Time is Ticking on Early Psychosis

OCT. 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.  


MAY, 08, 2018 03:50:09 PM
sister of schizophrenic
I have a sister with this mental illness and possibly my 11 year old son was showing signs of it very early on. My mother most likely had it, but we were all adopted out and never knew for sure. I don't know what to do. I feel so lost and so in pain for them. I don't know where to turn or what I can offer. My sister is in complete denial, my mother never openly admitted it and I worry for my son's future and pray to God I am wrong and he is just imaginative.

APR, 19, 2018 03:23:29 PM
My family have been trying to get my brother help since Jan.14 2018 and no one can help.
It is aweful he has 2boys, and a house and is going to loose them.
He refuses to go to Hospital for help doesn't realize how bad he is with Psycosis.My Mom filled Joel's law but we haven't heard back.Dont know what to do?

JAN, 12, 2017 10:51:12 PM
Suzanne Pelkaus
I just read this though it is too late for my son, who have a psychotic episode when he was 16. he is now 49 Never continued with treatment or medication. He refuses to talk about going into treatment because he is schizophrenic and does not realize he is ill. My main issue as how stupid it is for mental health providers not to include the family. Something has to be done about HIPPA

NOV, 13, 2016 10:46:48 PM
Fara Pherigo
I am interested in learning more and how to help my younger brother who began having psychosis at the age of 17. He has been in and out of hospitals and never diagnosed with anything specific, bipolar or schizophrenia, he is now incarcerated and I fear his life will never be full. I would like to learn more of how I can help we he comes home.

NOV, 09, 2016 06:13:49 PM
Eleanor Shaw
I am a retired pastor and former Social Worker. I am interested in being a Faith-based Advocate for Nami.
Thank you!

NOV, 08, 2016 03:27:21 PM
Reading these posts still trigger my eyes to fill with tears. My son experienced a severe psychotic break while a freshman in college. He spent over 100 days in three hospitals. Our lives are different now -- we have a new normal -- but he is doing well. He has a part-time job and is a Phi Theta Kappa scholar in college. I couldn't find a program like this for my son -- but created my own. I encourage you to take the Family-to-Family class and connect your son/daughter with the Peer-to-Peer group. We talk openly about my son's illness -- we have nothing to be embarrassed of. Know that you are not alone and there is hope but we've got to stand up for health parity.

NOV, 02, 2016 10:00:21 PM
Jenny flores
I'm am new to this life. My son is 20 his first episode was 2015 he was hospitalized may 2015 Jan 2016 and just this past Saturday again. I keep asking myself why why my son. Why has he been cheated out of a normal life. I'm so afraid that he will come out the hospital stop his meds and he will have the same cycle. I don't want to lose my son. How can I make him stay with his meds. He is in denial and feels like he doesn't need them that there is nothing wrong with him. I read and read articles and still I feel like there's not enough study. How can I help my son comply with his treatment. I can't force him he's 20 I feel like the last two times he was over medicated he stopped taking the meds because the side effects he was feeling really affected him. The dr. Kept him on the same meds even after he told her what he was feeling and that's why he stopped. All he did was sleep and wake up to eat he had no social life. I'm so scared that one day I'm going to lose him because there's not enough research on schizophrenia.

NOV, 02, 2016 12:38:29 AM
Bill George
I wish I had received help at the time of my first psychosis. That was when I was 20. It was only a year later, when I had my second psychosis, that I was offered treatment. Moreover I should have been offered treatment even earlier -- at the time of my original trauma when I was 14. I did see a psychiatrist who diagnosed me as schizoid. But I wasn't given any treatment for two reasons: (1) It was a long time ago before the importance of early treatment was understood; (2) I was too ashamed to confide my whole story to the psychiatrist! I am now stigma free and doing well at 79 years of age. I have had excellent psychotherapy including together working through my trauma(s). Bill George (Anoiksis patient association, Netherlands)

NOV, 01, 2016 03:13:38 PM
Bill George
Often the problem with treatment avoidance or non adherence is self stigma. I am stigma free!

OCT, 30, 2016 06:51:16 PM
Today is my Brother's birthday and I had to 302 him for the 3rd time in two months as they keep discharging him from crisis centers after a week stating he is fine and follow-up outpatient. His whole life he made it main stream with diagnosis of ADHD, product of a divorce family, then diagnoses with Asperger's at the age of 30 by Penn Behavioral health...Then, they change their minds and call it PTSD with severe Anxiety. Continuous counseling and treatment of anxiety and depression. unable to ever live on his own, tossed back and forth by my mom and dad because they don't understand his mental-illness, ended up in an apartment paid by my husband and I due to the financial struggles and recently this past month, a first time episode of sever psychosis with paranoia and I feel like he lost his mind. I continuously review this with the social workers and asked for TCM or inpatient facility to help him regain his ADL's but have got no where. Again, he is discharged with the same disturbing thoughts that started a month ago and found him staring at the wall in the dark in his apartment, not taking his medication or care of himself. I have never felt so helpless or not sure where to turn and every time I call a phone number, they refer me to another number, or place and wish me luck!? I am loosing hope with the mental health system. I am starting to think all these numbers and websites are just for show case, because in the end, no one actually offers the help or an answer.

OCT, 28, 2016 03:44:09 AM
I wish it happened for my daughter. She was 22, when her psychosis was all bit ignored by her treatment team. And she died. They didn't help her stay in school, or work, or even make her take her meds. She was in a court ordered treatment facility for two years, when she died. They administered her meds. She stopped taking them, and I was never told, due to HIPPA laws. My daughter had been hospitalized 13 times in less than 3 years. All they had to do, was send her to the hospital. They just didn't care...and I am forever broken. Please help other families to not have to go thru what I've been thru...

OCT, 27, 2016 12:29:45 PM
Donna Hughes
Thank you!! I want to help to advocate help for schizophrenia😊

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