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.
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.
In June 2021, Simon Stevens announced a further package of support for long COVID for 21/22. The Long COVID Plan 21/22 builds on the five-point plan outlined above and outlines 10 key next steps to be taken to support those suffering from long COVID.
It is underpinned by a £100 million investment, £30 million of which will go towards an enhanced service for general practice to support long COVID care, and enable consistent referrals. The remaining £70 million will be used to expand other NHS long COVID services and establish 15 ‘paediatric hubs’ to coordinate care for children and young people.
The plan also highlights the need for equity of access, outcomes and experience in long COVID support, as well as committing to extending the Your COVID Recovery website, collecting and publishing data.
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, 89 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:
- East Suffolk and North Essex NHS Foundation Trust
- Essex Partnership University NHS Foundation Trust
- Hertfordshire Community NHS Trust
- Mid and South Essex NHS Foundation Trust
- Norfolk Community Health and Care NHS Trust
- Herts Valley (Hemel Hempstead Hospital)
- Cambridge University Hospital NHS Foundation Trust
- Norfolk Community Health and Care NHS Trust
- Barking Havering and Redbridge University Hospitals NHS Trust
- Chelsea and Westminster Hospital NHS Trust
- Homerton University Hospital NHS Foundation Trust
- Imperial College Healthcare NHS Trust
- London North West University Healthcare Trust
- St George’s University Hospitals Foundation Trust
- University College London Hospitals NHS Foundation Trust
- Croydon Health Services NHS Trust
- Epsom and St Helier University Hospitals NHS Trust
- Kingston Hospital
- North East London Foundation Trust
- King’s College Hospital NHS Foundation Trust
- Guys and St Thomas NHS Foundation Trust
- East London Foundation Trust
- Birmingham Community Healthcare NHS Foundation Trust
- Northamptonshire Healthcare NHS Foundation Trust
- Shropshire Community Health NHS Trust
- The Dudley Group NHS Foundation Trust
- The Royal Wolverhampton NHS Trust
- University Hospitals Coventry and Warwickshire NHS Trust
- University Hospitals Leicester NHS Trust
- Worcestershire Acute Hospitals NHS Trust
- Derbyshire Community Health Services NHS Foundation Trust
- Lincolnshire Community Health Services NHS Trust
- South Warwickshire NHS Foundation Trust
- George Eliot Hospital NHS Trust
- Midlands Partnership NHS Foundation Trust
- Nottinghamshire Healthcare Trust and Nottingham CityCare Partnership
- Sandwell and West Birmingham Hospitals NHS Trust
- Walsall Healthcare NHS Trust
- Barnsley Healthcare Federation CIC
- Bradford Teaching Hospital NHS Foundation Trust
- Calderdale and Huddersfield NHS Foundation Trust
- County Durham and Darlington NHS Foundation Trust
- Harrogate and District NHS Foundation Trust
- Humber Long COVID Triage and Assessment Service, hosted by City Healthcare Partnership, covering Hull University Teaching Hospital and North Lincolnshire and Goole
- Leeds Community Healthcare NHS Trust
- Mid Yorkshire Hospitals NHS Trust
- NHS Bassetlaw CCG
- North Cumbria Integrated Care NHS Foundation Trust
- North Tees and Hartlepool NHS Foundation Trust
- Northumbria Healthcare NHS Foundation Trust
- Sheffield Teaching Hospitals NHS Foundation Trust
- South Tees Hospital NHS Foundation Trust
- The Newcastle Upon Tyne Hospitals NHS Foundation Trust
- York Teaching Hospital NHS Foundation Trust
- Gateshead Health NHS Foundation Trust
- South Tyneside and Sunderland NHS Foundation Trust
- Mid Yorkshire Hospitals NHS Trust
- Kirklees Local Post COVID Assessment Clinic
- Doncaster Place
- Bolton NHS Foundation Trust
- Lancashire and South Cumbria NHS Foundation Trust
- Liverpool University Hospitals NHS Foundation Trust
- Manchester University NHS Foundation Trust
- Salford Royal NHS Foundation Trust
- Stockport NHS Foundation Trust
- Tameside and Glossop Integrated Care NHS Foundation Trust
- Wrightington, Wigan and Leigh NHS Foundation Trust
- Pennine Acute Hospitals NHS Trust
- Ashford and St Peter’s Hospital NHS Foundation Trust and Central Surrey Health
- Buckinghamshire Healthcare NHS Trust
- East Sussex Healthcare NHS Trust
- First Community Health and Care CIC
- Frimley Health NHS Foundation Trust
- Oxford University Hospitals NHS Foundation Trust
- Royal Berkshire NHS Foundation Trust
- Royal Surrey County Hospital NHS Foundation Trust
- Surry Downs Health and Care Partnership
- Sussex Community NHS Foundation Trust
- Isle of Wight NHS Trust
- Solent NHS Trust
- Southern Health NHS Foundation Trust
- Maidstone and Tunbridge Wells NHS Trust
- Gloucestershire Health and Care NHS Foundation Trust
- Sirona Health and Care
- Wiltshire Health and Care
- Dorset Healthcare University NHS Foundation Trust
- Livewell South West, including University Hospitals Plymouth NHS Trust, Royal Devon and Exeter NHS Trust, Northern Devon Healthcare NHS Trust, and Torbay and South Devon NHS Foundation Trust
- NHS Somerset CCG
- Royal Cornwall Hospitals NHS Trust
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.