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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
Section 1: Background - relevant legislation and experiences of disabled people

Disability provisions in the Equality Act.

Disabled people are protected by the Equality Act 201049 from discrimination in employment and a range of other areas including education, provision of services and transport. All employers have a legal duty under the Equality Act 2010 to proactively make reasonable adjustments to remove, reduce or prevent any disadvantages that disabled workers face. The Equality Act 2010 protects people from discrimination so it is not applicable only to employees as some employment law is.  

The Equality Act defines disability as a “physical or mental impairment…[that] has a substantial and long-term adverse effect on [their] ability to carry out normal day-to-day activities”.50 Government guidance makes clear that 'substantial' means more than minor or trivial and if you are having treatment for the condition this is discounted; the impact is without treatment or medication. 

'Long-term' means the effect of an impairment has lasted for at least 12 months, is likely to last for at least 12 months or is likely to last for the rest of the life of the person affected. In addition, likely means ‘could well happen’51  and day to day activities are things people do on a regular or daily basis with examples given such as shopping, reading or writing.

The guidance also highlights the importance of considering the cumulative impact of multiple impairments that a person might have and states that even if individual impairments might not have a substantial impact if considered in isolation “account should be taken of whether the impairments together have a substantial effect overall on the person’s ability to carry out normal day-to-day activities”.52 In addition, there is specific guidance on recurring or fluctuating conditions stating that if the impacts of an impairment cease but are likely to reoccur, they will be treated as continuing to have that effect.

Some disabilities, for example HIV, cancer and multiple sclerosis are named disabilities and are automatically covered by the Equality Act 2010 meaning workers benefit from the disability provisions within the Act from the point of diagnosis.53

Whether someone with Long Covid is deemed disabled under the Act and therefore entitled to the protections, will therefore, as with any other impairment (other than those named in the Act), be dependent on whether they meet the definition outlined. As Long Covid is a new condition there has been confusion about this, so it is important to remember that employers have the same duties under the law as they do to other disabled people.

Under the Act there are six main types of discrimination that disabled people are protected from. They are direct discrimination, indirect discrimination, failure to make reasonable adjustments, discrimination rising from a disability, harassment and victimisation.54

The EHRC has recommended that to support someone with Long Covid and avoid inadvertent discrimination, employers should follow the existing guidance on reasonable adjustments and access to flexible working55  and best practice is to focus on providing reasonable adjustments and support to the person experiencing symptoms.56

It is important to note that a medical diagnosis of Long Covid is not needed to meet the definition as the focus is on the impact of the impairment. 57

There has been debate on whether someone with Long Covid needs to take a case to an employment tribunal to demonstrate if they are entitled to disability protections under the Equality Act 2010.58  We welcome clarification from the EHRC that a tribunal judgment is not needed for an employer to provide support and Long Covid will count as a disability for a particular person if their condition meets the Equality Act definition.59  Confusion over this is important to clarify as it could result in employers believing that a tribunal case is required before they make any adjustments for workers with Long Covid – this would be a unique and unjustified exception to the Equality Act 2010 and is not correct.

Tribunals are a last line of defence and form of recourse for when a worker has been treated unlawfully, not a route to be treated lawfully in the first place. In addition, whilst tribunals are an important form of justice there are a significant number of barriers in taking a case to tribunal for all workers, let alone someone experiencing the symptoms of Long Covid.

If a case were to end up at a tribunal, it is the definition under the Act that would be used in making a judgement on whether disability discrimination has occurred. There have now been employment tribunal judgements where the claimant with Long Covid was deemed to be disabled.60

The duty to make reasonable adjustments.

The Equality Act 2010 recognises that to bring about equality for disabled people, changes or adjustments to workplaces or working arrangements may be needed. This is the duty to make reasonable adjustments.61  The duty means that disabled people can be treated more favourably in order to reduce workplace disadvantage.

Reasonable adjustments are changes to work environment or to a workplace policy, process, criteria or practice that removes or reduces disadvantage that disabled people face at work. They could include for example changes to someone’s working arrangements like their hours or location, providing equipment, making physical changes or findings a different way to do this. This report outlines the reasonable adjustments that people with Long Covid may need, but everyone's’ adjustments are individual, and can cover any area of work.

Employers have a duty to provide reasonable adjustments when they know or could reasonably be expected to know someone is disabled. They must provide them to employees, workers, contractors, self-employed people, trainees, apprentices and job applicants. Reasonable adjustments are a day one right and what is reasonable depends on each situation. But if an employer fails to make a reasonable adjustment, a person could make a disability discrimination claim to an employment tribunal.

Social model of disability

This report has outlined the legal protections that people with Long Covid are entitled to. Another way to support people is the use of the social model of disability, which the TUC and Long Covid Support endorse 62 . The social model is endorsed by the UNCRDP and is an alternative to the medical model of disability, on which the Equality Act 2010 is based.

The social model of disability 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.

The government and employers adopting the social model 63  is vital to support people with Long Covid symptoms as it focuses on removing barriers that people experience which prevent them from working well. The government should also move away from the medical approach to disability as set out in the Equality Act 2010 and adopt the social model of disability as outlined in the recommendations of this report by implementing and directly incorporating the UNCRPD into domestic legislation.

Treatment of disabled people with energy-limiting impairments

In seeking solutions to the negative experiences of people with Long Covid at work, it is vital to ground all solutions in the lived experiences and preferences of people who have Long Covid. However, it is also important to reflect on the previous experiences of disabled workers with energy limiting impairments, such as severe fatigue. It is estimated that around 250,000 people in the UK experience myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).64

ME or CFS is a long-term, fluctuating, neurological condition that causes symptoms affecting the nervous and immune systems. People with ME/CFS experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise. This is the body and brain’s inability to recover after expending even small amounts of energy. Not everyone will experience the same symptoms. Reports and data about Long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as ME/CFS.

Workers with energy impairments have faced widespread discrimination and disbelief at work. Scepticism about the existence and extent of energy impairments like ME/CFS is widespread as highlighted in a report by Chronic Illness Inclusion65  which stated that “negative perceptions and misunderstandings around ‘fatigue’ and chronic illness create formidable yet unnecessary barriers to work. The widespread notion that fatigue is not a real disability stands firmly in the way of disability equality in work. Systemic disbelief of energy impairment affects disability disclosure and access to reasonable adjustments, and contributes to strained employment relations, sometimes causing unnecessary departure from the labour market.”

The parallels between workers with other energy limiting impairments and Long Covid are clear. Going forward it is imperative employers understand energy impairments and learn the lessons from experiences of people with ME/CFS and Long Covid and vice versa, so that appropriate reasonable adjustments are put in place for workers.

Social security

Our survey includes questions on what financial support respondents were accessing, including whether they were accessing support from the Department for Work and Pensions (DWP). Having a diagnosis of Long Covid does not necessarily lead to social security entitlement. There are different financial entitlements (income-related and contribution-based) that working age people in the UK may be eligible to apply for. Eligibility criteria is specific to each benefit and can include, for example, the nature of a person’s impairment and, or health condition, partner status and living arrangements, having dependent children, financial circumstances, and current and recent past work situation. 

People with Long Covid have reported challenges in applying for DWP support, particularly about the required medical assessments. Long Covid Support have raised such concerns and concluded that the current assessment processes are not fit for purpose.66 Many people with Long Covid have been failed by the DWP and not received a timely and fair assessment outcome and are therefore having to undertake the appeal process.

A key social security entitlement that is likely to be applied for by people with Long Covid is personal independence payment (PIP) in England and Wales and recently changed to adult disability payment (ADP) in Scotland. Both PIP and ADP are designed to support people with the costs of living with an impairment or health condition.  There are different levels of eligibility awards for these entitlements, standard and enhanced for the activities of daily living and mobility components. PIP and ADP are both available to people whether they are in work or not working and are not means tested as employment support allowance (ESA) or universal credit (UC) are. 

Other key entitlements that people with Long Covid may be claiming include UC67 which individuals on a low income, out of work or who cannot work may be eligible for and ESA which is paid to people if their impairment or health condition affects how much they can work. For UC, PIP and ESA, people are typically asked to undertake a medical assessment.

A section on industrial injuries disablement benefit is included later in this report.  

 
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