October 26, 2016

By Darcy Gruttadaro


Imagine for a moment being between the ages of 16 and 25—the most common ages for psychosis associated with schizophrenia to start—and hearing or seeing things others don’t. Or maybe you have trouble thinking clearly and concentrating or you start having unusual thoughts or beliefs. As you might imagine, this would be frightening, confusing and distressing.

Similar to cancer, schizophrenia begins in stages (with psychosis developing early), and similar to cancer, providing care at the earliest possible stage produces the best results. But with psychosis, many people don’t seek help right away.  People may not recognize the signs or instead write them off as “quirky” behavior. And those who do seek help often do not get what they need and don’t bother going back.

This lack of treatment causes psychosis to worsen significantly. It often starts a downward spiral into social isolation, family conflict and traumatic experiences.

But it doesn’t have to be that way. Australia, the UK and other parts of the world recognized the need to create programs that appeal to youth and young adults experiencing early psychosis. They moved away from simply giving medication and a bit of case management to providing the intensive coordinated care and support needed for young people to stay in school, at work and connected to family and friends.

They discovered the public health imperative to reduce the time between when psychosis begins and when treatment is provided.

The U.S. followed their lead with a major study on early psychosis treatment. The Recovery After an Initial Schizophrenia Episode (RAISE) study, funded by the National Institute of Mental Health (NIMH), found that shortening the timeframe for identification and delivering coordinated specialty care to individuals ages 16 to 25 within two years of the onset of psychosis produced the best results.

Researchers are now examining the most effective ways to reduce the time it takes for a young person to seek help. They are using social media, websites, community conversations and additional methods to reach youth, families, primary care professionals and others with regular contact with youth and young adults.

NAMI has joined the national efforts to help ensure youth and young adults with psychosis are identified early and connected with First Episode Psychosis (FEP) programs delivering coordinated specialty care. We are developing resources so youth, families and communities know the early warning signs of psychosis, the need for early action and how to access effective care. We are advocating with Congress and states around the country for more FEP programs. Yes, time is ticking and we won’t give up until every young person experiencing a first episode of psychosis has the chance to reach recovery and live a full life.  

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