Your right most folks on dialysis can’t stop and drop everything and run off to here and there. It like if your on dialysis, the people who you see at the your center want you to drop everything and only do as they want and when they wanted it, no matter the cost or time it takes out of your life. I don’t think in my life the answers will ever happen. The issues have been heading at us for yrs and yrs. And there is too much money on both sides to make real change, at least overnight. It just like the two notice why not send people out into the as many areas as they can ,with months of notices. Why , they will say it cost too much, and we can get a real handle on it by talking to a handfull of people to speak for millons.
[QUOTE=Dori Schatell;16574]Hi y’all,
Medicare only gave about 2 weeks notice of a meeting in Baltimore (9/4) about the ESRD Networks for patients & patient advocates. I was told thatcenters don’t have real pt. advocates.When I asked this question, the soc. worker said that they (soc. worker) were the pt. advocate
If you live in the Baltimore area and want to go to this meeting, you can register by checking out the info on this page: http://www.esrdncc.org. (Click the link for 8/28 meetings).
If you don’t live in the Baltimore area and can’t go–as I suspect most folks can’t, I’m going, and I’d love to hear from you. The agenda has these questions:
1. What characteristics would your ideal dialysis facility have?
That when a person walks into a center that the person understands that they are in a medical center,not a warehouse.
2. What challenges to patients face at the dialysis facility?
From the top ,down people (larbor) that see things are not right and don’t fight for the proper care of the person with the illness. The person with the illness has the illness to deal with first and foremost before they can take an active role in things going on around. Plus it not like the person on dialysis has only dialysis going on, more than anything dialysis is just one issue that there are dealing with.
3. How can ESRD Networks reduce disparities of care among minorities
and ethnic groups? Once more this has to start at the top and be the centers goals. It won’t work if the folks at the top are too concerned about cost. ( I had a spanish speaking gentleman across from me and he had no one to help with talking about his issues. I was told that centers can’t afford to bring in people to speak every language)
4. What patient experiences will best optimize ESRD patient care,
treatment, and options? The sense that the people who are working there don’t do more complaining than the folks on dialysis.
5. How can the Networks best support facilities to help patients who
have trouble following their treatment plans? Define tx plans and trouble? From a larbor stand point most pts. give them issues. From the pts point it larbor that has the most issues. I think this is a world issue between larbor and mangerment ( or in this case pts and the company bottom line)
Reply I got from network 4
Hi Mr. O’Brien,
Please don’t misunderstand my email.* There may not be a law, but if you decide not to follow the nephrologist’s or facility’sprescription for follow-up care, they can decide to terminateyour home care because you were non-compliant with the protocol.They may suggest that you come to have dialysis at the facility. That is why it is important to play by the rules. Please do not jeopardize your relationship with the facility or nephrologist. I make the suggestion that a compromise of some sort be made.* Please remember that maintaining your health is the most important thing to everyone.*
You know what I wanted ? Too see my own Dr, (seeing since 2000) and go to a Davita center that he worked out of after my training for home dialysis. Davita said it would mess up the billing. By the way the only reason I email the network ,was due to the fact that the folks at Davita would not listen to my concerns, I had talked with them before going to network. Silly me thinking that what was posted on the walls at center were true.
I’ll make a list of answers I get from y’all, so please tell me what to share with Medicare on your behalf.
The problem started from the get go just like all the issues we are dealing with today. Two sides , one thinking we need to fix the health care so all peole are covered and the other side that want the people to pay for their own health care. This tells part of the story, but this is a problem thought out the entire system. This just speaks on medicare"http://www.nytimes.com/2008/08/22/opinion/22fri1.html?_r=1&ref=opinion&oref=slogin “”
I wish you the best luck and hope you get to really speak on behalf of not the centers that are doing a good job ,but that there are still centers that are not.
Thanks for time