Working with long Covid, the case for better evidence and knowledge in the workplace

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Worried woman having a phone conversation

By Rebecca Riley, Associate Professor
Birmingham Business School

A new report from the TUC and the charity Long Covid Support reveals as many as two-thirds of UK workers with long Covid have faced unfair treatment. Based on the work of City REDI and my own personal experience, I reflect on their findings and recommendations.

An estimated 1.9 million people living in private households in the UK (2.9% of the population) were experiencing self-reported long Covid (symptoms continuing for more than four weeks after the first confirmed or suspected coronavirus (COVID-19) infection that were not explained by something else) as of 5 March 2023.

Long Covid symptoms adversely affected the day-to-day activities of 1.5 million people (79% of those with self-reported long Covid), with 381,000 (20%) reporting that their ability to undertake their day-to-day activities had been “limited a lot”.

I am one of them, although I am not self-reported. I had Covid in March 2020, it affected my head, throat, kidneys, and skin. At the time, these symptoms were not the ones we were aware of, and as a result I didn’t realise it was Covid. It was over six months later that I was tested for antibodies, by that time the virus had damaged my kidneys. At the same time I was monitoring the economic and wider impacts of the pandemic on the population of the West Midlands through regular monitor reports for West Midlands Mayor Andy Street. Through this research I was acutely aware of the affects, including new reports of a mysterious disease ‘long covid’. This made me more aware of the symptoms as they emerged and meant I was more aware of my own symptoms.

There are over 200 symptoms of long Covid, including breathing and chest problems, fatigue, pain, headaches, sleeping, brain ‘fog’, dizziness, delirium, stomach issues, mental health effects, ear, nose and throat problems, and skin rashes. You can have any combination, in any time period post Covid, making it difficult for the individual to cope with and the employer to manage.

Employers are facing some of the tightest labour market constraints for decades, with some of the highest vacancy rates, retirement rates and sickness rates on record. This makes it difficult for businesses to accommodate any illness, especially with all the other pressures, such as supply chain, energy, and debt issues.

As the TUC point out, a consequence of this is that employees have been let down. This is especially the case in sectors where employee Covid cases were high, all sectors where jobs involve a high level of personal contact and are routed in being in a workplace.

In my own case at the University, home working was an option, which resulted in me having very little time off and continuing work throughout the long Covid issues. I was also clinically diagnosed early on, research in the BMJ recorded only 23,273 cases diagnosed in March 2021, far less than the ONS data on self-reported incidence at the time (1.1m). Ben Goldacre, the lead researcher from the University of Oxford’s Nuffield Department of Primary Care Health Sciences, said, “We were surprised to see almost a hundred-fold difference in prevalence between population survey estimates and formally recorded diagnoses for the same condition.” He added, “Good data on long Covid will be crucial for research into prevalence, its causes and consequences, and to plan services effectively.” Since this work the diagnostic tools have been updated and the clinical language has evolved to include long Covid, which will hopefully lead to better diagnosis.

I was part of a pioneering long Covid programme which enabled me to describe my symptoms based on medical advice. It allowed me to understand the importance of pacing, breaks, and managing each day based on your capacity. The recommendations of the report, such as flexible working, leave and phased return were all things offered to me and made my recovery easier to manage.

Like many Covid sufferers I have an underlying condition, which means I am already covered by the definition of disability. However, with any employer this needs evidencing, and long Covid is no different. Many disabilities are not listed under the Equality Act, it is up to the individual to demonstrate evidence of the illness. The Government points out that the current Equality Act would cover long Covid on a case-by-case basis, if the illness can be evidenced. But this becomes an issue for long Covid sufferers as appropriate diagnosis is required.

The medical profession is still learning and developing these diagnostics, making it difficult for long Covid sufferers to evidence the issues and impacts.

Long Covid is a devastating illness, that exacerbates other illnesses, and is affecting a significant number of people. Its symptoms are akin to fibromyalgia and ME, both illnesses equally difficult to evidence for employees, and for employers to understand. Discrimination and lack of understanding come from lack of knowledge, and as a result a lack of ability to find workable solutions. All of this points to better evidence and knowledge that will allow patients, medical professionals and employers to tackle the discrimination.

The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of the University of Birmingham.

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