Mobilising support example:
Epilepsy awareness

The Komesha Kifafa Epilepsy Caravan on the road
Special Epilepsy Clinics are held in many counties now
Knowledge management and awareness raising are very important
OrganisationKenya Association for the Welfare of People with Epilepsy (KAWE)


KAWE launched a campaign to get the county health services to provide affordable and accessible epilepsy management services. The aim was to reach 4 counties and as a result of the action epilepsy clinic services were indeed started in Kisumu, Mombasa, Isiolo and more clinics in Nairobi. 
With financial support of the Lotto Foundation KAWE was moreover able to expand the programme to 11 counties, raising awareness and giving information about epilepsy through the 'Komesha Kifafa Epilepsy Awareness Caravan'. 

Problem analysis

The dream is: people with epilespy living life to their full potential, which entails good health, economic independence, education and a social life. KAWE met with stakeholders and the issue mentioned most was the need for awareness creation through existing suitable channels and community structures. KAWE got the feedback from 51 patients at 3 KAWE epilepsy clinics (31 youth and adults with epilepsy and 20 parents of children with epilepsy). The most repeated concerns are: distance from health facilities offering epilepsy services; cost of medicines; dependence on family or friends/lack of jobs and income; challenges with schooling; the long waiting list for service at KAWE epilepsy clinics and  the effects of seizures, such as injuries, burns and loss of memory. All these issues have to do with availability and awareness of quality accessible (affordable and within reach) epilepsy management services.

Solution analysis

Influence County Health Services to provide epilepsy management services and epilepsy awareness to the public:
1. Mobilise stakeholders and jointly push for implementation of the NCD (non-communicable disease) Strategy and National Epilepsy Guidelines.
2. Raise awareness.

Stakeholder analysis

Which stakeholders (NGO’s, government, private sector) did you identify as allies and how did you involve them?
KAWE identified the county health service teams as allies as they have the mandate to provide health services; appointments were made to meet them. With these stakeholders KAWE discussed MOUs (MOU = Memorandum of Understanding) on terms of collaboration. As a result they successfully got epilepsy clinics initiated in Kisumu and Mombasa. Plans are underway to start at least 7 in Nairobi and one in Isiolo is about to be launched. Moreover KAWE expected the National Council of Persons with Disability, the local administration and the Lotto Foundation to be useful allies.

Which stakeholders did you identify as opponents and why were they opposed?
Herbalists, claiming to cure epilepsy; faith healers who believe epilepsy is demon possession.
Alcohol and drug suppliers, opposing messages on alcohol and drug induced epilepsy.
Moreover some clinics and persons who did not want to bear the cost or expected a remuneration.

How did you involve your beneficiaries in the stakeholder analysis/campaign?
KAWE got the feedback from 51 patients at 3 KAWE epilepsy clinics (31 youth and adults with epilepsy and 20 parents of children with epilepsy). The most repeated concerns were: distance from health facilities offering epilepsy services, cost of medicines, dependence on family or friends due to lack of jobs and income, challenges with schooling, long time taken to be served at KAWE epilepsy clinics and effects of seizures such as injuries, burns and loss of memory.

Short description of the organisation implementing the action/campaign

KAWE is interested in improving the welfare of people with epilepsy through activities in
1. Health care: to reduce the existing epilepsy treatment gap by facilitating universal access to affordable, sustainable and comprehensive quality health care.
2. Knowledge management: generating and sharing knowledge on epilepsy by being at the forefront of research, as well as to offer expert advice, training and information to raise people’s awareness, remove stigma/discrimination and improve quality of care and management.
3. Influencing and partnerships: to facilitate voice, facilitate inclusion and equal opportunities for people with epilepsy, besides contributing to better practice for epilepsy care and management through influencing policy and thought on epilepsy.
4. Institutional development: strengthen leadership in delivering cutting edge integrated health, education and care services for people with epilepsy.

Action period
November 2015 to October 2016

The aim was to get the county health services to provide affordable accessible epilepsy management services as per the National Epilepsy Management Guidelines and the government's Non-Communicable Diseases strategy.

Action results
KAWE managed to get support from the Lotto Foundation and while they initially planned to target a few counties they were able to expand the plan to 11 counties.
In 4 of the counties KAWE booked tangible results in terms of starting epilepsy clinic services: Kisumu, Mombasa, Isiolo and more clinics in Nairobi.
With the support of the Lotto Foundation KAWE was able to organise the Komesha Kifafa Epilepsy Awareness Caravan, targeting 11 counties. They already had success in Kilifi, Kwale and Mombasa and will proceed to Isiolo, Laikipia, Nyeri, Meru and Kirinyaga.
KAWE captured community perceptions on epilepsy on video and will continue to use this in their efforts to get the counties to prioritise epilepsy.

Description of preparatory activities
1. KAWE researched the setup of the county health services to ensure they were addressing the right persons (decision makers).
2. Booking appointments and visiting the county health directors to discuss improving epilepsy services in the counties.
3. Developing a proposal to pitch to the county teams on immediate activities.
4. Developing plans for the Komesha Kifafa caravan; preparing a pitch for the Lotto Foundation.

Description of implementation
1. Discussions with the Nairobi county health services team.
2. Development of MOUs.
3. Travel to the counties.                                                     
4. Meeting the county Directors of Health.
5. Pitching the idea of the Komesha Kifafa Epilepsy Caravan to Lotto Foundation.
6. After Lotto Foundation promised to fund the Caravan: developing posters, flyers, getting a roadshow truck and identifying appropriate Masters of Ceremony. Getting the counties as partners to waive costs for poster and flyer distribution, waive costs for loud music and use of public spaces to stop and pass on information.

Description of time investment
74 days

Komesha Kifafa Caravan - county visits, transport and per diems for staff and director – 200,000 Printing of posters, flyers, T-shirts - 400,000.
Hiring of truck and executing the Caravan - 900,000 until September 2016; KAWE has a further 1.6 M available for the remaining counties.

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