Hellen Keller
If he’s lucky, Frank Bailey gets a good night’s sleep twice a week. The rest of the time he is on call and spends the small hours worrying, waiting for a bell to ring, to signal at best that his sick wife, Faith, needs help out of bed; at worst that she is struggling for breath and he will have to call paramedics to take her to hospital.
At 80, Frank suffers from angina, arthritis and limited use of his left arm because of tendon problems. He has been a carer for Faith since she was diagnosed with life-limiting heart and lung disease four years ago.
Asked what is wrong with her, Faith, 72, lets out a sigh, shakes her head and then, rummaging in her handbag, hands over a well-worn piece of paper on which is typed a catalogue of afflictions: diabetes, heart disease, hypertension, asthma, osteoporosis, lung disease. She can no longer walk and a small tube delivering oxygen to her lungs that her body can’t provide is permanently attached to her nostrils.
“My brain’s still working, but that’s about it,” she says. “The heart is the bit that’s failing the most.”
Faith’s illness was considered so severe that her local authority, Birmingham city council, provided her with overnight carers three nights a week. But several months ago, after a spell in hospital, the Baileys were told that it was being cut back from three nights a week to two.
“It doesn’t sound much,” says Frank, a former milkman, as he sits hand-in-hand with his wife of 40 years. “But it makes a big difference to me. They used to come Monday, Wednesday and Friday, which was all right as, if you have a weekend, one of the granddaughters might stop over. I knew that every couple of nights I’d have a break. I could get some sleep. I don’t sleep when they’re not here because her breathing might go. Some nights you do, some nights you don’t.”
The couple, who have two children and six grandchildren and recently became great-grandparents, are among thousands of Britain’s most vulnerable citizens who have seen their home care cut over the past year.
Already bearing the brunt of welfare changes at a time of financial hardship, with worse to come as local authorities implement this year’s savage cuts, the disabled and the cared-for are facing an uncertain future.
In Birmingham, which has restricted free social care to those who have”critical” needs, elderly and disabled people such as the Baileys are more worried about what’s around the corner than most.
The shift in eligibility, described as “catastrophic and counterproductive” by disability campaigners, is aimed at saving the council £17.5m this year and £52m over the next three years, according to its business plan for 2011. Those affected will include people with conditions such as dementia, Parkinson’s disease and diabetes.
An estimated 4,100 of Birmingham’s council-funded care users have been assessed as having “substantial” but not critical needs, and face losing their care packages altogether. Others face losing some of their home care. The Baileys do not know whether their needs have been assessed as critical or substantial and are unsure if they are among those most at risk.
Restricting eligibility is a controversial move: according to Department of Health guidance, people with substantial needs include those who have suffered abuse or neglect, those unable to carry out the majority of care or domestic routines, and those for whom social support systems and relationships cannot or will not be maintained.
However, in an interim decision that is being closely watched by the caring community, a high court judge ruled last month that Birmingham council’s care-cutting business plan is unlawful. In a judicial review brought by the families of four severely disabled people, Mr Justice Walker found that, in making the plan, council leaders had failed to consider their duty to disabled people.Public authorities have a duty under the Disability Discrimination Act to encourage disabled people to participate in public life and to take steps to meet their disabilities, even when that involves treating them more favourably than others.
One of the four who brought the case, who cannot be named for legal reasons, told journalists she felt it important to take a stand against the council’s decision. She feared it would extinguish the 24-hour care in a home, paid for by the council, provided for her sister-in-law, 65, who has severe learning difficulties, and that her quality of life would fall dramatically as a result.
The judgment, although welcomed by disability campaigners, has created anxiety in some quarters as no one knows what the outcome will be and whether the council will appeal. In a statement issued after the interim decision, Birmingham city council said: “Like all councils, Birmingham faces a huge financial challenge, with adults and communities having to make a share of the savings like all other directorates, and we need to assess the impact of this decision.”
There can be no further assessment of social care needs until Walker delivers his full judgment, expected next week, but the vacuum has created its own problems.
Nearly one in four disabled and older people have experienced cuts to services and increased charges for care, with families “pushed to breaking point”, according to a recent report from a group of charities. In a survey conducted by charities including Carers UK, the Alzheimer’s Society, Macmillan Cancer Support and Scope, more than a fifth of respondents said services had been cut back even though their needs had stayed the same. More than half said they had seen their health suffer, 52% said they were struggling to maintain their independence, and half said increased charges for care meant they could no longer afford essentials such as food and heating. As part of its plans to restrict social care, Birmingham council, a Conservative-Liberal Democrat coalition, said it would “signpost” those no longer eligible towards possible alternative sources of support, such as the voluntary sector.
But in Kingstanding, north Birmingham, home to the Baileys and one of the poorest areas in the city, the voluntary sector aimed at supporting elderly and disabled people is itself struggling to survive. Jackie Dray, a former social worker, has run the support group Elders with Attitude for two years. Aimed at giving carers a break and the cared-for confidence, it has been a lifeline for the Baileys and others like them.
Faith Bailey, who talks with candour about the blackness that threatens to engulf her, says: “I love that group. Otherwise it’s just the four walls. I was scared at first, but Jackie makes you feel wanted. She makes me feel that she cares. I get upset sometimes, I cry. But she tells me to aim for the stars.”
Dray, who is adored by her charges, used to run four groups in Birmingham, but was told in March that her £30,000 council grant was to be cut altogether. She now runs only one group and is looking for alternative funding.
She says: “They are cutting luncheon clubs or groups like mine that could make a difference between somebody remaining in the community or sinking into clinical depression and residential care. For a small amount of money, you could delay the point at which people have to go into hospital. I see a lot of clinical depression in carers and cared-for alike. People are teetering on the brink. There’s a lot of frustration, worry, lack of sleep.”
At Witton Lodge community centre in Kingstanding, at a meeting for carers and charities organised by Jack Dromey, the local Labour MP, one person after another stands up to talk about cuts in funding. Bernie Blackledge, of Alzheimer’s UK, which runs four cafes each used by between 40-50 families, spoke of how cuts in council funding had led her to make good, experienced cafe staff redundant. The council has since found additional funding, she says, but the damage has already been done, the staff gone. “What are wesupposed to do?” she says.
Margaret Binns, of Age Concern Kingstanding, who advises elderly people on benefits and welfare, describes her office as the “last-chance saloon. After us, there’s nothing.” The charity, which also runs two day centres for people with dementia or physical disabilities, has had a 15% reduction in funding.
Pauline Pullen, the chief executive, said: “If we close our services down, where do people go? People with memory loss are very vulnerable and if they live with a carer, it is very stressful to care for them. Day care is vital for both of them.”
Dromey said: “The tragedy about the cuts to care is that the people concerned are invisible. If care packages are cut, if caring organisations go under, the vulnerable go back to their houses and no one ever hears from them again. The true responsibility lies with the government who are inflicting the biggest cuts in local government history and creating nigh-on impossible problems for local government. But councils have to reflect on their responsibilities.”
Whatever the outcome of the high court judgment, it will not be enough to help the Baileys.
Faith says she cried when she was told her night carers were being cut. “Frank’s getting old. I know he’s 80 but in the last few months, I’ve really seen it in him. I don’t like to see him struggling. He says he doesn’t find it hard, but I can see he’s in pain.”
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