Statement from the DSA and DSRF: Engagement with The NHS in producing information about Down’s syndrome

A joint statement from the Down’s Syndrome Association (DSA) and Down’s Syndrome Research Foundation (DSRF):

We believe it is imperative that the official information provided to pregnant women/couples about pre-natal screening is up-to-date, accurate and balanced. It is for this reason that we agreed to work with the various public health bodies in the UK with the view of making this information of the highest quality.

Our respective organisations are two of many stakeholders involved in this process. There will be differing views on what information should be included and not all stakeholders will agree. We have worked hard to ensure that the lived experience of individuals with Down’s syndrome and their families has been reflected wherever possible. We would stress, however, that our involvement has been within certain limits and we do not have the ability to direct the format or content of the information produced. Final content is always decided by the Director of Screening, having listened to all the stakeholders involved in the process.

The Down’s Syndrome Association’s contact details will be referenced in the public information pregnant women receive and we will both continue to advocate for information produced by us (available on our websites and in our publications) to be read in conjunction with the information produced by the NHS.

DSA resources:

All of these are available from our website or you can call us on 0333 1212 300 to request hard copies to be sent to you.

  • Pre-natal FAQs – We are a source of balanced, accurate information and advice. Here you will find answers to questions that we are often asked about pre-natal screening.
  • Looking Forward To Your Baby – For parents who are expecting a child with Down’s syndrome or that has a high chance of this.
  • New Parents Pack – This includes information about telling others your feelings, as well as information about Down’s syndrome, feeding your baby and about your baby’s development. Your relatives can also find out more in our Friends and Family leaflet.

The DSRF’s Bright Beginnings new parent booklet can be downloaded here.