Sickle Cell Society Podcast
The Sickle Cell Society is having open discussions about challenging subjects in this podcast.
There are challenges to living with sickle cell disorder, and there are a lot of subjects that aren't openly discussed, in a way that might help others to live their best life with the condition. We are unpicking some subjects by inviting sickle cell doctors and patients onto the podcast couch to share their experiences and answer questions.
About us
We're the Sickle Cell Society, and we're the UK’s patient charity for people living with sickle cell disorder.
We believe that people living with the condition have the right to quality care. We support and represent people, patients and families affected by sickle cell disorder to improve their overall quality of life.
We work with health care professionals, pharmaceutical companies, researchers, parliamentarians, parents, and people living with sickle cell to support and advise, raise awareness of the disorder and campaign for improvements in treatments and care. Our aim is to support those living with sickle cell, empowering them to achieve their full potential.
Sickle Cell Society Podcast
Pregnancy Planning and NHS Screening for Sickle Cell and Thalassaemia
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When it comes to sickle cell and thalassaemia; genetic testing and screening— early checks that can identify a condition or carrier status, often before any symptoms appear — can shape life-changing decisions. 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 a specialist nurse, screening experts and people with lived experience to unpack everything about screening and testing, including when it should happen, and why it matters so much for family planning, pregnancy and fertility.
The panel explores:
- How and when screening happens across the UK’s NHS — including newborn, antenatal and adult testing
- Why knowing your genotype or carrier status early can make a critical difference towards informed choice
- Barriers to accessing testing, particularly in areas of low prevalence
- Inequalities in screening, GP awareness, and regional services
- The emotional and cultural stigma that still surrounds genetic testing
- Fertility options, including IVF, genetic counselling, and pre-implantation genetic testing
- Why men are often under-represented in pre-conception testing — and how that can change
Drawing on both professional expertise and personal stories, the conversation examines how screening pathways have evolved since the 1990s and how they operate today. The panel explores this important topic in depth, sharing insights relevant to patients, families and professionals alike.
This episode is produced in collaboration with the UK Thalassaemia Society, and is funded by the Society’s NHS Sickle Cell & Thalassaemia Screening Engagement Project commissioned by NHS England.
@SickleCellUK
https://www.sicklecellsociety.org/
Charity no. 1046631
