Introduction

In Kenya, there are estimated 800,000 people with epilepsy. They face numerous physical, social and economic challenges occasioned by their condition. To this end various stakeholders offer health and social services with the aim to control their seizures and to strengthen their participation in society. The Kenya government provides human resource and medical supplies through KEMSA and both public and private hospitals offer clinics where persons with epilepsy can come for diagnosis and prescription. There are various institutions actively creating awareness how one can live beyond epilepsy, both in communities countrywide and through the local radio stations.

Despite the efforts, the health system is still unable to reach out to all persons with epilepsy. In Kilifi, the treatment gap for epilepsy stands at 74.9% (Mbuba et al., 2012 (in press). To strengthen efficiency and responsiveness to the needs and expectations of persons with epilepsy, there is need for a collaborative approach of from stakeholders epilepsy care.

In 2010, National Epilepsy Coordination Committee was formed to tap the expertise, improve interaction, coordinate activities, and diminish artificial competition which suppresses common good in epilepsy work. The members of NECC represent all stakeholders in epilepsy care i.e. Ministry of Health, International Policy makers, pharmaceutical companies, medics and professional societies, NGOs, CBOs, research and academia, and persons with epilepsy.

The committee’s role will be to coordinate the functions of all stakeholders involved in Epilepsy care. Primary activities will be carried out by the individual organisations which will report to their representatives in the coordinating committee. Through this, the NECC strives to establish a continual improvement process where stakeholders unite efforts to ‘oil’ the system of epilepsy care.

To respond to the needs and expectations of persons with epilepsy, the following steps are proposed to apply in the continuous improvement in the Kenyan Epilepsy Care:

1. Mobilize and train medical staff
2. Create awareness and give trainings to the community
3. Medical support and data collection
4. Research and data collection from private and public facilities
5. Design and redesign plan
6. Non-stop lobby and advocacy for involving influential policy makers, financers and implementers to improve the system

Despite the efforts, the health system is still unable to reach out to all persons with epilepsy. In Kilifi, the treatment gap for epilepsy stands at 74.9% (Mbuba et al., 2012 (in press). To strengthen efficiency and responsiveness to the needs and expectations of persons with epilepsy, there is need for a collaborative approach of from stakeholders epilepsy care.

In 2010, National Epilepsy Coordination Committee was formed to tap the expertise, improve interaction, coordinate activities, and diminish artificial competition which suppresses common good in epilepsy work. The members of NECC represent all stakeholders in epilepsy care i.e. Ministry of Health, International Policy makers, pharmaceutical companies, medics and professional societies, NGOs, CBOs, research and academia, and persons with epilepsy.

Context; environmental scan on Epilepsy in Kenya

Epilepsy is a chronic disorder of the brain characterized by repeated seizure episodes. It is cosmopolitan in distribution found in every community, race, age and has been known to mankind since antiquity. However, the condition is still shrouded in mystery and the society still associate it supernatural forces. This scenario results into a huge social burden as people with this condition are invalidated and ostracised due social stigma placed on them.

In order to understand the burden and distribution of Epilepsy in Kenya, epidemiological studies have been carried out by various research institutions and individuals. These studies have shown varying prevalences estimates as follows: 18/1000 (Kaamugisha and Feksi, 1988); 4/1000 (Snow et al1994); 11/1000 (Mung’ala-Odera et al. 2008) and 4.7/1000 (Edwards et al.,2008). Both the incidence and prevalence rates are highest in the 13-28 year age bracket with male preponderances. Risk factors associated with epilepsy include history of seizures (febrile and afebrile) and head trauma.

Currently, there are ongoing epidemiological studies that suggest higher prevalence than previously estimated. A study of prognosis and associated factors, and a randomized controlled trial of educational interventions are also underway. Preliminary data from these studies suggest mortality in people with epilepsy is more than six times higher compared to the general population and that knowledge about causes and prognosis of epilepsy are poor. Most of the mortality is associated with non-adherence to anti-epileptic drugs for various reasons which include poor supply at primary care level, cost of accessing and buying medication and negative beliefs or lack of knowledge about biomedical treatment. This calls for a more comprehensive and multidisciplinary approach in the efforts aimed at reducing the burden of epilepsy.

Treatment gap

Treatment gap is the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time, expressed as a percentage (The atlas of epilepsy care in the World, 2005). A systematic review of the epilepsy treatment gap worldwide reveals a “dramatic global disparity in the care of epilepsy patients between high- and low-income countries and between rural and urban settings”. As the USA has a treatment gap of 7% (Meyer et al., 2009), Kilifi is faced with a treatment gap ten times higher; 74.9% (Mbuba et al 2012 (in press)).

The World Epilepsy Atlas gives four factors (the four A’s): lack of available, accessible and affordable health care and lack of awareness. Factors affecting the availability of treatment are: Inadequate health delivery systems; Lack of trained personnel; Lack of essential drugs and Traditional beliefs and practices that often do not consider epilepsy as a treatable condition (De Boer et al., 2007)

Governmental role in epilepsy care

The Government developed a strategy to involve stakeholders in health care between 1999-2004. A sector wide approach to coordinate the activities had three levels namely Joint interagency coordinating committee; Interagency coordinating committee (ICC) and District stakeholders forum. Recently Health sector coordinating committees (HSCC) and Provincial stakeholders forum (same composition as the district forums) have been added.

The NCD ICC’s key role has been to coordinate work on NCDs, oversee work of various working groups, provide a forum for members to share information, and to discuss and seek solutions on NCD burden in Kenya. It draws membership from representatives of various stakeholders, development partners, and implementing partners and is advised by the HSCC. The department of NCD in the ministry provides leadership. NCD ICC meets every month and additional meetings called by chair according to need. However epilepsy has been given little attention by the government and that no resources have been allocated for its work.

Role of stakeholders in epilepsy care in general

There are various organizations that operate in the Epilepsy care sector. However, their work is not well coordinated leading to duplication of roles and unsynchronized health promotion messages. This calls for the need to recognize the professional pool available and tap the expertise, improve interaction between various stakeholders, coordinate activities, and diminish artificial competition among various stakeholders and enhance common good in epilepsy work.