ESRD Patient Stakeholders meeting

Discussions for Patients, Family, and Friends HD For Patients
1

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.

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?
2. What challenges to patients face at the dialysis facility?
3. How can ESRD Networks reduce disparities of care among minorities
and ethnic groups?
4. What patient experiences will best optimize ESRD patient care,
treatment, and options?
5. How can the Networks best support facilities to help patients who
have trouble following their treatment plans?

I’ll make a list of answers I get from y’all, so please tell me what to share with Medicare on your behalf.

Dori

2

Hi Folks

Hi Dori

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.*
Sincerely,*
David Moskovitz*

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 “”

Dori[/QUOTE]

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

Bob OBrien

3

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.*

I’ve been always on the side of PROTOCOL…but…on the side of the patients protocol… who’s health superceeds all

4

[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.

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?
2. What challenges to patients face at the dialysis facility?
3. How can ESRD Networks reduce disparities of care among minorities
and ethnic groups?
4. What patient experiences will best optimize ESRD patient care,
treatment, and options?
5. How can the Networks best support facilities to help patients who
have trouble following their treatment plans?

I’ll make a list of answers I get from y’all, so please tell me what to share with Medicare on your behalf.

Dori[/QUOTE]

Hi Dori,
Just wondering why Medicare is asking these questions. Aren’t these the same questions that have been asked time and again? The question should be why doesn’t Medicare take patients concerns seriously? I’d gladly share my opinions/ideas, I have many times already, but seems like an exercise in futility. Is there any true change in the air as far as Medicares responsiveness to patients?

5

Hard to say, Jane. You are right that they hold these Stakeholders’ meetings every year. I don’t think that the questions are the same, though. Whether anything will change is anyone’s guess, but my take on it is if we do nothing, nothing will change. If we’re the drip of water on the rock, eventually we will see some movement. The new Conditions for Coverage offer a real chance for change, especially the education requirements. And a bill just past to cover some CKD education, so no doubt folks will figure out a way to go after that, and will hopefully do a good job (it’s not that hard to beat no education at all, but it IS hard to do a good job telling folks about HOME options).

I can’t just sit around and do nothing, I have to try to get changes made. And I’m not very patient. :smiley:

6

Hi Folks

Hi Dori

Do you know if anybody else is going? Like Bill ? These meeting are like the are folks in DC when they hold meetings or the new way of town hall phone calls. My rep in Dc (Jim Gerlach) has these town phone calls. The big problem , I get his newsletter, but there is never anything about the next phone calls, no date , no time, and the big problem, when they call ,we have caller ID the phone # shows up as out of area. So I have no way knowing who is calling. I don’t understand why there isn’t a site that would a yr in advance tell about meetings or at least 6 months. That what is so problematic . most people can’t drop everything at the last second.
I wish you the best of Luck

[QUOTE=Dori Schatell;16584]Hard to say, Jane. You are right that they hold these Stakeholders’ meetings every year. I don’t think that the questions are the same, though. Whether anything will change is anyone’s guess, but my take on it is if we do nothing, nothing will change. If we’re the drip of water on the rock, eventually we will see some movement. The new Conditions for Coverage offer a real chance for change, especially the education requirements. And a bill just past to cover some CKD education, so no doubt folks will figure out a way to go after that, and will hopefully do a good job (it’s not that hard to beat no education at all, but it IS hard to do a good job telling folks about HOME options).

I can’t just sit around and do nothing, I have to try to get changes made. And I’m not very patient. :-D[/QUOTE]

thanks
bob obrien

7

Dori, who’s going to subsidize my trip? I’ll be right at your side.

It’s unfortunate that none of the points you outlined above directly relates to home dialysis, because that’s the real answer to bettering patients’ treatments and outcome. Nd finally reports are becoming available to support home therapies.

I’ll try to make a few comments on the agenda’s questions.

  1. What characteristics would your ideal dialysis facility have?
    My own room with my own machine, chair, computer, TV and stereo.

  2. What challenges to patients face at the dialysis facility?
    You’ve got to be kidding. How about surviving a slow death instead of living and fulfilling a productive life. How about getting through a treaatment without some incompetent tech putting you in danger. How about not cramping and crashing. The list goes on.

  3. How can ESRD Networks reduce disparities of care among minorities and ethnic groups?
    How about by treating people eqaully and making sure that quality healthcare is available for all.

  4. What patient experiences will best optimize ESRD patient care,
    treatment, and options?
    Home, home and home with an occasional vacation.

  5. How can the Networks best support facilities to help patients who
    have trouble following their treatment plans?
    Quite frankly all patients, whether home or in-center, should be compliant with their treatment plan. But the answer lies in more education. People need to know what the consequences of their actions are. But that also assumes people aren’t depressed and haven’t given up hope. I’ve seen those that just don’t care anymore. It’s another reason for helping people go into dialysis with a positive attitude. Once again – more education.

8

Hi Folks
Hey Rich ,

Your right on that all these things tend to be “in center with the idea ''help the provider ,so that the provider can better help the consumer.”"

It will not be till Cms and insurance companies, understand and push the providers to get the consumer that can go home to at least try home.

maybe if center had areas set like some centers I’ve heard of where a person could try doing self dialysis with a nurse or a good tech nearby for anything that might come .

When I was in center I saw men & women who looked and from talking to them. Could very well take care of home dialysis. But the consumer came right out and said ''Why should I do this at home when it easy to just come ( monday wednesday, friday) here and have some set up everything etc.

One of things that has puzzled me is why CMS and insurance companies havn;t. I guess up till nxstage came along the machines may have been harder to learn and took up more space than some folks could deal with ?

Anyone out there tells us about pre nxstage?

Have a great labor day…
bob obrien

9

[QUOTE=Dori Schatell;16584]Hard to say, Jane. You are right that they hold these Stakeholders’ meetings every year. I don’t think that the questions are the same, though. Whether anything will change is anyone’s guess, but my take on it is if we do nothing, nothing will change. If we’re the drip of water on the rock, eventually we will see some movement. The new Conditions for Coverage offer a real chance for change, especially the education requirements. And a bill just past to cover some CKD education, so no doubt folks will figure out a way to go after that, and will hopefully do a good job (it’s not that hard to beat no education at all, but it IS hard to do a good job telling folks about HOME options).

I can’t just sit around and do nothing, I have to try to get changes made. And I’m not very patient. :-D[/QUOTE]

Dori,
Rather then responding to the questions CMS has posed for their latest Stakeholder’s meeting, I would prefer to make a statement to CMS for you to deliver for me. The questions posed are redundant- these are questions that should of had answers decades ago! I feel that there is something awfully wrong with the makeup of CMS and the networks as there does not seem to be a true representation of the patients they are there to serve.

At one time, I served as a patient representative on my network’s PAC ( Patent Advisory Committee ). I found it to be a total waste of time as the same questions were asked with little to no action. At the rate this network was going, it would of taken until the next century to accomplish anything for patient care!

I also previously worked with a patient advocacy group that went right to the horse’s mouth and asked one of the top officials at CMS why enforcement of federal regulations was so poor. We were told that it is a misnomer that the networks are to advocate for the patients. Instead, we were advised that each state must form advocacy groups to press for enforcement. A few states have such groups, but this is not realistic, in my opinion, as dialysis patients, as a group, are too ill to facilitate such groups. I believe CMS knows this and I would like to know from CMS why they haven’t ensured a plan to make sure their own regulations are strictly enforced?! And patients must have a platform by which they can report clinic abuses/fraud without the fear of retribution.- their anonymity and uninterruption of life-giving txs must be ensured!

In conclusion, as the ESRD program is currently set up, it is a deadly trap for patients. Too many clinics are cesspools of filth ( surveyors do not see this when they conduct surveys??), staff are inadequately educated/trained and education of patients is non-existant. Patients are literal hostages held in a dependent state. There is nothing more threatening to improvement of patients’ health then bogus answers to their questions from dialysis staff that are incompletely educated/trained- thus patients are lead astray into wrong directions with their care. Every person who responds to this years’s questions will mention these points. The question is, why have these conditiins been allowed to go on and on for so many years? I would like to know what CMS is going to do to make sure their regulations are enforced, and when? I find this agency to be very remiss in it’s duties. Who monitors CMS? I am calling on CMS to clear up the issue of why enforcement is so ineffective allowing dialysis companies to get away with abuses and fraud on a daily basis with patients’ rights dismissed and unprotected?

10

Thanks, Jane, I will pass that on!

11

Hi Folks

Hi Jane
You state what you were doing ,so what is the group doing to help change this? Are they really after Rights, and not just more money for the providers?
Thanks
Bob O’Brien