For the family of 12-year-old Melyane Lanoux, waiting for surgery to clear up the effects of a rare bone disorder has resulted in frustration piled up on top of disappointment.
Melyane has multiple hereditary exostosis, an “orphan disease” that causes excess bone growth. There is no treatment, except to surgically trim the growth when it becomes painful and affects mobility.
“It’s very unpredictable. You can have a normal life, then it deteriorates very quickly,” said Melyane’s mother, Audrey Lanoux. “She was fine, then not fine anymore.”
Melyane has not needed surgery in the past. In January, she started to have more pain and began to find it difficult to bend her left knee.
In February, following a trip to the emergency department at CHEO, Melyane was referred to a surgeon. There was a pre-operation appointment on April 26 and surgery was scheduled for May 4. Lanoux cleared her schedule and made complicated arrangements for the care of two younger children.
“After two hours spent in the surgery ward, my daughter had a surgery gown and numbing cream on, and 30 minutes before the surgery time, we were told to go home,” said Lanoux.
The surgery was cancelled because of staff shortages due to COVID, she was told. “We departed calmly, although my daughter was obviously upset. We were told that she was on the top of the priority list and that we would be contacted and that the surgery may happen very soon.”
They are not alone. With a provincial election underway, there have been calls for an infusion of cash and new ideas to clear a surgical backlog exacerbated by the pandemic.
“People are going to be increasingly frustrated. People are coming into the emergency room sicker,” said Dr. Rose Zacharias, a family physician and the president of the OMA.
Last week, the provincial Liberals said they would dedicate $1 billion over two years towards clearing the surgical backlogs, aiming for wait times to return to pre-pandemic levels by the end of this year. The NDP said it would spend $1.38 billion to clear the backlog in two years. In last month’s budget, the Progressive Conservatives announced $300 million for a “surgical recovery strategy” in 2022-23.
According to OMA figures, wait times for common surgical procedures in the Ottawa area have exceeded provincially recommended wait times. Meanwhile, The Ottawa area needs 158 more physicians, according to HealthForceOntario, which posts medical job openings.
Between 42 and 74 per cent of people in the Ottawa area waited longer for knee surgery and 83 per cent waited longer for hip surgery compared to provincial guidelines, depending on where the procedure was performed and how urgently it was needed, according to OMA. The provincial guidelines recommend knee and hip surgeries be performed within 42 to 182 days from the time of the decision to perform surgery, depending on urgency.
About 32 per cent of Ontario patients waited longer for cataract surgery than the recommended 42 to 182 days. In the Ottawa area, between 24 and 49 per cent of patients waited longer, depending on location.
About eight per cent of Ontario patients waited longer than the recommended 14 to 90 days for heart bypass surgery. In the Ottawa area, 24 per cent of patients waited longer, according to the OMA figures.
About 63 per cent of Ontario patients waited longer than the recommended two to 28 days for an MRI. In the Ottawa area, longer-than-recommended wait times ranged from 52 to 95 per cent.
Catching up on the backlog is one of the points in OMA’s five-point plan to improve health care. One way to help reduce the pandemic surgical backlog is to deliver more services in specialty settings outside hospitals, said Zacharias. These would provide hospital-based, publicly-funded specialized skills in areas such as cataract surgery and diagnostic imaging.
“With technology advancements, this is a reasonable, achievable goal,” she said. “It would require an investment, but it’s doable. We have to think outside the box because what we’re doing isn’t working.”
A spokesperson for CHEO said the last thing the hospital wants to do is cancel an operation or procedure.
“When it comes to kids’ health and well-being, we know everyday matters and every delay has a cost,” they said.
Lanoux believes the delays and glitches for Melyane’s can’t all be attributed to COVID-19.
On Tuesday, Melyane was rescheduled for surgery on June 3. Lanoux is hoping that this time it will happen. There has been the frustration of not being able to give her daughter the medication she needed when she was in pain. The delays have affected Melyane in many ways. She can’t cycle to school. She needs help dressing and putting on her shoes.
“I’m hoping,” said Lanoux. “But at the back of my mind, I think it won’t happen.”