The mother of a child with scoliosis is calling for a full public inquiry into Children's Health Ireland after a report revealed the use of unapproved implantable springs in spinal surgery at Temple Street Children's Hospital.
Co-founder of Scoliosis Advocacy Network Claire Cahill has said the revelations in the report will be a great source of anxiety and fear for parents of children who are awaiting spinal surgery.
Her 15-year-old son Darragh was diagnosed with early onset scoliosis when he was 18 months old and has had several spinal surgeries, but was not one of three children covered by yesterday's report.
"He has been in the system a long time and as a parent, my concerns and fears have been increased after reading yesterday’s report," she said.
She told RTÉ's Morning Ireland that "when you hand your child over to a theatre, to surgeons, to nurses and everyone, and you walk away, you have no control as a parent.
"You are relying on the hospital and that everybody in that system will work to keep your child safe," she added.
"That means following medical device regulation, following all the different types of policies, procedures and best practices in the theatre and ensuring things like infection rates are controlled.
"After reading numerous reports, but particularly Tuesday’s report, it raises huge red flags about the lack of clinical governance," she said.
Read more: 'This will not happen again', says CHI on spinal springs
"It puts parents in a very tricky position because our children need surgery, and unfortunately, we have to fight for that surgery. In my own son's case, he was told his surgery would happen before Easter. We went up on Thursday of last week, to be told there is no date.
"There is no timeframe. That is the reality. On the one hand, you are pushing for a surgery and on the other hand, you are actually quite nervous, because you start to question everything you know," she added.
"Have I been told everything I should know about this? Are things being done right? Is my child safe when I hand him over to his theatre? It adds an extra layer of stress on a family. And I think sometimes even families go into denial about it.
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
"They nearly do not believe that this could happen. What has happened in our Children's Hospital is scandalous and in an era of so much regulation, to think that this could happen, it really puts parents in a very difficult situation," she said.
Ms Cahill says the findings of the report very much reflect her experience of dealing with the hospital on behalf of her son.
"I have always said that dealing with the actual hospital has been so much more stressful than dealing with a diagnosis of scoliosis in my child. It is the fight for treatment. You are told you will be brought in for surgery and it does not happen.
"Families believe their children are listed on a wait list and then they get in contact with the hospital, and they are not listed at all. These are ongoing issues, really basic things that could make a massive change in the way that our children are cared for, and they have been ignored time and time again," she added.
CHI chairperson Dr Jim Browne resigned his position yesterday in the wake of the report published by HIQA.
However, Ms Cahill believes a full public inquiry into the management of CHI must now be undertaken.
"I think it is such a damning report. I think it is just one of many reports, and I believe it should be the beginning. I, as a mother, and as an advocate, would like to see a full public inquiry into CHI and how they have treated children who live with scoliosis," she said.
'The most damning report'
A family solicitor for Luke Ryan, a young boy who had an unapproved spring implanted during spinal surgery, said it is vital the lack of confidence and trust in CHI and the HSE is redeemed quickly.
Families are dependent on the system to serve them properly, Ray Bradley said, adding the report is incredibly damning on many fronts.
"This report, in my experience, is the most damning report that I've seen in terms of culture, lack of governance, lack of management systems, failure to adhere to risk management protocols, failure to adhere to medical device regulations," he said.
Speaking on RTÉ's Morning Ireland, Mr Bradley said the organisation must take its own responsibility for what happened.
He said it must "acknowledge what happened, engage with families concerned, apologise for what occurred and indicate what steps will occur to ensure for those children that they will never experience similar circumstances".
Mr Bradley said the delays children are forced to wait are excessive, adding that some are waiting for several years, despite being certified as requiring surgery.
This makes surgeries more complex and recovery more difficult, he said, adding this is unforgiveable in a country that has the finances to deal with the problem.
He said the Luke's family were shocked to discover that he received a non-medical grade device during surgery.
He added that they learned about the matter in a phone call at 11pm on the night before the controversy became widely known in the media.
