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patient education

Parents’ Stories

key information

source: Sickle Cell Society

year: 2018

summary/abstract:

For couples of African, Caribbean, Middle-Eastern, Asian or Mediterranean origin who might be at increased risk of having a baby with sickle cell or thalassaemia, two serious genetically inherited blood conditions, it can be a very worrying time. England has a National Health Service Sickle Cell and Thalassaemia Screening Programme (NHSSCTSP) offering all pregnant women antenatal screening for sickle cell and thalassaemia.  If the woman is a ‘carrier’ (or ‘trait’) the baby’s biological father is invited too. 

To determine any barriers affecting the timeliness of screening and prenatal diagnosis (PND) offers and recommend ways of improving services, the Screening Programme worked jointly with the Sickle Cell Society (SCS) and UK Thalassaemia Society (UKTS) on an ‘engagement project’.  Elaine Miller of the UKTS and I conducted structured interviews with parents at risk of having a baby with sickle cell or thalassaemia, who volunteered to share their personal experiences of going through antenatal screening within the last five years.

 

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