Patient Council

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.

 

Current members

Chair:

Sue Lyon

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

Guy Richards, patient representative

Tracey Rose, patient representative

Amrit Sanchadev, patient representative

Tarsem Paul, 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.

Guidelines

NICE accredited clinical practice guidelines 

Available here

Annual report patient summaries

UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

Read the report