By the 1980s there was no longer any doubt that renal replacement therapy for end-stage renal disease had come to stay in the UK.
The emerging speciality of nephrology had passed through the initial optimism of the 1960s when it became clear that chronic dialysis was challenging but possible. The Department of Health accepted the recommendation of its working group chaired by Hugh de Wardener (established in 1965) to establish a network of twenty dialysis units across the UK, and there was growing optimism. But these developments ‘hit the buffers’ for several reasons including the woeful lack of funding in the UK for healthcare in general, and the fatal hepatitis B outbreaks in several renal units from 1966 to 1971 which not only halted progress in the affected units, but cast a much wider pall over prospects for the development of hospital-based haemodialysis (HD). The Department of Health honoured the plan for twenty units, but did not support any further expansion.
Although kidney transplantation in the UK developed well through the 1970s, the UK fell behind most high income countries in provision of sufficient HD. There was very slow expansion in the number of consultant nephrologists and few new units opened. Incident treated patients per million population remained very low compared to the rest of Europe, and even more so compared to the United States. In the UK take on was little more than 40 per million per year, compared to twice that number in much of Europe, and almost four times that number in the United States.
The situation was undoubtedly unsatisfactory. Renal units were restricted almost exclusively to academic centres. In 1980 there were still only 40 centres in the whole of the UK offering haemodialysis (both at home and in-centre) staffed by one or more consultant nephrologists, of which 10 were in London (22 in the rest of England, 4 in Scotland, 3 in Wales, 1 in Northern Ireland). Many of these centres had no satellite HD units, some but not all provided outpatient clinics in smaller hospitals within their catchment area, but there were no in-patient nephrology beds outside the teaching hospitals. Thus many patients had very long travel times for outpatient or inpatient nephrology care and for maintenance dialysis. There were still fewer than 80 consultant nephrologists in the whole of the UK, with no coordinated plan for expansion of consultant numbers in existing centres, let alone for establishing new centres. Nor in many regions were there plans for an effective ‘hub and spoke’ model of kidney care, to provide at least some services nearer peoples’ homes.
Nephrologists were continually managing their workload at the edge of what was possible. Beds were somehow found for referrals even when there were apparently none. Renal patients were frequently outlying in other medical wards, and nephrologists were often less than popular with other specialists who regarded them as relentlessly acquisitive of sparse resources and facilities across medical units.
Presumptions and accusations about rationing of RRT in the UK became increasingly strident in global nephrology circles. The very slow growth in incident patient numbers seemed to confirm that RRT was being rationed. How was that happening? It is true that nephrologists were varied in their practice and some emerged only gradually from the early culture in renal units that those accepted for dialysis would be young non-diabetics suitable for home dialysis and suitable for transplantation. This indeed had been the selection process established in the first chronic dialysis programme in the world, led by Belding Scribner in Seattle, USA. And the same approach was used in the first UK HD centre led by Stanley Shaldon at the Royal Free Hospital, and the other UK centres which soon followed. In the 1960s and 1970s few centres were willing to treat diabetics (among the earliest the King’s unit led by Victor Parsons). Gradually those early criteria were being relaxed and nephrologists were accepting onto dialysis more and more individuals who they were confident would benefit from treatment, including older people and those with diabetes and other multisystem diseases. Among patients who came through primary and secondary care to reach renal units, nephrologists were now turning down individuals based on clinical criteria, rather than fixed criteria such as age.
But there are other factors which facilitated rationing. GPs were inevitably not always well-informed about the emerging use of RRT, so referred few people with renal failure to hospital. Their medical training had taught them renal failure was fatal, and they might well make clinical judgments, especially in older and frailer people that terminal care could best be delivered at home without involving secondary care. Physicians in district general hospitals would in turn refer few people on to renal units, based on their knowledge of earlier more restrictive approaches to patient selection. Nephrologists were not heavily engaged in offering education to primary and secondary care to bridge the knowledge gap – it was all they could do to cope with the clinical cases that were ‘beating down the doors’; the notion of going out to seek work seemed far-fetched. Geography was another influential factor, confirmed by demographic study of referral patterns. Knowing that a likely outcome would be hospital attendance in perpetuity for twice or thrice weekly dialysis, GPs and hospital physicians were much more likely to refer someone who lived in an urban setting just a few miles from a renal unit, compared to someone living fifty or a hundred miles away in a rural area with slow roads.
But even if referral rates did not change, an increase in the size of the prevalent population requiring RRT was inevitable, and would be pushed further as increasing clinical experience improved patient survival on dialysis. This aspect of the challenge for renal units was little discussed in the literature before the 1980s. How could it be contained?
The first ‘release valve’, in play from the very beginning of chronic haemodialysis) was the use of home haemodialysis. Indeed the expectation that anyone accepted onto HD would be able to transfer to home care was at the core of all early dialysis programmes; in the late 1970s more than half the patients on chronic HD in the UK were dialysing at home. While a suitable treatment for some patients, home HD failed to provide a sustainable ‘buffer’ to control the relentless growth of demand for hospital HD. Increasingly those referred to renal units could not undertake home HD for a whole series of social and physical reasons, and with time the burden of home HD on patient and family meant that those who could not be transplanted were sooner or later moving back to dialyse in hospital. And it was not long before some units had no choice than offer inadequate twice weekly dialysis rather than leave some people untreated.
The second ‘release valve’ for overcrowded dialysis units was an effective kidney transplant programme. Transplant was developing in parallel with the growth in dialysis from the 1960s onwards, although not always in the integrated fashion familiar to those who work in 21st century kidney care. Some units realised this, and from the outset became vigorous transplanters as well as dialysers. The exemplar was the unit at Guy’s Hospital (led by Stewart Cameron and Chisholm Ogg with transplant surgeons Frank Ellis and later Michael Bewick) which by 1976 had already done 1000 transplants (820 deceased donors, 180 living donors). Improvements in graft survival were incremental and hard fought through the 1960s and 1970s, and a substantial number of those transplanted were returning to dialysis as the transplant failed. The availability of cyclosporin (and later other calcineurin inhibitors (CNI)) led to a ‘step’ improvement in transplant survival from the late 1970s onwards, but did not entirely mitigate the pressure on dialysis facilities from returners with graft failure, not least because of the impact of CNI nephrotoxicity. The lower maintenance costs year on year for a successful kidney transplant (after an initially high cost first year) were of course very attractive politically and facilitated government investment in approaches designed to increase transplantation rates.
The third ‘release valve’ was peritoneal dialysis. A minority of nephrologists thought PD was a second best chronic dialysis modality (Stanley Shaldon pungently stated that ‘PD was a second treatment for second class patients delivered by second class clinicians). But most saw that PD had a major role, particularly at the onset of ESRD when there was still some residual renal function. However, as intrinsic renal function and peritoneal membrane function were lost with time, there was less prolonged technique survival compared to HD. From the late 1970s CAPD became available and was initially offered on the basis of patient preference. But very soon the failure to achieve timely growth in centre HD facilities meant that many patients had no choice: it was PD or nothing. By the mid-1990s 30% or more of those on dialysis were treated with PD in many units; compared to a general view that in the context of unrestricted patient choice that would be nearer 10-15%.
Early criticism about UK rationing from those beyond the UK often focused on diabetic kidney disease. The fearsome burden of both macrovascular and microvascular complications in most diabetics reaching ESRD had deterred early nephrologists from offering them the opportunity of dialysis. In the UK the King’s unit led by Victor Parsons was the first unit to take on diabetics, and by the 1990s most UK units were accepting diabetics in significant numbers. But there was still a lower prevalence of diabetic kidney disease as the cause of renal failure in incident patients in the UK compared to the USA and many others in Europe. Lively debates at international meetings polarised: there was the presumption of some that the UK was still rationing dialysis for diabetics, but denying it. In response UK nephrologists would point out reasons why the UK had fewer diabetics requiring RRT, since the NHS was able to offer better organised care for diabetics in the early years after diagnosis than many other countries resulting in better diabetic control and a reduced risk of microvascular complications including diabetic kidney disease.
And what about age? There was no doubt that early nephrologists were cautious in offering dialysis to many older people when there was uncertainty how the treatment would be tolerated. But as age restrictions were relaxed, it was not long before it became a badge of honour to proclaim the age of the oldest patient on each dialysis unit, and not much longer before accusations of ‘agism’ were being heard if dialysis was not offered to frail elderly people. Regardless of the absolute incidence of ESRD in each decade of life, the important questions of course were the proportion who would benefit sufficiently in quantity and quality of life by being established on dialysis.
The fourth ‘release valve’ on the prevalence of dialysis therefore has been the more formal organisation of both shared decision making about the introduction (and withdrawal) of dialysis, and of conservative kidney care for those who will not be receiving dialysis.
Taken together all these changes have coincided with a plateau in the incidence of ESRD in the UK, between 140 and 150 pmp per year in the decade to 2020. Most units have a few patients at or close to 100 years old, but many others in the ninth and tenth decade are on non-dialysis care pathways. All this has led to growing confidence in the kidney community that almost all who should be offered RRT are now receiving it.
This is encouraging but does not gainsay that almost all health communities in the UK have continuing concern that facilities and resources for kidney care have not kept up with the quality care that patients rightly expect. Lack of centre HD facilities has always been the focus of these difficulties – often resulting in patients travelling long distances from home for maintenance treatment, or being undertreated (twice weekly HD). Those who live in the city close to the parent unit is based are usually better served. Even the available facilities have been inadequate, not conforming to the requirements to minimise risk of blood borne virus transmission, let alone respecting the environment and facilities needs of patients who must attend such a facility thrice weekly, attendance which is often lifelong.
Most health communities continue gradually to resolve these issues through relentless patient and professional advocacy. In some the problems have become intractable without central decision making and investment to manage change. A good example is the Greater Manchester Renal Review which led on to the Greater Manchester Managed Clinical Network, the first of its kind in England (though preceded by such work in Scotland).
A unique problem required consideration in London. In the 1990s it still hosted no fewer than twelve medical schools (there were only another 12 medical schools in the rest of England). Each had developed its own renal unit, and ten of the twelve also offered kidney transplantation. A rationalisation of resources for kidney care in London was addressed by the London Implementation Group which made a wide ranging review of specialist services across the city. More to follow
There were also more prolonged discussions about the perceived excessive number of transplant centres across the UK. These exposed tensions between on the one hand those concerned that access to transplantation was uneven, often disadvantaging those who lived further from the transplant unit which provided their care; and on the other hand a view that more centres each doing fewer transplants was not only cost ineffective but had poorer outcomes. In 1983 the British Transplantation Society reported on this so-called ‘centre effect’ (Renal Transplantation in the United Kingdom & Ireland. The Centre Effect. A BTS Report, 1983). A gradual reduction in the number of transplant centres followed, but through local consensus rather than national policy, and the twenty centres in the UK offering kidney transplantation are now unchanged since the turn of the century. Local kidney communities have instead focused on bringing transplant services (particularly assessment and follow up clinics) closer to patients’ homes.
Workforce
From the 1990s onwards there was as last a growth in the number of consultant nephrologists in the UK. Not a growth in numbers to match the workforce being established in most other European countries, but nevertheless an increase which made it possible to care for the rapidly increasing prevalent population of those receiving RRT. This was not a consequence of coherent national planning although a series of workforce documents were produced from within the speciality which defined the number required based on a maximum number of RRT patients which should be cared for by one consultant (link). Rather local new consultant appointments reflected pressures created by expanding HD facilities. But it was well into the 21st century before it became common for the opening of any new satellite HD unit to be obligatorily accompanied by one or more new consultant appointments.
Last Updated on April 5, 2023 by neilturn