Dear all,
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
i need your help
Moderator: administrator
Re: i need your help
Hi Ivo and welcome to the Board ...
its great that you are looking to make things better and easier for patients when facing CKD ...
though I think it would be better for those here if you told us a bit more ...
we all have some stories to tell in one form or another ...
so some stuff affects us in a very similar way ...
but this forum has folk from far and wide ...
so explaining which country you are from and therefore which healthcare system you are hoping to improve might help us ...
and you ... when its more specific to how the healthcare is affecting the patient journey ...
the fact that you use the term 'GP' suggests that you are UK based ...
its great that you are looking to make things better and easier for patients when facing CKD ...
though I think it would be better for those here if you told us a bit more ...
we all have some stories to tell in one form or another ...
so some stuff affects us in a very similar way ...
but this forum has folk from far and wide ...
so explaining which country you are from and therefore which healthcare system you are hoping to improve might help us ...
and you ... when its more specific to how the healthcare is affecting the patient journey ...
the fact that you use the term 'GP' suggests that you are UK based ...
Re: i need your help
Yes, I agree with Rik and some info about you would be nice if you are expecting us to share
Re: i need your help
Hi again Ivo ...
although the forum has many peoples stories already ... its spread through the pages ...
it has been suggested that this could be a really useful thread for all to read ... and I whole heartedly agree ...
but as I said before ...
it would help if you gave us a bit more information about yourself and what you hope to gain from this ...
and for who ...
if maybe you are a little shy and it helps ... I could get the ball rolling for you ...
for example ...
I may have been wrong to think you were UK based ... it seems you may be a little further from further out of town than that ...
and I understand you won quite a prestigious award as a student this year ...
this forum is many and varied ... but over all ... its honest ... and trusting ... because we have to take people at face value ...
Ivo ... we do have the introduction thread ...
or you could just tell us here ... who you are ... what you do ... who you work for ...
quite genuinely what you would like us to help you with ... and what it is really for ...
then you are far more likely for us to be open and honest with you and tell you our histories ...
although the forum has many peoples stories already ... its spread through the pages ...
it has been suggested that this could be a really useful thread for all to read ... and I whole heartedly agree ...
but as I said before ...
it would help if you gave us a bit more information about yourself and what you hope to gain from this ...
and for who ...
if maybe you are a little shy and it helps ... I could get the ball rolling for you ...
for example ...
I may have been wrong to think you were UK based ... it seems you may be a little further from further out of town than that ...
and I understand you won quite a prestigious award as a student this year ...
this forum is many and varied ... but over all ... its honest ... and trusting ... because we have to take people at face value ...
Ivo ... we do have the introduction thread ...
or you could just tell us here ... who you are ... what you do ... who you work for ...
quite genuinely what you would like us to help you with ... and what it is really for ...
then you are far more likely for us to be open and honest with you and tell you our histories ...