Reason to Hope Family Training in Nairobi Kenya 2007. Click here and scroll down.
Kenya/Uganda Cross Border Workshops 2003
REPORT FROM THE KENYA SCHIZOPHRENIA FOUNDATION
A three-day Cross Border Workshop for delegates from the Kenya Schizophrenia Foundation and the Uganda Schizophrenia Fellowship were held in November, 2003. The theme for the sessions was "Barriers to Effective Mental Health Care". The meetings were held in the beautiful premises of the Agricultural finance College, Lang'Ata in Nairobi.
The meeting was sponsored by WFSAD with a grant from the Pfizer Foundation and organized by the Kenya Schizophrenia Foundation.
The Cross-border workshop on mental illness was held at a time when mental illness is increasingly taking the center-stage of health and wholeness. Not one single disease can be said to have more severity in its impact or of higher magnitude than the other.
Participants were drawn from East Africa. Kenya - 19 participants, Uganda - 10, Tanzania - 1 and one WFSAD presenter from India.
1. To spread understanding of the problems which result from mental illnesses.
2. To identify barriers to effective Mental Health Services and explore ways and means of overcoming them.
3. To enhance good working relationship between our organization and others in the region.
4. To enhance the growth of Family Support Groups in the East African region and globally.
5. To encourage people with mental illness, their families and other care givers to help each other and themselves.
6. To enhance effective working partnership among all stakeholders in the delivery of Mental Health Services in the region.
7. To draw up an action plan for future activities focusing on urgent issues as identified at the workshop.
OFFICIAL OPENING REMARKS
Dr. Onyango (Medical Superintendent) Mathare Hospital Kenya, read an opening speech on behalf of the Director of Medical Services. His emphasis was on networking in the region and lauded the efforts made by the Schizophrenia Foundation of Kenya to this effect. He challenged them to be in the forefront in the fight against stigma and discrimination. He observed that the affiliation of the foundation to WFSAD was a very positive thing.
KEY NOTE ADDRESS
Dr. Radhar Shankar (Official Representative of WFSAD)
Her remarks were indeed educative, rich in guidance and very encouraging to the participants in view of their hard task in a region with disease, poverty and lack of necessary amenities. She compared this region with Asia and in particular India where there are a lot of similarities.
She defined and focused on quality mental health care. Social or cultural backgrounds should not be a barrier to receiving proper treatment for their conditions.
She stressed the need for networking within the region and emphasized seeking solutions to cope with denial, stigma, ignorance, as well as defining the roles of trained staff in caring for the mentally ill. She noted that co-opting consumers, families, friends in the management always yields better results.
PRESENTATIONS FROM - KENYA/UGANDA
Dr. Mary Oguna, Mr. Jesse Ng'ang'a, Mr. Charles Muriuki (Kenya) presented a skit/poem with a strong rich message against stigma & discrimination. They were educative, entertaining and humorous.
Rose Nampijja (Uganda) presented an educative poem on " What A Stigma". It also had a clear message to the public, NGOs, governments etc to provide medicine and other necessary amenities to the mentally ill and also to set up good laws and regulations to protect them. These presentations illustrated untapped talents from the consumers.
Various items were exhibited by consumers in general. These exhibitions revealed the potential that can be utilized in their long-term rehabilitation and self-economic support. The items ranged from various works of art e.g. wooden key rings, paintings and drawing, to dressmaking & needlework, knitting, poetry in written form etc. These are talents which need to be exposed and marketed.
Miss Nanfuka Yudaya (Uganda) is a relative of a consumer. She gave a real life experience on caring for a person with manic depression (bipolar disorder). She revealed that her family struggled for too long before they got solace after joining the Schizophrenia Fellowship of Uganda. The family coping and caring techniques also improved tremendously.
Mr. Jessie Ng'ang'a (Kenya) gave a real life experience on struggles the family underwent when their father became ill. The family resources were greatly exploited and they lost all they had. Though they now live in poverty they have learnt a lot in-terms of coping and caring techniques from the SFK.
It is worthy noting here that SFK regards them as a "MODEL FAMILY' since both of Jesse's parents and a sister are staunch members of SFK.
Mrs. Margaret Mawaali (Uganda) narrated how as a mother to a consumer she searched for a cure everywhere even from the traditional medicine-men and subsequently all family resources got exhausted.
A friend referred her to a government health facility and got introduced to Uganda Schizophrenia Fellowship just in time before she committed suicide, as she now believed that her son's illness was witchcraft. All these and other beliefs are now changed. Her son is reportedly doing well and is back into the community.
Dr. Mrs. Mary Oguna-Maina (Kenya) spoke of her real life experience as a person living with a bipolar disorder. Her psychiatrist (Dr. F. Owiti) encouraged her to join the SFK and it was here that she got answers to many of her questions. She is a talented poet and a writer of many poems with various messages addressing stigma, discrimination, coping mechanisms. She regards poems and songs as FOOD FOR THE SOUL. She now heads the SFK (Peer Group)
HISTORICAL BACKGROUND OF SCHIZOPHRENIA FELLOWSHIP IN UGANDA
Rebecca Namnyoga talked about how the movement was started and currently has got 110 members comprised of consumers, mental health workers and friends. Some of their successes include: Creating awareness through workshops, drama, songs, use of print and electronic media and visiting consumers.
MENTAL HEALTH POLICIES/SERVICES IN UGANDA/TANZANIA
By Dr. S. Ndonde - Tanzania (Policies & Services)
Dr. S. Ndyanabangi - Uganda (Policies)
Dr. D. Basangwa - Uganda (Services)
Mental health policies/services were well presented from Uganda/Tanzania. Unfortunately such presenters from the host country, Kenya, did not attend so there was no presentation.
Models of training mental health workers in Uganda/Tanzania were highlighted. Both countries saw a need to bridge the gap between psychiatrists and psychiatric nurses. In Uganda another cadre of personnel known as psychiatric clinical officers is in progress.
SHOULD SERVICES BE DIRECTED TO PATIENTS, FAMILIES OR BOTH?
It was resolved that consumers and families should have services directed to them because families as units initiate health care seeking behavior.
ADVOCACY FOR CHEAPER AND BETTER MEDICATION
Participants were unanimous in their advocacy for better and cheaper medicines. It was noted that 1st generation drugs harbor many side effects though cost effective. Atypical drugs are more effective with less side effects but not affordable to the majority of families.
Family support groups should advocate for the same to be provided at lower costs and also for quality and affordable mental health services.
1ST TRAINING SESSION IN UGANDA
Mr. Emmanuel Mufumba presented on the above. The training was organized by USF and sponsored by Holy Cross Catholic Congregation. The goal was to empower families and individuals caring for persons with mental health problems with caring and coping mechanisms.
THE ROLE OF MENTAL HEALTH WORKERS
By Dr. F. Owiti (SFK) presented a very enlightening topic on the above, which showed that even though resources available are scarce, the few available are under-utilized.
He noted that mental health workers also lack deeper and personal communication with sufferers, relatives and even amongst themselves.
PSYCHOSOCIAL EFFECTS OF SCHIZOPHRENIA
Mr. Thomas Waluguba presented a study done in Uganda. This illustrated that most families care for their loved ones regardless of their mental conditions. Participants were challenged to do more research on all aspects of mental health.
EFFECTS OF DRUG ABUSE ON MENTAL HEALTH
Dr. Okonji (Kenya) presented the topic that illustrated how tobacco, alcohol, bhang, khat, heroin, inhalants, cocaine etc affect the general health of users especially those with mental health problems. It was noted that prevention of the above is difficult due to lack of effective policies to curb their use.
COPING MECHANISMS AND COUNSELLING FOR MENTALLY ILL PATIENTS
Joyce Ndunda (Kenya) stressed the need for proper guidance in cases of mental health problems. She observed that in Africa we are still struggling with the most basic needs with regard to understanding and coping with mental illness. So trained personnel need to work as a team and work towards a multi disciplinary approach to this problem. It is important for us to appreciate that a mental patient is a human being making an effort to communicate his struggles and therefore we must try to reach this humanness as we try to help him have insight into his illness. Without insight, there is no room for counseling.
DOCTOR - PATIENT - FAMILY COMMUNICATION
Mrs. Wairimu Nyoike (SFK Patron) noted that the outcome of the way a health problem is managed depends on the recognition of the contribution of all involved and the success in confidence building. Initially relatives and patients expect that the illness will be tackled immediately and life goes back to normal. They require to be given all relevant information i.e. on investigations necessary, drugs, disease course etc. This information should be standard. The Doctor must understand that the family needs assurance right from the beginning, to be shown the road map for the future, and all the support system available to them.
BENEFITS OF A FAMILY SUPPORT GROUP
Gladys Okoth (Chairman SFK) gave a presentation based on her own experience as a mother of a consumer. Some of the benefits are: giving hope, lessening frustration, giving knowledge, tackling discrimination and stigma. Advocating for quality of life for the affected person also serves as a meeting point for people with similar problems. New members encounter others who prove to be very resourceful and they in turn share together.
Dr. Njenga (Kenya) tackled stigma, discrimination and the way forward. He noted that most governments allocate very limited resources to the mental health budget. Insurance companies discriminate against the mentally ill. The way forward was to:
- Recognize causes
- Work with families and other stakeholders
- Mass education for the understanding of mental illness using opportunities available i.e. electronic and print media etc.
RIGHTS OF THE MENTALLY ILL
Lillian Kanaiya (SFK) observed that human rights are always based on human needs i.e. physiological, safety/security, love and belonging, self-esteem and self-actualization.
The mentally ill are human and require to be treated with understanding and respect. They must be taken seriously when expressing concern over their experiences and these concerns should not be brushed aside. They require information about their illness; need to be honestly told about their diagnosis and treatment and its possible side effects, and should be helped with STRATEGIES for coping.
GROUP FORMING EXPERIENCE
P. Kimari / C. Mutegi (Kenya)
Both are mental health workers who have set up family support groups in their respective areas of work. These are sub-branches of SFK. Their achievements were highlighted and likewise their shortcomings.
Though availability of resources is a crucial factor they have vowed to "Grow together and conquer together". A mother to a consumer from Kirinyaga branch gave a testimony on how she has benefited by being a member of the family support group.
GENERAL COMMENTS ON THE ORGANIZATION OF THE MEETING
Program/Presentations went smoothly. Consumers felt they needed more time for their presentations. Policy planners from Kenya unfortunately did not show up. This issue was discussed and a solution will be looked for. Meals were well organized.
The venue and accommodation arrangement was good since it was a quiet place, though some day-participants feared reaching their destinations late after closing because the venue was far removed from the city center. There was active participation by all participants. We are extremely grateful to WFSAD for its financial assistance and guidance, without which the workshop would not have materialized. We look forward to continued strong collaboration in future.
We appreciate Dr. Radha Shankar's presence and input. She was a motivating force for the workshops. She was very resourceful and answered a lot of our questions.
Participants were taken on a tour to our public national mental health hospital (Mathare Hospital) and thereafter to one privately run hospital (Chiromo Lane Medical Center).
- Presentations, poems and dramas with messages concerning mental health to the public should be encouraged. Use of any other available communication tools i.e. print/electronic media.
- Campaign through mobilization i.e. collecting signatures to address the issues of quality, care for the mentally ill and reduction of cost of drugs.
- Funds/ Sourcing: Members were encouraged to search for funds through writing proposals. Dr. Mary Oguna (Kenya) as a consumer has started writing such proposals and can be approached to assist by other willing groups. USF can do so, to solicit for funds to enable them to complete their building.
- Need for exchange programs within the region was emphasized, to enable sharing of vital information and experiences.
- It was suggested that Dr. F. Owiti (Kenya) talk to fellow psychiatrists to request their active participation during such workshops.
- The Regional Psychiatrists Symposium is encouraged to invite all schizophrenia family support groups in the region in their April 2004 meeting in Arusha, Tanzania. Dr. D. Basangwa/Dr. Mbatia to co-ordinate.
- Hospitals/Mental health workers were challenged to initiate research-based programs on family issues and share their results across the borders.
- It was suggested that family support groups should broaden their membership to include lawyers, politicians, churches, and friends etc.
- Family support groups should broaden their catchments areas to include even the remote areas. These areas have patients who cannot access health care points because of various circumstances.
- An evaluation taken at the close of the workshop showed that the participants were very
satisfied with all aspects of the meeting and would wish to attend any future workshops that might be arranged.
Email contact addresses of major participants:
Thomas Walunguba, Uganda Schizophrenia Fellowship firstname.lastname@example.org
Lilian Kanaiya, Kenya Schizophrenia Foundation (KSF) email@example.com
Scholastica Ndonde, Nursing Professional, Tanzania firstname.lastname@example.org
Dr. Fred Owiti, Medical advisor, KSF email@example.com
Dr. Sheila Ndyanabangi, Uganda Ministry of Health firstname.lastname@example.org