“Every time I went to the hospital for treatment it felt like I was playing Russian roulette with my life,” says Judith Neptial. “I know I’m getting treatment and I know it’s saving my life but I’m terrified to take the bus to get it.” Neptial, 49, has terminal bile duct cancer, and has been forced to quit her job as a psychotherapist while she gets treatment. Taking the bus feels dangerous for someone like her during a pandemic, with her immune system weakened by cancer, but it’s the only mode of transport she would normally be able to afford for the 2-hour, 24-mile journey from Romford on the outer edge of east London to Hammersmith in west London.
In 2020, she was able to take taxis to hospital. Universal Credit – the all-encompassing welfare benefit that Neptial, like millions of British people, relies on to get by – was raised by £20 per week due to the pandemic, so she could afford it. In March 2020, as thousands more people were applying for support having lost work during the UK’s first national COVID-19 lockdown, chancellor Rishi Sunak announced the raise to support “over four million of our most vulnerable households”.
But from tomorrow, those on Universal Credit like Neptial face losing that £20 a week from their income (up to £1,040 annually) as the government seeks to “get people into work” – as Prime Minister Boris Johnson put it – now that the most disruptive phase of the pandemic is over.
This ignores that some 1.6 million of Universal Credit’s roughly 6 million users can’t work because they’re disabled or are currently too sick. For the thousands of people living with cancer and their families who count among that number, it is a dire blow.
“No-one gets up in the morning and chooses to have cancer,” says Neptial. “I think it needs to be recognised that any help you get to deal with that isn’t a luxurious benefit. It’s not like winning the lottery – you need that money to just live.”
The impact of that £20 cut is only made worse by the problems already in the system. Infamous for arduous five-week waiting periods for support, excessive bureaucracy and the fact it covered just 14 percent of average earnings before the uplift, making it one of the least generous schemes in Europe, Universal Credit was far from perfect from the beginning.
And it's coming at a time when that £20 a week is more vital than ever. With a rise in National Insurance costing many households hundreds of pounds a year, energy bills set to soar by £139 a year for the average household and the prediction of upcoming rising inflation experts have warned that the UK is in the midst of a cost of living crisis.
For the many cancer patients who rely on Universal Credit, losing out on some income will simply add to the difficulties already made worse by the pandemic. Leading cancer charity Macmillan estimates that there are 50,000 people now missing a cancer diagnosis thanks to pandemic delays, and there is now a 20-month backlog. Many living with cancer who are immunosuppressed have faced shielding for over a year, at constant threat of dying from the pandemic, only for many to now wonder how they will survive financially after the cut to Universal Credit.
Professor Richard Sullivan, Director of the Institute of Cancer Policy at King’s College London says this cut to Universal Credit will not just drive more people living with cancer into poverty, but will leave more of them dead. “It’s been definitively proved that if you put more people into deprivation cancer mortality goes up and that has a knock on impact on the economic losses to society. Period,” he says.
It has now been three years since Neptial was first given just six months to live. “When I was first diagnosed, dying wasn’t an option,” she says. She had to survive as the sole parent for her daughter. In that time she helped found a support group for Black people living with cancer like herself called From Me To You. “A lot of the members in my group who are going through cancer currently are on benefits and so this directly impacts them,” she says.
The impact of the upcoming Universal Credit cut will be devastating for the countless cancer patients who rely on it. Studies from the Joseph Rowntree Foundation and the Resolution Foundation have found that the cut could push anywhere between 500,000 and 1.2 million people into poverty. The Trussell Trust has estimated that the move could increase food bank usage among UC claimants by 20 percent. Among those numbers are roughly 60,000 cancer patients according to Macmillan. More than 100,000 people with cancer in the UK are already struggling to pay for basic essentials amid the pandemic, and the Universal Credit cut could risk not just worsening their economic ordeal but actually adding countless more people to that number.
“Many people living with cancer struggle to get by because they are simply too ill to work or they encounter much higher costs for bills or travel, while having treatment,” says Eve Byrne, head of campaigns and public affairs at Macmillan. “All too often, our support line receives calls from people telling us that they don’t know how they will pay for the additional heating or electricity they need, or even put food on the table. It makes cutting this support by £20 a week all the more devastating.”
This is adding to an already harrowing situation faced by cancer patients. It took five weeks for doctors to realise that Sarah Whiteman’s husband Michael’s migraines might be a symptom of cancer. In March last year, Michael was eventually diagnosed with a glioblastoma, an aggressive type of brain cancer. Between the treatment and their childcare commitments – they have four children aged between 5 and 18 – neither 38-year-old Sarah nor 41-year-old Michael could work, so the Cambridgeshire family was forced to rely on Universal Credit. Their first application was rejected, and only after outside intervention by Macmillan, were they finally accepted. “It’s been a rollercoaster with the benefits side of things as well as fighting an illness… it’s really hard-going,” Sarah explains. “It was horrible. We’ve got four little children so him being the main breadwinner and then suddenly becoming poorly, I was worried about how we were going to cope.”
The extra £20 a week they receive on Universal Credit has helped buy new clothes after her husband lost a huge amount of weight from treatments, help pay to keep the heating on more often to keep Michael warm, to buy enough food for when his appetite allows him to eat properly and cover transport for their regular hospital visits. Without it, Sarah says she’s worried about what sacrifices they may have to make.
“It’s very stressful and I have to keep a smile on my face for my four children but deep down I worry ‘how do I cope?’ I have a sick husband, money worries, making sure my kids are looked after and my husband is looked after… and who is there for me when I’m having to deal with all of this as well?
“My husband is still a human being and he struggles, so that little bit of money that you’re going to take away from him will make all the difference,” she says.
A Macmillan study for the charity found 70 percent of people living with cancer and struggling with basic living costs during Covid experienced stress, anxiety or depression.
When Ahmed was diagnosed with Stage 4 brain and lung cancer, his wife Kashifa and two children travelled to the UK from Pakistan so he could spend more time with them in his final months. “He needed help for everything and I was unable to work as well because in that condition he needed me 24 hours a day,” Kashifa – who gave only her first name to avoid a backlash from her family in Pakistan for speaking publicly – says.
Ahmed’s first Universal Credit application was rejected with little to no explanation, leaving the family destitute. “I remember actually we were in the hospital one day… We didn’t have enough money to hire a cab, we didn’t even have four or five pounds,” says Kashifa. “It was so terrible that day. My husband was crying and I was crying too.” In the end, hospital staff paid for their taxi home. Even after an outside intervention from Maggie’s, another cancer charity, meant Ahmed and his family were finally granted his Universal Credit claim, it was only ever enough money to survive on because they were staying in the home of Kashifa’s brother.
“At least for their end days it should be relaxing so they don’t have to worry about their expenses and they can spend their last days well actually,” says Kashifa. “Though my husband was always more concerned about what will happen to his kids rather than himself.” Ahmed died in the early months of 2020. Now, Kashifa says having moved out of her relative’s home, despite having part-time work, she’s struggling to support her children on Universal Credit, even before the upcoming £20 a week cut. “It will be devastating… I’m paying rent and bills and even now it’s not enough actually,” she says. “The children go to school and they have so many needs. I'm working as well, but I already have to borrow money for the last fifteen days of the month to pay for things… And even If I earn more I get less Universal Credit.”
The people and families living with cancer that VICE World News spoke to all felt utterly and completely left behind by the government, totally ignored by a system that seems to have forgotten they even exist. When Universal Credit is cut to “get people into work” as the Prime Minister says, it completely ignores those living with cancer who, facing rounds of gruelling chemo and radiotherapy, find working almost impossible.
“When you’re not in control of your own body and then to not even be given control of the choices you can make because of finances, you just feel totally irrelevant. Do you even count?” Neptial says. “If you’re not even worth a £20 pay rise, then what does that say?”