Loss of long COVID supports has patients looking to fill gaps in care

Tuesday marks two years since Denise Morneau found out she had COVID-19, but she's still waiting for some of the symptoms to subside.

She says she hasn't recovered her sense of smell or taste, gets sporadic headaches that come with a feeling of pressure in her head and has problems with her balance sometimes.

"If I actually really listen to my body, I would just stay in the house and not go anywhere and not go walking and not do any cooking the way I'm doing now," she said.

Morneau was a regular participant at Hôtel-Dieu Grace Healthcare's COVID Recovery Program, which included consultations with occupational and physio therapists and a support group led by a social worker.

In July 2022, that program was scrapped because of a lack of funding and Morneau said that has left many people with nowhere to go for support.

"There were all kinds of great things that came out of that. And so many people were open and honest about how they were feeling," she said, of the support group.

"The government somehow folded all of this and so now we're stuck."

Janice Dawson, vice-president of restorative care and chief nursing executive at Hôtel-Dieu Grace Healthcare, said the program didn't get any extra funding — "all of the resources were from either existing resources or additional resources that we added."

"We were in a situation where we could just no longer sustain the the clinic in the way it was currently being operated with those existing resources," she said.

"In a nutshell, we do still offer some services to folks who are suffering from ongoing symptoms as a result of a COVID diagnosis, but it looks a little bit different."

Morneau said she and another support group member organized meetings at a Tim Hortons once every two weeks and five to seven people are at those gatherings, but that's half the number that attended when the program was running.

She also said there is a difference now, where there is no social worker leading the group.

"She kept us grounded because we're out there having coffee, you know, we can get off track and start talking about something else," she said.

Dr. Kieran Quinn, a clinician scientist working at Sinai Health System at the University of Toronto, an expert long COVID researcher and clinician who provides care to people living with long COVID, said the loss of the program speaks to problems with the health-care system as a whole.

"It's more concerning news that there are inequalities in our system," he said.

"And a lot of that has to do with the type of resources that various places have to be able to support these clinics or care pathways or whatever that they're trying to do to help their local population."

Dawson admitted it was a difficult program to get rid of, but the money wasn't there.

"Just hearing some of the stories of the people who did go through our clinic and how much it benefited, as I said, it was a a really difficult decision to have to kind of shift away from the model that we had in place."

'Long COVID is a real thing'

Morneau said one of the difficult aspects of dealing with long COVID is the fact that from the outside, she looks like she is doing well.

"It's so hard to describe how that heaviness that can come over and because people look at me and say, 'Well, you look great,'" she said.

"So it's hard for anyone to believe that some of these things are going on and it's the same thing with all of the people that meet in our group."

Quinn said this is a common issue he's heard from patients dealing with long COVID.

"The first and probably the most important is simply an acknowledgement and a recognition from society and from us as health-care providers that long COVID is a real thing," he said.

"That people who are suffering with it have a real condition and their experiences and suffering is real, even if the tests that we have are mostly reassuringly normal, you know, in a good news sense, it does not dismiss the fact that their condition is not normal."

Quinn said more research needs to be done into the treatment of long COVID so people can start seeing improvements in their symptoms.

In an email, the Canadian Mental Health Association in Windsor said it doesn't provide long COVID services.

The Windsor-Essex County Health Unit pointed to a list of services in the province and said in an email the College of Family Physicians may also be a good resource.

And the Ministry of Health said a number of hospitals have established outpatient rehab programs for people with long COVID.

"Hospitals have the flexibility to determine how to use their global budgets for operational and service needs, including the provision of care for individuals with Post-COVID-19 Condition (PCC) and/or the operation of a Post-COVID-19 clinic," it said in an email.