You lose your child and they don’t even ring you.”CASE HISTORY 2Fobbed off by arrogant doctorsJULIE 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. 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. 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. 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. Our results have improved but it is in the nature of the children we deal with that there will always be deaths.”CASE HISTORY 1Kept in the dark about her child’s conditionKRISTA 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. Leslie Hamilton, consultant cardiac surgeon at the Freeman Hospital in Newcastle, said: “Paediatric heart surgery is the most technically demanding of all surgery. 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. In certain US states, such as New York, individual surgeons’ death rates are collected and published annually. 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.

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. But an estimated 80 per cent of babies born with heart defects would die within a year without treatment. 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. 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. 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.

“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. 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. 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. 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. “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. 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 latest set of clinical indicators for hospitals show the Brompton has one of the highest death rates, with nearly four per 100 dying.