World Down Syndrome Day is marked each year on March 21, beginning in 2006. The 21st day of March was selected to signify the uniqueness of the triplication of the 21st chromosome which causes Down Syndrome. To find out more information about #WDSD head over to: https://www.worlddownsyndromeday.org/
In this blog we have taken this opportunity to share lots of useful information and resource that is available locally and nationally to help raise awareness and provide the details of where people access support.
Local mum Rachel, who is a member of the Doncaster and Bassetlaw Maternity Voices Partnership (DBMVP), and has a son diagnosed with Down Syndrome, has kindly shared the details of the local forums she is a part of that have really supported her and her son’s journey.
Rachel is a member of the Nottinghamshire Down Syndrome Support Group (NDSSG) a parent-led organisation that provides a range of support services to parents, carers, and siblings which anyone can join who has a child of any age with Down Syndrome living in and around the Nottinghamshire area. NDSSG holds large events throughout the year where everyone of all ages and their family can get together and have fun! They also provide a wide range of activities such as weekly parent and toddler groups, a football club for 5–35-year-olds and dance sessions for members aged 5+ years as well as a Facebook chat group for parents of children in certain age groups. Anyone can follow NDSSG on Facebook and support via this link and to join NDSSG parent group you can request here. If you would like more information, you can browse the NDSSG website.
Another organisation which Rachel is a member of is Positive About Down Syndrome (PADS) which is a charitable organisation that aims to empower expectant and new parents of a baby with Down Syndrome and to educate and enlighten medical professionals by providing resources and training.
PADS provides community support within their private Facebook groups right from pregnancy up to preschool and they also hold a separate group for Dads. Along with supporting families, PADS also provides support to health prosessionals and nursery and teachinng staff by having a group they can be a part of as well as delivering training workshops.
Recently the PADS Regional Maternity Coordinator for South Yorkshire and East Midlands Bess Popplewell, contacted the Doncaster and Bassetlaw Maternity Voices Partnership to look at working collectively to offer support to healthcare professionals as well as local parents who may be starting their own Down Syndrome journey. Bess provided an offical introduction letter which details the incredible support that PADS has to offer that you can read all about, along with some ‘good practice guidelines’ in the below documents.
The DBMVP is really looking forward to working closely with Bess and Rachel to improve local maternity services. Currently there are plans to have display boards and maternity information packs for the ends of the beds across both Doncaster and Bassetlaw Maternity Units. We will also be looking at offering bespoke training around the parental perspective of receiving the news baby has/may have Down syndrome, the importance of language used around screening and diagnosis, examples of best practice and the lived experience of having Down syndrome in the 21st Century. If you would like to be involved in this work or be a part of the DBMVP to share your lived experience then please drop us an email on dbmvpinvites@gmail.com.
Just down the road there is also the Sheffield Down Syndrome Support Group (SHEDS). This is a family-run community group that welcomes families in the local area (Sheffield, Doncaster, Barnsley, Rotherham, and Chesterfield) to get involved. SHEDS has been running for over 20 years to support individuals with Down Syndrome as well as their families. It currently hosts a weekly Baby & Toddler Group, a monthly Family Gathering and holds social events throughout the year, including World Down Syndrome Day, Summer, and Christmas. There is an online Facebook community for families, as well as WhatsApp Support Clusters that can be accessed if you need to talk to someone/a smaller group of people for advice and support.
SHEDS works closely with PADS and the local maternity hospital, Jessop Wing, to ensure new families receive positive information about Down Syndrome as they receive a diagnosis. If you’d like more information, or would like to get involved, you can visit the website: www.sheffielddownsyndrome.co.uk, find them on Facebook: www.facebook.com/sheffielddownsyndrome, or follow them on Instagram: www.instagram.com/sheffielddownsyndrome
In addition to the above organisations, there are other services available that provide a variety of support and information:
Future of Downs – support, chat, and information for parents of children with Down’s Syndrome. Future of Down’s – Support Forum, Chat, and Information for parents of children with Down’s Syndrome (futureofdowns.com)
Down’s Syndrome Association – provide support, information, advice and counselling to parents/carers, families, and those with a professional interest.
TEL: 0845 230 0372 www.downs-syndrome.org.uk
Stepping Stones DS – provides a wide range of activities and services to help children and young people with Down syndrome to fulfil their potential and an opportunity for families to become part of a local support network. Stepping Stones DS | Down Syndrome Support | England
