Getting Care for Long COVID

All of the people we spoke with told us that accessing care for long COVID had been a challenge. Initially, this was because pandemic lockdowns limited access to family doctors and other healthcare providers. Later, access to in-person and virtual services improved, but many participants still found it difficult to get referrals to specialists. Those who did get referrals to specialists often faced very long wait times. Moreover, at the time we conducted these interviews, there was very little guidance or research available, and many healthcare providers simply had no idea how to diagnose or treat long COVID. Specialist clinics for long COVID eventually started to emerge in some areas but only a few of our participants were able to gain access to them. Despite the many challenges, some of the people we spoke with did find healthcare providers who acknowledged their symptoms, as well as the uncertainties involved, and found ways to offer support and care.

Although there is still no cure for long COVID, there is now dedicated funding for research (see, for example, the Canadian research network: https://www.longcovidweb.ca), some best practice guidance for healthcare providers (see: https://canpcc.ca/home/), national and local support groups (see, for example: https://www.covidlonghaulcanada.com and https://www.facebook.com/groups/longcovidcanada/), and a growing number of resources to help patients and families living with long COVID (see for example: https://www.longcovidweb.ca/resources/trusted-resources-patients-families). See also the Resources section of this site for additional information about getting help.

 

Hospital Emergency Departments (ER)

During periods of the pandemic lockdown, most doctors were not offering in-person appointments and virtual appointments could be hard to get. As long COVID symptoms could sometimes be intense and alarming, people struggling with long COVID often went to hospital emergency departments because they had no other option.  As Victor explained, “After the acute phase … I still went back to the ER twice, because I kept having those symptoms and I didn’t really have anywhere else to go … the ER was the only place that I knew they would at least look into me to see.”

 

Care from Family Doctors and Other Primary Care Providers

Participants who had family doctors told us about trying to get help from them with their long COVID symptoms. Unfortunately, because long COVID was a newly emerging condition, many family doctors did not know very much about it or how to treat it. As Luna put it, “I felt like my doctor just had run out of stuff to say. She’s a lovely woman, but she was exhausted with all these needs that everybody had and no answers.” Or as Kari told us, “I was very lucky with my family doctor that she was quite open … She did say, “We know long COVID is a thing,” so at least there was that acknowledgement, but … I’ve heard so many ‘I don’t knows’ in the last two years that that’s one of the frustrations.” Carrie 1 also felt fortunate to have a supportive family doctor. “She believed me that I had long COVID at the beginning … She always referred me to all the care that I needed. She doesn’t know much about post viral illnesses, but she’s always been open to learning and … always taken the time as well with me to understand what I’m going through.”

 

Accessing Unproven Treatments

At the height of the pandemic, some healthcare providers were offering treatments that were not supported by scientific evidence. This included prescribing treatments approved for other health conditions (sometimes called off-label prescribing) but not for long COVID, or the highly controversial use of drugs such as ivermectin which is only approved as a treatment for certain parasites. Some people may experience a change in their symptoms while taking treatments not supported by scientific evidence. However, this does not necessarily mean that the change is due to the treatment. None of the medications named in the video below have been proven or approved for the treatment of long COVID symptoms. Maraviroc and Atorvastatin are currently being investigated to see if they might be effective in treating long COVID but this has not yet been proven.

Pacing is a technique for managing and preserving physical energy by limiting activity. It has long been used by people living with chronic fatigue and is now widely recommended for people living with long COVID.

 

Difficulty Accessing Specialist Care

Many of our participants needed referrals to specialists because they had particular problems such as cardiac symptoms, neurological symptoms, digestive problems or problems with their eyesight. But these referrals could be hard to come by. When aerik was referred to an allergist the wait time was “six months to a year.” Tanya faced an 18 month wait to see a neurologist. Nicole asked her GP for a referral to a neurologist because she had tingling in her hands and feet. Her doctor told her “Oh a neurologist wouldn’t see you for that.” “So,” she explained, “I had to take myself to emergency and get seen by a neurologist that way.” Angela asked her doctor for a referral to a naturopath but her doctor refused even though it would have enabled Angela to have the visits covered by private insurance.

 

Multiple Healthcare Providers

Because long COVID can give rise to such a wide variety of symptoms, some of our participants were seen by multiple specialist physicians and other healthcare providers. For example, Kristen had been to her GP, a kidney specialist, an infectious disease specialist, an acupuncturist, a naturopath, an osteopath, a massage therapist, and a nurse practitioner. Ruth, had seen a sports medicine doctor, an internist, a functional medicine specialist, a naturopath, respirologist, gastroenterologist, neurologist, cardiologist and her family doctor. And while participants generally appreciated the consultations, very few of them found that specialists were able to help them. Moreover, participants found that seeing so many different doctors and having no coordination between them could become a burden in itself. Jennifer 2 had seen a gastroenterologist, respirologist, cardiologist, and a pain specialist in addition to her family doctor. But, as she pointed out, “It’s all siloes … there isn’t a single command centre … nobody has offered me rehab … I don’t have anything.”

 

Specialist Long COVID Clinics

While long COVID is now a recognized health condition, specialist long COVID clinics were only beginning to emerge when we conducted these interviews. There were very few facilities offering care specifically for long COVID and they were not well publicized. Tanya’s doctor’s office told her “… they’re not aware of any long COVID clinics but would gladly refer me if I could find one myself.” Nick regretted the fact that, “there is no proactive measure letting long COVID patients know that these facilities are available.” A few participants gained access to specialist long COVID care because they were enrolled in research studies but these opportunities were very limited and mostly happened by chance. For example, Jennifer 2 told us that her doctor “was listening to the radio the other day on [his] drive home and … heard that they just opened a COVID research lab.” He said, “Why don’t you give them a call?” So I did and that’s how I got into the long COVID research project.”  A couple of participants had access to specialized care through a Worker’s Compensation program. And several others had found some kind of long COVID care online.

All participants who were able to access specialized long COVID care found it helpful. The care they received at these clinics included specialized diagnostic assessments and medications, long COVID focused physio and occupational therapy, education about pacing, energy management and dealing with day-to-day tasks, and psychological support related to living with a chronic health condition. Carrie 1 “did some workshops on pacing and energy management” and “respiratory physiotherapy that was really helpful.” She also received a diagnosis of pericarditis that allowed her to access medication that improved her symptoms. Emily found a “free online rehab program” in the United States based on established treatments for people with other chronic respiratory illness. She told us, “I’ve been following that program for six weeks … which has been really good for me. I had a couple of really bad weeks when I started doing it … But overall, I feel a lot better from having done that … I’m still not fully recovered, [but] I feel a lot better than I did.”