Improving the system

The great majority of people we talked to were generally very satisfied with the service they had received from individual specialist sickle cell and thalassaemia counsellors and other specialist genetics advisers. These staff were frequently praised for their empathy, their thoroughness in ensuring clients understood the information they were given, and their willingness to be available to answer questions and provide reassurance in the longer term. (See also ‘Sources of support’).

However, people identified several ways in which care could be improved. Many of these suggestions can be found in other pages in this section, for example on ‘What kinds of information do people want?‘, ‘Communicating results’ and ‘Timing and delay’. Here the focus is particularly on professional training and awareness, and the system overall.

Most people appreciated that sickle cell disorders and beta thalassaemia major are relatively unusual conditions which non-specialist staff may come across rarely, especially in some parts of the country. However, a few people had found it difficult when they encountered staff who were not very well informed or helpful.

Professional learning: More midwives and GPs should be trained about sickle cell disorders and…

Age at interview 21

Gender Female

View profile

Video and audio clips read by an actor.

Midwives and GPs, they probably know more about it than me. But I think they should have more midwives or GP trained on that. Because this country is a multicultural country, so they should know about sickle cell, other peoples diseases, just what diseases from other countries and stuff. So we have thalassaemia or whatever it is – they should know about all these kind of things, sort of provide better information to people. Because theres not really a point in going to a GP who don’t know what it is, what sickle cell is, himself, because he won’t give you good information on the disease.

Footnote Sickle cell disorders and beta thalassaemia major are genetic/inherited conditions, and therefore can affect anyone. The highest prevalence of sickle cell is found amongst Black Caribbeans, Black Africans and Black British. The highest prevalence of beta thalassaemia is found amongst Cypriots, Italians, Greeks, Indians, Pakistanis, Bangladeshis, Chinese and other Asian Groups. Both genes are also found in the northern European population.

Embed Print Transcript

Professional learning: The receptionist at her new GP surgery was not aware children with sickle…

Age at interview 36

Gender Female

View profile

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 shes not allowed, she can’t take, shes not allowed to take one. And I’m like, ‘Shes got sickle cell. She gets it, shes supposed to get one. And it’s like, ‘No, shes 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 theres, theres not much ethnic minority, they know less about it. So I think it’s just the awareness.

Embed Print Transcript

Professional learning: It would be better if more health professionals knew about sickle cell…

Age at interview 30

Gender Female

View profile

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 didt 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 dot 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 hs 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 hs from, yes, because hs from Africa as well. Hs like,I know more about it from back home

So it’s, I think it’s, it would be easier if theve 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 – ve never met white, 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 shs 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 shs 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.

Embed Print Transcript

Midwives need to take more time to explain the aim of the screening test and prepare people for…

Age at interview 31

Gender Female

View profile

English translation:

I didt have enough information. Actually the midwives didt really help me in that respect. it’s much more, the woman – I dot want to name her – at the clinic, thas the service which helped me a lot, because they even said,If you have any questions, any problems, you can come back any time, thas why wre here But the midwives, no. They just, they gave me the forms to do – even when I did it for the first one, they didt say it was about that, they didt 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 thi, thas all. I didt 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 didt knowsickle cell trai,sickle cel, what was it? d never heard anyone mention this name, so I didt 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?

d really like the midwives to take time to explain to their patient, so to speak, what people can expect, for example,Yoll 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, hers what could happen Then They’re take the blood test and I know what m expecting and m prepared, I know that m doing it for a particular reason, and if it turns out this is the result, m going to do this, or things like that. Yore better prepared than when they send you the results and you dot 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.

Embed Print Transcript

There were many comments about the need to raise awareness in society as a whole, and there was general support for media campaigns through TV, local radio and newspapers. Some people identified a role for local churches, mosques and temples to get involved in spreading information and supporting screening. Professional staff may find it useful to read ‘Awareness and understanding about the conditions‘.

One reason why people supported the idea of awareness campaigns was to encourage more people to be screened before pregnancy or before starting a relationship. Many people would have preferred this themselves, rather than finding out once they were already pregnant, even though they still felt screening during pregnancy was a good idea. (See ‘Timing and delay’ and ‘Telling people you are a carrier – implications for relationships and marriage’).

At the level of systems and processes, a woman described being upset by requests for repeat screening for both herself and her partner. Not only did this seem to her to be inefficient and inconvenient, but it sometimes made her worry whether their results were really correct.

Professional learning: There should be better information for staff about who has been tested…

Age at interview 29

Gender Female

View profile

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, ‚ÄúCan we have it done again? Can you do it again? you just think, ‚ÄúWell, 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 shes 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, ‚ÄúLet’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 theres no need to, really. It’s a waste of resources as well.

Embed Print Transcript

The fact that she kept being asked to come for screening made her feel no-one believed her results anyway, and as a result she couldn’t see the point in carrying a card to tell people she was a carrier.

‘I get a card to carry 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?’

Most people felt their communication with specialist counsellors had been very positive and clear. However, because the conditions are more common among people from minority ethnic communities, some mentioned the need for interpreters and written or audio information in different languages.

Professional learning: Access to an interpreter would have helped, as his wife speaks very little…

Gender Male

View profile

FatherI 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 didnt really understand to a great degree, and obviously other people find the same situation. That might be a good thing.

Mm. So they havent got any information in Thai?

FatherHmm. The midwife was very, very good. She went onto a website. I mean, we havent, were not e-mail or website friendly, but the midwife got us some information off the Internet in Thai, which has helped my wife.

MotherMmm.

FatherBut weve asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.

Embed Print Transcript

A French-speaking mother explained that she had been taught about sickle cell when she was at secondary school in the Congo, but she did not know the English term ‘sickle cell’, only the French term ‘la dr‚àö¬©panocytose’. It was only when she met a counsellor who could translate it for her that she realised it was something she already knew about.

Some people, including some women from Pakistani and Bangladeshi backgrounds, were very pleased that their counsellor or GP came from the same community and could explain things directly without the need for an interpreter. One Urdu-speaking mother, who was given information in English, said:

‘I’m not bothered, but I would prefer my own language. I can read easily, I can understand, I can write, but I prefer to speak in my own language. If I know that you speak my language, then I would prefer to speak in my own language. If I know that you cannot speak, then I can speak in English.’

Last reviewed December 2018.

Timing and delay

People have concerns about several aspects of timing in the process of screening and diagnosis, especially when tests are carried out, and when results and...