`Jack was four months old. No one suggested he was blind'
How should parents be told? Annabel Ferriman on new rules
Sunday 09 June 1996
He said: "Of course, the operation will only be cosmetic because he obviously cannot see."
Mrs Deeming was devastated. "Jack was already four months old and no one had suggested to us that he was blind. It hit me like a bombshell. I was on my own because my husband was at work. The whole interview took about five minutes. And then I was left on my own.
"I went into the centre of town and just sat on a bench and cried. I had Jack in my arms and I just kept thinking of all the things he would not be able to do. I looked at the pigeons and thought he would never see them; and I looked at the fountain and knew he would never see that. I also looked at the toyshop, and I thought what use would any of the toys ever be to him."
In fact, Jack, who is now two years old and starting nursery school tomorrow, enjoys his toys as much as any other child of his age. Mrs Deeming's predictions were far too pessimistic, but they were bound to be, given the insensitive way in which she was told the diagnosis.
Now the Royal National Institute for the Blind (RNIB) has drawn up new recommendations to try to ensure that health professionals break the news of blindness or visual impairment to parents in the most sympathetic way possible.
The organisation, which carried out a detailed survey of 21 families' experiences in being given a diagnosis, knows that the way parents are told can have a long-lasting effect. "We carried out this survey because a study by the RNIB discovered that parents felt very unsupported at the time of diagnosis," says Issy Cole-Hamilton, its children's policy officer. "We want to campaign with ophthalmologists and other health professionals to achieve better practice."
The report, being published this week, recommends that: doctors should give the diagnosis with sensitivity and in private (some patients have been given the information in a corridor full of people); parents should be given a follow-up appointment with the same person within two weeks; all eye clinics should have immediate access to a support/liaison worker with whom the parents can talk at any time; and parents be given written information about their child's eye condition.
Patient groups and health professionals are beginning to recognise that although breaking bad news is always difficult, certain rules can make it easier both for the patient and the doctor.
The RNIB's recommendations, for example, mirror the recent guidelines produced by the Patient Involvement Unit at Mount Vernon Hospital, Middlesex, for giving a cancer diagnosis. These also emphasise the need for privacy and for written information about support groups, and a contact number for further questions.
Mrs Deeming, a 30-year-old hair stylist who lives in Atherstone, Warwickshire, with her husband, Martin, says: "Looking back, I really should not have been let loose straight after being given the news. I would have liked to have talked to someone. And I would have preferred to be in the hospital rather than on a park bench."
It was another four months before a consultant at the regional eye hospital provided the Deemings with a proper diagnosis of their only child's condition (optic nerve hypoplasia) and the reason for it (damage in early pregnancy, possibly a virus).
Teresa and Michael Newham can bear witness to the importance of privacy at diagnosis. When they were told that their 11-year-old daughter, Rebecca (then aged eight), had a rare genetic condition known as stargardts, which meant that she had only peripheral vision, they were sitting in a corridor of examination rooms, with a lot of people watching them.
"Rebecca had been having trouble with her sight for a while, but one ophthalmologist had told us she was just shortsighted," Mrs Newham recalls. "When the doctor gave us the diagnosis, I asked: `What is the cure?' He said: `There isn't one.' The floor just opened up beneath me. It would have helped if we had not been in full view of everyone."
Mrs Newham, who is a designer from Pinchbeck, Lincolnshire, says: "Some printed material about the condition would also have been useful. If I had only been told then some of the things that I know now, I would not have been so upset."
By photocopying and enlarging work for Rebecca, the Newhams have helped her to pass the 11-plus, which still exists in their area, and go on to grammar school. But learning about suitable aids and disability allowances has been a struggle.
The RNIB hopes that if at least some of their recommendations are taken up by the professionals, it will not be such a struggle for parents in future.
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