esau’s annual report 2007files.zite3.com/data/files/279/252/0/esau annual report... · 2008. 2....

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 16260 Wandegeya Kampala Tel: 0414287700 Email:

[email protected]. Website: www.epilepsy.org.ug

Epilepsy Support Association, Uganda –Annual Report 2007

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“Bringing Epilepsy out of the Shadows”- Phase Two Annual Report 2007

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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 2004. 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 2010. 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.


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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.


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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

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.

A


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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.


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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.


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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


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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


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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 2004 2005 2006/7

Total membership 1,668 2,553 4060

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

.M.

C/m Bushenyi 077266068

2. Odongo Andrew Vice C/m Soroti 0782498677


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3. Ebong Anthony G/Secretary Apac 0774862627

4. Nakkidde Juliet Treasurer Luweero 0752852434

5. Ssabiti Peter Pub Secretary Kabale 07744269426

6. Andema Ben Comm. member Arua 0772545082

7. Lukanda Jane Comm. member Jinja 07551459

8. Namugenyi

Gorretti

Substitute Masaka 0751905222

9. Kebigombe Edith Substitute Ntungamo 0774729270

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.


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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 3rd

Dec 2007.

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 2007. 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 2007. ESAU wrote a proposal to DEA and applied for more funding, August 2007 saw the

onset of a new project code named.


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“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.

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.

0

100

200

300

400

500

MILLIONS IN UG.

SHILLINGS

DEA NUDIPU OTHERS

ESAU FUNDERS

GRAPH SHOWING DONATIONS TO ESAU IN 2007

E


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PIE-CHART SHOWING ESAU'S EXPENDITURE 2007

Activities

57%

Equipment

19%

Administration

10%

Staff

14%

Slice 5

0%

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

10000 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


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� 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.


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� 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 2007. 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.

esau’s annual report 2007files.zite3.com/data/files/279/252/0/esau annual report... · 2008. 2....

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