New national guidelines have been issued for the first time for how families should be informed that their child has a disability.
The guidelines have been produced by the National Federation of Voluntary Bodies providing services to people with intellectual disabilities and follow a widespread consultation process with the HSE, Department of Health and Children, professional bodies and unions and almost 600 parents of children with disabilities.
The guidelines have the support of Minister for Health and Children Mary Harney who launched them yesterday. The guidelines have been produced in both booklet form and there is a training video, Words You Never Forget.
Informing Families of their Child's Disability, the report based on the consultation process, found a widespread level of dissatisfaction at the way news of a child's disability was conveyed to parents.
Over a quarter said they were "dissatisfied or very dissatisfied" with the manner in which they were informed, nearly one-third didn't receive the news in a private environment and almost half didn't get positive messages or hope with diagnosis. Four in 10 didn't understand what they were told and one in three received no written information.
The report documented a case of one parent who was told by a doctor, "Double whammy; Down syndrome and hole in the heart, are you over it yet?"
Another woman who had asked her paediatrician if her child's Down syndrome was mild was informed: "No, there is no such thing, he is Down syndrome and will be for life."
The guidelines recommend that parents get to spend time with their newborn child before the news is conveyed so that they see the person first and not the disability.
The news of a disability should be conveyed to parents with empathy and honesty, simple language should be used and the news should be conveyed to both parents together and in the presence of at least two health professionals.
It also recommends that the diagnosis is given face to face in a private room and not over the phone.
It particularly emphasises that a message of hope is conveyed to parents who are told their child has a disability and that the medical professionals reassure the parents involved that they will be there to help the parents at every juncture
Report author Alison Harnett said she was initially surprised that no guidelines existed for the conveying of bad news to parents despite the trauma it brings for both them and health professionals who have to tell them the news.
"We have found that there is a huge appetite among health professionals for guidelines like these. Time and again they told us that it is a very emotionally challenging experience and the most difficult part of their job and that they would appreciate guidelines and mechanisms of support to convey the information.
"Successive government strategies have provided some guidelines in the past to various health professional bodies, but there is a huge number of different disciplines that could provide the news to parents and so there was no national overview for everybody involved."
The guidelines will be voluntary, but are expected to be endorsed by everybody who works in the health services.
The federation will be reviewing the guidelines in two years.
