Are you a patient, relative or carer of someone with kidney disease?
The UK Kidney Association (UKKA) patient council helps to connect the UKKA with people whose lives are directly affected by kidney disease. Your experiences, views and opinions can influence current and future kidney services because we work with the kidney centres, researchers and the NHS.
The UKKA patient council's role includes:
Getting involved in new programmes of work that aim to improve experiences and outcomes for patients
Helping to produce new patient information – reports, leaflets and posters
Supporting the UKKA on issues relating to information governance – how data is managed and used, and patient consent
Discussing new research proposals and how patient data from kidney centres are used
Contributing to the production of new clinical guidelines for kidney health professionals
Encouraging discussion between patients and clinicians to promote patient involvement in kidney centres at local, regional and national levels.
The UKKA patient council meets quarterly, and members are expected to participate between meetings by email/telephone as necessary.
Patient council members are unpaid, but an allowance is available for attendance at meetings, plus travel costs. Any training needs for this role will be provided with on-going support to help you take on these responsibilities.
Sue became Chair of the UK Kidney Association Patient Council in 2020 after four years as a member. Sue has spent her working life in publishing and has worked as a freelance medical writer and editor for over 20 years. She was diagnosed with kidney failure at the age of 25 on admission to Guy’s Hospital, London. After nine years on home haemodialysis, Sue received a deceased-donor kidney transplant in 1986.
Hakeem Adedoja, patient representative
Keith Bucknall, patient representative
Claire Corps, patient representative
Ron Cullen, chief executive, The UK Kidney Association
Mark Davis, patient representative
Katharine Evans, research manager, The UK Kidney Association
Alan Hancock, patient representative
Margaret Ince, patient representative
Fiona Loud, policy director of Kidney Care UK
Ewan MacLean, patient representative
Suzanne McConnell, patient representative
James Medcalf, medical director, UK Renal Registry
Tarsem Paul, patient representative
Tracey Rose, patient representative
Amrit Sanchadev, patient representative
The UK Kidney Association and its patient council would like to acknowledge the contribution our late member Denny Abbott made. She was a founder member of the council in 2014 and a great believer in the power of data for improvement in patient care. She gave freely of her time and expertise as a patient, despite her health challenges and we miss her and thank her for all her authoritative, consistent contributions to the group from the start. She was awarded the 2018 UKRR Terry Feest award in recognition of her efforts.