Down’s Syndrome Association campaign to improve information for parents
Posted Jun 12 2009 6:43pm
June 8-14 is Down’s Syndrome Awareness week in the UK and I just found out that the Down’s Syndrome Association’s campaign this year is a topic that I have written about often: improving the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome.
“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.
We think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down’s syndrome or other prenatally and postnatally diagnosed conditions.”
I have previously mentioned that we were luck enough to receive a huge amount of incredibly useful and supportive information about Down’s syndrome, but only after G was born, and while I was very happy to receive it, it did annoy me that the information hadn’t been given to us sooner.
I do not think that the information would have changed our opinion, but I do think it would have made us more comfortable in knowing he support that is available during what it a very difficult and distressing decision-making process.
The DSA notes that the Prenatally and Postnatally Diagnosed Conditions Awareness Act recently became law in the US and has created a petition for to be sent to the UK government for similar legislation to be introduced in the UK.
Needless to say I’ve added my name to the list. If you are a UK citizen and you support the petition’s aims, please do sign up.