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Health Care Consumer Advocacy & The Empowered Patient

By November 8, 2011 - 6:22am

This group caught my attention because I am currently in graduate school earning my masters degree in health care consumer advocacy with a focus on women's health - particularly perimenopause and menopause.

I was hoping there would be some interesting conversations revolving around health care consumer advocacy. But, I haven't found any just yet. I wanted to throw this out there and see what might surface.

I also wanted to mention an excellent book I read recently called "The Empowered Patient" by Elizabeth Cohen. She is a health care and medical writer for CNN.

It is an excellent book. An easy read and one that I would highly recommend for anyone who is frustrated with their experience in the medical community - ahem.....and aren't we all? :)

Anyway, thought I would throw this out there and see where it goes.


By March 5, 2012 - 10:14pm

Thanks Magnolia. The herniated discs were removed and I have a 2 level acdf with hardware and instrumentation. That awful stabbing pain is gone now but I'll never be 100% better.

When I went in for my 6 week post op at the Neurosurgeon he was there. I was seeing his PA(who I trust unlike most PA's I've come across) and he saw me while he was greeting his next patient. He smiled and said "hey!" I went over to him and gave him the biggest hug and thanked him. If he hadn't seen me I probably wouldn't be here-suicide had crossed the mind a lot in those dark days. He said my xrays looked great and that I looked much better than the last time he saw me.
His PA is well educated in the field of Neurosurgery. She always gives me a hug when I come in. During my visit I apologized for being such a b*tch at first and said I was just so tired of being turned away. I did feel bad because they had treated me unlike the rest and with dignity. For a moment she didn't know what I was talking about but that "oh I remember" look came to her face and said apologies were not needed. She said that after looking at my MRI she felt so sorry for me because I had been suffering for do long and no one would help me.

Tonight I am suffering from arthroscopic knee surgery to remove torn meniscus. I thought it would be a piece of cake since I had gone through the spine surgery with very little pain. But as soon as the hospital drugs started to wear off boy, did the pain hit. I had GA-they didn't tilt my head back and used a scope to guide the tube. They say to stay ahead of the pain but I have a low pain threshold so the narcos like percocet don't work. Besides when a person is put on these drugs it's because the other drugs haven't worked. You are usually already in severe pain so how are you supposed to stay ahead of IT? So if the pain is as severe tomorrow I plan on calling the orthopedic office for something stronger. It's going to be agony trying to sleep tonight.

March 5, 2012 - 10:14pm
By March 5, 2012 - 4:58pm

I loved your comment and reading your story.

I have 2 herniated disks, scoliosis, arthritis and degenerative disk disease in my lower back. So, I know EXACTLY what kind of pain you are in.

And you are right, you do have to advocate for yourself. But, most people don't have your hutzpah, unfortunately. You got the outcome you deserved because you took the bull by the horns.

That's really quite impressive.


March 5, 2012 - 4:58pm
By February 13, 2012 - 2:31am

From my experiences over the past year due to my current physical condition YOU have to advocate for your health care-ain't no one else going to.

I don't have insurance and have been treated like crap because of it. I suffered for 7 months in excruciating pain from 2 herniated discs and could find no help from an orthopedic surgeon or neurosurgeon because I am self pay. I went to the ER at another hospital here and was referred to their on call NS and was elated but that didn't last long. I finally had enough when the on call neurosurgeon's receptionist told me he didn't take cases like mine because she didn't consider it acute. By this time I was so mad-if you've ever had to experience the pain of a herniated disc you can understand why. When the conservative treatments did nothing and my leg went numb that was the breaking point.

The ER doctor I saw told me the beauty of the ER is that if you are referred to the on-call doctor they MUST see you at least one time. After that they don't. All I wanted was a consultation so when the woman on the phone made up her mind he didn't see people like me I got mad and called the hospital up. The ER in charge nurse looked at my file and said they really should see you. So he called them. I also put in a call to the patient liason and got some snotty nurse who told me the ER doctor had no business referring me to the NS in the first place and that no, he didn't have to see me. Then she proceeded to give me a lecture on not having health insurance. Well, that really lit my fuse-I wrote a really nasty email to the info.com address they had and also contacted the joint commission on hospitals and filed a complaint.

The next morning I received a phone call from a patient rep who said she had talked to the doctors office and that they had to see me and she said that the nurse who gave me the lecture would be dealt with. I also received a letter in the mail apologising for the way I was treated and to be sure and keep my appointment with the NS which I did.

Funny thing about him-his first words to me were that I had a significant spinal cord compression that needed to be dealt with. I graciously thanked him for seeing me and he said he had no problem with it. He said he could imagine the pain I must be in just from looking at the MRI. After the surgery he told me my disc had just exploded into the canal and they had to tease the pieces out.

So like I said, YOU have to be your own advocate. I was given the runaround for 7 months while in pain that was unbearable. I was treated like a drug seeker at the first hospital system I went to. I even had one snotty nurse ask me (while I was crying from the pain) what I wanted them to do for me. On one of the records it states that patient was given instructions on aftercare and strolled out of the ER with a normal gait with prescription in hand. I have the records because the NS offices gave them back to me after they made copies. I went to that same ER 4 times before one doctor mentioned I needed an MRI and said in my report that a herniated disc was a possibility.

So that's how I feel about consumer healthcare advocacy.

February 13, 2012 - 2:31am
EmpowHER Guest
By Anonymous February 5, 2012 - 11:33am
Hi Magnolia Miller, Welcome to EmpowHER. Thanks for sharing this with us. Am sure here many will find support and answers from others feeling the same. Best, DaisyFebruary 5, 2012 - 11:33am

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So many changes in the healthcare system! How can a patient keep up? Doctor's have less time and the medical world has evolved over the decades. It's time for us to work with our doctors and become better consumers of our own health. Let's talk about how to do that!


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