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How can the organ donor register restore trust?

09:31 UK time, Sunday, 11 April 2010

The government has promised an independent review of an NHS blunder after 21 organs were wrongly removed. Will this restore trust in the organ donation system?

Up to 800,000 people on the UK donor register may have had their wishes about the use of organs for transplant wrongly recorded.

Health Secretary Andy Burnham claims a new system has been put into place to prevent the error from happening again. NHS Blood and Transplant says it is carrying out an urgent investigation.

Do you have confidence in the organ donor register? Will these errors stop you from donating? Have you been contacted by the NHS to confirm your donor preferences?

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Comments

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  • Comment number 1.

    Lets hope this mess will not cost lives.

    On a related issue:

    "Whilst 90% of people say they support organ donation, just 27% have joined the NHS Organ Donor Register" (NHS Director of Organ Donation in 2008). Relatives then still have the option (rightly or wrongly) to refuse donation upon death making the effective percentage of donors even smaller.

    Surely on OPT OUT system is the way forward. Yes, it will possibly upset the very few who don't want to donate but don't manage opt out but THE VAST VAST MAJORITY WILL BENEFIT.

  • Comment number 2.

    Is it an NHS blunder, though?

    It appears that the problems arise with data trasmitted from DVLA, who are a byword for poor data handling, coupled with a tendency to cover up (to the extent of tampering with records) when challenged.

  • Comment number 3.

    If people have gone to the extent of joining the donor register surely it doesn't matter what organs are used after they are dead and if it does let those that care contact the donor service to state their wishes othereise it will be another cast a fortune exercise.

  • Comment number 4.

    This is a story about nothing. So 21 people who had agreed to be on the donation register in the first place may have had some organs removed that they didn't agree to because somehow the data had got recorded incorrectly. The organs were only removed after consultation with the family, so everybody who could possibly be impacted knew what was being done, so why the big fuss? More than twenty people will have had their lives saved or at least greatly improved by these donations - isn't that far more important bit.

    I've never understood why you should be able to specify that only certain bits could be used - you're dead and have no further use for them, so why would you want to restrict the options of the doctors to save others?. I'd actually favour a system where you had to actively opt out of organ donation rather than opt in.

  • Comment number 5.

    Consent for organ donation should be assumed, unless you sign an opt-out register. But if you do opt out, you will be denied an organ transplant if you ever need one.

  • Comment number 6.

    "Do you have confidence in the organ donor register?"

    Absolutely Not! I don't trust anything to do with this dishonest excuse for a Government.

    Some months ago I had my name removed from the Organ Donor register. Yes, I know that once I'm dead I don't need my organs, but it's not for anyone else to say what I can and can't do with my body. On the flipside of the coin, under NO circumstances whatsoever would I accept a donor organ.

    If a member of my family needs a kidney, they can have one of mine immediately, no questions asked; but I do not want to donate to a perfect stranger. It isn't selfish or callous; it's my body, my choice.

  • Comment number 7.

    It seems to have been a legitimate mistake.

    They have rectified it.

    It's time to move on.

  • Comment number 8.

    "5. At 10:55am on 11 Apr 2010, Red Bren wrote:
    Consent for organ donation should be assumed, unless you sign an opt-out register. But if you do opt out, you will be denied an organ transplant if you ever need one."

    Spot on!

    There should be a clear option for people to opt out (or for parents to opt out on their child's behalf up to the age of 18 - assuming that there are no conditions preventing the 18 year old from opting out), beyond that, for the good of the population as a whole, consent should be assumed. The only concern then would be that someone with a viable organ and a waiting donor would still be treated and not just farmed as an easy option.

  • Comment number 9.

    1. At 10:11am on 11 Apr 2010, arian5 wrote:
    Lets hope this mess will not cost lives.

    The truth is that this will cost lives as it is factually bound to have yet more negative impact on the donor scheme.

    I hate the way that every negative is picked up on and splashed around while the millions upon millions of actions and outcomes from the POSITIVE side of our human endevours are thrown aside like some inconsequential piece of trash.

    There will ALWAYS be mistakes, there will ALWAYS be a few who are purely negligent. Of 60 million humans in UK, I doubt that even a half dozen are absolutely perfect in every way, except in their own minds.

    All we can do as a species is attempt to minimise attrocity, attempt to minimise mistakes and constantly aim for highest possible standards.

    This story is basically about nothing and is bound to result in a few vile stupid biased people jumping around creating a commotion and as much negativity as possible. Those who disagree with organ donation will especially seek to damage it as much as possible. More often or not, they will be people who believe in mystical supernatural all powerful planet forming beings.

  • Comment number 10.

    Surely we should be moving towards the model used in other countries of "opting-out" of organ donation. It may sound harsh, but it is very selfish to refuse organ donation whether for the future or by bereaved relatives. It may well mean someone - or some others die as a result. It is easy enough to set up a register for people who wish to opt-out; it is simply the reverse of what we have at present, of people opting into a register. People need to ask themselves: how would you feel if you actually knew who the person was who died as a result of refusal? (You do not of course.) Could you look their relatives in the eye? (This situation will not arise of course.) How would you feel if a loved one of your own died because they did not get a vital organ? If you or perhaps your child needed an organ to live, would you chose to refuse one if offered, or would you chose to die or let them die instead? You cannot have it both ways.

  • Comment number 11.

    This is scandalous, but sadly not unexpected. The track record of this Government in dealing professionally and accurately with private individual information, is seriously flawed. And they want us to go along with their identification scheme and want us to have faith in the new NHS information sharing project? When WILL they realise they are dealing with people first and foremost and not simply data which can be utilised in such a slapstick way? Big Brother is with us and Brother doesn't have a clue what's going on.

    John in Dudley

  • Comment number 12.

    I've carried a donation card since they were first distributed in chemists years ago. But I didn't know about the on-line register, so before writing this I went on line to make sure that I was registered as well. As most will say, after I'm dead what possible use to me are my organs? If they would save someone's life then I've done some good in this world.

    As to those who say they wouldn't register I ask why? If it's on religious grounds then so be it, but if your only reason is that you don't like the government or that there has been an inevitable blunder in the records section then shame on you. That's not a good enough reason to deny someone life.

  • Comment number 13.

    Most MP's donated their brains years ago and haven't even noticed!

  • Comment number 14.

    I can never understand why we don't have an 'Opt Out' register. If you don't want to donate your organs after death then register. If on the other hand you would like others to benefit you would then know that if you had not 'opted out' your organs would be available. I can't quite understand why you would specify which organs could and could not be used.

  • Comment number 15.

    I`ve been registered and carry a Donor Card for a number of years.
    When I`m dead they can take what they want, it`s no good to me is it?
    Can`t see what the all the fuss is about, when your dead your dead.....................Full Stop.
    And if any part of my body can help another person(s) live, then please take it.
    All this is being built from nothing by the media.

    Stop Moaning.

  • Comment number 16.

    9. At 11:12am on 11 Apr 2010, MrWonderfulReality wrote:

    "Lets hope this mess will not cost lives."

    -------------------------------------------

    The truth is that this will cost lives as it is factually bound to have yet more negative impact on the donor scheme.

    I hate the way that every negative is picked up on and splashed around...

    There will ALWAYS be mistakes, there will ALWAYS be a few who are purely negligent...

    All we can do as a species is attempt...to minimise mistakes

    This story is basically about nothing and is bound to result in a few vile stupid biased people jumping around creating a commotion and as much negativity as possible

    --------------------------------------------

    Agree completely! Spot on. Still, one can hope it wont cost lives!

    An (although by no means the most important) advantage of an opt out system is that knee-jerk reactions following this kind of story have far less of an effect on organ donation. People are much more likely to think 'I wont bother registering as look what happens when you do' than to actively opt out of a system as the latter involves actually doing something.

  • Comment number 17.

    Corpse harvesting (the un-PC name for Organ Donation) isn't the way forward (as this example shows).

    Serious money should be invested in the technology to grow new organs (if we'd started doing this in 1990 when the technology was appearing we'd not have to have Organ Donors today), not only does this utterly remove compatibility issues with organ as they can be grow to match exactly, but it also does away with the randomness of Organ Donation availability (even if everyone in the UK were on it, it would not guarantee no waiting list or that people wouldn't still die waiting) and all the issues that go with it.


    Of course Corpse Harvesting is the much cheaper option, so that is probably why politicians seem determined to pursue it.

  • Comment number 18.

    I am totally in favour of an opt-out system.

  • Comment number 19.


    In view of ambiguity in understanding the question what exactly it is conveying to the readers in absence of detail description; we presume that the Organs of 21 great personalities who expressed their desire to donate some particular Organs of them to others who are suffering from Organ failures in one way or the other through happening of an irreversible process within; in case of facing of sudden death by them unnaturally but were wrongfully implemented on others who either never expressed any such desire to do so or removing different Organ from the ones which is not covered by the desire expressed to make the desire already expressed null and void in actual sense.

    In the age of Computers; we unable to understand how such errors cropped into the system to make the system venerable to suspicion. However, now that the wrong is detected, we all hope that it shall not stop the donors from expressing their desire amasses to help others who are not their immediate members of the family but to distant others to carry a expression of togetherness through the act to consider ourselves as a single family that constituted a particular Nation to broaden our views just a little.

    (Dr.M.M.HAZARIKA, PhD)

  • Comment number 20.

    What's all the fuss about? Why was this made public, the organs have been used to help the living, the dead won't have noticed, and the relatives would've been none the wiser.
    Organs are useless to the dead, so an opt out system is the way forward, at the moment so many organs are lost because people can't be bothered to fill out the form, so if they're that determined to stay intact and rot, they'll find the time.
    In my case I've already said they can have the lot, and I'm even investigating the possibility of the leftovers going to the medical incinerator, I have no need for a grave.

  • Comment number 21.

    If we are to help the less medically fortunate then it it essential and imperative that we have a opt out donor system
    This must include all body parts
    Personally my bits can go to whoever needs them, what's left over goes to Alzhiemer's in the hope that a cure may be found for an illness which will affect us all if we are not taken sooner.

  • Comment number 22.

    No, there shouldn't be an opt-out system. It encourages people to be lazy about checking to see if someone is a non-donor. It would be a worse crime for our deceased loved to be harvested for spare parts against their wishes.

  • Comment number 23.

    You can't take it with you? So lets get this right, by accidently saving many lives these deceased people are in some part still alive. perhaps the relatives could meet those who benifited? but all I can see at the moment is an opportunity for the lawyers to make big money in compensation claims at the expense of the tax payer. Thats you and I. I think it should be automatic unless you opt out. Then if you have objections it's up to you to opt out. It would save all this stupidity and cost.

  • Comment number 24.

    Anyone old enough who used to work in medicine, will understand the progress made in better safety in cars today and seat belt laws?

    Whatever you feel about the NHS - there is evidence that you have a better chance of surviving a serious car accident? The improvement in survival also includes the efforts of firefighters, police, paramedics, air ambulance etc., before you even get to hospital.

    The point is, due to all of the above, the availability of 'healthy' organs for 'harvesting' and transplant has reduced dramatically over the last 30yrs or more?

    So, the conclusion may suggest that we need to talk more openly and positively, as families and as a nation about 'registering' or 'opting-out' of organ donation, rather than the media talking about (although very serious/unforgivable) very negative aspects?

    We can only hope we will never be in a position to need some kind of organ donation - because right now - it's all up to us?

  • Comment number 25.

    In this family, all 3 of us are in favour of organ donation but we have not entered our names on the register. We each know the others' wishes and will, when the need arises, make them known. Until then it is nobody else's business what we want to do with our remains.

  • Comment number 26.

    In response to the contributors who say "does it really matter that the donors wishes weren't respected?" well yes, actually it does matter. As individuals we have the rights over our bodies not the NHS and not the state. For all those that are shouting this is a none story, if the reverse had happened and these 21 peoples organs were not used when it was their wish something tells me you would all be shouting from the roof tops in protest.

  • Comment number 27.

    I have experienced that sometimes old business processes are carried forward to new requirements and the inexperience inherent to new challenges makes us miss that they are not suitable. If we were never wrong we wouldn't be humans but we progress because we keep learning, adapting and perfecting.

  • Comment number 28.

    This just shows that an opt out register is the way to go - and how important it is to discuss your wishes with your loved ones.

    Wales is moving to an opt out system, I think the rest of the UK should do the same.

  • Comment number 29.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 30.

    "The dead will have no choice? We need many more safe guards, on this organ farming in the U.K. unless, its going to be a free for all organ fest, i.e any car accident e.t.c Will it go to the quickest team who shows up first to take the organs? will they be a trade or Auction in them world -wide? How much money will be made on dead people parts with no choice in this matter?

  • Comment number 31.

    There can be no trust as long as there is a battleground involving those who wish to donate and those who do not.

    There should be no such battleground. A donor is able to register their wish and that registration should be checkable in more than one place. The staff who are involved in transplant technology should, prior to any potential organ transplant becoming available, know who the potential donors are having regard to all issues of suitability etc. If the name of the "donor" is not on that "potential" list then there is no "donor".

    The fact that the donor system is poorly monitored and/or policed is disturbing and distressing to us all including the relatives and family of people who die in accidents etc.

  • Comment number 32.

    For all those that are shouting this is a none story, if the reverse had happened and these 21 peoples organs were not used when it was their wish something tells me you would all be shouting from the roof tops in protest.

    ---------------

    The difference being in this instance, potentially 21 people have lived, whereas the reverse would have meant potentially 21 people could have died.

  • Comment number 33.

    As I understand it, the error only impacted on those people who had not opted to donate organs, so it won't really make a difference. Anybody who wanted to donate their organs was unaffected.
    To be honest we really should switch the system round so that the presumption is that after death you are happy to donate your organs, unless you opt out, as most people would be happy to do so, but can not be bothered to register. Those that fundamentally disagree with this principal simply need to opt out.

  • Comment number 34.

    Mrs Vee wrote: "Do you have confidence in the organ donor register?"

    Absolutely Not! I don't trust anything to do with this dishonest excuse for a Government.


    Oh grow up, or educate yourself. The Government does not administer these things, it's the civil service. The very same civil service that will be in force should the Tories get into power.

    Some people love to blame everything on the Government - it shows a distinct lack of responsibility on their own part.

  • Comment number 35.

    I want to donate any organ that is needed after my death but haven't signed the organ register. My next of kin all know my wishes and will give the go ahead to the doctors to "harvest" my organs. I am uneasy about people breathing with a beating heart whilst their organs are removed, so my relatives will use their judgement to decide when I am brain dead rather than leaving it entirely to an unknown doctor. I am also uneasy about proposed state ownership of our dead bodies which would be the case with the much suggested opt-out system.

  • Comment number 36.

    John Sayer wrote: This is scandalous, but sadly not unexpected. The track record of this Government in dealing professionally and accurately with private individual information, is seriously flawed

    Yup, because Gordon Brown himself administers the entire system doesn't he?

    Honestly, the sheer ignorance of some people beggars belief. Surely it's about time that only people of a certain intelligence were able to vote?

  • Comment number 37.

    I think the story just shows that it was sensible to confirm the details are stored correctly and can hopefully save time in finding donors and asking family. If you want to donate your organs, and feel strongly enough to comment here please discuss your wishes with your family -- persuade them to join too.

    I feel very strongly that my organs, just like the output of my work, belongs to me, not to the state, or to the rest of you, unless I choose to share it or exchange it. I think a system of OPT-OUT is open to abuse and accusation of abuse. If you want organ donation and the state to e legitimate you have to persuade people to join, not compel them.

    In an OPT-OUT system people may be afraid to tell their true feelings, afraid that is may change the way they are treated by the NHS and the state.

    Actually the peoples views that I should be compelled to OPT-OUT persuade me that it is right to not donate my organs. If I am every unconscious with a high chance of dieing in hospital how can I be sure that some doctor won't have the view I will do more good dead than alive. (He may have the view it is better to save 25 people (and get paid for it) rather than possibly save 1).

  • Comment number 38.

    For once, the NHS have made a so called "blunder" that has saved more lives and people are actually up in arms about it? if 90% of people believe in organ donation, only 27% of people are registered on the database, and only 21 organs were wrongly donated, that leaves prescious little chance of them actually offending anyone. For once the NHS has made a mistake, held their hands up, and actually saved lives. ARE PEOPLE REALLY OUTRAGED ABOUT THIS? I'm sure those people wouldn't complain if they were the one receiving the organ! I say well done to the NHS, as i'm sure the 21 recipients will be doing! If so few people are registered, maybe we should change the way we regulate organ donation. instead of registering to offer your organs, why not register in order to NOT donate your organs.

  • Comment number 39.

    What the heck does it matter? when you're dead you are not here - nada - nuffing!
    I'd love to know how anyone knows that somebody took what they were not supposed to! Do they dig you up and rummage in your corpse to check if all the proper bits are still there? Are all the body parts electronically tagged and if one is removed a bell rings?
    Personally, I would prefer to see everyone doing some good in this world - even if it's after leaving it. I can't understand how anyone donating their eyes can later 'see' that they are put to good or bad use!

  • Comment number 40.

    Opt out systems ... Absence of objection is consent.

  • Comment number 41.

    whilst all this talk about organ donation is in the public view - has anyone following a bereavement been questionned about this subject? When registering there are no questions about the potential donor's past medical history, nor diseases, not abot their sexual preferences. All these questions were asked less than 12 hours after my husband died when only his eyes could be used.

    He carried an organ donation card but still the questions. Had he been abroad? had he taken muscle enhancing drugs in his youth? had he been with prostitutes? what were his sexual preferences? I found this rather intrusive so soon after my husbands death. Surely all this could have been recorded when he was alive.

    By all means review the system but there should be an opportunity to answer on line all the questions which are asked after some one has died who carries an organ donation card, to save the bereaved person going through the additional trauma of so many questions.

  • Comment number 42.

    I doubt if many people will have much trust in the assurances given by Andy Burnham. Seem to remember that similar promises were made after organs were removed without permission from the bodies of children at Alder Hay Childrens Hospital in Liverpool. Labour were the party in power when that happened, so Burnhams assurances are worthless.

  • Comment number 43.

    i understand this point; opt out systems... absence of objection is not consent. However, if anyone uses the state as a means, then their organs should revert back to the state unless an official objection has been made.

    ever claimed single person council tax? ever received medical treatment on the NHS? ever received a blood transfusion? ever claimed unemployment allowance? ever claimed child benefit? ever claimed disability?

    why not give something back and be proud. those 10% of people who thoroughly object to organ donation, if so religious in their beliefs (forgive the pun) then make them fully aware. if they are so against it they'll take a moment of their time to add their name to the "opt out" register.

  • Comment number 44.

    angry_of_garston wrote:
    Opt out systems ... Absence of objection is not consent.


    Absence of effort shows an absence of importance, if you can't be bothered to opt out of the system then you obviously don't care enough about it for it to be an issue to you.

    I'd go for a different policy first though, make the organ donor system a single system and anyone who wants to be able to receive a donated organ must already be signed up as a donor. Then make people aware that if they don't sign up within a twelve month period then they would no longer qualify to receive donated organs in the event of an accident or disease.
    Obviously those who are unable to donate due to their own underlying medical conditions, children and those who are mentally incapable of making such a decision would be excluded from this and would always be able to receive donated organs but for everyone else once they got to 18 they'd have to make the choice.

  • Comment number 45.

    Some people are alive who would now otherwise be dead. The dead who donated remain dead. What bad has happened? If you think rotting organs being eaten by worms is nice theres something wrong with you.

  • Comment number 46.

    800,000!!!! That's alot of mistakes!!! For those who are donors ...

    well done. It's not something I would ever consider doing.

  • Comment number 47.

    How can the organ donor register restore trust?
    This is a really tough issue because people on both sides feel so strongly about their position. However, it’s my personal belief that people should not choose to opt in. They should choose to opt out.
    No matter which way the “option” goes, people must have faith that their wishes will be implemented. This 21-organ mistake is a major setback.
    Independent review or not, the Government cannot undue the errors where organs were removed without authorization; unfortunately some people feel so strongly about being buried (or cremated) in tact, that this error might well leave then haunted.
    I tend to agree with Health Secretary Andy Burnham that a new, mistake-proof system must be put into place.This includes the assurance that the waiting lists are valid and not affected by external influence (such as wealth or the belief that one segment of society is more worthy than another).
    Likely many people hesitate to become donors because of bioethical issues, like the definition of death, when and how consent should be given, as well as the potential for money to exchange hands.
    I am hopeful that the emerging field of “Regenerative Medicine" may soon allow organs to be grown from the patient's own cells (stem cells, or cells extracted from the failing organs).

  • Comment number 48.

    I refuse to join the dona schema because I have no say in who would get my organs. They could go to a child, a hard working Father of 3 or a serial crack addict rapist. I'd turn in my grave if the later got an organ of mine. I should have the right to say that my organs must not be used to treat criminals or other types of worthless people; seems fair to me.

  • Comment number 49.

    EBAYTKMAX wrot:

    800,000!!!! That's alot of mistakes!!! For those who are donors ...

    well done. It's not something I would ever consider doing.

    ------------------------------------------------------------------------

    do you mean you wouldn't consider making the mistake, or are you just a selfish hypocrit willing to take but not give?

  • Comment number 50.

    This is exactly why I haven't signed up to the donor system. I do not agree to an "opt-out" system. Most people would be unaware of it, what if relatives object after death and the most important issue is that its my body and the state shouldn't be able to presume that they can have it, dont they take enough from us..

  • Comment number 51.

    I have always thought it would be better to 'opt out' from organ donation rather than to 'opt in' - many people would probably be happy to donate organs but never get around to signing up.

  • Comment number 52.

    Yes, it's right and clear, that absence of objection is not permission, and is considered assault under UK and EU Law?

    There is increasing evidence that 'testing of brain stem death' is 'variable' in UK hospitals and across NHS Trusts and, therefore, not conclusive of actual death of those diagnosed in 'comatose state'?

    Until there is an open and peer reviewed and 'gold standard' across all UK hospitals - then there will be no trust of doctors by the most vulnerable - the patient and their family and/or significant others?

    The NHS, the Government and the media have NO right to advise or disrupt or speculate on the whole issue of organ donation until there is an open and transparent debate on this issue?

    Perhaps too many, not in medicine, but in politics are watching too many 'medical dramas' to get a grip on incompetence?

  • Comment number 53.

    What is needed is a simple system where you put your name down as a donor. If you are on the list then you go to the top of the waiting list for a transplant. Every body can make some contribution in the form of an organ. As for the current shambles, sack the civil servants responsible, use people who are capable of doing the job.

  • Comment number 54.

    Re: #20. At 12:14pm on 11 Apr 2010, Dilligaf-Fbi wrote:
    What's all the fuss about? Why was this made public, the organs have been used to help the living, the dead won't have noticed

    ... I'm not so sure they won't have noticed. I was told once that although a donor is "technically" dead, they will keep them alive until said organs are removed. This notion has always scared me into not carrying a donor card as you couldn't say whether or not you would be conscious of the fact, or even feel said organs being removed.
    So if there are any doctors or surgeons out there who could state that this is not the case, then I will glady donate any organs needed at my passing.

  • Comment number 55.

    I don't understand the complaint. Is it a 'bits and pieces' donation?
    " I'm sorry but I need the eyes to see the Good Lord as I pass through the Pearly Gates.", or " If you chop the legs off I won't be able to skip into Heaven with the Good Lord."

  • Comment number 56.

    Once more into the breach - haven't we been through this all before? Lost data, mixed up data, misinformation and mixed information. Where there is room for error it will undoubtedly occur.

    I am all for an opt out scheme - easier to operate and relatives have no difficult decisions to make. Oh for a government that watches over our personal details with as much care as they do their egos. Mistake after mistake leades to inquiries and reviews all at the tax payers expense.

  • Comment number 57.

    I don't believe this. If a person does NOT want to donate how come their names are on the donor register at all?

    This is a prime lesson in not trusting governments' handling of personal data and databases at all. It's also a prime warning about abuse, stolen organs or even organs for sale and the crime that can surround it.

    I am not a donor and do not wish to receive an organ in this wretched Frankenstein set-up. I do not carry a donor card, am not (or shouldn't be) on the donor register; and when it's my time to go, I'll go.

    I do not and will not support an opt-out system for reasons stated above: there'll be too many government-IT-system-inspired mistakes.

    Heads should roll (but not for donation, obviously) somewhere along the line. Who'd want a head transplant from dunderheads such as these?

  • Comment number 58.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 59.

    52. At 2:58pm on 11 Apr 2010, corum-populo-2010 wrote:
    .......
    The NHS, the Government and the media have NO right to advise or disrupt or speculate on the whole issue of organ donation until there is an open and transparent debate on this issue?


    Hah! Parliament has just rammed through its digital piracy bill on three-line-whip votes. The issue was never debated properly and most of those who voted didn't attend any debate.

    So don't be surprised to find "opt-out" has suddenly been passed into legislation without anyone outside parliament knowing. The way "democracy" works here is a farce these days.

  • Comment number 60.

    50. At 2:47pm on 11 Apr 2010, Adam wrote:
    This is exactly why I haven't signed up to the donor system. I do not agree to an "opt-out" system. Most people would be unaware of it, what if relatives object after death and the most important issue is that its my body and the state shouldn't be able to presume that they can have it, dont they take enough from us..


    Absolutely.

    They (government) are NEVER going to be satisfied. On death you might come in for inheritance tax and death tax (all on what you saved and worked for (and paid tax on) while alive. Now they expect to command what happens to your innards too. Disgusting.




  • Comment number 61.

    Today there is more than 10,000 people waiting for a life saving transplant in the U.K. Today 3 people will die waiting for a transplant -those people are your mum's, dad's, grandparents, brother, sister, children, friend......
    If someone is refered as a potential donor - the ODR is always checked - and and a discussion is always held with their NOK, or friends, or nominated representative. AND THE HUMAN TISSUE ACT is always abided by, this makes consent the fundamental principal with regards to donation of organs. During the consent process - the NOK are given the opportunity to say yes / or no to individual organs and tissues.
    This story is more about data protection.......and the DVLA has recently lost thousands of people's personal data, and i suspect the problem actually originates back to the DVLA handling of data.

  • Comment number 62.

    34. At 12:55pm on 11 Apr 2010, luskentyre wrote:

    "Oh grow up, or educate yourself. The Government does not administer these things, it's the civil service. The very same civil service that will be in force should the Tories get into power."
    and
    "Yup, because Gordon Brown himself administers the entire system doesn't he?
    Honestly, the sheer ignorance of some people beggars belief. Surely it's about time that only people of a certain intelligence were able to vote?"

    Your comments deriding other people's views as to the responsibility of government reveals YOUR lack of understanding as to the function of government.

    For your education, the definition of Government is a: "Body of people that sets and administers public policy, and exercises executive, political, and sovereign power through customs, institutions, and laws within a state."

    It is the Government that has "executive power" and is therefore responsible for the actions of the Civil Service. So, while Gordon Brown may not personally be checking things, he is the one that is ultimately responsible for the Civil Service's successes and failures. As Prime Minister (as with any other senior executive) Gordon Brown can delegate authority, but not responsibility.

    39. At 1:14pm on 11 Apr 2010, Jim Currie wrote:

    "What the heck does it matter? when you're dead you are not here - nada - nuffing!
    I'd love to know how anyone knows that somebody took what they were not supposed to ..."

    It matters because nobody, not the State, not you or anyone else has a right to another individual's body whether alive or dead. The fact that you and others are advocating that you somehow have a right to someone else's body parts in the name of a "greater good", quite frankly I find abhorrent. Taking something, anything against an owner's wishes or agreement is nothing less than theft. That nobody would know "that somebody took what they were not supposed to" in no way mitigates the theft.

    Changing a system from someone having to make a conscious decision to donate his or her body parts to an "assumption" that their body belongs to the State or the rest of society would be nothing more than the total dissolution of an individual's freedom.
    Who makes the decision that somebody, although still breathing is "dead" and it's OK to carve them up?
    How long before the definition of "death" is changed in order to be able to harvest fresher parts?
    How long before some authority decides that one person's body parts would "provide a greater good" if they could just be taken and used by someone else?
    How long before some diseases or ailments are no longer treated under the NHS because someone thought that society would "benefit more" from that person dying?

    32. At 12:47pm on 11 Apr 2010, Joe wrote:

    "The difference being in this instance, potentially 21 people have lived, whereas the reverse would have meant potentially 21 people could have died."

    No, in this instance 21 people received eyes that were stolen from corpses.

    29. At 12:44pm on 11 Apr 2010, possilview2 wrote:

    "I cannot see what the fuss is all about.
    Be real after you are dead you are no longer human, just a pile of rotten flesh so why not let someone else benefit by keeping a bit of that rotting corpse alive?
    I understand the way spiritual terrorism works as is used by bent religious ideologies as a control tool and feel sorry for those thus affected. However the dead in my view have no rights and should be asset stripped when dead just the same way as the caring relatives, and the tax man, greedily asset strips the deceased estate."

    I don't recall reading anything about any religious views that were held in the report, so why bring it up? If you mean by "spiritual terrorism" that I value my individual freedoms, then yes, I suppose I am one of those that you scorn as "thus affected".

    The "assets" that you advocate be stripped from a "pile of rotting flesh" belong to a human being, not the State and not you. The dead should be afforded the fullest respect and the wishes that they made in life, should be strictly complied with. What you suggest lowers the level of humanity to new depths of depravity.

    4. At 10:24am on 11 Apr 2010, Soreshins wrote:

    "This is a story about nothing. So 21 people who had agreed to be on the donation register in the first place may have had some organs removed that they didn't agree to because somehow the data had got recorded incorrectly. The organs were only removed after consultation with the family, so everybody who could possibly be impacted knew what was being done, so why the big fuss?"

    The big fuss is, that these donors put their faith in a system that failed them. They were specifically asked what body parts they wanted to donate and their wishes were not complied with. I am sure the relatives were informed that their newly deceased loved one was on the organ donor register, however I think it is safe to assume that they were not informed that the deceased had specifically declined to donate certain parts. If the family had been made aware of the declination I feel sure that they would have complied with their relative's wishes.

    I am a registered organ donor and have been for decades. It was MY conscious decision to willingly donate my body parts for either transplant or medical research after death. Should the law be changed to an "Opt Out" system, you can rest assured that I will exercise that right and remove my consent. You do not have a right to my body, living or dead.

    If there is a need to increase the numbers on the donor register, then perhaps the relevant government department should do more to make the general public aware of the salient "benefits".

  • Comment number 63.

    An opt-out scheme is a good idea because saving lives is a a worthy objective. It should, in my opinion , be illegal to sell off 'spare' organs obtained under such a scheme . I understand that in the past the NHS has sold blood to private hospitals who have then retailed it at a profit to private patients. NHS patients should come first and no private company should be allowed to benefit financially from public altruism.

  • Comment number 64.

    First of all, I would like to say that I am all in favour of organ donation, and I am on the register (I take the view that they aren't going to do me much good when I'm dead!)

    However, I can't agree with people who suggest an opt-out system instead of opt-in. It would only be a matter of time before a blunder like this happened and organs were taken from someone who had opted-out. I am also not comfortable with the state presuming that my body is for the taking when I'm gone - as it is I have made a decision to allow the state to use whatever parts of my body it needs, which to me is a different matter entirely.

    In my opinion, the fairest way to handle organ donation is to give priority for donated organs to those on the register. If I am prepared to give my heart when I die, I should take priority over someone who hasn't bothered to register should I need a new heart.

  • Comment number 65.

    It's all a question of trust! Many people are worried that if they've signed a donor card, that a hospital may not try too hard to bring them around, so that they can use their parts to help more 'valuable' members of the community!

  • Comment number 66.

    I think this story is a success story because NHS seems to be responding to the problem properly.

    People saying we need an opt-in scheme because opt-out doesn't work, do you really think the government has made enough efforts to get people to sign up? If 90% of people are in favour you would think making it easy to donate, and asking them so join the scheme would enough.

  • Comment number 67.

    Whilst a database is within reach of Nu-Lab GovUk no one will convince me it is safe.

    Is this the same Nu-Lab govUK that wants all our data on one database? One which will let us pay tax, NI, council tax, store our medical records, police records and bank details?
    Presumably even our wish to donate organs, and which organs!

    “Nu-Lab GovUK” and “database security” are mutually exclusive expressions. When in the same sentence it is wondering out of the mouth of a politico who is still looking for the “Any” key on the computer!

    The only way to secure this information is to outsource it to the private sector, by open free tender! NHS, GovUK in general excluded. As are Nu-Lab donors, CSA proves as does the CRB what happens there!

    The NHS (repeatedly), HMRC, Customs (before), and good old leaky DVLA have lost so much data that it does not make the headlines and no punishment. Yet when a private sector company does it is major news and big fines!

    If the massive portal comes into existing standing check by jowl with unlimited access will be the MI5-6 operative and their counterpart the dog pooh fining officer from the local authority!

  • Comment number 68.


    @ 1. , arian5 wrote:


    "Surely on OPT OUT system is the way forward. Yes, it will possibly upset the very few who don't want to donate but don't manage opt out but THE VAST VAST MAJORITY WILL BENEFIT."

    Er no actually I think you are not merely upsetting a majority but you insult us with your arrogant disregard for other peoples lives and ideas.

  • Comment number 69.

    I really can't see why people don't want to donate their organs. Not even for religious reasons. What contemporary religion says that you need all your bits? If there were to be such a miracle as raising the dead (lol - of course not, it's just that people don't want to die, not "really") then surely the god involved could fix them a new eye or kidney.

    It's just selfishness with a convenient excuse. Each and every molecule in you came from non-you sources, such as the stars. What makes these egotistical nitwits think their kidneys "belong" to them (but to whom?) after death? What about the bits that end up inside the smoke or the worms, nibble-nibble-nibble? Rather save a life than feed a worm, no? Prats.

  • Comment number 70.

    Would be curious if you carried out a poll of those so annoyed with a person’s wishes to donate certain parts and not others to see how many are already, before being asked, full donors. Or what are their reasons for not donating? Why this applies to them and not others?

  • Comment number 71.

    The day I heard NHS information would be held in India I knew they couldn't care less about privacy or accuracy or corruption.
    Neither Conservatives or Labour or Libs really care one bit about anything other than their careers.
    They all sold us out.

  • Comment number 72.

    We simply have to accept that incompetence, mediocrity & a devil-may -care attitude is the trademark of Britain today: trust me, if the British can get it wrong, they will! It is a sickness in the national psyche.

  • Comment number 73.

    ORGAN DONATION CARDS/REGISTRATION ARE ESSENTIAL!

    Furthermore, there are 'significant events' experienced by medical and nursing staff when working to save a patient's life?

    Doctors/nurses/paramedics/ALL frontline services work to save life - it's automatic BY vocation AND very significant and serious scientific training.

    However, there are times when - there isn't the language to express or to explain - but there are 'moments' when you actually feel the 'spirit' 'passing' out and almost 'through' you from the person you are trying to save as they die?

    NO. we don't imagine this because, it's not new, but an admin staff member from a different department experienced this at the same time as me while 'observing' (standing in the room and paid to watch) all departments over 7 months.

    She contacted me 2 weeks later about her 'experience' after contacting every other member of staff fighting for this patients life as she was so disturbed? Thankfully, her experience of an 'inexplicable' sense of 'energy' 'presence' of that patient passing through her was the same as mine?

    NO, THESE COMMENTS are NOT RELIGIOUS it's simply that there will be no benefit from another sterile quango-run and wastefully expensive 'review, investigation etc., will cost lives today and tomorrow!

    We already have shed loads of evidence of the benefit of organ donation of the departed to a 'another place'?

    The trust has to be proven by a 'gold standard' by all UK hospitals that those on life support; in a comatose state; or the 'standards of regulation of evidence of brain-stem 'death'.

    Until ALL THE SYCOPHANTICT MANGERS OF THE NHS, HEALTH TRUSTS ETC., ETC., AND ALL QUANGOS NOT MENTIONED are stopped from building their little EMPIRES and GOLD-PLATED PENSION FUNDS - THEN - perhaps we can find the funds for real health-care that all NHS workers want to get on with?

  • Comment number 74.

    Its time for us to stop being squeemish about loosing our organs after death. If it saves another life after your death, there shouldn't be a problem surely? As far as I am concerned my body organs can be used by anyone for life-saving. Anyone who thinks different should think again.

  • Comment number 75.

    22. At 12:18pm on 11 Apr 2010, Andrew wrote:

    No, there shouldn't be an opt-out system. It encourages people to be lazy about checking to see if someone is a non-donor. It would be a worse crime for our deceased loved to be harvested for spare parts against their wishes.

    ------------------------------------------------------------------------



    That eventuality is almost a certainty with an opt-out system, we've already seen it after a fashion in the repeated baby body-parts scandals.


    But the silly thing is with a big more biotechnology investment we'd be able to viably commercially grow replacement organs today; no need for corpse harvesting, and a much better out come all around.

  • Comment number 76.

    Presumed consent has been rejected time after time and rightly so.

    I don't want ANY authority assuming ANYTHING about me, if individuals can't be bothered registering then they obviously don't care.

    If presumed consent was ever considered I would back any campaign to urge the populous to register their refusal to allow donor removal as a form of protest.

  • Comment number 77.

    Dr Bob Number 59, and 60
    Are you the same type of Doctor who does not comply with the mental capacity act.....by not finding out what a persons wishes are when decisions are made about an indivisuald end of life care........
    A persons best interests in end of life discussions are not just about their physical health and comfort. A persons best interests also include their previously expressed wishes.....such as whether they wanted to be a donor. There are hundreds of healthcare professionals who neglect to check the ODR in end of life discussions - due to their own personal beliefs! Is this fair on the + 17 million who have explicitly said they want to be a donor, and their wishes are ignored!!!
    I want to be a donor to help others, and I have expressed this clearly by registering on the ODR, telling my friends, family, and anyone who will listen.

  • Comment number 78.

    "I really can't see why people don't want to donate their organs. Not even for religious reasons. "

    I might be wrong, but perhaps Jehova's Witnesses might disagree with you.

  • Comment number 79.

    Re: #74. At 4:25pm on 11 Apr 2010, pebbens wrote:

    ...Its time for us to stop being squeemish about loosing our organs after death. If it saves another life after your death, there shouldn't be a problem surely? As far as I am concerned my body organs can be used by anyone for life-saving. Anyone who thinks different should think again.

    ...I stated earlier that the uncertainty surrounding consciousness or feeling of the donor has kept me dubious as to whether to make the choice to donate. Unitl I get reassurance that donors are unaware of the procedure I will not think again. After all, who wants to be plundered by a legalised Jack the Ripper?

  • Comment number 80.

    I cannot quite understand why somebody would become a donor but then restrict what bits you want to donate ?
    The danger is the media will as usual blow this up into a mega story and confuse and worry the public (the norm).
    The error has been discovered, the apologies made, there's no cover up there's no more to the story !!

  • Comment number 81.

    Organ donation should be by choice and should not be assumed.

    Our bodies are very personal and private and no one should be allowed to violate this privacy under ANY circumstances.

    Under an Opt-out how long will it be before spare parts are routinely sold into private healthcare or to places abroad? Should it matter - yes, when maybe priorities for treatment are driven by generating revenue.

    Also, will life-suupport switch off decisions be influenced because a guy in the next ward needs some spare parts?

    Scaremongering - perhaps - but when parts are routinely taken and we end up with a 'kidney mountain' and with parts nearing their 'best before date' I can see this happening.

    Before opt-out I would want some cast-iron governance around organ donation... oh, and we should also tell it like it is and drop the word "donation" . I donate to charity but what the government takes is not what I would call a donation... (its usually called a 'tax' or 'duty' - not sure what would apply in the case of body parts). so "opt out" and "organ donation" are two completely different ideas.

    As for denying opt-outs access to parts, that is just crass. However, accepting a body part should require you to consent to being a donor. That would be entirely fair.

  • Comment number 82.

    The BBC and Wider media outlets also need to be careful at reporting correctly
    1) The baby organs scandal at Alderhay etc was nothing to do with Organ Donation for transplant - it was to do with Post Mortems, and pathology.
    2) The BBC Headline today 'Organs may have been removed from deceased people without their consent after a data-handling error by the NHS' - is also incorrect.
    The very kind and generous famillies who did donate to help others, would have signed a consent form in which each individual organ is discussed, and they will have had the opportunity to say yes or no to each individual organ. As per Human Tissue Act!!
    The media is already making chinese whispers out of the story - MEDIA YOU HAVE AN OBLIGATION TO BE FACTUALLY CORRECT BEFORE PUBLISHING!!!

  • Comment number 83.

    Re my post #78 - I stand corrected (I'm pleased to say). Some interesting stuff on religion and organ transplant here:

    http://www.organtransplants.org/understanding/religion/

  • Comment number 84.

    I always find it hilarious the way the usual crowd politicise every possible topic. I know some of you left school when you were fourteen but really you should be aware that the government does not micro manage everything in British life in the way your paranoid brains think it does. No government minister spends time moon lighting in NHS data entry and it is possible some mistakes are not actually caused by those in power. I some times feel on this site I have wandered into a forum for the petulant children of Daily Mail readers.

  • Comment number 85.

    I'm not that bothered about this "blunder". When you're dead, you're dead. You're not going to notice a single thing. They might have taken the "wrong" organs, but those organs probably made someone's life a heck of a lot better. And THAT person would have noticed.

    Once you're dead, your body is no longer "private" or anything else (you're DEAD, for goodness sake). It's just a bag of organs.

  • Comment number 86.

    I favour the opt out choice. Mistakes are made, that can happens anywhere and that is unfortunate. That would not happen if we signed up our whole body without restrictions. Organ donation has fantastic results and gives life, sight, hearing to others. Sometimes it doesn't work and the person still dies but for many it is a blessing.I am on the Donor register and have told my family that under no circumstances are they allowed to go against it. What is the point? Surely, no-one believes in the resurrection of the dead body any longer? That would be a shame for all those cremated!

  • Comment number 87.

    andyparsonsga wrote:
    Your comments deriding other people's views as to the responsibility of government reveals YOUR lack of understanding as to the function of government.

    For your education, the definition of Government is a: "Body of people that sets and administers public policy, and exercises executive, political, and sovereign power through customs, institutions, and laws within a state."


    You just don't get it do you? The function is carried about by the civil service, therefore it's the civil service who made the mistake. In virtually all cases of data loss, policy was not adhered to.

    Of course they are accountable to, and administered by, the incumbent Government, but you're merely talking about blame here (which is typical I suppose).

    To take your flawed logic one step further, the Executive Authority over the Government is held by HM The Queen - why don't you blame her while you're at it?

  • Comment number 88.

    When I die there is going to be something called a Will, which tells everyone what I want to happen to my stuff after I'm gone. You don't get to wander in and say " I could really use that television of yours, and you didn't tell me that I couldn't take it."
    Well, guess what? It's the same with my organs. They are mine, I did all the hard work growing them and keeping them in good condition all these years, so don't go shoving your sense of entitlement in my face thank you very much. They will go where I choose to give them, not at the whim of you or the state.

  • Comment number 89.

    I do encourage people to consider very thoughtfully and to act on their personal wishes and beliefs in regard to organ donation. I also expect the government to get it right, so there is trust in the system we depend on to carry out our wishes after our death. I encourage all to take five minutes to view this link www.aGiftofSight.org and then re-consider eye donation.

  • Comment number 90.

    Let them take any organ. It will be burnt or eaten by worms anyway.

  • Comment number 91.

    An opt out system would be more effective as people who do not wish to donate their organs would make the effort to take their name, or the organs they do not wish to give, off the donor register. But i believe that if people do not wish to give their organs to help save someones live then they should not be eligable to recieve the organs that they are not willing to give. If they are not willing to give their organs then why should someone give them thiers? They are not willing to save someones life, so why should someone save theirs?

  • Comment number 92.

    I am for donor cards in principle, however, I have not registered simply because I am worried that this will mean, in a life or death situation, that health professionals, subconsciously, will not try their very best to save my life, if they know my organs can be used for transplant. I would rather my family reveal my wishes to doctors only when they are certain there is no chance of recovery.

  • Comment number 93.

    "I believe that if people do not wish to give their organs to help save someones live then they should not be eligable to recieve the organs that they are not willing to give. If they are not willing to give their organs then why should someone give them thiers? They are not willing to save someones life, so why should someone save theirs? are only as good as the people inputting information."

    "I am worried that this will mean, in a life or death situation, that health professionals, subconsciously, will not try their very best to save my life, if they know my organs can be used for transplant. I would rather my family reveal my wishes to doctors only when they are certain there is no chance of recovery."

    Two good arguments for both sides. Personally I worry about whether my life would be deemed less important by a doctor under emotional pressure from people in need of organs and their families. Much as I sympathise, I find it disturbing that there are people effectively praying for another human to die, just so they can plunder their organs and live.

  • Comment number 94.

    Sorry Mr/Ms HYS, please will you correct the mistake you have made and apologise to all those who work for NHS. The blunder was made by DVLA way back in 1997 and not NHS. The DVLA provided wrong information to the NHS and NHS acted on what information was provided to it. How can you hold NHS responsible for this? Absolutely outrageous. It looks like media (including BBC) have made it a habit to blame NHS for anything and everything. You must be sent to the world outside Britain and made to spend a day with the healthcare system in other countries. Then you will realise its value.

  • Comment number 95.

    If anymore reason was needed to stop governbent I.T projects then i don't know what would be..

  • Comment number 96.

    Another highly regrettable situation involving poor administration of personal information. I only wonder: has this happened all the time in the past, but we did not hear of it. Or: have people just got worse at their jobs. Having said that: it is worth a comprehensive review of organ donation as said elsewhere. My only hope is that unlike recent political show trials, it is conducted in a sensible, dignified way, in consultation with a wide range of interested and affected parties, and then the results implemented in manner that demonstrates recognition of the actual issues identified. Am a bit frustrated with knee jerk reactions, intended just to make the matter disappear off the front page soonest.

  • Comment number 97.

    We have perfected an excellent system of Micro-Chipping birds animals etc for recording information. I believe that information confirming an organ donors wishes could be quite easily recorded on a micro chip to be implanted say in the prospective donors upper right arm! making a simple scan at the point of death to confirm their wishes and would not require confirmation from the deceased close family. I would not hesitate to use this method if it was offered as I feel we would only undergo this small discomfort if we were committed to organ donation. If we invent technology we should explore all its uses.

  • Comment number 98.

    Not having any hang ups about Gods, Spirits and Demons I don't care what you do with my carcase once I am dead. For preference it will be dismantled, and the components reused for the good of someone else. Whatever is left can be used as cats meat for all I care. or will know.
    AS for the morons who blame 'Government' for everything that goes wrong, do they seriously think that Gordon Brown sits up late at night typing data onto computers?

  • Comment number 99.

    Recycle everything you can it is the nearest you can get to immortality.

  • Comment number 100.

    74. At 4:25pm on 11 Apr 2010, pebbens wrote:
    Its time for us to stop being squeemish about loosing our organs after death. If it saves another life after your death, there shouldn't be a problem surely? As far as I am concerned my body organs can be used by anyone for life-saving. Anyone who thinks different should think again.

    It's a far bigger debate than you may think. There are those who think that any medical intervention in the process of dying is interference; there are those who'll pay huge sums in the hope of defying the Grim Reaper, people tied to this material world and frightened of moving on, rarely at peace in themselves and with those around them.

    The medical profession superficially appears to have done great things but all it's really done is push the boundary of dis-eases to a new level. In the 1970s about 4% of males died of prostate cancer - because they'd probably die of something else sooner. It can now stamp on cancers and remedy heart disease, strokes etc. But that seems just to expose people to the dreaded dementia and alzeimers later on.

    But the medical profession will never cure us of death. Nature will end up culling humanity somehow or another. Look at the response time dealing with Swine flu. Anything, say, 4 times as virulent and we wouldn't stand much of a chance - in the UK, at least.

 

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