NATIONAL COALITION FOR MENTAL HEALTH RECOVERY CALLS FOR FAIR COVERAGE of Controversial Issue

National Mental Health Coalition Calls “Today Show” Electroshock Segment One-Sided

Coalition Recommends Balanced Coverage of Controversial Intervention

WASHINGTON, DC (8/22/13) – The National Coalition for Mental Health Recovery (NCMHR) urges “The Today Show” to provide balanced coverage of the risks of electroconvulsive therapy (ECT), in which grand mal seizures are electrically induced, usually to treat severe depression.

The NCMHR is responding to a one-sided segment about ECT that “Today” ran on August 20, 2013.

“We are disappointed, especially because two NBC producers had sought out ECT survivors who could attest to the disabling effects of this controversial treatment,” says NCMHR director Lauren Spiro, who was diagnosed with chronic schizophrenia. “The producers were given contact information for five willing individuals, but chose not to include them.” The producers later called this an editorial decision.

Mental health advocates demand that potential ECT recipients be told the truth about the risk of disabling effects – including permanent memory loss and cognitive deficits – so they can make an informed choice. These risks have been confirmed by researchers such as Dr. Harold Sackeim, a well-known proponent of ECT, whose 2007 study in Neuropsychopharmacology concludes: “this study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period.”

The Food and Drug Administration (FDA) continues to classify ECT equipment in its high-risk Class III category despite pressure from ECT equipment manufacturers to re-classify it into the lower-risk Class II.

ECT survivors speak about the devastating effects of ECT. In her acclaimed book, “Doctors of Deception: What They Don’t Want You to Know About Shock Treatment,” Linda Andre wrote, “Eventually you realize that years of your life have been erased, never to return. Worse, you find that your daily memory and mental abilities aren’t what they were before.”

“The research is clear: ECT causes closed head injury, temporary euphoria, then return of depression but with enduring memory loss,” says psychiatrist and NCMHR board member Daniel Fisher, M.D., Ph.D. He noted that, while many may experience a lifting of depression, this is temporary, but the disabling effects are permanent. Also, many ECT survivors say their depression was exacerbated by the stress associated with their ECT-related cognitive disabilities.

“We recommend more media coverage of innovative, non-invasive, cost-effective mental health interventions, including ‘peer-run services’ delivered by people who have recovered from severe mental health issues,” says Spiro.

Contact: info@ncmhr.org; Lauren Spiro, 877-246-9058

National Coalition for Mental Health Recovery
Tel: 877-246-9058 Email: info@ncmhr.org
http://www.ncmhr.org

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Updates for August: Recovery effort, Rights issues

Quote for August:  
“To live in society doesn’t mean simply living side by side with others in a more or less close cohesion; 
        it means living through one another and for one another.” 
                                                                                                                                                                                                              – Paul-Eugene Roy
 
 
AUGUST BRIEFS:
 
Recovery Coalition:  A state-wide Recovery Coalition is under development to formally promote policy and practice changes that will help turn our big ship from the engulfing ocean of a medical-and emergency- focused model of care to one focused on helping people achieve outcomes that reflect their recovery!  This Coalition is in the process of establishing a mission and a vision statement that will help us direct our efforts.  The group needs more representation from the eastern side of the state, a little more from the  western side.  Also, we need more minority voices.  If you are interested in participating, please let Laurie Coker know and she’ll forward your info to the individual coordinating the membership effort.  We are using a grid based on a survey of early participants (demographics and work backgrounds) to fill specific demographics at this point.  AND if you are a person on a recovery path and not affiliated with an employment role, we are hoping for more of those voices!
 
“Choice” Survey continues:  On NC CANSO’s website, (www.nccanso.org) you’ll find a 10-question survey that is helping us understand how people who use our public system perceive whether they have a choice of services or not and whether they feel choice is acknowledged as a value by managed care orgs or service providers.  If you use public mental health services, please help us with this survey.  We have had about 65 responses so far but are hoping to get 75 plus!  So far, the responses are insightful and this anonymous information will be shared with leadership in hopes of making a better system.  THANKS!
 
High Hospitalization and ED Rates:  Many of you have read about NC’s higher-than-national-average increase in the use of hospitals.  See article,  http://www.journalnow.com/news/state_region/article_e6087892-f257-11e2-97e8-001a4bcf6878.html                                .
The bimonthly meeting between consumer leaders and Division of MHDDSAS leadership focused discussion on this last week.  We considered the function of crisis plans which could be/should be accessed by triage staff at managed care orgs as a source that might help these staff find alternatives to hospitalization.  We discussed better community level advertisement of where to go when a person needs help, as many at the table felt that first-time E.D. visitors don’t know who to call to get help (NOTE:  According to state data, reportedly 40% to 50% of people going to hospitals are going for their first time to get treatment of mental health-related problems.).  We also addressed the role that peer centers can half in reducing hospitalizations and that hospital diversion through peer-operated respite centers would benefit our state.  We mentioned the consideration of block grant dollars to help fund these (this is how they are funded in Georgia) and state leadership felt that MCOs might be interested in funding such.  PLease advocates locally and to the state for innovations that reduce the desperate recourse of going to an emergency department!  So many people need an alternative to this!
 
Kendra’s Law in New York–a National Discussion:  After a young girl was killed by a person who was psychotic in recent years, the NY legislature passed a law requiring court commitment for outpatient services for a group of people with mental illness who were considered high risk.  The outcomes of this law after its first few years implementation were studied by our own Dr. Marvin Swartz and Dr. (Dan?) Swanson at Duke University.  The study reports improved outcomes for the patients court ordered to participate in treatment.  However, there are many in the community of those who have lived with mental illness, those who have recovered from it, and many who have provided services that the study does not consider some important factors and that outpatient commitment (“OPC”) reflects a failure to value the role of self-determination as a right and that choice is a foundation of recovery.  In deed, OPC reflects a failure in our culture and our mental health care systems to engage people in ways that respect them, engaging them and offering to give assistance toward helping a person to recovery, short-term or long-term..  Also, it has been noted that In New York, OPC clients were given a rich array of services wrapped about them, which is definitely a factor in the client’s outcomes.  Yet without an OPC, the array of servcies is not so rich.  So should we yield to politically based motivation or just do the right thing?  
 
So to the bigger point, if a society hopes to see more people living with decreased symptoms, perhaps it is society and its agents (systems) that need to change.  What if there were less shame associated with having a mind that works differently or with receiving mental health care?  And importantly, what if care providers became so astute at welcoming people into services in a way that they felt valued and hopeful about their own progress, about the potential for a different future?  What if we had systems that made choosing a provider so natural and easy, where access is facilitated by a friendly person instead of through an impersonal phone call through an MCO who knows little about a person and who may be motivated mainly by risk management doctrines within MCOs?  I am not trying to sound cynical, and I really don’t think this is cynicism.  I am suggesting that we should focus on helping our systems and our communities evolve toward more humane engagement of people who need help instead of court-ordering people into treatment. Many providers already do their best, but the administration of the service system does not allow them to focus sufficiently on engagement and CUSTOMER services.  There is, in fact, so much emphasis on risk management that there may be an invisible wall between service providers and those who so much would respond to support and hope!
 
Support hope and recovery, not legal interventions that minimize the individual and his role.
 
AND Speaking of Rights-   I reached out to Dr. Marvin Swartz this week after the controversial article in the NY Times about Outpatient Commitment.  He says the last time he studied OPC here in North Carolina was in the mid 1990s, and that system turmoil has likely had a negative effect on how well OPC would work  here, currently.   But our discussion led to one about the role of Psychiatric Advanced Directives (I might prefer to consider them “mental health care” advanced directives).   Dr. Swartz and a group of others in his program at Duke developed tools to help people to develop their own directives about their mental health care should they go into a hospital.  He is currently teaching a group of peer specialists how to assist others in developing their own directives and formalizing so they can have them to present if they should need hospitalization.  With this document, they can declare which medications work, which do not and which they will not take, etc.  They can specify other details important to them.
 
To learn more about this, check out this link to the National Resource Center on Psychiatric Advanced Directives, which contains several videos and webcasts that are really helpful. http://www.nrc-pad.org/educational-webcasts .  Further, Duke has a website focused on PADs specific to our state (each state has slightly differing laws on this.  Ours are reportedly more liberal than in some states in respecting the wished of the person needing care.)    The site address is http://pad.duhs.duke.edu/ and you can click on a link called “toolkit” to get more specific information.  However, Dr. Swartz is considering doing some fresh outreach and instruction on this and you may hear more from NC CANSO on this soon.
 
 
ENOUGH info for news update!  NC CANSO is working for our peers and for all who hope to encourage growth, recovery, and community for people with mental illness, substance mis-use, and other potential barriers to better lives.