Family and Caregiver Schizophrenia Discussion Forum

Why doesn’t someone ask me - When will my sons consultant ask me what I think instead of taking his word for it that he is ok

When will my sons consultant ask me what I think instead of taking his word for it that he is ok. She never sees him smoke incessantly , drink 10 litres of coke, eat a giant pizza at 4 am.stay awake all night , sleep all day…pace pace pace , spit spit spit. Son tells her yeah , fine , doing ok and getting there but actually having a shower is a major event . I get so down about his future. Going out with him is hard. He has lost all manners and was always polite and caring. Getting help,is so hard.his CPN turned out to be useless and just said he has capacity … only time he is motivated is when he’s admitted to acute ward and the one nurse is brilliant with him.stands for no nonsense . He can’t be in there though .


@Magicplz - My son is 41 and your post could have been written by me - every word of it. When I take him to the doctor and they call him back, I automatically get up and go back with him since he’s still covered by my health insurance as his secondary. His responses tend to be “fine” but the doctor then looks to me and I shake my head, he will either question him further or ask me instead. The last time we went, I typed up the “issues” since the last visit and asked the nurse to make sure that the doctor read it before he saw my son. I also made the comment that if I were to mention some of the issues myself, my son could take it out on me. Be assertive when you need to so you can get him the help he really needs. Best wishes to you both! :palm_tree:


Thank you so much. I don’t cope very well with it all.the medication is severe which means he never sees reality. Xx

Be aware that HIPAA restrictions in the US are one-way, you may call doctors and NP etc, and give all the background information you want. They won’t ask you BECAUSE of these restrictions, they are not allowed to discuss cases unless patients affirmatively sign a waver.

I’ve talked on background on my brother over the phone multiple times. They note what I say in his record, but beyond that I’m unsure what they do with the information, but if you wait for they to ask, you are in for a very long wait,


@Maggotbrane - Here’s the Code of Federal Regulations section that I’m allowed to get information under: “Outside of the HIPAA right of access, other provisions in the Privacy Rule address disclosures to family members. Specifically, a covered entity is permitted to share information with a family member or other person involved in an individual’s care or payment for care as long as the individual does not object. In cases where the individual is incapacitated, a covered entity may share the individual’s information with the family member or other person if the covered entity determines, based on professional judgment, that the disclosure is in the best interest of the individual. If the individual is deceased, a covered entity may make the disclosure unless doing so is inconsistent with any prior expressed preference of the individual. These disclosures are generally limited to the health information that is relevant to the person’s involvement in the individual’s care or payment for care. See 45 CFR 164.510(b).”

I’ve never had an issue once I bring up this section since they tend to say “no” to everything until I question them on it. And, since my son is still on my health insurance plan, it is my payment they’d like to get to pay any difference after Medicare.


All you can do is take it once step at a time … Keep posting! :palm_tree:

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In practice, this is largely interpreted as not signing off is an objection or they ask the client who often refuses. My siblings and I routinely fill out the paperwork for my brother and put our names in the disclosure section— sometimes he objects and won’t sign and sometimes not. While you may have luck with this gambit in a parent/child or young adult relationship when a child in on your insurance, making this case in other relationships is often difficult or impossible.

The bottom line is: 1.). Do not expect staff to ask your input on care or to verify the veracity of patients’ accounts. 2.) do not expect them to properly understand and interpret HIPAA rules, although you may be able to push them on such issues and exploit this fact.

The default is not to ask your input or participation, out of concerns of liability. A company will almost always take the strictest interpretation of privacy rules to avoid exposure to a complaint or lawsuit. I, for one, would not want my parents or siblings going on a vast fishing expedition about what I have and haven’t said about them in confidence in years of psychotherapy and might be inclined to sue the pants off a practice that defaulted to interpreting not actively objecting to disclosures as free reign for them to rummage in my files without my explicit permission.

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My extensive personal experience with hospitals and doctor’s offices (due to my son’s various health issues) has been that I can quote anything I want to quote, it just won’t matter - they are not going to give me his personal information. As is a matter of routine with all adult patients, they simply ask my son upfront if they can disclose information to anyone and he says “no” and that is the end of it. When I am present at hospitals helping him, I assure the hospital staff that its okay when he says they can’t give me an update. Often the medical world can be quite helpful. At a recent surgery the waiting room person came over and “reminded” me that she was unable to tell me if my son was out of surgery and she winked.

When I want information relayed to any of my son’s doctors, I send it on a fax (the medical world still seems to love faxes). I will not get a response but at least they have the information and know I am out there and involved.


I always thought the same thing until the administrator at the state hospital told me that people tend to “hide” behind the HIPAA - and that is true.

I should not have to fight tooth and nail just to make sure that my son (who had been in this one facility more than 30 times) had not been transferred to another facility. One time before I knew about the CFR section (which is law), I called my state representative and Lutheran Social Services (they disperse state moneys to the CSUs here in the state of Florida). They both followed up on my son and because the facility didn’t know what to do, they kept him for three weeks instead of three days. THEN, I knew he was safe.

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Great topic. Very frustrating. I once warned any caregivers in the ER where we’d been stuck for hours that if they didn’t get my son quickly into a facility or on his meds, there would be problems. They basically patted me on the head and said ‘we’ve got it’. They finally got a psych consult via Zoom (mid-Pandemic) and then asked me to leave. My son was mid episode. They didn’t ask him, they just asked me to leave.

I left. Pissed. And said, ‘It’s amazing that no one wants to hear from me’. Minutes later the head nurse comes racing down to the waiting room to ask for my help in calming him! I said, “No one fng believes me until they see for themselves”. I was less than endearing to the staff for the duration of our 20 hour ER hold until we finally got admitted. If I were completely sane before all of this, I am no longer!!

Further, beyond almost intentionally cutting parents out (hiding behind the HIPAA!) :hippopotamus:, medical caregivers seem loathe to cross coordination.

  • Do you want to speak with our psychiatrist, who has all my son’s history, meds, hospitalizations, etc?

  • Do you want me or his mom’s feedback? Want to speak to his younger siblings who often have to call 911 as I battle the beast within?

  • Would you please consult with us before changing his meds and provide your rationale? Yes, you’re the Doc, and he is your patient, but I’m fairly educated on the available meds and know of prior prescriptions and failures.

No? Wow. We’d never expect this on a complicated cancer case. We’ve created virtual tumor boards to bring in all relevant caregivers to discuss cancer treatment options. Why not virtual MI boards? (My next business?).


I called the police with my son. I am in the UK. Ten came !!! Armed with guns and tasers. How good did I feel. Ambulance refused to take him to hospital because he was verbally abusive as they were mis handling the situation . Police were great in fact. They offered to take him to hospital and pretended to arrest him. Son was good as gold with them. Admitted
to acute psych unit and looked after by the best nursing sister in the earth . How I wish that nurse could see him every day . I’ve even offered to pay her. The ambulance woman was disciplined and suspended as police made a complaint against her. Dear god, I could write a book.


Just an awful experience with doctors/hospitals in general. When I called the ER, where he was placed on hold for 3 days after police took him there, they couldn’t even tell me if he was still there or transferred to a psyche facility. All they said was that someone would be in touch with me from the psyche facility after he was transferred.

As a parent, the not knowing…it’s enough to drive you mad.

When someone did reach out to me from the psyche unit, it was like talking to a brick wall.

Was he ok? Was he eating/sleeping…

Simple everyday questions could not be answered.

All I could do was talk talk talk talk like a maniac to the social worker about my sons history, behaviors, meds he was on, as much information that I could cram in, and it was reciprocated with complete silence.

Awful system…


You and I have a lot in common, Sando! I don’t give a rat’s a$$ anymore about what they think of me in the CSUs since they believe if my son was brought in, then he must be off his meds. Not so! I will call them late at night when the on-staff people seem to more receptive to talking and I just act as if I know for sure that he’s there. I tell them DO NOT change his meds!!!

The first time my son went to the state mental hospital, two off duty police officers came in to testify for our side. When the oh, so civic minded magistrate and State Attorney’s people started talking about “what about a group home?”, I almost went off the deep end. I started pounding on the table and told them MY SON NEEDS HELP! I knew he wouldn’t stay in a group home and I was fed up! I thought maybe they’d think I needed to be committed! :slight_smile: For the first time in three years, that facility got to transfer someone to the state hospital - three years - so basically they had given up trying.

BTW, how is your son doing?

Exactly why I am there in the waiting rooms, in the halls and in the hospital rooms. He needs the medical care and things can go badly very fast. Usually I can run some sort of inference when I see that he is getting upset. It is a tricky business having an unmedicated family member in a medical situation where the medical personnel don’t know. Some of the nurses catch on that something isn’t right. They look puzzled and often will ask him questions that puzzle him. If necessary, sometimes I will infer that he is special needs in a very subtle way. People tend to treat special needs patients more gently with lots of smiles and this works very well to offset any voices he is hearing.

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He’s actually doing pretty well. 5.5 months at facility in Utah. Clozapine seemed to be the difference-maker. He’s Now back in Texas and we’re working on next steps. He’s been respectful, compliant, and accepting of his SZ diagnosis. He’s moving in soon w my nephew and has a reasonably structured plan for work and life. Says he wants to go back to college.

My wife and I feel unable to be happy or hopeful. We have best described our emotion as “yay?”. Where we think we should be happy but we’ve been through too much shiznit to even breathe and are waiting for the other shoe(s) to drop and/or explode.

But today is a good day. Hopefully we can string a few together. Thanks for asking.


It’s great to hear!

Well done, I hope he does well. Much love from England. Xxx

That is why I obtained full guardianship of my son so that they would have to listen to me and even before I secured the guardianship I wrote letters, clearly stating I was his full time caretaker and that my son would not and could not accurately report on his own self. I reported in great detail and often.

They have to consider letters received from caretakers and family. Had I not made my knowledge known to them my son would not be in recovery today.

In addition had I not been his legal representative payee for all of his money I would have never been able to gain control of his vices like his cigarettes, coffee, pop and sugar and his drug seeking efforts. Without access to money he was forced to live within my guidelines.

He went from 3 or 4 packs of cigarettes a day, a pot of coffee a day and sometimes almost a case of Pepsi and an unreasonable amount of candy and little Debbie’s and pot whenever he could score it to what he has today which is about a half a pack of cigarettes a day, 1 large cup of coffee a day and 1 pepsi a day and 1 sweet snack a day sometimes 2. and absolutely no pot. He does well with what he is given today and has no arguments over it anymore. His mind is so much more clear and reasonable now. Someone had to step in when he couldn’t do it for himself. I am glad I did. It is well worth the difficulties involved.


As the other reader responded, this too could be my post. It is heartbreaking when the HIPPA laws totally interfere with the help and assistance of our loved ones. It would seem that the Dr.s would want and require family or caretakers input to best help the patient but these laws do not allow that and our loved ones suffer greatly. It is part of their MI to deny any others to be involved as they believe everybody is watching them or trying to harm them. My unofficially adopted son whom I have tried to assist/support for the last 9 years was angry at me for no longer allowing him to be in my home after his threatening/bizarre behavior so to punish me he took me off the ROI with his therapist. Fortunately I have a great relationship with her, although she cannot disclose or tell me anything I have been able to share with her important information with hopes of that helping her to help him. You should always be able to do this and if the Dr or therapist does not want to listen, they are not putting your loved ones best interest first. At present, my son is homeless and blames me for everything, which in his state of mind could be dangerous. I have installed security camera and try to be aware of where he is as best I can. He had a good job, I found him a room to rent near his work and he was adamant I not be involved with anything after his transition, he wanted to prove to me that he could do it on his own and I knew it was only a matter of time. I honored that and within 2 weeks, he lost his job for not showing up and then the landlady was calling me frightened for her safety. She was missing expensive jewelry and also a loaded firearm, he ate all her food and then refused to leave her home, took hr. long showers at 3:00 a,.m. stole her car keys, shouted vulgar things to her and had scary behaviors again, I had to cal police for a welfare check on her when I did not hear back from her and I was adamant to the police to NOT tell him I made that call and found out later he disclosed that information to him which puts me in harms way. I had to report all of this theft and behavior and got her to do the same. He insists he did nothing wrong and that the woman was crazy. UGH… He was finally served a 3 day eviction but had to be forced out anyway. He is in desperate need of help but refuses and always insists there is nothing wrong with him. He also smokes like crazy and never smoked before, he spits al the time and insists he is being watched by police, etc. says there is a gps planted in his ear and that he knows about things and that is why they are watching him. I am so concerned for him and others but yet with our crazy laws, they will do nothing until he breaks the law and in the interim he desperately needs help like I am sure many others who are not receiving it.! :frowning: I can so relate to your heartbreaking story.

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