Calling Epoman ,Bill Peckham , Marty ,anyone who cares

Hi guys

I think it time we on home hemo talk now and see what if any thing comes from starting a PAC for home consumers. I’ve been on this site since around 12/05 or1/06. If you guys don’t want or think that time has come to see what all is in the PAC idea. Then so be we will just have to do what each single consumer on his or her own can do. We that can may need to form a group like ACT UP to get the message out.

I read some very sad stuff on this web site that is set up for professionals.( see patient compliance in the prof. sec) The same people who are giving advice to consumers are also giving it to prof. Seems like a conflict of who helps who. I will get back to "LIZ, Dori and Beth on the pro site and give you a consumer point of view on compliance. If they don’t kick me off for standing up .
bobeleanor :roll:

You go! I will stand up with you. Just let me know what you need…
LSB

Hey LSB

We need input , Bill travels in the loop so he might be of a great help. I think the most important thing we need is grassroot support form the people who are trapped . I know that some on this page are very happy with the set up they have and some are scare to death of the thought having the plug pulled. But after reading the stuff on hd for prof. And after reading the things on this page , I don’t have anything to lose. I can no longer deal with the company I’m with , and unlike what Beth and Dori say, I just can’t hop into my car and drive 5 or 10 miles in any direction to find another dialysis center that offers home hemo, and why, two companies have control of dialysis. Beth said just do a seach. I did this page only has certain clinics. And even the clinics you find if the name says Joe’s dialysis if you look hard you will see that Joe’s was bought out by one of the two companies. Or your find that the centers do not offer home dialysis outside of PD. It would be much easy to go to a center where the staff treated you with respect and you went see YOUR dr. once a month . I will get as much information as I can Thanks LSB
Bobeleanor :idea:

Bobeleanor wrote:

I read some very sad stuff on this web site that is set up for professionals.( see patient compliance in the prof. sec) The same people who are giving advice to consumers are also giving it to prof. Seems like a conflict of who helps who. I will get back to "LIZ, Dori and Beth on the pro site and give you a consumer point of view on compliance. If they don’t kick me off for standing up .

I assume you’re referring to the thread titled “compliance” on the HD for professionals message board that was started by Liz who appears to be a staff member.
http://www.homedialysis.org/boards/viewtopic.php?t=402

If you read Dori’s post there, you would see that she promoted self-management and patient partnership in care. This is fully consistent with what she posts on patient message boards too.

Unfortunately, many people in healthcare use the term “compliance” or the term “adherence.” Dori and I do not use either of these terms unless we’re restating what someone else has said. These terms presume that professionals know everything, patients are blank slates without experience knowing nothing, and if patients just followed what professionals told them to do passively and questioningly, patients would do much better.

Dori and I have given many talks in which we recommend that professionals provide early and ongoing education to patients and encourage staff to welcome questions and help patients become equal partners in care. We believe that people with chronic illnesses do better and live longer when they seek answers to their questions, participate with the team to develop goals, and participate actively in their care with home dialysis being the ultimate in participation in care. We also believe that if there are barriers to goals that the team and patient have jointly set, staff and patients need to work together to overcome them. The federal regulations that govern dialysis clinics require patient participation in care planning which means more than signing a form. New regulations are being written now and are supposed to be more patient-centered than the ones that have been in effect since 1976.

If you’re unhappy with your care and choices of clinics in your area, have you looked on the government’s Dialysis Facility Compare – http://www.medicare.gov/dialysis/home.asp – website to see if there are other clinics within an acceptable driving distance from your home? If you want my help either email , post the closest town and I’ll try to see what I can find. Or you can compare the DFC list to our list of clinics that offer home dialysis.

There are two major dialysis corporations in the US and a few smaller corporations. This leaves a significant number of clinics that are not owned by any of those corporations but are privately owned by physicians or others. Dialysis Facility Compare tells whether clinics are for-profit or non-profit. The two large dialysis corporations are both for-profit. You might want to check out non-profit clinics. Although the large corporations do buy other for-profit clinics. However, if DFC says a clinic is non-profit, it probably still is.

Another option is to move to get the type of dialysis care you want. I knew a patient who was really unhappy at her FL clinic. She and her husband moved to Seattle to get the type of home dialysis she wanted. I don’t know if moving is a possibility, but if it is, you might have good luck that way.

All though all the suggestions you make sound good, I think efforts should be made to change the clinic attitudes so patients aren’t forced into moving and searching for new clinics all the time. It would be much easier if there were some kind of compliance on the side of centers.
I know our local Davita insists on 2 clinic visits a month for home patients.
1 weeks see dietitian and SW next week see nephrologist. This can be done in 1 visit. It may not be as convenient for the center but do they ever consider the burden it places on the patient. Is the answer well if you can’t make 2 visits a month find some place else. Someone sometime has got to see it from the patients point of view. Patients do have lives and they just can’t cater to the wims of the clinics all the time. Doesn’t anybody get this. By the way I thought Dori’s reply toward patient compliance was excellent. Seems to me like she gets it.
Because the corporations are so big and hard to budge it seems like people keep trying to get the patients to make the changes. It shouldn’t be the total responsibility of the patients. The centers should look at what is making the patients so uncompliant, unhappy etc. and see if there couldn’t be some changes made in their attitude and there way of doing things. Our center looks at it from both the patient view and their view and they look at patients as individuals with individual circumstances and needs and this is what works. They wouldn’t ask someone to drive a long distance twice a month just because it was more convenient for them.

Two clinic visits a month does seem excessive, Marty. Even if you did live very close by (and many don’t), the time spent waiting to see the folks you have appointments with would really add up. I’m sorry to hear this and hope that policy will change.

One thing that may be going on with the DaVita clinic is that at the first clinic the nurse may draw blood so it can be sent to the lab and the results can be back by the time of the doctor’s visit. I think I’ve mentioned this in another thread, but it’s possible that blood could be drawn at a nearby lab or doctor’s office and the results sent to the nephrologist and/or dialysis clinic. I’ve known patients that did that with dialysis providers when they lived a distance from the dialysis clinic.

It doesn’t seem like an unreasonable request to get the clinic visit on one day. Perhaps patients could talk with the social worker and dietitian by phone once a month and if they’re at the clinic on the day the patient meets with the doctor, the patient could talk with them again then.

If these suggestions don’t work, DaVita has a grievance policy as do all dialysis clinics and corporations. Patients should use that to share their concerns. One thing that I do know is that DaVita likes patients with employer group health plans. Having to come to clinic twice a month means taking more time off work and could jeopardize the patient’s or employee/caregiver’s job which could jeopardize their health insurance. If this point were made, perhaps clinics would look at alternate ways schedule clinic appointments.

Although most clinics train patients weekdays, I’ve heard of clinics that train patients in the evening and on weekends so patients don’t have to miss as much work. This is not the norm, but again, if dialysis clinics figure out that they’re losing patients (and the revenue from their health insurance) because of rigid attitudes, attitudes may change.

Hi Folks
The reason this set me off is the thinking that is out there about consumers. I’m sorry to Dori and Beth.

Dori it is not just Marty it is anybody on a home program. I’m trying to get it where I just see my doctor. I understand fully the risk and my nurse and the company know that at 2am on a Saturday when the center is closed I’m (and for that matter at any time if I need 911) I’m going to where my doctor works which is 20 miles away compared to the center which is 50 miles. Which makes sense?

Lets stop joking folks, the grievance policy with Corporate America is like you (Beth and Dori) have said before about the esrd. That they get so many consumers calling or emailing that the grievance policy is in one trash can and out another. Lets face it, most pt are pts, not consumers. We need the #'s to show Corporate America that the policy must change. As we talk I’m putting together a letter that will go to my state dept of health, esrd, my elected folks in the state and in Washington, and every news outlet. If I can just get one of these folks or someone in this group who wants to run the story. I cannot run from center to center or call every center only to find that they do not do home programs outside of PD.

These companies are like a sow and the doctors are piglets suckling from the teats of the sow.

thank you all for being out there, right now in my life we are going through some very hard times, which brought to light the insanity of the bottom line of Corporate America. I have been a good pt/consumer all my life and this is the first time Corporate America’s bottom line made no sense what so ever.

bobeleanor :smiley:

I read in Nephrology News and Issues and articles suggesting CMS take a home first initiative just as they did fistula first. Maybe if that gets started attitudes will change as more centers will care about getting patients into home programs and they will have to be a little more accommodating to do so. Things they can do are train at night. Only have 1 clinic visit a month. Have blood work done at home and sent to labs. Permit IV iron done at home. Computer monitoring instead of patients writing up treatment sheets and sending them in. Allow flexibility in treatments.
I wouldn’t suggest the above be a standard set of rules but I would suggest these be options for all home programs.

I checked with a friend of mine who works in a DaVita clinic. There is no corporate policy that requires home patients to come in twice a month. He said that people do come in to get blood drawn once in the month and return later to see the doctor and the rest of the team. If a patient lives too far to come in for blood draws, the patient can have blood drawn at a more convenient location and have the results sent to the clinic so the patient needs to only come once a month.

These are the things we’ve suggested:
– Explain the problem that you have with coming twice a month to clinic appointments to the clinic’s clinical manager and ask about other options;
– File a grievance using the facility grievance process including with the state and/or ESRD network;
– Change to a different clinic within the corporation or one that is unaffiliated with that corporation and/or is non-profit.
You might also want to talk with your nephrologist to see if he/she has other ideas that we haven’t mentioned.

I understand that you’re frustrated, but what have you tried so far to deal with the problems you’ve complained about? How did that work for you? Without knowing what you’ve done, it’s hard for anyone to know what else to recommend.

I can’t imagine why you couldn’t draw blood at home yourself and send it in before your clinic visit, in time that the results are there when you see your care team. It should not be necessary to have it drawn by a lab unless it needs special treatment (ice…) after it is drawn.

If CMS does go with home first, I’d like to see the programs modeled after the Northwest Kidney Centers and the Rubin Centers. I think Bill Peckman is happy and I sure know I am.

I don’t know about that but my clinic doesn’t accept lab work just like that…in other words I can’t just go in anytime and drop of lab work…I need to let them know ahead of time and exactly what day! Somehow, they need to prepare some recording and labels…something like a reserved slot for the analaysis to be done at the labratory…the blood work is only good for 24 hours…

Like Dori said, I can’t imagine why a home patient couldn’t draw blood during their home HD treatment (if taught how and when to draw) and why they couldn’t be given labels to put on the tubes and mailers to use to overnight blood to a lab. Even if there’s a specific test that needs to be kept cold, there has to be a way with the cold packs that people use for keeping drinks and food cold. In my old clinic, staff regularly mailed blood to a lab that tested it and we got the results back by fax (it probably comes back by computer nowadays).

Maybe the patient organizations would be an ally to help encourage clinics to look into this as a way to help patients devote less time to dialysis and more time to living the rest of their lives.

Hi all, like Marty said Rubin is the best. We are given all the blood tubes,
date to draw both pre and post, the centrafuse (sp) to spin and told to put everything in refrigerator. I put 2 ice packs in the freezer and then in the morning pack it up and either Ralph delivers to Fed X or they pick up at the house. We do this 2 times a month. The first one is done at the beggining of the month and the mid month so at clinic they have all the info. system works great.
Pat

We draw our own bloods now and put them in the refrigerator then when we pack them for sending to the lab the next day there is an ice pack in our packaging kit to put with the bloods. It was my understanding the local Davita center also did blood draws this way.
I think the reason our local Davita Clinic has the twice a month deal is to give iron during one of those visits. But it is good to know there is no corporate policy requiring twice a month if you don’t need iron.
I was very pleased with the staff at our local Davita. I think the program itself is good because you have an option of machines, and the time you want to run and the Nurse has gone well beyond the norm to introduce me to their home program.
To be honest I haven’t put any effort into working with them. As long as in-center iron treatments are corporate policy that just doesn’t work for me and I have solved the problem by making the decision to stay where I am.
I respond to these posts the way I do; to bring awareness to some of the patient issues because as a dialysis partner I am aware of them. Giving the suggestion that someone change centers or move as a way to resolve the problems is false. What it really does is avoid the problems and the problems are left in place for the next home patient to face; it doesn’t do anything towards making home programs more patient friendly.

bobeleanor, I think the time has come to start something in regards to home patients. I think it is wonderful more clinics have home programs. I think it is great the patients outcomes are so good. Now that the door is open, I think we have reached a time where we do need to bring awareness to make the programs more “user friendly” . NxStage built its machine on this concept and look how that has boomed. Can’t help but believe more “user friendly” home program wouldn’t have the same boom.

My 'crit crashed these last few weeks. I’ve wanted to participate in your recent posts Bob, I have been lurking but during dialysis - when I usually post - I just felt like vegging and at work - the other time I post - I’ve been way too busy to surf (during breaks and off the clock).

I will say that I think the Renal Support Network offers a structure and base that we home dialyzors could plug into. There are also existing PACs - Kidney Care Partners has one (think HR 1298) and there is the group NxStage, Aksys and Renal Solutions formed (think HR 5321. Help me with the name guest).

It has been my experience that there are many opportunities to promote other people’s agenda and by plugging in and helping existing efforts you earn the street cred to participate earlier and earlier in the process.

I’ve proposed a Dialyzor’s Union previously and I think it could work and be useful but one barrier is the ebb and flow of our energy.

I’m reminded of the old story of the three ways to get to the top of a tall tree (usually the tree is a metaphor for a large business but in this case the tree is renal industry influence). You can sit on a sapling, climb an existing big tree or you can make friends with a big bird. Unlike in business we are free to do all three.

By the way instead of compliance I prefer the term accommodate. Dialyzors must accommodate CKD5 through diet, exercise and dialysis.

As far as a strategy to address the issues you all have pointed out, thinking so that it has an impact sooner rather than later, what about a more robust Method II system. This would bring competition and dialyzor choice to every part of the country.

Hi Folks

Hello Beth and Dori

How long have you two been trying to get changes in the sytems and I’m sure you two are not alone. It sounds from I’ve read on this site that Bill has been very up front on Pt consumers rights.

This is from the esrd: In regards to there being a law in writing, there is no law that I can give you. The issue is with the dialysis corporate policy, facility policy and nephrologist in regards to how you are followed on a monthly basis. There are Standards of Care that all facilities are to follow. Is there a DaVita unit closer to your home that has a home hemo program? You may have to change nephrologists and facility as your back-up unit to allow for this to happen.
David Moskovitz
Quality Improvement Coordinator
ESRD Network 4, Inc.

THE PROBLEM ONCE MORE WHERE ARE ALL THE CENTERS THAT OFFER HOME PROGRAMS OUTSIDE OF PD

This person who you know Beth that works for Davita works in land of OZ, Here in great state of Pa davita works somewhat different. No many how good a pt/consumer you might have been one slip and your out. I’m not going to get into details at this time. The problem wasn’t on me it was in davita bottom line. It had nothing to do with payor insurance.

What needs to change is way home pt/consumers are looked at. Just the fact we want to do home should tell davita or anybody we care about our health. Like I said I just want to see my doctor if it once a month so be it ,but this going to hear the same lab report (THE SAME LAB REPORT) by three people looks like insurance fraud and medicare fraud
BOBELEANOR :smiley: THANKS FOR A GREAT PAGE

Hey Bill

I did even read your post when I sent my reply to Beth.

Here is my Email if you want send to any and all information on needs to be done or might be done. bobeleanor3@excite.com Or just post them on this page.

The people who on home need the rules to change, just like the center people do but first thing first. I see and hope that I will be getting some time down the road where I could go to DC I’m only up here in phila.
bobeleanor :smiley:

Ps. I too draw my own labs two times a month and ship fedex