Down's Syndrome Association

HEALTH SERVICE CONTINUES TO FAIL PARENTS OF CHILDREN WHO HAVE DOWN’S SYNDROME

22/05/2006

Many parents of children who have Down’s syndrome are being unsupported and misinformed by health professionals, according to a survey released today (22 May) by the Down’s Syndrome Association (DSA).

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Parents stated that many health professionals had outdated or prejudiced views about people with Down’s syndrome and felt led towards termination or adoption when they received a positive diagnosis.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. To download a copy click here. Information for new or expectant parents of a child with DS is available through the website or by calling .

ENDS.

For more information please contact Marie Benton at the DSA on: / mobile: email:

NOTES TO EDITORS:

Interviews with spokespeople are available on request

The DSA is hosting the Shifting Perspectives exhibition at the Oxo gallery throughout the awareness week (05 – 11 June). Admission is free and the gallery is open from 11am-6pm daily. The exhibition features the work of five photographers who have family members with DS. The exhibition aims to highlight that people with DS can and do lead rewarding and fulfilling lives.

The DSA is a national charity that exists to provide information and support for people with Down’s syndrome, their families, carers and those with a professional interest. It also seeks to improve knowledge and understanding and champion the rights of people with Down’s syndrome

In a year, the DSA responds to around 29,000 telephone enquiries from members, professionals and the general public, they send out more than 25,000 leaflets and fact-sheets and receive around 8 million hits on the website

The DSA has over 100 local affiliated groups throughout England, Wales and Northern Ireland as well as offices in South London, Cardiff and Belfast, plus a team of regional staff supporting families and professionals throughout most of England, Wales and Northern Ireland

The DSA relies almost entirely on voluntary donations to continue operating; it has an annual operating need of approximately £1.9 million