What is Post-COVID syndrome / Long COVID?
Emerging evidence and patient testimony is showing a growing number of people who contract COVID-19 cannot shake off the effects of the virus months after initially falling ill. Symptoms are wide-ranging and fluctuating, and can include breathlessness, chronic fatigue, “brain fog”, anxiety and stress.
The NICE guideline scope published on 30 October 2020 defines post-COVID syndrome as signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis. The definition says the condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body. It also notes that many people with post-COVID syndrome can also experience generalised pain, fatigue, persisting high temperature and psychiatric problems.
While we have learned lots about COVID-19 since the start of the pandemic – and new treatments are available – the long term effects of the illness can be debilitating, even for young, fit people, or those who did not go to hospital when they had COVID-19 symptoms initially.
The exact number of people experiencing Long COVID symptoms is unclear. Research into the prevalence of the illness is ongoing, but there are currently an estimated 60,000 people in the UK thought to be experiencing Long COVID, although this is likely to be higher and will grow as coronavirus infection rates rise.
If you are experiencing symptoms of Long COVID please speak to your GP.
NHS England and NHS Improvement’s 5-Point plan for Long COVID support
In October 2020, Sir Simon Stevens announced a five-part package of measures to boost NHS support for patients experiencing long-term effects of COVID-19. The package includes:
- New guidance commissioned by us from NICE on the clinical case definition of Long COVID. This includes patients who have had COVID who may not have had a hospital admission or a previous positive test. It will be followed by evidence-based NICE clinical guidelines on the support that Long COVID patients should receive, due to be published by the end of the year.
- The second phase of the Your COVID Recovery platform – an online, tailored rehabilitation programme that enables patients to be monitored by their local rehabilitation teams to ensure that they are on track with their care.
The Your COVID Recovery public facing information website launched in July 2020, providing general information on all aspects of recovering from COVID-19 including physical, emotional and psychological wellbeing, advice on recovery and information for families and carers.
- Designated post-COVID assessment services. Additional funding of £10 million is to be invested this year to set up specialist post-COVID assessment services across England, to complement existing primary, community and rehabilitation care.
- National Institute for Health Research (NIHR) funded research on Long COVID to better understand the condition and refine appropriate treatment.
- An NHS Long COVID taskforce which includes patients with Long COVID, medical specialists and researchers.
The National Institute for Clinical Excellence (NICE) has issued official guidance on best practice for recognising, investigating and rehabilitating patients with long COVID. The guideline makes recommendations in a number of other key areas, including:
- Assessing people with new or ongoing symptoms after acute COVID-19
- Investigations and referral
- Planning care
- Management, including self-management, supported self-management, and rehabilitation
- Follow-up and monitoring
- Service organisation
The guideline also includes a number of key recommendations for research which will help inform and enhance future versions as evidence and practice develops.
Your COVID Recovery
Your COVID Recovery is one element of the five-part package of measures to boost NHS support for Long COVID patients. It offers a digital, interactive and tailored recovery and rehabilitation programme that has been developed by experts to provide rehabilitation support for post-COVID patients to manage their recovery at home.
The Your COVID Recovery online rehabilitation programme is available for systems to register as a service and access the training required to refer patients into the programme. Guidance on the platform has been published and you can register your service and request the training via: firstname.lastname@example.org
The public facing information website provides general information on all aspects of recovering from COVID-19 including physical, emotional and psychological wellbeing, advice on recovery and information for families and carers.
Post-COVID assessment services
We have invested £10 million in additional local funding to help kick start and designate post-COVID assessment services in every area across England, designed to complement existing primary, community and rehabilitation care. There will be a number of different ways that these services are implemented depending on the needs of local patients, and the configuration of existing services but every service will meet the guidance to assist local healthcare systems to establish post-COVID assessment services
Across the NHS in England, 69 initial assessment services are supporting people with post-COVID syndrome (Long COVID).
These services are assessing and diagnosing people experiencing long term health effects as a result of COVID-19 infection, whether they have had a positive SARS-CoV-2 test or are likely to have Long COVID based on their clinical symptoms, and regardless of whether they were admitted to hospital during their COVID-19 illness. The services offer physical, cognitive and psychological assessment, and, where appropriate, refer patients onto existing services for treatment and rehabilitation.
People who think they may be experiencing persistent or long-term effects of COVID-19 infection are advised to contact their GP, who will determine the appropriate course of action.
Post-COVID assessment services are currently operating in the following organisations:
- Oxford University Hospitals NHS Foundation Trust
- Royal Berkshire NHS Foundation Trust – Berkshire Long COVID Integrated Service
- Buckinghamshire Healthcare NHS Foundation Trust
- Virgin Care Services Limited and Frimley Health NHS Foundation Trust
- Berkshire Healthcare NHS Foundation Trust
- Royal Surrey County Hospital
- East Surrey – First Community Health and Care
- Community Surrey Health Surrey and Ashford and St Peter’s Hospital
- Surrey Downs Health and Care Partnership
- East Sussex Healthcare NHS Trust
- Sussex Community NHS Foundation Trust
- East Suffolk and North Essex NHS Foundation Trust
- Milton Keynes University Hospital NHS Foundation Trust
- Cambridge University Hospitals NHS Foundation Trust
- Mid and South Essex- Provide Community Interest Company
- Hertfordshire Community Service Health Care Trust
- Essex Partnership University NHS Foundation Trust
- Norfolk Community Health and Care Trust
- Liverpool University Foundation Hospital Trust
- Manchester Foundation Trust (Manchester Royal Infirmary, Wythenshawe Hospital)
- North Care Alliance (Salford Royal Foundation Trust, Royal Oldham Hospital)
- North Manchester General
- Tameside and Glossop Integrated Trust
- Stockport NHS Foundation Trust
- Wrightington Wigan and Leigh Foundation Trust
- Bolton NHS Foundation Trust
- Lancashire and South Cumbria NHS Foundation Trust
- North Cumbria Integrated Care Foundation Trust
- The Newcastle upon Tyne Foundation Hospitals Trust
- Northumbria Healthcare Foundation Trust
- County Durham and Darlington Foundation Trust
- North Tees and Hartlepool Foundation Trust
- South Tees Hospitals Foundation Trust
- York Teaching Hospital HS Foundation Trust
- Harrogate and District NHS Foundation Trust
- North Lincolnshire and Goole NHS Foundation Trust
- Hull University Teaching Hospitals NHS Trust
- Sheffield Teaching Hospitals Foundation Trust
- The Rotherham NHS Foundation Trust
- Barnsley Healthcare Federation
- Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust
- Bradford Teaching hospitals NHS Foundation Trust
- Leeds Teaching Hospitals NHS Trust
- The Mid Yorkshire Hospital NHS Trust
- Calderdale and Huddersfield NHS Foundation Trust
- University Hospitals Coventry and Warwickshire NHS Trust
- Worcestershire Acute Hospitals NHS Trust
- Shropshire Community Health Trust
- Birmingham Community Healthcare Trust
- Dudley Group NHS Foundation Trust
- Walsall Healthcare NHS Trust
- The Royal Wolverhampton NHS Trust
- Northamptonshire Healthcare NHS Foundation Trust, Northampton General Hospital, Kettering General Hospital
- University Hospitals Leicester NHS Trust and Provider Company Ltd arm of the Leicester, Leicestershire and Rutland Alliance
- Bath, Swindon and Wiltshire – Wiltshire health and care
- Bristol, North Somerset and South Gloucestershire – Sirona Care and Health
- Gloucestershire Hospitals Foundation Trust
- Gloucestershire Health and Care Foundation Trust
- University College London Hospital Trust
- Homerton University Hospital Foundation Trust (Homerton University Hospital)
- Barts Health NHS Trust, (Royal London Hospital and St Bartholomew’s Hospital)
- Barking, Havering and Redbridge University Hospitals NHS Trust (King George Hospital)
- London North West University Healthcare NHS Trust (Northwick Park Hospital)
- Imperial College Healthcare NHS Trust (St Mary’s Hospital)
- Chelsea and Westminster Hospital NHS Trust (Chelsea and Westminster Hospital)
- Kings Health Partners (Guys and St Thomas NHS Foundation Trust – St Thomas’ Hospital)
- Kings Health Partners (Kings College Health Foundation Trust- King’s College Hospital)
- St Georges NHS Trust (St. George’s Hospital)
The Long COVID Taskforce brings together patient representatives, clinicians, researchers, charities and others to advise and support implementation of the Long COVID 5-point plan.
The taskforce aims to advise on the implementation of Long COVID specialist assessment services, as well as supporting communications to staff and people with Long COVID to develop a wider understanding of the condition.
The group meets monthly, with four sub-groups set up to make progress in specific areas of Long COVID that meet more frequently, there areas are post-COVID assessment services, Your COVID Recovery, research and information and guidance for clinicians, commissioners and providers.