During the second half of 2017 we have been working with Public Health England, The Fetal Anomaly Screening Programme (FASP) and Antenatal Screening Wales to improve the quality of information that is provided to women at all stages of their pregnancy – from the beginning of their contact with their midwife (when options for antenatal screening are first discussed) through to the information that is provided about Down’s syndrome if a test identifies a baby with Down’s syndrome.
We have involved groups of parents of children with Down’s syndrome in developing these materials. They also include film clips of families talking about their experiences and films of children and adults of various ages talking about school, family life, getting a job or moving into their own accommodation. This window into the lives of different people with Down’s syndrome should give health professionals an up to date, balanced and accurate portrayal of what life is like with Down’s syndrome today, often challenging preconceived ideas that some people might have.
We are currently helping FASP to deliver a series of face-to-face training sessions for midwives and screening coordinators across the country. These training sessions also involve a number of parents of children with Down’s syndrome sharing their stories of what their lives are like.
We have also just embarked on a similar project with The Royal College of Obstetricians and Gynaecologists to provide learning materials for their members.
These training days are very similar to our Royal College of Midwives accredited Tell it Right® Start It Right training which has now been delivered to more than 5,000 midwives across the UK over the last three years. Our Tell it Right® training also includes a slot for an adult with Down’s syndrome to share their experience with the maternity professionals and so the delegates have an opportunity of meeting and listening to an adult with Down’s syndrome talking about their life.
We produce a series of information booklets for new parents and for women wanting more information during the ante-natal stage. Go to our website to see what these various booklets look like and the information we provide to support new parents. These have been refreshed recently and we make these available to maternity units across the country in our Tell It Right ® Information Pack.
Our Helpline Team continues to be there for families to talk to and we receive many calls from pregnant women and couples who want to talk to one our Information Officers.
Looking forward to a busy 2018
Our Training and Information team already have 12 Tell It Right® training days booked in for the first half of next year and we’re following up further promising leads as well.
We’d like to say a big thank you to all the families and adults with Down’s syndrome who make these training day possible, and to everyone who has supported our Tell It Right® campaign to date.