Organs removed without consent after IT blunder
Bereaved families will be told that organs were removed from their loved ones without consent after a blunder affecting Britain’s donor register.
By Patrick Hennessy and Laura Donnelly
The Telegraph
10 Apr 2010
The records of 800,000 people were affected by an error that meant their wishes about the use of their organs after death were wrongly recorded.
An investigation has found that 45 of those for whom wrong records were stored have since died – and in approximately 20 cases organs were taken where consent had not been given.
Andy Burnham, the Health Secretary, said today he deeply regretted the distress caused to bereaved families of people whose organs were removed without consent following a huge blunder affecting the UK donor register.
He said: "I want to assure the millions of people on the organ donor register that they can have full confidence that only their accurate information will be discussed with their families, and that their wishes will be respected.
I'm not sure why people should "have full confidence" in a system where a huge blunder was made on the words of a politician ...
"I have asked NHS Blood and Transplant to take immediate steps to identify and contact all affected families. This process is under way and will be completed as quickly as possible.
Considering how poorly the NHS has managed its health computing on a national scale, I would not be reassured.
"I have asked Professor Sir Gordon Duff of Sheffield University to carry out a review to find out why this has happened, prevent mistakes like this being made again and ensure all necessary steps are taken to maintain confidence in the organ donor register."
Donors can give permission for any of their organs to be taken, or provide more specific agreements. A glitch in the system more than a decade ago removed the distinctions expressed by people.
... The error occurred in 1999, when data held by the Driver and Vehicle Licensing Agency, which includes a request for consent in applications for a driving licence, was transferred to the organ registry.
Allow me to reveal how this 'glitch' that removed critical data happened: careless, cavalier, undereducated, arrogant, overempowered IT personnel in HIT leadership roles.
Allow me to reveal how the 'glitch' was not discovered in over a decade: careless, cavalier, undereducated, arrogant, overempowered IT personnel in HIT leadership roles.
Joyce Robins, from the pressure group Patient Concern said: "This Government has got an absolutely dreadful record when it comes to data, but it is absolutely horrific that such sensitive details were handled in such a careless way."
If the dead are treated this poorly, what does this say about the wishes of the living?
The NHS is about to contact approximately 20 families who allowed organs to be taken from their relations after being misinformed about what consent had previously been given.
It is illegal to remove organs without prior consent from the person who died or their next of kin. A view is sought from relations before decisions are taken. In the cases where errors were made, it is understood that families were asked for permission, but their decisions were based on misinformation about the wishes of their relations.
Unbelievable.
After detecting the fault last year, NHS Blood and Transplant, which holds the organ donation register, was able to correct 400,000 of the flawed records. But 400,000 more people will shortly be contacted to be told that the wrong information may be held about them, and asked to provide consent again.
Just a little 'glitch', affecting nearly a million people. Nothing for the IT personnel to be concerned too much about.
Until fresh consent is obtained, organs will not be taken from any of those people in the event of death.
Let's hope the delays in organ availability don't create more dead people.
The mistake came to light when NHS Blood and Transplant (NHSBT) wrote letters to new donors thanking them for joining the register, and outlining what they had agreed to donate. Respondents wrote back to say the information was wrong.
Sick, living patients might not have the opportunity to tell their doctors the information in the eRecord has been corrupted or erased.
The point of this case is that the utmost care needs to be used in managing health data and healthcare information systems. The results of errors are not boxes of candy bars shipped to the wrong location.
As long as the culture of IT dominates in healthcare, IT being characterized by an arrogant, recalcitrant, recidivist culture whose failure rates are downright terrible even on non-healthcare projects, I'd frankly rather use paper.
Paper doesn't suffer 'glitches' that alter hundreds of thousands of fields of critical information en masse.
-- SS
