Despite being in pain and needing fillings, Rachel Mewes hasn’t been able to visit the dentist in three years, as she can’t afford even an initial appointment.
‘I would also like to buy some new clothes, but on £67.60 a week that barely even pays for the petrol to take my daughter to school and back,’ says the mum-of-one.
Rachel, 39, and partner Marc, a retail worker, are unpaid carers for their three-year-old daughter Betsy, who has Down’s syndrome. The £67.60 she refers to is the amount Rachel receives in Carer’s Allowance – which includes last month’s recent increase, which added on just an extra 35p a week.
It means that Rachel receives only 40p an hour for providing care for Betsy around the clock.
‘It’s quite a shock and you do have to make some rapid adjustments to your lifestyle in order to survive,’ she admits. ‘We live in abject poverty and nobody seems to recognise that. The Government really needs to do something about it.’
According to the most recent DWP figures, over 1.3million claim Carer’s Allowance, which is payable to people who care at least 35 hours a week for a relative or friend that receives a qualifying disability benefit.
However, the true number of unpaid carers across the UK is far higher, according to charity Carers UK.
They say that pre-pandemic there were an estimated 9.1million people not being paid to care for someone else, but that figure has gone up even more in the last year, to around an additional 4.5million, because more people started caring for a disabled, older or seriously ill relative or friend as a result of the Covid crisis.
Poverty among carers is a long-standing issue, according to Professor Sue Yeandle, Director of the Centre for Care, Labour and Equalities (CIRCLE) at the University of Sheffield.
‘It’s what prompted the first campaigners for carers to press for what’s now the Carer’s Allowance in the 1970s,’ she explains.
‘Caring is a normal part of daily life. No-one suggests every hour supporting a relative should be compensated. But it can’t be right that people devoting the equivalent of a full working week face poverty and lower lifelong incomes.’
Rachel, who lives in Northumberland with her family, worked as a teacher during the first year of Betsy’s life. But to fight for access to services, healthcare and education, she had to become her daughter’s full-time carer.
‘There’s so many women like me who have had to give up their careers in order to give their children basic human rights,’ she says.
When Rachel applied for Carer’s Allowance in 2019, she had to take a drop of over £20,000 drop in wages to receive just over £3,000 a year, as recipients cannot earn more than £128 a week from paid employment.
‘It’s really a case of having to strip everything back stuff that other people would consider a necessity, we can’t afford now,’ says Rachel.
‘We can’t go on holiday anymore. I don’t buy clothes or luxuries for myself. I can’t even afford to go to the dentist and haven’t been to the hairdresser for years.
‘I would just like to be able to do one of those things. It’s self-care – and healthcare – at the end of day. It’s not a good way to live.’
Before the pandemic around 600 people gave up work every day to care for an older or disabled relative, according to research conducted by Carers UK in 2019. Women are disproportionately affected, on average becoming carers more than 10 years before men.
As a full-time carer for her husband Mark, who has Motor Neurone Disease, Katy Styles, 52, receives the Carer’s Allowance. She also helps her mum, Sandra, 82, with online food shopping and bills.
Katy recalls hearing the news of the 35p increase last month and how she worked out it would take two weeks worth (70p) for her to buy her a can of Chancellor Rishi Sunak’s favourite soft drink.
‘I thought that just about summed up really how we all felt,’ says Katy. ‘I’m never lost for words, but I absolutely am over this. I think it’s because I know how tough it’s been this year.
‘The increase is always really small, but knowing how much we’ve had to sacrifice, not just as a society, but as carers ourselves.’
Having MND means Mark, 52, has limited mobility and issues with breathing and swallowing. Katy does all the cooking and cleaning, and supports her husband with dressing and washing. She organises hospital appointments and advocates for him over the phone.
‘I didn’t realise I was a carer for quite some time,’ says Katy. ‘It wasn’t until I was advocating in a meeting for other people with MND and the councillors that I was talking to said, “Katy you’re a carer”, but at that point I thought that I was just being his wife.’
In 2018, Katy founded the award-winning We Care Campaign with a mission to achieve better recognition and appreciation for unpaid carers.
In a recent poll the campaign carried out among carers about how they’d been affected by the pandemic, many shed light on the increase in weekly outgoings due to things like having to shop online, rising household bills, mobile data, and having to buy PPE and hand sanitiser.
‘All of these things have added up and yet we still only get £67.60,’ says Katy.
After just eight months of the pandemic, Carers UK revealed that unpaid carers had saved the UK state an estimated £135billion – equating to £530million every day.
The charity also discovered 81% of carers have been providing more care during lockdown, often at the expense of their mental and physical health.
‘Actually what we’ve done has helped protect the NHS and protect people from going into care homes, and we know the consequences of people going into care homes,’ says Katy.
In the first six months of the pandemic over three-quarters (79%) of carers had not been able to take any, or sufficient, breaks, research found.
‘It’s interesting that the only break I had during lockdown was to go for my own medical appointment,’ Katy admits.
Respite is something Rachel also has not been able to access during the pandemic.
Due to having reduced lung capacity, her daughter Betsy was taken out of the nursery she attended three days a week and the family began shielding.
‘It has been tough,’ admits Rachel. ‘There was one point when we were fighting to leave the house.
‘There was no respite or childcare. Her grandparents normally take her for a couple of afternoons so you get a chance to do your housework and get a wash, because when you’ve got a child with a learning disability it’s not a case of they can be left alone.
‘Betsy needs supervision 24/7 to keep her safe. If I’m looking after my daughter, I don’t have the luxury of getting a wash that day. I have to wait until my partner gets home.
‘We do need that respite care in order to be able to keep ourselves well – getting a wash is a basic human need really, isn’t it?’
Helen Walker, Chief Executive of Carers UK adds that, ‘Unpaid carers are taking on more care than ever and have been struggling with the increased costs through the pandemic, yet they have received little targeted financial support to help them.’
In February the charity delivered a letter to Rishi Sunak signed by over 5,000 people urging him to award this supplement to Carer’s Allowance, which would match the support given to recipients of Universal Credit – an extra £20 a week first awarded for a year in April 2020 and then extended for a further six months.
‘The earnings limit, currently £128 a week, must also be increased so that carers can work at least 16 hours,’ explains Helen. ‘With the low level of Carer’s Allowance and being limited in their ability to earn, too many are forced to turn to foodbanks or switch off the heating.’
Research from the Universities of Sheffield and Birmingham, in partnership with the charity also found that more than 100,000 carers had to rely on a foodbank during the first lockdown.
After a petition was launched earlier this year receiving over 18,000 signatures, calling for Carer’s Allowance to be increased in line with the National Minimum Wage for 18 year olds at £6.56 an hour, the DWP responded that the benefit is ‘not intended to be a replacement for a wage nor payment for the services of caring.’
The response continued: ‘The principal purpose of Carer’s Allowance is to provide a measure of financial support and recognition for people who choose to give up the opportunity of full-time work to provide regular care for a severely disabled person.’
Rob Gershon, 48, has been a carer for his wife, who has Multiple Sclerosis, for over 15 years, and says this response is offensive.
‘The specific words in the replies to the petition are just a reminder that people in Government have no grasp at all of what being an unpaid carer entails,’ he says. ‘Especially the stuff about choosing not to be in full-time employment. That’s not a choice.
‘Carer’s Allowance itself is not sufficient for anything, let alone for the hours that we do. Nobody would realistically take a weekly income of £67,’ adds Rob.
Rob, from Hampshire, says he doesn’t want sympathy or to be called a ‘hero’, rather, he would like more recognition for the work that he and other unpaid carers do.
‘I spend much of my waking time being a carer,’ he explains. ‘We’re fortunate that we get direct payments so that we can have some paid carers in, but that hasn’t been applicable for much of the pandemic because we’ve been self-isolating.
‘Then there’s the evening and night-time stuff – waking up at 1am and 3am and 4am to turn my wife over or get a drink and attending to all the other things that can happen at any time of day.
‘You’re essentially on call 24 hours a day, seven days a week. It’s physically, mentally, and emotionally draining.’
Although currently unable to work due to the pandemic, Rob has previously had paid employment – but he points out a further problem with the Carer’s Allowance eligibility criteria.
‘If you are fortunate enough to have the time and the capacity to do 16 hours of work at minimum wage, then you earn too much to claim it,’ he explains.
Professor Yeandle says helping carers stay in work should be a top priority, not only to receive a wage, but to be able to build up pensions and aid mental wellbeing.
‘Workers who provide regular unpaid care need flexible support at work and paid time off when care demands are intense,’ she says.
‘The Government is planning a new right to carer’s leave. This is good, but won’t help low income carers unless they’re compensated for lost pay. Other countries offer this, so why can’t we?’
Labour MP for Worsley and Eccles South, Barbara Keeley, is also calling for change, having led an adjournment debate in the House of Commons last month for a new National Carers Strategy, which would identify and support unpaid carers.
During the debate she called the recent Carers Action Plan, which expired at the end of 2020, a ‘flimsy document’, which ‘offers few substantial commitments to improve support to carers and lacks the funding needed to transform services.’
Barbara cited the example that many GPs and other NHS staff are unaware of carers’ roles, meaning they struggle to access support.
‘Carers need support from across Government, rather than one-off announcements, which only touch one area of their life,’ explains Barbara. ‘Giving them an increase of only 35p a week in Carers’ Allowance is nothing short of insulting.’
‘Financial, physical and mental pressures on carers are intensifying, so continuing as now is not an option,’ adds Professor Yeandle.
‘Our millions of unpaid carers are like an insurance policy for the nation’s health and care system. Invest in them week by week, and avoid costly longer-term outcomes.
‘If caring breaks down, costs will rise for everyone. Not just carers.’
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