Thursday, September 30, 2010

Mental Illness Awareness Week 2010: Changing Attitudes, Changing Lives

by Michael J. Fitzpatrick, Executive Director

Across the country, NAMI advocates are gearing up for Mental Illness Awareness Week (MIAW) 2010, which takes place October 3-9, to educate the public about serious mental illnesses like major depression, bipolar disorder and schizophrenia.

MIAW is especially important this year as state budget cuts continue to threaten critical mental health services nationwide.
Order or download Mental Illness
Awareness Week resources

Mental illnesses are serious medical illnesses that affect all of our communities. On average, people living with serious mental illness live 25 years less than the rest of the population. One reason is that less than one-third of adults and less than one-half of children with a diagnosed illness receive treatment.

Why do so few people receive treatment?

Former U.S. Surgeon General David Satcher has identified stigma as one serious barrier to getting help in his landmark Mental Health: A Report of the Surgeon General.

MIAW is an opportunity to fight stigma through education, awareness and advocacy. Together, we can change attitudes and save lives by challenging some of the inaccurate stereotypes and myths that are too often associated with mental illness.

NAMI Cambria County in Pennsylvania is one of many NAMI affiliates engaged in a number of great MIAW efforts that include health fairs, National Day of Prayer services, art exhibits and In Our Own Voice presentations that will educate our neighbors, colleagues, political leaders, faith communities and more.
During MIAW, NAMI Cambia County and other affiliates will screen Unlisted: A Story of Schizophrenia, a powerful documentary by Delaney Ruston, M.D. that captures the challenges individuals and families face in getting treatment and support.

Delaney is a physician and filmmaker who chronicles her challenging relationship with her father, Richard, a poet and novelist who lived with schizophrenia. For many years Delaney was estranged from her father, who at times lived on the streets and would show up at her door in psychotic states. Incapable of helping him, she became unlisted in the phone book. Ultimately, her own son’s curiosity about his grandfather inspired her to reconcile with Richard.

The film, which was warmly received at NAMI’s 2010 convention, explores how deeply mental illness can impact families, underscoring the importance of access to treatment and supportive housing.

If you can’t catch a local screening and discussion, PBS television stations in some communities will begin airing the film on Oct. 1 as well.

Our hope is that Unlisted screenings and other MIAW efforts will generate dialogues in every community, but also inspire action to protect mental health services during these difficult economic times.

The more our communities know about mental illness, the better they can help people get the help and support that they need. Contact your local NAMI for information on MIAW activities your community.

Thursday, September 16, 2010

Returning to NAMI's Research Advocacy Roots

By Dr. Ken Duckworth, NAMI Medical Director

NAMI is refocusing its efforts and returning to its roots in research advocacy—looking for better treatments and models both at the brain science and service levels. We now have quarterly meetings with Dr. Tom Insel, director of the National Institute of Mental Health (NIMH), to continue to learn from the latest in science and to advocate for better treatments for our membership. NIMH also needs more resources, which  is another of our advocacy challenges.

Fortunately, NIMH has refocused its work upon better connecting with the public health burden and real-life challenges of people living with serious mental illness. Dr. Insel  said he heard one message loud and clear from our membership at the 2010 convention in Washington, D.C.—that we need better treatments. A few areas from the NIMH discussions I found interesting:
  • A major iniative is dedicated to reconceptualizing the way brain functions work—and don’t work—together based on new data in neuroscience and genetics. Examples of the new conceptual model being developed (Research Domain Criteria—or RDoC ) organize everything we know about brain structure genetics and functions along key lines such as learning, memory or fear. The idea is to supplement the current diagnostic schema undergoing revision by the American Psychiatric Association (APA) with additional knowledge gleaned from basic research. I was drawn to this approach as it may yield a return on the genetic research that, while stimulating for science overall, has produced few tangible advances for our members.

  • NIMH has sponsored  research on ketamine as a possible antidepressant. This is a complex medication used in anesthesia and also a street drug (special K) that offers interesting models for the treatment of depression, especially bipolar depression, which is notoriously hard to impact.  The search for better medications to treat serious mental illness is of course a principle NAMI advocacy point.
At the service level , Dr. Lisa Dixon, professor of psychiatry at the University Maryland, and her team have demonstrated the effectiveness of NAMI’s Family-to-Family program in a randomized controlled trial (RCT). Look for publication of this work in the fall. RCTs are the gold standard for evidence and this is a major development for NAMI. The study is significant to our community in two ways. Firstly, NAMI members were fabulous in the way they organized in support of this work. In addition, many families had to take the chance of being assigned to the control (waiting) group of the study.

I can’t express how amazing our membership is. When people need Family-to-Family they are typically in a crisis. This selfless and heroic spirit of helping others to test how effective the program is speaks volumes about who our members are—truly giving individuals willing to put their own needs on hold to make a larger difference.

Wednesday, September 8, 2010

World Suicide Prevention Day: Kurt Vonnegut, Despair and Saving Lives

by Michael J. Fitzpatrick, Executive Director
Novelist Kurt Vonnegut, Jr.'s
life was touched by suicide
“You cannot be a good writer of serious fiction if you are not depressed,” wrote Kurt Vonnegut, Jr., an American novelist whose words and life story are particularly appropriate for this World Suicide Prevention Day. Vonnegut’s mother died by suicide and this event marked his whole life, appearing as a theme in many of his works such as Breakfast of Champions and Slaughterhouse-Five.

“I more or less told him that if he ever pulled crap like that again, I was going to come down on him like a ton of bricks," said Mark Vonnegut in reference to his father’s suicide attempt in 1984. Like his father, Mark lives with a mental illness and is a writer, the author of two memoirs. The two supported each other through the father’s suicide attempt and the son’s breakdown, hospitalization and eventual graduation from Harvard Medical School. Suicide, like mental illness, is rarely a story that features one protagonist. But once the story has stopped, the rest of the players struggle to find closure. We can see reflected in Vonnegut’s books what is true for anyone touched by suicide: the scar from the loss runs long and it runs deep.

“I want to stand as close to the edge as I can without going over. Out on the edge you see all the kinds of things you can't see from the center,“ Vonnegut wrote. Perhaps one of the reasons that his writing is so appealing is that he was able to speak from a place of despair, which was paradoxically the fuel for his often-gentle humanistic vision. Though people may feel there is no one with them on that edge, the reality is that many have stood in that same place of hopelessness, and many understanding listeners are available on suicide hotlines, at support groups and among mental health professionals.

We may never fully enter into another’s reasoning behind the decision to end their own life, but we can all challenge ourselves to become better listeners so that we can be there for each other when we’re seeing things from somewhere far from center. Download NAMI’s toolkit with resources for individuals, families and providers for some ideas that will get you started with asking the right questions or looking for a listening ear. As Vonnegut said:
“Why bother? Here's my answer. Many people need desperately to receive this message: I feel and think much as you do, care about many of the things you care about…You are not alone.”
If we all need to learn the signs of depression and take talk of suicide seriously, there are a few groups of people who may need extra attention. Almost all of us know someone who is unemployed or a veteran. Both are at a higher risk of suicide. We need to hold them especially close.

“Here we are, trapped in the amber of the moment,” Kurt Vonnegut wrote in a passage that could well describe the depths of depression. If you feel this way, or you suspect someone you know does, please reach out. We don’t have to be perfect ourselves to make that connection, to help or be helped. The man of many troubles and much compassion, Kurt Vonnegut, said of his son’s mental illness,  “We saw something beautiful when you got well. The recovery was worth it.”

Wednesday, September 1, 2010

NAMI Peer-to-Peer: An Intersection

 By Sarah O’Brien, Director of the NAMI Peer-to-Peer Program

The Peer-to-Peer vision

Many people come to NAMI’s Peer-to-Peer Recovery Education Program with feelings of guilt and self-blame—they feel they’ve brought mental illness upon themselves. When we teach them about other dimensions of mental illness—genetic causes, environmental factors—they begin to deconstruct those beliefs. It can come as a revelation when people realize that it’s not them, but a mental illness, a serious condition that can be treated.

Sarah O’Brien, Director
NAMI Peer-to-Peer
Peer-to-Peer is an intersection between the wisdom people gain through lived experiences and the need to know more about recovery. 

It is a body of knowledge and a place to be with people who understand where they’re coming from, a meeting place between the materials and the students—the potential that they’ve always had and a new understanding of their experiences.

A personalized approach

Recovery is such an individual process because mental illness affects people in similar ways and also in areas that are extremely personal. The Peer-to-Peer program offers a selection of tools and techniques from which people can choose what works best for them and tap into their own resiliency.

Some of our recent students said in their evaluations, “I plan to go back to school”; “I’m going to re-enter the job market” or “I can communicate better with my family”. The diversity within our testimonials illustrates the course’s usefulness for to people with different needs.

Peer-to-Peer works on several levels simultaneously. First and foremost, we want to communicate that recovery is possible. Once people have that sense of hope they can work on improving their lives in any number of ways. One of our goals is to empower people to make better choices. When individuals are educated about different aspects about mental illness, when they learn how to work better with a provider or what to expect from a hospital environment, they can choose to make the most of their options.

We also help participants develop effective coping mechanisms. This can range from strategizing how to meet basic needs during an episode of severe depression to creating an advanced directive for mental health care, which will ensure that someone’s treatment preferences are honored when they are in crisis.

One of the most important things Peer-to-Peer offers is a safe place to bond with peers. So many people come to us feeling isolated and find that they are not alone.

Finally, we want to nurture an individual acceptance of wherever someone is in their recovery process. Recovery is not linear and it doesn’t require perfection every day.

Areas of growth

The third edition of the Peer-to-Peer curriculum, released in winter 2010, places a greater emphasis on interactive activities than previous editions. This new edition will be available in Spanish at the end of October. Our upcoming Train the Trainers meeting with new instructors from around the country will involve some bilingual teachers as well.  Peer-to-Peer will also be expanding its online presence with a Facebook page and  materials available on the web to reach people who don’t have a class in their community.

One of Peer-to-Peer’s major goals is within the area of research. Currently, we’re partnering with a researcher from the University of Maryland to submit a proposal for a study with the National Institute of Mental Health. Our aim is to follow a similar path as that of NAMI Family-to-Family groups, which now have peer-reviewed research supporting their effectiveness.

Learning from participants

Like any good grassroots program, Peer-to-Peer doesn’t just teach students­—it learns from them. My experience has taught me that people are extremely resilient. Recently I met a teacher-in-training at a meeting in Washington state. After being homeless for many years and also incarcerated on drug-related charges, he had finally overcome many obstacles in his recovery process. He was at the training because he wanted to become a Peer-to-Peer instructor and help others who were confronting challenges similar to his own.

Watching people overcome so much hardship so they can reach out to others is one of the most incredible parts of my job. I am privileged to watch people with many challenges turn their lives around because suddenly they have tools and knowledge that they didn’t have access to before.