Specialized clinics to treat long COVID are in demand and physicians say they can't keep up

Dr. Neeja Bakshi, an internal medicine physician based in Edmonton, runs a post-COVID clinic out of her private practice to help patients with long COVID.

Since it opened last fall, Bakshi says demand is so high that patients getting referrals now have to wait until November to get their first appointment. She's getting five referrals per day for post-COVID treatment, which is double what her clinic gets for general internal medicine. 

She's also getting referrals from other provinces: B.C., Ontario and Manitoba. 

"It feels great that I'm providing a service that can help so many people," said Bakshi. "But it's also an incredible pressure because I know that I can't see everybody and I know that I'm not going to be able to provide the care that I want if I'm burnt out."

Doctors say demand is growing for specialized clinics to treat post-COVID condition, also known as long COVID, in part due to increased awareness of what symptoms are. While clinics have opened in a number of locations, the wait lists are also growing. With a lack of funding and staffing, physicians say they can't keep up. 

The World Health Organization estimates that at least 10 per cent of people infected with COVID-19 will experience post-COVID condition, which can include a wide range of symptoms from fatigue and shortness of breath to anxiety and difficulty concentrating.

In Canada, nearly 3.9 million people have contracted the virus, putting the estimated number of COVID long-haulers in the country to be around 390,000. 

Dr. Kieran Quinn, a clinician scientist at Sinai Health and the University of Toronto, is leading a large research program looking at health services for people with post-COVID condition. 

Quinn says doctors across the country are starting to see increased volumes of requests for referrals for these specialized clinics.

At the Toronto Rehabilitation Institute, run by the University Health Network in Toronto, wait times have recently jumped from weeks to months, he said. 

"Our colleagues in different provinces are reporting up to six months wait time to get into these clinics and then around the world, the reported wait times in places like Italy, the U.K. and the United States — these clinics are often seven to nine month wait times," Quinn said. 

Lacks funding and physicians

At Bakshi's long-COVID clinic, patients are first tested for acute infections in their organs and then given a quality-of-life assessment. 

"I use that as kind of my starting point to say, where do we want to get to between now and our next visit? And we look at both pharmacotherapy [medication], rehab, allied health, anything that we think that will help this patient," she said. 

The clinic, part of Park Integrative Health, includes massage therapists and dietitians, but Bakshi is the only doctor there who sees long-COVID patients. 

She believes the demand is caused by increasing recognition of what post-COVID symptoms are, by health care providers and patients. 

"One of the things I'm seeing in the majority of my patients is a high heart rate or something called POTS [postural orthostatic tachycardia syndrome]," she said. 

"That's a very clear indication of the physiologic changes happening in patients that have long COVID and so I think there's more and more recognition of this."

Quinn agrees with Bakshi that increased awareness has led to a demand for these specialized clinics, which increases their wait times. But part of the problem, he says, is also a lack of funding and physicians. 

"We need more clinics, we need more places that people can go with these multidisciplinary care teams to support them and those clinics need funding," he said.

Bakshi is developing an informal education guide for family doctors, with hopes that more will take on COVID long-haulers as patients. 

"When we don't have evidence-based treatments yet or we don't have evidence-based management, it can be really daunting to take on a patient population. You don't really have guidance on what to do. You don't really have a rule book," she said. 

Growing need for treatment

Susan Thiele is among many trying to find answers for her condition. She caught COVID-19 in November 2020 and since, her symptoms of extreme fatigue, difficulty breathing, pain and stomach problems never fully went away.

Thiele used to work out, ride her horses and go on walks and hikes with her family, but now, none of those activities are possible without exhaustion.

"Just walking like five feet was exhausting. I could hardly do it," Thiele said, recounting what it was like months after catching the virus. 

"One sip of soup and then I'd have to rest and try to recover and catch my breath again to take another one." 

The Manitoban, who lives in Dauphin, a city that's 300 kilometres northwest of Winnipeg, is a school teacher. She now works three days a week to give herself time to rest and recover. 

"The hardest thing to come to terms with is that your life has been altered," she said through tears. 

"I just want to get part of it back…. If I could have my heart and lungs where I can just go for a normal walk and be okay with family, that would be huge. That's all I want." 

Number of clinics unclear 

It's unclear how many specialized clinics there are in Canada for long COVID, although some estimates put the number at around 20 or so. 

In British Columbia, the province funded five clinics to help long-COVID patients with acute concerns managed by their family doctor or nurse practitioner. As of May 12, the clinic saw 5,885 referrals, according to a statement sent to CBC News. 

A spokesperson said patients are typically seen in-person or virtually within two or three weeks after referral, which is faster than many other specialist referrals in B.C. 

Alberta has funded one clinic in Edmonton and several in Calgary.

In March, Quebec announced it's funding five main clinics and 15 satellite sites dedicated to researching post-COVID condition and Lyme disease. 

'It would be life changing' 

In Manitoba, there are no multidisciplinary, long-COVID clinics — it's something Thiele wishes existed near her home. 

Finding treatment for her symptoms has been difficult. 

"To have somebody else filtering through all that, that has more knowledge than I do and understands the stuff more, it would be huge. It would be life changing," she said.

Thiele's family doctor recommended some tests, so she did an echocardiogram for her heart and a CT (computed tomography) scan of her lungs. 

But both results came back and there was still no recommended treatment for her symptoms, other than simply rest, she said. 

Thiele was also referred to the pulmonary rehabilitation program at Deer Lodge Centre in Winnipeg, but was later denied entry because her lung scan was clear, she said.

"It's disheartening. It's frustrating," said Thiele. 

"I just get looked at and they're just like, well, we've kind of tried everything we can right now. So what have you got? What have you learned? What's new? So that's hard. Because I'm going to them for help right?" 

She often has to drive four hours into Winnipeg to see specialists at different health facilities and the trips also require an overnight stay and a hotel room, which adds up, she said. 

Currently, she's participating in three different studies from the University of Manitoba, Sunnybrook Health Sciences Centre and Queen's University, with the hope they will help her find answers. 

"Any research study, we're just like, yes, let's jump on it. I know we're all looking for some kind of treatment, some kind of help," she said.