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  • My husband went to the patient advocate at hospital

    This is the letter he wrote to her:

    To the XXXXXXX Medical Center Patient's Advocate,

    I would like to have the policies and procedures for maintaining patient's records at the Life Skills Clinic reviewed and changed. Currently, mental health diagnoses are entered into a computer system that is accessible hospital wide by anyone with access to patient records. I believe this policy is detrimental to a patient's mental health and an unnecessary invasion of a patient's privacy. I would like to have the Life Skills records restricted (or get patient approval) so that only fully trained mental health professionals can routinely access them. As a minimum, I would like to have my wife's Life Skills records restricted.

    I would like to relate a couple of examples that hopefully illustrate the damage that open access to these types of records may cause. My wife suffers from a chronic medical condition known as interstitial cystitis. One of the effects of this disease is chronic bladder pain. She has been struggling with this disease for six years. To aide my wife in dealing with this disease, her doctor (Dr. T.) referred her to Life Skills. She was diagnosed with Post Traumatic Stress Disorder and additionally with 307.89 - Pain Disorder Associated with Both Psychological Factors and a General Medical Condition (incidentally a diagnosis we disagree upon). These diagnoses were entered into her computerized permanent medical records.

    Within a month of receiving the PTSD diagnosis, she was being examined for possible breast cancer (lumpectomy) when her surgical doctor very unexpectedly asked her about the cause of her PTSD. Childhood abuse is not something you want brought up every time you visit the doctor. My wife was caught totally off guard and found the experience quite distressing. I cannot imagine what motivated this doctor to bring it up, but it wouldn't have been an issue if my wife's mental health records were restricted.

    Another of her doctors told her that her 307.89 diagnosis meant to him that her pain symptoms were essentially psychosomatic. You may be unaware of this, but IC for many years was considered a hysterical disease of women and only recently been accepted as a "true" disease. Naturally, my wife is very sensitive to anyone thinking her disease is in her head, especially one who may be involved in treating her symptoms. When consulted about this, the psychologist that gave her the diagnosis agreed that she has a medical basis for her pain and that the other doctor did not fully understand the meaning of 307.89. This is another example of why only fully trained mental health persons should have access.

    HIPAA laws are so restrictive that no doctor will discuss my own wife's medical condition and diagnosis without her presence, yet very sensitive results are put into general computer system with open access. I understand the idea of a "holistic" approach to patient care, but this is an area where we should be on the side of caution and privacy.

    I have discussed this matter with personnel at Life Skills. They did not feel they had either the authority or ability to make any changes.


    ###############################################
    Anyway, what happened is, they showed my husband the Air Force Regulation that required the mental health information to be accessible via computer to all doctors/nurses/technicians DoD-wide. So they refused to alter the diagnosis, or to restrict access to it.

    They had a meeting with the head of medical ethics, the dep cdr of the hospital (with the commander being briefed afterwards), and with the hospital lawyer.

    The lawyer insisted that HIPAA laws were being obeyed and that nothing illegal was going on. (I have filed a HIPAA violation complaint with the appropriate government agency, which I hope might still be investigated. At least I know I did the right thing for other patients by raising this as a question, even if I am wrong about it being a HIPAA violation.)

    So what they decided to do was this (with our permission, which we gave.) They are going to block out names so that no one in the hospital will "know" it is us/me. And then at the monthly training session where ALL docs in the hospital must attend, no exceptions, they are going to read the letter and discuss sensitivity to this issue. Teaching doctors to basically not act like jerks when it comes to these diagnoses. They will also raise the issue at an annual meeting of hospital commanders, so this issue can be discussed on an Air Force-wide basis and ideas can be generated as to whether or not changes should be made to better protect patients.

    So, that was better than nothing at least. I count it as something of a victory. I hope that this will mean there will be less trauma for other patients who have mental health diagnoses entered into the computer system.

    So I guess I'm pretty much satisfied. I would have preferred for that diagnosis to be stricken from my records, since I don't agree that my IC pain is all in my head, but obviously I am not going to get my wish granted on that, so I will take this instead.

    Blessings,
    and thank you all again for being so supportive. It horrifies me to know how many of you have also been told "it's all in your head" and I'm thankful that there is one place in the world where I can come, where people really do understand how bad it feels to be told that.
    Lori

  • #2
    That is wonderful of your husband to fight on your behalf

    I know it sounds like it isn't much, but reading the letter to a bunch of doctors at a meeting actually can help. I've seen it done and seen the embarrassment on the faces on some of the doctors and the shuffling around because everyone was uncomfortable-- most realized they were not being sensitive to their patients and yes, the votes were to change the issues at hand. I hope this is the case for you!!
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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    • #3
      Wow Lori, That was very nice of your husband to write that letter and get thier attention..

      I am like you it makes me so mad for doctors to just think the pain is in our head..I think maybe they say its in our head, because they just dont know enough about IC, so they dont want to feel dumb,. so they put it on the patient..
      Well I am glad at least your name want be available for everyone to see...

      And yes its nice to be able to come here and know there is so many of us going through the same thing...

      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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      Meds I have Tried:
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      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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      • #4
        *Applause...Applause* for Hubby, Lori. That was one great letter he wrote.
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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        • #5
          Thanks, everyone! I just hope that this will make some changes so that other patients like me won't keep going through stuff like this from doctors.

          Blessings,
          Lori

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          • #6
            :woohoo: What a great hubby Lori. I feel so bad that you have to go through all of this.

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            • #7
              It really is unfair that such sensitive information is out there for everyone to see. I am really proud of you and your hubby for standing up for your rights. Way to go!!!! :woohoo:
              Cali

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              • #8
                I'm glad that your husband stood up for you! And also that the hospital did respond.

                I always worry a bit though... What about those of us who are single women? Going alone through these things is tough, and there are times when I think I'm not being heard, or am being brushed off by my doctors. Taking my mom with me has actually resulted in more patronizing or aggressive behavior by medical staff. Sadly, I think it is the male presence that makes the difference, not just that another person is there.
                Kadi

                -------------------------------------------------------------
                I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

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                • #9
                  i'm so glad you both took the time to fight for your rights and privercy.Congratts! I'm sure it has made a difference in the system.You should both be very proud of yourselves ! Hugs Sandra
                  "Never Give Up."

                  To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

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                  • #10
                    I agree with you, Kadi. My husband and I have both noted the radically different treatment I receive, depending on whether or not he is present. Now, when I have to see a new doctor, if my husband is not available I bring my father. As a forty year old woman, I find the necessity of having "Daddy" with me at the doctor's office both ludicrous and insulting, but that's what gets results. At times, a friend and I have joked about "just hiring some guy off the street," to bring to dr. appts. I'd really like to know where physicians get the idea that only men can fully understand what they say. My husband and I have about the same level of education, the same intelligence. The only difference is in the anatomy.

                    Lori, you and your husband did a great thing. I believe it will make a difference, and although of course I'm sorry that you have already been hurt by this policy, you may save many future patients from the same fate. You may never know how much difference you've made. Kudos to your husband for his fierce defense of you!
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

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                    • #11
                      :woohoo: hubby :woohoo: he rocks
                      'The will of God will never take you where the Grace of God will not protect you.'

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                      • #12
                        What a blessing to have such a wonderful husband. I know you have to be so proud of him for standing up for you. That is awesome :woohoo:
                        Miss Bessie

                        Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                        Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                        Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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                        • #13
                          WOW! How fantastic your husband did this! Between the two of you, you've certainly made an impact and many will benefit because of the actions you both have taken. How wonderful you have such a caring and understanding partner. You certainly are a dynamic duo!
                          Annie

                          IC
                          Ulcerative Colitis and IBS
                          Pelvic Floor Dysfunction

                          _________________________________________________________
                          Retirement is great! Work is highly overrated!!!
                          ---My dear hubby

                          ________________________________________________________
                          Never go to a doctor whose office plants are dead.
                          ---Unknown

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                          • #14
                            I agree with everyone. You definitely have a "keeper"!


                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

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                            • #15
                              Congratulations Lori!! It may not have been a big victory, but even small ones are significant! Your husband sounds so wonderful - and he obviously understands your pain and is extremely supportive of you! I wish all spouses and family members could have that kind of attitude! I hope that this experience will help change the rules to protect patients in the future. I am sorry that happened to you, but it looks as if some good might come from it after all! You are truly an inspriation - to be able to stand up for your rights against doctors who think they know everything. You are an !!!
                              I am Jenny.
                              "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                              Dx:
                              -UTI's and Kidney infections: Since 6 months of age
                              -HPV: November 2005
                              -Advance high-grade pre-cancer cells found in cervix: January 2006
                              -LEEP procedure: January 2006
                              -IC: January 2007

                              Medications (Began Treatment 3/27/07):
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                              -Elavil 25 mg
                              -Hydroxyzine HCL 10mg
                              -Sanctura 20 mg 2 X per day (added 07/24/07)

                              Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
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                              -2cc Sodium Bicarbonate 8.4%
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