Building a Movement for Better Early Psychosis Care

Fifteen years ago, when our son began experiencing early signs of psychosis, options for help were scarce. In order for him to receive treatment of any kind, he had to be considered a danger to himself or others. He reached that threshold when he was 18, and how did the mental health system respond? The police arrived, handcuffed him and transported him to our state’s psychiatric hospital.

During a hearing at the hospital, he was involuntarily committed. He lost his right to participate in decisions about his treatment. Our family was blocked from information or involvement.

At the hospital, the staff took a heavy-handed approach to treatment and injected him with powerful drugs twice a day or more, as needed. It took months of vegetating him in a locked hospital ward before they found an effective combination and dosage of medications. Only then was he was allowed to participate in his treatment decisions or plan for his discharge.

This experience did an overwhelming amount of damage to our son and our entire family. Yet, I consider us fortunate. After psychosis, many young people are unable to get their life back on track—they never finish school or get another job, they begin cycles of repeated hospitalizations or incarceration. Over time, some become homeless and others become victims of violence and trauma. The toll of psychosis is massive.

However…

the tide is beginning to change. We now have better outcomes and improved recovery. We now have coordinated specialty care (CSC).

CSC consists of case management, family support and education, psychotherapy, medication management, supported education, and employment and peer support. In CSC programs, those experiencing psychosis are involved in decision-making with their CSC team and focused on reaching their recovery goals. They stay engaged in treatment and often return to school or work. Families are members of the treatment team and receive the education and support they need. Peers recovering from psychosis become recovery mentors offering practical advice, understanding, acceptance and support to others.

Now that we have this model of care, we need to make it available to any person experiencing psychosis. The National Institute of Mental Health’s Recovery After an Initial Schizophrenia Episode (RAISE) study found that when addressing early psychosis or first-episode psychosis, it is imperative to reduce the time between first signs of psychosis and treatment.

The CSC movement is gaining momentum across the country, giving more and more people with early psychosis access to research-based care. NAMI is supporting this expansion in many ways. The NAMI HelpLine is prepared to support and guide individuals and families with information about early psychosis, support and referrals to CSC clinics.

While my son’s first-episode of psychosis is behind us, I’m filled with hope for the many young people and families that will have a different experience—a better experience. One that will halt the progression of psychosis and begin the recovery process early. All people deserve the opportunity to reach their dreams and achieve their goals.