UK diabetes and kidney charities team-up to establish key research and healthcare recommendations for diabetic kidney disease
A new paper, published in Diabetic Medicine, co-authored by Diabetes UK, Breakthrough T1D (formerly JDRF) and Kidney Research UK has identified six themes to tackle diabetic kidney disease (DKD). The paper follows a workshop held last year that brought together healthcare professionals, academics, charity representatives, and people living with diabetes and/or kidney disease and provides a focus on finding ways to improve kidney health for people living with diabetes and developing treatments to reduce kidney damage.
Diabetic kidney disease
Diabetes is the leading cause of kidney failure in the UK, with around one in three people living with diabetes developing DKD during their lifetime. High levels of sugar in the blood can damage the small blood vessels and tiny filters in the kidneys. Over time, people living with DKD can progress to kidney failure and may require dialysis or a kidney transplant. They are also at high risk of heart attack, stroke and even early death.
In 2022, there were nearly 520,000 cases of chronic kidney disease (CKD) as a complication of diabetes. It was also reported that patients developing kidney failure due to diabetic nephropathy make up 30% of all patients starting kidney replacement therapy in England and Scotland.
Gaps in healthcare for DKD
Despite its prevalence, people with diabetes often receive little information about the causes, management, and prevention of DKD. We also know that essential care is not being delivered to everyone that needs it.
Receiving vital healthcare checks, known as the eight care processes, l has been shown to reduce the chances of developing many complications of diabetes, like DKD. Urine testing (uACR testing) can provide early warning signs of kidney problems before other symptoms appear, as well as being used to continually monitor kidney function as they detect high levels of protein in the urine. The uACR test is one of the eight care processes that should be completed each year for patients living with diabetes. But in 2022/23, around 1.6 million people living with diabetes did not receive their essential health checks in England alone - including checks for kidney damage.
People from the most deprived areas and those from ethnic minority backgrounds, are less likely to receive their essential health checks for both type 1 and type 2 diabetes. As well as this, women, people from Black heritage communities and people living in the most deprived areas are less likely to get tests and treatments for kidney disease.
Anna Morris, Assistant director of research at Diabetes UK, highlights the need for greater investment in research focused on eliminating the unacceptable health inequalities seen in diabetic kidney disease (DKD). She says: “Funding research in this area will generate high-quality data, increasing our understanding of the roots of health inequalities in all areas of DKD. This will open the door to fresh interventions to transform DKD prevention, diagnosis, and management for those who need it most. The importance of an annual kidney check for all individuals with diabetes cannot be overemphasised. Ensuring equal access to these checks is a vital part in addressing existing health inequalities.”
This workshop identified the gaps that remain in our understanding of DKD, including how to effectively prevent and manage the disease, and highlight key areas of research where more funding is needed.
Key research themes
During the workshop, people with lived experience of diabetes and kidney disease shared their experiences of diagnosis and care, demonstrating the scale of the challenges that people living with DKD face.
Daniel Newman has lived with type-1 diabetes since he was ten, and his kidneys subsequently failed in 2018, and reflected on his patient journey and the need for progression of research in this area "Managing chronic kidney disease (CKD) alongside type 1 diabetes has been a complex journey. It is vital to establish links with underserved communities to empower individuals like me to advocate for coordinated care and shared decision-making. Participatory action research is key to developing strategies that improve many aspects of a CKD diagnosis including medication adherence and care delivery. Personalised treatment approaches that consider the diverse subtypes of kidney disease and embrace multi-ethnic perspectives are essential for meaningful progress."
Following interviews with experts by experience living with diabetes and/or CKD, quotes from patients were collected and grouped to help identify which areas of patient care the workshop should focus on to investigate research themes.
The six key research priorities are:
- Understanding causal mechanisms in diabetic kidney disease
- Prevention of diabetic kidney disease
- Addressing health inequalities
- Improving diagnosis
- Improving care
- Supporting self-management
This collaborative paper also presents some research recommendations, to drive forward our understanding of the gaps in research into diabetes and kidney disease. These include, defining the barriers to achieving personalised prediction and prevention tools, identifying and reducing health inequalities which lead to underrepresentation in research and differences at all stages of care, and empowering people to understand their conditions and support self-management. A summary of recommendations for each theme can be found in the table.
Dr Caroline Schmutz, Head of research partnerships at Breakthrough T1D UK, said: "This important exploratory paper sheds light on the many challenges presented by diabetic kidney disease (DKD), from screening and diagnosis through to treatment and care. Insights from people with lived experience of DKD demonstrate the lack of awareness that kidney disease is a complication of diabetes, as well as how invasive and impractical treatment options are. Detecting DKD early is instrumental to its prognosis. But we know that routine testing of kidney function is not happening, leading to missed opportunities for prevention and early intervention. We are calling for systematic changes, including consistent screening for signs of kidney damage and increased funding for research to improve our understanding of this complications and develop better treatments."
Next steps for the partnership
This paper reflects the collaborative effort between Diabetes UK, Breakthrough T1D and Kidney Research UK to prevent people with diabetes from experiencing kidney damage. Tracey Murray, Director of programmes at Kidney Research UK emphasises the value in charity collaboration. She says: “This call to action for further research into key aspects of diabetes and kidney disease is timely and urgent. Too often we hear stories from people who didn’t know that they needed to actively look after their kidney health and whose end stage kidney disease could have been avoided.
"Together as a community we must prioritise:
- improving health literacy and awareness of the importance of kidney health with people living with diabetes
- ensuring that everyone eligible is provided an annual uACR test
- investing in research to unlock new discoveries so we can improve how we can prevent, protect and treat DKD
"Developing kidney disease as a complication of diabetes does not have to be inevitable – we already have many of the tests and interventions to protect kidney health. We must make sure these are available to all.”
Following this workshop, work has already begun to address challenges experienced by patients through targeting health inequalities and education of health care professionals to detect and diagnose kidney disease earlier.
Continuing their collaboration, in February 2025, Diabetes UK and Kidney Research UK ran a session at the Diabetes UK Professional Conference (DUKPC) entitled ‘Recognising the Past and Rebuilding Trust in Research and healthcare: health inequalities, owning the past and how to do better’. The session was aimed at educating both healthcare professionals and researchers on several key areas. These included understanding the historical context of inequity in research as well the lived experience of people living with diabetes and CKD, and the roles of healthcare professionals, policy, community engagement projects and charities in addressing health inequalities in healthcare.
Diabetes UK and Kidney Research UK have also joined forces to address the challenge of improving diagnosis (recommendation 4K) through targeted education for healthcare professionals working in primary care. The online CPD module will highlight areas including the importance of uACR testing as well as improving the care patients receive when visiting their GP surgery for management of DKD enabling healthcare professionals to review their understanding and access guidelines and resources on DKD.
Kidney Research UK and Breakthrough T1D are also supporting self-management by improving awareness of kidney disease in the type 1 diabetes population through producing online patient resources. By understanding the need for uACR tests at their yearly check-ups, individuals can feel more confident to ask for tests to be completed and understand the importance of the results, to make sure kidney disease is detected and diagnosed earlier.
Diabetes UK, Breakthrough T1D (formerly JDRF) and Kidney Research UK are continuing to work together in this space to improve the lives for individuals with diabetes and kidney disease. We are working collaboratively to increase investment, support researchers and health care professionals to address the research recommendations and help give experts by experience (people living with diabetes/kidney disease) a voice in improving their experiences- this workshop is just the start!
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