Covid hasn’t gone away – and nor has long Covid. Journalist Radhika Holmström examines the pandemic’s long-term effects.
It is three years since a cluster of cases of pneumonia of unknown cause was reported in Wuhan in China. Little did we know how soon lives around the world would be upended. Many people now feel that the pandemic is behind us, and very few are still testing regularly, but in reality, Covid is still with us. In fact, a spike with new variants is predicted with some unease by researchers in the field for this winter: quite possibly combined with influenza, to constitute a ‘twindemic’ (BMJ, 2022).
Alongside this, there is an increasing awareness that ‘long Covid’ can keep people ill or disabled for a considerable length of time. So for any clients sinking into Covid vaccination apathy, it’s worth reminding them of the realities, and that studies have suggested vaccination can reduce the risk of long Covid (Cambridge University Hospitals, 2022; British Heart Foundation, 2022). Research into the immunity required to protect against long Covid, as well as the role of new variants, continues.
But what is long Covid? How many people suffer from it and who does it affect? And how might it impact a community practitioner’s work day-to-day?
Pinning down the facts
One of the major issues with long Covid is the lack of a test – or, indeed, a particularly precise definition. NICE guidelines refer to ‘people who have signs and symptoms that develop during or after an infection consistent with Covid‑19, continue for more than four weeks and are not explained by an alternative diagnosis’ (NICE et al, 2022).
There is however a consensus on what those symptoms are most likely to be. The majority of people who believed they were affected by long Covid were acutely fatigued (69%); other common symptoms included difficulty concentrating (45%), shortness of breath (42%) and muscle ache (40%) (Office for National Statistics (ONS), 2022). Other surveys add chest pain, problems with memory, heart palpitations, dizziness and joint pain to the list – and many more besides.
An estimated 2.3 million people (3.5% of the population) in private households across the UK were experiencing ‘self-reported’* long Covid at the beginning of September (ONS, 2022).
Researchers are still exploring what causes some people to develop long Covid. For now, the condition seems to have some similarities with other post-infection syndromes such as chronic fatigue syndrome/myalgic encephalomyelitis. It seems clearly to be a ‘multisystem disorder’, which usually takes at least 35 weeks to recover from (Davis et al, 2021).
In addition, people who already have conditions such as heart or lung disease are more likely to have that illness or a similar one made worse – or Covid may have left lasting damage to organs such as the heart or kidneys, which may contribute to the symptoms reported as long Covid.
Under-18s and the CLoCK study
Young and old alike can be affected by long Covid. And there’s no hard-and-fast diagnosis for either. ‘It’s hard to diagnose – there is no blood test or scan,’ points out Terence Stephenson, Nuffield professor of child health at University College London (UCL)/Great Ormond Street Institute of Child Health. It’s also hard to tell if a young person’s symptoms are the result of Covid itself, or of all the factors associated with two years of uncertainty, lockdowns, and physical restraints. ‘When you see a 15-year-old who has fatigue, headache or shortness of breath, is it long Covid or is it “long pandemic?”’
Terence and his colleagues have been working on the CLoCK (Children and young people with Long Covid) study (led by UCL and Public Health England, with the assistance of 11 other universities and hospitals) since December 2020, following initial reports that around half the children and young people who developed Covid then developed long Covid.
‘We recruited 15,000 teenagers who’d tested positive, and 15,000 who’d been negative as control.’ Two years on, they have analysed their continuing results, to consider the possibility of ‘self-selection’ (that only young people with continuing problems continued to respond to the survey). At one extreme, it could be that one in seven with a positive result has at least three persistent symptoms three months later, and one in 14 has five symptoms or more; at the other extreme, that about one in 25 has three or more symptoms three months later, and one in 50 five or more. ‘The true result must lie somewhere in between. But given that there are around four or five million teenagers in the UK, at a conservative estimate that’s still around 100,000.’
The CLoCK study continues to investigate the condition in young people and how to treat it. The NHS has also set up 15 paediatric hubs in England specifically for this age group (NHS England, 2021). ‘Children under 16 should be referred by a local paediatrician via their GP,’ explains Dr Terry Segal, a consultant in general paediatrics and adolescent medicine who is one of the leaders of the pan-London services.
Symptoms that may point to long Covid in young people are absenteeism, mental health issues and poor performance at work
Other research has shown that young women and/or those who already have physical or mental health problems were particularly likely to have multiple symptoms with long Covid (Stephenson et al, 2022). Most of the work to date has been done on older children, but there’s evidence that small children can be affected too (Kikkenborg Berg et al, 2022).
Treatment and recovery
Definition complications aside, many people who contract long Covid recover over time, although it is important for employers to understand that just expecting those with the condition to ‘get back to work’ is likely to set back their recovery further. Self-care, and working with not against fatigue, is obviously important. Other recommended management tips include exercise (when feasible), attention to diet, moderating caffeine and alcohol, and working on mental wellbeing (Queen’s Nursing Institute (QNI), 2020). See Resources for when it may be necessary to see a GP.
England also has a network of around 90 NHS specialist centres to which people can be referred by their GP if symptoms persist longer than 12 weeks and cannot be explained by an alternative diagnosis. Here, specialists can develop management and treatment plans for the symptoms that particularly affect that individual person. The other three UK countries do not usually have specialist centres, but there is funding in place to support multiprofessional primary and secondary care services specifically for people with long Covid.
How can you help?
Health visitors and school nurses, in particular, may well find themselves coming across long Covid – or suspected long Covid. As Terence points out, it’s not always easy to distinguish between the condition and ‘long pandemic’, particularly when fatigue and low mood have been quite marked in many young people post-pandemic anyway.
‘We’ve tried not to differentiate between physical and mental health, but we also used four different ways of asking teenagers about their health and wellbeing,’ he says.
To their surprise, the responses from teenagers who had tested positive were not hugely different from those who tested negative for Covid, or in fact to teens from 10 years ago, pre-Covid. However, he adds: ‘There was one thing that stood out – 40% of both groups described feeling moderately or very anxious. We suspect that encompasses anxiety in general – not necessarily about their health.’
Symptoms that may point to long Covid are absenteeism (because young people are simply too fatigued), mental health issues and poor performance in young people who are now struggling to keep up with the workload and the environment.
‘You need to pick up on very subtle signals – and that requires training,’ says Eve Thrupp, who has a school nursing background, and leads on the long Covid network for the QNI. ‘There’s no way, now, that we’ll go through our careers without encountering long Covid.’
Eve also points out that CPs are in a good position to check if a child or young person potentially has long Covid. ‘As a school nurse you’d check your “activities and daily living” sheet, speaking to the young person holistically. But also, include “Have you had Covid? Has anyone in your house had it?” We just need to add this issue into the activities of daily living checklist.’
School nurses and HVs can also reassure families while they’re waiting for specialist services, she points out. ‘The wait time is what really worries parents; CPs are the people to check in, provide support and visits, recommend exercises and resources and so on. Little things like that can massively help.’
What about you?
What happens to CPs who have long Covid themselves? ‘I know we’re all aiming to get back to normal, but my own recent experience of Covid really brought home to me how debilitating it can be,’ says Janet Taylor, who is the CPHVA Executive chair and nurse manager, children’s services, South Eastern Health and Social Care Trust, Belfast. ‘There are other illnesses you can work through, but this one wipes you out. It’s even more worrying as this becomes counted as sick leave or absence.’
Janet’s advice is to talk to the occupational health department about what support and referrals are possible. ‘There’s no magic answer: you treat the symptoms, so you also need to get support for the physical or mental symptoms you’re having, and maybe further investigations – we do have to be careful not to blame everything on Covid. The key thing for me is if someone presents – including you – with persistent tiredness, get it checked.’
John McLaren is a former HV and now the employee director at NHS Borders and a senior rep for Unite-CPHVA. ‘We encourage people to return to work sooner rather than later – all the evidence shows that this is better for mental health – but only as long as this is feasible,’ he says. ‘That might be a phased return, or temporary redeployment into a role that’s less physically demanding. And obviously it’s important to acknowledge the GP’s advice too, and any consultants that someone is seeing for particular symptoms such as respiratory problems. However, it’s also important that union members take someone from the union to support them in meetings to discuss plans for returning to work and reasonable adjustments they may require.’
Take it seriously
‘Most people with long Covid get better with the passage of time but don’t disregard young people who have real problems,’ Terence concludes. ‘We’ve heard from colleagues running the 15 long Covid clinics who see young people who are completely laid low and ruined lives. They need help, just as adults do.’
Resources
Long Covid facts from the Queen’s Nursing Institute bit.ly/QNI_long_Covid
NHS information on long Covid bit.ly/NHS_long_Covid
Support and advice from the NHS, including when to see a GP for long Covid and next steps yourcovidrecovery.nhs.uk
References
British Heart Foundation. (2022) Long Covid: the symptoms and tips for recovery. See: www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/long-covid#Heading16 (accessed 25 October 2022).
Cambridge University Hospitals. (2022) Big fall in referrals to long Covid clinic following vaccine. See: cuh.nhs.uk/news/big-fall-in-referrals-to-long-covid-clinic-following-vaccine/ (accessed 25 October 2022).
Davis HE, Assaf GS, McCorkell M et al. (2022) Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. eClinicalMedicine 38: 101019.
Kikkenberg S, Palm P, Nygaard U et al. (2022) Long COVID symptoms in SARS-CoV-2-positive children aged 0–14 years and matched controls in Denmark (LongCOVIDKidsDK): a national, cross-sectional study. Lancet Child and Adolescent Health 6(9): 614-23.
Kmietowicz R. (0222) Sixty seconds on . . . the “twindemic”. BMJ 379: o2370.
NHS England. (2021) NHS sets up specialist young people’s services in £100 million long COVID care expansion. See: england.nhs.uk/2021/06/nhs-sets-up-specialist-young-peoples-services-in-100-million-long-covid-care-expansion/ (accessed 25 October 2022).
NICE, SIGN, RCGP. (2022) COVID-19 rapid guideline: managing the longterm effects of COVID-19. See: www.nice.org.uk/guidance/ng188/resources/COVID19-rapid-guideline-manag-ing-the-longterm-effects-of-COVID19-pdf-51035515742#:~:text=In%20addition%20to%20 (accessed 25 October 2022).
ONS. (2022) Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 6 October 2022. See: ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/6october2022 (accessed 25 October 2022).
Queen’s Nursing Institute. (2020) Living with Covid-19 (long Covid) and beyond. See: www.qni.org.uk/wp-content/uploads/2020/12/Living-with-Covid-19-Community-and-Primary-Care-Nursing-Resource.pdf (accessed 25 October 2022). .
Stephenson T, Pereira SMP, Shafran R et al. et al. (2022) Physical and mental health 3 months after SARS-CoV-2 infection (Long Covid) among adolescents in England (CLoCk): a national matched cohort study, Lancet Child and Adolescent Health 6(4): 230–39.
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