Tell It Right, Start It Right Campaign History

‘Tell It Right, Start it Right' campaign update

Our ‘Tell It Right' online survey of new parents has now closed. Thank you to all those parents who completed the survey. The results will be evaluated over the next few weeks, and we will then decide how best to proceed.

DSA talk to midwives at Royal College of Midwives conference

The Down's Syndrome Association (DSA) had a stand at the Royal College of Midwives annual conference in Manchester on 26-27 November 2009, where we exhibited a small selection of Shifting Perspectives photographs. During the two days we talked to nearly 300 midwives about Down's syndrome, all of whom agreed with the importance of providing accurate and up-to-date information about Down's syndrome to new parents prior to antenatal screening and when a diagnosis is made. Many of them agreed to sign up to the ‘Tell It Right' e-petition on the government website.

These discussions with midwives also helped us to better understand what information they provide to mothers during pregnancy, and their views about Down's syndrome and screening. We will continue to find out more about their views through a survey of midwives during December.

Student Midwives urged to back ‘Tell It Right, Start it Right' campaign

Many of the visitors to the DSA stand at the Royal College of Midwives conference were student midwives, and they were keen to learn more about Down's syndrome so they could be confident in discussing the condition with new parents. Many of them also signed up to the ‘Tell It Right' e-petition. In addition, StudentMidwife.NET, the worlds biggest online support network for students midwives is backing the campaign and urging their members and visitors to show their support.

Rob Collyer, Director of StudentMidwife.NET commented,

 "It is unbelievable that in today's society parents do not have more readily accessible information about disorders such as Down's Syndrome. It has to be a primary focus looking forward to ensure parents are armed with all they need to know. We are urging all of our members to sign the DSA's ‘Tell It Right' e-petition."

 

Tell It Right, Start it Right campaign

We are campaigning for high quality information to be given to parents after they have received a prenatal or postnatal diagnosis of Down's syndrome.

When you had your child with Down's syndrome, how much information were you given?

Did you have a knowledgeable healthcare professional who explained in detail about Down's syndrome? Were you given contact details for the DSA and our current leaflets?

Or perhaps you were given an out-of-date leaflet and left to find out about Down's syndrome yourself.

Research from the Down's Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down's syndrome.

Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information.

• Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes.

• Contact information regarding support services, including information hotlines specific to Down's syndrome or other prenatally or postnatally diagnosed conditions, resource centres, national and local peer support groups, and other education and support programmes.

What to do now?

  • Sign the DSA's petition on the Government website - We received 2,541 signatures which were passed onto the Prime Minister.