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Rachel Leake needs a life-saving kidney transplant. Her late daughter was a willing donor but her kidneys have been given to strangers, against her dying wish.
Laura Ashworth, Ms Leake’s daughter, was unconscious for days whenr she suffered extensive brain damage after a suspected asthma attack. She died at Bradford Royal Infirmary at the age of 21, with her mother at her bedside.
Ms Ashworth, the mother of a two-year-old girl, was on the NHS Organ Donor Register and had told her mother that she would help her if the time came – but this was never formally recorded.
The Human Tissue Authority now says that it will consider changing the rules surrounding organ donation to allow people to bequeath directly body parts to family members or friends in “exceptional circumstances”.
People can donate an organ to loved ones in need when they are alive but are unable to nominate someone to receive a donation in the event of their death.
Instead, body parts from registered donors go to help recipients for whom they provide the best match and whose clinical need is greatest.
One of Ms Ashworth’s kidneys was given to a man in Sheffield and the second to a man in London. Her liver was donated to a 15-year-old girl. Mrs Leake, who is now the main carer for her granddaughter, remains on the waiting list for a kidney.
She is in the process of arranging a living donation via her 50-year-old sister, but said that her daughter’s wishes would have been to donate an organ to help her.
“I am angry, really angry,” she said yesterday. “I am not finding comfort in the fact that she helped three people. All I wanted to do was carry out her wishes.
“The thing that hurts the most is how Laura would feel. She would be devastated that she was not able to help me.”
The decision in the case was made by the Human Tissue Authority, which has faced calls to change its position. Adrian McNeil, its chief executive, told The Times that he did not wish to comment on individual cases.
However, he said that if a relative had already applied to become a living donor, there might be “a clear and obvious case” for a direct donation after their death.
“The ethical issue is important as there is a waiting list for people wanting donors. For some people it can be a matter of life and death.”
The authority “recognises that there may be exceptional situations when this rule might be reconsidered,” he said. The authority was consulting medical experts and interest groups and is expected to make a final decision this summer. A review of the policy was taking place but while it was in progress similar requests would be turned down as a matter of course.
UK Transplant, which administers the Organ Donation Register, offered its condolences to Ms Ashworth’s family but a spokesman added that regulations ensured that it was not possible for anyone to “jump the queue” in order to receive an organ donation.
Gift of life
— Nearly 7,000 people, including 119 children, are waiting for a kidney transplant – the most common operation
— There were only 1,248 such transplants in Britain throughout 2007-08
— It is hoped that at least 50 extra patients a year will benefit from a new database that seeks to match reciprocal couples as donors and recipients
— There have been three such “paired” kidney donations in Britain. The latest happened this week at hospitals in Manchester and Cambridge
— Anyone can become a living donor for a friend or relative, subject to checks to ensure that they have a compatible blood type and tissue match, and are fit to undergo surgery
— Donor and recipient are interviewed separately and together to ensure that there is no payment or coercion involved in the donation
— The process can take up to 6 months
— There have been five “altruistic” kidney donations, where living donors donate an organ voluntarily to complete strangers
— US surgeons carried out the first six-way kidney transplant operation, involving 12 people, this week. It was made possible by an altruistic donor
Source: UK Transplant, Times database
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Since when has there been a queue to receive a transplant? Recipients are prioritized on the basis of compatibility and medical need. You might as well state that nobody can jump the queue to win the lottery. The 'spokesman' for UK Transplant is obviously unaware of the process he is involved in administering.
John West, Ormskirk, UK
There is a strong regulatory system in the UK to oversee living and deceased donation. All of us who have waited on the list for a transplant are in desperate need of an organ. The HTA has the difficult task of allocating those that become available and it has established criteria to share them out "as fairly as possible" which it reviews at regular intervals. Too many will die without getting the call which they need now. In the last year there were only 808 dead donors. The only way out is to increase the supply of organs. Live donation is one way: there were 829 live donors last year. I waited 3 years on the list. My half brother gave me a kidney and saved my life. Changing the legislation to opting out is another way. We all have a choice to help others in the event of our death.
HelenR, London,
follow the rule and to hell with the consquences
rules are for............
iain, mk,
It looks as though the daughter made no formal instruction to donate to the mother, which means that we only have the mother's word. Is that enough? In the short time that it takes to investigate any legitimacy to the mothers claim, would the organs still be viable? If there is a patient in an immediate life or death situation should the hospital deny life to that person against somebody who is able to wait? How will the hospital make that decision?
There clearly needs to be some deep thought and discussion to be given to this. It might be that the potential donor could state that it may only be used for a specified member of the family. But we would have to ensure that this wish was not made under duress, or promise of financial gain etc.
If we had to opt out of organ donation rather than opt in, then there may be no waiting list and this discussion would become academic and the lady would have had her transplant by now?
I hope she gets her transplant soon.
Jean, Rickmansworth,
The ethics of this are quite clear.
Absent a living will or any other clear indication from the donor, there is no reason to give family members priority. The process of formal recording of a persons wishes is a critically important step, and needs to be upheld. There can be no exceptions, no "justifications" for breaches of the principle without a judge's ruling. There is simply far too much potential for abuse in a system working in any other way, and the simplistic assumption that "family is best" simply does not hold true for many people - a non-critical transplan to a family member now may mean someone else dies on a waiting list!
Rushy, the principle of the living deciding where dead peoples organs goes is one which allready does a massive amount of harm. Many potential organ donors, who have recorded their explicit consent to that donation, do not have this happen on their death because their family object - and this is taken to override the now-dead persons consent
Leon Wolfeson, Oxford, UK
Absolute typical NHS madness yet again and do they not realise that by not giving the Mother her daughter`s kidney/s that it will prevent folks donating in case this situation occurs again.
The daughter would obviously want her Mother to have her kidney and feel so sorry for the Mother.
izzy, wirral, , england
What about Miss Ashworth 2 year old daughter? She should have been taken into consideration when the decision was made. Not only has she lost her mother, but she may also face losing her grandmother.
This issue needs to be addressed and quickly as people will lose faith in the donar card system, which saves so many lives each year.
Not only has Rachel Leake lost her daughter, but she has been denied the one positive that could have arisen from such a tragic event.
L Duffin, London, England
A mother who is still dying and two people walking around each with a stolen kidney. Can't anyone make a sensible decision in the UK? How about a minister for common sense: your Jeremy Paxman seems to possess it in abundance.
David Masu, Zürich,
What a shame ... my mum is donating a kidney to her twin sister in australia ... i feel sorry for this family.
Emily, Manchester,
both my wife and i have destroyed our donor cards
philip smith, seaford,
This is a glowing example of how the NHS works. Would you trust them? That's why I won't donate, you wouldn't know what they'd be up to.
judy, Liverpool, England
Of course one feels true sympathy for the family. But to all those now threatining to remove themselves from the Organ Donor Register or cut up their donorcard, I hope instead you will be inspired by the family - who still allowed the donation of Laura's organs to go ahead, saving three people's lives.
For the 7,800 other people still waiting for a transplant, we are all their best hope - why punish them?
John, Chippenham, Wiltshire
I have just destroyed my donor card.
Mark Austin
Mark Austin, Manchester,
Outrageous. The request was no different to a "Directed donation" with the exception the daughter had no idea she would pass away in such unexpected circumstances and did not therefore have time to formalise the request. Andrew Neil dithered and refused to make the decision demanded of his position, which should have been to follow the daughters request. Instead he followed "policy" that had not envsaged or accommodated this particular circumstance - that "policy" was to ignore the request until a decision based on others views could be sought. Basically he passed the buck.
M Jeffs, Bucks, UK
Another example of public sector madness under Labour. NICE and all these other quangos need a kick up the *&!£ they represent their own economic interest and not the public's.
steve tea, manchester, cheshire
Adrian McNeil has made an idiotic decision. He should not have a position of authority and influence if he is unable to move away from rules and procedures when the circumstances obviously require it! The daughters' intentions were clear from the start - it's not as if she asked the organs to be kept in the event that her mother "may" need them is it?!
Mr McNeil - wake up! This is such a simple exception that could easily be catered for, people hiding behind a piece of paper are not what we need in positions such as yours. Your decision was wrong - put your hands up and redeem yourself - and apologise!
Sonya Hill, Greater London,
Adrian McNiel must resign.
He is completely lost the plot and the bureuacrats like him give the rest a bad name.
Dr Janov, London, UK
I think this could be a PR disaster for the Human Tissue Authority. This could actually deter people for becoming donors. They do seem to have lost all common sense in this particular case.
I think they need to take a long hard look at their procedures and decision making processes.
I feel sorry for the family.
Nick, Swindon, Wiltshire
Adrian McNiel should be ashamed that he does not have the courage to comment about a specific and highly personal case - he is the boss and the buck stops at his chair so he should not be trying to avoid the issue.
I am an organ donor, carry my card and am happy with the decision that I have agreed with my family to do this - as I am sure hundreds of thousands of people are or could be.
However, the whole voluntary process is in danger of collapsing if something as simple as a priority gifting process is not instigated.
Imagine if the first check was to see if any of your family were waiting for a donor organ before opening up the rest of the donor lists.
This need not be complicated and could be instigated pretty much immediately.
However, if those in charge - Adrian McNiel this is you - do not have the courage to act directly and simply in an executive mode this whole process could end up as something we would like to have but cannot find the basic ability to do.
John, London,
Another symptom of the UK' sick bureaucracy!
Bill, Suzhou, China
I feel terrible for both the mother and the daughter. The arguments which prevented the daughter donating to the mother are utterly flawed, and completely disrespectful to the dead girl. Don't the authorities realise that organ donation is a VOLUNTARY practice? How can they decide where the organ goes against someone's wishes like this when it was the daughter's decision to donate in the first place. How can a living person decide where their organs go but not a dead person? Do their wishes not count anymore? No one would have said anything if she hadn't donated at all, but because she did she has absolutely no say, which is ridiculous!
It is utterly shameful that they had no problems distributing the organs immediately but could not consider the basic desires of the daughter. Written evidence should not be required in something so intuitive as this. How many children would rather help strangers than their own parents?
This is a grave injustice.
Rushy, Cambridge,