9 Who Cares?

Informal carers at home have always provided the default backup for inadequate and often inhuman public service, which in the pre-NHS days of the Poor Law was frankly designed to be more unpleasant than home care (the 19th century workhouse Doctrine of Less Eligibility). People of my age remember when elderly married couples, forced to accept workhouse accommodation segregated by sex, were allowed to visit each other only at fixed times, and had no privacy or personal possessions beyond what could be kept in a bedside locker. A huge majority of people still live independently as long as they can, dreading entry to any institution. Despite a large increase in the elderly population throughout the 20th century, growing institutionalisation is a myth. In 1906, 6% of the population over 65 were living in Poor Law institutions. By 1990, only 5% of an older over-65 population lived in geriatric homes, hospitals and psychiatric units.

Ungrateful children and uncaring relatives and neighbours are also largely mythical. Since some people hate each other, often with good cause, and many are childless, universal voluntary support for aged relatives will never be possible, but there is no good evidence of substantial evasion of responsibility by families , and plenty of evidence that most accept heavy burdens over many years, often with little professional support. Typically, a 1981 community study of 1,066 people over 70 found that 32% needed regular help. Of these more or less dependent people, 11% were in residential accommodation, public or private, 8% were cared for at home by NHS or Local Authority Social Service departments without help from relatives, and 2% were unable to name any main carer. The other 79% were cared for by spouses, relatives, friends or neighbours. Of these main carers, 79% were women, and 19% were themselves over 75, often in poor health. Less than half had had a break from caring for even a few days during the previous year, and those with the heaviest burdens of care were least likely to have had such a respite. Another study of community care of dementia found that of an estimated 80,000 sufferers in Scotland, only 10% got any specialist help and less than 19% even benefited from the home help service. Informal care provided by relatives in Scotland for dementia patients was estimated to save the government about £1.2 bn annually .

These are still the typical contexts within which caseload shifts from long-term hospital to community care must operate, and against which the new Community Care Act should be judged. One year after its introduction, a major survey found that more than one in four people caring for an elderly or disabled relative or friend had not heard of the new community care system, almost three in four said the people they cared for had not yet had their needs assessed, and less than one in seven thought community care had brought any improvement . In practice, the Act has in large part shifted the costs of terminal care in old age from the tax-funded NHS to personal savings of the elderly themselves. As the only major asset possessed by most old people is their home, John Major’s proclaimed vision of “wealth cascading through the generations” seems more likely to be realised as wealth cascading into the new homes-for-the-aged industry, from people who paid a lifetime of taxes for the NHS.


The only plausible excuse for not caring is curing. Suitably presented as affordable only if families pay for their own continuing care outside the NHS, exciting advances in cure might persuade enough voters to bargain away the rights of all citizens to care almost all of them will one day need, in return for immediate access to cures which most will never need. Just such advances are now on offer.

Quick-fix, mass-produced episodic repairs are now the most rapidly growing part of medical care. Obvious examples are many forms of day surgery, endoscopic “keyhole” surgery, prosthetic replacements (for example, plastic hip joints), organ transplants, and developments in medical treatment that replace common surgical procedures (for example, H2 antagonists replacing partial gastrectomy for duodenal ulcer). Though some of these are already familiar, the scale of imminent change is still not generally understood.

Cholecystectomy (removal of the gall bladder, usually for gall stones) is a common and typical example of these changes. In the 1950s this operation normally required about two weeks in hospital and another four weeks of convalescence at home. Because of better surgery resulting in less tissue damage, and changed attitudes to early mobilisation, by 1985 this fell to 9.9 days. Endoscopic surgery now promises to reduce this even further, with more than half of all patients leaving hospital within 24 hours and the rest within three days . This is a huge increase in productivity. It should release resources for other purposes, and is an obvious argument for the industrial model. Though this procedure only began in France in 1988, by 1992 60% of UK cholecystectomies were performed endoscopically , and the first robotic cholecystectomy has now been reported from Canada.

Already by 1987, more than half of all surgery in the USA was being done without an overnight stay in hospital, compared with about 20% in Europe . Experts predict that within two years 95% of all elective abdominal surgery in the USA will be performed endoscopically, and that in the UK by the year 2000, open surgery will be as unusual for all standard elective operations as endoscopic surgery seems today .

Hospital beds per 1,000 population have been falling almost since the beginning of the NHS, because of improved health and declining chronic disease, and because of gains in efficiency through integrated planning. The fall accelerated throughout the Thatcher and post-Thatcher years, reaching a total of 120,000 closed NHS hospital beds in the period 1981-93, 34% of the 1981 total . Before deciding that we are about to face a large surplus of hospital beds, replacing the chronic shortage all family doctors have experienced as far back as anyone can remember, we should consider some less obvious effects of facilitating mass-produced surgery on industrial lines. Health economists agree that apart from demographic change, the two main determinants of growth in health care costs are the rate of health care inflation (the difference between rates of increase for health care prices and all prices) and the rate of growth of medical interventions per person.

In 1987, the first of these rates was 220% higher in the USA than in the UK, and the second was 21% higher. Much of the difference in health care inflation can be attributed to rapid development of endoscopic surgery in the USA. Though endoscopic surgery reduces labour and hotel costs, it also entails huge investments in technology and training. With operative mortality for open cholecystectomy already reduced to 0.17% at all ages in the best centres there is little scope for further improvement in safety. The only substantial gains for patients will be less discomfort and shorter hospital stay. These are important, but few patients would accept these advantages at the known cost of losing access to other less technical but more supportive parts of traditional care, which most are sure to need if they achieve a full lifespan. Though surgical risks are likely eventually to fall with endoscopic surgery, this has yet to be demonstrated for routine work. In New York State, since laparoscopic cholecystectomy was introduced in 1988, the complication rate for endoscopic surgery was fifteen times higher than for open surgery. Later studies have shown better results, as surgeons become more proficient in the new techniques, but this has a high investment cost in further training, and could entail other costs through loss of older, more flexible skills in open surgery. As late as 1993, review of evidence on endoscopic cholecystectomy had to conclude that it cost a lot more and had as yet been applied to a younger cohort of patients than open surgery, hardly a secure base for bold future planning.

More worrying is evidence from the same study that after endoscopic surgery was introduced, the number of cholecystectomy operations in New York State rose by 21%. High capital investment in equipment and training requires intensive use to secure an economic return, creating perverse incentives to overuse technical procedures. As we saw in Table 2, fee-paid care systems already encourage high rates for all elective surgery, with cholecystectomy rates 2.6 times higher in the USA than they are in the UK, though prevalence of gallstones is lower in USA . With the NHS now managed chiefly to streamline output of technical interventions rather than improve less readily measurable all-round care, we are likely to shift toward the same irrational path.

Though endoscopic cholecystectomy may allow gallstones to be removed more efficiently, it ignores and diverts attention from three more fundamental questions: when do gallstones really need to be removed, why do they occur, and can they be prevented? By the end of their lives, roughly 12% of men and 24% of women in the general population have gallstones, but over a period of 15 years following detection, only about 18% of these stones get into the bile duct, caused jaundice, severe pain, and require operation . On average, people with gallstones live as long as people without them. Once into the bile duct, gallstones become a major and readily treatable cause of severe pain, illness and death, but cholecystectomy as a preventive measure, at least as an open operation, gives no net health gain to the patient. A host of other abdominal symptoms attributed in the past to gallstones, and therefore thought to justify cholecystectomy, are just as common in people without gallstones, and are not helped by operation.

Like most other elective surgical procedures, cholecystectomy is very much a matter for professional discretion, with roughly 2.5-fold differences between individual surgeons and between different localities. Britain (before NHS “reform”) seems to be the only country so far studied in which local cholecystectomy rates correlate rationally with local prevalence of gallstones. Whether this rational practice would survive in an era when hospitals compete for customers seems doubtful.