Co-production is at the heart of how we work. This means patients and clinicians having an equal and reciprocal partnership. This is not only a programme aim, but is embedded in the programme’s delivery so that we are leading by example.
The board is led by an expert patient and kidney doctor as co-chairs.
The board is responsible for ensuring good governance, probity and progress, and reports to NHS England.
The programme board is led by a core team representing NHS England, the UK Renal Registry and Kidney patients.
Richard is Consultant Nephrologist and Director of the Renal Unit at Derby Teaching Hospitals NHS Foundation Trust, Chair of the Think Kidneys Programme Board and Co-Chair of the Transforming Participation in Chronic Kidney Disease Programme.
Richard trained at Trinity Hall, Cambridge and the London Hospital Medical College, qualifying in 1985. His early training was in the East London area before he moved into research at St Bartholomew’s Hospital. Richard was appointed a British Heart Foundation Fellow to explore the link between cardiovascular disease, calcium signalling and abnormalities of calcium metabolism in chronic kidney disease. He returned to the Royal London Hospital as lecturer and honorary senior registrar in nephrology, before being appointed as a single handed nephrologist at Derby in 1996.
In 2013 Richard was appointed National Clinical Director for Renal for a three year tenure and has also chaired the Kidney Alliance as well as being President of the British Renal Society. Richard’s special interests are in chronic kidney disease, acute kidney injury, home dialysis therapies, reducing infection in dialysis patients and vascular access.
Richard describes himself as a ‘gadget geek’ and struggles to manage without technology when he’s camping. Away from work music is important to Richard – he plays guitar (and, we’ve heard tell, the ukulele and that he once played in an Abba tribute band, listens to Genesis. His favourite place to visit is the Larmer Tree Festival. He’s also a keen reader and theatre lover.
There are a few other things it might be useful to know about Richard. He qualified as a marksman for the British Army, nearly fell out of a helicopter over Salisbury Plain, drove a 50 ton tank that had no brakes, and during his time in Cambridge rode a bike only three times, all of which ended in injury! Given you’re a keen marathon runner Richard we’d like to suggest you’re safest on two legs! We’ve also heard he goes to Derby County matches, but isn’t a supporter – just takes his son along…….yeah right……
Rachel is the Person Centred Care Facilitator for the Transforming Participation in Chronic Kidney Disease programme and in this role she works closely with the clinicians and patients involved in the programme. She is the Expert nurse Specialist on the Programme Board and is also on all three of the workstream groups and the communications sub-groups. Rachel is a Registered General Nurse and trained at Hammersmith Hospital in London.
Rachel has worked at several large renal units and was the matron for renal services in Plymouth for 10 years. Following this she was the nurse director for the Peninsula renal network where she developed a special interest in improving services for young people with kidney problems, linking it to the concept of person centred care. She set up and currently coordinates a national network for professionals interested in young people’s services and how these can be underpinned by person centred care. She was also involved in developing a generic draft service specification for the transition of young people from children to adult services during her time at NHS Improving Quality.
When Rachel isn’t travelling the country meeting renal teams and patients she’s looking after or riding her horse, gardening, running (up to a half marathon) or reading and she enjoys the occasional real ale.
Jonathon is Co-Chair of the Programme Board for the Transforming Participation in Chronic Kidney Disease.
Jonathon’s education began with a BA Hons in Law and Economics at Keele University following which he spent the next 20 years working for HSBC, Nomura and Deutsche Bank as Asian Salesperson. Since then he has been Chair of the Kidney Disease Modernisation Initiative (04-08) – South East London, worked on the Advanced Renal Care Project (supportive care) 2012 and Co-Chair PPI C-Change Project (renal supportive care research) 2013-2015.
Outside of his work Jonathon has an interest in complementary therapies and spiritual development and he starts each day with yoga and meditation. In his spare time he enjoys swimming, movies, reading and spending time making jewellery with his wife, Naila.
If Jonathon were to be prime minister for a day he would ensure everyone living with a long term condition has access to a self-management course, and afterwards he’d dine with Ghandi to find out who inspired him.
Ron is Director of the UK Renal Registry and has more than 30 years’ experience working in the NHS, starting his career after his degree at Aberystwyth University as a biomedical scientist. Ron then went on to work in the fields of governance and quality improvement with senior roles in these areas including Director of the National Clinical Governance Support Team and Head of Healthcare Quality and Standards within the Department of Health. Ron has lectured and presented on quality improvement across the globe.
When he’s not working, Ron likes spending time with his family and is a bit of a Rugby nut – he coaches an under 16 Rugby team and says ‘it’s the best game in the world’.
Ron can be contacted at Ron.Cullen@renalregistry.nhs.uk
Ken Farrington has been a consultant nephrologist at the Lister Hospital in Stevenage for 25 years. He trained in Chemistry in Manchester, Medicine in Cardiff, and Nephrology, predominantly at the Royal Free. He is Professor and Associate Dean in Postgraduate Medicine at the University of Hertfordshire, and Treasurer of the British Renal Society. His main research interests are in metabolic aspects of Chronic Kidney disease, Haemodialysis, Conservative and End of Life Care.
Outside of his work Ken’s favourite place to visit it the Isle of Mull and if he could have dinner with anyone he would choose William Blake.
Jon has worked in Specialised Commissioning for the last 18 months and in that time has been closely involved in policy development and in the establishment of the Rheumatology Network in the East Midlands and is currently CRG Accountable Commissioner for renal dialysis, renal transplant, specialised dermatology and specialised rheumatology CRG for NHS England (Midlands and East).
For the Transforming Participation in Chronic Kidney Disease programme Jon is on the programme Board and is co-chair of the Commissioning workstream
Jon has worked in the NHS for 25 years in a number of roles including clinical service management, strategic development and commissioning. His service management roles have covered a diverse range of services from neonatal care to sexual health and a number of specialised services. He has also worked as Director of Strategy in a PCT and as Associate Director of Operations in a large acute Trust.
In his spare time Jon enjoys walking his dog. He used to own a 1973 VW camper van and enjoyed many family camping holidays including going as far north as Mull and as far south as Barcelona. Jon sold the camper 3 years ago as it was getting too small for the family but having been told by his wife that he “hadn’t been happy since he sold it” he went out a year ago and updated to a 1990!
Michael, known to us all as Bud, is Treasurer of the National Kidney Federation and Chairman of Gloucestershire Kidney Patients’ Association and, for the Transforming Participation in CKD is on the programme Board, the Measurement Workstream and the Communications Sub Group.
Michael served in the RAF for almost 30 years and then joined the Gloucestershire Constabulary managing the force radio workshops for a further 22 years. His passion is fair access to treatment for patients throughout the UK – as well as sport which includes Rugby and sailing.
Despite Bud’s commitment to kidney charities he tells us the things he likes to do in his spare time are fine dining and sailing. If he could take anyone to dinner it would be Winston Churchill because he would like to hear more of his wicked sense of humour. So that’s where you get it from Bud!
Denny is a member of the National Kidney Federation and the UK Renal Registry Patient Council.
Denny’s roles for the Transforming Participation in Chronic Kidney Disease include Programme Board membership as well as Measurement Workstream member and Co-Chair of the Communications Sub-Group.
Formerly a civil servant Denny describes her interests beyond her family as helping other renal patients find their “voice” and assisting with renal research
Sabine van der Veer
Sabine is a Researcher at the Centre for Health Informatics at the University of Manchester. She is on the Programme Board for Transforming Participation in Chronic Kidney Disease and is Co-Chair of the Measurement Workstream.
Sabine’s education includes an MSc and PhD in Health Informatics at the University of Amsterdam, in the Netherlands. Her special interests include how digital technology can empower patients to contribute and use data to help them manage their health and care.
Sabine also likes to read and hike in her spare time, and is very fond of the Alps. She describes herself as a geek when at work and Luddite when at home when it comes to technology, and would give up her smart phone “in the blink of an eye”.
Rob is a Consultant Kidney Doctor (Nephrologist) at King’s College Hospital NHS Foundation Trust in London. He is a member of the Programme Board for Transforming Participation in Chronic Kidney Disease. Rob’s education includes his Philosophy Degree at Cambridge followed by Medicine and research into decision-making, including a doctorate entitled ‘How are decisions about dialysis made’.
Rob lists swimming in the Welsh sea, and being up a mountain with his family as his favourite things to do outside work. He could live without his smart phone because he thinks it would make him more productive – philosophical debate to follow…
Andrew is a patient representative on the Transforming Participation in Chronic Kidney Disease Programme Board. Andrew had his second transplant nearly 41 years ago and has been a kidney patient for 46 years. He is involved in two other working groups for the programme – the Intervention workstream and the Communications sub-group. Andrew also works with the British Kidney Patient Association and Plymouth Hospitals Renal unit Patient Action Group and Transplant Strategy Group. Unsurprisingly Andrew describes his zest for life and his family as the things that get him up in the morning.
Andrew’s education includes a BSc Hons degree in Biochemistry at Leeds and his PhD at Guy’s Hospital, London. Andrew recently retired as a Professor having spent his career leading a research group studying kidney function in health and disease. In his spare time he enjoys skiing, sailing his traditional working boat around Brittany, sea shanty festivals and coaching and watching rugby. If Andrew was to be made prime minister for the day his aim would be to make the NHS transparent. You are contributing towards that with your work on the Programme, and as they say, every little helps.
Claire is a Doctor of Research Scientist working in the NHS and is Co-Chair of the Measurement Workstream in the Transforming Participation in CKD Programme.
Claire’s education includes her PhD in Energy Kinetics in Preserved Livers which she studied for in Leeds and an M.Sc. in Immunology and Immunogenetics at the University of Manchester, preceded by her BSc (Hons) in Microbiology in Leeds.
Claire’s interest and knowledge in the programme is driven by her unique perspective on kidney disease, having had renal failure since childhood and following haemodialysis has been the recipient of both kidney and liver transplants. She is an active Committee Member of West Riding Kidney Patients Association and the UK Renal Registry Patient Council.
Amateur dramatics are also on Claire’s lists of interests as well as the British Transplant Games and the Transplant Choir. While she describes her guilty pleasures as enjoying listening to Wham! and Abba, she’s also a member of MENSA – so probably best not to question her further about this!
As a Patient Representative on the Transforming Participation in CKD Board, Diane brings a wealth of experience both as a patient and as an experienced business manager. In her professional life Diane worked as a senior manager in the Supplies Division and for a market leading supplier to the NHS. Diane’s has experience as a patient having suffered several major illnesses, and she describes her pride in the NHS as “Second to none, and I’m keen to help rebuild the NHS and I feel I’m contributing by working on the programme”.
A very keen and skilled sportswoman in her early life, Diane now watches many sports – hockey, football, cricket and athletics from the comfort of her sofa which she shares with her cats – Ben, a spotted Bengal and Holly, a Mainecoone. And also in her spare time Diane likes to chat with friends and family here in the UK but also around the world. Diane admits to two vices – supporting Birmingham City which she says means she’s either an eternal optimist or a born loser – and enjoying bananas which she knows many of her friends on dialysis are unable to have!
In her student years (‘a long time ago’), Fiona studied a BA (Hons) English at Southampton University. However, after her student years Fiona pursued and continues to pursue her interest in healthcare. Fiona’s roles at present is Policy Director for The British Kidney Patient Association, and co-chairs the Risk workstream for the Acute Kidney Injury National Programme.
Fiona is Chair of the UK Renal Registry Patient Council, the West Herts Hospital Organ Donation committee and is vice chair at The Local Kidney Patients Association at Lister Hospital. In her spare time (though we find it hard to believe she has any!) Fiona takes things at a bit more relaxed pace, and enjoys activities such as sleeping, reading, and going for long walks with the family dog, Ollie.
Fergus is a Consultant Nephrologist, an Honorary Senior Clinical Lecturer and Medical Director at the UK Renal Registry.
Having graduated from the University of Glasgow in 1993, Fergus went on to obtain a Masters in Public Health and Health Services Research and then a further Masters in the Cost-effectiveness of Dialysis in Europe from the University of Aberdeen. He has a special interest in health services research.
Fergus became a Consultant Nephrologist in Bristol in 2005 and was appointed Medical Director of the UK Renal Registry in 2013. His research interests include the epidemiology of chronic kidney disease (CKD) and end stage renal disease (ESRD) particularly around equity, the application of mixed methods research to understand the reasons behind observed differences, and the measurement of patient reported outcomes.
David is a member of the Programme Board for Transforming Participation in Chronic Kidney Disease and is Co—Chair of Intervention workstream.
David has had a successful career as a commercial metallurgist and in the last 15 years has been involved in health management and support activities. David trained as a tutor, and subsequently as a master tutor for the Expert Patient Programme and has facilitated many courses and co-trained many tutors. From 2006 to today he has held the post of Honorary Research Fellowship at Coventry University, where as a senior trainer he co-authored the Coventry University HOPE programme, training 270 health professional and lay facilitators.
David has also worked as a consultant for the Princess Royal Trust Coventry Carers Centre & Coventry Community Services to develop and manage self-management carers courses, train tutors and maintain quality standards of all tutors registered.
In 2006 David became a member of the Universities Teaching and Research Action Partnership leading “Voices of Experience” workshops for medical students. David has also be a facilitator on the General Practice Course seminars run by the Institute of Clinical Education at the University of Warwick Medical Teaching Centre. The seminars are for GPs as part of their training and David’s role was to present the patient self-management/health professional relationship, and to provide an overview of a cognitive approach to consultation and client perspective and the values of a holistic view.