Young transplant patient brings kidney health crisis to Westminster
MPs and Peers were confronted with the stark reality of kidney disease this week at a parliamentary reception we hosted this week, when 15-year-old patient Charlie Frieland described how it had stolen his childhood. His powerful testimony helped underline our call for urgent action on kidney disease, a growing health crisis that can no longer be ignored.
Diagnosed at age eight with the rare genetic condition nephronophthisis, our supporter Charlie spent more than 7,500 hours – equivalent to 315 days – across thousands of dialysis sessions before finally receiving a life-changing transplant in March this year. Now, he has fulfilled his goal of attending Parliament, speaking to MPs including Wes Streeting MP, Secretary of State for Health and Social Care, on behalf of other children living with kidney disease.
“I didn’t want an adult to speak for me,” Charlie told the room. “I’m lucky, I’ve been handed back my childhood. I can live my life away from dialysis and can start to explore what my new normal looks like. I don’t know how long this will last because a transplant isn’t a cure. I’ll always live with kidney disease, and I know that I’ll have to one day face dialysis again. That’s why your help is so important.”
Sharing the reality of dialysis treatment
Speaking afterwards, Charlie revealed that he'd missed the equivalent of more than a full year of school whilst having dialysis, saying:
“You’re not really allowed to complain about kidney disease. But the truth is, dialysis is awful. It’s isolating, exhausting, and frightening. I used to start every day being sick. I’ve passed out during treatment. I missed nearly 2,000 hours of school. This transplant has given me my life back – but so many others are still waiting.”
The event, attended by parliamentarians, healthcare leaders, and patients, highlighted the escalating burden of kidney disease, which costs the UK an estimated £7 billion a year and is projected to rise to nearly £14 billion by 2033. This financial toll, combined with rising patient numbers and increasingly stretched services, presents a real risk of kidney disease overwhelming parts of the NHS without urgent intervention by the government.
Attendees heard how kidney disease now affects over 7.2 million people in the UK – many undiagnosed – and how urgent reforms are needed to improve early detection, reduce treatment delays, and offer better, more accessible treatment options.
The reception received cross-party support and included remarks from Wes Streeting, who described Charlie’s address as “the most inspiring speech I’ve heard in a very, very long time.” He said the event underscored “why so many are here today – this is about life and death, opportunity and loss, and the need to put patients at the centre of care.”
Better outcomes are possible for kidney patients
With earlier diagnosis and improved pathways onto dialysis, experiences like Charlie's don’t have to be the norm. More timely support and better planning before dialysis can mean better outcomes for patients, with dialysis fitting around people's lives, not the other way round.
Kidney Research UK is calling for:
- Earlier diagnosis through simple kidney checks in primary care and community settings
- Wider access to home dialysis for those clinically able
- Focused prevention strategies for those most at risk, such as people with diabetes and high blood pressure
- Greater use of digital tools to support self-management, especially in underserved communities
Call for government to back take action
For Charlie, speaking in Parliament was a longstanding ambition realised. “Before my transplant, I made a bucket list, and this was on it,” he said. “I just hope it helps make things better for other children living with kidney disease.”
Kidney Research UK’s chief executive, Sandra Currie OBE, praised Charlie’s bravery and called for the government to back urgent action, saying:
“Charlie has given a voice to thousands of people living in silence. Today, he stood in Parliament and told us the blunt reality: dialysis is not enough. It keeps people alive, but not well. If we want to give people like Charlie the chance to live – not just survive – we need to act now.”
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