In March 2015 the Sickle Cell and Thalassaemia Screening Programme Advisory Group set up a sub group to focus on the timeliness of antenatal screening and prenatal diagnosis. The subgroup included parents of children with sickle cell disease and thalassaemia, representatives from UKTS and the Sickle Cell Society and representatives from midwifery, obstetric and genetic counselling professional organisations.
The aim of the sub group was to identify all possible causes why screening and testing is not carried out in a timely fashion (according to the Screening Programme standards, all women at risk should receive an offer of prenatal diagnosis by the time they are 12 weeks’ pregnant). In order to find out why the timeliness standards were not being met, we needed to examine the personal experiences of people who had been through the antenatal screening process. The Sickle Cell Society and the UK Thalassaemia Society were commissioned to carry out this research, which took the form of a series of interviews with women or couples who volunteered to share their experiences.
The interviews with women and couples at risk of having a child affected by thalassemia were carried out by UKTS National Coordinator Elaine Miller.
A personal thank you from Elaine Miller:
I would like to thank the volunteers who came forward to share their memories of what were sometimes distressing and difficult times in their lives. Without your participation we would never have obtained such rich evidence; which clearly illustrates not only the complexity and sensitivity of the decisions faced by couples at risk but the difficulty of the task faced by health care professionals trying to meet a very tight deadline. Your stories will help to educate other parents and health care professionals at all levels. Thank you for your courage, your honesty, and for welcoming me into your homes.
Elaine Miller | National Coordinator
UK Thalassaemia Society