Campaigning and politics

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Campaigning and politics

Government and UK nephrology have rubbed shoulders from time to time since the speciality became established in the 1960s. Over the years the relevant government organisation has variously been known as the Ministry of Health (MoH), the Department of Health (DH), the Department of Health and Social Security (DHSS), and the NHS.

  • Sometimes government has taken the initiative because issues arising in nephrology have been sufficiently substantial or concerning to require government intervention.
  • Sometimes the kidney community has pushed itself into the government’s eyeline because of concerns which seemed to be threatening the progress of nephrology
  • Sometimes these interactions have occurred through the energy of individuals or single kidney organisations; sometimes the kidney community has had a more united voice.
  • While single issues have sometimes provoked a short term effort, there have also been efforts made to establish more sustained avenues of communication and implementation.

This page gives examples in chronological order of each of these approaches.

Making haemodialysis available from the 1960s

In the 1950s when haemodialysis was an emerging short-term intervention for acute renal failure, it developed in an unregulated way. A number of academic centres obtained dialysis machines, and began to treat small number of patients with variable success.  Typical of that era, there was no funding  or regulation for this emerging new treatment, both government and clinicians waited to see if clear indications emerged from the work of the innovators.

But the arrival of haemodialysis as a chronic maintenance from the early 1960s required a different response.  Although clinical indications for its use were still being defined, it was clear that it worked (at least for some patients), that it was complex and expensive, and that there would be a growing voice among people with kidney failure and clinicians that it should be made available. Although the likely scale of these costs was not yet fully grasped, it was sure to make a significant impact on any health economy which offered it. It was also clear that costs would grow as incident patients (estimated in those early years as 30 per million population per year among those age < 60) were added year by year to the surviving stock of prevalent patients. Transplantation was also in its early stages of development, making any likely numerical  impact of transplantation on the dialysis stock  very hard to predict.

The Ministry of Health decided a plan was needed to ensure equitable access to dialysis  and provide funds for its introduction, and therefore established a working party in 1965 which Hugh de Wardener was invited to chair. de Wardener, a nephrologist, was professor of medicine at Charing Cross Hospital, and directed one of the early haemodialysis centres in the UK.  

The MoH approached de Wardener as an individual to chair its working party. Why did it not approach any professional organisation for input or advice?  The only professional kidney organisation in the UK at that time was the Renal Association, a scientific society which interested itself primarily in research, and did not at that time regard having a voice in healthcare planning as part of its remit.

More to follow on the membership and activity of the de Wardener working party.

The working party report included a recommendation for twenty regional units offering haemodialysis   to be established across the UK,   which would initially receive central funding.

The twenty would include all those centres already active, and also cover the population appropriately required new units in places lacking any expertise or experience. One such was Cardiff.  At the time Netar Mallick was SHO in the professorial medical unit in Cardiff the early 1960s. As a medical student he had done studies in Boston, USA on the first extracorporeal circuits for open heart surgery; and as a house surgeon in urology at Manchester Royal Infirmary became involved in the first haemodialysis there using a Kolff dialyser.

Mallick recalls how things developed: One day a woman called Dr. Dennis, from the Department of Health, came to see Professor Scarborough (the  professor of medicine in Cardiff,  a haematologist) and said they wanted to put one of the twenty  renal units they had decided to develop across the UK in Wales, and the Cardiff professorial unit was the obvious place for it. Now, I think Scarborough blanched at the thought. So he came to me and said ‘Will you sit on the committee for me because  I haven’t a clue?’ And I said yes. So, I think I was 28 or 29 years old and I went and sat on Hugh de Wardener’s committee, and became involved in that way. Then I did all the planning for the renal unit in Cardiff, and they offered me a consultant job to run it. But I said ‘I don’t know enough. I know how to run a  kidney machine (I’d been running the service for a couple of years) but I don’t know very much about kidneys. They said, ‘Well, you either accept the job, or we have to get somebody else to do it’. And I said, ‘I’m not going to do it’, which was a spectacular miss really.

 By 1970, 400 patients across the UK were under treatment. But this growth was not maintained for  various reasons, notably the impact of hepatitis B.

Hepatitis B in dialysis units

From 1965 there were outbreaks of hepatitis in dialysis units . The first and among the most severe was in Manchester, other major outbreaks included Edinburgh and Guy’s Hospital, London. The consequences were very severe – there were both patient and staff deaths, several units closed to new referrals, and some nephrologists feared that the expansion of haemodialysis, making such good progress since the de Wardener report, might be permanently stultified.

It gradually became clear that these outbreaks were due to blood borne transmission of Hepatitis B. The outbreaks began round the time that HBV was first identified as a distinct pathogen (first known as Australia antigen), its biology was being investigated, and then clinical testing became available.

Government decided it need expert advice and recommendations about necessary approaches to contain such outbreaks and ensure dialysis units could be safe places.  It established an advisory group to DHSS, Scottish Home and Health Department and the Welsh Office. Lord Rosenheim, consultant physician at University College Hospital, London (and future President of the Royal College of Physicians) chaired the committee, membership including physicians, surgeons, a ward sister and a matron.  The committee produced a set of recommendations aimed to minimise the spread of hepatitis, which to this day remain the basis for the universal precautions practised in dialysis units. 

The slow growth of dialysis capacity – making the numerical case

Although maintenance haemodialysis ‘survived’ as an accepted treatment modality after the Rosenheim Report, its expansion remained abjectly slow throughout the 1970s and 1980s.

There was no real breakthrough until the early 1990s when a small group of leading nephrologists (Netar Mallick (Manchester), David Kerr (Newcastle), and Mollie McGeown (Belfast) -past, present, and future Presidents of the Renal Association)   – achieved a meeting with the Secretary of State for Health,  and were able to present a convincing case for treatment to be provided for a minimum of 80 new adults age <65 years per million population per year, which then became DH policy. A key to their success was that for the first time they had peer-reviewed published data supporting the population treatment target.

Treatment for children was however not included in this discussion, and there were further struggles before paediatric renal replacement therapy became properly funded.


A voice for nephrology within government

During Netar Mallick’s tenure as President of the Renal Association accepted it had a role as an influencer of health policy, and a promoter of the need for development of specialist kidney care. Mallick became increasingly influential in his continuing interactions with Government ministers and senior civil servants, notably Norman Halliday, who was the DH lead for renal services.  These developments culminated in DH recognizing the need for more   structured specialist advice, and Mallick was appointed in 1991 as the first Government Advisor on Renal Disease.

Government requirements for rationalisation of renal services

Following the de Wardener working party recommendations, government had chosen to leave renal services to develop in each locality without explicit central direction. Although much too slow to meet all demand, service developments were largely following sensible pragmatic lines, populations without sufficient access to renal care being served by new units developing in regional centres with academic links. A number of ‘hub and spoke’ models were also emerging, although some of these in retrospect seem rather centrist in approach, still expecting patients to travel large distances to regional centres rather than being able to access care more locally.   The government had however established the UK Transplant Service to facilitate matching for cadaver kidney transplant. And the successes of transplantation (contrasted with the challenges of dialysis) were emphasized in a 1977 government film ‘Renal Failure – the Challenge’ made by the Central Office of Information (link).

 A National Service Framework for Kidney Care

The election of the New Labour government in 1997 brought   a substantial increase in funding for healthcare, but with it came new structures and government expectation for service transformation.  One vehicle to drive change was the development of National Service Frameworks (NSFs)   intended to describe an ideal specialist service which in turn would be a benchmark against which each health economy could judge its progress towards ‘world class care provision’.  Development  of an NSF for Renal Services,  was initiated by DH in 2000, and Robert Wilkinson (Newcastle) was the nephrologist appointed as its first chair, succeeded  by Donal O’Donoghue. The NSF was eventually published in two parts in 2005 (link to NSF documents to follow).

The kidney community put a large amount of effort into the production of the NSF. It was recognized that even if the investment needed for full implementation of the NSF would never be forthcoming, there was nevertheless an opportunity to educate the many health service managers and civil servants who had transitory attachment to the kidney world, and often were ill-informed about its breadth and complexity. In retrospect the true impact of the NSF is hard to measure.

 National Clinical Director

As well as NSFs, another new government initiative in the late 1990s   was the appointment of specialty National Clinical Directors (soon known colloquially as ‘tsars’). A National Clinical Director (NCD)  for Kidney Care for England at the Department of Health was created in 2006, and Donal O’Donoghue became the first ‘renal tsar’, a role he held until 2013. This part time role was conceived as advising the government on the development of kidney care in a resource-limited NHS, and provided a much needed interface between government, the civil service  and clinical leadership. O’Donoghue’s tenure was marked by a major expansion in the UK’s RRT services and the nephrology workforce. He also advocated energetically for chronic kidney disease (CKD), ensuring it was properly understood across the health community as a major non-communicable disease. With other enthusiasts he helped create a mandate for all UK clinical laboratories to routinely report estimated GFR (eGFR) alongside serum creatinine values. He rode the criticism that this would be misunderstood and drive unnecessary referral to nephrologists, especially among older people with CKD, and a transient surge of referrals settled with evidence of reduction in the high rates of emergency presentation of undiagnosed end-stage kidney disease.  He then turned attention to the emerging evidence of suboptimal clinical care for people with acute kidney injury (AKI), driving the introduction of mandatory real time digital reporting to clinicians of suspected AKI among in-patients, and championing the extensive education needed across the health community to drive improvements in AKI care. In 2013, the NCD role was reconceived by DH with less time and funding allocated, and O’Donoghue was succeeded by Richard Fluck (Derby). NCDs inevitably walked a fine line and sometimes  attracted criticism from some who  saw them as too closely aligned to government health policy and the civil service and therefore unable to protect and promote the needs of kidney care. But the NCDs have generally been highly regarded within the kidney community as successfully providing meaningful opportunities for kidney care to make real progress.

Making the ‘kidney voice’ heard

The National Clinical Directors and the NSF are examples of the kidney community finding its voice from within the established government structures. During the same period the kidney community was seeking ways for its voice to be heard from outside government.

There was now a plethora of organisations representing both kidney patients and professionals. While individual organisations sought a campaigning voice through which to emphasise their own priorities, it was realized that single concerted voice could be more influential. Two approaches to this were the establishment of an All-Party Parliamentary Kidney Group, and the formation of the Kidney Alliance.

The All-Party Parliamentary Kidney Group

All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are intended to be run by and for MPs and peers, who may choose to involve individuals and organisations from outside Parliament in their administration and activities.  In practice it is almost always the outside organisations and individuals whose advocacy  seeks out MPs and peers to propose and then support an APPG. The All-Party Parliamentary Kidney Group was established around 2000, and its first chair was by the Labour MP, Madeline Moon. The prime mover was Tim Statham, chief executive of the National Kidney Federation. Statham had previous working experience as a political party agent and civil servant, and saw the potential to inform parliamentarians and gain their support for the kidney cause in debates in both chambers, in parliamentary committees and more informally across Westminster. The NKF has remained the driving force behind the  Kidney APPG, now chaired in 2023 by the Conservative MP Laura Farris MP. It has undoubtedly informed and educated parliamentarians already interested in kidney disease, but it had less measurable impact than some had hoped. Other kidney organisations than NKF, which are also committed to patient advocacy, have not always found it easy to influence its agenda.

Kidney Alliance

The Kidney Alliance (KA) was established in 1998 as an umbrella organisation intended to bring together the patients’ voice and professionals committed to kidney care. The five largest patient and professional organisations were among its founders:  the National Kidney Federation, Kidney Research UK,  the British Kidney Patient Association, the Renal Association and the British Renal Society. The voice of the Kidney Alliance was intended  to promote high quality treatment for all patients with kidney disease  throughout the country reducing inequity. Achieving this by working with patients, healthcare professionals and policymakers, within Government and the Department of Health, at the national and local level. While the Kidney Alliance was prima facie a valuable coordinating initiative, its approach was sometimes contentious. The cost of its secretariat and activities were borne by its larger member organisations, which did not always see sufficient ‘return on investment’ to satisfy them. It was also felt by some that the Kidney Alliance’s approach was sometimes more combative than necessary. For example the Kidney Alliance at one point claimed that the NHS intended not to publish the NSF, and it was only the Alliance’s own vigorous campaigning which forced them so to do; whereas others involved more directly in the preparation of the NSF were confident that the delays were merely transient, caused by government  bureauocracy, rather than retrenchment. The Kidney Alliance did take on a valuable role in ensuring that World Kidney Day (founded by the International Society of Nephrology in 2005 and kept annually on the second Thursday of March) was used as effectively as possible as a national focus for promoting kidney care. The Kidney Alliance ceased in 2013.

The NHS National Programme for IT

In the early 2000s the governments major investment in digital health informatics, the National Programme for IT (NPfIT) emerged. It was much heralded, ill-conceived and expensive, and floundered badly. The interactions of NPfIT and the kidney community were not comfortable. At the time renal informatics was becoming well established in the UK, and the   kidney community was at the forefront nationally of clinical health informatics It was soon clear that NPfIT represented some threat to the renal community’s own IT excellence. Firstly because the investment in NPfIT appeared to be stultifying any local IT investment in the NHS, where renal units were continually seeking resources to improve and maintain their IT support. Secondly because it was soon clear that NPfIT was struggling to produce its much-vaunted electronic patient record (EPR) which   despite NPfIT’s  optimism  was not in the foreseeable future going to replace the  renal clinical information systems and EPRs already in place or being established locally in many renal units. Another concern was that in its heyday some at NPfIT were optimistically suggesting it would make redundant the UK Renal Registry. The overconfident assertion was that NPfIT would soon be collecting routine data of sufficient granularity across the NHS sufficient that the Registry would simply be provided with a complete data feed to interrogate. NPfIT soon retreated when they understood the complexity of the dataset used by the Registry and the extensive data cleaning it required. The high  costs and many delays of NPfIT in due course reached the agenda of the House of Commons Health Select Committee, and representatives of the renal community not only made written submission, but were among those able to give it voice at Select Committee’s hearing (Hansard 2007 – in RA Archive, Wellcome Library).

National Confidential Enquiry into Patient Outcome and Death (NCEPOD) and investigation of AKI

Another campaigning approach which has sometimes proved valuable to the kidney community is to engage opportunistically with ‘arms length bodies’ in the health arena.  One successful approach involved the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) which regularly invites proposals for topics to include in its regular programmes of case review and advice. In 2006 the Renal Association saw an opportunity to gain ground in the struggle to make the broader health community more aware of the clinical challenges of acute kidney injury and to find ways to drive investment to improve care. A proposal was put to NCEPOD to make an evaluation of outcomes of AKI cases admitted to English hospitals.  The proposal was accepted and the output was the NCEPOD 2009 Report:  ‘Adding Insult to Injury’ . The report proved an important trigger for the recognition by the NHS of AKI as a substantial and often avoidable problem. This in turn led to initiatives including education for primary and secondary care, and the now ubiquitous  ‘early warning’ systems based on routine data extraction from hospital clinical laboratory testing.

The 2006 Vascular Access Survey

While  the kidney communities campaigning efforts have mostly been well executed and effective, there have been occasional mis-steps. The 2006 vascular access survey caused some difficulties. Vascular access for HD continued to be the Achilles heel preventing the consistent delivery of high quality dialysis. Despite many efforts local renal units were still struggling to corral sufficient resource – particular vascular access surgery and interventional radiology – to optimise vascular access. A joint initiative of RA and KRUK in 2006 developed a vascular access survey focused on outcomes and capacity, to be sent to all UK renal unit clinical directors. For KRUK, as well as supporting the clinical community, this was an opportunity to identify research priorities in the vascular access arena. At the same time a new vascular access society had just been established, and its energetic leader, Ali Bakran (transplant and vascular surgeon, Liverpool, 1949-2010) joined the planning discussions for the vascular access survey.  It was thought that consensus had been reached for a single vascular access survey to be sent to clinical directors, but Bakran preferred a separate survey from the Vascular Access Society, which reached clinical directors just before the RA/KRUK survey went out. Fearing ‘questionnaire fatigue’ the RA President, John Feehally, sent a rather heavy handed communication  to clinical directors asking them to ignore the Bakran survey and give time and energy only to the RA/KRUK survey.  Happily clinical directors ignored this advice and almost all found time and energy to complete both surveys. Regrettably the use of the RA/KRUK survey results then went awry. There had been agreement that any emerging evidence of substandard vascular access practice would be shared first with the relevant renal unit clinical directors for  verification and for use within local clinical governance frameworks as a vehicle for change. But regrettably the communications director of KRUK  took it upon himself to write directly to the MPs in whose constituencies poor vascular access practice had been identified, but not yet verified.  There was understandable ire  among the clinical directors whose services had been ‘outed’ as of poor quality without an opportunity to check the information, and among  the RA leadership who had given specific assurances to clinical directors about how the survey data would be managed. KRUK moved promptly to discipline and then dismiss the director concerned, and good relations were soon restored. Importantly the survey results, once verified and appropriately used, did indeed prove valuable in strengthening local efforts to increase resources for vascular access.

Last Updated on February 7, 2023 by John Feehally