Long COVID (after 12 weeks) - Post COVID 19 Syndrome
NICE guidelines suggest that patient with COVID infection should be divided into 3 groups or stages.
- Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks. See Acute Assessment page.
- Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks. See the Long COVID (4-12 weeks) page.
- 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 (this page).
Stages 2 and 3 are also otherwise known as Long COVID.
This section will deal with the management of patients with Post COVID-19 Syndrome which is defined as signs and symptoms of COVID-19 that persist for more than 12 weeks following infection.
Long COVID in children
Please see the Long COVID in children page.
Health inequalities in Long COVID
It is recognised both locally and nationally that there are siginficant health inequalities in COVID -19. Clinicians should be mindful that some patient groups may need more help in accessing Long COVID services and support.
Primary Care Assessment
Patients with persistent symptoms after 12 weeks are less likely to have an acute deterioration related to COVID- 19 infection.
It is still important to be vigilant and look for other causes of symptoms that may or may not be related to COVID-19. Do not assume that ongoing symptoms are all due to COVID-19 and keep an open mind about other diagnoses.
Consider the following investigations in patients who continue to have symptoms:
Blood tests to include:
- FBC, TSH, HbA1c, U&E, LFT, CRP, TTG antibodies, Calcium, creatinine kinase (these tests are mandatory prior to referral to Long COVID clinic and are also listed on the CFS profile on ICE)
Also consider if symptoms indicate:
- Pulse oximetry - at rest. Also consider sit/stand or 40 step test to check for desaturation.
- Chest Xray - if there are persisting respiratory symptoms.
- D-dimer - only if acute pulmonary emobolism is suspected. (blanket testing of all patients is not advised).
- Spirometry or relaxed FVC (FVC < 80% predicted indicative of restriction).
- ECG - if there are cardiac symptoms or in patients who remain breathless.
- NT-proBNP - in patients with suspected heart failure and who are eligible - see NT-proBNP page.
- Echocardiogram - if NT-proBNP is raised*.
- (*If BNP slightly raised and normal ECHO then investigate for respiratory causes (mild elevation in BNP is non-specific and can be elevated for all sorts of reasons e.g. renal impairment etc)
You may also wish to refer to the NICE guidelines:
Self- help Resources
Your COVID Recovery
All patients should be directed to the Your Covid Recovery website produced by the NHS if this has not already been advised.
The site has advice for patients on self care and managing expectations during recovery.
There are pages that give advice on:
For patients who are unable to access this electronically, pages from the website can be downloaded and printed.
There is also advice about Your Road to Recovery including pacing and returning to work after COVID-19 and when further advice should be sought.
Paper versions of Your COVID Recovery and translation into different languages are currently being worked on nationally.
Hope Programme - Peer Support
The Hope programme is now available to patients with Long COVID across the South West (funded until June 2023).
The Hope programme is a 6 week facilitated course for patients that will support them in their self-management. Courses will run on a regular basis throughout this year.
It is advised that patients should only be directed to this programme if they have had screening tests to exclude other conditions (as above) and preferably should be referred to the Long COVID clinic initially, who can assess and then refer into this service if appropriate.
Further information about Hope and how to signpost patients can be found below:
Long COVID Clinic Referral
Community Long COVID SPA
The Community Long COVID SPA run by Sirona is a therapy service for patients with symptoms of Long Covid that persist for 12 weeks* or more following infection, which are significantly impacting on their ability to function in day to day life and who have not responded to initial self-care measures such as those suggested on the Your Covid Recovery website (see above).
Patients with specific physical symptoms should be investigated appropriately in primary care and referred to secondary care clinics if required.
It is particularly important that patients who are vulnerable or who can't access self -care resources are referred to this service.
The Long COVID SPA service may include,
- a baseline assessment of Long COVID symptoms,
- virtual or face to face clinic based assessment of needs,
- support with accessing the “Your Covid Recovery” platform and goal setting using shared decision making,
- referral or signposting to specialist services or sources of support,
- liaison with specialist MDT for more complex cases
Referral criteria for the Long COVID SPA (please be aware that these criteria may change)
- Patients with Long Covid symptoms who are still struggling to function after 12 weeks where signposting to self-management has not led to improvement (see Your Covid Recovery above).
- Patients should be appropriately assessed to exclude any underlying pathology before referral (see investigations listed in primary care assessment section above).
- At present, they are only able to accept referrals from GPs
Please note that there can be long waits for assessment within the Long Covid clinic* so please signpost your patient to YCR for support, or if requiring psychological support then please consider directing patients to VitaMinds.
Waiting Times - November 2022 update.
The current wait from referral being received by the Long COVID Clinic to a letter going out to patients is about 10 days. The patient must respond to this letter after which the wait for a clinic appointment is currently about 3-4 weeks.
IAPT Service Referrals
Patients can also be referred or self refer to IAPT services (Vita) who offer psychological support for patients with Long COVID who are struggling with mental health problems such as anxiety and depression.
ME/CFS Service Referrals
Patients with Long COVID may present with ME/CFS type symptoms. These patients should be referred to the Long COVID clinic SPA first who can then refer appropriate referrals on to this service. If a patient has previously been seen in Long COVID clinic then GPs can refer into the ME/CFS service if criteria are met.
Management of specific Long COVID symptoms
Fatigue following COVID infections is quite common but most patients will make a full recovery. The Your Covid Recovery website has some advice for patients on managing this symptom.
There is also some guidance for patients on 'Post viral fatigue - a guide to management' available from the British Association of CFS/ME which may be helpful.
If symptoms such as fatigue or cognitive dysfunction persist for more than 12 weeks then referral should be considered, particularly if the patient is not making acceptable progress despite following the self-management and rehabilitation advice above. These patients should be referred initially to the Community Long COVID clinic rather than the CFS/ME service.
Anxiety and Depression
Some patients who have had COVID-19 may suffer from psychological issues as a result of their illness. The Your Covid Recovery website has some advice for patients.
Several resources are available to patients and further information is available on the Mental Health Support for patients page.
Patients can also be referred to self refer to IAPT services (Vita).
See the Long COVID (4-12 week) page for advice about management of persistent respiratory symptoms following COVID-19.
Respiratory symptoms (cough and SOB) will generally improve quickly after mild COVID-19 infections but some patients who are more severely affected may be more at risk of longer term respiratory problems - particularly if they have had COVID pneumonia or other complications such as PE.
Patients who have been hospitalised may automatically be followed up by respiratory teams.
The Your Covid Recovery website also has some advice for patients on symptoms such as breathlessness and cough.
Please refer to the BNSSG Primary Care Assessment and Management of Adults with Persistent Symptoms Following COVID-like Illness for advice about management of cardiac complications as a result of COVID-19 infection.
Some patients may have longer term cardiac symptoms following COVID -19 infection including chest pain, palpitations, breathlessness and pre-syncope/syncope.
Patients should be investigated and managed according to these symptoms.
There is also some information on management of inappropriate tachycardia following COVID-19 on the PoTS page.
Consider using cardiology A and G or refer to cardilogy via eRS if there are ongoing concerns.
Change in sense of smell or taste is a symptom of acute COVID-19 and in most cases this symptom will recover within 3 weeks. In some patients anosmia may persist.
The Your Covid Recovery website has some advice for patients.
Please see the Anosmia page for advice on management including red flags and when to consider referral to ENT for this symptom.
Joint and Muscle pain
Some patients will experience persisting joint and muscle pain or stiffness - particularly if they have been hospitalised. The Your Covid Recovery website has some advice for patients.
Patients should be encouraged to gradually increase physical activity and/or exercise balanced with rest but if problems persist then a physiotherapy referral should be considered.
If there is persisting joint swelling for more than 4 weeks then consider a diagnosis of early inflammatory arthritis, and referral to EIA clinic if criteria are met.
Prescribing for Long COVID
The management of patients with Long COVID will usually focus on lifestyle factors, pacing and psychological support.
There may be times, however, when medication may have a role to play in managing symptoms. As this is still a relatively new disease the evidence for use of medications in Long COVID is still being collected and therefore most of the medications that are suggested are off licence and/or non- formulary in BNSSG.
The Long COVID clinic team will sometimes ask GPs to consider prescribing, or patients may have done their own research and request medication. Prescribers should consider the BNSSG Non- formulary and un-licensed medication guide when deciding when to prescribe.
Update September 2022 - The BNSSG formulary team and Long COVID clinic team are in the process of reviewing some of the medications being used in patients Long COVID with a view to adding them to the formulary. We hope to have further updates on Remedy and in the BNSSG Formulary soon.
Returning to work
The Faculty of Occupational Medicine has published guidance for health care professionals and employers to help them facilitate the return to work of people who have long-COVID. This includes:
- Guidance for healthcare professionals on return to work for patients with long-COVID
- Guidance for managers and employers on facilitating return to work of employees with long-COVID
The guidance works on the principle that work is generally good for health and gives practical steps that health care professionals can use when making decisions about fitness to return, including certification.
Health and Social care workers with Long COVID
Health and Social Care workers who are affected by Long COVID may be able to access additional support. Referrals should still be made via the Long COVID SPA where patients will be assessed and directed to to this service if appropriate.
For more information see the Healthier Together- Long COVID group page.
RCGP COVID-19 Resource Hub - includes Post COVID Syndrome section