A mother, whose teenage son is on a waiting list for spinal surgery at Children's Health Ireland, has said it is "unbelievable" that he is left in constant pain.
Louise Collins, from Tralee in Co Kerry, said 14-year-old Daniel has deteriorated rapidly and that due to the extreme curvature of his spine, his hip and ribs are rubbing off each other, leaving him in constant pain and unable to use his wheelchair.
She said Daniel had limited mobility before deteriorating further and she said "to take that away from a child is just unbelievable".
The teenager has spina bifida, epilepsy and autism and was diagnosed with requiring spinal surgery in July 2023.
His mother Louise said clinicians at Children's Health Ireland acknowledged Daniel was in pain last February and again in August when his case was noted as "urgent".
Today, CHI reported its waiting list figures, which said there are a total of 228 children on the list. This includes 137 children who are described as "actively waiting" for their surgeries.
"We don't know where Daniel is, we imagine he is in the planned (list) but we have had no definite date."
She said Daniel is ready for surgery, that he has had his pre-operation assessments but she is concerned about not having a date in place.
"It is terrifying there are dates given to 20 children (on the list) and we weren't given a date so that's at least 20 children before Daniel. So how long more is he going to be waiting?"
She said her son's needs are now far more complex than when he was first assessed by the spinal surgery team at Children's Health Ireland.
"They are saying these are complex kids, Daniel is a lot more complex now than he was a year ago."
Louise is not confident the waiting lists will be cleared anytime soon, and said the news of a new consultant spinal surgeon being recruited to start in the summer means "more months".
She said there is only one way to put it - "they are torturing children, by leaving them on waiting lists".
'We've been waiting year'
Lorraine Russell, whose 6-year-old daughter Zoey is waiting for spinal surgery, said she has "lost faith" in Children’s Health Ireland and is calling for immediate action to reduce waiting lists.
Mr Russell, from Rathnew Co Wicklow, said Zoey was due to receive treatment in New York, but her condition has deteriorated to such an extent she is no longer fit to fly.
Zoey Russell has spina bifida and a number of other conditions.
According to her mother Lorraine, her spine is curved in a way that means she "grows forward", resulting in pressure being put on her lungs and other organs.
Zoey was among dozens of children who were offered the possibility of receiving spinal surgery abroad.
Last year, the Government reached international outsourcing agreements with hospitals in the UK and US, in a bid to tackle spinal surgery waiting lists for children.
Speaking to RTÉ’s Drivetime, Ms Russell said the option of surgery in New York filled their family with hope, but it was "gut-wrenching" when they were informed in December 2024 that Zoey’s poor lung capacity meant she could not fly.
"It’s too late now," she said.
"When we found out that she wasn't going to go to New York, it was hard because we knew we were left back here.
"We knew we'd have to wait back here, and we've been waiting years. You just have no faith," she said.
Ms Russell said her daughter now has an appointment with a consultant in Ireland at the end of May to discuss next steps, but she is "angry" that her daughter did not receive surgery years ago.
"It could have been over and done with, so we could have had better quality of life. She might not be on as many machines. She wouldn't have had as many pressure sores," Ms Russell said.
"She has a bike out the back garden there. She loves going on the bike and she can't go on her bike as much now. And she can only go about 5 minutes on it now, she gets too tired with her lungs.
"If she'd had her surgery a year or two ago when she was supposed to, who knows where she'd been now physically.
"It's so frustrating. I fear for her future. I fear for her because it’s like if you have a disability in this country, you don't matter, you're not seen and you’re not heard.
"For our little girl to have to suffer, it's just not good enough. Anybody that meets Zoey, she steals their heart and she deserves a right to life too," Mr Russell said.
Children’s Health Ireland said they do not comment on individual cases.
In a statement in relation to the spinal surgery waiting list report, the Head of the Spinal Surgery Management Unit Mr David Moore said: "We aim to have a new Consultant Spinal Surgeon in post in the summer, who will further bolster our efforts to reduce the waiting list for spinal surgery and the length of time that patients are waiting.
"We look forward to welcoming new members to the team, and recruitment is currently underway for a Clinical Nurse Specialist, an Advanced Nurse Practitioner in Tissue Viability and an Occupational Therapy Specialist."
