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Late diagnosis causes irreversible and major harm to kidney patients

14 March 2024

Urgent opportunities to diagnose life-changing kidney disease are being missed, with patients left unaware, uninformed and unprepared for the devastating diagnosis, our research reveals on World Kidney Day 2024.  

We commissioned a survey of kidney patients in February this year, which found that the later patients were diagnosed, the greater their likelihood of ‘crashlanding’ onto dialysis, causing maximum disruption to their lives, harming their mental health, their work prospects and their household income.

Around half of the 1,371 respondents reported having at least one known risk factor for kidney disease such as high blood pressure or diabetes before their diagnosis. Of these people, a staggering 53% received no warning that their kidney disease could become far more serious, suggesting that opportunities to prevent patients sliding into kidney failure were being missed. 

Half had risk factors

Stephen's story

Stephen Blom, a 45-year-old former competitive cyclist from Paisley, spoke to us about the devastating and life-changing impact of his diagnosis, and the missed opportunities for the disease to have been detected earlier. Stephen went to his GP after catching lots of infections and feeling tired all the time. He explained: “Each time I felt the urge to urinate, nothing was coming out. The doctors did a series of tests. They noticed that I had high cholesterol and high blood pressure, and they tried to put it down to my lifestyle. I fiercely argued the point that I was a competitive athlete, I watch what I eat and drink.”  

Stephen fought for a series of tests that eventually resulted in his stage five kidney failure diagnosis and within weeks was on regular dialysis treatment to stay alive, his life turned upside down. Post-diagnosis, Stephen asked his GP why this wasn’t raised as a concern previously and was informed that it had simply been overlooked. 

The impact of late diagnosis

Patients receiving dialysis treatment usually spend four hours at a time, three times a week attached to machines that replicate the role of the kidneys. The treatment itself and the after-effects have a significant impact on patients’ ability to work, socialise and live a normal life. Whilst a transplant is the best current treatment, not every patient will be eligible and six people in the UK die every week whilst on the waiting list.

Patients like Stephen that are diagnosed late can be described as ‘crash-landers’ as they can need almost immediate dialysis treatment with little time to prepare. Two-thirds of survey respondents on dialysis said they had started treatment within just three months of being informed they would need it. Almost half did not believe they had enough time to prepare practically and/or mentally for the demanding treatment and abrupt change in lifestyle. 

The consequences can be really tough, as Stephen’s experience shows. “I sunk into depression because things were taken away, I couldn’t go back to my sport, my whole body shape changed. My life was now all about diet control, fluid restriction, going on this terrible treatment. I lost all my friends, because I wasn’t socialising, and a lot of my family didn’t really know how to deal with it either.”  

Not enough time to prepare for dialysis

Survey results are alarming

With the research revealing more than 60% of patients were already experiencing moderate to severe loss of kidney function by the time they were diagnosed, earlier testing  and intervention are crucial in halting the progression of kidney disease, said Alison Railton, head of policy and external affairs at Kidney Research UK: “Newly recommended drugs can slow down kidney disease progression but not only are too few eligible patients being offered these, many patients are also missing out on valuable time to protect their kidneys due to late diagnosis.   

“The results from our survey show, alarmingly, that patients are unnecessarily suffering due to late diagnosis. And we know the number of patients in the more advanced stages of kidney disease is projected to grow by almost 700,000 within ten years if drastic change is not made.” 

Dr Kristin Veighey, who is both an academic GP registrar and a consultant nephrologist based in Hampshire, says there are numerous issues contributing to the reasons why people are diagnosed at a far later stage than is ideal: “It’s so important that we’re able to look at the overall trend of people’s kidney function over an appropriate period of time in order to spot a worrying decline and intervene.  

“GPs understand the importance of testing at-risk patients – early diagnosis and intervention is a key part of our role – but we need the resources to deliver it.” 

Alison Railton continued: “Government must invest in prevention and early detection and equip GPs to test people at risk of developing kidney disease to identify those who could benefit from  medications and advice. Last year, we issued a report sounding the alarm that kidney disease is on the cusp of becoming a public health emergency that could cripple the NHS, with the number of dialysis patients predicted to increase by almost 400 per cent by 2033. The time to act is now.” 

Spread the word

Thank you to everyone who took part in our survey.

Please help spread the news and signpost your contacts to our kidney health check, so more people can find out if they are at risk of kidney disease and avoid late diagnosis.

Take our free online kidney health check today.

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