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  • National Institute for Health Research: Living with COVID-19 (15 October 2020)

    Patient Safety Learning
    • UK
    • Data, research and analysis
    • Pre-existing
    • Original author
    • No
    • Elaine Maxwell
    • 13/10/20
    • Everyone


    The COVID-19 pandemic has had far-reaching effects upon people’s lives, health care systems and wider society. As yet there is little research into the number of people at risk of developing ongoing COVID-19.

    Early attention has been on the acute illness generated by the virus, but it is becoming clear that, for some people,COVID-19 infection is a long term illness. This rapid and dynamic review authored by Dr Elaine Maxwell draws on the lived experience of patients and expert consensus as well as published evidence to better understand the impact of ongoing effects of COVID19, how health and social care services should respond, and what future research questions might be.


    Key messages

    • There is a widespread perception that people either die, get admitted to hospital or recover after two weeks. It is increasingly clear that for some people there is a distinct pathway of ongoing effects. There is an urgent need to better understand the symptom journey and the clinical risks that underlie that. People, their families and healthcare professionals need realistic expectations about what to expect.
    • A major obstacle is the lack of consensus on diagnostic criteria for ongoing COVID-19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed.
    • The fluctuating and multisystem symptoms need to be acknowledged. A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
    • There are significant psychological and social impacts that will have long-term consequences for individuals and for society if not well managed.
    • The multisystem nature of ongoing COVID-19 means that it needs to be considered holistically (both in service provision and in research). The varying degrees of dependency mean support in the community should be considered alongside hospital one-stop clinics. Social support needs to be understood together with the financial pressures on previously economically active people.
    • COVID-19 has a disproportionate effect on certain parts of the population, including care home residents. Black and Asian communities have seen high death rates and there are concerns about other minority groups and the socially disadvantaged. These people are already seldom heard in research as well as travellers, the homeless, those in prisons, people with mental health problems or learning difficulties; each having particular and distinct needs in relation to ongoing Covid19 that need to be understood.
    National Institute for Health Research: Living with COVID-19 (15 October 2020) https://evidence.nihr.ac.uk/themedreview/living-with-covid19/
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