Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals

Shortfalls in haemoglobinopathy provision result in patients and their care rs receiving inadequate support. This paper, by drawing on material from a project evaluating service provision to families caring for a child with a sickle cell disorder or thalassaemia, discusses screening and counselling s ervices. It explores the perspectives of parents, front-line practitioners, managers and health commissioners. Pour quality care, inadequate informati on and professionals insensitivity were salient themes in parental accounts . The parents' experience also confirms the problems faced by minority ethn ic people in having their welfare needs recognised, more generally. Althoug h our focus in on genetic conditions affecting minority communities in the UK, the issues we address are at the heart of the 'new genetics'. (C) 1998 Elsevier Science Ltd. All rights reserved.