What do pts want?

I posted on the role of soc. worker and Dietitian. Got a lot on soc. worker. Not much on dietian.

Dori posted this "
Actually, the Life Options program, which the MEI has run since 1993 (I’ve directed it since 2000) was the first to ask patients what their experiences with their care were, and what they wanted. We did a series of interview studies (a total of 90 patients) in 1998, and the results were published in Nephrology News & Issues. Since then, we’ve done a couple of dozen other studies, mostly with patients, but also with professionals. And in 1997, I joined the dialysis_support listserv (it’s on Yahoogroups.com). In that time, it’s grown from about 250 to more than a thousand members, and it’s an amazing source of information and support–plus a way to keep my finger constantly on the pulse of what patients want. __________________
Executive Director
The Medical Education Institute, Inc.

      so my question what do pts want? lets not get into money for company. If people workering in dialysis don't think there is no money Quit.


I want there to be no dosage restrictions - I think you should be able to receive as much dialysis as often as you and your care team decide you need. To provide this incenter would require some kind of dialysis on demand structure.

I envision freedom for future dialysis patients. Away from the clinic…the nano tech and all ideas that come with it will enable diaysis patients to live a more comfortable life. Most of us don’t want to sit in the chair for hours. We want freedom!

Hey Bill , Gus

I look to the same . But like Beth and Dori have posted , I want more education, not so much on pts part. You can see that pts are dam smart, just read the posts on this one board. I found that it was the doctors , renal nurses, techs, soc. worker, dietians, that need to be educate on the fact that not all pts are the same. I think Dori and Beth both have said that there are still too many doctors nurses etc that need to think outside the box. I want to just go to my doctor once every 4 months.

I have left davita and will start with a non profit on 4/8/07 to start esd on nxstage. I will update after I get at least a month under my belt.

I agree with all also, I too think that Nephs, Nurses, etc need to think outside the box.
I am very greatful that our clinic from the CEO right down to the techs, and the machine techs are always willing to listen and implement ideas that patients come up with( as long as it is safe).
Our center is like a dream!
I am on the NKFof NENY patient and services committee with “Professionals” from area dialysis centers and whern I tell them what is going on in our center they are blown away.
They just do not realize what is out there.
We really do need to EDucate them!!
New York State Legislature just did a legislative initive to have NKF work with our NYS Health department to put to gether a task force to Education the communities. I hope to get on this Task Force because I will also put my 2 cents in about educating the Dialysis community as well.