Taking the kidney cause to Holyrood
We're calling on the Scottish Government to tackle kidney disease as a core priority.
In the first of a new wave of activity aimed at the UK’s decision makers, we are asking people across Scotland to support our drive for a national strategy to combat chronic kidney disease (CKD).
Based on the recommendations of our recently published report: Changing the future for chronic kidney disease in Scotland, our Ken Yer Kidneys campaign reveals that change is urgently needed as the number of kidney patients is growing fast. The number of people in Scotland who are reliant on dialysis or transplants to stay alive has more than doubled in the past thirty years. Kidney Research UK believes Scotland needs a systematic approach to identify everyone at risk of CKD, to detect CKD early, and to overhaul the use of data and digital platforms to join up care and treatment.
In September we organised a virtual roundtable event, bringing together patients, clinicians, researchers and representatives from the Scottish Renal Registry, the Scottish Donation and Transplant Group, the Clinical Trials Network and the UK Renal Data Network.
Participants were asked to share their experiences and expertise to identify opportunities to transform outcomes for people with CKD in Scotland. Their testimonies showed that kidney disease is often invisible and overlooked within the country’s healthcare system.
Patients are falling through the net
Our report revealed that Scottish kidney patients often fall through the net when it comes to diagnosis, particularly in lower socio-economic and ethnic minority communities. CKD is often diagnosed by accident, as a result of investigations into other conditions that require blood and urine tests, meaning that many patients are diagnosed too late to prevent kidney failure.
Previously, people who were more at risk of CKD could be tested for it at their GP surgeries, but this routine practice ended after a change to UK-wide policy in 2015. As a result of this there is no appropriate early-stage data to make decisions to tackle CKD and support patients.
Scotland also does not have any up-to-date clinical guidelines on treating CKD, so medics have to rely on recommendations from the National Institute for Health and Care Excellence (NICE), which are based on reporting mechanisms in England. Scottish guidelines are needed to provide clarity on clinical standards and responsibility.
“With little appropriate data and inadequate measures for a timely diagnosis, patients are being let down,” says Bushra Riaz, Kidney Research UK’s policy lead for Scotland.
“Opportunities to prevent or delay the onset of renal failure, allowing patients to live a full life for longer, are being missed. We urgently need a national strategy for Scotland that makes CKD a clinical priority with a focus on early diagnosis.”
We need a standardised approach
Angela Riley and Jamie McGregor are both patients who took part in the roundtable.
“If you have CKD you should have access to high quality treatment, regardless where you live, but that’s not happening and that’s shocking,” says Angela, who volunteers for the charity as a community ambassador.
Unaware that her diabetes could lead to kidney problems, Angela was diagnosed with CKD in 2020. Recently forced to take early retirement due to ill health, she is now preparing to start dialysis with some trepidation.
“If we had standardised guidelines people would be better educated about kidney disease and patients would be able to get help sooner,” she added.
Lay Advisory Group member Jamie McGregor received a life-saving kidney transplant in 2017 after acute kidney failure resulted in him spending over four years on dialysis.
“We need to increase the visibility of kidney disease within Scotland to ensure that everybody realises that this is a serious issue. We need to share our experiences with the public and with politicians because I don’t think many people really understand what the kidneys do, what can happen when they stop working properly, what dialysis actually involves and how it can affect your life,” says Jamie.
Creating change across the UK
“We believe that kidney disease should be seen as a core priority in all four nations of the UK,” says Alison Railton, head of policy and external affairs at Kidney Research UK.
“We must keep shouting about kidney disease to drive progress towards better kidney health and ensure it becomes and remains a priority for governments.”
Dr Sandesh Gulhane MSP, shadow health minister said: "As a practicing GP, I’m really keen to see chronic kidney disease detected early within primary care so that we can keep patients as healthy as possible for as long as possible. With many kidney patients diagnosed too late to prevent kidney failure, we need to change the way we do things in Scotland. That’s why I’m supporting Kidney Research UK’s campaign for a national strategy that can transform kidney health in Scotland.”
Make your voice heard
Help us raise the volume around kidney disease in Scotland. Take our e-action and contact your MSPs: share your own personal experience of kidney disease, and urge them to support our Ken Yer Kidneys campaign.
Ken Yer Kidneys
We're calling on the Scottish Government to tackle kidney disease and support a national strategy to combat chronic kidney disease.