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Psychosis Survey: Twenty Percent Say No One Helped; Dramatic Difference Exists in Family Perceptions of Symptoms; NAMI Launches Website to Bridge the Gap

ARLINGTON, Va., Oct. 6, 2011 -- The National Alliance on Mental Illness (NAMI) today released a report, First Episode: Psychosis,based on a survey in which approximately 20 percent of both individuals who experienced psychosis and family and friends indicated that "no one" helped in their time of crisis.

The survey also revealed a dramatic difference between individuals who experienced psychosis and family and friends over who first knew something was wrong and help was needed.

The 12-page report accompanies the launch of a special website, www.nami.org/psychosis, providing extensive resources to help bridge the gap between the appearance of symptoms and medical intervention.

Psychosis strikes an estimated three percent of people in some form during their lifetimes.

"Individuals and families who experience psychosis often experience a high level of isolation and despair," said NAMI Executive Director Michael Fitzpatrick. "They don't know what to do. They don't know where to get help."

"Psychosis is not a diagnosis, but a symptom," said NAMI Medical Director Ken Duckworth, M.D. "It may be transient, intermittent, short-term or part of a long term condition, including major depression, bipolar disorder and schizophrenia. Typically it involves delusions or hallucinations."

NAMI's First Episode report is based on a July 2011 online survey of individuals who have experienced psychosis (1,215) and family members and friends (2,882).

  • In the survey, "no one" was the single greatest response to the question of who had been "most helpful" during what one person called a "soul-wrenching experience."
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  • For individuals who experienced psychosis, other responses included parents (18 percent), psychiatrists (11 percent) and a psychologist, therapist or social worker (10 percent). Family and friends listed the same mental health professionals in slightly lower proportions.

"The dramatic difference in the perceptions of individuals who experience psychosis and those of family and friends over who first recognized that something was wrong may illustrate the complexity of symptoms and the challenge of discussing them openly," Duckworth said.

  • Approximately 40 percent of individuals who experienced psychosis said they were the ones who first recognized symptoms, while 18 percent credited family and friends. Approximately 50 percent of family and friends said the family knew first, with only 13 percent crediting the person who experienced the symptoms.
  • Less than 5 percent of health care providers were indicated as having recognized symptoms, a few points lower than "first responders" such as police or emergency medical technicians.

One point of strong agreement: both individuals who experienced psychosis and family and friends—approximately 50 percent each—identified the Internet as an important source of information. Others included mental health providers, support groups, family and friends.

"When a crisis occurs, health care providers are often downstream in the process," Duckworth noted. "Psychosis usually reaches a crisis point before it ever reaches the doctor's office."

"The challenge is to reverse the process. Greater education, greater recognition of symptoms, greater understanding of what to do, as well as a more welcoming mental health care system is what's needed," Duckworth said.

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About NAMI
NAMI, the National Alliance on Mental Illness, is the nation's largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raising awareness and building a community of hope

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SOURCE National Alliance on Mental Illness

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