Ravenfire
19-06-2006, 09:43 PM
Many parents of children who have Down’s syndrome are being unsupported and misinformed by health professionals, according to a survey released by the Down’s Syndrome Association (DSA).
The survey was published as part of the build-up to Down’s Syndrome Awareness Week, taking place 5-11 June, which is the time of year when the DSA and its supporters raise both awareness about the condition and vital funds for the Association.
The survey showed that:
37% of parents who find out at birth that their child has Down's syndrome were given no written information about the condition
40% were given no practical support e.g. the details of a local parent support group
22% of parents who decided to go ahead with the pregnancy despite knowing their baby had Down's syndrome felt that their decision had not been supported by health professionals
Two thirds of parents were given their test results over the phone, many of them on their own and some when they were at work
Parents stated that many health professionals had outdated or prejudiced views about people with Down's syndrome and felt led towards termination or adoption when they received a positive diagnosis.
Johanne Walters, one of the parents who was surveyed, said:
"The phone rang and I was told that my baby had Down's syndrome. I was immediately offered a termination and 'genetic counselling' - I had already been on the internet and knew the science behind the condition. What I needed was balanced, thoughtful advice. Unfortunately this was not forthcoming and I felt that I was being led towards the termination option. All the information that doctors gave me was negative and seemed to question why anybody in their right mind would have a child with special needs."
Carol Boys, Chief Executive of the DSA says:
"Although attitudes and procedures have undoubtedly improved over the years, it is shocking to hear that so many parents are still not receiving the support and information that they require from health professionals. It is vital that parents are given the diagnosis in a sensitive and decent way, and provided with a balanced and informed view to enable them make a decision on the future that is right for them."
To support health professionals, the DSA is promoting best practice guidelines for both pre and post natal diagnosis. These are attached, along with the executive summary of the report. Information for new or expectant parents of a child with DS is available through the website or by calling 0845 230 0372.
The survey was published as part of the build-up to Down’s Syndrome Awareness Week, taking place 5-11 June, which is the time of year when the DSA and its supporters raise both awareness about the condition and vital funds for the Association.
The survey showed that:
37% of parents who find out at birth that their child has Down's syndrome were given no written information about the condition
40% were given no practical support e.g. the details of a local parent support group
22% of parents who decided to go ahead with the pregnancy despite knowing their baby had Down's syndrome felt that their decision had not been supported by health professionals
Two thirds of parents were given their test results over the phone, many of them on their own and some when they were at work
Parents stated that many health professionals had outdated or prejudiced views about people with Down's syndrome and felt led towards termination or adoption when they received a positive diagnosis.
Johanne Walters, one of the parents who was surveyed, said:
"The phone rang and I was told that my baby had Down's syndrome. I was immediately offered a termination and 'genetic counselling' - I had already been on the internet and knew the science behind the condition. What I needed was balanced, thoughtful advice. Unfortunately this was not forthcoming and I felt that I was being led towards the termination option. All the information that doctors gave me was negative and seemed to question why anybody in their right mind would have a child with special needs."
Carol Boys, Chief Executive of the DSA says:
"Although attitudes and procedures have undoubtedly improved over the years, it is shocking to hear that so many parents are still not receiving the support and information that they require from health professionals. It is vital that parents are given the diagnosis in a sensitive and decent way, and provided with a balanced and informed view to enable them make a decision on the future that is right for them."
To support health professionals, the DSA is promoting best practice guidelines for both pre and post natal diagnosis. These are attached, along with the executive summary of the report. Information for new or expectant parents of a child with DS is available through the website or by calling 0845 230 0372.