Workers’ experiences of long Covid
In every sphere of life across the UK for over a year the impacts of Covid-19 have been massive. However, as we edge nearer the date where the final level of government restrictions will be lifted there are indications that Covid-19 could have a far longer effect. As well as the economic impact of the pandemic which will be felt for years to come, evidence is showing that long Covid is affecting increasing numbers of people. The Office for National Statistics (ONS) has found that in May 2021 around one million people in the UK were affected by Covid- 19 symptoms that lasted longer than four weeks. Nearly two-thirds of these people reported experiencing a negative impact on their day-to-day activities. People of working age are among the groups most likely to be affected.
There has rightfully been increasing attention on long Covid and the impact that it is having on people’s lives but very little of this discussion to date has focused on the workplace. We, therefore, conducted an online survey to better understand workers’ experiences and make evidence-based recommendations. Over 3,500 people who had had Covid-19 responded: around 3,300 of whom self-reported having long Covid. The majority of these were key workers (79 per cent); people who faced higher levels of exposure to Covid-19 while keeping the country running during the pandemic.
Almost three in 10 respondents (29 per cent) had been experiencing long Covid symptoms for 12 months or more. This length of time is significant because in order to be protected under the disability provisions of the Equality Act 2010, a person has to have a condition that has a substantial and long-term impact on their ability to do normal day-to-day activities. Long term is usually taken to mean 12 months or more. Disabled people are protected by the Equality Act from discrimination, harassment and victimisation. Employers also have a duty to take steps to make sure that disabled people can access jobs as easily as non-disabled people: known as the duty to make reasonable adjustments. Reasonable adjustments can include flexible working arrangements, longer rest breaks, specialist software or equipment. It is clear from our findings that workers with long Covid urgently need this protection, whether they have had symptoms for 12 months or not.
Workers reported experiencing a range of symptoms. On average each respondent reported having nine of the 21 long Covid symptoms we asked about and described the severity of their cumulative impact. Nine out of ten respondents experienced fatigue, with other common symptoms centred around problems with brain fog (72 per cent), shortness of breath (70 per cent), difficulty concentrating (62 per cent) and memory problems (54 per cent). Over four in five respondents (83 per cent) reported experiencing at least one of a range of pain-related symptoms with around one third (32 per cent) experiencing depression.
Respondents also described the poor treatment that they experienced at work because they had long Covid. Over half (52 per cent) had experienced some form of discrimination or disadvantage. Workers were faced with disbelief and suspicion, with around one fifth (19 per cent) having their employer question the impact of their symptoms and one in eight (13 per cent) facing questions from their employer about whether they had long Covid at all. Respondents were also concerned about what the future might hold for them at work given the amount of sick leave they had been forced to take due to their long Covid symptoms. For around one in six respondents (18 per cent), the amount of sick leave they had taken had triggered absence management or HR processes and one in 11 respondents (9 per cent) had used up all of their sick leave and had been told there would be negative consequences if they took more. One in 20 respondents (5 per cent) had been forced out of their jobs because they had long Covid.
Trade unions have worked throughout the pandemic to keep workplaces safe and protect workers. We have challenged employers and the government over inadequate sick pay that makes it difficult for low paid workers to self-isolate, failures to provide adequate personal protective equipment (PPE) and testing, and the urgent need for investment in safety regulation and enforcement.
Unions have played a major part in keeping workers who have contracted Covid-19 at home and not in the workplace and protecting those at higher risk. Thousands of union health and safety reps have spent more hours each week carrying out their role compared to previous years, some doing so in their own time. Unions have also worked to recruit and train more safety reps, with approximately 110,000 now in workplaces across Britain.
It is clear from our findings that too many workers have been and continue to be failed by their employers. Several workers described contracting Covid-19 at work, with some expressing the anger they felt at the inadequate provision of personal protective equipment (PPE) and lack of attention to other safety measures which they felt had led to transmission. The fact that they now face negative treatment from the same employers because of their long Covid symptoms, adds another layer of injustice to their experience.
A public inquiry is urgently needed to ensure that we never repeat the failures that shaped the experience of frontline workers during the pandemic. This must include examination of the experiences of workers with long Covid. A recommendation by the Industrial Injuries Advisory Council on Covid-19 prescription is also expected: this recognition could provide workers with financial support and assistance in pursuing claims.
Covid-19 has exposed huge inequalities in the world of work. However, if we do not take steps now to ensure that workers with long Covid are properly protected, we run the very real risk of new, long lasting inequalities being created.
Recommendations
Government
In all responses to long Covid, government should ensure that they engage throughout with disabled workers, in particular those with long Covid and their trade unions and ensure that the voices and experiences of disabled people are at the heart of all planned activity.
Government should:
1. ensure that disproportionate impact of Covid-19 on different groups of workers - including those with long Covid symptoms - is included within an independent public inquiry
Alongside scrutinising the quality of decision-making across the pandemic response in government, the public inquiry must look at some of the unequal and long-term impacts on different groups of workers, including Black and Minority Ethnic workers and those in insecure occupations among whom Covid-19 mortality rates are disproportionately higher. This should include an examination of the impact of long Covid - which this report shows has impacted on large numbers of key workers - and the kind of support those workers have received as a result.
The inquiry must also examine the impact of the failure to provide frontline workers with adequate personal protective equipment (PPE).
We believe the voices of workers and the families of those who contracted the virus at work must be heard through the public inquiry into the government's handling of the Covid-19 pandemic that the Prime Minister announced in May. This will be central to understanding what went wrong and learning lessons for the future.
2. strengthen the Equality Act 2010 by specifying that long Covid is a disability
This could be achieved by using secondary legislation.
The TUC believes that this should happen for the following reasons:
· This would be a way of society recognising the unprecedented risks and sacrifices made by many workers during the pandemic, and ensuring that we offer protection to those whose health has been seriously damaged. The Covid-19 pandemic is an unprecedented and tragic health crisis which has impacted us all. However, our research suggests that the burden of the pandemic has been shouldered unequally, reflecting existing fault lines of inequality across our society. In addition, many workers who now have long Covid are the key workers who were exposed to increased levels of risk during the pandemic as they continued to care for us and to protect, feed and deliver goods to us. We must now ensure that these workers do not suffer a double burden of discrimination and risk to their livelihoods.
· Long Covid is a condition which at times might not manifest itself in physical symptoms, but at other times may do. Even when there is no physical effect, there may still be the potential for discrimination against workers with long Covid. For example, there may well be stigma attached to the condition. An employer who is made aware that a worker has long Covid may make an assumption that that worker cannot take on a promotion or cannot continue to work. In this way, we are of the view that long Covid is akin to other conditions deemed to be a disability.
3. 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) enforceable within UK law.
Fully incorporating the Convention would bring the added benefit of addressing one of the outstanding recommendations the UNCRPD to the UK on how to improve and make further progress against the Convention’s aims.
4. provide access to Disablement Benefit
The Industrial Injuries Advisory Council (IIAC) is considering prescription of Covid-19 as an occupational disease in certain sectors. An industrial 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. If a decision, based on relevant data, is made to prescribe the illness in certain occupations, long Covid patients should be made eligible to apply for Industrial Injuries Disablement Benefit (IIDB).
5. increase and expand statutory sick pay
The weekly SSP rate must be permanently raised to at least the equivalent of a week’s real living wage (£330 per week) and the lower earnings limit must be scrapped. This would guarantee that everyone who has to take time off work when sick would still at least be paid enough to live on.
6. overhaul Universal Credit so it is fit for purpose
We found that one in 20 respondents had been forced out of their job due to long Covid. Others may not be able to continue working given the severity of their symptoms. For those who cannot work because of long Covid the benefits system fails to provide adequate support. It needs an emergency overhaul to make it fit for purpose in line with recommendations set out in our earlier report on ‘The impact of the pandemic on household finances.’
7. 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 flexible working as a reasonable adjustment rather than having to rely on other workplace rights. However, as highlighted in our recent report on flexible working, unless government acts to strengthen rights and ensure that flexibility is the default approach in a workplace, there is a real risk of stigma and discrimination associated with flexible working patterns.
The government must introduce a legal duty on employers to consider which flexible working arrangements are available in a role and publish these in job advertisements, with the new postholder having a day one right to take up the flexible working arrangements that have been advertised. If an employer does not think that any flexible working arrangements are possible, they should be required to set out the exceptional circumstances that justify this decision.
And they must introduce a day one right to request flexible working for all workers, with the criteria for rejection mirroring the exceptional circumstances set out above. Workers should have a right to appeal and no restrictions on the number of flexible working requests made
8. invest in regulators
HSE: The last ten years have seen real-term cuts of 50% to the HSE budget, with local authorities seeing their inspectorate numbers fall, too. 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 workers 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.
EHRC: The EHRC should receive additional ring-fenced resources to use the full range of their powers to address discrimination against workers with long Covid.
9. provide universal access to occupational health
Only half the UK population has access to occupational health (OH), despite its known benefits. Occupational health support could play a pivotal role in supporting workers with long Covid back into the workplace. There should be investment in expert OH advice in government, tax incentives so employers can invest in occupational health, and access to OH for GPs.
The Equality and Human Rights Commission
The Equality and Human Rights Commission should:
10. produce guidance for employers
Ahead of legislative change specifying long Covid as a disability for the purposes of the Equality Act 2010, EHRC should produce guidance for employers. This should be drawn up in conjunction with people with long Covid and set out the steps that employers can take to ensure workers can retain their jobs and return to work in a way that promotes their wellbeing. This guidance should highlight the different steps an employer can take to remove barriers preventing those with long Covid symptoms, including energy limiting impairments, from getting a job and thriving at work.
11. 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.
Employers
Employers should not wait for the government to specify that long Covid should automatically be considered as a disability for the purposes of the Equality Act 2010. They should act as if all staff with long Covid already have the full range of protections afforded by the Act, including putting in place reasonable adjustments.
Employers should also take the following actions.
12. review existing policies
Workplace policies should be reviewed in light of this report, in consultation with the relevant unions, workers who have long Covid and disabled workers to ensure that the policies appropriately address the needs of workers who have long Covid and take them seriously.
Employers should, in particular, look at their policies and practice in relation to phased return to work and energy impairments, taking into account the fluctuating nature of long Covid. Policies should reflect the fact that some workers might take a long time to recover from long Covid while others might never recover fully or return to their previous ways of working.
13. consult with trade unions and staff that have long Covid on steps to promote equality and eliminate discrimination
Employers should consult with trade unions and their staff who have long Covid on the best way to remove the workplace barriers that workers with long Covid face, recognising that they, and the trade unions that represent them, should be able to determine the solutions to the issues they face.
14. put in place reasonable adjustments for workers who have long Covid
Employers should ensure all reasonable adjustments are implemented in a timely manner.
15. record long Covid related leave separately from sick leave
Employers should record sick leave taken by workers who have Long Covid that is connected to long Covid separately from sick leave that is unconnected to this; in line with TUC’s guidance on recording sick leave taken by disabled workers, this would recognise that some workers who have long Covid may have different and higher forms of sickness absence.
16. review existing flexible work policies
In consultation with recognised trade unions, employers should review existing policies and make flexible working the default.
17. 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 management, ideally conducting an individualised risk assessment. Certain activities may need adjustment 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 so-called ‘brain fog’.
Trade Unions
Unions should:
18. work with employers to review their policies and practices to ensure any barriers workers with long Covid face at work are identified and removed.
19. negotiate with employers for long Covid to be automatically treated as a disability so that employers put in place reasonable adjustments to remove workplace barriers and record absence linked to long Covid separately from other sick leave.
20. use the findings in this report to campaign to increase their reps’ and members’ understanding of long Covid so workers are better able to seek help if they need it.
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