Future of Downs was set up initially to help prospective parents with a prenatal diagnosis of Down’s syndrome. To give them a resource that was unbiased and gave up to date real life experiences. It grew to the supportive network it is today. Through our shared experiences we have been able to help many prospective parents when they have not felt supported by other sources.
Today we have an opportunity to contribute to something that could improve all future parents experiences of prenatal screening.
The NHS are looking to introduce non-invasive prenatal testing as an alternative to aminocentesis or CVS, but there are concerns that parents need more or better information about prenatal screening. The Nuffield Council of Bioethics are gathering experiences from parents and want you to contribute.
Did you have prenatal screening?
What was your experience?
Have you had NIPT?
Did you refuse screening, how was the decision received?
Did you have a prenatal diagnosis?
How was your experience?
Were the health care professionals supportive?
Did you feel you received the right treatment for your unborn baby?
Maybe you didn’t have a prenatal diagnosis but are a person with Down’s syndrome or have a family member with Down’s syndrome and are concerned about the wider implications of testing for the Down’s syndrome community?
The Nuffield Council of Bioethics Working Group on NIPT
Will consider questions about:
- the use of NIPT in NHS screening programmes,
- the provision of NIPT in the private healthcare sector,
- the responsibilities of providers to ensure individuals and couples are making informed choices,
- and any wider implications for society of increased uptake of NIPT, for example for people with disabilities.
Please provide your response to Nuffield Council of Bioethics by 25th July 2016
If you want more information about NIPT from the Nuffield Council of Bioethics
How to respond
That is entirely up to you. There are some things you can do to prepare though. I realise it can sometimes be difficult to relieve the memories of when you received a prenatal diagnosis. It will depend on many factors, like how well prepared you were, how the information was delivered and what support you received. Take time to look over the preview of the questions that Nuffield have on their website, as you do this try to think clearly about the interactions you had with your health care professionals (midwives, obstericians, ultrasonographers, genetics counsellors). What was good? What was bad? Why? Was it consistant with the guidance they are supposed to follow? Do you think the guidance is right/sufficient?
Below are the guidance for health care professionals to follow when screening for prenatal diagnosis (NICE CG62) and how to manage a pregnancy following a prenatal diagnosis of Down’s syndrome (RCOG Guidance – Section 6…. yes this is the correct guidance even though it’s title is Termination of Pregnancy for Fetal Anormaly).
Do you think prenatal screening has an impact on people with Down’s syndrome? Does it affect development of expertise in education, healthcare? What about funding for research into assisting those with Down’s syndrome? What do you think the future hold for people with Down’s syndrome? Will improved screening reduce the size of the community or do you think that improved information could reduce the fear and prejudices that exist?
Future of Downs Consultation Document
Future of Down’s will be submitting a more detailed consultation response. If you feel your story needs more focus than the questionnaire allows and you are happy to discuss it with us. Please get in touch Victoria Woodham