Ten years after the Bristol babies scandal, patients are still being denied the information they need to make an informed choice about heart surgery, a Guardian investigation has discovered.
The Kennedy inquiry into the deaths of babies at the Bristol Royal Infirmary, following disciplinary action against two surgeons whose success rates were not as good as colleagues at other children's heart units, prompted the government to demand in 2001 that adult heart surgeons make their death rates public.
The information should have been available by last year, but many hospital trusts are still not collecting adequate data.
The Guardian used 36 simultaneous applications under the Freedom of Information Act to extract for the first time national data about the individual mortality rates of all cardiac surgeons practising in the NHS.
The exercise, unprecedented in its scale, has found:
· One London teaching hospital where trust managers and the cardiac consultants cannot agree among themselves about which surgeon should be assigned responsibility for particular deaths;
· Hospitals which diverted money the government allocated to improve record-keeping and risk assessment;
· Hospitals that are unable to give risk-adjusted data, which would reveal to patients the proportion of high and low risk operations undertaken by surgeons.
The disclosure of individual surgeons' mortality data is the first step towards admitting the public into the secret garden of the medical profession, which would allow patients to exercise informed choice on the basis of knowledge about doctors' clinical records.
Heart surgeons have been in the spotlight because of the Bristol scandal, which led to the striking off of two doctors. The GMC investigated the cases of 53 babies, of whom 29 died.
Choice will be the buzzword of the health debate at the general election, but although patients may be able to choose the hospital with the smarter waiting rooms or larger car park, they are nowhere near getting real information about their consultant's results.
Many doctors object to the publication of death rates, for fear that some will be stigmatised as worse than others, when the truth may be that they take the harder cases, where deaths are more likely.
They cite New York, where the publication of heart surgeons' mortality figures caused some to shy away from the riskier cases.
But publication has been inevitable since Alan Milburn, who was then health secretary, told the Society of Cardiothoracic Surgeons in 2001 that he wanted the data in the public domain by last year. The society has worked hard to collect and validate risk-adjusted data that allows for the likelihood of some deaths, but has been frustrated by the low priority given to the exercise by some trusts.
The Guardian's two-month investigation reveals that trust figures show all heart surgeons but one are within the limits of acceptability defined by the society - their death rates do not stray far from the average. Many are excellent. In the case of the one outlier, there are serious questions around the data collected by the trust. The surgeon's own figures - which we have used - put him well within the norm.
It has emerged that the trust, St Mary's in London, has not kept separate figures for the operations carried out by visiting locums, covering for holidays. These have been included in the deaths for consultants who were miles from the operating theatre at the time. St Mary's chief executive, Julian Nettel, acknowledged that their data collection was not as good as it should be.
"This is perhaps the first time that data of this detail relating to individual consultants' performance is being exposed in this way," he said. "Clearly we, as a hospital, and other hospitals are going to be much more specific as to where locums are involved. It is an unfortunate fact that we haven't been able to separate that out."
If there are any problems during an operation, however, he stressed that there would be a review.
Bruce Keogh, president of the Society of Cardiothoracic Surgeons, said it was unacceptable for a trust to be unable to deduce who was the surgeon in charge when a patient died. "It is utterly inexcusable that any organisation entrusted with such major surgery cannot immediately identify who has done how many of which operation," he said. Some trusts with good information have chosen to go public in the light of the Guardian's inquiries and put their surgeons' results on their website.
Four trusts from the north-west sought fast-track publication in the British Medical Journal. Ben Bridgewater, consultant cardiac surgeon from the South Manchester University Hospitals NHS Trust and lead author of the BMJ paper which gave 25 surgeons' results, said that there had been "an unrelentingly positive message" from the new patients he had seen since.
Mr Bridgewater, who has long been involved in clinical audit, said it was disappointing that some heart units could not produce robust data. "It must be very difficult for those units to provide satisfactory clinical governance," he said.
The Guardian invited every trust to supply risk-adjusted data as well as the basic death rates for surgeons.
Prof Keogh said the publication of the data obtained by the Guardian should be "a wake-up call" to those trusts that have so far dragged their feet. The society does not support the publication of raw death rates, but warns that trusts without risk-adjusted data are now in an exposed position.
"The use of non risk-adjusted data should be a wake-up call to those trusts that have not gone far enough in investing time, effort and money into collecting the sort of data which will help us understand out practice," Prof Keogh said.
