Yesterday I received a letter from Emory Healthcare notifying me that there had been a security breach affecting patients’ electronuc medical records and that I was one of the people affected. Two years ago after defamatory statements had been written … Continue reading
It’s been 2 years now since that fateful day I entered the ER of Emory Healthcare. Back then almost nobody else was speaking out publicly in blogs and/or video and although it was common knowledge within the chronic illness community that these kind of things happens, mostly it was only discussed in groups and on forums with little exposure to the open internet. Search yielded almost no trace of the undercurrent that was about to explode onto the scene as patients quietly compared notes. It seemed each patient this happened to was contained in their own little bubble of isolation and only 1 organization existed at that time to advocate on behalf of patients whom medical corporations targetted.
The mainstream media didn’t mention the thousands of cases that were routinely brushed under the rug and when approached tiptoed around the issue as though their bread was buttered on the wrong side of the law, so they dared not speak of it. That 1 organization that existed at that time was overrun with requests for help, not only from US citizens but from patients all over the world and its director was in the process of putting it on hold until she could complete a book on the subject.
Nobody else was really organizing around this insidious but deadly problem inextricably woven into the very fabric of our society, so it became my mission to get the ball rolling and start a concerted effort to change the law.
For those of you just now subscribing to my blog and/or coming across it for the first time, a short re-cap. I began having new symptoms outside of my already diagnosed chronic illnesses that progressed very quickly over the period of about 1 year in 2014-2015. They became so severe that I ended up hospitalized for 11 days because of severe near syncopal episodes, blood pressure wildly erratic, insatiable thirst and the taste of salt in my mouth, lower GI spasticity, severe myoclonus, other abberant movements, weakness, spasticity, and difficulty walking.
While in that particular hospital I was treated for Dysautonomia (a dysregulated autonomic nervous system) a condition which likely may have been causing some or even all of those symptoms. One of the doctors there sat down at my bedside one day during rounds and talked with me about my dysregulated blood pressure and the other symptoms I was having and about treating it with IV saline. I had no idea at the time that that was an accepted treatment for dysautonomia. I had not yet read about it, but he explained that he had tried this for a few days when I first came in to test out if it would get the symptoms under control and found that I started to stabilize.
He went on to say that there weren’t alot of options to treat this autonomic dysfunction but that he’d noticed when he took me off the saline that my symptoms got worse, so he would like to put me on it continuously to see if I would stabilize again. I did notice that I had started feeling better for a few days but had no idea why. When he explained this to me it made sense and so I agreed to it.
I was grateful to have something that worked. He put me back on it and wrote the order for it to be continuous, and sure enough, after about 4 more days I again began to stabilize. I was able to eat again, the thirst subsided, I was able to go to the bathroom more regularly, and the near syncope and dysregulated blood pressure became more stable again. I figured if that’s what it took to keep me stable, then so be it.
What I didn’t know is that this doctor failed to document what he’d said to me verbally and although he documented the order for continuous IV saline infusion, he did not state the reason nor the detailed rationale that he’d given me that he had tried this (what they call in medicine a “therapeutic probe”, something doctors sometimes do as a clinical diagnostic tool in which a positive response to a given treatment indicates that their diagnostic hypothesis was correct).
At the time my muscular symptoms were presenting like ALS so the admitting neurologist (another doctor) began the process of looking into that as a possible diagnosis. By the time I was discharged they were still unable to diagnose what was wrong but the admitting neurologisy suggested I go to some major medical center such as Mayo Clinic’s movement disorder clinic, since the system where I had been going for healthcare previously had not been aggressively routing me to appropriate referrals and I was rapidly becoming more and more disabled.
She told me that their facility (a smaller system than where I was getting all my outpatient care) was not advanced enough to do the more involved testing that would be needed to find out exactly what was wrong. I was discharged on a Saturday, the saline order was not written for home health as I was told it would be by one of the attendings, and just a few days later I ended up back in the same shape as when I went in. I awoke one morning feeling intensely faint even lying flat on my back, and no matter how long I waited for it to pass it would not.
I ended up back in the ER, this time at the hospital where all of my outpatient doctors worked, but instead of stepping up and expediting my care the facility (unbenownst to me) began building a malicious case to discredit me in my medical records to cover up the mismanagement of my condition(s) now that they were aware of my rapidly declining condition.
During that ER visit I suffered numerous human rights violations and nearing the end of my visit was physically assaulted and interrogated by an on-call neurologist who posited that there was nothing neurologically wrong (because I had not yet been given a diagnosis while I had been hospitalized at the other hospital, taking bits and pieces of the incomplete record from there out of context).
Soon it became clear that he’d been called in by administration to shake me down and to try to debunk me, not only the new illness(s) yet undiagnosed, but he pointedly questioned even my established diagnoses.
This was no legitimate neuro exam and as it progressed from undue roughness to an outright beating I was 100% sure that this was outside the standard of care and that he had not come to help me, but to maliciously sabotage me. In his mind I was wasting people’s time and resources and he was bound and determined to make me pay.
After he left the room he had his resident come in alone and slam her butt down on my foot (this is a very unethical practice that is done to find out whether a patient is faking). Not only was it reckless but misplaced given that although I was weak, I had never claimed to be paralyzed nor unable to feel, so it did hurt.
To make a long story as short as I can; the sadistic neurologist who’d abused me put libelous statements into my medical records and incited his resident and others to do the same, it got passed on from doctor to doctor, ruined the good working relationship I had with two other doctors I’d seen for years.
The corporation that employed these people refused to do anything to correct the records, discipline those who acted improperly, nor to protect me and my record as I had requested from any further damage.
My case became highly political and administration itself went after me using numerous people who worked for them to carry out their corrupt agenda. I was mercilessly harrassed by letter and even got a threatening phone call, my care suffered more and more because of the firestorm of loose gossip flying around the facility about me, administration admitted they’d been reading this blog and when I wouldn’t take all this lying down they got their Chief Medical Officer to send me a letter kicking me out. (Note that this is the largest and most powerful healthcare system in Georgia).
The libel in my medical records continues to hurt my ability to obtain unbiased medical care long after I’m gone from their clinics, and thus my health continues to decline.
I’d filed all pertinent grievance procedures and went through every proper channel, but to no avail. This corrupt facility got off at every turn.
Why? Well here’s the answer in a nutshell;
1) Regulators base their investigation solely on what’s written in the record regardless of whether it’s accurate, inaccurate, or blatant lies!
2) Apparently the law has a loophole in it which says basically that a doctor or facility can get away with libel in a patient’s medical record as long as the facility’s administration answers the complaint by stating that they “find the record as written to be true and correct.” They aren’t even required to have personal knowledge of the validity or invalidity of the defamatory statements in question. They can merely say it’s true with no proof whatsoever.
The above clause in currently law directly conflicts with federal anti-discrimination laws and I argue is therefore unconstitutional. Constitutional law was supposed to override administrative policy, but it was not enforced.
In addition; the facility receives federal funding and therefore cannot legally retaliate against by refusing service to a patient for making an official grievance, yet that is exactly what they did to me.
These two key points are what regulatory agencies ignored, so it became clear to me that the law must be made much clearer than it currently is worded, and that this particular type of abuse; gaslighting and blacklisting of patients must be given it’s own designation as an unequivocal hate crime.
I have set about deeply researching this topic to find out just how common this is and a petition was written with my story and my proposed legislation which would fill the current loopholes, and now over the past few years patients who have been abused in these ways are coming out in droves!
To read, sign, and add your story to our petition please click here. Your signature and story will be auto-forwared to Secretary Sylvia Burwell of Health and Human Services Committee (US Congress). Please be as specific as you can describing exactly what happened to you, state when it happened approximately (don’t just say something vague such as “This happened to me too” or “I have been abused by doctors” or “I have been blacklisted”, tell what was said, direct quotes if possible, and what was done if there was abuse and/or medical neglect. This way statistics can be compiled about specific types of human rights violations. We need to band together as a community and continue to hold those in positions of power accountable, to insist that state and federal regulators regulate, and that these inhumane and destructive practices are brought to an end.
This is my Christmas wish; not only for myself, but for all patients that similar atrocites have happened to, and those who may become victims of this type of abuse in the future. We must change and strengthen our civil rights laws!
I’ll be participating in #Blogmas this year. Over the next few weeks I will feature 1 patient’s horrendous story on this blog every week to raise awareness of these abusive practices in medicine.
Please share and leave a comment here on each corresponding blog entry so that we can continue to raise awareness and push our public officials/legislators to enact concrete solutions now! I hope to live to see the day when not one more patient is gaslighted, blacklisted, bullied, discriminated against nor abused by the medical establishment.
What better gift is there than to make it possible for patients to obtain the respectful and compassionate care they need for their medical conditions without fear, and to give them back their dignity.
This is my Christmas wish!
Attribution given; <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>
I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.
I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.
In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.
It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.
In another dream I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.
Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.
In addition to the element of danger in these dreams there is alot of uncertainty.
All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,
and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.
This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.
Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.
1) Wear a medical alert bracelet;
Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.
If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .
2) Carry a medical alert card at all times;
You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.
3) Carry an official diagnosis document at all times;
this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.
Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.
4) Bring a buddy with you to the hospital;
If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.
It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.
This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.
If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.
One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).
Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.
If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.
Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.
Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.
In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.
How You Can Help Now;
You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.
Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.
US Dept. of Health & Human Services
Attn: Secretary Sylvia Burwell
200 Independence Ave., S.W.
Washington, D.C 20201
Phone (Toll Free); 1 (877) 696-6775
Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).
Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even more so because this population is at a greater disadvantage than most other minority groups)
And now for a good protest song;
This Land Is Our Land
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!