Friday, July 1, 2011

The Wrong Diagnosis

I applaud the New York Review of Books for publishing Dr. Marcia Angell’s articles on “The Illusions of Psychiatry.” Three years ago, I responded to my step-brother’s suicide by giving up my practice as a corporate attorney to become the Executive Director of the National Alliance on Mental Illness for Montana (NAMI Montana). Shortly after that, another one of my loved ones was struck by serious mental illness. I have been personally and professionally immersed in the stark realities of serious mental illnesses and the haphazard treatment system that has evolved to treat those conditions.

While I disagree with many of Dr. Angell’s conclusions, I could not agree more that the method of diagnosing mental illnesses needs serious improvement. This ineffective diagnostic methodology has led to too many people taking medications that they do not need and too many people that do need medications taking the wrong types or dosages. As Dr. Angell described, some of the most heart-breaking examples of this systemic failure involve the improper medication of children. The financial impacts of these misdiagnoses on the public and private healthcare system are staggering. The pharmaceutical industry’s marketing efforts deserve some of the blame for this state of affairs, but it is not the main culprit.

The real problem is that medical providers are trying to diagnose biologically-based conditions without biologically-based screening tests. Doctors do not have effective brain scans, blood tests, or other tangible biological screening tool to identify which patients are affected by biologically-based mental illnesses. Instead, they try to use patients’ perceptions and behaviors to discern the presence or absence of a biological condition. It is the equivalent of trying to determine whether a patient has a broken leg by asking them if they can walk or if they are in pain. If we were forced to apply that method of diagnosing broken legs, one would expect to find a number of books decrying the number of casts on people that did not need them and the number of people in need of casts that are forced to go without.

We must find a way to foster the development of biologically-based mental illness diagnostic tools. There are many ways of going about this task and many of them would likely succeed. Personally, I recommend establishing a Mental Illness Screening X Prize, similar to the multi-million dollar prizes that have been used to stimulate innovation in commercial space flight and fuel efficient vehicles. The winner of the Mental Illness Screening X Prize would be able to use a biological test to determine whether a person has either schizophrenia or bipolar disorder.

That biological test would be a major step toward revamping our broken mental illness treatment system to address many of the legitimate issues that Dr. Angell described in her article. With the billions of dollars that our nation spends on treating these conditions each year, it is time to make the development of that screening tool a priority.

Matt Kuntz, JD
Executive Director
NAMI Montana

Tuesday, June 14, 2011

On Mental Illness: Delusion

This is our first blog post by Kathie Harrison, a Bozeman writer who lives with serious mental illness. NAMI Montana is honored to count Kathie as a supporter and we're happy to share her views with the world.


On Mental Illness: Delusion

I saw A Beautiful Mind and began to compare experiences. He was living as a spy in the cold war and acting on information from television and news reels. I had believed the world is a criminal delusion and I have not, to my knowledge, broken the law and as of this writing have not been arrested. I am a consumer.
I had two perceptions at once. I observed typing errors in paperwork, credentials, and mailings that looked like I was being framed so my identity would be stolen or I could be replaced. The facts were convincing me I might be in a criminal system. My cousin, a sheriff deputy, once asked me “How do I approach people like you?” I told him to remember we are reacting to something in our brain.

As with most of the mentally ill I hear voices. I was untreated for three years. In that time I was homeless a month; I was being told to steal an infant and hide. Voices urged me to kill others. I got help even though I never spoke of my experiences. My voices had me in fight; flight, or freeze mode as a counselor told me. Talk, you die! And so I was silent many years. The three F’s ran me. On rare occasions voices comfort compliment and are supportive.

I lived delusional for twenty-five years. Stigma keeps a lot of people silent and I thing also the fear of being laughed at and disbelieved. Paranoid Schizophrenic was my first diagnosis. Paranoia meaning living in fear, schizophrenia meaning one works well alone or likes to be solitary. The first thirteen work years I had I changed jobs may times; my last job lasted six to ten years, You can train people to be more social in the clubhouse setting, and in a job with the public. I am now diagnosed a schizoaffective bi-polar disorder.

Ridiculous is what the mentally ill face when they expose their story. We had a saying in the sixties, “Let all hang out!” Most of what our voices tell us never happens. Mean teasing could follow. I have sixty years of experiences to talk about. I am going to write more often and make a book of collective writings. Perhaps they’ll be in print and read. Life can turn on a dime as a friend said once. Another friend died and the lesson is; do it now; no one knows their future the paranoia is completely gone.

Kathie Harrison

Monday, June 13, 2011

Thoughts for a Rainy Day

It's flooding two blocks from my front door and the rain is coming down. I can't think of a better thing to do than share my thoughts on serious mental illness and advocacy.

COMMENT: Treating serious, disabling mental illness is difficult. Having a family member living with serious, disabling mental illness is more difficult. Living with a serious, disabling mental illness is most difficult.

QUOTE FROM THE NAMI FAMILY-TO-FAMILY EDUCATION CLASS: Perhaps the best definition of advocacy was voiced by Eleanor Roosevelt (quote): "You must do things you think you cannot do." In facing the stigma and shame that still surrounds mental illness, we are tested by many challenges Each of us has to break through boundaries of fear and convention to help our family members; each of us has felt the discrimination that exists against people who have brain disorders. In our struggle to "stand with" and "stand up for" our loved ones, we are all advocates.

FRIDAY, JUNE 10, 2011: I received a call from a women in Colorado whose brother-in-law is receiving mental health services at the Center for Mental Health in Helena. He has been diagnosed as suffering from schizophrenia and/or bipolar disorder. He has received services at the Montana State Hospital and the Montana State Prison. He was a part of the ACT Team in Helena, but was released from the ACT Team because he was probably non-compliant and the ACT has recently undergone structural changes. Several days after being released from the ACT Team he attempted suicide and was committed to the Montana State Hospital. After six days in the MSH he was scheduled for release. With the help of NAMI National she was able to compose a letter and he was kept in the hospital for sixty days. He has been released, but not returned to the ACT Team. He tried independent living, but was unsuccessful. "He was living in deplorable conditions." He has since been living in a foster care facility and doing relatively well. She would like to find a private therapist because she does not think one hour a month is adequate for therapy and has asked me to help her find a private therapist.

SATURDAY, JUNE 11, 2011: I received a call from a mother in California whose son has been receiving services at the Western Montana Mental Health Center in Bozeman. he has been diagnosed with schizophrenia and substance abuse disorders. He has been non-compliant and was sentenced to the WATCH Program at Warm Springs after his 4th DUI. He also was in the prerelease program, but was non-compliant because he was not responsible and accountable. He has been transferred to the Montana State Prison because he has failed to comply with the goals of the program. He has not contacted his mother and his mother has been told she may not visit him for 45 to 120 days until he is processed. If the underlying mental illness is not treated appropriately, prerelease and substance abuse treatment will never be successful.

DISCLAIMER: I have been in the Montana mental Illness treatment system for almost 27 years and realize emotional family members do not always relate events as they actually occur. However, this is their perception of events as they unfolded.

The treatment of serious, disabling mental illnesses is very difficult. But, a definition of insanity is: "Doing the same things over and over again and expecting different results." Last Thursday the census at the Montana State Hospital was 156. This is the lowest census in years. Those with an optimistic view would say this is due to improved community services and transition services out of the hospital. Some of us with a skeptical point of view would point to the fact that it has been more and more difficult to commit individuals with mental illnesses, who are in psychiatric crisis, to the Montana State Hospital. Commitment laws make it more and more difficult to accomplish early intervention and treatment. It may also be that more people at the Montana State Hospital are being transferred to the Montana State Prison and thereby lowering the census. The questions is? Does the Montana State Prison have the resources to adequately treat and care for those mentally ill individuals who are being transferred to their care. The Department of Corrections has the obligation to protect our society from those who might harm us. But, do they have the resources and training to treat the increased numbers of mentally ill they are receiving?

We are approaching a time of limited resources and funding to treat those who live with serious mental illnesses. We are rationing treatment and medication although it is not called that. Maybe we should spend our resources on those who suffer from mental illnesses in their teens and twenties when recovery is more possible. Then we would spend our funds to just maintain individuals in their 30's, 40's 50's and 60's who are so much a part of the "revolving door" that is characteristic nature of these illnesses. Just a provocative thought!

NAMI family members need to advocate for their mentally ill family members who live with serious, disabling mental illnesses because there are very few out there who are capable of understanding our lived experiences.
Dr. Gary Mihelish, President
NAMI-Helena

Tuesday, May 31, 2011

The Keys to Preventing Relapse, Rehospitalization, and Reincarceration

Last Friday morning a small group of NAMI-Montana members had an opportunity to participate in the NAMI Adult Issues Conference Call with NAMI's Medical Director, Dr. Ken Duckworth. The guest was Dr. Peter Buckley, Dean of Georgia Health Sciences University and one of this country's leading researchers on schizophrenia

Dr. Buckley shared the most important aspect of treating schizophrenia, and where the current emphasis is placed, is on the early detection and treatment of the illness. On average it takes one year after the onset of the illness to initiate treatment. We know that schizophrenia is not preventable. But, with early detected and intervention, cognitive deficits can be prevented and long term disability can be minimized. The goal is secondary prevention to prevent relapse and promote recovery.

Many think that schizophrenia is the most debilitating of the serious mental illnesses. Our treatment dollars are spent on crisis management and hospitalization. If we could save treatment dollars for recovery services instead of crisis services it would be a better world.

I asked Dr. Buckley what he thought would be the best policies to prevent relapse, rehospitalization and reincarceration. Without hesitating he said, "PSYCHIATRIC ADVANCED DIRECTIVES and ASSISTED OUTPATIENT TREATMENT (AOT). The wonderful thing is that these two policies have already been legislated in Montana.

PSYCHIATRIC ADVANCED DIRECTIVES: Legislation just passed the 2011 Montana Legislature which would promote Psychiatric Advanced Directives. This legislation was developed by those people who live with serious mental illnesses to be a part of their treatment for their illnesses. Nobody knows better what medications and therapies work best for the treatment of their individual mental illnesses than the people receiving treatment. For too long their input and wishes have been ignored. Now, the real test will come. Can Psychiatric Advanced Directive be implemented in such a way that they are useful, helpful and meet the needs of those individuals who so desparately wish to participate effectively in their treatment?

ASSISTED OUTPATIENT TREATMENT: Assisted Outpatient Treatment, or Community Commitment has been a part of Montana law since at least 1999. The problem is that mental health professionals and county attorneys rarely use it. For fear of laws suites from civil rights lawyers this effective treatment is underused. Studies in New York and North Carolina, which have AOT, have shown that it reduces relapse and recidivism at state hospitals, jails and prisons. This is the treatment families desperately need when their loved one suffer from anosognosia, are not compliant with their treatment and become "frequent flyers" in the revolving doors on the mental illness treatment system.

So, if one of our country's leading researchers feel that PSYCHIATRIC ADVANCED DIRECTIVES and ASSISTED OUTPATIENT TREATMENT of the most effective programs to reduce relapse,recidivism and disability, why can't they be implemented in Montana to improve our mental illness treatment system?

Individuals living with serious mental illnesses want effective Psychiatric Advanced Directives.

Families of individuals who deny their illnesses need Assisted Outpatient Treatment for non-compliant family members.

Who is going to be our champion!


Dr. Gary Mihelish, President
NAMI-Helena

Monday, May 9, 2011

Thoughts on Mothers Day

Since 1997 Sandra and I have taught the NAMI Family-to-Family Education Program to over 500 Montanans. During those classes I have come to the conclusion that having a serious mental illness in the family is an extreme burden to families, especially mother's. "In mental illness, our grown children regress to an earlier, desperately frightening stage of need. Mothers hastily adopt the old mode of mothering; all the care taking alarms go off when their child fails to thrive. This is why mothers have a hard time pulling out of the care-taking role. Because they have to keep themselves together and protect, they cannot risk letting down into grief: and to mothers, letting go of grief often fells like they are abandoning their own flesh and blood."

Several days ago I received a message from a Montana NAMI Mommy. We all may realize how difficult and traumatic it must be to live with a serious mental illness. The effects of serious mental illness are devastating and traumatic to the individual living with a mental illness. The stigma, discrimination and the isolation of being treated as a second class citizen is life altering. Many "normals" do not understand this same stigma and discrimination extends to the families of the mentally ill.

I've attached this NAMI Mommy's message to heighten that understanding:

Sandy, I have been thinking of you & Gary earlier tonight...our daughter stopped over and though she is feeling somewhat better on her new meds , after being recently hospitalized for about a week. and is now SLEEPING at night.

She struggles with portioning her day, & sometimes is looking groggy. I'm glad she doesn't drink, because it looks like it! Earlier this evening, she went for a coke with a girl friend, & sometimes it's REALLY hard not to compare her life, with her friend's, who is successful, makes $80K or more a year at her regular job. Lost 80# so far, is training for a marathon, & says life is so good.

I know my daughter and her husband have a very thin financial thread. To try to make ends meet until the end of the month, especially since both of them are on SSI. She's having a heck of a time losing any weight at all, & it's all she can do to stay ALIVE. And stay WELL, & be somewhat optimistic...I guess regular people have no idea what persons with "mental problems" endure, unless they have had it in their own family. WE family members also suffer right along with our "person."

I'm reading "Stop Walking On Eggshells" now, book and workbook which has been recommended to me. What a MAJOR task for me to try to Mind my Own business, and not obsess over her. Or even buy them all their groceries, and CLOTHES. It's hard to find clothes to FIT her now as she's 5X...

Anyway, thanks again to you & Gary for ALL YOUR NAMI WORK, and that I was blessed to be in your classes. Little did I know that I'd have to learn and RE-learn those lessons, that would be coming up, & re-occurring again and again...


So, on Mother's Day, to all of you NAMI Mommies: Never give up and NEVER, NEVER, EVER give up HOPE!

HAPPY MOTHER'S DAY!!!! YOU ARE ALL THE BEST!!!!!!!!!!!

Gary Mihelish

Wednesday, April 27, 2011

Frustration, Anger, and Hopelessness

Many people cannot understand why NAMI people are frustrated and angry so much of the time. Almost every day, or at least several times a week, we receive phone calls and e-mails from NAMI members totally frustrated by the "mental illness treatment system." With permission I would like to share an e-mail we received last Friday.

Hello Gary & Sandy,

My daughter who is 30 years old was committed to the state hospital in nearby state. While waiting for a bed she broke out of the private hospital they were holding her in until a bed was ready. She was caught and booked into jail and the next morning she was released on her own; homeless with no meds. Two days after getting out of jail she was again arrested with 4 felonies that carry life sentences. i was down there in January with my wife and helped her get into a hospital for treatment. She had an assessment done by the county mental health folks there back then and I talked to them and told them she was a danger to herself and others, but they let her go and that's when she went on a crime spree. She has lost her home and her three children now and the mental health professionals agree they made a mistake in not committing her back in January.

I am so tired of the broken mental HELL system. She has catastrophic PTSD, severe depression, poly substance abuse issues and Bi-Polar,..right now she is in the county jail with no meds. Oh, she tried to kill herself in jail a few weeks ago and was flat lined and taken to the hospital, then put back into treatment and then committed to the State Hospital when she broke out.

There is no cure for mental illness at this time. Successful treatment is extremely difficult, but it is possible. I have been in Montana's mental illness treatment system for over 26 years. After our family's 7 years of Hell we were able to get a diagnosis and develop a relationship with caring, compassionate, competent mental health professionals. Things have only gotten better, but we are not the average family who gets involved in this system. We were fortunate to have mental health professionals who believed in the collaborative treatment model which involved the individual with the illness and the family in developing a plan to manage serious mental illness.

When will ALL mental health professionals embrace the collaborative model? When will individuals with mental illness and their families be recognized as part of the solution and not the problem? Montana's Olmstead Report (Which is gathering dust on a shelf somewhere) concluded what is really needed to improve and change Montana's mental illness treatment system is a change in attitude.

And, until we see that change in attitude, Montana's individuals living with serious mental illness and their families will continue to be frustrated, angry and feel hopeless.

Dr. Gary Mihelish
NAMI Montana's Director of Government Affairs