Tag Archives: Mental health recovery

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SAMHSA sez:

43.7 Million Americans Experienced Mental Illness in 2012

$31 Million Announced To Improve Mental Health Services for Young People

Nearly one in five American adults, or 43.7 million people, experienced a diagnosable mental illness in 2012 according to SAMHSA. These results are consistent with 2011 findings.

[Does anyone else besides me suspect that the reason so many are diagnosed is because of marketing of psycho-pharmacological drugs?]

Top Three Reasons Adults Did Not Get Mental Health Treatment in 2012

  • They worried about affording the cost.
  • They thought they could handle the problem without treatment.
  • They did not know where to receive services.

“The President and Vice President have made clear that mental illness should no longer be treated by our society—or covered by insurance companies—differently from other illnesses,” said HHS Secretary Kathleen Sebelius. “The Affordable Care Act and new parity protections are expanding mental and substance use disorder benefits for 62 million Americans. This historic expansion will help make treatment more affordable and accessible.”

Related note (click to read whole article):

The British drug maker GlaxoSmithKline will no longer pay doctors to promote its products and will stop tying compensation of sales representatives to the number of prescriptions doctors write, its chief executive said Monday, effectively ending two common industry practices that critics have long assailed as troublesome conflicts of interest.

Caught Nuzzling Mic

Another news item:

On December 12, 2013, Congressman Tim Murphy (R-PA) introduced the “Helping Families in Mental Health Crisis Act of 2013”. While the National Federation of Families for Children’s Mental Health applauds Congressman Murphy’s inclusion of provisions that would reauthorize the Mental Health First Aid Act (S.153/H.R.274), the Garrett Lee Smith Memorial Act (S.116/H.R.2734), the Children’s Recovery from Trauma Act (S.380), the Excellence in Mental Health Act (S.264/H.R.1263), the Justice and Mental Health Collaboration Act of 2013 (MIOTCRA;S. 162/H.R.401) and the Behavioral Health IT Act (S.1517, S.1685/H.R.2057), we decry provisions that would effectively reverse the progress made in mental health treatment and support over the past 30 years.

For decades, organizations such as the National Federation of Families for Children’s Mental Health have been working to add a more balanced approach to mental health services and treatment. The National Federation advocates for the rights of children, youth and young adults who experience mental health challenges. As family members, we feel it is important that our loved ones are able to receive the support they need while remaining at home and in the community. We realize that mental illness does not affect just one person, it is something that the entire family experiences; therefore, it is crucial that initiatives are in place to support the entire family unit.

Rep. Murphy’s bill magnifies the stigma of mental illness by creating an extremely biased link between mental illness and violence. Countless studies have determined that the relationship between mental illness and violence is minimal and that individuals experiencing mental health challenges are 11 times more likely to be the victims of violence than the general public.

The National Federation rejects the expanded use of involuntary outpatient commitment (IOC) and urges Congress to champion practices proven to be effective in facilitating a holistic approach to treatments and supports for children and youth who are experiencing mental health challenges and their families.

Finally, the National Federation strongly opposes legislation that threatens to essentially dismantle key efforts and programs of the Substance Abuse and Mental Health Services Administration (SAMHSA) which functions as the lead public health agency dedicated to mental health and addiction treatment, services, and supports. Transferring authority away from SAMHSA and decimating significant activities within the Department of Health and Human Services are not in the best interest of our most vulnerable citizens who are striving to be participating members of their communities.

The details in this bill reflect the continued, urgent need for a national conversation with individuals who experience mental illness, their families, and their communities to facilitate the creation of systems and networks that support maximal health, safety, and welfare for all community members. We urge Congressional leaders to take this opportunity to create legislation on behalf of their constituents that solidifies a bond among all stakeholders that highlights the dignity, respect, and self-determination of all individuals.

The National Federation of Families for Children’s Mental Health issued this statement in response to the bill.

Cat Bowling

More old Cuckoo’s Nest poetry by JN:

01-30-2009AD

5:20pm

Spoken Cold-Mountain

 [I had given him a copy of Cold Mountain Poems and this was his reply]

Breeze is cold, wet and fresh

Unknown writer I read his writing

Chilled the soul to touch his spirit

Vast as the array of description

Oneness not disconnected was He

Truth in the sporadic words- adrift the snow

Cliffs for bed softened his head

Reading the stone carved wit

Closer to the mountain I get

As I thought those rolling weeds in the wind

Climate is cold to touch, but normal for the universe

Who is wittier?

Mother Nature or the man who wrote?

Void isn’t the mountain with minerals galore

Treasures of the mind I must find

Breaking illusions is for me

This is my trail to this mountain

Entering meditation is salvation

A bird and animal not to sight!

Vast self to roam

Free indeed is the writer in me

Wrote a letter to karma

Issued a food through the threshold

Moonlight glistening snow winds I see

Cold-Mountain: we’re all alone, so it spoke these words

You are home sparkled the stream of life

Years ago I would not have stayed

Fleshy thing in the way

Ghosts are the host that talks wisdom to thee

By JN

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News from the Cuckoo’s Nest

One-Flew-Over-the-Cuckoo-s-Nest

We got a look at a new report today. The hospital is all about hiring consultants and then systemically ignoring what they tell us. Our latest visit was from Dr. Ragins of MHA-LA.

I suspected we would never see a non-redacted version of his recommendations but I’ve been proven wrong.

Here it is, along with a older report he did as a pdf link. I’ve also included the introductory letter from our CMO, Dr. Rupert Goetz.

December 6, 2013

 

To:                          All affected staff

 

From:                    Rupert Goetz, MD

 

Subject:               Attached Consultative Report

 

 

 

As we move into this biennium, one of the changes we are pursuing is to strengthen our understanding of “Recovery” at OSH. Hope, Safety and Recovery are after all the three core concepts in our Vision Statement.

In strengthening our understanding, we want to build on our past (remember the collaboration between Dean Brooks and Maxwell Jones around the Therapeutic Community concept; remember more recently the visit by Sandra Bloom around the Sanctuary Model). But primarily, we want to look forward. We want to look at the many ways we can grow together. For example, we also want to better understand how peer-delivered services can help us build our desired culture.

To that end, I asked Mark Ragins, M.D., who has for years helped implement the recovery model at The Village in California, to visit with us and share his thoughts. Attached is his report.

The purpose of the visit and of sharing the report is to provide us with an outside perspective. While we want to honor our past, as well as our many current internal champions, we want to creatively plan our path forward together. This additional perspective is intended to help us do so.

There are minor details such as the “not guilty” reference (it is in Oregon “guilty except for insanity”) that we might want to quibble with. There may also be the assumption that this is the blueprint for our work in the coming year – it is not. I hope rather that you find it a thought-provoking place to begin our conversation about how we strengthen recovery at OSH.

 

 

 

 

 

 

Oregon State Hospital Recovery Transformation Consultation Report

Mark Ragins, MD

 

 

 

Acknowledgements:

 

I want to thank the Oregon State Hospital for welcoming me to share your work and your lives with me. A friend of mine defines welcoming as “opening a space in your life for a guest to feel comfortable and opening yourself up to them, knowing full well your guest may change you in unexpected ways.”  I have felt truly welcomed by you.  I hope I have been a good guest.

This report is not meant to be an expert, authoritative evaluation and orders for you.  Recovery transformation is a complex problem and complex problems are not solved by outsiders or by definitive answers. Successful transformation is an evolving, collaborative process that never ends.  At best my influence can by to support, nurture, inspire, instruct, guide, and share your organic process of growth. The explorations, observations, thoughts, and suggestions I’m writing here are just the current iteration of my evolving reactions.

I have attached a large volume of reference material from our work at MHALA and the Village. These are not meant to be blueprints for you to replicate the Village or even an instruction book for you to build your own program.  They are concrete, real world, useful tools we have evolved in our own process that may inspire your imagination of what possibilities you might pursue. Remember that they have evolved over decades of work at MHALA and the Village…and we’re not slow learners; we’re aggressive innovators.

 

A note on language in this report: The words I most commonly heard you use to describe the people you serve were patient and client. There was widespread distaste for the word inmate. In other places I’ve seen people also called residents, guests, members, students, consumers, people in recovery, etc. It’s likely that each of those words would be an accurate description of roles people have experienced along the way.  There is a considerable power in the words we choose and how they reflect our mission and values. Your choice has evolved and may evolve further.  I will use patient and client interchangeably in this report to “meet you where you are”.

 

Recovery and the Oregon State Hospital:

 

For me the initial overriding question for this consultation was “Is it possible to use recovery as an overarching philosophy and approach at a place like OSH?” Recovery emphasizes concepts like empowerment, self determination, self responsibility, and community integration. The patients at OSH have been specifically selected for people who are unsafe, untrustworthy, incompetent to be held self

 

responsible, and who have been forcibly excluded from community life.  Even for a true believer in recovery and strong advocate like me that seems a difficult challenge.

Can people at OSH actually recover? Over my few days at OSH I saw several things that impressed me that the answer is yes. Firstly, the enormous majority of people at OSH will be living free from restriction in our community at some point in the future. Their day-to-day reality at OSH emphasizes risk assessment, confinement and restriction. But if we take the long view, the vast majority of people realistically should be preparing for freedom, not ongoing confinement.  Second, the long term staff I met were all hopeful for the clients they’re working with.  They believe things will get better for them. Third, and probably most importantly, there were widespread examples of patients at all points in their journey who are making progress and recovering. These ranged from someone who was soothing himself with a guitar to reduce his assaultiveness and seclusion from every day to a few times a week to a young man doing Calculus homework for his online college class who has been approved for discharge to a group home hoping to continue his studies on campus. Whether you describe yourselves in recovery terms or not, recovery is happening at OSH now.

For recovery to be a pervasive culture, the wide range of hopes, dreams, and personal journeys of each patient’s recovery need to be unified into a shared collaborative vision and destination. My proposal is: People living at OSH are engaged in a hopeful, healing journey towards freedom, safety, and self responsibility. I believe that those three characteristics of the destination – freedom, safety, and self responsibility – are all mutually interdependent.  None can be sustained independently without the other two. Whichever of the three are not addressed and achieved will ultimately drag down the other two. I believe that vision of recovery can be applied throughout OSH.

My next concern about implementing recovery was “Is it possible for the staff to have relationships with the clients that regularly support and facilitate their recovery?”

The clients at OSH are in a strange, awkward moral place where society has rejected them without convicting them of any crime. The staff must be “abnormal in a certain special way” in order to reach out supportively to people who have been cut off and exiled by our society.  To create a “counterculture of acceptance” at OSH staff must be consistently accepting of them. It seems as though the majority of your staff is already there.

It would be helpful to have a unifying “moral stance” regarding the clients that everyone accepts. I would propose: These people have been determined not to be guilty, bad people who should be punished, but rather incapable people who should be supported to become capable again.  This stance is consistent with the recovery vision above. Staff who become punitive instead would need to be sanctioned. It would also be helpful to include the ability to accept your clients on that basis as part of your recruitment, hiring, orientation, training, and retention.

The other serious obstacle to forming recovery relationships is the danger staff are in because of the patients’ violence and the fear the staff feel as a result.  It is extremely difficult to collaborate with and empower someone we’re frightened of. A good deal of the staff seem to have embraced trauma

 

informed care as a tool for reducing fear, conflict, power struggles, and actual danger.  This should become universal.

Beyond that, the most impressive thing I saw at OSH was the innovative and exemplary practice on a very dangerous unit:  They have come together as an amazingly unified team, using a detailed, highly individualized “engagement” tool that assesses each person’s dangerous behaviors including their triggers, warning signs, helpful relationships, self soothing and care combined with a DBT approach.  The staff never give up and continue to seek out creative approaches for each person gaining administrative approval when exceptions to policy need to be made. They appear to have drastically reduced the dangerousness on the ward.  Beyond that, even though there continue to be assaults and seclusion and restraints, the staff feel safe and are allied with the clients.  This is a remarkable accomplishment that should be analyzed, replicated, rewarded, and treasured.  I believe that if it can be done widely alongside trauma informed care, it can get you through the fear barrier to recovery relationships.

I think more work could be done proactively and on an ongoing basis to keep staff from becoming too fearful and traumatized. Your staff have to have the resilience to feel safe even though they’ve been assaulted and likely will again. They may need to be selected for that trait (from a variety of experiences). They need support when they’re weakened and need recharging. They need each other most of all. Toughing it out alone or feeling trapped with a certain patient or unit are both likely to lead to burnout. Ongoing attention to staff nurturance to avoid fearfulness is essential.

My conclusion is that – with ongoing support and emphasis –  enough hope, acceptance, alongside enough avoidance of fearfulness and punitiveness could be maintained to have recovery relationships throughout OSH.

 

What advantages would recovery likely have at OSH that would make it worth the effort?

 

  • Integration of services:  There is a dazzling array of services at OSH ranging from psychiatric medications, to external controls, to sex offender therapy, to art and music therapy, to supported employment, to peer advocacy and bridging, to access to a legal library, to discharge resource development, to an Empowerment center, to yoga and mindfulness, to anger management and substance abuse groups, to Basketball and a woodwork workshop, etc. Although there are some team meetings and a coordination plan much of what is done is not integrated together.  A recovery focus brings the utility of each activity into focus: Does this activity move the person closer to freedom, safety, and self-responsibility from where they are now?  There is far less need for power struggles and hierarchies to determine whose work gets priority if you’re all in alliance working on the same goals in the same direction. It would also be clearer to the patient how everything fits together to benefit them.
  • Decreasing “staff vs. patient” conflicts:  Recovery emphasizes collaboration, shared decision making, and empowerment rather than compliance, informed consent, and professional authority. Those differences radically reduce conflict. Safety would likely be improved for both staff and patients as a result.
    • Decreased staff burnout and increased satisfaction: One of the most powerful factors behind the spread of recovery is how much staff prefer it once they are doing it openly and together and confidently compared to their previous work. At bottom, recovery feeds our hearts more than standard treatment does.
    • Alliance between administration and staff: if administration embraces and adopts recovery practices for themselves in addition to prescribing it for their line staff the entire program works more synergistically.
    • Improved community advocacy: When community advocacy is based on fear and “demonizing” our patients we can get extra money, but we badly decrease community welcoming and reintegration for our patients.  When community advocacy is based upon recovery, we can ally with our patients, and we have a foundation for promoting community welcoming and reintegration. Telling stories of patients achieving safety, freedom, and self responsibility are far more likely to help them be accepted than billboards of staff injuries at the hands of dangerous, frightening patients.
    • Protection against slipping into dehumanized, punitive, coercive relationships:  Any program that is involuntary, locked, and largely hidden from society is prone to slip into increasingly dehumanized, punitive, relationships and from there into overt abuse. Power is corrupting.  A recovery culture can provide a counterinfluence to these destructive trends.

 

 

Recovery   implementation:

 

Recovery is primarily a treatment culture. It emphasizes less what is done and more how and why it is done. Therefore, implementing recovery is a prolonged, organically evolving, complex process.  It needs to be tended and nurtured like a farmer does, not blueprinted and built like an engineer does.  Take  your time.  Be gentle to the land and be a good farmer:  Till the soil to prepare it, help pick out seeds and pay for them, plant alongside the staff and clients, fertilize and nurture seedlings, pull out weeds (but  not with widespread poisons),  rotate crops to avoid exhaustion, and celebrate the harvests together.

There are many recovery principles and practices – like “client-driven” or managing relationships during times of transition to promote growth and self responsibility or strengths based community advocacy – that require years to explore and master. Be patient. Here’s a link to something I wrote to comfort and guide transformational leaders:  http://mhavillage.squarespace.com/storage/69KeepingPerspectiveandStayingSane.pdf.

 

The land can be plowed by mapping recovery. There are a number of “maps” of recovery to adopt from, but you should create your own and it should be very specific to your clients’ journeys. Years ago I created a four stage “map” for the Village based on the work of Elizabeth Kubler-Ross that includes four stages– hope, empowerment, self-responsibility, and achieving meaningful roles.  http://mhavillage.squarespace.com/storage/08ARoadtoRecovery.pdf  is a link to my short book “A Road to Recovery” that describes this map using lots of stories and learning from our direct experiences at the Village.

 

Your map could include stages like:

 

  • Being involved in a tragic, socially forbidden action,
  • being determined to be incapable of self responsibility and punishment and referred to OSH to rebuild capability,
  • being faced with unwanted external control and coercion,
  • being stuck in resentment and rebellion,
  • resisting change and trying to “fake it to evade it”,
  • feeling ongoing pressure for internal change,
  • demoralization and giving up,
  • maladaptation to living in the institution,
  • having seeds of trust and collaboration with staff to try to rebuild,
  • prolonged internal self-evaluation and skill building in a variety of ways,
    • repeated cycles of failing to do enough to be released,
  • achieving release status but no community opportunities or resources,
  • being released and facing ongoing coercion and control and community rejection,
    • returning to unsafe behaviors and environments,
    • achieving full freedom, safety, and self responsibility.

 

It is essential that this map be from the clients’ point of view to be a recovery map.  (If it’s from the staff’s point of view it’s a treatment map, not a recovery map.)  The “gold standard” is that the clients can recognize themselves and their journeys on the map.  Make every effort to amplify the clients’ voice and experience.  Embellish the map with client stories, artwork, music, video, poetry, etc.   Here’s a link to a touching example of a video created by a group of consumers in Porterville, California:  http://www.youtube.com/watch?v=uH9gV_7jmiQs.

 

You can gain some cultural depth by connecting the map to other human journeys (like achieving death with dignity, Joseph Campbell’s hero’s journey, 12 step journeys, or other recovery narratives, etc.)

You can also gain some spread of this map from just applying to clients to applying to everyone by creating a narrative of the recovery process OSH has experienced going through the same stages as the clients. It almost seems uncanny to me how closely these stages describe the last few years at OSH. MHALA applied the same four stages our members go through to what staff go through when we structured our Recovery Oriented Supervision trainings to emphasize that we need to treat our staff the way we want them to treat our clients.

Your recovery map can then be a direct guide for determining how staff relationships facilitate or hinder recovery at each stage, how services should be organized and integrated “meeting clients where they are at”.  A standard for valuing staff and services becomes “How does this promote your client’s recovery?” rather than which staff has more power or influence within the system or hierarchy. This also makes the resolution more often “and” rather than “or” valuing each staff and service for their strengths and figuring out how they can work together instead of competing against each other. (For example, a team with a united front demonstrating a “show of force” standing behind an individual staff with a soothing relationship trying to help an aggressive client problem solve and re-establish self

 

control can work together without either one being “wrong”.)  It should be possible to promote efforts that strengthen people without weakening someone else.

The Village found that our treatment principles mapped directly onto our four stages map too (see attachment 1).  Notice how precisely stated and focused our principles are. You may have staff that are good at developing clear treatment principles that apply across OSH defining the “beliefs” that underlie your evolving recovery culture.

Administratively, you want to develop parameters to guide staff as they develop individualized recovery relationships rather than highly prescriptive policies, especially avoiding pervasive “thou shalt not” policies that “straightjacket” them. This link has a set of parameters that the LA County Department of Mental Health developed and adopted with our assistance:  http://mhavillage.squarespace.com/storage/82NewRulesforStafftoWorkBy.pdf.

 

OSH staff expressed a lot of change fatigue and burnout. My overall impression is that there are more people who think there have been too many changes, especially administratively engineered changes, than people who think that OSH is stagnant at present. Top down engineered changes engender more change fatigue and resistance than bottom up, organically emerging changes.  Except for three pointed exceptions I’ll describe below, I would recommend cultivating currently emerging changes instead of directing new mandates. (For example, after I visited a state hospital in Provo, Utah each staff member made a large cutout of a helping hand with one thing they would do differently to support hope, empowerment, self responsibility, or meaningful roles and then the patients responded by each of them making a large cutout of a foot with one thing they would do to walk a path with more hope, empowerment, self responsibility, and meaningful roles.  A lot of excitement and empowerment was generated there by this approach.)

 

Promising examples of emerging changes I heard about at OSH included:

 

  • Trauma informed approaches to reducing seclusion and restraint and increasing self control
  • Team based integrated engagement and DBT approaches to reducing aggression and assault
  • Creating more “nimble teams” that could rapidly solidify trust even with staff movement and turnover
  • Enhancing peer support services
  • Specialized ethnic and sexual orientation specific peer support
  • Using music recording to explore personal growth and create positive roles
  • Using yoga to address trauma wounds and healing in non-verbal ways
  • Create a robust family and community volunteer presence in the treatment malls to increase community connections and acceptance
  • Create a client key card system so that increase privileges and self responsibility are directly connected with increased freedom of movement around OSH. (BTW I saw this done successfully in that same state hospital in Provo Utah)
  • Openly discuss and develop parameters for including positive, permissible sexual activities including dating, hugging, dancing together, and conjugal visits.
  • Increase peer bridging to peer run organizations n the community to increase community supports and connections upon initial release from OSH
  • Creating a newsletter with stories of hope and recovery

 

 

I’m sure there are many more seeds and saplings of ideas around that need nurturance.

 

Hope requires a lot of consistent nurturance built into your program or we end up focusing on the crises of the day and the things that go wrong. ( Examples of hopeful rituals include beginning team meetings with stories of hope, regular celebrations, special staff acknowledgments and rewards, etc.) Too many policies are made to make sure one serious incident “never happens again” instead of strengthening us so when something tragic happens, and it inevitably will, we’re able to continue on.

The three area in which I would recommend you do serious course corrections (or to use our sailing metaphor, three places where I think you should tack – including communicating the need for a course change, micromanagement of the course change, and bringing people together to handle the change as a team) are: 1) personal dedicated recovery relationships, 2) peer support services, and 3) board hearings.

 

1)      Personal dedicated recovery relationships:

 

Your present system tries to ensure that everything is in place to facilitate someone’s recovery.  They have written goals and a recovery treatment plan. They have the availability of a wide variety of supports and services which they are scheduled into. And they have clear objective assessments to prepare them for hearings and release.  What they don’t always have is a trusting, collaborative relationship with a single dedicated staff to guide them through the process. This staff also needs to guide them through the internal process of recovery – engagement, motivational enhancement, commitment, dealing with grief and loss, internalizing skill building and role changes, moral development, building self responsibility and self reliance, preparing for discharge and community belonging.

I strongly prefer a “therapist case manager” model to a “broker case management” model for this primary relationship so that the internal and external processes of recovery can be integrated. At the Village we call this person a “Personal Service Coordinator” and have adopted Kansas University’s “strengths based case management” model.

I fear that implementing a PSC model at OSH will require substantial top-down structural reorganization, precisely of the kind resented by your staff and causing change fatigue and burnout.  Nonetheless, I think it’s a crucial course correction.

This is an opportunity to emphasize some of the more personal aspects of recovery relationships instead of making administrative assignments: Which staff is the best personal fit for this patient? Who has the most hope? Who has the least fear? Who has personal life experiences that enable them to connect to this person and inspire them? Who is strongest at the particular phase of recovery this person is in?

Client empowerment can also be overtly included: Who do you want to work with? Who do you trust

 

the most? The Village even has “open enrollment” periods every six months when our members can switch PSCs or teams within the same level of care without needing to give a justification.

2)      Peer support services:

 

There comes a point in the development of peer services when they need to move from being “angry outsider advocates” to “collaborative, insider reformers” to move forwards. As the walls keeping the patients’ voice silenced are lowered, other voices besides aggressive, antagonistic, self righteous voices can be heard. This is a disorienting time for peer advocates. The traits that have been absolutely essential to lowering those walls and bringing about change, that have been nothing less than heroic, are now being criticized and blamed for not being able to progress further. Newer peer staff may not respect their contribution and what they’ve been through so they could have a voice. These experienced peer advocates may not even agree that there has been substantial progress or that the walls have been lowered. They may fear a “trick” to weaken them or co-opt them.   And sometimes they will be right.

But at other times, when the swords are put down, there is a flourishing of other voices and relationships. Sometimes a Nelson Mandela emerges from the fight instead of dying on the battle field like Che Guevara did. Sometimes unions that were regularly striking and being repressed engage in collective bargaining or even shared ownership.

In my opinion, OSH has made enough progress to try to put the swords down. I would recommend substantially increasing the number of peer staff, while substantially decreasing their adversarial “peer advocacy” in favor of collaborative “peer support” services.

Making that course correction will likely be quite difficult. In my experience in other places what usually happens is that some of the most valued and successful long term peer advocates end up removed or reassigned out of the mainstream to move forwards. That seems a shame to me and I don’t know that it’s the only possible strategy.  It does however, open the door for a wider acceptance of, and integration of the other peer supporters with the treatment teams improving the patients’ recovery services directly.

At OSH there is a legal restrictiveness that exists side by side with the clinical services that is very important. This brings up the possibility that some of the most valued, but most dedicated to advocacy, peer staff could be moved into a new robust “peer advocacy” department and separated from the “peer support” department that would become co-supervised by the teams and by peers.  I don’t know if that’s been done in other forensic settings.  If the peer advocacy service was robust and respected enough it could be a valuable “check and balance” against the corruption of power and coercion that is an ever present risk in involuntary, locked settings.

I would advise having a small team of clients, staff, peers, and administration charged with developing a plan to move to a larger peer staff that is no longer emphasizing advocacy. They should seek out guidance from other exemplary peer services. I’ve been exposed to successful programs at Recovery Innovations, Riverside County and Tulare County in California, and King’s County Hospital in Brooklyn.

 

NAPS (National Association of Peer Specialists) can probably point you towards further resources. The team would be expected to inform and guide the process of changing course, but the course itself wouldn’t be negotiable.

In my view, the main emphasis at this point in your development is not to accentuate the differences between clients and staff but instead to blur those differences. Justice and righteousness are less crucial than trust and reconciliation.   Desegregation, power sharing, collaboration, mutual respect, inclusion, and interdependence would be my points of focus. Towards that end I would hire more “blurred people” – both peer staff who have professional skills and degrees and probably more importantly, professional and para-professional staff that have lived experience of mental illnesses.  In addition we need to remember that there are a substantial number of staff who are currently hiding their lived experience out of fear.  That is a terrible burden on them and deprives the patients of a considerable source of support and hope.  Those staff shouldn’t have to take sides. They should be proud of both their personal and professional gifts and be able to use them without fear.

 

3)      Board hearings:

 

Although there have been changes in these hearings recently, they are still clearly the cause of major distress, antagonism, hopelessness, and divisiveness. A patient complained that they are arbitrary and unpredictable, often not following the clinical input of the staff, leading him to withdraw and give up in helplessness. A psychiatrist said that he pisses off the public defenders, the district attorneys, and the hearing officers about equally so he must be doing something right. Frankly, that doesn’t’ sound like a collaborative relationship either.

Over the last decade there have been substantial innovations within mental health legal hearings. There are mental health courts and drug courts scattered around where the hearing officer has a personal relationship with the client and actively participates in their recovery: They engage and motivate clients. They grieve and celebrate with clients. They mediate between staff and clients working to improve their collaboration. They actively secure community resources and services for clients. They even hug clients.  I am aware of an exemplary court and judge in Nevada County, California who handles the involuntary outpatient commitments (Laura’s Law AOT).  The Elyn Saks institute at USC is connected with a large number of resources who could inspire and guide you.

I realize that this recommendation is beyond the scope of my consultation and expertise, but I think these hearings could become a major force promoting recovery – especially as defined by freedom, safety, and self responsibility.

 

Recovery  Accountability:

 

Recovery sometimes seems so nebulous that it can’t be measured or promoted in an accountable manner. This argument maintains that it’s too non-specific, too subjective, too individualized to quantify or track.  Either you have it or you don’t.  I don’t agree.

 

Broadly speaking there are three areas to try to create accountability:  1) Recovery service provision, 2) recovery outcomes, and 3) recovery culture.  There will always be a tension between the accuracy and detail of the measurements in the accountability tool and the burden it places on clients and staff.  (The Mental Health Center of Denver is very sophisticated in their use of data driven management and accountability.)

 

1)      Recovery Service Provision

 

This is the most common way mental health services are held accountable:  Are we providing the services we’re supposed to in sufficient amounts.  In many parts of the system our payments are directly tied to service provision.  It is also the weakest way to assess accountability. There’s no way of knowing if a service is being provided well or not, effectively or not, compassionately or not, etc. All we know is that, at least on paper, someone did something.

 

Recovery services can be described and counted as well as traditional psychiatric or rehabilitation services.  I attached a list of recovery service areas that MHALA uses (attachment 2).  These are included in our EHR alongside the medical service codes.

 

2)      Recovery outcomes

 

It would be nice to know if we’re actually helping people recovery. We can track outcomes that are desirable whether they resulted from recovery or not, and we can track correlates of the recovery process.

California’s statewide AB2034 program that enrolled people who “deinstitutionalization failed” had four targeted outcomes:  Psychiatric hospital days, incarceration days, homeless days, and employment days. The 70% reduction in hospitals, jails, and homelessness alongside a 400% increase in employment days were powerful outcomes for California’s legislature and Governor Schwartzneger.  These four outcomes were specifically chosen to monitor the outcomes society had assigned to us and are relatively easy to track reliably. You could make a small set of similarly targeted outcomes, for example, reduced  incidents of assault or other violence, increased incidence of competency restoration at hearings, employment earnings within the hospital, increase in board approved discharges to lower levels of community care, etc.

MHALA didn’t feel that the variables on our four stage map of recovery (hope, empowerment, self- responsibility, and meaningful roles) would be reasonably measurable to track recovery although they successfully captured subjective experiences of recovery. We created a tool that is uses staff ratings to track individual’s progress through recovery using three correlates of recovery – risk, engagement with mental health services, and skills and supports. This link has the eight point Milestones of Recovery Scale (MORS) and describes its development, validation, and use:  http://mhavillage.squarespace.com/storage/84AGuidetotheMORS.pdf.

 

You could create a similar tool using the three most crucial outcome dimensions for your program – safety, freedom, and self-responsibility to define stages you could track people through; for example

 

stages like extreme danger, high external restriction, low internal control and self responsibility. Remember that the map shouldn’t be linear and should include forward and backward movements to realistically map recovery.

 

3)      Recovery culture

 

On the face of it, culture is the most difficult thing to measure. MHALA has developed a tool for adult community based mental health programs that begins with seven core valued dimensions of a recovery culture and then describes concrete indicators of whether the program is doing nothing, exploring, emerging, maturing, or excelling in each area.  This link  http://mhavillage.squarespace.com/storage/87ARecoveryCultureProgressReport.pdf  has the Recovery Culture Progress Report and a discussion of its rationale, development and usage.  Note how each domain flows from a value statement. You could develop a tool like this for your own program.

 

Conclusion:

 

The same friend of mine I began with said that for hope to be useful it has to include three elements: 1) A vision of where you’re aspiring to get to that is clear and specific enough to become believable (not that you ever get to exactly where you imagined or hoped for), 2) A commitment to take a few concrete steps that lead towards your vision (and see what happens), and 3) Enough passion and understanding of why this vision is important enough to you that you’re resilient enough to make it through the inevitable blockades and setbacks.

 

I think you have enough useful hope to achieve recovery transformation at OSH. Thank you for including me in your journey.

 

 

WE BELIEVE…

MHAVillageGuidingPrinciples and the Stages of Recovery

 

 

  1. Hope makes recovery possible; it facilitates healing of the mind, body and spirit.

 

 

  1. Welcoming people includes creating a culture of acceptance with easily accessible integrated supports and services.

 

 

  1. Focusing on the whole person includes their strengths and weakness, abilities and barriers, wounds and gifts.

 

 

  1. Each person creates their path and determines the pace of their recovery.

 

 

  1. The recovery process is a collaborative journey in support of individuals pursuing their life goals.

 

 

  1. Relationships are developed through mutual respect and reciprocity, including openness to genuine emotional connections.

 

 

 

  1. A solid foundation for recovery is built by helping people to honestly and responsibly deal with their mental illness, substance abuse and emotional difficulties.

 

 

  1. People thrive, grow and gain the courage to seek change in respectful environments that promote self responsibility.

 

 

  1. The practical work of recovery takes place in the community.

 

 

  1. Each person has the right to fair and just treatment in their community ensured through advocacy and social responsibility.

 

 

  1. Everyone deserves the opportunity to have a place to call home.

 

 

  1. Promoting natural supports, having fun and a sense of belonging enhances quality of life.

 

 

  1. Employment and education are powerful means to help people build lives beyond their illness.

 

 

  1. Program success is based on achieving quality of life and recovery outcomes.

 

Recovery Based Service Categories and Vignettes

1)      Welcoming / engagement – connecting the member with staff, program and peers, relationship building, demonstrating our “usefulness” to the member, engaging in collaborative goal setting, shared decision making, connecting with the member through self-disclosure

I asked Ann to bring in the drawings she’d made with the art supplies her mother had sent to the Board and Care, admired them, and made a couple copies to put on the wall.  I also showed them to other members and staff who were sitting around the team area, introducing Ann as a “real artist”.

2)      Crisis interventions / Responding to basic safety needs and community expulsion threats – accessing, collaborating with and/or diverting from hospitals and jails, advocating with the legal system to prevent incarceration, locating, placing in and/or paying for emergency shelter to prevent homelessness, , safety interventions – medical, substance abuse harm reduction and prevention, responding to threats of dangerousness, suicidality, and impending harm (e.g., domestic violence)

Donna wandered into the team area looking quite confused.  She didn’t respond to anything I said, just staring at me. Yesterday she had been coherently calling checking her status on the waiting list for a rehab program, so it seemed likely she was high or coming down. We tried to get her to take some medication, but she wouldn’t.  We watched over her and gave her a ride home where they know she gets like this a lot and can take care of her.

3)      Assessments – assessing goals and needs, understanding their view of themselves, mental health status assessment, Quality of Life assessment, co-occurring conditions (e.g., medical, substance abuse, developmental disability), “eligibility” determinations (voc rehab, disabled students, SSI, bus passes), fitness determinations (legal competence, child custody and driver’s license)

Mike says he wants to get a job, but he seems far too disorganized and our employment staff is hesitant to work with him. We decide to give him a “we pay” job using client support funds to put together new charts and shred paper for us for one hour a day to see if he can show up and if he does, how he’s able to function at those tasks, and if he follows directions. The information gathered can also be used as part of his SSI disability report.

4)      Building and maintaining the safety net / “protective factors” –  assisting in obtaining benefits and entitlements, connecting to poverty services (e.g., COA food bank, multi-service center), charity (e.g., bus tokens, food, clothes, toiletries), safe and secure housing, family connections, assisting in obtaining basic documentation (e.g.,  ID, birth certificate), connecting to basic social

 

services (DPSS, SSA), connecting to cultural connections, (Native American services, UCC), connecting to spiritual strength and security (faith community)

Anna has been staying with a variety of men she finds, but they all end up taking her money and short lived. She seems always surprised when they pressure her for sex. We make a deal with Ann that if she contributes $150 per month out of her GR check, we’ll give her a hotel voucher worth $650 to have a safe place to stay for the month, but she can’t have any one stay in her room with her.

5)      Motivating / Engaging in growth oriented activities – engaging in motivational interviewing, outreaching to isolated members, exposure to opportunities e.g., plays, sports, dances, hobbies, job fairs, schools), exploration of possibilities for the future, career exploration, core gift activities, goal visualizing, peer bridging

Carl hangs out at the sober living all day long, using pot and not following up with anything.  He says he doesn’t have any money to do anything.  I offer to take him out to lunch with a small group of members and on the way intentionally take him by one of the other member’s apartment starting a conversation about what it would take for him to get an apartment of his own too.

6)      Treating mental illnesses and substance abuse disorders to reduce barriers – helping members to gain control over their mental illness, helping members to identify and control their symptoms (e.g., WRAP), 12-step step work, medication services, providing psychotherapy, building emotional coping skills (e.g., CBT, coping with past traumas, anger management, relationship skills), building wellness skills (e.g., meditation, eating and sleeping routines, yoga), treatment of acute symptoms and relapses

Renee is struggling with panic attacks and flashbacks of being raped and is overtaking the Klonipin she’s been prescribed combining it with alcohol.  I teach her several anxiety reducing techniques including a “butterfly hug” to use during flashbacks, relaxation imagery for when she’s not quite as anxious, and to carry around a small tin of coffee grounds in her pocket that immediately calm her by reminding her of her mother when she was a child.

7)      Treating physical illnesses – providing basic wound care, monitoring and treating chronic physical illnesses (e.g., diabetes, hypertension, chronic pain), medication management for physical illness medications, seizure response, physical illness education (e.g., diabetes, hepatitis), smoking cessation, promoting physical wellness (e.g., exercise and nutrition)

Dennis fell in the bathroom at the Village and said he was “knocked out” for a second.  I called a nurse to check his vital signs and make sure he didn’t have any neurological signs that would indicate we should take him to an Emergency Room.

 

8)      Providing and building support – connecting to Village resources (e.g., job development, educational) and community resources ( Jewish Community Center, Gay and Lesbian Center, primary care provider, 12-step support groups, warm lines), connecting to social services (e.g., In Home Supportive Services, Family Preservation), participating together in community

 

activities and opportunities (“giving moral support”), helping families to support members (e.g., family education, consultation, problem solving), providing help directly (e.g., “doing it for them,” adding structure to their lives, making decisions for them, ”caretaking”)

Martin needed to get help to move his stuff from his hotel room into a permanent apartment. He couldn’t get any friends or family to help him and he didn’t have $15 to pay day labor to do it with him. Since there wasn’t that much stuff, I drove my own car over and helped him put his stuff in my trunk and then helped him unload it into the apartment.

9)      Rehabilitation / Skill building – teaching, job coaching, supported models (employment, education, housing), in-vivo teaching, providing work experience, teaching self-help skills (e.g., budgeting, shopping, laundry, hygiene, medication management), helping the member to build and practice meaningful roles

 

Kenny’s shower head broke off in his apartment. His girlfriend who lives with him demanded that he do something about it and threw it at him. He brought it in and put it on my desk demanding that I do something about it.  First I coached him through the process of calling his manger with him on the phone talking but that got nowhere. Then we got in my car and I coached him through the process  of actually getting a replacement part at the hardware store.  Once again, he did the talking while I stood by his side giving him hints. He screwed the shower head back on himself. He wrote a letter to the manager, enclosing a copy of the bill, to get the money back sitting at my desk going over it step by step.

10)   Building personal growth and responsibility – Helping members understand and move through normal stages of life (e.g., prolonged adolescence, first parenting, mid-life crisis, empty nest syndrome), building self- responsibility (learning cause and effect, not blaming others), building self- efficacy (building the ability to positively impact one’s life), empowering members

Andy was offered a catering job with the Village Deli on a Saturday for four hours, but that was also the day his case worker was taking some members on an outing to Universal Studios. Andy was torn between fun and responsibilities. While another immature member urged him to go to Universal Studios with them and just have fun, I helped them both see how cancelling out on his boss at the  last minute would make him a less responsible employee and that fun has to scheduled around work.

11)   Community integration – developing and facilitating members’ connections beyond mental health and social services (Taking a member to a Mommy and Me group, helping a member to join a bowling league, creating a calendar of low-cost community events), helping member to discover niches, roles, and opportunities in the community, promoting being a good neighbor and citizen, helping member to invest in and give to community in positive ways, helping the member to learn to give to others

Francis had been raised Catholic, but hadn’t been back to Church in many years while she’d been on the streets and using drugs and prostituting.  Now she was clean, but felt too ashamed to return to

 

Church. I connected her up with another staff member who goes to Catholic Church regularly and he agreed to go with her and just sit in the back together during services to see how it felt.

12)   Community development – making the community a better place for people with mental illnesses, increasing tolerance and acceptance of mental illness, reducing segregation, reducing stigma, developing welcoming hearts in the community, building connections with other community social causes

The East Village Association arranged for a community clean-up day. A group of members and staff came in together as a Village team to help this neighborhood effort.

13)   Promoting self reliance, separation from services, and graduation – building financial independence (getting off SSI and Section 8), obtaining private insurance, preparing for graduation, facilitating relationship changes with staff, finding and providing opportunities to give back to others still struggling, developing self-advocacy skills, developing friendship skills

When Kathy called asking for my advice in her problem with her boyfriend, instead of giving her advice, I helped her explore who else she had in her life whose advice she could rely on, so she wouldn’t need me anymore.

87ARecoveryCultureProgressReport

welcome-to-hell

also, shop!

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Just so you know

I kept it to myself this year. I had a sleepless night.

It snuck up on me- April 5th- I had actually managed to convince myself that it wasn’t even April, really. I saw no date on the calendar. I didn’t realize until about 5 pm on April 4th. Then it was like a bag of bricks. Or an ocean of tears.

Then, like smoke, it was over, gone. No harm no foul. It was something different than my usual coping/ denial. I really want her to move on. I’m concerned for her. She lives in my heart, no matter, but I want her to face ahead. I want this for me too.

“May all be free of suffering and the causes of suffering.”

Here she is laughing with her brothers. They are both grown men.

Here she is laughing with her brothers. They are both grown men.

Yesterday was Andrew’s birthday. I want to give him a Goopymart shirt. but I need to wait until I get my first disability check. I called, he was at work. I texted. Later he texted back, we had a conversation. I miss him- he is so far. Just down in the Bay Area, so I guess not so far. He has a Berkeley PO box. Not certain where he and Chris live right now.

Matt is close by. Just in Beaverton. I went to his house last Sunday night to watch Game of Thrones He made a casserole. It was delicious. He made enough that he can have it for several days. I bet it’s gone now though.

This is one of my favorite pictures. Holding a butterfly in our front yard.

This is one of my favorite pictures. Holding a butterfly in our front yard.

This is in the front yard of where the kids grew up. The house we had from when Matt was born until both he and Andrew were men. It is unfortunate that we lost this house- I lost this house- because after all my breakdowns, after all my years of grief beyond speaking, after all my lost jobs and the ruins of my career we went into foreclosure.

Moved into that rental on Flavel that burned down and took so much of our life with it. No, correct that- it didn’t take any life; it only took stuff. Everyone, including the pets, was safe.

This next is cropped from the huge picture taken at Falcon Crest in the summer of 1989. You can find the original big version around here somewhere.

Even this cropped version is bigger than this- click for full size.

Even this cropped version is bigger than this- click for full size.

I wrote a song. Well, I wrote lots of songs. This one was called “Erin’s Ghost”. It was written when I still had so much anger with God I almost couldn’t pray without spitting. I wonder how it works as a poem… Since I don’t have the right equipment to record it now and I’ve lost the earlier recordings. It’s actually a prayer. If you read between the lines you might hear the spitting. No more spitting for me. God has whispered into my heart, and here, near the end of my life, has opened me to love. Maybe I’ll call it-

Ashes of Your Love

All the labor of my days

All the sweetness of my nights

All the times that I have cursed or have ignored You

The times I’ve touched You

The greatest joy I have ever known

I will undertake to lay these down before You

Because life burns away

As a fire is consumed

Don’t look for me below or up above

Only one thing will remain

Of what is gone without a trace

There is nothing but the ashes of Your love

You brought to me a baby girl

She was tired, she was sore

And You gave me dreams that I could love or even heal her

But for the time that she was mine

We shared too many bitter tears

Lord there were even days I could not bear to feel her

She had more pain to bear than joy

More to teach than she could learn

God she was deeper than her vision could yet show her

Still as my heart counts the years

She is never growing old

I’m left to reflect upon the grace it was to know her

Well, they say, “God cuts the thread”

So it was in her 14th year

That You allowed that she should end

Her own becoming

I could not believe it true

When I saw her lying dead

Though I held until

The chill of her was numbing

And still life burns away

As a fire is consumed

Do not look for me below or up above

For only one thing will remain

Of what is gone without a trace

Lord there’s nothing but the ashes of Your love

It’s hard to believe that she was right

And everything has turned out wrong

There was so much more to life she’d never tasted

I just pray that it’s true

As Your saints have often said

That there is no love in this world that’s ever wasted

But life burns away

Just as a fire is consumed

You will not find me down below or up above

Only one thing will remain

Of that which is gone without a trace

There’s nothing but the ashes of Your love

1992

1992

I love you, my first baby, my only daughter, my life’s greatest teacher, the one I once thought would never abandon me. You are with the loving Friend, move to even greater light, find your heart’s desire. And in all the worlds, the infinite worlds beyond counting, in which you still live, show your fire. Shine so brightly no one can keep from seeing your wild, beautiful fire.

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My Boss Retired, etc.

First off, June 30th was the last work day for my supervisor at the Oregon State Hospital. He has been a supportive and wise boss, not something you find everyday. My new boss can’t fill his shoes. My co-worker and I (there is essentially just one other person here doing the same job as myself) feel like we’ve been hung out to dry.

This is something that he wrote before retiring, click for download (word doc)

The Lighter Side of 45 Years Working in St

Other news at work- Next week the Department of Justice comes to visit. Oregon State Hospital is under fire, in trouble, up sh*t creek (pick your metaphor) due to problems in patient care, staffing, use of seclusion & restraints, etc. Staff have been told they shouldn’t try to talk to the DOJ Team. Especially we should not mention the horrible understaffing, mandated overtime and burnout which has not improved since their last visit. Patients have to sign up with their ward/ unit staff to be put on a lsit to talk to the Team. Some wards, notorious for poor conditions, treatment, have tried to spruce up; treating patients better for the past week in hopes that everyone will forget how things really are.

Some links to articles about the visit:

http://www.disabilityrightsoregon.org/usdoj-coming-back-to-oregon-state-hospital

http://www.mentalhealthportland.org/wp-content/uploads/2009/06/oregons-letter-to-the-federal-department-of-justice.pdf

http://www.oregon.gov/DHS/mentalhealth/osh/news/0709.pdf

http://www.statesmanjournal.com/article/20090712/NEWS/907120329/1001/news

sign-realitycheck

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Ray Update from MindFreedom

MindFreedom News – 15 April 2009
Nonviolent Revolution in Mental Health
http://www.mindfreedom.org/ray – please forward

    Ray Sandford Declares “Guarded Victory” for MindFreedom Ray Campaign

    Because of Public Pressure, Ray’s Psychiatrist May Quit Case

The bad news is that this morning, 15 April 2009, Ray Sandford of 
Minnesota had another involuntary, outpatient electroshock, also 
known as electroconvulsive therapy or ECT.

The good news is today’s forced electroshock could be Ray’s last.

Maybe.

Ray Sandford called the MindFreedom office this afternoon to say that 
because of growing public pressure, Ray’s main psychiatrist Dean K. 
Knudson plans to quit as Ray’s psychiatrist. Dr. Knudson has been 
ordering the forced electroshocks.

If Ray is quickly assigned a new psychiatrist more sensitive to Ray’s 
human rights and need for humane alternatives, then Ray could be free 
of his ongoing forced electroshocks. Ray has had more than 40.

Dr. Knudson had scheduled Ray’s next forced shock for 30 days from 
today. The court order allowing Ray’s forced electroshock does not 
mandate the psychiatrist to prescribe it.

Ray said that his general guardian, Tonya Wilhelm of Lutheran Social 
Service, told Ray in a phone call today that she had talked to Dr. 
Knudson personally. According to her, Dr. Knudson’s insurance company 
expressed concern to him about the enormous grassroots campaign that 
MindFreedom is building to stop Ray’s forced electroshocks.

RAY CAMPAIGN TO CONTINUE

“Tonya told me that because of all the controversy, Dr. Knudson’s 
insurance company may force him to stop being my psychiatrist,” said 
Ray. “Absolutely this is a guarded victory. I want to be sure to 
thank people for their diligence, and for everything they’re doing to 
support me.”

David W. Oaks, Director of MindFreedom International commented, 
“Today is USA Tax Day. If Ray’s supporters keep it up, it looks like 
taxpayers may get a break, and not waste their money torturing Ray 
any more.”

The Ray Campaign will continue, said Oaks. “We need to stay vigilant 
about Ray’s rights, make sure Dr. Knudson quits, and help Ray find a 
better lead mental health professional pronto.”

The Ray Campaign also raises a question: How many other Ray’s are there?

Said Oaks, “It is proven beyond a doubt that there are others 
throughout the USA and internationally who are getting electroshock 
over their clearly expressed wishes. Every USA state and every nation 
needs a ‘Ray Law’ to stop this nightmare forever.”

~~~~~~~~~~~~~

    ACTION ACTION ACTION

*** PLEASE SHARE THE GOOD NEWS OF THE RAY CAMPAIGN’S “GUARDED VICTORY”!

Forward this alert to appropriate places on and off Internet!

*** LEARN ABOUT THE RAY CAMPAIGN!

For background including Ray Frequently Asked Questions, Ray’s Web of 
Links, YouTube video of Ray and his mom, National Public Radio 
coverage
, how to participate in campaign, and more, see:

http://www.mindfreedom.org/ray

*** UNITY WORKS!

MindFreedom International unites to take action for a nonviolent 
revolution in the mental health system.

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Study 15

From the Washington Post:

A Silenced Drug Study Creates An Uproar

By Shankar Vedantam
Washington Post Staff Writer
Wednesday, March 18, 2009; A01

 

The study would come to be called “cursed,” but it started out just as Study

15.

It was a long-term trial of the antipsychotic drug Seroquel. The common wisdom

in psychiatric circles was that newer drugs were far better than older drugs,

but Study 15’s results suggested otherwise.

As a result, newly unearthed documents show, Study 15 suffered the same fate as

many industry-sponsored trials that yield data drugmakers don’t like: It got

buried. It took eight years before a taxpayer-funded study rediscovered what

Study 15 had found — and raised serious concerns about an entire new class of

expensive drugs.

Study 15 was silenced in 1997, the same year Seroquel was approved by the Food

and Drug Administration to treat schizophrenia. The drug went on to be

prescribed to hundreds of thousands of patients around the world and has earned

billions for London-based AstraZeneca International — including nearly $12

billion in the past three years.

The results of Study 15 were never published or shared with doctors, even as

less rigorous studies that came up with positive results for Seroquel were

published and used in marketing campaigns aimed at physicians and in television

ads aimed at consumers. The results of Study 15 were provided only to the Food

and Drug Administration — and the agency has strenuously maintained that it

does not have the authority to place such studies in the public domain.

AstraZeneca spokesman Tony Jewell defended the Seroquel research and said the

company had disclosed the drug’s risks. Since 1997, the drug’s labeling has

noted that weight gain and diabetes were seen in study patients, although the

company says the data are not definitive. The label states that the metabolic

disorders may be related to patients’ underlying diseases.

The FDA, Jewell added, had access to Study 15 when it declared Seroquel safe

and effective. The trial, which compared patients taking Seroquel and an older

drug called Haldol, “did not identify any safety concerns,” AstraZeneca said in

an e-mail. Jewell added, “A large proportion of patients dropped out in both

groups, which the company felt made the results difficult to interpret.”

The saga of Study 15 has become a case study in how drug companies can control

the publicly available research about their products, along with other

practices that recently have prompted hand-wringing at universities and

scientific journals, remonstrations by medical groups about conflicts of

interest, and threats of exposure by trial lawyers and congressional watchdogs.

Even if most doctors are ethical, corporate grants, gifts and underwriting have

compromised psychiatry, said an editorial this month in the American Journal of

Psychiatry, the flagship journal of the American Psychiatric Association.

“The public and private resources available for the care of our patients depend

upon the public perception of the integrity of our profession as a whole,”

wrote Robert Freedman, the editor in chief, and others. “The subsidy that each

of us has been receiving is part of what has fueled the excesses that are

currently under investigation.”

Details of Study 15 have emerged through lawsuits now playing out in courtrooms

nationwide alleging that Seroquel caused weight gain, hyperglycemia and

diabetes in thousands of patients. The Houston-based law firm Blizzard,

McCarthy & Nabers, one of several that have filed about 9,210 lawsuits over

Seroquel, publicized the documents, which show that the patients taking

Seroquel in Study 15 gained an average of 11 pounds in a year — alarming

company scientists and marketing executives. A Washington Post analysis found

that about four out of five patients quit taking the drug in less than a year,

raising pointed doubts about its effectiveness.

An FDA report in 1997, moreover, said Study 15 did offer useful safety data.

Mentioning few details, the FDA said the study showed that patients taking

higher doses of the drug gained more weight.

In approving Seroquel, the agency said 23 percent of patients taking the drug

in all studies available up to that point experienced significant weight

increases, compared with 6 percent of control-group patients taking sugar

pills. In 2006, FDA warned AstraZeneca against minimizing metabolic problems in

its sales pitches.

In the years since, taxpayer-funded research has found that newer antipsychotic

drugs such as Seroquel, which are 10 times as expensive, offer little advantage

over older ones. The older drugs cause involuntary muscle movements known as

tardive dyskinesia, and the newer ones have been linked to metabolic problems.

Far from dismissing Study 15, internal documents show that company officials

were worried because 45 percent of the Seroquel patients had experienced what

AstraZeneca physician Lisa Arvanitis termed “clinically significant” weight

gain.

In an e-mail dated Aug. 13, 1997, Arvanitis reported that across all patient

groups and treatment regimens, regardless of how numbers were crunched,

patients taking Seroquel gained weight: “I’m not sure there is yet any type of

competitive opportunity no matter how weak.”

In a separate note, company strategist Richard Lawrence praised AstraZeneca’s

efforts to put a “positive spin” on “this cursed study” and said of Arvanitis:

“Lisa has done a great ‘smoke and mirrors’ job!”

Two years after those exchanges, in 1999, the documents show that the company

presented different data at an American Psychiatric Association conference and

at a European meeting. The conclusion: Seroquel helped psychotic patients lose

weight.

The claim was based on a company-sponsored study by a Chicago psychiatrist, who

reviewed the records of 65 patients who switched their medication to Seroquel.

It found that patients lost an average of nine pounds over 10 months.

Within the company, meanwhile, officials explicitly discussed misleading

physicians. The chief of a team charged with getting articles published, John

Tumas, defended “cherry-picking” data.

“That does not mean we should continue to advocate” selective use of data, he

wrote on Dec. 6, 1999, referring to a trial, called COSTAR, that also produced

unfavorable results. But he added, “Thus far, we have buried Trials 15, 31, 56

and are now considering COSTAR.”

Although the company pushed the favorable study to physicians, the documents

show that AstraZeneca held the psychiatrist in light regard and had concerns

that he had modified study protocols and failed to get informed consent from

patients. Company officials wrote that they did not trust the doctor with

anything more complicated than chart reviews — the basis of the 1999 study

showing Seroquel helped patients lose weight.

For practicing psychiatrists, Study 15 could have said a lot not just about

safety but also effectiveness. Like all antipsychotics, Seroquel does not cure

the diseases it has been approved to treat — schizophrenia and bipolar

disorder — but controls symptoms such as agitation, hallucinations and

delusions. When government scientists later decided to test the effectiveness

of the class of drugs to which Seroquel belongs, they focused on a simple

measure — how long patients stayed on the drugs. Discontinuation rates, they

decided, were the best measure of effectiveness.

Study 15 had three groups of about 90 patients each taking different Seroquel

doses, according to an FDA document. Approximately 31 patients were on Haldol.

The study showed that Seroquel failed to outperform Haldol in preventing

psychotic relapses.

In disputing Study 15’s weight-gain data, company officials said they were not

reliable because only about 50 patients completed the year-long trial. But even

without precise numbers, this suggests a high discontinuation rate among

patients taking Seroquel. Even if every single patient taking Haldol dropped

out, it appears that at a minimum about 220 patients — or about 82 percent of

patients on Seroquel — dropped out.

Eight years after Study 15 was buried, an expensive taxpayer-funded study

pitted Seroquel and other new drugs against another older antipsychotic drug.

The study found that most patients getting the new and supposedly safer drugs

stopped taking them because of intolerable side effects. The study also found

that the new drugs had few advantages. As with older drugs, the new medications

had very high discontinuation rates. The results caused consternation among

doctors, who had been kept in the dark about trials such as Study 15.

The federal study also reported the number of Seroquel patients who

discontinued the drug within 18 months: 82 percent.

Jeffrey Lieberman, a Columbia University psychiatrist who led the federal

study, said doctors missed clues in evaluating antipsychotics such as Seroquel.

If a doctor had known about Study 15, he added, “it would raise your eyebrows.”

ascent_of_mount_carmel_

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Grist

for the mill. Obtained from various web locations.

Concerning Premature death associated with bipolar disorder

 

 

Evidence of premature death for people diagnosed with bipolar disorder comes from a study published in Psychiatric Services (abstract available). This study adds to previous warnings discussing risk factors contributing to chronic illnesses such as heart disease and diabetes. The authors reviewed 17 published studies (between 1959 and 2007) involving more than 330,000 people.

October 20, 2008

Antipsychotic meds and heart disease

 

 

An NIMH study (n=1125) comparing antipsychotic medications and cardiac heart disease found the “risk for CHD differed significantly among the medications.” Risk, marked by elevated cholesterol, was highest for those taking olanzapine (Zyprexa, Zydis) and quetiapine (Seroquel). A decreased risk was noted for those taking risperidone (Risperdal) and ziprasidone (Geodon). Cardiovascular disease is a contributing factor to the shorter life span of people diagnosed with schizophrenia.

January 16, 2009

Sudden death associated with anti-psychotic drugs

Researchers from Vanderbilt University say the rate of sudden cardiac death is twice as high (29 versus 14 per 10,000) for people taking anti-psychotic medication than for those who aren’t. Based on analysis of 15 years of Medicaid data from Tennessee, authors of a study published in the New England Journal of Medicine (http://content.nejm.org/cgi/content/full/360/3/225) conclude that despite expectations that they differed, first and second generation anti-psychotic drugs have similar, dose-related risks.

March 29, 2007

Medication choices for treating bipolar

A double-blind, placebo-controlled study (N=366) appearing in the on-line New England Journal of Medicine reports that, as an adjunct to mood stabilizers, anti-depressants added no more benefit than a placebo to people diagnosed with bipolar disorder. Work was conducted by a consortium of medical schools in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD), sponsored by the National Institute of Mental Health.

http://www.miwatch.org/

 

Article

Premature Mortality From General Medical Illnesses Among Persons With Bipolar Disorder: A Review

Babak Roshanaei-Moghaddam, M.D. and Wayne Katon, M.D.

The authors are affiliated with the Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle. Send correspondence to Dr. Katon at Psychiatry Consultation-Liaison Services, BB-1661 University Hospital, Box 356560, Seattle, WA 98195 (e-mail: wkaton@u.washington.edu).

OBJECTIVE: Despite recent evidence that patients with bipolar disorder are at increased risk of premature mortality resulting from general medical disorders, there has been no systematic review of published studies. The authors reviewed the literature to determine whether there is evidence of increased risk of mortality from general medical causes among patients with bipolar spectrum disorders. METHODS: MEDLINE was searched from 1959 to 2007 with a focus on bipolar disorder and medical mortality. Published studies in English with more than 100 patients were included. RESULTS: Seventeen studies were identified involving 331,000 patients with bipolar disorder, affective psychosis, affective disorder severe enough to require inpatient psychiatric care or treatment with lithium, or schizoaffective disorder (that is, bipolar spectrum disorders) meeting the inclusion criteria. Compared with age- and sex-matched control samples without mental illness in the general population, mortality ratios for death from natural causes and from specific general medical conditions, such as cardiovascular, respiratory, cerebrovascular, and endocrine disorders, were significantly higher among patients with bipolar spectrum disorders in most studies. This finding was more consistent in larger studies with more than 2,500 patients with bipolar spectrum disorders. Cumulatively, cardiovascular disorder appeared to be the most consistent cause of excess mortality in larger studies. CONCLUSIONS: The available evidence suggests that bipolar spectrum disorders are associated with increased premature mortality secondary to general medical illnesses. Unhealthy lifestyle, biological factors, adverse pharmacologic effects, and disparities in health care are possible underlying causes for this excess mortality.

JournalWatch: http://general-medicine.jwatch.org/cgi/content/full/2009/114/1

Antipsychotic Drugs and Sudden Cardiac Death

Both typical and atypical agents doubled risk for sudden cardiac death.

The latest evidence linking antipsychotic drugs to sudden cardiac death is provided by a retrospective cohort study based on data from Tennessee Medicaid. Vanderbilt University researchers identified 93,000 adults (age range, 30–74) who used antipsychotic drugs between 1990 and 2005; about half used typical agents (most commonly haloperidol or thioridazine), and half used atypical agents (most commonly clozapine, quetiapine, olanzapine, or risperidone). These patients were matched by age and sex with 186,000 controls.

The rate of sudden cardiac death was twofold higher among current users of antipsychotic drugs than among nonusers (about 29 vs. 14 sudden deaths per 10,000 person-years). This significant doubling of risk was noted with both typical and atypical agents. These findings were strengthened by several additional analyses: A dose-response pattern was noted; risk for former (i.e., noncurrent) antipsychotic drug users was similar to that of nonusers; and findings from a propensity analysis (which minimizes the influence of potentially confounding factors) mirrored those of the initial analysis.

Comment: This study provides additional evidence that both typical and atypical antipsychotic drugs elevate risk for sudden cardiac death. A plausible mechanism exists: Antipsychotic drugs block repolarizing potassium currents and can prolong the QT interval. In a strongly worded editorial, the writers advocate sharp reductions in use of these agents for off-label indications (e.g., behavior control in dementia patients) and suggest that patients undergo electrocardiography before and shortly after starting these drugs (to detect QT prolongation).

Allan S. Brett, MD

Published in Journal Watch General Medicine January 14, 2009

Citation(s):

Ray WA et al. Atypical antipsychotic drugs and the risk of sudden cardiac death. N Engl J Med 2009 Jan 15; 360:225.

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News from MindFreedom and other discussions

It’s been a while since I posted information from MFI or other mental health consumer discussion, so, here, from old to newer; have a full bowl-

picasso_donquixote

NY Times says minor reform is not enough, but stops short of calling
for what is needed: Laws that criminalize extreme psychiatric
corruption. Please forward. See BOTTOM for actions, including
nonviolent protest, you can take.

lunar2009

~~~~~~~~~~
New York Times Editorial – 4 January 2009

No Mugs, but What About Those Fees

New pharmaceutical industry guidelines should stop most drug
companies from distributing a wide range of trinkets and office
supplies designed to keep their brand names before doctors as a
subliminal inducement to prescribe high-priced drugs.

The new code, which kicked in on New Year’s Day, bars the free
distribution of everything from pens to coffee mugs and staplers by
some 40 drug companies that have agreed to the restrictions. That may
seem like small potatoes, but in the aggregate the promotional
products probably cost about $1 billion a year, as Natasha Singer
reported in The Times. The updated rules are the industry’s latest
attempt to restore public confidence that doctors are prescribing
medicines in the patient’s interest. The code still has too many
loopholes.

Although it prohibits company sales representatives from providing
restaurant meals to health care professionals, it allows the sales
teams to continue providing modest meals in professional offices
while pitching their products. It allows companies to continue paying
for so-called continuing medical education for physicians while
correctly leaving the selection of content, speakers and study
materials to conference organizers. There appear to be no loopholes
in bans against providing free tickets to the theater, sporting
events or resort junkets.

None of the steps yet contemplated by industry or professional groups
would completely sever the medical profession and many individual
doctors from their far more disturbing financial ties to the drug
industry.

Over the years, prominent physicians have received hefty fees for
conducting research, consulting or giving “educational” speeches
touting the virtues of drugs to their colleagues. The new industry
code would limit consultants’ fees to “fair market value,” but
critics believe that still leaves far too much room to pay individual
doctors handsomely.

Two investigations now under way at prominent universities show how
much more needs to be done to aerate undisclosed conflicts of interest.

A prominent psychiatrist at Emory University is accused of taking
large payments from a drug maker – and misleading his university
about the amounts – while heading a government study of the company’s
antidepressant drugs. Three psychiatrists at Harvard whose work
fueled an explosion in the use of powerful antipsychotic drugs to
treat children are accused of failing to report large payments from
the drug makers, most of which they had not disclosed to their
institutions.

Congress needs to pass legislation that would force all drug and
medical-device companies to report a wide range of payments to
doctors through a national registry so that all conflicts are known.
This is a reform that the industry itself now seems willing to
accept. Better yet, the medical profession needs to wean itself
almost entirely from its pervasive dependence on industry money.

~~~~~~~~~~
** ACTION ** ACTION ** ACTION **

Please forward

~~~~~~~~~~
You may e-mail letter to editor of *LESS* THAN 150 WORDS to The NY
Times here: letters@nytimes.com. Include your contact info. Letters
referring to a recent NY Times editorial have a better chance of
being run.

~~~~~~~~~~
Link to editorial:

http://www.nytimes.com/2009/01/05/opinion/05mon1.html

or

http://tinyurl.com/nytimes-psychiatry

~~~~~~~~~~
MARK YOUR CALENDAR

Thought financial industry corruption was bad? Psychiatric industry
corruption kills kids.

Put psychiatric abusers behind bars. MindFreedom calls for new laws
and enforcement of current laws mandating prison time for extreme
psychiatric human rights violations.

Join nonviolent protests of psychiatric drug money corruption in
front of American Psychiatric Association Annual Meeting Exhibit Hall
at San Francisco’s Moscone Center, or WHEREVER you are, 17 to 18 May
2009
. Info about this and other events:

http://www.mindfreedom.org/events_sf

~~~~~~~~~~
Read more about USA Congressional investigation of psychiatric
profession here, including past NY Times articles and editorials:

http://www.mindfreedom.org/kb/psych-drug-corp/congress

~~~~~~~~~~
To thank USA Senator Chuck Grassley (R-IA) for leading the
congressional investigation use this web form:

http://grassley.senate.gov/contact.cfm

mp_yb

MindFreedom News – January 2009
http://www.mindfreedom.org – please forward

Another forced electroshock for Ray. ZAP BACK!

Join global nonviolent resistance ONLINE!

This Saturday, 10 January 2009, 2 pm ET, 11 am PT click into:

http://www.blogtalkradio.com/davidwoaks

Live Free MindFreedom Mad Pride Web Radio – Special ZAP BACK SHOW.

Ray will be woken up early in his “Victory House” group home near
Minneapolis again this morning, Wednesday, 7 January 2009.

Ray Sandford is scheduled for another forced electroshock.

Under a court order and over his expressed wishes, he’ll be escorted
the few miles to Mercy Hospital, put under anesthesia, and given
another “electroconvulsive therapy” or ECT through his brain.

Ray says, “It is scary as hell every time I go.”

Today, involuntary electroshock continues for Ray and many others all
over the world.

houraidl4

New York Times Article:

Lilly Said to Be Near $1.4 Billion U.S. Settlement

By GARDINER HARRIS and ALEX BERENSON
Published: January 14, 2009

Eli Lilly, the drug company, is expected to agree as soon as Thursday to pay $1.4 billion to settle criminal and civil charges that it illegally marketed its blockbuster antipsychotic drug Zyprexa for unauthorized use in patients particularly vulnerable to its risky side effects.

Today’s Business: Gardiner Harris on the Eli Lilly Settlement
Related
Plea Agreement (U.S. v. Eli Lilly and Co.) (Findlaw.com>

Details of the agreement were provided by people involved in the negotiations.

Among the charges, Lilly has been accused of a scheme stretching for years to persuade doctors to prescribe Zyprexa to two categories of patients — children and the elderly — for whom the drug was not federally approved and in whom its use was especially risky.

In one marketing effort, the company urged geriatricians to use Zyprexa to sedate unruly nursing home patients so as to reduce “nursing time and effort,” according to court documents. Like other antipsychotic drugs, Zyprexa increases the risks of sudden death, heart failure and life-threatening infections like pneumonia in elderly patients with dementia-related psychosis.

The company also pressed doctors to treat disruptive children with Zyprexa, court documents show, even though the medicine’s tendency to cause severe weight gain and metabolic disorders is particularly pronounced in children. Over the last decade, Zyprexa’s use in children has soared.

The case is being prosecuted by the United States attorney’s office for the Eastern District of Pennsylvania. Patricia Hartman, a spokeswoman for the office, declined to comment.

Angela Sekson, a Lilly spokeswoman, said she could not comment on the status of the Zyprexa negotiations. Last fall, the company, anticipating a settlement, had set aside $1.4 billion for that purpose.

The amount of the settlement is a record sum for so-called corporate whistle-blower cases, which are federal lawsuits prompted by tips from company employees or former employees. In this case, the whistle-blowers have not been publicly identified.

Lilly executives have for years insisted that the company’s Zyprexa marketing efforts were legal and appropriate. When asked whether she could repeat those assurances, Ms. Sekson said, “It would be inappropriate for me to comment further right now.”

It could not be confirmed on Wednesday whether the company would acknowledge wrongdoing as part of the settlement. Without a settlement, Lilly risks being barred from participating in the federal Medicaid and Medicare programs — a huge part of its business — even though such bans are almost unheard of for big drug makers because their products are considered so essential.

In the United States, most of Zyprexa’s sales are paid for by government programs because so many of those taking Zyprexa are indigent or disabled. Zyprexa had sales of $4.8 billion in 2007, making it the biggest seller by far for Lilly, whose revenue that year was $18.6 billion. Depending on dosage, the drug can cost as much as $25 for a daily pill.

The settlement may have little impact on how doctors actually use Zyprexa, because physicians are free to prescribe drugs as they see fit. But drug makers are barred from promoting drugs for uses not specifically approved by the Food and Drug Administration.

Zyprexa has F.D.A. approval only for the treatment of schizophrenia and the mania and agitation associated with bipolar disorder.

Zyprexa has generated more than $39 billion in sales since its approval in 1996, making it one of the biggest-selling drugs in the world.

And despite mounting concern about Zyprexa’s risks and the negative publicity surrounding the legal case, sales were $3.5 billion for the first nine months of 2008, 2 percent higher than in the first nine months of 2007. Prescriptions for the drug actually declined, but Lilly raised prices on the drug enough to increase its revenues.

Zyprexa was initially received as a significant advance over an earlier generation of antipsychotic drugs. But a series of landmark studies in recent years have cast doubt on that long-held view and suggested that Zyprexa is no better than older drugs that sell for far less.

A government study published in September, for instance, found that Zyprexa was no more effective in children than an older medicine but caused more serious side effects. The children receiving Zyprexa gained so much weight during the study that a safety monitoring panel ordered that they be taken off the drug.

In December 2006 articles in The New York Times detailed hundreds of internal Lilly documents and e-mail messages among top company managers that showed how the company sought for years to play down Zyprexa’s tendency to cause weight gain and metabolic disorders, including diabetes, while promoting unapproved uses.

One 2000 e-mail message, for instance, described how a group of diabetes doctors that Lilly had retained to consider potential links between Zyprexa and diabetes had warned the company that “unless we come clean on this, it could get much more serious than we might anticipate.”

After those articles were published, Lilly threatened to seek criminal contempt charges against Dr. David Egilman, a Massachusetts physician and associate clinical professor at Brown University, who made the documents available to The Times. In September 2007, Dr. Egilman agreed to pay Lilly $100,000 in return for the company’s agreement to drop the threat of criminal sanctions.

On Wednesday, Dr. Egilman said he felt vindicated by the imminent settlement. “I’m glad Lilly is acknowledging their wrongdoing,” he said. “Patients and doctors now know more about the side effects of the drugs they take.”

The government’s case will remain sealed until at least Thursday, when a judge is expected to approve the settlement. People involved in the negotiations say that prosecutors pressed for a resolution in the waning days of the Bush administration to avoid having to get another set of approvals from new bosses at the Justice Department in Washington.

While the settlement is intended to resolve all pending government claims, it is unclear whether all states, which are parties to the case through the federal-state Medicaid program, have agreed to the terms.

Some of the claims and evidence in the government’s case are similar to those made in a pending California state whistle-blower lawsuit in which Jaydeen Vicente, a former Lilly sales representative, described years of what she said were illegal Zyprexa marketing efforts.

Ms. Vicente and other Lilly sales representatives distributed a Lilly study contending that elderly patients who were prescribed the drug “required fewer skilled nursing staff hours than patients prescribed other competing medications” and reduced “caregiver distress,” the lawsuit states. Zyprexa often induces sleep in patients.

“In truth, this was Lilly’s thinly veiled marketing of Zyprexa as an effective chemical restraint for demanding, vulnerable and needy patients,” the lawsuit states.

In October, Lilly agreed to pay $62 million to 32 states and the District of Columbia to settle consumer protection claims related to Zyprexa. It has also paid the state of Alaska $15 million to settle a separate suit and agreed to pay $1.2 billion to 31,000 Zyprexa plaintiffs. Some private Zyprexa claims remain unresolved.

mad-in-americajun03b

MindFreedom News – 14 January 2009
http://www.mindfreedom.org/ray – please forward

Another forced electroshock for Ray Sandford today.

Decision: Protest the mental health system, or not?

by David W. Oaks, Director, MindFreedom International

As I e-mail out this message, Ray Sandford is being escorted again
this Wednesday morning, 14 January 2009, from his group home near
Minneapolis, Minnesota to Mercy Hospital for another involuntary,
maintenance, outpatient electroshock under court order.

There is a decision each and every one of us needs to make.

It is the same decision Rev. Martin Luther King, Jr. and Rosa Parks
and thousands of others in the civil rights movement had to make.

To protest, or not?

One of my resolutions for 2009 is to nonviolently protest.

Ray — summoning that unstoppable human spirit that always impresses
me in so many psychiatric survivors — asks us to protest.

Survivors of electroshock human rights violations on the MindFreedom
“Zapback” e-mail list, where the Ray Campaign is being coordinated,
also say it’s time to protest the mental health system.

There are many ways, times, places and reasons to protest.

But it begins with a decision.

Ray’s forced electroshock today is not a fluke.

Ray’s forced shock is not because the mental health system lacks
money, though good programs need more resources.

Ray’s forced shock is not because of a few “bad apples” in the mental
health system
.

Ray is surrounded by an array of taxpayer-funded agencies and
professionals who are charged with protecting and helping Ray.

Ray has had court hearings represented by a court-appointed attorney.
He has a conservator, general guardian and a guardian ad litem.
Minnesota legal advocacy, ombudsman and mental health consumer groups
are well aware of Ray’s shock. Minnesota’s Governor Pawlenty has
received hundreds of complaints. MindFreedom filed a torture
complaint with the United Nations.

The headquarters of the Evangelical Lutheran Church in America
[ELCA], whose six Synods in Minnesota own Ray’s guardian agency
LSSMN, say they have been inundated with hundreds of complaints.
Their official response: They’re not in charge of Ray’s shock, though
we never said they were. We asked ELCA to stand up publicly against
forced electroshock, they refuse.

Ray’s forced shock is a sign and symptom of how extremely oppressive
today’s mental health system remains, and how so much of our society
is complicit with this oppression.

Ray’s forced shock is an excruciatingly painful lesson and wake up
call to us all about an oppression so deep, it is seldom named: sanism.

Ray’s courage has educated so many people. Because Ray called the
MindFreedom office this Fall, many people now know forced
electroshock exists, and that psychiatrists sometimes give ongoing
“maintenance” electroshock. Many now know electroshock is often given
on an outpatient basis.

Many people now know that even Americans living in their own homes,
which are supposed to be our “castles,” out in the community, without
being convicted of any crime, can be court ordered to receive such an
invasive, potentially-irreversible procedure.

Now we know.

Don’t let this knowledge become normal. As MLK said, show your
“creative maladjustment.”

When I was an activist in the peace movement, there was a saying. “To
know, and not to act, is not yet truly to know.”

Reading about this on the Internet is not enough.

Each of us needs to decide and prepare:

Protest or not to protest?

When it’s time for a forced shock, Ray is told because preparation
must begin.

The day before, all food is removed from his fridge because to get
ready for anesthesia he cannot eat for a number of hours.

Then early in the morning staff wake him up and he is brought to the
hospital. Ray is put under anesthesia, and electricity is run through
his head inducing a convulsion. He wakes up with more memory and
cognitive problems.

Ray has had more than three dozen and he says, “It is scary as hell
every time I go.”

Ray’s forced shock is not because of a lack of public attention.

Hundreds have spoken out against this ongoing forced shock. Last
month, Ray’s plight was aired on National Public Radio. Ray’s own
elderly mother, a retired psychiatric nurse, has recently pleaded
with Ray’s psychiatrist to stop (since Ray is under guardianship, she
has no official say).

Most recently, Ray was sent to a neurologist for a check-up, but that
did not stop his shock.

The only change this past month is that instead of weekly
electroshock, Ray is now on a complicated pattern of every other
week, followed by every third week, back to every other week. Instead
of receiving his maintenance electroshock last Wednesday as Ray at
first expected, his shock is today.

Why are we surprised?

Based on the hard-won lessons of so many other groups that have
organized for their basic human rights, how can we expect real change
without protest?

In my 33 years in this field, I have seen many colleagues begin to
work in organizations and agencies that are funded by the mental
health system, and many of them are doing tremendously helpful and
crucial work. This work must continue, it’s a sign of hope.

Today it is common to hear mental health system leaders claim this
system’s values have changed to:

* Mental health consumer self-determination.

* Client empowerment.

* Advocacy and human rights.

* Recovery.

* Consumer-driven trauma-informed peer-delivered services.

And again, there are signs of hope.

But we ask:

Why is Ray Sandford getting involuntary maintenance electroshock this
morning?

Why is there a mental health “Abu Ghraib” operating before our very
eyes?

Why does forced electroshock and forced psychiatric drugging continue
in other states in the USA?

Why is forced electroshock growing internationally?

In my study of history, minor reform of psychiatry is not a solution,
minor reform is one of the problems.

Minor reform fuels more of the same.

When you hear a simple call for “more money” for the mental health
system
— without addressing the required fundamental change, watch out!

Remember Ray.

Truly, we need a nonviolent revolution in the mental health system.

Historically, nonviolent revolution requires nonviolent protest.

So there is one question now:

Protest, or not?

Protest begins with a decision. I hope you make that personal
commitment.

If you agree it is time for protest, please forward this to a
colleague and add in your own words, “I agree, it’s time.”

Remember Ray.

– David W. Oaks, Director, MindFreedom International

For links to latest news, Ray Campaign blog, and frequently asked
questions about the “No More Shock For Ray Campaign” go here:

http://www.mindfreedom.org/ray

MindFreedom International
454 Willamette, Suite 216 – POB 11284
Eugene, OR 97440-3484 USA

lunacy-titleCrazy is not even the word for it:

Old news from an unknown source:

“A new generation of drugs is needed,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health. “It is clear from this data that antidepressants are not the answer.”

Dr. Insel admits that another major treatment outcome evaluation study sponsored by NIMH, “Effectiveness of Adjunctive Antidepressant Treatment for Bipolar Depression,” the largest study yet, confirms that the widespread practice of prescribing antidepressants lacks clinical justification. The drugs were of no value for the treatment of depression thereby challenging US psychiatrists’ aggressive use of combined psychotropic drugs. U.S. psychiatrists’ “strongly held beliefs about the efficacy of antidepressants in treating bipolar depression” is not supported by evidence. The practice can be traced to the influence the drug industry has on U.S psychiatry.

The randomized, placebo controlled study was conducted at 22 major research centers participating in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD). It focused on patients diagnosed with bipolar I and II who were treated with any mood stabilizer approved by the FDA with and without an antidepressant. Of 366 patients enrolled in the study, 179 were randomized to mood stabilizer and the antidepressant, Paxil, and 187 were randomized to mood stabilizer and placebo. The study was published online in The New England Journal of Medicine, March 28, 2007, and is available free: [Link] Eighteen of the 20 investigators have extensive financial ties to drug manufacturers.

Patients who were randomized to placebo rather than the antidepressant fared better in all outcome measures-except the switch to mania which was reported a fraction of a percent higher among placebo patients-20 (10.7%) compared to 18 (10.1%) of patients on mood stabilizer and Paxil. However, the validity of this outlying finding is uncertain. In his accompanying editorial, Dr. Robert Belmaker point out: “Patients who had become manic in response to antidepressants in the past would not have enrolled in the trial, casting doubt on whether the drugs are safe for all bipolar patients.” [Link]

Another confounding element–which is almost always a problem in psychiatric research–is prior exposure to the drugs: Dr. Belmaker notes: “Almost 90% of the patients in the study by Sachs et al. were using a mood stabilizer at randomization. Thus, the study does not address the possibility that antidepressants can cause mania in patients with bipolar depression in the absence of a mood stabilizer.”

And the STEP-BD authors report that some patients were also taking an antidepressant at the time of randomization which was tapered by 50% the first week and withdrawn by second week. Clearly the effects of prior exposure to these drugs and the effect of tapering (i.e. withdrawal symptoms) may bias the results. Nevertheless, the findings are clearly against use of antidepressants in this population.

Table 3 provides the primary and secondary outcome results of the 26 week study. The primary outcome was “durable recovery” defined as 8 weeks of euthemia (non-depressed). The result: 42 of 179 patients (23.5%) achieved “durable recovery” on mood stabilizer + adjunctive antidepressant compared to 51 of 187 patients (27.3%) on mood stabilizer and placebo.

Results of secondary outcomes: “transient remission” defined as 1 to 7 weeks of non-depression: 32 patients (17.9%) achieved “transient remission” on mood stabilizer + adjunctive antidepressant compared to 40 (21.4%) on mood stabilizer and placebo. Discontinuation because of adverse effects: 22 (12.3%) on stabilizer and antidepressant compared to 17 (9.1%) on stabilizer and placebo.

Finally, an unclear secondary outcome criteria “treatment effectiveness” defined as “50% Improvement from baseline SUM-D score* without meeting DSM-IV criteria for hypomania or mania.” No indication of a duration criteria is given. The finding: 58 (32%) of patients on mood stabilizer and antidepressant compared to 71 (38%) patients on stabilizer and placebo.

The authors acknowledge: “we did not study a “pure” placebo group (one in which no active psychotropic medication was administered) and hence cannot establish the effectiveness of treatment with a mood stabilizer alone.”

Dr. Insell got it half right: “It is clear from this data that antidepressants are not the answer.” However, why does it follow that “A new generation of drugs is needed” ???

What disorder of the imagination do mainstream psychiatrists in the U.S. suffer from that they cannot fathom a world beyond the “next generation” of drugs-all the more so, in light of the evidence that the second generation antidepressants and antipsychotics have proven not only no better than the first generation, but arguably worse ?

ca_suicidal
MindFreedom International – 6 February 2009
Mind Your Freedom in Mental Health
http://www.mindfreedom.org – please forward

Four (4) very brief MindFreedom news items for a nonviolent
revolution
in mental health:

~~~~~~~~~~~~~~

1) Academy Award and Forced Electroshock

Ray Sandford of Minnesota has now had as many or more forced
electroshocks as the fictional character portrayed in the Academy
Award-nominated film _Revolutionary Road_:

Thirty-seven (37).

Ray Sandford, though, is a real human being.

Involuntary outpatient electroshock re-started for Ray Sandford, and
is slated to continue indefinitely.

Unless everyone acts.

Last week MindFreedom reported that Ray Sandford postponed one of his
series of forced maintenance outpatient electroshocks because of a
health problem.

Ray phoned the MindFreedom office with the sad news that his doctor
approved him for another involuntary electroshock, and Ray received
it yesterday morning, 5 February 2009.

It looks like thousands upon thousands of united people are needed to
unite to stop involuntary electroshock for Ray, and many others. Let
that include you!

For more info on the Ray Campaign to Stop Forced Outpatient
Electroshock, see this gateway:

http://www.mindfreedom.org/ray

~~~~~~~~~~~~~~

2) “Have a Heart – End Forced Electroshock” Show!

Next Guest on MindFreedom Mad Pride Free Live Web Radio:

Mary Maddock of Ireland — Electroshock survivor, author, and
community organizer.

On Valentine’s, Saturday, 14 February 2009, tune in for live free
Internet radio with MindFreedom, and guests that include Mary
Maddock, co-author of the book _Soul Survivor_. Mary is a MindFreedom
International board member who survived forced electroshock.

You can call in live using either your computer or telephone. We’ll
have the latest news about the Ray Sandford campaign.

Time: 11 am Pacific USA, 2 pm Eastern USA, 7 pm [1900] London UTC/GMT

More info on how to tune in every “Second Saturday” in 2009:

http://www.mindfreedom.org/radio

Get Mary’s book at MindFreedom’s Mad Market at http://www.madmarket.org

~~~~~~~~~~~~~

3) Australia Electroshocking Toddlers

Australia is now electroshocking toddlers, including 55 children aged
four and younger, and two kids under the age of four, according to
news reports.

Read essays and news items here:

http://www.mindfreedom.org/kb/mental-health-abuse/electroshock

In that folder you will find:

a) Essay by dissident psychologist Bruce Levine on Australia
electroshocking young children:

http://tinyurl.com/kid-shock
or
http://www.mindfreedom.org/kb/mental-health-abuse/electroshock/
electroshocking-toddlers

b) Essay by dissident psychiatrist Peter Breggin on same:

http://tinyurl.com/breggin-australia
or
http://www.mindfreedom.org/kb/mental-health-abuse/electroshock/
breggin-australia-electroshock

c) Australian news story on electroshocking kids, with statistics:

http://tinyurl.com/child-shock
or
http://www.mindfreedom.org/kb/mental-health-abuse/electroshock/child-
shock-therapy

~~~~~~~~~~~~~~

4) World Health Organization leader praises MindFreedom International
and Executive Director David W. Oaks

In its legal handbook, the World Health Organization (WHO) called for
zero use of involuntary electroshock over the expressed wishes of the
subject:

http://www.mindfreedom.org/kb/mental-health-abuse/electroshock

WHO is the official health organization of the United Nations.

Benedetto Saraceno, MD, Director, Department of Mental Health and
Substance Abuse at WHO said some very positive words about the work
of MindFreedom International, and MFI director David W. Oaks, here:

http://www.mindfreedom.org/about-us/david-w-oaks

psychiatry346185227_std

From the Independent:

Voluntary psychiatric patient fights for

freedom

By Tim Healy
Wednesday January 21 2009

A WOMAN yesterday asked the High Court to order her release from a psychiatric hospital, claiming her detention is not in accordance with the law.

The 69-year-old woman, who suffers from bipolar disorder, was admitted to the hospital on December 9 after being arrested by gardai.

She challenged this and yesterday a High Court judge ruled she had been lawfully detained at the hospital.

But the woman had taken separate proceedings, which opened yesterday, seeking her release when the hospital decided she should remain after she had agreed to be a voluntary patient.

The woman became a voluntary patient after an order committing her involuntarily was revoked on December 19 by order of a Mental Health Tribunal.

Last Thursday, the hospital refused to discharge her because it was not satisfied this would be in her best interests. The hospital invoked a provision of the Mental Health Act giving it power to detain voluntary patients.

Last Friday, the woman brought a second set of proceedings claiming the hospital has no power to do so because the MHT had already found she was not suffering from a mental “disorder” as required under law before a person can be committed involuntarily.

The case continues.

– Tim Healy

lunacy-kitten_with_a_gun

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Recovery Roundup- News and Views from the Movement

From MindFreedom:

Human Rights in Mental Health Alert – Please Forward

Calling All Human Rights Activists & Advocates: Support Ann L.!

New York State Citizen to be Forcibly Drugged on Outpatient Basis.

Ann L. says her forced psychiatric drugging makes her “sick and is torture.” But New York State is aggressively pushing for more forced drugging of Ann L. on an outpatient basis in her own community residence.

Ann L. is 50 years old, and says she has been in and out of the psychiatric system since she was 15. Ann says she was locked up for the past seven years in the notorious Pilgrim Psychiatric Center in New York, where she experienced years of forced psychiatric drugging.

Earlier this year Ann L. finally won her freedom.

She thought.

Ann got out of the institution and has been satisfied living in the community in the Irving Berkowitz Residence in West Brentwood. But now the State of New York is threatening to continue her forced psychiatric drugging while living at home even outside of the institution.

The State of New York is seeking to use “Kendra’s Law” to continue to administer forced psychiatric drugs to Ann L. using Involuntary Outpatient Commitment.

Ann L. (not her real name) states that she fears the forced psychiatric drugging will continue to debilitate her health and put her at risk for diabetes and heart disease.

Two independent nonprofit advocacy groups, MindFreedom and PsychRights, have determined that Ann L.’s situation is a priority. They are working together to support Ann L.’s bid for freedom in both the court room and the court of public opinion.

Stop the forced psychiatric drugging of Ann L.!

* * * ACTION * * * ACTION * * * ACTION * * *

Ann L. asks that you contact New York Governor Paterson. Use this web page:

http://161.11.121.121/govemail

or use this web link:

http://tinyurl.com/ny-gov

Phone: (518) 474-4623. Fax: (518) 486-4170

SAMPLE MESSAGE

Your own words & experiences are best. Please be civil but firm:

“I oppose the State of New York continuing the involuntary outpatient psychiatric drugging of Ann L. who is living in the Irving Berkowitz Residence in West Brentwood, New York. Please stop all forced psychiatric drugging in New York State.”

TALKING POINTS

1) Research shows that coercion is bad for a person’s “mental health.”

People subjected to forced psychiatric treatment have been shown to be at increased risk for drug dependence, disabling side-effects of medication, and suicide. Force can result in damage to self-esteem and the motivation toward recovery, as well as inducing or furthering fear and trauma.

2) People recover when they have a real choice among alternatives and volunteer services.

People recover when they are empowered to make their own choices, when they take responsibility for their own lives, and when they are offered hope. Under the conditions of Involuntary Outpatient Commitment this is impossible.

3) People deserve alternatives to psychiatric drugs.

Psychiatric drugging can cause additional mental and emotional problems, and can even kill. More humane and effective alternatives to psychiatric drugs ought to be offered for those who choose them.

4) Psychiatric human rights violations are life-threatening.

Research shows that people in the state mental health system die about 25 years younger than the general public. Remember the public death of Esmin Green who was denied any help while locked for 24 hours in a NY psychiatric emergency room.

ADDITIONAL ACTIONS

Please forward this alert to all appropriate places on and off the Internet.

It just takes a moment to contact additional New York State officials. If you can also phone or write that is helpful, but at least e-mail them. Be civil, be firm, don’t stop!!

Let them all know that forced psychiatric drugging is wrong and must be stopped!

Please contact these New York State officials immediately:

*** Assemblyperson Peter M. Rivera is Chair of the New York State Assembly Standing Committee on Mental Health, Mental Retardation and Developmental Disabilities.

He is a crucial elected leader focusing on the field of mental health.

Email: riverap@assembly.state.ny.us

Phone: (718) 931-2620

David W. Oaks to be “special presenter” at world

psychiatric congress

by David W. Oaks last modified 2008-07-24 13:06

Every few years, the World Psychiatric Association holds a World Congress. The WPA has invited MindFreedom International executive director David W. Oaks to be a “special presenter” at the Congress, which is in September 2008 in Prague.

David W. Oaks to be "special presenter" at world psychiatric congress

David W. Oaks, MFI Director, will address WPA.

Here is the title and abstract of the talk planned for the World Congress of the World Psychiatric Association by David W. Oaks, Director of MindFreedom International.

World Congress of Psychiatry

Document ID: WCP4323

MindFreedom International, Eugene, United States

David W. Oaks, oaks@mindfreedom.org

Topic: Ethics in psychiatry

Title: AN URGENT NEED FOR DIALOGUE ABOUT A “GLOBAL EMERGENCY” OF  HUMAN RIGHTS VIOLATIONS IN MENTAL HEALTH CARE

Abstract Body: The point of view of individuals who have experienced  human rights violations in mental health care, and the organizations  that represent us, need to be heard by psychiatric professional  organizations. Mediated dialogue must be encouraged between groups  representing psychiatric survivors and groups representing mental  health professionals.

We are not alone. Dr. Benedetto Saraceno, Director of the Department  of Mental Health and Substance Dependence at the World Health  Organization (WHO), has stated, “The violation of human rights of …  psychiatric services users and the recognition of their role and  rights as citizens are a main concern for WHO. WHO thinks that no  treatment can be credibly provided in a context which systematically  violates human rights. There is a global emergency for the human  rights of people suffering from mental health problems. I insist on  the word ‘global’ as people tend to believe that these kinds of  violations always occur somewhere else when, in fact, they occur  everywhere.”

Certain human rights controversies are especially pressing, such as  involuntary electroconvulsive therapy (ECT) against the expressed  wishes of the subject, and long-term, high-dosage coerced  administration of neuroleptic psychiatric drugs.

In a broader sense, though, if a family with a member in severe  crisis is primarily offered psychiatric drugs, when non-drug  approaches can work, this too is a kind of coercion. I respect an  individual’s right to take prescribed psychiatric drugs. However,  being offered only one choice is not really a choice at all. Creating  more non-drug voluntary alternatives has become a human rights concern.

Here is a link to the bio about David W. Oaks on the World Psychiatric Association web site:

http://www.wpa-prague2008.cz/Text/oaks

From Recovery from Schizophrenia (Ron Unger):

Radio Interview

Posted by Ron Unger on July 15th, 2008

An interview with me on “Madness Radio” can be found at
http://freedom-center.org/madness-radio-cognitive-therapy-ron-unger I talk about why I got interested in psychosis, mainly because of my own experiences as a young man that it seemed to me were understandable yet not likely to be understood by our current mental health system. Then I talk about cognitive therapy for psychosis and why I think it is a helpful and needed addition to the mental health field.

Download episode file directly:
http://freedom-center.org/audio/download/384/MadnessRadio-2008-07CognitiveTherapyRonUnger.mp3

Short Video Clip

Posted by Ron Unger on July 14th, 2008

Hugh Massengil videod part of a seminar I did, and posted it to YouTube. I’m discussing the relationship between cognitive therapy for psychosis and medications, and then talking a little about “what is psychosis” and the continuum between everyday errors and “psychosis.” If you want to check it out, it’s available at http://www.youtube.com/watch?v=TFjBnScM2Bk

Recovery Stories

Posted by Ron Unger on July 5th, 2008

Recently a couple people I know have put their recovery stories on the web. One is my friend Hugh Massengil, who got his story put on an official state website, even though his story suggests mental health treatment is almost completely off track, at least in its standard form. He is on a committee about increasing wellness among those with mental health diagnoses (very important given data that such people typically die 25 years earlier than average, often due to conditions that are aggravated by medication.) His story illustrates that wellness often is a result of successfully breaking away from traditional “treatment.” You can access his story at http://www.oregon.gov/DHS/mentalhealth/wellness/success.shtml

Another is the story of Oryx Cohen, who is one of the leaders at the Freedom Center http://www.freedom-center.org/ You can access Oryx’s story at http://www.familymentalhealthrecovery.org/2008TorontoRecoveryConf/TorontoRecovery08-OCohenCrashCourseWithPsychiatry.doc It’s a great read, going from his attempt to get his car to fly on the freeway (not very successful) to his attempt to get off psychiatric medications and have a good life (much more successful, though not without difficulty and one big slipup.)

Finally, I’d suggest checking out the video at http://bipolarblast.wordpress.com/2008/06/28/acute-psychosis-in-mania-and-schizophrenia/ It’s an overview of the perspective of psychosis as all about reorganizing the mind, as a positive process if the person gets supported in working through it in a good way. The video is well done and worth the time you will take watching it!

Also, check out this link:

http://www.successfulschizophrenia.org/

Thanks for reading,listening, paying attention.

My prayers go out to you and my wish that everyone you meet will be kind, gentle and wise.

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Mad Radio Tonight!

Mad Liberation

By MoonLight

Tonight! On KBOO Radio 90.7 FM

1- 2 a.m. Late Friday night

(yes, I know that it is technically Saturday morning- relax, it’s just a radio show)

August 15th, 2008

This show is dedicated to Everyone

*who has ever been given a psychiatric label,

*who experiences mental health challenges and of course to

*anybody who has the misfortune (or good fortune) of being awake at that hour.

You can participate!

Call in at (503) 231-8187

We also hope to have some live in-studio

musical performance by CS/X performers on

this show.

(Set your alarm if you aren’t usually up at that time)

Friday nights from 1 am to 2 am usually following the

full-moon, will be a segment on KBOO radio (90.7 on

your fm dial, to the left of NPR), also streamed on the

internet on their website,

http://www.kboo.fm/index.php will be time for

Mad Lib by Moonlight. The program is part of the

usual Friday night show, The Outside World.

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