March 26, 2007

The Hearing Voices Network

There is an excellent article in this week's New York Times Sunday Magazine about the Hearing Voices Network, a British group (yes, I am feeling like the paper's publicist today). It's run by patients and focuses on trying to help people who hear voices cope with their situation and benefit from it. HVN, as it's called, is often castigated as being anti-psychiatry and anti-medication, but I think people who do so are missing its point. Many people, diagnosed as schizophrenic or not, hear voices. The question is what do you do with that experience. It's all more complicated than that, of course, but that's the basic gist.

The article's author also goes into various British studies of using CBT to address psychosis. There seems to be an emerging mini-consensus in the UK that CBT is of some use in helping schizophrenics control their voices--or auditory hallucinations--and delusions and of coping with them as well. There's been minimal research on that front in the US. It's time for that to change. It's also time for Aaron T. Beck, CBT's grandfather, to get a Nobel Prize in Medicine.

I was a bit surprised that the author didn't note the efforts of MindFreedom International (and especially its Mad Pride campaign) and others to undertake loosely-analogous work in this country. Either way, it has become clear to me over the last few years that we need a reformation of sorts in how we address schizophrenia and psychosis in American culture. I don't say this as an anti-psychiatrist--because I am not one--but as someone who's come to recognize certain uncomfortable facts.

Antipsychotics aren't working especially well for schizophrenics in addressing their core symptoms and the medications are intolerable for too many people. Intolerable is putting it lightly, of course. What's more, the American psychiatric establishment's embrace of Big Pharma--and its claims that atypicals have effectively treated millions of schizophrenics--makes it impossible for me to accept the voices-are-always-bad, medicate-them-away-always paradigm. It's just not working out and I see this on the streets of Seattle every day.

What's more, the hype around current treatments is that they are so effective that they've allowed hundreds of thousands of schizophrenics--people with schizophrenia or voice-hearers, if you prefer--to leave the nasty old state hospitals in our country for happy lives in the community. In the last 30 years or so, state hospital populations in the US have gone from about 500,000 people to about 50,000 people. The trouble is that many of those people have ended up being discharged to the streets or jails. As hateful as both of those housing options are (this is one place where TAC and I actually agree), many more schizophrenics wind up living their lives in nasty old residential treatment facilities where they are medicated much the same as in state hospitals. Many of these facilities are fire traps, dirty, underfunded and the patients receive poor psychosocial supports. I don't question that the agencies that run these places are trying the best they can in very trying circumstances--the employees aren't paid well yet their compassion is often boundless--but I have been inside enough of these facilities and seen enough of the patients to where I have to question just how much we have gained as a society and how well we are serving people who are in desperate need of our help. I don't see too many of their charges getting well. I am sick and tired of seeing this state of affairs. I am sick and tired of seeing this state of affairs and hearing the powers-that-be call it good and the best we can do. That's bullshit.

I am not calling for a re-opening of state hospitals or anything of the sort. But the current solution, which we've been leaning on very hard for a few decades, just isn't producing the kinds of results patients have a right to expect, especially given the very high price they pay every day with their brains and bodies. We need to be doing something else. Or something elses. And blending these approaches--such as CBT and DBT--with more conventional approaches. I don't even know what such a system would look like, but I know that the early promise of the now-defunct Soteria House in San Jose, Calif. (kind of a big HVN meeting) ought to serve as inducement to trying something other than what we are doing now.

Not long ago, I reached out to some sources of mine in the psych world in Seattle. I know a very high functioning schizophrenic, but like many schizophrenics she doesn't exactly have a peer group. I wondered if these sources knew of any local group of patients she might attend or if they knew of other high functioners I might introduce her too. The answer was "No." In 2007, no one has come up with some way for schizophrenics to hang out together in Seattle and just be together and make sense of their situation. Bizarre. (Yes, I am well-aware of the various "club houses" and such out there, but they'd hardly meet her needs.)

MindFreedom and PsychRights and other groups are very busy trying to get what they consider basic human rights carved into America's mental health system (and those of other nations) and legal system, so I am not sure that they have the resources to take this on. I'm not sure who does. I've heard rumbles of other Soteria kinds of approaches in this country, so if anyone has information on them, please pass it along.

Anyone got any ideas on any of this? Or on HVN?

Thanks to Sara for pointing me to the article on HVN before I'd bumped into it myself.

Posted by Philip Dawdy at March 26, 2007 12:03 AM
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Comments

" I don't even know what such a system would look like, but I know that the early promise of the now-defunct Soteria House in San Jose, Calif. (kind of a big HVN meeting) ought to serve as inducement to trying something other than what we are doing now."

A working community based mental health system would look a lot like what they currently have in Trieste. Soteria's founder, Leon Mosher, was a big fan of how they do things there.

Transcripts from 'All in the Mind' programs on the Hearing Voices Network here and here.

The recipe for providing humane, workable mental health services is pretty simple I think. Start by listening to what the mentally ill say, instead of pathologising it - then add money. I'm no economist, but my gut feeling is that in the end it would also work out cheaper than just letting corporate medicine and its paid stooges call the shots.

Posted by: michael at March 26, 2007 01:46 AM

There was a time when schizophrenia was widely considered treatable with therapy. Jung worked with schizophrenics. And while we can certainly argue that much greater strides have been made since the advent of some of the psychotropic drugs, still at least back then someone was willing to listen and be concerned with what might be possible with these patients.

Most therapists and would be therapists have little or no experience with schizophrenics and have no idea how to work with them. For at least the last 20 years, this population has been seen as a group not amenable to therapy and benefitting only from medication management.

State hospitals began to be closed when I was first put of grad school back in the early 70's. We threw the baby out with the bath water in trying to change the system.

And now, who is there willing to fund any big changes?

A person could get very depressed over al of this.

Posted by: Cheryl Fuller at March 26, 2007 05:54 AM

"I'm no economist, but my gut feeling is that in the end it would also work out cheaper than just letting corporate medicine and its paid stooges call the shots."

I've read a lot about Soteria House, and Mosher, who ran the house claims it was much cheaper than standard care.

I am an absolute believer in projects like Soteria House. People recovered at a much higher rate than in the traditional psychiatric system and medication was rarely used.

Thanks for bringing attention to Soteria House. I just talked about it the other day on my blog.

Posted by: Gianna at March 26, 2007 06:03 AM

Ototoxic drugs

"There are at least 743 drugs that are known to be ototoxic. Here are just 84 of them. This gives an inkling of just how all-pervading ototoxic substances are in the medications we take without having a clue that these drugs may be harming our ears."

medication induced voices

I did quite a lot of research on medication induced voices, as well as phantom noises, talking that people could quite possibly mistake for "hearing voices". Deafness can cause issues in itself, and along with using Ototoxic medications, (Zyprexa, Depakote for example)was an area I did specific research regarding my daughter, who is deaf in one ear as well as at the time taking those 2 medications. It is an area worth invesigating.

I am also not happy with the current services provided for clients living outside of psychiatric hospitals. The residential care facility my daughter was court-ordered to reside in, was not age appropriate, nor are there any programs in the "clubhouse" (make-a craft)drop in day program that are age appropriate for anyone in their teens or 20's.No possible way to make friendships. I was shocked at how flimsy the patient/client services are in the state of Washington, and also, it is very difficult to qualify to be able to utilize those places. It took 3 hours of screening for my daughter to get her foot in the door at one clubhouse, just so she could make a craft for one hour a week. She qualified and declined to go back. It serves a few people and meets their needs, but not a teenage girl needing to make friends.
I find the services to remain focused on medications, and no psychotherapeutic approaches offered. I too would like to see quality care for these people. Some, in the residential care place my daughter resided have retired there.Their day consists of med calls,and trips to Walmart. I saw much potential in those clients, and feel they are not offered more more than what they are getting.
I was shocked at the condition of the place as well. Dorm-room living arrangements, and flooding toilets. AND, it is HARD to get on the list to get a bed there.

Posted by: Stephany at March 26, 2007 09:02 AM

This article is quite interesting regarding community support for mentally ill clients. Here is a very small part of it:

"As a psychiatrist, I had been taught to manage serious mental illnesses with a set of assumptions that if articulated would sound something like this: “People with chronic mental illness are permanently disabled. Medicate them and forget them. They are weak and need to be taken care of. They can’t hold down jobs. They have no significant role to play in society. The possibility of them having a meaningful life is slight. Their prognosis is essentially hopeless.”

The article goes on to discuss recovery, and that it is possible, and is interesting reading based on a psychiatrist's discoveries of limitations placed on patients, and how his views and low expectations of successfully living with a mental illness changed.

I found it to be an inspiring and the name suits it: The Village Integrated Service Agency.

I truly believe in recovery and life in the form of a Village theme; because quite often mentally ill clients have no family or friends, and rely the people around them for support. If the client has a well-balanced support network, that includes finding them jobs, social activities, etc. they will succeed, and in my opinion probably better than just left with medication management alone.

Road to Recovery

I have a 24 year old daughter who was diagnosed bipolar while in college, in another state. She has been extremely successful in her management of her life. She has a psychiatrist, a therapist, and a DBT group she attends all 3 weekly. She also has use of the local support group that takes clients with mental illness to movies, etc. I made one phone call on her behalf, and gave the local mental health agency a list of what she needed. DBT was on that list. They also deemed her pet cat at my suggestion, a therapy cat. This cat has a doctor's note that allows my daughter to live in any apartment with her cat; due to the cat now being deemed a therapy cat. With all of those things in place alongside Lamictal; my daughter was able to remain in her University and live away from her family in another state successfully. She is doing so well, that she has been asked to facilitate a group on "How to become your own advocate.", because her psychiatrist is so impressed with how she has set herself up with her own Village. I am extremely impressed and proud of her.


Posted by: Stephany at March 26, 2007 10:45 AM

I would like to clarify, regarding my 24 year old successfully managing her bipolar disorder with all of those things in place: This was a discharge plan I created for her. She was inpatient after 2 suicide attempts. The hospital discharge plan was medication management only. They placed her on a case management list, and the appointment was constantly rescheduled by the mental health agency.
I called on her behalf as an advocate, and basically reminded them that case management was at the minimum a discharge (plan of success?) from a psych ward.
I then spoke extensively with the director of her agency, and created the "real" discharge plan. DBT, etc was all my request.
Within 24 hours she had that case manager in place (after 30 days had expired already since discharge)and I started the advocate ball rolling for her. She has taken it from there.
My point I need to stress here: One year later, she has not returned to the pscyh hospital. She was able to maintain a very difficult time with a large support system in place, not just medication management that the psych hospital [all typically do]called a "discharge plan".

Posted by: Stephany at March 26, 2007 06:03 PM

Seattle Mental Health mailed a pre- assigned appointment letter to my daughter.

1. They assume she can read, get the mail, and is independent enough to call back with an RSVP of receipt of the letter.

2. "Mandatory appointment necessary to complete paperwork."

3. SMH- she has a neurosurgeon appointment that day.

THIS is what I am talking about in the GAP this state has with case management as discharge plans for recovery.

"It's either home or a hospital." That is what one nurse told me March 2006.

I fear for the clients who have no advocate.

Posted by: Stephany at March 28, 2007 12:15 AM

Something weird is going on with HVN. I read the Times article, and being curious I tried to track down some opposing viewpoints. I can't. Wikipedia offers no "criticisms" section, no website I could find offered even the slightest negative comment. Even on this page, all comments are glowingly positive. I didn't think it was bullshit until now, but whenever I see an organization that appears to control critiques, i wonder how beneficial they really are. Can anyone point to any informational source that provides an opposing viewpoint?

Posted by: Jennifer at March 30, 2007 01:26 PM

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