The Human Rights Implications of Long Covid in Social Care

Guest blog post by Eilidh Anderson, University of Glasgow.

This post is part of a series of guest blog posts written by PhD researchers and SHRC’s LLM Human Rights Dissertation Placement Student who took part in our Human Rights Research Knowledge Exchange Showcase last year.

The Unspoken Issue in Sickness Absence

The United Kingdom (UK) has the highest sickness absence in over a decade, with 2.8 million people out of work due to long-term sickness, classified as absent for over 4-weeks (House of Commons Library, 2024). In Scotland, 34% of economically inactive people were unemployed due to long-term sickness or disability, the highest number since 2004 (Scottish Government, 2025). This begs the question: why are people off sick and are organisations dealing with sickness absence effectively? In response to rising sickness absence, the Labour Government has announced a tightening of the eligibility criteria for Personal Independence Payment, and a reduction in Incapacity Benefit for people who classify as unfit to work (DWP, 2025). These changes impact future claimants, including people with new and emerging illnesses that are not well understood. A condition largely missing from sickness absence debate is Long Covid (LC). LC is a multifaceted, fluctuating, and long-lasting condition that severely impacts people’s ability to conduct activities of daily living (TUC & LC Support, 2023). The invisibility of LC is due to a loss of collective memory of post-viral illnesses. For instance, similar symptoms from previous pandemics like the Russian/Spanish flu, Ebola, and severe acute respiratory syndrome (SARS) have largely been forgotten (Staub et al., 2024). The Institute of Fiscal Studies (2022) estimates that 110,000 UK employees were absent with LC between 2020 and 2022. The economic cost of this workplace absence is estimated to equate to £1.5 billion lost per year. In Scotland, the unemployment rate for people with LC is four times higher than the general population (Long Covid Scotland, 2022).

LC impacts frontline occupations, like social care, an already understaffed and underfunded occupation, with vacancies three-times higher than the national average (Black et al., 2023). As of May 2021, 31,000 social care workers in the UK reported having LC (NHS England, n.d.). Many more are expected to develop LC as the risk of developing the condition increases with each Covid-19 infection (Davis et al., 2023). LC poses a particular threat to the social care workforce that consists of people more likely to develop LC. This is because the workforce is female-dominated and more disabled/chronically ill than the general population (Black et al., 2023).  The poor working conditions, insecure contracts, low pay, and requirement for in-person participation at non-negotiable times leaves carers exposed to sickness absence and return-to-work barriers. These conditions compromise carers’ human rights and the rights of people they care for (Black et al., 2023).

Legislative and Human Rights Gaps

Unlike Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Human Immunodeficiency Virus (HIV), LC is not officially classified as a ‘disability’. This means that some cases are not formally recognised as a disability (The ME Association, 2022).  Instead, LC is judged on a case-by-case basis through employment tribunals that can be disabling to undergo (TUC, 2021; TUC & LC Support, 2023). This is despite LC aligning with the Equality Act (2010)(2010) definition of disability as a physical or mental impairment that lasts at least 12 months with substantial impact to activities of daily living. (TUC, 2021; TUC & LC Support, 2023)(TUC, 2021; TUC & LC Support, 2023). Unlike other countries (i.e., US, France), the UK has not classified Covid-19 or LC as an ‘occupational disease’. This prevents people unemployed due to Covid-19 from accessing compensation like Industrial Injuries Disablement Benefit (TUC, 2022)(TUC, 2022). Such conditions contradict the Trade Union Congress (2022)(2022), the British Medical Association (2023)(2023) and the Royal College of Nursing (2023)(2023) who cite LC as a risk to the social care workforce.

The fact that LC is not classified as an official disability means it is not necessarily seen as a protected characteristic under Human Rights Conventions. For instance, the European Convention on Human Rights (1950) Article 14 prohibits discrimination among protected characteristics under the Equality Act. Furthermore, without classification of LC as a disability, articles under the Convention on the Rights of Persons with Disabilities (2006) and the Universal Declaration of Human Rights (UDHR) (1948) Article 22 Right to Social Security in times of disability could be overlooked. Failing to recognise LC as a disability disadvantages people with LC who could benefit from Equality Act (2010) entitlements, including the right to reasonable adjustments (i.e., flexible working, assistive technology). Overlooking LC as a qualifying condition is a form of structural discrimination that effectively excludes a significant group of disabled people from accessing support. This type of discrimination is directed towards a particular group, namely disabled women, contravening articles in the Convention on the Elimination of All Forms of Discrimination Against Women (1979).

The failure to classify LC as an occupational disease reduces requirements for risk assessments and reporting exposures to Covid-19 at work (TUC, 2022). This prevents employers from fulfilling their duty to provide a safe working environment. These conditions are not conducive to creating sustainable working practices that protect people from unemployment.  Furthermore, they undermine the Right to Just and Favourable Conditions of Work and Protection Against Unemployment under the UDHR (1948) Article 23, Right to Work.

Oversights in legislative protections against LC intervenes with the Scottish Government’s (2022) Fair Work strategy that aims to create ‘a fairer, more equitable workforce’ by 2025. They aim to do so by reducing employment barriers for women and disabled people (The Scottish Government, 2022) . Prior to the pandemic, the Fair Work Convention (2019) stated that the social care sector was not delivering fair work due to lack of effective worker voice and existing funding systems. Since the pandemic, staffing pressures have intensified, and workers with LC experience limited protections against discrimination to secure and maintain employment. Unfortunately, the Trade Union Congress (2021, 2023) has already reported an increase in discrimination of employees with LC. For example, 1 in 7 people with LC lost their job, two-thirds faced unfair treatment at work, and nearly half received little or no workplace adjustments.

Body Mapping: A Tool for Human Rights Advocacy

Human rights are an underutilised yet crucial framework for advocating for better support for carers with LC. The Scottish Human Rights Commission (2024) promotes human rights through the PANEL principles. This section will use the PANEL principles (Participation, Accountability, Non-Discrimination and Equality, Empowerment, Legality) to discuss the novel, participatory research method of body mapping. It will argue that body mapping aligns with the PANEL principles as it can counteract the invisibility of LC, making visible the symptoms and workplace harms experienced by carers. Body mapping originates in the Global South and has been previously used to raise awareness of the emerging illness of HIV and investigate human rights abuses (Jager et al., 2016). The method requires participants to draw their bodies and upon them to map their symptoms, external influences affecting their bodies, and sources of support (Gunn, 2017).

Body mapping fits with a human rights framework because it places ‘participation’ and ‘accountability’ at its centre. It allows carers with lived experience to decide what they want to share. The recorded evidence can then be used to hold duty bearers (that is, those responsible for enforcing legislation) to account. Such an approach investigates why principles of ‘non-discrimination and equality’ often fail to translate in workplaces. The method also has the potential to  ‘empower’ workers in recognising their own human rights. Body maps can act as a springboard for discussions of ‘legality’ between rights holders and duty bearers, where the lived consequences of legislative gaps and failed human rights obligations come into focus. By centring workers voices, the method foregrounds previously unheard stories from women in caring roles.  This can make visible the diverse and largely invisible impacts of LC and challenge the invisibility of care work which often takes place behind closed doors.

References

Black, B., Pearson, P., & Ferrie, J. (2023). “The opportunity is now”: Human rights in health and social care in Scotland: where we’ve been and the journey ahead.

British Medical Association. (2023, November 17). BMA and RCN urge Government to take urgent first steps to recognising Long Covid as an occupational disease.

Council of Europe. (1950). European Convention on Human Rights (ECHR).

Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology, 21(3), 133–146.

Department for Work and Pensions. (2025). Pathways to Work: Reforming Benefits and Support to Get Britain Working.

Fair Work Convention. (2019, February 26). Fair Work in Scotland’s Social Care Sector 2019.

Gunn, S. (2017). BODY MAPPING FOR ADVOCACY: A Toolkit.

House of Commons Library. (2024, April 25). Economic update: Inactivity due to illness reaches record. UK Parliament.

Institute for Fiscal Studies (IFS). (2022). Long COVID and the Labour Market.

Jager, A. de, Tewson, A., Ludlow, B., & Boydell, K. (2016). Embodied Ways of Storying the Self: A Systematic Review of Body-Mapping. Orum Qualitative Sozialforschung Forum: Qualitative Social Research, 17(2).

Long Covid Scotland. (2022). Long Covid Scotland: Employment Survey Report.

NHS England. (n.d.). Supporting colleagues affected by Long COVID. Retrieved November 22, 2024

Royal College of Nursing. (2023, November 17). Long COVID: RCN demands action from UK government.

Scottish Government. (2025, April 30). Scotland’s Labour Market Insights: April 2025.

Scottish Human Rights Commission. (2024). A human rights based approach: an introduction.

Staub, K., Ballouz, T., & Puhan, M. (2024). An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond). Public Health Reviews, 45.

The ME Association. (2022, June 13). The Guardian: UK doctors with Long Covid say they have been denied disability benefits. ME Association .

The Scottish Government. (2022a, December 9). Fair Work action plan: becoming a leading Fair Work nation by 2025.

The Scottish Government. (2022b, December 9). Fair Work action plan: becoming a leading Fair Work nation by 2025.

Trade Union Congress (TUC). (2022). Covid occupational disease.

Trades Union Congress (TUC). (2021). Workers’ experiences of long Covid A TUC report.

Trades Union Congress (TUC), & Long Covid Support. (2023). Workers’ Experiences of Long Covid.

UK Government. (2010). Equality Act 2010: guidance.

United Nations. (2006). Convention on the Rights of Persons with Disabilities (CRPD) .

United Nations General Assembly. (1948). Universal Declaration of Human Rights (UDHR).

United Nations General Assembly. (1979). Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW).