Screening for sickle cell and beta thalassaemia

Mother' Don't drop a letter in the post as first contact. I know you're a number really to the NHS, because they don't know individual cases. But that was, that was too much shock, a) because you think there's something wrong with your child. And you mention blood and you get panicky. It's not like a, 'Well, we think your baby's got a blocked ear.' And especially with her having jaundice as well, it was a bit of a shock. And then there's, there must be something better than highlighting a leaflet. I appreciate that - I mean we were very, very well looked after, very well looked after-

Father' Mm, yeah.

Mother' - with everything that had gone on, and I do appreciate hospitals are busy and understaffed. And admin departments are all the same in every company, every office, really. But I don't think as a first point of contact about something that not everybody does know about, whether they are of black origin or not, they might not necessarily know about it, but that was a bad point of contact. I would, it would have been easier if perhaps an appointment had been made through out doctor's.

Do you think you would still have had the same sort of worry, though? Or what, I mean if somebody had said, 'We've made an appointment at your doctor's but we're not telling you what it's for' perhaps that would have been even more...?

Mother' Oh, no, I think if - no. I think if we'd have had, if we'd have been told still, 'Your baby has abnormal haemoglobins' a little bit more of a description. Because all there was on this leaflet was a small paragraph about sickle cell.

Father' If you got somebody on the, if you was one-to-one on the phone and somebody was to turn around and tell you, they could reassure you on the phone and say, 'Look, you know, there's nothing to worry about.' But all we got was the highlighted, and of course panicking, especially with the wife's work colleague. The first thing that races through your head is, you know, 'We've got a small child here who could be in hospital in three months for a, you know, a change of blood. Or she could be in' - you know, we didn't know how serious an ailment - if an ailment - she'd got, and for somebody, you know, at least you could get reassurance down the phone.

Mother' It could have been the receptionist at the doctor's that phoned to make the appointment and to say, 'We've had your baby's heel prick test back. There is some abnormalities with it. We can't be a hundred per cent sure on what they are yet, but they're looking to be sickle cell.' They could have asked an - I don't know if you can, but they could have asked an ethnic question. And sort of, I don't know, if they'd have, if somebody had have tried to put your mind at rest, 'We don't know if. . .' I think if - I would, I don't know the percentages, but I would say it's more likely if they know that the mum and dad at that time are white, it's very, very, very unlikely that the baby is, has got the disease. So perhaps a nurse at the - or perhaps even your own doctor, I don't know. I know everybody is busy but I think if they'd have, we'd have had that rather than just a letter and a leaflet dropped through the door and waiting for somebody to phone us.

Footnote' only trained health care professionals should give results.
 

Father' I think it's always better to have, as you say, have a phone call and have someone talk to you, rather than have a letter, an open letter and think, 'Oof. What's this all about?' Which is, you know, the situation that we found ourselves in for the first, for the first 24 hours, and then waiting for the results and whatever. But the most important thing for us was actually speaking with somebody, and having somebody explain everything to us, you know? So. And maybe with it being more of a foreign, a foreign disease and perhaps it's with foreign people, it might be easier to have translators. Because my wife didn't really understand to a great degree, and obviously other people find the same situation. That might be a good thing.

Mm. So they haven't got any information in Thai?

Father' Hmm. The midwife was very, very good. She went onto a website. I mean, we haven't , we're not e-mail or website friendly, but the midwife got us some information off the Internet in Thai, which has helped my wife. 

Mother' Mmm.

Father' But we've asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.