Very Upset - Violation of Confidentiality

whiteraven

MyPTSD Pro
I'm sorry. I don't know where to put this. I am livid and so upset. I have a neurologist I generally like(d) that was following me for a seizure disorder. Last appointment he suggested I have an EEG because I was having what seemed to be focal seizures. I declined because I couldn't afford it, but also because I have always been told and have read that focal seizures don't always show on an EEG. He also asked about my DID diagnosis, which he said he got off another doctor's chart (which wasn't supposed to be on there in the first place). He promised he wouldn't communicate it to anyone or put it in my chart.

I signed on today to send him a message about maybe taking meds for depression and found a copy of a letter he sent to a previous primary care - someone I saw over 5 years ago and left for reasons I'm not going to go into here. This neuro has my current primary's name and phone - I gave him both at that appointment. In the letter (which is very long), he says the epilepsy is a "presumptive" diagnosis and he questions its accuracy. I've been on meds and being treated for almost 40 years. He said nothing to me about this. I want to f*cking scream. He also tells the primary about my DID - says I told him I didn't want it in my chart, so he's sharing it in the letter. Did I say I want to scream???

I'm so mad. And I'm so scared. This was one doctor I actually trusted, as far as doctors go.
 

Ronin

MyPTSD Pro
I'd report it to a regulatory body when in a better place. Let them know he absolutely disrespects patient's wishes as well as comments on areas of health that are not his expertise nor his to comment on.

What can help you to get through the day, @whiteraven?

Some doctors just don't work out well, and I'm sorry he crushed your trust and questioned your lived lifelong experience like that as if having the right.
 

whiteraven

MyPTSD Pro
I'd report it to a regulatory body when in a better place. Let them know he absolutely disrespects patient's wishes as well as comments on areas of health that are not his expertise nor his to comment on.

Won't do any good. These are in place to protect the ones they are supposedly regulating. If you are an MD (or a psychologist), you can pretty much do as you please.

What can help you to get through the day, @whiteraven?

I don't know. Everything has been feeling like I'm at the end of things - both cats ill, my mom 85 and very depressed, no job and no prospects/interest in moving forward, much of life halted because of the virus - and this adds to that. I have NO hope that I will find someone who is trustworthy, because in the end, they are all cut out of the same product.

I'm not going back, I'm going to taper off the meds, and hope that my stupid T replies to my email.

I just feel done.

I also called a hospital where I have a bill to let them know I have no income and will need to delay the payment plan (I got an email from someone there the last time I called and she said this would absolutely not be a problem), talked to 3 different departments (including the one she told me to contact) and everybody tells me they can't do anything - that my next payment is due in June.

No matter what I do to try and work things out, no matter how much I play by the rules, I get kicked in the teeth.

Some doctors just don't work out well, and I'm sorry he crushed your trust and questioned your lived lifelong experience like that as if having the right.

I've not had one to work out well since I became an adult. Well...one. And he died.

I am not fixable. None of this is fixable. I am very clear about that now.
 

Friday

Moderator
I am not fixable. None of this is fixable. I am very clear about that now.
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.
I also called a hospital where I have a bill to let them know I have no income and will need to delay the payment plan (I got an email from someone there the last time I called and she said this would absolutely not be a problem), talked to 3 different departments (including the one she told me to contact) and everybody tells me they can't do anything - that my next payment is due in June
Yeah... because of the plague, hospital admin depts are frozen almost all the way across the board, so the things they can usually offer are temporarily on hold. They’ll come back online in a few months, once things settle. It is a ginormous clusterf*ck in hospital-land, right now, with all budgets out the window / some spent into the next decade others in surplus, half the necessary departments frozen, legal departments feeling like they woke up in Wonderland where everything is backwards, a helluva lot of hospitals are “restructuring” IE declaring bankruptcy & discharging all debts, in order to rename/rebrand & come back strong... crazy crazy crazy town in hospitals right now. In the meantime? 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.
 

Survivor3

MyPTSD Pro
I feel your pain @whiteraven. I've had docters that literally drove me mad. Lied in my reports and fabricated evidence. Diagnosed me with things i didnt suffer from. 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.
All i can say is don't let them f*ck your shit up. They're not worth it. Try to cancel the payments with your bank if you can't afford it. Best wishes to you S3.
 

piratelady

MyPTSD Pro
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.
 

Ronin

MyPTSD Pro
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 - and everything about them that still makes you happy and ever did so, for now.

Sorting out situations about medical, where not life threatening immediately, and mostly about logistical issues - like diagnoses, misdiagnoses, access, payment, perception - those all may wait. Will wait.

They are not an issue you need solved in a day.

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.

Different day can bring different challenges.
 

TruthSeeker

MyPTSD Pro
I'm sorry. I don't know where to put this. I am livid and so upset. I have a neurologist I generally like(d) that was following me for a seizure disorder. Last appointment he suggested I have an EEG because I was having what seemed to be focal seizures. I declined because I couldn't afford it, but also because I have always been told and have read that focal seizures don't always show on an EEG. He also asked about my DID diagnosis, which he said he got off another doctor's chart (which wasn't supposed to be on there in the first place). He promised he wouldn't communicate it to anyone or put it in my chart.

I signed on today to send him a message about maybe taking meds for depression and found a copy of a letter he sent to a previous primary care - someone I saw over 5 years ago and left for reasons I'm not going to go into here. This neuro has my current primary's name and phone - I gave him both at that appointment. In the letter (which is very long), he says the epilepsy is a "presumptive" diagnosis and he questions its accuracy. I've been on meds and being treated for almost 40 years. He said nothing to me about this. I want to f*cking scream. He also tells the primary about my DID - says I told him I didn't want it in my chart, so he's sharing it in the letter. Did I say I want to scream???

I'm so mad. And I'm so scared. This was one doctor I actually trusted, as far as doctors go.

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. So, in my over 60 years, I have changed neurologist twice. If you are in the States, request a copy of your medical record, pick through it, and find another doctor and hand them the records yourself.....without the DID info in it. If you are overseas, I don't know how records work-but if you have HIPPA-and you didn't authorize the information to go to this doctor, it has to be taken out of your file-your info....your privacy. 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.
 

RubyBlue

Policy Enforcement
Unpopular question probably but I’m genuinely curious (for everyone, not just OP):

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? I know I would forget stuff, not realize what’s relevant, may be too out of it to begin with. So of course I want all information available to everyone. That includes T’s, psych’s, and any other docs. Just feels much safer and secure.
 

Friday

Moderator
What is so bad about having docs talk to each other about you?
1. It’s illegal without consent.
Your Rights Under HIPAA

HIPAA violations are actually very very serious, and fall just under medical malpractice as the nightmares of medical admin & legal teams. The following isn’t the best article I’ve read outlining the whys & hows HIPAA works (I had to take a whole semester on medical ethics, a quarter on patient rights alone; I’ve read some really brilliant pieces)... but it’s overall a decent piece, and unlike my course materials, aren’t in a storage unit 3 states over, or pp500-722 in a textbook that costs an arm and a leg ;)). Hippocrates & HIPAA: What’s the Ethical Involvement?

2. it’s really, REALLY, illegal. Because not only was no consent to share information given... but the doctor was specifically told NOT to share it. Patients are allowed to refuse medical care, of any kind. It doesn’t matter if your OB thinks you should have a hysterectomy when you get your appendix out; if they ask you, and you say no... doing it anyway? Is wrong. Not even asking, before doing it? Is REALLY wrong.

3. 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.

@whiteraven ... 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. Filing a HIPAA Complaint
 

TruthSeeker

MyPTSD Pro
Unpopular question probably but I’m genuinely curious (for everyone, not just OP):

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? I know I would forget stuff, not realize what’s relevant, may be too out of it to begin with. So of course I want all information available to everyone. That includes T’s, psych’s, and any other docs. Just feels much safer and secure.

I limit what people need to know because people are prejudicial and bias. Doctors, many doctors, who are really very knowledgeable, can forget that they can make mistakes. They are human. People don't need to know everything about you to treat you. You have a medical record on line.....you can read them and choose which records go to which doctors. It's about privacy, confidentiality, and frankly.....not every doctor needs to know everything about you to treat every disorder you have. I think being selective is safer.
 
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