Is a lack of knowledge about Long-COVID a reason to dodge people’s needs?

Worldwide, the introduction of vaccines has led many governments to downgrade the severity and risks of COVID-19, but their enthusiasm to clutch at a ‘return to normal’ agenda has led them to neglect a serious health and economic concern – the impact of, and risks linked to Long-COVID.

Long-COVID is a multi-system condition associated with a COVID-19 infection and can have many different symptoms. The WHO (2021) used a near-global Delphi study to identify 12 domains for a clinical-case definition but acknowledged that more evidence is needed before diagnostic criteria can be determined.  Their emergent definition of Long-COVID/post COVID-19 condition (see below) emphasises not only the difficulty of pinning down what constitutes this illness but also its impact throughout everyday life.

‘Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.’

WHO (2021) page 11

More locally, the Office for National Statistics estimates that 1.8 million people in the UK have had enduring symptoms from COVID-19 for at least 4 weeks and over three-quarters of a million for over a year, with over 90% of people never having been admitted to hospital (ONS May 2022).  Such a prevalent and pervasive illness requires particular attention as, for some, it shapes up to be more of a long-term, debilitating condition than the sharp two weeks off work that COVID-19 is portrayed to be.

The IPPR (2022) foresee Long-COVID contributing to an £8bn hit to UK prosperity as tens of thousands of people, many mid-career, are driven from the workforce because of it, others remain working but are debilitated by their symptoms. Given this, Governments must surely turn their attention to focusing on ensuring effective support for people living with Long-COVID is in place. But what could that look like and how could nurses, with their skills in case-management, symptom-management and continuity-of-care contribute?

In the absence of a clear understanding of pathophysiology, the current focus is on rehabilitation and learning to live with Long-COVID symptoms. In England, the NHS has established specialist Long-COVID clinics with a capacity for around 68,000 people (NHS England 2021) leaving most of those people already identified with Long-COVID (ONS, 2022) without dedicated support. Many of the clinics are run by teams with respiratory expertise, however for many people with Long-COVID there are no respiratory symptoms so their care may be sub-standard due to the complex multi-system, multi-symptom nature of this illness.

Whilst NHS England publishes activity data there are no outcomes as yet (NHS England 2022) – so what is it we are hoping to achieve for people living with Long-COVID?   If you can find and attend a specialist Long-COVID clinic you will get some support, but for those who cannot attend such a dedicated clinic help may be found in generalist primary care – which is swamped by post-COVID catch-up work and other pressing demands, alternative health and wellbeing services, or is largely absent resulting in unmet need.

Long-COVID is poorly understood but this cannot be an excuse for dodging people’s needs.  Working with people living with Long-COVID will help us understand better what is helpful and effective.  Of course, any gap in our understanding generates a need for further research into the causes of Long-COVID, its treatments and its palliations but if we wait for such ‘research-based’ answers we are doing a disservice to those people who need help now.  We need to build on what we already know; it may be that we know more than we think. Evidence suggests a multi-specialist approach could benefit people living with Long-COVID due to their many symptoms and presentations. Where no clear Long-COVID evidence exists a multi-specialist approach could draw on work already accumulated around symptoms which people with Long-COVID share with others experiencing different illnesses. If we could develop agreement on what might work if transferred to the Long-COVID arena we could systematically adapt and evaluate ‘what might work’ to build our Long-COVID associated knowledge-base.

If we take a second look at the WHO description of the post COVID-19 condition, remove the contested and poorly understood labelling of the condition, and focus on the symptoms reported, we have the beginning of a list that is all too familiar to nurses with expertise in symptom management irrespective of the context or county in which they work: ‘fatigue, shortness of breath, cognitive dysfunction’. There are others, including pain and these symptoms ‘generally have an impact on everyday functioning … and … may also fluctuate or relapse over time’.

For this reason, we believe nurses are in the best place to lead such an endeavour, to expose likely beneficial treatments, to deliver them and personalise them to the client and their context and evaluate them through routine monitoring, rapid-evaluations, and previously honed quality-improvement techniques such as small tests of change.

As authors of this blog, we draw primarily on our own experiences here in the UK. But to address a global condition we need to have an international conversation. We need to talk, to share knowledge, work out how we could use that knowledge and how we would evaluate the impact of it. Evidence Based Nursing (EBN) and the Journal of Research in Nursing (JRN) have joined forces to further this conversation by hosting an international Round-Table event in October 2022. At this event a panel of international experts from nursing and people with lived experiences of Long-COVID will join an international virtual audience to think more about Long-COVID, draw out principles for good practice and consider how nurses can actively move this agenda forward. Please join in the conversation.

This Blog is written by Elaine Maxwell (@maxwele), Andree Le May (@goldielym), Ann McMahon (@Research_Innov) and Alison Twycross (@alitwy) and is being jointly published by the Journal of Research in Nursing (@JRN_Latest) and Evidence Based Nursing (@EBNursingBMJ).








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