Kidney Care UK report reveals 1 in 10 diagnosed via NHS App
PIF member Kidney Care UK is calling for systemic changes to stop people being diagnosed with kidney disease without proper support and guidance. The charity's latest report, Falling through the G-App, was published this week and revealed that 1 in 10 people found out they had chronic kidney disease (CKD) because it was listed in their NHS App. They were not previously aware they had CKD.
Survey reveals lack of support
The findings came after Kidney Care UK conducted an online survey between 4 October and 4 November 2025 to provide a snapshot of the experience of over 1,300 people with kidney disease when being diagnosed with CKD in the UK. The survey also found:
- Almost 1 in 7 people were told they had CKD unexpectedly whilst being treated for something else.
- 4 in 10 did not have the opportunity to discuss their diagnosis with a healthcare professional.
- Almost half of respondents found it either somewhat or very difficult to get the information they needed about kidney disease, and what it means for them, when they were diagnosed.
- More than half were either fairly or very unsatisfied with their diagnosis experience.
Call for access to trusted information
The report makes several recommendations, including calls to ensure that:
- People with CKD must not find out about their diagnosis via the NHS App without a discussion with a healthcare professional about what it means to them.
- People with CKD are provided with trusted information so they can take control of their kidney health, no matter what stage of CKD they are at. This includes links to trusted sources within the NHS App and on the NHS website.
- Governments must ensure the pace of growth and development of AI in healthcare does not result in people accessing unsafe, inappropriate or misleading health information.
Recommendations endorsed by PIF
PIF director Sophie Randall shared a perspective on the importance of trusted and accredited information as part of the report.
She wrote: "PIF endorses the recommendations of this report. Our data show 8 in 10 people want information to manage their health. 8 in 10 people who use health charities feel better able to manage long-term conditions.
"Signposting to trusted sources is a role for the NHS App. The PIF TICK is a certification scheme for trusted health information.
"Kidney Care UK is one of 150 organisations awarded the PIF TICK. The NHS is already signposting to these organisations via public and health libraries, so why not the NHS App?"
Read the Falling Through the G-App report on the Kidney Care UK website.