Frances Ryan courtesy The Guardian
A plan to address the acute distress of thousands of people has been repeatedly postponed, leaving them suffering
These days, Ruth sleeps on plastic sheets. A spinal cord injury means she is doubly incontinent. One of her lower legs has been amputated, she has osteoporosis, and she leans on two crutches to walk. Social care used to be the saving grace of each difficult week. Two hours each weekday were set aside to help her wash and do the laundry after an accident, or to help her go to visit friends. But for the four years after 2012, Ruth’s care time was repeatedly cut, year on year, all the way down to just one two-hour slot a week.
In 2016, she fell in her kitchen. The crash to the floor was so severe that she broke her back. That led the council to agree to a care worker coming over every day – but only for a “15-minute pop-in” slot in the morning and at night. “It means they have enough time to make a cup of coffee, or do some washing up. But that’s it,” Ruth says.
Without a care assistant to help with her incontinence, Ruth has no way to clean herself or change her bedding. “I try my best with wet wipes,” she explains. She doesn’t use sheets and a duvet any more because if she was wet at night, she would have to stay in soaked linen for days. Instead, Ruth sleeps on incontinence sheets and pulls a blanket over herself for a bit of comfort.
Ruth can’t wash either; she has been waiting over a year for the council to put grab rails in the bathroom, and she can’t balance on one leg to climb in the bath herself. A wound on her leg developed into sepsis after the skin broke down from not being kept clean. Her skin is covered in sores.
When her bowels are incontinent, Ruth has no way to clean herself. Such is her self-consciousness and embarrassment that she has become, she says, a recluse. “Because I’m not clean, I don’t want to see anyone,” she tells me. “Not that I get out any more.”
A year ago, when the effects of NHS underfunding became dramatically visible, the Red Cross called the sight of patients dying on trolleys in hospital corridors a humanitarian crisis. It would be hard to listen to Ruth and argue that the same cannot now be said of our social care system – that the image of a disabled woman left to sleep in soiled sheets isn’t simply a sign of a struggling care system, but of one that has fundamentally ceased to treat the people who rely on it as anything close to human.
Given that backdrop, it is a scandal that, as MPs head off for their summer holidays this week, there is still no sign of this crisis being addressed. First, the long-promised social care green paper was due last month. Then it was expected before the recess. There is now no due date. Given the scale of suffering, this is culpable negligence. At the last count, a million disabled people were going without the social care they need to eat, dress, or leave the house. and another 1.2 million older people in a similar position The number of older people with unmet care needs increased by 200,000 in the last year alone.
The underfunding in the austerity years, coupled with the long-term push to outsourcing and the scissoring of local government budgets, has left a system on its knees.
Research by the Association of Directors of Adult Social Services last month found adult social care services to be on the “brink of collapse”, as English councils contemplate “truly unpalatable” cuts to social care packages because they must deal with a £2.5bn shortfall for the next financial year alone.
The social care pressure cooker is waiting to blow. Local authorities plan to push through social care cuts of £700m in 2018-19 as they fight a losing battle to balance the books. Crushed by Tory government cuts, more and more local authorities across the country are pushing the burden on to social care users themselves, charging them for a care slot. That’s £200 a week for the right to go to the toilet. Who is charged, for what and how much, is a postcode lottery.
The screw is tightening just as many families, especially those with a disabled loved one, are getting poorer. The new phenomenon of “social care debt” – when someone can’t keep up with payments for their care package – is affecting more than 160,000 disabled and older people, according to freedom of information requests by the GMB, the union for care workers. Some 1,100 people have been taken to court by their councils over the last two years because they need the care but are so poor they can’t afford to pay for it. Others are just going without the care.
How are we going to fix this system? No matter how cash-strapped, councils must begin to set some “ethical red lines”, beginning with the iniquity of care charges, which amount to withdrawing help from someone and then charging them for the privilege of getting it back.
The turnover of care staff must also be addressed as a priority. There should be improved pay and conditions to incentivise workers to see care as a long-term career, giving those who receive it some stability. That older and disabled people are often expected to expose the most intimate parts of their life to a new stranger each day speaks volumes about our neglect for their humanity.
Whatever Brexit deal is finally done, it must allow vital employees from the European Union to continue to come here with ease. And in the long term, politicians must be brave enough to consider innovative alternatives such as co-ops, rather than outsourcing en masse to profit-driven companies.
The most effective way to tackle the social care crisis is to think about it in the round, looking at issues of housing, employment, social security and the NHS. There will need to be increased public spending, for which public consent needs to be won, along with a co-ordinated strategy that acknowledges that social care policy has knock-on effects. Take away the assistant who helps someone get dressed, and that person can no longer work. Loneliness puts pressure on stretched mental health services, and leads to more hospital admissions.
Above all, adequate social care should be understood and argued for as a fundamental right. As policy picks away at the fabric of lives of the poorer members of society, it has become worryingly acceptable to play fast and loose with the dignity of disabled and older people. It’s not too late for us as a society to say that this is not how we want to be.
As her balance deteriorates, Ruth’s doctor has told her she needs to start using a wheelchair. She manages to get out of the house only every few weeks – if her mum, who is in her seventies, can help. As well as her shame at being unclean, Ruth quietly admits that she feels more isolated than ever: “The thought of suicide is on my mind more often than not,” she says. Her despair, and that of others like her, should be on the consciences of MPs this summer. In the autumn, a care revolution needs to begin.