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'Give people the power': B.C.'s post-COVID network sheds light on long-term suffering

With five clinics across B.C., the post-COVID network is offering support to long COVID patients who could otherwise go undiagnosed.
exhaustednurse
Katie Borrett had trouble getting a diagnosis for her long COVID. Until she found B.C.'s post-COVID network.

Katie Borrett is a nurse and ex-athlete. But since January 2020 she hasn’t felt her normal self and she says she might never be the same again.

Two to three months after contracting a very mild case of COVID-19 in January 2020, Borrett found herself experiencing a rash, fatigue, respiratory issues and neurological issues.

This is when she decided to seek help. 

However, without a positive PCR test — something that didn’t even exist when she first got infected — and a lack of awareness surrounding long COVID, Borrett said it was difficult to get anyone to diagnose her.

“It's the weirdest thing in the world when people don't believe you, especially when you're a nurse,” she said.

It was a humbling experience, Borrett said, getting pushed aside by the medical system she’s a part of.

“I just remember saying to my husband a million times like ‘this is wild,’ that I have to work this hard to navigate a system that I know,” Borrett said. 

Out of these feelings of frustration, Borrett found an opportunity. She heard about a clinic designed specifically to treat long COVID and immediately asked her doctor for a referral.

The Post-COVID Interdisciplinary Clinical Care Network (PC-ICCN), also known as the Post-COVID Network, was created to support COVID-19 patients still experiencing symptoms three months after their initial infection.

Conceived in May 2020, the network has officially been seeing patients for two years now since its first clinic opened at St. Paul’s Hospital.

How it works

With a total of five clinics spread out between Vancouver, Surrey, Abbotsford and Victoria, B.C. residents can get a referral to the network from their family doctor or a walk-in clinic. The care patients receive in person or online is designed by a group of clinicians and researchers.

After receiving a referral, all patients are asked to complete an intake call with a post-COVID nurse and fill out an online symptoms assessment questionnaire. 

“Typically, that includes a review of the initial illness, their most bothersome symptoms and starting to look at identifying patterns,” Michelle Malbeuf, the network’s clinical operations lead, said. 

This thorough inventory of symptoms, Malbeuf said, helps the network’s physicians establish a baseline of health for each patient.

With this inventory complete, patients are then connected to the network’s educational resources deemed applicable to their case. These resources can include group education sessions, educational videos or written resource sheets.

If, following intake, the patient is identified as someone needing in-clinic care, they’re referred to one of the clinics for some bloodwork and to meet the caretakers looking after them. This interdisciplinary team of allied health professionals can include physicians, physiotherapists, occupational therapists, nurses and social workers. 

Learning to live with fatigue

Borrett was one of these patients who received in-clinic help. Through working with the team of professionals, Borrett said she learned how to manage her energy so could avoid experiencing relapses of fatigue.

“One of the things with long COVID fatigue, which is wild, is you can cook dinner, and you'll have this huge relapse where you can barely bathe yourself for a week after attempting to do a small task like that,” she said.

In the beginning of her recovery, Borrett said she had to start out using only 10 per cent of her normal energy capacity for two to three weeks. If she didn’t relapse, she said her energy capacity could be pushed up to 12 to 15 per cent for the next few weeks.

“Once that management strategy for energy and activity got underway, I had less relapses and my recovery improved,” Borrett said. “That's probably one of the biggest things that the COVID clinic did for me.”

However, while Borrett’s case was quite severe, for lots of patients, Malbeuf said in-person care is often not needed.

“For many people, we're actually finding that those online resources are enough to really jumpstart their recovery and give people the power to do it on their own,” she said.

Virtual group sessions can be a good opportunity for some patients to receive peer-to-peer support, Malbeuf said. Each session is categorized by a symptom, such as sleep, breathlessness, fatigue or anxiety.

In these group environments, patients are given the chance to hear each other’s stories and learn more about how to identify their own patterns or triggers.

Managing symptoms for the long-term

Overall, post-COVID recovery is largely about learning symptom management strategies, Malbeuf explained.

“Something like screen time, driving or even just having auditory stimulation can be enough to trigger someone's symptoms,” Malbeuf said. “But until [patients] have the understanding of how to track that and identify it, it's really tricky to improve those symptoms.”

While Borrett continues to manage her symptoms after being discharged from the clinic at the end of last year, she has also been volunteering with the network’s clinic at St. Paul’s Hospital for the past 14 months.

“The reason why I volunteer with them is because we need to improve the care for people with long COVID,” Borrett said. 

“Clearly there was a gap there and that clinic opening was, I'm not a religious person, but it was a godsend for a lot of people.”

Malbeuf said while the number of patients being seen by the network continues to grow, the number of referrals to the network has noticeably slowed down. She said this could be attributed to the network’s effort to educate other health-care providers, so they’re equipped with the tools they need to help long COVID patients in their own clinics.

For now, Borrett said she’s back at work but is still unable to return to providing bedside care for her patients because that role is still too physical for her to manage.

“I'm never going to be myself. I've made a lot of sacrifices and I've worked really hard to get to where I'm at,” Borrett said.

Currently, at about 75 per cent of her pre-COVID self, Borrett said she’s hopeful about getting to 85 per cent, but never 100 due to permanent vascular damage.

“I wish people knew that not everybody comes out of long COVID unscathed and there's permanent disabilities that come from it,” she said.

“That's something that I don't think is commonly understood.”