What advocacy groups support people with mental illness and their families?

The Origins and Roles of Advocacy Groups

In the mental health care industry, the term “advocacy” refers to the efforts of individuals or groups to support or argue for the improvement of mental health care. Such groups can play an important role in mental health care by raising public awareness, reducing the stigma of mental illness, providing support for patients, improving service delivery and care, and changing public policy. In the US, mental health advocacy is often carried out by the patient’s family members or other loved ones. At an organizational level, advocacy groups involve volunteer or paid workers and can be driven by families, as with the National Alliance for the Mentally Ill (NAMI), or by the patients themselves, as with the National Depressive and Manic-Depressive Association (NDMDA). In addition, consumer-driven advocacy movements can be mainstream (e.g., the NDMDA and the National Mental Health Association [NMHA]) or radical (e.g., the Antipsychiatry Coalition). Two components of advocacy are:

  • consumer advocacy, which refers to advocacy carried out by patients, family, and caregivers
  • peer advocacy, which consists of former patients who help others who are ill with the same condition

Advocacy groups can improve the lives of patients with mental illness through two broad, but interrelated approaches: support and education. They support patients and families by providing educational information to help them make decisions and increase their sense of hope and connectivity. These efforts may empower patients by uncovering opportunities for socializing, gaining employment, and furthering their education. In the past two decades, the growing influence of the advocacy movement has led to several trends that have improved patient and family care. For example:

  • Managed care organizations now seek feedback about patient care through consumer satisfaction scales.
  • Pharmaceutical companies are forging strong ties with advocacy groups.
  • Service delivery systems are beginning to include patients and their family members at the planning level.
  • Politicians are more supportive of funding for research, education, and treatment for serious mental illnesses.
  • Patients now have an improved environment for accessing needed medications.