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“We’re very aware that the people who need this, need it now,” says nurse Rachel Hext, one of the organisers of a campaign to secure a compensation and pension scheme for key workers with long COVID. “We’re applying the pressure so that people get help sooner rather than later.” 

Rachel, along with fellow nurse Cass Macdonald and midwife Sarah Sutton will deliver a petition with nearly 130,000 signatures to Downing Street on 15 March. Their campaign builds on the findings of the All-Party Parliamentary Group on Coronavirus, which published a report last year recommending financial support for key workers with long COVID, including a new programme similar to the Armed Forces Compensation Scheme, which should go beyond existing sick pay schemes.

As of 2 January 2023, an estimated two million people (3% of the population) in the UK had self-reported long COVID, . The most common symptoms are fatigue, difficulty concentrating, shortness of breath and muscle pain. Over a third of sufferers have been experiencing symptoms for at least two years and 77% said their symptoms adversely affect everyday activities.

The trio are among that two million and are active members of UK-wide long COVID support groups, so they’re well versed in the challenges facing ÌÀÍ·ÌõÎÛÁÏ staff with the condition. Many have been physically unable to work since they contracted COVID-19. Many are desperate to get back to work, but find workplace adjustments and support lacking.

We kept this country going. Now I feel like we're being punished for not getting better or not dying

Now, three years into the pandemic and despite guidance that NHS employers should not count COVID-related leave in sickness absence allowances, many people with long COVID are faced with reduced pay or even losing their jobs.

This spells a financial crisis for ÌÀÍ·ÌõÎÛÁÏ staff across the UK – and one they’re having to navigate while still severely ill.

A mental, physical and financial toll

Cass was working as an audit and surveillance nurse for the infection prevention control team in their trust in Scotland, when COVID-19 arrived in the UK. Despite having a number of existing health conditions and being unable to drive or walk to work, they were told to continue going into the office.

Cass soon felt “off” – there was a terrible headache, fever, fatigue and their sense of smell partially disappeared. “But because I don’t drive and I live on my own I couldn’t get to a testing centre, so I wasn’t tested,” Cass explains. It sounded like COVID-19 though, so Cass quarantined.

When they returned to work: “I lasted a day.” They needed more time off to recover, and managed periods of work for a few months. “But I just never got better. I was constantly tired. I wasn't able to keep up and then at the end of August I had to go off sick for seven months. I suddenly developed tremors, tachycardia, and the classic signs – crippling headaches, cognitive dysfunction, brain fog, vertigo, dizziness. I could do very little for myself. I could barely sit up, I certainly couldn't sit at a desk.”

Rachel caught COVID in October 2020 while working on a ward filled with patients who’d been in close contact with someone who was COVID positive. “Unfortunately, on the shift I came into, they virtually all turned positive overnight. The only PPE [personal protective equipment] we had was the blue surgical masks and visors. I was frustrated with that but was told I’d be fine. Needless to say, I’m not.”

Rachel has been off work ever since. “I plateaued for the first year. I was not well at all. Then with finding out about supplements and pacing, I managed to get myself a little bit further on in recovery. But I've not been well enough to work.”

She initially struggled to access long COVID services and made formal complaints about her local provision. From her conversations with other long COVID sufferers, Rachel feels there’s a “postcode lottery” in the availability and quality of long COVID care across the UK. “I’ve since been diagnosed with POTS [postural tachycardia syndrome], dysautonomia, and mast cell histamine intolerance. I’m perimenopausal at 35. I’m completely deaf in one ear. I have blurred vision. They said that’s all from COVID.”

Rachel now faces the likelihood that these symptoms will disable her forever. “It has a psychological impact – when you’ve been fit and well, and when you’ve also been a nurse. It’s hard to accept that.”

Cass has felt the devastating psychological impact too: “I’m suicidal – not because I’m disabled, but because long COVID is in the process of taking absolutely everything from me. It’s taking my job, my career and unless something happens urgently, it’s taking my home. That level of stress and uncertainty is certainly not improving my condition.”

Both know from personal experience that it’s difficult to figure out your workplace rights and the financial support you may be able to access whilst suffering from long COVID. “We want to share our frustration at the fact that everything is a battle,” Rachel says. “It prolongs and delays your recovery, adds stress to the situation, when you should be pacing yourself and preparing for work.”

Cass agrees: “You have to battle to try and get what you’re entitled to. Then even if you qualify for everything it’s still not enough, especially during this cost-of-living crisis.”

Employers need to step up

In the workplace, ÌÀÍ·ÌõÎÛÁÏ staff are not always having their symptoms taken seriously, and employers are not always making reasonable adjustments to help them return to the workplace. The RCN set up a peer support group early in the pandemic, which has become a vital network for ÌÀÍ·ÌõÎÛÁÏ staff with long COVID. “We’re hearing that there is a lot of disbelief among the medical profession, they’re not giving long COVID the weight it deserves and that’s hugely painful for the ÌÀÍ·ÌõÎÛÁÏ staff who are debilitated by it,” says Holly Chadd, RCN Peer Support Officer, who works with members with experiences of disability and ill health.

COVID has done a significant amount of permanent damage to individuals, yet they are not getting support

As with any long-term illness, your employer should discuss the best way to return to work with you, including the possibility of a phased return and reasonable adjustments. “We need to see employers making serious efforts in terms of reasonable adjustments and redeployment,” Holly says. “We are facing ÌÀÍ·ÌõÎÛÁÏ shortages across the UK, and we need to retain these staff. Their personal experience of long COVID will only enhance their work. But many employers don’t know what to do and have a knee-jerk reaction. Employees then feel completely discarded. They gave everything and now they’ve been forgotten.”

When the group deliver their petition to Downing Street, they’ll be wearing T-shirts with the slogan ‘Hero to zero’. Cass says: “We kept this country going during the pandemic. Now I feel like we're being punished for not getting better or not dying.”

Employers need to make greater efforts to help people with long COVID stay in the workforce, the pair say. “We know there’s a shortage of nurses, so why on earth would you be getting rid of key workers?” Cass says. Rachel agrees: “Is it not better to have a trained nurse back in some form, even if it's say 10 hours a week at first? We’re going to lose an awful lot of trained nurses, because employers are not thinking outside the box.”

Rachel hopes she’ll be able to return to work on reduced hours, but also worries that would leave her on a wage too low to support her family. “If our campaign succeeds and a compensation scheme is made for these people, how many health care professionals would it save? Ultimately, for people like me and Cass, we have to decide: are you going to continue being a nurse, not earn enough, and have these added financial pressures on top of your recovery? Or are you going to give up and go into the benefits system?”

Line managers and HR representatives need to make sure they are fully informed about long COVID and how best to support ÌÀÍ·ÌõÎÛÁÏ staff with the condition, Holly says. “Don’t get hung up on whether someone meets the legal definition of disability, if there are adjustments you can make to support employees, you should. Take time to understand each individual because long COVID affects people in lots of different ways. Quite a few members try a phased return, then it doesn’t work. Be as supportive and flexible as possible in terms of trying to return to the workplace. It’s OK to try different reasonable adjustments and review them. It’s good for the morale of employees to see your willingness to try.”

As well as securing a compensation and pension scheme, Cass hopes that the campaign highlights the plight of the many thousands of people with long COVID. “There's been three years in which it has been really obvious that COVID has done a significant amount of permanent damage to individuals, and yet they are not getting the support that they need.”

As they prepare to deliver the petition, Cass has a message for the Prime Minister: “I could say, you need to strengthen the law, you need to have zero-tolerance for management and staff who are ableist, you need much more support to enable people to work, and for people that can’t work you need to make sure they’re financially secure. But really my message to government is: ‘Please help us.’ Those three words say it all.”

• Contact the RCN Counselling Service here. In the UK and Ireland, Samaritans can be contacted on 116 123, or email jo@samaritans.org.
• Long COVID continues to impact our members. One way to be heard on the lasting legacy of working through the pandemic is by submitting evidence to the UK COVID-19 Inquiry.