This evening’s Wales This Week programme on the recent introduction of Non Invasive Prenatal Testing (NIPT) for Down’s syndrome in Wales provided an important and very timely opportunity for people with Down’s syndrome and their families to share their experiences of what life with Down’s syndrome is like.
The programme will have given viewers an insight into the lives of a diverse range of families and it is very clear that children and adults with Down’s syndrome have very positive stories to share, enjoying fulfilled lives, included in their communities.
Throughout our near 50-year history we have fought for a greater understanding and a wider inclusion of people with Down’s syndrome in all areas of society. The introduction of the offer of new prenatal tests for Down’s syndrome refocuses our attention on this crucial task.
The Down’s Syndrome Association believes that all women/couples embarking on antenatal care, where discussions about pre-natal testing for Down’s syndrome begin, need access to a service of the highest quality. We would remind everyone 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. The information should provide a balanced outlook of what life is like today, with families and individuals with Down’s syndrome contributing to and shaping that information.
- Health professionals (midwives, antenatal screening coordinators, obstetricians and sonographers) must have regular training in how to best support pregnant women. 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.
- 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 is vital. We are pleased that many of the people with Down’s syndrome and their families featured in the Wales This Week programme have been involved in helping deliver The Down’s Syndrome Association’s Royal College of Midwives accredited Tell It Right™ training.
We encourage anyone with an interest in Down’s syndrome, especially pregnant women/prospective parents to contact our Helpline and talk confidentially to one of our trained Information Officers who have the time and expertise to answer any query they may have. We also have a range of information resources, both printed and on our website, that support couples during the antenatal period. We are always here to listen, give information and support. Our Helpline is 0333 12 12 300 and our website is www.downs-syndrome.org.uk
We are also delighted that the programme featured a number of adults with Down’s syndrome in employment, for more information about our employment support in Wales, WorkFit, take a look at www.dsworkfit.org