Lea’s story: prescription issues and chronic kidney disease (CKD)

Lea was diagnosed with a rare kidney condition called IgA nephropathy when she was 10. She has had two kidney transplants; the first lasted seven years, and the second five years.  

Between her transplants, Lea had haemodialysis treatment for her kidney failure. During this time, she received free prescriptions.  
  
However, after her second transplant failed, Lea started peritoneal dialysis, a different treatment, and had issues with her prescription charges as a result.  
  
Lea shares the struggles she has had with prescription charges and explains what she would like to be done differently. To read Lea’s full story, head to Kidney Care UK.  
  
“I never had an issue with getting free prescriptions at any point when I was on haemodialysis (HD) or when I was post-transplantation, but when I started peritoneal dialysis (PD), I was told I was no longer exempt from paying for my medications.  
  
“To get free prescriptions, you have to fill and sign a medical exemption certificate and then give that to the GP to co-sign. When I started PD in February 2024, I still had a previous medical exemption certificate, but it ran out in October 2024. So, I got a new form from my GP surgery and filled it out. 
  
“On the form, it explains that you are entitled to a medical exemption certificate if you have a “fistula which needs continuous dressing or an appliance”. I figured that I need to sterilise and clean my PD tube every other day, so I ticked that section. A few days later I was told that my GP had refused to sign it off. 
  
“I was in total shock, and I started panicking when I was denied the exemption. My GP didn’t even talk to me about it, it was all done through the receptionist. I explained to the receptionist why I thought I should be exempt, but I was just told that I wasn’t eligible. They said that because all the equipment I need for PD is provided through hospital, that it wasn’t anything to do with the GP surgery and they suggested I ask the hospital to co-sign. I felt like I was just left on my own to figure it out.  
  
“I rang my PD team, and they told me that they were happy to sign the form. It was a relief, but I was angry that I had been messed around.  I got the impression from my kidney team that is a regular occurrence for people with PD. Thankfully, I managed to get it sorted before I had to start paying for my prescriptions. 
  
“My GP never contacted me to explain why they wouldn’t sign the form. I think that if he had spoken to me, he would have seen my point of view. I wonder if he even knows what having PD treatment means.  
  
“I think it’s crazy that my GP decided that receiving haemodialysis means I was exempt from paying for prescriptions, but having peritoneal dialysis didn't. That is what I find unfair. With PD I have a tube in me all the time, I am more at risk of infection, I have to sterile clean around the tube. Why would I not be entitled to a medical exemption from paying prescription charges? 
  
“I’d like PD to be recognised as being worthy of exemption by everyone. A lot of people just accept what their health professional says but I wasn’t going to stand for it. I can’t understand why my GP said that my PD treatment wasn’t covered when it is keeping me alive. If I didn’t do dialysis, PD or HD, that would be the end of me.”