Kidney Peer Support – Patient Story
Joan, a peritoneal dialysis patient at Salford Royal, writes about her experience of providing peer support and why she thinks it is a great idea.
I was a happily married woman with three grown up step daughters whose life was dramatically changed one day in 2006 when, as I was going to work, I gave an almighty sneeze. Immediately I felt a pain in my back. Initially I thought I’d pulled a muscle but I had collapsed two vertebrae. This was caused by myeloma, a little known blood cancer that affects the plasma cells. It also affected the kidneys. Whilst on chemotherapy I went into renal failure and was on haemodialysis. Although initially I got some kidney function back by September 2008 I was back on dialysis – this time peritoneal dialysis.
I can remember the day I was told I would be on dialysis for the rest of my life. I felt the world had come to an end. However as time went on I adjusted to it and indeed now lead a very active life. I think this was recognised by the community nurses and initially I was asked to join with them at patient information days. I felt there that my experience showed that life continued. So at a later date I was asked by the nurses if I would be willing to be a mentor to people who were also going to have peritoneal dialysis.
I was very happy to take part and went through the volunteer training programme and had an individual induction with one of the Community nurses so that I had a contact point if any problems should arise. I was very pleased to have the opportunity to give something back as I have received tremendous treatment and support from the NHS.
Although the nurses and medical staff are very good I think it helps to be able to speak to someone who has gone through similar experiences. When I was diagnosed with myeloma the nurse put me in touch with another patient and I found conversations with her most helpful. I hoped therefore that I would be able to do the same for people with dialysis.
To date I have only really supported one patient, although another I had a conversation with as they were deciding whether to have haemodialysis or peritoneal dialysis. With the patient I supported, this involved email and telephone contact and I have never met her. We did however find it easy to talk and she expressed her concerns and fears to me. I think she found it helpful to talk to someone who understood but was neither clinical staff or close family as it is difficult to express fears to them.
I think being a peer supporter means that you can help others who are going through similar experiences. It can make you feel valued too. You have to be careful not to give advice but just to listen and in some cases reassure. By sharing your experiences too you can give them hope. I would encourage anyone about to start on a course of treatment, be it dialysis or transplant, to talk to another patient who has been through it. I think just sharing experiences is a really valuable resource.
If you are thinking of becoming a peer supporter, I would say grab the opportunity. You will not only find that you help the person you support, but also improve your own confidence and feeling of self-worth.
I would say being a mentor is interesting, valuable, and enjoyable. Go for it!
If you would like to learn more about the Peer Support programme for patients across the Salford Royal kidney community, check out the information here or contact Jane Ascott (Peer Support Nurse) at Jane.Ascott@srft.nhs.uk.
Watch the new video with Eleri Wood, a peer support nurse from King’s College Hospital, who answers questions on what peer support is and its benefits here.