Workers' experience of Long Covid

Joint report by the TUC and Long Covid Support

Report type

Research and reports

Issue date

27 Mar 2023

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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3 https://www.longcovid.org/awareness/what-is-long-covid?fbclid=IwAR0qRlkb88UwkXKOBilwJtUtO8YQCyutlKPBzesEH-6RnGe3nbgTdyQxOhk
4 https://www.longcovid.org/about/our-charity#advocacy
5 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalnceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2september2021
6 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2february2023
7 https://www.longcovid.org/impact/the-first-ever-data-on-the-effect-of-covid-reinfections-on-people-with-long-covid
8 https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/04/energy-impairment-and-disability-inclusion.pdf
9 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/selfreportedlongcovidandlaburmarketoutcomesuk2022/selfreportedlongcovidandlabourmarketoutcomesuk2022
10 The TUC uses the social model of disability (see the relevant section of the report) meaning we use ‘impairment’ to describe an individual’s physical, sensory, or cognitive differences, and ‘disability’ is caused by barriers in society i.e., being disabled by society. However, the Equality Act 2010 refers to conditions as disabilities. The term disability, rather than impairment, is therefore used in this report when referencing the Equality Act 2010.

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.

1 www.LongCovidWork.co.uk
2 Please see the following documents for further reading on the social model.

Social model of disability: Interactive guide for union reps: https://www.tuc.org.uk/resource/social-model-disability

Trade Unions and Disabled Members: Why the social model matters https://www.tuc.org.uk/sites/default/files/socialmodel.pdf 

The Social Model of Disability

https://www.inclusionlondon.org.uk/about-us/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/

Recommendations

Whilst these recommendations are in response to the research on Long Covid, many would also support people with other energy limiting impairments and are informed by best practice in supporting people with other invisible impairments.

Government

Action by government is urgently needed. Without it, we risk people losing their livelihoods as many are forced out of the labour market when they would like to be working and others who cannot work being left with little support.

In all responses, government should ensure that they engage throughout with disabled people, in particular with groups formed by people with Long Covid to represent the community, such as Long Covid Support and trade unions to ensure that the voices and experiences of people with Long Covid are at the heart of all planned activity. Government should:

1. Ensure that everyone with Long Covid is protected under the law by strengthening the Equality Act 2010 by specifying that Long Covid is a disability

This change to the Act could be achieved by using secondary legislation.11 We believe that this should happen for the following reasons:

We have faced one of the biggest public health crises since the second world war, yet the government has failed to adequately support people facing the long-term consequences of it. Action should be taken to recognise the fact that many people who have Long Covid are key workers who were exposed, and continue to be exposed, to increased levels of risk of Covid-19. Half of respondents in this report said they had reason to believe they contracted Covid-19 at work. Government must ensure that these workers now do not face disabling barriers in workplaces risking their livelihoods.
Many people with Long Covid will already meet the definition of disability under the Equality Act 2010 and are therefore entitled to additional rights and protections from discrimination. However, many people are not receiving the adjustments and support they are entitled due to stigma, disbelief, lack of understanding about Long Covid and the law, and other barriers in workplaces. Decisive action by the government to make Long Covid a named impairment under the Equality Act 2010 would provide a clear message to employers about the protections that people are entitled to.
It would ensure that everyone with Long Covid is protected rather than having to evidence that their condition is likely to last 12 months or more. This is particularly important as ONS data from 2022 finds that reporting Long Covid symptoms 30-51 weeks after being infected increases the odds of inactivity by 40 per cent.12 Quick action to ensure people, who want to, can stay in work in their first year after contracting Covid-19 is therefore needed.

2. Provide access to Disablement Benefit

The Industrial Injuries Advisory Council (IIAC)13 has recommended prescription of a number of long-term symptoms associated with Covid-19; designating it an occupational disease for Health and Social Care Workers who have experienced five named complications. An occupational disease is an illness or a condition that can arise or be caused as the result of unsafe working conditions or exposure to certain substances in the workplace and if prescribed, individuals would be eligible for Industrial Injuries Disablement Benefit (IIDB).

We urge the government to accept the recommendation of the IIAC and in addition recognise Covid-19 as an occupational disease beyond health and social care and those five named complications. This would entitle more front-line workers to protection and compensation if they contracted the virus while working and be essential for people who have lost income and work as a result of Long Covid.

3. Protect people from Covid-19 infection

Protecting workers from Covid-19 transmission protects our health, economy and the NHS: it is in all of our interests and is essential to prevent increasing numbers of people experiencing Long Covid. It requires a commitment from the government to invest in necessary resources, and to call on employers to implement protections. The TUC’s A Better Normal report14 outlines the changes we are demanding in relation to health and safety.15 These include removing the ‘lower earnings limit' on statutory sick pay (SSP) and raising the weekly SSP rate to at least the equivalent of a week’s real living wage (£330 per week), which would also mean people with Long Covid would have enough to live on when they need to rest and recover.

4. Adopt the social model of disability

One way of bringing the social model of disability into the heart of UK law would be to make the United Nations Convention on the Rights of Disabled Persons (UNCRPD)16 directly enforceable within UK law. Fully incorporating the Convention would bring the added benefit of addressing one of the outstanding recommendations of the UNCRPD to the UK on how to improve and make further progress to meet the Convention’s aims.

5. Strengthen flexible working rights

It is likely that many workers with Long Covid are already covered by the disability provisions of the Equality Act 2010, which would mean that they could ask for changes to their working hours or location as a reasonable adjustment. However, as highlighted in our recent reports on flexible working,17 unless the government acts to strengthen rights and ensure that flexibility is the default way of working, there is a real risk of people not being able to access flexible working due to stigma.

This report shows that while flexibility is one of the changes most requested by people with Long Covid, it is one of the least likely to be approved by employers, potentially forcing people out of the workplace. If the government is serious about supporting disabled people, including people with long-term sickness, it must make flexible working a priority. This would benefit disabled people with other impairments too.

The government must introduce a legal right to flexible work for all workers from their first day in a job18 and a duty to include possible flexible working options in job adverts.19

6. Ensure the welfare system is fit for purpose

There is well documented evidence that welfare reforms in the UK have disproportionately impacted disabled people20 and this report provides further evidence that the system is not working for people with energy limiting impairments. We urge the government to listen the millions of disabled people across the UK, including people with Long Covid,21 and urgently look at how the welfare system can be made better for disabled people. Universal Credit is not fit for purpose - it needs reform in line with recommendations set out in the TUC’s report A Replacement for Universal Credit.22

7. A cross-department approach to Long Covid and continuation of data collection

The response to Long Covid will need to include multiple government departments including Department for Business and Trade, Department for Work and Pensions, Department for Education, Department for Health and Social Care and others and therefore a cross cutting approach to Long Covid is needed. Departments, under the Public Sector Equality, must also demonstrate their due regard for advancing equality of opportunity and eliminating discrimination.

The ONS have also recently announced they are pausing the Covid-19 Infection Survey data collection.23 As demonstrated in this report is has contributed to understanding of the high prevalence of Long Covid and the impact on people’s lives. There needs to be continued monitoring of Covid-19 infections, hospitalisations and deaths alongside ongoing monitoring and reporting of self-reported Long Covid symptoms by the ONS.

8. Invest in regulators

Health and Safety Executive (HSE): The last ten years have seen real-term cuts of 50 per cent to the HSE budget to the HSE budget, 24 with local authorities seeing their inspectorate numbers fall. This must be reversed to ensure safety regulators are well-equipped to investigate workplace health risks and take swift action against employers to prevent poor practice.

Covid-19 has further exposed the need for effective, quality enforcement that rewards best practises and punishes those who put people at risk. This means a long-term investment in the HSE’s inspectorate capacity and local authority environmental health teams to allow for fully trained inspectors, infrastructure and resources needed to keep workers safe.

Equality and Human Rights Commission (EHRC): The EHRC should receive additional ring-fenced resources to use the full range of their powers to address discrimination against people with Long Covid.

9. Strengthen reporting mechanisms

The Reporting of Injuries, Diseases and Dangerous Occurrences Regulations 201325 (referred to as ‘RIDDOR’) plays an important role in collecting data on annual and historical levels of work-related injury and fatalities, triggering investigations into occupational safety, ensuring employers follow protocols, and helping safety regulators direct support and enforcement powers.

Employers are no longer obliged to report cases of Covid-19 infection where exposure occurs as a result of a person's work, unless they are working directly with Covid-19 positive patients, for example in health and social care.

Where a worker is exposed to Covid-19 in the workplace due to lack of effective risk controls, for example, poor ventilation, this should remain RIDDOR-reportable. The TUC’s report ‘RIDDOR, Covid and under-reporting’ argues that Covid ‘clusters’, or outbreaks, in a single workplace should prompt an occupational exposure report.26

10. Provide universal access to occupational health

Only half the UK population has access to occupational health (OH),27 despite its known benefits. OH support could play a pivotal role in supporting people with Long Covid back into the workplace, including atypical workers such as freelancers and agency workers. There should be investment in expert OH advice in government, tax incentives so employers can invest in OH, and access to OH for general practitioners.

Occupational health providers should ensure they are well informed with up to date information and guidance, including information produced with the input of people with Long Covid and bodies, such as the Society of Occupational Medicine28 , who develop guidance with people with lived experience.

The Equality and Human Rights Commission (EHRC

11. Produce guidance for employers

Ahead of legislative change specifying Long Covid as an impairment for the purposes of the Equality Act 2010, the EHRC should urgently work with us to produce guidance for employers. Guidance should focus on reasonable adjustments and best practice, providing detailed examples of different reasonable adjustments people with Long Covid may need in different sectors. Guidance would support employers to take preventative measures to ensure workers with Long Covid do not have to leave the workforce, to protect people’s health and also reduce the risk of potential discrimination by employers. This report highlights the types of reasonable adjustments needed, for example, flexibility, disability leave and a more flexible phased return to work.

We welcome the EHRC’s intervention that states employer best practice is to focus on providing people with Long Covid with reasonable adjustments29 and urge them to build on this. In addition, clarification that a tribunal judgement is not needed for people with Long Covid to receive the protections under the Equality Act 2010 has been useful.30 The guidance should remind employers of their duties under the Equality Act 2010 without the need to go to an employment tribunal.

12. Make targeted use of its enforcement powers

Carry out a programme of targeted work with their full range of enforcement powers to work towards eliminating discrimination against workers who have Long Covid. The EHRC should prioritise strategic litigation on Long Covid, including supporting cases which develop case law around disability discrimination and failure to make reasonable adjustments.

13. Continue to work with Long Covid Support and unions

The ongoing dialogue with the EHRC on Long Covid has been welcomed and we ask that the EHRC continue to work with Long Covid Support and trade unions to implement the above recommendations, including guidance, and promote best practice for employers.

Employers

Employers should focus on providing reasonable adjustments to people with Long Covid and removing barriers for them in the workplace.31 This is essential not only to prevent discrimination and negative treatment at work, but also to ensure that work is not worsening people’s symptoms. This should be done in consultation with trade unions and staff who have Long Covid.

LCSEG have co-created and collated guidance for employers to understand how they can support workers with Long Covid.32 This report builds on that evidence and also contains case studies of the types of support people need. Employers should:

14. Review existing policies, in particular flexible working

Workplace policies should be reviewed in light of this report, in consultation with the relevant unions, workers who have Long Covid and disabled workers. Employers should look at their policies and practices in relation to phased return to work, energy-limiting impairments and redeployment. Our report demonstrates that often people will need longer or multiple phased returns to work due to the fluctuating nature of Long Covid.33 Policies should reflect the fact that some workers might take longer to recover from Long Covid while others might never recover fully or return to their previous ways of working.

Our report shows flexibility is key for workers experiencing Long Covid. Flexibility to organise working hours and workload around symptoms, to rest, to work from home when possible and to have time off to attend hospital appointments is essential to long-term sustainability of work. Employers should review policies to ensure flexible working is the default way of working for all.34

15. Put in place reasonable adjustments for workers who have Long Covid

Our report highlights that in addition to a well-designed phased return to work, adjustments once back at work are vital, yet often employers are failing to provide them. Employers should provide reasonable adjustments to anyone experiencing Long Covid and ensure they are implemented in a timely manner and reasonable adjustment ‘passports’ introduced.35 Employers must recognise that Long Covid is an umbrella term for multiple symptoms therefore no two people with Long Covid are the same and may need different adjustments.

16. Record Long Covid related leave separately from sick leave

Employers should record sick leave taken by workers that is connected to Long Covid separately from sick leave or as disability leave; in line with TUC’s guidance on recording sick leave taken by disabled workers. Education unions have produced a joint protocol on Long Covid which includes this.36

Ensure workers with Long Covid have return-to-work risk assessments

Where it is appropriate for workers with Long Covid to return to workplaces, their condition should be factored into risk assessment and individual risk assessments should be conducted. Research indicates that Covid-19 reinfection can potentially worsen symptoms or cause a recurrence of Long Covid symptoms for people in recovery.37

Certain activities may need to be adjusted on account of symptoms, to avoid risk of injury to the worker or others. For example, some safety-critical functions may not be appropriate for an individual suffering fatigue or cognitive dysfunction.38

Trade unions

Unions should work with employers and people with Long Covid to enact the recommendations outlined above on health and safety, flexible working and other policies to ensure that workers with Long Covid are not discriminated against. Unions should train and develop caseworkers on the strategic use of litigation to tackle all forms of discrimination including Long Covid cases particularly employer failure to provide reasonable adjustments. This will build case law and develop understanding.

Union reps: Unions should use this report and other resources (listed below) to increase their reps’ and members' understanding of Long Covid. There are multiple ways reps can support members to get reasonable adjustments, tackle discrimination, remove barriers in workplaces, and advocate health and safety. Given the fatigue and cognitive dysfunction people may be experiencing, accompanying members to meetings, taking notes, recording decisions and making sure agreements are provided in writing becomes even more important.

This report focuses on recommendations in connection to employment, but we recognise the difficulties that people with Long Covid have accessing healthcare support, as many people with invisible impairments do. Proper resourcing of care and early intervention is needed and can support people to work where this is possible, and they want to return. Long Covid Support39 is involved in such advocacy.