The British Kidney Patient Association is joining forces with the UK Renal Registry and NHS England to support better measurement of people’s experience when they have kidney disease. Through the Patient Reported Experience Measure (PREM) survey patients are able to report their experience on topics such as communication and support from members of the renal team, decisions, privacy and dignity and the environment.
This work is an essential part of a national project to improve the involvement of people in their own care. The Transforming Participation in Chronic Kidney Disease Programme, whose main aim is to improve the lives of people with kidney disease, will make use of the measurement tool. This provides the opportunity for people to have their say about their care, thereby offering Renal Units the opportunity to improve their services in line with patient need.
Paddy Tabor, Chief Executive of the BKPA said
“The British Kidney Patient Association are delighted to be partnering with the UK Renal Registry and NHS England in this extremely important work that will enable patients’ views to sit at the very heart of service improvement and enable patients truly to become partners in their own care.
The BKPA, has been providing support to patients and their families to improve quality of life for 40 years through direct patient support as well as its work improving health and care services. We have always sought to ensure that the patient’s voice is at the heart of change.
We believe this is a transformational moment, as for the first time patients’ views are captured and become established as a core part of the central analysis and reporting systems within the renal community. We have no doubt that the changes being developed in this project will drive significant change in the way we understand and develop service provision and will enable patients to take more control of their own care, bringing the associated benefits of improved outcomes and quality of life.”
Jonathon Hope, Co-Chair of the Transforming Participation in Chronic Kidney Disease programme, explained why this new PREM is important to patients:
“Unlike some other long term conditions, CKD can be highly medicalised, so that many of us face years of dialysis, transplantation, supportive care or hospitalisation: so as patients, the experience of how we receive this care is absolutely vital. We are delighted that the BKPA are supporting us in rolling out this PREMS survey so that as kidney patients, more of us will get our voice heard and acted upon in the shaping, designing and delivery of this care.”