Plugging The Loopholes in Civil Rights/Patients’ Rights Laws

All too often the mistreatment of patients with disabilities/medical conditions/chronic illness is regarded by society as a lesser offense (or not an offense at all) and its survivors’ resulting trauma not acknowledged by the general public, including those agencies whose … Continue reading

Cease and Desist Letter Sent To Emory Healthcare

Blue Medical Scales of Justice

I found out that mercifully Dr. V had written the order for the IV Saline and faxed it over to my new primary care physician (outside of Emory), but apparently the new PCP needed her to do a physical examination. We’d had so much piled up from Dr. V’s 3 months away that there wouldn’t have been time for that even if we’d known it were needed, but I had no idea. It wasn’t until a nurse responded to me on the Patient Portal that I knew there was any hold-up.

On Thursday, June 16th I attempted to set up my next follow-up appointment, and was thwarted from doing so because of the block Emory’s Chief Medical Officer had placed on my account. Yesterday (Friday) I tried again after leaving a verbal message of Patient Relations’ voicemail that Emory was violating Federal Civil Rights Non-descrimination laws, and that they need to remove the block on my account immediately. I received no response Thursday, nor Friday, and on Friday when I again attempted to schedule an appointment with Dr. V for sometime in the last two weeks of June or for once I’d have returned home from Cleveland Clinic and UF from the two specialists in mid to late July, I found that the block was still in place. Today I decided to submit a cease and desist letter via Emory Healthcare’s Patient Relations Department on Emory’s website. Here it is below; 

Letter to Patient Relations Sent Saturday, June 18th Via Emory’s Web-form

 I called Patient Relations and got only a voicemail at your phone number (I believe it was on June 16th around noon) at (404) 778-3539. I left a message regarding the fact that Administration, (specifically P. Z. C., MD) has issued a block on my ability to schedule future appointments with any of my doctors at Emory. A licensed physician who does such a thing, superseding and thwarting care by a patients’ own physicians is violating the Hippocratic Oath by maliciously standing in the way and creating barriers to access when the patient is in need of medical care.

 Because of her actions I was denied care for a severe urinary tract infection at Emory Gynecology when I attempted to set up an appointment with my established doctor there. A nurse by the name of M. (at Emory St. Joseph’s Clinic which had the earliest available Gynecology clinic appointment) called me back to inform me I had been “dismissed from the clinic” and rudely talked over me, stating I’d have to go someplace else. When I informed her that refusing care by a non-profit organization is a violation of federal law she yelled into the phone that I’d have to go somewhere else, and then hung up on me.

 I believe this is the same M. that is a nurse of my former primary care physician at Emory St. Joseph’s Clinic, but in Primary Care. The Clinic I was trying to get an appointment with was Gynecology so I do not know why a nurse from Primary Care was calling me.

 Gynecology could not call in the needed antibiotics without seeing me first, so I had to make cold calls to outside physicians on the spur of the moment in order to catch it in time and even then it took all of 14 days to clear it up. I have chronic susceptibility to e-coli infections of the urinary tract. If a mobile physician group had not stepped in to write the prescription for Cipro ASAP I would most likely have had to go to the ER because it was already beginning to affect me systemically. Being an OBGYN herself I am sure Dr. C. is aware of the effect untreated e-coli has on the human body.

 I informed Patient Relations that this is against federal law and that therefore this block must be removed immediately or the corporation risks federal discrimination charges. My call was not returned by the end of business that day nor the next full day (Friday, June 17th). On the 17th I again attempted to schedule my follow-up with my neurologist at the Executive Park location who fully intends to help me and wants to see me on an ongoing basis. She has been away on maternity leave and there was alot that was backed up needing to catch up on when I saw her last on June 3rd and she needs to examine me to start certain services I need. Although I am scheduled to see some out of town sub-specialists I still want and need to keep her as my local neurologist.

 Such decisions should be between me and my doctor and therefore Administration needs to stay the hell out of my confidential relationship with my doctor. I do not know this corporate executive Chief Medical Officer and although she might be a physician she does not have the standing to make medical decisions above the heads of me and the doctors that I choose to enter into a doctor/patient relationship with. This is a malicious and retaliatory act on the part of Administration to prevent me from proving my condition and setting the record straight. Their actions show clear-cut manipulation of my care and an attempt to prevent my obtaining the true diagnosis of my disease-process.

 Retaliation for filing a grievance is an added violation under federal law from which no Emory regulation will provide them immunity. The further they push this agenda the more violations they’ll accrue.

 I don’t know if certain petty individuals consider this their idea of fun or what, but it is a very dangerous game they’re playing, I do not find it amusing and I intend to defend my civil rights to the fullest extent of the law, as a patient with several already established serious autoimmune diseases, I consider their acts of obstruction, patient-dumping, and medical neglect as a corporation a threat upon my life.

 In addition to having the ban lifted, I would like to know exactly who initiated it, why, and how this top executive was brought in.

 This harassment of me has gone on since December when I was abused in the Emergency room and reported it, and it is very clear now that the corporation is attempting to dispense with me as a way to further cover it up.

 Obviously, the corporation is corrupt all the way to the top brass and uses strong-arm tactics to silence those who speak honestly about incidents such as what happened to me (and it is a matter of public record that they’ve resorted to dirty tricks against their own former employees whom have had the courage to stand up and become whistleblowers to report corporate corruption when they saw it at Emory).

 When sending a man to scare and beat me into submission didn’t shut me up, they decided to resort to kicking me out.

 Clearly they underestimate a woman fighting for her life. Given my advocacy background it would be in their best interest for them to cease and desist any further interference with my medical testing and treatment, get out of the way and allow me to pursue my medical care in peace with those doctors with whom I have a good rapport; with those whom genuinely want to help me, whose motives are pure and are in the field of medicine for compassionate reasons.

 I do not bother anybody who doesn’t attack me first, and I am only interested in justice, maintaining my freedom to choose my medical relationships, to obtain my care in a timely, respectful, and compassionate manner, to be allowed to give honest feedback without fear of reprisal, and to be afforded my civil rights to healthcare without interference and impedance, my care plan determined jointly between me and the doctors of my choosing without any sort of conflict-of-interest, pressure or duress from “above”.

 There is absolutely nothing unreasonable about that “expectation” and nothing that justifies my being blocked from scheduling appointments at Emory Healthcare nor anyplace else.

 I am writing you on Saturday, June 18th and I look forward to hearing from you on Monday, June 20th that the block has been lifted and that I can resume scheduling appointments with doctors I wish to continue working with.

Pippit Carlington

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The letter was submitted at 6: 55 PM, Saturday, June 18th, 2016. I hope this will get through to them that I am serious and that they need to stop these vicious and irresponsible games. What I’ve been subjected to over the past 7 months is institutional bullying and I don’t take that sort of cruelty lying down. If this corporation intends to kill me either actively or passively it will continue to be documented in as close to real time as possible and sooner or later they will be caught and the full weight of the law will come down on them.

Just as Administration is watching this blog, so are others whose job it is to protect patients like me, and I’m sure that I’m not the only patient this type of thing has happened to at Emory. It may be that I’m the first patient to make it public, but a good background search will reveal that Emory has a long and sordid pattern of vicious and underhanded attacks against dissenters, and of discriminatory practices (mostly on the University side), but there have been documented incidents of corruption starting with antisemitism, and others ranging from research study manipulation and NIH funding fraud to Medicare/Medicaid billing fraud some of which included double-dipping; billing Medicare and Medicaid for services which had already been paid for with research funding.

In each of these cases the entity sought to discredit the whistleblower who had exposed the particular malfeasance by exploiting whatever vulnerability in that individual they could, be it their work reputation, going after their medical license with lies about them, assassinating the person’s character, and/or painting them as mentally ill.

Dr.Charles Nemeroff, a psychopharmacologist and former head of Emory’s Dept. of Psychiatry who is mentioned in numerous reliable media source’s articles and investigative reports as having committed research and medical journal publishing fraud and that he was in bed with major pharmaceutical companies and getting promotional funding from them while employed by (and with the blessing of) Emory. He also falsified safety claims on Abilify stating it was safe when in fact it was causing Tardive Dyskinesia.

Nemeroff himself conducted some of those psychiatric evaluations on whistleblowers, (proving my point that Emory does have unofficial hatchet-men to do their dirty work for them in order to cover up their corrupt practices).

After leaving Emory and Georgia in disgrace, Dr. Nemeroff went on to become employed at University of Miami and officials there seemed strangely unconcerned about hiring somebody who had committed illegal and unethical acts in the process of his career activities.

Apparently the reason for this nonchalance according to the Chronical for Higher Learning was that NIMH Director Thomas Insel owed Nemeroff for a favor he’d done for him when he’d lost his position and put in a word for him with Pascal Goldschmidt, MD, UM’s Medical School Dean, convincing him that the benefits in the man’s skill at fundraising outweighed the risk he carried. Meanwhile Insel quietly revised the NIMH conflict-of-interest regulations, and Nemeroff sits on two advisory boards that decide or influence which scientists get research funding.

Nemeroff’s current department is back in the Medicaid business overseeing a multi-million dollar contract which oversees 900 providers 30 hospitals, and 100 CMHCs (Community Mental Health Centers) trusting him with state funding again even after his HHS/CMS violations here in Georgia. While Nemeroff sits on easy street the whistleblower has spent years of his life fending off numerous frivolous legal challenges thrown at him by a judge who was in Emory’s pocket, unfairly placing a gag order on him while not evenly applying the same constraints on Emory whose various officials have given a number of media interviews about theirs and Nemeroff’s side of the story.

Emory holds a tremendous amount of power in Atlanta and throughout the state of Georgia so it’s no wonder that its top-level executives feel they’re above the law. It’s bad enough that they feel free to tamper with research and NIH/NIMH funding and go after people to cover up the skeletons in their closet, but the epitome of low-down and dirty that they’d resort to such tactics against patients! To attack a patient may prove to be their undoing. That is a bridge too far. Here’s one porcupine they’d best leave alone. I’m sure this is just the tip of the iceberg.

 

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