Loss of long COVID supports means patients want to fill gaps in care

Denise Morneau has been dealing with lingering symptoms of Long COVID for almost two years.  (Katerina Georgieva/CBC - photo credit)

Denise Morneau has been dealing with lingering symptoms of Long COVID for almost two years. (Katerina Georgieva/CBC – photo credit)

As of Tuesday, it’s been two years since Denise Morneau found out she has COVID-19, but she’s still waiting for some of the symptoms to subside.

She says she hasn’t regained her sense of smell and taste, has sporadic headaches accompanied by a feeling of pressure in her head, and sometimes has trouble with her balance.

“If I really really listen to my body, I would just stay indoors and not go anywhere and not walk and not cook like I do now,” she said.

Morneau regularly participated in Hôtel-Dieu Grace Healthcare’s COVID recovery program, which included consultations with occupational and physical therapists and a support group led by a social worker.

In July 2022, that program was shut down due to a lack of funding, and Morneau said many people had nowhere to turn to for support.

“All sorts of great things came out of it. And so many people have been open and honest about how they’re feeling,” she said of the support group.

“The government kind of worked it all out, and now we’re stuck.”

Darrin DiCarlo/CBC

Darrin DiCarlo/CBC

Janice Dawson, vice president of restorative care and chief nursing executive at Hôtel-Dieu Grace Healthcare, said the program received no additional funding — “all resources came either from existing resources or from additional resources that we added.”

“We were in a situation where we just couldn’t keep the clinic running the way it’s currently running with the resources we had,” she said.

“In short, we still offer some services to people who are suffering from ongoing symptoms as a result of a COVID diagnosis, but things are looking a little different.”

Morneau said she and another member of the support group have held biweekly meetings at a Tim Hortons, and five to seven people attend those meetings, but that’s half the number when the program was running.

She also said there is a difference now that 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 course and start talking about something else,” she said.

It’s so hard to describe how that heaviness can come across and because people look at me and say, ‘Well you look great.’ – Denise Morneau

dr Kieran Quinn, a clinical scientist working at the University of Toronto’s Sinai Health System, a veteran COVID researcher and clinician who cares for people with long-term COVID, said the loss of the program speaks to problems with the health care system as a whole.

“It’s more of worrying news that there are inequalities in our system,” he said.

“And a lot of that has to do with the kind of resources that different places need to be able to support those clinics or avenues of care or whatever they’re trying to do to help their local populations.”

Dawson admitted that getting rid of the program was difficult, but the money wasn’t there.

“Just hearing some of the stories of the people who have gone through our clinic and how much they have benefited, like I said before, it was a really difficult decision to move away from the model we had.”



“Long COVID is a real thing”

Morneau said one of the difficult parts of dealing with long COVID is the fact that from the outside she appears to be fine.

“It’s so hard to describe how that heaviness can come across and because people look at me and say, ‘Well, you look great,'” she said.

“So it’s hard to believe that some of these things are going on, and it’s the same with all the people that meet in our group.”

Quinn said this is a common problem he’s heard from patients dealing with long-term COVID.

“The first, and probably most important, is simply an acknowledgment and acknowledgment from society, and from us as healthcare providers, that COVID has long been a real thing,” he said.

“That people who suffer from it have a real condition and their experiences and suffering are real, even if the tests we have are mostly reassuringly normal, you know, in a good sense, that doesn’t deny the fact that her condition is not normal.”

Quinn said more research needs to be done on treating long-lived COVID before people can start seeing improvements in their symptoms.

In an email, the Canadian Mental Health Association in Windsor said it is not offering long COVID services.

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

And the Health Ministry said a number of hospitals have set up outpatient rehabilitation programs for people with long COVID.

“Hospitals have the flexibility to determine how to allocate their global budgets to operational and service needs, including providing care for individuals living with post-COVID-19 disease (PCC) and/or operating a post-COVID-19 Clinic,” it said in an email.


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