2001 National NAMI Conference 

Washington, D.C. 

July  11-15, 2001

PEOPLE LIKE US 

Ed Knight PhD, at a NAMI forum, said that research has found that consumer-run groups performed consistently better than other services, reducing hospitalizations by 50 percent and time in hospitals by two-thirds. If you saturate an area with consumer-run services, Dr Knight said, there is less of a need for other services. Dr Knight has been there and back. Diagnosed with schizophrenia in 1969, he has been hospitalized 18 to 20 times, been in jails, and been homeless. Atlanta, he says is the best city to be homeless in. New York, on the other hand, sucks. 

Dr Knight has started 600 support groups and 40 consumer-run groups in New York state. In 1997, he moved to Colorado to join the Colorado Health Networks, a partnership between a managed care company and eight community mental health centers. One of the groups he has been part of, Double Trouble in Recovery (for those with dual diagnosis), has a greater impact on meds compliance than supported housing. 

Why self-help works, according to Dr Knight, is that social networks formed with each other are much better than those anywhere else. For instance, he found himself stigmatized in other 12 step programs, whereas in Double Trouble he could come to grips with the reality of losing his family. 

In consumer run groups, he says, we change roles. Instead of being passive, we actively cope and we share coping behaviors. 

Moe Armstrong, a mental health advocate from Cambridge, Mass, recalls being told there were no openings for a mental health position, even though there were notices posted down the hall. Consumer run programs, he said, are an idea whose time has come, but is not yet accepted. Only five percent of mentally ill people work in mental health. (Massachusetts with eight percent has the highest rate.) 

Carol Evans PhD, Director of the Child and Family Services Division of the Missouri Institute of Mental Health, St Louis, had these pointers: Make sure everyone in your organization knows what your mission is (as opposed to each person just knowing what they have to do), know who is in charge, have a plan for managing conflict (it will happen), know who your partners are and how they can help you (eg a treasurer from one organization can mentor a treasurer from another), and have a Plan B for someone who can step in. 

Bill Quinn, Executive Director of the Circle of Life in Derry, New Hampshire, is responsible for 11 independent programs, all staffed 100 percent by consumers.. Of an estimated 6,500 consumers in New Hampshire, some 3,200 are members of peer support centers. People who came to peer support, he said, wanted something different from professionally-run groups, and attendance went up when they got this feedback and changed. 

Bill related the story of a woman who volunteered to do a support group. Bill told her it was a paying position. The woman responded, "I can't do that. My therapist said I'm not ready for work." She now works 20 to 30 hours a week. It's her first job in 16 years, and she now has full custody of her 15-year-old. 

GENE QUEST 

Raymond de Paulo MD of Johns Hopkins spelled out for a NAMI session the current state of gene research at Johns Hopkins. First, finding genes for bipolar is hard. There is probably not a single gene that causes bipolar, he noted. More likely, we are dealing with several genes, each gene having a modest effect, which means flushing them out will not be simple. Nevertheless, "when we find the first one, things will move very quickly." 

One thing researchers at Johns Hopkins are doing is teasing out differences in bipolar to see if certain traits can be found in certain genes. For instance, one study noticed bipolar II was clustered in families. In chromosome 18q21, there was a sharing of alleles (one of two or more alternate forms of a gene) in 82 percent of the relatives. A random figure would have been 50 percent. 

Another study has found that among a certain group of family relations, there is a 35 percent rate of psychosis. Chromosomes 10, 13, 18, and 22 are suspect in both bipolar and schizophrenia. Perhaps, then, bipolar and schizophrenic populations share psychotic genes. 

Eventually, our knowledge of genes will be used to illuminate the pathology of mental illness and find targets for rational treatment, something equivalent to giving insulin for diabetics - it's not a cure but it's smart. That's why we have spent 14 years looking, he let his audience know. 

MORE 

Dr de Paulo also observed: "I got my first lecture on [the antidepressant] Celexa in 1972. We're not going to get to the right treatments until we understand the disease. If you don't know what you're looking for, you're not going to find it."

- excerpts from McMan's Weekly Volume 3, #29.

More highlights from the NAMI Conference.

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