Asia Pacific Advocacy Forum held in Chiang Mai, Thailand
By Jim Crowe, Past President, Chair of the Asian Region WFSAD
This year for the first time saw The Royal Australian and New Zealand College of Psychiatry represented (RANZCP). For some time I have tried to have them join us in our endeavors. Harry Lovelock, RANZCP, Director, Policy Unit and Dr Chee NG, Director of Training joined us in Chiang Mai. It is a first of what I hope will be a growing partnership with the college. I was invited once more to become a member of the Bi- national Committee of Professional and Community Affairs. This is my second time to sit on this influential committee.
I arrived into Chiang Mai about a week prior to the meeting. This gave me time with Dr. Pairat Pruksachatkunakorn, who ha arranged a number of radio and television interviews. This opportunity gave us the ideal situation of being able to talk about the families of the mentally ill both locally and nationally. With support from the Eli Lilly representative I was able to visit some of the hospitals. The hospitals are in good shape, families are invited to be as involved as much as they can. This means that information about the illness can be shared easily with the people. It also means that families meet each other and share the challenges which eventually arise.
I took the time to visit The Mac Cormac Faculty of Nursing, Payap University Chiang Mai, where I met with the Assistant Dean and some of the lecturers. I also visited the Department of Psychology, Faculty of Humanities. There I met the Dean, Somchai Teaukul. A very with it person who strongly believes in community interaction. In fact, some of his students are placed out in the community working with families. I wish I had more time with him and to meet with his students.
The meeting itself saw some 45 people attend. Countries represented were, Thailand, Singapore, Hong Kong, Philippines, Korea, Malaysia, China, Taiwan, Australia and New Zealand. This time more than ever the people who attended came mainly from the grassroots or were involved some way in supporting their community. This forum was not for those who are great dispensers of any one medication. This is in itself an important change.
Whilst in Chiang Mai, I heard of a temple outside the city where there were two young monks with schizophrenia. A visit was arranged. The temple is one of possibly hundreds in the Northern part of Thailand. There we met the chief monk who then introduced us to one of the young men. We had a beautiful meeting in beautiful surroundings. Whilst talking with the chief monk we began to explore the notion of his temple becoming a place where those in the community affected by a mental illness could come each day.
He felt very comfortable with the idea and mentioned that he had often wondered if such a thing was possible. He would like to see the temple become the focus point for the people so affected. I should mention here that he is also the Deputy Chief Monk for Northern Thailand. I issued him with an invitation to the forum which he accepted and attended both days. This is a first as it has not happened before. I was told that such a move could only come from someone outside, with the support of the community. I believe there is real potential here. The Temples are much used by the community and could be ideal places for families to visit, both for support and for a place for their family member each day. I intend to follow this up.
To hear of the events in Malaysia and their progress over the last year was indeed stimulating. Currently the group continues to grow at such a rate that we foresee the formation of the National Family Support Group by end of this year 2005. The group will use it as a platform to lobby the Malaysia Government to find and seek support either directly or indirectly. This group has made tremendous progress since I first began to work alongside them.
Marissa de Guzman was the only person from the Philippines. I had asked that this time we have people who were active in their communities and not just psychiatrists who prescribed certain medications. Overall this request was adhered to for the first time. Marissa is quite a person. She has dedicated her life to the work she has done. In the past you will have read of her work in Bulacan and how successful that continues to be. It is her intention to bring together, towards the end of this year, the first national gathering of families with the view of forming a National Family Organisation. Marissa was a tremendous asset to our meeting.
As is usual, at the end of each meeting the countries have to present what they hope to achieve during the coming year. Some are already well underway in what they hope to do, others beginning and looking for support. This opened the way for me to ask a person from each country to become part of a steering group which would then begin to plan and look at the needs of this region. This would also include research. At this point I believe there will be funding to bring the group together again in 2006. As to the steering group I am very hopeful that there will be funding for a meeting sometime this year or at least before the main group meets next year. At long last the vision of Asia having its own voice and speaking out for itself is beginning to become a reality.
I have no wish to add many more words to all this. Those who have since sent information to me I shall forward to you. It is now my hope to begin to look at the Asian countries that are not yet present. India, Sri Lanka, Laos, Cambodia, Vietnam, Indonesia and Brunei. WE must not forget the Pacific Islands, they have great needs and tend to be overlooked. My hope is that it will happen that they will become part of this venture.
I wish to say very sincere thanks for the work Pairat did towards making the forum the success it was. He was our host. A very big thanks also to Colonel Charat Lim-Arun and his wife. They met me at the airport and became my host and drivers for so much of my visit. I cannot forget Mrs. Naree Thongsawat who provided me with one of her guest houses to stay in. They are part of her estate and very secure from outside intrusion. Her staff looked after me too well. Her late husband was deputy Prime Minister of Thailand. She is like Pairat, a family member.
Just briefly. On my way back I stopped over in Singapore. This was to enable me to support families and mental health supporters. I met with 45 new family members at Sally Thios organisation. This was the first time that the families had actually met together as a group. The evening started with a meal and then into the meeting. It was mainly about what is mental illness and its effects on family and then onto family empowerment it was a great evening with plenty of questions.
I am aware that there will be some things left out but I have tried to cover most of what happened surrounding the forum. Should you have any questions please do not hesitate to contact me.
Chairman Asian Region
Asia Outreach 99
This document gives an overview of the 1999 visit by Dr. Margaret Leggatt, President, and Mr. Jim Crowe, President-Elect of the World Fellowship for Schizophrenia and Allied Disorders, to parts of China, Korea, Japan and the Philippines. This visit was part of the WFSAD's program of Mutual Exchange and Outreach to promote the development and maintenance of family self-help support organizations. We would welcome your ideas as to how we might further develop some of these initiatives in the Asian region.
Dr. Margaret Leggatt
Mr. Jim Crowe
To join with families, consumers, and mental health professionals in the promotion of best practice in mental health service delivery, based on evidence from reputable research.
When given information, support and guidance, family and consumer organizations can make an impact on both policy and service provision in the following ways:
- the creation of local/regional informal caregiver and patient networks. This gives consumers and their family members a better understanding of their illness. This enables them to advocate locally for the newer and most effective medications and mental health services
- the development of local/regional groups into a strong national organization. A national organization can advocate and lobby at national government level for the best available medications and mental health services.
These organizations see the following projects as high priorities:
- Community education and awareness of mental illness
- Training families to work with other families
- Development of rehabilitation support services
- Implementation of appropriate community-based mental health care
- Development of productive working relationships with professionals
Margaret Leggatt (President) and Jim Crowe (President-elect) of the World Fellowship for Schizophrenia and Allied Disorders, planned visits to our members and other groups who were not yet members, in China, Korea, Japan, the Philippines during the early months of 1999.
We carried out the following action plan:
Notification to our members, pharmaceutical companies, and the Western Pacific Region of the World Health organization of our intended visit, asking for meetings with family members and mental health professionals, visits to mental hospitals, participation in interactive workshops with families, consumers, and mental health professionals. These interactive workshops would define local needs and issues. The WFSAD could then help in the development of, for example:
- methods for educating and training families (and consumers)
- strategies for the planning of local mental health services
- strategies for dealing with stigma and discrimination of the mentally ill
- strategies for planning partnerships with relevant authorities
- notification to Janssen-Cilag and Eli-Lilly representatives in the cities that we wished to visit, in the hope that these representatives would support and help us.
Proposed Itinerary for May, 1999
- Beijing - May 1st - 8th
- Seoul - May 9th - 12th
- Tokyo/Osaka - May 13th - 19th
- Shanghai - May 20th - 22nd
- Manila - May 23rd - 27th
- Hong Kong - May 28th - 29th.
A. Report from China
1. Dinner with Professors of Psychiatry from Universities in Beijing (including Professor Shen Yucan who headed the organization of the Beijing 1997 conference). This dinner was in honour of our visit, and gave us the feeling that the WFSAD was recognized as an important organization by senior mental health personnel in Beijing.
2. Three educational sessions with the Mental Health Support Team at Anding Mental Hospital. Topics discussed:
- methods of early intervention
- the need for a blend of hospital and community-based services
- methods for educating and training families. Emphasis was given to the "Family Guidelines" as set out by W.R. McFarlane in his work with multiple family groups.
- the Clubhouse model of psychosocial rehabilitation
Outcomes from these educational sessions:
- staff are planning to find a house in the community and a 'secondhand car' to commence a day centre with psychosocial rehabilitation principles.
- Dr. Huang Qing will translate the Family Guidelines into Chinese for publication in their psychosocial rehabilitation newsletter. She is also interested in receiving more information about the optimal treatment project of Ian Falloon. She read about this in the WFSAD newsletter.
- early intervention programmes, and information about stigma reduction from New Zealand was left for people in Beijing to use whatever they found that was useful to them.
- Michael Swain from the New Zealand embassy attended one of the sessions and promised to negotiate with the New Zealand ambassador to provide up to $10,000 NZ for a combined project between Anding hospital and the Beijing Family Association of the Mentally Ill, to establish an education project for families, patients and the community.
- the staff will give consideration to how mentally ill people (who have 'recovered') and their family members, can explain to community health centres what mental illness is all about, and what mentally ill people can achieve. This is the beginning of one campaign to eliminate stigma from services that mentally ill people need to access.
3. Attendance at the opening of the counselling room for "The Beijing Families of the Mentally Ill" -- part of the Beijing Disabled Persons' Federation. This counselling room was made possible from the Eli-Lilly grant negotiated by our WFSAD executive director. The grant provided:
- educational sessions for families, where doctors and lawyers were invited to speak
- a public concert put on by patients from the mental hospital, which was exceptionally well-received and seen as a huge step forward in the fight against stigma. Patients had never done anything in public before.
- a 'stigma' survey. Some families surveyed their members about experiences of stigma, and the results have been sent to the Disabled Persons' Federation
- a project has been started to enable families who are poor, to receive medication.
The opening concluded with one and a half hours of questions from, and answers to, family members by Dr. Leggatt/Mr. Crowe, interpreted by Dr. Michael Phillips.
Recommendations for the Beijing Family Association of the Mentally Ill:
- they wish to join the WFSAD (but fees would need to be waived fees as they have no money)
- Janssen, or one of the Embassies provide a secondhand computer, so that they can commence a Chinese network newsletter and develop pamphlets
- find funding for pamphlets in Chinese
- find ongoing funding for future activities at the counselling centre.
- Dr. Phillips to consider appropriate families to do family training in 2000
- WFSAD to keep regular contact to provide this Association with appropriate updated materials
- WFSAD will participate in an advisory group to the Anding Hospital Family Project, and to the Beijing Family Association of the Mentally Ill.
4. Visit to Daixing County (southeastern suburb of Beijing):
These mental health services are a model of achievement in a rural area.
Drug detoxification unit.
Patients are given 'cold-turkey' treatment in three weeks and then discharged. Relapse rates are high.
Male and female hospital wards.
This complex was developed for people with mental illness who were seen to be capable of rehabilitation. Follow-up was with a good community team practicing case management. This was making a great difference to the ability of patients to receive medication and to live normal lives in this poor rural community.
A very impressive farm rehabilitation centre aimed at returning patients to work back in their rural communities -- an excellent model for any rural community. Families in these communities were automatically part of the whole mental health treatment and care process. This initiative seemed to come from an enterprising young psychiatrist who was the psychiatrist in charge of this community. This was a model that would do well in many parts of Asia, as well as other agrarian communities in temperate climates.
5. Question and Answer Session with the Anding 'Hotline' Doctors.
This was a telephone counselling service sponsored by Janssen. Psychiatrists are rostered to do four hours once a fortnight on this telephone advisory service. The doctors give their time free to carry out this programme. The doctors reported that the callers wanted to:
- know about the best way to treat schizophrenia
- learn about medication
- be given advice about diagnosis; they wanted confirmation of the diagnosis
- be given advice about situations where something seemed to be wrong, but they did not know what to do
Major problems for the doctors were:
- giving advice to people who were not their responsibility
- not knowing how to handle situations where patients were threatening suicide.
From extensive experience of telephone counselling, Dr. Leggatt and Mr. Crowe spent two hours making suggestions, and giving support.
6. Meeting with senior psychiatrists - Beijing Community Services Centre.
These psychiatrists were practicing a 'prevention of relapse' model by following patients after discharge from hospital out into the community. This is being undertaken as a research project in 8 districts in Beijing. The problems that these psychiatrists were encountering were:
- lack of understanding about mental illness in the community
- lack of government understanding
- shortage of qualified psychiatrists
- no effective ways to increase patients' ability to do more work
Stigma reduction programmes were suggested. While effort is given to World Mental Health Day, much more local community education needs to be developed.
7. Question and answer session with approximately 30 family members of the Anding Hospital Family Group. Question and answer session at the Beijing University Hospital, at an afternoon seminar for Family Members (sponsored by Janssen)
The latter seminar was attended by over 250 people. These sessions discussed:
- how to overcome stigma
- what to do about marriage when one of the partners had a mental illness
- what to do about the lack of day activity centres
- what could be done about the high cost of medication
- concerns about the time needed for people to recover
At the conclusion of our itinerary, a letter was written to the Chinese Minister of Health in Beijing to commend the farm rehabilitation project, the 'hotline' doctors, the work of Professor Weng Yongzhen and his team at Anding hospital, and the capacity of the Beijing Family Association to provide a valuable mental health service if it is given further support.
1. Shanghai Mental Health Centre.
The name was changed from psychiatric hospital to mental health centre in 1995, as the latter title was seen to be less stigmatizing.
This is a three tier level of mental health service delivery associated with 20 district hospitals and involving 8000 patients. It is supported by the municipality, the district and the neighbourhood, and was a World Health organization Collaborating Centre in 1982 for research and training in mental health.
It consists of a main hospital, a research institute and a branch hospital.
Visits were made to the main hospital and the branch hospital, both old-style institutional buildings , but with obvious efforts being made to introduce psychosocial rehabilitation activities. Patients were kept well-occupied in hospital.
A new young peoples' ward where families could stay with their relative (provided they could afford it) was a highlight.
The psychiatrists who control the centre, talk of having moved from a medical to a biopsychosocial model. Another aspect of their destigmatization emphasis was to involve people with minor psychological problems, so that mental illness was not seen as only severe psychosis.
The branch hospital built in 1934, caters for chronic schizophrenia and people with Alzheimer's disease. The rehabilitation emphasis is for 'functional cure' of patients, so that they can return to their families. These people have been institutionalized for a long time and families may not want their relative back home. The hospital staff reclines this problem, and are beginning to research the families' needs.
2. The Psychological Counselling Centre
This was a massive new building for the delivery of a wide variety of counselling therapies. Recognition was being given to the fact that people might need psychological counselling for a variety of problems.
3. The Shanghai 'Hotline' Doctors
This was a similar program to Beijing. Doctors give four hours of volunteer time per fortnight, and are trained by professors from several Universities who specialize in psychological counselling. They take 22 to 30 calls per night.
They deal with a very wide range of problems, including family members of psychotic patients who ask about how to help their relatives recover, side effects of medication and problems when patients relapse.
4. Psychosocial Rehabilitation Assoc. - Ni Ling, wife of Prof. Yan Wenwei
- visit to a snack bar, florist and hairdresser.- small family businesses being used as employment for a few recovering patients.
- visit to a computer training centre, a lecture to families, and a patient and family member discussion support group were three facets of the psychosocial rehabilitation association programs organized by Ni Ling. All programs were highly praised by the participants for helping them to overcome the stigma and isolation that they had experienced. The major problems raised were stigma, the use of E.C.T. for the treatment of schizophrenia, and the fear of what will happen when families can no longer care for their mentally ill relative because of old age.
While the psychosocial rehabilitation association programs were obviously providing good services, the idea of a family support organization as we know it, was not in evidence. We were left with a distinct impression that what happens in China is tightly controlled by professionals, who are psychiatrists. (The Beijing Family Association is therefore a major innovation, and it will be interesting to see if changes occur with further development of this family organization. )
5. Dinner with the Consul-General for New Zealand
Professors Yan Heqin, Liwei Wang, and Ni Ling, and two Janssen representatives were invited to lunch with Ms. Clare Fearnley, the consul-general for New Zealand. This is to be the beginning of the development of useful support from interaction with Shanghai and Dunedin.
The consul-general (herself a psychologist) showed knowledge and interest in the mental health area, and is likely to be very helpful in future developments between WFSAD and mental health services in Shanghai.
6. Program for Shanghai World Schizophrenia Fellowship meeting in the Hall of Sciences (organized and sponsored by Janssen)
This was a three hour seminar attended by 350 family members and patients. We spoke on the work of the WFSAD and the needs of families.
We invited a family member and two patients to sit on the elevated stage with us. This was a symbolic gesture of partnership between professionals, family members and patients, as well as an indication of sharing experiences between different countries.
In all meetings with Chinese mental health staff and families, we were careful to emphasize our recognition of cultural, population, and economic variation. We stressed that they adapt whatever we talked about, to suit their circumstances.
1. Lecture to the Schizophrenia Research Group at Kwai Chung hospital comprising senior psychiatrists from major mental hospitals, Prof. Veronica Pearson (social work) and Paul Lam (occupational therapy), plus a family member from the local family support group, and representatives from Janssen. We presented the work of the WFSAD, then talked about the multiple family group intervention program as developed by Prof. McFarlane in the U.S.
Working with families in groups could be a cost-effective method of family work in China, particularly when doctors are coping with caseloads of 1000 patients per week.
We spoke on early intervention, which again is a cost-effective measure that should be of great benefit in Asian countries. Discussion revealed that these doctors thought the whole concept of 'confidentiality' was very strange, as was the idea that families could even be excluded from being involved in the planning of treatment and care for their mentally ill relatives.
2. Consultation with Prof. Pearson and Dr. Eric Chen, both at the University of Hong Kong; both are interested in programmes for families. Again, the huge problem of the lack of availability of medications, let alone the more expensive atypical antipsychotics, is the number one obstacle to the further development of community-based mental health services in Hong Kong. Families at the moment are too afraid to speak out about anything to do with mental illness, let alone to ask for medications to be made available at a price at least that people could afford. (Professor Pearson has written a book on Mental Health Care in China).
These contacts and issues will need to be followed up in further visits to Asia.
3. Visit to the Hong Kong Family Association
At this meeting, it was stressed that mental health professional workers need to join collaboratively with families in the treatment and care of the mentally ill. In this way, the power of families can be developed and everyone will benefit. The meeting was attended and organized mainly by social workers, so they were given a powerful message that perhaps they could also be instrumental in making this happen.
B. Report from Korea
Seoul - accompanied by Mr. Jun, Founder and President Korean Family Mental Health Association.
1. Breakfast with 3 Professors of Psychiatric Nursing.
These nurses have been involved with a United Nations Development Project (UNDP) of community mental health service development. They have worked very closely with the Family Association, and are obviously a powerful force for change in mental health services in Korea.
2. Visit to Korean Mental Health Family Association
There are 5000 members in the Seoul area and another 5000 in other parts of Korea. They are divided up into 16 sub-units (chapters), and all but one belong to the National Family Association.
Generally, it is the middle class people who join. The poorer people will not even take the newsletter, because they have nothing to give in return. Koreans are very strong on receiving meaning an obligation to give something in return. So poorer families are not even receiving the benefit of 'free' information.
Mental Health Day was started 20 years ago by doctors, but many more activities are undertaken now since the families became involved.
Issues discussed through the Janssen interpreter were:
- the deeply entrenched stigma. Families have not dared to go public yet.
- how should governments and the community be educated
- funding issues. Doctors are in control of hospital beds. Subsidies to hospitals by Government are very low, so there is the incentive to keep beds at full occupancy.
- patients are discharged to the community, where they have to pay for their medication. Even if families can afford this, it is a huge financial burden. They are discharged with no planning. With difficult access to medication and no community services, relapse rates are excessively high.
It is the belief of the Family Association that the money for hospitals should go to support the families and patients in the community.
3. Visit to Taiwha Fountain House Clubhouse.
This was a typical and very good clubhouse based strictly on Fountain House principles. We were to discover later on that some families were very critical because there were excision criteria for admission, i.e. it tended to admit only those people who have a capacity to succeed, that is, to get a job; there were age limits; people had to have a psychiatric referral. Family support was an integral part of this Clubhouse programme.
4. Visit to Seoul National Mental Hospital
This is their showcase hospital, but only 3 out of about 15 wards are open wards. All patients wear striped pajamas. Some younger doctors are doing a valiant job developing activities of daily living out of old style occupational therapy departments, but there was no indication of the need to have these activities outside the hospital.
5. Question and Answer Dinner with Family Association Committee of Management.
This was a lively discussion around the usual issues -- lack of choice and expense of medication, how to relieve family stress, no community services, very long stays in hospital, stigma.
6. Visit to Su-won Mental Health Centre - one of 20 in the province of Kyung-Ke, set up because of new sections in the Mental Health Act which state that such centres have to be developed. Again, staff spoke about stigma and inadequate finances being their major problems. Families with relatives at the centre, are closely affiliated with the Family Association. But again, families who can afford it, have to pay for medication once the person is discharged from hospital. This is a huge financial strain.
7. Visit to Professor Ho Young Lee, Associate Professor Young Moon Lee - two excellent psychiatrists at the Aijou University Hospital. They are attempting to implement Norman Sartorius's stigma campaign, but have had to modify it to suit different cultural norms. These two psychiatrists are very keen to bring about psychosocial community development, and strongly support the Family Association.
8. The Korean Family Mental Health Association Conference (sponsored by Janssen) This was attended by 350 family members. We talked about the work of WFSAD and stigma reduction. Two more talks by psychiatrists followed on stigma and its damaging effects, then a very good question and answer session. The mood of the meeting changed remarkably from one of quiet negativity to a willingness to be outwardly more vocal about mental illness. In the evening at the final dinner, the families said our presence had changed their minds. They were no longer going to hide mental illness, or to be ashamed. They were ready to 'go public' and to use the media.
C. Report from Japan
Host - Kazuyo Nakai of Zenkaren (Family Association) May 14 - May 19, 1999
1. Visits to 4 community psychosocial rehabilitation centres in one municipality in Tokyo. All these centres started voluntarily with strong input from members of Zenkaren. The philosophies were consistent with the principles of psychosocial rehabilitation (for example, social skills training, communication skills development, living skills), even though these centres were often referred to as sheltered workshops. All centres had an emphasis on work training with a view to future employment. Most members at the centres lived with their families. A few were living in independent accommodation, supported by staff at the centres.
An interesting cake and biscuit making business attached to a coffee shop and tea room was used as work training for mentally ill persons. This was a highlight.
- often a shortage of space; space of course is a scarce commodity in Japan.
- not enough subsidies for patients/members
- lack of manpower, so programs were necessarily limited.
- there is beginning to be shorter time in inpatient care; day centres are being developed within the hospitals. Day centres in the community are funded by the municipality. Doctors are then not in control of the finances. The new Mental Health Act should help in the transition from hospital-based services to the community because it states that these community services are to be provided.
- no access to the newer atypical antipsychotics. Haloperidol and chlorpromazine are still the major medications.
- members described problems associated with stigma. Their friends desert them. Families tend also not to understand their illness. There are difficulties getting employment if you mention that you have a mental illness.
- staff at the centres, although qualified professionals, felt that they needed extra training in how to support the mentally ill living in community settings.
Contributions from WFSAD:
- refer families to Zenkaren. (Members said they did not know of Zenkaren)
- invite families to visit the day centres, and to talk with staff and other members. Often families will learn about the illness from talking with members who are not part of their own family.
- invite employers to visit the centre, and to learn about mental illness.
This understanding might lead to employers considering giving a job to a mentally ill recovered person.
2. The First International Symposium on Community Mental Health
Attendees - medical students and psychiatric trainees. Our lectures were on 'Working with Families in the Community' and the 'Work of the World Fellowship for Schizophrenia.'
Contribution of the WFSAD. We emphasized:
- the need for psychiatrists to be trained to work with families, particularly in the community
- the importance of joining with families as equal partners in care
- the need to understand the knowledge families gain through experience
- learning about, and supporting the family organization, Zenkaren
- recognition of the very important role family organizations can play in the fight against stigma, and the ability to force change
- the value of training some family members to train other families as a cost-effective mental health service, particularly in countries where there are very few mental health professionals
- distribution to the students of the Principles of Working with Families.
3. Visit to clubhouse-type facility called Support for the Mentally Ill in the Community. This was a particularly well-equipped psychosocial rehabilitation facility with an emphasis on work training through a business where cooking, assembling, and delivering Japanese lunch boxes was being carried out by members. Unlike many psychosocial centres, this one makes a point of including and supporting families and their needs, at the same time as families are encouraged not to interfere. Families are involved in case conferences; the centre blends the needs of families with the needs of the members.
4. Meeting with Zenkaren committee members. We learnt that one of Zenkaren's main future objectives was to review, amend and/or create appropriate legislation for mentally ill persons and their families. A lawyer, Mr. Yoshikazu Ikehara, will visit Australia and new Zealand in November 1999, to examine relevant legislation - particularly mental health acts, guardianship laws, and criminal proceedings for people who commit crimes while mentally ill but not technically insane.
5. Zenkaren conference at Kitsure-Gawa village in a hotel built by Zenkaren.
It is an ordinary hotel but has a rehabilitation facility for persons with mental illness who want to be educated and trained in hotel service industries. The conference wanted to hear of the work of the WFSAD, and to have our input into the following questions:
- How to make family groups more active
- How to increase the members of a family group
- How to support family members in a clinic, how should professionals run family groups
- How to work together with professionals in the local authorities
- What do family groups do in other countries
Contribution from WFSAD:
- the need to educate professionals about self-help groups and their functions, so that professionals will automatically refer families to family organizations
- the principles behind self-help
- methods of stigma reduction through publicity campaigns, to bring mental illness out into the open so that more families will feel less ashamed about joining/belonging to groups; pamphlet distribution; radio announcements, newspaper advertisements
- the need to develop professional and family partnerships
- planning for the future
This was a lively and interesting conference. Zenkaren is a very advanced family organization, with the growing problem of older families being tired, but with few new families understanding the struggle that has already been undergone to achieve their success to date. This conference believed that the self-help concept had to be vigorously revived.
1. Visits to a patient support centre (with a committee comprising government people, family members and patients) 2 prevocational workshops and supported accommodation. These centres were started by Zenkaren families who have worked incredibly hard in their development, but who are now running out of energy. There is constant concern about how the paper-making workshop which was excellent, will be able to continue as the Osaka prefecture (municipality) is going broke. Families are involved in fundraising for the centres and workshops. Again, a very good relationship with the patients' families was apparent, with families being contacted to verify the patients accounts if the workers felt that illness could be interfering with the patient's grasp of reality. Concerns for the future were very great. This meant that Governments needed to be educated about the vital role played by these excellent community services.
There were several stories in our meetings about the price of medication, the authority of doctors, and the fact that patients did not like to complain about their treatment, for fear of reprisal from doctors. Doctors are very authoritarian. There was great concern about the cutbacks in social welfare in Japan.
2. Reception with the Presidents of all the family groups in Osaka. We spoke about the goals of the WFSAD, and our plans for Asian countries. There was great enthusiasm for ongoing relationships between our organizations.
D. Report from Manila
Philippines - May 24 - May 26, 1999
While family support is deemed to be very necessary by the psychiatrists that we met, the idea of an independent family support organization had not been considered, nor had anyone any idea about what family organizations can achieve. There were certainly no initiatives from family members themselves. If there is one thing that is very obvious in Asian countries, it is the overwhelming dependence on psychiatrists to do everything because they are seen as the only ones who know about psychiatric conditions - and they are in short supply.
1. Visit to Dr. Deva
Dr. Deva had alerted psychiatrists, the mental health department, and the only two non-government mental health organizations - the Philippines Psychiatric Association and the Philippines Mental Health Association, of our visit. This proved to be the first time that many of them had met each other at some of the functions that were arranged for us, in itself a very positive thing for mental health in Manila. The visit to Dr. Deva became a good discussion around several topics:
- the situation in the 37 countries of the Western Pacific region of WHO
- advice on which countries to visit next, e.g. South Vietnam and Cambodia have enthusiastic psychiatrists keen to change mental health services.
- Malaysia was the most advanced in community psychiatry. We should focus on Indonesia. We have contacts for these countries.
Dr. Deva saw our visit as very timely. He himself accompanied us on two occasions - the visit to the family care programme and the press conference.
2. Visit to the National Mental Health Center - the main psychiatric hospital for the Philippines, covering 47 hectares of land and a bed capacity of two thousand plus. People are sent here from all over the Philippines, some families having to find the money to pay for airline fares - money which they can ill afford, and which appears to be found on occasions from other villagers. We asked the Director of the hospital if we could look at the best and the worst wards.
The best ward was the acute admission ward, where patients were subjected to rapid neuroleptization over three days, accompanied by ECT if the limited medications had not taken effect within 12 hours. Patients were shackled to their beds during this process. They were discharged after a maximum of 14 days without ongoing medication unless they could afford it. Each patient had one family member living with him/her during their hospital stay; education programs for families were given in the ward; families also acted as observers for the staff, who were in short supply on the ward. It was dormitory type accommodation as well, but this had the advantage of family members being able to talk with each other during this archaic treatment process.
The worst ward, the forensic ward consisted of two rooms each with 20 to 30 handsome young Filipino men herded in crowded conditions with nothing but mats on the floor; they were not allowed out of this room. These young men had been charged by their families with a crime, and sent to jail by the courts from whence they were sent to this hospital. The doctors had to abide by the court decisions, and after a short period of treatment, the men were returned to jail. We learned that the families were really forced into this process, because this was the only way that they could obtain help for unmedicated relatives of whom they had obviously become very fearful. This awful system reinforces every stereotype of dangerous mentally ill people, and families who only want 'to put their relatives away.'
This hospital takes a disproportionate amount of the mental health budget. The relapse rate is exceptionally high, so the system is inefficient and ineffective.
3. Visit to the East Avenue Medical Centre. The social worker here has started a family group where the local Rotary club helped find funds to provide medications, but because the medication issue is ongoing, it was unlikely that Rotary would continue its support. She had also tried to get families to develop small businesses to pay for medication, but this had not been very successful. We shall develop further contact with this person, as she has started something very valuable and is in need of assistance, particularly in the form of information and ideas.
4. Meeting with psychiatrists of the Philippines Psychiatric Association - the professional psychiatric body. The aims of this association have been to professionalize psychiatry to give it credibility. Secondly, they have started to use the media for information to the general public to change the stigma attached to psychiatrists. They are also keen to try and change the attitude of many people who come to them, that 'just talking' to patients is worth paying for. Doctors traditionally 'do something to' patients, not just talk to them.
5. Lecture to the psychiatric staff, interns, government mental health representatives, a representative from the Philippines Association for Mental Health, and reps. from Novartis and Janssen at the Philippines General Hospital. This hospital has a psychiatric ward, which is apparently the only open ward in the Philippines. We spoke about the work of the WFSAD, particularly the Families as Partners in Care Program. Family care and support was seen as vital, but there were many problems, not the least of which was the lack of psychiatrists to do the work, the disinterest of families, the problem of starting something and not being able to continue. We presented ideas about training families in the idea of self-help, and in starting to see families and patients as equal partners so that they were trained in becoming less reliant on professionals as their confidence in their own abilities to manage increased. This was described as a very revolutionary idea. The doctors wanted very much to have ongoing contact with us to see how this could be made to happen.
6. Visit to the Calumpit Family Care Program, province of Bulacan.
This project was a family education programme in a rural area outside Manila started by a psychiatrist, Dr. Ignacio, and further developed by psychiatrist, Dr. Marissa E. De Guzman, M D. We were told by the families what a difference this programme had made to their lives, because they could see that with medication and education and support that their relatives could become quite well again and be more active in their village community and at home. They had struggled very hard to find money for the medication - there were stories of community efforts to buy the medication. Nevertheless, this was a huge struggle. The medication took a quarter of the family budget.
We are convinced (along with Dr. Deva) that one of our major tasks, is to find some way that medication is made more easily available.
Dr. Deva discussed with us the possibility that professionals and activists in mental health to the region be urged to share their expertise with mental health associations and family groups or other mental health professionals, as well as to visit centres to see for themselves at first hand developments in mental health. Professionals in mental health from Europe or Australia who are passing through Asia on long journeys can stop over ,usually at little expense, and enjoy the hospitality and fellowship of other colleagues in the region.
Another aspect of the programme described above was the training of volunteer health workers to help the relatives of the mentally ill to come to the family care program. At first, these volunteers had been frightened of having to take on this role, but they now said they were frightened no longer, and were enjoying this new responsibility. This was an excellent example of finding resources that were not costing governments any money. It was our belief that this model was one that needed replication throughout the rural areas of the Philippines. Dr. Deva made the recommendation that psychiatric trainees should have as part of their training, responsibility for starting family care programmes in other rural areas. We shall keep in touch with Dr. de Guzman, who was obviously very thrilled by the interest in what she had achieved.
7. Press Conference. Janssen had arranged a meeting with members of the Press. We were asked the usual questions, but one lady said she had a relative with schizophrenia and became very interested in what we had to say about the family care programme. She plans to visit the family care programme, and will meet with the doctors at the Philippines General Hospital prior to writing an article in her famous column. This was considered a real breakthrough, and it was apparent also, that for this lady, the idea of not being ashamed of her relative and not keeping the illness hidden, were quite radical notions.
We suggested to the Janssen representatives, that in our short time in the Philippines, we had met people who could be instrumental in starting a more formal family support organization that would find ways to help the already existing groups that had been started by professionals. The pharmaceutical representative with a sister, the journalist, and the Filipino doctor who has a brother with schizophrenia , were the people with some status and resources who could get things moving. We will continue to support and encourage these people.
Some other effects of our Asian
mutual exchange and outreach were:
1. The development of a mutually satisfying relationship with pharmaceutical companies, primarily Janssen.
The Asian representatives of Janssen worked very hard to help us in every way possible. It was evident that what they were seeing and learning from us and from others in the mental health services and the family groups, from our talks, lectures and discussions, gave them a more comprehensive understanding of mental illness in their respective countries. We believe that the WFSAD should consider how to utilize our 'teaching role' for further development between ourselves and the pharmaceutical companies.
2. A proactive approach to Asian mental health services, family organizations and support groups.
When we alerted various organizations, family groups in China, Korea, Japan and the Philippines, that we were coming, and we gave specific dates, it was amazing just how we were 'swamped' with arrangements.
Dr. Deva said that we should never underestimate the value of being seen to be interested enough to 'invite' ourselves to a country, and to stay for at least a few days longer than the usual invited speaker who flies in, gives an hour lecture, charges a lot of money and leaves. The fact that it became known that we were not being paid, and that we were interested enough to
stay for a few days, means that our ongoing contacts with these countries is probably well assured.
3. Stimulation of local organizations to meet with each other.
- local mental health organizations met with each other, often for the first time. (This was particularly so in the Philippines).
- our visit roused people into a range of activities that would not have otherwise occurred. Notification of our visit aroused people into the organization of seminars with the theme of stigma reduction being prominent. This was because they were very anxious to see if and how other countries had, or were tackling the problem.
While the emphasis of visits is to facilitate the development and ongoing maintenance of family organizations through mutual sharing of information and ideas, a range of related activities are set in motion. For example, we were able to suggest many ideas for information about legal problems, training of mental health professionals, strategies to influence governments and so on.
4. The break in routines for staff allowed them time for discussions (and also some fun) about issues which they seem not to have time to discuss during their normal work routines.