James Meikle, health correspondent 

Parents ‘should get tapes of talks with doctors’

Parents of seriously sick children should be given tapes of key consultations with hospital doctors to help end the "paternalistic" culture of the medical profession and improve trust, an inquiry said yesterday.
  
  


Parents of seriously sick children should be given tapes of key consultations with hospital doctors to help end the "paternalistic" culture of the medical profession and improve trust, an inquiry said yesterday.

Families should also receive detailed letters about their children's care within 20 days of the meetings and be informed of any changes to diagnoses and treatments.

The recommendations of the independent inquiry are expected to shock hospitals, where doctors already face pressure to "tell all" and abandon hierarchical attitudes towards colleagues and patients. The advice may be seen as a threat to their professionalism.

The inquiry into children's heart services at the Royal Brompton and Harefield hospitals in London, found a "serious breakdown in communication and trust" between some parents and doctors. It also accepted that doctors' behaviour towards families of Down's syndrome children led parents to view the treatment offered as discriminatory.

Some families had alleged that they were encouraged to believe surgery could make it more difficult to look after their children later in life and that they were not told fully about the risks of treatment.

The recommendation to tape consultations and send parents copies of letters from consultants to GPs, was among 102 directed at the trust.

The inquiry chairman Ruth Evans, former head of the National Consumer Council , said her team hoped other hospitals would "implement recommendations, where they are needed, across the board."

Health officials yesterday admitted it would be difficult to introduce such procedures nationwide for only a few categories of patients and operations. Some sources also said some trusts were wary of anything that could be used in litigation. But there could also be benefits in that families, overwhelmed by the seriousness of the consultations, would not otherwise take in all the doctors said. The British Medical Association said that tape recordings should not be seen as a substitute for patients and parents to have further face-to-face conversations.

The report also makes 17 further recommendations including training for all health professionals in ensuring "non-discriminatory" policies and practices, and a national system for reporting serious injury from child heart surgery.

"There is no place for discrimination in the NHS and all patients and their parents must be treated fairly, on the basis of clinical need and with respect and dignity," a health department spokesman said.

The inquiry had found that Down's Syndrome children with heart conditions were "less favoured" for operations at the Royal Brompton. But doctors were not discriminatory in the treatment delivered.

The inquiry, set up in 1999, investigated 49 cases of children treated at the two hospitals since 1987, 14 of them Down's syndrome sufferers. Many of the children died or had suffered serious brain damage following surgery .

Ms Evans said members found "a culture of paternalism that makes families frightened and disempowered". She added: "Parents are entitled to more information, better communication and more consultant time when making critical decisions."

The chairman of the trust, Sir Philip Otton, expressed "regret" to parents but added that there had been considerable debate about the appropriate method for treating children with Down's syndrome and heart disease.

Disappointed parents called the inquiry a "sham" and a "cover-up" and demanded a public inquiry.

Margaret MacRae, whose teenage son David died after treatment at Harefield, claimed the surgical interventions would have led to a public outcry if they had occurred in an animal laboratory.

 

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