First Episode Psychosis: A Call to Arms

MAR. 13, 2017

By Mary Giliberti, J.D.

A few years ago, the young daughter of one of my closest friends was diagnosed with cancer. It was a serious illness and it received a serious response from her health care providers. They recognized the need to act quickly. The family received assistance and she got comprehensive care and is now a healthy teenager. 

In contrast, many young adults experience the symptoms of psychosis, often in the early stages of schizophrenia. This too is a serious condition, but it rarely gets a serious response. Generally, individuals do not get care until they are very sick and are hospitalized. Follow-up care is often only a prescription and a recommendation to find a psychiatrist. Families get little to no information and the results are predictably poor.

But it does not have to be that way. Research has led to the development of programs that provide the comprehensive care that we should expect for a serious mental health condition. Now we must get this care to everyone affected. 

Approximately 100,000 young adults experience psychosis for the first time every year. Acting quickly to connect a person with the right treatment during early psychosis—also called first episode psychosis (FEP)—is essential to secure a successful future for these young people. Onset typically occurs in late adolescence and early adulthood so time is of the essence.

Unfortunately, in the Unites States, there is an average delay of 74 weeks before a person receives treatment for FEP compared to 2 to 7 weeks in Europe. In some cases, it’s because young adults, families, school personnel, and even primary care physicians don’t immediately recognize the warning signs:

  • Hallucinations: hearing, seeing, tasting or believing things that others don’t
  • Delusions: persistent, unusual thoughts or beliefs that can’t be set aside regardless of what others believe
  • Suspiciousness or extreme uneasiness with others
  • Strong and inappropriate emotions or no emotions at all
  • Withdrawing from family or friends
  • A sudden decline in self-care
  • Trouble thinking clearly or concentrating

In 2015, the National Institute of Menth Health (NIMH) released a study on “Recovery After an Initial Schizophrenia Episode” (RAISE) which focused on delivering coordinated specialty care (CSC) for youth and young adults who experience FEP. The study found that those who enrolled in CSC-FEP programs had greater improvement in symptoms, stayed in treatment longer, were more likely to stay in school or working and were more likely to stay socially connected than those who received only basic mental health care.  The faster they got into the program, the better the outcomes.

CSC-FEP programs are tailored to the individual through these services: case management, medication management, psychotherapy, family education and support, supported education, supported employment and peer support. The “secret sauce” of these programs is the help with education and jobs. The research shows us that young adults want to have the same opportunities as their peers and they will continue in treatment if it helps them meet their life goals. 

Congress recognized the benefits of CSC-FEP programs and doubled funding levels to states for them—requiring annual “set asides” of 10% from community mental health block grants. This money helps with training and limited program costs, but is not enough to meet the need for care.  States like California, New York, Ohio, Oregon and Virginia are also supplementing federal grants with state dollars. 

The challenge today is expanding and funding FEP-CSC programs so that every young person experiencing early psychosis has access to effective care. Toward that end, NAMI has published First Episode Psychosis Programs: A Guide to State Expansion. Intended for NAMI advocacy leaders it also is a resource for broader mental health coalitions. Expansion of CSC-FEP programs is a goal for our entire movement. The guide includes “nuts and bolts” tools for an advocacy campaign—including how to estimate the number of programs needed in a state.

When psychosis is involved, help is needed as soon as possible. Providing it should be a priority in every community. Together, we can ensure that a serious condition always gets a serious response.


Note: This blog also appears in the Huffington Post.

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