Workers' experience of Long Covid

The Covid-19 pandemic continues to impact heavily on all our lives and one of the long-lasting, but unanticipated, impacts is the emergence of Long Covid. Whilst many people infected by Covid-19 may fully recover, significant numbers will experience varied, ongoing and debilitating symptoms that last weeks, months or years following the initial infection. This prolonged condition has been given the umbrella term Long Covid or sometimes referred to as post-Covid-19 syndrome or post-acute sequelae of Covid-19. The National Health Service (NHS) advises contacting a general practitioner (GP) if someone is worried about symptoms four weeks or more after a confirmed or suspected Covid-19 infection. 40 The National Institute for Health and Care Excellence guidelines includes acute Covid-19 (up to four weeks), ongoing symptomatic Covid-19 (symptoms from four to 12 weeks) and post-Covid-19 syndrome (symptoms past 12 weeks).41

Throughout this report we refer to Long Covid as this is the term created by people experiencing the symptoms.

Long Covid is an energy limiting condition and an umbrella terms that refers to multiple different symptoms; a study led by a patient led research collaborative identified more than 200 possible symptoms.42  However, some of the more common symptoms are energy exhaustion (fatigue) 43 , shortness of breath or difficulty breathing, cognitive dysfunction and muscle pain and aches44 and symptoms are likely to fluctuate.

There is evidence that demonstrates the number of people impacted by Long Covid is increasing. The ONS reported that as of 1 August 202145 970,000 people living in private households in the UK (1.5 per cent of the population) were experiencing self-reported Long Covid. The most recent data from 2 January 2023 highlighted that this had increased to 2 million people (3 per cent of the population).46

Anyone can be affected by Long Covid but there is a higher prevalence of self-reported Long Covid in certain groups. The latest ONS data shows that they are people aged 35–69 years old, women, people living in deprived areas, those working in social care, people aged 16 years or over who were not working and not looking for work and disabled people.47 Previous data sets have also included people in health and education.

However, an ongoing issue when analysing the disproportionate impact of Covid-19, is a lack of public understanding on what constitutes Long Covid, the difficulty in gaining a diagnosis, the range of symptoms people can experience and that some people would not have had a positive Covid-19 test due to the difficulties that many experienced in accessing tests at the start of the pandemic and the ending of free testing in 2022. This is likely to impact people's ability to report it accurately.

Over the last three years, we have seen the huge impact that Long Covid is having on people, including their experiences of work. The TUC and Long Covid Support published results from a survey June 202148 and this report is an effort to build on that evidence with the aim of ensuring that people are properly supported in the workplace.

This report is broken up into the following sections:

• Section 1: Background - relevant legislation and experiences of disabled people
• Section 2: What we know so far - Covid-19 and Long Covid and work
• Section 3: Methodology
• Section 4: Findings - Long Covid symptoms
• Section 5: Findings - Experiences of work
• Section 6: Findings - Financial support
• Section 7: Findings - Experiences of unemployed people

• 40 https://www.nhs.uk/conditions/coronavirus-covid-19/long-term-effects-of-coronavirus-long-covid/#:~:text=What%20is%20long%20COVID%3F,or%20post%20COVID%2D19%20syndrome 
• 41 https://www.nice.org.uk/guidance/ng188
• 42 https://patientresearchcovid19.com/publication/  
• 43 Fatigue described by people with Long Covid is often met with scepticism and a response of ‘we’re all tired’. One of the authors of this report described her fatigue as like operating a device on a faulty battery - at some point non-essential functions fail for it to just keep running and ultimately it shuts down and everything powers down. It then takes forever for the battery to re-charge, doesn't hold the charge, and quickly discharges again. “I feel like I’m on battery saver mode and certain functions just don’t work and can’t recover.” ‘The Spoon Theory’, coined by Christine Miserandino in 2003 is another analogy also used by disabled people to describe energy limiting fatigue.
• 44 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1december2022
• 45 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2september2021  
• 46 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2february2023 
• 47 Ibid
• 48 https://www.tuc.org.uk/research-analysis/reports/workers-experiences-long-covid