A letter from NHS England leaders has been sent to NHS Trusts and integrated care boards (ICBs) asking them to take immediate action to avoid people finding out about health conditions like kidney disease without the opportunity for a discussion with their healthcare professionals.
Kidney Care UK welcomes this step, which follows two years of campaigning on this issue, including the release of our recent Falling through the G-App report.
To avoid this type of unexpected disclosure and the distress it causes, we are asking NHS organisations to take immediate action while still ensuring patients have safe and timely digital access to their health informationLetter from NHS England leaders to NHS organisations
Existing NHS guidelines state that 'patients shouldn’t be receiving serious diagnoses through digital channels without adequate support or context'. However, thanks to the members of the kidney community sharing their kidney diagnosis experience with us, Kidney Care UK has revealed that far too many people are receiving their diagnosis through digital channels, and not getting the support or context they need: our Falling through the G-App report highlighted that 1 in 10 people found out about their kidney disease diagnosis via the NHS App.
I was diagnosed recently. It was a big shock and I feel really upset, as I have discovered that on the App it says I have had CKD for 5 years. I find it totally frustrating but there have been so many opportunities for them to tell me – I am really cross as I would have made changes to my diet, eaten less salt and had opportunities to do what I can to improve things.Patient quote shared with Kidney Care UK via voice note
We’re glad that NHS England and the Department of Health and Social Care have listened to us. The letter, dated 26 March 2026, is signed by the National Medical Directors of NHS England and the National Chief Clinical Information Officer. It sets out what NHS Trusts must do to make sure patients do not receive sensitive information, like new diagnoses, via the NHS App or other portal before their doctor or clinical team has made contact with them.
NHS organisations must:
- Identify an accountable lead within each organisation to oversee local actions and learning.
- Review local policies and system configuration relating to automated results releases across electronic patient records and portals.
- Ensure staff understand the risks of unexpected disclosures and their responsibility to reduce them.
- Make sure staff include clear management plans in all correspondence; notifying patients which clinical team ordered their test(s) and how to contact them if they need further information.
- Review any relevant incidents through local clinical and patient safety incident response framework processes and update relevant workflows and configurations to mitigate future risks.
- Establish processes to support patients who may be distressed following an unexpected disclosure.
Making sure guidelines are followed
Kidney Care UK will be checking whether these actions have been carried out across England and if fewer people are finding out their diagnosis via the NHS App without supporting information or support.
From 1 May 2026, please get in touch with us at [email protected] to let us know if you've recently found out about your kidney disease diagnosis via the NHS App or other digital means without a conversation with your healthcare professional.
If people are still finding out in this way we need to let NHS England know that they need to do more to ensure that diagnoses of kidney disease are communicated in a sensitive way, accompanied by useful information and support.
Thank you to everyone who has responded to our #BloodyAmazingKidneys campaign, including the people who left us voice notes about their experiences of diagnosis and the 1,311 people who responded to the survey which led to our Falling through the G-App report in December 2025. If you’d like to find out more about how you can support our campaigning work please join our Campaigners Network.