Building a Movement for Better Early Psychosis Care

By Dawn Brown | Nov. 18, 2016

 

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.

Comments
Eileen Owens
My brother age 74 has been psychotic, bipolar with depression for almost 20 years. There has never been a team effort to help him. He is single living with my elderly father. He is addicted to sending money to scammers thinking he will win the big pot of money anytime. He will do anything for money. Yet the psychiatrist who will not listen to family states he's fine. In Illinois help for the mentally ill is almost non-existent. I feel so helpless.
12/8/2016 10:48:43 PM

Lynne Hamilton
Thank you Susan!! This looks like a really great tool - I'm going to share it with others, and the therapist in our MH wrap around program!!

http://www.earlypsychosis.ca/pages/resources/downloads#sthash.vgzD7Yxc.dpuf
12/5/2016 2:50:19 PM

Barbara
When my son started having paranoid delusions it was hard to get him hospitalized. He was sent home the next day despite his symptoms which only caused him to get worse and as it worsened he was not on the medication he should have gotten when I first tried to have him committed. It was two more years later and by this time he was hearing voices and having panic states. He would up having to get ECT and than put on Clozaril. I think there would have been a better outcome had he gotten the treatment that he needed the first time.
12/2/2016 10:18:42 AM

Karrie
Thank goodness for supporting people who won't let so many fall through the cracks
So thankful for NAMI
12/1/2016 11:06:56 PM

Karrie
My son also had early psychotic episode at 18 years of age.
And verified clinical psychologist stated" it's just because he smoked too much of this new marijuana"
I wanted to report this statement to anyone but I was so overwhelmed with trying to help my son!!
I let it go.
My son suffers from schizophrenia and multiple personality disorder
And he is the strongest survivor I have ever encountered.
I work as a state Corrections counselor and officer for over 20 years
And still I am amazed at the mental health system in our country that is so slow with help to those in need!!
Good things are coming but not fast enough.
12/1/2016 11:05:10 PM

Oley
I remain hopeful for a cure for young people, and I remain hopeful for a recovery for our adult daughter. While she experienced bi-polar early on, ~12 years old, schizophrenia started past eighteen. I'm convinced drugs were key in her illness and I regret we were incapable keeping her away from them. She had some good friends, but there were other friends that were into hard drugs deep. For a couple years now she gets a monthly injection and that has completely ridden the schizophrenia, but she claims the side effects make her want to lay horizontal all the time. Plays with and talks on the cell phone when she's awake, not much more. Right now feel strongly that if she were stop taking the shot, she'd suffer pschosyy and end up right back in the hospital. She has a case manager but we're not confident that she does any good, mostly interested in getting a signature in order to get her pay. Unable to come up with anything new.
12/1/2016 8:12:26 PM

Darla Eaves
You paint such a rosy picture. Where do you live, that treatment has changed so dramatically? We haven't even begun to get these things in WA., or most of the US for that matter. There is still a long hard road to get to even 'adequate' care. I know your son went through a long traumatic process to get stable, but your family is very lucky indeed. You were able to get long term treatment, long enough to find the right medication! Most SMI do not get that! You also forget to mention that without the treatment your son got, MANY become adiicted to street drugs. This is such an epidemis side effect of lack of treatment, I'm actually shocked that you don't mention it. I'm so tired of NAMI whitewashing the horrors of SMI. The fight has barely begun. I'm glad you still have your son, many of us DO NOT.
12/1/2016 5:48:41 PM

Chantel
My brother lives with schizophrenia and was not a beneficiary of early intervention. I founded Partners for StrongMinds to connect young people experiencing psychosis to earlier treatment and support. You'll find resources and personal stories of strength at www.partners4strongminds.org and our youth resource hub, www.stronmindsproject.org. Thanks to NAMI for advocating for increased access to these services!
12/1/2016 2:57:00 PM

Daniel
I've gone through somewhere between 6-9 severe episodes of psychosis, many of which lasting for several months at a time. Hallucinations, delusions, nightmares and night terrors, severe depression and panic level anxiety left me feeling like I would never get out of the terror and confusion that came with these repeated episodes. I had a similar introduction to the world of mental health care which colored my view of it and shaped my interactions for many years. When we don't even attempt to educate the person who is suffering and deny them involvement in their treatment that can be a powerful motivator for us to rail against this method of "help." After years of repeated hospitalizations I ended up in a long term treatment center which gave me a education on mental illness and had great therapists who help me work through a lot of what I was suffering with. That was nearly six years ago, and up until 2015 I didn't have any episodes requiring hospitalization. After this most recent dip into psychosis I came out and became the director of my treatment. I found a psychiatrist who looks at these kind of things with a more holistic eye, and a therapist who helps put things in perspective. I am now a dedicated practitioner of meditation and believe strongly that these people that I sought out, and practices that I've taken on of my own volition are key factors in my recovery. I've been working and pursuing a college education with great success. We must make patients and families aware that a diagnosis of skitzophrenia or other illness that can cause psychosis are not impossible to recover from. If we don't even try to educate those who suffer and remove their input from the process completely and dismissively we shouldn't expect great outcomes.
12/1/2016 1:04:53 PM

David Callahan
Mental Illness joined our family 5 yrs ago. Our son became schizophrenic during senior year at university.
A year later he returned and finished and graduated.
It has not been easy.
As a family we all became NAMI members.
Take the Family to Family class!!! Life saving and life changing.
12/1/2016 9:17:46 AM

Jennifer
Dec 18th will be here soon. That date marks the day 1 year ago that my fiance was arrested and taken to our county jail after a psychotic episode. He was there for several months before being sent to a state prison, where he was finally seen by psychiatrists to determine his mental condition and competency. The judge presiding over his case was honest in that the county jail was not the place for him, and with our state lacking in mental treatment facilities, the judge felt the only other option was to transport him to the states department of corrections where he would at least be seen by those more qualified to assess his situation. He was found incompetent to stand trial and is being committed to one of the only remaining state hospitals we have.
Previous to this I had no idea how lacking our state is when it comes to mental health treatment. It has been an extremely frustrating and heart breaking experience. It was approxmostly 3 months from the time he started experiencing symptoms to the time this happened. We spent those 3 months practically begging for help-to basically be told there just weren't enough Drs available for the number of those needing seen. Twice situations got serious enough that he was taken to the emergency room, and admitted temporarily for treatment, although neither time kept long enough to really determine exactly what was happening or long enough to establish treatment.
Learning of and becoming familiar with NAMI, I hold out hope for the changes that are desperately needed in mental health treatment.
12/1/2016 12:23:19 AM

Karen
Christina - I had a similar situation with my son about 12 years ago. Please know there is hope. With treatment, my son is living independently, in school, employed and doing well.
11/30/2016 11:57:51 PM

Robert Curran
there must be care for life,because there is no known cause or cure for schizophrenia. families play an important part. my parents were alcoholics who left everything up to the doctors. today i am a practicing holistic physician. i write for the new england journal of medicine. i never have given drugs to any of my patients! today there are stories about goals. the medicine gets in the way of accomplishing these goals, often leaving only the state hospital system to care for them.
11/30/2016 11:38:00 PM

Silvia Gonzalez
My son is an Army Veteran 25 years old he served in Afghanistan came home after serving 18months 5years ago he was diagnosed with Paranoid Schizophrenia PTSD TBI & it's so hard caring for him his meds are not working as they were before I'm so lost suffering with severe depression myself this is the hardest thing to go through in life.
11/30/2016 10:26:37 PM

Kathleen Cord
To Dawn and Christina, thank you for your insight and inspiration. I too have decided to wrap my life around my son (31) who suffers severe mental illness/psychosis/pchizophrenia. I am flying out to CA to pick him up and bring him back home with me. For 4 years he has been in and out of jail, transition homes and homeless. This is the hardest thing I've ever been through. It breaks my heart. I know I will take care of him now for the rest of his life. I constantly keep in prayer and have the faith and hope that I can bring him to a better life through a mother's love and care. I accept the challenge. I will continue to look for inspiration ideas and hope through your blogs. GODspeed.
11/30/2016 9:19:35 PM

Anne
I don't know when this CSC program was implemented, but as of the date of my (schizophrenic) son's death by suicide in 2008, there were no signs of any such effort. And we were not living in some rural area... his "care and treatment" took place in the (Houston) Texas Medical Center - the largest medical center in the world with two medical schools; and, I was "connected" to VIP faculty in the medical school and Center. It is still my opinion that my son's death was a result of the abject failure of the mental health system across all levels.
Hopefully, this CSC program will keep another mother/family from burying their child. He was 28 and his daughter was 3 1/2 at the time of his death.
11/30/2016 8:31:58 PM

Mary Korchowsky
I heard a priest who was a psychologist, at church talk about the foundation of Missionary Society Of Infant Jesus in India where there is help and treatment for mental illness. I hope this helps abhisek. I do not have any other information about the society but they were asking for donations. Perhaps you could look them up.
11/30/2016 8:25:06 PM

Rasheida
I have suffered from Psychosis a few times in my life and it really did alter my entire journey. I did finish college and still raise my 2 kids but I have not been able to successfully work or move past the traumas of dealing with psychosis and hospitalizations. However I do believe there is hope.
11/30/2016 8:15:45 PM

lisa moser
My son has suffered with schizophrenia for almost 10 of his 21 years. He has been denied access to a RAISE program because he has been on antipsychotics for more than 18 months. My youngest of 7 children is now 11 and has been on antipsychotics for a year with many similar symptoms.
Early intervention is great, but often psychosis is insidious and places people outside of the time frame required of early intervention.

These suffering individuals need even more help to overcome psychosis.
11/30/2016 8:06:35 PM

Linda Gribcheck
This is my first attempt to reach out for support. My son has been in and out of hospital since April 2016, 7 admissions. He has schizoaffective bipolar. His first psychosis episode was his senior year in college, 2001. He did finish and received his degree in 2003. He has worked, climbing the corporate ladder until last year when a change of medication caused him to be hospitalized twice. He went back to work, but struggled. His wife has left the marriage, so I am his caregiver. I am hoping to blog with other mothers/fathers or caregivers for support.
11/25/2016 4:48:34 PM

Susan Inman
Many thanks to Dawn Brown for her brave and very informative blog.

US families owe so much to the sustained research supported by the National Institute of Mental Health (NIMH) that has led to the establishment of RAISE programs.

Other countries, including Australia, the UK and Canada (where I live) have been successfully using a well-researched, comprehensive early psychosis intervention model for many years. This freely available British Columbia Psychosis Toolkit could be useful to people with illnesses, their families, clinicians, educators and the public:
http://www.earlypsychosis.ca/pages/resources/downloads
11/19/2016 11:43:40 AM

abhisek bhattacharya
is CSC available in india . i am apatient of paranoid schizophrenia for last 14 years. my age is 37 and i am not employed and has halluccination mood disorder and depressions throught the cycle
11/19/2016 1:55:17 AM

Diana Lozano
My grandson is past that and it's too late after having 9 hospitalization. But there is hope for new patients.
11/18/2016 8:25:23 PM

Christina
My son was diagnosed this summer with schizophrenia. We had early intervention. We had a year of in and out of psychosis with all the doctors telling us it must be drug use... even tho he had clean drug panels... this is by far the hardest thing I have ever gone through. Yet the new doctors call us an anomaly. We chose to wrap our lives around my son Ian and do whatever needed to support him. He immediately went back to school and finished his two missing credits and keeps moving forward with therapy. Even though he is completely different, my sons love is there!
11/18/2016 5:28:00 PM

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