Working together with Sharing Haemodialysis care - My Peer support role

Hi, my name is Daniel and I am a volunteer trainer support for dialysis patients at Salford Royal Hospital. I was first diagnosed with Alport's syndrome at the age of 12 so I knew at some point in my life my kidneys would fail. By the age of 24, I was on regular dialysis. Despite knowing this day would come, I can still say it came as a bit of a surprise. Shock, fear, anger and sadness were just some of the emotions I felt. I thought my world looked grim, my independence was gone and my life was now in control of the nurses who took care of me. However, I was quickly introduced to Shared Haemodialysis Care.

So, what is Shared Haemodialysis Care? Simply put, it is involving yourself in your own care and well-being, be it simply doing your own blood pressure, to setting everything up, putting yourself on dialysis and taking yourself off afterwards. Some people ask why? Well for me it meant I was taking control of my own life again. I was learning about my own health, I was saving time getting on dialysis and I was helping out the nurses who can get a little run off their feet. My negative emotions turned into more positive ones. Pride, independence and self-worth were a few of the emotions I felt as I had taken back some control of my life.

So here I am today, transplanted and 4 years into volunteering at the same hospital I had my dialysis at. As a patient volunteer I find that I can emphasise with others. I have walked the walk and been in their shoes. My primary role is to train patients how to do some of their dialysis tasks and it is something I can dedicate my full time to.

When I introduce myself to a patient, I tell them a little a bit about myself doing shared care and the benefits I found from involving myself in my own treatment. I make sure that they know they can choose how much to do and how fast they wish to take things. I find that because I have experienced it myself, patients will give Shared Care more thought than if a nurse suggests it to them. Using my own experience as a patient I can give them tips and tricks that I used, especially when it comes to things like managing fluid, after all I know myself I kind of got sick of hearing a nurse tell me to suck an ice cube even though I knew it was just them looking out for me and trying to help. As well as teaching patients what they wish to learn, I also give support by listening to them and their troubles and offering advice as a previous dialysis patient. I find that just having someone who can relate to them can help ease their worries and anxiety.

July 2018