News

Care homes: a system in crisis- 14th January 2009

Simon de Bruxelles- The Times

A faded hand-tinted wedding photograph and a painted porcelain plate are all that remain to remind George of the life he once had. The plate, hanging above his bed in a Cornish nursing home, depicts a farmer silhouetted by the setting sun guiding his plough behind two giant shire horses.

That is how George's son Martin, one of many Times readers who contacted us about care homes, likes to remember his father. George is now in his nineties and lying in a cot motionless, his mouth open to reveal a few remaining teeth - as helpless as a severely disabled child.

“I remember him with thick black hair, very handsome, running the farm virtually single-handed,” says Martin, 59, a former social worker. He has invited us to meet his father because of his concerns about the treatment that he is receiving. Martin is able to make only occasional visits as he lives a seven-hour drive away, which adds to his guilt and anxiety about his dad .

“He was a very capable man; he had to be, looking after the horses, maintaining machinery, caring for the livestock, repairing buildings.”

George is one of more than 440,000 elderly people living in “God's waiting room”. And it is becoming increasingly crowded. This year one person in three among the population will reach 50 and over. By 2051 the over-85s will reach four million, so a nursing home will be the ultimate destination for many more of us.

Charities insist that long-term care must become fairer and that elderly people should not be penalised by saving throughout their lives, only for it to be snatched away in old age. In the spring the Government will publish a Green Paper on long-term care for the elderly, which will look at how to make it more accessible and equitable.

Meanwhile, families and the elderly - many of whom are often suffering from dementia and have to pay for their care, the so-called self-funders - are battling against boredom, crippling fees, overworked staff and dirty rooms. And they have no system of redress - they have become a generation that society has forgotten.

Today, after two strokes, George cannot even hold a child's plastic drinking cup. He is unable to reach the buzzer to summon staff and when he reminds them and they place it in his hand he complains that no one comes when he buzzes.

His room at the home is clean, tidy and bright. But there is nothing to occupy his mind as he cannot see or hear well enough to read or watch the TV and conversation is difficult. His only stimulation comes from family visits, but they can be days apart and upsettingly brief. He shouts and cries as his frustration surfaces, which only adds to the family's feelings of guilt and helplessness and a desire to cut the visit short.

George wakes with a start as visitors arrive. His eyes are a piercing blue but see little. “Is that Martin?” he asks. There are two cuddly toys on his bed and a vase of flowers from the grandchildren on the window sill. Asked if he has eaten, he becomes distressed and replies in a voice that is part-shout, part-sob: “Yes!” Did you like it? “No! No! I didn't like it!”

Martin is one of the few who can hold a conversation with his father. Many of the staff are foreign-born and struggle to understand the elderly, let alone one recovering from a stroke. Once Martin, who is divorced, hoped that his father would be able to leave the home and return to the bungalow that they had shared. But he sees no prospect of that without therapy, which the home seems unable to provide.

Martin says: “There is no stroke chair, no physiotherapy. I brought in his sticks, not because there is any prospect of him walking, but because he asked for them. They represent freedom for him. When I put the handle in his hand he held it. He thinks he is unable to grip but I saw him do it. Why can't someone at the home do that? They just tell him that he can't do things rather than trying to help him do them himself.

“He looks dehydrated to me and should be drinking a lot more than he is, but the staff seem too busy to check his fluid intake. I have tried making a fuss but no one seems bothered and social services won't let me move him.”

George gets regular visits from others in his family, including his daughter, who lives near by, and Margaret, a widow who became a friend ten years ago.

Margaret took me into the home, pointing out the lounge where a group of residents were enjoying a natter and a joke with members of staff. George is paying £775 a week for his care and accommodation. Even that buys him little dignity, says Margaret, a former hairdresser. “His toenails badly need cutting and when you run your hands through his hair it feels lumpy and dirty. He often smells unwashed and although he has a clean shirt on today, it's not his,” she says.

A stroll along the corridor reveals other elderly men and women in the home slumped in their beds. The sound of laughter from the residents' lounge does not reach this far. In this wing the residents breathe, they eat, they exist, but that is about it.

But this is not a hospice. These people are merely old and because that is a condition from which they will never recover, they have been made comfortable and left to wait for death. It could be a long time coming. They have been spared the release of illnesses such as pneumonia, once described as the “old man's friend”, thanks to flu jabs and the antiseptic gel with which every visitor is asked to clean his or her hands. But they are given little or nothing to fill their time. Malcolm Cowley, the American novelist, once wrote: “They tell me that you'll lose your mind when you get older. What they don't say is that you won't miss it very much.” For many people that is not true. The confusion of losing things, of unfamiliar surroundings and unfamiliar faces, of not knowing who or where you are, is immensely distressing. The Government's watchdog, the Commission for Social Care Inspection (CSCI), estimates that 2.5 million older people need some form of care and support. Of those, 850,000 have high levels of need. But councils now restrict care to those with critical or substantial needs, so that more than 280,000 older people in need receive no services or informal care at all.

Dementia most often amounts to critical need, but even then sufferers who own more than £22,250 in property and savings will find that they must finance most of their care themselves.

More than one third of us will suffer from dementia before we die and that figure is proportionately higher in nursing homes. Dementia does not just affect its immediate victims, it is disturbing for other residents forced to share their final years with sufferers. And it places a huge burden on staff who have to look after their most intimate needs. As a result, the cosy traditional view of an old people's home, as a place where merry widows and twinkly eyed old men could exchange glances over a hand of whist, has long gone.

“More people are living long enough to suffer from dementia so it is a growing problem,” says Leon Smith, chief executive of Nightingale, a Jewish charity that runs a large home in South London. “Two thirds of our residents are suffering with dementia at some level. The vast majority of people who move into residential homes these days do so not for social reasons, they do so because they are unable to cope at home.”

He claims that new rules make homes harder to run than before. “We have gone from being a sector with relatively little regulation to a sector where virtually every aspect of our activities is regulated, perhaps over-regulated, from staffing levels to the size of the rooms to the temperature of the water.”

At the same time, care homes have become big business, generating billions of pounds. One carer, who wrote to The Times and worked at a home for more than 30 years, says that her original owner's interest in the welfare of residents and staff was replaced by the need to generate profits once it was sold.

“The original owner believed that it wasn't fair to the residents to mix them with dementia sufferers. Now we have a mix of elderly people in full possession of their faculties and a quarter of the residents who suffer from dementia,” she says.

“Before, the home smelt clean with the odd waft of the old ladies' perfume. Now, through no fault of their own, the dementia residents defecate and urinate as and where their body demands. The new owners find it easy to fill vacant beds with dementia sufferers, so the living standards of all have gone downhill.”

In addition to the guilt felt by children, who find themselves with no choice other than to put elderly parents in a home, there is a widespread fear among self-funders that their treatment is dependent on good behaviour and not complaining. Almost half of the 440,000 care-home residents in Britain are self-funders and have nowhere to turn when disputes arise with care-home managers. The Government has promised a tougher inspections regime and new complaints system, when the CSCI is replaced in April by a new body called the Care Quality Commission, which will have an enhanced range of responsibilities.

Vivian's 94-year-old mother Dorothy was given notice to quit after she complained about the executive's dog, which kept leaping up at her. Dorothy is frail, has restricted vision and arthritic limbs and she is unable to dress or clean herself. She has been paying around £4,500 a month for care at the home, but her daughter was not satisfied even before the arrival of the dog.

Vivian says: “Service was not brilliant, cleaning and washing being undertaken only once a week, but we covered these shortcomings by performing services ourselves or by asking staff to attend where the hygiene aspects had become unacceptable.”

However, the real problems began only when the executive adopted a dog. “The dog was very boisterous and seemed to have free run of the home. It scavenged, drank from cups in the bistro, ran into people and seemed out of control. It kept barging my mother's arthritic hand and she became terrified of it. My daughter witnessed it being called and it ran past her while she was carrying hot cups of coffee,” Vivian says.

“Staff and residents seemed concerned, so I went to have a word with the executive. I quickly found out that the dog was ‘not negotiable'. My mother's problem was dismissed as nonsense and I was subjected to an aggressive verbal attack.”

Later her mother fell and became trapped between furniture in her room. She spent 18 minutes in agony despite pressing the emergency buzzer on her pendant. When Vivian's brother wrote a letter of complaint, the response was a notice for her mother to leave the home.

“It seems incredible that a frail, blind and entirely innocent old lady can be treated in this way simply because relatives have been concerned at some endangering aspects of her treatment in care,” says Vivian.

Unable to find anywhere to take her mother at such short notice, Vivian was then banned from the home for her “divisive” action in reporting the matter to the Social Service Inspectorate and the local council. Eventually, after an appeal through her solicitor, the home's owners relented and allowed her mother to stay until alternative accommodation could be arranged.

The standard of care has since deteriorated, Vivian claims, and she fears that her mother is being punished for her family's complaints. “My mother is now often to be found in a filthy room in dirty clothes without her bed made for half the day and with old plates of food on her table. As she is virtually blind and can walk only a very small distance to the loo on a wheel frame, there is little she can do about this mess herself.”

Even well-run homes have difficulty providing more than basic care. Alison's father Edward has been in a nursing home since suffering a stroke, but instead of helping him to get better, staff have little time to do more than ensure that he is fed and given something to drink.

She says: “Nursing homes are not set up to help to improve the patients' lives. We mistakenly thought the home would provide the physio, a wheelchair for someone who is a tall man, mental stimulation and trips to the toilet, despite my father being ‘hit and miss.

“Instead, more than 18 months later, my father is in pads, on a restrictive puréed diet and we buy-in the services of a physio and a reflexologist. We have no contact with social services. So instead of continuing to improve he has levelled out and in some ways degenerated.

“I take my dad out several times a week and he comes to life then. Instead of being ordered to sit still, eat quickly, go to bed, sit up, he is consulted, he is considered and he is cherished. His personality reasserts itself.

“The residents are left in a large room with the TV just beyond their sight. There are no communal papers to read. The food is poor and mass-produced and often it is oven chips for tea with a slice of spam or tinned tomatoes. And always cream cake for pudding. Try that night after night.”

Charities such as Counsel and Care insist that older people are “baffled by the care system” and that much of their frustration and confusion would be removed if the system was simplified, with nationally defined entitlements, which would ensure that everyone who has a care need would be able to acess the support he or she lacks, wherever the person lives.

But the elderly have little pulling power with politicians, so for years these pleas have fallen on deaf ears. Now the Government is promising that a new system will mean at least that everyone will be entitled to an assessment of need, proper advice and information about residential care options and legal protection for appeals, even if they have to pay for the care themselves. That way no council will be allowed to abandon those living in its region as soon as they find out that their savings are above the minimum threshold, as local authorities frequently do at the moment.

However, it will be a steep mountain to climb. Charities describe the care system as being in “crisis” and one that will be dealt with head on only when society accepts that the needs of the elderly are as important as those of newborn or disabled children.

All the names have been changed.