When Lucy returned to work after catching Covid in March 2020 she found the virus had taken a much heavier toll on her than she realised. A teacher for more than 20 years, she was used to writing long, detailed reports and firing off dozens of emails every day. But suddenly that had become a great struggle.
“I was off work for six weeks with Covid, but I was still unwell when I went back,” she told Socialist Worker. “I found that I simply could not remember how to do my job. Not only that, but I couldn’t even write in proper sentences. Teaching people to do this is what I do for a living, and yet I found myself struggling to put words together.”
When Lucy looks back at notes she wrote at the time she says they are “barely intelligible”—just a “tangle of unfinished sentences”. “Brain fog” or neurocognitive impairment is one of many symptoms of long Covid. Lucy is one of an estimated 1.7 million people in Britain that currently have it. The numbers continue to grow with each new strain of the virus.
Many of those people have only recently been infected with the coronavirus, but approaching half have had symptoms for more than a year. Some 74,000 people, including Lucy, are still suffering from some symptoms at least two years later.
The most common signs of long Covid are fatigue, a loss of energy so profound that many struggle to walk and do even basic household jobs. Shortness of breath and muscle aches fall not far behind. While only a minority find themselves struggling to think, the effects for them can be life changing.
Family doctor Kerry Smith explained why she is unable to return to her job. “The thing that’s really preventing me from going back to work is my cognitive issues or brain fog. Ummm [silence] Sorry, sorry, that’s it, you see, I lose my train of thought,” she told the Medical News Today website.
“That’s the problem. With my brain fog, I have problems concentrating, keeping up with conversations, multitasking. I lose my train of thought easily. And I have difficulties with my memory.”
Unsurprisingly, it’s those people who were in the frontline of the pandemic that have suffered the most. Those working in social care, teaching and healthcare are at particular risk. Long Covid is highest among people between the ages of 35 and 49 years old, among women, and people living in deprived areas.
That’s according to figures from the Office of National Statistics. Its survey relied on people self-reporting symptoms and illness—so the true figure could be higher than currently reported.
“The lack of information about long Covid, what it is, and how to treat it is really frustrating But it’s the lack of recognition that’s the worst—and that’s because the government has decided Covid is over.”
Dr Smith’s problems are familiar to south London health worker Maggie who returned to work quickly after an initial infection in March 2020. “Long Covid affected my writing and my speech. I could only manage one sentence at a time,” she explained to Socialist Worker.
“But there was no mention of anything like this in the NHS list of symptoms, so I didn’t go to my doctor and just tried to manage things myself. I was having to write myself lots of notes so as not to lose my train of thought. It was a very frightening time.
“My mum had dementia so I thought that this might be the onset of it for me. I thought this is now a permanent condition.”
After a month Maggie’s symptoms started to improve but in September 2021 she caught Covid again and was this time hit far harder. Since then she has suffered repeated viruses that have attacked her lungs.
“The lack of information about long Covid, what it is, and how to treat it is really frustrating,” she said. “But it’s the lack of recognition that’s the worst—and that’s because the government has decided Covid is over.”
The government’s mantra “we must live with the virus” affects all spheres of long Covid. From research into its complexities, possible treatments—and what happens to those who need help to continue working, or who cannot now work at all. For the Tories, acknowledging the scale of long Covid and its impacts would be an admission that ending all safety measures and most testing is disastrous.
“It’s the people who are suffering with long Covid that have pushed hardest for more research and better treatment,” said Lucy. “We are fighting a government that wants to deny its existence, or pretend that after the vaccination Covid is just a mild disease.”
Despite the shockingly high incidence of the disease only 5,000 people a month in England are being referred to specialist long Covid clinics, according to NHS figures. One third of those referred are having to wait at least 15 weeks for their first appointment.
Many patients then report having to wait between three and six months for follow up treatment. During that time they must try to fend for themselves, with many doing their own internet research and joining online support groups.
The benefits system is also failing those struggling with daily tasks. Latest figures show that as of January just 937 people with the condition had successfully claimed the Personal Independence Payment (PIP) benefit. This pays out a paltry £150 a week.
The benefits assessment system deliberately tries to catch people out by asking potential claimants whether they can perform a particular task. But the forms don’t assess what toll that task takes on the applicant, and if they could repeat it more than once on the same day.
Equality laws say that a disease must have a “substantial and long‑term impact” for it to qualify as a disability. Long term is usually taken to mean 12 months or more. That long time period has been a get out clause for the Department for Work and Pensions, and a great excuse for bullying bosses.
A recent survey by the TUC union grouping found that almost half of workers with long Covid had suffered discrimination or disadvantage in employment. Nearly a fifth were faced with disbelief and suspicion about their illness.
Around one in six respondents said the amount of sick leave they had taken had triggered an “absence management or ‘Human Resources’ process”. One in eleven had used all their sick leave, and one in 20 had been forced out of their job.
Many report that normal sickness policies were suspended during the height of the pandemic. But they say since the Tories ended all restrictions, Covid-related absence is once again being treated as though it were just a “normal” flu.
Long Covid will continue to affect hundreds of thousands of workers. It’s vital that our trade unions mount a serious campaign to win a better deal for those affected.
That should include a fight to change the law so that long Covid is specified as a disability. That would push employers to make “reasonable adjustments” to the working conditions of those with the disease.
But what will likely have more impact is if unions can force a change to company and organisation sickness policies. Many firms will allow staff that have been seriously ill to have a “phased return.” That means staggering how recovering staff come back to work, rather than immediately resuming full time hours.
Long Covid requires a much more flexible policy than the usual four weeks allowed. It should mean that staff can come into work but leave if they feel unwell, without fear of disciplinary action.
It should also include paid time off for physiotherapy and other treatments, extra breaks during work time, and physical changes to the workplace.
Employers must accept that many people caught Covid while at work—and because firms provided inadequate protective equipment. So they should pay industrial injuries benefits to workers with long Covid.
There must also be pressure on the government to increase and expand statutory sick pay. Everyone who has to take time off work should have enough money to live on.
Unions will only have a chance of implementing these types of measures if they can demonstrate strength on the shop floor. It is unlikely to be won by force of argument alone. That means the fight for better sickness policies should be combined with the fight for a decent standard of living.
Just as every worker in Britain needs a pay rise, so they need better protection if they fall ill.
Schools are known to be dangerous incubators of infections, including Covid. But it’s not just teachers that have been getting sick with long Covid.
While comparatively rare, a growing number of children are suffering from long Covid‑type symptoms. Many have been diagnosed with paediatric inflammatory multisystem syndrome, known as Pims.
The long Covid kids’ website has a page with pictures of young people holding signs detailing the various symptoms they suffer. The Tories’ refusal to acknowledge the true danger of long Covid means research into the causes and treatment of Pims continues only at a low level.
Since the start of the pandemic, some 200,000 people are not working or job-seeking because of long-term ill health. Long Covid and employers’ intransigence are likely factors in why that is.
Despite this, many bosses and their politician backers are still pushing for a “rapid return” to the office. Tory toad Jacob Rees-Mogg last week demanded that civil service workers be prevented from working at home.
In a letter to ministers, he wrote, “Now that we are learning to live with Covid and have lifted all legal restrictions in England, we must continue to accelerate the return of civil servants to office buildings to realise the benefits of face-to-face, collaborative working and the wider benefits for the economy.”
“Living with Covid” means accepting up to 100,000 deaths from the virus in Britain every year.
The latest data, published on 21 April, shows that in the previous seven days 1,636 people had died within 28 days of contracting the virus. The week before that, the figure was 1,984. On these trends, that would mean 80,000 to 100,000 deaths a year.
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