the cost of living: kidney dialysis, rationing and health economics in britain, 1965–1996

The cost of living: kidney dialysis, rationing and healtheconomics in Britain, 1965±1996

Jennifer Stanton*

London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK

Abstract

How important is research in shaping policy when a new life-saving medical technology becomes available, buthappens to be very expensive? Taking the case of kidney dialysis, this paper argues that the emerging discipline of

health economics had little in¯uence relative to national di�erences in health service organization and cultures ofexpectation of provision. Paradoxically, the most e�ective covert rationing was achieved under the British NHSwhich ostensibly provides free care for all, while the uncentralised market system in the US gave way, on this issue,to almost universal state-subsidised provision. Under the British system, the most cost-e�ective options for renal

care tended to ¯ourish, but some patients were turned away. Physicians have been held responsible for complyingwith covert rationing: this paper suggests that early gearing towards socially-useful survival ®ltered back to selectionat primary level, possibly continuing long after specialists wished to expand. Public outcry, though muted, reached

parliament and caused minor shifts in policy; the main aim of the voluntary pressure campaign, to release moreorgans for transplant through `opt-out', remained unrealised in the UK. Yet dialysis was targetted for expansion inthe 1980s just at the point when health economists were presenting evidence for its low cost-e�ectiveness compared

with other expensive interventions. According to the main strand of argument in this paper, comparisons with othercountries and between regions were most in¯uential in breaking the hold of covert rationing: policy making byembarrassment. However, in the 1990s, there are both theoretical discussions of explicit rationing, and openintiatives afoot to target dialysis for rationing. # 1999 Elsevier Science Ltd. All rights reserved.

Keywords: Rationing; Kidney dialysis; Health economics; QALYs; Expensive technologies; NHS; UK

Introduction

In this current age of evidence-based medicine, with

emphasis on e�ciency as well as e�ectiveness, health

economists have secured a role in the theoretical order-

ing of priorities. In Britain, health economics as a dis-

cipline has grown from a tiny stem in the early 1970s

to a healthy profession, blossoming with publications,

academic posts and advisory roles. One substantial

branch of health economics has developed a range of

theoretical tools for measuring the value of di�erent

medical interventions; an example, the Quality

Adjusted Life Year (QALY), will appear later in this

paper. Another branch has evolved the theory of the

`internal market' which from 1991 was applied in prac-

tice in Britain under a Conservative government. But,

even though there has recently been open discussion of

rationing in the British National Health Service

(NHS), these inputs from health economics have not

led to stricter rationing of kidney dialysis, one of the

Social Science & Medicine 49 (1999) 1169±1182

0277-9536/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved.

PII: S0277-9536(99 )00158-6

www.elsevier.com/locate/socscimed

* Tel.: +44-171-927-2317; fax: +44-171-637-3238.

E-mail address: [email protected] (J. Stanton)

most notoriously expensive health technologies, which

rated poorly in terms of prolonged high quality life per

pound spent. Instead, in the 1980s, while health econ-

omics was re®ning its theoretical tools to make ration-

ing more logical, the government was encouraging

wider access to dialysis in Britain. This gap Ð the lack

of policy impact of the highly relevant research disci-

pline of health economics in the area of dialysis ration-

ing Ð was the starting point for this paper.

Although health rationing did not catch media

attention in the run-up to the 1997 general election in

Britain, it seemed set to be an issue-in-waiting. It has

become important behind the scenes to central policy

makers: and, where rationing is discussed, dialysis

tends to be on the agenda. Dialysis featured promi-

nently in the ®rst wave of mainly American literature

on rationing (Calabresi and Bobbitt, 1978; Mechanic,

1979; Aaron and Schwartz, 1984), and features in

more recent British work which distinguishes between

`rationing' and `priority setting' (Klein et al., 1996).

Hidden, implicit, or covert rationing is giving way to

explicit rationing, as discussed at the ®rst world confer-

ence on health rationing hosted in Stockholm in 19961.

This paper explores the history of Britain's e�ective

hidden rationing of dialysis to see how far it conforms

to Sir Raymond Ho�enberg's characterisation of im-

plicit rationing in the UK as `unstated, unwritten,

unacknowledged' but managed humanely (Dean,

1996).2. How was dialysis rationing established and im-

plemented? How was it challenged? How did patients

and doctors respond to it? How and why was policy

altered? Contrasts with the USA and Europe highlight

the connection between the style of health services and

the nature of rationing, with the centralised NHS of

the UK most successfully limiting its provision of this

expensive technology3. This paper will suggest such

contrasts also played a role in altering policy; compari-

sons with Europe, in terms of statistics gathered by the

profession, acted as the strongest weapon in the battle

to defeat dialysis rationing in Britain. This form of

research Ð sheer amassing of records Ð probably had

greater impact on dialysis policy than the sophisticated

theoretical constructs of health economics.

Contrast between early dialysis provision in the USA

and Britain

We begin with the contrasting situation in the USA

and Britain. Long-term dialysis for renal failurebecame possible following an innovation by a Seattlephysician in 1960; clinics sprang up in North America

and Europe but facilities fell far short of demand(Drukker, 1989). By 1973, the USA and Britain haddeveloped policies on funding dialysis which were at

opposite ends of a spectrum. Most Americans whorequired dialysis could receive it, while in Britain Ð

although there was no policy on rationing Ð the fund-ing system meant that access was virtually restricted tofairly ®t patients between 18 and 50 years of age. It is

important to bear in mind the distinctive character ofkidney dialysis as an expensive technology that doesnot cure, but maintains a patient in a state of depen-

dency and therefore prolonged use of that technology:this point has been elaborated by Thomas Halper,

author of the most detailed analysis of British policyon dialysis (Halper, 1989, p. 34). In the early years, theonly routes out of dependency on the machines were

death or renal transplantation. The latter, often thepreferred option later, was still risky in the late 1960s

and early 1970s, and at all times there was a shortageof donor organs.In the USA, an amendment to the Social Security

Act taking e�ect in 1973 allowed Medicare to pay fordialysis Ð not only for the elderly, as with previous

Medicare provision, but for all ages Ð coveringroughly 80% of costs for 90% of the population. Oneview is that the threat of litigation brought about this

policy innovation (Personal communication, nephrolo-gist, 1998). However sociologist ReneÂ e Fox and hercollaborator Judith Swazey, who studied developments

in the ®eld during the 1960s and 1970s, attribute theshift in policy to national concern over dilemmas

posed by dialysis. There were well-publicized cases ofpatients denied dialysis; there was furore over Seattle's`God committee' deciding which patients should enter

the dialysis programme; and when the House ofRepresentatives was debating the use of public fundsfor dialysis, a campaigner was brought in and dialysed

by his wife before the congressmen and women (Foxand Swazey, 1974; Fox, 1979; Gallagher, 1977). The

availability of an e�ective technology put this treat-ment in a special category, unlike, for example, cancertherapies. However it should be noted that public

funding for dialysis did not imply public provision:commercial dialysis facilities were to become a pro®t-able enterprise.

The situation in Britain was so di�erent that by the1980s Halper could conclude, through interviews with

medical civil servants and renal specialists, that thesituation had long been one of `what policy?' on renal

1 With Alan Langlands, chairman of the NHS Executive for

England, among the participants.2 Ho�enberg is a former President of the prestigious Royal

College of Physicians in London.3 Within the NHS, the four constituent parts of the UK

(England, Wales, Scotland and Northern Ireland) are separ-

ately administered; many policies are promulgated through all

four provinces but there are also variations.

J. Stanton / Social Science & Medicine 49 (1999) 1169±11821170

dialysis, rather than any distinct policy (Halper, 1989,

p. 29). However, there had been direct policy inputand funding at a very early stage, when Britain, alongwith Denmark, was following the USA as a world lea-

der in dialysis4. By 1965, dialysis centres had beenestablished by local initiative at Charing Cross, Royal

Free and Hammersmith hospitals in London, as wellas hospitals in Newcastle and Edinburgh; small num-bers of cases were being taken on elsewhere. Seeing

that the technology was here and was spreading in ahaphazard way, the Ministry of Health convened a

conference of experts in March 1965 to advise its o�-cials on the viability of dialysis and the role the centreshould play. The conference was chaired by Max

Rosenheim, a leading renal physician (who soon afterthis became President of the Royal College of

Physicians) and included most of the `pioneer' dialysisphysicians or their senior colleagues who reported onthe experiences of the ®rst year or two. The Chief

Medical O�cer, George Godber, accepted the confer-ence's recommendation that dialysis should be

expanded, `probably on the basis of one major centreper region with subsequent development of satellites'

(Ministry of Health, 1965; Halper, 1989, pp. 31±32).Halper interprets this seeking of advice by the centre

as an ingenious means for the Ministry to incorporate

those eager renal physicians who wished to see dialysismore widely established. By making them party to the

central view, caution was induced. In the name ofexcellence, it was argued, dialysis centres should beestablished only at teaching hospitals, one for each

NHS region (Halper, 1985, pp. 57±58). On the otherhand, there was little public pressure at this stage; it

could be argued that the initiative was coming fromthe centre, whether or not it was reining in its advisers.

In fact, the experts were not as cautious as Halperimplies. Two working parties were set up by the initialconference, one on equipment and another on future

policy. At a further conference in December 1966, itwas agreed `that the ultimate aim should be to provide

facilities for all those who could bene®t from mainten-ance dialysis' (Ministry of Health, 1966). According to

Professor Hugh de Wardener of Charing Cross

Hospital renal unit, who contributed to both confer-ences and to the policy working party, their objectivewas twenty renal centres, in which dialysis should be

integrated with all other aspects of renal medicine andtreatment (de Wardener, 1995). The nascent disciplineof nephrology would have to expand; Godber agreed

the time was right for this (Ministry of Health, 1966).But at this point, the Ministry of Health disbanded the

conference and the policy working party, leaving onlythe equipment group. In de Wardener's view, theMinister of Health became alarmed at the extent of

funding that would be entailed; certainly, money foradditional renal units was not forthcoming.

The central department maintained control over di-alysis ®nance while the promised centres were estab-lished, then in 1971 funding decisions on dialysis were

handed over to the fourteen regions5,6. After the initialjump-start of central funding, there were now tight®nancial constraints on renal dialysis (and transplan-

tation) services, competing with other NHS demands.Following the 1973 oil crisis, the situation worsened

dramatically as the (Labour) government sought econ-omies by making cuts in all hospital services. Evenwhere charities provided kidney machines, lack of

cover for running costs Ð sta� pay and consumablesÐ often delayed their use. Public responsivenesstowards fund-raising e�orts perhaps masked rather

than underlined the inadequacy of funding for dialysis.From the late 1960s, the European Dialysis and

Transplantation Association (EDTA), a grouping ofphysicians practising renal replacement therapies, keptdetailed records, partly in order to argue convincingly

about the need for more resources. By 1976, numbersin the UK on dialysis or with a transplant, at 71.2 permillion population, were about the level predicted for

a country with Britain's gross national product.However, the numbers of new patients accepted each

year were low; whereas the average for all EDTAcountries was 19.1 new patients per million (ppm) peryear, the UK intake was 15.1 (Laing, 1978, p. 30;

®gures for both dialysis and transplantation). Britainwas doing well on rates of transplantation and was aleader in home dialysis, with about a third of UK di-

alysis patients on home dialysis, compared with a ®fthfor all EDTA patients (Laing, 1978, p. 37). But admis-

sion to hospital dialysis programmes was restrictedcompared with other countries, and there were fewerrenal units and renal physicians. Comparisons with the

USA were even more unfavourable. Above all, therewere enormous regional variations (as with many ser-vices); under-resourced regions such as the West

Midlands and Mersey took a third of patients onto di-alysis, compared with more prosperous London

regions (Laing, 1978, p. 39).Thus, from an early expansion, British dialysis pro-

4 Britain had a number of early Kol� arti®cial kidneys, at

hospitals in Leeds, Southampton, Hammersmith and in

armed forces hospitals; these could be used only for short-

term dialysis in acute kidney failure, prior to the 1960 inno-

vation by Scribner mentioned above.5 The Ministry of Health was incorporated within the

Department of Health and Social Security in 1968 and

remained there although it regained the title of `Department'

in 1988.6 Under the original NHS organisation, 14 Regional

Hospital Boards; following reorganisation in 1974, 14

Regional Health Authorities which were intended to have

more integrative functions.

J. Stanton / Social Science & Medicine 49 (1999) 1169±1182 1171

vision had rapidly slowed down: the decline becamemore pronounced over the next few years. Aaron and

Schwartz's (1984) comparison between rationing in theUS and Britain in the early 1980s identi®ed dialysis asthe most extreme case, with Britain providing half as

much dialysis as America per head of population.

Selection of patients for dialysis in Britain, 1960s and

1970s

At a time when rationing of dialysis had been aban-doned in the USA, it continued in Britain; but howdid it actually operate? We can divide rationing into

two levels or types. Firstly, there was `resource allo-cation' rationing by the centre curtailing central fundsearmarked for a special purpose; by the centre impos-

ing limits on regional budgets; and by regions decidingto place limits on the funding of a given treatment. Inthe case of dialysis, all of these restrictions operated in

Britain in the 1970s. Secondly, there was `point of ser-vice' rationing by individual doctors or clinical teams.Since resources were limited, these `gatekeepers' had tochoose which patients should receive treatment and

which to turn away. This process of selection, whichwas openly debated in the USA, was more secretive inBritain, but some clues are available.

In the 1965±1966 meetings of the Ministry group onthe future of dialysis, participants described panels setup in their own hospitals for `patient selection' in case

the need arose. Most had established small medical (orjoint medical/surgical) panels. Only one centre,Liverpool, included a lay member on its panel.

However, participants interviewed thirty years on havelittle recollection of turning patients away even whenfew machines were available. Rather, they say, generalpractitioners and doctors in the wards feeding the

renal units tended to refer only when they knew aplace was available and they had a suitable patient inurgent need. Clinicians and nurses who implemented

the renal services in the 1970s likewise do not recallbeing called on to make decisions on which patients toselect for dialysis (Interviews, renal physicians and

renal nurses).There is some documentary evidence on selection at

the clinical level that suggests Ð as might beexpected Ð a shift from very strict criteria at the

outset, in the experimental stage, towards slightlymore ¯exible criteria later. Between 1963 and 1966, aresearcher at the Royal Free Hospital in London,

evaluating the long-term prognosis for patients onthis experimental treatment, recorded the selection cri-teria. Patients had to be `mature and stable' adults

aged between 20 and 50, without other serious com-plicating diseases. Preference was given to marriedpatients with children and a stable home environ-

ment. Imminent death was, not surprisingly, an

urgent pointer to the need for dialysis, but so was in-

ability to work. Patients need not be highly intelli-

gent, but they needed to grasp the rules for care of

their implanted shunt, and to be extremely co-operat-

ive over their diet. All of these criteria were designed

to enhance the success rate of the treatment. The

measure of success was very ambitious: complete

rehabilitation, de®ned as `being able to perform a full

week's work' with no more than four hours lost

attending for dialysis (Comty, 1966). Much dialysis

was done overnight to enable patients to continue

working. To illustrate the disastrous e�ects of wan-

dering from the diet, an example was given of:

``H.R. [who] had been receiving treatment for one

month when she indulged in chocolate ice cream,

peanuts and fruit juice. When she attended the fol-

lowing day for dialysis, she was observed to be

very anxious, and irritable . . . A few minutes after

the cardiogram, cardiac arrest occurred' (Comty,

1966).

The patient was saved, and `did not repeat the indis-

cretion'; witnessing the near-lethal consequence had

`an excellent e�ect' on the dietary control of other

patients.

A little later, renal units showed keen awareness of

their public image. The shortage of renal dialysis in the

south-central `Wessex' region of England meant good

selection was crucial, according to one doctor:

``Well selected patients . . . were able to contribute

something back to the community . . . Bad selec-

tion brought misery both to the patients and their

relatives . . . the aim of selection must be to try

and choose those patients who would be thankful

for the opportunity afterwards'' (King's Fund,

1971, p. 1).

As elsewhere, selection criteria included relative ®t-

ness, age and social and psychological factors including

that elusive element known as `character'. But there

was room for patients who might not keep to a very

strict diet, provided they accepted longer dialysis ses-

sions instead. At stake was the renal unit's reputation

with the public, the need to show that it was providing

a valuable service at reasonable cost; it could not

a�ord failures. Thus patients were maintained on per-

itoneal dialysis despite its drawbacks, prior to being

taken onto maintenance haemodialysis; it ``was a trial

for the patient but again helped character assessment

and allowed the doctor to judge the patient's personal-

ity and morale without the overlay of uraemic illness'',


which often rendered people irritable and confused

(King's Fund, 1971, p. 2)7.

Home dialysis developed as an alternative to hospi-

tal dialysis from the mid-1960s. There was debate over

the extra burden on patients and their families, versus

the extra freedom and control it gave the patient (de

Wardener, 1966, pp. 115±117). But its compelling

attraction for renal units was that it was cheaper and

freed up hospital beds for new patients. Both in hospi-

tal and at home, patients were encouraged to dialyse

overnight, since the aim was a return to full function

within the community Ð as with the Royal Free

study. In many units at this time, the majority of

patients were males in the economically active age

range, and a measure of success was the proportion

returned to full-time work (Curtis et al., 1969, p. 83).

In order to cut sta� costs, hospital dialysis was handed

over to nurses, technicians and arti®cial kidney assist-

ants (AKAs). In home dialysis, the patient himself (or

herself), together with a partner, provided the work-

force. All these measures, in the words of a renal con-

sultant from Portsmouth, served to combat the threat

of dialysis coming to be seen as ``a luxury which the

country could no longer a�ord'' Ð a phrase indicating

real anxiety over the viability of dialysis programmes

(King's Fund, 1971, p. 3)8.

Although selection procedures such as those

described in this section were relaxed to some extent as

services expanded, more stringent selection operated in

Britain than in other wealthy countries right through

to the 1980s. Despite the expansion of cheaper options

Ð home dialysis and transplantation Ð the shortage

of hospital dialysis meant that `unsuitable' patients

were not receiving any form of dialysis or the chance

of a transplant (which normally depended on an initial

period on dialysis). Patients were not dramatically and

visibly turned away by renal specialists, but many

sicker or older patients were not put forward by their

doctors for acceptance onto dialysis programmes.

Perhaps notions about `suitability' devised in the ear-

lier, more experimental period, as outlined in this sec-

tion, fed back from the front line to the reserves Ð to

the general practitioners and general physicians Ð andremained in force there for much longer.

`Simple' economic research and a shift in policy?

In late 1977, extra funds were made available to buykidney machines for children; and in April 1978 theSecretary of State for Social Services, David Ennals,

announced that an additional £3.5 million would bemade available to buy 400 new adult kidney machinesto be dispersed around the regions. Although it keptstructural constraints in place, and thus did not consti-

tute a long-term policy shift, the impetus of this moveby the DHSS needs some explanation. The next sectionwill examine political pressures, but ®rst we brie¯y

examine what looks at ®rst glance like a powerfulresearch in¯uence, a report by Laing (1978). Laingwrote this report for the O�ce of Health Economics (a

body set up by the Association of the BritishPharmaceutical Industry in 1962 at a time when healtheconomics was barely emerging) and thus it appearedas completely independent research.

Laing's (1978) sixty-page report showed clearly andcomprehensively for the ®rst time just how far Britainlagged behind its neighbours in renal provision. Laing

used the proceedings of the Europe-wide body EDTA,which, from the mid-1960s, secured remarkably fullreturns from the countries it covered. The EDTA data

was at that time unrivalled by other branches of medi-cine. It covered numbers of renal physicians, nurses,patients, units, machines in each country, death and

survival rates for haemodialysis in hospital and home,and for kidney transplants. Laing was able to demon-strate Britain's low level of intake of new patients, andits small number of renal units and specialists com-

pared with other countries.It would make a tidy story, and the paper could end

here, if Laing's report had been the dynamite that

blew the British policy of covert rationing sky-high.But the decision to fund extra dialysis machines hadalready been made before the report was ®nished, as

evidenced in Laing's discussion of the initiative, whichhe saw as a possible harbinger of change:

`` . . . events in April 1978 suggest that the policy of

minimal intervention may be in a process of refor-mulation with respect to facilities for renal failure. . . In so far as money has been designated speci®-

cally for dialysis machines this represents a shift ingeneral policy with regard to central involvement inregional resource allocation decisions . . . '' (Laing,1978, p. 51).

The Department might have been privy to a draft ofLaing's report, in which case the shift in policy could

7 Peritoneal dialysis entails insertion of a tube and using the

abdominal cavity for dialysis (as opposed to running blood

from a blood vessel through an arti®cial kidney as in haemo-

dialysis). Although technologically simpler and therefore

cheaper, it was still at this date (1971) beset by hazards of

infection; even without these, it was uncomfortable. From

1978, use of new materials made the technique more accepta-

ble and it rapidly became more widespread especially in

Britain.8 Besides economic qualms, dialysis units raised serious ad-

ditional anxiety around this time due to outbreaks of hepatitis

(Stanton, 1995).


be interpreted as a pre-emptive strike, but Laing's text

suggests otherwise9. He remained cautious as to

whether there was a real shift towards a `commitment

to comprehensive provision for renal failure', pointing

out that DHSS documents on priorities in the health

services produced after the 1974 reorganisation of the

NHS had not mentioned adult dialysis as a priority

(DHSS, 1976; DHSS, 1977), although the second docu-

ment had proposed that there should be more paedia-

tric dialysis and this had rapidly been followed by

extra funding.

Laing introduced an element of cost-bene®t analysis

into his report by giving a comparison of the cost, or

value, of human life implicit in various policy de-

cisions. Most expensive was that implied in new build-

ing regulations brought in following the disastrous

collapse of the Ronan Point high-rise block of ¯ats;

these might save one life for £20 million (the cost of

the entire dialysis and transplantation programme in

Britain at the time). Failure to introduce child-proof

containers for medicines valued a child's life at under

£1000. Not providing renal replacement treatment for

someone aged 50 placed a value of £30,000 on their

life (Card and Mooney, 1977; Laing, 1978, p. 48). In

discussing these crude estimates, Laing pointed out

that the poor quality of life of some patients on dialy-

sis might sway the equation one way, while on the

other hand, the certainty of helping someone who was

critically ill might appeal more than the theoretical

possibility of preventing accidents to persons

unknown. Above all, certain types of death possessed

higher `carnage value', for example aircraft deaths

compared with road accidents, or Ð Laing was writing

at a time when Britain still had a mining industry Ð

deaths in a mining disaster warranted large expendi-

tures which placed a very high value on a human life.

In terms of `carnage value', deaths from chronic renal

failure only scored if they could gain publicity, which

happened very rarely in Britain.

The extra dialysis provision for children made in

1977 exploited `special medical development' rules

allowing central funding for procedures emerging from

the `experimental' stage. This could not be repeated,

once the procedure was established. Nor in this casecould the source of funds be repeated, as money ear-

marked for breast cancer screening trials was switchedto pay for these paediatric dialysis machines (Laing,1978, p. 50). For Laing, the extra adult machines were

more signi®cant in terms of possible policy change.These machines might raise the number of newpatients each year to the target ®gure of 40 (per

million population), on a par with other Europeancountries; but they would still leave older patientswithout treatment.

At this stage, then, we can summarize the govern-ment initiative as providing more machines for chil-dren and for adults under 50, but not necessarilyshifting towards a comprehensive service. The spring

for the expansion seems not to have been Laing's(1978) report; Laing himself suggested that publicopinion, especially pressure groups, may have been a

main moving force. In the next section, this hypothesiswill be explored through a glance at these pressuregroups and at parliamentary debates possibly re¯ecting

their campaigns.

Kidneys in parliament, 1976±1984

How did voluntary groups put pressure on govern-

ment? The type of campaign mentioned earlier, as con-tributing to extensive dialysis funding in America,clearly did not occur in Britain. In the late 1970s and

early 1980s, there were no `exposeÂ s' in the popularpress of clinicians selecting patients for dialysis; exclu-sion of a patient from dialysis very rarely gained press

publicity. Far more common were reports of localfund-raising e�orts which had succeeded in purchasinga kidney machine for a local hospital (King's Fundcuttings collection)10. As in America, there was more

than one voluntary body in Britain. On one hand, theNational Kidney Research Fund (launched in 196711),which raised money for research into kidney disease,

maintained close links with the Renal Association(founded c.1964), the professional group of renalspecialists. On the other hand, there were two bodies

which raised money chie¯y to support patients Ð pay-ing for machines, holidays for dialysis patients, andsome research. One of these, the National Federationof Kidney Patients' Associations, was formed in the

1960s as a conglomerate of local groups which oper-ated fairly separately. The other, much higher pro®le,group was formed as a breakaway from the National

federation in 1975: this was the British Kidney PatientAssociation (BKPA), founded and run by an articulatecampaigner, Mrs Elizabeth Ward, whose son spent

years on dialysis and received three transplants (Ward,1986; Halper, 1989, pp. 75±81). Of these, the BKPAwas most likely to have in¯uenced policy: Mrs Ward

9 Unfortunately, for this recent period, internal

Departmental records cannot be seen.10 This admirable resource no longer exists. The case most

widely covered in the press was that of Derek Sage, an alco-

holic living in a hostel whose dialysis was curtailed in 1986;

the British Kidney Patients' Association paid for private di-

alysis for his remaining few months of life.11 According to its current Director General, Leslie Rout

(personal communication); Hugh de Wardener put it earlier,

with the ®rst Director appointed late 1965 (de Wardener talk

to NKRF, 1992).


worked hard to keep the issue of renal care before pol-

icy-makers' notice12.

One of the key strategies used by the BKPA was

prompting questions in parliament. Two main themes

predominated: shortages of kidney machines, and ways

to provide more organs for transplantation. The vary-

ing level of dialysis provision from one region to

another was a focus of attack, with MPs seeking to

establish how many patients were refused treatment in

certain areas. In response, the government emphasised

that allocative decisions were made at local level. For

example, in 1976, a health minister provided patient

statistics for each region but added: `Precise details of

dialysis machines are not available centrally . . . '

(Hansard, 1976a). For Scotland, the number of ma-

chines was known but numbers of deaths due to short-

age of machines could not be estimated, since:

``There is no question of a recommended ®gure for

the number of kindney [sic] machines required at

any one time. The level of provision Ð machines,

premises and trained sta� Ð is for decision by the

health boards concerned, in the light of the

resources available'' (Hansard, 1976b).

There could hardly be a more succinct expression of

rationing by delegation to the regions.

But over the following year, pressure grew on the

government to admit that there was a shortfall of di-

alysis in Britain. In July 1977 the Secretary of State for

Social Services produced Ð from EDTA ®gures Ð a

comparison of patients treated (though not of dialysis

machines available) for nine European countries, in

which only Ireland featured below Britain (Hansard,

1977a). Still the government maintained its distance

from responsibility for this problem. In the words of

the Secretary of State: ``I would agree that health auth-

orities are at present providing treatment by dialysis

for less than half the patients who might bene®t from

it. I am, naturally, dissatis®ed with this situation . . . ''

(Hansard, 1977c).

This dissatisfaction was apparently genuine, since by

this time moves were afoot to provide funding for

extra kidney machines, ®rst for children (1977) and

then for adults (1978), as discussed previously. The

money was not distributed according to any central

formula: regions had to put in bids, leading to delays

and continued questions. For example in mid-1978 a

West Midlands member, Patrick Cormack, drew a piti-

ful portrait of a child with renal failure resulting fromtreatment for spina bi®da, who lacked prospects ofrenal therapy (Hansard, 1978b). He adduced compari-

son with Belgium where every patient had access to akidney machine. Alf Morris, Under-Secretary of Statefor Health, replied with the old argument about pro-

fessional discretion: ``The di�cult problem of selectionof patients likely to respond to treatment is the task of

the consultant'' (Hansard, 1978c). But with the newfunding in operation, he was able to add that a newpaediatric dialysis unit was soon to open in

Birmingham.Pressure on MPs to ask questions about individual

cases like this was part of the BKPA campaign; andthe provision of additional resources may have beenprompted, in part, by the government's sense that such

cases, especially where children were involved, mightlead to public embarrassment. Input from clinicianso�ering informal advice, fed in through the All Party

Disablement Group, probably also stressed that clini-cal parameters were shifting, with other countries treat-

ing young patients who had previously been regardedas `unsuitable'. But the most persuasive argumentappears to have been Britain's poor comparative per-

formance.A great deal more heat, however, was generated by

another kidney-related theme: the shortage of kidneys

for transplantation. Tam Dalyell, member for theScottish constituency of West Lothian, consistently

spoke on behalf of the BKPA campaign for a `con-tracting out' kidney donation scheme. This wouldallow organs to be removed from any dead body,

unless the person, while alive, had expressed a wish toopt out of donation. He secured a House of Commonsdebate on this issue in November 1977, where he

spoke of the waste of organs and the su�ering of `poorsouls on dialysis', re¯ecting Mrs Ward's rather nega-

tive view of dialysis (Hansard, 1977b). A secondCommons debate in March 1978 resulted in a majorityin favour of a contracting out scheme for organ do-

nation, (Hansard, 1978a) but there was no obligationon the government to follow the view of the House ofCommons, and the scheme was never introduced. The

government of the day, and succeeding governments,believed public opinion was not ready. Instead they

preferred to promote the donor card scheme, whichDalyell said produced nowhere near enough kidneys13.

Fortuitously, at this point when pressure was build-

ing to expand dialysis services, another technologicalinnovation provided a cheaper option. While haemo-

dialysis facilities expanded a little over the next fewyears, a much greater expansion in dialysis capacitycame about through a newly enhanced technique

known as continuous ambulatory peritoneal dialysis(CAPD). Between 1979 and 1981 the use of CAPD

12 In addition the BKPA conducted high-pro®le fundraising

campaigns, notably a Blue Peter appeal in 1983 which netted

£2.5 million.13 However, the establishment of a centralised national net-

work for allocating available organs has improved avail-

ability.


expanded from 5.2 to 27.6% of new patients(Hansard, 1983b).

Great discrepancies remained between regions, inpart a legacy of previous inequalities. To complaintsthat the West Midlands was still poorly provided with

dialysis in 1983, the government reply was that: ``Nogeneral standards for the provision of facilities forrenal dialysis and transplantation have been laid down

by the Department'' Ð an almost verbatim reiterationof the policy that had been in place for over a decade(Hansard, 1983a). In 1984, asked how many patients

in Wales died for lack of dialysis treatment, a spokes-man refused to answer, but his ®gure for those treatedÐ 28 new patients per million Ð fell far short of thetarget of 40±50 suggested by the questioner (Hansard,

1984). Despite the extra central funding of 1977 and1978, and despite the advent of CAPD, patients werestill failing to receive treatment, and clinicians were

still having to exercise selection.

Was Britain killing kidney patients: the medical press,

1981±1984

If the renal specialists had kept in line thus far, pro-viding indirect input into policy, they now brokeranks. Ironically, their most vociferous outbursts were

precipitated by a study under the auspices of that mostaugust professional body, the Royal College ofPhysicians, which numbered nephrologists among its

leading ®gures14. This study, whose ®ndings were pub-lished in the British Medical Journal in July 1981(Medical Services Study Group of the Royal College

of Physicians, 1981a), looked at deaths from chronicrenal failure in two regions of England and one inScotland, and concluded that none of the patients agedbelow 50 who had died of kidney failure had been

refused dialysis because of lack of machines. Rather, itargued, many were unsuitable for dialysis because ofconcurrent disease, a point which was underscored by

showing that many who were given dialysis, if theyhad other disease, did not survive for long. But theunevenness of provision presented a problem, and per-

haps where rates of dialysis were low:

`` . . . more general practitioners may think that fa-cilities are inadequate and therefore a higher pro-

portion of patients than elsewhere are neverassessed by a nephrologist; this may in part explainwhy we found no shortage of dialysis facilities . . . ''

(Medical Services Study Group of the Royal

College of Physicians, 1981a).

Did patients die because they were too ill to bene®t

from dialysis, or because facilities were restricted? This

report came down ®rmly in favour of the ®rst view,

and moreover argued that the general public Ð which

clearly believed that many lives could be saved if there

were more kidney machines Ð should be better

informed. If a shift was called for, it was for more kid-

neys to be `harvested' for transplant (Medical Services

Study Group of the Royal College of Physicians,

1981b). The report upheld the government line of the

past 10 years.

There was a fast and furious response, including a

critical editorial in the same issue (BMJ Editorial,

1981) and heated correspondence. The inclusion of

mental subnormality and social problems as grounds

for rejecting patients Ð revealed in the Royal College

of Physicians report (1983) Ð was seen as close to

eugenic control. Medical grounds were also open to

challenge as dialysis had become technically more

sophisticated. Another crucial issue implicitly raised by

the report was the uno�cial but widespread British

practice of dialysing only patients under 50 years of

age. A British nephrologist who had moved to

America, Geo�rey Berlyne, put this most forcefully,

arguing that patients su�ering uraemia (the conse-

quence of kidney failure) who happened to be over 50

were virtually condemned to death in Britain (Berlyne,

1982).

A leading attack came from Anthony Wing, consult-

ant physician and renal specialist at St Thomas's

Hospital, London, and chair of the EDTA registration

committee that oversaw the collection of European-

wide data. Wing had previously written about

restricted resources in specialist forums, but now went

more `public'. His opening salvo was an editorial in

the British Medical Journal in which he argued for

extension of provision to patients aged over 65, or

with diabetes, as in other countries (Wing, 1983).

Although there were `no special British rules' on who

should be treated and who excluded, Wing argued

that:

`` . . . limited facilities for treatment have made it

necessary for British physicians to practise selection

to a degree which seems strange, even barbaric, to

our colleagues in other civilised countries . . .

`Rationing' has resulted in a highly cost e�ective

national programme for the treatment of end stage

renal failure. But is it humane?'' (Wing, 1983).

Wing was able to cite a recent television programme

on `A lottery for life' and an article in the New

Socialist (!) using the term `murder by neglect' as indi-

14 A later and lesser instance of the College's `policy' role,

exempli®ed in connection with smoking in the 1960s Ð see

Berridge's paper in this issue.


cations of greater public scrutiny of selection pro-

cedures. But the questions of how under-resourced the

renal services in Britain might be, and the ways in

which physicians acted as gatekeepers, were still open

to argument.

With a team of colleagues at St Thomas's, Wing

undertook a survey of doctors' attitudes to selection

for renal treatment and found that general prac-

titioners and non-renal hospital doctors appeared more

willing to reject patients than did nephrologists, when

confronted with a list of putative patients su�ering

from renal failure and other medical and/or social pro-

blems. Apparently:

`` . . . under-referral of patients to renal units con-

tributes to the low acceptance rate for dialysis and

transplantation in the United Kingdom . . . It will

be of little value to change referral practice, how-

ever, unless there is a corresponding increase in

nephrologists and renal replacement services to

cope with 50 new patients per million population

each year'' (Challah et al., 1984, p. 1122).

This could have been interpreted as special pleading

by specialists to swell their ranks, but their case was

greatly strengthened, as ever, by comparison with

American and European practice. Many patients with

the sort of complications listed in this study would at

least have received consultation with a nephrologist, if

not renal replacement therapy, in other countries.

In a forum of nephrologists a year later, Wing

refuted Berlyne's suggestion that èvil rules' existed to

refuse British patients the right to dialysis: `Às he well

knows, there are no such laws or edicts by the

Department of Health. British nephrologists have not

been turning away the missing patients''. These missing

patients would be especially those aged over 50 as dis-

cussed by Berlyne. Wing's interpretation was of ``nega-

tive selection occurring at an early stage in the referral

process'' and he asked, ``Who are the `gatekeepers'

controlling access to facilities?'' (Wing, 1985, p. 261).

That this was a rhetorical question became obvious

when Wing claimed that he himself seldom had to turn

patients away because `colleagues upstream' Ð general

practitioners or consultant physicians Ð ®ltered them

out (Wing, 1985, p. 271).

The two pieces of research discussed in this section

may have had an impact out of proportion to their

size, because they openly asked, for the ®rst time,

exactly how doctors made choices about o�ering dialy-

sis. The Royal College of Physicians study back®red,

leading to a strong counter-attack by Wing and col-leagues, showing how selection by physician-gate-

keepers worked. Together with the EDTA data, thesestudies removed the veil from covert rationing: boththe fact that rationing occurred, and the mechanism by

which it was operated, were no longer concealed. TheNHS Ð a `socialised' centralised system Ð was evi-dently much more e�ective in restricting the use of this

expensive technology than the American free-marketdecentralised system. However at this point, whenmore and more expensive technologies were coming

onstream, a British government with a free-marketideology chose to expand dialysis provision.

1984±1990: target-setting, contracting-out, and QALYs

In the early 1980s, the Thatcher Conservative gov-ernment attacked ine�ciency in the NHS, partlythrough rhetoric and partly through switching to out-

put measures, such as `target-setting'. One of the ®rsttargets was for renal therapies: in 1984 the governmenttold all regions to reach 40 ppm by 198715. With aspurt in renal treatment in Britain in the next two

years Ð numbers of new patients increased by morethan a third Ð most regions reached the target by1986 (Halper, 1989, p. 65). No earmarked resources

were provided; the increase was partly achieved bystepping up use of CAPD or the cheapest arti®cial kid-neys, but possibly this sharp rise in dialysis involved

cuts elsewhere.We should not confuse target-setting with priority-

setting: the former is a means of attempting to improve

standards within a chosen area, while the latter aimsto rank services and allocate resources according toimportance. Still, we may ask why dialysis was priori-tised for target-setting. Halper discounts pressure from

the profession as a factor, describing this as symbolictargetting of an area which had become noticed by asympathetic public as a result of the BKPA activities.

Despite his view that parliamentary questions had noe�ect on policy, he concludes that: `Ìt is hard tobelieve that the government would have chosen ESRD

as a performance target had it not been for the exer-tions of Mrs Ward'' (Halper, 1989, p. 81). This viewprobably needs to be modi®ed in the light of theBKPA's lack of success over the contracting out donor

scheme. The BKPA publicity and other public pressuremay have been a factor, but we cannot discount pro-fessional pressure, especially the new frankness about

rationing and selection discussed in the previous sec-tion. Rationing was a politically sensitive issue, per-haps especially for a right-wing government that was

vulnerable to accusations of undermining the NHS.In the view of a medical civil servant with responsi-

bility for acute hospital services, successive health min-

15 That is, 40 new patients per million per annum; advisers

suggested this would achieve full coverage of patients who

could bene®t from the level of technology then available.


isters had indeed been embarrassed over the shortfall

in Britain's dialysis provision. Serious problems wereobservable in several areas, notably renal dialysis, hipreplacements and coronary artery bypass operations.

Of these, dialysis had presented awkward problemswhich ministers had been working on for years.Uneven distribution obviously called for remedy. Also

in the case of dialysis, there was the advantage of agenerally agreed target; although later, it became clear

that 40 ppm had been too low a target. The advantageof setting targets was that subsequently theDepartment could question regions that failed to meet

them, and demand further action (interview, medicalcivil servant, 1997). According to this source, there

was no doubt that the NHS in general and dialysis ser-vices in particular, were seriously underfunded in the1980s.

On the other hand, target setting provided no extrafunds. As Webster points out in his history of theNHS, by 1979 (before the Conservative government

came to power), ``problems of waste and e�ciency sav-ings were being seriously addressed and health auth-

orities were becoming accustomed to being expected to®nance expansion on the basis of e�ciency savings''(Webster, 1996, p. 761). When systematic reviews were

introduced at regional and district level, employingperformance indicators, dialysis may have seemed ripe

for target-setting not only because of its public pro®lebut also because of the general agreement about thesorts of numbers to employ. Targets could be set with-

out additional resources owing to the assumption ofe�ciency savings.An important debate in the 1980s, since the British

government was privatising so many publicly-ownedfacilities, was whether it intended to privatise the

NHS. This would have been deeply unpopular with anelectorate whose adherence to the NHS cut acrossparty lines. While consistently denying an agenda of

NHS privatisation, the government enforced competi-tive tendering which often resulted in private ®rms tak-

ing over services such as cleaning of hospitals. In themid-1980s, contracting-out was experimentallyextended to dialysis. Wales was particularly under-

resourced, as parliamentary questions had revealed.When a new regional dialysis centre was set up inSwansea, tenders were invited for subsidiary units in

surrounding more rural areas. Commercial ®rms beatNHS tenders, and two pilot units opened in 1985.

Contractors provided both equipment and non-medicalsta� and received a fee for each dialysis session; theonly NHS input was clinical supervision by the con-

sultant at the main renal unit. Preliminary evaluationshowed the service to be no cheaper or more e�ective,but no worse, than comparable NHS services (Mays,

1990). Low-supervision dialysis centres have been pro-vided elsewhere by manufacturers, but systematic con-

tracting-out did not expand following the experiment

in Wales, possibly for political reasons.At the same time, a `micro-economic' branch of

health economics cast light on the cost-e�ectiveness of

dialysis. From the 1970s, British and Canadian healtheconomists developed the Quality Adjusted Life Year

(QALY) to increase the transparency and economiclogic of resource allocation decisions. (The British andCanadian health care systems shared features of fairly

universal coverage but severe budget constraints.)Previously, in accident and injury contexts, the bene®tsof prolonging life had been measured in terms of con-

tinued earnings, or the amount people would be willingto pay to avoid injury or death. Health economists

looking at medical treatments realised they should `fac-tor in' the quality of prolonged life Ð as doctors hadimplicitly been doing for years, in clinical decisions

such as those about dialysis (interview, health econom-ist; Challah et al., 1984). Thus the QALY was broughtinto the cost-bene®t equation.

In 1985 Alan Williams, of the York centre for healtheconomics, published a paper in the British Medical

Journal on coronary artery bypass grafting, giving forthe ®rst time a major public airing to a comparison ofthe cost per QALY for various treatments in Britain

(Williams, 1985). The very poor comparative perform-ance of dialysis in this table fuelled controversy overspending more of the country's scarce health funding

this way. At the same time as dialysis services werebeing extended to more patients to meet the new tar-

gets set by government, the dispassionate (but con-tested) scoring of QALY tables showed dialysis to bevery ine�cient in terms of extra QALYs gained for a

given expenditure.Dialysis Ð speci®cally haemodialysis in hospital Ð

continued to feature in QALY tables as the treatmentcosting most per QALY gained (Mooney, 1992, p. 45).Transplantation ®gured in many studies as a more

cost-e�ective treatment than dialysis but, of course,transplantation was not clinically separable from dialy-sis. Patients who would ultimately be o�ered a kidney

transplant usually needed to be maintained on dialysiswhile waiting for a suitable organ, and returned to di-

alysis if the transplant was rejected. But by and large,cost-e�ectiveness measures pointed away from allocat-ing more resources to dialysis, as Normand demon-

strated in 1994 in a review of sixty studies of cost-e�ectiveness of renal treatments (many using theQALY approach) from 1975 to the 1990s (Normand,

1994).In part the high cost of the QALY in renal replace-

ment therapies arose from the short life-expectancy ofpatients on these treatments, a problem exacerbated inelderly patients. Extending dialysis to elderly patients

was contra-indicated in QALY terms (Normand,1994). On the other hand, research using a qualitative


approach suggested that, although life expectancy

might be low, quality of life of elderly patients could

be better compared with the young, since older people

adjusted more readily to the restrictions imposed by di-

alysis (Auer, 1988; Farquhar, 1995). Is this sort of

research referred to more favourably by policy-makers

than the QALY brand of health economics research,

as dialysis services to the elderly have continued to

expand? It is di�cult as yet to detect the impact of

either. Rather, the trend towards target-setting noted

for the 1980s has continued, with the mid-1990s wit-

nessing a target of 80 patients per million: the level of

the target appears to have been set in order to bring

Britain into line with European countries (Interview,

renal physician).

In 1989 the Thatcher government proposed a funda-

mental change in the way the health service was run,

in a White Paper called `Working for Patients' (DoH,

1989)16. According to one source, the health economics

community was `caught sideways' by this move, which

had come from internal deliberations between the

Prime Minister, Secretary of State for Health, and the

Prime Minister's `Think Tank' (No. 10 Downing Street

Policy Unit) including right-wing economists

(Interview, health economist). Where most health econ-

omists in the British centres (York and Aberdeen)

would have advocated a mixed approach, avoiding the

extreme market orientation of the American model,

the 1989 White Paper introduced a purchaser/provider

divide that forced every item and service in the NHS

to be priced, and encouraged commercial provision.

Yet, the experiment in contracting-out dialysis ser-

vices in Wales has not inspired imitation. In the 1990s,

Britain's renal services take on new patients at a rate

close to that in Europe or America, but this has been

achieved largely through using cheaper options in

treatment, as before, rather than through private

®nance. The internal market brand of health econ-

omics has not directly shifted dialysis policy. Nor does

the QALY brand of health economics appear to have

impacted on dialysis policy. The actual pattern of

renal therapies in Britain, favouring more cost-e�ective

treatments, was set by historic macro-economic con-

straints rather than micro-economic rationality.

Hospital trust managers and regional health authorities

appear to be little in¯uenced by research ®ndings from

health economics as far as dialysis is concerned, even

though they may listen to health economists on other

issues. In a recent local case, where a health authority

is attempting to introduce transparent rationing of di-

alysis, there appears to be a continuation of the older

clinical criteria, including potential life years gained by

treatment, lack of co-morbidity, and capability of inde-pendent living: no sign of the QALY (Wiltshire Health

Authority, 1997).

Discussion

The observant reader will have noted that this paperstarted with two false premises. One of these was fairlyexplicit: the assumption that health economics research

logically ought to have been sought-after by policymakers faced with rationing. With this expectation inmind, it seemed surprising that regions were asked tostep up their provision of dialysis just at a time (the

mid-1980s) when health economic studies using theQALY showed dialysis to rank rather low. Of coursewhen we break down renal therapies into di�erent

modalities, it emerges that most of the expansion thattook place was in the cheaper ones, notably CAPD.The QALY comparison of one renal treatment against

another supported this trend; but the trend cannot beclaimed to have resulted from the new health econ-omics research. Rather as this paper and other ana-lyses have shown, the historic pattern in Britain tended

to favour the less expensive against the more expensivemodalities, because of serious resource constraints. Bychance, CAPD came in as a much cheaper alternative

to haemodialysis at the start of the 1980s, allowingexpansion without huge input of resources.The QALY tool has been sought by policy-makers

for decisions at the margins, for add-on therapies Ðspeci®cally, to help decide whether the very expensivedrug erythropoietin should be given to reduce the

anaemia su�ered by patients on haemodialysis (Leeseet al., 1990). But additional therapies are preceded bythe initial decision to provide dialysis, and the overallmove during the past decade has been towards raising

targets, including more dialysis of the sick and elderly.Here policy-makers part company with health econom-ists, since the latter have shown the relatively low cost-

e�ectiveness of dialysis for the very elderly. Again thispaper argues for a historical understanding of this situ-ation. During the long era of covert rationing of dialy-

sis in Britain, age was one of the main criteria used by`gate-keeping' doctors. Once it had become discreditedby the debates of the 1980s, it would become doublydi�cult to re-introduce an age criterion.

The second false premise was implicit in the openinggambit, with the reference to e�ectiveness and e�-ciency: for there was never any question that renal di-

alysis was successful in prolonging life. It falls into thecategory of interventions, identi®ed even by ardentadvocates of randomised control trials, as not requir-

ing such trials. Were it not expensive, it would scarcelybe controversial. As we saw for the United States,making enough money available resulted in a rate of16 Implemented in 1991.


dialysis double that of Britain. Actually this has not

been totally uncontroversial Ð in purely clinical terms,

apart from cost Ð since a proportion of patients

received dialysis when in extremis; along with other

technologies, it may not have made their last days

more comfortable.

The main charge levelled against the British NHS in

relation to covert rationing of dialysis has been that it

allowed people to die unnecessarily. This was the

charge raised by the patients' pressure group from the

mid-1970s, and by renal physicians from the early

1980s. Rudolf Klein and colleagues recently called it

`rationing of a very brutal kind' (Klein et al., 1996, p.

42); following Halper's interpretation, they see the pat-

tern for cost constraints in renal dialysis as set by the

Ministry of Health co-opting the specialists in the

1960s. Moreover they say this pattern was followed in

the case of other new technologies such as heart and

liver transplants in the 1980s. According to both

Halper and Klein, the initial professional consensus to

limit the number of centres, which was engineered by

health o�cials, hampered public debate on the ration-

ing of dialysis. Their analysis, however, ascribes to the

pressure group and the public awareness it engendered,

the expansion of dialysis in the 1980s. This paper has

pointed out that one main aim of the BKPA, a con-

tracting-out scheme to increase the supply of kidneys

for transplantation, was unsuccessful, suggesting a

di�erential e�ect on public opinion. The organisation

was far more e�ective in gaining public sympathy (and

funds) for dialysis, than in raising a groundswell of

public favour for its opt-out organ donation scheme,

despite sturdy support for the latter in parliament.

For renal units generally (dialysis and transplan-

tation), we need to factor in the professional call for

expansion which built up momentum in the early

1980s17. Whether calling for more resources or for an

expansion of the discipline, renal doctors knew by this

stage that they were operating in the context of gov-

ernment sensitivity raised by pressure group cam-

paigns. By setting targets for dialysis, the government

in the 1980s opted for a low-cost policy that answered

the speci®c charge of uneven provision of services

between regions. Planners took advice from renal

specialists on setting targets, and on how to achieve

them (Interview, regional renal consultant; Wood et

al., 1987). Thus the apparent shift in decision making

into the hands of managers from the late 1980s prob-

ably left consultants with considerable power.

However, the recent opening up of debates on

rationing shows signs of allowing others Ð perhaps es-pecially public health doctors and health policy experts

Ð greater in¯uence. While still seeking to be informedby clinical specialists for each service, planners havebegun to contemplate the previously unthinkable:

explicit rationing. Ironically, in the British context, di-alysis appears likely to be one of the target areas forrationing as in the Wiltshire example mentioned earlier

Ð having only a decade or so previously been one ofthe target areas for expansion. In fact `rationing' ascurrently proposed seems not to mean contraction of

services, but rather stabilisation together with rational-isation of allocation. But it will be seen by the publicas rationing, which in the historical context of theBritish NHS was not supposed to happen. As this

paper and others have pointed out, the NHS in facthad a long history of covert rationing of dialysis, incontrast with the uncentralised American health system

which made an exception for dialysis but paid heavilyfor its high consumption of this expensive medicaltechnology.

While subtle health economics arguments appear tohave had little impact so far on policy makers or onpublic debate over rationing dialysis, simple statistical

comparisons between the performance of Britain andother European countries, and within Britain betweenregions, increasingly persuaded policy makers to intro-duce changes. This was important in the late 1970s

and grew in impact through the 1980s. While statisticsof this sort continue to count heavily, the more opendebates on rationing may be whetting policy-makers'

appetites for a more varied range of research inputs: inthat case, health economics will be ready with itsinstruments. Above all, however, policy makers at the

millennium will have to engage in e�ective publicdebate, and for this they and the whole gamut ofresearchers will have to view issues like those arounddialysis in their intractable complexity, and learn a

more demotic language to discuss them.

Acknowledgements

The historical research of which this paper is one

outcome was funded by the Wellcome Trust; all in-terpretations and opinions are the author's soleresponsibility.

References

Aaron, J.H., Schwartz, W.B. 1984 The painful prescription:

rationing hospital care. Brookings Institution,

Washington.

Auer, J. 1988 Dialysis of the elderly, M.Phil. Thesis,

University of Southampton.

17 Besides controversies over rationing of dialysis discussed

in this paper, there was a lower-pro®le report calling for an

increase in specialist manpower (Royal College of Physicians,

1983).


Berlyne, G.M., 1982. Over 50 and uraemic=death. Nephron

31, 189±190.

BMJ Editorial, 1981. Audit in renal failure: the wrong target?

British Medical Journal 283, 261±262.

Calabresi, G., Bobbitt, P., 1978. Tragic Choices. Norton,

New York.

Card, W.I., Mooney, G.H., 1977. What is the monetary value

of human life? British Medical Journal 2, 903±906.

Challah, S., Wing, A.J., Bauer, R., Morris, R.W., Schroeder,

S.A., 1984. Negative selection of patients for dialysis and

transplantation in the United Kingdom. British Medical

Journal 288, 1119±1122.

Comty, C.M. 1966 The maintenance of human life in the

absence of renal function. M. D. thesis, University of

London.

Curtis, J.R., Eastwood, J.B., Smith, E.K.M., Storey, J.M.,

Berroust, P.J., de Wardener, H.E., Wing, A.J., Wolfson,

E.M., 1969. Maintenance haemodialysis. Quarterly Journal

of Medicine 308 (149), 50±89 New Series.

de Wardener, H., 1966. Some ethical and economic problems

associated with intermittent haemodialysis. In:

Wolstenholme, G., O'Connor, M. (Eds.), Proceedings of

Ciba Symposium on Ethics in Medical Progress. Churchill,

London, pp. 104±118.

de Wardener, H. 1995 Interview, 8 September.

Dean, M. 1996 A ration of compassion. The Guardian 23

October, G2p9.

Department of Health (DoH), 1989. Working for Patients.

HMSO, London.

DHSS 1976 Priorities for health and personal services in

England. HMSO, London.

DHSS 1977 Priorities in the health and social services: the

way forward. HMSO, London.

Drukker, W., 1989. Haemodialysis: a historical review. In:

Maher, J.F. (Ed.), Replacement of Renal Function by

Dialysis. A Textbook of Dialysis. Kluwer Academic,

Dordrecht, pp. 20±86.

Farquhar, M., 1995. Elderly people's de®nitions of quality of

life. Social Science and Medicine 41, 1439±1446.

Fox, R., 1979. Essays in Medical Sociology: Journeys into the

Field. John Wiley & Sons, New York.

Fox, R., Swazey, J., 1974. The Courage to Fail. A Social

View of Organ Transplants and Dialysis. University of

Chicago Press, Chicago.

Gallagher, E.B., 1977. Home dialysis and sociomedical policy.

In: Stacey, M., Reid, M., Heath, C., Dingwall, R. (Eds.),

Health and the Division of Labour. Croom Helm,

London, pp. 63±87.

Halper, T., 1985. Life and death in a welfare state: end-stage

renal disease in the United Kingdom. Milbank Memorial

Fund Quarterly 63, 52±93.

Halper, T., 1989. The Misfortunes of Others: End-Stage

Renal Dialysis in the United Kingdom. Cambridge

University Press, Cambridge.

Hansard, 1976a David Owen, Minister of Health, 24 May.

Written answers, col. 74.

Hansard, 1976b Harry Ewing, Secretary of State for Scotland,

2 August. Written answers, col. 583.

Hansard, 1977a Mr Moyle, Secretary of State for Social

Services, 20 July. Written answers, col. 624.

Hansard, 1977b Tam Dalyell, 7 November. col. 454±455.

Hansard, 1977c Mr Moyle, 14 November. Written answers,

col. 59.

Hansard, 1978a Kidney donors, 3 March. col. 831±902.

Hansard, 1978b Patrick Cormack, Sta�ordshire South-West,

12 June 1978. col. 795.

Hansard, 1978c Alf Morris, Under-Secretary of State for

Health, 12 June. col. 799.

Hansard, 1983a Ge�rey Finsberg, Hampstead and Highgate,

21 February. Written answers, col. 357±358.

Hansard, 1983b John Patten, Under-Secretary of State for

Health, quoting EDTA ®gures for 1982, 8 November.

Written answers, col. 68.

Hansard, 1984 Wyn Roberts, quoting EDTA ®gures for 1982,

21 February. Written answers, col. 504.

King's Fund .1971. Renal Dialysis Unit Sta� Discussion

Group: report of a meeting held at St Mary's Hospital,

Portsmouth. Mimeographed report.

Klein, R., Day, P., Redmayne, S., 1996. Managing Scarcity:

Priority Setting and Rationing in the NHS. Open

University Press, Milton Keynes.

Laing, W., 1978. Renal Failure: A Priority in Health? O�ce

of Health Economics, London.

Leese, B., Hutton, J., Maynard, A., 1990. Costs and Bene®ts

of Use of Erythropoietin in Treatment of Anaemia Arising

from Chronic Renal Failure: A European Study. Centre

for Health Economics, University of York.

Mays, N. 1990 Management and resource allocation in end

stage renal failure units: a review of current issues. King

Edward's Hospital Fund for London, London.

Mechanic, D., 1979. Future Issues in Health Care: Social

Policy and the Rationing of Medical Services. Free Press,

Collier Macmillan, New York, London.

Medical Services Study Group of the Royal College of

Physicians, 1981a. Deaths from chronic renal failure

under the age of 50. British Medical Journal 283, 283±

286.

Medical Services Study Group of the Royal College of

Physicians, 1981b. Donation of kidneys. British Medical

Journal 283, 286±287.

Ministry of Health. 1965. Conference on intermittent di-

alysis for chronic renal failure. Mimeographed min-

utes.

Ministry, of Health 1966 Conference on intermittent di-

alysis for chronic renal failure. Mimeographed min-

utes.

Mooney, G., 1992. Economics, Medicine and Health Care.

Harvester Wheatsheaf, Hemel Hempstead.

Normand, C., 1994. Health care resource allocation and the

management of renal failure. In: McGee, H., Bradley, C.

(Eds.), Quality of Life Following Renal Failure. Harwood

Academic Publishers, London.

Royal College of Physicians of London. 1983. Manpower and

workload in adult renal medicine in the United Kingdom

1975±1983. College Committee on Renal Disease and

Executive Committee of the Renal Association, typed

report.

Stanton, J. 1995 Health policy and medical research: hepatitis

B in the UK since the 1940s. PhD thesis, University of

London, chap. 4.

Ward, E., 1986. Timbo. Sidgwick and Jackson, London.

Webster, C. 1996 The health services since the war. Volume


II: Government and health care. The British National

Health Service 1958±1979. The Stationery O�ce,

London.

Williams, A., 1985. Economics of coronary artery bypass

grafting. British Medical Journal 291, 326±329.

Wiltshire Health Authority. 1997. Renal replacement therapy:

purchasing review and recommendations. Paper WHA/97/

64.

Wing, A., 1985. Treatment of renal failure in the light of

increasingly limited resources. Controversies in

Nephrology 44, 260±274.

Wing, A., 1983. Why don't the British treat more patients

with kidney failure? British Medical Journal 287, 1157±

1158.

Wood, I.T., Mallick, N.P., Wing, A.J., 1987. Prediction of

resources needed to achieve the national target for treat-

ment of renal failure. British Medical Journal 294, 1467±

1470.


the cost of living: kidney dialysis, rationing and health economics in britain, 1965–1996

Documents