Long covid and the remarkable parallels with rare diseases

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5 May 2021

How does the impact of living with long covid compare with having a rare disease?

People living with rare conditions have already commented on parallels between the sudden restrictions the pandemic placed on our all lives – and the reality for many who are living with a rare condition. The isolation of lockdown, anxiety about being able to access healthcare and about the lack of effective treatments, have weighed heavy on so many people. Now, new research into long covid is revealing yet more remarkable similarities with the rare experience: the findings outlined here are striking in their resemblance to the experiences of many in our community.

Interviews with 114 people showed that long covid is a confusing illness with uncertain prognosis. Interviewees talked about the ‘difficulty accessing and navigating services’ – which they found ‘complex … and exhausting’. They reported not being taken seriously and the resulting barriers to finding a diagnosis, and experienced ‘disjointed and siloed care’. There was variation both in standards of care, such as inconsistent criteria for making referrals, and in the quality of relationships with healthcare professionals (‘some participants felt well supported while others felt “fobbed off”’).[1]

A large proportion of interviewees said that healthcare professionals not only didn’t recognise their condition, know how to diagnose or manage it or believe that it existed, but there was also a lack of empathy and understanding of the impact the condition was having. This is reflected in findings from another research group that focussed specifically on experiences of GP services for people with long covid. The main themes uncovered include ‘the “hard and heavy work” of enduring and managing symptoms and accessing care; living with uncertainty … and the importance of finding the “right” GP’ who can provide the appropriate empathy and support needed.[2]

The impact of long covid on daily life and on wellbeing, like many rare conditions, is substantial. Another research group has reported that out of 2,550 survey respondents, 64% said they were unable to carry out their usual activities; 17% were unable to work solely due to long covid; 66% had taken time off work and 37% reported loss of income.[3]

Anxiety was found to be very common, reported by 28% of those who took the survey. In addition to the impact on everyday life, the researchers described the multitude of further causes of anxiety such as the ‘unknown nature and prognosis of the illness, not having a definitive treatment, and the anxiety of not being believed by others including health professionals and employers’. All of which is painfully familiar to those living with a rare condition, diagnosed or undiagnosed.

A proposed list of quality principles to improve the care of those with long covid unsurprisingly mirrors much of what has long been advocated as necessary for those with rare conditions:

  • ensuring access to care
  • reducing burden of illness
  • taking clinical responsibility and providing continuity of care
  • multi-disciplinary rehabilitation
  • evidence based investigation and management
  • further development of the knowledge base and clinical services.

We hope that the harsh light being shone on the ability of the health service to meet the needs of people with an ‘unknown’, complex and debilitating condition (long covid) will emphasise how important it is to grasp the opportunity of the new UK Rare Diseases Framework and drive the development of effective and bold national plans in response.

[1] Ladds E et al. BMC Health Services Research. 2020.

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-020-06001-y

[2] Kingstone T et al. BJGP Open. 2020.

https://bjgpopen.org/content/4/5/bjgpopen20X101143

[3] Ziauddeen N et al. Pre-print. 2021.

https://www.medrxiv.org/content/10.1101/2021.03.21.21253968v2