Our Patient Council brings the experience of living with kidney disease into the work of the UK Kidney Association (UKKA).
Members contribute to decisions about research and the use of patient data. They also help develop clinical guidelines and patient information, working with UKKA staff and healthcare professionals across the Association.
Sue became Chair of the UKKA Patient Council in 2020 after four years as a member.
She spent her working life in publishing, including working 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.
The Patient Council works with patients, carers, healthcare professionals and researchers. Its responsibilities include:
The Council worked with the UK Renal Registry on its disparities reports, which examine differences in care and outcomes associated with age, sex, ethnicity and socioeconomic circumstances among people with kidney failure.
The move from PatientView to Patients Know Best was discussed and approved through the Patient Council as part of the wider consultation with patients.
This brought patients into decisions about the service used to access their kidney health information online.
Council members have supported the development of the Consent for Approach for Research (C4AR) database, intended to help people with kidney disease hear about research opportunities and contribute their experiences.
The programme focuses on subjects patients have identified as important, including fatigue, sleep and mobility.
Patient Council representatives take part in the group that assesses applications to use UK Renal Registry data.
They consider proposals from a patient’s perspective and contribute to decisions about whether the work should proceed. Applicants must address the patient representatives’ requirements before use of the data can be approved.
This gives patients a direct role in decisions about research using information held by the registry.
The Council meets four times a year. Members also contribute between meetings by email or telephone, including reviewing proposals and commenting on documents. Membership is unpaid, but an allowance is available for attending meetings, together with travel costs. Training and ongoing support are provided to help members carry out their responsibilities.
Denny Abbott was a founding member of the Patient Council in 2014 and a strong advocate for using data to improve kidney care.
She generously contributed her time and experience despite her own health challenges. Her knowledge and commitment helped shape the Council’s work, and she received the UKRR Terry Feest Award in 2018 in recognition of her contribution.
The UKKA and Patient Council remember Denny with gratitude.