The NHS Sickle Cell and Thalassaemia (SCT) Screening Programme screens pregnant women to find out if they have a higher chance of having a baby with sickle cell disease or thalassaemia major.

Pregnant women and couples with a higher chance of having a baby with sickle cell disease or thalassaemia major can face some very difficult decisions.

These can include whether to have prenatal diagnosis (PND) to find out if a baby has one of these serious inherited blood conditions.

We worked with the NHS Sickle Cell and Thalassaemia Screening Programme to do a number of audits and parent interviews. This enabled us to better understand what women and couples need from the service. Our findings have been used to update national guidance on counselling and referral for counselling and prenatal diagnosis.

What can women and couples expect from their antenatal SCT screening service?

At risk women and couples will be:

• referred to specialist counselling at first contact with a healthcare professional and fast-tracked to PND so they have time to make informed choices
• provided with information leaflets about sickle cell disease or thalassaemia
• provided with information about PND
• provided with information about options if the baby is affected
• provided with contact details of UK patient societies for the relevant condition (Sickle Cell Society or UK Thalassaemia Society)
• provided with information about pre-implantation genetic diagnosis if they wish to have future pregnancies
• entitled to receive care and information about the relevant condition and patient society if they choose to give birth to a baby with one of the conditions

You can access the updated counselling and referral guidelines for PND on GOV.UK here: https://www.gov.uk/government/publications/handbook-for-sickle-cell-and-thalassaemia-screening