NASHUA — Shawn Speidel was 19 years old when he started hearing voices.
He knew from the very beginning that “it wasn’t right,” he recalls.
“It’s like having another person inside your head that’s telling you things, some nice, some not so nice,” he said. “And sometimes it feels like you’re not in the driver’s seat of your own life.”
But Speidel kept it hidden even from those closest to him.
“I was afraid to be seen as someone who was dangerous,” he said.
He finally opened up to his sister, who urged him to get help. He was diagnosed with schizoaffective disorder.
“It took me a while to really accept the diagnosis,” Speidel said. “The realization that it’s not who I am, it’s just one of my little quirks. And something I’m going to have to learn to admire about myself.”
Speidel, who just turned 23, was lucky. After several breakdowns and hospitalizations, he ended up at the Greater Nashua Mental Health Center for help. The center has been at the forefront of responding to what mental health experts call First Episode Psychosis.
The idea is that providing early intervention and wraparound services after an early episode of serious mental illness can make a huge difference in how someone learns to adjust and thrive.
Cynthia Whitaker is chief of services at Greater Nashua Mental Health Center, which was a clinical site for an early research study known as RAISE (Recovery after an Initial Schizophrenia Episode).
When federal funding became available for the state to create a specialized FEP team, she said, “We jumped at the chance.”
Whitaker said individuals — and even doctors — may not recognize an early episode of psychosis for what it is. One key to the FEP approach is involving the family in a client’s education and treatment plans. “We know their prognosis in the long term will be better if the family is involved,” she said.
FEP programs also stress supported employment and education, Whitaker said. “Because one of the other things we know is work is a big part of recovery,” she said.
And Whitaker said the Nashua team has seen what a difference this comprehensive kind of approach can make. “We have definitely seen less hospitalization, more family involvement and more understanding of illness,” she said.
The program is geared toward teens and young adults, an age group that’s often difficult to engage in health care, Whitaker said.
“So having a program and staff that are specially trained with engagement techniques and motivation techniques specific to the young adult population, that alone is successful,” she said.
Ken Norton, executive director of NAMI New Hampshire (National Alliance on Mental Illness), said there’s ample evidence that FEP programs “can dramatically improve long-term outcomes, not just short-term outcomes, and reduce costs and human suffering.”
Some experts are getting away from the FEP language, since most individuals do not actually report their first psychotic break, or even their second or third, Norton said. Some clinicians now prefer the term “early onset serious mental illness,” he said.
Norton said the key is to focus on “those illnesses that have the worst outcomes and are the most costly.”
Speidel said the clinicians at the Nashua FEP program helped him understand his condition. “It gave me a lot of insight on what this disorder really was,” he said.
Asking for help is critical, Speidel said. While there’s no cure for his illness, there is hope, he said. “There is a way out,” he said. “There is a road that leads to good things.”
“I feel like without FEP, I wouldn’t be where I am now. I would be in a much darker place, and I would be without that sense of hope,” he said.
Julianne Carbin is director of the Bureau of Mental Health Services at the state Department of Health and Human Services. The Nashua FEP team has a proven track record of success, she said.
Now the state is trying to figure out how to expand that program statewide.
“We’re looking for ideas,” Carbin said. “And if First Episode Psychosis programs aren’t possible, there are other models that we need to explore. But this really is the gold standard in terms of serving this particular population.”
The $1.8 million federal block grant the state receives for mental health services requires DHHS to set aside 10 percent of that funding for early interventions, Carbin said. “The research has shown when we catch kids and young adults early, their health outcomes are much better when they’re able to be engaged in intensive, wraparound, team-based treatment early on,” she said.
FEP intervention was included in the state’s new 10-year behavioral health plan, which sets out goals and recommendations for serving children and adults. But there are challenges in replicating what works in Nashua on a statewide basis.
Here’s one difficulty: The individuals that FEP programs target represent a very small number within the population of those who need mental health services in the state. So creating specialized teams in every area of the state may not be the best approach, Carbin said.
The state health department recently issued a Request for Proposals for an organization to create a public awareness campaign for FEP and to recommend the best approach to establish a statewide program. The department estimates that between 200 and 400 people in New Hampshire develop a first episode of psychosis each year.
Whitaker said New Hampshire has been behind other states in adopting the FEP model. But she said she was “thrilled’ to see it included in the 10-year behavioral health plan. “I am optimistic,” she said. “We’ve certainly seen some good results.”
FEP programs are designed to be short-term, Carbin said. Young people participate for about two years of intensive services, and then are able to transition to a lower level of care, she said. “So ideally, it helps us to fill out our continuum of care to make sure youth and young adults are getting the support they need when they need it,” she said.
The funding is another challenge. Carbin said starting FEP programs in other regions would require additional funding, both for Medicaid and general funds, in the budget cycle that’s just beginning.
Speidel said he still struggles sometimes, but he’s doing well. He’s on medication that stabilizes him, he said, “to the point where I’m able to wake up, get out of bed and actually rule the day.”
He’s writing music again and hopes to start a new job at a warehouse. He’s going to the gym more often, and plans to get back into hiking. “One of my dreams is to hike the Appalachian Trail,” he said.
Early intervention for those with a serious mental health condition “could be a matter of life or death,” Speidel said. “Because this is a very scary thing, to hear someone else’s voice that’s not yours inside your head.”
What does he wish someone had told him four years ago when he had his first episode of psychosis? “I wish someone would have told me that I still have a chance,” he said. “I still have a chance to get better. I still have a chance to go out and socialize and be like everyone else.
“I still have a chance to make myself happy.”