Proposal from Dialysis Joe for Eliminating the ESRD Network

General : The Renal Networks are Failing Providers and Patients

From: Dialysis Joe (Original Message) Sent: 3/3/2006 11:48 AM

Presently, fifty cents out of every dialysis treatment goes to support one of the Medicare/CMS contracted renal networks. Originally, the intent was that these renal network organizations would oversee the care provided to the Medicare ESRD dialysis patients throughout the United States. This was supposed to assure that a baseline level of quality of care would be administered by all providers, all across the United States.

Well, the program is a dismal failure. What you have are organizations that have continually cut services to the ESRD community since their inception. To make matters worse, the providers that the networks are supposed to oversee fill their vital boards and committees with provider representatives. Now, this isn’t all bad, since there are many individuals from the provider ranks who genuinely desire to improve the lot of all patients in their networks. Unfortunately, deadwood has accumulated in the leadership of these networks and the original goal to improve care has become a sham. Simply put, like many organizations with free government money and little oversite from Congress, it has become a party for those at the top of these organizations.

The leadership and employees of these organizations pay themselves large salaries, eat the best foods at the best diners and, during meetings, put themselves up in the best rooms, sometimes penthouses, of the best hotels. It has become an orgy of fiscal glutteny at the expense of the American Tax Payers.

The bottom line is that the renal networks have become useless organizations that exist only for themselves. They are nothing more than political awards and favors that allow small groups of people to suck at the teet of our Medicare system. Think about it, almost 300,000 in an ESRD system requiring dialysis three times a week, fifty two weeks a year, with the networks receiving fifty cents out of every Medicare treatment, which comes out to an estimated $24,300.000.00 per year, give or take a few million. The fact is that that those funds could have a better use for the patients of the Medicare ESRD system.

Presently, United Health Care has a division called United Health Group. Within this division is a nurse call system. Within this system is seven nurse call stations located throughout the United States. These call centers provide United Health Care, other insurance providers, managed care companies and certain contracted employers with 24/7 nurse call services.

So, you may be asking, what does this have to do with improving the quality of care for ESRD patients? Well, hundreds of thousands of dollars are saved by making sure that healthcare dollars are managed properly, to the benefit of the patient. And, it’s not just a program set up to deny care to patients, but is a system that assures proper utilization of services. In fact, the system directs people to more advanced care, at an early stage of an illness, which prevents patients from deteriorating. It’s a program that is available to patients 24 hours a day and 7 days a week.

So, how good is this program and are the nurses qualified to handle patients’ needs over the telephone? The answer is a resounding, yes! These nurses and trained and monitored to use a series of medical and nursing algorythms that direct them and the patient to a logical course of action that best serves the patient’s healthcare needs. If the patient needs to go to the emergency room, they are sent. If the patient requires only urgent care services, they are sent. If the patient is not showing any serious signs and symptoms of healthcare risks, they are directed to go to their physician, the next day.

To be honest, I was simply amazed at the capabilities of the computer program, which was designed by Emergency Room Physicians. These nurses, or an organization like them, would be of benefit, not only Medicare ESRD patients, but could also be invaluable to all patients within the Medicare system. Think about all the problems that patients are having with Medicare Part D (a large number of our patients are having problems with this program), these nursing professionals would be available to assist these patients.

What could such a program do for the Medicare system and its patients? We, just take a look at the following:

  1. Hundreds of millions, if not billions, of dollars could be saved in assuring that patients are being directed to the proper services, at the right time. This would prevent over utilization of services that are not required.

  2. 99% of a patients level of wellness depends on their knowledge of their particular illness and its treatment. It’s been proven time and time, again, that the more knowledge a patient has, the higher their levels of wellness. For you nurses out there, this is supposed to be what we are all about, helping patients reach a higher level of wellness. A national nurse call program for Medicare patients, particularly ESRD patients, would help accomplish that goal.

  3. 2003 was the first year that the National Institutes of Health actually could see a turn around in the numbers of patients coming onto the Medicare ESRD roles. No one knows exactly why, yet, but it has been surmized that earlier contact with patients, resulting in better control of blood pressure and diabetics taking Ace Inhibitor blood pressure medicaring (which reduce damage to their kidney function) may be why this has happened. A national nurse call program could greatly, no, I believe would greatly improve these positive outcomes. There is no doubt in my mind that Medicare patients having access to a 24/7 nurse call system would result in billions of dollars of savings in Medicare expenditures, while raising the levels of wellness for our seniors and all patients who rely on the Medicare ESRD system to maintain their very lives.

So, how do we fund this new nurse call program? We simply take the money that we are wasting on the ESRD renal networks and apply those funds to the nurse call program. The program could begin by help those patients who are in the most need, which are dialysis & transplant patients. Then, if the program is as successful as I believe it will be, we could expand the program to include all Medicare beneficiaries, resulting in even more savings for the Medicare system.

And, let’s not forget those who are enrolled in the Medicaid system. Before coming into dialysis, I worked in an intercity emergency room, which was literally abused by patients on Medicaid. Why did they abuse and overuse the system? Well, where else did they have to go and who could they turn to? A national nurse call system would benefit these patients, possibly as much as it would our patients.

How do we get this show on the road? Contact your federal Congressperson and Senator! Contact the President of the United States and tell them that you want action on this, immediately!

As for United Health Care, as a provider, I can’t really say that I’ve always been happy with their payment for dialysis. However, I can say that their United Health Group Division’s nurse call program is one of the best that I’ve ever seen. If it were not used, it should most certainly be a model for a national nurse call program for ESRD patients. My advice is that we don’t sit around wringing our hands, as we have over so many other important issues, but doing nothing. For providers, any program that keeps your patients healthier and out of the hospital means that you’re making money. Every chronic ESRD dialysis provider loses money with every hospital admission. As a result, you only stand to gain from the existence of a national ESRD nurse call program.

I look forward to any comments or complaints about this idea.

Respectfully,

Joe Atkins aka Dialysis Joe

General : Why ESRD Patients and Their Families Need to Push ESRD Telephone Triage System

From: Dialysis Joe (Original Message) Sent: 3/20/2006 10:36 AM
ESRD Patients & Families,

How many times have you wished that you had someone you could call about a dialysis or kidney related problem? In my estimation, a great majority of you. How comforting would it be to know that you could pick up a phone 24 hours a day and seven days a week and have a certified nephrology nurse at your disposal?

Well, it can happen and it should happen. Presently, fifty cents out of every treatment paid for, by Medicare, for your dialysis treatment (or your family member’s treatment) goes directly to a system of ESRD Networks that do absolutely nothing for you, the patients, or your loved one, the patient. Think about it, 330,000 patients, who dialyze three days per week, fifty two weeks a year. That’s a lot of money going to the ESRD Networks, so that a few people can live the lifestyles of the rich and famous. In the meantime, they cut services to the providers and the patients, every year.

Did you know that there was a time when every facility was required to have a patient rep, with an alternate, in every facility. These were reps chosen from the ranks of the patients receiving care in every facility. Now, that program has been disolved. That’s only the beginning.

The original purpose of the ESRD Networks was to assure that good care being giving administered by the providers. Now, it’s nothing more than a politically charged barnicle on the ass of Medicare. It’s time to retire this system and use that money for something that will really help those 330,000 ESRD patients, which is a Medicare ESRD Nephrology Nurse Telephone Traige System.

Don’t sit around and wait for something good to happen for your or your loved one. Pick up the phone or sit down and write a letter, or an e-mail to your Congressperson or Senator. As well, write a letter to George W. Bush at the Whitehouse and let these leaders know what you want and why.

You can reach your Congressman at:
http://www.house.gov/
You can reach your Senator at:
http://www.senate.gov/
You can reach President Bush at:

It’s time to act.

Sincerely,

Joe Atkins aka Dialysis Joe

Jane, Thanks for posting that. It seems to me a logical way to provide dialysis providers with more revenue to serve patients. My experience in dealing with our network was not positive. I called them for help in finding a home program years ago and they knew less about the availability of programs than I did.

Hi y’all,

Jane, where do you find these posts?

I find the idea of a national nurse call system for ESRD patients very interesting, but Joe has a few misconceptions in his thinking about the ESRD Networks.

First, while he’s correct that 50 cents from each treatment is collected to support the Networks, this money doesn’t all go to the Networks–some of it is kept by CMS (Medicare). I’m don’t know what ESRD Network budgets actually are (though, since most are 501©3’s, this is theoretically public information–non-profit 990 forms are supposed to be available upon request). Even if Joe was right in his calculations, $24 million divided among 17 Networks = about $1.7 million per Network. Most Networks have between 7-10 staff–they’re really quite small. And with this limited staff, they need to:
Ensure data collection from every patient at every dialysis center in their geographic region. These data are then forwarded to the United States Renal Data System (USRDS) to create an Annual Data Report. Without these data, we wouldn’t even know how many patients there are, what treatment modalities they use (and whether home dialysis is growing or shrinking–it’s growing, BTW), average numbers of hospital days, death rates, etc. This is vital information that we can’t live without.

Compare Clinical Performance Measures. Based on the KDOQI Clinical Practice Guidelines, the CPMs are a benchmark for quality care across the country. I’m personally dismayed that right now, the CPMs measure only aspects of the blood (blood pressure, anemia, dialysis “adequacy”, etc.), but am working to include the patient-centered measures of physical and mental functioning, too.

Conduct quality improvement projects. Fistula First, now a CMS “Breakthrough Initiative” that involves the entire renal community, began as an ESRD Network Quality Improvement project. Other projects Networks have done that help patients include clarifying when involuntary discharges from dialysis centers are appropriate (and when they are not), helping centers deal with challenging patients, and improving end-of-life care. I’m certain there are others; these are just top-of-mind.

Handle patient grievances. I can tell you that we’ve been contacted through Home Dialysis Central when folks have had trouble with things like insurance companies refusing to pay for home dialysis–and we go to the Network in that patient’s region for help! They’ve never failed to help us resolve these sorts of problems. When patients have grievances with dialysis centers, they can turn to the Networks for help.

In addition, the Networks are responsible for promoting vocational rehabilitation, patient education, and information about self-care and home dialysis modalities (some are definitely better at this than others). Some Networks hold regional patient education meetings. Some send out mailed newsletters and/or informational packets. Some have even hired vocational rehab coordinators to help patients get back to work. There are a variety of innovative projects that start with the Networks.

So, before we throw the baby out with the bathwater, it’s important that we all have a clear understanding of what the ESRD Networks can (and do) do for patients every day.

I don’t question what the networks “can” do. But I question what they “do” do. I’m sure there are somethings that get done and are good, but I think there is a lot more that “should” be done that isn’t getting done or being done poorly. We have never received literature from our network and wouldn’t even know they existed if we hadn’t been told by the center the grievance procedure. If they were responsible for the ESRD database for centers and the programs they offered there was more misinformation than information on that. I don’t know as I think a nurse 24/7 is a replacement for the networks but I do think the networks need revision or an alternative. Or they need to put out more information on their accomplishments so as a dialysis patient I would know they were looking out for us.

Hi y’all,

Marty wrote:

We have never received literature from our network and wouldn’t even know they existed if we hadn’t been told by the center the grievance procedure.

The one thing that I have to admit confounds me about the Networks is that, even though they all have the same contract, they interpret their duties very differently. So, only about half of them send out a patient newsletter, for example. It’s sort of a “state’s rights” approach–and I’m not a big fan of state’s rights. :wink: Anyway, that’s why it was possible for you to not know your Network was there: you must live in one of the Networks that doesn’t have a newsletter.

I’ve worked in the renal field for 16 years now, and it probably took about 8 for me to really understand (insofar as I do!) what the Networks can do, what they are supposed to do, what they actually do, and what I wish they’d do… It’s not at all surprising to me that folks don’t see what the Networks are doing–it tends to be at the aggregate level for all patients in a region rather than at the individual level that would be more apparent to many.

If they were responsible for the ESRD database for centers and the programs they offered there was more misinformation than information on that.

The data included in Dialysis Facility Compare are more a function of Medicare’s requirements than anything the Networks do. In fact, when we were looking at numbers of home dialysis patients, the data that the Networks had was a full year more current than what was in the USRDS report (which originally came from the Networks, but is delayed by the process of putting the report together).

The posts that began this thread came from Dialysis Joe’s website Dialysis and Transplantation.

I guess I have been in the 50% of Network regions that do not put out a newsletter despite having resided and dialyzed in several Network regions. My experience has been, in years of being on dialysis, I have never had a member of unit management inform me of the renal network and it’s patient services and I have never had anyone from the Network contact me to inform me that the Network exists and is there for me.

I have never had anyone from the Network contact me to inform me that the Network exists and is there for me.

It’s not very likely that with only 7-10 staff any Network could ever possibly reach out and contact individual patients to tell them they exist. If we evenly divided the 300,000 or so U.S. patients between the 18 Networks (they’re not, but just to do the math), each would have 16,666 patients. Even with 10 staff, that would be 1,666 patients each to contact–and most Network staff collect data and work on quality issues, not directly with patients.

But, if any Network folks are reading this board (and they might be!), it’s looking pretty clear that patients in Networks without newsletters are less likely to know that the Networks are out there working on their behalf. Patient newsletters are frustrating when folks move so often and postage keeps getting pricier. About half of the Networks did patient newsletters the last time we checked–it would be interesting to see if patients in those Networks are more satisfied…

Also, every Network has a Medical Review Board, and I believe these all have patient members. So, one way to help your Network become more responsive is to call and see if there is an open seat on the MRB (or if not, when the terms are up), and volunteer if you have time. It’s a great way to find out what’s happening, have a voice in Network services, and help out your fellow patients. Personally, I’d love to see more home dialysis advocate patients taking part in MRBs. :smiley:

Dori, It wouldn’t be difficult to let patients know they exist and their purpose.
They all have computers. All they would have to do is type up a form letter stating their existance, their objectives, their accomplishments send them to the centers in their region and have them passed out. If other Networks can send out newsletters why would it be so difficult for others. If your not involved with patients enough (that they know you exist), how can you expect patients to think you should be supported financially? If you took a survey of all dialysis patients and asked the question has the network helped you how many do you think would reply “yes”? I would have answered no because until you told us they were behind fistula first I had no idea.

Here is another area which I don’t think it the fault of the networks however the situation does exist regarding being patient advocates. If you should get involved with a lawyer one of the 1st questions he will ask is…What leverage do you have no leverage usually no win. The way I see it is the networks really don’t have much leverage at all over the centers. So even if a patients grievenace has merit the networks have no leverage over the center to help the patient. I personally would rather see the money spent on helping centers with start up costs for home hemo programs. Or supplying in home helpers for those who are denied home hemo for lack of a partner. Or even useing it to help patients by meds with they can’t afford. The nurse program isn’t even a bad idea. All of these would directly benefit the patients in away that wasn’t so abstract.

Dori couldn’t the main network function - data collection - be done through elctronic submission? My understanding is that providers currently print out data - submit it in paper form to the networks who then use hired staff to enter the data. So it goes from electronic to paper to electronic. That doesn’t strike me as an efficient system.

Data collection is only one function of ESRD Networks and data collection is done electronically now. People still have to make sure that the data reported is validated and that clinics get reports back regarding how they compare to other clinics nationally and in their Network. Also, once data is available, someone has to look at it and develop the plans to improve outcomes.

I’ve called upon two different Networks to help patients get coverage from HMOs for home training. One Network forced a dialysis clinic to re-start an evening shift because one patient needed that shift to be able to work. One Network developed a plan with clinics to help more patients keep their jobs through increasing evening shift availability. One Network hired a vocational rehabilitation counselor who works with patients and professionals. I know several networks that have prevented clinics from discharging patients unjustifiably. Are there things that Networks could be doing that they’re not doing…sure. Isn’t that what continuous quality improvement is all about?

Networks can have an tremendous positive impact on the system of care and their efforts can greatly benefit patients. As in any other setting, each Network is made up of individuals and humans being humans, some are more effective than others. If the patient services coordinators in the networks take their responsibilities seriously and have the support of the executive director, the Network executive committee and the medical review board, they and their Network will be more effective than the Network patient services coodinator who has little support for advocacy, is not as knowledgeable or lacks self-confidence.

If you want to read about Networks and their functions, visit
http://www.cms.hhs.gov/ESRDNetworkOrganizations/01_Overview.asp and follow the links.

Beth I’m glad to hear they’ve gone electronic and are doing good things under the rules in effect.

I think the Dialysis Facility Reports http://www.sph.umich.edu/kecc/usr/samplereport.pdf should be released over the internet and available to the public. Take a look at the sample report to get an idea of the information that is reported but not released.

I was on the workgroup that developed these forms. The workgroup was made up of some great minds. One of the best was Dr. Bob Wolfe who is an epidemiologist from the University of Michigan. We also had representatives from CMS, CDC, ESRD Networks, providers, etc.

The reports were developed primarily to help surveyors know more about the clinics they were getting ready to survey and to help them target clinics for survey more effectively. A side benefit was that it allows clinics to see how they compare with clinics in their state and nationally and allows them an opportunity to correct data reporting errors before the reports were transmitted to survey agencies.

So far as public reporting, that’s what Dialysis Facility Compare is for. The discussions about what should be reported in DFC were going on at the same time and in the same location as our workgroup discussions. I know that folks on that workgroup wanted many more data elements reported. Most of the limitations were because no one in the federal government collected certain data.

As I recall with the facility specific reports, multiple databases were used to prepare these data reports. Some of the data was available publicly. Other data were available under the Freedom of Information Act (FOIA) if someone requested it. Still other data came from sources that were not “FOIA-able” because of promises made when data was collected.

I’m not sure what it will take to get more data to be publicly reported, but it seems like the system is headed more that way, especially with pay-for-performance.

General : The Renal Networks are Failing Providers and Patients

Hi Dialysis Joe,

I’ve been dormant here for a while, but your post and your name caught my eye. Because I too am a Joe on dialysis I thought maybe the few people who know me in the ESRD community might think I came up with a new handle. In my case the handle is Joe Z. It was that before and now during dialysis.

If I’m reading you correctly you’re saying the ESRD Network program “is a dismal failure.” Sounds like a huge unfair generality if you are including the Florida ESRD Network in that unfortunate statement. You’ve made several other less than classy judgemental slurs about the Network which frankly bother me.

I find the ESRD Network in Florida a very trustworthy group dedicated to our cause. They’ve educated and impressed me tremendously. That’s not because I haven’t yet dealt directly with any other of our larger patient advocate groups. And at age 62 after 38 years in corporate America I certainly wasn’t born yesterday about the art of communication, support, “customer service” and ESRD patient advocacy.

Forgive me for not reading your entire diatribe. It took only the first two paragraphs to realize you had a rather large burr in your saddle about the ESRD Network. That’s fine and you’re certainly entitled, but why speak in generalities and slurs that you are applying to the entire ESRD Network?

Frankly I don’t care if you or anyone else has a problem with their individual ESRD Network outside Florida. Address it with your particular Network group. But your attempt to take away mine is not only unjustifed but uncalled for.
Sincerely,
Joe Z
aka Joe Zarinsky, just your average Joe

Marty writes:

My experience in dealing with our network was not positive. I called them for help in finding a home program years ago and they knew less about the availability of programs than I did.

Should never be the case that network knows less about modalty availability than patients.

Dorit writes:

I’m personally dismayed that right now, the CPMs measure only aspects of the blood (blood pressure, anemia, dialysis “adequacy”, etc.), but am working to include the patient-centered measures of physical and mental functioning, too.

Yes, patients can have perfect labs and still feel lousy. There is a lot more to feeling healthy and whole that must be looked at. Patients must be educated on the side effects of kidney disease and dialysis, apprised of the superior modalities and counseled on every possible step they can take to maintain as much balance as is feasible.

Dori writes:

Other projects Networks have done that help patients include clarifying when involuntary discharges from dialysis centers are appropriate (and when they are not), helping centers deal with challenging patients, and improving end-of-life care. I’m certain there are others; these are just top-of-mind.

How are the above Network initiatives communicated to the units? (i.e meetings, written communiques etc)? Are patients privy to such information or other educational initiatitves that concern them?

Dori writes:

When patients have grievances with dialysis centers, they can turn to the Networks for help.

Many, many patients have posted on the net that they did not feel that the Network handled their grievances effectively. This seems to be a weak point. Also, an advocacy group posted dozens of state surveys from many states involving all the major corporations and private and/or non-profits as well, which showed gross neglect in units, nationally. And problems can go on a long time in the case where patients are not informed that there is a Network grievance system.

Who supervises the Network to ensure that it mediates effectively for patients? What is the extent of their grievance duties, as in talking with Brady Augustine formerly of CMS, an advocacy group learned that the Network was never set up to handle grievances- this is the function of the individual state depts. of hospitals. Because wouldn’t it be a confilict of interest if the Network, which is boarded by corporate providers whom patients with grievances are at odds with, handles grievances?

In addition, the Networks are responsible for promoting vocational rehabilitation, patient education, and information about self-care and home dialysis modalities (some are definitely better at this than others). Some Networks hold regional patient education meetings. Some send out mailed newsletters and/or informational packets. Some have even hired vocational rehab coordinators to help patients get back to work. There are a variety of innovative projects that start with the Networks.

Personally speaking, I have never enountered any of the above services from the networks I have been under. So again, I would ask, who is supervising the networks’ performance? Are a percentage of the networks not doing their jobs?

Marty writes:
Quote:

We have never received literature from our network and wouldn’t even know they existed if we hadn’t been told by the center the grievance procedure.

Dori writes:

The one thing that I have to admit confounds me about the Networks is that, even though they all have the same contract, they interpret their duties very differently. So, only about half of them send out a patient newsletter, for example. It’s sort of a “state’s rights” approach–and I’m not a big fan of state’s rights. Anyway, that’s why it was possible for you to not know your Network was there: you must live in one of the Networks that doesn’t have a newsletter

This should not be, newsletter or not.

Dori writes:

I’ve worked in the renal field for 16 years now, and it probably took about 8 for me to really understand (insofar as I do!) what the Networks can do, what they are supposed to do, what they actually do, and what I wish they’d do… It’s not at all surprising to me that folks don’t see what the Networks are doing–it tends to be at the aggregate level for all patients in a region rather than at the individual level that would be more apparent to many.

Again, if what networks do is at an aggregate level rather than an individual level, this does not excuse the lack of information/services patients receive.

Marty writes:

If they were responsible for the ESRD database for centers and the programs they offered there was more misinformation than information on that.

Dori writes:

The data included in Dialysis Facility Compare are more a function of Medicare’s requirements than anything the Networks do. In fact, when we were looking at numbers of home dialysis patients, the data that the Networks had was a full year more current than what was in the USRDS report (which originally came from the Networks, but is delayed by the process of putting the report together).

What is wrong with the system? Patient plans are months behind schedule, too. I personally have been given plans to sign that were 6 months old! Are there not enough people to do the job or shabby work effort?

Jane writes:

I have never had anyone from the Network contact me to inform me that the Network exists and is there for me.

Dori writes:

It’s not very likely that with only 7-10 staff any Network could ever possibly reach out and contact individual patients to tell them they exist. If we evenly divided the 300,000 or so U.S. patients between the 18 Networks (they’re not, but just to do the math), each would have 16,666 patients. Even with 10 staff, that would be 1,666 patients each to contact–and most Network staff collect data and work on quality issues, not directly with patients.

Is this another flaw of the system? Surely there is a way to inform every patient of the existence of and services of the ESRD Network. How about a mandatory large poster in every unit waiting room? Or, the units give out copies of info. they want patients to have- what’s stopping them from giving out info. on the Network?

Dori writes:

But, if any Network folks are reading this board (and they might be!), it’s looking pretty clear that patients in Networks without newsletters are less likely to know that the Networks are out there working on their behalf. Patient newsletters are frustrating when folks move so often and postage keeps getting pricier. About half of the Networks did patient newsletters the last time we checked–it would be interesting to see if patients in those Networks are more satisfied…

Again, units can give out network newsletters in their waiting rooms or directly to each patient. Speaking of satisfaction, I personally have never received a patient satisfaction survey from any of the networks I have been under.

Marty writes:

Posted: Wed Mar 22, 2006 7:29 am Post subject: Worth the time


Dori, It wouldn’t be difficult to let patients know they exist and their purpose.
They all have computers. All they would have to do is type up a form letter stating their existance, their objectives, their accomplishments send them to the centers in their region and have them passed out. If other Networks can send out newsletters why would it be so difficult for others. If your not involved with patients enough (that they know you exist), how can you expect patients to think you should be supported financially? If you took a survey of all dialysis patients and asked the question has the network helped you how many do you think would reply “yes”? I would have answered no because until you told us they were behind fistula first I had no idea.

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Marty
Guest

Posted: Wed Mar 22, 2006 7:53 am Post subject: Useful


Here is another area which I don’t think it the fault of the networks however the situation does exist regarding being patient advocates. If you should get involved with a lawyer one of the 1st questions he will ask is…What leverage do you have no leverage usually no win. The way I see it is the networks really don’t have much leverage at all over the centers. So even if a patients grievenace has merit the networks have no leverage over the center to help the patient. I personally would rather see the money spent on helping centers with start up costs for home hemo programs. Or supplying in home helpers for those who are denied home hemo for lack of a partner. Or even useing it to help patients by meds with they can’t afford. The nurse program isn’t even a bad idea. All of these would directly benefit the patients in away that wasn’t so abstract.

Agree wholeheartedly with all your points, Marty.

Beth writes:

One Network forced a dialysis clinic to re-start an evening shift because one patient needed that shift to be able to work.

This is interesting- the Network can force a unit to open up an evening shift in order to make it possible for a patient to be able to have employment? I’ve never heard this before.

Beth writes:

One Network developed a plan with clinics to help more patients keep their jobs through increasing evening shift availability. One Network hired a vocational rehabilitation counselor who works with patients and professionals. I know several networks that have prevented clinics from discharging patients unjustifiably.

Again, I’ve never heard of this before, but that’s great that a network developed a plan with clinics to increase evening shift availability. Do you know how this came about? And a rehabilitation counselor–again, never heard of this, but this too is great. And several networks have prevented clincs from discharging patients unjustifiably?-- well this is really, really great, because in every unit I have been in most patients have little concept of the Network and the grievance system and there are reports all over the net of networks that do not go to bat for patients with patients getting “dumped” from their units with no place to dialyze but hospital emergency rooms.

Beth writes:

Are there things that Networks could be doing that they’re not doing…sure. Isn’t that what continuous quality improvement is all about?

The question is, who supervises the Network and how would patients and others they serve know if they are doing their job?

Beth writes:

Networks can have an tremendous positive impact on the system of care and their efforts can greatly benefit patients. As in any other setting, each Network is made up of individuals and humans being humans, some are more effective than others. If the patient services coordinators in the networks take their responsibilities seriously and have the support of the executive director, the Network executive committee and the medical review board, they and their Network will be more effective than the Network patient services coodinator who has little support for advocacy, is not as knowledgeable or lacks self-confidence

Again, you are saying that if the system operates as it is designed to operate it should be very effective. So then, I am wondering, where are the checks and balances to ensure that this is so, especially since so many patients are unaware of the existence of the Network and have never had any communication from same?

I’m sure the annual report tells you this, but Network oversight is through CMS. There is a general statement of work that is like a contract that the Network must live up to. Each Network has some leeway in how it fulfills the statement of work. Each Network is assigned a CMS staff person who is the Network’s project officer. This person surveys the Network activities to be sure that it’s doing what it’s supposed to be doing and meeting any set deadlines.

If you want to read about what your Network has done, including means of communicating to patients, click on your state on the map at www.esrdnetworks.org and look for the Network’s annual report. You can read a summary of what all Networks did in 2003 – the most recent annual report that is published online at
http://www.cms.hhs.gov/ESRDNetworkOrganizations/Downloads/NetworkAnnualReport2003.pdf

See report page 38 for how Networks communicate with patients including using patient representatives…Does your clinic have one and, if so, is he/she passing along information? Patients that are not on Medicare are unknown to ESRD Networks who learn about patients to communicate with them through the 2728 form that alerts Medicare and Social Security that a new patient has started dialysis. if a patient has an employer group health plan, it’s possible that the clinic doesn’t send in this form until the person wants to apply for Medicare.

Ask your dialysis clinic how patients in your clinic hear about the Network or call your Network. One way is that since 2000 ESRD Networks have been distributing the CMS new patient packet in the first months after someone starts dialysis/ This requires that the Network know about the patient. The packet is mailed to the patient’s home. This packet has information about how to contact the ESRD Network for questions or concerns.