Supporting long COVID patients and the people who care for them

We live by one massive disabling event: More than 200 million people worldwide suffer from long-term COVID-19. In Canada, one in nine people have experienced COVID symptoms for a long time, and this is likely an underestimate.

This chronic disease that occurs weeks to months after a COVID-19 infection has led to what somethe shadow pandemicWhile millions of people are battling this new disease, both patients and their caregivers still face challenges accessing the information and care they need four years into the pandemic.

Most Canadians have had COVID, and at least one in five has been infected more than once. These trends are troubling because there is evidence that the The risk of getting long-term COVID increases with reinfection.

Long COVID-19

Long COVID is a complex disease that can manifest itself in a range of neurological and cardiovascular symptoms, such as post-exertional malaisepalpitations, cognitive impairment, fatigue and about 200 other symptoms. Some people with long COVID-19, often called “longhaulers,” experience other under-researched syndromes, such as myalgic encephalomyelitis (ME)– also known as chronic fatigue syndrome.

With a range of life-changing consequences, it is not surprising that long-havers can also experience consequences for their mental health, financial stability and relationships with others. These experiences are compounded by the fact that there is no cure for long COVID.

Over the past year, our team at Simon Fraser University has spoken with long-term COVID patients, unpaid caregivers – such as family and friends who take on caregiving responsibilities – physicians, and long-term COVID researchers to better understand patients’ experiences. In a new reportwe have documented some of the challenges patients and their caregivers face, as well as recommendations to reduce these barriers.

Holistic approaches to care

Because symptoms and experiences vary, there is no single care approach that can support all long-havers. In British Columbia, post-COVID recovery clinics have played an important role in creating specialized regional spaces for long-term COVID care.

These clinics have combined physician care, allied health care – such as physiotherapy and occupational therapy – and patient support groups. The closure of in-person clinics in the transition to an online healthcare systemcoupled with long wait times, has left some patients struggling to reach these clinics.

Longhaulers have emphasized the value of specialty clinics and the need for them holistic approaches that include allied health care to address the multifaceted impacts of long COVID on patients’ lives. Healthcare providers in particular indicated a need for mental health support due to additional pressure on their ability to work, their relationships and other responsibilities.

Holistic approaches are being embraced by some groups, such as the Clinical Post COVID Society in the UK, which has a ‘diverse multidisciplinary clinical leadership team to reflect the varied expertise required to care for patients with long COVID.” This example can serve as a useful model for mobilizing these approaches in Canada.

Information

Access to information about long COVID-19 remains a major challenge. While long-haul carriers obtain information from healthcare providers (which may vary and be contradictory), many cannot meet a doctor.

In B.C., approximately one in five people does not have a GP. As a result, many have to search for information on their own, scrolling through websites and articles while trying to discern what to trust. This can be especially challenging for people who suffer from brain fog and fatigue, or for people who are limited in time and resources due to caregiving, work, or other demands on their time.

Patients, caregivers, physicians and researchers are suggesting that the federal government establish a national long COVID information platform that will provide details on symptoms, symptom management, a database of providers providing long COVID care, and updates on recent research.

This could be modeled after the Post-COVID MyGuide, produced by the Post-COVID Interdisciplinary Clinical Care Network in BC. And while such tools are critical to supporting long-haul carriers, they are only useful if people have access to them. Therefore, more investments are needed to raise awareness of these platforms, evaluate their utility, and explore ways to scale them up for national use.

Prevention

Another key outcome for improving care is refocusing preventive efforts to reduce the risk of reinfection for long-haulers and future long-term COVID cases. Prevention measures may include campaigns that promote wearing respirators, regular vaccinations, increasing paid sick days, or improving indoor air filtration and ventilation.

Preventing long COVID-19 also includes taking these precautions if there is no visible illnessas some early estimates suggested 59 percent of transmission occurs without symptoms.

Our team put these prevention measures into practice in April when we launched a… hybrid long COVID event of Pulitzer Prize-winning journalist Ed Yong and a panel of patients, caregivers, physicians and researchers. The event included safety measures such as mandatory masking in KN95/N95 respirators, rapid testing of participants and MERV-13 air filters.

Both during and after this event, we received numerous messages from longhaulers talking about how the event and the safety measures in place were meaningful to them and made them feel seen. To do this, there are many steps collectively (researchers, clinicians, policy makers and the public) can take to create safe spaces as a foundation to reduce transmission risks.

As we continue to grapple with the lasting legacy of the COVID-19 pandemic, we must recognize that many communities have been disproportionately affected by SARS-CoV-2. To address these multiple impacts, patients and healthcare providers are calling for continued investments in patient-centered research and care to create initiatives that are resonant and relevant to those most affected.

To further amplify these stories and raise awareness, our team is developing a Long COVID Photo exhibition ‘Day in the life’ in partnership with the Museum of Vancouver, where long-term COVID patients can share their stories and photos. These types of activities are a new step in making the experiences of people with an invisible illness visible.

This article is republished from The conversation under a Creative Commons license. Read the original article.