[QUOTE=Dori Schatell;10971]Hi y’all,
Bobleleanor, I’m not Beth, but perhaps I’ll do. I agree with you completely. The only other aspect of care I can think of where patients MUST “comply” (NOT my word) or face punishment is treatment for resistant tuberculosis. Sometimes patients are put in isolation or supervised to be sure they are taking their meds because they could harm others if they are contagious. Nothing else comes readily to mind.
IMHO, in-center dialysis = outpatient institutionalization. The center is an institution, much like a nursing home, hospital, mental health facility, etc. Power is concentrated in the hands of professionals, and patients are largely powerless–unless they learn a LOT and gain the respect of their care providers.
I’m not surprised to hear that you have saved your own life, probably more than once. People are human, mistakes DO happen, and if you don’t know enough to correct them, they can, on occasion, be fatal. Knowledge truly is power.
Beth did answer your question in dialysis, though, when she said:
.
Centers are not allowed to discharge patients for “non-compliance”–most of which, I’d wager, is caused by poor education so folks don’t know why it’s in their own best interests to get their full treatments or not be fluid overloaded. And, some “non-compliance” is no doubt caused by patient-provider conflicts that make people unwilling to go to the center.
Your anger is understandable, but anger is FUEL. The question is, can you find a way to use it productively to help change things for the better?[/QUOTE]
Hi Dori
I understand in center needs to have consumers try hard to follow the rules set up for there own good. My point is not about being in center but home consumers. Since my trip into dialysis started I have try very hard ,not for the center sake, but for my own sake. But from the start the company that I’m with has made it more diffcult than it has to be, by speaking, nothing is put on paper. I have machine that will record phone calls, not my doing ,the company has called me (manager) and told he was going to discharge me from home program. I let him in same phone call I needed that on paper. No paper as yet this three weeks back. I have let this company know that I will tape record any and all phone calls from this point on. No more phone calls. I do not have time to play games, which from the ESRD letters that I have seems to be name of the tune. “Play by rules and be nice” this from ESRD.
On what you think to be anger. I let go by since you do not know me. I look at it as standing up for my rights. I understand a good bit about anger and being pissed off and all the rest. These are for kids or adults that lack a understanding of issues. Like people who feel that a person is angry without first talking to the person face to face. Maybe you have not had anyone stand up for their rights. Maybe you like people who play by the “Rules and are Nice” You yourself admit that the dialysis world for the most is behind in the thinking on consumer care. And how long have you and other groups been working on changeing people thinking?
I’m really not angry, I just want some respect. I will be going back to my doctors that have knowed me for most of my life. My history is to much for these people. They do not understand and don’t seem to care about other health issues.
Have a Good Day
bobeleanor