We provide information and support to both professionals and parents to promote best practise and ensure every birth is celebrated.
How we work with maternity professionals
Best Practice Maternity Pathway
The Best Practice Maternity Pathway has been piloted at a few units since 2021 and we aim to roll it out further in 2024. The Pathway provides a framework in which maternity units can access best practice, be audited to ensure adherence, and be supported by regional representatives.
If you are interested in introducing the pathway in your maternity unit, please email our Regional Manager RM@downsyndromeuk.co.uk.
Antenatal Care Pathway
In January 2019 we were proud to launch the Personalised antenatal care of pregnancies suspected or diagnosed with Down syndrome, in collaboration with St George’s University Hospital Trust and Down’s Syndrome Research Foundation. We would encourage all maternity units to adopt this pathway to provide expectant parents with the best care.
PADS Maternity Packs
We are passionate about ensuring expectant and new parents have access to the everyday reality of what it means to have Down syndrome in modern Britain. We have created a Maternity Pack that comprises of posters for wall displays, together with leaflets to pass onto expectant and new parents.
We would love to send to maternity units, doctors’ surgeries and health centres some resources to raise awareness and ensure patients have access to information and support.
We are delighted to collaborate with maternity units across the UK to ensure expectant and new parents have access to ongoing support and contemporary accurate information regarding Down syndrome.
Lucienne is our Training Manager who liaises with LMUs to arrange training and provide resources to health care practitioners to ensure they understand the lived experience of having Down syndrome and realise the importance of their language and attitudes when speaking of Down syndrome.
We would be delighted to deliver training to you and can offer a bespoke session to meet your individual needs.
Join our online community for maternity professionals
We also offer a closed forum for midwives and other maternity medical professionals to access information, ask for advice etc.
Sharing the news
In 2019 we published the findings of a survey of 1,410 women who had had a baby with Down syndrome in the preceding 10 years, in our report Sharing the news, the maternity experience of having a baby with Down syndrome. This sadly highlights some of the pressures women are put under around screening and continuing a pregnancy with a baby with Down syndrome. The publication has been published in the BJM and RCM journal.
We have a Breastfeeding Supporter – Sarah – who has extensive experience and knowledge around breastfeeding.
Sarah hosts online information sessions for professionals on breastfeeding a baby with Down syndrome, which features parents sharing their stories, general information and best practice.
We also offer training sessions, which generally last an hour including time for Q&A at the end.
Meet our DSUK Regional Coordinators
We have a dedicated and approachable team who liaise with health professionals to ensure they have up-to-date and contemporary information to share with parents.
See who your local DSUK Regional Coordinator is on our team page, under the Regional Coordinator section.
Speaker at events
'Nobody told me the truth about Down syndrome' book
We aim to provide parents with ongoing care and support through their pregnancy and beyond.
We love to share the reality of our everyday lives to give a contemporary understanding of what it can look like to be parent to a child or young person with Down syndrome.
We send out a copy of #NobodyToldMe the truth about Down syndrome to expectant and new parents. We’re happy to provide copies to maternity units. Please get in touch.
How we support expectant parents
We provide online support, information and resources to parents expecting a baby with Down syndrome.
As well as accessing our wonderful online community, we highly recommend you connect with local support groups too.
If you don’t find the information you are searching for, please contact us at email@example.com.