whose conditions are getting worse.
Chair of CHI Ireland, Dr Jim Browne, resigned in the wake of the report. He apologised to the “children, young people and families that have been failed by the care they received, following the release of the Hiqa report.”
Speaking on Wednesday in response to questions in the Dáil, Mr Martin opposed calls for more board members of CHI to stand down in the wake of Tuesday’s HIQA report into orthopaedic surgeries, saying that removing the board “would weaken governance even further and could lead to further difficulties and challenges.”
However, as the controversy around the surgeries mounts, Gary Farrell, Head of Scoliosis Ireland, called for the resignation of the entire CHI board.
Describing the HIQA report as “damning” and terrible,” Mr Farrell said the organisation does not have confidence in the current CHI board.
“The HIQA report was unbelievable. Hearing about the three children and the families affected is awful, and we can only imagine how those families are feeling,” Mr Farrell said.
“There’s zero accountability, and we have zero confidence in the current board of CHI. Children can’t go on like this, and neither can parents. We have parents out of their minds with worry, going to newspapers and going on radio programmes pleading for help. It’s unfair and it’s not right. I was talking to a parent in the UK recently, and she was concerned about her child having to wait 14 weeks for surgery. She thought that was outrageous, but contrast that with Ireland, where so many children are waiting three to four years.
“We are calling for a public inquiry. We don’t agree with what the Taoiseach is saying. The issue is in his hands and it’s now under his Government. The Government should be on top of this.”
“There absolutely should be a public inquiry. We’ve called for this for a long time. The Board of Children’s Health Ireland are not doing the jobs they were assigned to do, so we need to strip this down and build it back from the ground up with a new board and a new chair who can actually deal with these issues.”
The spokesman for Scoliosis Ireland also claimed that the organisation has requested to meet with the new Minister for Health repeatedly – but that they have had no response.
“We also have to look at the Government because the Minister for Health and previous Ministers are not working with parents or children or advocates. On four separate occasions, we requested to meet with the current Minister for Health, Jennifer Carroll MacNeill, yet we’ve heard nothing back.”
In 2017, Simon Harris, then serving as Minister for Health, promised that by the end of 2017, there would be no children waiting more than four months for spinal surgery needed to treat scoliosis. However, during a Virgin Media interview last November, Mr Harris accepted that he had failed to deliver on that promise, however said that the number of children waiting more than four months had fallen significantly by the time he left the Department of Health in June 2020. However, since his 2017 promise, neither Mr Harris as Health Minister nor the Government has met the target set that year.
Mr Farell said it is “disgraceful” that so many families feel they have no option but to go to newspapers and publicise their stories in the fight to get surgery. He also highlighted persistently long waiting lists, telling Gript that while it can appear that the number of people on waiting lists is decreasing – as the Government and Simon Harris previously claimed – it can sometimes be the case that spinal surgeons deem it too risky for certain children to undergo surgery as the condition worsens.
“Families shouldn’t have to go to the papers and fight for surgeries in that way. Every child deserves a chance, and it’s up to the Government and CHI to ensure this. The truth is that so far, they have failed terribly.”
Mr Farell explained: “I became a campaigner after being diagnosed with scoliosis at 14 years old. There was no-one in Ireland at the time bringing awareness to the condition, so we set up the organisation in 2010. I’m affected by scoliosis and the pain that goes along with it every day of the week. I know exactly how these young people are feeling. It’s heartbreaking, especially when you are coming into your teenage years and you want to be out with your friends enjoying yourself.”
“As the spinal curvature progresses, it can begin to close in on the heart and lungs. It can be very difficult over time, especially with regards to things like breathing, and without the right treatment, children can be left permanently disabled. Some of the children we see, in their cases we see the waiting lists and the figures going down. However, many people do not realise that some children in this country wait so long for surgery that they become inoperable and are taken off the waiting list.”
“Michael Martin said that since the late 1990s, there has been over half a billion euro spent on public inquiries. That tells us all we need to know about the failures within the Government, and also the failures relating to Children’s Health Ireland in our hospitals,” Mr Farrell added.
‘THINGS ARE ONLY GETTING WORSE’
“People should be held accountable. This scandal has been going on a long time, long before the spring scandal. Anyone who was involved in what has happened should definitely resign, and we are calling for those on the board of CHI to step down. A new board needs to be established.
“Scoliosis Ireland has been campaigning since 2010, and things are only getting worse. Until we put pressure on the Government, things will not happen. There has been a long history of families and campaigners going to the media in Ireland, but we should not have to put children on the covers of national newspapers to try and get them surgery.
“It’s disgraceful, and the Government seems to have learned nothing despite all the coverage around this issue. As a parent myself, I can only imagine having to leave him in hospital and not knowing whether the surgeon is inserting the right springs. After what has emerged, it’s hard to imagine feeling comfortable leaving your child in an Irish hospital to have the surgery.”
It comes as the Ombudsman for Children Dr Niall Muldoon said that children with scoliosis are “being denied their right to the highest attainable standard of health.”
He described the report as “another distressing turn” in the crisis around access to scoliosis surgery, saying that “ultimately, children in Ireland are being failed.”
The Ombudsman said that it is “absolutely essential” that steps are taken now to restore confidence in the system for children and families.