By Ken Duckworth, M.D., NAMI Medical Director
So many people have come to me over the years and expressed how confused and overwhelmed they were when they first experienced psychosis; how difficult it was to interpret their inner experience; how challenging it was to navigate the world to get help.
In conducting our schizophrenia survey I was troubled to find that there was an average of a nine year delay in getting the correct diagnosis existed in our survey respondents. As a field and as an advocacy group, we need to move the culture toward upstream information, assessment and services. Our public systems focus on downstream disability and many primary care doctors and private practitioners do not feel experienced enough in this area.
The single greatest response to the question who had been “most helpful” during the experience was “no one.” This is simply unacceptable.
With this new project, however, I am delighted to say that NAMI has begun to address these important and compelling needs. The results were collected in the 12-page report First Episode: Psychosis [PDF] and then used to direct and create a special website, www.nami.org/psychosis, filled with materials to address these concerns and provide medical intervention.
Nearly 50 percent of both individuals who experienced psychosis and family and loved ones pointed to the Internet as a vital source of information. NAMI is proud to offer a wealth of the most up-to-date information, readily available to anyone and everyone who may find it beneficial.
We hope to become the “one stop shop” resource for people engaging in this journey and lead people to the research and service agenda that continues to grow for this paradigm shift we are both reporting on and encouraging. Much of this work is international in nature, which highlights that a better idea cannot be kept down anywhere.
In the web resources I review recent research from Australia, China, Austria and the USA that covers psychosocial work, fish oil (omega-3), medications, cognitive enhancement therapy and creative models of care and service delivery. The topic of psychosis is being looked at from every angle and the information may help to inform you about what is right for you as you face this challenge.
We began by developing and then opening an electronic survey on www.nami.org and received input from over 1,200 people who had experienced psychosis and looked back on what they needed at the time of their first episode. We also received over 2,800 responses from family and other loved ones who shared their experience from their perspective.
Respondents to the survey tell a tale of confusion, isolation and anxiety, but also of the need to support each other and to give back. As one family member said, “It’s the most soul-wrenching experience anyone can go through. Use every resource to get through it and then turn around to help those coming up the mountain after you. They need your help.”
NAMI is a remarkable community and this is but one example of our strength and compassion. It is important to pass along the knowledge that one gains to the individuals travelling the same road. Hearing just one person, just one voice of support and compassion can help ease the struggle of the journey.NAMI welcomes your feedback on these materials. To send feedback, email firstname.lastname@example.org.