To mark Down’s Syndrome Awareness Week, this month we’re focusing on a charity that strives to support people affected by Down’s Syndrome – be they parents, families or health professionals.
The Down’s Syndrome Association (DSA) began life in 1970 as a local parent support network, but is now a national charity with more than 20,000 members.
The DSA produces a fantastic array of information resources for parents, families and people with Down’s Syndrome themselves. But of particular interest to midwives, they also provide interactive training sessions designed to improve the care and information received by parents coming to terms with a Down’s Syndrome diagnosis.
Based: England, Wales and Northern Ireland. We have 20,000 members and supported over 130 affiliated support groups up and down the country.
Mission Statement: Helping people with Down’s Syndrome live full and rewarding lives. The Down’s Syndrome Association (DSA) is the only charity in the UK that covers all aspects of living with Down’s Syndrome from diagnosis through to end of life.
Tell it Right, Start it Right Campaign is the first part of the journey
NICE guidelines (‘Antenatal Care: routine care for the healthy pregnant woman’) recognise the importance of providing balanced and accurate information about Down’s Syndrome to mothers in early pregnancy, to support them in making an informed choice about antenatal screening and to ensuring a screening pathway if their screen result indicates a high chance of Down’s Syndrome.
The Down’s Syndrome Association (DSA) conducted a survey of new parent members whose baby was born after April 2009 to determine what information new parents of babies with Down’s Syndrome received at various stages during pregnancy and when a diagnosis of the condition was made at birth.
‘Midwives want to get it right’
Most parents (63%) in the survey did not recall receiving information about Down’s Syndrome prior to screening, despite the availability of leaflets from the NHS Fetal Anomaly Screening Programme. Of those who recalled receiving written or verbal information, many found this of limited help, leaving them with inadequate information to make informed choices.
Additionally, 33% of parents who had a high-risk screen result reported they were offered no further support or information to help them make an informed choice about diagnostic tests and/or whether to continue with their pregnancy.
Similarly, when parents discovered at birth that their baby had Down’s Syndrome, many felt the information provided was inadequate or outdated, leaving them feeling unsupported at this critical time.
Based on their vast experience of talking to new parents with a baby with Down’s Syndrome, and understanding how they would like to be supported with information on the condition throughout pregnancy and at birth, the DSA launched a programme of regional study days for midwives in 2010.
From talking to midwives we acknowledged that midwives want to get it right
So Tell it Right, Start it Right was born
The interactive training aims to support midwives in providing balanced and up-to-date information about Down’s Syndrome to pregnant mothers, and addresses the difficult question of how to break the news to parents. Midwives also have the opportunity to update their knowledge on what it is like to live with Down’s Syndrome in 2014, through hearing first hand from a parent about their experience of discovering their baby had Down’s Syndrome and the reality of their lives today.
The training is accredited by the Royal College of Midwives and is delivered for free. Since January 2011 we have completed 36 study days. We are kicking off our annual week with over 90 delegates attending Tell it Right training in Woolwich, followed by Leeds training in April.
The Down’s Syndrome Association will be re-running the original survey for new parents and health professionals. Like us on Facebook and keep an eye out for the link to the survey.
We also have information booklets for new parents:
To see where the DSA has delivered and wants to deliver Tell It Right training, click on the link below: