I have been experiencing years of pain and ineffective treatment; I was finally directed to Dr. Nicola Longo, the clinical chair of genetics at UCLA. He said I need to have a sleep deprived EEG and a nueropsych evaluation done before meeting him. I had trouble to schedule an appointment within UCLA’s system; therefore, I switched to Cedars - Sinai. I was scheduled with this psychologist without experience. I called in everyday, and rescheduled to a different psychologist. Upon check, I found he doesn’t have experience either. I called in again, asking if I can switch to an experienced doctor; the experienced doctor does not have earlier availability before my genetics appointment. I scheduled with the experienced doctor and was confirmed that earlier cancellations happen on a frequent basis. Two weeks prior to my genetics appointment, I contacted Cedars-Sinai again, learning that I have a 20th spot on the waitlist. I contacted patient relations department; I said I was confirmed by the front desk that an earlier spot is a possibility; I did not know I would be moved to 20th spot on the waitlist. They helped me to get a nueropsych evaluation two days after. I was put with the inexperienced psychologist with whom I originally scheduled. I was told that while she doesn’t have a lot of experience, she held the highest license in their field. Her supervisor told me that she qualifies for 100%z I thought, okay, I went to the psychological evaluation in pain; and I wasn’t able to sleep at all the night prior. Eventually, this neuropsychologist told me that she can conduct a “interview”, but she has to postpone the formal evaluation after 3 weeks, because she has a vacation.
I told her that I have a rare, time sensitive appointment, and I talked to her supervisor before due to an issue with the front desk. By the time, I didn’t know what I was talking about since I was experiencing a lot of pain. She immediately agreed to move my testing to this Tuesday. She usually does not see patients on this day.
However, after 2 hours of testing; she said that her clinical impression is that I have mild autism. She cannot officially diagnose it, but she thinks my symptoms can be “examples of neurodivergence”, because “autism people frequently have these problems”. I wrote a 10 page narrative to bring to her in my second evaluation. I also said I met four different doctors — three internists with over two decade of experiences for each of them and two neurologists who all agreed that I definitely have an advanced issue. She said she holds her clinical impression.
When I asked her of my raw testing data, she said she cannot release them to me, because only she is licensed to interpret it. She is a licensed psychologist. The clinical genetics chair of UCLA is not licensed. Since she has a 3 weeks vacation immediately, and it takes another two to three weeks to write a report. I have to wait five to six weeks for my nueropsych report, just like every patient. This is the “due process”.
She can only tell my genetics doctor that her clinical impression is “mild autism”. I asked her if it is her official diagnosis, she said, this nueropsych is too short for a diagnosis, she is not specific in the field.
She suggests me to visit UCLA’s nueropsych team. However, she will write that her clinical impression that I have mild autism. She cannot give me any raw data. I am free to talk to her boss about the issue. I just have to wait in line like every other patient for the full nueropsych report.
She also kept my 10 page personal narrative with her; after demanding these documents, she used white-outs on these documents. She reprinted the first three pages of my narrative. She claimed that her notes were not clinically salient enough. I said it is my patients right to obtain these documents and the raw data. She said it is not my right, and giving me the raw data and the notes can cause her to lose the license. I said my notes are my personal property, she said, so is her notes, they are her personal property.
I wrote to cedars Sinai’s patient relations, but my language was less calculated; now, they tell me that it takes up to 30 days to process a grievance. I checked online; cedars Sinai’s webpage shows that I visited her supervisor, another doctor with 2 decades of experience, instead of her. I found she is a doctor who just obtained her formal license around a year and a half ago. Just a year and a half ago, she was a psychological associate. What should I do?
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