A-Z

Screening for sickle cell and beta thalassaemia

Awareness/understanding about the conditions

Some people we talked to, especially those who had friends or family with sickle cell disorders or beta thalassaemia major, were very well-informed about the conditions. However, even people in this group reported some gaps in their knowledge. For example, a woman who herself had SC disorder said, “I didn't realise that there's actually a difference between sicklers. I didn't know there's SC [SC disorder] and SS [sickle cell anaemia] until I came to this country and I read more about it. In Nigeria all I knew was I just had sickle cell.” SC disorder is a type of sickle cell disorder which is distinct from sickle cell anaemia. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects. 

Within the UK, levels of awareness are quite high in some communities. 

 

In her area there had been an information campaign to raise awareness about beta thalassaemia....

In her area there had been an information campaign to raise awareness about beta thalassaemia....

Age at interview: 29
Sex: Female
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I think in the last, say, five years there's been a major hype about thalassaemia. And there's a lot of presentations been going on in various religious groups, where they're coming to the temples and they're coming to community groups and they're trying to send out that message to everyone' “Be aware of it.” Because my mother-in-law knew about it, because there was someone that came from the local Health Centre to the temple and raised that awareness.

And I've been talking to so many people and I mean, in any Asian community, there's so many people that have got thalassaemia. It's just so common. 

A lot of people from India or that part of the world, it's very common to have beta thalassaemia, whether it's Pakistan, India, Bangladesh. And then whereas if you're coming towards Africa it's more sickle cell anaemia. So they kind of like gave you this kind of background as well.

A Christian mother suggested that the church could play an active role in raising awareness, and a Muslim mother had heard helpful information on Radio Ramadan.

Other people we talked to, including several people from white European backgrounds, said they knew little about the conditions before they were invited for screening. Most thought it would be helpful to have more public information explaining that white people could also be affected. 

 

She did not realise white people could be affected by sickle cell or beta thalassaemia until she...

She did not realise white people could be affected by sickle cell or beta thalassaemia until she...

Age at interview: 22
Sex: Female
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Yeah I mean, when I was speaking to the lady when I had the appointment, she said that - is it Caucasians? They can get it. Because I thought it might have just been, you know, Mediterranean people and African and, you know. But she said you know, Caucasians, some of them get the, you know, condition. I was quite shocked about that really. So anyone could get it, you know?

So, important for people to know more about it?

Yeah, because if your partner's got the same thing, you're going to be in a bit of trouble, really.

What more kind of information do you think there ought to be around thalassaemia in the community? What would you like to see?

Well I was quite ignorant, because I only, as I said, I only thought it was sort of you know, black people, African and that, that had sort of like the, you know, blood disorders. But it's not. It's , you know. Anyone really, any type, religion - whatever - can, can have that. So I think it is important to, you know, get tested really. They should make a little bit more sort of, I don't know - they should sort of like say that at the start from when you're pregnant, and test you probably during the beginning of it, instead of leaving it five months.

Some people had arrived in the UK relatively recently, and described varying levels of awareness in their countries of origin which had influenced their own views. A number of people who had come from African countries said that sickle cell anaemia was widely known about, and one woman had been taught about it at school. However, several mentioned a general perception that few people with sickle cell disorders will live past their early twenties. For some people this was all they had heard about it before having screening, and they had not been aware that improvements in care have led to better quality of life and improved life expectancy for many people.

 

All he had heard about sickle cell when he lived in Ghana was the belief that people with the...

All he had heard about sickle cell when he lived in Ghana was the belief that people with the...

Age at interview: 29
Sex: Male
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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.

 

She has heard that in Nigeria people celebrate if someone with sickle cell anaemia reaches their...

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Yeah, because I've seen people with sickle cell. It's not something - even because there is no medical, there is no medicine or any way to eradicate it. People can live, like I think in Nigeria we have a club that if you've passed 30 and you're still alive then they believe you're not going to die of it. But if you're below like 20 they are still - it's like they look up to the children and will say that, 'Oh, when they're in their adult age and if at the point they're 20 and they're having crises and they don't die that means they have outgrown it or something like that.' So it's something they celebrate back home in Nigeria, it's something they celebrate. 

But it's not something if you know somebody close to you like you want to go through. It's not something you want to go through. Because if you have a child that has sickle cell, you can't hide it, you can't hide it. It's worse than, - I can hide my HIV. I'll tell who I want to tell. You can't hide it, if I'm sickle cell, I can't hide it from anybody. Because you can't hold a job, you can't be in school, there is a limit to what you can do, because you are all the time sick. And when you have crises it's the worst. You don't have crises with HIV, you don't. With sickle cell the crises, that's why I said I don't know which is worse, people having asthma having crises, than people with it.
 

Of course it is still the case that people with sickle cell anaemia may die at a young age, especially if they are living somewhere without sufficient access to care and medication. But one mother said she felt sometimes parents in Africa did not seek medical help because they assumed the child would die young anyway, so it was important to raise awareness.

 

Awareness is vital. Parents who believe a child with sickle cell will die won't seek help. [La...

Awareness is vital. Parents who believe a child with sickle cell will die won't seek help. [La...

Age at interview: 40
Sex: Female
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English translation:

Well, I think they ought to give you a bit more information from a young age, as I say, from a young age or even at school. At school you could start distributing leaflets or - I've forgotten the name. 

Pamphlets?

Yes. Pamphlets which give you a general idea, a little bit of knowledge. And then afterwards, details. They can say to you afterwards, 'You can read this book or you can go to this place to find information.' But from school onwards, because when you're at school that's when you start to have feelings, to have a boyfriend or girlfriend, and then that gives you some idea. And after school, when you go on to college, it's the same, they should reinforce that information. Because I know that if I hadn't had this child, maybe even up to this day I wouldn't know what sickle cell is. And similarly with this child, we've informed the people around us, our close family and then friends. And even up till now it's sometimes happened to me that I have to inform certain people what sickle cell is. Because people just don't know.

Do you think there is enough information for example on Internet sites?

Now, yes, here in England - in France there are still gaps. In France there are definitely still gaps. Like we thought at the start that it was something that really only affected a small minority. And even worse, in our community, when someone has it, the child is almost neglected, it must be said. Especially in Africa, they just don't think about the child. 'It's sickle cell, and if it's sickle cell that means that the child won't have a long life. So why take any interest in the child? It's true, information needs to be there, and as far as information is concerned I think, thank goodness, people are starting to have videos and all of that. But there's still a lot of work to be done at the source. And by the source I mean Africa, yes.

French original:

Moi, je crois qu’il faut donner un peu plus d’information, dès le bas-âge, comme je dis, dès le bas-âge ou même au collège.  Au collège on peut déjà commencer à distribuer des petits livrets ou – j’oublie le nom – des leaflets. 

Des pamphlets, oui.

Des pamphlets, où on parle, on donne une idée générale, une petite connaissance, et après les details, on peut vous dire après, ‘Vous pouvez lire tel livre ou vous pouvez aller a tel endroit pour avoir..’ Mais dès le collège, parce que quand on est au collège c’est là qu’on commence à avoir des petits sentiments, à avoir un petit copain, une petite copine, donc et ça nous donne une idée. Et après le collège quand on va au lycée est la même, on devrait encore renforcer l’information.  Parce que moi je sais que si je n’avais pas eu cet enfant, peut-être jusqu’aujourd’hui je ne saurais pas ce que c’est la drépanocytose. Et la même avec cet enfant on a informé les gens autour de nous, notre famille proche et puis les amis. Et jusqu’aujourd’hui il m’arrive encore d’informer certaines personnes ce que c’est la drépanocytose, parce que les gens ne savent pas.

Est-ce-que tu crois qu’il y a suffisamment d’informations par exemple sur les sites internet ?

Maintenant oui, ici en Angleterre - en France on a encore des lacunes. En France on a encore des lacunes.  Comme au départ on pensait que ça ne touchait qu’une petite minorité, et le pire en plus dans notre communauté quand on a ça, l’enfant est presque négligé, il faut le dire, surtout en Afrique. On ne considère pas l’enfant. ‘C’est la drépanocytose.’ Qui dit drépanocytose ça veut dire que l’enfant n’a pas longue vie, donc pourquoi s’intéresser à l’enfant ?  C’est vrai que l’information doit être là et pour en revenir à l’information je crois que, Dieu merci, on commence à avoir les vidéos et tout ça, mais on a beaucoup de travail à faire à la source.  Qui dit la source c’est-à-dire en Afrique. Oui.

Levels of awareness about beta thalassaemia and haemoglobin E also varied considerably. One couple said in the area of Italy where they came from everybody knew about beta thalassaemia because so many people were affected. In contrast, a couple from Vietnam and a woman from Thailand said no-one they knew had ever heard of either beta thalassaemia or haemoglobin E. One woman who was herself well-informed about beta thalassaemia had found it difficult to organise carrier screening for her fiancé in Pakistan. 

 

They asked a doctor in Pakistan about beta thalassaemia carrier screening for her partner but he...

They asked a doctor in Pakistan about beta thalassaemia carrier screening for her partner but he...

Age at interview: 29
Sex: Female
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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.

Several people said they felt the level of general information and understanding about the conditions was improving steadily in the UK, even though there was more to be done. Better information is needed both for the general population, as well as for some health staff who do not routinely come across people affected by sickle cell disorders or beta thalassaemia major. The communications strategy and training programme set up by the National Screening Programme aims to tackle precisely this issue. The following is a quote from the Standards for the linked Antenatal and Newborn Screening Programme November 2006:

“All those directly involved in the provision of antenatal and newborn screening information or services should have an induction to the programme, and must undertake regular updating in line with continuing professional development guidance for their profession and guidance”

 

He knew of lots of awareness-raising in London. But people still need to take responsibility to...

He knew of lots of awareness-raising in London. But people still need to take responsibility to...

Age at interview: 29
Sex: Male
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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.

 

When she moved to a new area she had to explain the needs of children with sickle cell anaemia to...

When she moved to a new area she had to explain the needs of children with sickle cell anaemia to...

Age at interview: 36
Sex: Female
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Well, yes, yes, because when I moved into the area - because normally children with sickle cell do get the flu jab every year - when I moved into the area, I went to the GP's to arrange one for my daughter and they said to me she's not allowed, she can't take, she's not allowed to take one. And I'm like, 'She's got sickle cell. She gets it, she's supposed to get one.' And it's like, 'No, she's not.' And I'm like, 'Okay, can you talk to a nurse practitioner about it, or talk to a doctor about it?' And she went in to talk to the practitioner. And she said, 'Yes'. Where I'm coming from, I mean if you took a child to any clinic in the south east, in the London area, then they're quite aware about these things, because there - sickle cell is a black Afro-Caribbean thing, so a lot of people around there would know about it. But where there's , there's not much ethnic minority, they know less about it. So I think it's just the awareness. 

Was this a receptionist who was'

This - yeah, this was a receptionist. And apart from that, I've had a problem with the school as well, because maybe they haven't had so many children with sickle cell, with that kind of condition. I mean if it were cancer, diabetics, and stuff like that, they would understand it better. But with sickle cell, it's like they don't know. So I've had to like, get them information about it, get my doctor to write a letter about it, get the nurse practitioner to send some more information about it. So -

What sort of issues has that been over? Like going out in the playground when it's cold and that sort of thing?

When it's very cold, like for instance last week, she had to stay in the cold and watch the other kids do PE, just because she forgot her PE kit at home. And I'm like, even if she bring, she had remembered and brought her PE kit into school, she would still not be allowed to do outdoor PE. I really took it up with the educational authorities and I demanded a written apology from the teacher, because he knew about it. 'She knows how to manage herself - she knows when she's playing out in the playground and she's really cold, she knows she has to go in. You know that.' She's been, she's missed some of her playtime as well, just because she had to get up in the middle of classes to use the toilet. They drink a lot - as such, this necessitates their using the toilet more than any other one of their peers, so why should she be punished for that? So there's been issues that I wasn't really happy with, but I think everything is settling now because I've had to have a meeting with the Headteacher, and he's a bit understanding.

Several other people talked about the contribution people who themselves have the conditions can make in challenging stigma and raising awareness, both amongst friends and acquaintances and with organisations such as schools and local councils. 

 

People affected by sickle cell should speak out about it. It's not a shameful condition. (Read by...

People affected by sickle cell should speak out about it. It's not a shameful condition. (Read by...

Age at interview: 21
Sex: Female
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I just wanted to tell the sickle cell people, the sufferers, the patients, that most people think sickle cell is a shameful disease, they shouldn't talk about it. But it's not. Because if you talk about it to people, your family, friends, that's the people will be able to help you when your child gets sick. They'll know what to do. If you keep it to yourself, you're making it worse, because you're suffering alone with the child and that's not right. So you need to seek advice at the specialist sickle cell centres. And most people are scared to go there because they think it's shameful to go there. 

And it's not your fault. It's not your fault you have it. You've got it from your ancestor, whatever. It's not you. It's not like HIV that you slept with somebody or something like that. It's just something in your blood. And you didn't do nothing bad to get it. It just happened to be there. So people shouldn't be ashamed because they have it or because their children have it. Because no one chose to have it. If it was something we choose to, probably we all would have been careful and used protection, whatever. But it's just something in your blood and you shouldn't be ashamed for.

Why do you think people see it as a shameful condition?

Because I actually know people that got it, and from reading the books. I have a friend, I've got a friend that has got it. I know she's got it, because I know she takes the same medicine my son takes. But she doesn't tell me that she's got it. That's really sad, because it's a disease and I'm her friend, I should know she's got it and help her. When she goes to the hospital I should know. She thinks it's - I don't know what she thinks. I don't know what she thinks. She's probably ashamed of it. But I don't think, she shouldn't be ashamed of what you have, really. 

I think people, because most people make fun of people that have it and - because I've heard people saying, “Oh, that boy got sickle cell, ugh”, you see? I don't know. I think more black people need to know that sickle cell is just a disease. There's not, you can't laugh because someone's got sickle cell. It's a disease and a majority of us have got the trait. So it's not good to laugh when someone's got a disease and when someone's suffering. Because you don't know, it might happen to you, or your children might have it or you, down the line.

 

It is important to spread awareness about sickle cell disorders. Her local council did not...

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It is important to spread awareness about sickle cell disorders. Her local council did not...

Age at interview: 30
Sex: Female
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I just think they should just give more, more information and support for people with, that have got kids. Because even though sometimes people - for example when I was like trying to get a place, accommodation, I went through [Town] Council, because where I used to live, because I found out she had sickle cell, where I used to live the room was very, very cold. 

So I knew she was not supposed to be like exposed to cold that much. I went through to [Town] Council, and they just wrote back to me saying that it's not something that they recognise. That's what they said to me. And it was like it's something that I think is very, I've done something bad to my child. And somebody is just telling me it's not something that's a priority for you to get a place. And I had to tell them that the place I used to live was very cold and she's got sickle cell. She's not supposed to be cold, cold. 

I just think that people, they just need to like give more information out to people to know what it's like, people with sickle cell what they need to like' what they will go through and things like prevention or whatever they need. Because when I was telling them that she's not supposed to be in a cold room, they were like, 'Oh, it's not something''. The sickle cell centre had to write to them and give them the information. Then when they took the letter to the, I think the medical whatever in the borough, and they said it's not a priority for them to give a place, even though the child has got sickle cell. I was like, 'Okay.' I don't think - they should just try and give support and help to parents.

And you were saying with the, your employer and the nursery, you had to go and find information to give them?

To give them, yeah. They should send it to schools as well, because my nursery is like, I think they, I think they've had, they said they've had a child with sickle cell, but I don't think they've got like more information. I don't know what. But because I, because of, I do go out to get information about my child. I do go out to get information about her. So I tend to pass the information to people a lot. And then I tend to talk to people about it. All the time I do talk to people about sickle cell. 
 

See also:

'Living with sickle cell disorders'

'Living with beta thalassaemia major and intermedia'

'What kinds of information people want'

'Communicating the results'

Last reviewed December 2018.
Last updated August 2010.

 
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