‘Tell It Right® Start it Right’ is an initiative created by the Down’s Syndrome Association. Since 2010 they have been delivering training days to antenatal screening coordinators and midwifery services throughout England and Wales. The aim is to ensure that health professionals have up to date, accurate and balanced information about living with Down’s syndrome.
On 13 November, over 60 midwives and health professionals from Swindon and the surrounding area took part in the study day which is accredited by the Royal College of Midwives (RCM). The hope is the training will improve the way that new parents are told that their baby has Down’s syndrome and assist them to support expectant parents through the screening process by sharing the information in a non-directive manner.
The Swindon Down’s Syndrome Group are facilitating the training in our local area. “We know first hand what it’s like to find out your baby has Down’s syndrome. To be offered a termination or told your child will be “a burden” is not what you want to hear moments after your child is born.
It’s so important to hear a balanced view, find out what life is really like for someone with Down’s syndrome. It’s every families right to make a decision about what’s right for them, but they cannot do that without all the information. We want to support women and their families at whatever stage they are at in their pregnancy to understand more about Down’s syndrome.”
Midwives got to hear real life experiences from parents from the Group, with many midwives commenting how powerful the parents’ input had been. They listened to a speech from one of the Group’s young people on what it’s like to have Down’s syndrome.
New parents may have lots of questions or feel rather overwhelmed by what it means to have a baby with Down’s syndrome. It can be difficult at first to see past the diagnosis which is completely normal.
The Group had on display their new parent congratulation packs. The packs are given to new parents on the birth of their baby. Michelle James, New Parent Contact for the Group said “I wanted the packs to celebrate the birth of the new baby and not overwhelm them with information. The pack has gifts for the baby, a blanket, milestone cards, congratulations card plus some information about Down’s syndrome.” The packs will be available at the Great Western Hospital and will be given out by the midwifery teams.
There was a real sense of engagement and positivity throughout the day, with many midwives chatting to parents and trustees from the local charity. Cailey Whitcher, Trustee of the local charity said “We hope the midwives found the day to be a valuable experience, something they can apply to their professional practice and something they will share with their colleagues at the Great Western Hospital.”