FALLING THROUGH THE GAAP: WHEN PATIENTS DIAGNOSE THEMSELVES

The NHS App is becoming the front door of the health service. The Government’s 10-year health plan, released in July 2025, aims for patients to access their health records, test results, and referral information. That sounds like progress. In many ways it is. But a report from Kidney Care UK suggests the reality is running ahead of the safeguards.¹

The report, titled Falling through the GApp, surveyed more than 1,300 people with kidney disease across the UK in October 2025. The headline finding: 11% of respondents first discovered they had chronic kidney disease by seeing it recorded in the NHS App. Not from a GP. Not from a letter. From a screen.

Almost 40% of those surveyed did not have the opportunity to discuss their diagnosis with a healthcare professional at all. Only a third (36%) found out they had CKD at the same time the diagnosis was first recorded. For the remainder, there was a gap, sometimes a long one. Kidney Care UK says about 10% of calls to its support line are from people who recently discovered a CKD diagnosis in their records. They had no prior discussion with their doctor.

NHS guidelines say patients shouldn't get serious diagnoses online. They need proper support and context. But the mechanism is passive: once a CKD code is added to a patient’s record, it becomes visible in the App. There is no flag, no accompanying explanation, no prompted follow-up. A patient looking at their blood results after a routine test might see “chronic kidney disease stage 3” for the first time. They may feel confused and alone, with no clinical context.

The downstream effect is predictable. Sixty-eight percent of people used the internet and social media to learn about their diagnosis. Kidney Care UK's report showed that 65% of people with diabetes and hypertension didn’t know about their kidney risk before getting diagnosed with CKD. This happened even though NICE guidelines suggest screening for these groups.

This is not an argument against digital access. It is an argument for getting the sequencing right. Transparent records are valuable. But transparency without a conversation is not the same as good care.

The conversation about the diagnosis needs to happen before or at the time of coding, not afterwards. Consider checking how your practice handles communication about blood results, diagnostic coding, and patient notifications. We should also think about whether patients in high-risk groups, like those with diabetes or hypertension, are informed about their kidney risk before a CKD code shows up.

References

Medicine Central is a clinical evidence review for UK primary care clinicians. Content reflects evidence current at time of publication and should be read alongside local formulary and clinical guidance. For healthcare professionals only.