Hidden CKD: identifying early disease in high-risk communities

The Hidden-CKD project is a collaboration between NHS healthcare professionals, charity organisations and a communications agency. It was set up to reduce inequalities in kidney health among the African and Afro-Caribbean community.

Hidden-CKD was started in 2019, when Africa Advocacy Foundation (AAF) members took part in a focus group about chronic kidney disease (CKD) information booklets at King’s College Hospital. Feedback from the focus group suggested that the information was written by professionals for professionals and was not understandable or relatable enough.

Hidden CKD logo

The goal of the Hidden-CKD project is to co-create and co-design useful and informative kidney health materials specifically tailored for members of the African and Afro-Caribbean community, providing a model which can be translated to other high-risk communities.

Kidney Care UK provided funding and support to King’s College Hospital for the project, in collaboration with AAF, Eagle London (a Black-owned media company) and members of the African and Afro-Caribbean community.

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CKD screening in the African and Afro-Caribbean community

The Hidden-CKD team have recruited and trained dedicated community kidney ambassadors (peer educators) to carry out community-based kidney health screening. They are using urine testing technology and educational materials to improve early detection of kidney disease in the African and Afro-Caribbean community.

The team engage with community leaders and collaborate on strategies to promote kidney health. During community engagement events, the peer educators provide culturally appropriate health information to enable community members to self-manage whilst maintaining their kidney health. They also provide support for community members to perform their own kidney health check in the comfort of their homes.

Since the project started, the team have grown into an amazing, diverse community. Project lead Roseline Agyekum explains, “We have undertaken community engagement events in both faith and non-faith-based groups across South London and have screened the kidney health of almost 200 community members. Hidden-CKD is now so much more than just a healthcare team: we are a community ambassadors-led team, and this is what makes so unique and so successful!

"Hidden-CKD allows the community members a completely safe space in which to discuss their worries, fears and feelings about their kidney health and other long-term conditions. We know that as wonderfully supportive as family members and loved ones can be, there’s nothing like being able to chat privately with other people who directly understand your experiences, beliefs and culture.”

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Kidney health support

The Hidden-CKD team also provides dedicated follow-up support from kidney doctors and community ambassadors if people are found to have poor kidney health.

Local support is also available from Kidney Care UK, the Africa Advocacy Foundation, the A. T. Beacon Project, Doctors Of The World and Migrants’ Rights Network.

Find out more about Hidden-CKD on their website or on social media, or email [email protected].