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.
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.