Systemic factors contributing to erosion of trust in health care
| Factor | Representative quotations |
|---|---|
| Wait times for primary care physicians, specialists and diagnostic tests | “Two and a half hours [on hold on the phone] … when you’re not feeling well, and you can’t even get through to your doctor. You’re better off to go down and make the appointment.” (F7) |
| Lack of access to primary care physician | “The first year [of having post-COVID-19 symptoms], there was no help whatsoever. Cause my family doctor moved away a few months after I was sick.” (F5) “I no longer got a yearly check-up. I no longer got regular blood work. I felt like I was no longer being cared for.” (F4) |
| Living in a rural area | “I’ve had no contact with doctors except 1 time, and this was probably going on maybe 9 months ago now, pushing a year … . We don’t have the best service here because it’s a small town.” (F9) |
| Need for patient-centred care | “You need somebody who is familiar with dysautonomias or nervous system disorders, who looks at the body as a whole and not just go, ‘Okay, you have a heart problem, go to a cardiologist. You have a headache, go to a neurologist,’ right? They’re just looking at it from a 1 system perspective, they’re not looking at it from your whole body and no one’s talking to each other.” (F1) |
| Coordinating appointments with multiple health care providers | “I have, like, 10 different areas of the city I have to randomly go to and find.” (F5) |
| Difficulty accessing services | “He just kept deteriorating and the doctor said call 9-1-1. Called 9-1-1, they said we’ll be there, and then 5 minutes later they called back and said, ‘We’d prefer not to take him, it sounds like he has COVID, and we don’t want to expose our paramedics to COVID. Can you take him to the hospital?’” (F6) “It’s just so hard to get anything here. It’s all cost cutting. You’re not dying, they’re not gonna do it.” (F4) |
| Inadequate communication between providers | “When I first saw my family doctor, I had asked her, ‘Did you get the report of what happened in the hospital?’ And the doctors don’t even get a report.” (F2) “What I’ve seen in all of it, after seeing an ENT, a dermatologist, an allergist, a neurologist, a hematologist, none of them are connected. They don’t have any communication.” (F4) |
| Inadequate standard of care in hospital | “Once I left the ICU … you just kind of got thrown in a room and you never saw anybody. I never saw anybody to come up to assess my oxygen. I never saw physio come, I never saw anybody come up there.” (F2) “They left me in isolation — because I had a mild sore throat at the same time. They left me in isolation for 4 hours. Wouldn’t let my husband in with me. No one checked on me. And my blood pressure was super elevated. So, the standard of care is nonexistent, really.” (F4) |
| Lack of follow-up | “It’s like when you get let out of the hospital, you’re just let out to the wolves. And you sit at home and you’re like okay, the first month, I know I’m ill, I know I was really ill, you gotta get better. But now what? What do you do to recover? Who do you talk to? Who’s gonna help you?” (F2) “Nobody’s phoned up, nobody’s ever followed up with me. But again, I’ve never followed up with anybody either. So, it’s kind of, they give you the start and then they kind of just vanish.” (F1) “When I contacted my family doctor and said ‘Hey, things aren’t going away’ and he said, ‘Yep, you probably have long COVID.’ And that was it.” (F2) |
| Lack of access to long COVID interdisciplinary clinics | “There is a long COVID clinic in Toronto, but first of all I can’t drive that kind of distance now, and … their wait-list is literally 2 and a half years. So what good is that going to do for me?” (F6) “I feel like there needs to be COVID recovery specialists.” (F2) “Something along the lines of the multidisciplinary assessment. Where you can get a neurologist in the room and the physiotherapist in the room. Get everybody in 1 room. I talked to my family doctor, well then she’s gotta send a letter to the neuro. It’s like okay, can’t we all talk at 1 time in the room? I would like to have a few experts at a table at a time.” (F3) “A 1-stop shop probably would be the best way to do it is have a COVID long haul assessment clinic where you have a respirologist, maybe a cardiologist, a rheumatologist.” (F5) |
Note: ENT = ear, nose and throat specialist, ICU = intensive care unit.