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Workers' experience of Long Covid

Joint report by the TUC and Long Covid Support
Report type
Research and reports
Issue date
Executive summary

The Covid-19 pandemic continues to impact heavily on all our lives and one of the long-lasting, but unanticipated, impacts is the emergence of Long Covid. Whilst many people infected by Covid-19 may fully recover, significant numbers will experience varied, ongoing and debilitating symptoms that last weeks, months or years following the initial infection. This prolonged condition has been given the umbrella term Long Covid. Recognition of Long Covid was accelerated by people-led advocacy groups such Long Covid Support.3  Their Employment Group (LCSEG)4  advocates for better support to stay in, return to or leave work well. 

The Office of National Statistics (ONS) reported that, as of 1 August 2021, 970,000 people in the UK were experiencing self-reported Long Covid.5  The most recent data from 2 January 2023, shows that this has increased to 2 million people6  – this figure is bigger than the population of the cities of Birmingham and Manchester combined. Early research into reinfections 7  shows the risk of Long Covid is still present in subsequent infections, even if not experienced the first time.

This report summarises the findings of a self-selecting survey of 3,097 people with Long Covid in September and October 2022 on their experiences of work.

Treatment at work

Our research found shockingly high levels of poor treatment by employers. One in seven respondents (14 per cent) had lost their job because of reasons connected to Long Covid. Given the high numbers of people experiencing Long Covid, this finding is extremely concerning and many people losing their jobs could be in key sector roles.

Two thirds of respondents (66 per cent) said they had experienced one or more types of unfair treatment at work. This includes one in six (16 per cent) who had been subject to bullying and/or harassment at work, one in 13 (8 per cent) told us they had been threatened with disciplinary action and almost a quarter of respondents (23 per cent) said their employer has questioned whether they have Long Covid and/or the impact of their symptoms.

Half of respondents (49 per cent) said they had reason to believe they had contracted Covid-19 at work highlighting that many people are being continually failed by their employer, from a lack of health and safety measures, including ventilation, to poor treatment in response to Long Covid.

Symptoms

Long Covid is an umbrella term that refers to multiple different symptoms people may experience. Nine in ten (92 per cent) respondents were currently experiencing Long Covid symptoms. The most common symptoms were fatigue (96 per cent), cognitive dysfunction (84 per cent) and shortness of breath or difficulty breathing (73 per cent) amongst a list of many. The range of symptoms experienced by people with Long Covid highlights the need for employers to listen and believe individuals as people’s experiences and the barriers they face in the workplace will be different. Over nine in 10 (93 per cent) respondents also stated that their symptoms fluctuated and over eight in 10 respondents (86 per cent) said they experienced post exertional malaise. This is the worsening of symptoms following physical or mental activity, which can mean that people have to limit their activities and need additional rest periods. Previous research on energy limiting impairments demonstrates that there is much scepticism about the existence and extent of fatigue and a view that it is not a “real disability” creating additional barriers for people who need support from their employers.8

Overall, 60 per cent of respondents said they had been experiencing symptoms for over a year. Six in 10 respondents (63 per cent) told us that their ability to carry out normal day to day activities had been limited substantially and a further third (33 per cent) reported that their ability to carry out day to day activities had been limited to some extent. 

Fear of speaking to employers

Our report demonstrated feelings of fear or disillusionment when it comes to speaking to employers about experiences of Long Covid, which is not surprising given the poor treatment revealed. More than one in ten (12 per cent) respondents did not inform their employer of their Long Covid symptoms at all. Of these, a third (36 per cent) said it was because they didn’t think their employer would do anything or they were worried that their symptoms would be viewed negatively by their employer (31 per cent). 

Additionally, of the respondents who did share some or all of their symptoms, one third (33 per cent) had not asked for any changes to their job. Of those who had not asked, only one in six (16 per cent) said it was because they did not need any changes. One in three (32 per cent) said they were worried that they would be viewed negatively by their employer.

Accessing changes at work

Of the respondents that did ask, our report reveals the difficulties people are facing accessing the changes and support they need at work and the reluctance of employers to remove barriers to inclusion. Almost half (48 per cent) of respondents reported they were not given all or any of the changes they needed to return to work, and half (50 per cent) were not given all or any of the changes needed to manage their job.

Our findings reveal that employers are seeing standard phased returns to work as the main solution, which, whilst important, fails to recognise the fluctuating nature of the condition. Respondents also reported that flexibility in their role was essential but that this was often the hardest adjustment to get from their employer. Four of the five changes with the biggest discrepancy between being asked for by the person and being put in place by the employer are forms of flexibility: flexibility to support fluctuations in symptoms, longer or more frequent breaks, permanent home working and other changes to hours.

Financial impacts

Our research also exposes the financial impacts of experiencing Long Covid. Half of respondents (50 per cent) said they had to use their savings to financially support themselves, one in sixteen (six per cent) told us they had taken out a private loan or debt service and one in sixteen (six per cent) were using food banks. The report also highlights the difficulties people with Long Covid experience when trying to navigate the social security system.

Our report demonstrates the negative health impacts of poor treatment at work and the process of applying for social security, with respondents reporting relapse and worsening of symptoms.

Context of the research

In June 2021, the TUC and LCSEG conducted a similar survey and produced one of the first reports to demonstrate the impact Long Covid was having on people’s experiences of work. The comparisons between the two surveys reveals how starkly the situation has deteriorated. Half (52 per cent) of the people who responded in 2021 had experienced some form of discrimination or disadvantage, rising to 66 per cent in this survey and 5 per cent had been forced out of their jobs rising to 14 per cent in this survey. The percentage of people not given any or all of the changes they need at work is a notable increase from our 2021 survey (48 per cent of respondents in this survey said they were not given any or all of the changes requested for returning to work and 39 per cent in 2021). These percentage rises are striking and even more concerning as the affected population, as measured by the ONS has also more than doubled.

The impact on work is reflect in national statistics. Over recent years, the number of people in the UK who are out of the labour market has risen sharply. Analysis from the ONS published in December 2022 concluded that Long Covid is likely to be one of the factors contributing to the declining levels of labour market participation during the pandemic.9  However, there has been no targeted government action for people with Long Covid to be able to access and stay in work should they want to.

We have also witnessed some confusion on what legal protections people with Long Covid are entitled to and what employer’s duties are towards them, including whether people with Long Covid are protected under the Equality Act 2010. 

People are deemed disabled under the Equality Act 2010 if they have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on their ability to do normal daily activities.

Whether someone meets the Equality Act 2010 definition of disability 10  would be based on the experiences of that individual. However, our findings indicate that many who responded to our survey would meet it, entitling them to protections and the right to reasonable adjustments. First and foremost, employers should support people in the workplace as it’s the right thing to do, but our results also raise concerns that, by not doing this, many employers could be acting unlawfully.

Both the 2021 and 2023 reports demonstrate clearly that too many people have been and continue to be failed by their employers, in increasing numbers. Many are key workers who kept the country running and yet have been faced with disbelief, negative treatment and a lack of support from employers and government. This report is vital to draw attention to people who have fallen out of work, are underemployed, struggling to remain in or return to work because of the virus. 

If we do not take urgent action to ensure that people with Long Covid are properly protected and supported we run the real risk of new, long-lasting inequalities being created with damaging impacts on people’s lives, our economy and our public services, where many of these people are employed. 

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Authors

The co-authors of this survey and report from Long Covid Support Employment Group (LCSEG) are Jenny Ceolta-Smith, Polina Sparks, Lesley Macniven, Clare Rayner, and Kirsty Stanley.

As financial and employment impacts on its members became more commonplace, in late 2020 a Long Covid Support Employment group (LCSEG) was formed to meet this need for advocacy. Members of this group, who offer both lived experience and relevant occupational expertise in the areas of HR management, leadership, change management, occupational health, occupational therapy and more, have worked alongside the TUC since March 2021. This is the second survey we have jointly produced, with responses from many of the tens of thousands of people with Long Covid that are supported by Long Covid Support.

As well as the TUC, LCSEG has co-produced resources with the Chartered Institute of Personnel and Development (CIPD), the Society of Occupational Medicine (SOM) and others, all of which are free to download on our website.1

Long Covid Support is a charity registered in England and Wales (1198938) which works across the UK, and internationally, to advance equitable access to high quality healthcare, research engagement, employment rights and welfare services.

The Trades Union Congress (TUC) exists to make the working world a better place for everyone. We bring together more than 5.2 million working people who make up our 48 member unions. We support unions to grow and thrive, and we stand up for everyone who works for a living. 

Long Covid Support and the TUC have worked together since March 2021 to highlight the experiences of people with Long Covid and fight for better support for those affected, including to stay in, return to or leave work well.

Acknowledgements

We are grateful to Catherine Hale, former Director, Chronic Illness Inclusion; and members of the TUC Disabled Workers’ Committee who generously shared their insight and expertise with us for this report and to everyone who took the time to complete the survey.

The social model of disability

The TUC and Long Covid Support endorse and use the social model of disability.2 The social model was developed by disabled people to identify and take action against oppression and exclusion. The social model of disability holds that people with impairments are disabled by barriers operating in society that exclude and discriminate against them. For example, barriers can be social and cultural attitudes, organisational and/or physical barriers that prevent equal access. The social model advocates for a “nothing about us without us” approach in which disabled people should have choice and independence, and meaningful input into any decisions being made about them. ‘Impairment’ is used to describe an individual’s physical, sensory, or cognitive differences, and ‘disability’ is caused by the barriers in society.

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