Started as a patient and caregiver reference group in the set-up phase of the SISLE project, the Stroke Association Sierra Leone is continuing to raise awareness of stroke.
King’s College London in partnership with the College of Medicine and Allied Health Sciences 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 in the UK, the Stroke in Sierra Leone (SISLE) research project aimed to improve outcomes for stroke patients.
The SISLE project was led by Professor Catherine Sackley at King’s College London. As part of the project, the qualitative research and community engagement team, which included Jess O’Hara, Alberta Sama and Professor Christopher McKevitt, facilitated stroke survivor group meetings and empowered stroke survivors and caregivers to have direct involvement in research priority setting, abstract authorship, and co-production.
From this stroke survivor group the Stroke Association Sierra Leone was established and legally registered as a non-governmental organisation in 2021. The Stroke Association Sierra Leone now has a membership of 90 stroke survivors and carers.
‘The stroke survivors organization in Sierra Leone means so much to all survivors and their caregivers and this monthly experience sharing event is looked forward to with hope. So the monthly meetings is one way of making sure people know they are not alone. Also we are embarking on an awareness raising programme to educate people about stroke and its prevention.’ James Williams
The members of Stroke Association Sierra Leone knew from their own experience that there was little knowledge about stroke in the community. Having identified stroke awareness as a key priority, they targeted radio stations, newspapers and TV stations that have a huge audiences.
The Stroke Association Sierra Leone has begun to challenge views in the community that stroke is a death sentence and the myths that stroke is caused by sex or witchcraft.
As the SISLE project comes to an end, the Stroke Association has started to establish relationships with decision makers, including Ministry of Health officials and international organisations like the World Health Organisation.
The Stroke Association Sierra Leone has come a long way in a short time. Although the organisation wants to build incrementally, it wants to be a viable organisation and have funds to conduct community outreach and to hold monthly meetings, which it views as crucial for the life after stroke of members.
To read the full case study on the progress of the Sierra Leone Stroke Association please visit WSO’s online platform Stroke Connector.
Further reading: Stroke in Sierra Leone: Case fatality rate and functional outcome after stroke in Freetown
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