One in 4 people are unaware of main signs of disease set to be fifth biggest global killer

New data released today by the UK’s leading kidney patient support charity, highlights an alarming lack of knowledge of the main signs of chronic kidney disease (CKD), with 1 in 4 (29%) unable to identify the seven main signs of a loss of kidney function – compared to a UK average of 27%.

In response, charity Kidney Care UK is urging people to take their five minute online Kidney Health Checker to understand their level of risk and take action to prolong their kidney health as part of their #BloodyAmazingKidneys campaign.

The campaign has the backing of 51-year old Lois Denham, a kidney transplant recipient from Paisley:  “Most of us probably haven’t really heard of Chronic kidney disease but I had symptoms – I was exhausted, and I mean really exhausted, not just tired, but constantly.

“Along with this I also had brain fog. Before I had my transplant I was vomiting up to four times a day including through the night. It was horrendous.  However, I continued to work almost full time right up to the day before my transplant.  But it wasn’t until I had my transplant in January 2023 that I realised just how awful it had been before that. I had just got used to it, it had been so long.” 

“Now, thanks to the most wonderful and precious gift from the most incredible person, Josh, I now not only more energy, but I’m also well.  I’m able to do and experience so much more. I actually get to live a full and happy life thanks to the selfless generosity of my big hearted friend.  I will forever be grateful to him.

“But the point is, that I didn’t know I was at such risk, or how kidney disease could develop itself, what the repercussions would be not just to me health wise but on my family, on my ability to just do everyday things.  

“I have polycystic kidneys and I was being monitored. So if you have risk factors like high blood pressure or diabetes or an underlying kidney condition then please, take it seriously. Get yourself checked out and take the advice that doctors give you so you can try and live a healthier, fuller life for longer.  

“Like the campaign says, your kidneys are amazing – but you could be losing kidney function without even knowing.”  

The most common signs of CKD are: cramps, itchy skin, dietary changes (food tasting different to how it does normally), nausea and/or vomiting, exhaustion, changes to your wee and swelling of your ankles/legs or face.

Our research also showed that:

  • Just over a third of people (36%) do not recognise that changes to your wee can be linked to kidney disease.
  • Around three quarters (73%) do not realise that itchy skin is a sign of kidney disease.
  • Three quarters (76%) do not realise that muscle cramps are a sign that your kidneys may not be working properly.
  • Over half (64%) of people in Scotland do not know that puffy face, or swollen ankles/legs is a sign.
  • Only 47% of people recognise that exhaustion is a sign.

CKD currently affects 1 in 10 people – equivalent to more than 7 million people in the UK – but 1 million of those are not even aware they have CKD. 

Diabetes and high blood pressure are the two leading causes, but more than 70% of people with high blood pressure do not have an annual urine test for CKD; furthermore  45% of people with Type 1 diabetes and 32% of people with Type 2 diabetes do not have their annual urine test for CKD. Unless urgent preventative action is taken to improve diagnosis and treatment rates, CKD is predicted to be the fifth leading cause of death globally by 2040..

Fiona Loud, Director of Policy at Kidney Care UK, said: “We want to see at risk groups in Scotland screened for CKD as early as possible. Delay in the diagnosis of moderate to advanced CKD by just one year results in a 63% higher likelihood of kidney failure requiring costly and burdensome treatment to stay alive, such as dialysis or a transplant.

“This also has a significant effect on people’s mental health and on their ability to work.  Whether people are identified early or late, there will always be a cost to the NHS; but by identifying people sooner more can be done to prolong their kidney health, improve their quality of life and reduce the impact on health and other services.”

Whilst age-based screening is offered for people aged 40 to 75 via the NHS Health Check, only half of all people invited for the NHS Health Check take up the offer. Innovations such as the new digital health check programme may make it easier for people to engage with their health. However, it’s important to note that people with pre-existing conditions such as diabetes aren’t included in the health check programme.

Laurie Cuthbert, Director of Fundraising, Marketing and Communications at Kidney Care UK, added: “We are concerned that a lack of symptom awareness amongst the general public in Scotland, combined with a fear of not wanting to burden their GP, means that some are at risk of losing as much as 90% of their kidney function without realising or taking simple steps to look after their kidney health.

“We hope that our #BloodyAmazingKidneys campaign will help raise awareness of the Bloody Amazing role they play. By empowering individuals to take control of their kidney health, we want to ensure that more people are diagnosed sooner and ultimately never reach kidney failure.”

Take 5 minutes to protect your kidneys today: 

www.kidneycareuk.org/KidneyHealthChecker

Clinical trials for chronic kidney disease

New partnership for pioneering kidney health research

Clinical trials to accelerate research into treating chronic kidney disease will be strengthened as a result of a new partnership between the Scottish Government, academia and industry. 

NHS Scotland, AstraZeneca and the Universities of Dundee and Glasgow will work together on new medicines to slow the progression of chronic kidney disease, reducing the risk that patients might need dialysis or kidney transplantation.

The partnership will allow for development of new treatments to treat chronic kidney disease, build infrastructure and enhance expertise in renal clinical trial delivery in Scotland with the key aim of improving patient outcomes.

Preventing progression of the disease allows people to live longer, better lives, free from other consequences of the condition such as heart failure, cardiovascular disease and stroke. This allows people to work, contribute to their communities and economy, while reducing pressure on the NHS.

Cabinet Secretary for Health and Social Care, Neil Gray, said: “This project’s ‘triple helix’ approach is a shining example of how collaboration between the NHS, Scottish Government, academia and industry can accelerate health studies. As we navigate the complex issue of chronic kidney disease, our commitment to patient-centred research remains unwavering.

“Together we can advance targeted studies into medicines that slow progression of the disease and reduce the need for dialysis or transplantation, strengthen our workforce through dedicated research fellows and specialised training, provide greater opportunities for patients, and enable Scotland to attract and deliver more innovative trials.”

Professor Dame Anna Dominiczak, Chief Scientist (Health) at Scottish Government said: “I welcome this partnership with AstraZeneca which builds upon the excellent research infrastructure and expertise we have in Scotland, to drive the development of new treatments for chronic kidney disease.

“We must all work together to improve the outcomes and life circumstances for people living with kidney disease; and this partnership enables the fusion of medical expertise, knowledge, and insight from across NHS, academia, and industry.”

Tom Keith-Roach, AstraZeneca UK President, said: “Scotland is setting a bold ambition to change the trajectory of chronic kidney disease. We are thrilled to invest in a partnership with the University of Glasgow, the University of Dundee, and the Scottish Government to speed up the study of three potential new combination medicines to treat this disease.

“The triple helix of industry, academia and NHS Scotland is a powerful force with the potential to transform care and outcomes for people.

“Furthermore, we believe Scotland is well placed to collaborate with AstraZeneca to shape our research on the world stage across a number of disease areas and attract investment to the country’s thriving Life Science sector.”