Paul and Valmai Bradley found the funeral of their daughter Bethan, six, who died after heart surgery in Bristol, almost impossible to bear. In March, six years on, they discovered they had not buried all of her. Shocked and distressed to find that organs had been removed from her body without their knowledge, they feel that their child has been treated with contempt. "There are no words to describe the feeling," Mr Bradley told the inquiry into the deaths of child heart patients at the Bristol Royal infirmary. "It might be considered over the top, but we cannot help how we feel: we felt it was criminal, what was done - that it was contemptuous to the dignity of our child, that her body had been, as we see it, invaded and body parts stolen."
Ian Kennedy QC, who is chairing the inquiry into Bristol heart surgery, this week condemned the "arrogance born of indifference" of doctors who, with the best of motives, removed organs from children's bodies without telling parents what they intended to do or what they had done.
The inquiry had heard evidence relating to what took place in Bristol before 1995. Professor Kennedy's words drew fierce protests from the British Medical Association.
"I am not defending practice that has been obviously indefensible, but this idea of non-sympathetic doctors is deeply damaging to the profession and therefore deeply damaging to patient care," said Ian Bogle, chairman of the BMA council.
It was the second body blow to the caring image of the profession in a week. On Monday doctors at North Staffordshire hospital were condemned by a report from the Griffiths inquiry for failing to give parents proper explanations before putting their premature babies into trials for a new type of ventilator. Allegations that consent forms were forged have gone to the General Medical Council.
The image of remoteness, a doctrine of arrogance, was further fostered by this week's disclosures about Steven Harley, who had to endure 22 examinations by 12 different doctors before he was correctly diagnosed as having tongue cancer - too late for surgery.
One doctor allegedly told Mr Harley, after a six-hour wait in casualty at Barnsley district general hospital on New Year's Day, that he should "go home and get a life". The hospital has refused to apologise for the remark, saying it was an epithet meant to reassure him.
But according to the medical institutions - the royal colleges, the BMA and the GMC - the patrician doctor is an endangered species, flushed out of his ivory tower by scandals such as the one at Bristol.
The government has used Bristol as a stick to beat the profession with. Doctors' organisations have embraced changes such as appraisal, inspection and a new consumer-led NHS culture. They say arrogance may linger on in the odd cobwebby corner but is largely a thing of the past.
But Joyce Robins, who with Roger Goss runs the independent pressure group Patient Concern, said: "The one thing that comes through all the time from patients who are complaining is the arrogance of doctors. They will put up with waiting for hours, but let the doctor make them think they are two inches tall and that really gets them going.
"Guidelines are fine, but what is practice in the consulting room is a very different matter. We have people saying all the time I never signed that [consent form]. We hear of people signing consent forms on the trolley after a pre-med. I have never heard of anyone being given a copy of their consent form. It is the only legal document like that."
Recently she was a guest on a television programme. "A patient told a sad story of something that happened to her when her son died and how the doctors behaved. A surgeon from a top teaching hospital said he did not believe a word of it." Afterwards Ms Robins told the surgeon she had heard many such stories and could not disbelieve them all. He replied, she said: "That's because you are a silly woman representing a stupid, ignorant section of society."
On another occasion, she went to a consultation with a friend diagnosed with cancer. "She said to the consultant: 'What symptoms have I got to expect in the short term?' He said: 'I won't tell you because you will start imagining them.' This is a professional woman, perfectly capable of taking it in."
In the British Medical Journal last month, Shah Ebrahim, professor of the epidemiology of ageing at Bristol University, wrote of the profession's continuing disrespect for age: "Our attempts over the past three decades to produce humane doctors and nurses, capable of responding to patients' needs regardless of age, have not been rewarded. Medical students still rejoice in their stereotypes of 'geriatric crumble' and 'gomer' [get out of my emergency room] patients."
The Downs' Syndrome Association recognises that attitude. Its complaints about treatment of patients and parents at the hands of doctors at the Royal Brompton hospital are being investigated.
Families are devastated by unfeeling comments from medical staff. "We won't bother with glasses as he is not what you would call university material," said an ophthalmologist of Tom, 13, according to an association report last year. Another told the parent of Stephen, 11: "The problem with these children is they are either hyperactive or pathetic." Some children have been denied medical treatment such as heart surgery which might give them a longer life.
Peter Hawker, chairman of the BMA consultants committee, is part of a generation brought up in the 1960s and 1970s which does not have the patrician attitudes he accepts linger on among the older generation. "I feel quite passionately that we have seen and are seeing an almost sea-change," he said. His generation was "much more attuned to looking after patients". "I talk about people, not patients," he said. "I don't treat disease, I look after people who have illnesses.
"Some attitudes do come across as a little bit of arrogance. Sometimes it is from the best of motives. Some of my colleagues do feel that they have to try to protect their patients. I think that is going, because people do come in and want to know."
Dr Hawker is a gastroenterologist at Warwick hospital with a special interest in the palliative care of oesophagal cancer. Two or three times a week he may have to tell a patient that he or she has cancer.
"I'm often talking to an elderly couple," he said. "Everything they have worked for and the retirement time they were planning together: you are leading them to accept that it is not going to happen. The day I find it easy to have those conversations I am going to stop having them, but there comes a time when you have to put in a bit of a distance or you would break down yourself, and that doesn't help anyone."
The distress caused at Bristol and the other 42 hospitals that have removed organs without discussion, and at North Staffordshire, where procedures for obtaining consent were inadequate, will lead to guidelines and possibly a change in the law on clinical trials. But it may take a few more years before the last of the old school of doctors has retired and the modern doctor-patient relationship prevails.
