Hansard

I thank each member who signed my motion, and I thank Kidney Care UK, the National Kidney Federation and Kidney Research UK for their briefings to members for the debate. I warmly welcome their representatives to the public gallery, along with representatives of the Scottish Kidney Federation.

Our kidneys are our bodies’ silent workhorses. They filter our blood to remove waste, excess fluids and toxins while regulating blood pressure, balancing electrolytes, producing hormones for red blood cell formation and activating vitamin D to strengthen our bones. However, our kidneys seldom receive the recognition that other organs do. That is despite the fact that chronic kidney disease is set to become the fifth biggest cause of premature deaths globally by 2040.

Modelling by Kidney Research UK suggests that, in Scotland, more than 600,000 people—11 per cent of our population—may be living with some degree of kidney disease, much of it undiagnosed. According to data from the Scottish renal registry, 5,732 people in Scotland were receiving kidney replacement therapy as at the end of 2023. Of those, 3,491 had functioning kidney transplants and 2,241 were receiving dialysis. Behind each of those numbers is a story about human suffering.

One CKD patient said:

“Kidney disease is insidious. It creeps into every aspect of your life. Not only that it slowly robs you of your life.”

Another said:

“The condition plays a huge part in your daily living. Need to work, can’t work, depression, worry, anxiety, relationship issues. Life in general can be hard.”

Employment rates for people on dialysis are just 26 per cent. Between 2022 and 2032, people with CKD are projected to lose 81.6 million work days across the United Kingdom, with 11.9 million work days missed by their carers. The number of people who are on dialysis in Scotland is likely to increase significantly over the next decade, while current pre-emptive transplant and peritoneal UK dialysis rates remain below pre-pandemic levels. The direct cost of kidney disease to NHS Scotland last year was £566 million—the sum is expected to reach £1 billion by 2033 without Government intervention.

Improving kidney care is, therefore, not just clinically necessary but financially prudent. A focus on prevention, earlier diagnosis and greater use of home dialysis and transplantation can reduce the reliance on hospital-based care, with all its associated costs. Home haemodialysis is clinically and consistently safe and effective at lower cost than in-centre dialysis, while offering patients and their families greater independence and quality of life.

However, in Scotland, only 12.2 per cent of dialysis patients receive home dialysis. That is the lowest percentage across the four nations, and significantly lower than the UK average of 16.9 per cent. While NHS Grampian recently expanded access to home haemodialysis across Aberdeenshire, Aberdeen and Moray, uptake elsewhere in Scotland remains low. In Glasgow, home therapy uptake is only 7.2 per cent.

A more consistent and ambitious approach is needed to expand equitable access to home dialysis. That is especially important in rural and island Scotland, where transport remains a critical issue for patients who are required to travel for in-centre dialysis three times a week to receive life-saving treatment. Unlike in other parts of the UK, there is no national framework in Scotland to ensure a consistent service for transporting people to dialysis centres. That must change.

Six Scottish health boards told Kidney Care UK that access to all the modes of in-centre dialysis transport that they provide is needs-assessed, while six others told the organisation that their transport is open to everyone travelling to and from in-centre dialysis. Worryingly, almost two thirds of kidney healthcare professionals who were surveyed had concerns about the transport arrangements that their facility had in place for patients travelling to and from in-centre dialysis. I know that patients, their families and those who work with them would greatly appreciate a commitment from the Minister for Public Health and Women’s Health to provide guidance and support to health boards to enable them to assist patients with vital transport needs.

We must also recognise the psychosocial toll on people with kidney disease and their families. Sadly, too many people with CKD feel that they are left to get on with it alone. Kidney Care UK’s recent survey of adults living with kidney disease revealed that 73 per cent of patients who need psychosocial support from their NHS kidney team do not receive it, and 69 per cent said that such needs had never been formally assessed. There is a real and pressing urgency to ensure that specialist support is available to all who require it, regardless of where they live.

Improving access to kidney transplantation is also critical. Transplantation offers the best outcome for many patients, yet the transplant waiting list is at its highest level ever and transplant rates remain below pre-pandemic levels. In 2023, 265 patients received a kidney transplant, but more than 480 adults remained on the waiting list as of March 2024. That is deeply concerning. Every missed opportunity for a transplant is a chance lost for someone to live a fuller, healthier life. The transplant pathway needs to be strengthened, including with better support for living donation.

CKD is one of the most prevalent and serious long-term conditions in Scotland, yet it arguably remains largely absent from national health planning. The Scottish Government’s own consultation paper on its forthcoming long-term conditions framework acknowledged that kidney disease is one of the few major conditions with no national strategy. The kidney charities that are represented in the public gallery today, and others, are calling for the introduction of a national CKD framework. Such a framework would cover prevention and early detection; patient involvement in care; support for children and young people; effective management of chronic and acute kidney conditions; and better end-of-life care.

The organisations also want CKD prevention and treatment to be a clinical priority, with annual testing for those who are most at risk, access to appropriate medications and lifestyle support to delay progression. I trust that the minister will address those asks in responding to the debate.

Before I conclude, I highlight the bloody amazing kidneys campaign by Kidney Care UK. Since the campaign’s launch in October 2024, around 200,000 people have completed the online kidney health checker, with around half identified as being at increased risk of CKD.

The campaign has reached national health service networks, public health clinics and even the European Renal Society congress. It is a helpful, albeit scary, reminder that you can lose up to 90 per cent of your kidney function without realising it. Symptoms are often vague, or are mistaken for other conditions. I encourage everyone to find out whether they are at a lower risk or an increased risk of developing kidney disease.

I pointed out earlier that other areas of health concern steal the spotlight, so to speak, while kidney health struggles in the shadows to receive the attention that patients deserve. That is changing. In May, the World Health Organization passed its first-ever resolution on kidney health, recognising it as a global priority. The time for the Scottish Government to place a national and strategic focus on kidney health, and to ensure that every person with CKD has access to the care, support and treatment that they need, is now.

I am pleased that colleagues will talk of the life experiences of constituents with CKD, and I look forward to hearing those stories.