my name is Ivo and I am working on educational material and supportive services for people on dialysis suffering from CKD. For this, I need your support
I am wondering, if you guys could tell me your story. How have you been diagnosed with CKD or renal failure (was it a GP or a nephrologist?). What happened when you were diagnosed, have you been educated on the medical aspects of CKD? If so, how did this happen, what material did you get and who provided it? What happened the first time you were on dialysis? How do you get to the dialysis centre? when did you get in touch with a dietician the first time? how is the relationship to the nurse, nephrologist? How frequently do you or the general patient see them? What are you struggling the most in your daily life (dialysis day and non dialysis day)?
Let me know EVERYTHING that comes to your mind and where something should be done.
also if you have a specific idea.My goal is to set up a so called generalized "patient journey" to identify all the touch points with healthcare professionals, where problems exist, where patients need more support etc.
I am looking forward to hear your stories and ideas.
Best wishes,
Ivo