Cancer sufferers fear being unfairly laid off by employers desperate to make savings as the second wave of coronavirus pummels the UK.
That’s on top of the fact they’re already at risk of piling up debts for heating and transport, discrimination at work, and even homelessness.
These are among the appalling stories HuffPost UK heard from staff at Macmillan’s lifeline support service when we asked how coronavirus has changed life with cancer for Brits.
The charity has taken 10,000 calls related to Covid since the pandemic hit – an average one in three is now linked to coronavirus.
Ghazala Anjam is an adviser and team leader for Macmillan’s work and money team. Since lockdown in March, she and her 276 colleagues in Shipley, Yorkshire, have been working from home trying to help people deal with the massive repercussions of cancer during the pandemic.
Before the virus hit, HuffPost UK spent a day at the Shipley office to find out more about the cases they deal with.
But the story changed days later. Now cancer patients and their families are struggling to cope with the repercussions of a diagnosis and treatment during a global crisis – and all the added financial pressures it brings.
“When lockdown happened, we were inundated with calls from people living with cancer and their carers,” said Anjam.
“People were particularly concerned with issues around work, and worried about their jobs, furlough, redundancy, shielding and general financial pressures as a result of the lockdown.
“People have also expressed worries over being discriminated against when employers are looking to make savings. They are worried about being unfairly selected for redundancy, based on the fact they have been off a long time due to their illness or because they are not able to do their job fully.
“It has been a very tough situation for people, especially when combined with the extra difficulty of people’s cancer treatment being delayed on top of the emotional impact of dealing with their diagnosis.”
Macmillan’s support line is a free and confidential telephone service for people living with and affected by cancer, and can help with clinical, practical and financial information seven days a week.
During the pandemic, up to a third of the 1,000 weekly calls have been about coronavirus. The service has taken more than 10,000 calls related to Covid-19 since the start of lockdown.
But even before coronavirus, a cancer diagnosis meant a huge financial hit for many people.
“We live in a culture now where most people live within their means,” Paul Barron, energy advisor at the Macmillan support line, told HuffPost UK when we spent the day at the Shipley centre. “Previous generations may have been able to save so might have been able to cope with a drop in their income when they had an illness, but the reality is a lot of people don’t have much money in savings.
“When someone has cancer, they can be off work a long time and the financial impact can be massive, particularly when someone goes from full time pay down to statutory sick pay or even no pay.
“People having cancer treatment can potentially be off work 12 months or longer.
“Even when we’ve spoken to people who have had savings of £20,000, that can soon disappear when you’re not working.”
Then there are extra costs like patients needing to travel 50 miles or more daily for radiotherapy treatment for several weeks, and higher heating costs due to feeling the cold more.
““We live in a culture now where most people live within their means. Previous generations may have been able to save so might have been able to cope with a drop in their income when they had an illness, but the reality is, a lot of people don’t have much money in savings."”
- Paul Barron, Macmillan Cancer Support
“People with cancer are having to juggle their finances,” said Barron. “They are having to pay extra money due to their treatment. But then how do they pay their bills?
“I often hear people say: ‘If only I had some money put aside.’ But the reality is with the housing market and the cost of living, most people cannot afford to put money aside.”
Latest figures from research by Macmillan reveal more than a third of people with cancer (39%) are severely financially impacted by their diagnosis. Of those, almost one in three (31%) have had to take out a loan or go into credit card debt.
Macmillan Cancer Support describes cancer as being like a “financial wrecking ball”. The diagnosis can result in reduced income, rising household bills and mounting transport costs to hospital appointments.
The research showed one in five UK adults have £250 or less in savings while one in eight don’t have any savings at all.
Calls to Macmillan’s financial guidance team on the support line have been increasing steadily over recent months and are now 32% higher than during the first month of lockdown.
Every day, Macmillan staff hear from people living with cancer who are desperately worried about everything from paying their mortgage to putting food on the table or switching the heating on.
One recent caller, a single woman, went from paying £70 a month for her gas and electricity to paying £220 a month while going through chemotherapy – which makes people more susceptible to the cold. She was only receiving statutory sick pay of £94 a week.
Support line staff first ensure callers are claiming all the benefits they are entitled to, as well as looking at their heating appliances and energy efficiency, whether they’re on the right heating tariff, any grants they can access, and directing them to debt help.
Barron said: “Sometimes, people are more worried about their financial hardship than the cancer and treatment itself.
“Some people end up forcing themselves to return to work sooner than they should due to financial worries.”
Legally, employers cannot discriminate against cancer patients or treat them less favourably, but not everyone knows that.
Anjam said: “We encourage people to have early conversations with their managers. The legal obligation only kicks in if their employer knows they have cancer.
“We support people, make them aware of employment rights at work and help them think about the kind of adjustments they might need and how to ask for them.”
Anjam says the team also helps people deal with victimisation and harassment. “Sometimes, callers tell us other workers were making jokes or comments about their colostomy bag.
“Making belittling comments is discriminatory so we let them know this is not acceptable.”
One case that sticks in Anjam’s mind was dealing with a man in his 20s who had been diagnosed with testicular cancer. He returned to work in a male-dominated factory environment and kept hearing “jokes” about the fact he had lost a testicle.
“He called Macmillan’s support line and told us he felt he was going to have to leave his job,” said Anjam. “He did not feel they were doing it maliciously and said it was ‘banter’.
“But he felt singled out and just wanted to go to work and do his job.”
Macmillan explained how the language could be considered discriminatory.
With Macmillan’s help, the man raised the issue with his line manager who spoke to the people concerned informally.
“The outcome was his co-workers felt uncomfortable as it had not been intentional and they didn’t realise the effect they were having on him,” said Anjam.
“The man called us back and said the outcome was very positive and he was a lot happier and was no longer looking for another job.”
Daisy Cox, welfare rights advisor, said she often comes across people who are in arrears with council tax or energy bills. Some are having to use food banks due to the drop in income or because they are waiting for Universal Credit.
Cox says she was dealing with one mother-of-four whose youngest was only 10 months old. She had been diagnosed with cancer shortly after his birth but delayed treatment as she was breastfeeding.
“She waited eight months and the cancer had progressed. But she had split from her partner and was facing eviction from her private rental property.
“This lady was desperately fearful of being evicted and had lost a lot of weight through worry and the chemotherapy.
“I signposted her to Shelter and an organisation called Mummy’s Star for mothers who are diagnosed with cancer while pregnant or shortly after giving birth, and we also applied for a grant for her.”
Michelle Sterling’s world was thrown into turmoil when she was suddenly diagnosed with leukaemia – and then had to deal with being made homeless and facing the prospect of life on the streets.
Michelle, 60, who lives near Cardiff, was fit and active before her diagnosis and had even climbed the Himalayas before the disease struck.
She became ill with what she initially thought was a chest infection but ended up in hospital where tests showed she had acute lymphoblastic leukaemia. She was so ill, doctors expected her to die.
Michelle began chemotherapy treatment straight away and her hair fell out. But she then faced further trauma when she lost the roof over her head.
Michelle, whose husband had 16 years earlier from a brain tumour, explained: “I was a mature student at university studying geography and geology at the time and was in my second year.
“I was renting a room at another student’s house and had only been there a couple of months when I was diagnosed with cancer.
“Before going to university, I had sold the house I had with my husband and got rid of all my furniture and I went travelling for a couple of years before starting university.
“Unfortunately, two days after my cancer diagnosis, the student kicked me out as she did not want cancer in her home.”
Michelle was classed as homeless but she wasn’t able to go into a hostel or sheltered accommodation as the cancer and chemotherapy meant she was very prone to infection.
She spent six weeks as an inpatient, then another four going into hospital for daily treatment. Luckily, her university lecturer gave her a room at her home for that month.
The council found Michelle a flat – but it was completely empty. “I had sold all my worldly goods and had no money to buy anything I needed,” she said. “Luckily, I have amazing friends and they rallied around and got me things like a sofa.”
Michelle was put in touch with Macmillan through her specialist nurse at the hospital and they gave her a grant which she used to buy a secondhand cooker, fridge and washing machine.
Macmillan also sorted out Michelle’s disability payment in advance so she had money coming in. “Macmillan were a complete lifeline,” said Michelle. “I was so grateful to have that grant which allowed me to get back on my feet and come out of hospital.
“Without Macmillan, I don’t know where I’d be.”
She added: “To suddenly go from being so healthy and active to being diagnosed with cancer and almost living on the streets was very surreal.
“The distraction of being homeless was such a worry that I almost forgot I had cancer as I didn’t have time to worry about what was happening to my body.”
Michelle, who is now in remission, told HuffPost UK: “Every person that has cancer will have a financial burden in some way unless they are lucky enough to have thousands of pounds sat in the bank.
“Dealing with cancer and financial difficulties is hard enough, but it must be even worse for people during the Covid-19 crisis. People are very scared and stressed.”
“Receiving the life-changing news that you have cancer, for some people, is nothing short of a financial wrecking-ball.”
- Lynda Thomas, chief executive at Macmillan Cancer Support
Lynda Thomas, chief executive at Macmillan Cancer Support, said: “We hear from people living with cancer every day who are desperately worried about their finances – from worrying about paying their mortgage or putting food on the table, to holding off on switching the heating on when they need it and sitting at home chilled to their bones.
“It’s no exaggeration to say that receiving the life-changing news that you have cancer, for some people, is nothing short of a financial wrecking-ball.”
Anjam says she and her colleagues are gearing up for a fresh wave of calls as the furlough scheme comes to an end.
“But with the fundraising crisis facing charities, we are not immune either. We are trying to juggle the financial impact on our service with trying to support cancer patients the best we can.
“We want to make sure any monetary and work issues they have are being looked after so they can get the support they need.”
She added: “It has been an honour to be able to carry on delivering this service for people living with cancer through these very difficult times. I feel very proud of everyone at Macmillan.”
Anyone worried about their finances can speak to the Financial Guidance team on Macmillan’s Support Line on 0808 808 00 00 from 8am to 8pm Mon to Fri.