The Tanzania Heart Club became a stroke support organization member of the World Stroke Organization in 2019. Here, Hussein Liobike, a community health worker, tells us why he was motivated to start the organization to fight against the burden of stroke and heart attacks and get involved in stroke support.
· What has inspired you to be involved in stroke support?
The inspiration is that I want to support stroke survivors as they face many challenges, including social and economic challenges and I want to help to unite them so that they can have a stronger voice in our country and globally. Stroke is a leading cause of death and disability. For stroke survivors and their families it can result in economic hardship. My inspiration is to contribute to reducing strokes in our society and to ensure those that have had a stroke access support. National strategies don't always prioritise their needs, so we need to make sure that they have the appropriate support that they need and to create centres and opportunities for stroke survivors to access services.
· What does stroke support look like in your country?
Stroke support in Tanzania is a still problem because many people don't understand what life after stroke is like and what the needs of stroke survivors are. So we are raising awareness about life after stroke and in the meantime we must support survivors' needs. We are working with stroke survivors to fully understand their experience so that we can provide appropriate support. We are working with families and stroke survivors to support them in daily activities and to keep active.
· How did the project come about?
The project came about after recognising the challenges stroke survivors face and the fact that there is a national stroke burden in Tanzania that is leading to a large number of disabilities and deaths. The burden of stroke and loss of life and disabilities is unjust and I knew that we must take action.
· What has been the feedback from stroke survivors to the project?
The stroke survivors that we support are really positive about the help that we can give, they remain engaged with us and report that they are making progress in their recovery and that we give them hope. The challenge is that we need more tools to support us in our life after stroke activities. We also have to take time to help stroke survivors understand what recovery after stroke can be like, some think that they can be cured by taking some pills.
· What has been the response from others – community, doctors, politicians?
· In the community the mindset about stroke is changing, people are recognising that they need to seek early treatment from hospitals rather than from traditional healers, and that rehabilitation is essential for recovery. Doctors are increasingly understanding how important rehabilitation is to the survivors and some of them are providing rehabilitation services. However these services are not accessible to everyone as they cost money, so we try to advocate for survivors to access free rehabilitation. Politicians are beginning to understand the need for rehabilitation and I am talking with parliamentarians about rehabilitation services in Tanzania, but this will take time as they have many competing priorities.
· What would you say to other people to make them take stroke prevention seriously?
We are sharing with people that stroke can attack anyone, at any time and any age, and can therefore affect peoples' economic viability. We stress the importance of taking stroke prevention seriously by knowing the risk factors for stroke. We are promoting the importance of paying attention to your health and to engage in physical activities, reduce salt and to be aware of and manage high blood pressure. We know that behaviour change can be difficult, so we are persevering!