Comments on International Consortium on Mental Health Policy and Services materials

Thank you for sending me the URL http://www.world-mental-health.net/ . I appreciate the opportunity for to give input. I reviewed some of the material. I have some comments and have typed them in the order of the documents so that you can follow. The main suggestions are to add the primary consumer voice, to stress the impact of abuse, and to ask about coercive practices. I also think it would be useful to weave in the possibility of recovery.  I've made specific comments below item by item without expanding or defending - please let me know if I have not been clear.

Diversity is mentioned in the Executive Summary. Primary consumers understand this to mean also including primary consumer culture and the primary consumer voice. Consumer culture is described well in this extract from a study of Consumer-Operated Service Programs (COSP):

The working description of common ingredients is organized under the categories of Structure, Belief Systems, and Process. Under Structure, one key ingredient was found to be that "staff consists primarily of consumers who are hired by and operate the COSP," and that consumers decide all policies and procedures. The environment of the program is an important part of Structure, and includes the element of safety from "threat of commitment, clinical diagnosis, or unwanted treatment." Remaining environmental ingredients are accessibility, informal setting, and reasonable accommodation

The category of Belief Systems includes the peer principle, the helper's principle, and empowerment. The first two of these ingredients express the fundamental philosophy of consumer-operated services. The peer principle is that relationships are based upon shared experiences and values, and are characterized by reciprocity, mutuality, and mutual acceptance and respect. The helper's principle, a corollary of the peer principle, is a concept previously introduced by other consumer-researchers. This is the principle that working for the recovery of others facilitates personal recovery. These peer relationships are integral to delivery of services to other consumers. Empowerment is a "sense of personal strength and efficacy, with self-direction and control over one's life," and is honored as a basis of recovery. Other important Belief Systems are creativity and humor, choice, recovery, acceptance and respect for diversity, and spiritual growth.

Process within a consumer-operated service, the third category, is always based on the peer and helper principles. It includes peer support, telling our stories, consciousness raising, crisis prevention, and peer mentoring and teaching. Peer support, of course, is the most important activity of any consumer-operated program. "Individual participants are available to each other to lend a listening ear, with empathy and compassion based on common experience." It was agreed that personal witnessing, or telling personal stories, is "embedded in all forms of peer support." Sharing these life experiences is a part of formal peer support groups, and it is often used in public education, thus becoming an effective means of eliminating stigma and making consumers more accepted within their community.

Federal Study Finds Common Ingredients of Consumer-run Programs by Sally Clay, http://www.mhamerica.org/research.htm

Templates reflect values and valence both by what they ask and what they omit.

Two-thirds in substance abuse treatment report physical, sexual or emotional abuse during childhood.
(SAMHSA)

Studies consistently confirm a 50-80% prevalence rate of sexual and physical abuse among persons who later acquire diagnoses of mental illness.
http//www.nasmhpd.org/trauma.htm

Over half of the women between the ages of 18 and 65 who attend family practice clinics have experienced some type of intimate partner abuse.
http//womenshealth.medscape.com/20063.rhtml

An estimated 25% of female teenagers stay in physically abusive relationships.
U S Department of Health and Human Services, Public Health Services, "Sexual Beahvior Among High School Students," 1990.

An estimated 10% of Latina and Asian immigrant women are physically or sexually abused by their partners.
Robert Wood Johnson Advances, Issue 2, 2000, p 6

I urge more explicit mentions of abuse, incest, rape, battering to expand the word violence and remind those using the templates of the effect of family violence and the need to address the resulting traumas.

Specific comments:

3.2 add peer organizations

3.3.1 add Internet self-help

3.3.3, 3.5.3 I see a mention of common format. Will the inventory database be constructed to allow linkages? I'm thinking about the United States Indicator project and compatibility.

4.1 What primary consumer groups participated in the 1994 international task force and the 1998 Advisory Group?

4.2 Year 2 G Each resource center should have primary consumer consultants involved

5.1 I don't see any primary consumer groups represented on the organizing committee.

5.6 I don't see any primary consumer groups in the liaison list.

7.9 I'm please to see that the web site meets minimum accessability standards. Please continue to use the W3W guidelines and enhance the current access for text- based and voice-recognition technology.

Attachment 1 Two more elements for the policy list examples - under 3. add reducing abuse, and under 9. add disability accommodations

Consultative Committee - I don't see any names that represent primary consumer groups. I'd suggest that the committee have at least 10% primary consumer members. Suggestions: From New Zealand, Mary O'Hagan, Julie Liebrich; from Europe and the UK, go through ENUSP and ask them to select some participants; from the United States, Russell Pierce and Sylvia Caras.

Questionnaire:

Section E add coercion

Diagram 1 and Diagram 2 change "physical health policies" to "other health policies" and throughout - distinguishing between mental and physical health adds to the isolation and separation of people with psychiatric disabilities and reenforces a fragmented view of health.

Diagram 2 add teen pregnancy and abuse to sociodemographic influences, add coercion to mental health policies

Under Factors which may influence ..., Environmental , add abuse, domestic violence

A1c Qualitative information on social pathology ... add abuse, domestic violence, coercion

A2d add coercion, informed consent

Table B2b, add deferred admission (up to 23 hours hospital stay without admission)

Community Care, Table 3.4 add alternative and complementary medicine

B3 Human Resources add peers, advocates, ombudsman program

Under Coverage and Accessibility, Types of treatment, add peer services as one of the examples

Under Section C, Process Elements, Interventions, add Do you use alternative therapies?

Fig. E change "manpower" to "staffing"

Table E.1 add sexual abuse, domestic violence

Table E.2 add Offer disability accommodations

Under Secondary mental health care, add Peer services

Under Specific programmes or policies, ad incest, abuse, domestic violence, trauma

Under Mental health research, include consumer researchers

Table 4.4 include abuse, domestic violence

To enable research on the impact of hormones, in the minimum data set, for women, include the place in the monthly and life menstrual cycle

In the Explanatory Notes

Under Societal organization, social pathology, be explicit about domestic violence, incest, sexual abuse

Under Cultural perspective, change the word "stigma" to "discrimination and prejudice" The use of the mental health specific word "stigma" separates and isolates and allows for more exclusion.

Under Process elements, Consumer rights, status, add seclusion and restraint, involuntary ect, and under other legislation, add accommodation

Typo: Section D Outcome Elements Socioeconomic outcomes "sociaties"

My printouts lost the bottom several lines on the landscape pages. I do not know if that is a problem at my end or in the website formatting.