Adapted from the RCGP response and top tips for caring for our patients.1
One of the largest coronavirus studies funded by the UK Government concluded about two million people in England may have had ‘long Covid’ since the start of the pandemic.2
The REACT-2 programme based its findings on self-reported data from 508,707 adults from between September 2020 and February 2021. Around a fifth of those those surveyed in the study, released last month, reported previous Covid-19 symptoms and of those 37.7% said one of more symptom lasted at least 12 weeks.
NICE, Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) published formal UK national guidance in December last year,3 adapted in to a patient friendly version,4 which included a case definition to use in clinical practice. The following terms are used to describe different phases of Covid-19:
- acute Covid-19 – signs and symptoms of Covid-19 for up to four weeks.
- ongoing symptomatic Covid-19 – signs and symptoms of Covid-19 from four to 12 weeks.
- post-Covid-19 syndrome – signs and symptoms that develop during or after an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.
Long Covid is defined as ‘adults, children and young people who have new or ongoing symptoms four weeks or more after the start of acute Covid’.
Post-Covid-19 syndrome is also described as: ‘present(ing) with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body’ and that it may be considered before 12 weeks, while the possibility of an alternative underlying disease is being assessed.
Case definition from NG188 Management of the long term effects of Covid:
1. Post Covid-19 syndrome is a real condition. Believe your patient, listen, show empathy and acknowledge the diagnosis.
As a nurse, you are perfectly placed to listen to your patient. If a patient tells you that they have symptoms that have persisted since their Covid-19 infection for four weeks or more then it is likely to be significant. If it has lasted for 12 weeks or more they may have ‘post Covid-19 syndrome’. Believe them; spend time listening to them and pass on your concerns to a senior member of staff. Ask them to come back another time to tell you more or offer book an appointment to discuss their concerns with a more senior member of the team. ‘Finding the right GP’, a qualitative study of the experiences of people with ‘long Covid,’ shows the importance patients with long-term symptoms of Covid-19 placed on being believed and shown empathy and understanding.5 This is cited as one of the most significant things all clinicians can do, with 73% believing that listening and empathy were beneficial for their patients. Listening actively, taking time to understand the full impact from a biopsychosocial perspective on them, their family and their lives is key.
2. The patient does not need a positive SARS-CoV-2 test, or have been admitted to hospital to be diagnosed. Anyone with an acute infection of Covid-19, however mild, can go on to develop post Covid-19 syndrome.
Since mass community testing was not available in the first wave of the pandemic, if a patient tells you they have symptoms that have persisted after a presumed or proven Covid-19 infection, then it is important that we consider a diagnosis of post Covid-19 syndrome. This includes those who are:
- Self-diagnosed with Covid-19 based on the clinical criteria and self-cared in the community during their acute illness.
- Clinically diagnosed with Covid-19 by a health care professional including 111/NHS24, primary and secondary care, with or without testing.
- Diagnosed with SARS-CoV-2 testing in the community or in hospital.
Considering the diagnosis and not dismissing symptoms will ensure you take further steps to assess your patient yourself, by asking a more senior member of the team for help, or alternatively advising them to book an appointment and talk to their primary care team.
3. Post Covid-19 syndrome is a multisystem disease. Always consider the possibility of post Covid-19 syndrome when patients raise their concerns with you.
The NICE/SIGN/RCGP definition is clear that post Covid-19 syndrome can affect any system in the body and that symptoms can change over time.
Fatigue, both general and post exertional fatigue; respiratory symptoms including ongoing shortness of breath, persistent cough and chest pain; musculoskeletal symptoms including non-specific joint and muscle pain; neurological symptoms including headaches, dizziness, neurocognitive disorder such as brain fog, confusion and thought disorder; cardiovascular symptoms including palpitations and myocarditis, autonomic dysfunction including flushing and postural tachycardia syndrome (PoTs); gastrointestinal upset including nausea, bowel changes and indigestion; persistent fever, rashes, ongoing loss of smell/taste and psychiatric and psychological symptoms including sleep disorders and mood changes are just some of the commonly reported symptoms associated with post Covid-19 syndrome.
Anxiety and psychological symptoms (including depression) can and do happen following a Covid-19 infection. The symptoms can be directly related to the disease or as an effect of the patient coming to terms with being unwell for a long period of time, or the frustration of not getting better.
If you think a patient may have persisting symptoms or post Covid-19 syndrome, ask for help or refer them to a more senior member of the team.
4. Patients must be fully assessed and investigated by a clinician, and other underlying alternative causes for symptoms ruled out. The diagnosis is one of exclusion.
Before a diagnosis of post Covid-19 syndrome can be made, it is important that other causes of persisting symptoms are ruled out. For example, a patient with a persistent cough may have an underlying cancer, persisting shortness of breath may be due to heart failure; a patient with ongoing fatigue may be pregnant, have anaemia, hypothyroidism or uncontrolled diabetes; and a persistent fever may be caused by malignancy or an active infection. Only once other causes of symptoms have been ruled out can a diagnosis of post Covid-19 syndrome be made.
This assessment can begin at any time – you do not need to wait until 12 weeks.
If you are concerned that your patient is acutely unwell, then you should immediately seek senior help. In the early stages of ‘long Covid’ some patients can have shortness of breath caused by venous thromboembolism, or chest pain caused by cardiac disease, so don’t delay asking for help if you are concerned.
5. Anyone no matter how young or old can suffer from long-term symptoms following a Covid-19 infection.
Post Covid-19 syndrome can affect anyone, irrespective of their gender and at any age. The most common presentation is seen in middle age (35-69), with a slight female preponderance, and although more uncommon, it is also seen in children and in older adults.
6. You can get more information about long Covid and post-Covid-19 syndrome from the Your Covid Recovery website.6
Advise your patients that they can look at the website to get a better understanding of their condition, get lots of self-help ideas and answers to questions whilst waiting to be seen and assessed by the clinical team.
2. Persistent symptoms following SARS-CoV-2 infection in a random community sample of 508,707 people – Imperial College London REACT