My dh is a newly diagnosed diabetic. And since his diagnosis, he has had nothing but problems trying to get information and help. Today, he had to work, so he asked me to go and see the CDE and nutritionalist. He was to get some information about questions that we haven't been able to get answers to before this. I have been diagnosed for 11 years and he has gone to everyone of these appt's. with me. So he has a pretty good knowledge of diabetes from that. But we had specific questions concerning h imself, He wrote them down for me, so they knew it was coming from him., I check with ins company, docs, legal people to make sure that I could do this, and his ins. would pay. All said yes,. When I got there, these two people wouldn't see me, because of HIPPA things and they couldn't talk to anyone but the patient.. I had a letter from the ins com, my dh saying it was okay, Nothing. After this last experience at education with a health educator, he said never again. I know I am enabling him NOT to find out, but right now that's not a battle I choose to fight. We just need information,. I was upset, figured something odd like this would happen,. But aside from making dh go himself with me....what do you do when you can't get info from medical people whose job it is to help you?
I understand that the situation would be very frustrating!! The HIPPA protections are nice but I shudder to think of how much they increase the cost and decrease the efficiency of medical care in the US. What a complete waste of time and astronomical amounts of money! I'm sorry that it was your time today. Are they set up to answer questions via email or something like that? I don't ask a lot of questions myself but I would think that most clinics in this day and age would be set up to do that?
Also, perhaps you can ask the questions here, if you/ Mr. Cathy are comfortable with that? I think that a lot of times, there's enough "checks and balances" here that any wacky answers would be likely to get "checked", as it were?
My wife has gone to most of my D appointments (all of them in the first 6 months) and we had the Dr note in my record that she has full access to discuss with him. That being said, I think Acidrock is right. In my experience the nutritional and diet info I got here was FAR superior to what I got from the "professionals". This is probably because it is based on real world use and not classroom or popular theory. I was able to find out what had worked for others and then adapt that to my own body/needs. Also, a lot of the information is shared with links to get more complete information or even study results. Plus all of this is free and done on your own time schedule! Honestly, this community has been the single best help in managing my T1D. I have a great doctor, but I can only expect or afford so much help from him.
I have a notarized letter giving my husband access to my info, but haven't had to use to to know if it will be accepted. I asked my doctor's office exactly how it should be worded.
Agree with Randy & Acidrock. Info I got from a nutritionist & CDE was useless. Mostly, it was misinformation:) They both recited high carb ADA party line & handed me brochures. Waste of time & money. I've learned far more from Tu & doing my own research.
Randy,
It is great to read how the community has helped you! The power of a community of informed and empowered patients has virtually no limits!
Would you consider sharing your thoughts about your experience in TuDiabetes in the form of a review about the Diabetes Hands Foundation here?
http://greatnonprofits.org/whitelabel/reviews/diabetes-hands-foundation
It's also not just about HIPPAA and all that. As someone going into the medical field, I would also be concerned about the message you would be delivering to your husband. I would want to speak with him directly so that I would know exactly what he's been told and what his concerns are. Having you there with him would be an asset, because you could help remind him of what issues he's been having and would also help him to remember what was discussed afterwards. I'm not saying that you personally would be unable to act as a liason between your husband and the educators, but that if I were the CDE, I would not be comfortable with it. They probably were using HIPPAA guidelines as an explanation for this, as it is less likely to be offensive.
Here's the scoop, he's not going to go because of the first Health Educator who met with him and I from the clinic we go to,.
She was acting very unprofessionally, didn't have a clue, and went over things that we already knew. I had called her and told what we needed to know before we came, not too much basics, just answer these questions and any other info that we might have. She said he didn't have to have a meter to check himself, cause he was only 7,5 on the a1C scale....if he wanted to use mine that would be okay, but there is no need to check your blood sugars. She thought maybe he could lose some weight, after he very proudly told her he had lost 50+ lbs in the last year, nothing positive came from her. She also kept touching his Santa Belly, and told him he had to get rid of this, and if he hadn't eaten his way to diabetes we wouldn't have to be there. That's when I blew and we left. To get him to go back for anything or go anywhere is going to take some work. But I think he will go with me, and I am scheduled for my yearly visit with the CDE in about two months, right after our next A1C...and YES he did go with me the last 11 years, so he knows a lot, just not about himself.
INHO, Hippa and other rules like this are among the worst things that our country has instituted. My son was in a car accident at the age of 18 + 1 day, The accident occurred 200 miles from home, he was in a community hospital...they couldn't speak to me. They couldn't tell me if he were dead or alive, what his condition was, should I come there because in our state he was an adult. HELLLO! I had to have a sherriff from our county call and get info and relay it to me. He was a complete stranger,,,I gave birth to him. Doesn't this sound stupid to someone besides me? I did have letters for each of the family members made up right then and there....and YES I can see the need for something like HIPPA, but have yet to hear or see of it working correctly for anyone, Thanks for the ideas. I think we have things under control for today.
You research and ask here. we are all friends here and care. I've learned more here through others than the doctors have told us about my son since he went into DKA in September. Since he got so sick I got a Power of Attorney so I dont have to fight to speak to people. Guess all the years I took care of my father taught me some good. Its tough as I'm finding out but with each block is a open door some where just dont give up! Make friends and just ask questions. WE Care.
I had it notarized so it would be CYA because that's what they really care about. You can designate anyone, or as many people, as you like is my understanding.