In the run up to the roll out of NIPT in England, the DSA and other organisations and parent focus groups, including Down’s Syndrome Research Foundation and SOFT-UK, who support families of children with Edwards or Patau’s syndromes, have been working, within limits, with the Public Health England (PHE) Fetal Anomaly Screening Programme.
In addition, Public Health England have undertaken a range of direct consultation exercises with families of children with Down’s syndrome through a variety of focus groups and telephone interviews, where the information materials were presented in draft format and comments invited. The DSA was asked to provide some participants for this group and a number of parents attended meetings last year, other participants were recruited directly by Public Health England and included women who were currently accessing antenatal services.
Together with Down’s Syndrome Research Foundation we jointly developed content on Down’s syndrome for a face-to-face training day for antenatal care professionals. This training was delivered in a series of regional training days for antenatal screening professionals last autumn. These sessions involved parents of children with Down’s syndrome and video content featuring children and adults with Down’s syndrome.
In summary, our focus in working with the agencies involved in developing NIPT pathways across England and Wales has been to highlight that:
- Screening for any condition during antenatal care is an “offer” and is not specifically recommended by the NHS.
It is entirely up to a woman/couple to decide what (if any) test they may wish to access.
- It is imperative that women are provided with up to date and accurate information about Down’s syndrome which should provide a balanced outlook of what life is like today, with families and individuals with Down’s syndrome contributing to shaping that information.
- Health professionals (midwives, antenatal screening coordinators, obstetricians and sonographers) must have regular training in how to best support pregnant women.
This must include accurate information about Down’s syndrome. Professionals also need to develop their skills in providing non-directive counselling – to enable women to make personalised, informed, decisions about what is right for them.
- There is a need for a national care-pathway for women continuing their pregnancy knowing that their baby has Down’s syndrome (this doesn’t currently exist).
We have put forward this recommendation to a recent NICE consultation on antenatal care and asked to be involved in developing this.
- The involvement of individuals with Down’s syndrome and the parents of children and adults with Down’s syndrome in the delivery of face-to-face training sessions for health professionals
(e.g. The DSA’s Tell It Right® training). - The Nuffield Council of Bioethics report into NIPT has clear recommendations on how screening should be implemented. We believe that their recommendations must be acted upon and implemented in full before the introduction of NIPT
Our involvement with Public Health England Fetal Anomaly Screening Programme Education Sub Group is ongoing.