Areport by Carers UK has found teachers, NHS staff and other key workers who balance part-time work with caring for loved ones are quitting their jobs to avoid being hit with huge cash penalties for breaching carer’s allowance rules. We speak to people affected by the crisis. ‘I felt like a criminal’: Elizabeth Tait, 59, Thames Ditton, Surrey “We were a normal little family, living our lives, not in the benefit system,” says Elizabeth Tait, who cares full-time for her son, Oliver. “But, with my husband becoming terminally ill with cancer and us having a disabled child, all of a sudden, we were thrust into this carer’s allowance world.” Oliver, now 20, has Down’s syndrome and has a number of challenges meaning he needs 24-hour care. Tait was able to manage Oliver’s care with her husband, David, while they both made work commitments fit around their family. When David became ill and had to give up work, Tait became a part-time supply teacher, juggling work with caring for Oliver and her husband. It was in this period, when Tait was “a zombie, absolutely exhausted”, that she unwittingly went over the Department for Work and Pensions (DWP) strict earnings threshold for carer’s allowance. Given her caring commitments and need to work, she had failed to spot the discrepancy and she was ordered to repay £1,623. “I felt like a criminal, as if I’d committed a crime, because I was trying to understand a system that makes no sense at all,” she says. “I was really, really upset and really angry.” She appealed against the fine to a tribunal judge but lost. The judge apparently told her she should be grateful that her husband could help bring money into the family, and enraged Tait further by telling her Oliver would “grow out of” his condition. In November 2018, David died aged 60 after being diagnosed with terminal cancer. Tait now juggles Oliver’s care while living on savings and her earnings as a part-time tutor. She feels the DWP has no understanding of the realities of life as an unpaid carer and that carer’s allowance is “almost like a trap,” there to catch people out instead of support them. Unpaid carers save the UK about £160bn a year. “If you’re a single parent carer, like I am, you’re completely trapped,” she says. “You’re so exhausted, under so much stress and so much strain that you’re just trying to survive – even having a night’s sleep. Even going to buy the shopping is arduous when you have huge caring responsibilities – and to go through that as well was just wicked.” ‘I feel it’s wrong’: Enka Plaku, 42, Waltham Cross, Hertfordshire Enka Plaku worked harder for her teaching degree than most. She completed the course in English, her second language, graduating in 2010, and went on to teach primary school pupils in London. Now her hard-won degree certificate – one of her proudest achievements – is a reminder of skills she is unable to use. Plaku says she was in effect forced to choose between work and caring for her disabled 12-year-old son, Mateo, due to the DWP’s carer’s allowance policy and a lack of state support for him. Plaku, originally from Albania, was ordered to repay £6,828 after mistakenly exceeding the carer’s allowance earnings threshold between 2019 and 2021, when she earned about £210 a week working as a part-time teacher. Mateo has learning disabilities, including global developmental delay, associated speech and language delay, ADHD, ASD, dyspraxia and behavioural difficulties, and a high pain threshold. Since he turned 12, the social care support for Mateo has virtually disappeared, Plaku says, meaning she is unable to work. Like many of those caring for loved ones, the mother of two told the DWP she was so busy managing Mateo’s needs, working as a single parent and going through a divorce, and teaching from home during the pandemic, that she forgot to check if she had exceeded the £123-a-week earnings threshold. She received a salary increase in late 2019 that, she says, tipped her over the strict limit. She appealed against the fine but the decision was upheld. “Hands up. I’m wrong. But I’m sorry. I’m not the only one,” she says. “I feel it’s wrong. I’m a single parent but I get the same earnings threshold as a couple where the guy can bring in 100k and the mum can full-time care.” The impact of being unable to do the job she loves – and help alleviate the UK’s chronic teacher shortage – has taken its toll mentally, she says. “I hate it because it has affected me and my confidence. I don’t feel good. It’s been nearly three or four years now at home. They want teachers all the time but I’m one of them forced to be at home when I can go in and work. What role model am I giving my son? I’m a stay-at-home mum and I feel as if I’m too young to be a full-time carer.” ‘I had a breakdown’: Helen Stapleton, 41, Chelmsford, Essex When Helen Stapleton received a government-funded “Covid bonus” for her work on an NHS maternity ward during the pandemic, she was grateful for the recognition. But that sense of gratitude quickly evaporated when she was told by the government in 2021 that this small reward had tipped her over the £123-a-week earnings threshold for carer’s allowance. Stapleton, a healthcare assistant, had been claiming the benefit since 2015 after she was forced to give up her full-time hospital job so she could care for her daughter Faith, who has a rare genetic condition called Angelman syndrome. The condition affects the nervous system and means Faith, 14, is non-verbal and has severe physical and learning disabilities. Stapleton returned to work in 2015 on a “bank contract”, meaning she worked temporary hours often at short notice to help plug gaps in the hospital rota. Such contracts are common in the NHS. It meant she could continue working on the maternity ward, on average twice a week, when her husband could take over their daughter’s care. However, this ad hoc arrangement fell foul of the DWP’s strict protocol as it meant that some weeks she earned more than the weekly limit, even though she says that on average she would be under it. “I thought, as long as I stay in the bracket within the tax year, which I was always under, then it shouldn’t be a problem,” she says. The DWP ordered Stapleton to repay more than £3,000 due to the carer’s allowance “cliff edge”, which means carers must pay back the whole week’s benefit – currently £81.90 a week – even if they earn as little as a penny over the threshold. Stapleton says the rules should be changed to allow unpaid carers to work unpredictable shift patterns even though their earnings would fluctuate from week to week. If she worked on a Sunday, for example, she would earn £277 a shift due to “enhancements” for weekend working, but a six-hour shift on a weekday would pay about £70, she says. The experience has left her bruised. “I had a breakdown purely because I was trying to work and care for Faith, who was in and out of hospital a lot of the time. I just couldn’t cope, if I was honest. As much as you love the person you’re caring for – you would do anything for them … it’s draining.” ‘We are forgotten and neglected’: Emma Martin, 53, Crediton, Devon “The whole carer’s allowance system is broken – and it has been for ages,” says Emma Martin, who has been an unpaid carer for her adult daughter Mia for nearly three decades. Martin’s brush with the draconian carer’s allowance overpayment rules came several years ago when she was asked to repay £1,500 after breaching the benefit’s strict earnings limits by about £1.50 a week over a five-month period. She says she earned more than is allowed after inadvertently working the odd extra hour a week in her part-time job as an early years practitioner. The letter informing her of the breach came out of the blue. “I was mortified, really upset,” she says. After paying off the debt – she says the DWP took back all of her carer’s allowance for months – she gave up her early years job partly because it became too difficult to ensure she could stay within earnings limits. The shock and stress of running up a hefty carer’s allowance debt that she was unaware of and struggled to pay back affected her own health. She is angry the DWP took so long to inform her of the overpayment, instead allowing it to accrue for months. She now works several hours a week for a social care charity supporting adults who need help with daily living needs. Her employer is understanding, but staying within the £151 a week earnings limit is still a challenge. Martin is an autism specialist and could earn more than minimum wage, but the strict earnings rules limit the number of hours she can work using her skills. Carer’s allowance is now £81.90 a week. She notes that for the few hours a week she is at work, the professionals who care for Mia in her absence are paid at least £15 an hour. “I go to work because I can’t live on carer’s allowance. I’m proud to be able to be an unpaid carer for Mia but I think we should be paid the minimum wage for a 35-hour week of caring,” she says. Mia, 27, has autism, sensory processing disorder and epilepsy, and needs one-to-one care, requiring constant support. Martin says, if she were no longer around to look after Mia, her care would cost the state thousands of pounds a week. “I have been caring for Mia the past 27 years and I will be for as long as I’m here. But we unpaid carers are so forgotten and neglected. I don’t think people in government have any idea.” ‘It needs reform’: Elizabeth Moss, 57, Snodland, Kent The trauma of being told by DWP officials she had run up £18,000 in carer’s allowance overpayments has stayed with Elizabeth Moss. “It was scary. They threatened to send the bailiffs in. “I was terrified. I’ve never been in debt. My first thought was, are they going to come to my door and take everything away? How will I pay it back?” Moss had breached carer’s allowance earnings limits while working 16 hours a week for the Post Office and taking on a “little” evening job on the side. She accepts she made a mistake but says she did not know about the rules at the time. She now realises the DWP could have spotted the earnings breaches at an early stage and warned her, but did not. Instead, it allowed her – negligently, she believes – to continue working too many hours, enabling the weekly penalties to build up for eight years. Moss agreed to pay back the DWP £50 a month – as much as she could afford. When her health deteriorated and she began to claim the personal independence payment (PIP) benefit, without warning the DWP started deducting £200 a month from her entitlement to help pay her carer’s allowance debt. Although Moss and her husband continue to care for her two adult sons, she no longer claims carer’s allowance as she works full-time as a care support worker. It is strange, she says, that she is not eligible for carer’s allowance, even though she will continue to care for her sons for the rest of her life. Since the Guardian revealed the extent of the carer’s allowance overpayment scandal earlier this year, Moss has made media appearances alongside politicians to debate and discuss the issue. “All the politicians agreed with me: carer’s allowance needs reform. I want something to happen, but I don’t hold out too much hope.” ‘It makes me want to give up caring’: Andrea Tucker, 56, Chessington, Surrey “If only they knew the stress it has caused me!” says Andrea Tucker, an unpaid carer for her mother for 15 years. Earlier this year, she was presented by DWP officials with a £4,615 bill for alleged carer’s allowance overpayments. “I’m constantly anxious, crying and upset, and I’ve never been that sort of person,” she says. “I find it hard to sleep. I’ve barely eaten today because I’m sick with worry.” Tucker says she contacted the DWP’s carer’s allowance section in 2019 to tell them she had returned to work part-time in a charity shop. She was told her carer’s allowance would not be affected if she stayed under allowed earnings limits over each tax year. That information, it turned out, was incorrect. Although her accumulated earnings over a year were indeed under the weekly earnings limit when averaged out, the DWP said she had failed to notify them of changes in her circumstances and had breached the limit on 16 separate occasions over a five-year period. These included months when she received holiday pay, and months when, as a result of annual automatic rises in the minimum wage – that she assumed the DWP would know about – the earnings limit was breached. Tucker says she carefully tries to stay under the limit, to the extent that she works six hours unpaid each month. She is horrified it took the DWP five years to inform her of the rule breaches even though its own electronic records should have spotted the discrepancy after just a few weeks. The repayment has caused her deep anxiety and affected her health – Tucker has been signed off work twice this year as a result. Her worried mother offered to hand over her weekly pension to help pay off the overpayment debt, but Tucker refused. She has formally appealed against the overpayment, and plans to challenge the DWP’s decision at a tribunal, though she has been told this will be several months away and she will have to represent herself, adding to her stress. Carer’s allowance’s rigid rules, coupled with the DWP’s failure to warn her when she inadvertently broke them, have played havoc with her attempts to juggle unpaid caring with work. “I’m having to work for free and earn less money to stay under the earnings limit. It makes me want to give up work and it makes me want to give up caring.” ‘We’re not accountants’: Conor Thackray, 31, Middlewich, Cheshire Conor Thackray began caring for his wife, Raé, five years ago, when she fell into a “really black place” after struggling with borderline personality disorder. She was recently diagnosed with myalgic encephalomyelitis, also called chronic fatigue syndrome. Even though they have three young children to care for, Thackray says he had no choice but to give up his job as an assistant teacher and become a full-time unpaid carer. He applied for carer’s allowance in April 2019 and received a backdated payment of several hundred pounds that summer. The DWP contacted him soon after to say he should never have received most of the payment because it took him over the earnings threshold. He was then ordered to repay about £500. Thackray says he was “criminalised” by the DWP for its own error. “I know in my heart of hearts that I’m doing the right thing, looking after my wife and kids. But you feel that silent judgment from afar. You feel like you’ve cheated. I have to keep telling myself: no, [the backdated payment] was out of my hands.” Thackray finished repaying the debt last year but said the stress of the situation has made him unwell. He cites the hours spent on hold to the DWP’s carer’s allowance department; the lack of understanding or flexibility in the system. He believes there should be wholesale change to the “catch-out culture” of the DWP and will be one of several unpaid carers in a Carers UK delegation expressing their concerns at a meeting with the social security minister, Stephen Timms, on Monday. Responding to the Guardian’s investigation into the carer’s allowance crisis, the DWP routinely describes unpaid carers as the UK’s “unsung heroes”. “It’s just hot air,” says Thackray. “It’s copied and pasted. It’s one thing saying we’re unsung heroes but you can’t then turn around and penalise us for things that are not our fault. “We don’t have time to think about or deal with these things. We’re not accountants. We’re husbands and wives and fathers and brothers. We do what we do out of love and because you can’t go another minute watching your loved one suffer.”