Photo: Coronavirus (COVID-19) Sheffield, UK from Tim Dennell flickr photo stream

The All Party Parliamentary Group (APPG) report into Long COVID was released about a month ago. One important detail is that of the 14 members of the Group, from many different parties, and from both the House of Commons and Lords, just one is a Tory: ex-NHS medic Dr Dan Poulter. Hardly a surprise that those who presided over the pandemic shitshow don’t want to unpick its legacy.

Long COVID is extraordinarily prevalent. Close to 1.7 million people – children and adults – according to ONS data have Long COVID. I got COVID in April 2020, and I’ve not been well since. I read the APPG report as a sufferer and an academic who researches work and employment. Here’s what I picked out.

Long COVID in the ‘working age population’

Headlines and soundbites in the Long COVID report draw attention to the implications of Long COVID for the working age population – 1.8 million days of absence in the NHS, for example. Similarly, Long COVID brings a whole host of problems for workers: people have had to leave their jobs and wrestle with the insensitive and punitive benefits system. Or they have reduced their hours, employer permitting; or retired early, if they can. In the early debates about lockdown, the discussion polarised around health versus economy. How’s that working out for you now, Boris? Still, it’s an economic opportunity for the wellness industry offering hope-cures.

It’s important, though, to think not just about working days lost but about the shift in the organisation of work that Long COVID begets – in households, as Long COVID sufferers need care, and can’t provide care for others, and outside, as colleagues have to stand in for those off on long term sick leave. Some of those 1.5 million sufferers are those who have already retired, and who now have a slower, sadder, and more painful old age

Long COVID, an occupational disease

The APPG report rightly considers on those for whom COVID and Long COVID are occupational diseases: workers in health and social care (HSC) who got COVID at work. There is a clear case for labelling (long) COVID an occupational disease, as has been done elsewhere, to enable sufferers to get compensation. If this does happen, then it also has to include care workers outside the NHS. The report cites the experience of doctors getting COVID on the job, but what of the care home workers, the nurses, the domiciliary care workers, the occupational therapists and social workers?

The class, race and gender of HSC workers matter. It’s well known that the health and social care sectors employ proportionally more workers from minority ethnic groups, proportionally more women. Skills for care data on HSC workers tells us 82% are female, 21% are BME (compared to 14% of population), and 16% do not have British nationality (compared to 8% of population). We might also note that the average age is 44, and 27% are over 55. These workers were and are vulnerable to getting COVID through work, and hence are more vulnerable to Long COVID. In this sector, average days of sickness per worker was 5.1 in 2019/20, and this went up to 9.5 in 2020/21. Some of that is because of COVID, some is burnout, hardly surprising when you understand that 24% in the sector are on zero hours contracts – 55% of those zero hours contracts being care workers. Precarious work is stressful and risky.

Getting COVID is gendered, classed and racialised. There are racial inequalities in higher rates of positive tests and of COVID mortality: I haven’t been able to find digested data on ethnicity and rates of Long COVID. There were racial inequalities in who was redeployed into frontline covid care, and in access to PPE, which contributes to the risks of Long COVID. ONS data from March of this year tells us that Long COVID is more prevalent for those aged 35-49, women, people living in more deprived areas, those working in education, social care or healthcare, and those with an existing health conditions. Let’s hope that Long COVID doesn’t carry on being treated similarly to other women’s health conditions: as a psychological disturbance not bodily dysfunction.

As part of living with Long COVID, I find it takes me a long time to make sense of things these days. But part of the report that jumped out was the call for improving the Long COVID care pathway.

Treatment pathways

A nurse told me that ‘it’s a good thing so many medics have Long COVID, we will argue for better care for all’. I hope she’s right. A key finding of the Long COVID report is that the current clinics are inadequate: poorly funded and still too focused on hospitalised patients. Tell me about it. In November 2020, month 7 of illness for me, there was a media hoo-ha announcing new Long COVID clinics. Friends and family were happy to think I’d be assessed and get some solid advice on managing. But, as is so often the case with this government’s announcements, the smoke had no fire.

It was another year before I got a phone call from the post COVID Assessment Clinic, and this was after a series of missed and misread referrals. That was 6 months ago, and I’ve heard from just 1 of the 4 clinics I was promised. That clinic turned out to be a community class in pulmonary rehab. Karen the physio who runs it, didn’t understand why I’d been sent to them rather than seen by anyone who could help distinguish how much of my breathlessness was because of secondary symptoms (worsened asthma due to COVID), and how much was primary symptoms directly related to COVID. Month 23, I got a breezy voicemail from the anonymous nurse at the post COVID clinic saying ‘just checking you’ve had all your treatments, I’ll ring back in two days’. That was three weeks ago, and no, I’ve not heard.

Long COVID is a new disease, as I have been told by all kinds of medical professionals every time I have tried to get help. I know it is. That’s part of why it is frightening. For me it is a new indeterminacy. I don’t know what kind of improvement I might get, although I am constantly on the lookout for signs. It’s a new indeterminacy for us all, and we can’t pretend we can return to normal.

About the author: Lynne Pettinger works part time in the Sociology Department at the University of Warwick. She is the author of What’s wrong with work? and Work, Consumption and Capitalism.