Analysis

Long-COVID: what nurses need to know about longer-term effects of the virus

How to support people who still have symptoms months after their initial infection

How to support people who still have symptoms months after their initial infection

  • Evidence is building that the symptoms of COVID-19 can continue for weeks or even months after the initial infection
  • Long-term symptoms are varied and include debilitating fatigue, respiratory disorders, cardiovascular illness and mental health issues
  • The resources available to help people manage their long-term symptoms
Fatigue is a major feature of peoples long-COVID symptoms Picture: iStock

Initially it was thought that most people would recover from COVID-19 within two weeks.

But many people who have had the virus have experienced ongoing symptoms for weeks, and sometimes months.

Long-term effects of COVID-19

How to support people who still have symptoms months after their initial infection

  • Evidence is building that the symptoms of COVID-19 can continue for weeks or even months after the initial infection
  • Long-term symptoms are varied and include debilitating fatigue, respiratory disorders, cardiovascular illness and mental health issues
  • The resources available to help people manage their long-term symptoms
A man holding his head, looking fatigued. Fatigue is a major feature of people’s long-COVID symptoms
Fatigue is a major feature of people’s long-COVID symptoms Picture: iStock

Initially it was thought that most people would recover from COVID-19 within two weeks.

But many people who have had the virus have experienced ongoing symptoms for weeks, and sometimes months.

Long-term effects of COVID-19

These long-term effects have gained the term long-COVID, and social media, the media and support groups are filled with people sharing their experiences, including nurses and doctors.

30 January 2020

COVID-19 was declared a public health emergency of international concern by the World Health Organization

While many people do recover swiftly, data from the COVID Symptom Study – where the data of more than 4 million people were collected through an app – revealed in early June that one in ten people are sick for three weeks or more, and some for much longer.

Data from the app, which was developed by doctors and scientists in partnership with health science company ZOE and is used by researchers at King’s College London, revealed that 60,000 people have had symptoms for more than three months.

Is long-COVID officially recognised?

While data are still emerging, in early September the government said there was ‘accumulating evidence’ of long-term COVID-19 effects.

The Department of Health and Social Care (DHSC) said 10% of people with ‘mild’ cases still had symptoms after four weeks.

What symptoms are people reporting?

People are reporting a wide range of symptoms, many of which seem to come and go in different phases.

DHSC says reported symptoms include:

  • Respiratory symptoms and conditions such as chronic cough, shortness of breath, lung inflammation and fibrosis, and pulmonary vascular disease.
  • Cardiovascular symptoms and disease such as chest tightness, acute myocarditis and heart failure.
  • Protracted loss of or change in smell and taste.
  • Mental health problems including depression, anxiety and cognitive difficulties.
  • Inflammatory disorders such as myalgia and multisystem inflammatory syndrome.
  • Gastrointestinal disturbance with diarrhoea.
  • Continuing headaches.
  • Fatigue, weakness and sleeplessness.
  • Liver and kidney dysfunction.
  • Clotting disorders and thrombosis.
  • Lymphadenopathy.
  • Skin rashes.
The COVID Symptom Study app, which collected data from more than 4 million people
The COVID Symptom Study app collected data from more than 4 million people
Picture: Leon Neal/Getty Images

It seems that people with mild cases of the disease are more likely to have a variety of symptoms that come and go over a more extended period, according to the COVID Symptom Study.

Support groups have heard from patients who have endured symptoms for months. One woman has described having chest pains, cough, diarrhoea, fever, neurological symptoms, respiratory symptoms, severe fatigue, vertigo and vomiting.

‘I have suffered daily with different symptoms,’ she wrote on the website of the COVID- 19 Recovery Collective support group. ‘Nobody is listening. I feel debilitated and so depressed.’

‘Support groups have heard from patients who have endured symptoms for months. One woman has described having chest pains, cough, diarrhoea, fever, neurological symptoms, respiratory symptoms, severe fatigue, vertigo and vomiting’

The woman described initially relatively mild symptoms that have now gone on for four months, with relapses of breathing problems. She said she was still off work after previous attempts to return caused her symptoms to worsen severely.

‘My symptoms continued and while I am never free of them, I had some okay days, followed by periods where I needed to be back in bed.’

What is the evidence base?

A lot of the reports are anecdotal, but more concrete evidence, such as that from the COVID Symptom Study, is starting to emerge.

A team of researchers from Italy reported that nearly nine out of ten patients (87%) discharged from a hospital in Rome after recovering from COVID-19 were still experiencing at least one symptom 60 days after onset.

The study, published in JAMA, found that 13% of the 143 people were completely free of any symptoms, while 32% had one or two symptoms and 55% had three or more. Two fifths of patients reported that their quality of life had worsened.

More research is being carried out, including an £8.4 million study into the long-term effects of the virus on hospitalised patients in the UK. The study, announced by health and social care secretary Matt Hancock in early July, aims to follow 10,000 patients for at least a year.

What has the NHS said about long-COVID?

The potentially long-term effects of having COVID-19 were acknowledged by the NHS with the launch of its Your COVID Recovery service.

Patients who have had the virus will have access to a face-to-face consultation with their local rehabilitation team, usually comprising physiotherapists, nurses and mental health specialists.

Following this initial assessment, those who need it will be offered a personalised package of online aftercare lasting up to 12 weeks, the DHSC says.

Support in patients’ homes should include access to nurses and physiotherapists, online peer support, exercise tutorials to regain muscle strength and lung function, and access to mental health support and services.

How can nurses help those affected?

Many of those affected feel ‘largely invisible’ as they may never have been admitted to hospital, are largely at home, were not eligible for COVID-19 testing and are unrecorded in statistics, according to Long Covid, an online support group.

Sharon Aldridge-Bent, director of nursing (leadership) at the QNI
Sharon Aldridge-Bent: ‘Individualised care
is needed’

Queen’s Nursing Institute (QNI) director of nursing (leadership) Sharon Aldridge-Bent says primary care and community nurses are likely to come across people affected by long-COVID.

The support group Long Covid also claims many of those affected will end up in emergency departments.

Ms Aldridge-Bent is developing a resource for primary and community nurses that has been commissioned by NHS England and NHS Improvement and will be published in the autumn.

She says there are many different symptoms reported, and a wide spectrum of severity, meaning an individualised approach is needed.

Problems such as isolation and loneliness are affecting people, including a younger cohort than might usually be considered at risk, especially those who may normally work in an office. Memory and cognitive problems, often described as ‘brain fog’ are also often reported, including by younger people.

‘The QNI guidance really emphasises the importance of listening to a person’s lived experience of having COVID-19, and what matters to them in their recovery, and letting them lead, because it is their experience,’ she says.

‘Community nurses are really good at this, listening and setting people in the right direction. This might be signposting or referral to other services. For many people, their recovery will centre on self-care and self-management, and they may need some support with that.’

Oliver Jones, support nurse at the UK Sepsis Trust, which is also supporting people affected by ongoing problems with COVID-19, agrees that listening to people is a crucial first step. ‘It is very cathartic and therapeutic for the person affected to talk about it and helps them validate what they are feeling. Recognition of long-COVID is increasing, and believing what people tell us is essential. ’

How to advise patients on recovering from fatigue

Managing fatigue to aid recovery is a key aspect for many people. Mr Jones says fatigue management is one of the most common areas on which people contact the UK Sepsis Trust for advice. Healthcare professionals can also call the phone line for advice on how to support their patients.

He advises patients to keep a detailed diary for a week or two recording activity, energy levels and when fatigue strikes.

10%

of people with ‘mild’ cases of COVID-19 still had symptoms after four weeks

Source: Department of Health and Social Care

‘It is about getting a new normal baseline, and this can be really challenging for people who just want to get back to normal. We talk about the three Ps of pacing, planning and prioritising. So people need to do an honest appraisal of what they are able to do, and that may only be 10 to 20% of what they can normally do, and start from there,’ he says.

‘They should prioritise the activities that are important to them, and do them when they have the most energy, which is often the mornings, and be aware of the need to pace themselves.’

Practical advice for patients struggling with post-viral fatigue, described as an extended period of feeling unwell and fatigued after COVID-19, has been published by the Royal College of Occupational Therapists and is endorsed by the Intensive Care Society.

A woman relaxing on a window seat, listening to music. Long-COVID patients are being advised to implement a relaxation strategy
Patients are being advised to find a good relaxation strategy to help manage fatigue Picture: iStock

It emphasises the importance of resting for the body and mind. ‘Keep television, phones and social media to a minimum. Relaxation, breathing and meditation can all support quality rest – the NHS Apps Library has free tools you can try,’ the guide says.

‘Sensory relaxation tools such as fragrances, blankets, and relaxing music can also help. If a strategy doesn’t work for you, try another one until you find one that does.’

It also encourages patients to keep to normal eating routines, keeping hydrated, and ensuring they get enough sleep. ‘Unless you feel fully recovered after self-isolation, you shouldn’t work. Your body still needs to focus on fighting the infection.’

What other advice can help patients recover?

Encourage patients to continue to be gentle with themselves as they recover.

Exercises for coping with breathlessness and controlling breathing and ongoing cough are available on the NHS Your COVID Recovery website. It also has advice for dealing with fear, anxiety, low mood and cognitive problems.

A woman holding her chest, due to shortness of breath
In some cases, shortness of breath may
continue for months after initial illness
Picture: iStock

One approach is a ‘balanced thinking chart’ for fear and anxiety, which suggests drawing a table with two columns.

Write unhelpful anxious thoughts in the first column, then more balanced thoughts in the second.

For example, the first column could say: ‘My chest feels tight, if I’m not breathing properly I might have a heart attack’ and in the second: ‘The doctor said it will take some time for the stiffness in my lungs to get better but she explained I’m still getting plenty of oxygen into my body and doing the exercises I’ve been given will improve my health’.

Support groups and the NHS say that pacing is an essential element of recovery for many people.

The Royal College of Occupational Therapists recommends a gradual increase in activity levels as people start to recover, while being aware of the need to rest.

People should build breaks into their day, even if they don’t think they need them. People will often increase activity levels too quickly, which can set them back.

‘The cycle of relapses lasted for months’

Jane Ireson, a nurse specialist in gestational trophoblastic disease and a National Institute for Health Research doctoral fellow based in Sheffield, fell ill with COVID-19 in March, just before lockdown.

Nurse Jane Ireson, who still has COVID-19 symptoms months after initial illness
Jane Ireson is still living with COVID-19
symptoms six months on

Six months on, the previously fit and healthy 42 year old is still living with the ongoing effects of the virus.

Her initial symptoms did not include fever or cough, but she did feel shivery, achy, had a headache, sore throat, lack of taste and smell, and she was fatigued.

A test confirmed she had COVID-19, but she was keen to return to work when it was safe to do so.

‘I felt I could be really useful as a front-line worker who had already had COVID-19. I hastily volunteered for extra shifts and to work at the Nightingale Hospital, finding comfort in the familiarity, compassion and camaraderie of nursing,’ she says.

‘I was back to being unable to get out of bed for three days’

However, after three weeks, she was still having a mix of good and bad days. As someone who usually ran ultra races and cycled ten miles a day, she decided to try a small jog.

‘But this was too much and during this week I deteriorated quickly with an acute urinary and kidney infection. I was back to being unable to get out of bed for three days with similar symptoms to the first round of COVID-19.’

This cycle of relapses continued for months, with frequent bouts of physical and mental exhaustion that made it difficult to do normal everyday activities. She learnt to accept that intermittent breathlessness, chest pain and having a much lower exercise tolerance was her new normal.

Six months on ‘my life is more bearable’

But now, at six months, she is on an upwards trajectory with her recovery.

‘I know a lot of people have had it a lot worse, and I have reached a point where, even though it is not normal, my life is more bearable and liveable,’ she says. ‘I have got much better at managing it, I do less and pace myself. I also think I am improving slowly. It has been a challenging experience, but I am optimistic about the future.’

Better evidence-based guidance would help those affected to self-manage, feel less isolated with their recovery and help healthcare professionals support them, she says.

Erin Dean is a health journalist


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