Workers' experience of Long Covid
Reasonable adjustments at work
The survey asked questions about the support that individuals had asked for at work and what they had received from their employer. Getting reasonable adjustments from employers is not only important to inclusive working and preventing discrimination and negative treatment, but to ensure that work is not worsening someone's Long Covid symptoms.
Sharing symptoms
The majority (59 per cent) of respondents said they had made their employer aware of all their symptoms and just under a quarter (23 per cent) made their employer aware of some of the symptoms. However, one in eight (12 per cent) said they did not inform their employer of their Long Covid symptoms at all.
Almost half of the workers (48 per cent) who did not communicate their symptoms to their employer cite a lack of diagnosis or medical evidence — without these they thought they should not or could not raise the issue. This is concerning because, despite numerous symptoms identified by the World Health Organisation, Long Covid remains a diagnosis of exclusion and diagnosis frequently depends on numerous separate tests for other conditions which are difficult to get referred to and take a long time to obtain due to waiting lists stretching to months and sometimes beyond a year. In addition, a diagnosis is not needed to receive support from your employer but a combination of misinformation, stigma and common acceptance of the medical model of disability can leave workers feeling they need one in order to ‘prove’ their impairment.
Further, one in three (36 per cent) respondents said they didn’t think their employer would do anything or said they were worried that their symptoms would be viewed negatively by their employer (31 per cent). More than one in five (21 per cent) were worried about the potential harm that disclosing their symptoms would do to their career prospects and 16 per cent didn’t think their employer would believe them. Only one in five (20 per cent) said they hadn’t shared their symptoms because they didn’t need their employer to do anything.
Requesting adjustments
Of the respondents that had told their employer about their Long Covid symptoms, two in three (65 per cent) had requested changes that would help them manage their job or return to work. But worryingly, one third (33 per cent) had not.
Again, we see a pattern of fear of stigma and disbelief. Of the respondents that had not asked, only one in six (16 per cent) said it was because they did not need any changes. One in three (32 per cent) said they were worried that they would be viewed negatively by their employer. The other main factors were, again, lack of medical diagnosis (28 per cent) and thinking the changes would not be approved (22 per cent). Almost one in five worried that asking for changes would harm their career prospects (20 per cent). More than one in ten (15 per cent) didn’t know that changes were an option and 13 per cent were worried about the reaction of their colleagues.
Reasonable adjustments for returning to work
We asked respondents what adjustments they had asked for to support their return to work. Overall, one third (35 per cent) of respondents who asked for changes said their employer had made all the changes requested but worryingly, this is down from our report in 2021 where 44 per cent of respondents said all changes had been made.
And, concerningly four in ten (40 per cent) said only some of the changes were put in place (this was 31 per cent in 2021) and eight per cent said none of the changes (this is the same percentage as the 2021 survey) were made meaning that almost half of respondents were not given all or any of the changes they need to return to work. One in sixteen (six per cent) were still waiting for a response.
We asked respondents which changes they asked for and which their employers had put in place.
In two categories, phased return to work and support from occupational health, more respondents had a change implemented than asked for it. Just over half (54 per cent) of respondents asked for phased return to work and 65 per cent received a phased return to work. Similarly, 47 per cent of respondents asked for occupational health support and 55 per cent received it. This pattern was the same in our 2021 results.
In the case of phased return, almost 40 per cent of respondents who had a phased return to work reported that this was between four weeks and four months. The fact that more people had phased return to work implemented than asked for it indicates a tendency for employers to see phased return as the main solution, expecting the person with Long Covid to have a linear recovery and return to their healthy self at the end of it. The reality is different, as Long Covid recovery is not linear, and it is a fluctuating condition.80 Of the respondents who had taken time off, 42 per cent had been off for more than one period of time, which includes 10 per cent of respondents who reported making more than three attempts at returning to work – and being off again as their symptoms relapse. Only a third (32 per cent) were able to return to work on their first attempt.
Reassuringly, a quarter (26 per cent) of respondents said their current employer was “reasonably supportive” and allowed them time of work before returning. A further 23 per cent said their employer let them have as much time off work as they needed. However, 16 per cent said they had been pressured to return to work before they were ready.
Comments from respondents also expressed frustration at employers not understanding that symptoms would continue and fluctuate.
“Now I'm back, expectations are that I will cope. Impatience that I'm not getting better. Guilting from HoD (Head of Department) that I'm 'on the radar' as being paid full time and not lecturing. That I shouldn't go for promotion in case the university finds out. All very stressful.” Woman, 36–45, education
The percentage of respondents asking for a temporary change or reduction in hours and time off to attend a Long Covid clinic was the same as those that received it.
In all remaining categories fewer workers received a requested change than asked for it. Noticeably, four of the five changes with the biggest discrepancy between asked for and put in place are forms of flexibility - flexibility to support fluctuations in my symptoms, longer or more frequent breaks, permanent home working and other changes to my hours (see Table I for the figures). Additionally, fewer than half the number of people who asked for physical changes to their workplace to help them return to work (e.g., improved ventilation, lighting, seating, workstations) received those adjustments.
In our 2021 survey, flexibility to support fluctuations and longer/more frequent breaks were the most frequently asked for changes but also had the biggest discrepancy between being asked for and being put in place. Flexibility in different forms, but especially to manage fluctuating symptoms, that can be made beyond a phased return to work is a key adjustment for workers with Long Covid to be able to return to work but are more likely to be turned down by employers.
- 80 As covered under Guidance to the Equality Act.
Reasonable adjustments to help manage work
We also asked respondents what changes they asked for to help them manage their job. Again, half of respondents were not given all or any of the changes they need to manage their job – 11 per cent had their changes rejected and 39 per cent only had some of their changes made. Just over one third (37 per cent) had all of the changes they asked for made to help them manage their job. One in sixteen (6 per cent) were still waiting for a response at the time of the survey.
We see similar patterns when looking at the changes to manage their jobs. More respondents had support from occupational health put in place than asked for it. And similarly, the most frequently asked for changes were amended duties, temporary changes or reduction to hours and flexibility to support fluctuating symptoms. However, again three of the five changes with the biggest discrepancy between asked for and put in place are forms of flexibility - flexibility to support fluctuations in my symptoms, longer or more frequent breaks and permanent home working (see Table II).
Employers' reluctance to offer forms of flexibility may reflect a combination of the stigma that we know exists towards flexible working, a lack of understanding at the fluctuating nature of Long Covid and a post-exertional malaise and disbelief from employers on what is needed by people experiencing symptoms.
Additionally, 20 per cent of respondents asked for additional equipment to help them do their job and only 11 per cent received this and only around half the number of requests to make physical changes to workplaces to enable the person with Long Covid to do their job were granted – including improvements to ventilation for workers with Long Covid who wanted to avoid repeated infections.81 This came across in the comments as well.
“FFP3 masks — asked for — been refused.” Man 26–35, health and social care.
“Asked for HEPA filtration, proper air ventilation and contact tracing within the office but all were refused. Was told air filters are too expensive by a company worth over £200million.” Man, 26–35, PR, advertising and market research.
“Asked for Health and Covid 19 risk assessment and ventilation in the office - no response. Also asked for ventilation and mitigation measures during meetings and all staff meetings - no response.” Woman, 26–35, Charity/Third Sector.
When comparing to 2021, the percentages of people asking for different changes has stayed largely consistent, other than there has been a slight jump in people asking for permanent change or reduction to hours from 15 per cent in 2021 to 22 per cent in 2022 and people asking for redeployment from 10 per cent in 2021 to 18 per cent in 2022. Some changes are not directly comparable.
Comments from respondents showed the serious impact a lack of, or poorly managed, adjustments had on their symptoms, demonstrating that bad employer practice can worsen people’s health and lead to relapse.
“Even though officially changes have been made, ongoing management and colleague pressures pushed me beyond my limits and I ended up relapsing fully, to the point that I’ve been off work for the past ten months.” Woman, 36–45, health and social care.
“I returned to work and built up a phased return to 5 hours a day over 5 months (all working from home). I was then overloaded with work so now been off sick for over a month due to a flare up in symptoms.” Woman, 26–35, legal.
“OH recommended permanent WFH. Senior manager disagreed, even when WFH national guidance in place. Stress caused from their trying to force issue, with other manager demanding.... WFH & office meant I relapsed with LC and have not been able to go back to work.” Non-binary, 46–55, health and social care
Barriers to reasonable adjustments
For the respondents who said they had not asked for certain changes to either return to work or manage their job we asked why they had not done so. The survey paints a complex picture of factors that preclude workers from asking for changes, including workers being uninformed about their rights.
More than 40 per cent of respondents who did not request specific changes, felt that those changes were not needed.
However, even if the worker would have benefited from changes, a quarter of respondents (25 per cent) did not request them because they did not know these changes were an option.
Other reasons cited for not requesting changes reflect a fear of request being rejected and damaging workplace relationships and career prospects.
- One third (32 per cent) said they did not think the request for changes would be approved.
- Three in ten (29 per cent) of respondents said they were worried that it would be negatively viewed by their employer.
- Two in ten (20 per cent) said they were worried about potential harm to future prospects.
- Just under two in ten (18 per cent) were worried about the reaction of their colleagues
Other reasons that respondents provided for not securing changes included waiting for approval, Occupational Health advice or equipment to be delivered or a failure by the employer to provide adequate staff coverage to accommodate the adjustment.
“There is no-one else who can take over my work duties if I don’t do them. So even though I had a reduction in work hours, the jobs I had to do were the same.” Woman, 36–45, Charity/Third Sector.
Treatment at work
To understand how Long Covid impacts experiences at work we asked respondents if they had experienced different types of unfair treatment. Respondents were able to select all the types of treatment they had experienced.
Our results show that the fear of negative consequences that precludes workers from speaking to their employer is well justified.
Responses demonstrate the enormous impact that having Long Covid can have on people’s experiences of work ranging from the impact on career progression to loss of hours and ultimately jobs.
Performance and progression
Almost three in 10 (28 per cent) respondents told us they were concerned Long Covid has affected their chances of a promotion in the future and 15 per cent told us their colleagues or manager have questioned their commitment to their job.
“Told not to go for promotion in case I draw attention to myself and my illness (even though we agree I meet the criteria for promotion).” Woman, 46–55, education.
Additionally, one in 20 (five per cent) said they had been denied training opportunities.
Disbelief
Almost a quarter of respondents (23 per cent) said their employer has questioned whether they have Long Covid and/or the impact of their symptoms.
“My boss questions my symptoms - said it seemed like a lot of symptoms for one person, as if I was lying.” Woman, 46–55, education.
“[My manager] does not fully understand the impact of LC and therefore has made comments which suggest she feels it is equivalent to her own tiredness etc and that I should therefore be able to ‘push through’.” Woman, 36–45, education.
This is similar to the disbelief that many with people energy-limiting impairments face in the workplace. More than 80 per cent of respondents to a survey done by Chronic Illness Inclusion felt that people think “everyone gets tired” and experienced this as disbelief of their experience82 .
Sick leave and management action
Sick leave was raised by a significant number of respondents with just over a quarter (27 per cent) of respondents stating that the amount of sick leave they had taken had triggered absence management or HR processes and over one in ten (13 per cent) told us they had used all of their sick leave entitlement and had been told there would be negative consequences if they took more.
To address the issues with sick leave, a common adjustment for disabled people is disability leave, which is a period of time off work which has been approved by an employer for a reason related to an employee’s impairment. This often means that the leave taken does not count towards sickness absence which may trigger a review or action by managers. However, one in 25 respondents (4 per cent) had been told they could not take disability leave.
One in 13 (8 per cent) told us they had been threatened with disciplinary action, while fewer (three per cent) had been subject to disciplinary action.
“Been subject to disciplinary action due to excessive breaks, was watched an[d] singled out, being watch on CCTV.” Woman, 36–45, wholesale and retail.
One in 15 (seven per cent) respondents had also been subject to capability proceedings.
“I have been told by OH that HR will seek to remove me on grounds of capability if I don’t come back to work soon.” Woman, 46-55, health and social work.
Loss of hours, job or pay
A number of respondents highlighted the impact having Long Covid had on their job security. One in seven (14 per cent) of respondents said they had:
- been forced to take early
- felt forced to resign to protect their health
- felt forced to leave their job for other Long Covid related reasons or;
- felt they had been singled out unfairly for redundancy.
“I was 55 yrs old when I was made redundant with Long covid symptoms and other disabilities. Since my redundancy, I have taken a much junior role not reflective of my skills, qualification and experience.” Woman, 56–65, education.
“Absolutely awful experience losing my job. They ignored the advice of the OT and instead went down the route of making me redundant. I was the only person in the whole organisation made redundant so it was definitely related to my health issues and my wanting reasonable adjustments which they couldn't justify not giving me.” Woman, 36–45, agriculture.
Additionally, respondents shared the impacts of Long Covid on hours worked, pay and terms and conditions. Seven per cent had been forced to take additional unpaid leave, four per cent had not received a pay rise/bonus when other colleagues had and five per cent had experienced negative changes to other benefits (e.g. their pension etc.).
“Impact on pension and earning bonuses as not fit to work so on half pay and unable to take extra shifts as could do when well.” Man, 36–45, Legal.
Conversely, over one in five respondents (22 per cent) told us they felt forced to work more hours than was good for their health because they needed the money.
“I feel that actually taking care of my health without losing pay or damaging any prospect is impossible.” Woman, 26–35, education.
“Because I had to reduce my working hours I have not been able to finish paying off my debts in order to retire. So I am still working despite having reached the age of 65 and feeling exhausted.” Woman, 36–45, education.
Treatment by managers and colleagues
One in six (16 per cent) respondents told us they had been subject to bullying and/ or harassment, for example being ignored or excluded, singled out for criticism or excessive monitoring of work.
“I have been the subject of jokes or comments about not being fit or healthy enough before Covid, being overweight, about Covid being created to get rid of people like me, being lazy, long Covid symptoms psychological and therefore my own fault, that it can't be that bad etc.” Woman, 26–35, Charity/third sector.
Respondents also told us of negative changes that had been made to their job:
- Seven per cent had been given simpler or more junior tasks at work compared to colleagues in a similar role/level of seniority
- Four per cent had been given harder or less popular tasks at work compared to other colleagues in a similar role/ level of seniority
One in seven respondents (14 per cent) also told us they had experienced other forms of negative treatment, examples of which are provided below.
“I can’t pass a job interview as the adjustments I have in place for my job with brain fog aren’t appropriate for interview.” Woman, 46–55, IT, communications, media and publishing.
“Unable to locum/take extra shifts (as not well enough) to supplement income which will affect maternity pay.” Woman, 26–35, health and social work.
“I have requested ill health retirement but declined as LC is a new condition so permanency cannot be determined.” Woman, 46–55, central government.
“I’ve had to use annual leave to reduce my hours each week.” Woman, 46–55, health and social work.
“I've had an offer to go onto a zero hours contract – I refused. Then after months, a phone call asking me if I'd like to resign – again I refused.” Woman, 56–65, health and social work.
Case studies
The importance of employers supporting workers with Long Covid cannot be overstated. Whilst Long Covid is not linear and people’s symptoms will fluctuate, supporting people means retaining skilled, capable and long serving staff and perceptions on reasonable adjustments need to be shifted to view them as something positive rather than challenges.
The two case studies on the next pages highlight some stories in more detail.
I caught Covid-19 while working on a Covid contact ward in October 2020 and I have been off work since. After 3 or 4 months, we were out of the acute stage. But both my husband and I were still off work as we were experiencing many of the classic symptoms of Long Covid – breathlessness, brain fog, and muscle and joint pain.
I’m about to start a 4-week phased return to work and I’m worried about that. I’m not sure 4 weeks is going to be enough after being so ill for two and a half years. Following Covid, I’m now deaf in one ear, I have blurred eyesight and a heart condition. I’m only 35 but I’m menopausal. And I’ve developed mass cell induced histamine. This means I have an intolerance to most foods, and I can come out in such severe allergic reactions that I have to carry an epi pen with me.
I think employers need to do much more to help staff with Long Covid stay in their jobs. I’m involved in advocacy work for people with Long Covid. People tell me they don’t feel supported and that not enough is being done to put measures in place to retain the workforce. People are either having to return to work wholly – or they’re giving up and leaving work entirely. There’s nothing in the middle.
I know of other nurses who are having to go to employment tribunals for not getting reasonable adjustments. That’s hard when you’ve devoted your whole career and your whole life to the health service. I had a meeting with our CEO and chief nurse over a year ago when I raised my concerns about the lack of support for people with Long Covid at work. We agreed an action plan – but now, some 14 months later, not a single action has been done. We need a step change and real action on Long Covid. People are suffering now. We can’t afford to ignore this any longer.
I work in the universities sector. I caught Covid-19 in March 2020. At the time there was nothing in place to deal with Long Covid problems and little understanding, particularly from my GP. I took two weeks off work following the infection and my employer was very understanding about this, it was during the first lockdown, and everyone was struggling.
At that point I thought I'd recover fully, but after limping on trying to recover for six weeks, while jiggling a shift to remote work and dealing with a young family, I was allowed to go on furlough. When I returned to work approximately two months later, around in summer 2020, I was still not better, and my boss agreed for me to work reduced hours.
Over time it became obvious that I wasn't the only one that was struggling to recover from a Covid-19 infection and as the numbers of Long Covid sufferers increased, my organisation developed some useful support materials and a support group that helps us meet people in the same situation and discuss how we're managing our symptoms.
We've had presentations on how to manage energy limiting conditions and advice on how to broach the subject with line managers. We've even had scientists and doctors give seminars on Long Covid.
It was only after approximately two years (with lots of ups and downs), I began to feel as if I could manage full time work again. Sadly, the system is not set up for such long recoveries and – long before I felt well enough – I had to force myself through many months of pushing too hard to the detriment of both my health and quality of work.
I suffered a reinfection in December 2022, which really knocked me back in terms of quality of life and how much I could work in a week. Fortunately, there is a much better understanding of the problems faced by Long Covid sufferers now, and both my GP and workplace have been more supportive and constructive in helping me return to work. However, there is still a misconception that recovery is just a matter of a couple of extra weeks rest and there seems to be only so much patience offered to people once they're over the acute infection.
All in all, I feel lucky that my organisation has been supportive and proactive in terms of helping people remain in work and balance recovery, or, adjusting to the new world of working with Long Covid. However, I fear that, although my organisation has put in place support for people with Long Covid, the societal shift hasn't yet happened. I feel wary of sharing that I have Long Covid and still try to hide symptoms as I fear that I will get a reputation as being unreliable or lazy. I feel a lot more could be done in educating the wider workforce.
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