YouTube: Carolyn Davies interviews me for Visions DVD

WHO is planning to develop a global atlas of the movement (this seems objectifying, about us, without us, counting us, ... <shrug>), information about existing national organizations

WHO will be hosting a global service users convention in 2009.

WHO website will collect input on community-based services.

Conference related resources www.peoplewho.org/wapr

Mental health: the consumer’s view

June, 2005, Milan

Sylvia Caras, PhD

I was asked to be on the advisory committee for this conference organized by World Association for Psychosocial Rehabilitation (WAPR) and WHO, and then invited to come and present.

There are many here whom I have met over the years at WFMH and WNUSP meetings and with whom I connect by email - Rene Van der Male, Daniel Cochavy, Chris Hansen, Tina Minkowitz, Gabor Gambos, Bhargavi Davar, David Webb, Moosa Salie, Kay Sheldon, Mary O’Hagan, Sylvester Katontaka, Iris Holling, Mary Nettle, Janet Meagher, David Oaks, Karl Bach ... and many new faces whom I hope will join us through the internet .

I am flying United, well Lufthansa with United flight numbers, from San Francisco via Frankfurt on the way over and via Munich on the way back, and have been watching the news with some anxiety as their worker pensions are reduced and unions threaten strikes as United struggles out of bankruptcy. However, all was calm the day I left, with agreements in the works, one of three babies cried from San Francisco to Frankfurt and shrill shrieks of pleasure punctuated the card game of a family of six until those children finally fell asleep. A cup of tea at the Frankfurt airport cost $3.50 and no refill of hot water - the machine only releases water when tea is pressed on the cash register, one cup.  Later I was told refills is an American custom, even more hot water, nowhere in Europe is that offered.  I took the express train from the Milan airport to the center of town and then a taxi to the Hotel Johnny. 9 hours time difference, 22 hours door-to-door.

The hotel is newly refurnished, very clean, furniture like a college dorm, plastic tablecloths in the breakfast room, a 2' x 2' shower with pocket doors so the entrance is a right angle 12 inches by 12 inches, and later it too a second to realize I had inadvertently turned the water off by mistakenly pressing the faucet in, the toilet flushes with a handle like a lever door handle on the wall above it which turns flushing water on and off, there’s no tank; it’s plumbed in; a double window reduces the noise from the construction next door, when closed, shutters keep out all light, the air-conditioning on medium has a not unpleasant quiet hum. Within a block is an upscale produce store, beautiful fruits and vegetables, and next to it a shop selling prepared salads, vegetables, prepared fish and meat to warm for dinner. And, next to that, the gelato shop! Today is in the high 60's, a lovely walking day. I took the tram (1 Euro) to the Duomo at the Center, the plaza punctuated with familiar red M’s for McDonalds and Metro, passed too many people smoking in the streets, as well as bicycles and Vespas, admired the lacy stonework of the cathedral, looked into fashionable window after window (lots of orange, apple green, some brown), saw crowds watching a volley ball match, headed back towards the hotel and saw approaching me David Webb from Australia. We sat and talked for a while about what is happening in Australia and what we expect from this conference. I stopped at a produce store and a take out restaurant, saw a parked Smart car, cube, seats two, and am watching BBC news, the only English TV channel.

I had asked in advance for the opportunity to see some local service sites, and this morning Angelo Barbato, the conference organizer and director of North Milan integrated services, about 100 staff, took me to see an 18 bed residential facility, clean, spacious, fresh smelling, director accessible, friendly; and a 4 bedroom house, 4 men, 4 women, yard, kitchen, ... staffed in the day time. All psych hospitals in Italy have been closed. In this district, there are 20 long term beds, 18 residential beds, 28 group home/supported flats beds. Psychiatrists are trained in community psychiatry, each catchment area is integrated with one psychiatrist directing all, national health pays for all, there is little or no homelessness, people aren’t diagnosed with co-occurring disorders, rather one or the other is treated in separate systems.

The purpose of this conference is to organize Italian consumers to create self-help, social employment enterprises, and to help the system continue to improve. Barbato feels there is no need for force, the psychiatrist and consumer can have a respectful relationship with negotiated results. For instance a person in a residence can decline meds one day, take them the next, no consequences though I would guess some negotiating. Barbato feels there isn’t much of a match between diagnosis and treatment and says he looks at functioning, behavior, not diagnosis. Neuroleptics and atypicals are used, no ETC.  He wants to ask WHO to support an international consumer conference, I emphasized consumers won’t have buy-in unless they are involved from the very beginning, that since WHO is emphasizing the developing world that Africa might be the location, he talked about how hard he had worked to get a representative group here and the problems with visas.

He dropped me back at the hotel just in time to meet Carolyn Davies who video taped an interview but I felt pretty sleepy and unfocused. She is making a film she wants to use to energize Australian consumers.

WNUSP held a mini-board meeting in the afternoon. As the group gathered, the other users attending also sat down around 3:30, Daniel Cochavy, Dr. Ahmad Alam, a new face from Jerusalem (later he said Palestine) and his wife Samira, ... David Oaks introduced a six point MindFreedom resolution which he had translated and had copied and will be putting forward. Around 4:15 WNUSP moved into another room, five voting board members, discussed what to expect, what presenters would be saying,  ... .  I left at 7:15 to ready for meeting in the lobby at 8 the next morning to be guided to the meeting venue.

But I didn’t sleep well, read most of the night, then slept through two alarms, skipped most of my start-the-day-right routines, had a quick cup of tea, and 21 of us were guided to a bus and then the conference site, a 45 minute trip, lots of walking and I knew I could never find my way back on that route. There were many familiar faces in the courtyard and a very long line at registration. I wandered around the site, a science museum, found uncrowded toilets and a side door into the auditorium, settled myself and then registered, but now from the front of the line. We used earphones for translation and the custom is to leave one’s passport or license as a guaranty. Since my wallet was stolen last year, I no longer carry my passport with me, staff didn’t want to loan me headphones, I calmly said you must, and that was persuasive. The auditorium is long and narrow, rows were five seats wide on each side of the center aisle, and I counted seats for 200. By the time we started, about 45 minutes late, people were sitting on the floor leaning against the walls, about 400 people, 75% users, 15% professionals, 10% families.

I gave a copy of my remarks to the translator who seemed startled and said they had not been hired to do our session, I found Angelo Barbato, and he straightened out the misunderstanding but there was some stress, confusion, raised voices and I was pretty pleased wtih myself that by being prepared with a copy for the translator because I knew it would be helpful, a potential problem or delay was averted. One of my responsibilities was to respond to the session just before mine. The prepared remarks are on the web - www.peoplewho.org/wapr - and I’ve inserted parenthetically below what the points I responded to from the WHO presentation. Usually WHO only sends one delegate; here there are three, Benedetto, Natalie Drew, and Jose Bertoloto.

We began with welcomes for Milan officials, a welcome from WAPR President Angelo Barbato (he noted no pharma funding and there was considerable audience applause) and then Benedetto Saraceno spoke. Though he is Italian, he spoke in English, a job requirement since English is WHO’s official language. He is WHO Director of Mental Health and Substance Abuse and was part of the Italian psychiatric revolution in the 70's. He’s also a former WAPR President. His presentation was clear and organized and I’ve captured quite a bit of it:

The relationship between WHO and users

The history of WHO’s attention to the relationship is poor. For instance three boxes of ignored letters had been found. This became the Voices from the Shadows WHO publication project (Google for more on this).  More involvement is necessary. In he last five years, WHO held a stakeholders meeting in Geneva during the WHO mental health year, which was open to different perspectives; has done systematic consultation with users; aimed to, but didn’t, establish a parliament, a Global Council, though three preparatory meetings were held (parliamentarians, family, users); and has promoted the user movement for instance by giving an African user, Sylvester, the founder of the Pan-African group part of a precious 30 minutes during a health conference; next week will publish a resource book about mental health legislation (I’ve seen drafts; it will include suggestions for force legislation. S.) Benedetto noted that most feedback WHO gets is grateful and enthusiastic, and it is difficult to accept the user criticism.

WHO key principles - the way to influence WHO is to influence the governments whom WHO serves. (I later said that it was not up to WHO to follow state input but to lead, that WHO had a moral responsibility to make sure that users are treated as citizens with human rights respected.)  Benedetto is proud that, though it has meant reduced funding, the bulk of WHO’s money is no longer from pharmaceuticals but from governments. (And WAPR accepted no pharma money for this conference.)  Pharma, commerce, is not a stakeholder.  WHO’s work targets poor countries, the developing world. WHO focuses on human rights violations, denials of citizenship, no treatment should violate human rights, denying access to treatment can also be a human rights violation, some 80% have no access, there’s such a gap between the untreated and the treated. (The users seated near me did not perceive this as a bad thing. S.)

Challenges of working with service users - listening to and consulting with users is very complex; we have such broad and various perspectives, who represents whom (I noted this was a hierarchical and creaky (a word Mary Nettle had used) model, that direct representation was the way we want to be heard, that the process must change. S.) ; the movement is biased towards the developed world; he mentioned the treatment gap, evidence, the full spectrum of care (I noted later that evidence is upside down, emphasized anecdote, narrative, "I am the evidence." And the afternoon research panel reiterated this. S.)

The way forward - WHO is mapping the reality, creating a global atlas of the movement (this seems objectifying, about us, without us, counting us, ... <shrug>), there is a need to organize in the developing world, to treat in the community (no locked asylums), ect is controversial, ... WHO will be hosting a global service users convention in 2009. (We need to begin our own outreach now to make sure this is an honest assembly. S.)

Next came a world wide perspective roundtable, me, Elena Chavez, Mary Nettle, Sylvester Katontaka, Chris Hansen - we all were well received, reinforced each other, made good and different points. Long, long lines for pizza for lunch, parallel sessions in the afternoon (research; discrimination) and then discussion groups, four in Italian, one in English, not translated.

Perhaps 200 attended the afternoon research panel.

Falloon: convinced of his own importance, evidence is a poisoned sword, there is good evidence that treatment works, there is an effective treatment for every mental illness but people don't get those treatments, the issue is not the science (good) but the application of the science (bad), that the problems are psychiatrists who don't comply with best practices, therefore educate consumers in these best practices so that they can direct their treatment, insist. He was the least solid and most provocative of the panelists and drew questions (rebuttals) which short-changed the other speakers. I was interested to watch that dynamic.

According to one question, there’s some momentum to stop using the diagnosis of schizophrenia.

I skipped the discussions and the evening banquet, took a shorter route back to the hotel and went to sleep early and woke Saturday, the fourth day, feeling reasonably adjusted to the time change.

Recovery parallel session - what helps and what hinders:

Farkas, Boston University: recovery means taking back one's life; use English word because when translated sounds too medical; symptom-free is an inadequate goal; rehab may (or may not) contribute to recovery

Begone, EUFAMI: son suffers from paranoid schizophrenia; he has taken back his life even though he is not very well. Re confidentiality, information must be shared with carers.

Mary O'Hagan: continuum between institutionalized services to recovery services.

Recovery services have a philosophy of self-determination, user knows best; have a purpose of recovery, living the life I want; a view of madness as a crisis of being, that meaning and value are crucial to recovery; that services must be broad, peer support, complementary treatments, psychotherapy, whatever it takes; users contribute to their own recovery, lead own recovery with chosen supports; leadership is by users, we are the experts by our own experience; and there must be no force, users take responsibility with chosen supports.  Independent living.  Productive and valued role in life.

As opposed to institutionalised services, the professional knows best, maintenance is the best one can get, there is no value or meaning to madness, drugs and hospital are the way to be fixed, and professionals are the experts, and must force user for their own control and protection. Important people in one's life are paid to be there.

Iris Hoelling: helpful factors: absence of psychiatry, of drugs; attitude of supporters towards the person in crisis; full legal capacity at all times and without any exceptions; harmful factors: psychiatric drugs, psychiatry diagnosis, lack of independent full information, lack of choices, lack of user-controlled spaces, labeling devalues and alienates one's individual experience, is a violation. It can be a lifetime struggle to reappropriate one's own life. Often people have good reasons for going crazy. Iris is calling the interventions violent. The concept of violence, the word violent, is comfortable for me, more than the idea of torture, suggests also domestic violence, violence against women.

Talbott, professor, bioethics: excited by consumer-run services; used a medical experience of his own to compare what helped and what hindered. Lay press help columns as a data source: letter placed in Dear Abby asking what people, people with severe mental illness, don't tell their doctor - faith/religiosity/spirituality which leads to hope; importance of non-medical personnel; importance of family; coping skills not taught; encouragement from one key person; wish for help through the decision making process; users don't tell physicians the truth; need to grieve lost lives; anger at our fate; hallucinations are helpful, not bad; … Psychiatry was first hijacked by psychoanalysis, then psychosomatic became somatic; now real medical diseases.

Farkas: recovery is not linear, recovery is individual and unique even though there are techniques and themes that help, core set of values - person-oriented services; partnership, nothing about us without us (my understanding of this phrase is not partnership but rather the individual is central and directing and the providers are for technical expertise, not partners, not equal but secondary to the individual); choice and self-determination; hope.)  See Center for Psychiatric Rehabilitation web site for recovery information and data repository.

Iris: responded to the use of the word partnership, as did Mary. Participation is going to someone else's table; leadership is having your own table and inviting those you choose.

Questions yesterday and today were speeches; for this panel, Italian users are telling their own experience. A dozen lined up with written remarks. Jobs, no drugs, …. Farkas intervenes, asks for shorter interventions, wants to manage. The next user ignores, tells her story of misdiagnosis, … I think people were invited to come, speak, tell their stories. When a user gets stuck at the microphone, comrades in the audience applaud for a bit which gives support and some time to focus. It was startling the first time, then was very good to experience.  Marianne tries to manage, shorten - user objects. Remarks are prepared, unsettling to be asked to shorten.  Farkas: there will be a discussion group after the break. Next user, thinking he might be cut-off, begins to object. He states that calling psychological pain a disease is a big mistake. Next woman was helped by yoga, reminding her that she had a body. Next: pain has meaning, looks for God, led by heart not head, poetic intervention. Next: providers must step back. How can providers learn to not feel threatened, power issues. Iris: it's OK to make choices that others might not agree with. Farkas takes microphone to close - providers enter field to help, power issue comes later. Original desire to help isn't fulfilled so provider must reorient to different strategy.

After lunch, Tina and Gabor spoke about the UN Convention work, including issues and monitoring. A Milan dignitary spoke.

Then Jose Bertolote from WHO.  WHO is a closed club of 192 nations.  Saraceno et al are the Secretariat. You must influence WHO through your health ministers. The Resource Book suggested legislation is to ensure that force is not abused or over used. There is not an obligation to agree on everything. Interested parties instead of stakeholders. WHO believes users are not the only stakeholders. WHO must listen to all and find what we agree on. There may be points on which we will never be in agreement. Four projects: some we will do anyway, some if you agree, some with your cooperation. Users need help in organizing to make their voices heard - WHO is willing to help.

1. Promote consumer organizations in poor countries.

2. Develop an Atlas of service users - do together

3. Resource book on mental health, human rights, legislation - main reference of all governments to improve mental health legislation - disagreements clear, primarily ect and involuntary. ECT statement crafted by users (David Oaks); force still staying there.

4. Forum on community-based mental health care, WHO web site will provide place for input on successful and unsuccessful community services.

Working group reports:

1. English speakers, David Oaks: inclusion; deep differences about stigma campaigns, force, psychiatry itself, language; but agreement when focused on core principles and values - human rights is an absolute priority, choice, recovery is possible; self-determination is important; diversity; more resources needed, change in power balance and structure; involved with and running research programs. Unresolved - survivors v users; anti-psychiatry portion; allow a place for anger and hurt; truth and reconciliation commission; listening and dialogue; where is the place for independent groups? - main theme, inclusion and building towards 2009.

2. Recovery - self-esteem, self-trust, strong relationships, self-help groups training professionals, pain has value, choose own carer/professionals.

3. Social inclusion - informal networks, gap in perceived basic needs from country to country and from underdeveloped to developed, right to vote, services must support ongoing social inclusion, role of city (Milan supported this conference), role of culture in setting priorities, authenticity, image raising.

4. Stigma, discrimination, human rights - violent psychiatric services add to perception on stigma; rehab focuses on fake activities; lack of integration; shame; move from user to person

5. Crisis management is a problem, importance of subjectivity

Oaks - sign name and email address for Declaration of Milano.

Janet: Secretary, WFMH: Churchill: this is not the end, it is not even the beginning of the end, it is perhaps, the end of the beginning. In the last 12 months, WFMH has issued a call to action with respect to metabolic disorders, an intervention related to the tsunami, co-occurring is the theme of this year’s mental health day theme, Cairo congress. Themes and threads from these two days if we can weave it together. Janet has visited with users in over 48 countries. We must see the range of interpretations, what service or service lack actually means. Dedicate next activities to users and survivors who have died, the unknown user, the unacknowledged survivor, who didn’t make it to see services or rights, who didn’t make it at all. We are here because of those who went before us. Mandela: "When I get to the top of one great hill, I realize that there are many more hills to climb, I can only rest a moment for my long walk is not yet ended." Janet: go and walk together.

Barbato: social inclusion a key mission, elimination of damage caused by treatment, stigma campaigns have had dismal results, must be rethought.

At least 100 stayed to the end.

I got reimbursed for my travel in US dollars.  I'm not at all comfortable carrying around so much cash.  Apparently some were only offered plane ticket reimbursement; others had experience and asked for the costs of transfers, travel food, ... Kay Sheldonand I thought we should create a global user travel expense policy document to use as a standard and we will work on that via email.

I put a web page of conference related resources for them at www.peoplewho.org/wapr and there is a link from there also to my presentation (www.peoplewho.org/wapr/remarks.htm)

WNUSP again held a board meeting, Mary O'Hagan graciously facilitated, some infrastructure decisions were made, Iris and Moosa were selected to co-chair with Tina.   There is concern from some that working with WHO will be as unpalatable as working with pharma.  Apparently in the developing world, the WHO local field offices are completely corrupt, as, apparently, are the governments.  How to organze in that environment, whether WHO's help will be helpful, will remain problematic.

Kay, Sylvester and I took the train to the airport, check in for the first leg to Munich took 20 minutes with only three in front of me, passport control had a long line, another 20 minutes, security, bus to plane, short flight, lovely shops at Munich, even more thorough security, bus to plane parked in the middle of tarmac, full flight, compact plane - seat pocket is shorter, shallower, holds less, underseat space seems smaller, less room between seats, bathrooms are downstairs, 10 of them, larger than I'm accustomed to, lunch was OK, Lufthansa crews are very efficient, move quickly, seem very busy, and are helpful and friendly.  This flight has wireless internet access, but I didn't bring my PCMCIA wireless card so will have to wait 'til home to send you this report.  I don't think I have enough battery life to use email effectively in the air, but it would certainly make the time pass quickly.