The Moral State We’re In

Grey Power

From the resentment caused by the government’s reaction to the Royal Commission on Long Term Care, after years of surprising political inactivity amongst older people, there has grown the beginnings of a grey-power movement. It does not yet have real political teeth, but they will come. Though the organisation of the grey vote is not in the league of similar movements in the USA, the voting figures, which show that older people vote more than younger people, make governments nervous. If older people voted more on self interest, then governments would be in trouble.

And there are signs that older people, who have not hitherto voted on sectional interests, are beginning to change. They see themselves as having to bear the risk of the costs of long-term care, and they cannot see how they can trust a government that has, in their view, reneged on a promise to remove the inequities of the present system. Worse than that, they are beginning to ask whether they can trust any government to treat them fairly. The 75p increase in the old age pension in 2000 met with a furious response. As Gary Younge pointed out, in a hard hitting article in The Guardian shortly after that famous increase, the government’s determination to keep the pension increase index linked ‘was more than a mathematical calculation. There was political arithmetic there too.’* The assumption, as Younge makes clear, was that old people would complain but that they would not fight back.

But the government got it wrong. Older people did fight back. The National Pensioners’ Convention is growing. On the question of council tax, some older people have simply refused to pay. In March 2002, one old lady, 102-year-old Rose Cottle, furious at the prospective closure of her care home where she had lived happily for many years, took a petition to Downing Street and caused some embarrassment-but not enough. By the next week things had moved on, and she was forgotten. Some have gone on hunger strike, and others have been moved-against their will-and have died shortly afterwards. But grey power is coming. As The Economist made clear recently, the overall fall in voter turnout is largely a change in the voting patterns of the young.† The old vote as they always have done. So pensioners, who represent 24 per cent of the voting-age population, accounted for 35 per cent of votes at the last election. At the next one, the figure is more likely to be 40 per cent. So grey power will soon begin to bite.*

Long-term care has been one source of anger amongst older people. Another issue that has caused resentment is abuse.

Abuse

A survey conducted by Age Concern as far back as 1991 estimated that between 5 and 9 per cent of people aged over 65 had been abused-more than half a million people. The incidence of abuse is clearly likely to increase as the population ages: the greater the level of dependency, the greater the risk of abuse. In 2004 Jennie Potter, a district nurse who is a national officer of the Community and District Nursing Association, compiled a report on abuse of older people† that suggested the problem was widespread. The CDNA surveyed just over seven hundred nurses, and found that a staggering 88 per cent of them had encountered elder abuse at work, 12 per cent of them daily, weekly, or monthly. The most common form of abuse was verbal (67 per cent), followed by emotional (51 per cent), physical (49 per cent), financial (34 per cent), and sexual (8 per cent). The most likely perpetrators were partners (45 per cent), followed by sons (32 per cent), daughters or other family members (29 per cent), paid carers (26 per cent), nurses (5 per cent), or other persons (4 per cent).‡

This suggests a huge incidence of abuse, one that until recently we did not take seriously. Though dramatic cases often make the local press, very few are reported in the national papers. The appalling case of 78-year-old Margaret Panting, for instance, who died after receiving huge physical abuse that included cigarette burns and cuts from razor blades is little known. Whilst there is a major inquiry over the death of Victoria Climbié, and over every other child who dies in appalling circumstances, abuse of older people, which may also lead to death, simply does not carry the same weight, or tug at the heart strings as much. Yet there is equally a serious problem here, and some older people, as well as their carers and nurses, are now speaking up about it in a brave and forthright way. For it is not a simple issue, which, to some extent, is why older people have been loathe to raise it. Though there is some violence against older people on the wards of hospitals, most abuse is not the stuff of headlines. Much of it is score settling-often by a wife who feels she has had a rough time at the hands of her husband-when one partner becomes physically dependent on another. This may be no more than rough handling, verbal abuse, and a general lack of care and kindness. But it can still make the last years, months, or weeks of a person’s life intolerable. Then there are some paid carers who take advantage of their position to steal from their employers. I well remember my own mother’s fear of us confronting one of her early carers (the majority were completely wonderful, with this one exception) who was stealing from her and forging stolen cheques. That fear, that loss of the normal ability to confront an issue, makes the abuse of older people truly dreadful.

Even more complicated is the amount of abuse received from partners and children, normally due to the considerable levels of stress experienced from trying to care for someone as well as carrying on with the normal things of life. Action on Elder Abuse, a charity set up in 1993, has been campaigning for urgent official action after demonstrating in a variety of ways, including an undercover TV programme in late 2003,* the seriousness of the situation. An analysis of the calls the charity received over a two-year period from 1997 to 1999 demonstrated that two-thirds of the calls came from older people themselves or their relatives. Most of the calls concerned abuse in people’s own homes, though a quarter were about abuse in nursing homes, residential care homes, and hospitals.* There were cases of near starvation in care homes, of helpless older people left to die because their buzzers had been placed out of reach, nurses sleeping through night shifts and dressing patients in incontinence pads so they would not be disturbed, and the attempted suicide of several people in nursing homes that were due to close. Some of the statistics are particularly concerning. For instance, abuse appears to increase with age, and therefore with vulnerability. Given that vulnerability makes it harder to complain, this is particularly terrifying. Three times as many calls to Action on Elder Abuse concern abuse of women: women live longer and are therefore likely to be amongst the very old.†

There is the additional likelihood that cases of abuse will rise as the population grows older and the number of people with Alzheimer’s disease increases. Though we may not be ill for any longer than previous generations, the nature of our illnesses is changing. The increase of Alzheimer’s disease has huge implications for the kind of care we will need, and the amount of patience that will be required to deal with often very difficult, irrational, older people. Ironically, it will be even harder to detect abuse, for often the complainers will not be believed, even if they are telling the truth, simply because of the nature of the disease. Caring for those with dementia requires such a degree of patience and skill, and can lead to such frustration, that the chances of abuse increase and the levels of care needed will be much greater-for instance, more and more lengthy home visits will be required. Present provision is patchy at best, and often simply unsatisfactory, as Tony Robinson reported in his story in the Daily Mail about the care his parents received:* ‘The NHS still fails to recognize the special needs of people with dementia, and won’t pay for their long term care…If we want a dignified old age for ourselves and our parents, it’s up to us to do something about it.’ Meanwhile, research suggests that some 22,000 old people are being given drugs to sedate them, to make it easier for care staff to manage them, according to Paul Burstow, the Liberal Democrat spokesman.† If anything, this figure seems on the low side.

Yet on this whole question of abuse of older people there are detectable signs of change-most notably in the fact that considerable numbers of older people have raised the issue themselves. They have told district nurses, social workers and others, including friends, that they are being abused-despite the difficulties involved for those who may not have access to a telephone and the fact that those committing abuse may be close family members, as well as professional carers. Action on Elder Abuse suggests that there is a category of carers who hop from one agency to another as soon as suspicions about their abusive behaviour become known, with the result that they are able to move to another care home, to another group of vulnerable older people, and perpetrate their abuse all over again. To compound the problem it will be a long time before the National Care Standards Commission will be able to register all care workers. Action on Elder Abuse:‡ argues that it may take anything between ten and eighteen years before care assistants and home helps are registered by the General Social Care Council; yet, as Gary FitzGerald, Chief Executive of Action on Elder Abuse, argues: ‘Less than three per cent of the identified abusers are social workers, whilst 36 per cent are home helps. There is clear evidence that we need to look at the other end of the scale.’ Despite this, the General Social Care Council is starting with the registration of social workers. Even when it reaches all care workers, registration will not give us all the answers because there will always be staff shortages and employers may well believe-understandably-that it is better to have some staff, even if a bit dubious, than none. Whilst the government wants half of all care home staff to have achieved NVQ level 2 by 2005, it must be questionable whether care home owners will pursue that goal as hard as they might, given how hard it is to get staff at all. It must be equally in doubt whether individuals who might have thought about becoming care staff will bother to go all out to be recognized as capable and reliable in these circumstances, given the numbers of hoops they will now have to go through.

Only the worst cases of abuse make the news, such as the attack in 2000 on Lillian Mackenzie, who was kicked and beaten by two teenage girls who were befriended by her. Jean Lyons and her sister Kelly had run errands for Mrs Mackenzie, who lived in the same block on an estate in Manor House, north London. Wearing balaclavas, they kicked her, beat her with an iron bar, and robbed her of about £800, as well as stealing her handbag and some documents. They then visited friends and bragged about what they had done. Yet Kelly was able to tell the jury that Mrs Mackenzie had been ‘like a nan’ to her and had taken her for meals at a local cafe. This was, as one reporter put it, ‘as mean and despicable offence as can be imagined’.*

Yet if one scans the local papers, there are hundreds upon hundreds of cases. In June 2003, the Yorkshire papers took serious issue with a nurse who took away an older person’s buzzer because he was using it too much. He had to be fed by tube, as his stroke had left him unable to speak and partially paralysed. Yet he was perceived as being too much of a nuisance. As a result, he was overfed by five times the correct amount, could not let staff know things had gone wrong, and died unnecessarily.* Another nurse in Yorkshire strapped up her patients in incontinence pads so she could sleep the night shift through, resulting in blisters, sores, and burns.† In Leicester a care worker was given a caution for slapping a frail older person. Again in Yorkshire, a nurse was accused of running a military style ‘boot camp’ in a care home for mentally ill older people: she had sworn at a 90-year-old wheelchair-bound man, as well as instructing care assistants not to lift up a 78-year-old man with dementia after he had fallen on the floor with his trousers round his ankles.‡ A woman of 69, a psychiatric patient, had her bed moved away from an alarm button because she was constantly pressing it. Mrs Wootton had a long history of mental health problems, and had set herself on fire whilst in hospital. But her death was the result falling from her bed whilst trying to reach the buzzer. She sustained a broken hip and, later, bronchial pneumonia.§ And these examples are quite apart from the murder investigations and the major cases of neglect.

The truth is that we know about this in our hearts. We see it ourselves with our own eyes. Look at the fear, the terror, in the eyes of some older people in hospital wards, in care homes, in nursing homes. Listen to what they say in code. Listen to how their carers speak about them. It is not universal, by any means, but it is common. And one of the terrifying things is that we have known about it, subliminally perhaps, for many years.

The redoubtable campaigner Erin Pizzey, famous for her action on domestic violence, has now taken up the cudgels. She argues that abuse of the elderly has a terrible habit of being kept quiet: ‘It is a bit like domestic violence amongst the middle classes–no one ever talked about it, although people knew it was going on…If baby-boomers don’t start kicking ass now about elder abuse, this will be their future–and they are a generation who are used to their freedoms. Tackling elder abuse requires a revolution–a grey revolution.’*

We know human beings are often very abusive to people who are in their care. We understand that there is a risk, but our way of dealing with it is to add layer upon layer of regulation and inspection rather than to encourage the opening up of institutions such as care homes and nursing homes so that ordinary people can come and go frequently, as part of daily life. Whether those in care are children, older people, people with enduring mental illness or learning disabilities, or even prisoners, cruelty can often well up from the depths of the human personality. We know it well enough from all the inquiries into abuse in large institutions. Abuse occurs wherever vulnerability exists. If we have strong legislation to protect the vulnerability of animals, why not for older people also? But legislation needs to go hand in hand with opening up institutions, for openness is far more likely to breed an atmosphere of trust than any system of regulation and inspection.

Fear of abuse has been further exacerbated by the chaos surrounding care and nursing homes, particularly, though not exclusively, in the south and west of England. With the rise in property prices nursing home and care home owners find it difficult to maintain standards and get staff. One by one, homes have been closing. The result is that older people who moved–often unwillingly–into nursing and residential care find themselves with nowhere to go when they are at their frailest and most desperate. Though this is not abuse as such, it is a form of mistreatment that beggars belief. Many professionals suspect that many old people attempt suicide because their future in such circumstances is so bleak.

Abuse exists in the NHS sector as well, as the CHI (Commission for Health Improvement) report into conditions in Rowan Ward of the Manchester Mental Health and Social Care Trust made clear. There was abuse, an inward-looking culture, low staffing levels, high use of agency staff, poor supervision and appalling management.* The report, which came after complaints of abuse of older patients by staff, found amongst other things: a ward left physically isolated when other services were moved to more modern premises elsewhere; poor reporting and clinical governance procedures that failed to pick up early warnings of abuse; regimented care; ‘Patients’ clothing was changed and their hygiene needs addressed according to a schedule rather than when the need arose.’ They also found sickness rates of 9.8 per cent during 2002 among nursing staff; widespread use of mixed sex wards in the Trust’s older-age mental health services; ‘rudimentary’ performance management of staff; an aimless service; and a lack of management attention to quality of care caused by transition to care trust status.

So can the NHS do better? Its record in this area is not all that reassuring. An inquiry by the Health Advisory Service in 2000† demonstrated that older people were less satisfied with the care they received than younger people-which is surprising given that older people complain less than younger people. They experienced unacceptably long delays in admission, problems with feeding and with the physical environment, staff shortages, privacy and dignity, communication with staff, and, most profoundly, with staff attitudes towards older people. The recommendations were lengthy, but the most significant was that everyone-patients, relatives, and staff-has to take on responsibility for challenging negative attitudes about old age, about prospects for recovery, and about worth. So if the NHS has problems of this sort, will voluntary organizations take on the provision of care homes? Many already do, particularly those that are religiously or ethnically based. The mess in care home provision has come about as a result of inadequate planning and a cross-party agreement to shift the burden of care to the private sector. But the position is untenable. The risks of abuse would not be not hugely improved, and feelings of insecurity would remain.

An inquiry into the care market in London currently being carried out by the King’s Fund shows that there are still concerns about a number of familiar issues. For example, there is a very limited choice of care and support for older people. While there is no evidence of insufficient care home places for older Londoners, these may not always be where people want them; and there certainly is a shortage of services for older people with mental health problems such as dementia. The King’s Fund has also found that throughout London there are difficulties in recruiting and retaining nurses, social workers, therapists, and care workers. Older people’s views of services have been shown to be varied; some are very appreciative of a wide range of services, but there are widespread concerns about the quality of home care and residential care services. All of this is compounded by financial pressures, for in spite of increased government spending councils have to juggle the needs of older people with other priorities.

Though inspection of care homes has led to the uncovering of some abuse, inspection in itself is not enough: in fact the burden of inspection and regulation on an already precarious nursing and care home sector may make even more owners give up. Part of the answer lies in allowing ordinary people to visit older people in nursing or care homes, as part of a daily or weekly routine. However, the Better Regulation Task Force, a government body, warned that vital care services were being withdrawn precisely because of inflexible ‘no touch’ rules stopping volunteers taking older and disabled people to the bathroom or feeding them.* Indeed, volunteers, often in their sixties or seventies themselves, the so-called Third Agers, are now often subjected to the same training requirements for a few hours of help as professional care workers. The report was the work of a committee chaired by Sukhvinder Stubbs, who argued that small local agencies who work with volunteers are being affected by ‘silly regulation, bonkers regulation’. But the issue is really about the level of risk service users want to accept-for instance, the extent to which they want to be able to choose the temperature of their own bath water.

In the present climate we are automatically suspicious of people wanting to visit nursing homes and care homes on a casual, uninvited basis. Who are they? Are they would-be abusers? Are they after the older people’s money? Yet this attitude of mistrust, and the now ubiquitous fear of risk, may well be leading to a greater degree of isolation for residents. The more we close off institutions, the less we know what is going on within them, the easier it is for abuse to take place and for the residents to feel isolated, hopeless, and forgotten. Some system whereby lonely older people get visited on a regular basis needs to be taken up by a whole variety of organizations, from schools and colleges to churches and mosques, from Townswomen’s Guilds to Working Men’s Clubs. This sense of isolation, and the fear that taking an interest in older people will be seen as perverse, must stop.

A few schemes exist, such as the excellent British Red Cross’s Home from Hospital scheme, which has some 55 initiatives operating nationwide, but many more are needed. The Red Cross model gets round the issue of strangers coming in to people’s homes because the volunteers are trained and supported and the service is paid for by local social service departments. This model of supported, trained volunteers who do it because they love it, supported by professional volunteer co-ordinators and a serious, respected organization like the Red Cross, gives older people the confidence to use the service, gives volunteers the feeling that they will not be rejected by the people they visit, since the Red Cross badge will be seen as a mark of quality and safety, and makes the system run as a truly voluntary service with rigorous quality and safety checks.* It is this kind of service that we need to see nationwide, with an expectation that most of us, if not in need of such support ourselves, should be taking part in providing it under the auspices of a respected, sensible organization. Such a model of practical help combined with care and companionship would make all the difference to the isolation and fear felt by many older people.