‘Sickle Cell and Thalassemia Screening – What Parents Think’

Parent’s Stories’ is a new report that has been launched containing experiences from parents of African, Caribbean, Middle-Eastern, Asian and Mediterranean origin who have been through the United Kingdom’s National Health Service (NHS) Sickle Cell and Thalassemia Screening Program and who were at increased risk of having a baby with either sickle cell or Thalassemia, two serious genetically inherited blood conditions. The report stems from a successful collaborative project between the Screening Program and two patient representative organizations – the Sickle Cell Society (SCS) and United Kingdom Thalassemia Society (UKTS). The project aimed to determine any barriers affecting the timeliness of the offer of screening and prenatal diagnosis (PND) to couples and recommend ways of improving screening services.  As part of the project,  ‘at –risk’ couples who each carried a gene for sickle cell or Thalassemia who had been through antenatal screening within the last five years were interviewed and their shared stories made up the rich evidence contained in the ‘Parent Stories’.
Some Key Points that emerged:
  • Most women had told their doctor (GP) about their pregnancy early on and already knew their sickle cell or Thalassemia status before becoming pregnant.
 
  • Parents said some healthcare professionals (including some GPs) did not have much knowledge of the conditions or the screening pathway and did not recognize the need for prompt referral to counseling and PND. Parents wanted prompt referral or ‘self-referral’ to specialist nurses and midwives at the Sickle Cell and Thalassemia Centers as from their experience this speed things up.
 
  • Parents also wanted to meet individuals who were living successfully with sickle cell or Thalassemia and to be put in touch with patient organizations who could find someone in the community to support them.
 
What Happens Next?
These parent stories are an invaluable resource for people commissioning services and working in the Screening Program and have contributed to a report with recommendations for community organizations, the public and screening service providers.
The full ‘Parent Stories’ report is available at:
 
For hard copies please email: info@sicklecellsociety.org