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Roberta Mikles BA RN


Why does it not surprise me that providers continue to NOT listen to patients and why does it continue to not surprise me of the numbers of patient-organizations that are tied to the industry --

I have stated, for well over seven years, as did my late father, who suffered emotionally and often physically due to incorrect practices and retaliation --- "FMC, DaVita and others -- IS THIS THE CARE YOU WOULD WANT YOUR LOVED ONE, OR YOURSELF TO RECEIVE. Having worked with patients, for years, I support their returning to work. I have known of facilities that have not rescheduled/rearranged a treatment in order for a patient to have a job interview --however, on the other hand, I have seen staff go out of their way to accommodate a patient --- someone who they all liked ---personable, charming, etc. as I called him, a smooth talker. Not only does CMS NOT target increased employment but they do not do their job effectively and have not for years -- no effective consequences for facilities that have preventable incidents resulting in harm, etc.. Obvious, to me, that when the new Conditions were complete that there was more influence from providers than listening to what patients had to say... in fact, have we seen any significant change in the types of cited deficiencies? I think NOT! - This speaks for itself.

I do not believe that those working, for the most part, in dialysis, are cognizant of the real issues that patients face or are even semi-cognizant that these patients might have been employed and can be employed again - as many want to. IF ONE GETS INJURED AT WORK THEY RECEIVE WORKER'S COMPENSATION AND ARE OFTEN RETRAINED... WHY DOES THIS THINKING NOT ALSO APPLY TO DIALYSIS PATIENTS.?

The intertwined environment sends a loud message to those who speak up to ensure their patients are receiving safe care with increased quality in their lives -- you do NOT buck the existing system and if you do, well, as one nurse told me - she met with retaliation that made her leave her job.,

This quote "...
""""Today, no such system exists in the U.S. and, worst of all, no organization recognizes this or is trying to do anything about it.""""
Well, we have been attempting to address this but as everyone knows CMS only listens to the LDOs... and in attempting to discuss care with other groups, well,, due to the marriage of patient advocacy groups, along with many receiving support, funds, grants, from providers, hmmm --- what can one expect -- these groups, although having their positive points and do good, are still TIED AT THE HIP and must walk a fine line when it comes to addressing incenter care and all aspects of such.
In Fact, if more patients were encouraged to do home dialysis, perhaps their chances of re=employment would be greater.
As I recently read the 10 things all patients should know, by the NKF, I had to laugh -- nothing was clearly stated about patients being given information on the CORRECT practices that staff should be implementing. Why can't each patient receive, for instance, a copy of the facility's infection prevention policy -- this way the patient, or their loved one, can read and then if an incorrect practice is observed, the patient/loved one can remind staff to implement correct practice --- I state this because it is evident that nothing has changed as evidence in the facility surveys www.qualitysafepatientcare.com - Further the NKF stated that CMS website provides information in selecting a facility -- give me a break, ,, this information they provide is useless, perhaps being able to see the last faciliity survey would be more helpful. Now that we have ProPublica to thank for releasing CMS' protected data www.propublica.org/dialysis patients WILL have more informaton on facilities and which one to choose

Rich Berkowitz

Home Dialyzors United supports the plan to impact change in dialysis by first targeting re/habilitation and employment. In fact we are a co-author of the plan recently presented to members of Congress. In meetings over the last month, we are encouraged our ideas are resonating on both sides of the political aisle. There will undoubtedly be groups in the renal community that will oppose this approach, but I am more convinced it's the fresh approach needed that makes both political and economical sense.

It's not enough to say we should strive for better dialysis, and longer and more frequent dialysis. Many already know that makes economic sense because it saves much money even if by just tremendous savings on hospitalization. It would also save a great many lives, but just as other initiatives have failed, it initially requires money to save money and that doesn't fly in this gridlocked DC.

Change within CMS is going so slowly, if at all, it would be decades before seeing any improvement. We can't wait that long, and Medicare could even be gone. We must act now, and be smart about it. By propping up those who can be employed, we prop up everybody. It will allow home dialysis to grow and centers open after 5:00pm. That helps everybody.

The LDO's should jump at the chance to show they are being sensitive to patients at their centers instead of finding more ways to cut costs. This commonsense approach even potentially puts more money in their pockets by extend the MSP for as long as they help keep a person employed. Isn't that what the original intent of the Medicare entitlement was all about?

Roberta Mikles BA RN

Rich, I agree with re=habilitation of patients, however, Unfortuntately NOT everyone, in my opinion will benefit from the centers opening after 5 p or rehab programs to return to work - a return-to-work program is needed, for sure -- however,let us not forgoet those patients who are not able to work and will, for whatever reason, have to stay incenter -- WHO WILL PROTECT THESE PATIENTS? With the continued preventable errors -potential and actual - lives are at stake. There is too much 'closeness' of patient advocacy groups who are connected to the industry, In spite of some being very good at what they do, offering much to the patient, when they are connected to the industry (LDO, pharmaceutical company, etc) then one must walk a very fine line otherwise the loss of funding, grants, etc could be a reality for these organizations. THIS IS THE SAD TRUTH

Roberta Mikles BA RN

Afterthought -- in order to start to focus on rehab and employment, providers must ensure that the highest quality of care is given that can result in improved health/quality of life in order to return to work

Roberta Mikles www.qualitysafepatientcare.com


We should not be surprised at the horrendous chaotic system we call dialysis. In any formal activity the government participates in the bureaucratic side rules. Dialysis Providers, for the large part are in business to improve the bottom line. Fresenius for example is an incredibly large overseas corporation, which branched into the United States. Any item used in dialysis is made by Fresenius, many of the drugs used in dialysis are owned by Fresenius. Fresnius is the second largest contributor to lobbyists in Washington D.C. The largest provider of dialysis in the world is fresenius. Their dialysis clinics are not adequately staff, though somehow it meets medicare guidelines. The chaotic, frantic race to keep up with corporate bad decisions and paperwork places concern for the wellbeing of these captive individuals on the backburner. This is Corporate America meets Greedy Insurance Con Man while having an affair with Egocentric Physician, resulting in Dialysis System.

Joe Wear

There desperately needs to be a more holistic view of how ESRD patients receive care in general. Far too often the nephrologists and dialysis units focus on our labs, which is very important, but there are very few support mechanisms to keep folks who are working, working, and help those who want to work get the training and support they need to enter the work force. I was fortunate in that when I was on dialysis the first time I could navigate my state's voc rehab system on my own. I was even more fortunate when I had to go back on dialysis after my transplant failed to have an employer who has been nothing but supportive of me. I have seen many folks over the years who want to keep working and can but have employers who, imho, break the law and force them out the door. In those cases it would be great if the dialysis providers, as the medical personnel who have the most contact with a patient would do more to help people keep the jobs they have.

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