ESAU S ANNUAL REPORT 2007

Transcription

1 ESAU S ANNUAL REPORT 2007 Delegates at the general assembly held in July at Exotic Inn, Bwaise. Plot 3 Ntinda 2 Road, P.O. Box Wandegeya Kampala Tel: esauganda@yahoo.com. Website:

2 MESSAGE FROM THE NATIONAL DIRECTOR OF ESAU The ESAU continued its struggle to bring epilepsy in Uganda out of the shadows in the past year. ESAU s activities were mostly geared towards creating a better understanding of epilepsy and those who live with it. We approach this by targeting PWE themselves and their relatives whom we give information on the condition and counsel them on how to manage their lives while stimulating them to join epilepsy support groups. Such groups provide an opportunity for PWE to share experiences and learn from each other, and they are the local branches of ESAU. In the first half of 2007, ESAU put final touches to a 3 year project that had started in April This project s main objective was a target to open 5 more branches of the association and to increase ESAU s membership to around 6000 active members. Looking back at the past year, one is able to see that this was to a large extent achieved. A general assembly was held to renew the national leadership of the organization and ESAU continued to participate actively in projects/programmes initiated within the disability movement. Within this year, ESAU renewed its corporation with the Danish Epilepsy Association and together presented a 3 year project proposal to Danida. This project called Bringing Epilepsy out of the Shadows Phase II was approved and will run from August 2007 to July The focus of this project will be to engage local governments to highlight the gaps that exist in delivering services to PWE. As usual, ESAU will continue to build the capacity of its membership spread around 139 sub county branches and 20 district branches so as to create a force that can effectively demand for services for PWE. The support from the Danish Epilepsy Association forms the backbone of ESAU s activities, but it is supplemented by contributions from Action on Disability and Development, NUDIPU, and ESAU membership itself. The association is grateful to all its membership, its development partners and associates for the support and cooperation exhibited during 2007 and do hope that this will provide a basis for future collaboration in the struggle to bring epilepsy in Uganda out of the shadows. Augustine Mugarura. 2

3 ESAU is a user governed Association that brings together People with epilepsy their guardians and other community members in order to create a better understanding of epilepsy and to lobby and advocate for better services for people with epilepsy. ESAU is funded by Danish Epilepsy Association and supported in a few activities by Action for Disability and Development and DSI/ NUDIPU and IBE. The Association is now operational in 20 districts in Uganda which include the districts of Mbarara, Jinja, Luweero, Hoima, Mpigi, Masaka, Soroti, Bushenyi, Ntungamo, Kabale, Amuria, Nakaseke, Kumi, Oyam, Katakwi, Kaberamaido, Apac, Arua, Moyo and Adjumani ESAU boosts of a District Executive Committee in each of the 20 Districts which is fully responsible for the day to day operations of the local branches. Local branch executive committees exist at subcounties in each of the local branches guided by the District branch executive committee. ESAU VISION A Ugandan society in which epilepsy is understood and persons with epilepsy (PWE) are treated with dignity so they can exercise their full potential. ESAU MISSION To become the leading organization that empowers people with epilepsy to participate in developmental processes through advocacy, networking, research and documentation. OBJECTIVES To sensitize PWE, their relatives, guardians, health workers and communities about epilepsy To strengthen the knowledge and skills base of teachers, health workers and other professionals to enable them provide effective care and support for PWE To strengthen networking and issue- based advocacy with a view to realizing the rights of PWE To support PWE and their families access better opportunities to improve their livelihoods To strengthen the institutional capacity of the organization, ESAU to remain a lead membership organization for PWE and caregivers ACTIVITES CARRIED OUT IN THE YEAR 2007 Awareness Raising Not much has been done in Uganda about epilepsy due to mainly ignorance of a big percentage of the community in Uganda on issues to do with epilepsy. Thus one of the major aims of the project code named Bringing Epilepsy in Uganda out of the shadows (Phase Two) was to focus on creating awareness as a first step to reducing ignorance and thus stigma associated to 2 mobilization exercises (in April-July and another in September December) were carried out by the Secretariat in the year to sensitize PWE, their relatives/ guardians and the general communities in the local branches where ESAU is operational on epilepsy. This has led to increased inquiries to the secretariat and consultations on issues related with epilepsy. 3

4 Radio Spot messages were aired on all the regional radios in areas where ESAU has branches. At least one talk show was carried out in each of the regional radios (Radio West, Radio Kigezi, Capital Radio, Voice of Teso, Radio Kitara, Radio Simba, Buddu Fm and Radio Pacis in Arua. Brochures in the local languages of Ateso, Luganda, Runyakitara, Lunyoli, Lugubara, Lunyoro, Lusoga, Japathola and English were produced to facilitate the process of awareness raising. 2 sets of posters, 3000 in total in conjunction with Ministry of Health were produced in the same year too. The Programme Officer, Advocacy and lobbying sensitizing students of Kalinabiri.S.S.S on epilepsy A DVOCACY Fighting for the rights of PWE is a hard long struggle that needs to be done firstly by equipping PWE, their parents and guardians with skills in advocacy and lobbying for their rights. This has been a major focus for ESAU. During a branch wide mobilization exercise, branch members were provided with the guidelines on the necessary skills in advocacy and lobbying, for example like being able to identify power centers in the local branches to enable them lobby for their rights, and how to approach the power centers. ESAU organized a media press conference in July at her Ntinda offices. One of the major objectives of the media conference was to provide the media with accurate information on the status of epilepsy in Uganda, to strengthen ESAUs relationship with the media so as to enable a smooth flow of information on epilepsy to the Ugandan community. Present in the conference was the Principal Medical Officer MOH, Dr Sheila Ndynabangi, representatives from a number of media houses in Kampala as well as ESAU staff members. 4

5 A media press conference at ESAU offices in Ntinda A total of 2 newspaper pullouts were released by the Secretariat with one specifically being dedicated to schools in the daily monitor. As a result the number of call ins to the secretariat has increased and personal visits from parents seeking counseling and referrals has increased as well. In 2007 the physical total number of people who came to the Secretariat to seek counseling and referral were in total 50. ESAU participated in the development of an advocacy agenda for NUDIPU for the next five years. At the onset of the project code named Bringing Epilepsy Out The Shadows Phase Two, an Inception phase of the project was carried out with ESAU introducing the project to all the districts she operates in.consultative meetings with district leaders, opinion leaders on how best PWE can be supported by the districts local governments were held in each of the 20 districts. 5

6 A Consultative meeting with District Leaders in Western Uganda ESAU has signed a Memoranda of Understanding with Jinja District Local Governments and is in the process of signing MOUs with the 19 other district local governments for purposes of cooperation for the betterment of service provision to PWE. The MOUs clearly spell out the obligations of the local governments towards PWE and ESAUI hopes to use them as a monitoring tool. Branches ESAU is operational in a total of 20 districts in Uganda. In total the Association boosts of 139 local branches. In the new project ESAU has expanded her administrative operation to 7 new districts of Adjumani, Oyam, Nakaseke, Katakwi, Amuria, Kumi, and Kaberamaido and suspended her operations in the districts of Masindi and Tororo due to failure by the district executives to solve leadership differences. PWE leaders have regularly met to plan for and deliberate on issues concerning the association at district level. In the year 2007, 15 of the all the 20 district branches sent in minutes of their meetings as well as quarterly reports of their activities. ESAU has been able to support branch activities by sending support funding to District branches to enable them cover their operational costs. This initiative has helped in mobilization of PWE, increased awareness raising and thus opening up of new branches in most of these Districts. 6

7 ESAU VOLUNTEERS ESAU activities are largely supported by volunteers who are trained by ESAU and equipped with skills in volunteerism, basic counseling, awareness raising as well as community mobilization and referral of PWE. ESAUs success story can be attributed to the vigilance and hard work of the volunteers. ESAU carried out volunteer supervisory meetings in March- April 2007 in 15 branches and met with all the volunteers trained. High on the agenda was to discuss the challenges and successes met by each volunteer and pave a way forward. At the end of these meetings all volunteers who had not got bicycles previously were facilitated with bicycles to ease their work. HIV/AIDS TRAINING 26 volunteers from Soroti have benefited from training as TOTs in the area of HIV/AIDS/SRH and home based care as well as basic counseling skills in a project cod named Mainstreaming HIV/AIDS/SRH services among PWE in Soroti District, a project funded by NUDIPU HIV/AIDS. ESAU received 11 million shillings from NUDIPU and successfully carried out two workshops. Theses volunteers were equipped with skills, knowledge and attitudes to deal with people who may have epilepsy and HIV/AIDS. Volunteers in Soroti during a training in Home care and Basic counseling at Sofliv Hotel, Soroti 7

8 DRUG BANK INTITIATIVE Uganda s health sector is highly under funded thus PWE cannot access medication on a regular basis. This has led to increased seizures among PWE when medication is not available as well as increased drop out rates of school going children with epilepsy. ESAU came up with a drug bank initiative where PWE can have medication at all times and be able to carry out their day to day activities with ease. ESAU has signed Memoranda s of Understanding with 12 faith based health units in the districts of Ntungamo, Bushenyi, Kumi, Amuria, Soroti, Oyam, Kaberamaido, Mbarara, Katakwi and Apac to provide PWE with medication at a subsidized price. A start up kit was provided by the Secretariat to the faith based health units and members in the branches have supported the initiative by contributing some money to keep the drug bank operational. Initial funding for this project was secured from IBE. ESAU has also been able to support outreach clinincs in the districts of Jinja, Soroti and Mbarara to enable PWE access regular medication. Signing of Memoranda of Understanding with a faith based Health center in Western Uganda 8

9 MEMBERSHIP DEVELOPMENT. ESAU is a membership association for PWE, their relatives and guardians. ESAUs strength lies in the number of members she has. Below is a summary statistics of membership to the Association from the start of the project. A Summary of membership to the association from the onset of the project Year /7 Total membership 1,668 2, Limitations to increased membership to the association have been lack of transparency by a few leaders in the collection of membership fees, poor documentation and recording of members in a few branches and relocation of leaders to other parts of the country without handing over project documents. CAPACITY BUILDING Three regional workshops were held to refresh the capacity of district executive leaders in the area of advocacy and lobbying, leadership, community mobilization, financial management report writing, minute taking and group dynamics. Thus a more ably equipped leadership is in place to mann ESAU activities at the branch level. ESAU carried out a branch wide election of all her local branch and district branch executive members. Thus the Association boosts of a newly elected and able executives. ESAU plans to have training for the district and local branch executive so as to strengthen their leadership capacity. An annual retreat for staff and BOD members as well as an annual review for the project was done in February at Exotic Inn, Bwaise. A total of 34 participants from the 15 branches as well Secretariat staff were in attendance of the meeting. Members deliberated on the achievements and challenges the association had faced and agreed on a way forward to strengthen the association. An Annual General Meeting was held in April 2007 and a new Board was elected to mann the association activities. Members elected included the following: S.No Names Title District Address/ Tel 1. Arinaitwe Deus C/m Bushenyi M. 2. Odongo Andrew Vice C/m Soroti

10 3. Ebong Anthony G/Secretary Apac Nakkidde Juliet Treasurer Luweero Ssabiti Peter Pub Secretary Kabale Andema Ben Comm. member Arua Lukanda Jane Comm. member Jinja Namugenyi Substitute Masaka Gorretti 9. Kebigombe Edith Substitute Ntungamo A few ammendenments were made to the constitution. Staff Development The accountant is currently pursuing a professional course in financial management. The National Director completed a course in management as well. This has better equipped the Secretariat to manage Association activities NETWORKING/DEA VISIT ESAU was honored with a visit from Danish Epilepsy Association. The Director, Jutta Houmoeller, and the Programme officer attached to research in DEA visited ESAU in October for a period of one week. Part of the agenda was to discuss the intended research proposal by ESAU. The delegation met with the research facilitators from Africa Mentoring institute and agreed on the approach to be used for the research. They visited ESAUs auditor as well as DSI to strengthen the working relationships between ESAU and the two organizations. - 4

11 Discussions between ESAU staff at the Secretariat Board room with visitors from DEA, Denmark ESAU has continued to attend workshops and meetings with DPOs and organizations like UNCHO, HURUNET, NUDIPU, and DSI. ESAU participated in the celebration of the IDD day in Nebbi on the 3 rd Dec ESAU received funding from ADD to facilitate monitoring her activies and has continued to work closely with ADD on many advocacy issues like the Commonwealth Disabled Peoples Forum, ESAU participated in the Commonwealth Peoples Forum workshop held at Hotel Africana in November during CHOGM RESEARCH AND DOCUMENRATION ESAU contracted Africa Mentoring Institute to carry out a research on the prevalence rates of epilepsy in October Research on the prevalence rates of epilepsy can provide ESAU with data to be able to lobby for the rights of PWE internationally, nationally and locally. Work on the research is currently ongoing. NEW PROJECT ESAU is mainly funded by Danish Epilepsy Association who apply to Danida for the funding ESAU gets. The project code named Bringing Epilepsy out of the Shadows came to close in July ESAU wrote a proposal to DEA and applied for more funding, August 2007 saw the onset of a new project code named. - 5

12 Bringing Epilepsy Out of the Shadows - Phase Two. This project saw an increase in ESAU s areas of operation from 15 to 20 branches in total. E SAU s Financial Support SAU has been privileged to get financial support from both national and International donors. In due respect ESAU is grateful for this Support from her donors also looks forward for more, stronger and continued financial support. GRAPH SHOWING DONATIONS TO ESAU IN MILLIONS IN UG. SHILLINGS DEA NUDIPU OTHERS ESAU FUNDERS - 6

13 PIE-CHART SHOWING ESAU'S EXPENDITURE 2007 Staff 14% Slice 5 0% Administration 10% Equipment 19% Activities 57% Achievements The Secretariat boosts of a total number of 5 technical staff and 3 support staff. This has facilitated the speedy implementation of program activities in this period ESAU is now administratively operational in 20 district branches. 139 support groups for people with epilepsy have been established at local branch level 15 district local branches have registered as CBOs ESAU applied for funding for the drug bank to IBE and was granted 3 million shillings ESAU continued to support outreaches for treatment of PWE in Soroti, Bushenyi and Ntungamo..A few branches have benefited from the drug bank initiative and over PWE access regular and affordable medication 1 Staff from the Secretariat is undertaking a course in financial management. The Secretariat has participated in the following International celebrations: Mental health day celebrations, International Disability day celebrations, Spot on messages on Epilepsy were placed on the radios Capital Radio, Voice of Teso, Voice of Kigezi, Radio Kitara, Buddu F.M, Radio West, Simba FM, Super FM, Kyoga Veritas, Radio - 7

14 Pacis Arua, Radio Uganda and four talks show on epilepsy were awarded to the Association in Soroti, Kabale, Capital Radio(Kla) and Masindi A Refresher training of all Branch Executives was carried out on a regional basis. This has led to increased mobilization and timely sending in of reports on branch activities. A Strategic planning workshop was held in May last year and a 3 year Strategic plan for the Organization was drawn. Brochures in Ateso, Lugbara, Luganda, Ruyankole-Rukiga, Runyoro, Lunyole, Japhadola, Lusoga and English were produced and thousands were distributed. Brochures in Luo and Madi are yet being developed. 2 sets of posters in English were produced in conjunction with Ministry of Health. The Secretariat has written a series of articles on epilepsy and published them in the media. ESAU hosted a delegation from the Danish Epilepsy Association in October The Board has become stronger and is now better equipped to manage the association activities after a series of trainings in leadership, advocacy and lobbying, community mobilization as well as financial management The Association has continued to build partnerships with other NGOs and organizations both in the disability movement and else where. We secured two scholarships for two of our members to attend Egmont High School in Denmark in 2007 Challenges - Negative attitudes, social stigma and cultural beliefs attached to epilepsy are still a challenge because it is a bit difficult to convince people that epilepsy is not contagious and that it is not caused by witchcraft. - Statistics on the condition are scanty and the Health Management Information System (HMIS) forms do not easily capture this condition. - Although the government has committed itself to providing free medical care in its health units, the supply of anti convulsants is not regular. People are traveling long distances to get the drugs and sometimes they don t get either the nurses or the drugs in the hospitals. - ESAU branch leaders are actively participating in all association activities. This shows the level of empowerment among PWE leaders and their members so far attained in running of the Association affairs Lessons learnt There has been a 50% increase in membership to the Association due to awareness raising, mobilization and sensitization of communities by the association The government and policy makers lack the necessary statistics on which to plan. ESAU has realized this and will later in the year carry out a study in three districts in order to secure some basic statistics on the prevalence of epilepsy and the services required. There are negative economic implications epilepsy has had on families, communities and at individual level. PWE leaders are being trained in the area of IGAs. - 8

15 Awareness and counseling is a major tool in rehabilitation of persons stressed by the conditions created by epilepsy. Way forward ESAU will continue to increase awareness in the community by opening up school epilepsy clubs in selected schools so that students living with epilepsy in higher institutions of learning will be used as role models in other schools to sensitize other students. Training community development assistants, professionals and special needs education teachers will be another strategy to help sensitize the community about epilepsy to create a better understanding of children with epilepsy in schools. Continued advocacy and lobbying at national, District level and imparting of advocacy and lobbying skills among BOD members, PWE and volunteers Building the capacity of volunteers, BOD members, staff and PWE leaders Undertake research on epilepsy in selected districts to provide Ministry of Health with the necessary statistics to facilitate planning. Improving fundraising strategies so as to make ESAUs activities more sustainable. Continued monitoring and evaluation of all organizational programmes Conclusion Despite a few shortcomings ESAU registered notable successes in With the process in place signing of Memoranda of Understanding with District Local Governments in the 20 districts of ESAUs operation, better service provision is anticipated for PWE, as well as the opening of better cooperation channels between the district local governments, opinion leaders, ESAU Secretariat, ESAU District Executive as well ESAU local branch leaders. This hopefully will provide an opportunity to lay better strategies to improve the quality of life for PWE Together we continue in the struggle to bring epilepsy out of the shadows. - 9