The Falling through the GApp report by Kidney Care UK finds that many learn of chronic kidney disease via the NHS App, often without support, revealing a critical need for systemic reform
Kidney Care UK’s Falling through the GApp report reveals that thousands are diagnosed with chronic kidney disease via the NHS App, often without explanation or support. The charity urges urgent improvements in diagnosis, communication, and the provision of reliable patient information.
Delayed diagnoses and lack of support highlight NHS communication challenges
Currently, NHS guidelines state that ‘patients shouldn’t be receiving serious diagnoses through digital channels without adequate support or context’; however, the latest report from Kidney Care UK highlights that far too many people are receiving diagnoses via the NHS app. Almost 40% did not have the opportunity to discuss their diagnosis with a healthcare professional.
This communication gap in kidney disease diagnosis is deepened by a common yet concerning delay between when doctors diagnose chronic kidney disease and when patients are informed.
The research showed that only one third of our survey respondents (36%) found out they had chronic kidney disease at the same time that it was diagnosed. For 20% of respondents, there was a gap of one year between the diagnosis being recorded on their records and when they were told they had chronic kidney disease. Shockingly, most of these people (84%) were in the later stage of chronic kidney disease.
Fiona Loud, Policy Director at Kidney Care UK, said: “Our research found that in many cases there is a considerable delay between the diagnosis being recorded and the individual being told they have CKD. As well as missing out on opportunities for medication to help slow the decline in their kidney function, this robs people of time when they could be making lifestyle and dietary changes that could help prolong their kidney health. This report makes an urgent and compelling case that more needs to be done to make sure people receive a timely diagnosis, delivered sensitively and accompanied by useful information and support.”
Patients face long waits as NHS communication falters
The GApp report also found that 68% of respondents used the internet and social media to find information to better understand their diagnosis, suggesting a majority turned to these sources rather than discussing their condition with a health professional.
Sophie Randall, Director of the Patient Information Forum (PIF), adds: “PIF endorses the recommendations of this report. Our data show that eight in ten people want information to manage their health, and eight in ten people who use health charities feel better able to manage long-term conditions. By 2029, the NHS plan promises a service that will be digital by default. To do this, it needs to start meeting the needs of the public with its digital services. Only by providing information and support can we move the NHS from a sickness model to a prevention service.”
“After launching our Bloody Amazing Kidneys campaign, we have heard from even more people who have had poor diagnosis experiences. This must change. As the NHS implements their 10-year plan for England, the shift to prevention brings new opportunities for improving rates of CKD identification and management. Moving from analogue to digital has huge potential for improvement, but as the findings of this report clearly demonstrate, it must have patient experience front and centre to avoid causing unintended harm or distress,” commented Fiona Loud, Policy Director at Kidney Care UK.
