Why does early treatment matter for psychotic episodes?

By Taylor Knopf

In 2014, Angela Diaz was 24 years old and believed she was receiving secret messages from the world around her. She describes being paranoid that her coworkers were watching her and could hear her thoughts. She believed one was sending her secret messages through small things he would do, such as changing the photo on his computer screensaver. 

She knew something was wrong, but she kept showing up at work and didn’t immediately tell her family or therapist. It all came to a head one day when she thought different cars were following her and that the colors of them meant something. Diaz showed up at her therapist’s office in distress and said felt like her head was splitting in half and aliens were trying to abduct her brain. She was told to admit herself to a psychiatric facility. 

During this time, her first hospitalization, Diaz was misdiagnosed with bipolar disorder, in part, because she didn’t tell the doctors about the voices that had been tormenting her. She said the voices kept her from being forthcoming about her symptoms. 

“I don’t think there was a moment where my head was just calm,” she said. “There was always a voice. And every little thing I did, the voice had a comment about it. So it was so crippling and unbearable.” 

She remembers a day where a voice told her repeatedly that she was going to die. Diaz finally confided in her mother about the voices. She was admitted to a psychiatric facility for the second time. There, the staff connected her to Encompass, a first episode psychosis program in Wake County designed for people like her: young adults and teens experiencing early symptoms of psychosis. 

“The first thing I remember about coming to Encompass is that somebody explained to me what was happening to me,” she said. “Up until that point, the scariest part was not just the symptoms. It was that I had no words for them. My own mind had become a place I did not recognize.”

At Encompass, Diaz was diagnosed with schizophrenia, and, after some trial and error, her doctors eventually got her on medication. That helped quiet some of the voices, which meant some periods of clarity and relief. She returned to normal activities, like going to work and hanging out with friends. Unlike her experience in psychiatric hospitals, Diaz said, she felt like she had a team of people on her side — the psychiatrist, therapist and other peers in the program. 

“There were people checking on the entirety of my life, not just my symptoms,” she said. 

That’s the core idea behind first episode psychosis programs: catching someone experiencing psychosis early and wrapping intensive services around their life to give them the best opportunity at recovery. These programs can prevent people from cycling through hospitals and possibly jail cells in the future.

The initial first episode psychosis program in the southeastern part of the U.S. opened at UNC Chapel Hill in 2005, where it was groundbreaking. Now, there’s a host of data to back this early intervention model, and North Carolina is trying to expand it. But clinics in the Triangle area and western North Carolina say the need is outpacing their ability to respond. 

The biggest problem? Funding.

What is a psychotic episode?

Experts define a psychotic episode as someone losing contact with the shared reality of those around them. That can look different for each person: Their baseline behavior may suddenly change drastically. They may be more fearful or become profoundly paranoid. They may speak and act in disorganized ways that make little sense to those around them. 

“Traditional symptoms that we’re looking at are things like hallucinations and odd or strange beliefs that they didn’t hold before,” explained Whitney Rosenblatt, clinical team lead at AEGIS (Appalachian Early Guidance Intervention and Support) First-Episode Psychosis Clinic, which serves western North Carolina. 

Too often, people incorrectly assume that people experiencing psychosis are violent. Rosenblatt said people experiencing psychosis are much more likely to be victims of violence than perpetrators.

“Certainly, people can be scared and lash out, but most of the time they’re not doing it because they want to be violent or hurt anybody. It’s because they’re scared and terrified, and they don’t know what’s happening,” she said.

Rosenblatt’s team often receives referrals from hospital emergency rooms, mental health crisis facilities and mobile crisis units. First, they assess the person to determine if they’re experiencing psychosis or something else. She said the goal is to get people into the right treatment as quickly as possible.

“A good example is PTSD,” she said. “Some of our clients are coming in with really severe PTSD symptoms that, on the surface, may look like psychosis. But they’re not. They’re flashbacks, or they’re reasonably triggering events that cause them to become symptomatic. 

“If their primary issue is PTSD, we want them to go to trauma treatment.”

Early intervention is key

First episode psychosis programs are designed to treat people early in their illness to give them the best opportunity for recovery. Research shows that most of the clinical and psychosocial deterioration occurs within two to five years after psychosis starts. Intensive treatment early on can reduce hospitalizations and improve a person’s long-term functioning. Once people have multiple episodes of psychosis, however, getting their brains back to more normal functioning becomes more challenging. 

These programs mostly serve people ages 15 to 30 years old, since that’s when someone is most likely to experience their first psychotic episode.

“At this age, I think it’s really important because the brain can still recover. It’s more pliable,” said Deborah Redman-Szajnberg, clinical director of UNC Wake Encompass, a first episode psychosis program based in Raleigh. 

“There’s a lot of opportunity for recovery, and a lot of clients can come back to sort of what may have been baseline before,” she said. “And some don’t, but I would say a majority of our patients go on to live a really great life.”

Before entering Encompass, nearly 80 percent of participants had used emergency services or been hospitalized, according to Redman-Szajnberg. Once in the program, between 5 percent and 20 percent of participants ended up back in the hospital the following year, a number she said is well below the expected 30 percent to 50 percent hospitalization rate expected for someone after they experience their first psychotic episode.

“We save the system a lot of money, not only [in hospitalizations], but also in their trajectory of recovery,” Redman-Szajnberg said. 

Reducing the symptoms of psychosis also prevents costly cognitive impacts or long-term disabilities down the road, she explained. 

Need is great, funding is limited

First episode psychosis programs have expanded in North Carolina, but funding hasn’t kept pace with demand. These programs are funded through federal and state mental health block grants, which is why many can serve participants regardless of their insurance status. 

But Rosenblatt said the overall funding from the state is shrinking. Her clinic saw about a 20 percent reduction last fiscal year, and another 25 percent cut this year. As a result, clinics have had to lean more heavily on insurance, which can be a problem for young people who can be uninsured. Rosenblatt said it is manageable for clients without copays, but it’s costly for those with private insurance or no coverage at all.

Asheville-based AEGIS started seeing patients in 2023 and has partnered with a peer support group on an awareness campaign called RISE to educate surrounding communities in western North Carolina. Since then, the clinic has received more than 175 referrals and served about 80 clients.

The North Carolina Department of Health and Human Services said the state must allocate at least 10 percent of its federal mental health block grant funding to first episode psychosis programs, and that North Carolina continues to invest above that minimum requirement. However, several other federal funding sources — including COVID-era supplemental funds, COVID recovery dollars appropriated under the 2021 American Rescue Plan Act, and money from the 2022 federal Bipartisan Safer Communities Act — have ended or are winding down in 2027, shrinking the overall pool of money available.

“While these federal phase‑outs have reduced total available funding, NCDHHS continues to value specialized [first episode psychosis] providers as essential partners in improving outcomes statewide,” a department spokesperson told NC Health News. 

The department also pointed out that first episode psychosis programs received $3 million in the first year of the North Carolina Rural Health Transformation Program to expand access by adapting the treatment model to reach rural communities.

At UNC Wake Encompass, which started in 2015 and is a more established program, Redman-Szajnberg said her program lost roughly half of its usual funding, though it also received new money tied to the Rural Health Transformation Program to expand services. That dynamic comes with its own strain. 

“It’s a real interesting dilemma because you can’t serve less of who is on your caseload now, even though the funds were cut,” she said, noting that the program will likely need to hire more staff to meet the new rural mandate without shrinking its existing caseload.

Redman-Szajnberg said Encompass is already serving nearly twice as many people as its funding is designed to support. 

“The need is really great,” she said. “We can’t serve all the referrals that we get at this point.”

What’s different about first episode psychosis treatment?

First episode psychosis programs emphasize education for the participants and for their loved ones so they can start to make sense of what is happening. But sometimes when people first arrive at the clinic, they’re unable to learn or absorb information.

“If the education piece isn’t going to be helpful in the beginning, we’re just there to help them deal with the symptoms first, and we can always come back to education later,” Rosenblatt said. 

On the medication side, Rosenblatt described a cautious, deliberate approach. Clinics use a strict protocol for trying drugs, ruling options in or out and switching quickly if something isn’t working. She said people experiencing psychosis symptoms are often prescribed high doses unnecessarily, when low doses tend to be really helpful. 

As for therapy, she said these programs use individual resiliency training — an evidence-based approach that blends cognitive behavioral therapy and dialectical behavior therapy, two modes of treatment that combine education, feedback and training to help someone recognize unhelpful thoughts or patterns of behavior that are damaging. The programs also employ trauma-informed care, which acknowledges that trauma can change someone’s response to the world, and somatic work that helps people understand what their bodies are telling them about their emotions and stress.

For Diaz, understanding her mental illness, paired with a tool called a WRAP (Wellness Recovery Action Plan) plan, was one of the most useful parts of the program. WRAP is a plan people with mental illness develop when they are well that outlines the tools they need to continue on their recovery journey, the triggers and signs that they may need extra support, and who to call and where to go if they experience another crisis episode. 

She said she found healing in naming the things that help and the things that make her illness worse. 

“A crisis stopped being a thing that could only ambush me and became a thing I had already met on paper,” she said.

Angela also credited something less clinical: trips to the Farm at Penny Lane. Participants harvested vegetables, cooked what they picked and took nature walks. 

“I know that might sound like a nice extra alongside the real treatment,” she said, “but for an afternoon, my mind was off what I was experiencing. I was surrounded by encouraging people, and by people walking beside me who were experiencing the same things I was, and who treated me with respect and love while treating me like everyone else.”

Peer support opens doors

Another key piece of Diaz’s recovery started with a class she took during her time at Encompass called Brushes with Life. The art therapy program was taught by a peer support specialist, someone who also has schizophrenia. 

Diaz remembers bringing her mother to one of the group’s showcases, where participants displayed and sold their work. Diaz sold a painting that day, but what struck her mother was watching the instructor move through the room comfortably interacting with everyone.

“Knowing that he had my same diagnosis, my mom found hope in that. ‘One day we’re going to see you like that, Angela. You’re gonna be fine,’” she recalls her mother saying.

First episode psychosis programs incorporate peer support specialists — people who have experienced mental illness — throughout. Sometimes, they are the first people a new client meets before agreeing to come to the clinic, Rosenblatt said. 

“If you’ve never been there before, you don’t know what’s going to be helpful,” Rosenblatt said. “I always recommend peer support as a first layer.”

Peers will visit people in the hospital, introduce themselves and slowly build trust. If the client would like, peers can accompany them through program assessments and therapy. For someone like Diaz, that support, paired with the clinical care she received, changed the trajectory of her life. She graduated from Encompass nine years ago.

“Nobody here treated me like my life was over,” she said. “Everyone treated schizophrenia like something I was going to learn to live with and build a life around.”

The post Why does early treatment matter for psychotic episodes? appeared first on North Carolina Health News.