A confrontation of historical assumptions

E J Will

Introduction

Just as there were floods before Noah, there were attempts to calibrate the demand for renal replacement services in England before the national, landmark, Renal Association (RA) sponsored studies of 1990.^1-4

 It seems relevant to unpack what was a more than 15-year delay in acknowledging the inadequate investment in Renal Services in England, well after the feasibility of sustainable rescue from end stage renal failure had been established. That involves discussing local tactics and national strategy, through the work in Nottingham as an example. The 1990s initiative can also be seen as a major step in the maturation of the specialty, discussed here as an example of the ultimate acceptance and incorporation of technological developments.

Maintenance Haemodialysis

The Department of Health decided in the mid-1960s to fund regional facilities for maintenance haemodialysis. A series of dedicated units, typically staffed by single-handed consultants, was expected to establish home haemodialysis and develop the necessary supporting services. That responsibility was demanding and required considerable entrepreneurship, since the organisation was devolved and government funding barely adequate. Lively local interfaces with the public and local charities developed, which involved  fund raising for equipment, research and, subsequently, holiday relief capacity for patients on home dialysis. The necessary local enterprise, professional and lay,  characterised each renal unit in ways that survive today. In many places the availability of renal grafts became an issue. The few transplanting centres, typically academic, were subject to concerns of bias towards their local renal unit patient population. This scenario prompted UK studies that clearly established the epidemiological pattern by 1975, although the English work was not referenced in the 1990/91 papers.

An early tactical initiative in England

Martin Knapp, appointed consultant nephrologist in Nottingham in 1970, after considerable specialty experience in Bristol and the USA, was concerned to understand the local Notts demand for RRT and the role of the renal transplant surgery that had been established in Sheffield. That service had been allocated responsibility for the large population of the East Midlands and South Yorkshire, including Nottingham and adjacent populations. Despite increasing the cadaveric renal donations from the Nottingham area, subsequently distributed by the national kidney-sharing pool, Martin found a disappointing dearth of grafts offered to Nottingham from Sheffield. Given an awareness also of the possible influence of restricted facilities on the referral rate, the Nottingham staff undertook a survey of possible candidates for replacement therapy in their catchment area of ¾ million.⁵   With the appointment in 1974 of the renal transplant-experienced surgeon Roger Blamey, Nottingham began “in-house” renal grafting and undertook a second survey, of possible cadaveric donations.⁶ In 1975 they reported a rate of 45 per million under the age of 65 needing dialysis or transplantation. As a comparator, even in 1980, there were still no patients over 60 in the large Leeds, St James’s, renal unit and none with diabetic nephropathy. That was, at least, already more than the age-barrier of 50 suggested by  Geoffrey Berlyne, formerly of Manchester then in the USA, in his controversial Nephron editorial of 1982.⁷ Age restriction in the UK was undeniable, even if more passive than active through limited referral to renal services.

The Nottingham figures were plausible given studies from Scotland and Northern Ireland published in 1972.^8,9 The accepted-for-treatment rate in Nottingham had been less than half of  study projections.

Campaigning for increased funding for renal services

The failure of regional health authorities to plan and fund adequately staffed facilities were  exposed by these studies, which were critical in subsequent negotiations to obtain additional resources. They were used, for example, in questions asked in the House of Commons by an MP from the Nottingham area, briefed by Martin Knapp and backed by survey data with the statistics of those treated (and untreated).¹⁰  A campaign in Nottingham was supported by the local media, Radio Nottingham and the Nottingham Evening Post, who exposed the topic as a political “hot potato”. Local members of parliament and cabinet put pressure on relevant government departments to provide the funds needed, using contrasting health region data to illustrate the realities of the situation. In other regions, earlier political activity had been successful in the appropriate siting of facilities, with funding.¹¹

The need for adequate infrastructure for management of renal failure had resulted in many communities setting up funds to buy dialysis equipment. These raised substantial amounts but were quite inadequate without a large increase in NHS funding. The fund-raising campaigns were of value, however, in generating further political pressure to increase central funding for the specialty (and incidentally sometimes allowed the purchase of novel clinical computing equipment).  A letter prepared by Martin, to confront the question of who on a list awaiting dialysis should be left untreated, did not get into the public arena, but posed the clear challenge to government of a ‘waiting list for survival’. These Nottingham tactics were not unique, but similar to less well documented campaigns initiated by directly-engaged nephrologists in other centres.

The absence of the 1970s English data in the 1990/91 RA initiative

Just why the RA sponsored 1990 surveys, based on similar populations, did not reference this earlier work in England must be conjectural. It was included in a BMJ review of 1981, at least, together with further papers from Martin Knapp concerned with the strategies for renal replacement. Literature searches were less comprehensive than today, but the BMJ is scarcely an obscure source. Certainly, the  later RA studies were designed so as to be pinned on the government of the day. It is difficult also to know exactly where the initiative lay in 1990/1, since Professor Mallick became co-opted ultimately as an innovative specialty lead by government. That transition alone presents an opportunity for some more detailed research into the sequence of events, given the major structural transformation of the NHS that was underway at the time.

It says something of the perspective of the specialty that others in England had not published and used similar local surveys over the 15 years between 1975 and 1990.  A clinical rule of thumb, that elderly patients would do less well on dialysis, was pervasive, as was the reservation in treating those with renal disease from diabetes. Available evidence had suggested an incidence of ca. 40 per million under age 60 developing end stage renal failure annually. In 1984 this was adopted as a national aspiration for treatment and by 1986 had doubled the numbers.² However, declared targets tend to become normalised as the ceilings of practical achievement. International comparisons were strategic but had been ineffectual.¹² The Royal College of Physicians of London was never proactive, even apologetic.¹³ The 1980s were a period of intense government concern for the costs of the NHS. There was a general acknowledgement of limited resources, which led ultimately to major NHS reorganisation. Criticism of government had to be carefully balanced, with doctors drawn in as responsible citizens as well as partisan professionals.

A decade of expansion

However, it would be a mistake to think of the situation as static, since the 1991 survey document indicated that between 1984, when the RA first set up a committee to examine the problem, and 1990, the UK new patient acceptance rate had doubled.⁴ Such increments occurred also in several European countries. The extra UK capacity was provided particularly by the newly introduced Continuous Ambulatory Peritoneal Dialysis (CAPD). In many units the patients on CAPD came quickly to outnumber those on haemodialysis.

Ratio of regional new patients per million 1984 to 1990 plotted against the regional PD places per million in 1990. Graphic derived from the 1991 UKRR Report.⁴

Regional PD (series1) and Haemodialysis (series 2) numbers per million in 1990 plotted against the change in regional new patients per million 1984 to 1990.Graphic derived from the 1991 UKRR Report.⁴

The expansion of CAPD in the 1980s seems likely to have undermined the clinician pressure for increased funding, since the presenting patient numbers were being better accommodated. For that reason it is probably important to discriminate the 1970s from the 1980s. The introduction of CAPD, and the preoccupation of clinicians with establishing its place in RRT, gave them in the 1980s a practical dimension and scope that was not available in the 1970s.

In addition, a transient growth in maintenance haemodialysis, given twice rather than thrice weekly, allowed another means to increase those under treatment. Unsurprisingly, that tactic ran into a clinical uncertainty about haemodialysis adequacy, which made a sizeable study using urea kinetic modelling essential.  Unfortunately, the lack of haemodialysis capacity in the UK meant that a formal national study of twice versus thrice weekly treatment could not be undertaken.¹⁴ Whilst some units sustained and even increased their haemodialysis numbers, many seized on CAPD as a solution to problems of capacity that depended more on revenue than capital costs.³ The element that could not be assuaged was the austerity in clinical staffing, since the increased demand for specialist supervision was becoming insupportable. The 1991 document posited a tripling of senior staff numbers.³

Systematic features of the NHS

There are wider implications still, which partially exonerate the medical protagonists. The fact is that the UK healthcare system overall proved to be quite conservative and there was a systematic reluctance to extend the possibilities of renal replacement to the whole population. By contrast there was sizeable expansion of renal replacement in less coherent, and essentially less professionally intertwined, healthcare systems in Europe and the USA. Such developments penetrated NHS nephrological culture in various ways. For example, the creative mindset of Martin Knapp (who was notably absent after 1981) had been twice exercised in the specialty and research ethos of the USA. One could also imagine that Netar Mallick, as a figure rather outside the Magic Circle of the RA (as Chris Winearls himself describes it), brought practical US and European experience, as well as his Mancunian and CAPD credentials, to the challenge.

The generalisation about NHS turgidity is supported by another, contemporary, deficit of adequate healthcare provision in the UK. Whilst the de facto limiting of renal replacement investment was an error of omission, made less clear because of clinical doubts about extending the treatment criteria of age and disease, there was a gross error of commission being enacted in the same decades in the contaminated blood products scandal. That also had its roots in underfunding, as of the national Blood Products Laboratory, but no amount of high-level pressure on governments successfully exposed the problem until recently, after five decades.¹⁵ Clinicians were, then, in several areas, flogging an unresponsive national nag!

Recognising a pattern in the acceptance and incorporation of contemporary technologies

A summary can now be ventured, of the sometimes reluctant unfolding of the self-image of the specialty of Nephrology over seven decades in response to a series of practical challenges. The 1990/1 initiative discussed above was a significant philosophical watershed, with the resolution of RA ambivalence over the nuts and bolts of political activity in the face of NHS intransigence. That shift was analogous in conceptual change to the ultimate RA adoption of the haemodialysis special interest group (nicknamed ‘plumbers’) in 1968. In both cases, the post-1950 academic tradition, of searching for scientific universals, was obliged to recognise practical, technological and economic, clinical pressures. The 1980s development of clinical IT was not afforded the same incorporation, but then came to need further RA attention in the ad hoc Renal Information Exchange Group (RIXG) after the millennium. The UKRR has been used subsequently, as a notional RA agency, to recognise and endorse other subspecialty interests, including patient-accessible IT.¹⁶

More recently, the clarifications of specialty task expressed through Evidence-based Medicine (1995, Standards/Guidelines and the UK Renal Registry – largely clinical science) and Quality Improvement (started 2005, National Service Framework for Renal Services – largely technological) have become recognised in the fashioning of a multi-professional specialty sector. This evolutionary step has been manifested structurally through the recent amalgamation of the RA and British Renal Society (BRS) as the UK Kidney Association (UKKA). The arrangement offers a firm place for allied health professionals, as well as a modern approach to emancipation of the patient and lay charities.

The common feature of all these adjustments has been a need to accommodate the challenge of a contemporary technology, which, for best, had to be integrated to ensure coherent development of the specialty. Technology, as the application of science for practical purposes, must be added to the philosophical attributes of science and art in Renal Medicine; that represents a progressive three-in-one liberation from the historical academic backdrop of the specialty. To adapt the insight of Kenneth Tynan about neurosis, technology was the secret that the specialty didn’t know it had been keeping.

References

1. Finkel I. The ark before Noah: decoding the story of the Flood. 2014. Hodder and Stoughton.
2. Feest TG, Mistry CD, Grimes DS, Mallick NP. Incidence of advanced chronic renal failure and the need for end stage renal replacement treatment. Br Med J 1990;301:897-900.
3. McGeowan MG. Prevalence of advanced renal failure in Northern Ireland. Br Med J 1990;301:900-903.
4. Mallick NP et al. Provision of Services for Adult Patients with Renal Disease in the United Kingdom. The Renal Association 1991.
5. Dombey, SL, Knapp, MS. Chronic renal failure in Nottingham and requirements for dialysis and transplantation facilities. Br Med J 1975;2:484-485.
6. Dombey, SL, Knapp, MS. Prospective survey of the availability of cadaveric kidneys for transplantation. Br Med J 1975;2:482-483.
7. Berlyne GM. Over 50 and uraemic = death. Nephron 1982;31:189-90.
8. McGeown MG. Chronic renal failure in Northern Ireland 1968-70. A prospective survey. Lancet 1972;1: 307-310.
9. Pendreigh DM, Howitt LF, MacDougall AJ et al. Survey of chronic renal failure in Scotland. Lancet 1972;1: 304-307.
10. Hansard 1975 “Question July 31, 1974: Hansard PQ 2254/1974 W98 from Mr Jim Lester (Beeston, Notts): To ask the Secretary of State for Social Services what proportion of patients suitable for treatment with regular dialysis or transplantation and seen in the Nottingham Hospital in 1970 received treatment, compared with the national average for that year and how these figures compare with the most recently available?”
11. Dr Stanley Rosen, Leeds Nephrologist 1966 -74, personal communication.
12. Wing AJ. Why don’t the British treat more patients with kidney failure? Br Med J 1983;287:1157-8.
13. Audit in renal failure the wrong target? Br Med J 1981;283:261-2.
14. Author’s personal preliminary national audit, for a haemodialysis twice or thrice weekly study; panel convened by Prof G Rose.
15. Contaminated blood product scandal in the United Kingdom.
16. Will EJ. A short cultural history of the UK Renal Registry 1995-2020. BMC Nephrology 2020;21:338-345. org/10.1186/s12882-020-01997-1

Last Updated on June 21, 2024 by John Feehally