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Kidney Research UK

NATIONAL KIDNEY RESEARCH FUND – KIDNEY RESEARCH UK

The Story So Far ……….

John Feehally

The National Kidney Research Fund (NKRF) was founded in 1966 and renamed Kidney Research UK (KRUK) in 2005. It was the first, and is still the largest charity, focused on funding kidney research in the UK.

The beginning

It all started in the early 1960s. The Renal Association had been established in 1950 as the professional organisation in the UK representing those interested in the kidney from both clinical and research perspectives. By the early 1960s nephrology was emerging as a coherent clinical speciality coinciding with the arrival of maintenance dialysis and kidney transplantation as effective treatments for irreversible kidney failure. Early kidney units were almost exclusively in teaching hospitals so there were close links to academic medicine. This provided a fresh stimulus to research into clinical kidney disease adding to the substantial established renal work, in clinical and non-clinical academic centres in the UK, which was mostly focused on renal physiology.

Funds to support these burgeoning research efforts came either from money raised locally by energetic researchers or from national bodies such as the Medical Research Council, which had many other specialist demands on its resources.

The idea of a fund designated for kidney research emerged in the early 1960s promoted by members of the Renal Association who were the leading academic nephrologists of the day including Hugh de Wardener (Charing Cross Hospital), Clifford Wilson (London Hospital), Oliver Wrong (then at Hammersmith Hospital, later UCH) and Douglas Black (Manchester). In 1961 the name National Kidney Research Fund was registered, and the idea became a regular topic of discussion at meetings of the Renal Association. In 1966 these discussions turned into a specific plan:

Peter Mullen, treasurer of the Renal Association was appointed as the first administrator of the National Kidney Research Fund, with Viscount Chandos[1] and Sir Robert Platt (later Lord Platt)[2] as sponsors.  Tommy Frankland of the Abbeyfield Society became Appeal Consultant, having worked previously with the Royal Society of Medicine in the same capacity. He played a key role in drawing up a working framework for the Fund.

The launch of NKRF was held in the House of Lords on 1st November 1966, the influence of Viscount Chandos ensuring such a prestigious venue. The CIBA Foundation[3] provided accommodation in its establishment at 41 Portland Place, London W1 until the nascent NKRF acquired some funds.  In 1967 HRH Princess Alexandra consented to be patron of NKRF.

Initially NKRF remained closely linked with the Renal Association, the secretary and president of the Renal Association serving ex officio on the executive of the Fund. But within a few years this link ended, and the NKRF became completely autonomous.

Growth & Change

The charity grew from small beginnings and   went through the cycles of growth, refreshment, and internal reassessment typical of a small medical research funding charity. These cycles were largely successful but inevitably there were occasional challenges and setbacks. Although change was mostly continuous and gradual, there was an acceleration in the scale and range of the charity’s activities from the turn of the century, which represents  a step change in its ambitions and expectations.

Leadership and Officers

Peter Mullen was succeeded first by James Wellbeloved, a former Labour MP, who was appointed Director-General  of NKRF in  1984, under whom the first NKRF office was established at Lower Marsh, London SE1.  With the appointment of Leslie Rout as Wellbeloved’s successor in 1993, the  NKRF offices moved  to Huntingdon, and then in 1998 to Peterborough during the tenure of Bertie Pinchera as Chief Executive. At first in the city centre in Priestgate,  but by 2006 the expansion of the charity required larger premises, and  under Charles Kernahan a move was made to purpose-built business accommodation at Nene Hall on the edge of Peterborough, with a further move in 2020 under Sandra Currie to Stuart House, City Road, Peterborough.

 

The successive  leadership of the charity is shown in Table 1.

Table 1: Leaders of NKRF/KRUK

Date Chair Administrator later

Director later Chief Executive

Chair,

Research Grants Committee

1967-1970

1970-1974

1975-1976

1977-1980

1981-1986

1987-1990

1991-1995

1996-2000

2001-2003

2003-2007

2007-2012

2012-2015

2015-2018

2018-2024

 

Hugh de Wardener

Malcolm Milne

Stanley Peart

Oliver Wrong

Keith Peters

Peter Morris

Gwyn Williams

Andrew Rees

David Kerr

Charles Pusey

Neil Turner

Tim Goodship

John Feehally

Jeremy Hughes

Peter Mullen  (1967-1984)

 

 

 

James Wellbeloved (1984-1993)

 

Leslie Rout (1993-1999)

Bertie Pinchera(1999-2005)

 

Charles Kernahan (2005-2012)

 

Sandra Currie (2012- )

 

 

 

 

 

 

 

Peter Ratcliffe

Peter Mathieson

Fiona Karet

Richard Cornall

Jeremy Hughes

 

Donald Fraser & Neil Sheerin (co-chairs)

Andrew Lewington & Bettina Wilms (co-chairs)

 

 

KRUK governance

Starting as a small research fund largely volunteer-led, the charity has progressively moved to become a large modern registered charity with (in 2023) seventy-six full time and part time employees. These developments have been matched by the necessary gradual development of governance providing for example oversight of finance and audit, of human resources, as well as research strategy and governance.

The chair of the trustees has (until 2024) always been a senior academic nephrologist. The day to day running of the charity was initially the responsibility of a single Administrator, Peter Mullen, whose responsibilities increased progressively as the charity grew. When he retired, he was replaced by the formidable former Labour MP, James Wellbeloved[4], whose  position  was renamed Director General in recognition of the changed responsibilities. Wellbeloved proved to be a vigorous leader whose many contacts in public life enabled him to substantially increase fundraising, and to strengthen legacy giving. When he retired, Leslie Rout became the Director General (later Chief Executive) and he focused on increasing direct fund raising from the public.  He was supported  with a gradual increase in  the number of executive staff with roles for example in financial management, research funding, fundraising and business development.  In 1999 Leslie Rout left the Charity and Bertie Pinchera was appointed as Chief Executive; Pinchera positioned the charity to increase its advocacy role, notably through relationship building in Westminster.

NKRF faced one uncomfortable challenge in the mid-1990s. Anonymous concerns were raised from an individual within the kidney community   that there might be a lack of financial probity within NKRF.  Happily this was entirely refuted both by an external audit and a  review by  the Charity Commission.  Nevertheless, the increasing the scale and complexity of the organisation of NKRF required more robust financial management and  outsiders with specific business expertise were appointed to the Board of Trustees, which now assumed the role of a non-executive board and oversaw the appointment of the charity’s first Finance Director.

The demands of modern charity governance are today  reflected in the diversity of the board of  trustees which includes patients and carers, nephrologists, paediatricians, nurses, and those from beyond the clinical care community with expertise in financial management, investment and audit.

 

Research funding

Fundraising gradually expanded its ambitions and expectations. It could be regarded around the turn of the century as being somewhat ‘behind the times’. Following the appointment of Peter Storey in 2005 as Head of Community Fundraising  there was a new emphasis on the recruitment and retention of regular supporters. There was a more visible effort to position the goals of the charity through a ‘strapline’ Funding research to save lives.

The charity  also looked  increasingly  at more creative funding opportunities through trusts, and through high net worth individuals with personal and family interest in kidney disease. Success in this funding arena came from sustained relationship building with potential donors and stronger communications with donors to ensure they understand how much their generosity was appreciated and how much it achieved.

Funding partnerships were also developed with the pharmaceutical and dialysis industries, with careful protection of the various commercial and professional interests of both parties. Partnership with commercial partners had often been viewed with suspicion by medical charities, concerns being expressed that undue commercial influence could compromise a charity’s scientific and financial independence.  However, for Kidney Research UK this proved an additional substantial funding source. The proof of principle came through a partnership with the Genzyme company providing co-funding (£175,000) in 2005 for an academic-led  project focused on vascular calcification in chronic kidney disease. Great care was taken to ensure a rigorous governance structure which protected the interest of both parties.

This proved to be the first of a number of such partnerships which resulted in funding for research funding and other supporting activities. While the agreement reached with the Genzyme company provided a template, for each project specific governance arrangements were individually negotiated. Another significant early commercial partner was Amgen Ltd. which funded a cadre of KRUK training fellows from 2000 to 2003, and also supported the  annual Fellows Day and Alumni workshops from 2014 to 2019.   In recent years partnerships with smaller ‘disease specific’ charities have also proved mutually beneficial.   KRUK has partnered with  Alport UK,  the PKD Charity, and aHUS UK to fund research, with  bespoke terms agreed for  each partnership.

 

A significant measure of success in all types of funding can be seen in the growth of available funds for direct   research funding shown in Table 2. Even accounting for inflation, this shows a rapid increase in research funding especially in the last two decades, indicating the gains from the much broader recent approach to funding possibilities.

 

 

 

Table 2. Direct research funding made available by NKRF/KRUK

Year Direct research funding (£)
1969 £18,500
1977 £107,847
1985 £432,561
1990 £1.5m
1998 £2.5m
2000 £2.1m
2010 £2.9m
2015 £5.1m
2016 £5.9m
2018 £7.5m
2020 £6.4m
2022 £6.5m

 

 

 

 

 

 

 

 

 

 

Despite this encouraging upward trajectory of available funding, KRUK has always remained relatively small, able to make available for direct research funding less than 10% of that offered for example  by the British Heart Foundation or Cancer Research UK.

The increase in available funds for research has from time to time slowed, usually due to external influences.   Most notable was the impact of the global financial crash in 2008, casing a substantial downturn in investment income. A pattern of two project grant funding rounds and one fellowship round each year had by then been established, but in 2009 this  pattern   could not be financially supported to the consternation of the kidney research community which had found itself very dependent on these funding opportunities. Happily, there was gradual recovery in the value of the investment portfolio and the expected annual grant rounds were re-established.

Selection of proposals for research funding

From the beginning, NKRF provided  funds in response to proposals from UK researchers. In the early years these were always investigator-led ‘blue skies’ proposals, relevant to the study of kidney function or kidney disease but driven by the interests and expertise  of each applicant.

From the beginning NKRF recognised the importance to its credibility of objective assessment and selection of applications. At first the work of selection was almost entirely internal to the charity, undertaken by the trustees, who were almost all nephrologists. Review of grants was allocated to two designated members among the trustees,  who led discussion of the proposal, the  final funding decisions being made by the chair of the charity, who was always a well-respected senior academic nephrologist.

In 1999 there was an important change.  Andrew Rees as chair recognised   the necessity to separate the roles of charity chair and  funding allocation decision maker. Continuing as chair, he established a new and separate role of Research Grants Committee chair, a role first filled by Peter Ratcliffe.

The committee was strengthened by bringing in research scientists from beyond the immediate kidney arena.  External peer review became an even  more prominent part of the   process with several  independent (national and increasingly international) reviews being available for each application when the committee met.  The charity appointed for the first time a grants manager, Elaine Davies, and provided a proper administrative infrastructure for the Research Grants Committee, and committee membership continuously evolved to ensure expertise across the growing range of applications being received. The Research Grants Committee has since been  chaired successively by  respected senior academic nephrologists (Table 2).

Type of research funding

At first NKRF funded only 1-3 year project grants. As available funds increased fellowships were developed supporting early career investigators, both clinical and non-clinical. The Clinical Training Fellowships were modelled on the Wellcome and MRC equivalent which were well established and highly competitive.

KRUK  did not have the financial means to support larger grants, for example the five year ‘programme’ grants provided by British Heart Foundation, Wellcome Trust and Medical Research Council. Nevertheless,   it undoubtedly provided a valuable ‘return on investment’, the short-term project grants and fellowships providing ‘seed funding’ to support individuals and projects   which then made them more competitive for larger longer research support from, for example, from the Wellcome Trust or MRC.

From time to time the trustees sought reassurance that the funds provided were being well spent and productive. Most notably in 2002 the charity commissioned an independent review of the effectiveness of its research funding, establishing a Research Funding Advisory Committee, whose members were by  Charles van Ypersele (Brussels) (chair), John Feehally (Leicester, at the time NKRF Senior Medical Advisor)   Neil Turner (Edinburgh), and Christopher Winearls (Oxford). The review NKRF RFAC Report 2002 provided information on publications and follow up funding from project grants (including a bibliometric analysis) as well as career progression of past NKRF Fellows.

Alongside the  well-established strategy of  project grants and fellowships (directly funded by the charity), from 2010 onwards a new approach for KRUK  has been to fund larger scale projects to support datasets, tissue banks and other sustainable resources which can provide a substrate for successive research projects. The charity has not had the financial means to fund these alone. Funding partners have included other charities within the kidney community (for example PKD Charity, Kidney Wales, Kidney Care UK) as well as commercial partners. The rigorous approaches to financial and research governance, originally worked out for the vascular calcification project with Genzyme discussed above, have been critical to ensuring the stability and sustainability of such projects.  Examples include the UK Rare Renal Disease Registry (RaDaR), the CKD data and biobank (NURTuRE[5]), and the Alport research hub[6].

During the recent COVID pandemic, the charity worked smoothly with  partners within and beyond the kidney community to ensure fast tracking of urgent clinical trials – including  Protect-V[7] and  MELODY[8].

 

Encouraging a community of researchers

Over the last 20 years Kidney Research UK has made increasing efforts to provide a focus for those funded by its Fellowships, making this is a distinctive feature of the  ‘brand’ of the charity.

In part these developments were prompted by evidence of disappointingly low retention of good young investigators in kidney research. Non-clinical scientists  with a research interest in kidney disease may need to be opportunistic in moving to better funded areas of research, for example cancer or cardiovascular disease. And the lack of a good career path in universities   leads to many seeking alternative research opportunities in industry, or indeed leaving research altogether.   Clinical research fellows will often   return to full time clinical work after a period of full-time research funded by a fellowship, and  may be overwhelmed by the burden of clinical responsibilities and unable to sustain both a clinical and a research track in their careers.

An annual Kidney Research UK Fellows Day was established,  first held in Nottingham in 2001[9] ,  where research can be presented to peers and leaders, and a convivial but rigorous academic atmosphere allows young investigators the opportunity to appreciate better the research community to which they belong.  Other research training offerings provided for them by the charity have also proved popular.

 

Other kidney research funders

Kidney Research UK has for much of its existence occupied a well-defined niche as the only kidney organisation committed to research funding as its primary raison d’etre.

The only other organisation with an exclusive focus on research funding was Kids Kidney Research which began fundraising  as the West London Kidney Research Fund in 1973, became the Kidney Research Action Fund in 1976, and then was rebranded as Kids Kidney Research in 2006.  Kids Kidney Research later merged with Kidney Research UK (see below).

Other kidney organisations have provided some research funding. For example, the British Renal Society (BRS) for a number of years funded research with a focus on near-patient research with immediate clinical benefit.  One reason for BRS developing this approach was  the criticism that Kidney Research UK had predominantly funded laboratory-based research at the expense of research with a more direct clinical focus, which might often involve the wider membership of the multiprofessional clinical team, and that the charity’s Research Grants Committee lacked the breadth of membership to provide sound opinion on such clinically-focused proposals if they  were received. Kidney Research UK responded to this criticism from 2010 by explicit funding additional calls which emphasise clinically oriented research, and by ensuring the Research Grants Committee membership provides expertise across the whole gamut of kidney-related research.

National Coordination of UK Kidney Research

Since the turn of the century, the whole UK kidney community has sought to develop a coordinated basis for the development and governance of its research base.  One reason for this development was the growing appreciation of the value of research by the broader clinical and patient support elements of the community. Another was the 2001 publication of a National Service Framework for Renal Services for England  which explicitly emphasised the importance of research in driving quality improvement in clinical care. Kidney Research UK has worked to ensure it remains in the mainstream of all national initiatives in kidney research.

UK Kidney Research Consortium (UKKRC)

The UK Kidney Research Consortium was established in 2007 to promote clinical research in adults and children affected by kidney disease and provide a structure to promote excellence in kidney research, and to foster translational research.   Kidney Research UK played a major role in the development of UKKRC and shared its chair by rotation with the Renal Association and the British Renal Society. Within UKKRC, twelve Clinical Study Groups (CSG) were established with the remit of identifying areas where there is a clear need for more evidence, designing studies to address these areas and developing appropriate grant applications  UKKRC Clin Sci 2015 vol15 p415.

 

In 2016 it was agreed  within the UKKRC, that the time was right to develop a UK renal research strategy. One factor in that decision was a specific recommendation in  ‘Kidney Health Delivering Excellence’  (a 2013 report written by the Kidney Alliance to evaluate progress in kidney care since the publication of the National Service Framework a decade earlier). A writing group chaired by Fiona Karet included representatives of  the larger kidney stakeholders: Kidney Research UK,  Renal Association, British Renal Society, British Transplant Society, British Association for Paediatric Nephrology, National Kidney Federation, and British Kidney Patients Association.  The project management and delivery of this strategy was undertaken by Kidney Research UK on behalf of all partners, and it was published in 2016 UK Renal Research Strategy 2016. Subsequently, Kidney Research UK as the request of the UKKRC undertook  a review of progress against the UK Renal Research Strategy   published in 2019 UKRRS_progress_report_FINAL_Web_20191212

NKRF/KRUK  working with other organisations

Over the years the charity has in general worked successfully with other organisations within the kidney community, even though its focus on research may not match closely that of other organisations with  more clinical or patient-facing priorities. A minority of kidney organisations have sometimes preferred to work in relative isolation concentrating on their specific goals. But in general such partnerships have been successful with a good understanding of the mutual benefits of partnership working, and any potential for significant ‘turf wars’ have mostly been avoided by good diplomacy from all parties.

One of the most successful examples has been the partnership, and eventual merger, with Kids Kidney Research.

Merger with Kids Kidney Research 

Kids Kidney Research (KKR)was by the turn of the century a long established and successful charity entirely focused on funding research on kidney disease in children. It was providing annual research funding of c.£400,000. Discussions began about  the possibility of   KKR and Kidney Research UK working more closely together, and later about the possibility of merger. In 2012 Sandra Currie, the new Kidney Research UK chief executive, had a first discussion with  Richard Trompeter, chair of Kids Kidney Research, about the possibility of the two charities working together. This began slowly with small gestures of collaboration, for example offering  places for the KKR runners in the KRUK team for the London Marathon. Continuing conversations,  as the two charities became closer,  eventually led to a meeting in 2017 between Sandra Currie and the board of KKR, at which it was agreed to move to a formal merger.

Arrangements needed to be agreed to protect the interests and goals of the two charities. Wide ranging discussions covered issues including finances and governance, research grant rounds, data handling and digital platforms, supporter engagement, and communications. A  Memorandum of Understanding was signed in February 2017, and the merger was completed in September 2017 with acceptance by the Charities Commission.

The Kids Kidney Research  name and logo are still utilised by Kidney Research UK, which made a long-term commitment to running an annual research grant round of at least £500,000 restricted to paediatric research.  This round is partially funded from KKR reserves, partially with new funding from Kidney Research UK.  Any legacies still received for KKR are restricted for  the paediatric grant round.  To ensure proper representation of paediatric perspectives, one trustee of Kidney Research UK is always a paediatric nephrologist.

 

The merger of KKR with KRUK provides a model case study. A gradual process began with closer working, the development of trust and respect, a smooth path steered through many potential pitfalls, and eventually  a satisfactory outcome fully supported by the trustees of both charities.

‘False steps’

Any tensions between KRUK and other kidney organisations have been few over the years and have been minimised by good diplomacy. But just occasionally there have  been avoidable false steps.

Patients and the public have always approached Kidney Research UK for information, not only about research but also about their own personal health concerns.  This has from time-to-time generated tensions between KRUK and the other kidney organisations which saw themselves as having a major national patient support and education role, the National Kidney Federation (NKF) and Kidney Care UK (until recently the British Kidney Patients Association).   From the 1990s  KRUK decided to strengthen its capacity to respond to these enquiries by establishing a patent helpline, and also began to provide small welfare grants in response to patient or carer requests. With the appointment of Sandra Currie as  chief executive negotiations began with BKPA leading to a rationalisation of all these efforts. It was agreed from 2012 that the provision of patient   welfare grants  should no longer be a main focus for KRUK, that its helpline would be closed,  and these would be taken on  by BKPA. With the quid pro quo that BKPA would step back from its intention to fund a research post, instead handing the resources to KRUK to manage the post within its established  research governance processes[10] .

Another example of an unwise step was the 2006 Vascular Access Survey.  Kidney Research UK saw the potential of a partnership with the Renal Association and other kidney organisations to gather data on the challenging clinical problem of vascular access for haemodialysis, which had at that time emerged as a major quality concern in dialysis care.   A survey was undertaken of the status of vascular access in UK dialysis units.  While Kidney Research UK sought information from the survey to establish research priorities, RA expected that comparative information gathered could provide support to local renal units pushing for additional vascular access resource.  But this well-intentioned survey went awry. There had been agreement that any emerging evidence of substandard vascular access practice would be shared first with the relevant renal unit directors for   verification and for use within local clinical governance frameworks as a vehicle for change. But regrettably the communications director of KRUK at that time 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, 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.

Working with patients and for patients

Although no longer involved in patient education and welfare grants, KRUK  continued to appoint Patient Advisory Groups. In the early 2000s , there was a Scottish as well as a National Patient Advisory Group, but these merged in 2014 and it was redesignated as the Lay Advisory Committee.

The centrality of the Lay Advisory Committee’s role in shaping the KRUK strategy has grown much in recent years, reflecting a marked change across the research community in attitudes to patient and lay influence.  Evidence of proper lay participation in the development and implementation of research is now a mandatory feature of any research proposal, and a representative of the Lay Advisory Committee attends each meeting of the charity’s Research Grants Committee and Research Strategy Committee.

Advocacy, Policy & Influence

From the turn of the century, the charity widened its portfolio of activity recognising the opportunities there were to facilitate research  by ensuring that health policy makers understood the scale and range of issues facing kidney patients, and the opportunities to transform care in both the short and longer term through research.

(See UK Kidney History page on Campaigning & Politics)

Some of these opportunities came in partnership with the other kidney organisations, with varying degrees of success.

The Kidney All-Party Parliamentary Group (APPG) was established in 2000, and its first chair was the Labour MP, Madeline Moon. The prime mover was Tim Statham, chief executive at the time of the National Kidney Federation (NKF).  The NKF has remained the driving force behind the  Kidney APPG, which has undoubtedly informed and educated parliamentarians already interested in kidney disease, but it had less measurable impact than some had hoped. But Kidney Research UK has not always found it easy to influence the Kidney APPG agenda.

Kidney Alliance

Kidney Research UK was one of the five large patient and professional organisations which established the Kidney Alliance in 1988 (along with  the National Kidney Federation, British Kidney Patient Association, Renal Association and British Renal Society). It was intended as an umbrella organisation   to bring together patient and professional voices to promote high quality treatment for all patients with kidney disease  and reduce inequity. And to achieve this by working with patients, healthcare professionals and policymakers, within Government and the Department of Health, both locally and nationally. Kidney Research UK played an active role in the Kidney Alliance. Though prima facie it was a valuable coordinating initiative the founding organisations, KRUK among them, which bore the cost were not always convinced this provided  sufficient ‘return on investment’.  The Kidney Alliance ceased in 2013.

 

Health Inequalities

From the 1990s there was growing awareness  that the increasing black and minority ethnic populations in the UK had a higher incidence of kidney failure than the white population. Those with kidney failure were  further disadvantaged by the small number of kidney donors (both living and deceased) each year from ethnic minorities, reducing and delaying significantly their chance of being successfully transplanted. Many factors underlying these differences included lack of health literacy and  limited English speaking as well as cultural and religious influences.

The NKRF began with government funding a project named ABLE (A Better Life through Enablement)  focused initially on improving kidney donor rates in Black and South Asian populations in the West Midlands. In 2001 it published a position paper Preventing Kidney Disease: the Ethnic Challenge [link]  by  Liz Lightstone   which  reviewed current knowledge of kidney disease in ethnic minorities,  and made the case for   initiatives which were needed to reduce the incidence and alter the outcome of renal disease among African-Caribbean and South Asian populations.

KRUK has continued to resource these efforts with broadening approaches and increasing geographical reach. In 2006, the charity initiated its Peer Educator model which uses the natural empathy and cultural skills of lay people and patients to raise awareness in these communities. There is now accredited training for the Peer Educators to HNC or undergraduate level, and it is a well-established, evidence based[11] approach to raising awareness among at risk individuals and communities. It has now been deployed across the spectrum of kidney disease  including early detection, diabetes management,   organ donation, and end of life issues.

KRUK has recently  commissioned a recent reassessment   by Fergus Caskey and Gavin Dreyer  –  Kidney Health Inequalities in the UK  published in 2018 (link). The report underlines the importance of continuing to  document   diversity (for example through the UK Renal Registry), framing the right research questions,  and maintaining vigilance  against discrimination in care delivery.  They also emphasise that health inequalities are by no means  only among ethnic minorities but other groups, for example the homeless and those in prison, face inequality and discrimination.

International Support

Kidney Research UK has played its part in supporting the growth of renal expertise in low and middle income countries. From 2000 it has funded between two and five clinical fellows each year sponsored by the International Society of Nephrology (ISN) to come to the UK from a low resource setting for a twelve month period of postgraduate  training, before returning to their own country. From 2011 KRUK also took on the management of one additional ISN fellow funded each year by the Renal Association. This support continues to the present day, albeit restricted from time to time (for example  during the Covid pandemic, or because of visa difficulties).

 

 

 

Acknowledgements

Kidney Research UK acknowledges the many individuals who have done so much to assure the success of the charity throughout more than  half a century of work.  These include many who have been employed by the charity, and many more who have worked as volunteers, both lay and professionals, giving selflessly of their time and skills.

 

[1] Antony Lyttleton was the son of Oliver Lyttleton, who had been a cabinet minister during World War 2, and was made Viscount Chandos. Antony, the 2nd Viscount, developed kidney failure and was one of the early patients treated with regular dialysis at Charing Cross Hospital under Hugh de Wardener. The Chandos family connection continued with the 3rd Viscount (Tom) Chandos serving as President of the charity for several decades until his term ended in 2021.

[2] Robert Platt, professor of medicine in Manchester,  later President of the Royal College of Physicians

[3] The CIBA Foundation, a non-profit organisation which gave important support to nephrology in the early years. It hosted the early meetings of the Renal Association and was the venue for a meeting on glomerular disease in 1965   which proved internationally very influential.

[4] James Wellbeloved: Labour MP admired and feared for his sharp tongue and forthright views | The Independent | The Independent

[5]   NURTuRE – the first kidney biobank covering England, Scotland and Wales. – Kidney Research UK

[6] ‘Gold standard’ research hub gets to work after Manchester launch – Kidney Research UK

[7] PROphylaxis for paTiEnts at Risk of COVID-19 infecTion -V – Full Text View – ClinicalTrials.gov

[8] MELODY-PIS-v1.5-01.12.2021.pdf (imperial.ac.uk)

[9] From 2022 the Fellows Day was rebranded as ‘Driving Discoveries’

[10] This post was named the Dr. Tony Wing award (after Tony Wing, nephrologist at St. Thomas’s and later St. George’s Hospital, London)

[11] Buffin J et al. A peer outreach initiative to increase the registration of minorities as organ donors Clinical Kidney Journal; 8: 623–628

 

Last Updated on January 22, 2024 by John Feehally