Over the year, this column has told the personal stories of people behind politics – from young families struggling to get by under universal credit to disabled people having their social care cut. Each of the stories spoke not only of their lives but something altogether bigger: what is happening to Britain’s safety net. This month, I returned to visit three of them.
Edith
When I first met Edith, she had 24 hours before things would fall apart. The 30-year-old has multiple sclerosis, and relies on council-funded care assistants to support her in her two-bedroom adapted flat in Hitchin, Hertfordshire.
For 18 months, this small social care package enabled her to live a normal life: one visit at 7am, to help her to get up for work as a chartered accountant, and another at 8.30pm to help her get out of her wheelchair and back into bed. But last February, her care agency told her it would be ceasing its contract owing to staff shortages in the area. Three months later, barely a day before her carers were set to leave, the council hadn’t found her a replacement. Increasingly desperate, and with no new care team in sight, Edith was told she would have to leave her own flat and move into a residential home.
Edith’s story shone a light on the darkest sides of the social care crisis: one where a combination of cash-strapped councils and outsourcing is leaving disabled people with such threadbare care that some are threatened with being “warehoused” – moved from their family home and forced into residential care often designed for the elderly.
After the Guardian’s article, Edith’s story was featured on the BBC Victoria Derbyshire show and in her local paper. In the meantime, her care agency gave her a week’s extension. With three days left, a social worker called Edith with the news that a care provider had been found.
It was a reprieve – Edith could stay in her own home – but the strain has taken its toll. Stress plays havoc with her MS and Edith became increasingly fatigued and weak, to the extent that she struggled to be able to move herself. Her disability has always meant that she occasionally falls, but by summer it was happening every other day: she would drop something, reach to pick it up and be so weak that she’d fall out her wheelchair. “I had to call my neighbours to come in and help me off the floor,” she says.
This Christmas, she jokes that she’s going to hibernate – a few weeks in her pyjamas, working on physiotherapy to rebuild her strength. At the back of her mind, she admits that she’s worried about how precarious her care situation is. “I’m certain that without the media pressure involved in my case it wouldn’t have been resolved like it was,” she says. “I don’t know what I’d do if it happened again.”
Jaki
In a year in which the failings of Britain’s benefits system accelerated, few stories summed up the realities more than Jaki’s. The 36-year-old – who uses a scooter due to Ehlers-Danlos syndrome and fibromyalgia – was summoned for a “fit for work” test in May 2017 at her local assessment centre in Colchester. But when she got there, she found herself staring up at the building: the entrance had a 5in step and no ramp. Unable to physically get into the building, Jaki was promptly found fit for work “in her absence”; and, just like that, her benefits were stopped.
I spoke to Jaki in May this year, almost a year after she last received her disability benefits. She was malnourished, battling bailiffs and recovering from a suicide attempt.
That story sparked a deluge of emails and tweets from disabled people similarly sent to inaccessible benefit centres, and Jaki’s case was featured on Channel 4 and Channel 5. A month after the Guardian’s story, the department for work and pensions installed a ramp at the Colchester centre. A spokeswoman said this week that more work was under way to make “further permanent solutions to access problems”. For Jaki, though, this is now about more than a simple ramp: with the help of a pro bono solicitor, she’s appealing against her benefit rejection on the grounds that inaccessible benefit centres may breach the Equality Act 2010.
While she tries to regain her benefits, Jaki faces other battles. She has recently moved back into her home after being wrongfully evicted, and is in the middle of trying to get social care from her council. “I’m tired of fighting everyone and everything,” she says. “You can’t juggle that many balls in the air when you’re ill.”
Ruth
Since the cuts came in, Ruth has slept on plastic sheets. A spinal cord injury means she’s doubly incontinent. One of her lower legs has been amputated, she has osteoporosis and leans on two crutches to walk. Social care was always her saving grace – a care worker to help her wash and do the laundry after an accident, or to help her go to visit friends – but as cash-strapped councils cut care packages, by 2016 Ruth was left with barely any help: a “15-minute pop-in” slot in the morning and at night.
Without a care assistant to help with her incontinence, if Ruth had an accident at night, she had no way to clean herself or change her bedding. It meant that for years Ruth slept only on incontinence sheets and a blanket. She had no support to leave the house and, besides, she was too self-conscious to go out. “Because I’m not clean, I don’t want to see anyone,” she told me.
When I first met Ruth in the summer, the government had just delayed its long promised paper on the future of social care. As we caught up this week, the paper had just been kicked into the long grass again; with MPs warning that Brexit was forcing vital domestic business off the government’s agenda. Ruth is in many ways the human casualty of this political climate, in which disabled people are forced to sleep on soiled sheets and ministers are apparently too busy to give it a spare thought.
After I contacted Ruth’s council (kept anonymous here to protect Ruth’s privacy) in July, it agreed to reassess her care package. Within weeks, Ruth was awarded extra hours, from weekly support with housework to a daily 6am call to help her with her washing. It’s brought her a piece of dignity: Ruth can finally sleep on bedsheets again, knowing that someone will be there to change them in the morning.
Things aren’t perfect – outsourcing means that she’s got more than a dozen different care workers from three different agencies – but she’s been given funding to search for a PA instead; one person she can trust and will provide all her care. When Ruth gets her PA, her council will pay for 14 extra hours a week to help her leave the house. It will make a huge difference. When we speak this week, Ruth hasn’t been outside in a month and it’s taking its toll on her mental health. “When I can’t leave the house, I still see the world carry on outside my window. I feel detached from this world, to the point that whatever happened to me wouldn’t have any impact,” she tells me.
It should not take the weight of a national newspaper for someone to be given the social care they need. But for the first time since the cuts came in, what Ruth now has is hope for something better.
“This has given me a chance of life,” she says. “For that I will always be grateful.”
