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Working when you’re clinically extremely vulnerable – your stories

We've spoken to people with blood cancer about how coronavirus affected their working lives in 2020, the decisions they made about work and the support they’ve received.

Please note, from 26 December 2020, clinically extremely vulnerable people are being advised not to go out to work in Northern Ireland, Alert Level 4 areas in Wales, Tier 4 areas in England and Level 4 areas in Scotland (if your workplace can't be made COVID-safe).

“I feel anxious about going to work.”

Steve, warehouse assistant

Steve shares his workspace with up to 15 other people from different households. There’s no ventilation or windows. He’s been in remission from follicular lymphoma for two years and is very worried about the risk of working.

Steve went back to work in August, when the number of people infected with coronavirus had dropped in his area. But it soon became clear that not everyone at work understands the risks of coronavirus. “There are a few conspiracy theorist folk at my work. I constantly have to remind others to keep their distance, keep their masks on and so on. The working day can get very stressful sometimes.”

Steve’s employer has generally been supportive since his lymphoma diagnosis and initially allowed him to work three days a week with two days on furlough. But as business picked up again, Steve had to go back full time. He now cycles to work, which can be exhausting on top of the manual work he does. He worries about pushing himself too hard. On the positive side, he says, “I enjoy the physical activity and my mental health is a bit better in some ways being at work.”

“I gave up my clinic space, but I’ve been able to carry on.”

Katie, Naturopath

Katie has been living with chronic myeloid leukaemia (CML) for 13 years. She’s a self-employed Naturopath and has managed to keep working throughout the pandemic.

At the start of the first lockdown, Katie left London where she lives and works to stay with her parents – more for the company than because she was worried about coronavirus. “I wasn’t actively shielding because my immune system isn’t particularly affected by the CML. I gave up the clinic space where I was working but was able carry on giving consultations virtually during the initial lockdown.”

Katie returned to London when lockdown eased. As a registered health professional, she’s permitted to do home visits as well as virtual appointments. She’s received additional support when needed from Universal Credit and one grant from the Self-Employed Income Support Scheme.

“One thing that’s benefited my work is that I’ve found people are more open to online appointments. That means I can take clients outside of London. I’ve even got one in Jakarta!”

“The pandemic has made me change my work plans completely.”

Angela, global coach and facilitator

Angela has never allowed her diagnosis of chronic lymphocytic leukaemia (CLL) and skin cancer to prevent her working all over the world as a coach and facilitator, but overnight she went to zero income with no prospect of earning anything until she could travel again.

“I’ve worked extremely hard to re-design my work to be able to deliver some projects virtually, but only one client has been open to this and all the others have simply cancelled.” She applied for and got two Self-Employed Income Support Scheme grants but has been forced to change her future work plans.

“Having spent 21 years building and sustaining a very successful business, I’m distraught that it’s been curtailed so abruptly. As I have very little work planned for 2021, I have decided to go part-time in February and draw from my personal pension earlier than I would have liked. To soften the blow, I’ve built a shepherd’s hut in my garden and this will be my art studio and reading room. I hope to work three days a week, and then be creative and relax on the other days.”

“I’m very stressed, but the online forum helps me feel less alone.”

John and Mandy, supermarket customer assistants

John is in remission from follicular lymphoma. He shielded on full pay for the first 12 weeks of lockdown and then received company sick pay, which was equal to his normal pay. His wife Mandy, who was working at the same store, had to take unpaid leave in order to shield with him.

John went back to work full time when shielding stopped at the end of July. His employer made efforts to make the store COVID-safe, but a lot of customers didn’t follow the rules. Once the staff started wearing masks all the time, more customers followed suit, and he started to feel safer.

John shielded again through November and is now back at work. Mandy now works as a cleaner at a local college – a lower risk environment because of the early hours. She remains worried about John working.

“At the end of the first lockdown, John’s consultant said that as he hadn’t had chemo for a year his immune system may have repaired a little. This made him feel less stressed. I, on the other hand, have been very stressed the whole time. I have just been terrified of losing John to the virus.”

The couple have coped by exercising regularly and allowing themselves treats like a glass of wine in the evening. Mandy has also found her GP and counsellor very helpful, along with the Blood Cancer UK online community forum. “It helped me feel less alone in my fears and realise I wasn’t the only one worrying.”

“I feel guilty and helpless being on furlough.”

Geri, domestic energy assessor

Geri is living with chronic lymphocytic leukaemia (CLL). Her job involves visiting people’s homes to assess them for an Energy Performance Certificate. She works for her husband – also an assessor – and has been on furlough since March, when she got the shielding letter and her GP advised her to stay at home.

Towards the end of the first lockdown, Geri and her husband discussed how she could safely go back to work. They decided to ask householders to leave the property during the survey, or wait in one room, and open the windows 20 minutes before the start. Most people agreed, but Geri’s husband found that when he turned up, they told him not to worry, they didn’t have the virus, and didn’t stick to the agreement.

Because of the risks, Geri and her husband decided she should stay at home. But not working has taken its toll on both of them.

“My husband is under a lot of pressure to get all the work completed and I feel guilty and helpless as I'm sat watching him stress. He's also very concerned about catching the virus and bringing it home to me. By the time furlough ends in April, I hope the vaccination programme will be well under way, so I'll be safe to go back to work.”

Talk to us

The pandemic has had a huge effect on people’s livelihoods and as these stories show, the emotional cost has also been high. While everyone featured in this blog has found some way to reduce their risk or cope with the worry, they remain in difficult situations, facing tough decisions.

If you’re worried about your work or finances, we have information on our Money and work page. Or contact our Support Services Team who can talk to you about your options.

We’ll continue to advocate for people with blood cancer and their families during this pandemic and beyond. Find out more about our policy work, including our ongoing campaign to protect workers with blood cancer from coronavirus.

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