Focus: Health - The heart of the matter

Serious allegations have been made against surgeons at a top London hospital. How true are they?

On 3 June an anonymous letter arrived at the offices of Private Eye in Lon- don. It was received by the doctor turned broadcaster and writer, Phil Hammond, who contributes the satirical magazine's fortnightly medical column under the pseudonym "MD".

It was Hammond who, through the MD column in the early 1990s, first highlighted concern over death rates among children undergoing heart surgery at the Bristol Royal Infirmary, which is now the subject of one of the biggest and most expensive public inquiries in NHS history. That, too, was triggered by an anonymous letter, so Hammond was not slow to recognise the potential significance of the new one.

The letter, also sent to Brian Langstaff, independent counsel to the Bristol inquiry, made serious allegations about London's premier heart hospital, the Royal Brompton in west London, of a very similar kind to those made in Bristol. It alleged that success rates were low, especially for hole-in-the-heart repairs, that Down's syndrome children, who have a high incidence of heart defects, were being discriminated against, that parents had not had the risks of treatment properly explained to them and that some of the doctors at the Brompton, none of whom were named, had a high-handed attitude. This last allegation may turn out, when all the facts are known and the dust has settled, to be the most significant.

The letter, which is believed to have been sent by a nurse, claimed the surgeons' success rates were "much worse than I am used to". It is understood some crude data were enclosed on the death rates of patients of three of the Brompton surgeons but, at first glance, these did not seem to bear out the allegations.

Hammond and Langstaff forwarded the letter independently to Mark Taylor, chief executive of the Royal Brompton and Harefield Trust, who ordered an immediate investigation. On 10 June he told the Brompton's staff that he had set up an independent review into the allegations but that there was no need to change practice while it was under way. Two paediatric cardiologists from outside London - Stewart Hunter, former president of the British Paediatric Cardiac Association, from Newcastle and Mike Goodman from Edinburgh - were asked to conduct the review.

Mr Taylor decided not to make the inquiry public, a high-risk strategy given that all the Brompton's staff knew of it. When the story was leaked to a Sunday newspaper six weeks later, on 1 August, it unleashed a storm. Grieving parents told harrowing tales of the loss of their children and claimed misdiagnosis, neglect and poor treatment.

Whether any of these allegations are true must await the outcome of the inquiry. The latest set of clinical indicators for hospitals show the Brompton has one of the highest death rates, with nearly four per 100 dying. However, patients undergoing heart surgery are at high risk of death and the Brompton took on some of the most difficult cases. The trust, which includes Harefield Hospital, said it carries out 600 operations a year on children and 100 a year on Down's syndrome children, whom its anonymous whistleblower accused it of discriminating against. It issued a robust response: "We are confident our surgical performance is of the highest standard and will stand up to any investigation," a spokesman said.

There was, however, a revealing rider to this comment. "The question of one surgeon's attitude in dealing with Down's syndrome patients is another matter, although that may have sparked the general complaint," the spokesman added.

The implication was that the hospital's anonymous accuser was driven by moral concern over the treatment of disadvantaged patients. But the wider issue of the doctors' manner in dealing with all patients emerged as a key source of complaint at a press conference attended by seven of the families last week.

Several parents described how they had felt belittled and humiliated for years by consultants who had shown them little consideration and scant respect. Julie Boyes, whose daughter Hannah, 13, has been a patient at the hospital all her life since undergoing a hole-in-the-heart operation when she was nine weeks old, said of one consultant: "It was not just his attitude. He just wouldn't answer you. You would ask him a question and he just wasn't interested. I kept thinking there must be something wrong with this guy. How could he behave like that?"

Mrs Boyes, 31, who with her husband, Peter, has three other daughters, described hearing on the TV news that the hospital was being investigated and feeling relief that at last someone would be made to listen. "I thought: Oh wow - all these years I have been saying this."

A support group formed for the parents claims 40 families have made contact, many driven by grief and despair over the way they felt their own needs were neglected. Josephine Ocloo, a university lecturer from north London and organiser of the group, whose own daughter Krista had narrowed arteries and died suddenly two years ago aged 17, said: "My consultant is incredibly arrogant. Why didn't he give me the information [about the risks to Krista]? Maybe he was too busy or maybe he felt it was not my business."

Some of the parents felt it was because they were young and working class that they didn't get the time and the attention they needed. Ms Ocloo, a single parent, said: "I can't help feeling that a stereotypical middle- class family might have been treated better. I have never been able to work out why they treat you in such a shoddy fashion."

The trust has pledged that all families concerned about the treatment of their children will be included in the review. But it may prove difficult to establish whether, if a higher death rate is found for any of the specialists, it is the result of a statistical blip or evidence of a worrying trend.

Cardiac surgery on children is a high-risk specialism. But an estimated 80 per cent of babies born with heart defects would die within a year without treatment. Parents therefore face an agonising choice: whether to resist treatment and enjoy their child in the knowledge that their life will be a short one, or gamble on a high-risk operation that could extend it.

There are around 200 heart surgeons in the country and 20-25 who specialise in children. Growing concern at the number facing allegations of incompetence - one in ten have been the subject of investigations during the course of their careers - led the Society of Cardiothoracic Surgeons to agree 18 months ago to collect individual surgeons' death rates, the only surgical specialism to do so, in order to have early warning of killer surgeons. In certain US states, such as New York, individual surgeons' death rates are collected and published annually. In the UK, the data are to be collected anonymously, but any surgeon causing concern who fails to identify him or herself will be "outed".

However, finding operations that allow paediatric surgeons to be compared on a like-for-like basis has proved more difficult than expected. Leslie Hamilton, consultant cardiac surgeon at the Freeman Hospital in Newcastle, said: "Paediatric heart surgery is the most technically demanding of all surgery. Our results have improved but it is in the nature of the children we deal with that there will always be deaths."

CASE HISTORY 1

Kept in the dark about her child's condition

KRISTA OCLOO was a healthy teenager who wanted to be a doctor. She was studying for A- levels, was a keen athlete, and had a twin sister. One night in December 1996, her mother, Josephine, found her dead in bed.

"It was horrendous. I didn't know anything was wrong. She had been feeling tired but we thought that was because she was working so hard."

Krista had had an operation as a baby to correct a hole in the heart and had been monitored by the Royal Brompton ever since. Six months before her death she missed a check-up after the hospital omitted to contact her. The hospital acknowledges the error but claims it would have made no difference.

Josephine obtained a post- mortem report which showed her daughter had been suffering from sub-aortic stenosis and arrhythmia - narrowing of the arteries and dangerous fluctuations in the rhythm of her heart.

"I asked them why I wasn't told. They said patients have different expectations about the information they want. But Krista should never have taken part in competitive athletics. There was no treatment and diagnosis, and they allowed her to die."

An independent panel found nothing could have been done to prevent her death, but criticised the record-keeping and communication within the hospital.

Ms Ocloo contacted the hospital to let them know Krista had died. She was told someone would return her call. "No one contacted me until I made an official complaint in January and received their response in March. You lose your child and they don't even ring you."

CASE HISTORY 2

Fobbed off by arrogant doctors

JULIE AND Peter Boyes were teenagers themselves, aged 17 and 19, when their baby daughter, Hannah, was operated on at the Royal Brompton to correct a defect in the pulmonary vessels to her heart. When she failed to thrive they took her back to the hospital, but were repeatedly fobbed off, because, they believe, of their youth.

"Obviously we were quite inexperienced. Every year we said we were worried about her and every year they said she was fine. It got to the stage where we were frightened to take her back because we thought they were judging us on our parenting skills."

After five years a visiting friend who was a nurse said they had to do something. They took her back and finally persuaded the doctors to investigate. That revealed that she had the same defect on the right side of her heart as she had had on the left - an extremely rare occurrence.

Mrs Boyes said: "After five years of treating us badly they finally told us there was something wrong. My daughter had 900 tests and they still couldn't find it. It's incredible."

Hannah, now aged 13, had a second operation and has since remained well under the care of a different consultant who has treated the family with sensitivity and care. But for Mrs Boyes the humiliation of the years when her concerns were belittled has left deep scars. She considered legal action, and obtained a specialist's report.

"On one occasion the consultant gave me and my husband such a mouthful in front of all his students and visitors. I personally think it's the God factor. He walks around like he's someone fantastic. It is just his manner. He is the chief problem there. The parents are after him."