Dereliction of duty in an ageist society

The Royal Commission on Long Term Care submitted its report to parliament over a year ago.¹ The recommendations have been widely supported, perhaps most notably by the parliamentary health select committee, which declared that “failure to act would be dereliction of duty” and again recently by the presidents of three royal colleges and of the British Geriatrics Society.² Yet the government has still to respond to the principal majority recommendation that “the costs of care for those individuals who need it should be split between living costs, housing costs, and personal care. Personal care should be available after an assessment, according to need and paid for from general taxation: the rest should be subject to a co-payment according to means.”

The royal commission was set up to examine the options for a sustainable system of funding long term care in the face of a widespread perception, particularly among older people, that the current system is unjust. With the apparently laudable aim of combining improved cost effectiveness with less care in institutions and more in the community, the previous government inaugurated what turned out to be a massive privatisation of long term care for older people. The number of places in private nursing homes mushroomed while the number of NHS long stay beds plummeted. The health care of frail older people was redefined as social care, taken outside the health service, and subjected to means tested charges.³ The frailest older people were systematically distanced from specialist medical and nursing care. A whole generation of older people saw this as a betrayal of trust, and the consequent sense of bewilderment and anger was expressed in hundreds of letters received by the royal commission.

The common diseases of frail older people, which include strokes, heart failure, arthritis, and dementia, are difficult to treat but inexorably undermine the person's ability to care for his or her own body. This predicament erodes dignity, and dignity is part of health. The provision of intimate personal care with skill and sensitivity can restore dignity and independence; it is the most important dimension of health care for those rendered frail and debilitated by chronic illness. Yet this type of care has been devalued, taken away from nurses, and redefined as social care which can be delivered by those who are poorly trained and even more poorly paid.

What possible justification can there be for society to treat quite differently those who suffer the random catastrophic misfortunes of cancer and Alzheimer's disease? Is there an understandable difference between these two diseases that would justify the care of one remaining entirely within the NHS while the care of the other is systematically excluded? The majority on the royal commission could find no moral justification for the continuation of this exclusion and recommended that intimate personal care, the principal healthcare need of the frail elderly, should be provided free after a full assessment of need. The commission was very careful not to limit its recommendation to free nursing care as the government has recently hinted that it might be considering.⁴ The commission recognised that this would only increase the perverse incentive to define the intimate personal care of older people as social care not requiring nursing expertise, and risk further distancing older people from the skilled care that they need.

Men who live to be over 65 have a one in five risk of needing residential care, women a one in three risk. These are large unpredictable risks which herald social, emotional, and, currently, financial devastation. If a married couple were to save against the risks of long term care they would need £85 000 to be sure of meeting the average cost of a residential home for each of the couple for three years, the average length of stay. These are catastrophic costs. The royal commission thought that such risks, incurred randomly and through no fault of the elderly person, are best and most cost effectively met by some form of universal shared approach. The formal pooling of contingent risks is a powerful force for social justice and cohesion and was the founding principle of the National Health Service.⁵

The principal majority recommendation of the royal commission seeks to reassert the legitimate healthcare needs of frail older people and to include these within the NHS. Implementation of the recommendation would dismantle the so called Berlin wall between health and social care—a divide that is used to castigate frontline workers on both sides but which was generated for reasons of political expediency. It would enable access to specialist medical and nursing care for those older people most in need of such care; revalue the intimate physical care of frail people; help more people to stay in their own homes; and rebuild the trust of older people. The costs would be substantial, but they are affordable and they would also go some way in helping the prime minister fulfil his wavering promise of meeting European averages for health expenditure. The royal commission has offered the government an unprecedented opportunity to arrest the ageist and insidious processes that see older people bearing the brunt of healthcare rationing in our society.⁶ A response is overdue.