It may come as a surprise that each person is at risk of experiencing a psychotic episode—you, your kids, everyone. Usually, psychosis is associated with schizophrenia or a different mental health condition, but it can also be the result of trauma, substance abuse or a physical illness or injury. “[Any] person is capable of psychotic symptoms given the right circumstances,” according to Sarah Deal and Valerie Alt, two psychotherapists trained in Cognitive Behavioral Therapy for Psychosis (CBTp).
Psychosis can cause hallucinations, delusions and changes in how the brain processes information and the ability to distinguish what is real and what isn’t. Experiencing this for the first time (referred to as first-episode psychosis, or FEP) is often frightening, confusing and distressing. Sadly, about 100,000 young people experience FEP each year.
For these 100,000 people, treatment options can seem bleak. And the longer the duration of untreated psychosis (DUP), the more challenging it is for someone to recover from psychotic symptoms. Ideally, a person would receive service and supports within two years of FEP. This leads to better outcomes and keeps young lives on track.
Thankfully, the National Institute of Mental Health (NIMH) conducted a study—the Recovery After an Initial Schizophrenia Episode Early Treatment Program (RAISEETP)—that revealed the most effective form of treatment for early psychosis.
Coordinated Specialty Care Programs
Study participants treated by coordinated specialty care (CSC) in RAISE-ETP showed significantly better outcomes than those treated by standard mental health services. The CSC participants remained in treatment longer and experienced significantly greater improvement in quality of life, symptoms and involvement with work and school.
Coordinated specialty care programs are a team-based approach to treatment in which individuals and families play a meaningful role on the team. These programs coordinate psychiatric and primary care in a holistic treatment approach.
“One thing that is pretty outstanding is that the CSC programs are person-centered. Young adults are the drivers of their treatment,” says Michael Haines, a young adult in recovery from psychosis who works as a peer-support specialist for a CSC program.
Key Components of CSC Programs
Family Support and Education
Families can play a key role in recovery as part of the treatment team. They value education, information and skills that can help them support their loved ones. In FEP programs, that is exactly what happens: Family support and education is give families the information and skills they need to aid their loved one’s treatment and recovery.
“It’s important to understand that relationships with family and friends may be the only relationship a person with psychosis has,” says Haines, “and that support means the world to them, even if it doesn’t show at first. It may not be until a year or two down the line until they are able to recognize that and put it into words, but to have that support can make all the difference.”
Understanding symptoms and developing coping skills that will help the person manage his or her condition is also an essential part of treatment. Currently, the form of psychotherapy that is broadly recommended as a first line of treatment for psychosis is Cognitive Behavioral Therapy for Psychosis (CBTp). This type of therapy is designed to reduce the distress caused by psychotic symptoms and help individuals gain perspective into how they view the world and their own experiences.
The objective of medication management is not only finding what medication is best for the individual but also finding the lowest possible dose so that side effects are minimized as much as possible.
Supported Education and Employment
One important component of recovery is for the person to be able to return to school or work. Supported education and employment programs can help individuals not only find work opportunities but also remain employed or in school.
One successful program that helps people living with mental health conditions return to work is Individual Placement and Support (IPS). IPS programs follow these principles:
- Open to anyone who wants to work;
- Focus on competitive employment;
- Rapid job-search capabilities;
- Systematic job development capabilities;
- Decisions guided by client preferences;
- Individualized long-term supports;
- IPS integrated with treatment team; and
- Benefits counseling included.
According to NAMI’s “Road to Recovery” report, people participating in an IPS program have significantly higher employment rates and tend to remain employed longer.
Finding other people with similar experiences to connect with can be one of the most important steps toward recovery. “Through my recovery process, [the] one thing that I really held close to me was being able to talk to other people that understood,” Haines says. It helps for people living with early psychosis to know that they are not alone and that their condition is not their fault—which is something that peer support can help them achieve.
Current Status of CSC Programs
Given the positive RAISE-ETP study findings, CSC programs should be available to all young adults experiencing FEP and their families. Unfortunately, that’s just not the case. CSC programs are expanding around the country, yet only two states have state-wide expansion. Meanwhile, 30 other states only have one or more programs and plenty of room to expand. An investment in expansion by Congress has fueled this expansion, and NAMI advocated for that congressional funding—but this kind of advocacy must successfully continue so CSC programs will be available to all who need them.
How Can You Find These Programs?
If you or a loved one is experiencing early psychosis, find out more—including if your community has a CSC program—by visiting www.nami.org/earlypsychosis. In addition, you can contact the NAMI HelpLine at 800-950-6264 or [email protected], and we will help you locate the closest CSC program in your area. If there is no treatment center or plans for a treatment center in your area, we encourage you to work with your NAMI State Organization or NAMI Affiliate to advocate for an expansion of FEP programs and services in your community.
Laura Greenstein is communications coordinator at NAMI.
Note: This piece is a reprint from the Fall 2016 Advocate.