My Journey: Reading Psychiatric Records

The_little_didgee · Aug 22, 2021 at 01:42 PM

I am creating this thread to let others know what the process of reading and correcting psychiatric records is like. It is a journey, one with a lot of discovery and emotion.

I have decided to pursue correction of my records to (hopefully) mitigate the harm that was caused to my family, and understand what happened so I can feel okay with that traumatic period of my life.

If you have read your records, please share your experience in this thread or through private message.

The_little_didgee · Aug 22, 2021 at 02:15 PM

I’m nitpicking every consultation and discharge summary. I'm looking for errors and recording them in a word document that I will attach to the Request for Correction to Personal Health Record form.

The hospital offered to correct my records twice before, but I did not have the courage to go through with it back then. Now I do and it hasn’t been easy reading through the documents. A lot of memories and feelings are surfacing. At times it’s overwhelming. I am also learning new things about what happened and why I was so poorly treated. I also discovered some disconcerting content, that I always suspected was present in my records. -- Assumptions about me were made based solely on my race.

Here are my first findings of discharge summary #1:

The disturbing content I have found in my records mentions that I grew up in a First Nations community and that my parents, specifically my father, were alcoholics. “The patient’s family history is significant for alcohol abuse in her father.” This is not true at all. The same psych resident wrote: “The patient also has a history of sexual abuse and physical abuse in the past.” She did not add anymore information to support those claims. None of this is true. She wrote in the social history portion, “The patient grew up on a reservation in Quebec and describes feeling “different throughout her life". She left it at that, not even bothering to explore why I felt different.

I felt a multitude of emotions as I read through the document. Anger and disappointment seem to be the strongest ones followed by sadness, disappointment and remorse. It is hard to understand why the staff psychiatrist and the resident were so willing to conclude that I was abused and came from a dysfunctional family. I suspect it is institutional racism, something I always felt even all those years ago. I know it is all due to my Cree heritage and where I grew up. Once they knew that, it made them myopic and it started a cognitive bias chain reaction.

Apparently all Indigenous people are drug addicts, child abusers, alcoholics, lazy unemployed bums who live dysfunctional lives. This is far from the truth.

They were too quick to judge and use assumed facts to diagnose me with a personality disorder (Axis II). I always suspected this was going on or as I prefer to call it - shaping the patient into the diagnosis.

----

I’m in Ontario, Canada where there has been a lot of discussion about Indigenous people and the negative effects of colonization. Last fall there was a shocking incident in Quebec where an Indigenous lady died in hospital. Nursing staff said things to her that were very unprofessional and based on Indigenous stereotypes. Shortly before the lady died she recorded the interaction that was later shown on mainstream media. This incident, the recent discussion on residential schools, and my interactions with psychiatry made me wonder about the content in my records, specifically how much my Cree heritage influenced their assessments of me.

When I was assessed for autism spectrum disorder my mother attended one appointment, where she discussed my developmental history. She brought up my hospitalizations, specifically how bad I was treated along with my family. I remember her stating how she felt harshly judged and felt it was all due solely to race. It turns out she was correct.

There is definitely institutional racism and stereotyping, along with a lot of cognitive bias in psychiatry. My records support these observations.

The_little_didgee · 03:51 PM

My very last admission was particularly traumatic. The psychiatrist I dealt with was invalidating and abrupt. After that admission I vowed to stay away from psychiatric services. - I later refused 4 hospitalizations, because of this one particular experience.

In his discharge summary there is no mention of my race. However his charting was inconsistent with the brief visit. Apparently he offered to refer me to the Acute Day Hospital which he never discussed and I met with a medical student and resident. Actually I met him and a nurse (who I can name) in the visitor's lounge. All he did was review medication and refer me to a social worker to access community services and discharge me. There was no other discussion.

In this document he mentions another staff psychiatrist and the hospital's patient representative, a service I was unaware of at the time. Apparently I made a complaint to the patient representative, who contacted the department chief psychiatrist who spoke to this doctor. He wrote the following:

"The patient met with the patient representative following discharge with whom I discussed the care offered to her and also with Dr. (unknown). I also had a call from a resident with the patient having threatened suicide over the phone to the patient representative. There has been no follow-up visits through our Emergency Room at the time of this dictation."

The problem with this is major. I'm not the patient he wrote about. He mixed me up with another young lady. I never complained to a patient representative about the care I got, nor did I discuss this admission with any staff member. I certainly never threatened suicide over the phone. - Another example of cognitive bias, specifically related to the BPD label, which he wrote beside Axis II.

Reading this document angered me. It demonstrates how much power these people have and how easily an error can perpetuate discrimination, etc...

This particular doctor tried to blacklist me from the hospital, all because of the BPD diagnosis. He wasn't successful, since the hospital doesn't allow that.

I'm going to ask the hospital to investigate this for the sake of correction. I may contact CPSO.

Always check. Verify. You deserve quality care.

The_little_didgee · Aug 22, 2021 at 04:21 PM

In 2016 the hospital acknowledged the harm I went through. This was organized by my psychiatrist who felt it would be reparative. She referred me to another psychiatrist who specializes in ASD for another assessment. It took a lot of convincing to get me to agree, since the appointment was at the outpatient clinic that is directly connected to the inpatient unit, the very one I was in years before.

It turned out to be a very helpful consultation. I went three times and really enjoyed my discussions with the psychiatrist, whom I actually met years previously while she was a resident. This particular doctor asked me to participate in the teaching program.

In her consultation she wrote:

In the 90's diagnoses of AS/ASD were almost never entertained. Generally, women with what we now know to be AS/ASD, who were struggling to fit in and who were difficult to manage, were diagnosed with BPD.

Didgee's reaction to her unfortunate experiences in the hospital system has been one of trauma which has affected her self-image and led to (appropriate) lack of faith in the system, as she was branded with a diagnosis that has a pejorative consequence in the system. Due to cognitive bias this label led to subsequent repetition of the diagnosis and lack of entertainment of other diagnoses. Today, Didgee would likely have been diagnosed with AS/ASD in childhood.

This was validating.

SlumberKitty · Aug 23, 2021 at 05:07 PM

Thank you for this thread @The_little_didgee There are things in my hospital records that are wrong. Namely that I was suicidal when I wasn't which led to me being 5150'ed (or kept for 72 hours involuntarily and then switched to voluntary which I didn't want to sign but it was better than being involuntary so I signed it). One of my T's said I could go and correct the hospital records but it's at two hospitals and it seems overwhelming. I don't even know where to start. I don't know what else is wrong that is in them but that is what I know for sure is wrong. I did write a letter of compliant to the hospital but I don't think it did any good. I'm scared of going to the hospital to this day though. I'm sorry you went through these experiences. HUGS Kit

The_little_didgee · Sep 04, 2021 at 12:10 AM

I read through 87 pages. It wasn't easy, but I got through it. I couldn't have done this in 2016 when I was given some of the records by my psychiatrist. Those documents stayed in an envelop for 5 years until I finally had the courage.

I'm feeling many different emotions. It's hard to fully understand why I ended up as an inpatient at the house on Smyth Road. There are patterns and themes to what I read and a lot of non-compliance. I can now see why they misdiagnosed me with a stigmatizing illness. Some psychiatrists even acknowledged that in their notes.

The records are filled with "feelings of being unheard". That describes it quite well. I felt minimized and judged. Being heard and validated would have made a huge difference especially with compliance.

Psychiatry was like the bully who tortured me for 5 years in the school yard. No one was there to back me up, just like when I was a child. That is probably why this period of my life hurts so bad.

There are a multitude of diagnoses, but the focus was on the stigmatizing one. The attending I was assigned to was fixated on it. That was all she saw. One of her residents dictated a few of the summaries. In his assessment he noted my autistic traits, thinking they were a part of the schizophrenia spectrum. He also noticed I had an anxiety disorder. No one noticed that back then due to cognitive bias. He actually almost figured it out.

The_little_didgee · Sep 04, 2021 at 12:41 AM

"The patient, while in hospital, talked about her diagnosis of borderline personality disorder as being one of her main stresses. She talked about feeling rejected by the medical system. Attempts were made to try to help her look objectively at symptoms and try to find ways of dealing with them."

It was all I talked about and why I wanted to die. That label led me to the breaking point. I lashed out and let my anger seethe. What is so disturbing is I became like this due to psychiatric treatment. I entered sad and exited broken. It felt like I was shaped into this diagnosis, because no one really wanted to understand. It's easier to tell a patient to **** off then to investigate the causes.

This diagnosis was used to deny treatment and impart despair. One psychiatrist even tried to ban me.

I felt judged. I wasn't a"youth in turmoil who has a history of abuse." I was a person who had undiagnosed ASD and endured 5 years of bullying. If I had known why I struggled, I don't think this would have happened or at least not like it did.

Doctors can be wrong. I was told I would never amount to anything. BS. They were very wrong. People change. They really do.

The_little_didgee · Sep 05, 2021 at 02:29 PM

Go to Emergency. It's the worst advice in some situations. There are other options. Sometimes staying with a good friend or family member is all that is needed to get through a crisis. Even talking to a therapist or the like in the community can be a better and less traumatic option than at a hospital. The hospital should be the last resort.

Is it a genuine suicidal thought with intent or a brief thought, like one of frustration? - Apparently some mental health clinicians cannot tell the difference.

I rarely get suicidal. The last two times I felt that way was at the ages of 34 and 42. When I was 34 I didn't tell anyone until 1 year later. Why? Fear of hospitalization and misdiagnosis. The most recent time was last fall when I had a lot of stress going on. I was nearly broke and unemployed due to the public health response. I felt trapped and overwhelmed with the unknown. That time I told the therapist, only because I trusted her. We discussed the possibility of hospitalization, but I turned it down. I told her it would bring back memories of what happened. So, instead we meet weekly for a bit. It was all I needed to sort through my thoughts and feel better. Anyway it was more of an adjustment reaction than an episode of MDD, like I had when I was 34.

The_little_didgee · Sep 05, 2021 at 02:49 PM

I'm so traumatized by my experiences that I cannot even seek medical treatment for medical conditions unless I can see my family doctor. For example, I had a urinary infection that made me quite ill last March. My urine looked and smelled bad. I also had a fever and body aches. It wasn't enough to motivate me to seek help. I treated the infection by drinking a lot of coffee immediately followed by large amounts of water. It worked.

There is always doubt. Am I sick enough? Will the doctor minimize me and accuse me of malingering? Will my symptoms be interpreted as psychosomatic?

The_little_didgee · Jul 03, 2022 at 09:03 PM

Quote:

Originally Posted by SlumberKitty

Thank you for this thread @The_little_didgee There are things in my hospital records that are wrong. Namely that I was suicidal when I wasn't which led to me being 5150'ed (or kept for 72 hours involuntarily and then switched to voluntary which I didn't want to sign but it was better than being involuntary so I signed it). One of my T's said I could go and correct the hospital records but it's at two hospitals and it seems overwhelming. I don't even know where to start. I don't know what else is wrong that is in them but that is what I know for sure is wrong. I did write a letter of compliant to the hospital but I don't think it did any good. I'm scared of going to the hospital to this day though. I'm sorry you went through these experiences. HUGS Kit

There are a lot of examples of misinterpretation in my records. It appears to be common.

I was accused of being suicidal on May 17th 1996 while at the Civic even though I wasn't. A fainting spell sent me there. That only surfaced after they spoke to a psychiatrist from the General. Questioning me probably contributed. At the time I was in a bad state of delirium that they failed to recognize. Many different staff members noticed and mentioned that they were unable to get a history due to my mental state and that info I provided was questionable.

Reading records is worth it but you have to be prepared. There is a lot written in them that is not communicated to the patient. E.g., apparent malingering. No one ever discussed that with me.

Having a clinician assist you will be very helpful. That person can explain the notes. My psychiatrist helped me with this.

I have noticed that really good clinicians will wrote comprehensive notes, and leave out personal opinion or character attacks. If a note is consistent with an encounter that highly suggests the clinician is somewhat honest and interested. A good clinician will show their notes to a patient when asked.

Reading my records made me realize that not all doctors can be trusted. Ones who lack self-awareness and the inability to reflect are dangerous.

Everyone should read their records.

P.S. Here in Ontario a Form 1 is equivalent to a 5150.

The_little_didgee · Jul 07, 2022 at 12:24 AM

They replied:

Dear Didgee,

Thank you for contacting the Department of Patient Relations at The Ottawa Hospital to share your experience and provide constructive feedback on how we can improve patient services. I am very sorry to hear of your medical experiences. I would like to assure you that your email will be forwarded to the appropriate departmental stakeholders for review and consideration, so that they may learn from your feedback.

Thank you again for taking the time to share your experience with us.

I wonder if they will do it? Will it get lost? This hospital is really bad a communicating. It gives the impression the patient doesn't matter.

The_little_didgee · Jul 14, 2022 at 11:11 AM

They sent an email to notify me that my paper chart will be will be destroyed within the next 24 months. They also told me they would not scan and upload it to Epic.

The amount of data this hospital collects and retains is incredible. If I had known this I would never have used their services. There is really nothing confidential about it at all.

The_little_didgee · Nov 26, 2022 at 02:33 PM

Yesterday I met with an advocate from an Indigenous organization to discuss my traumatic dealings with the General Hospital. The psych service now called Mental Health diagnosed me based on the side effects of medications and misdiagnosed delirium due to polypharmacy because certain staff psychiatrists didn't recognize their cognitive biases and stereotyping. Note that it was easier to destroy me than try to figure out what was going on.

I laughed when the lady asked me what floor I was on. When I blurted out 4 North, she knew exactly what I was in the hospital for before I even told her.

The plan is to write the corrections request letter for all my discharge summaries first. There is a lot of inaccurate information contained in these documents. They wrote my father was an an alcoholic who sexually and physically abused me. He did not.

We also discussed the possibility of contacting a lawyer. I'm not interested in suing for malpractice at this point even though I may have a case for the drug induced delirium I had. I also told her I want to submit a complaint to the Ontario Privacy Commissioner's office about the hospital's encounters list on EPIC and OACIS. Some visits list psychiatric diagnoses entered by emergency medicine physicians without me seeing the psych service which was usually a resident.

I have a consent directive on my records that is supposed to protect me and my privacy. It is useless with the encounters list because it contains psych diagnoses made by emergency physicians. -- This list was used by a nurse to gather information and a misdiagnosis since nothing else was available to him.

For the curious: Consent Directives - The Ottawa Hospital

Something positive in going to come out of this. I can feel it. I'm not the only Indigenous person mistreated by this hospital. There are a lot of us. We are going to bring it to their attention.

185329 · Sep 07, 2021 at 11:03 PM

I remember when I was in the psychiatric inpatient unit. I remember being quite delusional. I was in a very heightened psychological state of mind, which explains my delusional thinking. However, I wonder how and why it explains my delusional thinking? Just because my consciousness was "heightened" does not necessarily mean I was delusional. I remember telling my social worker about my delusions and he explained to me that I was "very emotional" and in a "heightened" state of mind. But that was all he said. If he had elaborated, maybe I would have agreed with him. But then again, we both did agree that my delusions were because of my "reading into" my experience at the psych ward too much. That's what we both concluded and agreed on.

Sep 08, 2021 at 07:09 AM

my records are basically ****ed

wrong diagnoses, wrong year of birth, and medications I've not even taken

difficult to sort out.. it's been an ongoing battle

Sep 09, 2021 at 04:31 AM

what I hate the most is that my records say I was born earlier than I was, so make me seem older.

in the grand skeme of things, it could be worse, I know, but it really ircs me

The_little_didgee · 04:36 PM

I have avoided this thread lately, even though I have been thinking about it. Right now I am feeling angry about what happened. I wish the hospital would give me all the paper records (I'd like to burn them.) and delete the electronic files off of the Epic EMR.

What really irritates me is the lack of communication especially the direct kind. I have always suspected people are full of it. They almost always say things they don't mean. It's a part of the NT script and their obsession with conformity. Apparently it is unwise to question and discuss anything. The pandemic is a perfect example. Humanity is so good at dividing and stigmatizing people who challenge the prevailing view which might be wrong.

In the autism community getting diagnosed with a personality disorder is common. Here is what one person wrote on a blog:

“Borderline Personality Disorder” is just NT clinical speak for “I despise this patient & I will screw them over every way I possibly can in hopes of pushing them to suicide.”

That is exactly how it felt. They nearly broke me and drove me to suicide. I think that is what their goal was.

I think about what happened a lot to try to figure out why it happened. There are so many different factors that contributed. I know for sure that one is medication. I'm sensitive to it especially SSRIs. They tend to make me very irritable which was noted repeatedly in my records. Some can make me suicidal especially Zoloft and Paxil. The doctors apparently kept trying to get me to take medication, but always told me that nothing would help. They emphasized that.

The attending psychiatrist I was assigned to prevented any further investigation. Her resident, who almost figured it out, was ignored. She definitely failed as a doctor because of her biased opinions and stubbornness. - Proof that she was guilty of "black and white" (rigid and polarized) thinking.

The_little_didgee · Nov 12, 2021 at 10:58 PM

"Follow-up will be done by Dr. ---- as an Outpatient. The prognosis remains poor for this patient who has poor insight and a poor support system."

How is it possible to have insight into a problem that never existed?

The author of the quote stated I was a heavy substance abuser, which was far from the truth.

Some of the discharge summaries reveal harsh judgements of character that border on unprofessionalism.

I should point out that the prognosis was incorrect. It's damn obvious.

Someone close to me once said "I know you, they don't."

zapatoes · Nov 20, 2021 at 06:09 AM

It seems like a patient advocate could help you at least delete incorrect information about a boyfriend beating you up. Any incorrect information that is about another patient should be deleted from your medical records.

The_little_didgee · Nov 26, 2021 at 03:39 PM

Quote:

Originally Posted by zapatoes

It seems like a patient advocate could help you at least delete incorrect information about a boyfriend beating you up. Any incorrect information that is about another patient should be deleted from your medical records.

Some of the comments are so ridiculous. There was another one about me being assaulted at a bar during a weekend pass and getting drunk. What the ****?????? I never did that.

Apparently the hospital records department submits a patient's correction request to the head of department they received care from, if their attending physician no longer works at the hospital. This individual can make the requested changes.

I plan to contact the hospital's family and patient advocacy office after I am done reviewing my records and submitting my correction request.

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Anonymous32451 Guest Posts: n/a	Sep 08, 2021 at 07:09 AM #15 my records are basically ****ed wrong diagnoses, wrong year of birth, and medications I've not even taken difficult to sort out.. it's been an ongoing battle
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Anonymous32451 Guest Posts: n/a	Sep 09, 2021 at 04:31 AM #16 what I hate the most is that my records say I was born earlier than I was, so make me seem older. in the grand skeme of things, it could be worse, I know, but it really ircs me
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zapatoes Grand Magnate Member Since Sep 2018 Location: Islandia Posts: 4,263 (SuperPoster!) 5 10.9k hugs given	Nov 20, 2021 at 06:09 AM #19 It seems like a patient advocate could help you at least delete incorrect information about a boyfriend beating you up. Any incorrect information that is about another patient should be deleted from your medical records.
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