A KidneyBuzz.com viewer wrote, "Hello, I have a question about fistulas. I have been on dialysis now for over 11 years and I along with all my dialysis patients who have fistulas are constantly being told that our accesses are our lifeline and that we have to take care of it. I completely agree with that, I use vitamin E on my access every non-dialysis day and use a stress ball constantly. My access is 38 years old. I would like to know why dialysis staff allow themselves the right to do anything they want when it comes to canulation. A canulator is allowed to hurt you, not put needles in correctly, infiltrate you and not receive any kind of admonishment or reprimand for their not doing their job correctly. The fistula is our lifeline so why are staff given total immunity for their actions? Where's the protection?"
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Good clinical care improves survival in Hemodialysis patients, according to a study published in the US National Library of Medicine, National Institutes of Health. The same is likely true for all Chronic Kidney Disease patients. However, many patients do not know what to do or who to turn to when they feel as though they are receiving less than quality care. Fortunately, there are agencies that Chronic Kidney Disease and Dialysis patients can contact to correct any lapse in care in order to help improve health outcomes, quality of life, and longevity.
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“Quality” healthcare has a wide variety of meanings. To some Chronic Kidney Disease patients, prompt response to Dialysis Machine alarms means “quality” care. There are those who define “quality” healthcare by being treated politely by their Patient Care Technicians, Nurses, and Nephrologists. While these are important, healthcare quality for the Chronic Kidney Disease Community generally refers to the goal of providing appropriate high-quality medical resources to all patients who need them.
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In general, Chronic Kidney Disease patients may measure the quality of their care based on the following parameters which will highlight how well your Healthcare Team is doing in a number of important categories:
- How well do your doctors communicate with you (showing compassion and politeness)?
- How easy is it to access your necessary services?
- Are you getting effective treatments and follow-up care?
- Are you able to avoid complications and manage pain?
- Are you satisfied with the overall support that your Healthcare Team is giving you?
Fundamentally, when Chronic Kidney Disease, and especially Dialysis patients, go to their Nephrologists or Treatment Centers they want their healthcare professionals to fix their problems and help make them feel better. However, this is not always the case:
Sandy Bureros (Dialysis) said, "In 2006 I was diagnosed with End Stage Renal Disease. Nothing can prepare you for the ordeal that is dialysis. I have been on dialysis 5 years. During that time, I had to deal with people who were not at all caring about the way they treated the patients. We were herded in like cattle to our seats and treated as though we were sub-human. When I began complaining, I was told that it was too bad that I did not accept the way I had to live. My arm was shredded."
Terry Taylor noted, "I am a dialysis patient of 9 years. I was wrongfully discharged and blacklisted from my dialysis center after reporting wrongful treatment. No dialysis center would treat me."
Robbie Waters wrote, "After going on dialysis I was given a surgical fistula in my upper left arm. Three months later it was filled with stents, 80% destroyed by careless in-center technicians. In order to save what remained, I traveled long distances to receive training in a Home Hemo program..."
If you have concerns about the care that you are receiving, then consider outreaching to advocacy agencies including:
Dialysis Advocates (Washington D.C. - (202) 567-1616): Arlene Mullin employs a staff to ensure that quality patient care is maintained. Mullin confers with "Medicare officials on a regular basis, drawing attention to problematic conditions in clinics and clinic systems and following through until a satisfactory resolution is achieved," according to the Dialysis Advocates website.
Dialysis Patient Citizens (DPC) (Washington, D.C. - 1 (866) 877-4242): DPC’s mission is to improve dialysis patients’ quality of life. This organization suggests that a critical element for a quality life in dialysis patients is access to dialysis care.
End Stage Renal Disease Network (18 Networks in regions across the country - (715) 354-3735): The Forum of End-stage Renal Disease Networks advocates and monitors the quality of Chronic Kidney Disease, Dialysis and Kidney Transplant care in the United States.
Share a personal instance when you experienced less than quality care. What did you do? Did the matter ever get resolved to your satisfaction? We value your responses and the interaction of our over 39,000 Facebook Fan Page Friends. Do not be shy, perhaps your experience may inspire others to take action if they are suffering poor conditions.
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