Transforming community voices into national action
Progress, priorities and next steps.
For several months, the kidney community has been campaigning to policy makers for a Kidney Disease Modern Service Framework¹. Together, we’ve already made significant progress. Here’s what’s happened so far:
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A programme of listening events, Voices to Vision, has brought together over 450 patients, healthcare professionals, charity and community partners to help shape a national strategy for kidney disease.
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We have been struck by the passion, energy and commitment of the community at these events.
8 patient speakers generously shared their stories to help demonstrate the difference a national strategy could make to people’s lives, and a further 40 patients and carers attended and contributed to the conversations.
Clinicians, charity representatives and academic speakers shared their expertise to help drive forward change and make kidney care the best it can be for the future.
The events were supported by 37 volunteer facilitators from across our multi-professional community and 20 volunteer scribes who captured every tabletop or breakout room discussion during each event. This data is now being carefully analysed, organised and written up by the University of Leicester, to feed into topic expert groups as they consider priorities to include in a national strategy for kidney disease.
This process is demonstrating what we are capable of when we work together as a community, united in a common goal to improve kidney care.
We continue to seek views through a listening survey which is open to professionals, patients and carers until 30th September 2026.
We are holding an online primary care listening event on 15th September, and two final online listening events for patients and carers on 22nd and 23rd September.
Take part in our listening events
Patient and carer events
- 22nd September | online: 18:00 - 20:00
- 23rd September | online: 12:00 - 14:00
Register for either of these events
Kidney disease and primary care event
- 15th September | online: 12:30 - 14:30
7 Million Lives at Risk: What’s the plan?
This joint campaign is represented by Kidney Care UK, Kidney Research UK, the National Kidney Federation, PKD Charity, the UK Kidney Association, clinical representatives including devolved nations, the National Clinical Director for renal and National Specialist Advisor for paediatric renal medicine, together with two patient experts.
The publication of a Cardiovascular Modern Service Framework has been a positive step forward for the kidney community, highlighting how important kidney health is in managing heart disease. But we know that this does not go far enough for people living with kidney disease and we are determined in our ambition for the government to commit to a dedicated Kidney Disease Modern Service Framework.
The foundations are being laid. We hope a community-led strategy can help demonstrate to government the potential impact of a Kidney Disease Modern Service Framework. A national strategy could improve the lives of those living with kidney disease, but also those living unknowingly or knowingly at risk of associated conditions such as diabetes, heart disease and stroke.
We aim to publish a case for change in the Autumn of this year. We know that 7 million people in the UK are affected by kidney disease and that by working together as a community, we can improve their lives and ensure people living with kidney disease receive the care that is right for them.
Thank you for all your help.
Get in touch with the campaign team at [email protected].
¹ A Modern Service Framework is a specialty specific national strategy backed by the government’s department for health and social care.
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