Interview 17
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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.
She knew she was a beta thalassaemia carrier but has been told she needs to be tested in every pregnancy - which has made her both anxious and annoyed. (Read by an actor.)
She knew she was a beta thalassaemia carrier but has been told she needs to be tested in every pregnancy - which has made her both anxious and annoyed. (Read by an actor.)
Video and audio clips read by an actor.
When I fell pregnant with my first child, they insisted that I have this thalassaemia test done again and I'm telling them, “I don't have it.” And then they're sending me all this information through the post, and it's really quite confusing information they're sending out in the post, as well - lots of these leaflets, and really quite scary leaflets as well, you know, that are making you feel really threatened and really vulnerable. And I just read through it and I'm getting really, really angry with them, and cross, about “Why are you sending me this information? I've just found out I'm pregnant and you're making me worry unnecessarily, and I know I don't have it.” But they insisted I was tested again and then they found out it was positive.
But it just seemed like a long-winded process where people keep asking you about it and keep going again. And then recently I was pregnant again, and my doctors had changed now, and I got a very funny phone call from my doctor's receptionist saying, “you have to come in and you have to have another blood test.” And I says to her, “Why?” “Because the doctor's not sure whether there's something wrong with your blood, or it's because of your ethnic origin.” And I'm going, “I know exactly what it is.” And I just started to laugh, really. So I says, “No, I'm not coming.” “No, you have to come.” I says, “No, I'm not coming. I have the thalassaemia trait, end of story.” “No, you have to come.” This is just recently, like 2005. I'm talking about August 2005. And I says, “I'm not coming. I know what's wrong with my blood. And I'm not coming.” “You have to come in. You have to come in. The doctor has asked me to ring you. You have to come. You have to have this test done immediately on you.”
Because when they had my blood tests done, they must have found out that I was anaemic. And that was obviously due to the trait as well. So I just gave up in the end and I have to go and have this test done. And I'm getting really cross with her. I says, “Why don't you just look on the computer and it'll tell you I've got the thalassaemia trait?” “Well, it doesn't say it on the computer that you've got it or not. They must have missed it out when they were transferring all the notes over to the computer.” And I'm just thinking, “You lot are great,” you know? “Really, really great.”
Footnote - there is no need for the carrier screening test to be repeated if there is a valid record of a previous test result.
She asked for screening when she got engaged. She knew there was beta thalassaemia on her father's side of the family. She was upset to discover later that she had already been tested as a child. (Read by actor.)
She asked for screening when she got engaged. She knew there was beta thalassaemia on her father's side of the family. She was upset to discover later that she had already been tested as a child. (Read by actor.)
Video and audio clips read by an actor.
I think I originally found out I was a carrier about 9 to 10 years ago. One of my friends had recently got married and she was a carrier, and she'd got married abroad and she'd found out that her husband was also a carrier. And then one of my friends was doing some research on it as well, on thalassaemia. So I knew quite a bit of information about it really, just watching my friend go through it and then my other friend doing her thesis on it. So it gave me a lot of background information about the condition, really, and I knew quite a lot about it.
And I wasn't too suspicious really, because I knew that they tested women whilst they were pregnant, and I had three older sisters and they'd all had children, and they were obviously not carriers. So I just thought, “Well, I'm going to obviously be quite safe. Or it shouldn't be really a problem.”
But then I went to Pakistan and I got engaged to one of my first cousins. And then I was just thinking about it and I knew from my father's side of the family lots of his cousins had the thalassaemia trait, and having [thalassaemia] major. So I thought that maybe I should have it tested really. So I went to see my doctor, and I asked him, you know, to have this test done, and he was quite funny with me really, because he said to me, “You're just being very silly, really, there's no need for you to worry,” and just sort of like shrugged me away. But I insisted and he did admittedly have the test done for me.
And then he told me I wasn't a carrier. So I was quite happy with that, until one day, just about a month later, I was seeing the nurse for some reason and I'd taken my notes with me upstairs and I was sat there looking through them and discovered I was a carrier.
But he'd told you you weren't?
Yeah. And not only that, it had also come in whilst I was reading my notes that they knew I was a carrier since I was about 10 years old. Because they'd done some blood tests on me - I don't know why - when I was about 10 years old, and from those blood tests it'd shown that I'd had the thalassaemia trait. So it wasn't just once that he'd not told me, but in the past it'd been written twice before that I was a carrier when I've had, you know, previous tests done.
So I was quite upset, and I was quite angry as well. And I had a long-winded argument with my doctor who was admitting that he had told me, and I was insisting that he hadn't told me. So it wasn't something that I was going to just, you know, forget that I didn't have it. So that's the point at which I found out I had this condition.
She told her fiancé when she discovered she was a beta thalassaemia carrier, but they found it difficult to get him tested in Pakistan. (Read by an actor.)
She told her fiancé when she discovered she was a beta thalassaemia carrier, but they found it difficult to get him tested in Pakistan. (Read by an actor.)
Video and audio clips read by an actor.
So I went over to Pakistan again and I got married. And it was quite difficult, because I did explain to my husband what it was about and everything, because I didn't want to keep him in the dark. So I explained to him before we got married exactly what the condition was. And, you know, he was still OK about it. And we tried to have him tested over there but not - everybody we came in contact with just didn't realise what it was about, really, and we couldn't have a test done.
So as soon as he came over to England we had him tested and he found out he was negative so we were really quite reassured by that and we were quite happy. We weren't planning to have children at the time. We were just thinking to, you know, “Let's just make sure he's OK, really.” And you know, thankfully it was negative.
They were told her husband had to be tested again in another pregnancy. He went to see the nurse but refused to have the test. (Read by an actor.)
They were told her husband had to be tested again in another pregnancy. He went to see the nurse but refused to have the test. (Read by an actor.)
Video and audio clips read by an actor.
So the next thing is, you know, “Your husband's got to be tested again”, and this is really funny now. My husband goes, “I'm not getting tested.” And I says, “ You are getting tested.” And I'm just laughing at this, and I says, “You know what? If I have to have the needles all the time, I can't see way you shouldn't have them.” So I'm pushing him to go for this blood test. [laughs] “No, no, no.” So the nurse has rung him again at home. “You need to come in for this blood test.” And I'm just laughing and I'm going, “Okay, you need to go in for this blood test.” He's going, “I'm not going for the blood test. Tell them to look on my records. I don't have it.”
So he said this to the receptionist. And she looked on his records and she goes, “It doesn't mention anything about you having the test before, or if you have it or you don't have it.” So he's going, “Okay.”
So he goes in to see the nurse now. And whilst he's sat there for the nurse and she's getting all his things ready, yeah? He tells me when he comes home, he says, “She's getting all the stuff ready and I says to her, I crossed my arms and says, 'I'm not having it done'.” And I just started to laugh at him, and I says, “Why didn't you just have it done? Why are you so soft?” And now I'm just saying this to him, “Why are you so soft? Why don't you just have it done? Look at my arms, they're blue. How come you don't get it done?” And he goes, “I'm not having it done. I says to her, 'I don't have it. I've had the test twice before. I'm not having it again'.”
And the nurse understands it, and she says to him, “You know, I don't think you should have it done again. You know you haven't got it. It's not like you're going to catch it now, are you?” So, you know, she says this to him as well, so she didn't do the test on him. Really.
Beta thalassaemia major is a very serious condition, and she would advise parents to think about screening before they have children. (Read by an actor.)
Beta thalassaemia major is a very serious condition, and she would advise parents to think about screening before they have children. (Read by an actor.)
Video and audio clips read by an actor.
Are you glad that you found out, or do you sometimes wish you hadn't?
No, I'm really glad that I did know. And I'm really glad I found out before I was married. Because I think it was you know, equal responsibility then, really, and the burden wasn't on me, that I knew and I didn't tell him. Because it's something that would have affected us both, really, afterwards.
OK. Would you think other parents should go for screening?
I would advise them to go for the screening, really. Simply because I have seen the impact thalassaemia can have on families themselves, really. I know I don't have it myself, but one of our close friends did have it and the impact - and the impact it's still having on their family as well - is quite large. And it's not a small thing, and it's something that affects them throughout their lives. And, you know, thalassaemia major, you know, I think it is a major condition, really, that people should really think about before they have children and should definitely have screening, really.
They asked a doctor in Pakistan about beta thalassaemia carrier screening for her partner but he did not seem to know about the condition. (Read by an actor.)
They asked a doctor in Pakistan about beta thalassaemia carrier screening for her partner but he did not seem to know about the condition. (Read by an actor.)
Video and audio clips read by an actor.
He did try and have a test there [in Pakistan], and the doctor I remember saying to him, “You're fine.” And I said to him, “Did you do the thalassaemia test, though?” And he says, “No, I did that other test, and he doesn't seem to be, his blood count was fine so he's OK.” So I was like, “What's it got to do with the blood count?” And they just didn't know. I think they just didn't know.
She can't see why she should keep a card with her saying she is a carrier. (Read by an actor.)
She can't see why she should keep a card with her saying she is a carrier. (Read by an actor.)
Video and audio clips read by an actor.
I get a card every so often, to carry with me, to say that I have it, that I chuck in the bin every so often it comes. Because they don't believe it, what's the point in carrying it around with you? And even if you do carry it around with you what, I don't understand what for? It's not going to make any difference, really. If I'm in an accident, they says to you, “Carry it around with you at all times, it's required.” Why? If I have an accident who needs to know that I've got the thalassaemia trait? If I'm in A&E they don't really need to know I've got the trait, to be honest with you.
Footnote' Although being a carrier does not generally affect your health, beta thalassaemia carriers may become more tired and anaemic than people who are not carriers, but they need a special serum ferritin test to determine their iron levels, before any iron is prescribed. If a doctor does not know that a person is a beta thalassaemia carrier they could prescribe iron medicines which, in the long run, could do more harm than good. It is therefore useful to have a card to show to health professionals stating that the person is a carrier.
Professional learning: She got a letter on the Saturday telling her the counsellor was coming on the Monday. She couldn't contact the counsellor to tell her she'd be out at work. (Read by an actor.)
Professional learning: She got a letter on the Saturday telling her the counsellor was coming on the Monday. She couldn't contact the counsellor to tell her she'd be out at work. (Read by an actor.)
Video and audio clips read by an actor.
And then when we had my second child it came up again, and somebody wanted to come and see me, and she left me a letter. I got a letter on Saturday morning saying she's coming on Monday. And I'm getting really cross thinking, you know, “Don't I have a job to go to? Don't I have anything to do that you're coming on Monday? Obviously I must be not doing anything at all, really, and I'm free.” So I rang her up to cancel and she wasn't there. So she turned up, and me being who I am I went to work and I thought, “Well, if you're going to come, tough, really. You know, you should have told me much further in advance.” So she came and then she was a bit annoyed that I wasn't at home. So I did explain to her, you know, “You can't send me a letter on Saturday saying you're coming on Monday and expect me to be there for you.”
So she sort of understood. And I says to her, “Anyway, my husband's not going to be tested again. So please don't even go down that line.” And she was like, “Oh, OK then, but we have to do this and that and the other.” And I did understand, because women have different partners and that, and then maybe, you know, I had a different partner and he could be. But, you know, I explained to her, “Look,” so it's OK.
Professional learning: When her second baby was born, she felt the consultant paediatrician talked to her as if she didn't know anything about being a beta thalassaemia carrier. (Read by an actor.)
Professional learning: When her second baby was born, she felt the consultant paediatrician talked to her as if she didn't know anything about being a beta thalassaemia carrier. (Read by an actor.)
Video and audio clips read by an actor.
When I had my first one, they just weren't concerned at all in the hospital about it. When I had my second child, one of the paediatricians came over to see me and says, “You know you have the thalassaemia trait and we're not sure about your child.” So I looked at him and I went, “Well, he's all right, he's not going to have it major, is he, really?” And he just looked at me and went, “Hmm, but he might have the trait.” And I went, “Hmm, he might do.” [Laughs]. Like this. And he was like, they just come across to you, all the professionals at the hospital like you don't know anything, you know, and I don't know whether it's because I'm an Asian woman or what, but I must be really, really dumb to some extent, really. Sometimes I think that people just think I must have 'Stupid' written all across my forehead, because of the way they treat you. Unless you put an accent on and then try and talk really posh to them, then you get a bit of a different response. But sometimes there really do treat you like you're stupid and this doctor was in, then he says, “Well don't worry about it. When he's older you can have him tested and see if he's got it or not.” And I says to him, “Thank you, we will do.” Really, honestly.
And do you know what's the funny thing, he was an Indian paediatrician as well. He's an Asian doctor. You know? And they had to ask him, and he especially came over from one of the other wards to see us. He wasn't even on the antenatal ward. He came over from the other ward to see us.
Professional learning: There should be better information for staff about who has been tested already and what their results are. Asking people to be screened again creates anxiety and is inefficient. (Read by an actor.)
Professional learning: There should be better information for staff about who has been tested already and what their results are. Asking people to be screened again creates anxiety and is inefficient. (Read by an actor.)
Video and audio clips read by an actor.
I think that's what really worries me, when they keep wanting to have it done again and again. And I know it's something you can't catch, but with them saying, “Can we have it done again? Can you do it again?” you just think, “Well, have you missed it the first time round that you want him tested again?” And I think that's where the anxiety lies, really.
So basically I would say that, you know, they need to just look at it, and try and reassure patients rather than having them tested and tested and tested over again. And try and keep one database where they can all access it, really. I mean, if it's on the NHS they should all be accessing the same register, really, and finding out if you have it or not. And when a woman's found out she's pregnant, yes, do ask her if she would like her partner tested, but do you have the same partner or is it a different partner? That question isn't asked. It's, “Let's just get your partner tested.” Why aren't you asking them if it's the same one or a different partner? And if it is a different one then, yes, let him be tested but if it's the same one as before then there's no need to, really. It's a waste of resources as well.