Call To Action: Wronged at Emory? Contact Me

Pen on white paper - Call to Action DSC_0001.JPG

If you have been discriminated against in your healthcare at Emory I would be very interested to hear your story, especially if you have had a bad experience in the ER there.

There is a particular practice referred to as “gaslighting” or “psych-shaming”; in effect calling you crazy and undermining your credibility which is particularly damaging to one’s reputation and it can have the effect of slowing down or stopping your testing and/or treatment for your very real medical condition! When this is entered in your chart (even if it is not an official diagnosis but implied) it can cast a shadow of doubt like a black cloud above your head anytime a doctor in or out of that system requests your records.

To those of you just tuning into this blog I’ll recap briefly; this happened to me at Emory’s main Campus’s ER on Clifton Rd. on December 3, 2015.

I was medically neglected for most of 9 hours while in the ER, then abused physically and psychologically by an on-call neurologist, Dr. P. R. M., and then defamatory verbiage was charted implying that I had some sort of mental illness and/or was “feigning” my condition. His resident a few minutes after leaving the room came back and plopped her butt down on my weaker left foot. (See my archived post The Dark Man to read the whole story).

This atrocity was a malicious form of organized bullying and exploitation and I strongly believe violates Federal anti-discrimination laws; Federal Hate Crime statutes, The Americans with Disabilities Act, and The Protection & Advocacy Act of 1986.

Just yesterday the “patient advocate” T. J.” who actually is internal (employed and paid by Emory) made a harassing call to my home in an attempt to shut me up. She informed me repeatedly that “no one will be calling you back” and implied during the call that she has been tampering and interfering with my right to seek redress from her superiors and others within administration to get the complaint properly resolved.

This too is a violation of Federal law. Retaliation and intimidation against a patient for filing a complaint is strictly prohibited and is an added violation. If she were a true advocate she would know that.

I was instrumental in writing the 5-organization contract in Georgia when the P&A Act was first passed and have had extensive training in both individual and systems advocacy, have worked alongside attorneys, and used to be paid to investigate abuse and neglect complaints from patients in a whole range of facilities.

My agency Alternative/Atlanta; Center for Patient Advocacy covered the metro-Atlanta area. Due to funding cuts the original contract was taken over entirely by the organization whose job it was to manage the funding and disburse it to the 5 organizations.

Advocacy is not like it used to be anymore, and sadly patients have suffered because the demand far exceeds the supply of good advocates. This was my line of work before I became too ill to do it fulltime and before Georgia lost most of its funding.

When I did this officially I advocated for my clients as though they were family. I worked late to make sure they got what they needed, was on call nights and weekends, and it was not uncommon to see me show up at a hospital to meet a patient who had been placed in restraints or who had been physically, emotionally, or even sometimes sexually abused by staff.

I understood that in order to properly advocate for a patient one has to look deeper than “he said, she said” and deciding whom to believe. There was never any question as to whose side I was on; the patients’! There were no divided loyalties or conflicts-of-interest and I pursued the course of action and outcome the patient wanted.

I also participated in annual reviews of all advocates nationwide by an independent evaluating agency, and my charting was deemed best in the country of all advocates employed by this Federal Protection and Advocacy system.

I had hoped to one day make a good living at it, as it has always been my passion to help those who need someone to stand up for them to level the playing field. I have a saying;

Old Advocates Never Die;

They Just Lose Their Funding!

Since my funding was cut I have continued to advocate wherever I saw a need, lending my skills on a volunteer basis to a variety of worthy causes. I believe I have been called to do this and that my life experience is in a sense a test-case which has led me to understand many different populations and their needs.

There is nothing more devastating than fighting for ones’ rights alone, but every cause worth fighting for has its true allies. One just needs to find where they are. I believe that very rarely is anything just an “isolated incident”. Most incidents are a microcosm dictated by pattern, and if you look beneath the surface you find what the pattern is and usually the motive as well.

For every complaint you officially get there are likely many more that never reached the official grievance stage for one reason or another. Patients are often too ill or too busy, or they are too upset by what has happened to them to go through all that’s involved in filing an official complaint, compiling the evidence, and following up (sometimes numerous times) to obtain the outcome. If the complaint is denied, then they are required to complete numerous other formal procedures, fill out forms, call and leave messages, and keep documentation of names, dates, places, and other events relevant to their grievance.

This is precisely why good advocates are needed, especially in instances in which the victim/survivor’s credibility is under attack.

All the self-advocacy in the world will not save you if at the very core those you go to for help do not believe you.

When authorities see one patient with a complaint they might not take it as seriously as when there are 5, 10, 50 or 100 such incidents because now we are talking about a pattern of conduct that raises the antennae of state and federal regulators on multiple levels.

Remember that even when things feel hopeless and you feel like the only one, most likely it’s not and you aren’t. There are people floating around, maybe closer than you realize who have been through something very similar. You just need to locate them, come together, and organize to affect social change!

Maybe you have had an experience at Emory in which you have been discriminated against in your healthcare because someone didn’t believe your symptoms were real, you may have been accused of “feigning” or making them up, “exaggerating”, being “dramatic”, being a “hypochondriac”. 

A doctor may have called your condition “functional”, “psychogenic”, “emotional”, “psychological”, “psychiatric”, or “Hysterical Conversion”, “Factitious Disorder”, “Somatoform Disorder” (see my earlier post The Dark Man).

Then you noticed a lack of concern from your treating professionals, their treating you as if you were a minor child and not respecting your boundaries or wishes (see Bull in a China Shop General Neurologist), irritation directed at you, your symptoms ignored or directly disregarded, and ultimately a slowdown or stoppage of care. (For examples of this see my blog post Not Being Believed).

The above terms are buzzwords that are designed with maximum shock value to sabotage a patient’s credibility and an implicit warning to doctors to steer clear.

Let’s just be honest; there is nothing helpful in charting such things about a patient and this can only indicate malicious intent. It is fear-mongering of the highest order and one of the most vindictive acts a doctor can level against a patient because its effects follow the patient long after the doctor is gone. Any seasoned investigator will recognize this immediately and people who work in the ER (if they are honest with you will know the subtext they imply).

If any of this sounds familiar to you please get in touch with me by posting on this blog in the comment box below and I will give you some ways that you can submit a signed statement to me about your experience. If you can also get the statement notarized then that’s even better than just your signature alone.

In my post Educating Doctors of the Future; Affliction as Strength you will read some cogent points arguing against the assertion made by doctors that a patient’s condition is “functional” or “psychogenic”.

I’ve included some links to articles written in peer reviewed medical journals that suggest that patients given this label even when it is given as an official diagnosis do in fact have a real neurological problem.

These citations will help you make your case should you decide to take legal action or even if all you want to do is to get your doctor to stop viewing you and treating you in this stigmatizing way. The post A Few Lateral Moves, but an Ace In The Hole provides you several avenues by which you can file external grievances such as with the Office of Civil Rights and Health And Human Services’ Secretary Silvia Burwell. These are the branches of government most powerful in righting these types of wrongs committed in healthcare settings.

If you are a news reporter and are interested in doing a print of TV story on this or an expose on a longer show, feel free to get in touch with me. I am ready and willing to do interviews and as time goes on there most likely will be others who would speak publicly about their similar experiences.

As Emory has been consistently refusing to take responsibility and to correct this problem I feel it’s imperative now to use all available platforms to exert pressure on the corporation to ensure that they put the best interest of patients first and to stop these unprofessional and corrupt practices. I will be drafting a press release shortly.

–> You can make a statement to The Powers That Be now <—to have legislation drafted that would stop and prevent this from happening to patients on a national level! Several of us organized and have created a petition which will address Institutional Bullying in Healthcare Settings as a unique and enforceable unlawful act treated as particularly heinous because of the extreme power differential between medical professionals and patients and the inherent vulnerability of those of us chronically ill/disabled.

We must rely on doctors to look out for our best interest when we’re ill at a time when we’re at our most vulnerable, and when they don’t they must be held accountable.

It’s only fair, so please sign the petition and add your personal account detailing what abusive/neglectful/reckless, or malicious behavior healthcare professionals and/or healthcare administrators have done to you where it says “Reasons for signing” below the body of the petition on Change.org, and be as precise as possible. Each signature and letter will be auto-forwarded by the site to Secretary Burwell for consideration by her committee and Congress as a whole.

Don’t let these unscrupulous people get away with this type of cruelty any longer! It’s time for the patients to rise up and insist that we be treated as valued customers with the authority to choose what happens to our own bodies, not treated as minor children, the “village idiot”, trouble-makers, nor common criminals for exercising that right!

 

A Few Lateral Moves, but an Ace In The Hole

Luck

Last week I saw my Pulmonologist. Although I was nervous after recent events that he would have doubts about me I was pleasantly surprised to find him just as warm as ever and I think in fact that his learning of the ER debacle only cemented our bond further. Much as these cliquish people would like to see all my doctor/patient relationships destroyed they are not getting their wish. My pulmonologist was hoping I would have already gotten in to Dr. G’s clinic by now, and was appalled at what had happened to me at the ER in December.

This is the one doctor who the evil Dr. M. and his group of bullies cannot screw around, intimidate, nor manipulate, as he is very meticulous about his documentation and he backs up his diagnoses with good, hard data. He is not arrogant (which is nice), but he has the courage of his convictions and is genuinely a good guy who really wants to help his patients. I told him I figure my chances now of ever getting into Dr. G’s clinic are most likely blown due to the actions of those ER doctors and their libelous statements. He said he was not so sure about that. Seriously, I could just hug him right now!

He is the one doctor whom none of the 4 person wrecking crew tried to attack; they knew that if they dared try challenge his work that he would mop the floor with them, as his positions are backed up by 3 sleep studies and he’s pretty iron-clad.

What they didn’t realize is that Dr. T., who is a perfectly good neurologist (but works in the Sleep Lab) looked at those sleep study tapes in order to diagnose my Myoclonus. She, unlike Dr. M., does have a background in Movement Disorders and it was not hard for her to diagnose by seeing the movements in action. Dr. M. and Dr. T.T.J. (neither of which have published in medical journals had arrogantly decided to disregard Dr. T’s diagnosis  based on the gross tests done at Piedmont Hospital. I guess they underestimated her. She has published on sleep disorders as early indicators of neurological disease, by the way.

Nice try, dufuses, but it’s not always due to a structural lesion. It can be neurochemical or electrical in origin and still be very real.

Sometimes doctors in the ER really make fools of themselves when they think they know everything.

My Myoclonus continues to this day (and not only upon falling asleep, although mostly. It also manifests in my shoulders when I get too cold), and it has responded to Keppra at 1000 Mgs./day, reducing the severity and how long it goes on quite a bit. It was Dr. T. who put me on it, and Dr. W. (the admitting neurologist at Piedmont) who increased the dosage to an optimum level. Although it’s not a cure, the fact that it vastly reduces it tells us that the drug is acting on some pathway in the brain. It is highly unlikely to be placebo effect or chances are by now I would be back to being kept awake until 7 AM each night. Thankfully I am not.

It’s been more than disappointing; the non-advocacy provided by Emory’s “Patient Advocate”, T. J., who showed her obvious bias after only our second phone conversation, and still has not answered my questions entirely regarding whom she asked what during her mickey mouse investigation, but I believe that eventually I will be vindicated and those who sought to discredit me and sabotage my healthcare will suffer the consequences of their malicious actions, and so will she for being so dismissive of my very legitimate grievance.

I have had shortness of breath on and off throughout the appearance of these neuromuscular symptoms which seems to come in clusters and then I don’t have it for a few weeks or months, but then it comes back. I’ve had it several times over the past few weeks, and again tonight while sitting upright.

Tomorrow morning I go for some pulmonary function tests which will likely add some more data which will help flesh out my condition further. Dr. M. and his bunch of groupies are probably not capable of understanding the significance this has in neurological disease or at best have a very basic understanding of it, but I’m pretty certain it will completely escape them as it applies to a condition as complex as mine. If they are reading this post I will leave them to vex over it all night.

On Friday I will go into the Lion’s Den (the dreaded Emory General Neurology Department) where I have an appointment with one of their neurologists I’ve never met. I was going to cancel it, as this woman has no reviews online (good or bad), and I don’t like going in blind after what happened, but on second thought figured even though it could be a trap given Macdonald’s connection with the department head, there are ways in which it could actually end up being helpful. (I won’t elaborate on that just now as I don’t want to show my hand to certain people who may not have the best of intentions). I will see what this woman is about and go from there. I just hope she’s not sneaky like Dr. H. and hope she’s not rude or a cold fish. My trust has been violated so I will not be so quick to believe her words and intentions as I might have been before the traumatic event happened. She will no doubt have to earn my trust. First hint of deceptiveness or working against me and she’s history.

Mayo Clinic is a no-go. After my initial inquiry at the particular location I checked on it turns out that they have nothing available until next January and so any patients with conditions of a neurological nature are not being booked at all right now.

My GP is finally coming to terms with my Dysautonomia after he received the erratic BP readings from my Piedmont records (which weren’t initially included, but housed in another department), and realizes that I am probably not going to feel any better until it is treated with IV saline infusion. Home healthcare is willing to send a nurse out to do the infusions but in order to prevent infection on an outpatient basis a port (central line) will  need to be put in my chest; a minor surgical procedure. Although this is not a cure it should help me feel better and get my autonomic nervous system to work more efficiently, as it did in the hospital.

Right now I have no energy, my pain has gotten more frequent and intense, I’ve felt faint more often lately, my constipation is still an ongoing problem despite being put on Linzess, it’s a struggle to hold myself up against gravity, and I feel as though I need to sleep 15 hours for every 1 hour of being up even to go to a doctor’s appointment. I just feel crappy all the way around. Increasing my salt intake and drinking ice water constantly has not been cutting it and each morning I wake up feeling so dehydrated I can hardly tolerate it. Ravenously thirsty, and as if my kidneys are toxic; head-achy and back and core achy.

As of yet the order has not been written, but he has agreed to it, so I think now it’s just a matter of when it will be written, as he knows I can’t go on like this forever. It is taking alot out of me just sitting up long enough to write this post. If it’s the wrecking crew he’s afraid of then screw them in the bootie, I say! The treatment options I pursue are my choice. Every patient should have the ultimate say as to what is and isn’t done with their own body.

There really needs to be a new Patients’ Bill of Rights drafted to address these types of issues. I’m sure there are many others who are going through similar struggles as I am. I’m going to be voting for Bernie Sanders in the upcoming Presidential election as I believe he most closely exemplifies the principles I stand for surrounding healthcare. I have written the Dept. of Health and Human Services periodically to bring some of these issues to their attention as they impact patient self-determination in ones healthcare.

To give input on healthcare topics important to you, write or call them toll free;

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Toll Free Call Center: 1-877-696-6775

The current Secretary is Silvia Mathews Burwell

If your healthcare rights have been violated, in addition to filing internal grievances with the facility, state facility regulatory agencies, and if the offender was a doctor, the state Composite Medical Board (as I did), you can file a Federal grievance through the Office for Civil Rights . I may consider doing this if the hospital continues to leave the libelous charting up on their electronic records system posing as “professional opinion”.

There are several online forms broken down by type of complaint such as HIPPA, Patient Safety/Confidentiality, and Assurance of Compliance

Reference links used in this post;

Bernie Sanders’ position on healthcare:

http://www.ontheissues.org/2016/Bernie_Sanders_Health_Care.htm

Dept. of Health and Human Services – Patient Input:

http://search.hhs.gov/search?q=Patient+Input&HHS=Search&site=HHS&entqr=3&ud=1&sort=date%3AD%3AL%3Ad1&output=xml_no_dtd&ie=UTF-8&oe=UTF-8&lr=lang_en&client=HHS&proxystylesheet=HHS

Office for Civil Rights:

http://www.hhs.gov/ocr/filing-with-ocr/index.html

Office for Civil Rights: File Civil Rights Complaint Online:
https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf