Patient Advocates: We Need You!

I’ve been away from life-as-usual for awhile.  It’s been a roller coaster:  from the lowest of lows losing my mother-in-law to ovarian cancer (you can read more about the problems with treatment here)  to the highest of highs — having our four kids and their families visit from all over the country.  I’m ready to return to some normalcy!

Having closed up my computer and ignored email for several days, I returned to hundreds — literally hundreds — of emails.  I was able to delete the first 300+ — spam, of course — and now I’ll deal with the 100+ that still require replies or some sort of action.

Among them are a dozen requests for contacts with patient advocates.  They are from all over the country:  St. Louis, Missouri;  Lewisville, Texas, Northern California, and many other places — and I can’t help.  Frustrating, frustrating, frustrating. 

This brings to light a real problem which I’ve found much of organized healthcare wants to ignore.  The two biggest complaints I hear from patients both fall into this healthcare hole. 

The most prevalent complaint is that someone has seen several doctors, had several tests, perhaps at different testing centers, and there is no one to put all the information together to arrive at a conclusion.  There’s no umbrella person.  No conductor of their healthcare symphonies.  Whereas we would think their primary care physician would oversee that, sometimes the referrals are daisy-chained;  that is, one doctor sends them to the next, sends them to the next, etc — and no ONE person can help them put it all together.

The next biggest complaint I hear is from the person who just can’t get diagnosed with anything they can get their arms around.  Symptoms get treated, but problems persist.  They get sent to specialists, none of whom will talk to each other, and no conclusions are reached.

There is a real need for people who can help translate this information for patients — who are they?  I know is some places they are called “caseworkers” — but the bottom line is that I can’t find them to refer them.

If you are a patient advocate, or if you know a patient advocate — please contact me.

Next steps:  beginning to put together educational programs for those who would like to study patient advocacy as a career.  Are you interested?

OK — back to answering all this email!  I did find one fun one — a voice from my past, a fellow Bucknell University, Class of 1973 graduate.  (Hey Bev.  I’m so pleased to hear from you!)

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7 Responses to “Patient Advocates: We Need You!”


  1. 1 RubyShooZ July 12, 2007 at 11:16 am

    Thank you Trisha for doing what you do. I’ve been guilty of lurking here for a while now and I’ve added you to my blogroll but have yet to comment until today.

    I have found your blog and many posts informative and just downright astounding at times. I think we share many of the same sentiments about “healthcare”.

    It sounds like you have had a nice time away from the computer recently and I can attest to how therapeutic it was for me to do so as well.

    You are much appreciated and I thank you once again for being here and saying what needs to be said.

    Sending good vibes, peace, love and understanding!~

  2. 2 Carver July 12, 2007 at 7:36 pm

    I have recently found your blog and I am glad to see the issue of daisy chain specialists being addressed here. I have been dealing with that myself, in terms of my own care. I have a string of good specialists and a couple of them do pass reports back and forth but the others don’t. If I were to pass on one tip I’ve learned it is for the patient to have their own copies of the radiologist’s reports on scans, pathology reports on any biopsies/surgeries, and blood work reports to take to appointments, as well as a medication list. It’s probably smart to get copies of the clinical notes but I don’t do that. I have a folder I stick in my bag whenever I go to any of my doctors and I’ve even given them copies of scan reports done at their hospital which they couldn’t find in the file on me.

    Best wishes, Carver

  3. 3 Trisha Torrey July 12, 2007 at 8:04 pm

    Excellent advice to those who have been the victims of daisy-chaining, Carver.

    Thanks so much for posting.

    Trisha

  4. 4 GLane July 18, 2007 at 4:00 pm

    Hi Trisha,

    This is my first visit to your site. Thank you, for sharing the reason behind your passion for patient advocacy.

    I spent nearly 12 years in the health insurance industry, at the claims operations level. Luckily, each of the three companies where I worked had high ethics and morals, when it came to plan offerings, customer service, and claim consideration. Often, decisions about contractual or legislative language which had room for interpretation were made in favor of the patient. I watched this happen several times, at the cost of profit. Sadly, two of those three companies no longer have those lines of business. It is no wonder; competition is cutthroat in the industry.

    Your personal story brings back my mom’s experience, as she sought treatment for squamous cell carcinoma, about 10 years ago. The prognosis was excellent, with a cure rate of over 90%. We thought it was going to be pretty simple, but we could not have been more wrong. Special mention goes to the ER physician who originally misdiagnosed the lesion on her upper ear as something like a boil, and lanced it. That lesion eventually grew from the size of a pencil eraser head to a tumor which filled her ear canal and was spilling onto her earlobe. Three months of prolonged waits on lab results, insurance company referrals to out-of-network specialists, unapproved requests for surgery authorization because the specialist was out-of-network, and general foot-dragging went by, before my mom finally underwent a seven-and-half hour surgery, performed by co-surgeons, to remove this tumor, along with the lower half of that ear. The canal is completely exposed now, and she has deep incisional scarring, some keloided, on either side of her neck. Miraculously, she did not lose any hearing. The experience left her mentally adrift for a while. Physically, she deals with constant discomfort or pain from the scarring. All of this, for a lesion which was so small when she first went to the doctor. The insurance company is still in business today, not surprisingly. It was an eye-opening experience for the whole family.

    Today, I spent nearly 30 minutes on the phone with my husband’s insurance company. It took that long to get one rep to understand that my daughter’s claims had been denied in error for COB; their provision goes by parents’ date of birth, and no one had bothered to enter mine from the application. I am rather sure that this insurance offshored their customer service; each rep has a similar, thick accent, and grasp for the phrases they mean to say, frequently. I learned that they had the information they needed the whole time, and the nearly $1000.00 in denied claims will be reconsidered. We shall see, in a couple of weeks when I call back to make sure it has happened. And yes, if you were wondering, his insurance company is one of the BUCA’s. After this phone call, I could not help but wonder how many other patients are not able to navigate through the murky waters, and end up in one-sided medical disputes, bad credit situations, or just plain despair.

    As I learn more about the larger companies, either in personal interaction as a consumer, or listening to others’ complaints about their own challenges, I want to learn more about what I can do to help.

    Please let me know, when more information about advocacy educational programs is available.

  5. 5 doctorblue April 29, 2009 at 12:45 pm

    Trisha,

    You are the culmination of my dreams — the patient advocate I hope to become if I can ever find someone to help me find a knowledgeable surgeon with the will to help me get well.

    I’ve been disabled for five years after years of being referred from one doctor and test to the next with no proper diagnosis nor treatment. I assembled my medical records and self-diagnosed after the money and insurance ran out. I have a systemic bacterial infection and need gastrointestinal surgery. I qualify for Medicare in August, but I’ll be homeless or possibly dead by then. I have no family nor support group, and I’m too ill to be proactive in going out there and finding help other than through the internet or by mail.

    I was a successful commercial real estate broker for 20 years. I have a masters degree in journalism from Syracuse University. I never thought I’d find myself in this situation.

    My story is partially documented in my blog http://doctorblue.wordpress.com.

    I’m hanging on by a thread and really need someone’s help. If I ever do get better, I have vowed to dedicate the rest of my life to doing the things that you are already engaged in — helping others like me get the help they need and trying to effect change in our health care system. I have no interest in doing anything else.

    My last blog entry is a Hail Mary pass to anyone who will help me. If no one does, the story ends with doctors getting away with manslaughter in a society that reveres only money.

    Will you help? Will you take the “Write This Reality Story’s Ending” challenge?

    Please just don’t refer me to the plethora of health-oriented non-profits I’ve already contacted. The many individuals who work for these non-profits with whom I have spoken clearly demonstrated that non-profits are in the business of writing about helping patients for grant money rather than actually helping patients.

  6. 6 Denise Sikora January 8, 2010 at 5:38 pm

    I am a patient advocate located in NJ. I worked in the medical billing field for 10 years and decided to open my own company to advocate for people who have many medical bills and don’t know what to do about them. My clients come from all over the United States with a wide variety of bill issues; from just one bill that isn;t getting paid, to many bills from a catastrophic illness.


  1. 1 The P Word: Easier Said than Done « Every Patient’s Advocate Trackback on July 20, 2007 at 9:14 am
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