‘Anti-bac, wipes, washing hands constantly, using my elbow to push lift buttons… You’ve always got to be thinking one step ahead. Do you put your life first or not?’
Natalie Beeton, 27, is talking about the stringent office routine she has put into place ever since returning to work in finance earlier this year.
Until then, she had spent several months shielding, as she suffers from immune deficiency, which means that even the most minor of illnesses can take it out of her.
It also makes the prospect of getting coronavirus very ‘scary’ for Natalie – although, so far, she has managed to avoid it.
‘You still have to live and earn a wage. It’s literally putting yourself at risk so you can pay your bills,’ she adds.
This is the reality that hundreds of thousands of clinically vulnerable people, due to disabilities and conditions, have faced since the end of shielding in April this year.
To many, it’s the most cruel of tossups: health or livelihood.
At first, the government quickly acted to protect the health of these people. However, once economic revival became the priority, many sensed that those with vulnerable health say the unwell and elderly were slowly being forgotten.
Now with each individual business and organisation creating their own rules – sans a centralised effort to help those in compromised health circumstances – some feel it’s become all too easy to lack compassion and neglect the needs of the vulnerable.
When Metro.co.uk spoke to those in this section of our society, it was soon evident how wildly measures vary workplace to workplace.
Natalie explains that because of her health issues she has to rely on immunoglobulin, made from plasma donation, to keep her body as strong as possible. ‘I have to go to hospital every six weeks to have blood infusions because my body can’t make antibiodies to fight off infections and illnesses,’ she tells us.
‘I was lucky at first as my company knew about my condition and wanted me to be the first to work from home, so I got set up early just before lockdown.
‘Then the shielding letter came saying I needed to isolate for 12 weeks.
‘That was a big thing with work. I’m in finance so you’re always having to talk to people in the organisation.’
Initially the government estimated only 1.5million people would need to be added to the shielding patient list, but quickly numbers grew and letters were sent out to 2.2million people.
Within a year, the number had risen to 3.81million people.
Then on April 1, 2021, like a strange April Fools’ joke, shielding ended and this large group of people were, all of a sudden, given no guidance, other than to abide by the same rules and recommendations as the rest of the public.
Taking it upon themselves to safeguard their health, it was reported by the Office of National Statistics (ONS) in July that 29% of those classed as vulnerable decided to continue shielding.
It was a move that would clearly make severe implications on job security, especially as Citizens Advice published a report on inequality in August 2020, claiming that one in two CEV (clinically extremely vulnerable) people were already facing redundancy, partially due to this ambivalence around returning to in-person work.
Three months later, the ONS then reported that 22% were still staying at home, while 68% were no longer shielding but were taking extra precautions.
The mental impact of lockdown has also widely been recorded over the last 18 months, with enquiries for treatment on PTSD and anxiety rising and 35% of CEV individuals noting their wellbeing was depleting.
Yet, for those who had been staying home, this emotional toll felt a necessary sacrifice while doing the utmost to stay safe.
‘Shielding was kind of a relief. If I’d have had to keep going into the office it would have been quite scary and stressful,’ Natalie admits.
‘Once we came out of lockdown last November, it did feel like there was a little bit of pressure to be like: “right, we’re back in the office now, you’ve got to come back”.
‘I asked what was being put in place, such as were there screens up on the desks? In the end, they put some up, which made me feel a little more comfortable.’
Natalie is one of the lucky ones, in a way: her boss listened to her concerns and added safety measures to the working environment, such as mandatory testing and temperature checking.
Even so, leaving the confines of the home was unnerving.
‘Going back was a mix of emotions. It was nice to have a bit of normality… But you’ve always got that worry,’ she says.
To a healthy person it’s ‘only germs’, but to me they could make me very ill
‘I know there’s always colds and flus going around, however with this it’s more known, it’s more contagious, so you’re constantly worrying: “Am I going to pick it up if I go back into the office?”
‘It’s silly little things like if someone sneezes or coughs, you can’t help but immediately think “Am I okay?”‘
Working from home gave Natalie a level of ‘security’ that’s been lost in the office.
Now she has a strict, hyper-vigilant and labour intensive routine when at work.
‘Every morning I make sure I clean my desk down and that no one uses it when I’m not there, which was a big thing to make sure no one else was touching my stuff.
‘It becomes a bit of an obsessive thing in the end, but it’s how you’ve got to live to keep yourself healthy.’
She continues: ‘In the office you don’t have to wear a face mask, but I always make sure I do when I’m away from my desk and I’m the only one that’s doing that.
‘I’ve had a comment before, “it’s only germs”, and that hurt a bit because yes, to a healthy person it’s only germs but to me they could make me very ill because my body can’t fight them off.
‘I do wonder if people think I’m a bit extreme. But it’s not until you live with something and you’re aware of it you understand what it’s like.’
Natalie says that her employer wants everyone back in now, while she tentatively adds: ‘They’ve not been that flexible with letting people work from home.’
However, she has been able to reduce her hours – a decision she made after the thought of going back to the office made her ‘stressed’ – and ill members of staff are encouraged to avoid coming in.
It’s something that gives Natalie a level of ‘relief’, though some colleagues choose to ignore the advice.
‘When you have got a hidden illness, people don’t understand it,’ she explains.
‘I joined a group on Facebook during the lockdown and someone said because you don’t look unhealthy, companies aren’t as quick to get people working from home until the government said they had to.
‘You have to be selfish and put yourself forward sometimes and look after yourself, so I was quite comfortable asking what the plans were in the office before agreeing to come back.’
However, having the confidence to do this only matters if your manager is empathetic.
Josie*, a 50-something from south east England, was illegally dismissed when she made enquiries about working from home when shielding ended.
She has ongoing health issues that mean that over the last decade she’s had several spells in hospitals. Her former workplace were aware of the situation from the start.
As a person of colour, Josie says that Public Health England’s Disparities report also concerned her, as it highlighted disproportionate numbers of Black and Asian people were dying of coronavirus.
Shockingly, she tells us: ‘On the day Boris Johnson called lockdown, I didn’t go into work and I received a call saying “Aren’t you coming in?” and I said “No, I’m shielding and I’ve given you the information”.
‘It was a bit of a battle because even though I was instructed to and a letter was provided to my HR department, they were reluctant to allow that.’
So reluctant, that she actually didn’t get to shield. The best she could negotiate was to go in at times when the office was quieter.
‘They were totally unwilling to allow me to work wholly at home,’ she says.
Josie says that despite the strained circumstances, shielding allowed her to feel a greater sense of control over managing her personal welfare. When it came to an end she asked her boss about additional health and safety measures the company might implement.
When I got my shielding letter it put the fear of god into me
Rather than be treated with understanding, she was spoken to ‘rudely and aggressively’.
She told her manager: ‘I’m keen to come back into the office, but I really do want to ensure that there are procedures in place, because I’m very, very anxious.’
But one day while working remotely her computer was disconnected. ‘I thought maybe it was a fault,’ she says.
‘Not long after, I got an email saying because of my complaint about my disability and Covid, they no longer felt confident working with me anymore.’
With the help of legal aid, Josie appealed the decision and a settlement was arrived at.
However, now out of work for a year, she is still struggling to find a new remote role. On top of that, she also lost a close family member to coronavirus.
‘This added to my anxiety and distress,’ she admits. ‘When I got my shielding letter it put the fear of God into me. They told us we shouldn’t go to our GP face to face, you see the numbers of people dying, family members died from it… I think that fear is still with me.’
Though shielding served Josie and other vulnerable people in many ways, she does believe the advice inadvertently contributed to her fear – after all, Josie asks, why be asked to go to such extreme measures if it wasn’t necessary?
‘In my case it was: the chances are, you will die. So you’re faced with that and you think: I’ve got to be really careful,’ she explains.
Many experts aren’t happy with how those who needed to shield have been neglected since this first severe and extreme set of recommendations that recommended against leaving the home for 12 weeks.
‘Disabled people were forgotten about on every level throughout the pandemic,’ says Fazilet Hadi of Disability Rights UK.
‘There is a line of thinking which assumes that just because vaccines are available, it’s okay for everyone to go about their business in the old ways. Not all disabled people can be vaccinated.
‘Not all disabled people feel safe returning to work after the trauma of the pandemic.
‘Vaccines have reduced deaths and many cases of serious illness, but they are not magic. Covid can be, and still is, a very serious illness for some people who may contract it. This is why flexible working is so important.
‘Government needs to realise that there are still people who need support, and provide it. These will now be a minority. As such, the financial impacts of these (REP) schemes on economic recovery would be negligible.’
And the flexibility is changing lives – 29-year-old Max Horton, from Hull, says he is proof of this.
His manager has allowed him to continue on at home, which has eased his health anxieties.
‘I was terrified by the idea of going back,’ admits Max, who suffers from a severe form of Crohn’s, a long-term inflammatory bowel disease.
‘I’m susceptible to severe illness and I think my condition has been helped a lot at home. It felt like a safe space for me, and to be forced out of that… The idea was incredibly daunting.’
Working in the healthcare sector, he believes, has helped him find more understanding from managers and colleagues.
‘I feel that I’m far more productive at home, I’m far less stressed, which can be a huge trigger for Crohn’s. Having less pressure and more sleep without the commute just means I’m healthier overall.
‘Another benefit is if I’m having a bad day with Crohn’s, then I’m in my own home and I have access to my medication and my own bathroom.’
When shielding came in place, it made Max feel ‘vindicated in the worry’. He explains: ‘It was like “This is what I’ve been trying to tell you, I need to be protected”.
‘It made a lot of people realise how many vulnerable there are in our society. It woke us up to what they are living with day to day.’
Pre-pandemic, Max said working in office could be a ‘struggle’ on a bad day, and he’d worry about catching colds which are ’10 times worse when you’re immune compromised’.
The thought of returning to an enclosed space was scary – and he’s grateful for his flexible setup these days.
‘I was convinced if I caught it I’d die,’ he says. ‘When shielding came in it was like they’re taking steps to recognise there are people in this vulnerable position.’
But is there a worry that their needs aren’t be as recognised as much as they should be any more?
According to the ONS in July this year, mandatory wearing of face masks was found to make 75% of those who are uncomfortable in educational, cultural or hospitality venues feel at ease.
Yet the government hasn’t imposed this – instead the rules are becoming increasingly lax. Even Boris Johnson doesn’t wear a covering on the Tube anymore, despite it being compulsory.
In an effort to help vulnerable people, the charity Crohn’s & Colitis UK has launched a campaign called Are You IN? which has free tools and resources to help companies create a inclusive workplaces for people living with invisible conditions and disabilities.
‘Employers should be discussing the risk of a staff member potentially developing more a severe illness if they catch coronavirus, and how best to support these people,’ explains the charity’s campaign manager, Sarah Hollobone.
As a way forward, she believes this could include continued remote working, maintaining social distancing, or changing hours to avoid peak travel times.
‘With 9.5million people in the UK living with an invisible condition, companies that do not support their invisible condition workforce are missing out on a huge pool of rich and diverse talent.
‘By building trust with employees and having open conversations about reasonable adjustments, employers can help people to feel more empowered, satisfied, and supported at work.’
But how many will be motivated to without a push from the government?
Sadly, not enough, according to Josie.
‘I heard there was a lot of managers denying people the right to shield going about, as there was nobody to police it. And I worked for a small company so they could get away with doing that,’ she says.
‘It was so easy for organizations to fall foul.
‘I just felt sad for just general working people who were forced to go into sometimes very dangerous environments – and there was nothing they could do.’
*Name has been changed.
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