Heart doctors 'biased against Down's'

The allegations were made against the Royal Brompton hospital

An independent inquiry has found that a leading hospital discriminated against babies with Down's syndrome.

Parents whose babies with Down's syndrome were referred to the Royal Brompton Hospital in London had claimed that they were unjustly refused lifesaving heart surgery.

The inquiry report, to be published on Monday morning, says it has found evidence of discriminatory attitudes, and makes dozens of recommendations aimed at stamping this out.

However, it said that doctors did act in "good faith", believing that what they were doing was in the best interests of the patient, and did not intentionally discriminate against the Down's patients.

However, it reports, "that was, in our opinion, the effect of their approach."

We are pleased that the parents who have been through such a lot have been totally vindicated

Spokesman, Down's Syndrome Association

And the report clears surgeons at the hospital of more general allegations that their death rates were too high.

The "whistleblower" who made the claims about death rates is criticised in the report.

The inquiry panel, chaired by Ruth Evans, head of the National Consumer Council, has taken 18 months to produce the 400 page document, and taken evidence from dozens of parents.

Many claimed similar experiences - that the hospital was unwilling to carry out corrective surgery on the heart defects of Down's syndrome babies.

Delight over report

Some have accused the hospital of placing less value on the lives of Down's syndrome babies than other infants.

Penny Green, from the Down's Heart Group, which advises parents of Down's children with heart problems, said: "It has caused an incredible amount of distress among families.

"Living with the death of a child is very difficult, but I can't imagine how these families feel, seeing their child deteriorate, knowing that if they had gone somewhere else, their child may have had a chance.

"You have to accept that there was a problem in the past, and put things into place so it can't happen in the future."

A spokesman for the Down's Syndrome Association said she was "delighted" with the report.

She said: "Broadly, we would welcome all the recommendations made in the report. We are pleased that the parents who have been through such a lot have been totally vindicated."

The association said it was looking forward to working with the hospital to ensure all children with heart defects received the correct care in future.

One of the parents who contacted the inquiry was Maxine Hanson, whose son Ben was operated on at Great Ormond Street Hospital after doctors at the Brompton had recommended he wait five years for a similar operation there.

She said: "Hopefully the recommendations they have put forward will be a good thing. We have got our goal, which is to put the spotlight on this sort of discrimination."

Children with Down's can do well after heart surgery

While, in the 1970s and early 1980s, when success rates in paediatric cardiac surgery were generally much lower, there was a genuine debate about the merits of surgery on Down's syndrome children, subsequent improvements in techniques have made the issue more clear-cut.

There is no particular reason why a child with Down's syndrome and a heart defect should fare any worse either during or after a complex operation.

The Down's Syndrome Association spokesman said: "The debate over whether or not children with Down's syndrome were suitable for heart operations has been over for some time.

"The tide began to turn by the early 1990s. Discrimination is more through ignorance and lack of information."

The report makes it clear that when Down's syndrome patients did receive treatment at the Brompton, it was of equal quality to that received by any other patient.

The report has disappointed those who believe that, as a whole, the hospital's death rates in paediatric cardiac care were poor.

A review carried out by expert Professor Stewart Hunter has found no evidence to support this.

Results at the unit were as good, if not better, than at many other UK heart hospitals, he says.

However, Josephine Ocloo, who is convinced that poor care contributed to the death of her 17-year-old daughter Krista, denounced this finding as a "sham", and called on Brompton chief executive Mark Taylor to resign.

Approximately 40% of all children born with Down's syndrome, a genetic defect, have a heart problem, such as a "hole in the heart", and they make a large proportion of the children referred to paediatric cardiologists in the UK.