User Consultation on Screening for Sickle Cell and Thalassaemia
The Sickle Cell and Thalassaemia Societies in partnership with the NHS Sickle Cell and Thalassaemia Screening Programme are looking for people to participate in a project investigating the experiences of couples who have gone through the antenatal sickle cell or thalassaemia screening process. This screening in pregnancy involves a blood test to find out if you (and in some cases the baby’s father) carry a gene for sickle cell or thalassaemia. The main reason for screening is to enable parents-to-be to make informed choices about their expected baby based on information about the baby’s risk of inheriting sickle cell or thalassaemia. In order to improve screening services nationally we are particularly interested in finding out the following:
• At what stage in the pregnancy the offer of screening was made
• For a couple who both carry a gene for sickle cell or thalassaemia and are therefore at risk of having an affected baby, at what stage was the offer of a diagnostic test made to determine whether the unborn baby was affected. This test is known as prenatal diagnosis (PND)
• The level of support offered at various stages of the screening process
We would like to conduct face-to-face interviews with women who have been pregnant within the last 5 years and who fall within any of the following categories:
• Those who have accepted or declined prenatal diagnosis (PND)
• Those who know that they and the baby’s father are both carriers of a gene for sickle cell or thalassaemia
• Those who know that only they carry a gene for sickle cell or thalassaemia

We are looking to interview people from East London and the West Midlands only. The interviews will take approximately one hour and can take place on a date, time and venue convenient for you. In gratitude we will give participants a £50 gift voucher plus public transport costs if applicable. All data collected will be confidential and only the interviewer will know the identity of participants.

If you (or anyone you know) would like to participate, please contact Iyamide Thomas:
Iyamide Thomas (Ms)
Sickle Cell Society