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.


APR, 30, 2017 09:51:10 AM
Cheryl Swanson
Reading these comments only take me back to January of 2016 when my life changed. My 20 year old son, the son who was a scholar and an athlete nearly killed my husband in the middle of the night because he truly believed that he was causing harm to me. I never dreamed that I could ever be afraid of my son but now I am more afraid for him than anything.
A little over a year and I am still trying to digest all of this. It's even harder because my 24 year old daughter was diagnosed and being bipolar with depression. I feel as if I'm being punished. Sometimes I just can't handle it at all.

APR, 03, 2017 10:07:30 AM
I am very worried my daughter (14) may have schizoaffective disorder. She was diagnosed with major depression and anxiety 6 months ago, but has been having short episodes (hours) of delusions and hallucinations for the last 2-3 months. We had a normal 24hr eeg and an MRI. Right now she is finding the hallucinations very socially limiting and has rarely been able to attend school. Are there support groups or camps for young teens with hallucinations? I know there is a program for first episode psychosis in my area, but as of now are appointments have been with mood clinics. So far meds marginally helpful at best. Any advice at all?

MAR, 31, 2017 09:56:24 AM
C ceciliani
I agree with one comment. If the person does not recognize they are ill families hands are tied. HIPPA laws need to be changed for people with mental illnesses. It's a horrible situation and incredibly scary and sad

MAR, 31, 2017 05:55:59 AM
I can feel all your pain because my daughter just recently diagnose with Schizophrenia. Psychosis is one of the first hallmark of this disease. And if we don't know what's going on with our child, it is very frightening for the family to experience these episodes. Education is the first step. You have to learn about mental illness, so you can advocate for your loved ones. That's what I have been doing since 2014. And we should let our voices hear all the way to the Congress!

MAR, 30, 2017 08:21:40 PM
Ron Kohl
"Impossible for family or friends to help" & anasognosia: Family or friends can give quality-of-life assistance in return for particular cooperation by the individual, with a common goal the individual can understand. Illness does not have to be acknowledged. See Xavier Amador's book, "I'm Not Sick...", for an example. Takes insight, work, & patience. Try and find someone who has used this approach to help you. Ask at your NAMI affiliate.

MAR, 30, 2017 08:22:55 AM
Donna Spence
My first episode was in my forties, it scared myself and my family to death. I still deal with it but rarely get too freaked out but when I do it's bad! Help!!

MAR, 29, 2017 11:58:16 PM
One of the biggest challenges is adequate care. My experience is that state-run programs are "one shoe fits all" and do not provide the life skills that must be developed.

MAR, 29, 2017 09:09:40 PM
Thanks for writing about this. What are some words that we can use when we recognize these signs so we dont become enemy of young adult child. I am lucky caseworker is so dedicated. If we didnt have this support things would be a million times worse. Caseworker got hospital permission from child and is teaching him self advocacy and acts as intermediary. He seems so clear after she talks to him. I knew my son was off for several months and all we did is mantra of dont poke the bear. Life was miserable. I wish i had read this info before.

MAR, 20, 2017 12:16:47 AM
My son who is 43 has just been diagnosed with psychosis, undetermined as yet.
It is very frightening....for the family and for my son. It breaks your heart.

MAR, 17, 2017 02:42:32 PM
My grandson has mental problems since he was 3 they put him on adhd meds and had some psychiatrist alter meds but he slip through the cracks of getting proper treatment. He is now in his twenties is there anything we can do to help him . He is dangerously depressed I'm afraid he will do something to hurt himself. He needs someone other then family to help.please can someone direct me to the proper people that can really help us.

MAR, 14, 2017 11:49:22 AM
Your lips to Gods ears. My poor daughter.

MAR, 14, 2017 11:04:58 AM
Having all these plans in place for first episode psychosis with adults is great, but one of the main issues that is not mentioned is anasognosia. The affected person doesn't realize that he/she has an illness that needs to be treated. With current HIPAA laws, it makes it impossible for family or friends to help even with the best laid plans. When HIPAA is changed so that family and friends can help, programs like this will be beneficial but until then, they will not be effective.

MAR, 13, 2017 07:00:24 PM
Young Chul Chung
It is great to see the support for the FEP from the NAMI. In Korea we have also NAMI. But they are unaware of this important issue. I want to adk you to send a encouraging letter to the Korea NAMI if possible.

MAR, 13, 2017 03:12:45 PM
I started having psychosis after my mom died. I was 30. To this day its not often that I get the real help that I need. All anyone seems to want to do is just play with my meds. It's sad really.

MAR, 13, 2017 01:41:11 PM
This article is so important: to educate parents BEFORE psychosis hits. When the first episode of psychosis hits, parents have NO CLUE what is happening; neither does the child. Instead of empathy, there is fighting over the behavior. Lots of fighting. And may God help the parents if the child is over 18... then good luck, because it's a whole other ballgame with HIPPA.

Delusions and hallucinations are scary. Dad is following the child up the staircase, but the child REALLY thinks daddy "chasing me" is going to "hurt me". So the child bolts for the door to escape, in 20 degree weather with no coat... and runs away. Try convincing that child to go to the doctor when YOU have become the enemy in her mind! It is devastating.

HIPPA laws need to change to accommodate serious mental health issues, so parents can actually HELP THEIR CHILD! Parents are the ones who have seen the symptoms; have lived with it. Only they can give an accurate picture to the physicians about what has happened, yet they are locked out due to privacy laws. The child with schizophrenia, if given the choice, will NOT get help on their own, especially if they are fighting with their parents. So round and round and round and round it goes, tearing families apart.

How can we get the laws changed?

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