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 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:

  1. 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.
  2. 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.
  3. 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.
  4. National Institute for Health Research (NIHR) funded research on Long COVID to better understand the condition and refine appropriate treatment.
  5. An NHS Long COVID taskforce which includes patients with Long COVID, medical specialists and researchers.

Long COVID Plan 21/22

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.

You can read the plan in full here: Long COVID: the NHS plan for 2021/22

NICE guidelines

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: 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 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:

  1. East Suffolk and North Essex NHS Foundation Trust
  2. Essex Partnership University NHS Foundation Trust
  3. Hertfordshire Community NHS Trust
  4. Mid and South Essex NHS Foundation Trust
  5. Norfolk Community Health and Care NHS Trust
  6. Herts Valley (Hemel Hempstead Hospital)
  7. Cambridge University Hospital NHS Foundation Trust
  8. Norfolk Community Health and Care NHS Trust
  9. Barking Havering and Redbridge University Hospitals NHS Trust
  10. Chelsea and Westminster Hospital NHS Trust
  11. Homerton University Hospital NHS Foundation Trust
  12. Imperial College Healthcare NHS Trust
  13. London North West University Healthcare Trust
  14. St George’s University Hospitals Foundation Trust
  15. University College London Hospitals NHS Foundation Trust
  16. Croydon Health Services NHS Trust
  17. Epsom and St Helier University Hospitals NHS Trust
  18. Kingston Hospital
  19. North East London Foundation Trust
  20. King’s College Hospital NHS Foundation Trust
  21. Guys and St Thomas NHS Foundation Trust
  22. East London Foundation Trust
  23. Birmingham Community Healthcare NHS Foundation Trust
  24. Northamptonshire Healthcare NHS Foundation Trust
  25. Shropshire Community Health NHS Trust
  26. The Dudley Group NHS Foundation Trust
  27. The Royal Wolverhampton NHS Trust
  28. University Hospitals Coventry and Warwickshire NHS Trust
  29. University Hospitals Leicester NHS Trust
  30. Worcestershire Acute Hospitals NHS Trust
  31. Derbyshire Community Health Services NHS Foundation Trust
  32. Lincolnshire Community Health Services NHS Trust
  33. South Warwickshire NHS Foundation Trust
  34. George Eliot Hospital NHS Trust
  35. Midlands Partnership NHS Foundation Trust
  36. Nottinghamshire Healthcare Trust and Nottingham CityCare Partnership
  37. Sandwell and West Birmingham Hospitals NHS Trust
  38. Walsall Healthcare NHS Trust
  39. Barnsley Healthcare Federation CIC
  40. Bradford Teaching Hospital NHS Foundation Trust
  41. Calderdale and Huddersfield NHS Foundation Trust
  42. County Durham and Darlington NHS Foundation Trust
  43. Harrogate and District NHS Foundation Trust
  44. Humber Long COVID Triage and Assessment Service, hosted by City Healthcare Partnership, covering Hull University Teaching Hospital and North Lincolnshire and Goole
  45. Leeds Community Healthcare NHS Trust
  46. Mid Yorkshire Hospitals NHS Trust
  47. NHS Bassetlaw CCG
  48. North Cumbria Integrated Care NHS Foundation Trust
  49. North Tees and Hartlepool NHS Foundation Trust
  50. Northumbria Healthcare NHS Foundation Trust
  51. Sheffield Teaching Hospitals NHS Foundation Trust
  52. South Tees Hospital NHS Foundation Trust
  53. The Newcastle Upon Tyne Hospitals NHS Foundation Trust
  54. York Teaching Hospital NHS Foundation Trust
  55. Gateshead Health NHS Foundation Trust
  56. South Tyneside and Sunderland NHS Foundation Trust
  57. Mid Yorkshire Hospitals NHS Trust
  58. Kirklees Local Post COVID Assessment Clinic
  59. Doncaster Place
  60. Bolton NHS Foundation Trust
  61. Lancashire and South Cumbria NHS Foundation Trust
  62. Liverpool University Hospitals NHS Foundation Trust
  63. Manchester University NHS Foundation Trust
  64. Salford Royal NHS Foundation Trust
  65. Stockport NHS Foundation Trust
  66. Tameside and Glossop Integrated Care NHS Foundation Trust
  67. Wrightington, Wigan and Leigh NHS Foundation Trust
  68. Pennine Acute Hospitals NHS Trust
  69. Ashford and St Peter’s Hospital NHS Foundation Trust and Central Surrey Health
  70. Buckinghamshire Healthcare NHS Trust
  71. East Sussex Healthcare NHS Trust
  72. First Community Health and Care CIC
  73. Frimley Health NHS Foundation Trust
  74. Oxford University Hospitals NHS Foundation Trust
  75. Royal Berkshire NHS Foundation Trust
  76. Royal Surrey County Hospital NHS Foundation Trust
  77. Surry Downs Health and Care Partnership
  78. Sussex Community NHS Foundation Trust
  79. Isle of Wight NHS Trust
  80. Solent NHS Trust
  81. Southern Health NHS Foundation Trust
  82. Maidstone and Tunbridge Wells NHS Trust
  83. Gloucestershire Health and Care NHS Foundation Trust
  84. Sirona Health and Care
  85. Wiltshire Health and Care
  86. Dorset Healthcare University NHS Foundation Trust
  87. 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
  88. NHS Somerset CCG
  89. Royal Cornwall Hospitals NHS Trust

Long COVID Taskforce

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.