Long Covid NICE Rapid Guideline

NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19 [NG 188] Last updated 25 January 2024

• Some people who have had COVID-19 do not get better as quickly as expected, even those who were not severely ill.
• Many people are finding they are still unwell more than 4 weeks after the start of their infection, and some develop new problems over several weeks.
• Long COVID is one term that has been used to describe these symptoms, which can change and come and go over time.
• Long COVID is very new and not much is known about it, which can make it hard for people to get care when they need it and for healthcare professionals to know how best to help people.
• To tackle this, NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) have worked together on this guideline.
• We will keep updating this guideline as we find out more about long COVID.

• NICE, RCGP and SIGN have produced a booklet about Long COVID that gives more detail about what the guideline says about care for people with long COVID. The information covers:
  • What long COVID is and how to tell if you have it.
  • How symptoms will be assessed and tests you might be offered.
  • How your care will be planned, and who will be involved.
  • What may help your symptoms, including things you can do yourself or how rehabilitation could help.
  • Follow-up appointments.
  • Where to find more information.

• See also, the SIGN long COVID Patient Information app.

• Decisions about treatment and care are best when they are made together.
• Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.
• If you can’t understand any of the information you are given, tell your healthcare professional.
• Read more about making decisions about your care.

• The NHS website and Your COVID Recovery website have more information about the long-term effects of COVID-19.
• Download the full NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19 as a PDF or view it online.

• The organisations below can give you more advice and support.
  • British Lung Foundation, 03000 030 555
  • COVID AID, hello@covidaidcharity.org
  • Long COVID kids, info@longcovidkids.org
  • Long COVID Physio, https://longcovid.physio/contact
  • Long COVID SOS, info@longcovidSOS.org
  • Long Covid Support, info@longcovid.org
  • NICE is not responsible for the content of these websites.
• We wrote this guideline with people who have been affected by long COVID and staff who treat and support them. All the decisions are based on the best research available.
• To share an experience of care you have received, contact your local Healthwatch or email the ME Association: feedback@meassociation.org.uk
• You will find additional support and information by getting in touch with the ME Association's ME Connect service.

The NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19 [NG188] Last updated 25 January 2024

• This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’.
• It makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.
• This guideline has been developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).

• On 25 January 2024, we transferred the guideline from the MAGICapp platform to the NICE website, changing the presentation. The recommendations are unchanged. 

• On 11 November 2021: We made new recommendations and updated existing recommendations on identification; planning care; multidisciplinary rehabilitation; follow up, monitoring and discharge; and service organisation. We also updated the list of common symptoms, emphasising that these may be different for children.

Guideline development process

• This guideline uses the methods and process in NICE's interim process and methods for guidelines developed in response to health and social care emergencies.

• This guideline was developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).

Your responsibility

• The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available:
  • When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service.
  • It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
• All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

• Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it:
  • They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
  • Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
• Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Use the following clinical case definitions to identify and diagnose the long-term effects of COVID-19:

• Acute COVID-19
  • Signs and symptoms of COVID‑19 for up to 4 weeks.

• Ongoing symptomatic COVID-19
  • Signs and symptoms of COVID‑19 from 4 weeks up 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.
  • It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 (from 4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or more).

1.2 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 the section on common symptoms).
• what they might expect during their recovery, including that:
  • recovery time is different for everyone but for most people symptoms will resolve by 12 weeks
  • the likelihood of developing ongoing symptomatic COVID-19 or post-COVID-19 syndrome is not considered 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 fluctuate, affecting them in different ways at different times.
• how to self-manage ongoing symptomatic COVID‑19 or post‑COVID‑19 syndrome (see the recommendations on self-management and supported self-management).
• 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 it is more than 4 weeks after the start of acute COVID‑19.

1.3 Give people information on COVID-19 vaccines (see NHS information on COVID-19 vaccines):

• Encourage them to follow current government guidance for vaccination but explain that it is not known if vaccines have any effect on ongoing symptomatic COVID-19 or post-COVID-19 syndrome.

1.4 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 example:
  • NICE’s guidelines on patient experience in adult NHS services and shared decision making
  • Healthcare Improvement Scotland's website ‘What Matters To You’
  • NHS England's Accessible information standard.
• NICE, RCGP and SIGN's patient booklet on Long COVID provides accessible information for people who have had acute COVID-19 and have ongoing signs and symptoms.

1.5 For people with new or ongoing symptoms after acute COVID‑19, suspect:

• ongoing symptomatic COVID-19 if people present with symptoms 4 to 12 weeks after the start of acute COVID‑19 or
• post-COVID-19 syndrome if the person’s symptoms have not resolved 12 weeks after the start of acute COVID‑19.

1.6 For people who are experiencing new or ongoing symptoms 4 weeks or more after acute COVID‑19, offer an initial consultation and use shared decision making to discuss and agree with the person whether it should be remote or in person.

1.7 Consider using a screening questionnaire as part of the initial consultation to help capture all of the person’s symptoms. These should only be used in conjunction with clinical assessment.

1.8 Need for further assessment and referral

• Based on the initial consultation, use shared decision making to discuss and agree with the person whether they need a further assessment and whether this should be remote or in person.
• Take into account whether they may have symptoms that need investigating in person or require urgent referral to an appropriate service.

1.9 Support access to assessment and care for people with new or ongoing symptoms after acute COVID‑19, particularly for those in underserved or vulnerable groups who may have difficulty accessing services, for example by:

• providing extra time or additional support (such as an interpreter or advocate) during consultations.
• raising awareness about possible new or ongoing symptomatic COVID‑19 or post-COVID-19 syndrome – this may include working with local community leaders or organisations – particularly in vulnerable groups and black, Asian and minority ethnic groups.
• See the equality impact assessment for more information about the equality issues considered.

Proactive follow-up after acute Covid-19

1.10 Consider follow up by primary care or community services for people in vulnerable or high‑risk groups who have self‑managed in the community after suspected or confirmed acute COVID‑19. 

1.11 A healthcare professional in secondary care should offer a follow‑up consultation at 6 weeks after discharge to people who have been in hospital with acute COVID‑19 to check for new or ongoing symptoms or complications.

These recommendations are for healthcare professionals assessing people in any healthcare setting, 4 weeks or more after the start of suspected or confirmed acute COVID-19.

2.1 For people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome who have been identified as needing an assessment, use a holistic, person-centred approach. Include a comprehensive clinical history and appropriate examination that involves assessing physical, cognitive, psychological and psychiatric symptoms, as well as functional abilities.

Include in the comprehensive clinical history:

• history of acute COVID-19 (suspected or confirmed)
• the nature and severity of previous and current symptoms
• timing and duration of symptoms since the start of acute COVID-19
• history of other health conditions
• exacerbation of pre-existing conditions.

These recommendations are for healthcare professionals assessing people in any healthcare setting, 4 weeks or more after the start of suspected or confirmed acute COVID-19.

2.2 Be aware that people can have wide-ranging and fluctuating symptoms after acute COVID‑19, which can change in nature over time (see info box below).

2.3 Discuss the person’s experience of their symptoms and how their life and activities have been affected, including work, education, mobility and independence. Ask about any feelings of worry or distress. Listen to their concerns with empathy and acknowledge the impact on their day-to-day life. 

2.4 For people who may benefit from support during their assessment, for example, to help describe their symptoms, include a family member or carer in discussions if the person agrees.

2.5 Do not predict whether a person is likely to develop post‑COVID‑19 syndrome based on whether they had certain symptoms (or clusters of symptoms) or were in hospital during acute COVID‑19.

2.6 If the person reports new cognitive symptoms, use a validated screening tool to measure any impairment and impact.

These recommendations are for healthcare professionals carrying out initial investigations in primary care or community services for people with new or ongoing symptoms 4 weeks or more after the start of suspected or confirmed acute COVID-19. See the NICE guideline on shared decision making for advice on how to make appropriate investigations and referrals.

3.1 Offer tests and investigations tailored to people’s signs and symptoms to rule out acute or life‑threatening complications and find out if symptoms are likely to be caused by ongoing symptomatic COVID‑19, post‑COVID‑19 syndrome or could be a new, unrelated diagnosis.

3.2 Refer people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome urgently to the relevant acute services if they have signs or symptoms that could be caused by an acute or life‑threatening complication, including (but not limited to):

• hypoxaemia or oxygen desaturation on exercise.
• signs of severe lung disease.
• cardiac chest pain.
• paediatric inflammatory multisystem syndrome – temporally associated with SARS-CoV-2 (PIMS-TS).

3.3 If another diagnosis unrelated to COVID-19 is suspected, offer investigations and referral in line with relevant national or local guidance.

3.4 Decisions about blood tests should be guided by the person's symptoms. If clinically indicated, offer blood tests, which may include:

• a full blood count,
• kidney and liver function tests,
• C‑reactive protein,
• ferritin, B‑type natriuretic peptide (BNP),
• HbA1c,
• thyroid function tests. 

3.5 Consider supported self-monitoring at home, if this is agreed through shared decision making as part of the person’s assessment.

• This may include heart rate, blood pressure, pulse oximetry or symptom diaries.
• Ensure that people have clear instructions on how to use any equipment and parameters for when to seek further help.

Be aware that some pulse oximeters can underestimate or overestimate oxygen saturation levels, especially if the saturation level is borderline. Overestimation has been reported in people with dark skin. For more information about this, see NHS England's guide on how to look after yourself at home if you have COVID-19 or symptoms of COVID-19.

3.6 If appropriate, offer an exercise tolerance test suited to the person’s ability (for example, the 1‑minute sit‑to‑stand test).

• During the exercise test, record level of breathlessness, heart rate and oxygen saturation.
• Follow an appropriate protocol to carry out the test safely (see the rationale for suggested protocols). 

3.7 For people with postural symptoms, for example palpitations or dizziness on standing:

• carry out lying and standing blood pressure and heart rate recordings (3‑minute active stand test for orthostatic hypotension, or, 10 minutes if you suspect postural tachycardia syndrome, or other forms of orthostatic intolerance).

3.8 Offer a chest X-ray by 12 weeks after acute COVID-19 only if the person has continuing respiratory symptoms and it is clinically indicated.

• Chest X-ray appearances alone should not determine the need for referral for further care. 
• Be aware that a normal plain chest X-ray does not rule out lung disease.

3.9 Refer people with ongoing symptomatic COVID-19 or suspected post‑COVID‑19 syndrome urgently for psychiatric assessment if they have severe psychiatric symptoms or are displaying high risk of self‑harm or suicide.

3.10 Follow relevant national or local guidelines on referral for people who have anxiety and mood disorders or other psychiatric symptoms. Consider referral:

• for psychological therapies if they have common mental health symptoms, such as symptoms of mild anxiety and mild depression or
• to a liaison psychiatry service if they have more complex needs (especially if they have a complex physical and mental health presentation).

3.11 After ruling out acute or life-threatening complications and alternative diagnoses, consider referring people to an appropriate service, such as an integrated multidisciplinary assessment service, any time from 4 weeks after the start of acute COVID‑19.

• Many people experience a spontaneous improvement in symptoms between 4 and 12 weeks after the start of acute COVID‑19 and should be offered self-management support and monitoring during this time, with consideration of onward referral to further services if they do not improve.
• People with concerning symptoms during this time may need referral for assessment by acute medical services.

3.12 Do not exclude people from referral to an integrated multidisciplinary assessment service or for further investigations or specialist input based on the absence of a positive SARS‑CoV‑2 test (PCR, antigen or antibody) as long as the case definition criteria are met.

These recommendations are for healthcare professionals caring for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome who have been assessed in primary care or a multidisciplinary assessment service.

• Full details of the evidence and the panel's discussion are in the evidence reviews on interventions and monitoring and referral.

4.1 After the holistic assessment, discuss with the person (and their family or carers, if appropriate) the options available and what each involves. These should include:

• advice on self-management, with the option of supported self‑management (see the section on self-management and supported self-management) and
• one or more of the following, depending on clinical need and local pathways:
  • support from integrated and coordinated primary care, community, rehabilitation and mental health services
  • referral to an integrated multidisciplinary assessment service
  • referral to specialist care for specific complications.

4.2 Use shared decision making to agree what support and rehabilitation the person needs, including how and when it should be provided.

4.3 When discussing with the person the appropriate level of support and management:

• take account of the overall impact their symptoms are having on their life and usual activities, even if each individual symptom alone may not warrant referral
• look at the overall trajectory of their symptoms, taking into account that symptoms often fluctuate and recur so they might need different levels of support at different times.

For advice on working with people to make decisions about their treatment and care, see NICE's guidelines on shared decision making and decision-making and mental capacity and Healthcare Improvement Scotland's What Matters To You website.

These recommendations are for healthcare professionals providing care for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome in primary care and community settings or in multidisciplinary assessment and rehabilitation services.

5.1.1 Give advice and information on self-management to people with ongoing symptomatic COVID‑19 or post‑COVID‑19 syndrome, starting from their holistic assessment. This should include:

• ways to self-manage their symptoms, such as setting realistic goals
• who to contact if they are worried about their symptoms or they need support with self‑management
• sources of advice and support, including support groups, social prescribing, online forums and apps
• how to get support from other services, including social care, housing and employment, and advice about financial support
• information about new or continuing symptoms of COVID-19 that the person can share with their family, carers and friends (see the section on common symptoms).

Advice for patients on managing common symptoms is available from the Your COVID Recovery website and NHS inform website.

5.1.2 Explain that it is not known if over-the-counter vitamins and supplements are helpful, harmful or have no effect in the treatment of new or ongoing symptomatic COVID‑19 or post-COVID-19 syndrome.

5.1.3 Support people in discussions with their school, college or employer about returning to education or work, for example by having a phased return.

• For advice on returning to work, follow national guidance, for example NICE’s guideline on workplace health: long-term sickness absence and capability to work.

5.2.1 Use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management.

• Ensure that any symptoms that could affect the person being able to start rehabilitation safely have been investigated first.
• See also the recommendation on multidisciplinary rehabilitation teams in section 8 on service organisation.

5.2.2 Work with the person (and their family or carers, if appropriate) to develop a personalised rehabilitation and management plan that is recorded in a rehabilitation prescription and should include:

• areas of rehabilitation and interventions based on their assessment,
• helping the person to decide and work towards goals,
• how to manage and monitor their symptoms, taking into account that these may fluctuate, and what to do if symptoms return or change.

5.2.3 Provide extra time or additional support (such as an interpreter or advocate) to people who would benefit during their consultations.

5.2.4 Encourage people to keep a record of, or use a tracking app to monitor, their goals, recovery and any changes in their symptoms

• See also section 6 on follow up, monitoring and discharge.

5.3.1 Consider additional support for people with ongoing symptomatic COVID‑19 or post‑COVID‑19 syndrome who may be vulnerable, for example, older people and people with complex needs:

• Additional support may include short‑term care packages, advance care planning and support with social isolation, loneliness and bereavement, if relevant.

5.3.2 Consider referral from 4 weeks for specialist advice for children and young people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome.

These recommendations are for healthcare professionals providing care for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome in any setting, including primary care and community settings, secondary care and rehabilitation services.

6.1 Use shared decision making to decide how often follow up and monitoring are needed, which healthcare professionals should be involved and whether appointments should be carried out in person or remotely. Take into account: 

• the person’s needs and the services involved
• the person's symptoms, including new or worsening symptoms, and the effects of these on the person’s life and wellbeing
• availability, clinical suitability and the person's preferences for in-person or remote appointments.

6.2 Be alert to symptoms developing that could mean referral or investigation is needed, following recommendations in the section on assessment.

6.3 Use shared decision making to discuss and agree plans for discharge from rehabilitation and care, taking into account the person’s preferences, goals and social support.

• Follow local referral pathways to enable re-referral if needed.

7.1 Ensure effective information sharing and integrated working by sharing clinical records and care and rehabilitation plans promptly between services and through multidisciplinary meetings, either virtual or in person.

7.2 Give people a copy of their care plans or records to keep, including their discharge letters, clinical records and rehabilitation plans and prescriptions.

7.3 Include baseline measures as well as ongoing assessments in information shared between services, including when the person is discharged from hospital. For example, resting oxygen saturation and heart rate, and the results of functional assessment.

7.4 Provide continuity of care with the same healthcare professional or team as much as possible, for example, by providing a care coordinator or a single point of contact.

8.1 Provide access to multidisciplinary services, if available, (these could be ‘one-stop’ clinics) for assessing physical and mental health symptoms and carrying out further tests and investigations.

• Services should be led by a doctor with relevant skills and experience and appropriate specialist support, taking into account the variety of presenting symptoms.

8.2 Provide integrated, multidisciplinary rehabilitation services, based on local need and resources.

• Healthcare professionals should have a range of specialist skills, with expertise in managing fatigue and respiratory symptoms (including breathlessness).
• Additional expertise may be needed depending on the age and symptoms of the person.
• The core team could include, but not be limited to, the following specialist areas:
  • occupational therapy
  • physiotherapy
  • clinical psychology and psychiatry
  • rehabilitation medicine.

• Other areas of expertise could also include, but are not limited to, rheumatology, neurology rehabilitation, cardiology, paediatrics, dietetics, speech and language therapy, nursing, pharmacy, social care and support to return to education or work or usual activities. 

8.3 Share knowledge, skills and training between services to help practitioners in the community provide assessments and interventions, such as 1‑minute sit‑to‑stand tests and breathlessness training.

8.4 Agree local, integrated referral pathways between primary and community care, rehabilitation services and specialist services, multidisciplinary assessment clinics (where available) and specialist mental health services.