Three-month-old Leah Raby was born with a medical condition that causes swelling of one or both of her kidneys due to urine not draining properly.
Hydronephrosis in newborns requires monitoring by medical professionals. But, like tens of thousands of Ontario residents, baby Leah has no family doctor to oversee her care.
This week, her parents will take her to CHEO for a scan. The children’s hospital will follow up on the results, as needed. But, without a family doctor to send her medical records to, the results will simply go to her increasingly frustrated parents.
“We are going to have to keep track of all these things,” says her father, Mark Raby.
“There is no professional person that is watching our daughter. It is mind-blowing.”
The family’s inability to find a doctor is not for lack of trying.
Raby, a 37-year-old teacher, spends almost every lunch hour on the phone, calling doctors’ offices in an attempt to find one who will take on his family, or at least put them on a waiting list. By early this week, he had tried 25 different doctors’ offices and not one could offer even a spot on a waiting list.
He has put his family members’ names on Ontario’s Health Care Connect list, which is designed to refer patients without a physician to a family health care provider who is taking on new patients. Raby said he has been told the wait could be three or four years.
He has contacted Ottawa Public Health and CHEO in a desperate plea for help.
“I realize we’re in unprecedented times and I realize hundreds of thousands of families have the same or similar stories as ours — but I am just writing to ask what we can do? Surely the answer isn’t do nothing,” he wrote to CHEO.
Raby has even sent a letter to the prime minister.
“I just don’t know who to turn to or who to try. I have been trying for months.”
He said he and his wife, Claire, were not aware that their daughter should be immunized at two months until a relative who also has a young baby mentioned it. They took Leah to a walk-in clinic, where they waited five hours for her routine infant vaccines. Raby expects they will do the same thing for the next round when she turns four months old, next month.
The family recently moved to Ottawa. Raby still has a family doctor in Brockville, an hour and a half away, which he is hesitant to give up, given the situation. But neither his daughter nor his wife has a family doctor.
“We are not trying to skip a line. We are just trying to get into a line, trying to get on to a waiting list somewhere,” he said.
The Raby family’s predicament is causing them anxiety, and there are growing numbers of families like them across the province and the country. The situation is creating a broader concern about the state of the population’s health and the health system generally.
As of March 2020, 1.8 million Ontario residents did not have a primary care physician or a family doctor, said Ottawa family physician and researcher Dr. Kamila Premji, who is a member of the provincial Primary Care Advisory Committee.
There were signs prior to the pandemic that the primary caregiver shortage was going to worsen. Many family physicians were nearing retirement age and fewer medical residents were choosing family medicine. The pandemic hastened many retirements, creating backlogs in care, worsening patient conditions and exacerbating an already severe shortage.
Recent research from INSPIRE (Innovations Strengthening Primary Health Care Through Research) found that one out of five Ontario residents could be without a primary health provider within three years.
The critical shortage comes just as primary care is needed more than ever to help rebuild the health system after the pandemic.
In a final report, released this week, Ontario’s now-disbanded COVID-19 Science Advisory Table said the province needs more primary-care practitioners to meet growing need and they should be better integrated into the health system.
“Primary care is a crucial component of pandemic and health emergency preparedness, response and recovery. It is also essential to continued health system improvement, person-centred care in communities and optimal population health for Ontarians,” wrote the science table, adding: “Urgent efforts are needed to address the factors that limit primary care provision.”
These include ensuring training, support and retention of interdisciplinary health teams to provide care to patients.
Ottawa’s Premji, who was one of the authors of the science table briefs on primary care, said of those medical residents choosing family medicine, fewer are practicing comprehensive family medicine, which she describes as the “cradle to grave” primary care that is associated with better outcomes for patients and lower costs for the health system.
Among issues making it less attractive is that up to half of primary caregivers say they are now spending between 10 and 19 hours a week on administrative tasks.
Meanwhile, there are few interdisciplinary teams available for physicians to join. Premji said additional funding is needed to support more interdisciplinary teams as part of improving retention and attracting more physicians to primary care.
“I think there is a misperception that the team-based model of care is too expensive or not effective,” said Premji, adding that data disputes that notion and that both patients and health-care professions like the model.
Meanwhile, what is expected to be a severe viral season has already arrived in Ontario, COVID-19 cases are increasing — with new variants on the horizon — and many patients have worsening conditions after delaying treatment during the pandemic.
Premji said she worries the ongoing acute care pressure will defer desperately needed action to improve and expand primary care — leaving more people without a primary caregiver.
“I really have a lot of empathy for those families.”
Mark Raby, meanwhile, who continues to search for a physician to care for his young daughter and his family, finds it hard to believe this is the reality in Ontario.
“We are at our wits’ end.”
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