The UK government is commissioning an independent review of the National Health Service (NHS) Organ Donor Register following the discovery that details about donors’ wishes have been incorrectly recorded and confirmation of 21 cases where the wrong organs may have been taken from donors.
The NHS Organ Donor Register is administered by the NHS Blood and Transplant (NHSBT), a Special Health Authority that was established in in England and Wales in October 2005 to provide a UK-wide supply of blood, organs and associated services to the NHS.
When you join the Register you can specify which organs you are willing to donate and which you do not wish to donate. For example you could say you are willing for your internal organs to be used but not your eyes, skin or other external parts. You could say you are willing to donate your organs to patients who need transplants but not leave your body to science.
According to the BBC, the mistake came to light in 2009 when the NHSBT sent out letters to donors asking them to confirm information held about them in the Register. Many wrote back saying the information about their preferences was incorrect.
One such donor is Stephen Banks, who told the BBC that he filled in the organ donor details when he renewed his driving licence. He said he “ticked the options to donate all my organs apart from eyes”, but when he got the NHSBT letter he saw they had included his eyes in the list of organs he wished to donate.
Banks said he was shocked by the error as he had not asked for them to include his eyes.
The British Medical Association (BMA) told the press that this error could damage public confidence in the Register. BMA chairman Dr Hamish Meldrum said a review would prevent patients’ lives being put at risk:
“You want people to come forward and donate their organs in good faith so that people who have serious conditions can have their lives saved,” said Meldrum.
Dr Peter Friend, a Professor of transplant surgery at Oxford University, highlighted another avenue where loss of public confidence might affect patients. The final say about whether donors’ wishes are carried out rests with the donors’ families, and if they feel the information has been incorrectly registered they may decide to block all donation.
“If a family says ‘no’ for a donor who would have wanted it to happen, there are two or three avoidable deaths. It is a disaster,” he told the Telegraph.
The Register currently holds the records of around 17 million donors, of which it has now been revealed that as many as 800,000 of those who joined over the last 10 years may have incorrect information about donors’ wishes. It seems that the potentially affected records belong to donors from Scotland, England and Wales who registered via their driving licence application.
NHSBT have apologised for the error and put on hold potential donations from these donors.
They said in a statement that they have already corrected 400,000 records and that affected donors would be contacted to confirm their details. Anyone who does not receive a letter can be assured they are not affected, they said.
The NHSBT said they have identified “21 cases over the past six years, where the person has died and their preferences may not have been correctly recorded”.
They said in each case the family of the donor had consented to the donation but there is a chance it may not have been strictly in accordance to the donor’s wishes.
“We sincerely apologise for any distress this may have caused,” said the NHSBT statement, that also stressed nobody has been registered as a donor against their wishes.
The NHSBT said for the time being they will not be using the potentially affected records in discussions with donors’ families. The records will only be used once they have checked the information is correct in accordance with donors’ wishes, they said.
Health Secretary Andy Burnham told the BBC that he regretted the error and that a system was now in place to stop it happening again.
He said over the weekend that the government is asking Professor Sir Gordon Duff, of Sheffield University to carry out an independent review of the Register to find out how the mistakes occurred.
The Health Secretary said the mistakes appear to go back as far as 1999 and occurred in the transfer of data from the Driving and Vehicle Licensing Authority. In the meantime donor applications via the DVLA are suspended, he said.
Joyce Robins, the co-director of Patient Concern told the press that:
“This is a terrible tragedy for patients awaiting a transplant. Lives may be lost because people could be deterred from joining the register.”
She also pointed out that it was against the law to remove organs from the dead without their prior consent or the permission of their family after their death.
Shadow Health Secretary Andrew Lansley said consent should always be given and if that was found not to be the case, it should be fully investigated. He stressed it was important that people continue to donate.
This latest crisis has renewed calls for the current opt-in system to be replaced by an opt-out system.
According to the Organ Donor Campaign, ODC, a body formed by individuals with personal experiences relating to organ donation, 90 per cent of Britons claim they would donate their organs, yet only 25 per cent are registered donors.
The Liberal Democrat spokesman for science, Dr Evan Harris, said the mistake in the records is not the real issue: the real issue is the current opt-in system that ignores the needs of patients waiting for an organ.
He said this error highlights cases where relatives of donors may have given consent for organs to be removed because the records showed this was what donors agreed, when in fact they records were wrong.
But these numbers, said Harris, are “dwarfed” by the “number of refusals by relatives of donation where the donor would have wanted to donate but was not on the register”, according to a report the Guardian.
“Only with an opt-out register for organ donation, with a presumption of life-saving consent for those who don’t opt out, can the wishes of the vast majority who are willing to donate be respected,” said Harris.
According to the ODC the UK has one of the lowest organ donation rates in Europe: there are currently about 10,000 people in the UK waiting for a transplant, of whom 1 in 10 are likely to die before they get one.
For every patient who receives a donated organ there are 5 others on the waiting list, and demand is expected to rise by around 7 per cent a year.
Sources: BBC, Telegraph, NHS, ODC, Guardian.
Written by: Catharine Paddock, PhD