The service that helps Nova Scotians faced with ongoing health issues following a COVID-19 infection is struggling to find a primary care provider to oversee its medical component.
Much like the 120,409 Nova Scotians currently on the Need A Family Practice Registry as of November 1, the post-COVID health service team isn’t having much luck finding a replacement for its physician.
“We see this in a variety of areas in the health system right now, and our post-COVID service is not immune,” Ashley Harnish said in an interview.
Harnish is health services manager with primary health care for Nova Scotia Health (NSH).
She said the lone physician who worked with the post-COVID service out of the Integrated Chronic Care Service (ICCS) in Fall River left for another opportunity in mid-September.
After learning of the planned departure, the team began actively searching for a replacement. When physician recruitment efforts didn’t bear fruit, they expanded their search in August to include a nurse practitioner.
“If there are folks out there that have those designations and are interested in this opportunity, I would love to hear from them because have I got an opportunity for you,” Harnish said.
“It is very much an active piece of work. We are hitting the same challenges as all physician recruitment and nurse practitioner recruitment.”
Harnish said she doesn’t have data on the number of patients the physician would have supported as not everyone needed to see him. But even before his departure, she said primary care providers were always the ones most responsible for patients.
“The physician on our team really looked at it just from the lens of what are your clinical needs, presentations, assessments needed from a post-COVID perspective and always worked very closely with folks’ primary care providers about sharing their findings, collaborating on the goals of care and the plan of care for those patients,” she explained.
“So regardless, we were always very much involved with the primary care providers for patients.”
‘Not vital to the success of the service’
Despite this, no longer having a physician on the team has meant some adjustments. Describing the service as designed to decrease the burden of “wayfinding” through the health care system, Harnish said the team is continuing to meet the needs of post-COVID patients.
“We’re experiencing the challenges within our health system right now and we’re trying to think about how we support patients in our service, outside of our service,” she said.
“We have been living in this world without a physician for over a month now. How can we still extend self-management supports and (expedite) our wait times? How can we still support folks who are waiting to get into our service?”
If a patient doesn’t have a primary care provider the team liaises with virtual care providers, which is why Harnish urges people to get their names on the Need a Family Practice Registry in order to access virtual care.
“Certainly the medical component is a valuable part of our team, but we have many valuable parts. It’s not vital to the success of the service,” Harnish said.
“And we have lots of clinicians who are still seeing folks in the post-COVID service and really looking at their functional needs as well.”
‘In high demand’
This comes at a time when the number of Nova Scotians reaching out for help to deal with ongoing symptoms after a COVID-19 infection continues to rise.
“There’s a demand for the service,” Harnish said. “We’re certainly seeing that. There’s ongoing COVID in the community, so of course we’re going to have ongoing needs for our service.”
The condition often referred to as long COVID includes new, returning, or ongoing symptoms ranging from brain fog and extreme fatigue to headaches, sleep problems, mood changes, and cardiac issues. While there are more than 200 symptoms, a list of the most common ones can be found on the NSH COVID recovery page here.
In Nova Scotia (and many other jurisdictions), patients are considered to have long COVID if they have common, persistent symptoms and at least one functional impairment due to their symptoms 12 weeks or longer after an initial — or a suspected — COVID-19 diagnosis.
Harnish said 260 people have already completed post-COVID service programming and there are currently 100 people actively using the service.
Another 250 are waiting in a queue. These are people who are eligible to access the post-COVID navigator but have yet to be formally connected.
“They may be booked to see the navigator. She’s getting a bit of a wait time because she’s in high demand,” Harnish said.
“Some of those folks we would have tried to reach out to and they would have declined service…(because) everything’s back on track now, and some of those folks we’re just having a hard time getting a hold of.”
People eligible for the post-COVID navigation services are those who’ve filled out the community outreach survey at least three months after an infection. They’ll have persistent needs/symptoms and at least one functional impairment.
“These are things like I can’t get my groceries, I can’t go to work, I used to be a marathon runner and I’m not anymore,” Harnish said.
‘Can’t predict who’s going to get post-COVID’
The post-COVID team began seeing patients in September of 2021. Over the last year, Harnish said they’ve learned a lot about just how complex long COVID is as patients present with a wide range of clinical presentations.
“Those folks that are coming into the service, there’s a lot more for us to unpack so naturally they’re with us a bit longer and that’s all part of building a brand new service in real time for a clinical presentation we’ve ever seen before,” Harnish said.
“This is all brand new for us so it puts the team in a position where we are always learning, adapting, growing, adjusting.”
Research suggests that between 10% and 20% of people infected with the virus that causes COVID-19 will experience longer term effects after recovering from the initial illness.
Last month, a study released by Statistics Canada and the Public Health Agency of Canada found that 1.4 million Canadian adults (4.6% of the population age 18 and older) had symptoms at least three months after an initial or suspected COVID-19 infection.
Harnish said one of the challenges they face is not knowing how many patients might need their service, an uncertainty exacerbated by a lack of data.
“We don’t have the same information for health planning like we did a year ago so that’s going to naturally change what we can predict coming in and (we’re then) adjusting to that demand,” she said.
Among their initiatives, the post-COVID team is in the process of editing a podcast based on the standard list of questions and concerns they hear from long-COVID patients who access the service.
“We’re really thinking about information that’s front-facing so that when folks come in, they’ve got the basic understanding from a research and evidence perspective from our clinicians,” Harnish said.
“Now let’s talk about your experience with post-COVID and what you’re living through. So that’s our approach right now. We are learning and we are changing, and the secret sauce we have today might not make sense tomorrow and we’re open to it and constantly adjusting to that.”
The team’s website is where primary care providers, patients, and their family and friends can access up-to-date and relevant post-COVID information. Harnish said in addition to their patient offerings, they’re working on increasing public awareness about long COVID.
“Perhaps once more research happens it’ll change but we can’t predict who’s going to get post-COVID and who’s not at this stage,” Harnish said.
‘Just want to get your life back to normal’
In 2020, Prospect Bay resident Nadine Hardiman was infected with COVID-19. Her life has never been the same.
“You just want to get your life back to normal. Before I got COVID, I was going to the gym seven days a week and having a swim afterwards,” Hardiman said in an interview.
“Now I’m going to the pool twice a week and barely doing anything because if I do, I’m down for days.”
Hardiman’s post-COVID issues have included exhaustion, migraines, brain fog, and nerve pain.
She now struggles with post-exertional malaise (PEM) where even a minimal amount of exercise leaves her drained and exhausted. She’s on a low histamine diet and requires antihistamine medication due to unexplained bouts of hives.
She also has orthostatic intolerance, meaning she can’t stay upright for very long without experiencing cardiovascular symptoms. That requires her to spend a lot of time in a wheelchair.
“You don’t want COVID even once. I think people have to see or know somebody before they realize this can happen, and you don’t want to end up disabled for the rest of your life,” she said.
Hardiman is now an advocate for long COVID patients. As one of the administrators for the Atlantic Provinces COVID Long-Haulers support group on Facebook (an offshoot of the 18,000 strong national support group), she has been advising fellow Nova Scotian long-haulers to not worry too much about the lack of a post-COVID service physician.
“I only saw him (post-COVID physician) a couple of times and it was mostly notetaking and then saying, ‘Well, maybe you should ask your doctor’ so he was just sort of a referral,” Hardiman said.
“Even without it, it’s a great service. I found most of my help was through the group itself and being with other people, and we’ve learned more from each other and they’ve learned a lot from us.”
Hardiman said although her health has had its ups and downs post-COVID, she’s in a much better state mentally thanks to the clinic’s services.
In addition to accessing physiotherapy, occupational therapy and dietician services, she found the clinic’s group sessions particularly helpful. She said it was a “huge” relief to meet and connect with people who understood what she was going through.
“The greatest thing about it is that there’s somebody out there listening,” she said. “Because people just didn’t know what was happening, wondering were they going crazy when there’s so much happening with your body and no explanations.”
Hardiman said while the patients with whom she’s spoken also had positive experiences with Nova Scotia’s post-COVID team and its services, the wait times are increasingly frustrating for many. She encourages people to access the NSH online library for free, helpful resources while they wait to get in.
She also wants the general public to understand that because researchers don’t yet know who will or won’t be plagued with long COVID, avoiding infection by masking and employing other mitigation measures is the best way to avoid it.
“A lot of people still don’t have a clue what long COVID is. I see it every day on different social media,” she said.
“People will be saying how sick they are and the first thing I ask is did you have COVID? There are so many people sick out there who don’t have a clue what’s wrong with them.”