Interview 01
More about me...
The couple were surprised to discover she was a carrier, as there was no history of sickle cell in her family. He was happy to go for screening because it was part of antenatal care, but felt he would not otherwise have thought of going because he had always been healthy and strong. He has learnt more now about the condition and how carriers are not affected by the condition and have no symptoms.
The information they were given at the counselling appointment has given him a more positive view of sickle cell disorders than the information he had heard about it in Africa, and about the medical support available for people who have a sickle cell disorder. Even if his child were affected, he would still want to go ahead with the pregnancy and give his child the best possible life.
His partner and he had screening in pregnancy because they thought it was routine and just something everyone did.
His partner and he had screening in pregnancy because they thought it was routine and just something everyone did.
I'm interested in sort of what made you both willing to have screening in the first place. Was it something you hadn't thought about at all and it just seemed like everybody did it?
Well, I know that is the norm in this country, that once you are pregnant, all pregnant women have to take the screening. So, well, when her GP actually said she was going to take the test this day or that day, I didn't think of even saying, 'Oh no, don't go.' It's, I think it's I took it as normal, you know, a normal thing. So I never thought of not going. Never. Yeah. I never thought of it. I think it's a normal, normal thing. But to tell me to go for the screening without the pregnancy, then I don't think I would have gone, because I always think I'm strong, I'm not sick. I don't even know my GP, after four years of being in this country. I've got a GP. I know his name, but I haven't seen him personally, because I hardly fall sick. I'm always there. So to tell me, 'Go and take the tests', I don't think I would have gone. But because of the pregnancy, I know it's a general phenomenon, so she has to go, and that's it.
Did she ever think of saying no, or -?
No, she didn't. She didn't, because she just went, yeah.
So that was the main thing that made you both - it was just the fact that it was a normal part of care?
Yeah.
Footnote - often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested.
He was not really worried once he understood that being a carrier does not affect your own health.
He was not really worried once he understood that being a carrier does not affect your own health.
Well I'm that kind of open-minded person, basically. I had, I didn't have much information about sickle cells anyway, because - well, I thought it's, I've heard some myths about it, anyway, that 'Oh, people who have sickle cells are so thin and stuff like that, lean, and they get sick every now and then.' But I, for some reason I've never read about it myself, so I thought it was - I didn't really know what it was, really. But it had some - the letter had some documents, you know, with it, so I read it, and then it gave me that kind of 'It doesn't really affect your general health', and stuff like that, so I was a bit comfortable with it.
So we went for - and then they said about, they set the date when we had to come for the counselling and stuff like that. So, and basically... So before then, I thought it was a serious illness, or some kind of thing, but it happened not to be like that anyway, so'
You mean if you're discovered to be a carrier?
Yeah - if you're discovered to be a carrier it doesn't really, you know, affect your general health anyway, yeah.
Was it a shock, when you got the letter - it came in a letter did it?
Yeah, it did.
And was that a shock to get those results?
I wouldn't say a shock, but I- well, I didn't expect it anyway so' Well I can't really describe it. It wasn't really a shock. Somehow it was a shock, because I thought, you know, our health is okay. We don't have such kind of, you know, things. And so it wasn't really a big deal, anyway, yeah.
So you went along to the counselling not particularly worried or anxious?
No, no, not at all. I wasn't really worried, because they did explain a little bit about how it is, and it wasn't, you know, a major thing, so I wasn't really worried. And so we went for the counselling and I wasn't really worried.
Footnote - people often need help in understanding the difference between being a carrier, which is not an illness and does not affect your health, and having the condition.
People have different views, but screening helps you be prepared, even if you would not end a pregnancy.
People have different views, but screening helps you be prepared, even if you would not end a pregnancy.
Some people say they don't want to have screening because they don't want to know if there's a problem with their baby. Either because they know they would never do anything about it, like you're saying, or because they don't want the anxiety during pregnancy, of knowing that something may be wrong. Does that worry you, that idea that you've then got the rest of the pregnancy to worry?
Well, people have different, you know, opinions about certain things. Well it's a very difficult question. But I don't, basically, I think - I'm still not worried, basically, about the pregnancy. I'm not. Because - it's very difficult, basically, it is. On the whole it doesn't really affect me, or affect us in any way. It doesn't. Because at the end of the day whether you take the screening or not, whatever is there is there. So I think taking it is better. It gives you that kind of, an idea of what, what might happen to the baby, and then you prepare for that, rather than - you know, if, if you had actually taken it, they might, they could have, maybe there are some diseases or some sicknesses they could have actually, you know, do something about it.
So I think it's a good idea, taking it before, before birth, rather than after birth, because maybe it might be too late taking it after birth. So I - but that's what I'm saying. People are all so different. They might, some people obviously go through the anxiety as you've just said. So they think they cannot take it, so they have to do it after birth. So that kind of - some people are different. But to me, I think to take it before birth is fine. It's a good idea.
They have not told their family yet - they feel being a carrier is not something to worry about too much.
They have not told their family yet - they feel being a carrier is not something to worry about too much.
Had your wife ever had any contact with anyone with sickle cell, or known anybody with it?
That is in terms of family, or friend? No, I don't think so. No, I don't think. Because she didn't even know that she's got that kind of traces in her blood, basically. She didn't know. So up to now she doesn't know whether the mum was the carrier, or the dad. We still have no idea about that.
Does she have brothers and sisters?
Yeah, she's got brothers and sisters, but I think maybe later - we've still got, we might tell them to, to take the test to see whether any of them has got the traces or something of that nature.
So at the moment you haven't told anybody on her side?
No we haven't, we haven't. We haven't told anyone.
Was there a particular reason for not telling people?
It just hasn't, it hasn't actually occurred to us, basically, because, I think mainly because we don't see it as a disease, you know. So we're just taking it as normal for, for - we're just taking it as normal. Or it's just slipped our mind. That's it, I think so.
But you probably will tell them at some point?
Yeah. We're going to tell them, basically. We'll tell them to, to take the test, if there's a chance for them to do it.
Footnote - the word 'trait' has sometimes been used to describe carrier status. Sometimes it becomes confused with the word 'trace', which can give the wrong impression that it is insignificant.
All he had heard about sickle cell when he lived in Ghana was the belief that people with the condition usually die before they reach twenty-one.
All he had heard about sickle cell when he lived in Ghana was the belief that people with the condition usually die before they reach twenty-one.
I think being a carrier, because people wouldn't know that you were actually a carrier, but having a disorder - actually when I was a kid I heard, there was this myth about sickle cell and stuff like that, as I was telling you, but I never had a chance to read it myself. So I was told that one of such myths is if you have sickle cell, I think you don't, you won't grow up to about - you will not pass twenty-one years. You will die before age twenty-one. And those people used to be slim and always in pain and crying. It's like very, very, very thin. They don't eat properly and stuff like that.
So I thought it was, it was a major, you know, major kind of disease where, you know, if you have sickle cell, someone with sickle cell disorder in your family, then it's more than likely - it's more likely that you are preparing to bury your child or your son by age twenty-one. If they pass that age, then they will live. But that was the myth, basically. So I think there is a stigma about that. But I don't know much about it these days, because I spent a lot of the last five years I've been in this country, so I hardly know what is really going on, you know, in social issues, going on in Ghana.
He knew of lots of awareness-raising in London. But people still need to take responsibility to read the information available.
He knew of lots of awareness-raising in London. But people still need to take responsibility to read the information available.
I think in this country, I don't know whether lots of people know about it in this country. But I think in last, I think somewhere last week in the newspaper, the Metro newspaper, which is free, a free newspaper, there was some kind of advice about sickle cell, and all the related illness associated with it. So I think now, well, there's increased awareness of that kind of disease or disorder. So it's a good thing.
I think the media, you know, it's now coming into the media, and lots of leaflets and lots of counselling and lots of advice, all over the place. But I, so I think it's a positive thing to do that, but I don't know what they can do to improve the awareness. Maybe, I don't know whether they can do it on a television advertisement or anything of that nature. But once it's in the newspaper then it's a good thing. It's actually creating that awareness. As to whether people will read or not, it's a different thing, right? Because you might have all the information, but if you don't read it then you're not going to know.
Professional learning: He felt screening in pregnancy was just a routine part of care. He would never have thought of having screening otherwise.
Professional learning: He felt screening in pregnancy was just a routine part of care. He would never have thought of having screening otherwise.
I'm interested in sort of what, what made you both willing to have screening in the first place. Was it something you hadn't thought about at all and it just seemed like everybody did it?
Well, I know that is the norm in this country, that once you are pregnant, all pregnant women have to take the screening. So, well, when her GP actually said she was going to take the test this day or that day, I didn't think of even saying, 'Oh no, don't go.' It's, I think it's I took it as normal, you know, a normal thing. So I never thought of not going. Never. Yeah. I never thought of it. I think it's a normal, normal thing. But to tell me to go for the screening without the pregnancy, then I don't think I would have gone, because I always think I'm strong, I'm not sick. I don't even know my GP, after four years of being in this country. I've got a GP. I know his name, but I haven't seen him personally, because I hardly fall sick. I'm always there. So to tell me, 'Go and take the tests', I don't think I would have gone. But because of the pregnancy, I know it's a general phenomenon, so she has to go, and that's it.
Did she ever think of saying no, or -?
No, she didn't. She didn't, because she just went, yeah.
So that was the main thing that made you both - it was just the fact that it was a normal part of care?
Yeah.
Footnote' often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested.
Professional learning: The sickle cell counsellor explained that advances in medical care have led to improvements in survival and quality of life.
Professional learning: The sickle cell counsellor explained that advances in medical care have led to improvements in survival and quality of life.
Your particular counsellor was herself from an African background, I think. Was that important to you?
Yeah, it was, because when I said there was these kind of myths about it, and people tend to be slim and thin, and they don't eat properly and stuff like that, then she said yeah, because no increased medical attention was given, right? So, so she also had that kind of idea, because she's got the African background as well as the European. So she was able to tell that it was because there was no increased medical attention for those people involved. But over here, because of increased medical attention people don't grow that thin and stuff like that, and suffer all the time. Because if you know there's this kind of thing, then obviously medical attention is increased, so the effect is also reduced. So she was able - I think it was good she knows a lot about the condition in Africa. It was good.
Professional learning: His screening test result was delayed, so they had their counselling appointment without knowing if they were both carriers. This made it difficult to discuss their options.
Professional learning: His screening test result was delayed, so they had their counselling appointment without knowing if they were both carriers. This made it difficult to discuss their options.
Did it ever cross your mind not to have screening?
No, it didn't. It just - because in the letter, when they wrote to her, you know, they actually attached a form for me to take my blood test, well in advance, before we come for the counselling. So I took it, but for some reason it still hasn't - actually the test, the result still hasn't arrived. It hasn't come, so - by then. So the appointment date reached and we went, whilst my result wasn't still, you know, out. So we went for the counselling, you know, without still knowing my result, anyway.
That must have made it quite difficult to have a proper discussion about what you were going to do next?
Yeah, you are right, because now I don't know what, whether I'm a carrier or not. So it's still very, you know, difficult to sort of say things that I would have said if I know mine, whether I'm a carrier or not, so it's kind of a balanced decision now, to say this or that. I cannot really say some questions you might ask me.
So you went to the - or made the appointment, not feeling particularly anxious. Do you feel more anxious now?
Yeah, a little bit, because now I don't have my results so it's quite, you know, I'm in a position where I still don't know whether I am a carrier or not, and now I know if I'm a carrier then the chances of my child, you know, having it is about twenty or twenty-five per cent or so, so it's still quite balanced by it. I'm hoping that I'll, you know, I'll prove negative to it, so that the child will be sort of free, from, from the disorder. Or if - I'm not quite sure whether the child can be a carrier - if my wife is a carrier. Yeah, the child can be, but not the disorder.