Post-COVID syndrome (long COVID)

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 long-term effects of COVID-19 are often referred to interchangeably as long COVD and post COVID syndrome. The National Institute for Clinical Excellence (NICE)/Scottish Intercollegiate Guidelines Network/Royal College of General Practitioners guidance on managing long-term effects of COVID-19 (updated November 2021) gives the following clinical definitions below:

  • ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from four to 12 weeks
  • post COVID-19 syndrome: signs and symptoms that develop during or after COVID-19 and continue for more than 12 weeks and are not explained by an alternative diagnosis.

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.

If you are experiencing symptoms of long COVID please speak to your GP.

The NHS plan for improving long COVID services

The NHS plan for improving long COVID services provides an update on progress on the 10 actions set out in the NHS long COVID plan for 2021-22, and outlines the framework for deploying the £90m funding committed by the NHS for long COVID services during the 2022/23 financial year.

The plan has been developed with expert insights from those with lived experience of long COVID, clinicians and partners across the health and care system. It builds on the significant progress made over the past 2 years and sets out action to ensure support is there for everyone who needs it, and patients requiring specialist assessment and treatment can access care in a timely way.

NICE guidelines

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: yourcovidrecovery@uhl-tr.nhs.uk

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 services

Since 2020, the NHS has established post COVID services across England for both adults and children and young people.

These multidisciplinary services include physical, cognitive and psychological assessments, diagnostic tests, and management or appropriate onward referral to post COVID rehabilitation, treatment and other support.

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.

As of 1st April 2023, the following organisations provide post COVID services for adults:

East of England

  • Cambridgeshire and Peterborough NHS Foundation Trust
  • Central London Community Healthcare NHS Trust (Herts Valleys)
  • East Suffolk and North Essex NHS Foundation Trust
  • Essex Partnership University NHS Foundation Trust
  • Hertfordshire Community NHS Trust
  • Norfolk Community Health and Care NHS Trust
  • Provide
  • Whaddon Medical Centre

London

  • Barking, Havering and Redbridge University Hospitals NHS Trust
  • Chelsea and Westminster Hospital NHS Foundation Trust
  • Croydon Health Services NHS Trust
  • East London NHS Foundation Trust
  • Epsom and St Helier University Hospitals NHS Trust
  • Guy’s And St Thomas’ NHS Foundation Trust
  • Homerton Healthcare NHS Foundation Trust
  • Imperial College Healthcare NHS Trust
  • King’s College Hospital NHS Foundation Trust (Denmark Hill and The Princess Royal University Hospital)
  • Kingston Hospital NHS Foundation Trust
  • London North West University Healthcare NHS Trust
  • North East London NHS Foundation Trust
  • St George’s University Hospitals NHS Foundation Trust
  • University College London Hospitals NHS Foundation Trust

Midlands

  • Birmingham Community Healthcare NHS Foundation Trust
  • Derbyshire Community Health Services NHS Foundation Trust
  • George Eliot Hospital NHS Trust
  • Herefordshire and Worcestershire Health and Care Trust (Malvern Community Hospital)
  • Lincolnshire Community Health Services NHS Trust
  • Midlands Partnership NHS Foundation Trust
  • Northamptonshire Healthcare NHS Foundation Trust
  • Nottingham CityCare Partnership
  • Nottinghamshire Healthcare NHS Foundation Trust
  • Sandwell And West Birmingham Hospitals NHS Trust
  • Shropshire Community Health NHS Trust
  • South Warwickshire University NHS Foundation Trust
  • The Dudley Group NHS Foundation Trust
  • The Royal Wolverhampton NHS Trust
  • University Hospitals Birmingham NHS Foundation Trust
  • University Hospitals Coventry and Warwickshire NHS Trust
  • University Hospitals of Leicester NHS Trust
  • Walsall Healthcare NHS Trust

North East and Yorkshire

  • Airedale NHS Foundation Trust
  • Calderdale and Huddersfield NHS Foundation Trust
  • City Health Care Partnership CIC
  • County Durham and Darlington NHS Foundation Trust
  • Gateshead Health NHS Foundation Trust
  • Harrogate and District NHS Foundation Trust
  • Hull University Teaching Hospitals NHS Trust
  • Leeds Community Healthcare NHS Trust
  • Locala Community Partnerships CIC
  • Mid Yorkshire Hospitals NHS Trust
  • North Cumbria Integrated Care NHS Foundation Trust
  • North Tees and Hartlepool NHS Foundation Trust
  • Northern Lincolnshire and Goole NHS Foundation Trust
  • Northumbria Healthcare NHS Foundation Trust
  • Rotherham Doncaster and South Humber NHS Foundation Trust
  • Sheffield Teaching Hospitals NHS Foundation Trust
  • South Tees Hospitals NHS Foundation Trust
  • South Tyneside and Sunderland NHS Foundation Trust
  • South West Yorkshire Partnership NHS Foundation Trust
  • The Newcastle Upon Tyne Hospitals NHS Foundation Trust
  • The Rotherham NHS Foundation Trust
  • York And Scarborough Teaching Hospitals NHS Foundation Trust

North West

  • Blackpool Teaching Hospitals NHS Foundation Trust
  • Bolton NHS Foundation Trust
  • Cheshire and Wirral Partnership NHS Foundation Trust
  • East Cheshire NHS Trust
  • East Lancashire Hospitals NHS Trust
  • Lancashire & South Cumbria NHS Foundation Trust
  • Manchester University NHS Foundation Trust
  • Mersey Care NHS Foundation Trust
  • Mid Cheshire Hospitals NHS Foundation Trust
  • Northern Care Alliance NHS Foundation Trust
  • Stockport NHS Foundation Trust
  • Tameside and Glossop Integrated Care NHS Foundation Trust
  • University Hospitals of Morecambe Bay NHS Foundation Trust
  • Warrington and Halton Teaching Hospitals NHS Foundation Trust
  • West Lancashire Partnership (HCRG Care Group)
  • Wirral Community Health and Care NHS Foundation Trust
  • Wrightington, Wigan and Leigh NHS Foundation Trust

South East

  • Ashford and St Peter’s Hospitals NHS Foundation Trust
  • Buckinghamshire Healthcare NHS Trust
  • East Sussex Healthcare NHS Trust
  • First Community Health and Care CIC
  • Frimley Health NHS Foundation Trust
  • Isle Of Wight NHS Trust
  • Oxford University Hospitals NHS Foundation Trust
  • Royal Berkshire NHS Foundation Trust
  • Royal Surrey County Hospital NHS Foundation Trust
  • Solent NHS Trust
  • Southern Health NHS Foundation Trust
  • Sussex Community NHS Foundation Trust
  • West Kent Primary Care

South West

  • Dorset Healthcare University NHS Foundation Trust
  • Gloucestershire Health and Care NHS Foundation Trust
  • Livewell Southwest
  • Royal Cornwall Hospitals NHS Trust
  • Royal Devon University Healthcare NHS Foundation Trust
  • Sirona Care & Health
  • Somerset NHS Foundation Trust
  • Torbay and South Devon NHS Foundation Trust
  • Wiltshire Health & Care

In addition to the adult services, specialist paediatric post COVID hubs have been established across England to provide expert advice to local paediatric services supporting children and young people with long COVID.

As of 1st April 2023, the following organisations provide specialist paediatric post COVID services for children and young people:

  • Cambridge University Hospitals NHS Foundation Trust
  • University College London Hospitals NHS Foundation Trust
  • Birmingham Women’s and Children’s NHS Foundation Trust
  •  University Hospitals of Leicester NHS Trust
  • Hull University Teaching Hospitals NHS Trust
  • Sheffield Children’s NHS Foundation Trust
  • South Tees Hospitals NHS Foundation Trust
  • The Newcastle Upon Tyne Hospitals NHS Foundation Trust
  • Leeds Teaching Hospitals NHS Trust
  • Alder Hey Children’s NHS Foundation Trust
  • Manchester University NHS Foundation Trust
  • Oxford University Hospitals NHS Foundation Trust
  • Solent NHS Trust

Long COVID educational materials for clinicians

Long COVID is a new illness, which we are learning more about every day. The following is a list of resources that have been developed to help clinicians adapt to and learn about long COVID.