Patients and clinicians are calling on the Scottish government to right a 20-year wrong and commit to turn the tide on a progressive and potentially fatal kidney condition which affects more than one in ten Scots.

A working group convened by Kidney Research UK will launch a new action plan making a series of recommendations to improve the diagnosis and treatment of chronic kidney disease (CKD) in Scotland.

The plan, to be unveiled at a meeting in Edinburgh this evening, attended by Scotland’s public health minister,  includes measures to improve the monitoring of people with diabetes and heart disease who are at most risk of CKD, support GPs and other primary care staff to lead on diagnosis and management, and ensure patients can access specialist emotional, practical and digital support.

It comes 20 years after an opportunity to take forward a national plan for CKD was turned down by the then-Health Secretary – a decision working group members say has had serious consequences.

Professor Jeremy Hughes, Professor of Experimental Nephrology at the University of Edinburgh, NHS Lothian consultant nephrologist, and chair of the Kidney Research UK in Scotland CKD working group, said:

“It is possible to build a better future for people with CKD and this action plan shows the government how this can be achieved. This investment is vital to avoid the looming nightmare of thousands more people requiring exhausting, expensive dialysis, as predictions based on existing data show. Embedding and prioritising CKD in government and public health policy is the only way forward.

“In the early years of the new Scottish parliament, patients and eminent colleagues asked for CKD to be made a priority by the then government. Tens of thousands of people have been affected by the decision to ignore that advice. Now is the time for a new Scotland-wide focus on CKD.”

Back in 2004, a similar group of doctors and patients came together in a Scottish parliament cross-party group to warn that, without government action to support early diagnosis and treatment – both considered key to slowing the progression of CKD – the personal and economic toll of the disease would continue to grow.

Change yet to happen

Since 2004, the number of people in Scotland whose kidney failure is treated with transplants or dialysis has increased by almost 60%.

Treating all stages of CKD now costs NHS Scotland almost £0.3bn a year.

Professor Andy Rees, former president of the Renal Association of Great Britian and Ireland, was vice convener of the former Cross-Party Group on Kidney Disease which ran from 2002 to 2004. He said:

“We believed back in 2004 that the only way to ensure people with chronic kidney disease had quick and equitable access to the right treatment was through a national plan.

“The Health Minister at that time told us that a national plan was not the best way forward and that the Scottish government would instead seek alternative ways to drive improvements for people with CKD.

“Twenty years later and that positive change is yet to happen.

“This action plan from a new group of clinicians and patients asks for many of the same things: for earlier detection of people with CKD, improved management of people with CKD and joined-up data and IT to improve services.

“Scotland simply cannot wait another 20 years for change.”

Receiving an early diagnosis of kidney disease at 14 years old enabled Stephanie Nicoll, from Livingston, to slow the progression of the disease and drastically reduce its impact on her life.

When she went to her GP with swollen feet, a simple urine test identified the presence of protein, an indicator of kidney disease.

A kidney biopsy then found she had a rare form of kidney disease called C3 glomerulonephritis (C3GN).

Stephanie, now 41, said:

“I was lucky that medication and monitoring slowed the decline of my kidneys, and they lasted until I needed a transplant, nearly twenty years later. While not everyone has visible symptoms like I did, some people have obvious risk factors like diabetes and heart disease.

“With better pathways, such as those outlined in this plan, more people could be helped to stave off kidney failure – it shouldn’t just be potluck.”

 

healthandcare.scot is pleased to be working in partnership with Kidney Research UK in Scotland through our communications consultancy, Ettrickburn.

Read more: MSPs to question kidney disease priority status; Investigating inequalities in kidney care; Renal research needed to advance care, says nurse; Eye provides a window to kidney health;

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