The fetal anomaly screening programme published its latest laboratory handbook in September 2018. For the first time this included standard templates for antenatal screening laboratories to use to let pregnant women know about low chance screening results for Down's syndrome, Edwards' syndrome and Patau's syndrome.
They were developed after requests from parent support groups such as the Down's Syndrome Association to improve screening results communication with parents. In particular, this relates to the ongoing work to talk about 'chance' rather than 'risk' in antenatal screening. This has been highlighted by many parents of children with Down's syndrome, such as Sarah Roberts, who writes the Don't Be Sorry blog.
Our Screening Tests For You and Your Baby leaflet has used 'chance' for some time to explain screening results.
Now that a few months have passed since the laboratory handbook was published, this seemed like a good time to remind people about these templates and the benefits of using them.
There are templates for:
- lower chance result from combined test – Down's syndrome screening only
- lower chance result from combined test – Down's syndrome, Edwards' syndrome and Patau's syndrome
- lower chance result from combined test – Edwards' syndrome and Patau's syndrome only
- lower chance result from quadruple test – Down's syndrome screening only
We would strongly suggest that all laboratories move to using these templates as soon as possible.
Download the letter templates (they are appendix 1 to the Down’s syndrome, Edwards’ syndrome and Patau’s syndrome screening Handbook for Laboratories).
Benefits of using the templates
The new templates:
- encourage consistency in how screening laboratories communicate with pregnant women
- use appropriate wording, such as 'chance' rather than 'risk'
- make the limitations of screening clear (a lower chance result means there is a low chance, not no chance, of having a baby with the condition)
- signpost people to further online information and to parent support groups
We're grateful to the many organisations and individuals who have highlighted the importance of better language and who have helped publicise the new letter templates. For example, the Down’s Syndrome Association told us:
We welcomed the adoption of more neutral language in laboratory letters. For a long time we have had objections to the use of the word ‘risk’. ‘Chance’ is a much less emotive word. We welcome the use of consistent language across the antenatal screening programme, which obviously includes the letters issued by laboratories.
If any local screening services have implemented these templates and would like to share their experience through a blog, please let us know.
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