fierce advocacy

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Hi guys,

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,

Kathy Monkman

480-491-8224   katiecoolady@yahoo.com

Cc:  Ann M. Negri MD

       3003 North Central Ave
       Suite 300
       Phoenix, AZ 85012

 

                                                                              Any feedback appreciated!                                        

40 thoughts on “fierce advocacy

  1. Kiminnm

    Well, my first thought is it is too wordy..if there is a way that you could cover the points more quickly..Doctors always seem to be in a hurry. The key points to me are #1: respidone not filled and possibly have to do without when he has expressed violent suicidal ideation. Who would be the attending dr. When he is out of town? #2. Medication ck too early in day. Asleep by 6pm every night. # 3 Your deep concern that they will not be monitoring him when you are out of town which is coming up soon. #4 He has indicated hearing some voices again. (Would that be lack of respidone?). Just my thoughts…definitely glad you are documenting!!
    Kiminnm

  2. MsDeb

    You brought out every single important issue that needs to be addressed…you did it in such a way as to sound knowledgeable (and professional), but not overbearing. Addressing it to the psychiatrist and copying Dr. Negri was a well thought out decision. Here’s crossing my fingers that the MD’s are astute enough to grasp that you are well aware of the substandard and dangerous practices being offered as treatment for John’s ACUTE issues.

  3. PMLsmom

    I would echo Kiminnm – Use bullet points, terse and succinct. Think like the Psyc. nurse you are, think “patient chart” information. I know you are his sister first and foremost, but appeal to the Dr. clinically (not that you didn’t, but it sounds more emotional than I think you want it to). JMO

    God bless and prayers that you can (again) make things right for your brother. Prayers that somehow your strength, wisdom, and caring will rub off to the other “professionals” who are supposed to be bearing the brunt of this situation.

  4. lovelaw

    I agree that it is a bit lengthy. As per suggestions; if you can focus in on “bullet points.” Go through, pick out your major concerns, and laser in on each. Your emotion is causing you to feel you have to explain, explain, explain, for fear your thoughts are not getting through. I know you can do this!!
    It might help you to read the letter AS a psych nurse, and consider how you would perceive the letter had it been written TO you.
    GOOD LUCK!! ❤

  5. spellbound4

    You have covered the concerns well, but I have to agree that doctors may only scan quickly through something this long. All the other suggestions have said it much better than I can. It is a good letter, KCL — now to condense it yet keep its strengths. You can do it well, I am sure.

  6. NancyB

    In 1st paragraph – delete right upon and substitute following the discharge…Agree with Kimiin. If you send me an email, I will re-write for you now and email back to you, if you want. All of the points you mentioned are very important but it needs to be tightened up. Heart you!

  7. Stacy (IfIMay)

    I agree with those much more eloquent than me. It’s a great start. Just condense it down to laser in on your concerns and I think it will have the impact you hope. Kudos to you for being so involved and such a great advocate for John.

  8. Just a quick note to let you know that I’m on the same page regarding this post. There are many good thoughts from those that replied already. I will add my Prayers to those already praying.

    Love and Prayers,
    Healing Hugs,
    Paula ♥ ♥ ♥ ♥ ♥

  9. NancyB

    Dear Dr. P********,
    I’m sending this note with John that documents some deeply troubling concerns that I have since he’s been transferred to the ACT Team. After John’s discharge from a difficult hospitalization he went 2 full weeks without ANY services until this intensive program began. I believe that was a dangerous plan for someone in John’s unstable condition. This letter will notify you of my concerns about response time, lack of availability of services promised but not provided and the initial judgment decisions that were made by a member of this team that I believe to be dangerous and unacceptable.

    After the transfer appointment on August 28th, John did not receive his Risperdone due to some “pre authorization” issue. I personally spoke with the Pharmacist who stated that it would be ready later that day. I told him that John would be having a “med check” that day and the Pharmacist told me that the case manager could bring it with them at that time. That didn’t happen. John was later told that is not allowed. Yet that is what I was directly told by the Pharmacist so I trusted this information—that his Risperdone would be filled that day and brought to him that evening.

    The next day, between John and I, we placed three calls to the ACT Team with messages left, yet neither of us received a call back from anyone within the following 48 hrs. We had been told there would be case management on call 24/7 but that did not happen. On the 3rd day I finally spoke with the Coordinator, Sandra. I explained that John had no more Respirdone for that evening and this required resolution that day. Sandra kept explaining that you were on vacation and that she didn’t know how to resolve it if there was no preauthorization.
    Isn’t there another Psychiatrist on call when you are out of town to manage clinical status changes or 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 John needed it today – I told her that it would be medically dangerous for John to go cold turkey off of this medication. Sandra told me that “he just might have to go cold turkey if we can’t get it authorized”. I am appalled that anyone on the ACT team would deem that as a reasonable and safe response for an acutely mentally ill patient/client. No reasonably safe plan of care would ever include going cold turkey off a major antipsychotic med with no supervision over an insurance issue? That is just dangerous.

    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 that he’d fall through a crack on something as important as this. This could have been very dangerous to my brother’s medical status. 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”!

    John also went to the ER on Aug. 28th 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 any patient was seen in the ER that an ACT follow up call would be placed. Fortunately, John had two pills of Risperdone left but by Friday, he had zero. No one followed up on the “preauthorization” issue at all even though we both had left multiple messages. The lack of response from ACT just increased John’s anxiety, worrying that he would not have his necessary medication.

    The only service John received all week from the ACT team was the inappropriately timed nighttime med check at 5PM. This med administration time is completely disruptive to his life and is totally unacceptable. He is asleep within 30-60 min after taking these heavy antipsychotics that have a sedating effect. I know this 1st hand because John lives with me off and on when he’s not doing well. Taking his meds at 5PM precludes the possibility of having any kind of evening activities, including the Spanish class. It prevents going to a movie with me or even out to dinner, as he’s in bed by 6pm to accommodate the program’s schedule. Evenings are when he feels best and he’s getting knocked out.

    John is very compliant with med administration. I discussed this with two case managers, both of whom said the med check could not be changed to a morning med check time because you were out of town. If he needs to be observed, then mornings would be less disruptive to the quality of his life. 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?”

    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 will not be in town (dates) and will be leaving him in your care for those 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. I need confirmation from you that my expectations that John will be secure with the ACT program providing for his basic safety needs is solidly in place.

    I would like a response from you about changing the evening med check to a morning time appointment. 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. Lastly, I need to know if you have provided for another Psychiatrist to take call when you are unavailable.

    I’ve written this letter in hopes that bringing my concerns to your attention will in no way affect my brother’s ability to continue to receive services from the ACT Team or Enclave. I’ve also sent a copy to the medical director of Choices Network so that everyone is in the loop regarding the concerns addressed in this letter.

    Thanks in advance for your time and attention to these issues.
    Kathy Monkman
    480-491-8224 katiecoolady@yahoo.com
    Cc: Ann M. Negri MD
    3003 North Central Ave
    Suite 300
    Phoenix, AZ 85012

  10. NancyB

    I disagree – I think he will read it. I also do think you need to schedule a phone or in person meeting with him prior to leaving town unless you get an immediate response – a call or letter from him within 48 hrs. Just my 2 cents

  11. Kiminnm

    Yes, being there would be the best if its possible! Will say prayers that it all goes well!! Blessings to you and Alphonse …kiminnm

  12. Ok these are my decisions: I’m going to the appointment at 9am with John. I need to take a breath and go in and express my concerns without losing my cool. And I will bring this letter to ask her to put it in his record. I ended up with a too long (I’m sure) amalgam of my style with bullet points and less emotion (I think). Main thing is I’m sending it to the Medical Director of the entire organization who is also a Psychiatrist. I heard from Dr. Yasinski tonite inquiring about John (he’s so nice). I feel 99.9% certain we are headed in the direction back to his services but I need time to assemble a good team around him if we do that before we ditch these nitwits. That may take a few weeks. So…….I’ll keep you all posted how it goes..wish me luck. I’m hoping for a great night’s sleep and being super rested for this meeting. 🙂

  13. Chris

    Stop!!! Don’t beat yourself up over the writing a letter. Good idea to bring a copy of the letter and have it all documented.Both you and John will feel better now that you have decided to attend the meeting. The new doctor will clearly see that your professional experience and the love you have for your brother makes you a fierce and formidable force. Wishing you both a productive appointment and hoping this new doctor can make a difference.
    Peace.

  14. Bravo Kathy, for your unrelenting persistence, optimism and of course, fierce advocacy for John. {BTW, if you were an idiot, every village should be so lucky!} Hope you are getting another restful night’s sleep to be at your very best cool, composed, fang-retracted self. Excellent suggestion from Nancy, to schedule a follow-up before you leave town. I’ll be thinking of you and John, and holding thoughts for the best possible outcomes from tomorrow morning’s meeting. XOXOXO

  15. Chris

    Jan,
    This is just my opinion but your comment seems to be quite condescending and insensitive.
    Just maybe you should re-read your post and envision that you were the recipient and then ask yourself if what you read helped you in any way.Maybe Kathy is trying to look at the glass as half
    full and maybe your not.

    • Chris I deleted that post. We have a good vibe going here and since this is my house I get to decide the guest list. It was actually the second reply that caused me to say no thank you. Easy as pie. 🙂

      • Chris

        I felt very compelled to voice my opinion on that particular post. It just didn’t feel right to me.
        like getting snapped with rubber bands, it stings.
        😦

      • Thanks Chris. Here’s the thing- it’s very easy in ANY challenging situation to get sucked in to voices and thoughts of discouragement- it’s all around us. But that’s not what we’re about here. We are about finding something different that flies in the face of those voices and discouragement. Call it unrealistic or a pipe dream? Maybe. I call it creating a wonderful life no matter what’s falling around me. And I think you all feel the same.
        So I won’t tolerate that kind of pessimism even if its totally “justified”. It’s not the point so at least in this tiny corner of the world, we can choose differently. Ahhhh

        Now I’m sitting outside the clinic with the Dr. Letter in my lap and a nice dress on. Wish me luck! And please send good fang retracting vibes. 🙂

      • spellbound4

        I gree ith Hris an am glad you delee that pot KL (haha! Fingers won’t work this tablet today, this was my third attempt to reply. Thought I would leave it and let you see that I could just as easily be the Village Idiot today. Sorry if I usurped your position, KCL. 🙂 )

        Was trying to say I agreed with Chris and am glad you deleted the post. We are all here trying to be supportive and never critical of our differences, choices, or plans of action.

        hope this day goes well!

      • The appt went ok- the dr. took him off the ridiculous 5pm med checks, is changing his meds and seeing him weekly. The coordinator dug her heels in and was defensive as I predicted but so what? She got called out. Well see what happens…. Xoxo all

      • spellbound4

        I guess that’s a decent start, KCL. I know we would all like to have all the bases covered “yesterday”, but small steps are better than none. I hope John is doing OK today and it gets better from here. Hugs for YOU!

      • Thanks sweetie- my biggest hope is he gets through the next two weeks unscathed. I don’t see us staying with this program long term but just needed to buy time until I can assemble another more functional team (which we will pay for privately). Just hoping this visit created enough of a spark to get some very basics covered while I’m gone.

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