• Nemesis (Jo)

Factor #4: Hierarchy of disease (and hierarchy of patients)

A rather uncomfortable truth in healthcare is that there exists a hierarchy of disease and, by extension, hierarchy of patients within health services. Ask many people with medically contested chronic illness and they are likely to tell you that they know there exists such a hierarchy, because these patients typically figure at the very bottom, a perception supported in social sciences literature. Illnesses which attract greatest interest and respect from healthcare professionals, scientists and society more broadly (and therefore, most research funding and healthcare resources) are usually those consonant with biomedical and acute care models.


Accordingly, it has been suggested that objectively detectable, easily anatomically localised disease with clear treatment procedures is prioritised and legitimised over illnesses around which there is less medical certainty. Unsurprisingly, ‘medically unexplained symptoms’ (MUS - illnesses which do not have an established biomarker, clear aetiology or pathogenesis) feature at the very bottom of the hierarchy. MUS are often disparate, indistinct, un-localised and dynamic (fluctuating) which creates huge problems when trying to shoehorn into traditional healthcare frameworks of understanding.


ME/CFS, chronic Lyme disease and fibromyalgia have been framed by certain researchers, clinicians and policymakers as MUS; this is also largely the position of the NHS. It should however be noted that there are large bodies of biomedical research, particularly perhaps in the case of ME/CFS, which have been ignored. Further, the World Health Organisation recognised ME as a neurological disease as far back as 1969; the term CFS was created through a psychiatric movement to frame ME as a (predictably) primarily psychological or psychiatric disorder.


Long Covid might also be considered by some as MUS at present, given that there is no established biomarker for the post-viral or long-tail phase. Indeed, suggestions from Long Covid patients that the fluctuating and multisystem nature of their symptoms seems to be adding to the disbelief of healthcare professionals is well supported by recurrent themes in the accounts of MUS patients, both within and outside of research.


Such themes might be explained by biopsychosocial literature which suggests that the more polysymptomatic a patient is, the more likely the explanation is to be psychological, psychosocial, or psychosomatic. Interestingly, this dynamic of disbelief seems to have come as somewhat of a surprise to Long Covid researchers and to the UK press.


Where Long Covid can be positioned within the hierarchy of disease right now is debatable; despite lack of fit with the biomedical model, the growing number of medical doctors with Long Covid is (rather perversely) of benefit to other patients as it lends social capital and medical authority to the collective patient voice. Whilst of course long-term illness would never be wished on anybody, it should be remembered that certain other chronically ill patient groups have had little or no such advocacy.


Further, the sheer number of people falling ill with Long Covid at the same time has allowed for a stronger and more cohesive collective patient voice to emerge relative to other post-viral patient groups such as ME/CFS. Both these considerations demonstrate how numerical and power majority dynamics impact on hierarchy of illness; if the health condition is common, particularly where there are socially influential or powerful patient advocates, the condition is typically positioned higher in the hierarchy.


That said, it should be remembered that both Long Covid and other chronic illness patients who are already marginalised on grounds of varying layers of social disadvantage may not have access to this collective voice. Indeed, the discomforting truth is that those sub-groups of Long Covid (and other chronic illness) patients who are most in need of healthcare and other social support are those who are systematically marginalised from such.


Research suggests that people from racial and ethnic minority backgrounds, women and lower socioeconomic status (working class) patients are more likely to have their concerns psychologised and dismissed. Thus, patients who are already discriminated against more broadly within society will indubitably find themselves at the bottom of the healthcare hierarchy. Having to cope with Long Covid within an ill-equipped healthcare system will inevitably increase their marginalisation.


Overall, Long Covid lacks characteristics of an illness (disease) that would position it towards the top of the disease hierarchy, which arguably increases the likelihood of patient concerns being minimised, dismissed and/ or psychologised (aka gaslighted). This results in Long Covid patients being denied the healthcare they need.


One other factor arguably impacts on hierarchy of disease and therefore prioritisation of patients, at least in the UK: financial incentives for GPs within primary care. The Quality Outcomes Framework (QOF) is a pay-for-performance scheme that was introduced in 2004. Within this framework, GPs are financially incentivised to achieve high quality care of patients with certain (medically legitimised) conditions. Medically contested illnesses such as ME/CFS, fibromyalgia and chronic Lyme disease do not figure amongst these incentivised conditions. Currently, neither does Long Covid, although it would be unfair to expect otherwise so early on in its history. Qualitative research has shown that, for some GPs, absence of financial incentives for caring for illnesses such as ME/CFS can discourage GPs from taking the illness seriously.


Interestingly, depression and certain other mental health conditions are QOF supported, which means that framing ME/CFS, Lyme, Long Covid or any medically contested chronic illness as primarily psychological not only helps to minimise medical uncertainty by framing it in such a way that (biopsychosocial-inspired) treatments can be offered, but also results in financial rewards for GP practices. In a previous article in this series, I mentioned a number of illnesses (cancer, congestive heart failure and stroke) which are associated in research with a better quality of life than ME/CFS but which (partly due to higher mortality rate) are taken far more seriously and receive far better care. It is probably not coincidental that these illnesses also all attract QOF points (i.e. caring for these patient groups can earn GP practices extra money).


It should be noted that GP surgeries do not have to sign up to the QOF system but that, unsurprisingly, the huge majority have chosen to do so. It will be interesting to see whether the QOF system undergoes a change in philosophy in the wake of Long Covid.


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