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Health professionals urgently need more information and training to respond to the rising numbers of people in the UK living with so-called Long Covid, which may not be one condition but several different syndromes, according to researchers.
They said the NHS and social care system was currently unequipped to meet the needs of this emerging patient group, and that greater understanding about the phenomenon and the different presentations was needed to help design appropriate services and shape the workforce.
“The gap in our knowledge about the prevalence of ongoing effects, risk factors and the different pathways needs to be urgently filled”
The findings are laid out today in a timely report titled Living with Covid authored by Dr Elaine Maxwell, a nurse academic and content lead for the National Institute for Health Research’s Centre for Engagement and Dissemination (NIHR CED), which marks the start of an ongoing themed review.
Drawing on published evidence, the lived experience of patients, and consensus from an expert steering group, the review found that reported symptoms were so wide-ranging that the term Long Covid could in fact be being used as a “catch all” for up to four different syndromes.
These included post intensive care syndrome, post viral fatigue syndrome, long term Covid syndrome and permanent organ damage, and that some patients may be experiencing more than one of these conditions simultaneously.
The list of symptoms was said to be “huge” and covering “every part of the body and brain” including “very real” mental health issues, with some people reporting still being unable to work, study or care for dependents up to seven months after first being ill with Covid-19.
While the review team could not draw conclusions on the current prevalence in the UK, the available evidence showed people of all ages and backgrounds were experiencing persisting and chronic symptoms beyond the two-three week expected recovery window, regardless of whether they were hospitalised with the virus initially or not.
For some people symptoms fluctuated in severity and moved around different parts of the body with the experience being described by one person who participated in the NIHR CED review as like a “roller coaster”. “The biggest challenge for many was not the individual symptoms, but their unpredictability and the dashed hopes of recovery after a few good days,” the report stated.
However, the variation in symptoms and absence of an agreed definition was creating “diagnostic uncertainty” and meant patients frequently felt like their experiences were not believed by health professionals, potentially leading to problems in access to treatment and support.
The review team also heard from a number of nurses living with ongoing Covid-19 and said NHS occupational health services “should be considering this need, and in particular return to work schemes”.
While research is still at an early stage the review determined that health and social care services were currently “not equipped to support people living with Covid-19” and that staff needed better information and training if the needs of this patient group were to be appropriately met.
Speaking at a press briefing to mark the launch, Dr Maxwell said: “The gap in our knowledge about the prevalence of ongoing effects, risk factors and the different pathways needs to be urgently filled in order to better plan care and to allow the NHS to design appropriate models of care.”
The recent announcement of funding from NHS England to establish new specialist ‘one-stop’ Long Covid clinics was “very welcome”, said Dr Maxwell, but she added that “all healthcare staff need a better understanding of the different presentations in order for people to feel heard”.
“Whilst this will place additional burden on a depleted workforce there will be a commitment to ensure that all people are able to access appropriate support”
The review determined that the development of a “working diagnosis” of ongoing Covid-19 would be beneficial as well as a code for clinical datasets to capture anyone who presented with suspected symptoms or who had self-diagnosed with Long Covid to build a greater understanding of the phenomenon and expand the research base. However, Dr Maxwell said it was important not to “narrow down the definition too early and potentially exclude many people who are suffering”.
It is expected that much of the care for people living with ongoing Covid-19 will be provided in the community and the review stated that this would “necessitate an expansion of the workforce”. Given the nature of the condition, the review also highlighted the potential benefit of having a “case manager” for patients.
In an opinion piece for Nursing Times, Dr Maxwell explored the role that community matrons could play in coordinating the patient journey, which is likely to span several different medical specialities. “Maybe, the emergence of Covid-19 means it is time to revisit community matrons and the role of skilled nursing generalists,” she wrote.
The Queen’s Nursing Institute is currently putting together a resource for community and primary care nurses about caring for people living with the long-term effects of Covid-19. The work is being led by Sharon Aldridge-Bent, the charity’s director of nursing programmes (leadership).
While general practice nurses were likely to be dealing with these patients at their first presentation and therefore needed to be informed, the expertise of district nurses in the holistic assessment and coordination of care would be “paramount”, Ms Aldridge-Bent told Nursing Times.
“The QNI are aware that district nursing services are already stretched and whilst this will place additional burden on a depleted workforce there will be a commitment to ensure that all people are able to access appropriate support,” she added.
The NIHR CED plans to update the Living with Covid review when new findings emerge and is actively calling for further testimonials and evidence from health professionals and patients.