Scoliosis waiting lists ‘an exercise in manipulation’

The father of a girl with medical conditions so complex that she can only express her pain through tears said the Government’s scoliosis action plan is an abject failure.

So desperate are Aaron Daly and his wife Joan to access treatment for 12-year-old Sophia McGuinness that Joan drove to Crumlin Children’s Hospital on Monday with pictures of her daughter, hoping the sight of her frail frame would galvanise the hospital into action.

“In the end, it was the secretary she met,” said Aaron. “She gave her letters for the head of operational services and the head of clinical services.

“We heard nothing back.”

Sophia has cerebral palsy, arthrogryposis (limited movement of joints), and scoliosis. She cannot speak, only communicating with her eyes.

Aaron said Sophia is one of more than 50 children with scoliosis who do not even feature on the scoliosis waiting lists because they have had their surgery suspended.

He said the waiting lists are “an exercise in manipulation” and deliberately fail to capture the reality for many families dealing with scoliosis.

He said that, as health minister, Leo Varadkar had promised to prioritise scoliosis. His successor, Simon Harris, had too, “and they have failed”.

Simon Harris said in May 2017 that no child would wait longer than four months for surgery and that has not happened,” said Aaron.

Sinn Féin health spokeswoman Louise O’Reilly said she visited Sophia on Monday and that her suffering was heartbreaking.

“It’s the hardest case I have ever seen,” she said.

The Dalys were under the impression that a multidisciplinary team meeting was to take place last Monday to discuss Sophia’s case.

However, no meeting took place and Aaron said no plan can be put in place for Sophia’s treatment until the anaesthetist, surgeon, and respiratory physician meet.

They need to get those three people in a room,” he said.

Aaron said her next out-patient appointment is October 4.

“So nobody has come up with a plan and we can’t even get her reviewed. She hasn’t been reviewed since May. No one calls us to tell us anything. That’s why my wife drove to the hospital.”

Sophia had her first surgery for scoliosis in March 2015, after a 16-month wait post-diagnosis. At that point the curvature in her spine exceeded 100 degrees and her weight had dropped to nearly 10kg.

She recovered reasonably well but in November 2016, her pain levels started to increase.

By the following May, with the screws in her back loosening, it was recognised that she had grown and new spinal fusion surgery was required.

Aaron said they were told four months was the target to carry out surgery but realistically, it would probably be the end of 2017.

Sophia is still waiting, even though her medical notes recorded increased pain last October. In December it was noted that her condition was deteriorating.

Last May, it was noted that Sophia needed urgent surgery to replace the instrumentation in her back. In June, she had a pre-op work-up and the Dalys were hopeful of surgery in August.

However, in early August , they received a letter saying she was being suspended from the waiting list as she was not clinically fit for surgery due to respiratory problems. She had been added to that urgent waiting list on April 11, 2017.

Figures from the Children’s Hospital Group show that as of August 24 last, there were 152 children waiting for scoliosis-related surgery.