We have updated and published in accessible digital format the national NHS Sickle Cell and Thalassaemia (SCT) Screening Programme information about being a carrier of a sickle cell, thalassamia or other unusual haemoglobin gene.
These digital leaflets provide pregnant women who carry an unusual haemoglobin gene with the information they need to make choices about the next steps in their screening pathway.
They also support healthcare professionals when discussing the implications of carrier status for the:
- pregnant woman
- baby
- baby’s biological father
- wider family
There are a number of different haemoglobin conditions a baby can inherit if both their biological parents carry an unusual gene. Some conditions are more serious than others.
User research shows most women and midwives benefit from and expect digital information. It is important that healthcare professionals now make use of the updated leaflets to signpost women to the up to date, reliable information appropriate to them.
Iyamide Thomas, NHS Engagement Lead for the Sickle Cell Society, said:
These updated digital leaflets will really help parents understand the implications of their carrier status for themselves and their baby. The clear, simple language will help to reduce anxiety and enable people to make informed choices that are right for them.
Roanna Maharaj, of the UK Thalassaemia Society, said:
This accessible information, which is clear and from a reputable source, is more likely to be taken seriously and influence the father’s willingness to be tested.
There is guidance for health professionals on how to print the digital leaflets for women and family members who cannot access the internet. This will ensure that people who are not online are not disadvantaged.
Please contact the PHE Screening helpdesk if you have any feedback on the new leaflets.
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