SAOK was formed in May 2015 by stroke survivors attending occupational therapy at Kenyatta National Hospital. This group saw the need for information provision and post-hospital services for stroke survivors. SAOK’s mission is to create awareness and enhance the availability and provision of services for people affected by stroke. Its vision is that in Kenya, the causes and impact of stroke will be understood by the public and health professionals, and that those affected by stroke get the treatment and care that they are entitled to. SAOK is a not-for-profit organization and the first association of its kind in Kenya, with the sole focus of raising awareness and advocating for stroke prevention, treatment and care. SAOK believes that the rights of stroke survivors should be upheld and it seeks to challenge discrimination and the social exclusion of people affected by strokes.
Context
Stroke is a leading cause of death in Kenya. According to a 2014 survey in Kenya, 85% of people survive a stroke in the country, and of these, after a very short stay in hospital or rehabilitation, over 80% are discharged home. In Kenya the challenge is how to improve quality of life in the community after stroke survivors are discharged.
Priorities
The major drivers of the increasing stroke burden in Kenya are the lack of understanding of stroke risk factors and poor knowledge of the signs of stroke. In addition there is little recognition that there can be life after stroke. In response to these drivers, SAOK has prioritized:
- Producing and disseminating stroke information on the facts about stroke, and sharing with health centers and hospitals
- Facilitating services and support. SAOK is a membership organization and establishes support groups
- Influence public and decision makers by engaging in the World Stroke Campaign, sensitizing the general public through blood pressure screening and lifestyle change awareness. At the policy level, SAOK’s focus is to call for stroke to be better addressed in the 2015-2020 National Strategy for the Prevention and Control of NonCommunicable Diseases (NCDs).
Outcomes and Successes
From the outset, stroke survivors have been involved in every stage of SAOK’s development. This has fostered a spirit of inclusiveness and openness; ensuring members have ownership of activities.
SAOK has recognized the importance of working with others. The Ministry of Health, NCD Alliance of Kenya and the Nairobi City County have been instrumental in assisting SAOK in planning events and networking. SAOK has had assistance from Medecins Sans Frontieres, who provided laptops, donated materials for SAOK’s initial campaign, and actively participated in planning meetings, the awareness walk and gave health talks. The Kenyatta National Hospital has assisted by providing an operational base, providing health workers during the World Stroke Day event and during ongoing awareness campaigns. Stroke survivors can also use the hospital’s physiotherapy and occupational therapy facilities The National Council for People with Disabilities has provided assistance devices, assessment, support and sponsorship to members. It has also given support in preparation and participation in the World Stroke Day event along with The National Fund for the Disabled of Kenya, United Disabled Persons of Kenya and Heart and Stroke.
Challenges
There are a number of challenges faced by SAOK:
- A lack of communication facilities and equipment such as computers, photocopier, and printer, along with internet and airtime
- SAOK has no official transport for home visits to stroke survivors
- Stroke is not factored into the Kenya National Strategy for the Prevention and Control of NCDs
- There are no complete statistics and records of the numbers and locations of stroke survivors in Kenya
- Survivors often get sacked from employment rendering them unable to afford basic treatment and rehabilitation
Future Plans
SAOK would like to access Kenyan Government initiatives that support people with disabilities, to help in generating funds for the organization alongside generating income for its members.
SAOK sees the future sustainability of the organization in increased engagement with volunteers, including training of volunteers.
SAOK wants to engage the relevant authorities to have stroke recognized and treated as a medical emergency in order to minimize its impact.
For information on the Stroke Association of Kenya:
www.strokeassociationofkenya.or.ke
strokeassociationofkenya@gmail.com