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“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.
Non-invasive screening (known as NIPT) is now being offered on the NHS in Wales to pregnant women who have already received a higher-chance result from a combined screening and preparations are being made for the roll-out of the test in England.
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.
- 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. Their decision should be respected and supported.
- 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.
- Ensuring 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 Royal College of Midwives accredited Tell It Right® training).
We also continue to be concerned about the way NIPT is being marketed and delivered by private clinics and businesses.
We have trained over 6,000 qualified and student midwives, but we need your help to keep increasing this number.
We do not charge NHS providers for Tell It Right® training but we need your help to advocate for the training in your local hospitals.
Contact our Training team to find out how we can work together to arrange a study day in your area.
“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
In 2017 we sent information packs to every Maternity Unit & Midwifery Teaching Faculty in England, Wales and Northern Ireland and to nearly 200 private maternity and screening clinics.
We need you to check with your local health professionals so that we can keep the information flowing.
We’ve sent our information packs, including copies of “… more than medical”, to maternity service in Wales.
In January 2020 we published a fact checking document on NIPT.
We would also like to invite Health Professionals working in Maternity Services to join our closed Facebook group: DSA Tell it Right® group.
We hope to use this group to answer questions, share experiences, highlight information and resources and consult on how we can best support health professionals in maternity services.
The Down’s Syndrome Association is also:
- a part of a group of stakeholders engaging with the NHS in England and Wales on the production of new resources for parents and professionals;
- working with Public Health England (PHE) to develop training for professionals involved in the prenatal screening process; and
- working with The Royal College of Obstetricians and Gynaecologists and Down Syndrome Scotland to develop a new eLearning resource for health professionals working with pregnant women.
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”.
Learn more about the Tell It Right® study day
The Tell It Right ® interactive study day will ensure that all the relevant professionals who attend gain accurate, balanced and up to date information about Down’s syndrome and living with Down’s syndrome.
It will enable staff to offer the best support to expectant parents, from the very beginning of the screening process, and to new parents.
Delegates will hear about personal experiences from parents of a child with Down’s syndrome and/or a young person with Down’s syndrome.
Delegates will find out about support available locally through affiliated groups.
We work in partnership with local support groups, maternity services or universities to organise a day at a venue and date of your choice.
The DSA does not charge NHS providers for a study day. If you would like to help us deliver more training to more hospitals, please donate to our Tell It Right appeal.