How providers, health care systems can support long-haul COVID patients

As a health care manager, Steph works in a role that requires critical thinking and quick decisions. When she caught COVID’s Delta variant in November 2021, Steph (who doesn’t want to use her last name) was double vaccinated and was two days from getting her scheduled booster. Her only risk factor was that she has asthma.

Today nearly one year later, Steph still has long-haul COVID and is a patient at the Providence COVID Recovery Clinic. For many months, she had to juggle complicated logistics related to workers’ compensation, occupational health and access to the health care services she needed. She continues to struggle cognitively and physically but has made important strides, thanks to the Providence COVID clinic, Medical Director Carmen Kendall, M.D., and her entire care team.

Shortly after diagnosis

After Steph was exposed at work and became sick, she initially took off a week or so to recuperate. When she came back, everything was a struggle. Her fatigue level was overwhelming, but the cognitive symptoms were worse.

“I couldn’t follow conversations at work, especially if there was more than one person involved. Once I got COVID, I couldn’t analyze and synthesize information,” she said. She had to read even simple things over and over to try to understand. Tasks that previously took minutes now took hours.

Complications with access to care

Since her exposure occurred at work, Steph filed a workers’ compensation claim. That began a challenging journey – made more complex by cognitive and physical exhaustion – of accessing the care she needed, dealing with insurance and going to appointments. Additional COVID surges continued to reduce access to busy clinics and services.

Steph couldn’t get medical leave from work unless she had a diagnosis of long-haul COVID.  Access limitations delayed the diagnosis, and she had no choice but to quit in February 2022. She’s grateful she could see her primary care provider, who helped get her into the COVID clinic.

“Access to care definitely was my biggest hurdle,” Steph said, adding she still struggles to get all the services she needs, mainly due to complications between workers’ comp and occupational health.

Support from the Providence COVID Recovery Clinic

Steph says getting care from the Providence COVID Recovery Clinic has been “life changing,” and she is very grateful to Dr. Kendall and other members of her care team. Getting referrals to speech and physical therapy were key.

Although Steph used to run, climb and ski, just standing up and changing positions caused tremendous exhaustion. Physical therapists began working with her to do seated weightlifting and other low-impact exercises.

Speech therapists conducted an initial evaluation, determining Steph had “substantial deficits,” she said, which mainly were caused by an inability to focus and maintain attention. “I learned pacing exercises to help me determine how much I could do in a day.”

Advice for primary care providers and health systems

Dr. Kendall says primary care is a key partner in the health of their long COVID patients. Her advice to providers includes:

• Proceed with the workup of symptoms as appropriate. This may involve labs, imaging, specialty referrals if urgent, and regular follow-up within the clinic to assess progress.  
• Follow up often. Close primary clinic follow-up is the best treatment course in the first 90 days after acute COVID. Primary care providers can provide important support and validation, as well as insight into post-acute COVID.
• Stay educated about the latest research regarding long COVID and about the patient experience.

“Many patients do not have the skills to navigate workers’ comp or even go through the steps to make medical appointments, especially with cognitive issues,” Steph said. During the worst of her cognitive issues, it helped when providers and care team members talked to her using short, simple sentences or questions.

Dr. Kendall has seen first-hand what patients go through. “Many of the stressors long COVID patients experience can make their post-COVID symptoms worse. This includes anxiety related to uncertainties about their future health, medical work leaves and finances, difficulty with parenting and management of the household, and access to care,” said Dr. Kendall. “At Providence we talk about ‘easing the way’ for the patient. For these patients, this might best be done by connecting them with care management, community resources, mental health support and possibly the COVID Recovery Clinic.” 

Current prognosis and long-term goals

Today, Steph has made considerable progress, and she was able to get her old job back in July 2022. She still deals with unpredictable fatigue. “There’s an invisible line that’s too much physically or cognitively, and you don’t always know where it is,” she said. She rarely sees friends because of her exhaustion, and the social isolation can be lonely.

Her long-term goal is to get back to her pre-COVID state, both physically and cognitively. Physically, she thinks that may happen this spring. Cognitively, she’s not so sure.

“The way I look at it, I can be upset with it or at peace with it,” Steph said. “I have to meet my body where it is and make the most of it.”

For more information

Providence COVID Recovery Clinic 971-326-8718

https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/