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REVIEW OF THE YEAR

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DR ALISON BROWNHONORARY SECRETARY THE RENAL ASSOCIATION

www.renal.org

ANNUAL REPORT 2017

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RENAL ASSOCIATION ANNUAL REPORT 2017

CONTENTS

EXECUTIVE COMMITTEE, OFFICERS AND TRUSTEES 3

WELCOME FROM THE PRESIDENT 4

REVIEW OF THE YEAR 6

ACADEMIC AFFAIRS REPORT 8

CLINICAL VICE PRESIDENT’S REPORT 10

UK RENAL REGISTRY REPORT 12

BAPN REPORT 14

TREASURER REPORT 16

AWARDS AND BURSARY WINNERS 18

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TRUSTEES

President Prof Donal O’Donoghue

President Elect Dr Graham Lipkin

Past President Prof Bruce Hendry

Honorary Treasurer Prof Neil Sheerin

Honorary Secretary Dr Indranil Dasgupta

Academic Vice President Prof Phil Kalra

Clinical Vice President Prof Paul Cockwell

BAPN President Dr David Hughes

EXECUTIVE COMMITTEE (ELECTED)

Dr Aine Burns Dr Peter Hewins

Dr Andy Stein Dr Richard Haynes

Dr Marie Condon Dr Tim Bowen

Dr Mark Brady Prof Alan Salama

EXECUTIVE COMMITTEE (EX OFFICIO)

British Association for Paediatric Nephrology (BAPN) Honorary Secretary Dr Yincent Tse

Kidney Care UK Ms Fiona Loud

Chair of NIHR CRN Renal Disorders Group Prof Phil Kalra

Chair Renal Dialysis and Transplant Clinical Reference Group Dr Richard Baker

Chief Executive UK Renal Registry Mr Ron Cullen

Co-Chair Renal Scientist Working Party Dr Mark Dockrell

Co-Chair Renal Scientist Working Party Dr Gavin Welsh

Green Nephrology Dr Andrew Connor

Medical Director UK Renal Registry Dr Fergus Caskey

National Kidney Federation Mr David Marshall

President British Renal Society Prof Maarten Taal

Renal Association Communications Officer Dr Jim Moriarty

Representative for Non Consultant Grades Dr Yook Mun Woo

Representative for Northern Ireland Prof Peter Maxwell

Representative for Scotland Dr Paddy Mark

Representative for Wales Prof Aled Phillips

Society of District General Hospitals (DGH) Representative Dr Mick Kumwenda

Specialist Advisory Committee (SAC Renal Medicine Chair) Dr Mark Andrews

Specialist Registrar (SpR) Club Representative Dr Fiona Duthie

EXECUTIVE COMMITTEE (APPOINTED)

Clinical Data Standards Committee Chair Dr Afzal Chaudhry

Clinical Practice Guidelines Committee Chair Dr Mike Robson

Clinical Services Committee Chair Dr Katie Vinen

Education & Training Committee Chair Prof Aine Burns

Equal Opportunities in Nephrology Committee Chair Dr Bhavna Pandya

International Committee ChairProf David Goldsmith Prof Iain Macphee (From Sept 2017)

Interventional Radiology Group Prof Aine Burns

Patient Information Committee Chair Dr Rebecca Suckling

Patient Safety Committee Chair Dr Katrin Jones

PatientView Dr Afzal Chaudhry

Rare Disease Committee Chair Dr Detlef Böckenhauer

Research Committee Chair Dr Jill Norman

EXECUTIVE COMMITTEE OFFICERS & TRUSTEES

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PROF DONAL O’DONOGHUE

WELCOME FROM THE PRESIDENT


The Renal Association guidelines received National Institute for Health and Care Excellence (NICE) evidence reaccreditation in January 2017. Since then guidelines on Post-Operative Care of Kidney Transplant Recipients and Peritoneal Dialysis in Adults and Children have been completed, are on our website and are in publication with BMC Nephrology. Additionally, our close collaboration with the Association of British Clinical Diabetologists has resulted in a joint guideline on treatment in Diabetic Nephropathy.

In March the first edition of the European Nephrology Certificate was held. The Renal Association has overall responsibility for coordinating the activities of the joint European Union of Medical Students (UEMS), RA and Federation of Medical Royal Colleges Examining Board, Standard Setting Group and Question Writing Group to ensure that all the academic objectives are met. Fifty seven colleagues sat the examination which was greater than anticipated. Education of course doesn’t end at certification. Rather that is the beginning of a lifelong career of learning and rewarding practice. The continuing professional education high point of the year was again UK Kidney Week®, which we held in partnership with the International Society of Nephrology and the British Transplantation Society (BTS) at the Liverpool Conference centre in June. This joint meeting was a great academic and professional success. It was well attended with 750 delegates; there was an excellent and well received programme and our named Renal Association lectures were again highlights of the meeting. I am particularly pleased by the enthusiasm and support the Renal SpR club chaired by Fiona Duthie gave UK Kidney Week® 2017.

The better our understanding of the kidney, mechanisms of disease, treatments and reasons for individual patient responses the better we are able to prevent, delay and mitigate the impact of kidney disease on patients, families and populations. The UK Renal Research Strategy was launched with our partners in the UK Renal Consortium in April 2016. The then Minister for Life Sciences, George Freeman MP heralded it as “ambitious yet realistic”. The launch celebrated the end of the beginning and pre-staged the ongoing work in 2017 lead by Prof Kalra, our Academic Vice President (AVP) and chair of the UK Kidney Research Consortium

(UKKRC) on behalf of the Association and our co-lead organisations – Kidney Research UK (KRUK) and the British Renal Society (BRS) to deliver the four strategic research aims and thirteen detailed recommendations. In the words of Minister Freeman “kidney care is an area that historically has been somewhat neglected and the strategy provides an invaluable starting point from which we can ensure that the UK’s kidney health sector is now recognised as a global beacon of excellence”.

The purpose of asking and answering research questions and then of disseminating resulting knowledge and understanding is to reduce the burden of kidney disease and to improve the experience of care and outcomes for people with kidney disease. To do this, knowledge needs to be synthesised. Our Renal Association Clinical Guidelines group lead that process and articulate the basis of good clinical practice, many of the elements which are measured, analysed and reported by our Renal Association UK Renal Registry (UKRR). Writing and disseminating guidelines and reporting key measures of renal unit performance have been core functions of the Renal Association for several decades. The UK Renal Registry is of course now a successful research engine in its own right with an impressive research programme track record and portfolio of projects. Increasingly we recognised that delivery of reliable high quality care requires quality improvement capability as well as evidenced based guidelines. The Kidney Quality Improvement Partnership (KQuIP) the Renal Association has assembled with the other professional and patient organisations resulted from that understanding. The Partnership has done a great deal in identifying national kidney care priorities. I am pleased to be able to report that the Renal Association has agreed funding and resources of nearly £450,000 over the next 3 years, helping to build the capacity and capability of our local and regional renal communities and networks to enhance quality improvement knowhow and drive improvements in care and outcomes for kidney patients.

In the past year we have seen a steady growth in our National Registry of Rare Kidney Diseases (RaDaR), which now covers over 35 rare renal conditions, has over 16,000 patients registered and is open to 90 hospitals and patients. Similarly PatientView (PV), allowing our patients access to their electronic patient record

The triple aim of the Renal Association (RA) to promote and disseminate research, to provide education and development for renal healthcare professionals and scientists and to lead continuing improvement in the delivery of reliable evidenced based care for patients and families affected by kidney disease remains as relevant today as it did when the Renal Association was formed in 1950. We exist as a professional body to support our members building networks and partnerships to design and deliver this triple aim. Judged against these ambitions 2017 has been a successful year on all fronts. We continue to align our activities to our charitable objects of supporting learning, promoting research and improving service delivery through a greater understanding of the kidney, kidney diseases and their treatments.

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continues to thrive. The Patient Information Committee continue to work closely with Kidney Care UK to develop material that has been awarded the information standard and supports the National Kidney Federation in the maintenance of their large library of patient leaflets.

The Association successfully transferred our secretariat support arrangements in house on time and within budget without major disruption or loss of business continuity in 2017. We have now begun to build on that success to achieve synergies across the whole organisation to improve our products and services and provide higher value to our members and the wider kidney community. To support our organisational development the Association commenced a comprehensive governance review in 2017. Recommendations and action planning will clarify the roles and responsibilities and interrelationships between the various components of the Association; the formal duties of trustees, expectations of management colleagues and volunteers; define delegated authority and where appropriate consider operational arrangements.

A number of organisational changes to comply with the Charity Commission directives and best practice have been introduced to strengthen decision making, oversight and assurance processes.

There is closer working with the Renal SpR Club and broader engagement with our trainees, evidenced by a significant increase in new trainee members over the last twelve months and greater involvement of trainees in the planning and delivery of UK Kidney Week®. Attracting trainees into renal medicine, supporting them through training, in out of programme experience and encouraging their participation in the community through the Association is a key priority.

A refresh of our strategy is planned to support our incoming President, Dr Graham Lipkin. This will assist in determining priorities, setting goals and business planning during 2018-2020. Graham will be leading this process. The opinions and views of the Association Executive and Membership will have a central role in priority setting. Looking forward it’s clear this is going to be a busy period building our internal systems, capability and capacity; ramping up communications, marketing and member engagement; developing new alliances with other professional societies; supporting regional quality improvement through KQuIP and sustainability of renal services and continuing to deliver the UK Kidney Research Strategy.

The Association has established regular meetings between our trustees and BRS officers to consider ways of closer working, coordination on areas of mutual interest and synergy.

These discussions with BRS have resulted in agreements in principle to regularly co-host UK Kidney Week® and to reach an equal risk benefit relationship by 2020.

Corporate engagement in 2017 was strong and resulted in significant support for UK Kidney Week® in Liverpool last year. The Renal Association Corporate Day in October was well attended and newer models of engagement, partnership and possibly tiered RA corporate membership were suggested. There appears to be considerable appetite for closer working between industry and the Association on specific projects.

Work with the Royal College of Physicians (RCP) continues on a number of issues. The RA signed a memorandum of agreement with RCP regarding invited service reviews in July. Work to socialise the concept amongst our Clinical Directors (CDs) and to develop a working model for invited service reviews (ISRs) to compliment performance metrics and support improvements in renal services and patient outcomes is planned.

The RA recently agreed a new memorandum of understanding with the UK Royal Colleges of Physicians to continue to offer the Renal Medicine Speciality Certificate Examination to cover the period 2018-2020.

Finally, I would like to thank all the members of the Renal Association for the continued delivery of extremely high quality care, teaching and research despite the pressures of austerity and uncertainty as a result of Brexit affecting the National Health Service and Academia. A particular thanks to our volunteers without whom the Association would not be able to support our charitable objects of supporting learning, promoting research and improving service delivery. Thanks to many there has been great progress and much to celebrate in 2017 but the challenges over the next few years will remain immense. The Renal Association stands ready to play its part supporting our NHS and research members, focusing on the needs of patients and continuing to contribute to our Renal Association triple aim of education, research and service excellence. UK Kidney Week® 2018 in partnership with the British Renal Society will be the educational high point, solid progress with the UK Kidney Research Strategy is already underpinning new knowledge generation and I am heartened that our trainees, consultants and the wider multidisciplinary team have so enthusiastically embraced the quality improvement programme The Renal Association has put in place.

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DR INDRANIL DASGUPTA

REVIEW OF THE YEAR


My appointment coincided with the transition of the secretariat in-house and the re-design of the website which happened smoothly. The website has a number of new functionalities; I hope you find it much easier to navigate and is quicker for members to sign up and pay their membership online, by direct debit. I thank Jim Moriarty (Communication Officer), Yincent Tse (British Association for Paediatric Nephrology - BAPN Secretary), Matt Graham-Brown (SpR) and others who helped with this piece of work.

The Trustees of the Renal Association are working towards increasing the relevance and attractiveness of the Association to all categories of members and the UK renal community in general. During 2017 and 2018 we had 130 new members join us, of which 97 are trainees.

Please find below the current breakdown of membership by categories.

This is my first annual report as the secretary of the Renal Association having taken over from Dr Alison Brown at the UK Kidney Week® 2017. Alison did an absolutely fantastic job; it has been a hard act to follow!

RA MEMBERSHIP NUMBER

Clinical Trainee 231

Clinical Trainee is related specialties 22

Consultant 480

Consultant in related specialties 30

GP with renal interest 3

Honorary Member 27

MDT/UKRR 29

NCG Doctor 96

Overseas Member 15

Overseas Member (low) 4

Post Doctoral Scientist 43

Pre Doctoral Scientist 8

Retired Member 44

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A very successful RA corporate day event took place on the 18th October 2017 at the BMA House. An extensive discussion took place about how to increase communication and collaboration between the Association and industry.

Thanks are due to the demitting members of the Executive Committee for their contributions:

Dr Böckenhauer (chair of Rare Renal Disease Committee 2013-18)

Prof David Goldsmith (chair of International Committee 2013-17)

Dr Richard Haynes (elected member 2014-18)

Dr Andy Stein (elected member 2014-18)

We also thank members who responded to various NICE consultations over the last year:

Prof Sunil Bhandari Hyperkalaemia - patiromer and sodium zirconium cyclosilicate Appraisal 1293

Prof Sunil Bhandari Patriomer for treating hyperkalaemia

Prof Paul CockwellChronic kidney disease in adults

Dr Indranil Dasgupta Nice guideline PH46 BMI: Promoting health and preventing premature mortality in black, Asian and other minority ethnic groups

Dr Helen EddingtonEtelcalcetide For Treating Secondary Hyperparathyroidism

Prof Phil Kalra Establishing current research priorities in specialised care

Prof Nithya Krishnan Use of Organs from hepatitis C viraemic donors in hepatitis C negative recipients

Dr Elizabeth Lindley NICE consultation on changes to the technology appraisal programme

Prof Alan Salama and Prof Paul CockwellDH consultation on new opt-out system for organ and tissue donation

Prof Martin WilkieRenal replacement therapy

We have now developed a process of selecting Regional Specialty Advisors (RSA) to the Royal College of Physicians. A number of new Renal Specialty Advisors (RSAs) have been appointed in the last year. Please refer to our website for more information https://renal.orgCongratulations to all of them. Congratulations are also due to Colin Jones for his appointment as the Chair of the Specialist Certification Examination board of the RCP London.

In 2017 the Association awarded a number of awards and bursaries and more information can be found on page 18 of this report.

UK Kidney Week® 2017 in ACC Liverpool was a great success, with a total attendance of 750 registered attendees including 87 speakers and 92 exhibitors. Over 500 delegates tweeted during the conference generating more than 4000 tweets and nearly six million impressions.

UK Kidney Week® 2018 in Harrogate, a joint meeting between the RA and BRS, promises to be as exciting and here are some of the programme highlights:

Chandos Lecture: Dr Mena Clatworthy

De Wardener Lecture: Prof Moin Saleem

Osman Lecture: Prof Iain MacDougall

AEG Raine Award Lecture: Dr Pippa Bailey

I hope to see you all in Harrogate.


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PROF PHIL KALRA

ACADEMIC AFFAIRS REPORT

It is just over 18 months since I took up post as AVP and a large component of my time has been involved in development of two of our annual UK Kidney Week® conferences.

The June 2017 meeting in Liverpool was very successful – great venue, extremely convenient hotels, surprisingly good weather and a well-received programme. Some sessions were co-organised with the International Society of Nephrology (ISN), BTS and the BAPN, and we were grateful to Kidney Research UK for the sponsorship of several symposia. Around 350 abstracts were presented from institutions across the UK. We introduced a few initiatives, such as emphasis on social media with Twitter communication to patient and academic communities, greater integration of basic and clinical science in CME symposia, and we were particularly pleased to have involved so many SpRs in the organisation, abstract selection, session chairing and poster moderating. We fully intend to prioritise the involvement of our trainees in future activities of the Association. The prestigious Renal Association endowed lectures were delivered by:

Chandos: Prof Simon Davies (University Hospital, North Midlands)

de Wardener: Prof David Wheeler (Royal Free, London)

Osman: Prof Paul Brenchley (Manchester Royal Infirmary)

AEG Raine Award: Dr Edwin Wong (Newcastle University)

Progress with organising UK Kidney Week®

2018 in Harrogate on Tuesday 19th to Thursday 21st June, in partnership with the BRS, is on course. The programmes for all of the 35 symposia have been finalised and the layout ensures that there are clear tracks through the meeting for specific interest groups (eg multidisciplinary team (MDT) members, basic scientists).

The AVP chairs the Academic Affairs Board, which encompasses five committees (the International, Education and Training, Renal Research, Rare Disease and BAPN Research Committees).

Prof Iain MacPhee took over as chair of the International Committee at the end of 2017. He is undertaking a scoping exercise to determine what links are already in place with overseas centres (e.g. sister centres). The development and provision of online educational resources for international centres is also being considered. It is recognised that some centres in low and middle income countries. would benefit from more specific basic training programmes, rather than descriptions of state of the art Western nephrology, which can appear too far on the future developmental horizon.

The Education and Training Committee is now chaired by Prof Aine Burns, and a key issue that is disadvantaging our specialty is the dearth of junior doctors applying for SpR training posts in nephrology. We recognise the need for pro-active planning here and a range of initiatives are being undertaken. It is important that we interact with and encourage medical students and early grade doctors to consider future careers in nephrology. It has been proposed that each renal centre should consider raising the profile of nephrology in local teaching programmes for foundation and core medical training (CMT) doctors,


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contribute to regional ‘nephrology taster days’ for trainees, and encourage greater exposure of medical students to nephrology in University curricula. The annual RA Advanced Nephrology course in Oxford took place in early January 2017. The course was again full, with an impressive number of overseas delegates in attendance, and the programme was expertly put together by Sunil Bhandari and Paul Harden as before.

The Renal Research Committee, chaired by Jill Norman, has a broad remit which encompasses issues relating to both non-clinician and clinician renal scientists. With the publication of the UK Renal Research Strategy the Committee now has a stronger mandate to implement relevant parts of the strategy – for example, making trainees and basic scientists aware of academic training pathways, encouraging more of them into academic careers, and increasing opportunities for integration of basic and clinical research activity. There is a need to develop a supportive network for renal researchers working in laboratory environments, to help shape their career development opportunities and to increase engagement with clinical research groups. Social media could be harnessed to help develop the network.

Recruitment to the National Registry for Rare Kidney Diseases (RaDaR) continues to increase, with over 6,000 patients being recruited in the past twelve months, taking the total up to just over 16,000. 90 UK hospitals are now taking part and international recruitment is also growing. RaDaR currently covers 35 rare renal conditions, overseen by 25 Rare Disease Groups (RDGs). Patient and Clinician information on all RaDaR conditions is available on the Information Standard Accredited website RareRenal.org. An amendment in October 2017 now allows for direct patient contact, joint consent

with PatientView and the ability to link with other registries, biobanks and data from clinical trials. Detlef Böckenhauer will be standing down as Chair of the Rare Disease Committee in June 2018 following a very successful term. One of the key values of RaDaR will be in enabling patients with rare renal diseases to be contacted by researchers about new studies and treatments. Data linkage is crucial for this; ethics permission has been obtained and new consent forms designed. However, currently there is limited strategic oversight of research activity within each of the Rare Disease Groups (RDGs), and the Rare Diseases Committee’s remit is now being reviewed.

The British Association for Paediatric Nephrologists (BAPN) Research Committee is chaired by Rachel Lennon. The European Society of Paediatric Nephrology annual conference was successfully hosted in Glasgow in September, with 800 delegates in attendance. A BAPN research development plan is being developed with Kidney Research UK; this is highlighting study activity in five key clinical categories (advanced kidney injury - AKI, transplantation, cystic disease, glomerular disease and chronic kidney disease - CKD/dialysis) such that potential stakeholders and funders can be made aware of priorities for future research. Research leads have been selected for all 13 paediatric nephrology centres, with the aim of increasing the access of patients to research and increasing NIHR and devolved nation portfolio activity. Moin Saleem led a successful £3.2 million application to the Medical Research Council (MRC) Stratified Medicine call and this was awarded in full at the end of 2017. The project will focus on the investigation of two cohorts of kidney disease (idiopathic nephrotic syndrome and adult CKD) patients.

As AVP I am the current chair of the UK Kidney Research Consortium (UKKRC), which oversees and encourages research activity in all key sub-specialty areas via the 12 clinical study groups, RaDaR and two networks (Clinical Trials and Imaging).

The function and outputs of the Clinical Studies Groups (CSGs) have undoubtedly been a major success since their inception in 2009, stimulating an active and collaborative movement of nephrology research within the UK. At our latest national meeting in December 2017 senior members of the NIHR Health Technology Assessment (HTA) were invited, and nine topic suggestions were forwarded for consideration. One of these (extended hours haemodialysis) has just been advertised in an HTA call and we are hoping that two others may also lead to NIHR funding opportunities. We have aggregated information on funding successes since the last inventory in 2013, and approximately £22 million has been accrued for CSG-developed trials. A database to capture this and publication successes is being developed.

Co-ordination of delivery of the UK Renal Research Strategy is a key function of the UKKRC and KRUK provide invaluable support, including the Secretariat.

There has been significant progress with individual parts of the four strategic aims, although it is recognised that many of the aims will be iterative and frequently modified over time as the strategy unfolds. There will be even greater focus on patient engagement activity in 2018, which is considered a high level priority by many stakeholders including Kidney Care UK, KRUK and NIHR. It is incumbent upon us all to maintain the forward momentum and to progress the strategy in the areas where this is required.


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PROF PAUL COCKWELL

CLINICAL AFFAIRS BOARD

Quality ImprovementKidney Quality Improvement Partnership (KQuIP):In 2017 KQUIP was supported with £167,000 of funding: £130,000 from the RA; £26,000 from Kidney Care UK; £11,000 from industry partners. The three main clinical areas for KQuIP are (i) Transplant First: Improving access to pre-dialysis transplant listing and kidney transplantation; (ii) Home Therapies: Improving access to Home dialysis therapies; (iii) MAGIC (Managing Access by Generating Improvements in Cannulation): Improving AV fistula rates by improving needling techniques. Many of you have had practical involvement in KQuIP to date and the programme will continue national roll out through 2018. Detailed updates and a wealth of resources can be found on the KQuIP website https://www.thinkkidneys.nhs.uk/kquip

The development of KQuIP has anticipated the increasing national focus on using QI as seen through the Getting It Right First Time (GIRFT) Programme, a clinically led national programme that is supporting renal services to improve care and patient outcomes and to share best practice between trusts. It is led by joint National Clinical Leads, Dr Will McKane (Consultant Nephrologist, Sheffield) and Dr Graham Lipkin, and will utilise data-driven reports for each renal service derived from national datasets. This will be combined with departmental data on workforce, capacity and procurement. Pilot visits will start in July 2018 and the full visit programme to all renal units in the autumn of 2018.

These two initiatives provide an opportunity for developing a regional infrastructure to support renal services; the preferred model is a regional Renal Quality Improvement Board, to include broad representations from all units within a region and support renal services in delivering the national QI initiatives. We will look to scoping this model over the next 12 months.

Regional Peer Review will support the strong focus on QI: London and West Midlands have recently undertaken Peer Review. Supporting documentation for The West Midlands Peer Review can be viewed on https://www.thinkkidneys.nhs.uk/kquip/west-midland-peer-review-day

Transport Guidelines Group: Some CCGs have focused on transport for dialysis patients as an opportunity for financial efficiency. The UK Renal Registry PREM reported wide variability in dialysis patients experience of transport across UK renal services. In partnership with Kidney Care UK, the BRS, and other stakeholders, a guidelines group has been established. The aim of this group is to develop a national standards document and a toolkit for renal services to deal with local variation.

This is my first annual report as Clinical Vice President. I am very grateful for the support and guidance of my predecessor Dr Graham Lipkin, the other Trustees, and the chairs and members of the constituent committees of the Clinical Affairs Board. This report will particularly focus on those areas where there are current developments that have direct relevance to clinical renal services.


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Clinical Affairs Board CommitteesProf Alastair Hutchinson (Clinical Services Committee) and Dr Andrew Lewington (Clinical Practice Guidelines Committee) finished their terms of service as committee chairs in the last 12 months - many thanks for their outstanding work.

The Clinical Practice Guidelines Committee is under the excellent chairmanship of Dr Mike Robson, supported administratively by Melanie Dillon, and remains a vital part of the Association. The strategy for producing guidelines has recently been updated: for Kidney Disease: Improving Global Outcomes (KDIGO) or NICE guidelines the committee will produce a commentary indicating which recommendations the RA endorses. Full guidelines will continue to be produced on topics not covered by KDIGO and NICE. We continue to write joint guidelines with partner professional bodies. The work of the committee, membership, strategy, and guidelines, is on the website.

The Clinical Services Committee, chaired by Dr Katie Vinen is focused on supporting clinical services in their delivery and service development. The committee in particular acts to advise on national issues relevant to clinical services and to support quality and information agendas. Katie sends a regular newsletter to the clinical directors with updates and information. Katie also runs the annual Clinical Directors forum.

The Interventional Nephrology Group chaired by Prof Aine Burns has recently started. Aine is working with colleagues to develop a framework for this group. There is a meeting of the group at UK Kidney Week® 2018.

The Patient Information Group chaired by Dr Rebecca Suckling has been working hard to develop Patient Information Resources; an increasing range of outstanding patient information leaflets have been developed in collaboration with Kidney Care UK. The group also supports the National Kidney Federation. Resources can be viewed on and downloaded from the RA website and used in your local practice.

The RA-BRS Patient Safety Committee: Dr Katy Jones chairs this committee and is currently working with members of the committee to redevelop the terms of reference for this group. Incidents related to patient care, use of renal devices or medicines, and risks that could harm can be reported directly to the Committee, which has links to NHS England and the Medicines and Healthcare Products Regulatory Agency (MHRA).

The Equal Opportunities in Nephrology Committee is chaired by Dr Bhavna Pandya and is particularly focused on improving access to mentoring and career advice for nephrologists, and also encouraging women in leadership. The work of the committee at present includes a particular focus on surveying and supporting Non Consultant Grade Doctors.

Clinical Data Standards Committee and PatientView: Afzal Chaudhury continues to provide strong leadership; PatientView is a great RA success story.

Other areas of activityThe combined Renal Dialysis & Transplant Clinical Reference Group (CRG), chaired by Dr Richard Baker & Jon Gulliver as responsible Commissioner, is now

well established. The CRG leads on the development of clinical commissioning policies, service specifications and quality standards. There is broad representation from the renal community on the CRG.

Expert Working Group, Dr James Medcalf, Dr Clara Day and Dr Carol Inward (for the BAPN) provide clinical advice to NHS Digital and NHS Improvement around reference costs and tariff setting. This is a complex and challenging area and we are fortunate to have their commitment and expertise working on our behalf.

Trustees and executive committee members have to respond rapidly on behalf of the membership to national developments, and there have been several recent examples of this including:

(i) Response to the national organ donation initiative: this involved a survey to all members to ensure that feedback from the RA was representative of the views of the membership. This was put together by Prof Alan Salama and is an excellent piece of work and can be found on the Website.

(ii) Review of the impact of Vascular services reconfiguration on renal services. Vascular services are undergoing reconfiguration in many parts of the country, and with co-dependencies between vascular and renal services, for some units this represents a potential significant risk. Dr Peter Hewins is designated RA executive lead and is supporting Dr Lawrence Goldberg, who is chairing the review group.


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MS CATHERINE STANNARD | DR FERGUS CASKEY | DR RETHA STEENKAMP

UK RENAL REGISTRY REPORT

National AuditThe 19th Annual Report, containing data up to the end of 2015, was published in September 2017. This represented a slight delay on previous years, due to increasingly varied formats of files being received and increasing numbers of units submitting acute dialysis and chronic kidney disease data, both of which require additional time for data validation before loading onto the database. Work continues with Cambridge, which for a second year was unable to submit individual patient level data for national quality assurance. Work is ongoing to remedy this and their Chief Executive and Commissioners are aware.

The data collected primarily for audit are increasingly being used for secondary purposes to support quality improvement, commissioning and most recently Getting It Right First Time. In this context, the Registry is delighted to have added Dr James Medcalf to the team as Associate Medical Director for Audit. James brings a wealth of experience from his time working with Public Health England (which continues) and his understanding of health resource groups, tariffs and the National Renal Dataset.

We have continued to work with NHS Digital to be able to link UK Renal Registry (UKRR) data to Hospital Episode Statistics and Office for National Statistics for audit. At the time of writing, our application has been considered by their IGARD committee and they are considering our

feedback to their response. Once approved, we will be able to derive co-morbidity data for all renal units in England and Wales (for whom we already have similar data) and adjust mortality reports for case-mix.

Acute Kidney InjuryThe Acute Kidney Injury (AKI) National Programme has handed over responsibility for the AKI Master Patient Index to UKRR in March 2017, with a Task and Finish Group established to manage the validation of the data and plans for analyses and publications and an AKI Programme Board providing strategic direction for the AKI work under the Think Kidneys brand.

Regular quarterly reporting to individual laboratories submitting AKI warning test scores to the UKRR commenced in early 2017. The UKRR has developed a methodology for determining laboratory coverage by Clinical Commissioning Group (CCG) and is sending individualised reports on a quarterly basis to every CCG in England since quarter two of 2017, showing an estimated CCG AKI rate and an indicator of coverage in the CCG.

Data on cases of AKI in primary and secondary care are now being submitted to the Registry from 88.8% of the estimated 160 laboratories in England and this represents AKI warning test results transmitted until February 2018. The number of laboratories submitting data to the UKRR has been steadily increasing with time with an average of three additional


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laboratories submitting each month in 2017 and more than 582,801 AKI episodes reported to the UKRR during the period July 2016 to December 2017.

The real power of the data will come through linkage of the Master Patient Index to other data sets such as Hospital Episode Statistics, The Office for National Statistics and the Intensive Care National Audit and Research Centre, to inform research, improvement and commissioning across the population.

ResearchIn 2016, the Registry was successful in securing funding for two randomised controlled trials – The Prepare for Kidney Care study and the High-volume Haemodiafiltration vs High-flux Haemodialysis Registry Trial. Both create the opportunity for the Registry to develop new expertise and collaborations that will generate evidence that will change clinical practice. We are extremely grateful to the doctors and nurses in the renal units that are working with us on these innovative studies and of course to the patients who are agreeing to take part.

The Registry also supported three other groups in successful research funding bids over the last 12 months, one to the MRC (led by Prof Moin Saleem in Bristol, £3.1m), one to the NIHR (led by Dr Peter Watkinson in Oxford, £142k) and one to the Health Foundation (led by Dr Sabine van der Veer in Manchester, £399k).

It also supported Dr Barnaby Hole, a renal registrar in Bristol, in his successful application to NIHR for Clinical Doctoral Fellowship funding. There are other Academic Clinical Fellows working with UKRR now on NIHR fellowship applications and we are keen to encourage this model.

While the Registry has permission to undertake research with the data collected for audit, and data has been linked for individual analyses for research, work continues to establish an arrangement that will allow routine linkage with Hospital Episode Statistics and Office for National Statistics data for research.

Patient Reported OutcomesThe Patient Measures programme supports a person centred approach to care where people are supported to build their skills, knowledge and confidence to better manage and make decisions about their own health to improve their quality of life.

This programme is a collaboration between UKRR and NHS England and follows on from the work of the Transforming Participation in Chronic Kidney Disease (TP-CKD) Programme which ended in December 2017. The TP-CKD programme aimed to establish the feasibility of introducing and routinely collecting a series of person-centred measures such as symptom burden, quality of life and the ability to self-manage from kidney patients into the UKRR. Having successfully piloted the collection of patient reported outcome

measures and a patient’s level of activation in 14 renal centres, the programme is continuing patient reported measurement as well as testing interventions that might have a positive impact on an individual’s outcome.

The Patient Reported Experience Measure (PREM) was co-produced by patients and professionals as part of the TP-CKD programme and is now run annually as a joint collaboration between UKRR and Kidney Care UK with every adult renal centre in England and Wales invited to take part. The PREM has run annually since the first pilot in 2016, with last year’s collection resulting in over 11,000 completed PREM responses. The PREM has been validated and a national report on the results is published each year. For further information see www.renalreg.org/projects/prem


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DR DAVID HUGHES

THE BRITISH ASSOCIATION FOR PAEDIATRIC NEPHROLOGY (BAPN)

The BAPN can feel justly proud of a wonderful meeting, successful on so many levels. First and foremost the learning and education from the meeting was of a very high standard: international speakers of renown; research, with high quality representation from the UK; and pre-congress and parallel meetings marking a genuine engagement with multidisciplinary colleagues – dieticians, nurses, psychologists and others. The creative and innovative use of social media and the theme of reflection on “50 years past and future” were commented on widely and positively.

There was great opportunity to meet colleagues not only from Europe but from across the globe in both formal and informal social events. None of this happens without an immense amount of work by many people. However, I pay special tribute to Heather Maxwell, our Congress President. I witnessed the huge amount of personal effort she put in bringing the meeting to its successful delivery; Richard Coward, not only for the calibre of the speakers and the science and research on show, but also for ensuring all the sessions ran strictly to time… and for his kilt; Martin Christian for behind the scenes organisation and bringing together a successful trade exhibition with industry sponsors; and Yincent Tse for delivering our own YouTube channel with the unique historical resource on the birth of European paediatric

nephrology: www.youtube.com/c/ESPNhistory

With the RA secretariat service coming in-house, a huge amount of work for the successful switch was and continues to be performed by Dean Wallace (BAPN Communications Officer) and Yincent Tse (Honorary Secretary) on the new website, an integral part of our communication. The BAPN identity is maintained on the website. Further developments will allow educational materials to be housed there, with scope for use of new media.

Rachel Lennon (Research Secretary) led the development of paediatric sessions for UK Kidney Week® prepared our annual Winter Meeting in Manchester, and led the BAPN contribution to the Royal College of Paediatrics and Child Health (RCPCH) annual meeting in Birmingham.

It will come as no surprise that my highlight for 2017 was the 50th Anniversary meeting of the European Society for Paediatric Nephrology (ESPN) hosted by the BAPN in my home city of Glasgow, where the first meeting was held in 1967. We were privileged to have Prof Gavin Arneil, co-founder of the ESPN, open our meeting.

Prof Gavin Arneil at the opening ceremony, age 94


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There is a considerable amount of research activity across all of our centres. Much was showcased at the ESPN meeting and we will hear more about current projects at the Winter Meeting. Rachel continues the excellent work of our previous Research Secretaries in coordinating and representing paediatric research nationally on the UK Renal Research Committee.

Important components underpinning a number of research initiatives, as well as informing our clinical practice, include the work of the Registry and Audit Committee led by Heather Maxwell and the rare renal disease registry, RaDaR, chaired by Detlef Böckenhauer. Growing out from the RaDaR initiative. Moin Saleem led the successful MRC Stratified Medicine award: “NURTuRE – changing the landscape of renal medicine to foster a unified approach to stratified medicine” focussing on idiopathic nephrotic syndrome and chronic kidney disease.

The core of all our work is, of course, the daily delivery of clinical service to our patients. It is particularly challenging to have the paediatric renal voice heard as one of many specialties in the paediatric medicine clinical reference group (CRG) in NHS England (NHSE). Carol Inward is our voice in this forum and is also welcomed as an observer to the adult Renal CRG. Within our paediatric clinical practice we are continually faced with challenges delivering renal replacement, acute and chronic, scaled to small children. Such challenges have underpinned the BAPN supporting a ‘virtual group’ linking MDT staff from all our centres. This will allow rapid communication of developing service issues and on-line discussion of threats to delivering dialysis services and solutions that individual centres have implemented for problems as they arise.

Supporting service developments and helping us to learn from and share best practice, the Kidney Quality Improvement Partnership (KQuIP) provides a real practical opportunity, working with the whole renal community, to improve our standards of care.

Dal Hothi continues to lead this having worked previously alongside Jan Dudley, who now has completed her executive term. Collaborating closely with RA colleagues, Dal is working to ensure a strong paediatric profile in the UK Quality Improvement Strategy to achieve improvements in the delivery of children’s renal care. I am grateful for the valued contributions by Jan and recognise she will continue to contribute to our work in RA guidelines, patient information and maintain her NICE guideline commitments.

A key part of the KQuIP initiative is patient engagement. We have been fortunate to have patient/parent representation on our BAPN executive committee with Michelle Rossiter. Michelle has provided helpful insights during our deliberations in committee. These insights include those gathered from her personal experience as a living related kidney transplant donor. Michelle is in her final year as patient/parent representative and has clearly demonstrated the importance of maintaining that role on our executive.

Fostering the next generation of doctors through education and training, whether of undergraduates or doctors in training, I consider one of the great privileges in our work. Kay Tyerman, as our chair of College Specialty Advisory Committee (CSAC), has very successfully led the large piece of work revising the RCPCH postgraduate curriculum for nephrology training, with a shift from competencies to capabilities. We continue to attract a high standard of trainees to paediatric nephrology. I am aware, however, of the increasingly challenging scenario for trainee recruitment across the whole spectrum of paediatric and adult nephrology. It is important that we continue to enthuse new medical graduates for the future. It is particularly pleasing to see our 11 grid trainees taking forward a peer led teaching programme through their use of social media with ‘#kidneyschool’ being launched and welcoming Trainee Special Interest (SPIN) trainees to their training days.

Drew Maxted has provided able representation to the CSAC and executive on trainee matters.

As we develop clinical networking across paediatric centres the role of the paediatrician with a renal specialist interest (SPIN) merits support through continuing education and training. Our SPIN representative, Mona Aslam, is a key figure in this, supporting the current 18 trainees pursuing nephrology SPIN training. Many centres do not have or are unable to appoint a paediatrician with completed nephrology SPIN training. The development and support for Post Certificate of Completion of Training (CCT) SPIN training is at an early stage. I believe there is an opportunity to encourage and develop post-CCT paediatric nephrology SPIN training, working with the RCPCH to document accredited training as part of continuing professional development.

Following the inspirational presentations from ISN members at UK Kidney Week® in Liverpool and from Prof John Feehally at ESPN in Glasgow, the BAPN is exploring the international work currently undertaken by individual members and units, supporting paediatric renal services in low income countries. I am delighted that Mordi Muorah, our ‘ordinary’ member, working with Yincent Tse, has taken this matter forward and we will consider how the BAPN can better recognise and support this work. With the recent RA appointment of Iain MacPhee as the new chair of the International Committee we look forward to working on opportunities to engage more widely on global child health matters.

In this last year as BAPN President I thank all my colleagues for the willing support given to me through my three years in office. I know that support will continue to be given to Sally Hulton as she prepares to take on the office of President from June this year.

(It is with sadness that we report the death of Prof Gavin Arneil, BAPN founder, peacefully on 21st January 2018.)


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PROF NEIL SHEERIN

TREASURER’S REPORT


RENAL ASSOCIATION INCOME 2017

RENAL REGISTRY INCOME 2017

CAPITATION 80%

GRANTS 12.00%

OTHER INCOME7.7%

INVESTMENTS 0.3%

Total: £2,321,003

CONFERENCE REGISTRATION 40.0%

SPONSORSHIP 35.8%

MEMBERSHIPS 22.3%

DONATIONS AND LEGACIES 1.7%

INVESTMENTS 0.1%

OTHER INCOME 0.1%

Total: £501,153

OTHER INCOME

INVESTMENTS

DONATIONS AND LEGACIES

MEMBERSHIPS

SPONSORSHIP

CONFERENCE REGISTRATION

INVESTMENTS

OTHER INCOME

GRANTS

CAPITATION

Income from individual membership decreased in 2017 to a total of £90,728. Income from corporate sponsors fell despite initiatives to increase the number of sponsors. Conference registration was the largest source of income, totalling over £200,000.

The UK Renal Registry had a loss of £133,389 in 2017. This loss related to investment in the IT infrastructure of the UK Renal Registry and PatientView and increased office overhead costs. The income to the UK Renal Registry was £2,321,003 with capitation fees providing the major source of income with other significant income from grants.

The Renal Association had an overall loss of £192,193. Income during this period was £501,153 and expenditure of £693,346. This loss related to a loss made in relation to UK Kidney Week® 2017 (£81,610) and additional expenditure for the transfer of the Secretariat in house.

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RENAL ASSOCIATION EXPENDITURE 2017

RENAL REGISTRY EXPENDITURE 2017

STAFF COSTS 64%

PROFESSIONAL FEES 15%

IT COSTS 9%

EXPENSES4%

OFFICE OVERHEADS 4%

MEETING COSTS 2%

DEPRECIATION 1%

POSTAGE 0.5%

ADMIN COSTS 0.3%

BANK CHARGES 0.2%

Total: £2,454,392

MEETINGS 45%

SECRETARIAT 27%

LEGAL AND PROFESSIONAL 17%

AWARDS 5%

EXPENSES 2%

ACCOUNTANCY 2%

WEBSITE 1%

COMMUNICATIONS 0.6%

ADMIN 0.2%

BANK CHARGES 0.2%

Total: £693,346

BANK CHARGES

ADMIN

COMMUNICATIONS

WEBSITE

ACCOUNTANCY

EXPENSES

AWARDS

LEGAL AND PROFESSIONAL

SECRETARIAT

MEETINGS

BANK CHARGES

ADMIN

POSTAGE

DEPRECIATION

MEETING COSTS

OFFICE OVERHEADS

EXPENSES

IT COSTS

PROFESSIONAL FEES

STAFF COSTS

The UK Renal Registry continues to manage the finances of PatientView which is funded by a capitation fee.

At the end of 2017 the total amount of funds held by the Renal Association was £1,475,552. The reserves equate to approximately seven months expenditure for the Renal Association.

Overall the Renal Association is secure, the reserves held are sufficient to cover operating costs and this will be maintained. There are opportunities to increase income from corporate engagement and membership. Future annual meetings remain the biggest financial risk.

The pie charts on the following pages give an overview of the income and expenditure for the Renal Association and UK Renal Registry in 2017. Income and expenditure are broken down into their component parts.

For further details, please see the full financial statement for 2017 which will be available at www.renal.org from October 2017. The figures in the report are still being reviewed by the auditor and are subject to any changes they deem necessary. The data reported here have been supplied by the Renal Association. The interpretation and reporting of these data are the responsibility of the authors.


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AWARDS & BURSARIES


Medical Student Elective Bursaries Eight were awarded in 2017. The recipients were:

Emma Carter

Anna Fairclough

Holly Gillott

Kevin Joyce

Roisin McCormack

Jennifer Mun Kar Ng

Grace Pearson

Jake Tobin

AEG Raine AwardThe AEG Raine award is made annually to a relatively junior member who has made a significant contribution to research. In 2017 this was awarded to Edwin Wong for his work, ‘Understanding complement pathways in atypical haemolytic uraemic syndrome and C3 glomerulopathy’, which he presented at the UKKW 2017.

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Lockwood AwardThe Lockwood Award is awarded to help Renal Association members to present work and combine this with a visit to a collaborating laboratory or clinical nephrology unit overseas. In 2017 this was awarded to Thomas Wilkinson who visited the Vascular Physiology Laboratory of Professor David Edwards and Dr Danielle Kirkman at the University of Delaware, USA. There he learnt the technique of using muscle oxygenation saturation to assess response to incremental exercise in patients with CKD.

Walls BursariesThe John Walls Bursary enables two members, a clinician and non-clinician, to spend short periods at other centres, generally outside the UK, to learn new laboratory techniques or gain new clinical skills. In 2017 the Walls Bursary was not awarded.

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