Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID

Abstract

The UK government's recent announcement that the highly controversial Work Capability Assessment (WCA) will likely be abolished leaves questions of what precisely will emerge in its place. This commentary revisits a construct central to the attempted justification of the WCA, that of ‘common health problems’, which may well continue to leave a legacy in delineating purported ‘deserving’ and ‘undeserving’ impairment, ill-health and related disability. After outlining the politically strategic application of this construct in social policy, concerns are raised for long Covid. In particular, the risk of long Covid following the trajectory of another post-infection diagnosis, myalgic encephalomyelitis / chronic fatigue syndrome, is discussed.

Keywords

biopsychosocial model common health problems long covid myalgic encephalomyelitis / chronic fatigue syndrome welfare reform

Introduction

The recent publication of the UK government's Health and Disability White Paper (Gov.Uk, 2023a) includes a proposal to abandon the controversial Work Capability Assessment (WCA). Whilst well documented elsewhere, it should be reiterated that the WCA has been associated not only with inaccuracy, with approximately half of appeals upheld (Shakespeare et al., 2017), but also with distress, destitution and suicides among disabled people, alongside a sharp rise in disability hate crime (Garthwaite, 2014; Mills, 2018; Stewart, 2016, 2019, 2022). Whilst the proposed abolition of this assessment might ostensibly appear to be a welcome move, it is not clear whether the envisaged replacements will offer any form of improvement. Indeed, disabled activists and allies have raised numerous concerns, with suggestions that proposals, like previous reforms, are a smokescreen for government intentions 'to cut support and force sick and disabled people into inappropriate work' (Pring, 2023; also see Jenkins, 2023). To add context to these concerns, it is important to note that the WCA is informed by a widely critiqued corporate variant of biopsychosocial model adopted by US insurance company Unum in managing income protection claims (Stewart, 2022). Whilst this model originally sought to provide a more holistic alternative to the biomedical model by acknowledging biological, psychological and social influences in health and illness, it has been manipulated by professional and political interests in the disability arena (Shakespeare et al. 2017; Hunt, 2022a). This has resulted in inaccurate and harmful representations of particular health conditions, as will become clear.

Amongst concerns is that, under White Paper proposals, the most chronically ill and disabled people who are unable to work will need to receive Personal Independence Payment (PIP) disability benefit (or its predecessor Disability Living Allowance) to qualify for extra financial support via a new ‘health element’ of Universal Credit (Gov.Uk, 2023a; Pring, 2023). However, the PIP assessment, informed by the same corporate-sponsored biopsychosocial model as the WCA (Clarke et al., 2019), has also been problematised for lack of accuracy, dehumanising and intimidating assessments, loss of independent living aids and concomitant distress (Saffer et al., 2018; Stewart, 2019). To qualify for PIP, impairment should have persisted at least 3 months and be expected to continue a further 9 months, raising issues for poorly understood or novel health conditions such as long Covid (Pring, 2023; also see Gov.Uk, 2023b). Additionally, the government's announcement that the WCA may be replaced by a ‘personalised health conditionality approach’, possibly including ‘mandatory work-related requirements’ (Gov.Uk, 2023a), should raise concern for those familiar with the ongoing plight of disabled people under increased conditionality, psycho-coercive strategies and harsh yet ineffective sanctions (Clarke et al., 2019; Garthwaite, 2014; Stewart, 2016, 2019, 2022). Auguring ill in this regard is the recent 2023 Autumn Statement (Gov.Uk, 2023d), which confirmed that the government will ‘strengthen’ existing Universal Credit sanctions, including removal of right to prescriptions and legal aid alongside benefits cuts for those who ‘continue to disengage’. Of particular concern with the proposed abolition of WCA, disabled and chronically ill people with greatest need would rely on Jobcentre work coaches to determine capacity for work-related activities (Gov.Uk, 2023a). Finally, the Chancellor's reference to ‘mental health and musculoskeletal’ conditions as a focus for increased back-to-work support, both in the 2023 Spring budget speech and Autumn Statement (Gov.Uk, 2023c, 2023d), is eerily redolent of the politically strategic application of ‘common health problems’ (CHP) in the context of social policy (Shakespeare et al., 2017; Faulkner, 2016; Hunt, 2022a, 2022b).

In this brief contribution, the construct of CHP as a means of designating alleged undeserving health conditions (Shakespeare et al., 2017) is re-visited and re-considered within the context of what might be considered the template CHP after back pain: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) (Faulkner, 2016; Hunt, 2022a). Concerns are raised for the future positioning of long Covid, as a newcomer to the disability and chronic illness arena with parallels to ME/CFS, within this hostile policy landscape.

‘Common health problems’

The construct of common health problems appears to have entered the UK social policy arena through the work of the Cardiff University Centre for Psychosocial and Disability Research (Waddell and Burton, 2004, 2006; Waddell and Aylward, 2005, 2010). The Cardiff centre, for some time sponsored by US insurance company Unum, produced research that played a key role in UK welfare reforms. Much of this research was commissioned by the Department of Work and Pensions (DWP) and espoused a corporate variant of biopsychosocial model elsewhere referred to as the Waddell-Aylward biopsychosocial model (Shakespeare et al., 2017; also see Rutherford, 2007; Stewart, 2016, 2019). Central to this work was Gordon Waddell, a surgeon with an interest in back pain who served as honorary professor at the Cardiff centre. Equally central were Kim Burton, an osteopathically-trained occupational health expert, and Mansel Aylward, director of the Cardiff centre and former Medical Advisor, Medical Director and Chief Scientist at the DWP. CHP arguably formed an important part of the rationale for the 2006 Welfare Reform Bill, the 2007 Welfare Reform Act and the WCA (introduced in 2008), as will be explained in what follows. As documented elsewhere, but important to repeat, alliances already existed at this timepoint between the UK government and Unum, who shared similar objectives of reducing welfare expenditure on sickness benefits and countering loss of profits in the income protection sector, a problem attributed to increasing claims by people with ‘subjective’ health complaints (Rutherford, 2007; Stewart, 2016, 2019, 2022; Faulkner, 2016). The construct of CHP would continue to foster these alliances, additionally adding the weight of psychiatric influence into the mix.

As recounted by Shakespeare et al. (2017), the Cardiff research centre associates posit that workers’ compensation and social security benefits were originally designed for people with ‘severe medical conditions’, defined as permanent and objectively evidenced impairment such as blindness and amputation (Waddell and Burton, 2004; Waddell and Aylward, 2005, 2010). In contrast, CHP are considered to be 'similar in nature and sometimes even in degree to the bodily and mental symptoms experienced at times by most adults of working age' (Waddell and Aylward, 2010: 6). These ‘symptoms’ are said to account for the majority of sickness absence, early retirement, long-term incapacity, income protection and sickness benefit claims, alongside disproportionate use of biomedical care (Aylward, 2010; Waddell and Aylward, 2005, 2010). Common health problems are further defined as mild to moderate mental health, musculoskeletal and cardio-respiratory conditions that represent subjective health complaints, with 'limited evidence of objective disease or impairment' (Waddell and Burton, 2004: 7). Importantly, it is argued that incapacity is not inevitable with common health problems, and that this cluster of health conditions are ‘potentially remediable’ via rehabilitative interventions (Waddell and Burton, 2004; Waddell and Aylward, 2005, 2010). More specifically, it is alleged that ‘personal/psychological’ factors such as personal responsibility, motivation and effort play a key role in perpetuating CHP, that 'obstacles to recovery are often predominantly psychosocial in nature rather than the severity of pathology or impairment' (Waddell and Burton, 2004: 7). This framing promotes individualistic psychosocial rehabilitative interventions such as cognitive-behavioural approaches, recognised in some of the Cardiff centre's output as a route back to work and health. In fact, the Cardiff centre's conviction of ‘work being good for health’ is centred around CHP (Waddell and Burton, 2006). This narrative is then repeated in the heavily critiqued, DWP-commissioned Freud report (Freud, 2007) that helped set the design for the WCA (Stewart, 2016, 2019). In a similar vein, CHP take centre stage among arguments forwarded in the 2005 monograph authored by Cardiff academics (Waddell and Aylward, 2005), which laid foundations for the 2006 Welfare Reform Bill (Rutherford, 2007).

There is very little evidence behind the concept of CHP. The variant of biopsychosocial model to which it is attached has been reported as 'conceptually and empirically invalid' (Shakespeare et al., 2017: 30), with related social policy documentation described as 'largely self-referential' (Ravetz cited in Stewart, 2022). Among concerns is the unevidenced extrapolation from Waddell's research on back pain to other so-called common health problems (Shakespeare et al., 2017); there is no consideration of how back pain may differ from the plethora of diagnoses that could be positioned within this category. Further, suggestions that CHP are similar to bodily and mental symptoms experienced within the (implied healthy) working population are completely unevidenced, with research suggesting the contrary in some cases. For example, whilst ‘chronic fatigue syndrome’ is discussed among CHP, notably under the rubric of mental health (Waddell and Burton, 2004), research indicates that myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is associated with a multitude of bio-pathology and lower health-related quality of life than various cancers, multiple sclerosis and stroke (see Blease et al., 2017; Hunt, 2022b). Finally, whilst the Cardiff academics suggest that CHP is approximately interchangeable with ‘medically unexplained symptoms’ and ‘functional somatic syndromes’, there is no recognition of the nosological ambiguity that plagues these terms, alongside issues of misdiagnosis, undue psychologisation and biomedical neglect evidenced among diagnoses that may be positioned as such (see O’Leary, 2018; Blease et al., 2017; Hale et al., 2021). In other words, CHP is a clinically indistinct, ethically problematic, yet politically useful construct.

Rather than grounded in evidence, the construction of CHP was likely motivated by a combination of professional self-interest, capitalist labour market dynamics and associated neoliberal biopolitics. On one hand, by psychologising common health problems and minimising their severity, the ostensible need for biomedical care is minimised and a role is carved for more ‘cost-effective’ psychosocial interventions that allegedly effectuate recovery, thus re-attaching non-employed disabled people to the labour market and detaching them from sickness benefits (Rutherford, 2007; Faulkner, 2016). Certainly, Waddell and Aylward asserted that the cost-cutting orientation of their research was central to obtaining government funding (Aylward, 2010; Faulkner, 2016; Hunt, 2022b). On the other hand, to suggest that cost-cutting was the primary motivation of labour market policies implicating CHP overlooks a bigger picture of what has been termed ‘market workfare’ (Grover and Piggott, 2005): application of low-wage subsidies and increased conditionality to regulate a reserve army of labour that exerts downwards pressure on wages. In this respect, CHP may have played a significant role by re-constituting a group of disabled people as ‘not really disabled’ and thus part of the reserve (Soldatic, 2020; Grover and Piggott, 2007). This re-constitution has been bolstered through the afore-mentioned severe medical conditions / common health problems binary, alongside minimisation and responsibilisation of common health problems, promoting a deserving/undeserving dynamic with CHP positioned as the latter (Shakespeare et al., 2017; also see Garthwaite, 2014; Clarke et al., 2019). The ensuing moralising, victim-blaming discourse could then be deployed to ‘justify’ increased conditionality and sanctions (Garthwaite, 2014; Mills, 2018). Finally, it has been argued that the Waddell-Aylward biopsychosocial model has been central to a neoliberal project of welfare state demolition and replacement with a US-influenced private health insurance system (Stewart, 2016, 2019); CHP figures as a key element here (Hunt, 2022b).

Whilst the full repercussions of the White Paper's provisions are still unclear, there is little suggestion that the dynamics created by the legacy of CHP will change. Moreover, the agendas outlined above have clear relevance for the newest members of the chronic illness and disability communities: people with long Covid. The remainder of this commentary considers the risk of long Covid being positioned as ‘undeserving’ for social policy purposes, in particular given the parallels with another highly politicised post-infection diagnosis, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

Inheriting landscapes of exclusion? Concern for long COVID

Much concern for the future positioning of long Covid has been raised by the pre-pandemic disabled community, notably among those with experience of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) (ME Action, 2020). Additionally, concerns have been raised among people with ‘energy limiting conditions’ (see Hale et al., 2021), a grassroots term bearing some diagnostic overlap with common health problems, encompassing ME/CFS, long Covid and other diagnoses arguably positioned as ‘undeserving’ for political purposes. Such concerns appear justified, since people with ME/CFS have long traversed exclusionary socio-political landscapes that long Covid may now be at risk of inheriting (see Hunt et al., 2022; Hunt, 2023). Whilst these landscapes are common to many chronically ill and disabled groups, the foundations conceivably rest upon alliances and political agendas targeting ME/CFS as the archetypal ‘undeserving’ health condition (see Rutherford, 2007; Faulkner, 2016; Hunt, 2022a). These alliances not only implicate actors in UK government and the insurance industry as already referenced, but also involve considerable influence from within psychiatry.

Adding intellectual weight to the CHP narrative, the Cardiff centre researchers drew upon the work of psychiatrists, including Simon Wessely and Peter White, who were then developing a (bio)psychosocial approach to what they call ‘chronic fatigue syndrome’ that mirrored the Waddell-Aylward biopsychosocial model (Faulkner, 2016; Hunt, 2022a, 2022b). Wessely and White had previously approached Aylward (then at the DWP advising on benefits eligibility), and made a case for ME/CFS to be positioned for social policy purposes as amenable to interventions such as cognitive behavioural therapy and graded exercise therapy (CBT and GET)¹, which the psychiatrists helped to develop (Faulkner, 2016; Hunt, 2022b). Psychiatric influence thus contributed to re-constructing a condition previously known as ‘ME’ (understood largely through a biomedical lens) as a psychosocial entity putatively recoverable via psychologically-informed treatments. The Cardiff associates applied this template to CHP, thereby homogenising a heavily heterogenous group of health conditions: mental health, musculoskeletal and cardiorespiratory CHP were all framed as significantly entwined with ‘maladaptive’ psychology and thus remediable via psychosocial means. Of particular topical relevance, some actors involved in the psycho-politicisation of ME/CFS, and in the construction of common health problems, have now turned their attention to long Covid.

Increasing literature, including that authored by psychosocial proponents in the ME/CFS field, advocates conceptualising long Covid through a (bio)psychosocial lens, as something largely treatable via individualistic psychosocial interventions (see Hunt, 2022b, 2023). For example, psychiatrist Michael Sharpe produced a presentation on long Covid for reinsurance company Swiss Re (Sharpe, 2021), indicating a possible rehabilitative role for GET and CBT, and continuing to promote the controversial and robustly criticised PACE trial (White et al., 2011). The UK PACE trial, which compared effectiveness of standard medical care with medical care plus CBT, GET and ‘adaptive pacing therapy’² in treating ME/CFS, proclaimed GET and CBT as moderately effective treatments (White et al., 2011). The trial was co-led by Michael Sharpe, Peter White and Trudie Chalder, with Simon Wessely serving as a centre leader and Mansel Aylward observing on the Trial Steering Committee (White et al., 2011). Despite being heralded a success by investigators and much of the UK press (Faulkner, 2016), PACE has since been charged with numerous ethical and methodological flaws (see Marks, 2017 for a detailed account). Beyond a problematic combination of open-label design with self-reported outcome measures, some primary outcome measures were altered by trial investigators after the trial commenced, resulting in some participants meeting some recovery thresholds at trial entry point (Vink, 2017). Re-analyses of trial data, approximating original protocol-specified procedures and using data procured via Freedom of Information request, suggested that these alterations produced an over-inflation of improvement and recovery rates (Wilshire et al., 2018). Moreover, contrary to the study's aims, the interventions assessed had little impact on benefits claims, healthcare use, or employment among participants (Faulkner, 2016; Wilshire et al., 2018). The trial was discussed in UK parliament in 2018, where Carol Monaghan, the Scottish National Party MP for Glasgow North West, described the trial and its politics (which Monaghan identified as ‘removing people from long-term benefits’) as ‘one of the biggest medical scandals of the twenty-first century' (Hansard, 2018). In this regard, it is important to note that the trial was part-funded by the DWP with Aylward's assistance, whilst White, Sharpe and other trial investigators have provided ‘back-to-work’ consultancy to (re)insurance companies and government departments (Faulkner, 2016; Hunt, 2022a). Nevertheless – or perhaps accordingly – CBT is increasingly mooted as a recovery route for long Covid, again amongst psychosocial proponents in the ME/CFS arena and beyond (e.g., Kuut et al., 2023).

The political significance of PACE is underscored when considering the climate of increasing conditionality in social policy, furthered by the Work Capability Assessment (WCA), and possibly set to continue in the guise of a ‘personalised health conditionality approach’ (Gov.Uk, 2023a). Conditionality has historically been supported not only by the Cardiff centre associates but also, in the case of permanent disability and medical retirement pertaining to ME/CFS, by psychiatrists and psychosocial proponents in this field (Faulkner, 2016). Whilst it might be hoped that subgroups within the long Covid umbrella associated with more ‘objective’ impairment will escape such political agendas, suggestion by psychosocial proponents of ME/CFS to apply a label of ‘somatic symptom disorder’ or ‘bodily distress disorder’ to long Covid (Willis and Chalder, 2021) may indicate otherwise. These labels, in some respects similar to ‘medically unexplained symptoms’, are also applicable in cases of well-delineated medical conditions (such as cancer and heart disease), where individual responses to symptoms are deemed ‘excessive, disproportionate or maladaptive’ and thus amenable to mental health treatments, including via National Health Service (NHS) Talking Therapies (Willis and Chalder, 2021). The complicity of NHS Talking Therapies with neoliberal activation policies has been well documented elsewhere (Frayne, 2019), and the potential for psycho-pathologisation and responsibilisation through such pathways is clear. In this regard, it is noteworthy that the 2023 Autumn Statement indicated plans to expand NHS Talking Therapies, and to embed employment support not only in mental health services but also in musculoskeletal care, as part of its ‘back to work’ agenda (Gov.Uk, 2023d).

Finally, whilst it is widely acknowledged that psy actors are involved in developing a (bio)psychosocial approach to long Covid, less discussed is the involvement of others implicated in the construction of common health problems. Amongst these is Kim Burton. A UK All-Party-Parliamentary Group (APPG) session on ‘Long Covid and employment’ in June 2021 included presentations not only from Unum but also from Burton, the latter indicating a future role for ‘work-focused healthcare’ in long Covid (APPG Coronavirus, 2021). Further contributions (Lunt et al., 2022) indicate that this healthcare will be underpinned by a biopsychosocial model as applied to CHP. Such events should be considered against the backdrop of recent government funding to station employment advisors in NHS Talking Therapies (Gov.Uk, 2022), afore-mentioned provisions of the Autumn Statement (Gov.Uk, 2023d), and reports that NHS England may have de-prioritised referrals to interdisciplinary long Covid care (Kituno, 2023). Importantly, people with long Covid report difficulties within the workplace, and navigating social security and health systems, that echo those documented among other chronically ill and disabled people whose conditions can be positioned as CHP (Hale et al., 2021; Hunt, 2023; TUC and Long Covid Support, 2023).

Conclusion

The construct of common health problems (CHP) has been applied to delineate a group of alleged ‘undeserving’ disabled people, re-framing serious health conditions as lifestyle choices. This represents an attempt to justify exemption from social protections such as sickness benefit and biomedical care, whilst pushing disabled people into the labour market, increasing competition and driving down wages. Whilst it is unclear how the White Paper's provisions will translate into practice, there is indication that the legacy of CHP will live on in some guise.

Chief among concerns identified in this contribution is the implementation of non-medical personnel (Jobcentre work coaches) to determine work-related capability of people with complex health conditions, as per the proposed ‘personalised health conditionality approach’ (Gov.Uk, 2023a). This, combined with afore-mentioned indications of ‘mandatory’ work-related requirements and contents of the Autumn Statement, suggest that historical state-sponsored attacks on the physical and mental wellbeing of disabled people will continue, albeit under different language. Moreover, the well-documented complicity of frontline UK mental health services in (bio)political agendas (Frayne, 2019) raises serious questions regarding the state's capacity to mitigate further psycho-emotional harms. None of this bodes well for many within the disability and chronic illness communities, including people with long Covid, who are now at risk of inheriting these hostile socio-political landscapes. In particular, the continuous involvement of familiar actors, as evidenced in the construction of CHP and the psychosocial positioning of ME/CFS and long Covid, suggests that history is at risk of repeating itself.

Footnotes

Acknowledgements

The author thanks three anonymous reviewers for their helpful feedback on previous versions of this article.

Funding

The author received no financial support for the research or authorship of this article.

Notes

Author biography

Joanne Hunt is a disabled researcher with a background in psychology and psy therapies. Her research interests cluster around the (bio)politics of stigmatised health conditions and related disability, working at the intersection of disability studies, gender studies, critical psychology and ethics, with particular focus upon structurally competent, disability-affirmative healthcare.

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