The NHS Sickle Cell and Thalassaemia (SCT) Screening Programme screens pregnant women to find out if they are at risk of having a baby with sickle cell disease or thalassaemia major (serious inherited blood conditions).
Early access to the sickle cell and thalassaemia screening offer of prenatal diagnosis (PND) is important in giving time to women and couples identified as being at risk to consider their options. PND finds out for certain whether or not a baby has one of the 2 serious inherited blood conditions.
Last year, PHE Screening published:
- real life parents’ stories of the impact on people’s lives when early access to screening and the early offer of PND does not meet the programme’s standards
- new guidelines for counselling and referral for prenatal diagnosis with the aim of improving early access and reducing variation across the country
What Princess Royal University Hospital has done
Louise is the antenatal and newborn screening coordinator at Princess Royal University Hospital, part of King’s College Hospital NHS Foundation Trust in Kent, where a very simple change seems to be having a big impact.
Many of the women who refer to the maternity service do so via the trust’s online self-referral form. Once completed, this is automatically submitted to the trust’s antenatal booking centre (ABC) email account.
The ABC team triages all GP and self-referrals and forwards any relevant information to the screening team. This enables a direct fast referral to specialist services in pregnancy, instead of waiting for women to attend their booking appointment and the midwife referring the woman to the screening team.
In May 2018, the question ‘Do you know if you are a sickle cell or thalassaemia carrier?’ was added to the trust’s online self-referral form and it seems to be transforming early access to counselling in pregnancy.
To date, 18 of the 26 women who have screened positive for sickle cell and thalassaemia have been identified from this referral form. This has enabled the screening team to offer the same test to the baby’s father and complete counselling even before the woman has been booked for pregnancy care.
This means that women and couples have time to consider their options, including whether to accept PND. If their baby is found to be affected, they can then find out about caring for a baby with sickle cell disease or thalassaemia major or end the pregnancy.
We are keen to learn about improvements to local screening services like this. If you have changes you would like to share, please let us know by contacting the helpdesk.