‘Urgent should mean urgent’ says Kerry mother with child waiting for spinal surgery

Scoliosis sufferer Liam, 13, is one of several children facing long wait times

Pamela Dennehy with her son Liam at home in Killarney. Liam’s scoliosis became noticeably worse last year, but they were told only on May 3 that he could have surgery on May 30. Picture: Family Supplied

Urgent should mean urgent and not months down the line.

That is the feeling of a Kerry mother whose child is one of a number of children who still face long waiting times for spinal surgery almost nine months since controversy erupted over the issue.

Up to April, 251 children were on waiting lists for spinal surgeries at Children’s Health Ireland (CHI). A similar report for April last year showed 327 children waiting.

This year, up to April, 150 surgeries were carried out between CHI and outsourcing. In April last year, the tally was 140.

Families say waiting times are still far too long.

Liam Dennehy, 13, has been in hospital since early April between University Hospital Kerry (UHK) and CHI at Temple St, where he is now.

His mother Pamela said his scoliosis became noticeably worse last year, but they were told only on May 3 that he could have surgery on May 30.

She was also devastated to hear he may require two surgeries now because his condition has become so severe.

“He can’t drive his chair anymore because he doesn’t have the stability in his body to do it,” said Pamela.

“He was a brilliant driver of his powerchair, brilliant. He could reverse, he was unreal, Now he can’t even drive it because he is so shaky and he doesn’t have the stability in his body.”

He struggles to breathe at times with even his ability to speak affected. He also has GA 1 (glutaric aciduria type 1) which is a rare but serious inherited disorder.

Pamela said that his spine, judged as ‘straight’ in November 2022, showed a 35-degree curve by March last year and 85 degrees by November.

He managed to stay in school until December but has not attended since.

A member of the Scoliosis Advocacy Network, Pamela is acutely aware they are not the only family facing delays.

“I know what every parent or child is going through that is dealing with this and I understand very much there are people that have it with six years, seven years, four years — our situation is our situation and their situation is theirs.

“They shouldn’t be waiting for surgery either, but I can’t do anything about that but only keep this fight up after Liam has his surgery.

And the reason Liam needs his surgery is he can’t go home.”

When Liam was seen by his Crumlin consultant at an outpatients clinic in Ballincollig in late March, the mother of three was advised she needed night nurses to help her, but this never happened.

On April 8, he was admitted to UHK.

The following week she attended a meeting in Crumlin — travelling alone from Killarney at 2.30am to make the 8am slot — to discuss his care.

There, she heard: “[They said] it could be potentially two surgeries now because he is gone past the 85 degrees.”

On April 25, Liam’s UHK paediatrician wrote to Crumlin in concern over Liam’s deteriorating condition.

Then on May 3, Liam was transferred to CHI at Temple St by ambulance.

The surgery date was confirmed this week.

“It may or may not go ahead depending on if they have the ICU bed for it, if an emergency comes in or if something else happens; it’s never going to be definitively that date,” said Pamela.

Many other parents have seen dates “come and go”, she added.

She has raised her case with politicians, including Independent TD Michael Healy Rae and Sinn Féin leader Mary Lou McDonald, because she feels expanded services are the only answer.

“We literally have nowhere to go,” she said, adding that even though Liam has health insurance they were told he is too complex for treatment abroad or private care.

“Urgent is urgent — you don’t ring an ambulance and get told you will have a GP appointment in three weeks’ time.

“He is at risk of picking up an infection every time he is in a hospital.”

Scoliosis Advocacy Network co-founder Claire Cahill said long waits remain common.

“The first thing to note is there are over 4,000 children on an outpatients list for a first appointment in CHI for orthopaedics,” said Ms Cahill.

“That is important because usually 20% of that 4,000 will be spinal.

So before we even get to a point where surgery is indicated, children accessing timely first appointments is the first step.”

She said surgery is the final step and commitments to ending those waiting lists must be supported by overall changes.

She pointed to a scathing report by the Ombudsman for Children last June on scoliosis care for ‘Ivy’ who waited five years for surgery.

The report made seven recommendations.

“I would question how have things changed, because on the ground change is not visible for patients, they are not feeling the impact of those recommendation being acted on.”

David Moore, lead for a new paediatric spinal surgery management unit set up in CHI as part of the response to the crisis, told the Irish Examiner: “Our facilities are pretty much at capacity.”

He said they are also looking at “all sorts of out-sourcing options”.

He could not comment directly on Liam’s case as doctors and hospitals are precluded from commenting on patient details.

It is CHI policy to treat children firstly on the basis of clinical priority and secondly on the basis of length of wait.

Dr Moore also said a visiting surgeon saw 12 children in a one-day clinic following requests from parents for a second opinion on their child’s condition.

Some of these children were previously patients at the centre of a controversy over ‘spring’ implants.

Taskforce

A taskforce set up to bring improvements to scoliosis care for children is "a talk shop and a distraction" before the general election, the Scoliosis Advocacy Network has said.

The Paediatric Spinal Taskforce held its first meeting this month, which included the HSE, Children’s Health Ireland, the Department of Health, and some patient advocates.

However, the Scoliosis Advocacy Network has not accepted an invitation nor have two other groups, including spina bifida families, network co-founder Claire Cahill said.

“We need action, not another talk shop,” said Ms Cahill.

“The rebranding of the previous scoliosis co-design board as a taskforce will not bring about the immediate improvements needed for our children.

It is a buffer, a talk shop, a distraction before the general election." 

She said everyone knows what needs to happen, including outsourcing and bringing surgeons from abroad.

“We are still waiting. How can this be justified when we see children suffering so greatly waiting for surgery."

Ms Cahill said they have been part of the co-design process “for many years” and cannot support the taskforce as it “lacks any real power”.

"To be effective, a taskforce must have an independent healthcare expert as chair, not a lawyer without healthcare experience. 

"This chair must have health system expertise, experience, and essential executive power, with the taskforce having statutory authority to implement its decisions." 

Taoiseach Simon Harris, who as then health minister, pledged in 2017 maximum wait times of four months for scoliosis surgery, has committed to meeting them. "This must happen without delay,” Ms Cahill said.