The Sickle Cell Society (SCS) and the UK Thalassaemia Society (UKTS) have worked in partnership with the NHS sickle cell and thalassaemia (SCT) screening programme to engage with communities less likely to access health information through usual NHS channels. The societies provide feedback from people that share the same population background or have experience of the condition and to feed into the programme updates and improvements.
To develop strategies for supporting parents with a newborn carrier or positive screening test result, the SCS and the UKTS undertook user feedback sessions to understand how health professionals communicate sickle cell and thalassaemia results to parents as part of the screening pathway and how support could be improved. The overall aim of the sessions was to share feedback on the lessons learned from the experiences of parents, so the screening programme can update its standards and guidelines and public and professional educational resources.
Dr Claudine Matthews, a close collaborator with The Red Cell Network, is making great strides in bringing nutritional care into the mainstream of treatment for haemoglobinopathy patients. Her recent article made the front cover of BDA The Association of UK Dietitians and you can read the article.
FIRST AND ONLY: Powering Up Your Mindset for Transplant and Living Sickle Cell Free
Former Sickle Cell patient Adewale Lawal has written a book about his experiences of living with sickle cell disorder, and his journey to receiving the first stem cell transplant in the UK. The book explains how the power of a positive mindset can overcome anything, it is just about how to obtain it.