NAMI North Carolina Insights November 2003

Young Families INSIGHTS

November 2003

Linda Swann, NAMI NC Young Families Program Coordinator, Editor

NAMI CONVENTION HIGHLIGHTS
By Diane Weaver, NAMI North Carolina
Western Region Education Coordinator

A NAMI convention is a whirl of hundreds of available expert lectures, ask-the-doctor sessions, exhibits, performances and art displays, and personal contacts. It is exciting. It is often overwhelming! But what draws me back year after year is the sense of community. NAMI is one big family, with grandparents, adults, and children. Many of the scientists who speak have siblings or other close relatives with brain disorders; they share our passion - both our hope and our anger. You can meet a complete stranger at a NAMI convention and have instant rapport.

Most exciting of all, consumers are increasingly taking the lead at the national level.

Each year I think, "Maybe it's not necessary to go this year," but I am always wrong. The research findings themselves are priceless. They enable me to come back and advocate for evidence-based practices. They enable me to assure parents that they did not cause the disorder. They enable me to understand a smidgeon of what is going on in neuroscience. I am able to convey great hope to my children.

"C" WORD USED BY LEADING SCIENTISTS For the first time, virtually every major speaker said that cures for mental illnesses are foreseeable. No one knows when - and it won't be soon - but they are foreseeable. In the meantime, brain disorders remain treatable - but not curable - and treatments are improving. Medications in the pipeline are expected to reduce side effects and speed response. It may be possible in the near-to-mid future to use imaging for diagnosis, and/or to use a blood tests to determine which medications a particular patient is most likely to respond to. This would alleviate the lengthy trial-and-error process now used.

MEDICATIONS MOVE INTO THE CELL Most psychoactive medications take weeks or months to reach their full effect. Existing medications tend to work outside the neuron (nerve cell), acting upon neurotransmitters in the gap between cells or upon receptors on the cell surface. Research is now focusing on the cell's interior, where a complex chain of reactions affects gene expression. For example, a medication of the future would act immediately to turn off (or on) the expression of a particular gene in the cell nucleus. This, in turn, would alleviate symptoms without a time lag.

KNOWN MEDICATIONS STUDIED FOR TREATMENT OF MENTAL ILLNESSES Both new compounds and known compounds are being studied. Mifepristone, a glucocorticoid receptor antagonist, is better known as RU486; it may have antidepressant and positive cognitive effects in patients with mood disorders. Tamoxifen, a breast cancer treatment, dampens protein kinase-C, a substance suspected in mania. If they are found effective, scientists will use these existing medications as a starting point to develop a medication targeted specifically for bipolar. Some Alzheimer's drugs are being studied for use against mental illnesses. Conversely, lithium - used to treat bipolar disorder - is being studied for use in Alzheimer's since it seems to protect neurons

LITHIUM AND DEPAKOTE PROTECT NEURONS Research now uses MRI scanners with magnetic fields almost five times stronger than ordinary MRIs. A research MRI at University of Minnesota has a field strength of 7 Tessla. A typical scanner has a field strength of ONLY 1.5 Tessla. With powerful research scanners, and with improved computer software to process the image, individual neurons are clearly visible. Scans of adults with bipolar reveal some neurons are shriveled. They are not dead, but have few connections. When the adult receives either Lithium or Depakote, the cells become normal in appearance and grow new connections. This suggests that Lithium and Depakote protect neurons. The protection may occur with childhood onset bipolar as well, but studies have not yet been done.

INTEGRATED TREATMENT ESSENTIAL Teens with both mental illness and substance abuse disorders should be treated simultaneously by the same professionals for both conditions. Too often, community practice requires a teen to be substance-free before mental illness is treated, and also requires that teen to be "motivated" before acceptance into substance use programs. The teen becomes a ping-pong ball batted between the mental health and substance abuse programs, but never treated. Substance abuse combined with mental illness is a recipe for violent behavior. (Mental illnesses alone do not necessarily lead to increased violence.) This bureaucratic chasm, through which many teens drop, must be eliminated. How many teens wind up in juvenile justice because the treatment system has unnecessarily rejected them?

PERSONAL OUTCOMES MEASURE QUALITY How can we measure the quality of mental health services? Customer satisfaction questionnaires are inadequate, often biased by the questions asked, the customer's reluctance to seem critical, and the method of data collection. Personal outcomes, on the other hand, measure the actual changes in a person's life. How much has that person's life improved in terms of his/her own personal goals? A program in Collier County Florida used training and materials from the Council on Quality and Leadership to empower selected consumers to visit and interview other consumers. The interviewers were paid. Supervisors, consumer interviewers, and consumer interviewees reported positively on the process. This process could easily be used to train parents of children and adolescents with brain disorders to interview other families to measure treatment outcomes. I hope North Carolina communities seriously consider using this process the measure treatment quality.

CONFERENCE CASSETTE TAPES AVAILABLE! To purchase recordings of sessions from the NAMI 2003 convention, contact the Conference Cassette Company at 1-800-556-0208 for a free catalog.

The Elimination of Barriers Initiative (EBI) in North Carolina
Fighting the Stigma of Mental Illness in Youth

Jason Gosnell, an adolescent from Madison County participated recently on a panel with other youthful consumers. Jason told the one hundred plus audience of educators, child advocates, child/adolescent-serving agency personnel, and family members how his friends began to "slip away" from him when he became depressed in middle school. He was later diagnosed with bipolar disorder and high functioning autism. His mom, Terri, is a strong advocate for young families in Madison County. She was understandably proud of her son and his ability to articulate so clearly what it is like to develop a neurobiological brain disorder as a young person.

The panel that Jason was on was an integral part of a meeting in North Carolina to kick off our Elimination of Barriers Initiative. Our state was one of eight chosen to participate in this pilot social marketing campaign whose aim is to reduce the stigma of living with a mental illness. The Substance Abuse and Mental Health Services Administration's Center for Mental Health Services (CMHS) is partnering with various public relation firms to produce and test educational materials and public service announcements on radio, television and in the print media. The Division of Mental Health/DD/SAS is responsible for heading up the three-year project in North Carolina. The program then should go nationwide.

The primary target audience in North Carolina is high school educators. North Carolina will have a marketing plan tailored to meet the unique needs of our citizens. A tool kit will be developed by Vanguard Communications, Inc. that can be utilized by high schools across our state. There will be an evaluation component and technical assistance.

What does all this mean to us? It should be good news that the campaign to end stigma continues. We will have new tools to use in fighting stigma and we're not limited to focusing on high schools. Talking to educators and other child-serving agency personnel is already a priority with NAMI North Carolina. As a matter of fact, over the past year we have started doing workshops on preschoolers with these disorders. This is a big part of what your Young Families Program is about. Over 1000 teachers and other personnel attend our workshops on "Understanding Serious Emotional Disorders in Children and Adolescents" every year. "Breaking the Silence," a curriculum for schoolteachers, is also available from NAMI Queens/Nassau. In this effort North Carolina will have a variety of educational tools from which to choose. Expect to hear more about this important initiative in the coming months.

Did you know?

By the year 2020 - childhood neuropsychiatric disorders will rise proportionately by over 50% to become one of the five most common causes of morbidity, mortality, and disability among children. (World Health Organization, 2001)
Suicide is the third leading cause of death among 15 to 24 year olds and is responsible for more deaths in this age group than all other illnesses combined. (Institute of Medicine, 2002 and Surgeon General, 1999)
An alarming 65% of boys and 75% of girls in juvenile detention have at least one psychiatric diagnosis. (Teplin, L. Archives of Psychiatry, vol. 59, December 2002)
20% of children and adolescents in the United States have a mental illness. In any given year, only 1 in 5 receive mental health services - up to 80% fail to receive critically needed treatment. (Surgeon General's Conference on Children's Mental Health, 2000)
The US has a shortage of child psychiatrists. Our nation currently has approximately 6,300 child and adolescent psychiatrists. We need of 32,000. (Work Force Report on American Academy of Child and Adolescent Psychiatry web site at www.aacap.org.)
The impact and prevalence of mental illnesses cannot be ignored. When compared with all other diseases, including cancer and heart disease, mental illness ranks first in causing disability in the US, Canada, and Western Europe. (WHO, 2001 and Interim Report of President's New Freedom Commission on Mental Health, 2002)

Source:

NAMI, "Broken Promises and the Health Care Crisis: Children and Adolescents with Mental Illnesses," March, 2003)

How Teachers Can Help: Understanding How Families React to Their Child's Mental Illness

Here are some suggestions that teachers can follow as they build relationships with the parents of children with mental illness. It is helpful to remember that parents often find themselves on an emotional roller coaster. They often begin by experiencing shock and move on to grappling with understandable denial, to anger and grief, and finally, to recognition and acceptance. In other words, they are "all over the page" emotionally. And most likely each parent or caregiver will be at a different place emotionally. That can often lead to more stress.

Remove feelings of blame. Parents already feel a lot of guilt and can be sensitive to any references that they are to blame for their child's brain disorder. It is helpful for educational personnel to remind parents that this is not their fault. These are no-fault brain disorders as research so clearly shows.

Acknowledge their feelings as normal. Remind parents that others would experience similar feelings. It makes sense that parents hesitate, feel frustrated, and even get angry at times.

Let parents know you sympathize with them. This empathy can go a long way toward building a relationship with parents.

Work toward removing the stigma of mental illness, every chance you get. Having a mental illness or brain disorder should be nothing to be ashamed of, any more than one would be ashamed of having diabetes or asthma.

Emphasize that early intervention and treatment lead to better outcomes, to better a quality of life. Tell them that early treatment can lead to a less severe brain disorder, can avoid a more severe form of the illness later in life. Stress that treatment works!

Be especially sensitive to parents with special concerns, like single moms, parents working at poverty level, or parents of different ethnic backgrounds. These parents may face unique challenges.

Give parents resources. Encourage them to find a support group like NAMI Young Families. Urge them to read everything they can about their child's disorder and possible treatment options.

Source:

"Teachers and Parents as Allies: Recognizing Early-Onset Mental Illness in Children and Adolescents," Joyce Burland, Ph. D.