'The children of Ireland deserve better': Frustrated parents go abroad to secure scoliosis treatment
Dan and Paulina Nickstrom with their son Daithí in Finland. Despite being told that Daithi was being put on the 'urgent list', it was eight months before they first met a consultant in Crumlin.
In mid-July 2016, construction machinery for a new children’s hospital arrived, amid much fanfare, at a building site in Dublin. Parents of children with scoliosis hoped it was the beginning of the end of waiting lists.
Seven years later, as pressure builds in overcrowded hospitals, some frustrated parents have taken matters into their own hands by using connections to European public health systems to have their children treated.
Little Daithi Nickstrom was born in Mullingar, but had spinal fusion surgery for congenital scoliosis in his mother’s homeland of Finland last year.
His parents, Dan and Paulina, were told by a midwife during their pregnancy of a possible health condition.
“We were thinking it was probably scoliosis, but we were not sure until he had an X-ray," said Dan.
The results were sent to the children's hospital in Crumlin.
“Weeks and weeks went by, nothing, then it turns out it was lost in the post,” said Dan. “It had to be sent again.”
Five months later, a consultant’s secretary phoned to say Daithi was being put on the "urgent list".
But it was eight months later when they first met a consultant in Crumlin, by which time they had already been to Finland and Daithi had received care and further X-rays.
“On account of us not being resident in Finland then, we had to make a private appointment, but we were seen and they referred us straight to the public system.”
For a short period, they were listed in both the Irish and Finnish systems until waiting lists here, and other personal reasons, made them reassess their living arrangements.
Dan recalled waiting for three hours in Crumlin after arriving for a scheduled appointment, trying to entertain Daithi in a crowded hallway.
“It’s busy,” he said.
“The surgeon comes in and they are doing amazing work in a system that is not fit for purpose.
"You could tell by him that he was flat to the mat, he was a very nice guy and you could tell he was trying to get through his list.”
In the Helsinki New Children's Hospital, X-ray appointments were typically followed 15 minutes later by a meeting with the consultant, he said.
“It’s a lovely new hospital, and I was literally in and out in half an hour and it all just worked like clockwork,” he said.
"I was doing some analysis, it’s less than half the size of Dublin’s children's hospital but it’s around one-13th of the price, and it opened on time.
"Then last year, they opened another children’s hospital in their second city, Turku.”
The family moved to Finland in mid-2021. Daithi’s surgery was in August 2022, without the cancellations that are typical of Ireland's public health system.
Dan points to the use of electronic health records as another difference, saying they had precise details of the four-hour surgery on a mobile app before their son was in the recovery room.
“We were lucky enough to have the option to move, and we had other reasons to come over as well,” he said.
And most importantly, he added: “Daithi is great now, he’s perfect, he’s 100%.”
Another couple, from Galway, Christelle and Shane Ward, has a similar story, opting to use connections to Christelle's home in France for their daughter Loanne’s spinal surgery for scoliosis.
“When Loanne was first diagnosed in June 2020, we were told straight away she would need surgery, because it was so advanced already,” said Christelle.
Both Irish and French hospitals initially advised waiting some months as Loanne, now 14, was considered too young for the surgery that she needed.
“So at that stage, we decided to stay in Ireland, but the problem was she was on the waiting list for a follow-up appointment, and then we realised that she had deteriorated much faster than we thought she would,” said Christelle.
“We got an appointment for pre-op in May 2021, but the cyberattack on the health services happened and it got cancelled.”
Within two months, the degree of curvature in Loanne’s spine reached 115 degrees deviation from 64 degrees when first diagnosed.
Even this did not put her at the top of the list, Christelle said, remembering being told: “She could still be waiting six months”.
Around this time, French citizens could return home for medical treatment without restrictions as part of covid measures.
“Loanne is both Irish and French, so we were able to come back to France and be straight away in the medical system,” she said.
Loanne was first treated for five weeks with halo-gravity traction which can help stretch the spine.
This is also offered in Ireland, but the difference in France is that the family knew an operation would quickly follow as they were in an elective centre, without the risk of emergency admissions leading to a cancellation of the procedure.
Ultimately, Shane said: “She had halo on February 2, 2022, and spinal fusion along with thoracoplasty — five ribs broken and reset — in March 2022.”
Now back in Galway after rehabilitation in France, Loanne is swimming and wearing summer dresses with no physical signs of what she has been through, her mother said.
Shane said: “In our experience, the staff in Crumlin were fantastic, and the level of care is very good. But we don't have dedicated theatres so, when you had a date, that was it, you went in and you got sorted, and you knew your place was not going to be taken by an emergency.”
Claire Cahill, co-founder of the Scoliosis Advocacy Network, said children can wait “up to two years” for a first appointment.
“Accessing scoliosis care in Ireland continues to be a challenging and disheartening ordeal, as highlighted in the recent report by the Ombudsman for Children on Ivy's scoliosis treatment,” she said.
She described the waiting list of 319 children currently as “deeply concerning”.
“Despite increased funding and assurances from Stephen Donnelly, minister for health, we have seen fewer completed surgeries year to date compared to 2022,” she said.
An external clinical review began in December around spinal treatment for children with spina bifida, and Ms Cahill would like the same for scoliosis.
“Time is of the essence, and the Government must prioritise the implementation of the ombudsman's recommendations, along with additional measures to address the deep-rooted issues hindering the delivery of timely and accessible scoliosis care,” she urged.
A spokeswoman for Children’s Health Ireland said they acknowledge “there are lengthy waiting times for some orthopaedic surgeries and that this is a difficult time for individual children, young people, and their families who are waiting for treatment".
“We apologise to our patients and their families who are on our waiting lists,” she said. "Direct patient and family contact and communication remain a priority for our staff working with our orthopaedic patients."
The hospital group is taking “every possible measure” to reduce waiting times for scoliosis treatment, she said.
The Scoliosis and Spina Bifida Action Plan saw a 47% increase in activity last year, with 250 spinal fusions performed annually.
This year, 24 designated beds, a second MRI scanner, additional staff across multiple professions, and more theatre capacity will be added, funded through a Government boost of €19m last year.
Sending “suitable patients” for private treatment is also continuing, she said.
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