Schizophrenia Survey Recommendations: Improving Attitudes, Meeting Needs
1. Promote Public Awareness and Knowledge
Expanding access to treatment for people living with schizophrenia and helping them to achieve higher levels of recovery cannot happen without public support. That involves addressing public attitudes. Public education, heightening public awareness, and correcting public misperceptions will go a long way to eliminating the barriers that exist for so many.
That's easier said than done, but a framework for progress has slowly emerged over the past ten years to provide hope for the future. Strategies need to be expanded and intensified.
Showing the face of schizophrenia--through personal contact and stories of recovery--is one powerful agent for change. NAMI's In Our Own Voice program, in which individuals living with mental illness engage in public outreach and education, is one model that should be supported and expanded.
From a cultural perspective, partnerships, alliances, collaborations, and commitments that extend beyond the mental health community are essential. Accurate, balanced, compassionate reporting or portrayals in news and entertainment media are especially needed.
2. Close the Gap Between Onset of Symptoms and Treatment
Greater recognition of symptoms is needed--by individuals, families, primary physicians, teachers, and others, and particularly by professionals who interact with teenagers and young adults. Recognition can be promoted through greater education and training integrated into courses and programs.
It also can be supported through screening and evaluation programs such as the "Teen Screen" program in high schools. Although Teen Screen focuses on depression, symptoms of stress and depression often precede or mingle with those of psychosis. Schizophrenia alertness needs to be included in individual evaluations that typically follow screenings.
Education and screening programs also need to be expanded in college and university settings, where the age of the population coincides with the average age of onset for schizophrenia. These programs need to be integrated with other healthcare services. Too often, alertness is lost in a fragmented system. The same holds true for teenagers and young adults who do not continue their studies after high school, but directly enter the work force or military service--and still require outreach.
No matter what the path, greater focus is needed on early intervention and prevention. Risk factors can be identified, managed, or treated before onset occurs. Early diagnosis and referral programs, such as those being promoted by the Robert Wood Johnson Foundation, should be supported and integrated into overall healthcare.
3. Provide Welcoming Access to Primary Healthcare
Primary care physicians and other front-line health professionals need to understand the nature of mental illness and be trained to respond helpfully in addressing physical complaints and conditions. The need extends beyond the mental health community; it is an interdisciplinary, cultural challenge that must begin in medical and nursing schools--and must continue in practice settings, continuing education, and in-service trainings. Meeting the challenge especially requires the commitment of professional and institutional leaders.
4. Increase Access to Treatment and Services
Full access to medications and other treatment must be preserved. In an effort to control costs, state Medicaid and privately managed care regimes routinely restrict access to care through restrictive formularies and "fail first policies." Such restrictions ignore the fact that "one size does not fit all" and can lead to tragic consequences.
Access to care must also include an end to unfair discrimination through mental health "parity" that extends to not just private, employer-paid health plans but also to Medicare.
An array of services is needed to ensure adequate treatment and promote recovery for people living with schizophrenia. In 2006, NAMI published Grading the States: A Report on America's Health Care System for Serious Mental Illness, which detailed "checklists for change." The report noted that every state mental healthcare system requires carefully balanced levels of care. Cost-effective, proven treatment practices must be available.
Housing is an especially critical support for stability, recovery, and independence--and maintaining community connections. Along with employment, it needs to be seen as an integral part of the mental healthcare system.
5. Provide Education and Support for Caregivers and Individuals Living with Schizophrenia
Education and support are important to both individuals living with schizophrenia and their caregivers. Public-private partnerships at the national, state, and local levels are well suited to meeting this need, but they must be person-centered, community-based, and supported by providers. NAMI offers models through its own education programs, including the following:
- Peer-to-Peer: a free course on relapse prevention and wellness for persons living with any mental illness diagnosis
- NAMI Connection: free recovery support groups that meet 90 minutes a week and are run by individuals living with mental illness for other persons who live with any diagnosis
- Family-to-Family: a free course for family caregivers of individuals with severe mental illnesses that discusses clinical treatments and teaches knowledge and skills that family members need to cope more effectively
6. Invest in Research
More effective medications and treatments are needed. In recent years, NIMH has funded CATIE, the largest comparative study of "old" and "new" generation antipsychotic medications. New generation medications have made dramatic differences in levels of recovery, but, overall, CATIE has found that the old generation remains generally as effective as the new. One size does not fit all; choices among medications are highly individualized and often involve managing side effects. The greatest implication of the study is the need for scientific and medical research that goes well beyond incremental improvements to the development of a more highly effective "third generation" class of medications.
As a society, we must make a commitment to individual dignity, support, and recovery. It will require changes in attitude and investment. Vision and will are needed from leaders in professions, business, industry, government, and media at all levels of society.
NAMI hopes this report will help inspire that commitment. Schizophrenia does not discriminate. It can strike any one of us or our loved ones. At any time, we or our loved ones may become one of the 2 million.