Dinah, ClinkShrink, & Roy produce Shrink Rap: a blog by Psychiatrists for Psychiatrists, interested bystanders are also welcome. A place to talk; no one has to listen.
Friday, May 20, 2011
Sponsor Shrink Rap for NAMI Walkathon
The National Alliance on Mental Illness is dedicated to improving the lives of individuals and families affected by mental illness, by grassroots advocacy for public health policy and funding that supports awareness, education, and advocacy for mental illness.
So I just realized that the annual NAMI Walks fundraising event in Baltimore is tomorrow morning. While the other shrinkrappers are still having fun and sun in Hawaii, I'll be leading the Shrink Rap team here at home tomorrow morning. Please support NAMI by sponsoring my walk. You'll be supporting a good cause, will feel great after doing it, and maybe even lose weight vicariously! (It's also tax-deductible.) NOTE: you can donate even after the event is over.
Click on the logo above to sponsor, or go to http://www.nami.org/namiwalks11/BAL/drdaviss. I'll be happy to mention your name and/or link if you like in a follow-up thank you post next week (just include your info in the Message To Me window after making your donation). Even $5 will be greatly appreciated!
Thank you,
~Roy
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32 comments:
I was solicited to be a NAMI speaker. When I looked into it I discovered 2 things that made me realize NAMI is not what it presents itself to be. The first is that the majority of support for NAMI comes from Pharmaceutical companies. There is a training program for speakers. The requirement for the presentations as presented in the training is that the speakers must follow this format:
1. I was mentally ill: insert personal story)
2. I was given pharmaceuticals which made me fully functional/normal/capable of living my life again :insert personal story.
3. I continue to take these medications for the rest of my life to control my mental illness: insert story.
The presentations MUST include a turnaround as a result of medications. Do they want you to talk about psychotherapy? Nope. If your "personal story" includes not being on medications at all at the end then you are not a candidate to present for NAMI. NAMI is about supporting the drug companies first and foremost and only incidentally about people. The "people" part is essentially a ruse. The presentations may show that mentally ill people can become fully functional productive, predictable members of society, but first and foremost the speakers are to be walking billboards for the medications they take.
Sunny, my feelings about NAMI as well. Yup, it's all about the meds. Good patients only include those who take meds and say it's saved their lives. They have no use for patients who say they've improved off medication, clearly they weren't really sick or they lack insight into their illness. All patients should have a voice, not just those on meds.
Leslie
I think the provide a valuable service. That being said, they have a reputation of being more oriented towards family members than to patients. They do address more than meds, for example here.
I think Nami is more focus on seeing results of their medications and how well it does for customers so that they can produce more of it to people .. its all about marketing my friend
Walking fish, sometimes called ambulatory fish, is a general term that refers to fish that are able to travel over land for extended periods of time. The term may also be used for some other cases of nonstandard fish locomotion, e.g., when describing fish "walking" along the sea floor.
LOL!
Yes, I would agree that they are more oriented toward family members, unless of course you are a patient singing the praises of medication. My parents attended the family to family program and it caused a lot of problems between us. They scared the crap out of my parents telling them that if I stopped my meds I would die, and on and on. The focus is meds, and they tell parents that if a patient stops meds it's because they are too ill to realize they need the meds that are making them miserable or that they lack insight into their illness.
They scared my parents so much so that when I did make the decision to wean myself off all the medications almost 10 years ago I couldn't tell them (and I could have used their support at that time)- because of all the fear mongering NAMI had done. It's really too bad. They need to tell the other side which is that sometimes meds make patients worse, and some patients do better off of them. If only they had bothered to also share that message, then I wouldn't have had to go through the withdrawal period alone.
Leslie
I believe that NAMI does some good, despite my misgivings about the drug company support too. I read through a BRIDGE program binder, and found several objectionable things in it that they are trying to force feed down patients' throats, and from the way the program read, if patients didn't come to accept these things then they were being unhelpful, obsructive, etc. It made me a little sick.
That said, for anyone who needs help figuring out resources for dealing with their mental illness, and that's alot of people, NAMI is better than nothing, although I'd prefer that people stay out of any of their classes for content problems.
NAMI also does alot of lobbying on Capitol Hill; granted their may be some drug company influence but at least NAMI raises lawmakers' awareness of mental health issues and the need for improvements to many of the laws, programs, etc. that involve this area.
Myself, I was contacted years back by someone from the Depression and Bipolar Support Alliance, DBSA, about starting a chapter in Utah, as there isn't one. Since I highly desire an alternative to NAMI, if I felt capable of doing this, I'd do it, but I don't feel capable.
So anyway I fully support Roy's walk tho with my hubby out of work I can't financially support it. The organization does do good; I went to a support group they had a couple times, and aside from the state NAMI president's daughter tending to take alot of time making sure people knew HER problems were worse than anyone else's, it was actually quite valuable.
What Leslie wrote is true, in that some patients do better without medication. After all, unless one presupposes that all medication is correctly determined in regard to diagnosis, choice, and individual reaction, it must be that there are quite a few people on medications that in balance do not help them or cause side effects that are troublesome and unnecessary.
It is generally a good idea to find a psychiatrist in whom you have trust and listen carefully (not slavishly) to his advice. In general, not always, that will result in better decisions. I do not know exactly how NAMI frames their encouragement but I hope it is nuanced and not absolute. We speak definitively prognostically when it entails generalities and statistics, not when it address an individual patient. In other words, we can say that 30% of patients with a certain diagnosis taking a given medication or receiving a given treatment do better measured by certain criteria than those who do not take it, but that type of statement does not address the way a given individual responds.
Overall, I would say that patients who stop their medication on their own do not do as well as those who take it as prescribed. Every psychiatrist (I think) has seen patients who have stopped their medication and done well. Very well.
It troubles me that NAMI gets a large portion of their funding from drug companies, but does not reveal sources of funding on their website. It describes itself as a grass roots organization. We all know that who pays the piper at least has some increased influence on the tune. However, unless the grassroots is willing to vastly increase its financial contributions, is not better to receive the corporate money than to not?
P.S. it is concerning that NAMI requires a set format including a turnabout from medication in talks from speakers. But it might be related to their lobbying efforts, or that they think destigmatization of mental illness comes best from describing it as a medical condition that does best with medicine. Something a layman or busy legislator can understand.
I wish we could hear from a NAMI official in response to this point. Any following Shrink Rap?
NAMI does list their financial contributions (I think all 501c3's have to). For the first quarter of 2011, they list abotu $1.1M, a bit more than half (~$620k) of that is identified as coming from pharma companies.
They also state that "NAMI does not endorse any specific treatment or service." They do have a policy, or guideline, about business relationships.
I have attended NAMI support groups and been involved in NAMI in various ways (never in an "official" capacity) and never got the perception that the group had a particular idealogical stance that pushed meds. If anything, my experience was that NAMI advocated for "consumers," their families, and the mentally ill as a whole. They advocate for destigmatizing mental illness. I understood them to have a voice in speaking out for those that are mentally ill even at the policy level. The people I encountered through NAMI (speakers I heard, etc.) were some of the most impassioned role models of how you can have a mental illness and still transform your life. The leaders seemed to be people who genuinely cared about mental illness, had personal experience with it, and an interest in empowering and supporting those with it. The support groups I attended were open forums--not any specific format. I got the impression that NAMI is just comprised of people whose one uniting factor is that they care about the mentally ill and have had direct or indirect experience with it.
It doesn't sound like, in some cases anyway, they are following their own policy. They may not be endorsing a specific drug, but they definitely promoted drugs as "the" answer in the program my parents went through, and I have heard that from other people too. Part of the reason for that may be because family members lead the family to family groups and they will naturally come in to the program with their own biases and experiences which probably slants their presentation.
NAMI does do some good thing, and there are a lot of good, well meaning people involved in it. I just wish they didn't promote a one size fits all answer.
Another thing they did that wasn't helpful was to encourage family to send letters to the psychiatrist without the patient's permission or knowledge. That kind of stuff just creates more problems and distrust.
Leslie
"Another thing they did that wasn't helpful was to encourage family to send letters to the psychiatrist without the patient's permission or knowledge. That kind of stuff just creates more problems and distrust."
This happens because psychiatric patients are not considered as full human beings deserving of rights. Any doctor who receives such a letter should clarify with the patient that they gave consent and if not, the doctor should send a form letter to the family telling them unless it is a 911 worthy emergency, he/she will discard any communication that is done without the patient's knowledge.In an emergency only info of immediate relevance should be accepted and no long discussions behind the back of the patient.
Thank you, Roy, for clarifying that. In regard to communications from families to psychiatrists, anyone can send a message to a psychiatrist and the psychiatrist should at least hear the message. Then the psychiatrist should relate that message to the patient, and/or encourage the message-sender to do so. What is absolute is the duty owed by the psychiatrist to the patient, to always act in a manner in the patient's interest. Communications from the patient to the psychiatrist are confidential to the extent that they do not entail plans to harm himself or others.
Yes. Anyone can send a message to a psychiatrist. When it persists behind the back of the patient, it is wrong.
A psychiatrist can say do not send me any more messages that your family member does not know about unless it is an emergency situation.
My approach is to share the info provided with the patient. When a family asks me to "don't tell Sally I told you this", I tell them that I cannot keep secrets from the patient and anything they tell me I will inform the patient of it. But I don't tell them they can't talk to me, only that what they say is shared with the patient.
What about, and this is haring off along the tangent the comments have taken, if you complain about your psychiatrist to the so called friend who hooked the two of you up in the first place, and so she says, because she is his friend in real life, that she'll talk to him for you.
RIGHT there, that is inappropriate, because It's my understanding that the psychiatrist can't acknowledge that you even ARE a patient to this "friend", let alone discuss stuff with them. Granted at this point in my story the shrink has done nothing yet.
So "friend" calls up my psychiatrist, and instead of saying, hey, patient/my friend is feeling like you are way off base/don't listen to her, don't understand her (and thinking back why the hell would I have wanted her to intercede on my behalf with him anyway), instead of doing what she had said she would do, she calls him up and rips me left and right and up and down and vents about supposed behavior of mine that is manipulative, and other things.
When I went in to see him next I was SHOCKED. He told me all this, and then said he agreed with my "friend" who'd called him. I was stunned; I'm NOT manipulative, let alone the other stuff she said! He waved a paper at me and said he'd typed up the gist of the conversation and it was going in my records.
My psychologist, also hooked up with me via this friend, (er, that sounds wrong lol), strongly disagreed with everything the "friend" had told him, as well as the psychiatrist's conclusions. This was my first psychiatrist, and he and my psychologist were if not friends at least friendly with each other and worked together on mutual cases. Anyway, so I knew my psychologist was saying exactly what he thought, he knew me better anyway.
When i eventually went to my social security hearing, in front of a judge, guess what paper regarding that "friend"'s phone call was front and center in the psychiatrist's records?
Gee, do you think it influenced the judge at all? I would think that accusations of being manipulative would . . . false though they were. This should NEVER have become a part of my record. If I thought proving that this might have biased the judge's opinion I might have tried to appeal based on that, but the reason we lost is because they discarded a legitimate, key piece of evidence. And then they made me agree to waive right to appeal if I wanted the pennies of SSI they'd try to get for me.
I was hosed. Sorry for the ramble.
Jesse, you sound like a very reasonable physician. Your patients are lucky to have someone who is willing to look at all options (meds, no meds, or whatever works). I agree that it's critical to choose someone who you can trust, the problem is you don't always know in the beginning if you've chosen well.
Leslie
Anon, I agree the behind the back thing doesn't work. As I told my parents, I love you, but these are my decisions to make and I don't appreciate you doing that without my knowledge.
Roy, I think telling family that you will share with the patient what they have told you is a respectful thing to do. My psychiatrist told me my parents sent a letter expressing concern but he wouldn't tell me what the letter said. I had to set some boundaries with my parents after that.
Leslie
I will call my husband's urologist and ask him if he wants to know how bad the guy's aim is. Or maybe I will just send him a letter.
Then I will the doc who prescribes his insulin and tell him the guy ate a whole tub of ice cream last night.
I will call his boss to let him know that he wasn't really sick last time he called in saying he had the flu.
Are you seriously asking people to donate to your cause? You are three psychiatrists who make well above the national median salary, you've written a book despite having the platform on this blog to describe how the system works in hopes of making money and now you are asking for more money? Obviously I realize this donation would not go to you but can't you just donate for yourself?
Also, it's very telling that you would choose to solicit donations for an shady organization like NAMI.
@Sarebear: sounds unfair.
@Lisa: I think NAMI does good work. I donated $150. And I don't expect to make much money on the book. We priced it very reasonably. I think we each get around 40 cents per book. So I've donated the first 375 books worth to NAMI. If you have another mental health related cause you recommend, I will consider it for my next 375 books (if we even sell that many).
@anon with the urologist: Umm, if that is some kind of metaphor, it went right over my head. (Giving the benefit of the doubt that it's not just a random off-topic comment worthy of deletion.)
Roy,
I am sorry that the urologist comment was not clear. If family members can send messages by mail and other means to the psychiatrists then it is only fair that all specialists take messages from concerned family members. If we are going to discuss patient safety and best interest, how would it be different to report that the diabetic ate a tub of ice cream in one go? Perhaps the urologist needs to know about the bad aim to decide how best to help the patient and of course to help the patients family deal with problem behaviors. So, it was not off topic. You may delete if you wish--it is your blog.
Recently, there have been a couple of tragic encounters between the police and persons with mental illness in my mid-sized city. As a result, the local chief of police announced that the department will create a "registry" where "family and friends" can register their loved ones as "mentally unstable." Names, addresses, etc. Seriously unconstitutional. The local NAMI chapter supports this initiative. 'Nuff said about NAMI, as far as I'm concerned.
Sounds like a wrong approach. How about training the police officers. If someone who appears to be "mentally unstable" comes at you with a pointed stick, perhaps they can do something other than two shots to the chest just because the person didn't drop the stick on their command. A few years ago around here, police shot and killed a woman with bipolar disorder who was brandishing a pair of scissors. Not trying to second guess the police, but... really?
@anon (urologist): I thought there was a connection. Sorry to be dense. I'm sure family members do tattle to other specialists. "She won't take her blood pressure meds; says she feels fine." "He eats a tub of ice cream and says it's no problem, he'll just take more insulin." I'm sure if the aim was bad enough, somebody would be pissed off. ::ducking for cover::
I agree with Roy about better training, but the NMAI-supported approach being pushed here is to register 'em like vicious dogs. Yes, lets have a watch list of people with a psychiatric label, who are accused of no wrongdoing or crime. Right along with registries of the convicted gang members and the convicted sex offenders. All based on the unverified reports of family members and friends. All without any means to notify persons placed on this watch list or to provide such persons with a means to contest the propriety of their placement on this watch list. All without any safeguards against abuse by persons with ulterior motives. And all supported by NAMI. All without any constitutional due process whatsoever. Thanks NAMI! You continue to reveal your true agenda, however inadvertently. I will never support this organization.
Wow, a registry for people to report unstable people. Under the right circumstances anyone can become unstable, let's all sign up and then it will be as useful as a phone book with the entire worlds names. Roy, from what I have seen the police are more volatile than most people with bipolar. Sadly, their aim with a gun is pretty good. too bad they don't think first. The criminalization of mental illness is something the medical profession ought to be speaking out against. Patients sepak out but who listens to patients, to people whose names might be registered?
Police persons are not high on my list. I am not sure they are trainable.
Tattle is a good word. doctors should not be spending time listening to tattling.
I really don't blame the psychiatrist for reading the letter my parents sent, because he may not have even known what it was about until he started reading it.
My issue was more with NAMI for encouraging my parents to treat me as if I were incompetent. After they took that class, then suddenly started acting as if I were a small child. I've always been oriented X 4. I can't stomach seeing adults who are oriented treated like little children, it's nauseating.
I think this is where as a patient you have to set boundaries with your family.
Leslie
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