Managing long COVID

The Long Road Ahead

A Guide For Businesses (originally published Jan 2021)

“Long COVID” continues to break new ground for both businesses and doctors. Although doctors are trained in how to diagnose and support post viral syndrome, the scale and complexity of Long COVID is presenting new challenges for businesses. It’s likely to do so for many years to come.

Employers may soon start to encounter Long COVID cases. These may be confirmed cases or suspected. It’s currently not possible to exclude COVID-19 as a root cause of lasting general symptoms, unless a PCR (the “do I have it now”) test was taken at the time of infection. Even then, a negative test is not considered an over-riding factor in a diagnosis.

Studies are only now beginning to show the long-term effects of COVID-19. More information will continue to become available in the coming months too. As an indication, 38% of patients who were infected with SARS in 2003 continued to show radiologically significant (visible on scans) lung problems 15 years after infection.

The different phases of COVID-19

The first step is to become familiar with the language doctors use to describe the different phases of COVID-19, as they are very distinct. They may well be used in occupational health reports in the future.

Acute COVID-19 is when employees may have signs and symptoms of COVID-19 in the first four-weeks after infection.

Ongoing symptomatic COVID-19 covers those employees who may exhibit signs and symptoms from 4 to 12 weeks after infection.

Post-COVID-19 syndrome (“Long COVID”) is when symptoms develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

Does my employee have Long COVID?

You may start to receive fit notes saying “Long COVID”. The exact content of fit notes can be greatly dependent upon the employee’s GP. Sometimes they contain useful and helpful guidance, sometimes they do not.

Unless a PCR swab test was taken (and gave a positive result) at the time of infection, or specific (highly accurate) antibody testing was done in the weeks soon after infection, it is difficult to prove if an employee has had COVID-19 or not. A negative result from an antibody (the “have I had it”) test does not mean the employee has not had COVID-19. This is because the accuracy of the tests decreases as the time between infection and testing increases. Consequently, it can be impossible to definitively confirm if an employee has had COVID-19 in the past.

The NICE guidelines provided to doctors (which inform the steps they will take to diagnose and manage patients) are constantly being updated. However, the list of symptoms which could trigger a Long COVID diagnosis is almost too long to comprehend.

What are the symptoms of Long COVID?

Symptoms include shortness of breath, cough, chest pain, palpitations, fatigue, pain, memory problems, loss of concentration, disturbed sleep, headaches, pins and needles, numbness, dizziness, nausea, diarrhoea, joint pain, muscle aches, signs of depression, signs of anxiety, tinnitus, ear-ache, sore throat, loss of taste/smell and skin rashes.

How long will it take to recover from Long COVID?

There is no definitive guide for exactly how long it may take to fully recover. Recovery times can be different for every patient, although symptoms usually resolve within 12 weeks for most patients.

The chances of developing Long COVID are not thought to be linked to the severity of the initial infection. Some patients report long-term problems, although were never hospitalised during the initial infection. New or ongoing symptoms can occur and can also change dramatically at any time.

How is the diagnosis made?

Currently, diagnosis is made during or following a consultation with a GP. This can be completed by phone, video or in-person. A screening questionnaire may be used, but only in conjunction with a clinical assessment. The individual may be referred for further tests, or to other medical specialists. It can be a very subjective process.

Doctors are keenly aware that symptoms can be wide-ranging and fluctuating. Doctors cannot and will not predict if someone is going to get Long COVID.

If cognitive symptoms are reported, doctors must use validated screening tools to assess impairment and impact. Respiratory symptoms may be assessed with a chest x-ray or CT scan.

In some cases, an exercise tolerance test suited to the person’s ability (for example a 1‑minute sit‑to‑stand test) may be used. During the test, the level of breathlessness, heart rate and oxygen saturation are recorded, in order to confirm or exclude a problem.

Some blood tests (like full blood counts, kidney and liver function tests, C-reactive protein (CRP), ferritin, B-type natriuretic peptide (BNP) and thyroid function tests) may be useful. Many of these tests are commonly included in most health screening services, so you may find them included within a company benefit scheme, if one exists. 

However, the results are confidential and will not be shared with an employer. Most health screening services do not take responsibility for managing any concerns that they may find too, so employee’s may well find  themselves being directed back to their own GP.

Working with occupational health

If occupational health needs to confirm or exclude COVID-19 whilst acting on your behalf, they may write to an employee’s GP to ask if any of these tests have been done. This will always need the consent of the employee. Employers may be able to arrange for the tests to be conducted privately, however, they are likely to attract a benefit-in-kind liability. The results may not be conclusive and can only be carried out at the request of a treating doctor. 

This is an important distinction, because the role of occupational health is to independently advise and inform, rather than treating patients. Arranging treatment for patients is seen to undermine the objectivity and independence of the advice that occupational health can provide, so it is not often done.

There is no test currently available to accurately confirm or exclude whether someone has had COVID-19. Although an antibody test can confirm is someone was infected, it cannot entirely exclude infection.

NICE guidelines currently say that patients cannot be excluded from referral into multi-disciplinary assessment, further investigations or specialist support based upon the absence of a positive COVID-19 test.

What can be done to aid recovery?

The first step considered to support patients with Long COVID is likely to be self-management. This includes setting goals to aid recovery, providing information about who to contact if things get worse, referral to support groups and sources of support.

It is not known whether over-the-counter vitamins and supplements are helpful, harmful or make no difference.

If symptoms seem likely to persist, doctors will encourage employees to engage with their employers. They may suggest phased returns to work. If you haven’t already, it is at this point that you should consider making a referral to occupational health. They will be able to advise on any potential workplace adjustments.

Depending upon the severity of symptoms, some employees may be referred into multi-disciplinary rehabilitation support. This may include psychological, physical and psychiatric services. It may be possible to replicate or offer enhanced programmes privately, although it’s worth seeking specialist advice from occupational health before commencing any support.

What can we do to support an employee with Long COVID?

It may be incredibly challenging for HR specialists and doctors to navigate the complexities of Long COVID. Because it cannot be ruled out, it is likely that every employee who presents will need to be given the benefit of the doubt. No doctor will ever accuse a patient of lying.

Because the diagnosis is subjective and the symptoms are varied, it is in many ways reminiscent of some other chronic conditions, which can also be challenging to manage. Chronic conditions like Fibromyalgia, Chronic Fatigue Syndrome (ME) and some types of back pain are just some examples. 

Consequently, rehabilitation from Long COVID may involve many different parties. Primary care, occupational health, physiotherapy and other services are likely be involved, possibly in different phases. This may well require some significant patience and co-ordination, especially if it is led by an employer.

Just because an employee has a long-term medical condition, it does not mean an employer has no options. As a last recourse, the capability channel will remain available. However, that will usually require professional insight and support from occupational health and/or specialist legal support.

What does the future hold?

Although it is incredibly difficult to predict the future, more and more information is becoming available that suggests how things may develop.

One large study following a cohort of 1,733 adults in Wuhan has just been published in The Lancet. It contains some fairly illuminating statistics, which may possibly correlate with future post-infection recovery patterns in the UK.

Researchers followed the group (with an average age of 50 and a roughly even split between males and females) over six months, after confirmed infection with COVID-19. All the patients spent time in hospital, although only 4% were admitted to intensive care.

Six months after infection, 76% of patients reported at least one post-viral symptom. Fatigue and muscle weakness were the most commonly reported. More than 50% showed residual chest problems on scans that were taken.

The findings are consistent with other smaller studies that have been done, which showed that many patients showed lingering chest problems three-months after infection.

Clinicians are already suggesting that the future support for Long COVID recovery will involve a much more nuanced approached than historical approaches to rehabilitation. It is likely to require physical, psychological, biological and social support, possibly for many years to come.