1 in 10 found kidney disease diagnosis on NHS App; Making content accessible; Patient experience plan lacks detail
Report reveals 1 in 10 were diagnosed with kidney disease 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 GApp, 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. 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.
The report, which includes a comment from PIF director Sophie Randall, 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.
The recommendations have been endorsed by PIF.
Find out more and read the full report on the Kidney Care UK website here.
Briefing on delivering accessibility using plain language
A new resource explores the value of plain language and how it can help make content accessible to the widest possible audience. The Association of Translation Companies (ATC) has published its Accessibility Briefing on Plain Language pointing out how accessibility is now a legal obligation under The European Accessibility Act. The association - a PIF partner - says keeping wording concise and clear means more users can engage with your content and it can prevent service users who are neurodivergent from feeling isolated.
The guidance explains how plain language is communication in which wording, structure and design are so clear that intended readers can easily find what they need, understand what they find, and use that information. The briefing also includes information on emerging plain language standards and links to other resources about the best use of plain language. There are also links for those keen to understand the accessibility landscape and requirements in the UK.
Read more in the briefing on the ATC website here.
Blog: More detail needed on patience experience changes
In this blog, Jacob Lant, chief executive at National Voices, shares his hopes for more detail and direction on the government's plans to “put patient choice, voice and feedback at the heart of how we define and measure quality". Jacob says the government's plan for the role of patient experience includes some important commitments but is lacking detail on how the changes will be delivered. He hopes The National Quality Strategy (currently under development and due for publication in 2026) will set the direction on how the sector might coherently measure and use patient experience.
Jacob highlights how there is already a wealth of patient experience data to work with, including 1.5 million people contributing to national surveys every year and feedback from patient information and advice services among others. Jacob adds: "So whilst I support the 10 Year Plan’s direction on patient experience, to make it work the Quality Strategy really needs to start with a good audit of what is being captured and how it is being used at the moment."
Read the full blog on the National Voices website here.
Blog: Language can help or hinder partnership working
In this blog for the King's Fund, researcher Loreen Chikwira discusses how creating a new shared language that is meaningful to all partners can lead to cross-sector partnership success. Loreen has been working on the Healthy Communities Together (HCT) programme, a partnership between The King’s Fund and The National Lottery Community Fund. The programme was set up to understand and address some of the barriers to partnership working that have been identified between voluntary and statutory organisations. Loreen said: "For example, a common complaint we heard from members of the partnerships was about the use of language and jargon that was exclusionary to others and created power imbalances between organisations and communities. On the other hand, when it is co-created by all partners, language has the power to strengthen partnerships. A shared language emerges out of relationships based on trust and a willingness to learn and unlearn."
Read the blog in full on the King's Fund website here.
New anti-racism resource for health and social care staff
A new resource for the health and social care sector in Scotland aims to strengthen race equality, support staff and guide managers in addressing racism. The Anti-Racism in the Workplace Toolkit has been developed by the Coalition for Racial Equality and Rights in collaboration with NHS Scotland, social care partners and the Scottish Government. The toolkit brings together six practical guides grounded in extensive lived experience evidence, including input from more than 2,200 health and social care staff. The guides place the voices of those affected by racism at the centre, offering clear, actionable steps to improve workplace culture and strengthen anti-racism practice across the sector. The resource also aims to equip organisations with the understanding needed to tackle the root causes of racial inequality. An in-person training session is available on request to all organisations in Scotland’s health and social care sector.
Find out more via the Health and Social Care Alliance Scotland (the ALLIANCE) website here.
Study: Young people's perspective of co-production
A study examined what young people involved in a mental health research programme considered as "meaningful co-production". An online open-ended survey and a focus group were held to get young people to reflect on a 3-year UK youth mental health programme that embedded youth involvement and co-production from the outset. Two central themes emerged from the research – "We just want to be cared about": Co-production is caring, and "Please, show up as a person, not as a researcher": Co-production as a dialogic process.
Young people emphasised that meaningful co-production, in youth mental health, is relational and affective (i.e., rooted in emotional care, mutual respect, flexibility and dialogue) and the living experience of mental health is continuous and demands sensitivity. The study concluded that meaningful co-production in youth mental health research requires embedding relational ethics into design and practice, ensuring young people are engaged as whole persons and partners.
Read the study via the Wiley website here.
Embracing creative approaches to digital training for midwives
In this article for Digital Health, Jennifer Lyons, digital clinical lead – maternity at University Hospitals of Northamptonshire, says more innovative ways are needed to deliver essential digital training to midwives. Jennifer says unprecedented pressures and heightened scrutiny on maternity services has resulted in the introduction of numerous reporting tools, safety measures, new initiatives and changes to the way care is provided. While the transition to digital systems has brought significant benefits, Jennifer says it has also introduced new challenges including having a workforce with varying levels of digital skills and abilities and additional risks, such as cyber security threats. Jennifer developed an innovative training programme to actively engage staff while using the digital system during her previous role as lead digital midwife at Oxford University Hospitals Foundation Trust. The programme took the form of a tabletop escape room game and has been blueprinted by NHS England to enable wider adoption.
Read the full article on the Digital Health website here.
New resource to support people affected by cardiac arrest
A new discharge resource to support people recovering from cardiac arrest, along with their families and friends, has been published by Resuscitation Council UK (RCUK), in partnership with Save a Life Cymru. The resource forms part of RCUK’s ongoing commitment to ensuring everyone affected by cardiac arrest has access to clear, practical information and support throughout their recovery journey. It has been endorsed by NHS England, NHS Scotland and NHS Wales. The resource explains what happens during a cardiac arrest, how it differs from a heart attack, and why early CPR and defibrillation are vital in saving lives. It also outlines what survivors can expect during their recovery and signposts patients and families to further information, professional help, and peer support available through RCUK’s Support After Cardiac Arrest webpage.