In the spring of 2018, Helen Grater’s world began to fall apart. Her partner, Mark Young, then 55, had been diagnosed with throat cancer. He also had lung disease. He was dying and desperately needed her care.
Grater took unpaid leave from her low-paid job at Sainsbury’s and drew £64.80 a week in carer’s allowance so she could look after him full-time. The money – which, at most, amounted to £1.85 an hour – didn’t come close to paying the bills, but it was better than nothing.
“It was just after his first or second chemo. He was so ill. He was really in a bad way, so it was just a case of needing to stop working and being there for him,” she says.
Eventually, Grater, 55, was able to return to work and did three shifts a week at Sainsbury’s. The rest of the time she cared for her long-term partner as he underwent gruelling rounds of chemotherapy and radiotherapy.
Grater believed she did not need to tell the Department for Work and Pensions (DWP) about her modest increase in earnings because her universal credit had been reduced automatically.
Yet this honest mistake plunged her into a fresh nightmare: the DWP told her she had been fraudulently claiming carer’s allowance by failing to notify the government that she had taken on a third shift. It landed her with a bill for £5,738.40.
“I couldn’t believe it,” she says. “You expect a safety net to be there for when you call on it. There was a safety net but [with] a huge gaping hole in it which I fell straight through.”
Grater had exceeded the then-earnings limit of £120 a week by only a small amount with her low-paid part-time job, but it had pushed her over the DWP’s “cliff edge”.
Unpaid carers are forced to pay back the entirety of their carer’s allowance for every week they were in breach of the strict earnings limit, even if they exceeded it by £1. So a 26-week breach results in a repayment of not £26, but £2,182.
In Grater’s case, even though one additional shift a week would have taken her only marginally over the £120-a-week earnings limit, she had to pay back almost two years’ worth of carer’s allowance.
The government is facing calls to overhaul the system after the Guardian revealed that tens of thousands of unpaid carers are facing severe fines, some over £20,000, and being threatened with criminal prosecution for relatively modest and unintentional breaches of rules branded “cruel and nonsensical”.
Young, now 61, was given the all-clear from cancer two months ago yet still struggles with chronic obstructive pulmonary disease (COPD). But Grater is furious that caring for her partner – and saving the government money by doing so – has left her in debt for the first time in her life.
“I’ve never, ever been in trouble with the police before. I’ve never, ever been in debt,” she says.
“When you’re going through something like that anyway you’ve got enough worries on your mind. It’s the last thing you think about.
“My partner was still very sick, even though he had finished his treatment. He had lost four stone in three months. There’s so many things going on in your head.”
Grater said she had pleaded with the DWP to explain how she had run up such a huge bill and only after many desperate phone calls did she get an answer. But there was no chance of a reprieve.
“I said: ‘Can we not discuss this and I can explain what’s going on?’ but they’re just not interested in explanations. It doesn’t matter what you say.
“They don’t really care. They just want the money. They fob you off and fob you off and then you give up. It’s absolutely disgraceful.”
The DWP has the technology to spot when a carer’s earnings have exceeded the threshold, often through a pay rise or a new job. But, as the Guardian revealed this week, fewer than half of these cases are investigated until much later – landing already-struggling carers with bills running to thousands of pounds.
To this day, Grater blames herself for not telling the DWP she had taken on an extra shift. For years she thought she was one of the only people caught up in this mess. Only this week, after the Guardian shed a light on the ongoing problems, did she realise tens of thousands of others were in the same position.
“I felt this was my fault. I just wanted to get back and get some extra shifts, get off universal credit, and get back paying into the system,” she says.
“I was shocked to see how many people are going through the same thing,” she says. “You know you can’t fight it. You don’t have any hope in hell. No one’s listening to you. They just were not interested.”
She adds: “The next time I will not look after anybody. The government can do it. I was trying to save the government money and do the right thing. You see these reports in the newspaper about companies fiddling for billions and you just think: are you being serious?”
A DWP spokesperson said: “We are committed to fairness in the welfare system, with safeguards in place for managing repayments, while protecting the public purse.
“Claimants have a responsibility to inform DWP of any changes in their circumstances that could impact their award, and it is right that we recover taxpayers’ money when this has not occurred.”
