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Not getting adequate care: case studies

Today, much of the mainstream press has run stories about data gathered by Leonard Cheshire which shows that two-thirds of councils are commissioning 15-minute visits for people with disabilities - despite concerns that such short visits deprive people of essential care.

Said the Guardian:

“Leonard Cheshire, the largest voluntary sector provider of disabled care, found that in the past five years the proportion of visits lasting a quarter of an hour or shorter had risen by 15%.

The report, entitled Ending 15 Minute Care, says UK adults take on average at least 40 minutes to carry out essential tasks including getting up, washing, dressing and eating breakfast. However, local councils increasingly expect disabled people to complete these tasks in 15 minutes. Leonard Cheshire said some local authorities were commissioning three-quarters of all their home care visits in 15 minutes or less."

This is a critical issue and is rapidly becoming more so. It has been clear for some time that councils can’t meet demand for social care. Many are tightening eligibility criteria. Our own FOI numbers, reported in the Independent last year, showed that more than 7000 disabled and elderly people had lost some or all of their state-funded support after cash-strapped councils changed their rules on who qualified for social care. Councils have been taken to court for trying to restrict care services, or for increasing charges for care, or capping the amounts that they spend on claimants. Last year, Worcestershire county council came up with a so-called maximum expenditure policy and has subsequently been challenged in court for making that decision.

In the past few years, we've spoken to many people who have struggled to find adequate care for themselves, or their family members. We're publishing some of the case studies that we made with those people on this page. They will give you an idea of some of the problems and challenges that people are having to face and some of the concerns that people have as the government's care bill reaches the report stage in the Lords this week.

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Lynda H:

“I go to Lynda's house and find her unwell and in bed – lying next to a red plastic container that her carer left out in case she needs to be sick. She's alone. She can't get out of bed, because she does not walk well unaided and she's worried about falling.

She is alone “because I've run out of carer hours for this morning,” she says grimly.

Lynda has severe arthritis (she was diagnosed when she was two). She relies on an electric wheelchair to get around. She is entitled to about five hours' care a day. She uses direct payments to pay a care agency to supply her with carers for those hours. This morning, her carer had to leave at 10am to go to her next job.

I found Lynda's front door unlocked when I arrived. She left the door open, she says, because she's expecting a delivery and knew she wouldn't be able walk to the door to get it. Sometimes, she has to do that. “It isn't always gloomy like this,” she says. “Some days you will see me out and about. But this is what happens on days like today... rheumatoid arthritis can flare up at any time. I get these days when I can wake up and I am very shivery...I've had a chest infection, so I think that might have been what brought it on.””

Margaret Cropper:

Margaret has cerebral palsy. On the weekends, she generally stays in bed because the 20 or so care hours that she is entitled to each week don't stretch to cover weekends. She talks more about her situation in this video:

 

People who are fighting to save the Independent Living Fund and the concept of independent living as disabled people:

The ILF was set up in 1988 as a standalone fund which people with severe disabilities could apply to for extra money to pay for added carer hours. That additional funding made it possible for people to pay for enough care to continue to live independently in their homes, rather than in residential care.

But late last year, the government made an extremely unpopular decision to close the fund and devolve it to local authorities. The money will not be ringfenced. It will be left to already cashstrapped councils to fund care for people with the most complex needs – and we can see from today's stories that councils simply will not be able to do that.

Sophie Partridge

In this video, Sophie Partridge - a freelance creative practitioner from Islington and a long-term ILF recipient - talks about the realities of requiring round-the-clock care.

She explains that having PAs (carers) makes it possible for her to live and work. She also talks about why she refuses to contemplate being forced into residential care if she loses funding for carers - if, in future, her council can't make up the proportion of her care package that the ILF currently pays for: “We can't go back 30 odd years. It's just not going to happen...Even if they deported us all tomorrow into some sort of home, homes don't provide those levels of care.


Gabriel Pepper

Gabriel Pepper is 41 and began his working life as an archaeologist after completing a Phd.

He has had three brain tumours. He has sight, speech and mobility impairments. The ILF pays for a proportion of his care. He's also a member of a group of ILF recipients who took legal action earlier this year to challenge the ILF closure decision. That challenge was lost, but an appeal will be heard in the courts next week. “I don't believe the Tory party will ever hang their heads in shame, because they don't have shame, but I believe that it can be shown that they're not above the law.”


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