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Long Covid: can work lift the burden?

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Thousands of working people are struggling with ‘long Covid’; often life changing symptoms that continue long after initial infection. What are workplaces doing to help them?


“I am grateful for the loss of my voice. It is the only symptom that is real to anyone. I am grateful because it proves the inflammation which is ongoing in my body.”

Nina, 43, contracted Covid-19 as a nurse working in a busy hospital in early March when neither government nor the NHS were prepared for the pandemic. She wrote to describe her illness and how her workplace has handled her ongoing symptoms.

“It started, typically, with a new, persistent dry cough, fever and general malaise. With each passing day I felt like a weight was on my upper chest. My breathing became increasingly shallow, like a hippo sat just where your necklace lies.”

"Doormouse Diaries." Illustration: LongCovid.org

It got worse. With government advice (which is still in place) to recover at home for 10 days from the onset of symptoms and then return to work, her manager told her it must be a short-lived disease and she should be back on the wards. “My manager inferred I was lying when I told them my fever was persisting. In fact, I have only just stopped being feverish six months on.”

Fearful of losing her job, she decided to manufacture a recovery: “I worked out that the fever peaked and troughed. With some very selective timing, I managed to get two readings under 37.8°C and returned to work three weeks after falling ill.”

What happened next, she believes was down to going back to work before she was ready. One day in June she recalls: “I had a stressful workload, made more so by my brain fog. The mental stress seemed to exacerbate my symptoms in the way you might expect physical exertion to floor you if you had the ‘flu.”

The relapse led to an appalling range of symptoms she still suffers from: “My hair has fallen out in handfuls. My heart beats at over 120 beats per minute when I’m lying in bed. Sometimes my body appears to forget how to breathe. I wake from sleep suffocating, those excruciating seconds of willing my body to remember, lungs burning. I have had shingles. I cannot remember what my husband has just said to me. It will not go into my head. It literally just blows past me on the breeze.”

Blindspot

Hearing stories like Nina’s is important to challenge a massive blindspot about the long-term impacts of Covid-19. ‘Long Covid’ doesn’t appear in the statistics, which focus on deaths and cases.

"#aprèsJ20": Illustration showing the range of symptoms associated with Long Covid by Bruno Forêt

“A shocking lack of attention has been paid to this significant group of people of all ages, and many sufferers feel badly let down,” says the Long Covid SOS support group, which has nearly 25,000 members.

It says that “countless sufferers are forced to return to work, risking serious consequences for their recovery.” In the open letter to the prime minister, the group calls for government to take steps to ensure employers are fully aware of the situation, including making provision for long-term sick leave.

I wanted to look at the laws and protections that exist for these ‘long Covid’ sufferers in the workplace – either to be supported to be off sick to recover, or to get back to work in an empathetic and positive way – and what sufferers themselves say about what they need.

Long Covid: the facts

First, let’s look at what we know about long Covid. There are more than 60,000 sufferers of long Covid in the UK, according to King’s College research (dated August). Analysis from its Covid Symptom Study found that one in twenty people with Covid-19 are sick for eight weeks or more.

However, there is growing evidence to suggest that symptoms can persist for many months, and can fluctuate or worsen. Scientists conducting a study sponsored by University College London – themselves sufferers of long Covid – have surveyed 640 patients and found 89 per cent of respondents say symptoms fluctuate in intensity, and 70 per cent reported new symptoms appearing at different stages of their illness.

“Death is the stark statistic,” says Sir Mark Walport, the chief executive of UK Research and Innovation (UKRI), which is funding a major study into long Covid: “But it is also perfectly clear that a significant fraction, maybe 20 or 30 per cent of younger people, and those of all ages, have a very chronic illness and end up debilitated for… we don’t know how long afterwards because it’s such a new disease.”

Covid self portrait. Illustration: MM Plumm

Diagnosis is an issue, say the BMJ, especially for early victims of Covid-19 when testing wasn’t available. A study in the Annals of Internal Medicine found that the probability of testing negative when you’ve been infected by Covid-19 is 66 per cent by day 21.

Unreasonable adjustments

When it comes to this new disease, Richard Thomas, partner at Capital Law, explains that protections for recovery and return to work are under the Equality Act. This requires employers to make ‘reasonable adjustments’ for anyone suffering from a physical or mental impairment that is likely to last 12 months or more.

Long Covid could fall into this definition but we can’t say how long it will last – Covid-19 has still only been with us since March. “There’s little guidance out there regarding long Covid," he says. "Government hasn’t produced any for employers so it will be completely case by case. Some employers will be receptive and prepared to make adjustments and others may not."

Richard explains that anyone who isn’t given reasonable adjustments could in theory have a successful case at tribunal down the line. But he’s worried the economic downturn could encourage unscrupulous employers to behave badly: “My real concern about this, is if we go from where we are to three million people unemployed.

"With long Covid there are probably some employers out there who aren’t prepared to wait for an employee’s condition to improve and they will attempt to rely upon redundancy as a reason for ending employment knowing that there is always the option to re-recruit later on and probably no shortage of job applicants.”

"The long road to recovery". Illustration by Matthew Holder for our front cover of Safety Management

Getting a diagnosis for any long-term condition is normally the first step towards getting the appropriate support from your employer. But many long Covid sufferers aren’t able to get this. In sentences punctuated by long pauses due to her ongoing breathlessness, Linda, a care worker, tells me she has never been able to get a positive test.

Admitted late to hospital her test was negative and she hasn’t shown the antibodies for Covid-19 (false negatives are common). Her GP can’t put Covid-19 on her sick notes and consequently, HR won’t give her the appropriate support: “I found out recently that work has been recording my sickness as depression, anxiety and stress. I rang them and they said there wasn’t any other box to put my fatigue in.”

She is worried about a pay cut if she’s off sick for any longer. “If there’s anything that comes out of talking about this, I would like to get across how you can have relapsing, remitting symptoms. People haven’t believed me – lots of people in the support groups are having the same difficulties.”

What should employers do?

So, what should good employers be doing? NHS has paused its normal sickness absence provisions for staff suffering from Covid-19. A month absence from work will normally trigger capability dismissal, and stopping the formalities of this often inhuman process leaves the path open for two-way discussions in good faith about a person’s unique symptoms and support needs.

Shalina Crossley, partner in employment law at Lewis Silkin, says she sees employers are taking this route: “While we’re in this ambiguous phase, the sensible thing is for employers to engage in reasonable discussions with their employees to really understand the impact on their ability to undertake their work.

"That really will differ from person to person – the effects that they are suffering from. It would be wise for employers to consider what adjustments they need to make.”

Income protection policies for long-term sick workers could be an issue however. Just as insurers refused to pay up for the theatres which closed due to Covid-19, will they cover the cost of wages for long Covid sufferers’ off work? Shalina is not sure: “I think it will be interesting to see if insurers accept that long tail sufferers fall within their defined definition of disability within their insurance policies. That also might influence the way employers behave.”

Health and safety’s example of good practice

It’s important to hear how good employers are supporting long Covid sufferers. I speak to Dr Judith Grant, director of health and wellbeing at Mace, on 8 September, exactly six months since she got ill. “Ongoing issues are with my throat and extreme fatigue,” she says. “My voice comes and goes and I’ve got a swollen voice box and swollen tonsils.”

She also has terrible fatigue and tachycardia (when the heart beats much faster than normal): “It is crippling, it’s when you are washing up and you think, ‘I need to sit down now because I can’t stand up’. That’s the reality of the situation.”

Dr Judith Grant, director of health and wellbeing at Mace

But her employers at Mace have been great she says, working with her through occupational health support to gradually build up her hours. “Initially the first week I went back was two hours a day and I had to go to bed for an hour afterwards. At the moment I’m on five hours a day.” Her manager calls every week, and that kindness has been important. “It’s nice I feel cared about.”

Listening and not making assumptions about the illness is crucial, she says. “Don’t assume that just because I have fatigue I can’t do anything – it’s about just listening to the individual. I don’t like to miss out on things sometimes, so I have been adjusting to the hours I’m working so I attend certain meetings. Don’t assume someone isn’t going to come to them because that could end up in making them feel undervalued.”

She speaks honestly about experiencing paranoia when she returned after so long away: “I was thinking, everyone’s done a brilliant job without me. They don’t actually need me anymore and that’s my own anxiety. I think anyone who’s been off for a long time probably experiences that.” She says employers should reassure long Covid sufferers it’s not their fault they were off and offer whatever support the business is able to. “Those were my fears originally and were unfounded because Mace has been really good.”

Looking ahead, there are positive changes afoot. NICE has just announced it is fast tracking a guideline on effects of long Covid. It aims to support GPs, so that patients, irrespective of whether they received a positive test or not, can be cared for in the best possible way, based on the latest evidence.

Empowered GPs could translate to better support in the workplace and understanding about this terrible and persisting illness. Work is such a big piece of the jigsaw in anyone’s recovery from long-term illness. “I’m starting to feel a sense of achievement which makes me feel good and hopefully that will aid my recovery in the long term,” says Judith. “Being able to have that focus in the day, to see my colleagues again and feel part of a team…that’s been really nice.”

Support groups and links to advice:
www.longcovidsos.org 
Longcovid.org 
www.yourcovidrecovery.nhs.uk
Long Covid: 'how to define it and how to manage it: www.bmj.com/content/370/bmj.m3489 
The Employers guide to ME has information on duties to manage longterm conditions: shorturl.at/hBT79 

With thanks to artwork submitted by the long Covid community 

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