Long COVID: rethinking ill-health and the world of work 

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One positive repercussion of the COVID pandemic may be an improvement in how we deal with illness at work more generally, but HR must lead the way, finds Jo Gallacher in this month's cover story.

Obsession is defined by the Oxford English Dictionary as the state in which a person’s mind is completely filled with thoughts of one particular thing or person in a way that is not normal. If you think back over the last year, has there been one, overarching obsession which has been constantly on your mind, dictating your every move? 

It may have controlled who you see, where you go and how you feel for so long, it’s hard to remember a time where it didn’t occupy your thoughts. 

The thing, invisible yet catastrophic, is of course coronavirus, and more importantly our preoccupation with trying to not let it harm either ourselves or our loved ones.


What next for HR post-COVID-19?


As devastating as the pandemic has been, many lessons have been learnt. Our obsession with health and keeping sickness at bay has been at the forefront of our minds for so long it may have permanently altered our attitudes towards illness, our bodies and what sickness looks like longer-term.  

The vaccine roll-out, nothing less than a scientific miracle, has helped to assuage our fears, but the anxiety of keeping well may live on throughout the population, and workforce, for some time. One of the cruelties of the virus is that it continues to challenge many long after the contamination period is over.  

The Office for National Statistics estimates 1.1 million people in the UK reported Long COVID symptoms in the four weeks to 6 March 2021. These symptoms include fatigue, breathlessness, anxiety and depression, palpitations, chest pains, joint or muscle pain and ‘brain fog’. All serious issues when dealt with individually, never mind as a collective.  

Because of its newness, the illness is very loosely defined, with different groups experiencing varied and sporadic symptoms. A National Long Covid Taskforce has been set up and NHS England has spent £34 million opening 83 clinics to act as referral centres for those with Long COVID. But how will this illness impact the workplace?  

“With Long COVID, you could be looking at people who have excelled and pushed their body to extremes and now have to re-evaluate their whole way of living,” says Marianne Trent, clinical psychologist and author. “It’s not just the employer who is figuring out how to best support an employee, but also how this impacts the rest of the workforce, which will be a huge challenge. 


“With Long COVID, you could be looking at people who now have to re-evaluate their whole way of living.”  


“There will be a huge re-assimilation for the person to adjust their world and expectations, and for others to adjust to that. This employee may look the same, but they no longer have the stamina they previously had. Long COVID  can question what we know about our capacity to be resilient, we might be able to pull it out of the bag, but at what cost?”  

A University of Leicester study of over 1,000 people who needed treatment in hospital for COVID-19 found that the majority (seven in 10) had not fully recovered five months after they were discharged. One in five of those in the study could be considered to have a new disability, a figure which is likely to translate to many organisations having to deal with the ramifications of this new illness.  

Employees diagnosed with Long COVID may have never experienced an illness quite so challenging, so it’s important for both employer and employee to be patient with how they experience the workplace at this time, says Angela Matthews, head of policy at Business Disability Forum.  

She says: “We are getting questions through our advice service from employers asking ‘what do I need to know about Long COVID?’ When we speak to them, they are worried about missing people who they need to make adjustments for. Symptoms of Long COVID aren’t always going to be visible, especially when people are working from home, so part of the issues with discussions on the illness is how does an employer know if an employee has become unwell and what do they do about it.”  

In such challenging times, Matthews recommends HR tries to open up a dialogue with employees who they suspect may have the illness right away.  

She adds: “In our imperfect world, managers are dealing with a problem with no name. We’re calling on managers to recognise we are in challenging times and that anything could be going on – we are unlikely to know what that is yet.  

The best you can do as an employer is meet the employee where they are and provide them with the support they need, whether that’s a disability, Long COVID or temporary illness. It should all be treated the same if you want your employees to enjoy what they do and be productive.”  


Conversations about employee health:

Coronavirus opens up new opportunities for workers with life limiting illness

Encouraging employees to disclose disability

Disability at work: The majority “silence” the needs of the minority


 

An unknown prognosis  

Knowing what an employee needs often puts the onus on the employee to fully understand a condition they have only just been diagnosed with. For primary school assistant head teacher Lucy Everitt*, the repercussions of the illness are only just starting to unfurl.  

Everitt went from being a fit and healthy 30-year-old to someone who constantly struggles with migraines, fatigue and joint pain following coronavirus. Where she used to socialise and be active on a weekend, Everitt now spends all of Saturday sleeping off the fatigue from her week at work and has only just started to feel better when the working week rears its ugly head.  

She says: “COVID has completely tipped my world upside down, in every aspect. In education, you can’t just request a day off and there’s no flexible working options. I’m in this cycle where I can’t do anything outside of work because I’m so tired – it’s upsetting to think all I’ve got is work.”  

Everitt works in a deprived community with low literacy levels, often supporting children with behavioural issues and a lot of trauma-informed practice. She went back to work after originally contracting COVID in November, but soon had a relapse and was signed off by her GP before Christmas. In that time, her mental health worsened, and she was given a diagnosis of depression.  


"COVID has completely tipped my world upside down"


She adds: “I couldn’t enjoy Christmas because I felt guilty, but at the same time I was so ill. I had post- viral fatigue, COVID toe [red and swollen as a result of the virus] where the nerve endings aren’t sorted and developed mastitis in my right breast.  

“When you work in an industry that is overstretched and underfunded you feel guilty about having any time off. I found it really difficult to get back on top of the workload and ask for any reasonable adjustments. Long COVID is an illness that I don’t know what to ask for and they [medical professionals and HR] don’t know what to provide.”  

Everitt’s story is just one of hundreds of workers grappling with the diagnosis of a new, unknown illness. She is also representative of decades worth of research which often concludes that those living in deprived areas (regardless of whether they earn a higher salary than the area’s average) are more likely to experience ill health. However, Everitt argues her profession has meant she has been better respected and listened to by health professionals.  

She adds: “Every single healthcare specialist has taken me more seriously because I’m an assistant headteacher. Yes, the profession is stressful, but it’s no more or less stressful than before I got COVID or someone from a different background.”  

 

Mentality shift  

As a psychologist, Trent has witnessed first-hand the change an illness can have on an individual and assures HR it’s understandable to not have all of the answers, given the illness is in such early days.  

She says: “For HR, I would say it’s okay to admit you’re not quite sure what the best way forward is, and to look at what can be done. HR needs to look at what the duty of care is and any recommendations. It’s okay not to be certain, but HR must make sure it isn’t accidentally implementing any punitive measures.  

“For the employee, it’s probably going to be the trauma of it all which concerns them the most. The illness itself may not be traumatic but assimilating the differences between what their functions and abilities were like before and after will be hard. People may have to mourn and grieve what they might have lost – they may no longer be able to have a child as they don’t have the energy or get married or go on an adventurous holiday. It really is going to be hard for them.”  

Of course, HR can only help within a workplace setting, but the impact positive guidance can have around illnesses such as Long COVID cannot be underestimated. Unfortunately for Everitt, she feels let down by her school’s HR team.  

Everitt adds: “I want HR to tell me what plate I’m allowed to drop because I’m spinning a lot. In terms of HR, they feel very distant. I know there’s a team of people there but don’t know who they are. Last time I heard, they were setting up a wellbeing committee but that doesn’t seem to include the staff in my school, just the education trust.”  


“I would say it’s okay for HR to admit you’re not quite sure what the best way forward is"


Long COVID has been a wake- up call for Everitt in a number of ways, and she is now querying what she argues are the unrealistic expectations of her employer when it comes to her daily workload.  

“I would like my employer to acknowledge that they can see my workload is unreasonable for someone who’s healthy, never mind someone who’s sick. There hasn’t been any acknowledgement from my employer that I have probably caught a virus from their school that has changed my life for the foreseeable.  

“I realise that it’s not their fault as people, but they are working in a structure that could change my daily working life by reducing my workload or giving me more budget and they don’t. They’ve worked from home throughout it all, I haven’t. So I probably do hold a bit of a grudge in my own mind about the whole situation.”  

 

Fighting the invisible  

The prevalence of Long COVID has reaffirmed the notion of illness as a very personal and specific thing, which can affect everyone differently. This of course creates a large challenge for HR to manage, with no one-size-fits-all solution to pluck out of the employee handbook.  

With most workplaces likely to have had employees diagnosed with COVID-19, the long-term impact could be catastrophic if HR doesn’t plan accordingly.  

Throughout the pandemic, around 350 Metro Bank employees tested positive for COVID-19. The potential long-term effects are therefore well on the radar of its HR director Carol Frost. She says: “We haven’t got any stats on Long COVID yet as it’s not one of those things we quite yet understand fully. But we are very conscious that there are people who have experienced the lasting impacts of COVID, whether that’s physically or mentally. The good news is we have a very supportive culture which takes wellbeing very seriously, and we of course want to support people to maintain them as part of our community.”  

Frost’s strategy is to deal with Long COVID like she would any other illness and try to help employees with both the physical and mental elements. She adds: “We need to be empathetic and understanding as we are seeking to explore with people what support they need so we can create an environment which is as supportive as possible. We haven’t got to the point where Long COVID is a problem, but it’s definitely part of the conversation as we move forward.”  

Acas senior adviser Robbie Palmer similarly recommends HR prepares itself for any and all impacts Long COVID may have. He says: “A considerable number of employees have been or will be diagnosed with Long COVID and therefore the condition is likely to be a factor for many employers in all different manners of workplaces. At this point, we would encourage employers to be ready to approach employees with Long COVID in a flexible and open- minded manner.”  


What HR needs to know about Long COVID:

Long COVID – is it the new Yuppie Flu?

Government pressed to consider coronavirus’ long-term impact on employee health

COVID-19 will have long-term impact on employee health benefits


Any discussion of illness in the workplace inevitably lends itself to a conversation around reasonable adjustments, and Long COVID should be seen as the catalyst for these conversations to take place, Palmer says.  

He adds: “What is reasonable is often unique to each individual situation. We would advise employers to keep an open mind about what adjustments they might make for someone with Long COVID and keep in mind adjustments are not limited to physical things like specialist equipment, but are quite often concerned with working patterns, locations or amended duties too.”  

Acas has created a new guidance page for Long COVID which details how employers should make contact during absences, how they can reassure employees while they are out of work and offer different models for staff to return to work.  

With Long COVID being such a new illness, it can also be challenging to get a formal diagnosis. This may create issues for companies which need a formal diagnosis before reasonable adjustments can be made. Zofia Bajorek, research fellow at the Institute for Employment Studies (IES), is worried about the pressure this will put on both the individual and the organisation.  

She says: “Long COVID is still very ethereal and undefined, and there might be a fear among HR that people can say ‘I’ve got Long COVID’ without being able to display what that is.  

“This can put organisations in a really difficult place as it’s hard to know where organisations stand. I appreciate that SMEs may not have them, but if possible, employers should use occupational health services and advise people to go to the GP to get an expert opinion. We have things like occupational health for a reason and even employee assistance programmes if employees and employers are unsure about the best way forward. They are there for legal and health advice so use them.”  

What employees want more than anything when diagnosed with any illness, Bajorek argues, is a sympathetic ear. She says: “They want to know they’re being listened to and their concerns are being recognised, so it’s important to have a bit of empathy with them. Line managers should also be knowledgeable of organisational policies to signpost people to expert help, it’s just about being human and having a human reaction.”  

 

Changing attitudes  

What is so challenging for many dealing with this new illness is that on the surface, the person struggling doesn’t look sick. From the outside, they appear to be the same as they always were, which is often the challenge of people living with energy-limiting invisible conditions such as ME, chronic fatigue syndrome or fibromyalgia, which have a large symptom crossover to Long COVID.  

Unless you or someone close to you has directly dealt with an invisible illness, getting across just how life-altering they can be is a hard task. This, no doubt, is being understood by those with Long COVID for the first time.  

BDF’s Matthews says: “The symptoms of Long COVID are not exclusive to that condition. They can be the everyday experience of someone managing a condition which is already recognised. Many workers suffer from these illnesses and need support when they don’t realise they have that illness.”  

Employers have a duty of care to make sure employees with these less visible illnesses are given the support they need and to ensure they have created a workplace culture that encourages employees to openly disclose their conditions.  

Bajorek says: “Illnesses like cancer and arthritis come under legislation due to reasonable adjustments. But there are the ‘fuzzy’ elements like ME, fibromyalgia, Crohn’s disease and more hidden disorders. These are difficult to diagnose, and people are less willing to come forward about them and get that diagnosis.  

“These conditions need to be seen as disabling because they are, whatever the definition is. These conditions have an impact on how someone can live their life, and if you can’t live your life to the same extent to someone who can, there is a duty of care.”  

 

The transformative power of flexibility 

With the impact of COVID-19, both from a health perspective and the switch to remote working, Matthews says employers are beginning to realise that employees with energy- limiting conditions or other illnesses do not have to go part time or quit their jobs, but instead can do the same job at different hours.  

She adds: “Employees are now discovering that they are more productive when they’re not working nine-to-five. The BDF is hearing that it’s more popular than ever to have larger work breaks in the day and finish later. This can really help those with energy limiting conditions.”  


"We know that mind fog can be really helpful in that many employees have bursts of energy"


Discussions around Long COVID and its symptoms have also introduced previously misunderstood terms such as ‘brain fog’, which can cause temporary memory loss, confusion and cognitive disassociation, into common parlance. Matthews adds: “I have spoken to employers who have previously associated brain fog with those who can’t concentrate and are therefore an unproductive person. It’s always been seen as something not too attractive to employers and people are often jumping from one job to the next because they don’t know how to work within the structure offered.  

“But we also know that mind fog can be really helpful in that many employees have bursts of energy in between and produce this amazing amount of work. Employers are beginning to consider this a lot more.”  

One company attempting to modernise its views on sickness and wellbeing is global affiliate network Awin, which after introducing a four-day week saw its sick leave fall by 59%. In a bi-weekly survey of employees, the company found that there has been a year-on-year increase of 12.8% in staff engagement since bringing in the trial of the four-day week. Meanwhile, staff rated accomplishment [how much they can achieve] at 9% higher in February 2021 compared with 2020.  

Kelly Pennell, senior HR business partner at Awin, says regardless of whether employees have a mental or physical illness, the positive impact of switching to a four-day week has been tremendous.  

She says: “We have a lot of anecdotal feedback, particularly where people have mental health issues, where they say it does help because they now have that time to decompress. Our employees have more time to do whatever it is that makes you feel better. If you need to take time out, you don’t feel like it’s going to impact work because everyone is working a four-day week.”  

Awin’s four-day policy came out of its focus on employee wellbeing, which includes plenty of internal communications around various illnesses to try and spread awareness.  

Pennell adds: “When we onboard someone, as part of the process they are asked if they have any conditions. However, we don’t force people to share, and instead give them plenty of opportunities when they join.  

“We try to highlight various conditions, and where there’s specific awareness days, we will utilise them to create a conversation. From a management perspective, we do a lot of training around how to support employee wellbeing and how managers can open communication lines.  


"With a four day week employees have more time to do whatever it is that makes them feel better"


We also run particular training on how to manage wellbeing and make sure if an employee does want to come to their manager, their manager is trained on how to talk to them in the most sensitive way. All of the HR team are really visible and show our employees they have someone else who can support them through that.”  

Long COVID is something Pennell and her team is closely managing, but much like other organisations, will be taking on a case-by-case basis. The four-day week trial is still in its early stages, but early success is helping to cement the pilot as a permanent part of the organisation’s flexible working policy.  

Four-day weeks are just one of a multitude of options for those with energy-limiting conditions, and demonstrate a trend towards employers reconsidering what disability and illness looks like.  

Despite the horrors of COVID-19, Palmer is optimistic that workplaces will begin addressing how they treat their staff with long-term conditions. He says: “The anticipated number of people expected to experience Long- COVID means that many workplaces are going to more regularly experience managing employees with chronic illnesses. This is likely to generate more interest, consideration and experience of chronic illness for HR practitioners.  

“There are some remarkable opportunities to learn from the impact of COVID. The scale and duration of the impact of COVID has brought a significant amount of extra attention and experience for many HR practitioners around workplace health and safety, sickness processes and supporting employees on their return to work. The restrictions and closures have also meant that options to increase organisational resilience around absence management have, by necessity, become more creative and responsive.” 

Remote working has been nothing short of revolutionary for those with chronic conditions, given many of the challenges of working with a condition are removed when workplace attendance isn’t mandatory. Employees no longer have to battle with the commute, workplace site and facility limitations, physical contact with other people or lack of proximity to family, carers or local health services. However, palmer warns that remote working isn’t a ‘fix-all’ solution for workers with these conditions.  

He says: “Other challenges need navigating and agreeing, like contact with a manager, deterring presenteeism, pressuring an employee to return earlier than is good for their physical or mental health, team-building, role adjustments, or opportunities only available to on-site staff.  

“The balance of what is available, and what an employee considers their main priority, is likely to inform whether homeworking is or is not an asset. It’s important to keep in mind that many of us are likely to be moving from a situation where 100% homeworking is the only option and having the opportunity to have blended or hybrid working arrangements is likely to offer a better overall solution than exclusively homeworking would.”  

At MetroBank, the pandemic has taught Frost and her HR team to better learn and respond to employees when it comes to both their physical and mental wellbeing. “COVID came at a point in time where mental health and mental illness was on the agenda anyway, but the compound effect of this plus COVID-19 restrictions and people working differently meant we had to change our response to suit the needs of our people.  

“We changed our EAP so we could offer better responses, including a greater number of counselling, referring people to occupational health and introducing a wellbeing hub to encourage our people to focus more on their wellbeing.”  

When it comes to illness, making an employee feel like a valued member of the team is paramount, and that can only happen if HR understands the complexities around these illnesses.  

Frost adds: “We are getting more used to long-term conditions or illnesses, whether its diabetes, Long COVID or ME. As an example, we are getting used to seeing easily identifiable illnesses, like cancer, and less visible illnesses in the same bracket. At the moment, people are less likely to understand how debilitating these less visible illnesses are, so we are trying to get better at understanding what long-term illness might mean.”  


"It’s important to keep in mind that many of us are likely to be moving from a situation where 100% homeworking is the only option"


When HR talks about D&I initiatives, it is most commonly focused on race, gender or sexuality. Though these elements are all vital to a healthy workplace, is it possible that disability and health are the neglected branches of the D&I tree?  

“Our data on disability is quite poor,” Frost says. “When we look at diversity, people are reasonably willing to disclose sexuality, ethnic background, but with disability, they are less willing to share.  

“MetroBank has a disability network called Embody, but it is the network with the least participation. I need to work harder on that and encourage greater participation. That in itself is something I need to improve on. The conversation is there, but we need to put more energy into that.”  

So will the ramifications of this invisible virus, which for so long has occupied and influenced our thoughts, feelings and actions, really change how we see sickness in the workplace? And will diversity conversations more frequently include conversations around disability and sickness?  

“I really do think COVID is potentially changing our mindset on what illness is and the repercussions of what illness can be,” Bajorek concludes. “I would love for COVID to have a real change in society and workplace. Though I think there is an element of short-sightedness and wonder whether we will still be talking about COVID and the health implications after it’s not a present, I don’t know. But we are having these conversations at least.  

“Employees with long-term illnesses are not asking for everything, they just want cost- minimal adjustments that would make the world of difference to them. These people are capable, so HR needs to focus on what people can do, and they’ll see people are able to work for and with you.”  

It’s up to HR to not only facilitate these conversations, but to create the conditions where employees feel comfortable to disclose their personal difficulties without fear of repercussions. There is no reason why a CEO with chronic fatigue syndrome cannot still be a fantastic CEO. Nor should Crohn’s disease hold back a great leader. Our workplaces are diversifying and creating space for different types of people in the workplace. The next step of this is to embrace and accept illness in employees, regardless of what it looks like.  

 

This article appears in the May/June 2021 print issue. Subscribe today to have all our latest articles delivered right to your desk.