“The progress made has been phenomenal and we are delighted that in line with our recommendations, as of April 2013, there has been a 50 per cent increase in deceased organ donation.”
A seemingly innocuous press release celebrating a rise in the number of dead organ donors has sparked a bitter row about how we cut waiting lists for transplants – and the use of statistics in public debate.
The head of the government’s Organ Donation Taskforce hailed “significant and consistent increases in organ donation over the last five years”, but warned that there was still much progress to be made if we are to make organ donation “a routine and accepted part of UK society”.
But the former Lib Dem MP and doctor Evan Harris took to Twitter to complain about the use of figures. He told FactCheck the whole story amounted to “an abuse of statistics and the misleading of the public”.
In 2008 levels of organ donation were low and had been flatlining for a decade. Only 13 people out of a million were organ donors, compared to 35 in Spain. More than 90 per cent of people said they were in favour of donation, but only 26 per cent of people were registered donors.
And all the while the waiting list of patients desperate for transplants grew.
The Organ Donation Taskforce published this report in January 2008, making 14 recommendations and setting out a target to improve matters.
The wording of the target is vague.
Elisabeth Buggins, the chair of the taskforce, put it like this in her introduction: “A 50 per cent increase in organ donation is possible and achievable in the UK within five years.”
Does an “increase in organ donation” mean a rise in the number of donors or in the number of transplants they make possible? It’s not clear, although other bits of the report suggest the latter.
Elsewhere, the report says: “A 50 per cent increase in donation would enable an additional 1,200 transplants a year”. Phrased like this, and using these numbers, this looks like the target relates to the numbers of organs getting through to patients, not the number of donors.
Why does it matter?
Because if the target was for transplants not donors, we’ve missed it. The number of donors has gone up by 50 per cent since 2007/08, but the number of transplants that came from those dead bodies only went up 30 per cent.
The plan was that if we missed the 50 per cent target in five years, we would revisit the controversial option of changing the law in favour of “presumed consent” – assuming that people do want their organs used after death unless they specifically say otherwise.
This idea was heavily discussed and attracted the support of the then prime minister Gordon Brown, only to be effectively squashed by the Organ Donation Taskforce in a second report in November 2008.
The taskforce commissioned a group of academics to review the evidence from countries that had tried presumed consent. The researchers concluded: “The available evidence suggests that presumed consent is associated with increased organ donation rates, even when other factors are accounted for.
“However, it cannot be inferred from this that the introduction of presumed consent legislation per se will lead to an increase in organ donation rates.”
Despite this, and the fact that in the most recent survey, 64 per cent of the public said they were in favour, the taskforce came down firmly against introducing presumed consent in the UK, saying it was “not confident that the introduction of opt-out legislation would increase organ donor numbers, and there is evidence that donor numbers may go down”.
In its second report, the taskforce said presumed consent should be reviewed in five years’ time (that’s now) “in the light of success achieved in increasing donor numbers”.
Well, the prediction of success has come true, but only if you measure it with the easier target of increasing donor numbers.
By the time of the second paper, the target was explicitly set out as a 50 per cent increase in the number of donors. But was this the original target or were they trying to rewrite history?
Dr Harris told us: “The wording in the first report was not ambiguous. It was about donations/transplants. The wording was sloppily (or sneakily) changed in the second report.
“My knowledge of the field leads me to believe that they well know the difference between donation and donors and knew what they were doing. The first scenario (sloppiness) is utterly unacceptable for the NHS anyway. Lives are at stake.”
Ms Buggins said she accepted the original target was ambiguously worded but insisted the plan was always to measure success by an increase in donors not transplanted organs.
She told FactCheck: “It talks about donations rather than donors or organs. You can say it’s either-or, but all of the debates in the task force were about donors.
“The thinking was never: ‘Let’s massage this because we are so against presumed consent that we are going to do anything possible to avoid reopening the debate.'”
She said the taskforce had kept an open mind about presumed consent but had finally been persuaded it was a bad idea after looking at all the evidence.
A spokesman for NHS Blood and Transplant rejected any notion of misinformation, saying the health service has always been transparent about organ donation, with figures published on a weekly basis.
There’s no doubt that the details of the all-important 50 per cent target were left vague and ambiguous when it was first set out.
But this is not hard evidence of subterfuge by health chiefs. And this week’s news is fundamentally good: an increase in donors and transplants; a fall in the number of people on waiting lists; more lives saved.
The bigger question is whether we could do even better if we introduced presumed consent.
Dr Harris thinks the target was deliberately changed to shut down this debate – an accusation strongly denied by those in charge of the campaign to increase organ donation.
One thing all parties agree on is the fact that we still haven’t cracked the organ donation problem. An estimated three people a day are dying while waiting for a transplant.
By Patrick Worrall