I'm reading Moby Dick, for the first time, at 41 (I was a math person, gimme a break). Anyway, your writing reminds me of Melville's. "Call me Freddie." I just read the part where he stumbles into a black church by accident while looking for a hotel room (basically page 6), that was hilarious.
I get it, hospitals suck, insurance sucks...that hasn't changed in decades, and probably won't any time soon. So, what's next? Isn't there a rich donor who had BPD/ADHD who can create a treatment center?
I'm just trying to understand what is the next step other than complaining about hospitals & insurance? I feel like we're in the same spot we've been in for decades, who will lead the way forward?
This was a great, informative video. Many people don’t realize that psych patients face screening at every level of care. Where I live, the wait list to see a psychiatrist is about 4 months on average, and so they can afford to be picky about which patients they see. They might reject a potential patient for addiction issues, “undesirable” diagnoses such as Borderline Personality Disorder, medical comorbidities, bad or no insurance, being on disability or seeking disability paperwork, and many other reasons. If you’re under 18 or over 65, you have very few options in the first place.
Inpatient psychiatric hospitals also decline patients all the time, claiming they can't handle certain disorders. Developmental disability, autism, complex medical needs. If the patient presents with any sort of aggression toward others, finding a bed gets much harder. They say they’re not equipped to meet the patient’s needs. “He needs a specialist. He needs xyz facility [that is already full].”
As a result, many patients get stuck in emergency rooms for days while they wait for an inpatient bed at a hospital willing to take them. This puts pressure on emergency rooms and contributes to their dislike of psych patients. It also puts pressure on law enforcement officers who arrive with patients under psych holds--often they must stay with the patient in the emergency room until a bed is found.
There are some efforts to bridge the gap between outpatient care and inpatient hospitalization: Crisis stabilization units, partial hospitalization programs. But in most places, they aren’t adequately funded.
Granted that the American “healthcare” “system” is impossibly difficult to navigate, my family in the Netherlands, who have a clinically depressed teenager, have had almost as much trouble finding help for him. This is a country with allegedly universal health care.
Thanks for this video Freddie. Today happens to be the six year anniversary of a closer family member who died by suicide. She went through all the hoops and still fell through the cracks. So anecdotal though it may be my family saw first hand what a maze it is. Like you say in the video, this doesn't mean that it doesn't work. Just that it's hard. And complicated. Especially here in the US. Like you, we live in NY and none of us realized how hard it was. Unless, as you say, you're rich. Super rich. (We have means but we didn't come close to being able to afford some of the more "concierge" options.)
Anyway, that's all I wanted to say. Thank you. To anyone reading this, yes, get help. And do what you can to get your loved ones help. But it's not easy.
I'm relatively friendly with a homeless guy in my neighborhood who clearly is delusional and ocassionally reaches states of agitation and screams for a good length of time. And I try to chat with him and give him money but to be fully honest, I don't feel competent or comfortable trying to see if he wants to get help. I asked him once what I should do when he was having an episode and he was delusional and just explained his delusion about spirits to me. He did say one really sweet thing which is that the reason he shouts is so other people leave and don't get hurt by the spirits. So this behavior people are harassing him for comes from, in a weird way, his desire to protect people
But genuinely I don't know how to address it because I am fearful of agitating him. I think there is a level on which having a friendly conversation with someone seems to make him feel better but to be honest, I wish I was more equipped to try to get him real and genuine help. It almost feels like I'm paying off my guilt by just giving him cash. I just don't know how I could tell him that the spirits he is shouting at are not real without betraying his trust or agitating him. Wish I did! ANd what you said about that part of the brain still being there is really true. We had a conversation once where we were chatting about his time as a musician and when he went to Vermont (I'm from there) and he was a thoughtful interesting and intelligent guy. But then he slowly started drifting more and more into his ideology / framework he's built up about the spirit war
This is a great video. I have gotten to about 9 mins in and just wanted to comment, I’ve been rejected by therapists too. One in particular a few years ago. My answers weren’t good enough, it was clear she thought I was lying, we were horrified with each other by the end of it and I got a text that night with that message, better off working with someone else. So I sent back something like ok, agree, thank you, and then left an iffy review on Yelp. It was intimate, distant, invasive and disturbing.
Getting medically assessed is scary even for nonmedical things. Also experienced people are retiring and “moving on” quite a bit it seems, my family has had some provider turnover recently.
I can’t imagine going near therapy right now - being prodded, looked at, shamed, asked to change. The “support” comes at the cost of being somehow skinned. I hated stumbling out of the office into the bright light after a session and I wish I’d never pretended it was fine.
If I hit the lottery I might go for the stellate ganglion block. Or even just save for it, it’s a few thousand dollars.
I still bang the drum for EMDR though. I was taking some heavy meds at the time so judged stable enough. It was weird but it helped a lot. I’ve never liked the diabetes metaphor of mental illness. I like the blown-out knee metaphor. May have to wear a brace for the rest of my life. But it correlates better with the experience.
Psychiatrist here. First, this is a very necessary and valuable video and I'm glad you made it. I have worked in inpatient hospital settings and don't think I ever will again for a variety of reasons. The laws about inpatient psychiatric treatment and involuntary commitment vary dramatically from state to state, and in ours every patient is entitled to a hearing within 72 hours of being involuntarily admitted. They also have an opportunity to meet with a public defender before this hearing who represents them at it unless they object (they also get to be present at said hearing). If, however, the patient stipulates to voluntary treatment or says they do not want to meet with the public defender, the attorney bows out.
That said, it is not uncommon in my experience for the public defender (usually one of a handful who work regularly doing this) to maybe not do such a great job of introducing themselves to patients and perhaps being liberal in interpreting what counts as the patient dismissing them. Those who work doing this sort of thing long enough, and generally it is a special kind of lawyer that can do this very long so most of them are veterans, quickly develop a sense of when it would be a good idea for everyone involved to mount a more token defense and when they should really fight hard. When they get the impression that someone really is being detained in a way that is not consistent with the law or the client's best interests they can be real bulldogs.
Any system that depends on a particular individual happening to get a bug up their ass in order to mount an effective defense is obviously deeply flawed.
It is also the case that some of the people who claim they never met with an attorney simply do not remember the man or woman in a suit who came in, tried to talk to them about a hearing, and left when, say, the patient in question began accusing them of being an agent of a Zionist Soviet plot to oppress them or that they had better get the hell out of their room and stop riding their thoughts all the time. Many people who are really acutely psychotic, especially those who are psychotic due to mania, have only hazy recollections of the time they spent in an altered state. I have definitely encountered people who are convinced they were hospitalized just because they were a little too cheerful and people were "butthurt" that they weren't taking things more seriously, when what is documented is that they spent the first three days running up and down the halls singing Disney songs, refusing to wear clothes, and occasionally sexually assaulting staff members.
The middle ground that you mention wanting that is available in some contexts in most areas might be something like an Assertive Community Treatment Team, usually available to chronically ill people who have been hospitalized multiple times in a year. The basic idea is that a full-time team of people including a psychiatrist, nurse, therapists, housing specialists, peer supports, employment specialists, and social workers have a small census (about 100 patients) who everyone works with, who get seen every week without fail by some member of the team, and who have a 24/7 crisis line that they can call. This team will make sure these people get seen by any means necessary and always go out into the community to meet people where they're at. This can mean tracking people down over several days and learning where they hang out to know where they might find them. It can also mean administering someone's long-acting injectable antipsychotic out behind the dumpster at the gas station near their squat. They support in many ways beyond medication though; e.g., they might give someone a ride to the nearest discount store to get winter clothes, or make sure they have transportation to a job interview, or help them fill out housing applications.
This model of course is not helpful for people who high-functioning most of the time and only occasionally need help. Where I am at there are a couple of short-term crisis residential programs that are voluntary and will put you up 3-5 nights. They are unlocked and you do meet with a psychiatrist at some point, but it is not a hospital. It is however something like a refuge. It sounds, Freddie, like you would like to see the return of something like the original ideal of the asylum, that is, a place to which people can withdraw when they are overwhelmed and through various salutary interventions recover to the point that they can return to their lives as needed.
In my state the state hospital system has been dramatically hollowed out and is almost impossible to get admitted to unless you are sentenced there by the courts as part of a not guilty by reason of insanity plea. They are not a place anyone would want to end up and are really the end of the line. The typical stay is measured in months, not days, and some people spend years there.
I have also worked in emergency settings and currently work in outpatient private practice as well as for a community First Episode Psychosis program, and am happy so share observations relevant to your video about those as well, but I feel like I am taking up quite enough space at the moment.
I obviously have no idea what particular medications you are taking, Freddie, but based on the arithmetic you mentioned I have some guesses. While goodrx.com is a great resource for any medication with a generic version available, I don't think any of them could possibly have had a x73 price increase. I'd strongly checking the price at other pharmacy chains, especially pharmacies in grocery stores. There can be some really shocking variation in prices if you call around because the prices are set by opaque negotiations far above the retail level.
Some also possibly relevant assistance programs for anyone on any of these that gets news like you did that their insurance has suddenly stopped meaningfully covering the thing that has worked for them:
Some of my patients have had good experience with programs like nicerx.com . I am not affiliated with them and don't want to endorse them but it is an option to explore.
The reason I never ended up going to med school for psychiatry is exactly what you get at here: the inexpensive and/or most effective medications for a great variety of mental health issues are the same ones I would easily lose my license for prescribing. I can provide/direct others to helpful drugs without a degree, and sadly the pandemic means that I've been doing that for a whole lot more people lately.
Jan 13, 2022·edited Jan 13, 2022Liked by Freddie deBoer
One option that I am recommending to no one but that I have seen/experienced first hand is to use the alcohol and drug detox system as a way in. There you present with a "regular" medical problem that has you in safe lockdown for about a week. Once the detox is done, they will ship you out. The types of places vary widely, but at minimum the doctors there are familiar with psychiatric issues, and you can get some sort of support for follow-up.
Our system sucks, but that approximates the "third way" you mention.
I'm reading Moby Dick, for the first time, at 41 (I was a math person, gimme a break). Anyway, your writing reminds me of Melville's. "Call me Freddie." I just read the part where he stumbles into a black church by accident while looking for a hotel room (basically page 6), that was hilarious.
I get it, hospitals suck, insurance sucks...that hasn't changed in decades, and probably won't any time soon. So, what's next? Isn't there a rich donor who had BPD/ADHD who can create a treatment center?
I'm just trying to understand what is the next step other than complaining about hospitals & insurance? I feel like we're in the same spot we've been in for decades, who will lead the way forward?
This was a great, informative video. Many people don’t realize that psych patients face screening at every level of care. Where I live, the wait list to see a psychiatrist is about 4 months on average, and so they can afford to be picky about which patients they see. They might reject a potential patient for addiction issues, “undesirable” diagnoses such as Borderline Personality Disorder, medical comorbidities, bad or no insurance, being on disability or seeking disability paperwork, and many other reasons. If you’re under 18 or over 65, you have very few options in the first place.
Inpatient psychiatric hospitals also decline patients all the time, claiming they can't handle certain disorders. Developmental disability, autism, complex medical needs. If the patient presents with any sort of aggression toward others, finding a bed gets much harder. They say they’re not equipped to meet the patient’s needs. “He needs a specialist. He needs xyz facility [that is already full].”
As a result, many patients get stuck in emergency rooms for days while they wait for an inpatient bed at a hospital willing to take them. This puts pressure on emergency rooms and contributes to their dislike of psych patients. It also puts pressure on law enforcement officers who arrive with patients under psych holds--often they must stay with the patient in the emergency room until a bed is found.
There are some efforts to bridge the gap between outpatient care and inpatient hospitalization: Crisis stabilization units, partial hospitalization programs. But in most places, they aren’t adequately funded.
Granted that the American “healthcare” “system” is impossibly difficult to navigate, my family in the Netherlands, who have a clinically depressed teenager, have had almost as much trouble finding help for him. This is a country with allegedly universal health care.
Thanks for this video Freddie. Today happens to be the six year anniversary of a closer family member who died by suicide. She went through all the hoops and still fell through the cracks. So anecdotal though it may be my family saw first hand what a maze it is. Like you say in the video, this doesn't mean that it doesn't work. Just that it's hard. And complicated. Especially here in the US. Like you, we live in NY and none of us realized how hard it was. Unless, as you say, you're rich. Super rich. (We have means but we didn't come close to being able to afford some of the more "concierge" options.)
Anyway, that's all I wanted to say. Thank you. To anyone reading this, yes, get help. And do what you can to get your loved ones help. But it's not easy.
I'm relatively friendly with a homeless guy in my neighborhood who clearly is delusional and ocassionally reaches states of agitation and screams for a good length of time. And I try to chat with him and give him money but to be fully honest, I don't feel competent or comfortable trying to see if he wants to get help. I asked him once what I should do when he was having an episode and he was delusional and just explained his delusion about spirits to me. He did say one really sweet thing which is that the reason he shouts is so other people leave and don't get hurt by the spirits. So this behavior people are harassing him for comes from, in a weird way, his desire to protect people
But genuinely I don't know how to address it because I am fearful of agitating him. I think there is a level on which having a friendly conversation with someone seems to make him feel better but to be honest, I wish I was more equipped to try to get him real and genuine help. It almost feels like I'm paying off my guilt by just giving him cash. I just don't know how I could tell him that the spirits he is shouting at are not real without betraying his trust or agitating him. Wish I did! ANd what you said about that part of the brain still being there is really true. We had a conversation once where we were chatting about his time as a musician and when he went to Vermont (I'm from there) and he was a thoughtful interesting and intelligent guy. But then he slowly started drifting more and more into his ideology / framework he's built up about the spirit war
This is a great video. I have gotten to about 9 mins in and just wanted to comment, I’ve been rejected by therapists too. One in particular a few years ago. My answers weren’t good enough, it was clear she thought I was lying, we were horrified with each other by the end of it and I got a text that night with that message, better off working with someone else. So I sent back something like ok, agree, thank you, and then left an iffy review on Yelp. It was intimate, distant, invasive and disturbing.
Getting medically assessed is scary even for nonmedical things. Also experienced people are retiring and “moving on” quite a bit it seems, my family has had some provider turnover recently.
I can’t imagine going near therapy right now - being prodded, looked at, shamed, asked to change. The “support” comes at the cost of being somehow skinned. I hated stumbling out of the office into the bright light after a session and I wish I’d never pretended it was fine.
If I hit the lottery I might go for the stellate ganglion block. Or even just save for it, it’s a few thousand dollars.
I still bang the drum for EMDR though. I was taking some heavy meds at the time so judged stable enough. It was weird but it helped a lot. I’ve never liked the diabetes metaphor of mental illness. I like the blown-out knee metaphor. May have to wear a brace for the rest of my life. But it correlates better with the experience.
The power dynamics of help seeking are very bad.
Psychiatrist here. First, this is a very necessary and valuable video and I'm glad you made it. I have worked in inpatient hospital settings and don't think I ever will again for a variety of reasons. The laws about inpatient psychiatric treatment and involuntary commitment vary dramatically from state to state, and in ours every patient is entitled to a hearing within 72 hours of being involuntarily admitted. They also have an opportunity to meet with a public defender before this hearing who represents them at it unless they object (they also get to be present at said hearing). If, however, the patient stipulates to voluntary treatment or says they do not want to meet with the public defender, the attorney bows out.
That said, it is not uncommon in my experience for the public defender (usually one of a handful who work regularly doing this) to maybe not do such a great job of introducing themselves to patients and perhaps being liberal in interpreting what counts as the patient dismissing them. Those who work doing this sort of thing long enough, and generally it is a special kind of lawyer that can do this very long so most of them are veterans, quickly develop a sense of when it would be a good idea for everyone involved to mount a more token defense and when they should really fight hard. When they get the impression that someone really is being detained in a way that is not consistent with the law or the client's best interests they can be real bulldogs.
Any system that depends on a particular individual happening to get a bug up their ass in order to mount an effective defense is obviously deeply flawed.
It is also the case that some of the people who claim they never met with an attorney simply do not remember the man or woman in a suit who came in, tried to talk to them about a hearing, and left when, say, the patient in question began accusing them of being an agent of a Zionist Soviet plot to oppress them or that they had better get the hell out of their room and stop riding their thoughts all the time. Many people who are really acutely psychotic, especially those who are psychotic due to mania, have only hazy recollections of the time they spent in an altered state. I have definitely encountered people who are convinced they were hospitalized just because they were a little too cheerful and people were "butthurt" that they weren't taking things more seriously, when what is documented is that they spent the first three days running up and down the halls singing Disney songs, refusing to wear clothes, and occasionally sexually assaulting staff members.
The middle ground that you mention wanting that is available in some contexts in most areas might be something like an Assertive Community Treatment Team, usually available to chronically ill people who have been hospitalized multiple times in a year. The basic idea is that a full-time team of people including a psychiatrist, nurse, therapists, housing specialists, peer supports, employment specialists, and social workers have a small census (about 100 patients) who everyone works with, who get seen every week without fail by some member of the team, and who have a 24/7 crisis line that they can call. This team will make sure these people get seen by any means necessary and always go out into the community to meet people where they're at. This can mean tracking people down over several days and learning where they hang out to know where they might find them. It can also mean administering someone's long-acting injectable antipsychotic out behind the dumpster at the gas station near their squat. They support in many ways beyond medication though; e.g., they might give someone a ride to the nearest discount store to get winter clothes, or make sure they have transportation to a job interview, or help them fill out housing applications.
This model of course is not helpful for people who high-functioning most of the time and only occasionally need help. Where I am at there are a couple of short-term crisis residential programs that are voluntary and will put you up 3-5 nights. They are unlocked and you do meet with a psychiatrist at some point, but it is not a hospital. It is however something like a refuge. It sounds, Freddie, like you would like to see the return of something like the original ideal of the asylum, that is, a place to which people can withdraw when they are overwhelmed and through various salutary interventions recover to the point that they can return to their lives as needed.
In my state the state hospital system has been dramatically hollowed out and is almost impossible to get admitted to unless you are sentenced there by the courts as part of a not guilty by reason of insanity plea. They are not a place anyone would want to end up and are really the end of the line. The typical stay is measured in months, not days, and some people spend years there.
I have also worked in emergency settings and currently work in outpatient private practice as well as for a community First Episode Psychosis program, and am happy so share observations relevant to your video about those as well, but I feel like I am taking up quite enough space at the moment.
I obviously have no idea what particular medications you are taking, Freddie, but based on the arithmetic you mentioned I have some guesses. While goodrx.com is a great resource for any medication with a generic version available, I don't think any of them could possibly have had a x73 price increase. I'd strongly checking the price at other pharmacy chains, especially pharmacies in grocery stores. There can be some really shocking variation in prices if you call around because the prices are set by opaque negotiations far above the retail level.
Some also possibly relevant assistance programs for anyone on any of these that gets news like you did that their insurance has suddenly stopped meaningfully covering the thing that has worked for them:
https://www.latuda.com/bpd/latuda-savings-and-support.html (Lurasidone)
https://www.abbvie.com/patients/patient-assistance/program-qualification/vraylar-capsules-program-selection.html (cariprazine)
https://www.intracellulartherapies.com/patient-assistance/ (lumateperone)
https://www.otsukapatientassistance.com/apply-for-yourself (brexpiprazole)
Some of my patients have had good experience with programs like nicerx.com . I am not affiliated with them and don't want to endorse them but it is an option to explore.
The reason I never ended up going to med school for psychiatry is exactly what you get at here: the inexpensive and/or most effective medications for a great variety of mental health issues are the same ones I would easily lose my license for prescribing. I can provide/direct others to helpful drugs without a degree, and sadly the pandemic means that I've been doing that for a whole lot more people lately.
One option that I am recommending to no one but that I have seen/experienced first hand is to use the alcohol and drug detox system as a way in. There you present with a "regular" medical problem that has you in safe lockdown for about a week. Once the detox is done, they will ship you out. The types of places vary widely, but at minimum the doctors there are familiar with psychiatric issues, and you can get some sort of support for follow-up.
Our system sucks, but that approximates the "third way" you mention.
How do you help a stranger having a psychotic episode? (Timestamp 22:45 or so.)
All I can think of is calling the cops. Is that okay?