‘We’re invisible’: The hidden lives of the UK’s unpaid carers

The first thing that Katy Styles does every morning is dress her husband, Mark – socks, shirt with buttons and all. Then she’ll get their breakfast, arrange a hospital appointment, and then drive 20 minutes to see her mother to take a load of shopping, clean that house and check her mother’s bank statement. In between cooking meals, she will perhaps change a tap washer, clean the guttering and do some political lobbying, as well as organising repeat prescriptions for all three of them.

If the couple goes out, she helps push his wheelchair – although during the pandemic such occasions have been rare – but more often Katy dashes to the shops or pharmacy alone. It’s a punishing routine, even for someone who used to do triathlons. And although Katy has been told she is starting to lose her sight, she puts her husband’s and mother’s needs first.

“It took a while for my consultants to understand that a 10am appointment is impossible because of what I have to fit in in the morning before getting the train up to London, which is an hour-and-a-half from us here in Canterbury,” she says.

The former geography teacher gave up a profession she loved and ambitions to become an MP or a councillor to care full-time for her husband – whose motor neurone disease won’t allow him to lift an oven pan – and her mother, who has suffered a series of mini-strokes and is becoming forgetful.

“Along with other carers, you put your own needs on the back burner – you don’t have time for self-care,” she admits.

Angie Ralph, 52, abandoned her banking career 15 years ago when her son, Samuel, was born with Down’s syndrome and autism, and then needed to look after an aunt with dementia who was also on oxygen. “For two years we gave her a good quality of life. We loved having her here, but it was hard work.” Angie’s husband, Stephen, likewise gave up his job in a paper mill to look after his mother, Maureen, who also has dementia and now lives with them.

The Ralphs have both had courses of antidepressants, in Stephen’s case largely because his nights were repeatedly interrupted when his mother went wandering.

Katy, Angie and Stephen are among the estimated 6.5 million unpaid carers in the UK whose lives have been taken over by the need to look after elderly, disabled or sick family members, and who say they save the state billions in care costs yet receive scant recognition in return and feel overlooked.

Caring for someone at home is never easy at the best of times but the myriad effects of the pandemic – from the closure of respite centres to the shortage of paid care workers – have escalated the challenges. According to the Joseph Rowntree Foundation (JRF), the pandemic has heaped more financial pressure on carers by driving up responsibilities and the hours they need to put in. Across the country postponing NHS treatment and surgery has allowed people’s health issues to worsen.

Many unpaid carers receive Carer’s Allowance, currently £67.60 a week, which is taxed if the person has another source of income. It leaves more than a million in poverty, estimates the Carers Trust, and these people were hit hard when the temporary uplift in Universal Credit was ended in October.

The JRF says the eligibility criteria for receiving even that payment – “measly”, Angie calls it – for providing care for at least 35 hours a week “isn’t adequately protecting carers from poverty”. Its latest report said around 700,000 carers receive Carer’s Allowance, with a poverty rate of 26 per cent, “notably higher than the overall poverty rate”.

Carers UK, the UK’s largest membership charity for people in this position, found in a survey that 31 per cent were struggling to make ends meet, and a further 18 per cent were in or have been in debt as a result of caring.

“I always said I would not be a carer in poverty, and that working 168 hours a week with no respite and limited broken sleep was enough,” Susan Spoor, 59, from west London, told campaign organisation We Care. “However, it seems that the time has come where I and my two disabled young adult sons will be forced into that poverty, where I decide if we eat or suffer hypothermia. I am ‘paid’ 39 pence per hour Carer’s Allowance to care for two adults.

“Carers and their families must not be allowed to go without food and warmth. We are unable to work a paid job, as we already work 24 hours a day seven days a week unpaid. If we lived in a society which supported those who need care, maybe we could work a paid job. But we don’t.”

Katy Styles says the problem of poverty is massive. “It affects more women than men so our financial futures are uncertain and nothing prepares you from going from employment to claiming carers allowance of £67.60 a week. My pension is totally screwed,” she says with a little laugh.

open image in gallery

Angie, from Herne Bay in Kent, now works in a supermarket part-time, restricting her hours because her Carer’s Allowance would be curbed if she worked even one extra hour a week. Nearly half (47 per cent) of people in a survey by the Carers Trust charity regretted their loss of earnings or job opportunities through being forced to stay at home unpaid.

According to Joe Levenson, executive director of policy and external affairs for Carers Trust, with numbers of unofficial carers having risen during the pandemic, many have not asked for a carer’s assessment, which they are entitled to have carried out free.

But financial worries are only one of the problems facing unofficial carers. The survey found that not being able to get a break was people’s biggest concern, with more than half (55 per cent) saying it was a challenge. “I don’t know of any carer who has had any respite, and I am in touch with a wide network of carers who speak to me across the UK,” says Katy, 54, who founded the We Care campaign in 2018 to lobby for a national carers’ strategy.

“If you did take time off, there would be no one to step in and be you at home. There isn’t a place to put the person you’re caring for where you’d be confident their needs would be met.”

Last month the Association of Directors of Adult Social Services warned of “a national emergency for social care”, exaggerated by the spread of the Omicron Covid variant, warning that “excruciatingly painful choices are being made about who gets support”. The association asked people to “provide care and support for family members who need it” in view of how demand for care outstrips supply.

Like others, Katy pays the price of her unpaid carer role physically. “I don’t sleep well because I’m always on edge worrying about my husband or mum. My health has deteriorated as I’ve not had time to look after myself by exercising. I’ve picked up bladder infections over the past 20 months. You just get really tired.”

open image in gallery

The effect on health and wellbeing was cited by 53 per cent of unpaid carers in the Carers Trust survey but a new respite fund set up by the trust is aiming to raise £3m to give a short break to 30,000 carers – around one in every 215.

Respite, Katy says, would be “amazing” and “phenomenal” to her and those like her. “Just for once I could not worry about everything, whether that’s picking up medicines or arranging appointments. It would be the ability to switch off, perhaps have a lie-in and not rely on coffee all the time to keep going. I haven’t been on a long walk for ages.”

As well as the relentlessness of the situation, the sense of isolation – also magnified by the lockdowns – is a huge hidden issue, and one of the hardest aspects to cope with.

The Carers UK research found that eight out of 10 have felt lonely or socially isolated as a result of looking after a loved one. It runs an advice line and an online support forum and encourages people to talk to other family members, and friends and colleagues.

Angie Ralph says she dreads catching Covid because if she had to self-isolate her son wouldn’t understand why he couldn’t see her. “If my mother-in-law had to isolate it would be a nightmare. It means you can’t go out and do anything and if you’re not going out, you’re losing your friends. It’s quite depressing sometimes,” she says.

Katy says the strain can take its toll on the person being cared for, too. “You put on a mask of being OK, and tell them you’re OK, but is stresses them out as well.”

Life for most unofficial carers is effectively still under strict lockdown, she says. “At the start of the pandemic we felt we were all in it together, then during the past year a lot of people have got back to a semblance of normality – but I don’t think carers have. We’ve been living a very different life. We haven’t gone to the cinema or exhibitions, gone on holiday or met friends. We’ve been isolated – that’s the hardest thing.

“You lose your identity and self-belief and if you are caring for someone who is clinically vulnerable, you are essentially not going anywhere for fear of contracting Covid. We’ve been pretty much on our own for 18 months. The restrictions carers have had to adopt to protect those we care for have been extreme. Some have barely left the house for nearly two years now. The price of contracting the virus and bringing it home to the person you care for is deadly. It’s not worth it.

“We have felt invisible to the government – and most of the public – during the pandemic.”

A government action plan for supporting carers, launched in 2018, expired in 2020, with no replacement. Then at the start of December (2021), following years of pressure on governments of all colours, ministers finally unveiled a plan to reform adult social care, which included spending £25m for work within the care sector to improve services for unpaid carers, including focusing on breaks and peer support. The government also said it would allow disabled people to claim bigger payments from their local authority for home adaptations.

Campaigners welcomed the White Paper – as a first step on a long road of fixing a chasm of underfunding. Helen Walker, chief executive of Carers UK, which has previously called on the government to provide £1.5bn to enable all carers to take a break this winter, says: “Many unpaid carers tell us they are at breaking point, exhausted and on their knees after more than 18 months caring with little or no outside support; 72 per cent have not had a break at all from caring since the start of the pandemic.

“After years and years of underfunding, unpaid carers have been propping up a system on the brink of collapse even before the pandemic. As we head into winter, we are experiencing a chronic shortage of services.

“Unpaid carers and those they care for are experiencing real hardship and suffering… Without additional money and adequate staffing, carers will simply not be able to cope in the coming months.”

Joe Levenson wants the government to instigate a carers’ strategy or action plan, as well as investing more money as needs rise, and integrating health and social care better. “The problem is it doesn’t feel like the needs of unpaid carers are at the heart of government policymaking across government departments,” he told The Independent.

“It needs to be backed up by investment. The recent Social Care White Paper was worthy words but had very little sign of the investment needed to make it a reality.

“We also want unpaid carers to get greater recognition of what they do day in, day out. It’s not a minority sport. There are millions doing this without much thanks or gratitude from government, feeling they’re being taken for granted. This can’t be done on the cheap. We’re paying the price for underinvestment. It’s not just them – they are really concerned about the people they love or are caring for. It’s having an enormous impact on millions and millions of people and the problem is not going away. If we don’t invest and get it right, the human costs will only increase and we’ll be doing a disservice to people in future.” The Independent has asked the government to respond.

Katy admits that while talking to me, half her mind has been on preparing dinner because her husband, who used to be a manager in local government, no longer can. “Family carers are so exhausted. We’re being asked to do more and more to help support the healthcare system, and hospitals want people to be discharged but without packages, so there’s even less time for breaks and respite. We’re at the end of our tether.”