Screening for sickle cell and beta thalassaemia

I'm not that sad that it's only, it's like it was just a black person that came over to talk to me. It's like having other people knowing about sickle cell I think is a good idea. Because for example like, when, when she had the sickle cell, when I started going to, where I used to live in [town], where I used to live down there, the GPs in the surgery that I was with, it's only one, they had one black doctor there. And surprisingly I went into one - I went in wanting to see somebody because she had, she had like temperature and she was crying all the time. I didn't know what happened to her. I thought that she had sickle cell crisis. I had to run down to the GP with her. 

And the lady was saying, 'Oh, I don't know much about sickle cell.' I was shocked. But the black doctor they had there - so because of what she says, whenever I want to go, take her in, I will ask to see that particular doctor because he's got more information about it, he knows more about sickle cell. Because he usually say to me, 'I know more about it from back home.' Because he's from, yes, because he's from Africa as well. He's like, 'I know more about it from back home.' 

So it's, I think it's, it would be easier if they've got like other people knowing more about sickle cell, if it's not just black people that knows about it, and just Indian. Because the doctor that she had in [hospital], he was Indian doctor that she - I've never met white, I've never actually met a white doctor since I found out she had, that she had sickle cell. All the people that I meet it's like black, Asian, black, Asian, yeah. I think it would be a good idea for other people to get more experience about it. Even though now that she's like - because lately she went, she had to go to be admitted at [hospital] because she had to take, she took the pneumo-vaccine after the age two and she had a reaction, late reaction to it. So she had to be admitted. But the doctor now she's going to be seeing, when she gets back, is a white doctor. And they had like very good information. I was like, I felt so comfortable talking to them because they had like more information about it.

Yes. So it's having the information that counts?

Yeah.
 

English translation:

I didn't have enough information. Actually the midwives didn't really help me in that respect. It's much more, the woman - I don't want to name her - at the clinic, that's the service which helped me a lot, because they even said, 'If you have any questions, any problems, you can come back any time, that's why we're here.' But the midwives, no. They just, they gave me the forms to do - even when I did it for the first one, they didn't say it was about that, they didn't tell me anything.

If I can ask another question, the first time you went to the clinic when they took the blood test, did they not explain what electrophoresis was?

No. In fact the first time I was pregnant, all the tests I did, HIV, all that, they told me nothing, they just gave me the forms, they said, 'Go and do this', that's all. I didn't know what it was about - it's lucky I could read. I read the forms, I knew it was about this and this and this, but I didn't know 'sickle cell trait', 'sickle cell', what was it? I'd never heard anyone mention this name, so I didn't know what it was about.

But how would you like the system to be improved at the level of information which midwives give to everyone, and certainly to those who are potentially sickle cell carriers?

I'd really like the midwives to take time to explain to their patient, so to speak, what people can expect, for example, 'You'll have this test and this test to do, this is what happens if the tests are positive, this is what you have to do, this is what one could do. If it's negative, here's what could happen.' Then they'd take the blood test and I know what I'm expecting and I'm prepared, I know that I'm doing it for a particular reason, and if it turns out this is the result, I'm going to do this, or things like that. You're better prepared than when they send you the results and you don't know what it's about. I was shocked, really shocked.

French original:

Je n’ai pas eu assez d’informations. En fait, les sages-femmes ne m’ont pas vraiment aidé de ce côté-là. C’est beaucoup plus, la femme – je n’ai pas envie de citer le nom – mais à la clinique, c’est ce service là qui m’a beaucoup aidé, parce qu’ils m’ont dit même que si tu as des questions, des problèmes, tu peux tout le temps revenir, on est là pour ça. Voilà. Mais les sages-femmes, non. Non, ils ont juste, ils m’ont donné les formes pour faire les - quand j’ai fait ça même pour la première fois, ils ne m’ont pas dit qu’il s’agissait de ça, ils ne m’ont rien dit.

Si je peux te poser encore une question. Est-ce que c’était la première fois que tu as été à la clinique lorsqu’on a fait la prise de sang, on ne t’a pas expliqué que c’était l’électrophorèse?

Non. Tout, en fait, la première fois quand j’étais enceinte, tous les tests que j’ai faits, les HIV tout ça, ils ne m’ont rien dit. Ils m’ont juste donné les formes, ils m’ont dit, ‘Va faire ça’, c’est tout. J’allais faire les tests, je ne savais pas de quoi il s’agissait. Bon, moi, heureusement que je savais lire. J’ai lu les formes, je savais qu’il s’agit de ça et ça et ça, mais ‘sickle cell trait’, ‘sickle cell’ je ne savais pas, c’était quoi? Parce que je n’avais jamais entendu parler de ce nom, donc je ne savais pas ce que c’était.

Mais, comment est-ce que tu veux qu’on améliore le système au niveau des informations que les sages-femmes donnent à tout le monde et certainement à ceux qui ont le potentiel d’être porteuses de l’anémie de faucille?

J’aimerais bien que, qu’on puisse, que les sages-femmes puissent prendre leur temps à expliquer à leur, je peux dire, ‘patiente’ ce qu’ils ont à faire face. Par exemple ‘Tu auras tel test et tel test à passer, voilà si les tests sont positifs voilà ce que tu dois faire, voilà ce qu’on pourra faire. Si c’est négatif, voilà comment ça peut se passer.’ Là, au moins, on va faire la prise de sang et je sais à quoi je m’attends et je suis préparée, je sais que je fais ça pour arriver à tel but, et au cas où c’est ceci, je vais faire ceci ou des choses comme ça. On est mieux préparé, que lorsqu’on t’envoie des résultats et que tu ne sais pas de quoi il s’agit. J’étais bouleversée, j’étais vraiment bouleversée.

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.