Early Intervention in Psychosis: A Strategic Roadmap for Massachusetts
November 5, 2020, 9am-4:30pm EST
Client & Family Perspectives
In developing this strategic plan, we reached out to clients, families, and others receiving psychosis services in the state of Massachusetts to learn about their experiences and priorities. Read below for a snapshot of anonymous preliminary data from this survey. This is by no means an exhaustive account of the rich feedback provided on our strategic plan, but rather a starting line to think about service needs and development from the perspectives of those who use them.
If you have used or sought psychosis treatment services in Massachusetts and would like to share your thoughts, you can complete this survey here.
Involving Consumers in Service development
Parent: “We are living it. We are the best judges of what may or may not work.”
Client: “I think it's crucial that service users and potential service users have a say in guiding new services, and not just in a lip-servicey way. I hope you are serious about this. I would add that I think families should be involved, because obviously psychosis in their family member affects them, but I think their input should be deemphasized compared to that of the people directly affected.”
Parent: “Parent/family experience is crucial information in setting up interventions and support for psychosis. We are the boots on the ground.”
Client: “The individuals and families are the ones on the front lines of these struggles and their input is extremely valuable. More work needs to be done to listen to the reality of the affected youth.”
What made it hard to access specialized treatment?
Community Education about Psychosis
Parent: “As a parent, I was very poorly educated on psychosis and had no idea what my loved one was going through during his first episodes. There is a plethora of information out there, but people are generally unaware of what psychosis is.”
Client: “I have had to 'talk down' doctors from calling police on me just for disclosing that I hear voices.”
Parent: “My employer was very unsympathetic towards the family problems we had due to my sons illness. Better education and required support from employers would have helped me and my family significantly.”
Client: “Informing the world about these types of disorders is extremely important and can remove stigma, allowing those who are suffering in silence to open up.”
Researching New Treatments
Client: “Individualized treatments based in good science are really all I want.”
Parent: “The current meds just suck. Let's be honest. Even though they keep you lucid, they really reduce quality of life because of their side effects.”
Client: “I know there's not much money in neuroleptics anymore so it's hard to expect new drugs with less brutal/disabling side effects, but they certainly would improve treatment for a lot of people.”
Parent: “Meet people where they are on their journey. Every person has individual needs but using data, peers, proven treatments and researching new ones will help.”
What are the top concerns in your/your child’s life right now?
Financial Support
Parent: “My son’s serious mental illness has set me back financially quite a bit. I could not keep my job when he began showing symptoms due to his needs and the stress. His success with medicine now makes him stable but it has taken three years to get here. We could use more help financially.”
Client: “More resources to assist with housing, utilities, food, & other bills [would be useful to me right now].”
Police Reform
Parent: “Police, especially, should get Crisis Intervention Training AND SHOULD PRACTICE THE DE-ESCALATION THEY LEARNED THERE. Most people in prison have a mental health/substance abuse condition and are far more likely to improve their condition through some form of treatment rather than incarceration.”
Client: “I think police involvement in psych services (and wellness checks) should be limited as much as possible and am not convinced that trainings do much at all to check police violence.”
Parent: “Police need training. A person with psychosis can easily be arrested for their actions. [My town] has a program in which a trained mental health provider rides with an officer. This has helped my family.”
Client: “People die because police officers can't recognize symptoms.”
Which members of your community would benefit from psychosis-specific training?
Care Continuity Over Time
Client: “I think it's important that people not be/feel abandoned by services upon reaching a certain age/certain amount of time past their first episode.”
Parent: “I can clearly see that the impacted individuals will need continued services beyond the initial stages. The services should be different but they will still be needed to keep the treated on track.”
Parent: “Not let them fall through the cracks. I would love to see some form [of treatment] continue for folks aging out of programs.”
Special thanks to Alisa Lincoln, Raimy Jaramillo, & Atsushi Matsumoto at Northeastern University’s Institute of Health, Equity, and Social Justice Research and Kelsey Johnson, Michelle Friedman-Yakoobian, & Margaret Guyer at the Massachusetts Psychosis Network for Early Treatment (MAPNET) for their work in developing, disseminating, and displaying responses for this survey.