The Ignored Long COVID Crisis

The Ignored Long COVID Crisis

The Bank of England has warned of COVID-related labour shortages in Britain, but why aren’t we taking its long-term effects more seriously? Sasha Baker investigates

It was September 2020. Lisa had been unable to work due to Long COVID for the entire summer. She was attempting to return to her job as an executive assistant but it was making her symptoms worse. She could often feel her heart racing. One day she collapsed on the kitchen floor, struggling to breathe.

“I was there for about an hour before I could get the strength to even find my phone and make a call,” she said. She was taken to hospital in an ambulance but returned home that evening without a clinical explanation for the day’s events.

The 40-year-old from London had always been career-driven – but now she could think of little but her health. “I went to bed for about a six-week period thinking I was going to die every night,” she told Byline Times.

Even the smallest tasks were insurmountable. One morning, a flat tyre meant that Lisa had to walk her youngest son to school. It was a short walk – scarcely a kilometre – but the nine-year-old raced ahead as she struggled to keep up. “He kept turning round and saying, ‘mummy, I’m so sorry you have to walk’,” she recalled.

Quitting her job seemed to be the only option. A few months later, feeling slightly better, Lisa took a civil service role below her skill level. It meant a £10,000 pay cut but she found the job easy and it would ensure financial security if she needed to take time off. As it turned out, she was signed off for most of the following five months.

There are an estimated 1.8 million people in the UK living with Long COVID and the number is rising rapidly. The Bank of England warned last week that the condition is contributing to labour shortages, with an estimated 320,000 chronically ill people dropping out of the workforce before retirement age.

Some – known as ‘long-haulers’ – have been unwell since the early days of the Coronavirus pandemic with little to no respite from the debilitating exhaustion, brain fog, chronic pain and trouble breathing associated with the condition. Many are unable to work.

Throughout the crisis, the advice to people with COVID-19 has been to return to normal activities as soon as they are feeling better – but many Long COVID sufferers blame returning to work too quickly for the severity of their illness.

Dr Asad Khan, 46, is a respiratory consultant for the NHS in Manchester who went back to work for three days after a bout of acute COVID-19, which is when his Long COVID symptoms started.

Dr Khan has been unable to practice for the past 18 months because of severe illness. He used to love cycling and swimming but now says that he “can barely go to the corner shop”.

Dr Deepti Gurdasani, an epidemiologist and senior lecturer at Queen Mary, University of London, has been raising the alarm about Long COVID throughout the pandemic. According to her research, and the published research of other groups, “consistently what you find is that being able to rest when you have persistent [COVID] symptoms correlates with recovery”. She has also noted that the illness is occupational, with those in health, social care and teaching most likely to be unwell.

Long COVID patients also struggle to access disability benefits.

Dr Khan has applied for personal independence payments (PIP), a non-means-tested benefit to help disabled people with the extra costs of managing their condition, but was initially denied. He has asked the Department for Work and Pensions (DWP) to reconsider his case, but the process involves writing a “long, complicated letter, which with fatigue and cognitive issues is not easy.” While he is waiting to hear, he is relying on money from his parents.

The DWP has recorded only 1,600 PIP decisions relating to people with Long COVID, with half of that number being awarded payments. Figures for decisions before March 2021 are not recorded as COVID-related and some without a formal diagnosis may also not be counted.

The Government also does not collect figures on the number of people with Long COVID claiming Universal Credit.

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Herd Immunity

Workplaces vary in how they treat people with Long COVID.

NHS workers are meant to be protected because COVID-related sickness absences are not subject to usual policies, but these are not applied consistently. 

Emma, 44, is a clinical coder for the NHS in Bristol, but has not been able to work since the start of the pandemic. “I haven’t been hit financially but I did really have to fight to get my illness recognised as COVID-related,” she said.

COVID tests were not yet in widespread circulation when she fell ill so there was no way to confirm her diagnosis. Her employer moved to dismiss her because of her illness.

“When they were talking about sacking me I’d only been off for like three months,” said Emma. “I’d had no referrals. I had no idea what was going on.”

She has been allowed to continue on full pay, though she worries that the NHS will one day stop paying COVID-19 long-haulers.

For those in the private sector, there are no such protections.

Sy, 44, is a former call-centre worker and DJ from Leeds who has experienced debilitating Long COVID symptoms for two years. He has been claiming Universal Credit for most of that time, after no longer being to claim statutory sick pay.

“My workplace actually tried to take me down the road to a disciplinary for not being at work” he said. He appealed the decision and won in May 2021 but when his workplace tried again that August, he “didn’t have anything left to give” and had to accept the disciplinary procedures.

For some, claiming benefits is simply not an option.

Wil, 23, is a Dutch student in Bristol who has been struggling to juggle her degree with the 10 hours of work she is legally allowed to undertake each week, while managing her Long COVID symptoms. “My student loan just covers my rent and my tuition so if I didn’t work I wouldn’t be able to eat,” she said.

For most of this year, Wil worked 10 hours a week in a pizzeria, which used up practically all of her energy. “My attendance was below 30% in the first semester because I just couldn’t bring myself to walk 15 minutes to campus,” she said.

She has learned to manage her energy well enough to complete her degree, spending an hour or two in the morning and evening writing her dissertation with a long nap in the middle of the day. Now she is about to graduate, Wil is ineligible for benefits, having not contributed enough national insurance in her three years as a student in the UK.

She is moving in with her partner, which will help with rent, but she is struggling to find full-time work that won’t worsen her illness. Anything physically demanding is out of the question but there are other considerations.

“I also can’t really do an office job because screens and reading aggravate my symptoms,” said Wil, whose Long COVID is currently manifesting as a months-long migraine. She needs to find ways to work, but without significant accommodations from future employers that will be a challenge.

The extent of the impact of Long COVID on the economy is still to be seen, but the country has not adapted to meet the needs of those suffering from the illness or taken steps to prevent hundreds of thousands more from becoming disabled.

According to Dr Gurdasani, the Government’s approach to the pandemic has made the spread of Long COVID inevitable.

“There’s never been a focus on reducing transmission, which is what’s needed to prevent Long COVID, and I suspect that’s very political,” she said. “I think the reasons for ignoring Long COVID and minimising it have been because doing so normalises the Government’s strategy.”