This article was first published at healthandcare.scot

Politicians will meet with kidney patients and clinicians later today in Edinburgh to discuss next steps for chronic kidney disease. 

Led by Kidney Research UK, the chronic kidney disease (CKD) summit will give Scotland’s Cabinet Secretary for Health and Social Care Neil Gray MSP the opportunity to hear from people at every stage of the CKD journey. 

Patients, doctors, and charity and industry representatives will address the Cabinet Secretary, Public Health Minister and health spokespersons from Scotland’s political parties at the first-of-its-kind event. 

Ahead of the event, a patient who discovered she had CKD when it was already progressing to kidney failure says she is losing faith in Scotland’s health leaders. 

Angela Riley was diagnosed in 2020 after going to the doctor with worries about her heart. She was unaware her type 2 diabetes put her at a greater risk of kidney damage. 

Less than two years later, she is on dialysis three days a week and is now battling to join the transplant waiting list. 

Angela, who will speak at tonight’s summit, says she is frustrated at the lack of progress towards improving diagnosis and care:

“Our systems don't do enough to warn people about the risks to their kidneys from conditions such as diabetes and heart disease, or educate people about reducing their risk. 

“Every day someone goes undiagnosed, their kidneys deteriorate, and they risk joining the 2,300 people like me who rely on dialysis to stay alive.”  

The ‘Kidney Health in 2035’ summit comes 10 months after an expert group supported by charity Kidney Research UK published an action plan for tackling CKD and the rising numbers of patients nationally.  

It sets out urgent measures to detect CKD earlier, strengthen support in primary care, and help the around 600,000 people living with the condition in Scotland to live well. 

The action plan was welcomed by Scottish government ministers at the time. 

However, Angela says she and others involved in developing the plan believe too little has been done since: 

"This evening's summit can’t be just another talking shop. We need concrete commitments from government and all political parties on this. 

“There’s a tsunami coming. More than one in 10 people in Scotland has CKD but roughly a third of them don't know it.”

A generation of damage 

Angela adds that patients should not be made to wait longer for the changes already identified and put to politicians: 

"This evening's summit can’t be just another talking shop. We need concrete commitments from government and all political parties on this.  

“Nothing’s going to change for my generation – the damage has been done. 

“But there are people 20 years younger than me who need these improvements to be put in place so they’re not in the same situation as I am now. And that’s not to mention the growing cost to the NHS.”  

University of Edinburgh Professor of Experimental Nephrology and consultant nephrologist, Jeremy Hughes, who helped draw up the action plan, recalls a similar exercise took place 20 years earlier. 

Professor Hughes says the failure to act back then has harmed patients across the country and CKD has been “ignored” for too long:

“In the early years of the new parliament a group of patients and eminent colleagues asked for CKD to be made a priority by the then government. 

“The health of tens of thousands of people like Angela has been impacted by the decision to ignore that recommendation.  

“CKD is common but many people are diagnosed late or remain undiagnosed, especially in underserved communities.  

“We all know how to avoid the tsunami: raise public awareness of kidney disease, screen those at high risk, support and educate patients, and prescribe treatments that protect kidney function and can delay the need for dialysis or a transplant.”

Professor Hughes adds that addressing the essential areas detailed in the plan will be good for the patient, but also for Scotland’s NHS and wider economy: 

“Kidney disease has no cure and dialysis is challenging, whilst kidney transplants still fail. CKD In Scotland is currently costing the economy more than £0.5bn a year; without government intervention this could rise to more than £1bn by 2033. 

“Current ministers and future decisionmakers must give CKD the urgent attention it requires. It has simply been ignored for too long.”