Very Upset - Violation of Confidentiality

whiteraven

MyPTSD Pro
How does someone sending an email -regardless of the content- determine your fixability? Honest question. Because I’m not seeing the connection, except that you’re upset, so everything is rolled together in a giant tangled ball of anger and despair.

It is a cumulative thing - this has happened more times than I can count and it, along with everything else I'm dealing with, else these last few months, have demonstrated just how seriously f*cked up I am - and how it is not something anyone - including me - can do anything about.

Just hold off on paying, until you can get a new plan in place, or they simply discharge your debt in their own bankruptcy. (Although, more than likely, they’ll count patient debt as assets to be moved forward, there’s always the possibility that rather than a few months relief, it will be cancelled in total.

This won't happen. I'm not being difficult or negative intentionally; this is a very old debt, incurred because my then-primary made me to the ER when there was nothing wrong (said if I didn't, she wouldn't see me). There was literally nothing wrong - she sent me the day after I called her and I was having no acute symptoms. The hospital has told me there will be no forgiveness for this.

I kind of wonder if he was trying to get the DID removed from your chart? I don’t know of course. I remember a few years ago a doctor had added to my chart that I was depressed. I was told that the doctor who put it there had to remove it. Something about the way those electronic medical records worked. I’m sure it’s different everywhere. It’s just a thought.

No, it was never in this chart. It was in the notes from a prior neurologist (and I have no idea how he got the info except I think another primary told him, again, without my permission). But you do bring up a point. Apparently it's *somewhere* because he had access to it.

I would very much take a pause / gain distance where possible...

You are super attached to your kitties, yes? So I would focus on what all needs done to get them healthy -

Very. But they are not going to get better. :-( I understand what you're saying. I was gone all day today doing laundry. I try, but I feel the very same way when I come back to the crap.

Mind safety of who is first closest to you in space. Take care of their well being for the day, and yours. It is enough.

And I'm doing that as best I can.

I have a seizure disorder and am very picky about what I tell the epileptologist. I tell the truth....but I don't discuss mental health unless it is med related........then it gets always gets messy.....The more doctors know, the more they speculate.....maybe you're having pseudoseizures? Maybe your triggers are more stress related? Maybe I can see your alters on the MRI? And I always worry about Christian doctors who believe that demons can cause seizures.

I don't tell, either. I didn't tell him, I didn't tell my last one. I did tell a primary I had years ago, who said she would keep it out of the chart (and apparently lied about that).

I have changed neurologist twice.

Just twice? I have been seeing neurologists for almost 40 years and have changed multiple times.

request a copy of your medical record, p

Yeah, I did that.

Last thing, I do not allow anyone access to my medical records, not even family members, so that they can't give letters to my physicians.....which can be put in the file.

I never give access to my files to anyone.

What is so bad about having docs talk to each other about you? I get not wanting a doc to tell a random person all about your private stuff. But isn’t it safer if docs can communicate without making you the go between?

It's bad when they provide information to someone who isn't your doctor and was essentially fired.

once you can get a bit more emotional distance, I really would encourage you to report the HIPAA violation. You’re right, the regulatory bodies exist to protect doctors, but stuck in a bit of black and white thinking... because it’s not protect doctors = down with everyone else. It’s to protect doctors, AND to protect patients, AND the field of medicine, itself. Link Removed

Except I have seen multiple cases where it worked against the patient. Like...when I saw a psychiatrist who gave my DID diagnosis directly to an employer after she had been explicit written instructions not to do so (yeah, I was let go after that).

I have filed a HIPAA complaint before for someone else. I'm just not sure I have the energy to deal with all of that.

A doctor that hasn’t had anything to do with @whiteraven in over 5 years (or 5 minutes, if they’ve been fired from their care team) IS -at best- a random person, and at worst? Someone who would not only not be given permission to know, but would be actively blocked/denied access. Much like my exHusband has zero right to my personal and confidential info, even all of the information he had legal right to access when we were married, the moment we got divorced.

Thank you, @Friday.
 

Ronin

MyPTSD Pro
A couple of things come to mind...

What helps you recenter to thinking of it as an isolated issue - just this one incident, and sorting it -

Not all that ever went wrong in your life? What trims the link?

Because that is super traumaBrain thing, and PTSD thinking talking... but more realistic is it was one incident. With someone you had a history. And who broke the law.

But not that you are unfixable - or need fixing. You need help, assistance, clearly in greater measure and higher standard quality care than you've been getting...

But all that implies is others are failing *you*, not that you are a failure.

Other thoughts, how sure are you information was directly passed, verbal / direct access to your (old) files?

As opposed to files wrongly transfered / mis-transfered / mislabeled addressee and who is entitled to handle let alone view them / and similar errors that, while none of them should happen, don't mean people directly sharing private medical info behind your back.

As to reporting - there were also cases it worked well. You won't know until you try.

And if you are written denial or alike, you will have a proof of negligence / abuse / else, - in writing, even. - which is always useful to have, more than reporting maltreatment as just a pt's word.

So I would still encourage reporting it.

Or if you don't feel like going into your incident, still the basics of what that doc does wrong - as if they do badly, likely not just to you, and multi patients complaints have power.

Thirdly to that bit - anyone legal that would pick up your case? Social services? Claims assistance services? I would think of getting other people helping out with claims, if communication with authorities handling this is difficult.

As to the DID dx on file it shouldn't be, you can either argue it as an outdated one, demand re-labelling to something less locally stigmatizing or favorable to whoever you're applying... or cause bit of a storm over (very real) discrimination to you for already stigmatized diagnosis.

Just have even that claim professionally handled & worded, so it's not a 'oh. Crazy woman screams at the sky.' And instead a 'patient requiring way deeper care - that you guys altogether totally neglected and didn't provide - was also abused and lost income... because of your giant cockup.'

But fight back. Even on that one.

0.02. Will have more thoughts in a bit.
 

whiteraven

MyPTSD Pro
Thank you for your thoughts, @Ronin!

What helps you recenter to thinking of it as an isolated issue - just this one incident, and sorting it -

I am terrible at this. I have trouble seeing until after. Always.

But not that you are unfixable - or need fixing. You need help, assistance, clearly in greater measure and higher standard quality care than you've been getting...

I think I've dealt with so much of this, repeatedly, that I have come to the conclusion that it's not them, it's me. Even with documentation that reminds me it's not all in my head, it doesn't matter, because it happens over and over. I seldom get good care. Even with the records I just obtained - there was an incident years ago when I was treated for a UTI by an urgent care and went back to my doc for follow-up because I was then having dizziness, some breathing issues, and malaise. She said, "you know, all those symptoms could be from your depression." I demanded a chest x-ray, but waited to have it because I must be wrong, you know. I had pneumonia. All that is documented in the record I got.

But all that implies is others are failing *you*, not that you are a failure.

So what does it say about me that I am repeatedly "failed" by people who are supposed to be taking care of me?

how sure are you information was directly passed, verbal / direct access to your (old) files?

I am sure he sent the info to a doctor I haven't seen in years. I know that because I sent him a message and he said he did. Oops. So sorry. ?

As opposed to files wrongly transfered / mis-transfered / mislabeled addressee and who is entitled to handle let alone view them / and similar errors that, while none of them should happen, don't mean people directly sharing private medical info behind your back.

I get what you're saying, but he did. Do I think he did it maliciously? No. But he did share it in a way that indicated he wanted to pass along the info without putting it directly in my chart (even though the letter now is in my chart).

'oh. Crazy woman screams at the sky.'

I am treated like this, even when asking legitimate medical questions, long ago. I trained as a nurse and have learned over the years that doctors do not want questions for clarification.

But fight back.

I think I'm done fighting.
 

Friday

Moderator
This won't happen. I'm not being difficult or negative intentionally; this is a very old debt, incurred because my then-primary made me to the ER when there was nothing wrong (said if I didn't, she wouldn't see me). There was literally nothing wrong - she sent me the day after I called her and I was having no acute symptoms. The hospital has told me there will be no forgiveness for this.
I hear yah... I was millions in medical debt for several years when my kid got sick, and then for the past decade, every cold/flu season has put us about 10k-25k deeper -or right smack dab back in, after clearing the last round- medical debt (because people don’t care about getting other people sick... until just recently :bored: ) It’s a total pain in the ass to deal with. And a person is lucky as hell if they can afford to take the hit on their credit report, (and stick the whole mess in the “deal with this nonsense later” pile); &/or or have options for medical treatment that don’t care if you’re in good standing or in arrears on your debt.

So what does it say about me that I am repeatedly "failed" by people who are supposed to be taking care of me?
Borrowing ^^^this^^^ Q for a moment! :D

1. That you’re putting people up on pedestals.

I’m willing to bet you don’t do this -assigning people parental roles, instead of professional ones- across all areas in life... but only a few small niches?

It’s a super common trauma thing... and what kind of trauma tends to predict which niches/areas get confused/mixed up/transference-style-KABOOM’d.

- People with rape trauma &/or domestic violence? Tend towards dating-related-stuff being massively overrated. Before the rape or abusive relationship? They were like “everyone else” who didn’t take random passes personally, or as a giant-massive-whomping threat, much less a thing to be remembered. Yeah, people hit on them, shrug. No big deal. Nothing special about it... unless the interest is returned. :sneaky: Then it’s noteworthy, at least. If still not a big deal ...unless anything comes of it. But after the rape or relationship? Why does this always happen to THEM :arghh; losing their mind over the exact same things they used to not even notice, much less care about. Nor able to see that it’s still -just like before the trauma- not about them.

- People with childhood trauma? Tend to assign certain positions of authority god-like powers, looking at them like a child looks at a parent, rather than as an adult looks at a professional. With any difficulty suddenly rising to the level of parent failing a child, rather than being irritated with your mechanic or mailman. With all that goes along with a child being let down (blaming themselves, heartbreak, etc.)

These -and many many other- trends aren’t 100%. You’ll find individuals of all trauma types in every category, but the biggest groupings are in “Yeah. That makes sense.” clusters. Even the ones that crossover? Usually make perfect sense (like people who had absolutely loving families / no abuse AND medical trauma as kids, assigning doctors parental-roles; or putting EMS/Police up on a pedestal, because they reached hero / god-like status saving them from the car accident that landed them in the hospital for the next 2 years... or the reverse, with all EMS/Police, or doctors/nurses, being the terrifying root of all that’s evil. Neither case is true/accurate, it’s just the role trauma has cast them in.). Typically speaking, when you can break it down with someone? Whatever niche is being set apart will have these clear as day links, that make perfect sense, given the context.

2. That you have vast reservoirs of trust still at your disposal, even if they’re being held in reserve most of the time... or laid at the feet of people/situations that don’t rate it.
 
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Ronin

MyPTSD Pro
@whiteraven, A lot of both sympathies & emphasizing with you on that.

Seems we're in a bit of similar spot.

Okay, other ideas -

You said that says things about you, but nah. Very much still them, just because you are repeatedly faced with the same situation, does not make it your fault.

Just something that keeps happening again and again, sadly, but that's not being a magnet to it, much less a cause.

Kk, about your clarification that you're certain the doc did it on purpose.

Reminds me -

So where are the doctors that want & loove questions, and informed and educated and passionate patients?

Something I would (did) start the search with. As in sure some docs are imbeciles with a title. Some times it may be even whole location of them. Or the pool of specialists for the place so small they echo chamber each other and dysfunctional methods at best.

But there are always pardon the pun white ravens. People who see things differently, do them differently, and do them well.

So where & who they are where you are?

Second, you trained as a nurse - any contacts still in that world that could help you navigate it, recommend people, recommend how to communicate to have needs met?

Alternatively, can you meet your needs elsewhere?

(I friend a few nurses, coupla paramedics, heckuva lot combat medics, and quite a few med students who are just happy helping me in however many ways they can if the others can't. Can't get me to usual docs if you shot me. But the resources are still there... just elsewhere. )

Third, for the time's sake, can someone accompany you to meets? Just to make sure you are heard out and don't walk out empty handed or a kicked puppy, worse off than when you came in?

^^ Something I pull when really done, needing the care, not having it elsewhere, and knowing they wouldn't listen to me. It gives different impression even as sheer numbers / other basic social psych reasons.
 

whiteraven

MyPTSD Pro
A lot of both sympathies & emphasizing with you on that.
Seems we're in a bit of similar spot.

Thank you and I'm sorry...

just because you are repeatedly faced with the same situation, does not make it your fault.

Hm...ok. I don't believe you, but ok. ?

But there are always pardon the pun white ravens. People who see things differently, do them differently, and do them well.

This made me smile. :-)

any contacts still in that world that could help you navigate it, recommend people, recommend how to communicate to have needs met?

Nope. I left that world a long time ago and not on the best of terms. I have pretty much no one.

can someone accompany you to meets? Just to make sure you are heard out and don't walk out empty-handed or a kicked puppy, worse off than when you came in?

I think part of the issue with everything is that I really have no friends around here. Friends being folks who I can count on for things like this, someone who I can call on if need be. I just don't have that. All of the friends I have either live far away or have died. Even family is unreliable. My mom is 85 and still going strong; she is the most reliable person I have and, of course, there are limits to that. I am estranged from my sister (her doing, not mine) and my brother and his family only talk to me if I contact them first and it's beyond obvious that they are in touch out of obligation only.
 

TruthSeeker

MyPTSD Pro
It is a cumulative thing - this has happened more times than I can count and it, along with everything else I'm dealing with, else these last few months, have demonstrated just how seriously f*cked up I am - and how it is not something anyone - including me - can do anything about.



This won't happen. I'm not being difficult or negative intentionally; this is a very old debt, incurred because my then-primary made me to the ER when there was nothing wrong (said if I didn't, she wouldn't see me). There was literally nothing wrong - she sent me the day after I called her and I was having no acute symptoms. The hospital has told me there will be no forgiveness for this.



No, it was never in this chart. It was in the notes from a prior neurologist (and I have no idea how he got the info except I think another primary told him, again, without my permission). But you do bring up a point. Apparently it's *somewhere* because he had access to it.



Very. But they are not going to get better. :-( I understand what you're saying. I was gone all day today doing laundry. I try, but I feel the very same way when I come back to the crap.



And I'm doing that as best I can.



I don't tell, either. I didn't tell him, I didn't tell my last one. I did tell a primary I had years ago, who said she would keep it out of the chart (and apparently lied about that).



Just twice? I have been seeing neurologists for almost 40 years and have changed multiple times.



Yeah, I did that.



I never give access to my files to anyone.



It's bad when they provide information to someone who isn't your doctor and was essentially fired.



Except I have seen multiple cases where it worked against the patient. Like...when I saw a psychiatrist who gave my DID diagnosis directly to an employer after she had been explicit written instructions not to do so (yeah, I was let go after that).

I have filed a HIPAA complaint before for someone else. I'm just not sure I have the energy to deal with all of that.



Thank you, @Friday.


If you change therapists, ask him/her to bill it as PTSD with dissociative features-which covers DID/OSDD but doesn't scream the diagnosis in the paperwork.
 

whiteraven

MyPTSD Pro
If you change therapists, ask him/her to bill it as PTSD with dissociative features-which covers DID/OSDD but doesn't scream the diagnosis in the paperwork.

Yeah, that's a good idea. But this therapist doesn't take insurance and I have no plans to go elsewhere. Also, the issue with the diagnosis in the chart was a neurologist and someone not even treating for that.
 
Said that I was going to kill certain people.... Never even happened. I felt like like killing someone after I got copies of the reports.

^Sorry but had to read it twice. :hilarious: even though I know you didn't mean to be funny??

t is a cumulative thing - thi

^With everything that is currently going on and everything that has gone on in terms of doctors, put it away for a week or two, perhaps even more. Work on dealing with what you can do to right the ship, right now, today.

I feel your frustration and I understand how difficult the bureaucracy of it all must be. But you don't have to deal with it immediately so don't.

The hospital has told me there will be no forgiveness for this.

^Fair enough. Write a short letter requesting a reduction in repayments or a halt because you are currently unemployed due to covid related matters. Maybe they'll accept one or the other rather than nothing at all ever again?


I'm just not sure I have the energy to deal with all of that.

^When we're upset, distracted and despairing emotional and mental energy is always in short supply. Don't be surprised by this.

that I have come to the conclusion that it's not them, it's me.

^Maybe it is you. That still doesn't mean what they've done is ok.

you know, all those symptoms could be from your depression." I

^And they might have been attributed to depression, if you had it or could have had it. And let's face it, anyone can have depression. It's always difficult when unqualified people want to play mental health experts isn't it??

But, as you subsequently discovered the underlying medical cause was something different at that time. :rolleyes:

I cannot count how many times, as a mental person, a doctor has hedged their bets. When it's turned out to be a physical complaint and the application of a big dose of common sense as well as treatment, has been so much easier than treating any mental condition.

It's not unusual to have that happen.

So what does it say about me that I am repeatedly "failed" by people who are supposed to be taking care of me?

^What it says is that you're completely normal and just like everyone else.

And, what is says about them is they're (the medical people) are also normal, fallible, harried, perhaps at time's just plain wrong for no known reason.

Maybe what it also says about you is that right now you are very much alone (irl) with this and that is feeding into the helplessness you're experiencing.

I think you're right, it's a cumulative thing from almost every angle and you know it. So treat it like that.

Whilst your feelings are so raw from being beleaguered with so many other things, don't let them rule the roost. Step back & give yourself time to formulate a plan about what to do. Maybe it simply requires a well worded letter or like others here have suggested, a full on report. As @Ronin said, it's not life-threatening so prioritise whatever else is more important and put it on the to do list.
:hug:
 

Teamwork

MyPTSD Pro
Also have a seizure disorder and DID and finally learned to keep medical and psychological diagnosis separate. I have a great neurologist now who did not get my psychology in any of his thoughts and diagnosed me and medicated me properly. Sadly, I avoid hospital, ambulance calls if I have a seizure because they do have my psychology stuff and discredit a seizure as a pseudo seizure. some even act like you are faking it, pat you on the leg and send you home. I’ve been fortunate to not have had any hospital intervention for years since I learned it was better to just sleep it off, deal with the headache etc at home. I am a complex medical person and I get that, but we should also be treated with respect and sadly many times that does not happen. Sometimes I wish I knew if what we say is truly kept confidential?
 

TruthSeeker

MyPTSD Pro
Newer research results out through the Epilepsy Foundation (ours recognizes more now than ever before, pseudo-seizures. While they still don't classify them as epilepsy, they recognize that in many epileptics, it is a secondary diagnosis. The statistics show that upwards of 20% (and possibly more) of the people who have epilepsy, will go on to be diagnosed with at least once pseudoseizure in their life.
In my state, they started a distance memory course free through the society. In talking with the president of the Epilepsy Foundation in this state, she is quite.....sensitive to the needs of people with pseudo-seizures, and I was quite impressed. So I think that over time, maybe when I'm dead, with the rise in trauma, pseudo-seizures will be seen as more common place.

The medical (physical and emotional trauma) that epilepsy can create, sets many epileptics up for having pseudoseizures, too. The "not knowing when it will happen, driving and independence issues, bone breaking issues, and humiliation felt by many if it occurs in public is enough to create mental health issues. Add on the social trauma from being those of us who have been demonized, approached by cults or extreme Christians to be "saved" and we won't need meds anymore, been teased, lost friends, received unwanted pity, lost a job-or epilepsy helps to control job options-frustrating, become financial, socially, or family burden......

@Teamwork Your seizures are as real as anyone else's-just a different cause, and frankly, some of the same seizure triggers are true for both types. I think one day, epilepsy treatment may include both types......imagine that with our rising rate of trauma, the rising rate of pseudoseizures in epileptics, and the increase in identifying both types in people with epilepsy. Imagine a day, we won't have to hide our records and be so cautious who knows what, or have confidentiality concerns, or get a doctor who sees pseudo-seizures as a personal character flaw and epileptic seizures as the real deal.
 
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Justmehere

Moderator
What I really get from this is really needing someone in your corner, and someone that you thought was... feels like they were not. I just read something from my primary she said to insurance that she didn't say to me a year ago. It feels bad. The power differential comes out and it's so hard to trust. In this case, sounds like the doc did exactly what you asked they not do.

Have you been able to speak to the doc himself about it?

I'm super duper careful about a diagnosis I have ending up with certain doctors having it because it lessens quality of care. I get that there can be situations like that even with all the research in the world.

Your trust has been broken, but his actions may not have violated HIPAA.
Even in cases not involving traumatic injuries, HIPAA allows doctors to share patient information and records with other health care providers as necessary for their health and treatment. Can Doctors Share Patient Information Without Permission? - FindLaw
Does the HIPAA Privacy Rule permit a doctor, laboratory, or other health care provider to share patient health information for treatment purposes by fax, e-mail, or over the phone?
Answer:
Yes. The Privacy Rule allows covered health care providers to share protected health information for treatment purposes without patient authorization, as long as they use reasonable safeguards when doing so....

For example:
....
A physician may consult with another physician by e-mail about a patient’s condition.
482-Does HIPAA permit a health care provider to share information for treatment purposes by fax, e-mail, or over the phone
It might be unlikely that complaints about this would lead to serious action against him. I found this out the hard way when I found out a doc did something like this. However, I'd suggested filing a complaint anyhow, perhaps a letter to the clinic or more formal options, letting them get the message that you take your consent to disclosures very seriously. A complaint in writing that they have to answer to and explain will cause them to reconsider.

As far as you being unfixable? You are not broken! You went through hell, have a seizure disorder and need doctors that have your back and work with you as a team, up front, cards on the table, as you deal with two serious conditions - one medical and one metal (let's not get them confused docs!) Stinks this guy did this.
 
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