It was May 29 1998 and spring sunlight was streaking into the sombre great hall of the General Medical Council, where the formidable portraits of past presidents look on. It should have been a moment of catharsis for the parents of babies who died or were brain damaged during open heart surgery at the Bristol Royal Infirmary. The chief executive and a surgeon were struck off and a second surgeon suspended for failing to tell parents that their children might have lived if their operations had been carried out somewhere else. Finally, the BRI doctors had been brought to book.
As the verdicts were read out one man broke the hush in the hall. Up in the gallery, Jim Stewart stood up and denounced the medical establishment, accusing them of a cover-up and of conducting a "sham of a hearing". Few who heard him that day have forgotten it.
Jim and Bronwen Stewart's baby did not die. Ian is now nine. James Wisheart, his heart surgeon, had been accused of causing his severe brain damage, but the GMC dropped the charge during the hearings to concentrate on the deaths. From that day to this, say the Stewarts, there has been no investigation of Ian's case, no explanation and no apology from the NHS, apart from a brief letter admitting liability.
The longest GMC investigation ever, followed by a three-year public inquiry, did nothing to satisfy Jim Stewart. If these massively expensive tribunals were intended to help the parents, alongside the political objective of exposing the failings of the NHS and driving the government's reform agenda, then in this one case, at least, they sadly failed.
"The GMC and the public inquiry add to the enormous hurt I feel. If they had been genuine they might have allowed for some kind of closure," he says. "Ian is in the condition he is in because we were deceived and lied to and it is all we have ever had from them right the way through and it continues to this day.
"Emotionally this never ends. When it is my son's birthday or my other children's birthday, I cry. These are no longer the joyous occasions they were. When I push him in his wheelchair and my other children are running, I cry because he will never be able to run. I wake up at night and I can't get back to sleep, I'm so angry at how we were deceived."
He speaks calmly but in a voice as taut as a wire in the house in Sidmouth where the peaceful view across to the bay is disturbingly at odds with his thoughts on the doctors who treated his four-month-old baby son. "I would like to kill them but I have other children. I sometimes think, if I could pay them back an eye for an eye I could find some solace. I sometimes think I could happily sit in jail.
"What was done to my son was not an accident. We were deliberately lied to. People knew for years right at the highest level how bad the problems were and nothing was done."
Ian Stewart, the only acknowledged survivor of the Bristol tragedy, is an attractive little boy, with a mop of light brown hair and a sweet, lop-sided smile when his mother tickles his hands or covers his cheek with kisses. He is nine, but he will never stand, never speak and will need somebody to care for him, night and day, for the rest of his life.
Ian had a congenital heart problem which needed surgery before he was six months old. The Stewarts are Australians - Jim was a very successful accountant in the mining industry. They could have flown to Melbourne or anywhere else in the world if they had been told Ian's chances would be better. As it was, they had heard only that Bristol was a centre of excellence. "Ian went in like a normal little baby," says Jim. "He came out totally destroyed. As soon as he came round and opened his eyes, we knew right then. It is something I will never forget, that incredibly empty look he had."
It took a week before the neurologist confirmed that Ian was severely brain-damaged. But nobody would tell them how it had happened or admit any fault. The Stewarts went back to Australia, but 18 months later returned, unable to live without knowing what had gone wrong.
They had to fight every step of the way. In 1995, with four other families, they started legal action and asked the BRI for Wisheart's brain damage and mortality figures in operations prior to Ian's. The trust refused to give them. In September 1996, the high court ordered that it must. The trust again refused on the grounds of patient confidentiality. They went back to court and in September 1997, the high court said the trust must obliterate the names but hand over the figures. The trust then claimed it did not have such records. Then in 1998, when the case was before the GMC, Wisheart told the hearing that he kept log books of all his operations on a shelf in his office. Another letter to the trust brought the reply that the information was the surgeon's private property, even though it related to NHS operations. Eventually in June, after threats to take action to have the chief executive jailed, the log books arrived.
They revealed that Wisheart had carried out 11 truncus arteriosus operations before Ian's, and that nine babies had died. The Stewarts later discovered that at least one of the other two was brain-damaged. In December came the trust's admission of liability. It said that the Stewarts had been misled over the risks of Ian's operation and that the trust recognised that if they had been told his true chances at Bristol, they might have chosen to go to a different centre.
The public inquiry established under Sir Ian Kennedy, QC, had the broadest of all possible briefs. The reforming Labour government, with the medical profession on the back foot because of the failings of Bristol, gave Kennedy the chance to write a blueprint for change to the whole hospital system - and he took it. His report is huge, impressive and carefully considered in its tone. It has some trenchant criticism of decisions made by some of the main players in the tragedy, but while families were encouraged to tell their stories in considerable detail and the doctors and the trust to comment, Kennedy never intended to rule on what happened in individual cases.
For most of the parents of babies who died, the mammoth inquiry report provided some sort of closure if only because the spotlight was switched off. They could try to move on. But Jim and Bronwen Stewart turned their backs on the inquiry after they were not given permission to have their own separate legal representation. They rejected the opportunity to give evidence and make public their case against the doctors.
The couple are now enmeshed in litigation to decide on the levels of compensation needed to pay for a lifetime of care for their son. The tangles of the legal system have, if possible, deepened the bitterness they feel. Four years on from the trust's admission of liability, they are still struggling towards a settlement. The Stewarts blame the NHS litigation authority (NHSLA) and its lawyers for the delay. The authority says its hands were tied until the Stewarts formally sued the trust in February.
"The problem we were left with was that nobody made a claim against the trust," said a spokesman for the NHSLA. "Until somebody tells you what it is they require by putting together a schedule of damages, you can't react to that." In March, the Stewarts unilaterally handed over all their expert reports to the NHS lawyers on the understanding, they say, that they would see the other side's reports within three months. Last week, more than six months down the line, a court refused the NHS lawyers any more time and ordered that they should disclose their documents to the couple. Finally, nine years after Ian's operation, the two sides have met to discuss the details of the settlement.
The anger, hurt and alienation the Stewarts feel will not have made it easy for the NHSLA, but their feelings are the result of years - in their eyes - of evasion and stalling. Reform of the NHS complaints procedures and moves towards mediation rather than litigation are supposed to be under way, but there are few signs of real progress yet. The national audit office last year highlighted "the enormous human and financial costs of clinical negligence". At that time, average claims against the NHS were taking over five years to resolve and as of March 2000, the report said, there were 23,000 outstanding with a net value of £2.6bn. In the NHS summarised accounts for 2000-1, the NAO upped the estimated cost of settling future claims to £4.4bn. In nearly half the claims settled in 1999-2000, the lawyers' bills were higher than the cost of the settlement.
There is no doubt that the Stewart case is an extreme example of what can go wrong in the way the NHS deals with disastrous mistakes, although every case is harrowing to those involved. The government has launched some major initiatives to encourage the reporting of errors, improve auditing and raise standards, which may reduce the numbers of people fighting to find out what has happened and then get redress in the long term. But in the meantime, there are many unhappy families out there, struggling for years to get to the truth, an apology if they are lucky and, eventually, compensation.
