Antenatal Screening

Information for making decisions

Many people we talked to felt strongly about the need for clear, timely information to help make decisions about screening. Some really appreciated the way healthcare staff had explained the purpose of screening and what tests they could have.

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All pregnant women should now be given by their midwife or GP the booklet ‘Screening tests for you and your baby by the NHS Fetal Anomaly Screening Programme which gives detailed information about the types of scan offered and what they are looking for.

Many people found leaflets and written pregnancy guides useful and informative, but some would have liked more face-to-face discussion as well.

This could be true even for people whose background meant they knew a lot about healthcare. This woman also described the confusion over a sample bottle for cystic fibrosis in her pregnancy pack.

One woman described a good example of how her midwife took her through the written leaflets she received in her current pregnancy. Another read the leaflets avidly, but found she still had unanswered questions, and turned to her friends and family for advice. One woman took a while to get to grips with all the leaflets. She argued most people could understand issues such as the distinction between screening and diagnosis provided they were properly explained.

Several people commented that their understanding of what all the different blood tests were for was vague - see also 'Blood test screening'. More people felt more confident that they understood what the scans were for, although here too people said with hindsight that they had not always appreciated how serious it could be.

Because timing is very important for nuchal translucency scans, it is most effective if done before 14 weeks (it is normally done between 11 weeks +2 days and 14 weeks +1 day of pregnancy), women need to know about this option early enough and not delay the dating scan past 14 weeks if they want one. The NHS Fetal Anomaly Screening Programme now recommends that women have the combined screening for Down’s syndrome (blood test and nuchal translucency scan) rather than just the blood test or the nuchal translucency scan on its own. The vast majority of units in England, Scotland and Wales now offer combined screening for Down’s syndrome. The nuchal translucency scan was not routinely available when some of these women were interviewed and some paid privately to have this scan done.

Many people said how important it was for staff to take time to explain and answer questions. One woman contrasted her experience of this in the US with her positive experience of the UK. Another felt her own experience had been very good, but knew others had been less well informed.

One woman commented (as a GP) on how time-consuming it can be to inform people properly; for example, many discussions about screening do not include much about the conditions being tested for, as opposed to information about the tests and results.

Books proved useful for many people, especially in their first pregnancy, although they used them more for general information about pregnancy than for screening. Advice from family and friends was also more helpful on general pregnancy information.

Antenatal classes usually happened too late to discuss screening. One woman in her second pregnancy had tried the Internet but found nothing very useful about screening. (Several people had however found the Internet helpful for other aspects of pregnancy.) She emphasised that you have to know what questions you need to ask in the first place, which was a common concern amongst first-time mothers.

Information is also an important issue at other stages in the screening process. For example, during scans and when people are given the results, and features in many other summaries.

For more information, see our 'Resources and Information' section.

 

Last reviewed June 2014.
Last updated June 2014.

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