Screening for sickle cell and beta thalassaemia

Interview 17

Age at interview: 29

Brief outline: Mother who is a beta thalassaemia carrier, and her husband is not a carrier. They have been told in several pregnancies they need to repeat the test, which has caused anxiety. Video and audio clips played by an actor.

Background: Community development worker, married to warehouse operative, with two children aged 5 and 1. Ethnic background/nationality' Pakistani.

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This mother has a family history of beta thalassaemia, and decided to have screening before she got married. Initially she was told her result was negative, but when she saw her medical notes she discovered she was a carrier and was upset to find out this way. 

When she went to Pakistan to get married she told her fianc' about the result, and they tried to arrange a test for him in Pakistan, but it was difficult to find someone who understood the condition and knew about screening. They were married anyway, and he had screening when they returned to England, which showed he was not a carrier. 

However, when she became pregnant for the first time, she was told she needed to have the test repeated, and when her results came back showing she was a carrier her husband was also told he needed to be re-tested. He was reluctant to go because he does not like needles, but in the end agreed to be re-tested. The test confirmed he was not a carrier. 

The mother was asked to go for screening again in her next two pregnancies, and both she and her husband felt quite anxious and angry at the repeated requests to go for tests. Her husband went to the surgery to have another test but in the end refused to have it. Even though they know their carrier status, it makes them feel uncertain every time they are told they need to be screened again. The mother feels there should be better co-ordination of information about test results between health professionals, and that staff should listen to patients better. She understands that some women may have changed partners between pregnancies, but when the woman is with the same partner who has already been tested this should be acknowledged.

She still believes screening is important, especially having seen the impact of beta thalassaemia major on the family of a close friend. She will advise her children to have carrier testing for themselves and their partner before they get married.


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