Pregnancy Planning and NHS Screening for Sickle Cell and Thalassaemia

Genetic testing and screening for sickle cell and thalassaemia can shape life-changing decisions — often before any symptoms appear. Yet many people trying to understand their risk still face confusion, stigma and unequal access to care. In this episode of The Sickle Cell Society Podcast, host Kesewaa Browne brings together clinicians, screening experts and people with lived experience to explain how NHS screening works, when testing should happen, and why it matters for pregnancy planning, fertility and family life. The panel discusses newborn, antenatal and adult screening, the importance of knowing your genotype early, barriers to testing in different parts of the UK, and the emotional and cultural stigma that still surrounds genetic testing. They also explore fertility options, including IVF and genetic counselling, and why men are often missing from pre-conception testing — and how that needs to change. Drawing on expert insight and personal stories, the conversation reflects on how screening pathways have developed since the 1990s and explores how access works in practice across different settings. The panel covers all aspects of this complex and widely discussed topic. This episode is in collaboration with ⁨‪@teamukts‬ and funded by the ‪@NHS‬ Sickle Cell & Thalassaemia Screening Engagement Project. Host : Kesewaa Browne Guests : Iyamide Thomas, Sickle Cell Society Gabriel Theophanous - UK Thalassaemia Society Amanda Hogan - NHS England Antenatal and Newborn Screening Team Nkechi Anyanwu - Community Matron for sickle cell and thalassemia services in Southeast London Oddy Cooper - parent of a thalassaemia patient, and Vice Chair at UK Thalassaemia Society Fumi Foster - lives with sickle cell disorder