Imagine the worst flu you have ever had. Now, imagine living with that type of pain day in and day out with no end or relief in sight. Now, imagine yourself in the doctor’s office, fluorescent lights beaming down on you as you shiver in a thin hospital gown.

 

Your doctor, a person you’ve known and trusted for years (or maybe someone who has never met you before now) is glaring at you or mocking you, rolling their eyes, and/or flat-out telling you that you are lying about your pain, that you’re an attention-seeking drug addict, and that he plans to ‘warn’ all other doctors who request your medical records and read about you so there is no way you can get treatment anywhere.

 

How would you feel?

 

Confused? Traumatized? Betrayed?

 

Think it can’t happen to you? Think again.

 

Millions of vulnerable patients with chronic, specialized, and poorly understood illnesses such as fibromyalgia, chronic fatigue syndrome, and chronic regional pain syndrome go through this every single day.

 

This is our reality, and we MUST do something to stop it!

 

A brief excerpt from the modern version of the Hippocratic Oath:

 

“I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.”

 

Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

 

A Serious Conflict of Interest

 

Modern medicine has become increasingly impersonal and corporation-driven, rather than the consumer-driven human service it was originally intended to be.

 

In recent years, quality of patient care has decreased while volume and profit have become priority #1. This shift in focus has created a hostile environment and culture of bullying beginning with administrators to senior doctors, to residents, and on down to patients.

 

Even in medical school, future doctors are groomed to perpetuate this cycle of abuse, and when they go on to start their own practices, their anger and frustration are often taken out on the very people they are supposed to be there to help; their patients.

 

Placed in a God-like position with the power and responsibility for life and death, doctors are automatically given (by society and by the institutions that employ them) an incredible amount of leeway and immunity when they make mistakes and reckless decisions.

 

For some doctors, this leeway can lead to intentional bullying of patients in their charge because these doctors, who already have egotistical personalities, are given the message that this is acceptable behavior by those whose job it is to ensure standard of care. That not only will they be allowed to get away with it, but such behavior is reinforced by their superiors and by external agencies by virtue of taking a hands-off approach when such incidents come to light.

 

A doctor’s “medical opinion” is often assumed to be fact, not only by other doctors and administrators, but by state and federal regulatory agencies. This creates a false assumption of legitimacy. Herein lies the crux of the problem.

 

Currently, most, if not all, regulatory bodies base their investigation of official patient grievances solely on what is written in a patient’s chart by the doctors under investigation and their co-workers.

 

This is a clear-cut conflict of interest. Medical systems are designed to protect the interests of the system, not the interests of the patient. Therefore, there is considerable pressure on all employees to conform and close ranks even if that means lying to protect their own and conforming a patient’s chart to fit a group-worked story.

 

Vulnerable Chronic Illness Patients Bullied and Dismissed

 

On December 3, 2015, Pippit Carlington, a 55-year-old patient with several established chronic illnesses and also on the autism spectrum, presented at the ER with severe near syncope, lower GI spasticity, and systemic weakness just 4 days after having been released from another area hospital where she’d been admitted for 11 days for the same symptoms.

 

Given no food for 9 hours, only a small cup of water and an IV jammed roughly into her arm, but no saline fluids given even after treating professionals had been informed this patient was dysautonomic (a condition by which the nervous system does not work as it should), and given none of her prescribed medication, she was allowed to suffer in agony hour upon hour, given nothing but Valium by ER staff for her severe distress, treated cruelly and callously, and toyed with by a glib mid-level hospitalist and a neurology resident.

 

Based on incomplete records from that prior hospitalization, the neurologist who was on call that evening subjected her to both physical and psychological abuse disguised as a neurological exam; asked interrogative, pointed, and leading questions, beat her with his hammer, then jumped to the conclusion that because the first level of testing was non-diagnostic that what was wrong with the patient must be psychological.

 

Ms. Carlington rationally informed him that he was wrong, that she knew her own body, and that there existed in her record 3 well-documented sleep studies which clearly indicated problems in the central nervous system, evidence that there was, in fact, something significantly neurologically wrong.

 

She calmly pointed out to him that since many of her symptoms presented during sleep, they were not under volitional control, she could not have imagined these things, nor made them up, that this diagnostic process had been long and horrible, and that she had nothing to gain by doing what he was proposing.

 

This well-reasoned explanation and the fact that he was stumped only angered him further, and as she implored him not to put anything of what he’d said to her in her record because she had long-established doctor/patient relationships at this facility and still needed to see specialists going forward.

 

He stated, “They called me in for my opinion, and I have to give it. I don’t know what I will write.”

 

Just a few minutes after he, his resident, and the ER doctor left the room, the resident re-entered the room and slammed her butt down on the patient’s left foot (the weaker one). She pretended it was an accident, although there was a chair in plain view for her to sit in. Only after Ms. Carlington cried out in pain did this medical resident get up and sit in the chair on the other side of the bed.

 

Exhausted and in shock, Pippit Carlington called in the ER doctor, but not knowing whether she could trust her, did not tell her what the female resident had just done, but instead expressed to her that this whole incident of maltreatment was incredibly sad, and that she’d promised to make this right (the fact that the corporation and its clinics had let her illness go on so long before acting); not make it worse.

 

The ER doctor, seemingly apologetic, stated she felt Ms. Carlington was an honest person, but that she herself was “not a neurologist” as if to defer to his judgment. (Neither she nor the resident had intervened during the abusive neuro exam although the ER doctor looked wide-eyed as it progressed to a beating).

 

One week later, once the initial shock had worn off, and she’d received a copy of her ER record, Ms. Carlington contacted the ER doctor by email to tell her what the resident had done while she (the ER doctor) was out of the room, and recapped what the on-call neurologist had done to her while she was still in her room, bullet-pointing the ways in which he violated the Hippocratic Oath, and asking her if she had filed a complaint on her behalf (even if anonymously).

 

Ms. Carlington once again expressed concern that this could destroy her reputation and access to care if the ER doctor did not step up and report it; that it was her duty as a doctor under the Hippocratic Oath and on whose watch this atrocity took place to report it.

 

This was the ER doctor’s response;

 

“Ms. Carlington,

I am very sorry for your experience in the emergency department last week. I have been informed that the hospital is investigating your concerns, and the patient advocacy group will be getting back with you shortly.”

 

(Name and facility withheld)

 

In the months that followed, Ms. Carlington’s worst fears were confirmed as the libel in her records spread like wildfire throughout the system alarming every one of her doctors and casting a dark shadow of doubt upon her very character, as one by one doctors she thought she had a solid relationship with turned against her, leaving her without protection, support, and back-up even as she pleaded with them not to forsake her.

 

During the year in which Ms. Carlington was stonewalled and targeted for abuse, not only were doctors carrying out these acts, but she received nasty and threatening phone calls from a nurse and those the hospital considered internal “advocates,” representatives of their “Department of Patient Relations.” 

 

Supervisors would not return her calls, and she received veiled threats in letters sent by members of Administration. At one point, she was refused care even when she had an acute infection that needed swift medical attention and was nastily told by a nurse on the phone (who wasn’t even in the same department where she was seeking an appointment) to “Go somewhere else”, then hung up on, leaving Pippit out in the cold with nowhere to go.

 

By the time one new neurologist (who’d at first bought into the rumors about the patient) obtained new information, reversed her position and began working on her behalf to set the record straight with independent evaluations, it was already too late.

 

Administration was hell-bent on making the false statements stick, and ultimately Ms. Carlington received a letter from the facility’s Chief Medical Officer kicking her out of all their clinics statewide. (A copy of this letter can be viewed at www.PatientsRightsAdvocate.com )

 

At her last appointment with a neurologist, in the system’s Sleep Medicine Dept., she had been seeing for her myoclonus, she and her personal assistant were turned away, told by the office manager that “Patient relations has been calling all morning”, and saying she’d been “globally terminated”, and that they were forbidden to see her. Soon all of her doctors, including her main neurologist, were commanded to terminate her care just days before she was due to travel to Cleveland Clinic and the University of Florida Movement Disorder Clinic.

 

This sabotaged Ms. Carlington’s ability to get there, and she, therefore, missed these vital consults, because top brass refused to allow her two remaining doctors to finish facilitating these referrals.

 

Still sick, and now traumatized, through tears and very afraid, Pippit Carlington asked several employees to contact their Union representative and tell them they were being used by the corporation to refuse services to a patient in active medical need.

 

It is important to note that this healthcare corporation holds itself out as a non-profit organization. Therefore, it cannot legally refuse services to a patient otherwise eligible, as it receives federal funding through Medicare/Medicaid, as well as NIH research funds.

 

Her expulsion directly violates federal civil rights laws, all of which state that it is a violation to retaliate against someone for filing a grievance.

The Chief Medical Officer, in her letter to Ms. Carlington, directly stated the reason she was being refused service was “because we are unable to meet your expectations”.

 

This particular corporation spends millions, possibly billions of dollars per year on patient satisfaction surveys. If a patient can be personally attacked for exercising their legal rights to give honest feedback about how they are being treated, then these surveys are clearly disingenuous, and the corporation is not truly interested in delivering ethical, caring, and respectful healthcare to its patients.

 

This is a prime example of how bullying becomes institutional. This is not merely a story of one doctor-gone-bad, but of an entire system with a vested interest and a pattern of allowing and then covering up the malfeasances of its doctors and staff.

 

3 years later, Pippit still waits for justice and for the referrals to advanced specialists with the knowledge, compassion, and the will to elucidate her more recent condition(s), which remain as of yet undiagnosed. She continues to encounter problems in obtaining medical back-up in her home state due to the defamatory medical records. The inability to obtain the care she needs could relegate her to a premature death.

 

The sad thing is, Pippit’s story is not an isolated incident, and the particular form of abuse and discrimination she was subjected to, not as rare as one might think. It is one of millions of horror stories of institutional bullying of patients with chronic illness/conditions. For such patients, there is no starting over as long as lies remain in the medical record masquerading as the truth.

 

That is why we, the patients, have created this petition; to shed light on the widespread dismissal, bullying, and blacklisting which has become commonplace and all too readily accepted within the medical system so that patients with chronic conditions are able to receive the respect and care we all need and deserve.

 

We with chronic illness/disabilities/conditions are at the bottom of the food chain. We are dismissed, devalued, minimized, ignored, brushed off, disbelieved, and discredited, and our special needs not accommodated.

 

When we speak up to ask for what we need from our doctors, all too often our requests are met with irritation and even outright anger and vengefulness merely because we can’t overcome and get well; because our very existence is considered a bother and an inconvenience.

 

We clog the gears of this big and impersonal money-making machine that modern medicine has become.

 

The Hate Crime You’ve Never Heard About

 

If any doctor denied care to, screamed at, laughed at, or threatened people of color, LGBT individuals, or those whose religious beliefs differed from his own, the law would not hesitate to call such behavior a hate crime, and the offending doctors' license to practice medicine would be swiftly removed.

 

However, those of us who are on the autism spectrum, who have other learning impairments, and/or struggle with chronic conditions medical professionals cannot easily diagnose and prescribe for, are often treated in the exact same ways described above, with no action taken to stop nor prevent it!

 

Those of us with chronic illness are especially vulnerable to abuse, neglect, exploitation, and discrimination. Existing laws do not adequately protect us, and thus many attorneys are reluctant to take our cases when we fall victim to these acts.

 

Blacklisted With the Stroke of a Pen

 

One of the most pernicious ways those with chronic illness are discriminated against is in our medical records. While the advent of electronic records is convenient and can streamline the process of informing all of a patients’ specialists of their medical history, the potential for abuse in this area is very high.

 

Because of the large number of people who are allowed to view and make changes to this information, it poses great risk to patient privacy that even HIPPA does not address.

 

As a result of the way in which electronic records are managed, your “private” communications with your doctor are now anything but. Doctor/patient privilege no longer exists.

 

When you share a sensitive topic with your doctor, nurse, or appointment secretary, this information often ends up in your medical record for hundreds of prying eyes to see.

 

This means that all it takes is for one healthcare professional to misunderstand or misconstrue what you’ve said, dislike how you said it, or form a far-fetched theory painting you in a bad light, and your health and even your life can be placed in jeopardy.

 

“Dramatic. Hysterical. Functional. Drug seeker. Paranoid. Mentally unstable. Factitious. Hypochondriac. Fabricator.”

 

When an annoyed and harried healthcare professional uses verbiage like this in a patient’s chart, those defaming words follow the patient wherever he or she goes, essentially blacklisting the person with the stroke of a pen.

 

As a result, many patients whose charts contain this type of coded language are treated poorly because the legitimacy of their illness is, from that moment forward, constantly called into question. This is language that gets repeated over and over from doctor to doctor, facility to facility.

 

This practice virtually guarantees that no matter where the patient seeks treatment, he or she will run into more disbelief, more dismissal, and more traumatic bullying because of a personal opinion written by one doctor on a patient’s chart (and then repeated and accepted by many to come).

 

When Personal “Professional” Opinion Is Used as a Weapon

When unproven and discrediting “dog whistle” statements are made in a patient’s chart, especially those suggesting that a patient’s condition isn’t real, that is libel and must be treated as such even if the person writing it is a doctor, and it must be removed… no ifs, ands, or buts.

In order to refuse to amend a patient’s medical records, the current system requires only that a facility state that, “This is true and correct”. This is unacceptable, as a corporation or medical practice cannot realistically be relied upon to police itself.

This is especially important if the defamatory statements in question are subjective and opinion-based, such as: “Lousy attitude, non-compliant, rude and argumentative, paranoid, shows inappropriate judgment, lack of eye contact suggests lying, appears to be fabricating, may be feigning,” etc. or when psychiatric terms which hint at charges of defects of character or moral turpitude are recklessly bandied about without proof nor official assessment done by those officially qualified to diagnose mental conditions.

 

As People With Chronic Illness, We Need Your Help

Expressions of momentary anger, frustration, fear, or sadness can wind up in a patient’s chart, effectively branding him or her as a “problem patient” for life. In addition to this, hundreds of thousands of patients with chronic illnesses such as fibromyalgia, chronic fatigue syndrome, lupus, and rheumatoid arthritis are outright bullied by the doctors who are supposed to be taking care of them and looking out for their health and safety!

 

* We ask that institutional bullying within healthcare settings specifically be given its own designation and stiff penalties complete with swift and unequivocal modes of enforcement in the interest of protecting medical patients as a highly vulnerable class of people especially vulnerable to discrimination, abuse, and neglect. All gray areas in existing laws which hinder such protection to patients must be amended and conflicting clauses stricken.
 

* All medical professionals need to be held to their responsibility to help patients, and when they depart from this duty and act against their patients must be reined in (penalties which will include heavy fines and/or permanent loss of license).
 

* We ask that facilities that support this type of destructive behavior against patients be given only 30 days to remove all such material from a patient’s record and to prove that they are making all necessary reparations to patients affected by such bullying behavior (including, but not limited to, helping the patient obtain testing and treatment, facilitating and paying expenses not covered by patient’s insurance for any outside referrals/consults, and an official letter admitting the wrong-doing, and outlining just how they intend to correct the situation and make reparations. Failure to meet these requirements must be met with suspension of the facility until such time as they fully comply (and that may be indefinitely if the facility refuses or states they will but doesn’t complete the process, and/or if additional complaints/violations surface).
 

* We request that US Congress Committee on Health and Human Services headed by Secretary Alex Azar hold public hearings on this topic and change/amend laws, as the current system is broken and does not provide adequate justice, redress, and reparations, nor preventions.
 

* We ask that under amended law any and all unproven statements, especially those which tend to discredit a patient, be removed and that a doctor’s “opinion” not be considered sufficient proof to defend such libelous statements as fact, nor their employer’s assertion that these statements are “true and correct”.
 

* We further ask that it be made very clear in Defamation statutes, Civil Rights statutes, and in Hate Crimes statutes that this type of speech not be protected (as it is a form of hate speech against a class of people to call the legitimacy of one’s medical condition(s) and patients’ character into question) and that when included in a patient’s record shall open up the swearer(s) and their employer to civil litigation including substantial punitive damages and recovery for pain and suffering; (emotional, physical, loss of wages, etc). Subcontractors would not be exempt.
 

* Specific penalties must be written into law removing any wiggle room regulatory agencies currently have at their discretion to choose not to enforce.
 

* We ask that a designated person or agency be given the power to override and mandate that grievance dismissals made by existing regulators be overturned and that patients be provided the right to go straight to this person or agency in lieu of utilizing the time-consuming and often fruitless current regulatory agencies.
    

Institutional bullying has been swept under the rug for far too long. It is now up to us to stand up and say, “No more!”

Medical professionals do not have the right to play God or use their opinion to interfere with the care, respect, and dignity of their patients. No human being should have that kind of power over another.

If you have a chronic illness and have been bullied by a doctor/healthcare professional, if you know someone who has gone through this, if you work in the medical profession, or even if this information is brand new to you, and you are shocked to discover that anything like this can and does happen in America, sign this petition!

Why should you personally care and take action even if you have not had this experience? (The operational phrase is “yet”).

 

Because we all age, and sooner or later illness happens to all of us.

 

Because the world we build today is the same one we, our children, and our children’s children will have to live in tomorrow.

 

This could happen to you, your mother, you wife, husband, or child.

 

We’re not going to take this lying down, and neither should you.

 

Become a part of the solution.

Sign this petition today to hold medical professionals accountable for bullying and defamation of those with chronic illness/conditions.

Where it says below "Reason for Signing" add your personal account of abuses you've suffered at the hands of members of the medical profession and be as specific as possible as to what was done to you and the result it had on your access to healthcare. This is important so that Congress can track the prevalence of specific types of abuse patients experience.

 

Encourage your friends to join the movement. Take a few moments right now to spread the word and encourage them to sign!

We strongly encourage you to call Secretary Azar at Phone Number: 
(202) 690-7000 and let him know you would like Congressional Hearings opened on this matter, both, written and live testimony from patients who have experienced these abuses/neglects.

You just might save a life.

 

 

 Photo of woman courtesy of Flickr/Marcus