Long term care for older people

Long term care is a reality for thousands of frail older people, a source of great anxiety for many more and, across the developed world, a political hot potato that shows no sign of cooling. The heat is fuelled by two factors. Firstly, current government policy in many countries is widely perceived to be unjust, with older people themselves paying an ever greater proportion of the costs of health care. Secondly, the rising percentage of older people in the population, while fuelling doom laden economic projections, is inexorably increasing the power of the older vote, producing democratic pressure for change that is gradually intensifying. This week's changes to the funding of long term care in Scotland will further intensify this pressure (p 1542).

Very shortly after winning power in May 1997, the New Labour government in the United Kingdom sought to deal with the problem by appointing a royal commission to examine the options and to recommend how the costs of care should be apportioned between public funds and individuals.¹ In June 2000, after delaying a decision for more than a year, the government refused to implement the commission's most important recommendation, which had been explicitly designed to put the whole system of long term care on a foundation that was fair, equitable, and logical.²

This recommendation was that the costs of long term care should be split between living costs, housing costs, and personal care. Personal care should be available after assessment, according to need and paid for from general taxation—the rest should be subject to copayment according to means.

The heat was back on and it has got even hotter with the decision of the Scottish executive to implement the commission's recommendation from July 2002.³ Influential organisations, including the Institute for Public Policy Research and the King's Fund, have called for the recommendation to be implemented across the United Kingdom and the issue of free personal care for older people secured by far the largest number of votes in the BBC's NHS day poll of health service priorities in February.^4–6 This surprised most commentators and should have caused consternation to the Westminster government.

Ageism

Many older people suffer from combinations of different serious diseases and the treatment of each condition is complicated by the presence of others. Many diseases that affect older people cannot be solved by acute care but require chronic care extending over months and years. For all but the most sick people this care can be delivered in a domestic environment, and most older people wish to remain in their own homes as long as possible. So far so good, but by the time that these older people have reached home or been placed in a care home, they discover that the bulk of their needs are no longer for health care but for social care. The NHS does not cover social care, and the patient must pay for it.

Here lies the solid core of ageism within the English healthcare system, which the pious protestations of the National Service Framework for older people ignore completely.⁷ Social care is a deeply unpleasant phrase that demeans older people by relocating the source and solution of their pain and suffering away from disease and illness. Social care puts a barrier between people who suffer the greatest and most complicated burden of illness and the specialist healthcare professionals that they need.

Perhaps even worse, the term implies that the problem should be solvable by social support from families. Both patients and carers are made to feel guilty. Politicians fear the possibility that the costs of meeting all the healthcare needs of older people will become unaffordable, but the present state of affairs amounts to a covert tax on chronic illness in old age. Experience in Denmark suggests not only that a fully funded system is much more cohesive and efficient but also that costs are better contained.⁸

Quality of care

In England, the demarcation between nursing (health) and personal (social) care, with one funded by the state and the other subject to means tested charges, is ”unworkable, unfair and unjust.”⁹ The eligibility for free care is, for the first time, based not on the patient's needs but on the job description of a particular health professional. Nurses have become directly responsible for rationing care.

The royal commission considered intimate personal care to be nursing as it should be conceived in relation to the healthcare needs of frail older people. Most do not need high tech care. They need health care that is mediated by touch and delivered by professionals whose skilled eyes and hands can detect deterioration, who can intervene early, and who can identify opportunities for improvement and rehabilitation.¹⁰

Trying to separate care into nursing and personal components is futile and destructive. At present, much of this difficult and demanding care¹¹ is delivered by unskilled care assistants who are poorly trained, poorly paid, and inadequately supported.¹² Staff turnover is high, and standards of care are too often poor. If intimate personal care were funded appropriately as the health care it undoubtedly is, care assistants working in patients' homes could work alongside district nurses in unified and supportive teams. The privatisation of the long term care of people who are too ill to remain at home has led to provision that is hugely fragmented and that is necessitating a vast industry of regulation and inspection.¹³ At present, almost everyone who works with frail older people is aware that standards of care could and should be better. We live with an increasing sense of failure that is deeply destructive of morale.

Frail older people and all those who care for them deserve better. The full funding of long term care as an integral part of a universal health service is long overdue.

See also News p 1542