Vancouver Report, July 2001
World Federation for Mental Health (WFMH) pre and post Assembly Board meetings, Assembly, World Network of Users and Psychiatry
I flew United from San Francisco to Vancouver, turned down page corners in their catalog for at least $500 worth of must-have gizmos that I could order from my plane seat by phone and credit card, and left the temptations and the catalog on the plane.
Persimmon Blackbridge interrupted preparing for a gallery showing of her work to show me a bit of Vancouver including an elegant organic food store for stocking my hotel room refrigerator.
As I later walked around I noticed a tall bronze mirrored building. In the gray light it reflected and distorted its surrounds and gave back elongated gothic images, reminding me of Gaudis work..
The WFMH Board rejected my recommendations for user/survivor review of educational materials and inclusion in the planning of any sponsored event, and established a committee to come up for a proposal for inclusion.
If users/survivors have interest in participating in planning the Prevention and Promotion Symposium which last year was very scientific, send your name firstname.lastname@example.org. Say that you are replying to the invitation of the pre-Congress part to participate. The report of the December 00 meeting will be out in October. The planning continues without meaningful input from People Who.
Ive been surprised at how much more voice I have at this board meeting and anticipate good inclusion under the incoming chair.
From the Americas: Judi Chamberlin, US, co-chair, and Gisela Sartoria, Canada; from Asia and the Pacific, Helen Connor, AU, and Masaji, Japan; from Europe and the former Soviet Union, Karl-Bach Jensen, Denmark, treasurer; Iris Holling, Germany, co-chair. There were no members to be nominated from the fourth region, Africa and the Middle East. The Board will reach out. Eva Hansen from Denmark agreed to continue as secretary even after the current funding is used up and it was agreed that the WNUSP Secretariat would remain in Denmark. The next General Assembly will be in two to four years, place not yet decided.
1300 people from 59 countries are registered for the World Assembly on Mental Health. There are 15 plenaries (Im chairing one), 40 workshops, 40 symposia, and overwhelm of answers to the Call for Papers leading to 400 presenters selected.
The WNUSP General Assembly agenda for Friday and Saturday is listed in the WAMH program book along with other pre-Assembly meetings.
Emerging into Light is a new symbol of resilience and recovery from Canada. Details and download:www.cmha.ca.
The World Health Organization report on mental health will be released on October 6.
There are a lot of consumers and users and survivors here - I will mention some names as I write about other activities, and I will not try to list everyone I know.
Pat Risser and I met Sunday morning with the consumer advisory council of the Canadian Mental Health Assn. We discussed universal issues and international themes.
Users and survivors met Sunday afternoon to get acquainted. 22 people were there from mostly the US and Canada, one from Belgium, one from the UK, one from Japan. Judi Chamberlin emphasized the two prongs to our activism, human rights and decent services.
The U S scholarship winners met. Joel Slack explained what was expected of them, gave some international guidelines. I only knew 9 of the 23; I was delighted to see new faces!
Support Coalition International organized a protest - signs, speakers, consumers, users, survivors, chants, legally sited just at the entrance to the Convention Center. CCHR (Scientology) members formed a semi-circle and their black T shirts framed the colorful posters and placards. Jeanne Dumont and Jean Campbell created five Mad Pride Chants. One of them: "Keep your outcomes; keep your force. Western psychiatry is way off course."
Opening Ceremony: Songs, welcomes, welcomes, welcomes, and more welcomes. The outgoing WFMH president used the word discrimination; the Canadian MHA Board president used the word prejudice. We were then bussed to a reception and I made dinner of the hors doeuvres - sushi, pasta, salmon, eggrolls, canapes, and lots more.
The whole WFMH Board is staying at the Days Inn. Showers are becoming problematic - whenever anyone else turns on hot or cold water, the shower water temperature changes!
Monday: once inside the convention center there is a walkway marked by posterboards announcing the gold sponsors - Wyeth-Ayerst, Lilly: "Answers that Matter", AstraZeneca, Janssen-Ortho, and Pfizer. I said "Hi, Steve" to NIMHs Director Steve Hyman. He looked at me, my name badge (People Who, Santa Cruz), smiled, and turned away, dismissing me, it seemed to me, as not an important player.
DeVriess chaired the opening session, wove consumer interests throughout his remarks. He has fascinating data and an incisive grasp and talked too fast for me to capture for you. He is resigning as WFMH Secretary-General and until a CEO is funded and hired, that role will be carried out by the incoming Board chair, Pirkko Lahti from Finland.
Www.worldbank.org - Public policy factsheets - Mental Health at a Glance. Banks mission is to alleviate poverty. Data is needed to show that mental disability leads to poverty and to demonstrate that interventions can reverse the dysfunction thus leading to increased productivity and economic development. This would match the World Bank mission and the World Bank then might be interested in providing loans.
Weight gain is a major reason for treatment noncompliance and some patients with the most gain have the best clinical response. "Patients with increased appetite gained significantly more weight." "Younger patients gained more weight than older patients." Behavioral interventions caused some weight loss except for those taking clozapine. More than half of those taking atypical antipsychotics gained more than 12 pounds.
Jones, B, et al, Weight Change and Atypical Antipsychotic Treatment in Patients with Schizophrenia, J Clin Psychiatry 2001; 62 (suppl 2) p 41
Lillys "answers that matter" to weight gain from Zyprexa is a Health Steps calendar that suggests drinking water instead of fruit juice, eating popcorn instead of chips, walking, and the like. To my mind, this is placing the responsibility for the weight on the patient, not the medication.
Www.pavpub.com - training materials from the UK
Lots of consumer exhibits, a few dominating pharmaceutical exhibits, muffins and snacks for sale, and no free advertising post-its.
The Centre for Dialogues main room has four concentric auditorium style circles divided into four quadrants allowing perhaps 150 people to sit comfortably in leather chairs that adjust for height and back slope. The most prestigious seat is in the center of the back row. There are microphones at each place to permit voting, translations, and requests to speak. Perhaps 55 accepted the invitation to a Ministers Round Table where the health/mental health ministers from Canada, Iceland, Ireland, China, UK, Indonesia and others spoke. I was there as a WFMH board member. The interesting point to me was made by the UKs former official, Bowis, who was dismayed that the medias focus on violence erodes the "public confidence" in the policies of the administration. Public confidence without which in the UK, the ruling party doesnt stay in power. In Ireland 10% of the admissions are involuntary. They speak of "compulsory" treatment and "detaining" people. Mental illness is becoming a serious health and social problem in China. In the developing world the issues are so different - poverty, basic health care, lack of physicians, ...
Migrants are more at risk of receiving a mental illness diagnosis - the suggestion was made that perhaps feeling alien, distrustful, contributes.
Peer Support Resource Manual, generic information on how to start a self-help group available from Victoria-Schuckel@moh.hnet.bc.ca
Discussion on globalization, exploitation, possibility of different forms of distribution, corruption in developing countries, reverse some of the measures that pamper the rich everywhere, protect the livelihood of people everywhere, proposal for an assembly declaration, we have failed with the goal of health for all in 2000, address how mass media promotes violence world wide, social justice issues are the prime determinant of health.
"New from Zeneca. A treatment for schizophrenia thats as good for the body as it is for the mind."
Daniel Cappon, the chair of the session at which Mary OHagan was presenting, was so scared by her that he wouldnt let her complete her remarks, told her she was out of time, allowed the other presenters to complete, and ended the session an hour early. Mary responded when interrupted by gracefully leaving her place at the head table and the session. I guess she was so effective that he cut her off and ended the session.
Several plenary speakers have scheduled so tightly and optimistically that they didnt allow for air and other travel delays. The result was some no-shows, some program rearrangements. Others scheduled so tightly as to only give their presentations and not stay for the other presenters in their sessions. There was fumbling about overheads, slides with fonts too small to read, too much material to cover and hence a rush to the conclusions.
83% combine alternative medicine with Western; 72% dont tell their doctor.
About placebo: "There is no stopping the belief in self-help and sel-efficacy."
"Expansion of use of psychopharmacology across *all* age groups is the direction of the future. Preventive psychopharmacology will treat people *before* symptoms arise."
The afternoon sessions are not well attended, 20 - 40 people, even the wonderful invited lecture by Julie Liebrich from NZ. I have the .doc file and will circulate the URL via the iris list as soon as I get it ftpd. David Oaks is presenting on Internet advocacy.
Some 60 users and survivors gathered at noon to learn about the WNUSP work on Friday and Saturday and plan for what else to do this week.
Involuntary treatment discussion: Discussants - five middle-aged, middle-class-appearing, white males.
Bowis: politician, love of mental health, user-to-be" he said, legislation to protect, compulsory treatment must be used for the protection of patients, families, carers, society as a whole. Families are part of the care team. More humane tools. How manage risk. Patients and society need the safety net of secure wards and compelled inpatient treatment. Its in the patients own interest. Its a necessary option. Equitable balance. Continued compulsion required at discharge. If no force people wont receive the treatment they need and we will fail to carry the public with us in our drive for more services. (He assumes the validity of the model and then argues that people must be forced to accept that model. Thats circular. My impression is that this speaker is very smug in his belief that he knows how to do good for others. Politician. Rhetoric. S.)
Conroy, attorney: John Stuart Mills on power. The individual is sovereign. (Im reminded of my impressions of the aftermath of the US presidential election where it seemed one side argued rhetorically and the other intellectually.) We lock up those we dont know how to treat - epileptics, lepers, orphans, ... Impact falls on the poor and vulnerable. Prison parole contingent on treatment. What are the principles of fundamental justice? Issues of liberty, security of the person, privacy. Abuse of power; behind walls, providers not accountable, legal remedies not available. (Conroy talks about "the mentally ill," feels forced treatment is occasionally justified, finds treatment for danger to self problematic.)
Both speakers agreed that involuntary treatment is occasionally justified. The was no debate
Neither speaker discussed whether treatment was efficacious or even benign or the right to force into treatment. Right to detain or confine wasnt separated from the right to treat.
After, disappointed users and survivors talked to the presenters and to some WFMH Board members and extracted a promise that WFMH Board members would come to a user and survivor meeting the next today to discuss how to make the next Congress in Melbourne more inclusive.
Focus of International Labor Organization (ILO) on mental health; work-related issues; ... healthy, responsive work environment;
deVriess: ... stigma, discrimination is a better word. Massive decrement from programs we start to programs sustained five years later. Needed: a science of sustainability. Inability to deal with youth in the world, problems starting earlier, longer number of years for a person to live with the disability, medicines promise of cure is only half true, we need life-time attention. Mental health affects 25% of the population; mental health should have 25% of the budget. Transition from industrial to information economy having profound emotional impact at every level of workforce including executives - society rattled by change. Job security no longer a given. Family dislocation a greater threat. Retirement planning less straightforward. Working population is hurried and worried. The workforce is exhausted! Words are being given to burnout, overload, in Japanese (working oneself to death), Dutch (overspun). Lack of job control may be as much a threat to health as smoking. Work Life Crisis: Business is awakening to the demands of the balancing act that many working people face in resolving work/family conflicts. The issue is undermining the equilibrium of the workplace: One in three employees experiences work-life conflict. Translates into mood swings and , ultimately mood disorder. More than 50% are experiencing work-related stress. Enslaving email: information overload is a major source of stress in modern workplace. Six complex issues to resolve: Examine problems of work re-entry for persons returning from long or short term disability due to depressive and addictive disorders. Clarify the invasive nature of modern workplace stress. Promote the search for mental health in cyberspace. Seek alternatives to work/life stress. Develop health based standards of business productivity in settings where the efficient and profitable management of business volume is a must. Apply a prevention model in all sectors. Illness is an inseparable aspect of being human. Form categories that lead to inclusion. Instead of todays duty to be health, a more integrative aspect of illness into life.
User Survivor Caucus and meeting with WFMH Board members. 35 attended. Resolutions - full disclosure of funders; suspend the development of the World Bank mental health template until there is user and survivor inclusion and reflection of u/s views, against involuntary ect, no treatment without full and informed consent - full resolutions will be both in WFMH minutes and on the WNUSP web site.
Three other board members and two AU organizers attended the user caucus and received this input about full disclosure of pharma funding, early involvement of WNUSP in content planning, priority of scholarships for user and survivors esp from poor countries, no pharma domination (organizers - thats a perception; we will require drug company funding, high consumer profile promised), no WPA co-sponsorship (Ahmed: if we dont include them they wont change), inclusion in plenaries, prominence of human rights issues (Ahmed - alternatives), will work towards preserving user seats on the board (Pirkko - user as WFMH staff), representation (organizing committee is local, advisory committee, scientific committee). Ahmed: All promises will be kept also for Cairo in 2005. Countries are expected/encouraged to fund their own consumers (Van Horn: set a recommended dollar/number quota. Ahmed: try for funding by subject/track, not mental health, but womens issues, abuse, substances, ... )
General Assembly: Janet Meagher was elected Honorary Secretary. I was re-elected, and re-appointed to the Internet committee. Five resolutions were introduced: One about the global mental health template was referred to the board, full disclosure of pharma funding was adopted, a condemnation against involuntary ect was adopted, a resolution against forced treatment was referred to the board, and a resolution requiring inclusion in any project WFMH lends its name to was adopted. The full language of the first four will be on the wnusp.org page in about a month and in the WFMH minutes. The fifth, that passed:
Any event sponsored, partnered or endorsed by WFMH should demonstrate significant and meaningful user and survivor participation from planning through evaluation.
Also passed: Resolved, that the WFMH joins WNUSP in condemning the administration of electroshock against the express wishes of any person.
And passed: Resolved that the WFMH joins WNUSP in calling on all organizations and conferences addressing psychiatric issues - including the World Assembly for Mental Health - to provide full public disclosure of the amount of funding they receive from the psychiatric drug industry.
Overheard: that six pharmas each contributed 100,000 and that the conference cost over 1,000,000. (That may be Canadian dollars, roughly 1.5 Canadian dollar to 1 dollar US.)
A parliamentarian ran the meeting, there was considerable testimony pro and con, high feelings, orderly process, and users prevailed. Richard Van Horn was eloquent against the move to just refer things to the board without a vote - how that disempowered the membership - and enough others agreed to defeat most of the moves to refer. And the resolutions had the votes to pass! Some of the speakers: David Oaks, Karl Bach, Gisela Satori, Marc Jacques who calmly pointed out how referring to the board was avoiding, ... It was so successful that some who had been ambivalent about being around so much pharma advertising and so many biological presentations felt rewarded for having stayed the course.
Kudos to Support Coalition and David Oaks for bringing draft resolutions to the WNUSP meeting and to Leonard Frank and others for crafting an anti-ect resolution that got adopted!
Im running out of steam and not capturing all the wonderful networking and events that have been happening and Ill continue with bits and pieces of what is going on and what I remember.
I spoke a bit this morning with Patricia Breggman, Canadian attorney, and outpatient commitment law and invited her to dialogue with all of us since at least one Canadian province apparently has not too offensive laws on the books.
I got appreciations from several about my facilitation skills which made me feel good since I enjoy that role, in particular that I was able to keep our session on time. And my presentation was appreciated. (www.peoplewho.org/readingroom/preventabuse.htm)
Children of people with psychiatric disabilities have issues and I think it would be useful to at least start an email list to discuss some of their issues and allow them to network. This need has been raised before, and Im not aware of any actions that have been taken or group forms.
WFMH post-assembly board meeting. As observers: Dick Van Horn, Bill Compton, Pearl Johnson, Jane Paleo, Elaine des Roches, ...
There were new board members, so we all did introductions. There are two of us self-identified as consumers, one as a carer, and several other board members/officers who are family members.
Karl Bach and Gisela re-iterated WNUSP requests for the Melbourne meeting. Requested: mention of user/survivors in First Call, disclosure of pharma funding and a low pharma profile, early involvement including WNUSP board, inclusions in plenaries, several points of view in each session to generate a real discussion, dedicated meeting space, scholarships, user/survivor track.
2007, Hong Kong has a goal of scholarships for all consumers.
WFMH created a consumer advisory group, one nominee from each region put forward by the regional vice-presidents, one member of WNUSP who shall be at least an individual member of WFMH, no more than three carers, and board members who identify as users and carers.
I objected to the word "stigma" and got support though there was not a resolution.
The board received input from members about how the consumers from Taiwan were intimidated at the WNUSP meeting by some members, that their culture was not respected when they didnt vote (because they had not time to understand/discuss/reflect), that one was in tears. Other board members reported verbally harassment from WNUSP members. Partly as a result of this, and partly as a result of the lack of infrastructure within the WFMH, a committee will be creating a process for receiving and acting on resolutions and only WFMH members can put forward resolutions (others can put items through a member). Hence there will be more reasons for user/survivor groups to join.
WFMH is choosing an enamelled custom pin and considering developing a product line. (WNUSP might also like to create a logo, lapel button, T shirt, tote bag for identification and for sale to raise money. Having it done in the developing countries might be less expensive.)
When Im home, I try to arrange my calendar so that I dont leave the house two days in a row, to give myself time to process and regather myself in between meetings and social events. Today is the 11th day Ive been here and in meetings and while I am functioning some days well and some days adequately, I feel as if it is a persona playing a role and that I am not processing the important emotional and non-verbal parts of this. I am certainly not "here."