Emily Kenway – a writer, researcher and carer – said that the costs of care push most people “onto the breadline.” Kate Garraway’s “abnormal but compelling story” can shed light on the broader issue, she said.
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“If you’re not eligible for social care from the local government, or you are, but you’re stuck on a waiting list for a long time, then you might be paying out of pocket for private care workers,” she said.
Even if you do qualify for free or subsidised care, you incur other costs – equipment, heating, transport, and special dietary requirements, for example.
“When we’re talking about people who are disabled and unwell, those aren’t ‘a nice thing to have’, they’re a ‘necessary to have’. You’ll do anything so that you can meet their basic needs,” said Kenway, who has written a book entitled Who Cares: The Hidden Crisis of Caregiving, And How We Solve It.
“For example my mum was going through chemo. She needed to be kept warmer, so energy costs were higher. She had a transplant during the course of her treatment, which, for some reason, left her completely lactose and dairy intolerant, so we had to buy different food.”
“And in addition to things costing more, you often can’t work. I ended up quitting work entirely… you end up in a really dire situation.”
There are more than 5.7 million carers in the UK, meaning around 9% of people are providing unpaid care.
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According to Carers UK, a quarter of carers (25%) are cutting back on essentials like food or hearing and 63% are extremely worried about managing their monthly costs.
Some 44% of working-age adults who are caring for 35 hours or more a week are in poverty.
Yet government support for carers remains low. For those out of work, carer’s allowance is only £76.75 per week – the lowest benefit of its kind.
“Disabled people and carers are constantly made to feel like they are an inconvenience to society, an annoyance, something to be tolerated and given scraps. It was and is not humanly acceptable to treat people this way,” he said.
“The safety net for families has been shredded. Things must change before there is a humanitarian crisis in an already politically destroyed care sector,” said.
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A report last year by the Family Fund found that nine in 10 families with a severely disabled child are struggling, or falling behind on their regular household bills.
“We must build awareness of carer poverty and the impact of the cost of living crisis on unpaid carers with government, parliamentarians, decision makers and the general public, because as long Covid and mental health issues are increasing, the disabled community is growing and along with it is the care community,” White said.
Adult social care in England is means-tested; anyone with more than £23,250 in capital must fund all their care costs themselves, and those with less have part of their costs funded. However, everyone is expected to make a contribution, which often leaves people spending a large amount of their income on social care, including those who rely on benefits.
Emily Holzhausen, director of policy at Carers UK, said that the government must act to support unpaid carers.
“Many unpaid carers find it hard to balance work with caring responsibilities and an estimated 600 people a day have little choice but to give work altogether, with devastating impacts on their incomes.
“As our population ages, it is likely that most of us will have caring responsibilities in the future. Given that unpaid carers already provide care worth a staggering £162bn a year – the equivalent of a second NHS – it’s clear we must do more to support them and those they care for.”
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Social care has been chronically underfunded for years, said Evan John, policy advisor at Sense.
“With local authority budgets increasingly under pressure, more and more people are seeing their social care support cut,” he said. “This puts even more strain on family carers, and leaves disabled people without the support they need to live healthy and happy lives.”
Sense research found that a quarter of people with complex disabilities who use social care had their provision cut last year.
“Kate Garraway’s story, like countless others across the country, underline the need for urgent social care reform,” John said.
“We hope the government will listen and provide the sector with the funding and changes it urgently needs.”