Table 3 Examples of comments about the way the diagnosis was given to families

‘The doctor was very assuring and helpful…offered a counsellor and a number to call if I needed any information no matter how important’

‘I was on my own and I was offered no support or counselling… I was told with what seemed to be no empathy or sensitivity’

‘The doctor was honest and did not find it easy to give such bad news’

‘Too many people in the room’

‘The haemotologist met with me and my husband alone and invited the geneticist along as well. They also followed with a letter and some fact sheets explaining the disease. This helped because it was hard to take it all in.’

‘The paediatrician walked out half-way through the diagnosis’

‘Very satisfied because everyone involved knew what they were saying and doing’

‘Paediatric ophthalmologist not very sensitive; told us loudly with their back to our daughter… who is old enough to understand. Then referred to the [Genetic] metabolic clinic at Westmead….’

‘The staff in the genetic clinic were very informative and my husband and I could ask questions’