World Psychiatric Association
Yokohama, Japan, August 23 - 29
Sylvia Caras, PhD
* Saraceno: WHO wants to build on the wonderful momentum of the World Health Report by creating mhGAP (Global Action Programme). "WHO cant do this alone. We need a global alliance with consumers. We dont know how to work with consumers. We need to be taught."
* The average length of inpatient stay in Japan is 400 days. More than 30% of hospitalization is over 10 years.
* The WPA is proposing a site visit to China to review the Falong Gong charges.
World Psychiatric Association Anecdotal Notes and Japan Travelogue
Yokohama, Japan, August 23 - 29
(Much of the following is anecdotal and about my experiences as a traveler in Japan.)
More than a year ago, because of my service on board of the World Federation of Mental Health, I was asked if I would help the WPA identify resources to shape a "partnership" theme for their annual world congress. I gave them names of some of the international groups, nearby users and survivors in Japan, Australia, New Zealand. I was appointed to a planning committee and then was myself invited to come to be a presenter at a Partnership Forum organized by their president-elect Ahmed Osaka, Egypt.
I had been pleased to share names, help with planning (which didnt turn out to be significant) and the idea of speaking to a room full of psychiatrists gave me pause. I thought about if for a while, wondered if I would be able to manage my anger and reactivity and the memories that would surface, was reminded that if it were not I, some other consumer would be chosen, and decided that despite the only partial cost reimbursement (they are paying for air, 5 nights hotel, registration; I am paying for transfers, meals, extra hotel nights; no honoraria) I decided to accept and to also take the opportunity to do some touring.
I reached out to you, my e colleagues, to ask if you had three things to say to psychiatrists what would they be, and found only one resounding theme: listen. So based on that guidance, that is what I spoke about -- language and listening. The web page I made for the presentation is at www.peoplewho.org/wpa and the talk is linked at the bottom of that page.
The non-stop flight from San Jose to Tokyo is about 11 hours; there is a 16 hour time difference. So I left CA at lunch-time and arrived mid-afternoon in Japan. It took perhaps 20 minutes to clear immigration and customs and buy my $30 ticket for the 90 minute Airport Limousine (this is a large bus) to Yokohama station. The system is punctual and efficient: as soon as one bus departs, the passengers for the next queue, their under-bus luggage is tagged and lined up, and then when the bus arrives, tickets are taken and passengers board while others load the suitcases. On arrival, bags are removed and lined up just as fast as the passengers debark and claim checks matched. I went through the station to the street to find the taxi dispatchers, white gloved, spoke English, knew my hotel name and told the driver. The cab seat and backs were covered with a sparkling white terry-cloth-like material, the driver wore white gloves, and before he drove away he put on his white brimmed cap. The ride cost $8 and took less than 10 minutes. I was left in front of a commercial looking lobby door that clearly said Sakuragicho Washington Hotel and had no staff. Gratefully for the wheels on my suitcases, I opened the door, went inside, saw elevators, followed the instructions to the lobby on floor 5, and exited to an area filled with some 20 Japanese men waiting to check in.
I remembered then the Japanese business hotels, modest, serviceable,"inexpensive" and was reminded of the mid-range Category C I had chosen ($100) for the conference organizers to book. As I rode up in the elevator to floor 10, I wondered just how small the room would be and was relieved when I used the key card to open the door, placed it in the slot just inside the door to turn on the electricity, that my large suitcase would actually wheel into the room.
Theres a 3' wide entrance hall, on the right a 15" wide closet with accordion door and three fat hangars and then a step-down bathroom which includes a soap dispenser, a shampoo dispenser, a disposable razor, a disposable toothbrush and tiny tube of toothpaste, a bath mat, bath towel, hand towel, a hair dryer with a trigger so there is no way to leave it on without holding it, two built in toilet paper roll dispensers, a covered wastebasket the size of a pound can of coffee, and a toilet with a bidet and spray function, and, I later discovered one section of the over-sink mirror that does not fog up after a shower because it is heated. A sign advises me to close the door when showering since the steam heat will set off the fire alarm system. The bedroom is 7' x 8' filled mostly by a 4' wide bed and a 15" deep desk area. The bed has a hard Japanese-style pillow; on the closet shelf there is a softer alternative that I choose. The air-conditioner controls are in Centigrade and Im guessing at how to set it, trying to remember the conversion formulas, where to add/subtract the 32 and multiply divide by 5/9, 9/5). The desk area has a TV (I have found golf, baseball, stock market and no English channel), chair, a small refrigerator, two small shelves, a center drawer full of bibles and hotel literature, a phone (one of the buttons says: massages), an electric outlet (same shape and voltage as US), and a hot pot and tubes of tea, one green, and one black on a tray with a cup and a glass.) On the left, underneath, is a flashlight, permanently charging, attached to the side, and a set of two wastebaskets, lined in plastic, one with no top, one with a cover and a hole in the center.. The headboard of the bed has a 5" ledge and on the side a console with controls to turn off the bed light, room light, desk light, and night light, and a clock with alarm. Theres a box of tissues and the advice that the container hold two boxes and when I have finished one to please use the other. I have carefully unpacked, organized, place my possessions on/in all available spaces, and am sharply aware that it will take much longer to dress and prepare in such a small space and will be a good exercise in being present - one space out and Ill stub my toe or trip! The room and everything in it is immaculate, seems brand new though I have the sense that it isnt. Im pleased at how quiet is the air-conditioner hum, the refrigerator hum. These "motor" noises bother me a lot (I often wear ear plugs and travel with a white-noise making sound conditioner) and I have noticed that the sound in the US is much more problematic than when I have been in other countries.
The first morning, I walked out of the hotel door, eager for my first daylight sight of Yokohama. To my right was Starbucks, to my left TGI Fridays.
Saturday morning: I got confused over the date, time, thought yesterday was today, wandered around during a gray day surprised things I expected to be open werent, kept opening and closing my umbrella as it misted and finally poured, explored how to get from my hotel to the conference (elevators, escalators, moving walkways, through two interior malls), registered, noticed the names of users Ron Coleman (UK) and Janet Meagher (AU) in the program, was pleased that I too was in the program (none of my Partnership Forum participants had yet been listed on the web schedules when I left the US) and was pretty disappointed that they left out my abstract since I had included the peoplewho.org URL and hoped to get some visits on the page I created for this Congress <sigh> and was surprised to see my affiliation as WFMH which was indeed why I was invited, but I had submitted People Who.
I took the shuttle bus from the hotel attached to the Congress to the Yokohama Station and explored an underground city of shops and a high end department store and took the shuttle bus book and made sure I knew how to walk back to my hotel (20 minutes). And I found a 24 hour small convenience store with some refrigerated prepared food and bought sushi and a salad for supper. I still havent turned my body clock around and was up most of the night browsing through the Congress materials. It was hard to see some proud titles about subjects with which I disagree. WHO is one of the four Congress co-sponsors; highest level of support is from Janssen-Cilag and Organon, Eli Lilly, and GlaxoSmith Kline.
At the train station, from which many will walk to the Congress, Falun Dafa (Falun Gong) members were distributing newsletters in English and Japanese about psychiatric abuse of their members in China. It is well done, contains stories, letters from leading professionals denouncing this misuse of psychiatry, and a request to join the Human Rights Watch campaign being started.
I collected the reimbursement, a slow and cumbersome process which started late, I was told, because of a user protest of the Congress (I didnt see any signs pf protest when I entered), said hello to the people whod organized the WFMH exhibit, signed up for a technical visit to a hospital in Tokyo, and stood in line for the Opening Ceremony which, because the Prince and Princess would be attending, had lots of security. The elevators and escalators in the Exhibition building had all been turned off and only one exterior door was open. We were guided outside upstairs, across a street, downstairs, and to a large plaza were hundreds of people were waiting. Ushers kept forming parallel lines, perhaps two dozen lines, people were cooperative, if confused. Then an entrance door to the National Convention Hall was opened and a line was moved horizontally until it was in front of the door, invited to go forward, entered quickly, bags were inspected by perhaps 20 staff, and we moved to our seats where again ushers made sure the front was filled first. This began at 3 and by 4 when the program started officially the very large hall was completely full. While we waited, and again at the end, we were entertained by a flute and drum concert. The haunting flute and the bold insistent drumming were a startlingly wonderful combination. There were several sweet childrens choruses, well orchestrated remarks and welcomes. The translator for the Vice Minister of Health impressed me with the language of wellness and recovery and inclusion - I dont know what the actual Japanese said. There are 5000 delegated here from 120 countries.
From the abstract book: a lecture abstract from Allan Tasman, U Louisville School of Medicine, about a biopsychosocial approach that makes me want to know more about his work, and his is the WPA Zonal representative for, I guess, North America; a new Mind and Body science of psychoendoneuroimmunology that makes me want to look up this word on the web.
As Im typing, reading, thinking, Im aware how important it is to me to write these notes for you. I need to process all this, share my dismay and my pleasures, have some one to talk to when I am so far way. Thanks for being interested; it makes a difference to my willingness to continue to know you are out there.
The room in which I was to present was changed, from a set up of maybe 50 chairs in a large square, to a huge room with rows which might seat 500. I took a deep breath and re-oriented myself but as it turned out the attendance was sparse, Im guessing 75 - 100, despite that the chair was the WPA president-elect. I dont think he was too happy. Chatting with the other speakers, I discovered we had all had logistical problems, one persons talk title had been imposed on her, ... There were no speaker name cards, we sat in the front row instead of in the front of the room, our bios werent used for the introductions, and there was no time for any questions. So much for a forum. Speakers were from WHO, World Bank, GAMIAN, and an international nursing association. Okasha: Mental health doesnt correlate with brain disease. I was introduced as a "leader of WFMH;" the board would shudder to hear that since I have been instructed by staff that I am not to speak for the organization. My presentation was well received and people I know came up to me after and told me it was powerful. I was told the room was absolutely silent and attentive. (I seem to go somewhere else when I give a talk that Ive prepared carefully to an audience Im afraid of. So its important to me to hear the feedback, since in a sense I wasnt there <smile>.) Saraceno: WHO wants to build on the wonderful momentum of the World Health Report by creating mhGAP (Global Action Programme) which has four core strategies - information, integrated policy and services, advocacy re stigma/human rights, enhanced research capacity - and four goals - reduce burden, reduce stigma, better services, increased country capacity. "WHO cant do this alone. We need a global alliance with consumers. We dont know how to work with consumers. We need to be taught."
I had lunch with John Copeland, WFMH Treasurer and Florence Baingana from the World Bank (who is working with Judy Heumann to include People Who as experts) and we talked about how to get WFMH up to speed and respectful and inclusive and what strategies would work in Africa for raising user consciousness and who has the right to determine the course of a life, whose values decided what is health.
Theres a huge pharma presence here and it is totally transparent. Lots of clarity about the sponsorship, who paid for the lunch, ... It isnt bothering me anywhere near as much as the biological orientation of most of the presentation titles. Theres a lot of free food and the price is attending the presentation. I havent done it but it appears that you enter a room, sit down, and after the door is closed, a box lunch is served. In the Exhibit Hall, I have to actual enter the particular area and be greeted, maybe sign my name or play a little game, to get the freebie. Lots of fans, a T-shirt, totes, a kite. Not many pens or post-its.
In the evening I spoke at a Japanese users meeting to which Mari had invited me. And I asked Janet and Merenda to come. I renewed acquaintance with Makiko and one other user I had met in Vancouver. There were about 40 there. They had invited a lawyer and a psychiatrist to discuss a proposed law users area against, and Mari had asked me to talk about the UN Convention and the New Freedom Commission on Mental Health, and had provided a translator for me.
The average length of inpatient stay in Japan is 400 days. More than 30% of hospitalization is over 10 years.
Tuesday evening: This morning I was in my seat waiting for the plenary to start when a powerful looking man stopped and said "Excellent presentation." I smiled and then he said that he was talking later on and was going to discuss how he included the patient view and that I would be interested and should come. He didnt introduce himself, just told me the time and place. He then greeted several other people, exchanged cards, and I dug out a card and handed it to him. Then he told me that he was Board Chair of the World Association for Social Psychiatry (WASP? ASP?), they would be meeting in Kobe 10/04, the Rumanian GAMIAN psychiatrist was on their committee and perhaps Id like to contact her. I nodded politely and he then said did I know Laurie Flynn and that she was a good friend of his and didnt I admire her. I said she had done considerable damage to people with psychiatric disabilities by promoting our image as violent and I wondered if he had heard even one word that I had said in the talk that he found excellent <sigh>.
I had been waiting for the morning plenary, a presentation by a Japanese "tea man" as he described himself who spoke about the tea ceremony, some research on its calming effects on people with psychiatric disabilities, ...
I left before the end to keep an appointment with Benedetto Saraceno, the director of the WHO mental health program. He had asked to speak with me about how to involve users, that he wants to have WHO create a volunteer consumer advisory committee with one or two representatives from each of the six WHO regions, and we talked about fair processes for naming those people and how to develop activity in the developing world. I suggested transparent processes and when he reiterated WHOs interest in consumer collaboration, I suggested WHO might like to send people to some of the national consumer meetings to introduce WHOs work and direction, he said he would need an invitation, I said I would ask about the 2003 Alternatives.
Then I waited in line for an hour, listening to very inpatient people trying to make travel arrangements, chatted with a woman from Roumania, soothed an angry angry woman from Brazil, and finally, when it was my turn, realized what had taken so long. I had purchased a post-Congress tour. Little was as I anticipated and I had to be instructed on how to get to the collection place, how to tag luggage, etc etc etc ending with how to get from the end of the trip to the airport including train times, instructions, prices.
I decided to sit down and have a snack and mentally regroup when a man wandered by asking if I know where he could get Nancy some herbal tea. He wasnt successful though, sat down, said Nancy was busy signing books, had signed 400 so far, did I know her, he was Nancy Andreassons husband and I should hurry down and buy her autographed book. We chatted for about 20 minutes, he told me much about her career and interest in changing the world and that when NAMI calls she accepts, doesnt charge, she believes so strongly in their work.
I love to watch group processes, see how boards work, so I went along to the WPA General Assembly meeting, but it was open to delegates only, no observers, and or course my curiosity was doubled about what was going on behind those closed doors.
By now it was time to be at the meeting visit for the technical visit I had signed up for to a private hospital in Tokyo. Our group collected, a social worker from Hong Kong, a psychologist and a neurologist from Italy, and an Egyptian psychiatrist, his wife, and their three year old. The guide was a volunteer, he is part of a group that does this kind of thing, and they had been notified just one week before and ask to staff some 20 of the technical visits. We received an description of the hospital and two maps of the public transportation system we would take to get there: 20 minute walk to train station, purchase ticket from machine, train, change, train, change, exit, purchase ticket, train, walk, about a two hour trip, $13 in fares. The hospital had six buildings, treated some general medical, some dementia, had a unit for psychiatric plus medical, some locked wards, some rehab, a unit for people there a very long time because they had no family and no money and thus no where to go in the community. I saw some signs of heavy medication, some tardive symptoms, a few spoke English and we exchanged a few words and on the chronic ward, when they pointed at the group (including me) and said "Doctor" I said, "Not me, patient" and that produced amazement in them, some smiling and handshaking, and disbelief in the young psychiatrist leading the tour. As we wound our way back I wondered who had planned a visit that was this time consuming and I was pleased that I had a chance to ride the subways and walk through a suburban Tokyo neighborhood and get a sense of non-tourist Japan. And the group was very congenial.
The air conditioning here is gentler. It takes effect very quickly and never gets chilly.
I slept through my own alarm and tested the strength of the one in the bed console - it begins with a soft and gentle beep with a space between, then a bit more insistent double beep, triple, faster double, faster triple, and ultimately a continuous ring. Ive set it for tomorrow.
I took a day tour to Mr Fuji. The guides wanted everyone to wait inside and board the busses in an orderly way. The guests were inpatient, wouldnt queue, kept moving outdoors, closer to the side walk, finally surging on board. Japan is a bit smaller than Montana, is 75% mountainous, and has half the population of the US. The density makes people more considerate, for instance the freeways are quiet, no horns since there are people living very nearby. The average commute is one hour. Japanese breakfast is rice, vegetables, pickles, though most now prefer Western ham and eggs. The guide uses a childrens history book and life style illustrations to orient us. At work, the day might start with a morning assembly, singing the company song, and morning exercises. Japan is "a country of agreement." Pay checks are direct deposited. The wife manages; the husband receives an allowance. Mt Fuji is her usual shy self and hides her peak behind clouds. We are given a Western lunch in an elegant peaceful room, high ceilinged, curved, to enhance the lakeside view. We also go to Hakone National Park, ride a ferry and see a sulfur spring and spend time in rush hour congestion on the return.
People assume I am a psychiatrist, no matter what I say. I showed my seat mate my talk in the program ... consumer and psychiatrist ... and he just thought I was the psychiatrist! Well, ... I spoke to a psychiatrist from Alaska, said advocate, he said NAMI, I said no, he said outpatient commitment, I said human rights violation, he said but what if, I said "tough" and he kept wanting to treat. <shrug>
I missed an opportunity. The bus was very late getting back and I forgot all about my invitation to the Presidents Dinner until I finally got back to my room. Its probably just as well; today I am feeling assertive and might have caused some indigestion <smile>.
Hotels hold checked luggage in their lobbies. They throw fishermans netting over each partys bags, tie on a number and give you a receipt. The lobby begins to look like a grotto.
Im having a sense here that psychiatrists, generalizing grossly, are rather fragile, want to be appreciated, want us to be grateful, dont understand the anger and the hate mail and so diagnose it. What I think is that we have to start back at square one, pointing out that we are people, that we want our judgment to prevail not someone elses, ... Because they sincerely believe they are doing good and if we insist too hard that they arent they will not be able to listen at all.
Cemeteries have family tombstones, not individual ones, perhaps two dozen in one crypt.
Kentucky Fried Chicken is the traditional Japanese Christmas dinner.
At a Buddhist shrine there is a large rotating cylinder containing Buddhist sacred texts. If you turn the cylinder a full revolution, you absorb all the knowledge it contains. A Danish tour member is trying to convince the guide, who has told us she is a Shintoist and a Buddhist, that Christianity has all of that and more. She insists that in Buddhism all can become enlightened.
My phone just rang. It was the front desk saying I had an "outside call" and would I accept it. That meant to me long distance from the US, but before I even had time to worry, I heard another Japanese voice asking if I wanted a vegetarian lunch on the tour I had booked! Im doubly surprised, that calls are screened for me, and that lunch is ordered ahead.
Because the economy is so depressed, Japanese psychiatrists were assessed $2000 each to pay for this Congress.
My tour bus seat mate and I were discussing the Japanese attachment to rules and structure. I wanted the guide to change the return route, stop first at the station, then the hotels, and I asked him if he would also ask, thinking if several people did there would be more chance. No, he said, she wont change the route and I dont like to lose so I wont ask. Hmmm.
Japanese hotel check-out time is 10 AM. You may ask for up to four hours more and pay by the hour; more than four hours and you pay for a whole extra day.
Kinkos and the conference center charge $2 for 10 Internet minutes.
There is a 5% sales tax on apparently everything.
About 50 are at a Human Rights meeting to discuss a strategy to deal with China. The WPA already reviews systematic political abuse of psychiatry. A site visit to China is being proposed. Lessons from the site visit to the Soviet Union where people were admitted to a hospital for upsetting the authorities but who are not mentally ill. Prior to a visit some of these people must be identified. (There was a Russian underground who identified and people were glad to come forward.) Then there were interrogatory teams who did half-day clinical assessments, not ever in a hospital (they used a Moscow hotel), acquire records, assess, abstract, transportation was provided for the person and one to accompany and the interpreters were hired by the review team. The charge of the WPA Review Committee is not just political abuse but any abuse of psychiatry. If the Chinese Psychiatric Association is asked to leave the WPA, patients are left unprotected. Caution: dont be a pawn of Falong Gong; they have an anti-psychiatry, Scientology component. Rebut: Lui, Chinese psychiatrist who teaches in the US and is herself a Falong Gong member. If China refuses to allow a visit, the WPA might convene an extraordinary session. However, once a protocol is created, China wont back out. A user from Lithuania made a comment and I after introduced myself. A user from Rumania joined us. And one of the Japanese users was also in the room.
I later read their presentations. It was both heart-warming and discouraging to find us all on the same page, wanting to be treated as whole people enabled to lead quality lives and have choice.
2003 APA meeting will be in San Francisco in May and Human Rights in China will be a prominent theme. Could we piggy-back on that? Surely make of the language about what is happening in China applies in parallel ways in other places
WPA President-Elect is Juan-Enrique Mezzich, USA
The WPA Journal has 20,000 subscribers; there were 2800 at the opening ceremony, Japan created a mental health stamp for the Congress, 6200 were registered from 111 countries, half from overseas. There were 40 pharma funded and organized satellite symposia. As the review continued, a video in the background highlighted images and the speaker noted the themes: biology, stigma, disasters, inclusion of family groups as Congress presenters; GAMIAN Europe has become an affiliate. "Geriatric" section has been renamed "Old Age" section. A five point Yokohama patient rights and treatment declaration was approved.
I purchased the post-congress tour for Nara and Kyoto. We assembled at 7:40 for a 9:20 Shinkasen 2:20 ride to Kyoto. We went by bus to a station outside Yokohama that had been built especially for the bullet trains, and they are as fast and efficient as their reputation (the Kyoto stop was 60 seconds). There are 90 on the tour, three busses of people from many countries.
The Todai-ji Temple, www.todaiji.org , is the worlds largest wooden structure.
Japanese school children have summer homework.
People carry a personal cloth, about the size and texture of a thin US face cloth, folded in quarters, and they dab off the moisture on their faces.
Cremation is required by law.
Green tea is an anti-oxidant.
The wooden floors of the entrance corridors to the Ninomaru Palace that lead to the grand chambers are specially built, with a clamp and nail joint that moves up and down, to squeak and creak when ever they are stepped. It is the early warning system, it sounds like birds chirping, and is thus called the nightingale floor.