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.

Her midwife's discussion of screening and possible consequences was excellent.

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.

Her pregnancy pack included a sample container for cystic fibrosis screening, but did not explain what it was for.

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.

The written information was better in her current pregnancy than her first and the midwife discussed it carefully with her.

Written information from her midwife was helpful, but she still had unanswered questions.

Written information can seem overwhelming, but people can understand the difference between screening and diagnosis if it is explained clearly.

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.

It was not always clear what different blood tests were for, but it matters less if the results are normal.

Looking back she felt more explanation of the purpose of the 20-week anomaly scan would have been helpful.

They had not fully appreciated what the 20-week scan was looking for.

Some tests, particularly nuchal scans, are not currently available on the NHS everywhere in the country. Because timing is very important for nuchal scans, women need to know about this option early enough to arrange for a private scan if they want. This does not always happen.

Parents need to know early enough about nuchal scans to be able to book privately if necessary.

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.

She felt professionals she met in the UK gave more time to explain and listen than some staff she met in the US.

Staff had informed her clearly about screening options but she knew other women who 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.

It is time-consuming for health professionals to inform people fully, especially about all the conditions being screened for.

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.

She found one helpful book with factual information. Talking to friends can make you more anxious.

Books can be helpful, especially in a first pregnancy, but they can also make you anxious.

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.

She looked for information on the internet but found it too technical. You need to know what questions to ask.

For first-time mothers it is difficult to know what questions to ask and what information you need.

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.

See also the 'Resources and Information' section of our website.

Last reviewed August 2010.

Last updated August 2010.