Failure to recognise the seriousness of CKD is costing lives

Diabetes and high blood pressure are the two leading causes of chronic kidney disease (CKD), yet a new Kidney Care UK report published today highlights that almost two thirds (65%) of people with diabetes and hypertension (who went on to be diagnosed with CKD) were not made aware of their kidney risk before diagnosis.

In addition, data shows that almost 40% of people with diabetes are missing out on simple urine tests that can identify early signs of CKD and help people access treatment that can delay progression.

All CKD stages are associated with increased risk of death, cardiovascular disease and the need for kidney replacement therapy (dialysis or kidney transplantation).

CKD needs more prominence in primary care

Yet CKD’s lack of prominence in health policy is costing lives; 22 people a day are diagnosed with kidney failure, yet almost one in five (18%) of people who start kidney replacement therapy have only seen their kidney specialist for the first time within the previous 90 days.

This is considered late presentation, meaning that preparation and surgery for dialysis have to start urgently and suggests opportunities to treat early and delay progression were missed.

An unplanned start to dialysis is associated with up to fivefold more healthcare expenditure than a planned transition, as well as an increased chance of death.

There are new tools (such as the Kidney Failure Risk Equation) available to estimate people’s risk of kidney failure within the next five years, and treatments which can not only delay progression but also reduce risk of dying from cardiovascular complications.

Government must ensure CKD is on the health agenda if people are to benefit from these developments, for example by including CKD more prominently in the Major Conditions Strategy.

Understanding chronic kidney disease

Around 1 in 10 of the global population have chronic kidney disease (CKD)9 and it is estimated half of those are undiagnosed.

In the UK, more than seven million people are thought to have CKD; around 3.7 million people have early CKD (stage 1 and 2), with approximately 3.5 million at the later stages (3 to 5). Around one in 50 people with CKD ends up with kidney failure, which requires dialysis or transplant.

Fiona Loud, Policy Director of Kidney Care UK, said: “The number of people with CKD in the UK is expected to grow significantly over the coming decade because of an ageing population, increasing prevalence of type 2 diabetes and hypertension. Our report shows that there are huge opportunities to improve support for people in the early stages of chronic kidney disease to maintain their health and delay the risk of kidney failure for as long as possible.

“Kidney disease is simply not seen as a priority. It is barely mentioned in the Major Conditions Strategy; there is no national CKD audit; just one CKD indicator in the GP reward and incentive programme; and a lack of prominence in national health policy programmes. This is unacceptable and has to change now. Not only because people living with the condition are shouting from the rooftops that kidney disease needs more recognition and awareness but also because it’s putting lives at risk and unsustainable – and unnecessary – pressure on the NHS.”

I believe that it is crucial that patients are signposted to where they can find reliable information and guidance, given that this type of support is not always available to patients that are at risk.
Ruban Nathan, kidney patient and recipient of two transplants

Working with GPs to help people understand the risks of CKD

There are some innovative projects around the country where GPs are working with hospital kidney specialists to make sure people with CKD are receiving excellent care. But this report shows more needs to be done for everyone with CKD to get the care they need.

  • Helping people understand their CKD risk encourages engagement with monitoring and care, yet in our survey, one in 10 GPs never – or rarely – advise their patients with diabetes or blood pressure about their risk of chronic kidney disease.
  • Our survey also highlighted that only 13% of GPs with patients who have diabetes and 14% of GPs with patients who have high blood pressure say they always advise their patients about their risk.
  • Over 1 in 10 (12%) of GPs did not feel confident in talking to people with CKD about likely progression of their disease.

Ms Loud concludes: “People must be told about their chronic kidney disease and have regular checks to measure any changes in kidney function. When we asked them, people with chronic kidney disease told us clearly that they want to take control of their kidney health. It is time to change the dynamic on kidney health and take simple steps to save lives, and it’s time to talk kidneys.”

The Let’s talk kidneys – opportunities for early intervention in chronic kidney disease report produced by Kidney Care UK highlights the importance of early diagnosis, treatment, and education for patients living with chronic kidney disease. One of the report's key findings is the lack of awareness and understanding among patients. This is exemplified by over 6 in 10 individuals with diabetes or high blood pressure not being informed of their increased CKD risk before diagnosis. This underlines the importance of enhancing patient education and engagement, ensuring that those in high-risk groups receive the necessary information to monitor and manage their kidney health effectively. The report's emphasis on collaboration between Integrated Care Systems (ICSs), health care providers, and patient representatives is pivotal in creating a holistic CKD prevention and management strategy. The NHS has a wealth of data that can used to identify gaps in monitoring and coding for CKD. The NHS England Renal Service Transformation Programme provides local systems with a toolkit and additional resources to facilitate the delivery of the recommendations highlighted in this report. The proposed measures, including annual testing and appropriate monitoring, align with the overarching goal of early intervention and prevention. The report also highlighted examples of good care around the country which can be adopted across other areas. Importantly, the report underscores the necessity of supporting individuals in taking control of their kidney health through tailored advice and resources. The call for clinicians to provide personalised information at the time of diagnosis and the integration of kidney health information into tools like the NHS App reflects a patient-centric approach, empowering individuals to make informed choices. We must heed this call for change from our patients and their carers.
Prof Smeeta Sinha MBChB FRCP PhD, National Clinical Director Renal Medicine NHS England
This timely report highlights the importance of raising public awareness, reducing missed opportunities for earlier diagnosis and treating and supporting people to manage their own long term conditions. Earlier diagnosis of kidney disease with a simple urine and blood test and communication of a person's risk of needing dialysis or a kidney transplant will help to guide care for people living with kidney disease.
Dr Rupert Major, Honorary Associate Professor at University of Leicester and Consultant Nephrologist at University Hospitals of Leicester
Early identification and risk stratification in primary care is crucial. Time constraints and resources in primary care can be a challenge for optimising CKD management whilst dealing with large number of patients often with frailty and co-morbidities. Therefore, integration of the Kidney Failure Risk Equation calculator into Primary Care IT systems would help to assist primary care clinicians making an accurate assessment of risk and optimising their management.
Dr Rajib Pal, a GP based in Solihull
Download the Let's Talk Kidneys Kidney Care UK Report