Epilepsy support association uganda

Improving Maternal, Sexual and Reproductive Health through the Rights Based Approach among Rural Communities in Uganda


Voices for Health Rights (VHR) a civil society coalition advocating for the promotion of the right to health will implement the advocacy project employing the Rights Based Approach in partnership with Sida.VHR maternal health advocacy program aims at contributing to the realization of MDG 5 through community empowerment, promoting access and utilisation of maternal, sexual and reproductive health services among rural communities in 18 districts of Uganda.

In line with the core focus of VHR on health rights, 11 Organisations which include Reproductive Health Uganda (RHU), Traditional and Modern Health Practitioners Together Against AIDS and other Diseases (THETA), Action Group for Health, Human Rights and HIV/AIDS (AGHA), Health Rights Action Group (HAG), Mental Health Uganda (MHU), Sickle Cell Association, Epilepsy Support Association Uganda (ESAU), Joyce Fertility Support Centre, National Community of Women Living with HIV/AIDS (NACWOLA) and Basic Needs Uganda (BNUU) proposed a 3-year advocacy program focused on the right of all mothers to life and health, as provided for in the international covenants on human rights of 1948 and 1966 and the Uganda Constitution of 1995. The Swedish International Development Cooperation Agency agreed to fund the project.

VHR maternal health advocacy program aims at contributing to the realization of MDG 5 through community empowerment, promoting access and utilization of maternal, sexual and reproductive health services among rural communities in 21 sub counties in 8 districts in Uganda namely; Hoima, Mityana, Mubende, Sheema, Oyam, Nwoya, Mayuge and Soroti. The project targets adults in the reproductive age group of 15 -49 and was officially in July 2011.

ESAU being a full member of the VHR Coalition,was among the 11 out of 14 member organisations that were recomended to implement the Maternal Health project.Therefore ESAU implements this project in the districts of of Soroti and sheema but specifically in the subcounties of Tubur and Shuuku respectively.
The project is looking at 3 main result areas that include Awareness and Demand of maternal health services, Access and Utilisation of maternal health services and Social Accountability. The 3 year project is so far half way and in a midterm review is to be conducted in November 2012 to assess the progress, challenges and recommend possible interventions.


  1. To empower communities to demand for quality maternal, sexual and reproductive health services.
  2. To promote access and utilization of maternal, sexual and reproductive health services among communities.
  3. To increase capacity of communities/groups to monitor and hold key duty bearers accountable for delivery of maternal sexual and reproductive health services.
  4. To strengthen institutional capacity of VHR for effective implementation of quality MSRH program

Globally, every year around 8 million children die of preventable causes, and more than 350,000 women die from preventable complications related to pregnancy and childbirth. MDGs number 5 focuses on Reduce maternal mortality ratio by three-quarters and achieving universal access to reproductive health, by 2015. Under this MDG, main indicators include maternal mortality ratio, Proportion of births attended by skilled health personnel, Contraceptive prevalence rate, Adolescent birth rate, Antenatal care coverage (at least one visit and at least four visits) and Unmet need for family planning

The maternal mortality ratio in Uganda has remained high over the last 15 years; reported at 527 in the 1995 Demographic and Health Survey, 505 in 2000/2001, and 435 in 2006 per 100,000 live births. For Pregnant women and newborns alike, the greatest risk of death comes during child birth and in the first few hours and days afterwards. Adolescents are also vulnerable to early pregnancies and unsafe abortions contributing to high maternal mortality. It is therefore important that men, women and young people are empowered to make informed choices over their lives including sexuality.

Whereas M&SRH services have been expanded to the lower level health facilities, still about 60% of women deliver at home or at the hands of unskilled attendants most of whom are TBAs. Inadequate or lack of access and utilization of maternal, sexual and reproductive health services is compounded by the lack of capacities of claim holders to demand for the services, negative attitudes of health workers as well as inadequacies in the supply chain side. The ability of the communities to hold the key duty bearers of M&SRH services to provide quality services and the inability of the health care system to respond appropriately to the demands of the community is a critical gap that requires innovative strategies to ensure increased access and use of maternal services.

Maternal health and epilepsy
Epilepsy is a common neurological disorder affecting more than 50 million people in the world. It accounts for 0.5 per cent of the global burden of disease, with an estimated 7 million disability adjusted life years annually. According to an estimate by World Health Organization (WHO) in 2004 more than 80 per cent of the global burden of epilepsy is found in the developing countries, with 10 million cases in Africa alone.

Also according to WHO, between 2-3 per cent of any population in a developing country is expected to have epilepsy. The incidence of epilepsy is thought to be higher in Sub Saharan Africa because of more birth related brain injury and central nervous system infections. For example, many children get epilepsy because their mothers deliver at home without the help of a qualified midwife (40 per cent of mothers). The high incidence of malaria, tape worms, malnutrition are also likely causes of epilepsy. Epilepsy is associated with increased mortality, but the causes and magnitude of the mortality are not established in Africa. Many of the causes are easily prevented, and the symptoms can be controlled with relatively inexpensive medication if properly adhered to.

The number of PWE is estimated to be 500,000 in Uganda. However, due to lack of definitive studies undertaken to establish the number and prevalence rates of epilepsy, this number may be more. In 2008, ESAU carried out a study on the knowledge, attitudes and prevalence rates of epilepsy in sample districts as a representative sample of Uganda. The study undertaken in the districts of Soroti, Mukono and Bushenyi was targeting a total of 900 respondents, 300 from each district, and an overall target response of 97 per cent was achieved, represented by 99.7 per cent, 98.7 per cent and 93.0 per cent in the 3 districts respectively.
From the 3 districts, the survey covered 3 Sub Counties, 1 municipality, 12 parishes and all the villages in the selected parishes. Two of selected districts were districts where ESAU had a presence while the third lies outside the project area. ESAU's findings were surprisingly significant; in the two districts covered by the ESAU project, the prevalence rate of epilepsy was found to be 8 per cent while in the district outside the project area the prevalence was around 3 per cent. This gives an average prevalence rate in the sampled area of 6.9 per cent. Among the sampled PWE, at least 70 per cent claimed to have spent over 5 years with the illness.

The proportion of mothers attending antenatal care (first visit) in Uganda has increased from 87 per cent in 1988 to 94 per cent in 2006. However, the proportion attaining full Antenatal Clinic (ANC) like 4 or more visits remained low; at 47 per cent in 1995, 42 per cent in 2000 and 47 per cent in 2006. A very small proportion start attending in the first three months of pregnancy (14 per cent in 2000, 16 per cent in 2006). The quality of antenatal care received by mothers has major gaps, with only 35 per cent of surveyed mothers in the 2006 UDHS reporting that they received information on signs of pregnancy complications. Although 71 per cent of the health facilities surveyed in the 2007 national health services provision survey reported that they offer antenatal service, only 30 per cent were providing this together with tetanus vaccination for mothers and post-natal care.

Women with epilepsy rarely access this service as required due to cultural beliefs and stigmatisation attached to epilepsy, thus an inferiority complex as a result of having epilepsy, a situation that jeopardises their maternal health.

Only 36 per cent of pregnant women deliver in health facilities, while 21 per cent do not receive any care at all and in rural areas more than 20 per cent of pregnant women deliver at home with neither a trained nurse nor a traditional birth attendant. (UDHS REPORT 2006).
According to Martha J.2002, approximately 1 percent of the population has epilepsy, making this one of the most common chronic health conditions affecting reproductive-aged women. Epilepsy in women raises special reproductive and general health concerns especially when it comes to proper delivery of live children and the condition of their mothers during and after birth. Women wonder what their chances of having healthy babies are because of the stigmatization and myths surrounded by the condition.

In the 2 districts of Soroti and Sheema where ESAU is implementing this project, the following have so far been successfully achieved.

  • The project was launched both at the district and subcouty levels
  • 40 selected community advocates have been trained in patients rights, referral, counselling and other basics in community work
  • All the 40 community advocates have been given bicycles to ease their movement during the implementation of the project
  • Some health workers and community leaders in the Subcounties of the project implementation have been trained on the Patients Charter and the roles of Health Unit Management Committees (HUMCs)
  • The project is so far on course and in line with the targeted objectives.