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Screening for sickle cell and beta thalassaemia

Communicating results

People's first reaction when they get a positive carrier screening result is often a mixture of shock, anxiety and uncertainty. They may be confused about what being a carrier means and worried about the implications for their baby. (See also sections on 'Feelings about the results', 'Newborn screening - the effect on parents', 'Timing and delay' and 'Explaining genetics and risk'). 

Parents acknowledged that there is no easy way to break this news, but identified some things which could help. In particular people felt it was important to be able to speak to someone directly as soon as possible. Getting results in a letter was difficult for many people to deal with, especially if people had not really understood that they were being screened. Improving information at the consent stage will help, but it may still be difficult for people to absorb when they have just given birth and are focussed on the new baby.

 

Professional learning: Getting results by telephone rather than a letter would still have been a...

Professional learning: Getting results by telephone rather than a letter would still have been a...

Age at interview: 32
Sex: Female
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What, is there anything they could have done differently, instead of sending you that letter, or the way that they worded it, that would have been better?

[Sighs] I don't know, I don't know what they - I think if I'd have understood it more before it happened, I wouldn't have been so worried. But because I've not had to look back in the family and worry about sickle cell, it was a case of, 'It's not in the family. Don't worry about it.' And I suppose I'd got that approach that my dad had got really, but now I know it's in the family, it's a case of, 'No, you do have to worry about it, because it can be passed down.' 

I mean like if they'd phoned you, would that have been better rather than sending it in a letter?

I don't know. I suppose either way it's just the same, isn't it? It's that, 'Whoa! What did you just...?' It's like I've just read it or you've just said it. ' What did you just say?' Or 'What have I just read?' Either way it's just as bad I think. But I suppose if you've got that person on the line, you can actually ask questions straightaway. Whereas I had to ring up. If she hadn't have been in the office I wouldn't have been able to speak to her straightaway. But I was fortunate that she was in the office and I could speak to her straightaway. But some people might not be that fortunate. And like I say it put my mind at ease that day. So I suppose yeah, if they'd have rung first I probably would've not been so worried. 
 
 

Professional learning: They received newborn screening results in a letter with a leaflet in...

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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.
 

 

Professional learning: When they opened the letter telling her she was a carrier it was too late...

Professional learning: When they opened the letter telling her she was a carrier it was too late...

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Well, the thing is that the first, literally the first thing we did - and I didn't open this letter from the haemoglobinopathy nurse until about half past nine at night - we'd worked late or we'd been out and we came home and suddenly I thought, 'Oh, there's this letter.' And the letter was sent to me by my married name, and I use my maiden name, so I knew it was something connected with the, with the pregnancy. And I knew that obviously it was about the time we should be getting the test results. So I sort of opened it with a certain amount of trepidation. 

And then what can you do at half past nine at night? Well, the first thing you do is hit the Internet. And the - I think we went to the, straight away to the Thalassaemia Society website. And there's, if you let, allow yourself to read and link up as many times as you can, you can actually find some pretty disturbing information. 

And we, it was such a shock, that I think we immediately started looking at the, on the sort of blacker side of the picture. And initially you may not appreciate the distinction between how the condition is controlled and can be controlled in the UK as opposed to, you know, the lack of medication and transfusion facilities in the Third World for example. And I think we, all we managed to do in the sort of twelve hours before the nurse turned up was scare ourselves stupid that it was, you know, if the child had the condition it was a very bleak future. And, you know, you can, you get carried away and you can look at things like life expectancy and, and things like that. And you might not necessarily - and I'm not talking about any particular website - but you might not be looking at the most up-to-date statistics or the best statistics. 

And at times when you read personal stories you can read some very inspiring ones. And certainly you made contact with somebody by email who was, who was very helpful and very supportive, who was an adult with thalassaemia major. And he, we got quite a lot of comfort from him in a, sort of over the sort of following few weeks et cetera. But you can also read some - for want of a better word - horror stories as well, which is not necessarily the thing that you should be doing when, when you haven't even got a diagnosis or a certainty. 
 
 

Professional learning: They really needed to talk to someone directly about their results, and...

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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.
 

Several people had been unsure what some of the terms meant in the letter they received, such as 'abnormal haemoglobins'. One mother said that because she has dyslexia she finds reading long words much more difficult than visual information or listening to someone.

 

Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have...

Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have...

Age at interview: 32
Sex: Female
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As I say, I've just - new baby, I haven't had time and I should have had, I should have looked a bit more. It's just I've had so many things going on just lately, but I will get time to sit down and have a good, good read and know a lot, lot more about it. Because I do want to know a lot more about it. Because I find it difficult to read as well, and that's part of it. I think that's part of it. It's like it's a big chore to me, because of being dyslexic. I've, big words I don't understand so, I'll be honest, it's better if someone spoke to me and told me it. Because I'd understand a lot more if someone spoke to me than reading it. Because it's just gobbledygook, goes straight over your head, doesn't it? If someone's explaining it to you, say, and it's like if you don't understand a word you can say, 'Look, I'm sorry, I don't understand that word. Please explain it to me in a word, in a phrase that I can understand.' So.

That's quite an important thought, actually, for how people present information?

Hmm.

I mean, like something like a DVD or something with someone talking '

Yeah.

'about it might have been more helpful than'

Yeah.

'a leaflet. 

Because you do, you get words and it's like, 'Well, what's that? What does that mean?' It's like when it come through, 'haemoglobins', I was like, 'What's a haemoglobin?' And then of course I had to go through the leaflet to find out what a haemoglobin was. And it was like, 'Oh.' But it's like you say, big words to me don't mean nothing. So, if someone can explain it to me then I'll understand a lot more than trying to read a book.

Are there any other things that, from your experiences, that you'd want to say to health professionals or the health service about how, you know, the information you've had and the care you've had?

Just a case of don't write a letter like I got, [laughs] because no matter how much they try and put it in, 'Don't worry', a parent is going to worry, especially when you've got a new baby in the house. You're going to worry. Don't do it like that. You've got to find another way of trying to explain to a parent without frightening them. I know it's only a trait but you still worry. If your any parent, you're going to worry. It's your child's health. 
 

Another mother was initially puzzled to be told she was a carrier of haemoglobin D Punjab. She needed to sit down face-to-face with a counsellor who could explain to her in Urdu. 'I said that I'm not a Punjabi, and she said “It's not related to Punjab…It's just that this haemoglobin has been given this name, so anyone can have it”.'

One mother felt the terms used to inform her of the results were too blunt. She had in fact received a phone call rather than a letter, but was so shocked she dropped the phone. Like the couple in Interview 26, she said she would have preferred to be told to come down to the surgery to be told about the results.

 

Professional learning: Rather than getting results in a letter or a phone call, she would have...

Professional learning: Rather than getting results in a letter or a phone call, she would have...

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I think the first thing they did wrong, there was - not that they did it wrong, but I think the way it came out or the way it comes out to, to normal people like us, 'You're a sickle cell trait carrier.' I think this sounds so wrong - to me. I think there's a, there's a nicer way to put it to people. Because my mind had gone, 'Oh, I had SS', you know as in - I think there's a better way to put it to people. Don't emphasise that you're a sickle - just say you have a tendency, you know, don't - because she actually emphasised it that I was a sickle cell trait carrier. But I'm like, 'No, I'm not a sickle cell trait carrier. I'm a child of God, for Christ's sake. I carry a healthy baby.' 

So I think they should try, they should look for milder words to use. Don't, don't put your - yeah, they're entitled to their views. As I said, I respect their views. But don't, don't put it on us, as in then, 'Oh, this is what's going to happen.' No, it's not going to happen. Nobody knows tomorrow. The bible would say you shouldn't be anxious about tomorrow, because tomorrow will take care of itself. So that means God is going to take care of tomorrow. So God knows that he didn't make anybody to be sickle cell trait carriers. So I don't, I don't think they should put it on us. Look for softer ways, gentle words to use, you know? And don't make it, 'Oh, you have to come and do the screening. You have to come and do this.' No, you don't. I think they should just look for, you know, better approaches, you know? The way - I don't know. I thought I got my own harsh, you know. But anyway. Whatever.

What would, would you have maybe preferred a phone call rather than a letter or what, what would have been a better way to?

I think the letter is the worst one. You just open the letter, and you're like, 'You're a sickle cell trait carrier.' I think a phone call would've been better, not even to tell you on the phone. 'Why don't you come down to my office at two o'clock?' you know? And I get there and she's like, 'You have a tendency. This is it.' And she explains it. I'm like, 'Oh, OK.' And I'm like, 'OK, OK, that's what you think.' But I'm not going to tell you, 'That's what you think.' I'm just, 'OK, I respect that' and I leave, and I go back to pray. But not the letter, 'You're sickle cell trait carrier.' I'm like - or the phone call, 'You're sickle cell trait.' I'm like uh-uh.

Do you think that if somebody...?

Because it made me cry at first. So I can imagine all the people, how they get the news - of course they'll cry. Of course they'll feel bad, they'll feel sad, you know. It's not easy bringing, bringing a sickly child into the world. It's not, you know. Then because, then you start, you're going to start feeling bad. 'Oh, I gave it to the child.' You know, you start feeling guilty and all that. So I think there should be milder ways. There should, no, there should be softer ways, yes.

Do you think if somebody had rung you up and said you need to come down to my office in a couple of days' time, would you have started feeling anxious anyway though or?

Yes, but not in a bad way. Anything regarding my baby I will, I will go. If you call me, I will go. Because at first when I was in all the scanning I was working, but those few days I wouldn't work. I would go and do my scanning. Anything like now I have antenatal care. I will go. You don't want to miss anything that has to do with your baby. It's like a special bonding. So if she calls me, 'Oh it's regarding the baby - can you come?' Yeah, anxiety's good, but that doesn't mean it's going to be, 'Oh, maybe there's something.' Uh-uh. I've told you I'm a positive perso

However, another mother realised something must be wrong as soon as the counsellor fixed an appointment to come and see her, so it is not clear whether people would find this approach any more reassuring. (In her case, though, she already knew her baby might be affected because she had discovered in pregnancy that she was a carrier).

 

Professional learning: She knew something must be wrong because the counsellor fixed an...

Professional learning: She knew something must be wrong because the counsellor fixed an...

Age at interview: 21
Sex: Female
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Video and audio clips read by an actor.

My health visitor, she asked me if I wanted the baby to get the heel test. I said, “Yes” and she said I need to sign the form. So I signed the form and then she got it done. And then after a few weeks then they phoned me. No, no, the specialist phoned me and said she wanted to see me. But at that time I knew already, so I just guessed. I said, “Why she has to come to make an appointment to see me at home?” So I was already, I said to myself, “Well, I know. If she's coming, then my son's got sickle cell, because if he didn't they would write to me. If she's coming in person, it means he's got it”. So I was expecting it anyway.

A mother who was called for screening several times found it annoying that a home visit had been organised, to give her the results, but this had been done without asking her whether it was a convenient. She felt sometimes professionals had talked down to her and underestimated her ability to understand what it means to be a carrier.

 

Professional learning: She got a letter on the Saturday telling her the counsellor was coming on...

Professional learning: She got a letter on the Saturday telling her the counsellor was coming on...

Age at interview: 29
Sex: Female
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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...

Professional learning: When her second baby was born, she felt the consultant paediatrician...

Age at interview: 29
Sex: Female
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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.

Last reviewed December 2018.
last updated September 2015.

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