Vcarmody I am so glad that it worked out for your husband. I know that we all rant about the system being broken, and well, it is... BUT there is an even bigger problem out there, lack of communication. Almost ALL dialysis units in the United States have to abide by the Medicare Conditions of Coverage (CfC's)* (link below) and, the problem is, people don't know about this. Sadly, the majority of people on dialysis are NOT on the web and they are the ones who need the information the most.
I have written a lot about advocacy, I was put in a position where I was all alone on dialysis, and I had to fight for what was my right. After I won that battle, I realized that I had a responsibility to tell everyone that I came into contact with that there are options and there is an over-site system in place (the Networks), and if we need it, we should have access to it. There is a lot of ignorance out there on both sides, provider and patient. The more we spread the word, they better it will be for ALL of us, and those who join our ranks in the future.
For everyone, I think that it would be best to treat your providers not as the enemy, but as people who are ignorant and need to be educated. We need to change our expectations, and realize that there are flaws everywhere (and we see some huge life threatening flaws in the provision of dialysis every day). If the don't want to learn or resist what is best for you, well, then, find out why then try to fix it, like you did. Your simple act of fighting for what is best for your husband paved the way for others to inject EPO at home.
Contrary to the Supreme Court's Opinion, corporations are not people, and the people who work at dialysis units should be in a care-giving profession to give care, if they're not and they don't want to learn, well, then they need a career change. Once we educate the people who work for corporations as to what "Best Practices" are (
in your case, administering EPO at home), then we may have a chance at making the corporations see us as people rather than profit. Sure, they already know that the government and their shareholders are watching them, but now, they are finding out that their patients are watching them too. Like a system of checks and balances, we can make this work. It just won't be easy. I feel like each of us takes on a different aspect of this battle for change, some take on policies and legislation; others write and speak to as many people as possible; and still some just do the best that they can making sure that they are given optimal care, that in its-self shows providers that people can be engaged and healthier - that fights the stereotype of the mythical "non-compliant patient".
Tell your unit's employees what care you need, and work with them. That will foster a better relationship going forward. Dialysis is chronic, much like an arranged marriage - you don't have any say in the matter, but you are stuck with that partner until you either grow and adapt with them, you die, or you start court proceedings. I am all about mediation these days, court is long, drawn-out and expensive. The networks can be a divorce mediator, or a counseling session and if it is really bad, they will work with the state health department and try to put the facility's house in order - if not, the State will pull the plug.
The sad fact is, we need dialysis units, our numbers are growing every day. We need to identify the problems and make the units better. It would be a Pyrrhic victory to close the units. We need more home programs (so let's start asking about it); we need more in-center nocturnal units; we need to educate the staff about us as a patient population. We are individuals who need individual care, and we need to be willing to take responsibility in our care.
Vcarmody, yours is a perfect example of rehabilitating your unit. You saw a problem, addressed it with the unit, and when the unit didn't respond in the correct, healthier therapy that your husband deserves, you went above their heads and they were put on the right track. I wish I had known about this process when I first started dialysis - I saw the problems, and I just let it slide. Every patient in my old unit suffered due to bad practices, and DaVita with their bad practices and management just kept on letting the unit slide into the ground, until we were left with 9 people with Hep C, and when it closed, hundreds left without a dialysis unit in NYC.
They system can be fixed, and taking steps like the one you did is a step in the right direction.
From:
https://www.cms.gov/CFCsAndCoPs/13_ESRD.asp * Summary of the Conditions for Coverage: [Bolding my emphasis - now we need to enforce these rules!]
SUMMARY: This rule finalizes the February 4, 2005 proposed rule entitled ‘‘Medicare Program; Conditions for Coverage for End-Stage Renal Disease Facilities.’’ It establishes new conditions for coverage that dialysis facilities must meet to be certified under the Medicare program. This final rule focuses on the patient and the results of care provided to the patient, establishes performance expectations for facilities, encourages patients to participate in their plan of care and treatment, eliminates many procedural requirements from the previous conditions for coverage, preserves strong process measures when necessary to promote meaningful patient safety, well-being, and continuous quality improvement. This final rule reflects the advances in dialysis technology and standard care practices since the requirements were last revised in their entirety in 1976.
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