Support our Tell It Right, Start It Right Campaign
The Down’s Syndrome Association is:
- working with the Nuffield Council on Bioethics to ensure our voice is heard. You can read our response to their consultation here.
- Working with Public Health England (PHE)
- seeking funding for the delivery of more Tell it Right, Start it Right (TIR) training across the country.
- Seeking the support of MPs Parliamentary Briefings
The DSA has built a body of evidence which proves that a significant number of health professionals continue to provide information about Down’s syndrome in a biased manner. Prospective parents have reported feeling pressurised into a termination when being given a very pessimistic view of the life chances of someone with Down’s syndrome.
As Non-Invasive Prenatal Testing (NIPT) is currently being marketed without the necessary regulation to ensure that each individual choosing to take the test is able to make a decision based upon accurate and balanced information delivered by appropriately trained health professionals, we urgently need your support for our Tell it Right Start it Right campaign to address this danger.
We are campaigning for necessary consideration of the ethical implications of NIPT, regulation, and mandatory training for everyone involved in delivering NIPT.
Well trained professionals who work in antenatal, neonatal and postnatal care must provide expectant parents with accurate and balanced information about living with Down’s syndrome today, to include correct information about the life prospects of people with Down’s syndrome, the impact on families, support available in the community and the joys and challenges of having a child with Down’s syndrome.
Easily understood and up to date information about Down’s syndrome must be given without bias or direction.
The campaign fund will also enable us to:
- Immediately increase the number of Tell it Right Start it Right study days we provide for qualified health care practitioners at hospitals. These Royal College of Midwives (RCM) accredited study days are delivered in conjunction with hospitals and local parent support groups. Participants hear personal stories from parents about how they were told their child had Down’s syndrome prenatally and after delivery. We also introduce them to adults with Down’s syndrome who talk about their lives. This comprehensive, successful training is delivered to midwives, obstetricians, paediatricians and sonographers
- Provide training to student midwives and other health care students at universities
- Offer training to the wider range of practitioners who need to know accurate and balanced information about Down’s syndrome in order to be able to answer questions and support expectant parents through the screening process.
A parent’s recent experience of NIPT:
“Someone from the hospital called me on my mobile. At the time I was in my open plan office at work. She did not ask if I was OK to talk. Instead she just went straight to saying that the blood test had come back positive for Trisomy 21. At the time I couldn’t remember whether Down’s syndrome was Trisomy 21 or another of the Trisomies.
If someone is going to give such significant news over the phone, they should check that they are in a position to talk and that they have some privacy. I also think that plain English should have been used. Trisomy 21 may be the medical term but almost everyone knows the condition as Down’s syndrome and I can’t be the only person who wouldn’t understand what she was saying.
Once I found a private place I was able to confirm what the test results meant. I was then told that I should come in that afternoon for CVS or amnio (I can’t remember which it was I was offered) to confirm the finding and determine which twin was affected. I wasn’t asked if I actually wanted invasive testing and it wasn’t presented to me as an option. I was told I should do it and I should do it that afternoon. I told her I didn’t actually want invasive testing because of the risk to the babies. She described the risk as small, but couldn’t actually tell me what it was when dealing with twins. She was pretty pushy that I should come in.
I don’t believe there was any reason I had to come in that day. I assume most people would want more information sooner rather than later but I would have been fine having a couple of extra days to process the news. I am pro-choice but we had discussed it and already decided that if one of the babies had Down’s syndrome we wouldn’t want a termination. And even if I had wanted one, I was only 14 weeks along – there was enough time to spend a few days thinking about it before doing anything invasive”.
If you would like to make a donation to our campaign, please go to our fundraising page