King’s College London in partnership with the College of Medicine and Allied Health Sciences (COMAHS) at the University of Sierra Leone, the Universities of Glasgow and Central Lancashire and Guy’s and St Thomas’ NHS Foundation Trust, established a stroke register in Sierra Leone in 2019. Funded by the National Institute of Health Research (NIHR), the Stroke in Sierra Leone (SISLE) research project aims to improve outcomes for stroke patients. The register is now the largest of its kind in Sub-Saharan Africa with over 1000 stroke patients.
Over the last 3 years, SISLE have empowered stroke survivors and caregivers to have direct involvement in research priority setting, abstract authorship, and co-production. For example in response to patient and caregiver feedback highlighting the need for stroke education resources specific to Sierra Leonean contexts, the SISLE team are now working towards co-producing an educational booklet through a series of consultation workshops and a review of existing resources. These efforts aim to improve accessibility to stroke information in the Sierra Leonean health system.
‘Recovering is a slow process, and there are myths and stigma around stroke. But being involved in the SISLE project has inspired myself, other survivors and caregivers to establish The Sierra Leone Stroke Association, a local NGO. Survivors can now share their stories and advocate through their own body. We honour survivors and aim to raise awareness and challenge stigma. Many thanks to King’s College London, the NIHR, the African Stroke Organization and World Stroke Organization for bringing attention to the issue of stroke in Sierra Leone,’ says Mr J Williams co-founder of Stroke Association Sierra Leone.
As a result of the SISLE’s policy advocacy, stroke is now for the first time, a key focus in the national Non-Communicable Disease Strategic Plan 2021-2025. The new plan focuses on preventing stroke and supporting the implementation of stroke unit care in Freetown and across the country. Operating within a long-term health partnership between King’s and Sierra Leone, where a small team is embedded within Connaught Hospital, SISLE has also helped to strengthen clinical capacity to manage stroke patients. This has included developing and implementing a nurse-led swallow screening approach and hosting a speech and language therapist and occupation therapist from the NHS, to support the development of stroke services at the hospital.
'Stroke is my passion. This passion grew from my involvement in the SISLE project. After attending one of the community engagement meetings, I went back home and felt inspired to form an organization who will advocate for the recognition of people living with stroke in Sierra Leone' adds Mr Daniel James, co-founder of Stroke Association Sierra Leone.
As we near the end of our project life cycle, the question of sustainability is at the forefront of our minds. What elements of our project can sustain without the presence of a research team and funding? Who will maintain the momentum in advocacy? Our answer lies, in part, with SASL who intend to continue as a platform for peer support and continue SISLE’s legacy in advocating for improved health outcomes for stroke patients in Sierra Leone. We are now in the process of supporting their registration as members of the WSO, ASO and identifying funding opportunities.
For more information visit: https://www.kcl.ac.uk/research/stroke