On the worst nights, Rachel’s wheelchair is her bed. The forty-four-year-old has arthritis of the spine and joints, on top of a string of other health conditions – fibromyalgia, Crohn’s disease and Lupus – and since 2006 she has relied on a care package from her local council to enable her to live independently in a bungalow in the New Forest. But over the past eight years, as social care reductions have spread across the country, in Rachel’s words, her care is ‘just getting cut, cut, cut’.
In 2010, barely months after the coalition government gained power, Rachel’s local authority stopped her visit from a care worker who helped her get ready for bed. Her cleaner and gardener went a few months later; cutbacks meant her council changed eligibility rules so only residents over the age of seventy could get the help. The following year, they pulled her evening care call too, meaning the end of her having a hot dinner. Rachel is often too weak to reach the oven from her wheelchair, and without a care assistant she can’t cook herself a meal. By 2016, Rachel was left with just one forty-five-minute care slot a day: a morning visit to help her quickly get washed and dressed.
In May 2017, even this disappeared. Like many cash-strapped local councils, Rachel’s social worker told her that if she wanted to keep even this provision, she would need to increase her contribution to her care costs. In fact, she would have to cover 90 per cent of it herself. That’s £200 a fortnight – for barely a quarter of the care hours she started with.
In theory, Rachel could use her disability benefits to cover some of the cost but in austerity’s onslaught, nothing hits alone: the same month Rachel was handed her social care bill, she was transferred to the new Personal Independence Payment (PIP) – and promptly had her benefit cut. Rachel hasn’t been able to earn a wage since the late 1990s – before becoming disabled, she worked as a nurse to the elderly – and with no way to pay her council’s costs, she’s had her support package entirely removed. ‘I’ve no care at all now,’ she says. ‘Nothing.’
Look hard enough around Rachel’s bungalow and you can see the signs. The lawn out the front has vanished – a friend dug it up and replaced it with gravel since there’s no help to cut the grass. A group of teenagers from the local Scouts group trims the trees for her; ‘Other than that, it’d be a jungle by now,’ she explains. Indoors, the dust ‘just builds up’: months of having no one to keep it clean. Rachel bought a little ‘robot hoover’ to at least run over the bare floors. She makes jokes – ‘It works as long as you don’t run over it in your wheelchair,’ she laughs – but the impact of having her social care removed is clearly brutal. As she puts it to me: ‘I’m coping on my good days. On bad days, I don’t get washed and dressed.’
If she’s lucky, she says, she gets two ‘good days’ a week: spells where she can lift her arms out of her pyjamas in the morning or transfer herself out of her wheelchair and into a bed at night. To put that another way, with no care assistant to help her, for five days out of seven Rachel can’t shower, get dressed or eat regular meals. To survive, on the days her arms are strong enough to lift a pot, she uses a slow cooker to build up a batch of meals for the week: stews and casseroles stored for when she physically cannot cook. Other days, she eats fruit or slices of bread.
Each month, Rachel goes to her GP for routine blood tests and over the past year, as the cuts took hold, she’s been told she’s now clinically malnourished. Her Crohn’s disease already makes it harder for her to absorb nutrients but without a carer to help her cook, her body isn’t even getting enough iron or vitamins to begin with. Instead, she’s taking dissolvable vitamins from the chemist when she can. She struggles with sleep – sometimes she only gets a few hours stretched over the whole week – and as her pain increases, her energy shrinks.
This is Britain’s social care system – where wheelchair users are left to become malnourished and sleeping in a bed is a luxury. In the years after the financial crash, as George Osborne kick-started the era of austerity, local councils were rapidly starved of cash from Westminster. It was local services – homelessness outreach services, libraries and children’s centres – that took the hit, none more so than social care provision. Since 2010, adult social care has seen cuts of almost £6 billion, with the Local Government Association (LGA) warning eight years later that care services for older and disabled adults were now ‘on the brink of collapse’.
As social care began to hit the mainstream agenda in the post-2010 era, it became commonplace to hear ministers grilled on the subject of the ageing population or to read of elderly people subjected to the indignity of ‘fifteen-minute’ care slots. But as I heard more and more about this crisis, I began to notice something strange: disabled people like Rachel were largely missing from the picture. Listen to news coverage of social care and you will rarely hear the word ‘disabled’ uttered, just as you’ll struggle to see a newspaper story on the ‘care crisis’ illustrated with a stock photo of someone below the age of seventy.
It’s much the same in politics. When Theresa May addressed the House of Commons in December 2016 as the social care crisis began to gain attention, she pledged to ensure people would ‘receive the care they needed in old age’ – as if there are not hundreds of thousands of disabled people who rely on the service throughout their lives.
Meanwhile, the government’s long-delayed 2018 consultation on reforming the social care system failed to include a single disabled person or organisation in the team of ‘expert advisers’. In fact, while promising to work with services ‘which help older people to live independently’, working-age disabled people weren’t addressed in the Green Paper at all. After pressure, disability organisations were offered a ‘round table discussion’ instead. This sort of blackout is part of a wider exclusion of disabled people from the public consciousness and, with it, from media and politics. Just as the voices of those in poverty are largely absent from the national debate, the lives of disabled people are often distorted, marginalised or altogether ignored.
This has rarely been more blatant than in the social care debate. While disability is sidelined, disabled people actually represent a third of all social care users. That means around 400,000 working-age disabled people in England alone rely on a social care package – say, a rotating team of personal assistants – to support them in their home with the tasks most take for granted. On paper, such packages enable basic human functions: getting to the toilet, cooking a meal or leaving the house for work. But really, they are much more than this – a way to gain control, dignity and, above all, a chance to live an independent life like anybody else.
There are now one million disabled people living without the social care they need, according to research by the charity Leonard Cheshire in November 2016. That’s equivalent to the population of Birmingham unable to get dressed in the morning or being housebound. Almost half the disabled people who say they need support told the charity they aren’t receiving any at all. A separate study by Scope in 2015 painted a particularly harrowing picture of the social care system’s treatment of disabled people. The study found that over eight out of ten disabled people don’t have enough social care hours, resulting in their being forced to sleep in their clothes, to go without washing or eating, or waiting fourteen hours to go the toilet. It sounds almost Victorian.
Before the cuts, Rachel used to wear a chord around her wrist – a safety net connecting her to her care company and ambulance service. But in 2016, her council told her she’d have to start paying £100 a month for the privilege. ‘They suddenly took it away,’ she explains. When Rachel’s heart isn’t getting enough oxygen, she faints. Without her lifeline, nowadays, she’ll wake up to find herself on the floor with no way to call for help. Instead, she has to slide herself across the floor and find a blanket to cover herself in. ‘When I reach my mobile to call a neighbour,’ she says. When we speak again, a charity is helping Rachel train an assistance dog to act as her new alarm – philanthropy and a pet filling in the gaps where the state once was.