About Down's Syndrome : Tell it Right® Start it Right

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Support our Tell It Right® Start It Right Campaign


“When I was pregnant with my son, I encountered a lot of negativity and was told countless times by a hospital specialist that my child will be “severely retarded” if I continued with my pregnancy. This doctor knew that my husband and I had decided to continue with the pregnancy, however, he still chose to inform us about how difficult life would be with a child with Down’s syndrome…mothers should not have to feel like I did when I was pregnant with my beautiful son. My son is now three years old. He can’t walk or talk yet but he is perfect in my eyes.” (a mother’s experience)

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.

Get involved

We have trained over 3000 qualified and student midwives, but we need your help to keep increasing this number.  Here’s how you can support this vital work:

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“Attended this study day today, absolutely fantastic, the impact of listening to parents sharing their experiences was both heart wrenching and practice changing. All midwives, doctors, neonatal nurses, students and health visitors should have the opportunity to take part in this study day, thank you to everyone involved.” Feedback from TIR training day October 2016

 

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 The Down’s Syndrome Association is also:


  • in correspondence with The Royal College of Obstetricians and Gynaecologists.
  • working with the National Screening Committee to develop training for all those professionals involved in the prenatal screening process. We will also be involved in developing resources to help both professionals and new parents understand the condition, and what life is like for people with Down’s syndrome.
  • Seeking the support of MPs through Parliamentary Briefings:
    • Updated Parliamentary Briefing document September 2016. Download here
    • Parliamentary Briefing document sent to all MPs May 2016. Download here
  • 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).

You can read our campaign updates here.

The Campaign


 

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:

  • Royal College of Midwives accredited course logoImmediately 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.

Learn more about our Tell It Right® Start It Right study day

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”.

photograph courtesy of Eleonora_os/Shutterstock

 

Tell it Right® is a registered trade mark of the Down’s Syndrome Association