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

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

Age at interview 36

Gender Female

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

Age at interview 30

Gender Female

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

Age at interview 31

Gender Female

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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

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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

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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...