Related information: Clinical case definitions

Rationale

People need good information after acute COVID-19 so they know what to expect and when to ask for more medical advice. This could help to relieve anxiety if people do not recover in the way they expect. Evidence from patient experience and the panel’s own experiences supported this, particularly because symptoms can fluctuate and there are so many different symptoms reported. Information may be provided by the person’s GP or community services, or by secondary care for people who were in hospital. 

For the November 2021 update, the panel heard expert testimony that absence from or poor performance at work or education was associated with poor outcomes for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome. The panel agreed that it is important for people to contact a health professional if they are struggling with returning to work or education after acute COVID-19 to ensure they receive support with any continuing symptoms.

The panel discussed whether there were any symptoms in particular that people should look out for that that may suggest they have ongoing symptomatic COVID-19 or post-COVID-19 syndrome. They agreed that there was no new evidence in this area and that the list of possible symptoms is too long to give people helpful advice on which symptoms to look out for. The panel agreed that people should contact a healthcare professional if they are concerned about any new, ongoing or worsening symptoms. The panel also noted that there is some helpful information on the Your COVID Recovery website that outlines when people should contact their healthcare professional.

Recommendations

Give people who have had suspected or confirmed acute COVID-19 (and their families or carers, as appropriate) advice and written information on:

  • the most common new or ongoing symptoms after acute COVID-19 (see Advice and resources for commonly reported symptoms and signs)
  • what they might expect during their recovery, including that:
    • recovery time is different for everyone but for many people symptoms will resolve by 12 weeks
    • the likelihood of developing ongoing symptomatic COVID-19 or post-COVID-19 syndrome is not thought to be linked to the severity of their acute COVID-19 (including whether they were in hospital) 
    • if new or ongoing symptoms occur they can change unpredictably, affecting them in different ways at different times
  • how to self manage ongoing symptomatic COVID-19 or post-COVID-19 syndrome (see section 6.1)
  • who to contact if they are worried about new, ongoing or worsening symptoms, or if they are struggling to return to education, work or other usual activities,  especially if they have them more than 4 weeks after the start of acute COVID-19.

For signs or symptoms that could be caused by an acute or life-threatening complication, see the recommendation on referral.

See also section below: Further national resources for support (from the Scottish Government's Implementation Support Note).

Provide all information in accessible and age-appropriate formats so that people can understand and take part in decisions about their care. Follow relevant national guidance on communication, providing information (including different formats and languages), and shared decision making. (For further details see www.realisticmedicine.scot) and Healthcare Improvement Scotland's website 'What Matters To You?').

Rationale

Observational evidence (Antonelli et al, 2021; Arnold et al, 2021; Strain et al, 2021) and expert testimony on the safety and therapeutic benefit of COVID-19 vaccines in the context of long-term effects of COVID-19 were inconclusive for the outcomes of duration and change in symptoms, quality of life and mental wellbeing. The population included people with existing long-term effects of COVID-19 and people infected after vaccination who reported symptoms of 28 days or longer since vaccination.

The expert panel agreed that the findings could not justify a positive recommendation for COVID-19 vaccination to treat the long-term effects of COVID-19, nor a negative recommendation against this intervention in the absence of evidence of harm. 

However, the panel recognised the safety and effectiveness of vaccines in preventing acute infection and the importance of the national COVID-19 vaccination programme to protect all people, particularly those who are at highest risk from serious illness or death from COVID-19 or at risk of transmitting infection. Therefore, the panel emphasised the need to encourage patients with long-term effects of COVID-19 who have not been vaccinated to have the vaccination to reduce the risk of a further SARS CoV-2 infection, but to explain the uncertainty about the effect of vaccination on ongoing symptomatic COVID-19 and post-COVID-19 syndrome.

Recommendations

Give people information on COVID-19 vaccines (see NHS information on COVID-19 vaccines). Encourage them to follow current government guidance for vaccination to reduce the risk of a further acute infection but explain that it is not known if vaccines have any effect on ongoing symptomatic COVID-19 or post-COVID-19 syndrome.

Further national resources for support

  This content is derived from the Scottish Government's Implementation Support Note. 

Sources of direct advice and support [including psychosocial recovery support]


Resources on self management


Peer support (patient led and independent views expressed are their own)

  • Long Covid Scotland: signposts people with long-term effects of COVID-19 to support, advocacy, resources and opportunities to actively participate in research

Employment and return to work

Finding local community resources

SIGN Patient Information

SIGN, RCGP and NICE's patient booklet on Long COVID provides accessible information for people who have had acute COVID-19 and have ongoing signs and symptoms.

References

Full details of the evidence and the panel's discussion are in the evidence reviews on: