I’m working up a letter to send with John tomorrow when he sees his new Psychiatrist. Part of the reason I’m sending a letter vs. showing up is I want it to be known this is documented. The other part is honestly I feel like I might blow my freaking stack in there then get seen as the hysterical family member. Will you guys please review this letter and give me any feedback about it–things to remove or include? As you can imagine I’m terrified leaving him in the care of THIS for 10 days while I’m gone. And I’m launching this really hoping they don’t deem HIM too high maintenance (because of me) and somehow discharge him. As I’ve said a gazillion times, if trust is broken when you are in the stage of establishing trust with someone (in this case a program), then you are really doomed in terms of ever trusting. That’s where I stand with them right now so there needs to be some serious convincing me otherwise.
I feel like we’re headed in the direction of ditching this marginal program eventually and going in to the private sector exclusively with John but that takes time to set all of that up and I leave in just a few days. Anyway, here’s my draft as it stands now:
Sept. 3, 3013
Dear Dr. P********,
I’m sending this note with John documenting some concerns since we’ve transferred him to the ACT Team that are deeply troubling to me. We waited two long weeks with zero services right upon discharge from a difficult hospitalization for this “intensive” program yet what he’s received has been marginal at best and scary at worst.
The day we left after the transfer appt. (last Wed) John did not receive his Risperdone due to some “pre authorization” issue. I spoke with the Pharmacist who said it should be ready later that afternoon. I told him that John would be having a “med check” that day and he told me that case manager could bring it with them at that time. That didn’t happen. John was later told that is not allowed. But it’s what I was told directly to my face from the Pharmacist so I trusted this information—that his Risperdone would be filled that day and brought to him that evening.
The next day, John and I both called the ACT Team and left messages regarding this issue (and one other for me) and neither of us received return calls. We were told there would be case management on call for John 24/7 but two days went by with no return call to either of us. To this day no one ever called either of us, especially John back. He also went to the ER that day for the bladder issue he was still obsessing about. He left a message about that too. No one called him back regarding that either, not that it’s the concern of the ACT Team but I would hope if someone in a program “intensive” such as this, an ER visit for any reason would at least warrant a return call to check in.
John had, fortunately, two pills of Risperdone left but by Friday, he had zero. No one followed up on the “preauthorization issue” at all. Or contacted either of us. Even though we were leaving messages.
I was /am also concerned about the only service John received all week from the ACT team—the nighttime med check. He has been required to take his bedtime meds at 5pm. He is asleep within 30-60 min after taking those heavy antipsychotics. I know this because he lives with me off and on when he’s not doing well. I know that his needs may not fit with the “schedule” but that is totally disruptive. Who besides an elderly person would take their bedtime sedating medication at 5pm? He couldn’t possibly have any kind of evening activities, take the Spanish class he intends, go to a movie with me, nothing if he’s in bed by 6pm to accommodate the program’s schedule. Evenings are when he feels best and he’s getting knocked out.
He is very consistent with taking his meds. Med compliance is at the top of the ACT Team list clearly but at the bottom of mine as I know him. He’s very consistent. I discussed this with two case managers, both of whom said it could not be changed to morning med checks because you were out of town. If he needs to be observed, then mornings would be less disruptive.
John is also very depressed in the mornings. He has started hearing voices again over the weekend. He identified “Lucifer” as one of his voices. He has had zero contact from anyone from the ACT Team during the day time since he was transferred. He may or may not tell you this so I am sharing it.
John hasn’t even seen anyone from the ACT Team on the days he’s gone to Choices Enclave at my urging. Shouldn’t his or one of the case managers be working with him about plans to attend classes, ways to spend his time during the day? He met his primary CM briefly in the hall last week who’s one question was “do you like to play video games?”.
Back to the Risperdone issue. I finally got the Coordinator Sandra on the phone about this after calling a third time on the third day and getting transferred around. John had not one pill for that evening and it needed resolution that day.
She also reiterated you were on vacation, that she didn’t know how to resolve it if no preauthorization. Isn’t there another Psychiatrist on call when you are out of town? For a medication issue as serious as this? I reminded her it was ordered from YOUR clinic (Dr. Ahmad) and filled by YOUR pharmacy just two weeks ago. That he needed it today somehow. I said the words “John can’t just go cold turkey off of this”.
Sandra said back to me “he just might have to go cold turkey if we can’t get it authorized”.
I am still appalled that I ever, for any reason, heard those words out of someone’s mouth who works with acutely mentally ill people. He might have to go cold turkey off a major antipsychotic med over an insurance issue? Really? That is just dangerous.
I rarely do this but felt the need to play the “I’m a Psychiatric Nurse” card as I did work inpatient Psych as an RN for seven years as an assistant head nurse. I do know more than the average family member.
What she said back was “well if you are, then you know we can’t give meds that aren’t authorized”.
The fact that she was willing to even consider, for a second, that it would be appropriate for my brother to go off his Risperdone “cold turkey” with no supervision, with his psychiatrist out of town is something I can’t get out of my head.
After some back and forth and me pressing on this, she agreed to go look in to it and she called back a few moments later saying it had been authorized. When was it authorized I wonder? Why had no one called US on this and it required me calling multiple times to check on this? It terrifies me he’d fall through a crack on something as important as this. This could have been very dangerous to my brother’s medical status. No Psychiatrist would ever, knowingly, allow a patient to go cold turkey off a medication such as that and it appeared to me there was no one covering for you. No other name was mentioned as someone to contact or consult with. If the insurance wouldn’t cover it, we would surely pay for it to get it to him before the authorization could be worked out. Maybe he does need to go off one of the three major tranquilizers he’s on but certainly not “cold turkey”! This concerns me for an intensive program we are throwing all of our eggs in to.
The sum total of what John received this week, aside from the transfer appt. were brief med check visits at 5pm that actually disrupted his entire rhythm. No one showed up or called on Saturday so we figured that wouldn’t be happening on weekends then they showed up on Sunday, again at 5pm. Even the med checks he’s setting time aside for to wait at home for are inconsistent and unreliable.
I understand we’re all just getting to know each other here. I am a fierce advocate for my brother and I do know some things and am the best resource you have on him other than himself (who, being mentally ill, is not always the best). I see him almost every day when he’s not living with me.
I have expectations and I am leaving town with leaving him in your care for 10 days. Let me remind you, my brother was acutely suicidal for two solid weeks with a distinct plan to shoot himself within the last month. And he’s still depressed. That Risperdone issue has made me feel very insecure about his basic safety in this program.
I need to know that what we’ve been promised is going to actually occur. I would like an answer about the evening med check. I asked that it be changed to morning because the timing of those isn’t so impactful to his day. I’ve asked multiple people about how John is supposed to get seen by these various case managers and have not gotten an answer on that. Is he supposed to make appointments? Does someone call him? I also want to red flag that Risperdone issue so it never happens again.
I am writing this letter hoping that my voicing my concerns in no way affect my brother’s ability to still receive services from the ACT Team or Enclave. This is why I’m also sending a copy to the medical director of Choices Network.
Thank you for reading,
Cc: Ann M. Negri MD
3003 North Central Ave
Phoenix, AZ 85012
Any feedback appreciated!