Breaking the Silence: Implementing a Black led peer support partnership to improve access to living donor kidney transplantation for Black patients

Introduction: Pre emptive living donor kidney transplantation (LDKT) offers the best outcomes for end stage kidney disease, yet Black patients face major inequities in access. Gift of Living Donation (GOLD) is a Black led peer support charity offering culturally specific support. We tested whether an NHS community partnership with GOLD could be implemented within transplant pathways and address barriers to discussing LDKT.
Methods: We ran a 1 year quality improvement pilot across 3 London hospitals from February 2023-24. Black and mixed Black adults with advanced CKD were identified from clinical records and offered referral. Plan Do Study Act cycles were used to address implementation barriers. Evaluation included service metrics, questionnaires from patients who spoke with GOLD, interviews with successful donor recipient pairs and interviews with referred patients who did not speak with GOLD. Data were analysed using open coding and focused thematic analysis.
Results: Of 2002 patients screened, 635 were potentially eligible for transplantation and GOLD referral and 575/635 were offered referral. There were 149 referrals, generating more than 180 hours of conversation, with 17 potential donors identified, 11 contacting local teams and at least 2 LDKTs completed to date. Among patients who spoke with GOLD and completed questionnaires, acceptability was high, with 35/36 recommending the service, 29/36 reporting changed views about transplantation and 25/36 feeling more confident discussing LDKT with loved ones. Thematic analysis showed GOLD was highly effective at addressing individual and relational barriers, with themes of breaking the silence, knowledge as enabler and cultural safety and authenticity. Many moved from shame and fear to confidence and reframed LDKT as a realistic first line option. In contrast, interviews with successful donor recipient pairs, (n=5) suggested most had received unsolicited offers from relatives and wanted more practical preparation rather than help asking for a kidney. Among referred patients not reached by GOLD (n=16), themes of a ‘black hole of engagement’ and ‘the impossible ask’ reflected missed contact, uncertainty about GOLD’s role, fear of burdening relatives, limited family networks and social instability. Peer support was most effective for individual and relational barriers, but less able to address disengagement and constrained social networks.

Conclusion: This NHS community pilot shows that a partnership with a Black led peer support service is feasible, highly valued and can address barriers to LDKT that standard care alone does not. GOLD contributed cultural safety and relational trust beyond standard care and helped reposition LDKT as an early option rather than a dialysis first default. Further evaluation is now needed to optimise reach and define how this model can be integrated within transplant pathways particularly for patients facing more complex social barriers.