To really not understand why people do not join the organ donation register?

(277 Posts)
3littlefrogs Thu 11-Apr-13 22:18:39

I have been registered since I passed my driving test nearly 40 years ago. If I am dead I won't need my organs. They could save someone else's child, wife, husband, sister, brother.

RevoltingPeasant Thu 11-Apr-13 22:27:17

Me neither, although I have also thought of donating my haggard old corpus to a medical school for students to dissect.

Although, something gave me pause today: there was a woman on Radio 4 talking about why she didn't donate her baby's organs when he died. The baby was on life support and she said something like, 'When they take him down to theatre for that, you know then it's definitely over.'

This is a bit horrible, but....if something is on life support.... does harvesting their organs basically kill them? I would never have thought this but didn't really know how else to interpret what she said.

3littlefrogs Thu 11-Apr-13 22:31:51

There are very strict rules and stringent tests that have to be carried out before organs are harvested.

I worked on a renal dialysis unit as a student. It made a huge impression on me and I have never forgotten it. It was about the time I was learning to drive, and when I got my licence there was a form to complete. I didn't hesitate,. I have recently updated my registration.

I have just seen an item on the news about a young woman who died recently while waiting for a lung transplant. So sad. sad

HollyBerryBush Thu 11-Apr-13 22:32:26

In this country you are clinically dead before they take the organs.

Harvesting is when you take them from a live person - as they do in China.

The time frame is very small though from death to taking the organs. Also you have to factor in medication, health issues, disease and so forth.

I'd be interested to know how many donors are actually accepted.

Sirzy Thu 11-Apr-13 22:35:21

When I am dead they can have any part of me that can help someone else!

CarpeVinum Thu 11-Apr-13 22:37:55

I think perhaps it the having to consider dying rather than the resultant harvesting for a lot ofmpeople.

Which is why I think an opt out system is better.

Anybody really not keen can say "hands off" and everybody else can avoid thinking about dying while still making their organs availble should the worst happen.

The above therory may be coloured by the fact that where I live talking about dying is practically an invitation for death to knock on your door. I had a fun afternoon going over our life insurance policies and wills with a DH who was so focused on making the sign of the horns and grabbing his balls (to ward off bad luck) at regular intervals that it is a miricle we got through it without him pulling a muscle.

Chinateacup Thu 11-Apr-13 22:38:38

I am registered as a donor. Although I have never until now thought about the harvesting. I guess that if you are on life support until harvested then that must make it much harder for those present who are left behind to accept the finality. Gosh. <Off to cogitate>

Chinateacup Thu 11-Apr-13 22:39:42

Clearly uninformed on this ...

HollyBerryBush Thu 11-Apr-13 22:40:18

I'll rephrase that. I wonder how many willing donors are actually suitable in the event of death. Very few I would have thought.

Off to google some statistics:


Transplants save lives

In the UK between 1 April 2011 and 31 March 2012:
•3,960 organ transplants were carried out, thanks to the generosity of 2,143 donors.
•1,107 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney or liver/pancreas transplant.
•2,846 patients' lives were dramatically improved by a kidney or pancreas transplant, 173 of whom received a combined kidney/pancreas transplant.
•A further 3,521 people had their sight restored through a cornea transplant.
•A record number of 674 kidney transplants from donors after circulatory death took place and accounted for one in four of all kidney transplants.
•1,009 living donor kidney transplants were carried out accounting for more than a third of all kidney transplants. 'Non-directed' living donor transplants (also known as altruistic donor transplants) and paired and pooled donations contributed more than 80 kidney transplants between them.
•Almost 942,000 more people pledged to help others after their death by registering their wishes on the NHS Organ Donor Register, bringing the total to 18,693,549 (March 2012).

All statistics we produce and publish undergo a rigorous validation process to ensure, as far as possible, that information is factually accurate.

RevoltingPeasant Thu 11-Apr-13 22:42:50

So... sorry, a bit fick - if you are on life support they basically turn it off and take you immediately down to theatre? So you are dead?

Or they leave it on but as you are clinically dead anyhow it doesn't matter?

frogs yes I have problematic kidneys and it does make you think....

How do you go about joining? I've always meant to for years but somehow never got round to it.

I've always said they can have anything they want from me.

Kayano Thu 11-Apr-13 22:46:02

My mum is very religious and I think is of the opinion that she won't get into heaven without a liver or some such. Neither her are dad are registered and she is very stubborn about it.

'No redemption you you! You are missing a kidney!'

I am registered, as is dh.

I have a letter written in case I die about my wishes because I seriously worried about my mum and husband feuding over it and he challenging him.

I don't think she would now, we had a chat, however when I had DD I still found myself telling the mw I was a donor and dh was the decision maker should I die

It's very sad.
I'm very pro organ donation.

BikeRunSki Thu 11-Apr-13 22:46:53

I joined as soon as I was 16. I am also on the Parkinson's Disease Brain Bank register. My family are all well aware of my wishes.

I can't understand why anyone / their family would not want to donate organs.

HollyBerryBush Thu 11-Apr-13 22:50:31

Back to top

When organs are transplanted

•10. Do people on the NHS Organ Donor Register definitely become organ donors?

No. Only a very small number of people die in circumstances where they are able to donate their organs. That is why we need as many people as possible to join the register.

•11. How do they know you are really dead?

Organs are only removed for transplantation after a person has died. Death is confirmed by doctors at consultant level who are entirely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not.

Most organ donors are patients who die as a result of a brain haemorrhage, severe head injury, or stroke and who are on a ventilator in a hospital intensive care unit. In these circumstances, death is diagnosed by brain stem tests. There are very clear and strict standards and procedures for doing these tests and they are always performed by two experienced doctors.

The ventilator provides oxygen which keeps the heart beating and blood circulating after death. These donors are called heartbeating donors. Organs such as hearts, which deteriorate very quickly without an oxygen supply, are usually only donated by a heartbeating donor.

Patients who die in hospital but are not on a ventilator can, in some circumstances, donate their kidneys, and in certain circumstances, other organs. They are called non-heartbeating donors.

Both heartbeating and non-heartbeating donors can donate their corneas and other tissue.

StuntGirl Thu 11-Apr-13 22:52:07

My family are all medical (except me! Black sheep of the family) and all have cautioned me against actually registering, but advised I just make my wishes known to my next of kin. So that's why I haven't.

3littlefrogs Thu 11-Apr-13 22:53:44

StuntGirl - why have they all cautioned you against registering?

blueemerald Thu 11-Apr-13 22:53:47

My mother refuses to register as there is not an "NHS recipients only" option. She believes/fears there is too much temptation to bump private patients up the list with the current system. I've tried showing her statistics and so on but she is a very cynical and suspicious lady (her father and first husband were both doctors). My brothers and I have all registered.

HollyBerryBush Thu 11-Apr-13 22:55:12

Incidentally, just because you register, your family has to give consent anyway, so there is no point assuming that your family will carry out your wishes/that you are suitable anyway.

3littlefrogs Thu 11-Apr-13 22:56:15

It was my impression that tissue matching and clinical need are the criteria for receiving a transplant. Not whether you are NHS or private. I work in the NHS and I have never heard of a private patient bias in this area.

HollyBerryBush Thu 11-Apr-13 22:56:20

Yes, the NHS does trade on organs and tissue, not just within the UK either.

•49. Could my donated organs and tissue go to a private patient?

Possibly. Patients entitled to treatment on the NHS are always given priority for donated organs. These include UK citizens, members of Her Majesty's forces serving abroad and patients covered by a reciprocal health agreement with the UK.

Other patients would only be offered an organ if there were no suitable patients entitled to treatment under the NHS. Every effort is made to ensure that a donated organ does not go to waste if there is someone who can benefit.

Donated tissue is made available to any hospital in the UK where there is a patient in need.

•50. Could any of my organs or tissue be given to someone in another country?

Yes, possibly. There is an agreement that any organs that cannot be matched to UK patients are offered to patients in other European countries. Likewise, UK patients benefit from organs offered by other European countries. This co-operation increases the chance of a suitable recipient being found, ensuring that precious organs do not go to waste.
Tissue might also be offered to patients in other countries.

Wobblypig Thu 11-Apr-13 22:56:37

The important thing, more important than being on the register, is to ensure your next of kin will follow your wishes after you are gone. They need to know what you want to give. Some people feel very strongly for example, about cornea or hearts.

Many people are very suspicious about donation and the state of brain death , the decision is made at a time do extreme distress in many cases. Most kidneys come from road traffic accidents or acute brain injuries so by the nature of these incidents death is unexpected.

I strongly favour a 'soft' opt out system like Spain or Belgium.

RevoltingPeasant Thu 11-Apr-13 22:58:05

blue really? Hmm I don't wish to sound narky but I think that's a real shame. If my DH (say) were dying because he needed a liver or similar, and the NHS weren't helping him, God knows I'd remortgage the house to send him private if it might save his life.

People are people; who cares what system they use?

RevoltingPeasant Thu 11-Apr-13 22:59:47

Also, who cares if the patient is abroad or here?

I don't get that.

If you are donating because you want to help other people, why does it matter? If your baby needed a heart, would you refuse one from a Latin American or Polish child? confused

3littlefrogs Thu 11-Apr-13 23:00:16

It is my understanding (and belief) that if someone is on the register, that must go some way to mitigate the distress/decision making at the time of the donor's death? Surely knowing that someone wanted/intended to donate would make it less distressing for the relatives to be approached/give consent?

3littlefrogs Thu 11-Apr-13 23:02:03

StuntGirl - please come back and explain why all your medically qualified relatives have cautioned you against registering. I find that really worrying, as I am sure others will too.

HollyBerryBush Thu 11-Apr-13 23:04:35

my posts are all C&P from

None of it is my opinion.

I know my body is shot to pieces - more then welcome to my cadaver for medical research, but I doubt it would be of any use to anyone living.

Can you be on it if you have had a blood transfusion?

As I'm no longer allowed to donate blood or breastmilk I'm rapidly running out of things I can give.

If someone who really needs it gets one, that bumps the next person on the list.

So even if your liver goes to a (dying) alcoholic paedophile, that still gets everyone else on the list closer to their own lifesaving operation.

Now I don't care who gets what and how socially deserving they are: medical experts have said they need it, and it is a gift to everyone on the list, and all their families.

Further, as a smallish woman I am most likely to donate to a teenager. I can't think how a teenager waiting for a transplant could possibly be undeserving.

I read today that donations in the UK have risen by nearly 50% in the last five years (bbc). I think that's fabulous.

I don't believe any HCP would let someone die just to get organs - you save the person on the table in front of you if at all possible, full stop.

If they're asking DH, DM or DF about transplantation, I'm already dead and gone, but have the chance to give the best gift ever. They know not to hesitate. I come from a staunchly pro-donation family with the equivalent of bathtubs of blood freely given.

foryonisonly Thu 11-Apr-13 23:17:12

If I could pass one law, it would be that everyone's organs are used unless they have opted out. Takes all the emotion and desperation out of a terrible time for next of kin & ensures a better supply of organs. it would never have to talked about at the time. Simple, to me anyway.

TheProw Thu 11-Apr-13 23:19:39

I'm not sure that they do know you don't feel anything during the ops. You're brain 'dead', by some definition, but they don't know if you can feel pain. I read a Nature letter saying there needed to be more research in this area.

CouthySaysEatChoccyEggs Thu 11-Apr-13 23:26:26

Because they won't have me any more sad.

I take meds that would be incompatible with donation, apparently.

Andro Thu 11-Apr-13 23:33:56

I believe in organ donation, but I'm not on he register (NOK know my wishes), DH is the same. DS is very strongly against for reason I understand, even though I don't agree with them (and in a worst case scenario I would respect his views).

What do you think of people who would be happy to receive but not give an organ? Do you think it should be 'opt in/out' for both - ie you can't have one if you're not prepared to give one? Do you think a person's family should legally be allowed to veto a decision the deceased has previously made?

I'm on the register by the way & have been for most of my life.

Andro Thu 11-Apr-13 23:41:12

50shadesofbrown - was that at me or OP?

YoniWankEnobi Thu 11-Apr-13 23:44:05

I'm on the register (and donated bone marrow to a relative as well as regular blood donations) and as I see it, I will be willing to give this to people whoever, I don't expect anything back. I just want to give something to someone to help them and hopefully save them when I have no need for it, and therefore I don't care if the person I donate to doesnt want to donate their organs if they die.

blueemerald Thu 11-Apr-13 23:56:02

RevoltingPeasant I totally agree with you and would do the same in those circumstances.
I think her suspicion is that the £20,000 fee a surgeon can earn from a transplant for a private patient might sway some to make a different decision than they might do otherwise. All doctors are only human after all and some have proved to be corrupt before. My mother worries that people do/will/could die because private patients are wrongly prioritised.

Catkinsthecatinthehat Thu 11-Apr-13 23:57:09

I'm on the donor register, but I know that if it came down to it my parents would refuse to donate my organs on religious grounds. I'd like a system in which my explicitly expressed wishes were respected, and the decision to donate was not one inflicted on relatives at a stressful time.

GoshAnneGorilla Thu 11-Apr-13 23:58:30

How the harvesting happens depends on the organ, but I can give some general insight.

As explain above there are very stringent tests and the patient is clinically dead.

The patient goes into theatre ventilated ( a machine is keeping them breathing) and is monitored by an anaesthetist. Harvesting tends to happen at night. There will usually be the same team in theatre through and everyone is very aware of the gravity of the situation. There is a definite sombre atmosphere in theatres when harvesting is taking place.

There will be a point during the surgery where the organ is ready for removal and they need to begin cooling the organ. It is around this point that the surgeon will indicate to the anaesthetist to switch of the ventilator. This is done and the patient will stop breathing and their heart rate will stop.

The transplant nurse is usually around, they will have often brought clothes that the family would like the patient to wear afterwards and the patient will be dressed once the surgery is finished (where the patient returns to afterwards depends on the hospital).

About a month to six weeks later, the theatre team will receive a letter letting them know what happened to the organs. It is amazing how many people can be helped from one person.

NeoMaxiZoomDweebie Thu 11-Apr-13 23:59:23

I feel funny about it. sad I don't know why. It's the thought of bits of me remaining after I'm gone.

Shite isn't it?

Baroozer Fri 12-Apr-13 00:35:09

All of my family are registered as organ donors. Most of them are doctors. The general consensus is that if you are not willing to donate, you shouldn't be allowed to receive.

Mrsdavidcaruso Fri 12-Apr-13 00:49:58

I would fight against any law that comes in to say that organs will be harvested (GOD I HATE THAT EXPRESSION) as a matter of course and without patients or relatives consent.

For a few reasons organs should be a gift from one human to another not a commodity to be taken and used without compassion and the interests of the donor and family taken into account

People have talked on here about the stringent tests being carried out on the patients, but how stringent will those tests be if organs are just used as a matter of course, will there still be the same sombre atmosphere in the theatre when the procedure is the 20th one to be done that day.

The money aspect could kick in when its realised it will take x amount of cash to keep one patient alive and it will save x amount of cash to give three people the organs, when the Drs know that the organs will be taken and used as a routine procedure with no chance of permission being denied by grieving relatives will the Drs fight for that 1 patient given that type of choice.

Many people will disagree citing the hippocratic oath that Drs take, and that may be the case or it may be the case that any Dr who wants to work within the NHS will have to comply with any new rules governing transplants that are bound to 'kick' in if Organ 'Donation' becomes mandatory instead of voluntary.


seeker Fri 12-Apr-13 00:59:05

"StuntGirl - please come back and explain why all your medically qualified relatives have cautioned you against registering. I find that really worrying, as I am sure others will too."

She won't be back. She was mischief making.

bootsycollins Fri 12-Apr-13 01:17:56

I think I know what stuntgirl might be getting at, I'm presuming it's an urban myth but I haven't looked into it but basically the story goes like this

" I don't have a donor card because no surgeons in the NHS will donate organs because since your brain dead at the time of organ donation they don't waste money on anaesthesia they just operate but the pain still registers"

GoshAnneGorilla Fri 12-Apr-13 01:29:31

Here is a good article discussing the story mentioned above:

I would say that just registering isn't enough. On Channel 4 news last night, I believe it said that there have been over 100 cases where the relatives of registered patients have refused permission for organs to be donated. So you really do need to let your family know your wishes.

GoshAnneGorilla Fri 12-Apr-13 01:29:41
sashh Fri 12-Apr-13 03:43:42

I'm not sure that they do know you don't feel anything during the ops. You're brain 'dead', by some definition, but they don't know if you can feel pain.

No you are dead, dead not brain dead. You heart has stopped beating, your lungs have stopped breathing. You are dead.

You are not on life support, being ventilated etc etc.

The article about 'flatlining' - there is no such thing, the only time an ECG or EEG has a flat straight line is when it's not connected to anything.

You can get an EEG signal from a jelly.

Andro - it wasn't aimed at any one in particular, just want to know what other people think. Dh & I both on register. He says his body can go to medical science when he's done with it, he won't need it & it may help others (research). Makes me queasy thinking about it but a) I know that he's only being logical & b) it's his body his wishes so I would respect it.

Btw I wasn't saying you can only have organs if you will give them - obviously some people can't, eg I had transfusion after labour due to PPH. I assume that affects the issue for a while. But if there is no medical reason why someone can't donate organs after they die, how can they expect other people to do it?

People have talked on here about the stringent tests being carried out on the patients, but how stringent will those tests be if organs are just used as a matter of course, will there still be the same sombre atmosphere in the theatre when the procedure is the 20th one to be done that day

They can only use organs from people who've died in very specific ways - usually RTAs. The number of RTAs is decreasing all the time. I very much doubt one hospital would have anywhere near 20 a day to deal with.

I'm on the register so is DP.

WeAreSix Fri 12-Apr-13 08:12:06

I'm a nurse. I'm on the register. And I've been present at heartbeating donors having organs removed. I wasn't put off it at all. Yes anaesthesia is used in the same way as a 'normal' operation - there's no evidence to show that pain still registers (that's what the brain stem tests show) but somehow it seems respectful and kinder to provide anaesthesia and analgesia.

FWIW I've never heard any medical person advise against being registered as an organ donor.

I'm a little fearful of being buried / cremated without being dead. So, being on the donor register is a little selfish in a way - having my organs removed means I will definitely be dead and there's no chance of waking up in a coffin!!

Having been told where many bodies go "for research" I'm not totally sold on that for me. Part of it is not having the body available for cremation/burial for a year or more.

It's worth remembering though that the team saving you is completely separate from the organ transplant team. There is no possible conflict of interest.

livinginwonderland Fri 12-Apr-13 08:31:34

i joined at 16 as soon as i could. my parents are also organ donors and are well aware of what i want to do should i die.

OnTheNingNangNong Fri 12-Apr-13 08:34:35

DH and I are on the donor register. It's never crossed my mind to not be on it. Id rather possibly be some use to someone by giving them life.

Although thinking about organ donation for my DC is harder, but we probably would donate to help save someone elses child, the comfort knowing that someone could benefit from the life my child cannot have. Preventing someone needlessly going through what we have.

I'm on the register. I think everyone should be.

Meglet Fri 12-Apr-13 09:03:08

Yanbu. I'm on there. My close family are on it too.

When Dad died the first thing we did was let the hospice know he wanted to donate and asked them to put the wheels in motion. Sadly they couldn't take any of them (not even his corneas) as he had been on heavy duty steriods and painkillers for cancer in his last days. But we tried.

xigris Fri 12-Apr-13 09:08:09

MrsDavidCaruso you're absolutely right. 'Harvesting' is a terrible term. I may sound a little pedantic, but the process of removing donor organs is referred to a 'retrieval' precisely because of this reason. I've been involved with the care of many organ donors so hope some of this helps:

Anaesthesia and analgesia are used in the operation

Most solid (eg heart, lungs, kidneys etc) organ donors are brain stem dead. This is most often due to a sudden, catastrophic brain injury most often caused by a brain haemorrhage or trauma. Two senior doctors have to confirm brain stem death, neither of which is a member of a transplant team. These tests are very involved and are used nationally.

In the UK, a private patient cannot 'jump' the list: the organ will go to the person in most need who matches the organ

A person suffering liver failure as the result of alcoholism will not be considered for transplantation unless they have been abstinent from alcohol for 2 years or more.

Every effort is made to save the life of the patient: it is only when it becomes obvious that no more can be done, that certain patients will be considered as potential organ donors.

Organ donors are treated with the ultimate dignity and respect at all times. Following retrieval, family and friends are able to spend time with the person in order to say goodbye. It is impossible to tell that the person has been operated on as they will have been washed and dressed, either in a hospital gown or in their own clothes; whatever the family / next of kin wants.

At present, the 'opt out' system for organ donation is not being brought in to use in the UK. There is a relatively new system of Specialist Nurses in Organ Donation being based in hospitals throughout England in order to promote organ donation and improve strategies for increasing donation rates.

Organ donation is the gift of life. The most important thing you can do is to make your family aware of your wishes. A lot of families get a huge amount of comfort knowing that even though something so tragic has happened to them, another life / lives have been saved. A single multiple organ and tissue donor (heart, lungs, liver, pancreas, kidneys, small bowel, corneas, bone, skin, trachea) has the ability to save and enhance many lives both directly and indirectly. The NHSBT website is excellent. Sorry! Hope this isn't too long and rambly! blush

thebody Fri 12-Apr-13 09:08:28

The reasons include being scared that doctors may not try hard to save your life as they want your organs.

Also it's the same type of fear that stops people doing a will, they see it as macabre or bad luck.

That's what was said to me when I was a nurse anyway, also religious considerations and sheer squeamishness.

It's a shame as it often provides some comfort for grieving relatives as they go through the journey of grief.

I think we need a good television campaign to address these fears and promote donation.

Mrsdavidcaruso Fri 12-Apr-13 09:09:50

Akiss - Organs maybe but if every part of a human body is deemed the hospitals property to be used how they think fit then it wont take long for the medical profession to see a dead person as just a storage unit for usable commodities - it would not just be major organs used and the new rules could encompass medical research as well

And if every person who dies in a large hospital is operated on as soon as they are dead and stripped of any useful organ then yes, it would become commonplace to the medical profession and I believe a lot of the respect for the dying/dead would go right out the window.

PseudoBadger Fri 12-Apr-13 09:10:50

I'm not, as they don't want you once you've had melanoma sad

Binkybix Fri 12-Apr-13 09:21:34

But most people are not suitable as a donor because of the way they died (I don't think), so it won't be every person who dies in a major hospital.

xigris Fri 12-Apr-13 09:26:49

Absolutely Binky. Most people who die in hospital are not suitable for organ donation. Also, the hospital team responsible for the care of a patient has no idea if that person is registered on the Organ Donor Register (only the specialist nurses have access to that database) plus all potential donors need involved virology screens etc which are not done routinely. So no, patients who might possibly fulfill the criteria for organ donation are most definitely not denied potentially life saving care or treatment! That is the stuff of horror movies!

ILiveInAPineappleCoveredInSnow Fri 12-Apr-13 09:28:46

I'm not- I don't really mind whether my organs are donated or not once I'm dead so my dh can decide if he ever needs to, since its my family left behind who'd be affected by any decision.

Fayrazzled Fri 12-Apr-13 09:42:45

I'm not on the register. When I was a law student I studied medical law and we had a lecture from a professor who was also a doctor and had been involved in heart transplants at Addenbrookes in the early days. He had very real concerns about the brain stem tests used and was concerned patients were not always technically dead when their organs were used for transplant. I can't remember the nuances of his argument now but it has stayed with me.

That said, if God forbid something happened toy husband or children I wouldn't be against their organs being used, but I would want to be involved at every step of the way. I know, in practice this happens, even if you are on the register, but there is a subtle difference for me. I don't want it just to be a blanket "yes" and I do think we have to be careful about a situation where there is a presumption organs are available for transplant and where we might end up in a situation where doctors aren't doing everything they can for a patient or where death is hastened t allow organs to be used. It might not be happening now, but it could happen if the presumption changes. I would not be in favour of an "opt out" scheme, I think it is right the organ register is an "opt in" scheme for this reason.

Have just registered, been meaning to do it for years, thanks OP

Mrsdavidcaruso Fri 12-Apr-13 10:02:46

Bxigris and binky - most people who die may not be suitable to donate major organs but if the state has carte blanche to use everything thing from a body there will be bits they can use either for a living patient or medical research no matter how the person died.
With a system that allows all organs to be used of course the the team who cares for the patient will know that if/when that patient dies some or all of their organs will be used.

As Fay says we cant look at the criteria that is now in use for voluntary donations if/when the rules change to say the state has a right to everything when a someone dies, the rules will change to reflect any new practises.

And yes that is the stuff of Horror films

If we had the opt in system, which I agree with, then we would need every technicality to be thoroughly documented. I had friends caught up in the Alder Hey scandal and if it had been the case of all of the parts and tissues being used for much needed reasons then their subsequent distress would have been less, but some of what was taken was hanging around in jars, not needed or used and corrupted through incorrect storage. Every part/tissue taken for research must be stored in a respectful manner, which will keep it good enough to be used in the future, or destroyed. We need clarification on some of the evidence of harvesting eggs from women and the subsequent growing of embryos for research, especially in conditions where there is evidence that those embryos could feel pain. I think that we should ask non donors their fears and address those fears, across the media.

Thank you op and thank you to whoever posted the link. I'm now registered!!!

squoosh Fri 12-Apr-13 10:57:45

I agree with Baroozer, if you are ok with the idea of being an organ recipient should your health require it well then you should feel morally obliged to register as a donor.

xigris Fri 12-Apr-13 11:22:49

Mrsdavidcaruso I honestly can't see such a scenario happening in the UK. If, and again, as far as I know, there are no plans to introduce an 'opt out' system of organ/tissue donation, then people will be able to sign an 'anti donation' register stating their choice not to donate their organs or tissues either for transplantation or research.

xigris Fri 12-Apr-13 11:23:36

Again, most important thing anyone can do is to ensure their family / next of kin are aware of their wishes regarding organ donation

KarmaBitch Fri 12-Apr-13 11:28:18

I know a lot of people who don't want to go on it. My question is then - what if it was for one of your kids/family? They quickly tell me that 'that's different.' I don't see how.

My attitude is (as morbid as it may sound) - if I'm dead then they're of no use to me. If they could prolong someone else's life, why not? After all, I'm not going to need then again, am I?

Katiepoes Fri 12-Apr-13 11:36:52

My uncle is alive because he has someone else's kidney. I can see no reason for not donating any usable body parts. Of course it's a choice - but without that person's choice my three cousins would have been left without a Dad at a very young age. Sign up and sign up now - for you UK people:

specialsubject Fri 12-Apr-13 11:45:11

I think it should be a simple like for like - if you aren't registered (or medically unable to register as are some on here) you can't have organs. Everyone is opted in, those who want to opt out do some when they are 18 (So all kids are eligible to receive organs)

we're all going to die. Grow up and accept the fact. It's not morbid, it's real life.

LadyBeagleEyes Fri 12-Apr-13 11:58:09

I haven't, I'm a smoker and have had liver problems so I doubt anybody would want me.
If my next of kin is asked (my sister or DS) I expect they'll say yes though.
Ds has registered, I've told him they can have all his organs, but not his eyes.

MsBella Fri 12-Apr-13 12:31:34

Because its their choice and a lot of people hate the idea of it, tampering with a dead person instead of leaving them to rest etc. I've had a fair few conversations with people who have their own beliefs about why they wouldn't want it for their family or themselves
I personally haven't registered and to be honest I probably never will unless something makes me change my mind.
When I was younger and first found out about it I told my mum I wanted to do that and she literally started crying saying please don't ever do that etc.

squoosh Fri 12-Apr-13 12:37:49

I'm willing to be that most people who hate the idea of their loved one's organs being 'tampered' with after death would have no problem with their loved one receiving an organ if they were in need. It's sheer hypocrisy.

MsBella Fri 12-Apr-13 12:43:33

Also some people have their own beliefs about what happens when you die which affect this decision

LadyBeagleEyes Fri 12-Apr-13 12:43:58

I agree Squoosh, of course they would, who wouldn't.

xigris Fri 12-Apr-13 12:52:55

There was a great documentary on organ donation a couple of years ago <helpful as can't remember any more details!> The film crew followed the family who took the brave decision to donate all the organs of the Mum who'd had a sudden catastrophic brain haemorrhage in her early 60s. They interviewed the daughter who was in her 20s a few months after her Mum's death. The daughter said that they were obviously still devastated but that the knowledge her Mum's organs had saved the lives of several people was a massive comfort. She also said (and I will always remember this) that they were grieving for her and not her liver, pancreas etc.

clucky80 Fri 12-Apr-13 13:04:46

I just wanted to give the point of view from a recipient... I had a double organ transplant when I was 26. I (and my family) would never have imagined that I would need an organ transplant and when I was told that this was my only chance we were all very shocked. In a very short space of time my kidneys had failed, my heart had been affected and I was told that I would be totally blind within a year. Receiving the gift of life from my amazing donor (with permission granted from his mum) has literally saved my life - I feel truly blessed and incredibly lucky to be healthy, to have been able to marry my amazing husband and also to have my miracle little boy after I had been told that it would be very unlikely that I would manage to fall pregnant never mind carry a child. I am in regular contact with my donors mum (my donor was 19 when he passed away) and she has told me that she takes so much comfort from the fact that from such a tragedy, her son has given the gift of life to me (and 4 others) and has allowed my parents to see me grow into adult hood. When I told her that I had my son she was so happy and said that at the time of making the decision to donate her sons' organs she could never have imagined that new life could be created out of his gift. My son's middle name is my donors name and when DS gets older I will be so proud to tell him about the wonderful young man and his family who in the face of such heartbreak made the brave decision to donate his organs and save mummy's life and let me give birth to my precious boy.
If people are really against organ donation and I do believe in people's right to choose, then please consider donating blood. After my transplant I had some complications and had internal bleeding - without receiving 4 pints of blood that night again I wouldn't be here.

Can we try and avoid using the word harvesting? I work in this area and just to say re the term harvesting - certainly where I am it is known as 'organ retrieval' as harvesting is seen to be a rather outdated and macabre term.

squoosh Fri 12-Apr-13 13:20:54

'Harvesting' makes me think of someone being drugged in a bar and then waking up to find themselves in an ice bath and minus a kidney.

LadyBeagleEyes Fri 12-Apr-13 13:24:35

Harvesting is a horrible word.
It should be donating or giving.

crashdoll Fri 12-Apr-13 13:30:26

I find it very hypocritcal that people would receive yet be unwilling to give (unless for medical reasons that means they cannot give). I am registered and have told my family my wishes and they respect them. I don't care who my organs go to, they are given with no conditions attached. So, even the selfish person who won't give but will receive can have my organs with my blessing. I won't need them, I'll be dead.

LyingWitchInTheWardrobe Fri 12-Apr-13 13:34:17

Thank you, xigris, for your post, very informative.

I'm on the organ donation register and my husband knows my wishes so there will be no delay.

I absolutely agree with MrsDavidCaruso (wasn't he fab in 'Game of Death'?) that there should be no blanket law in place to take organs if people haven't opted out. People's organs may be donated as a gift, they are not to be taken, not EVER.

I'm quite interested in 'living donation' and have been looking into it. I don't think it's as commonplace in the UK as it is in the USA. I've been told I have a very nice liver and super kidneys... <does a little twirl>... grin

I wouldn't mind donating a surplus organ. smile

Mynewmoniker Fri 12-Apr-13 14:08:13

Yes I'm on the register.

I love being of help so it's great to think I can still do it after my death. I won't need them so I'd be happy to freecycle them smile

MiniTheMinx Fri 12-Apr-13 14:14:55

I am very conflicted over this. I am not registered and neither are any other members of my family.

I would never accept an organ for myself.

The only way I would donate is if that were to save the life of a child. But I suspect I am far too old!

I am not religious but feel strongly that medical science over steps its useful remit in keeping too many people alive well into ancient decrepitude. If and only if advances in medical science are matched with advances in other areas such as economic/social production and standard of life, the way in which we live and the way in which we work to produce what we need, I can't see how a dwindling birth rate and an ageing population can sustain itself. Just as I can't see a good social/economic reason to give organs to adults over a certain age.

AnonYonimousBird Fri 12-Apr-13 14:18:34

Lots of people join, but then it's their relatives that override the decision when the time comes.

Honour the wishes of your dead loved one! Let their body go to good use, if that is what they wanted!

andubelievedthat Fri 12-Apr-13 14:20:12

prob. because due to a recent DAILY FAIL article, they sell them to rich ill peeps ,add to that they apparently will let you die to get your "bits" for aforementioned rich ill peeps, don"t matter the truth of article,it shits peeps up !thats is one of many reasons people do not sign up, and soon they will take them anyhow,cos its a business.and everything has a value .

Katiepoes Fri 12-Apr-13 14:30:42

In Holland if you have registered your family cannot refuse.

I like the opt out option - unless you specify that you do NOT want to have your organs used you are assumed to consent. That way people that do not approve of life saving measures can opt out and hope they are never the parent or partner of someone on a waiting list.

BTW Minitheminx please use some sense - people that receive organs are rarely at the point of 'ancient decrepitude'. The fact that they need an organ at all suggests it's unlikely they'd get that far.

Binkybix Fri 12-Apr-13 14:32:37

mrsdavid any opt in system that was being considered was not intended to allow any body tissue to be taken for whatever reason, it was about donation of organs to the living only (again I think), and in that case I don't think your scenario is realistic. Not sure that there would be a use for all that tissue you are envisioning being taken or orher reasons in any case?!

I too am against opt-out, though, I think. It makes me really cross that someone would accept and not give, and says a lot about them as a person, but I think it's just the way it has to be.

There was a thread on this a while bak that got pretty heated as I recall.

Binkybix Fri 12-Apr-13 14:33:42

Sorry, first para should say 'opt-out'

AmberSocks Fri 12-Apr-13 14:34:38

im not on the register and i wouldnt give my childrens or dhs organs away either.i wouldnt accept any for myself,or on my dhs behalf,im not sure about my children though.

MiniTheMinx Fri 12-Apr-13 14:37:21

Katiepoes, no, I was just saying that medical science is a wonderful thing, so advanced we keep people alive to face ancient decrepitude. I know that old people are not given organs. I am just reflecting upon the fact that advances in medicine in general are keeping people alive too long into old age.

What's age got to do with it mini doesn't a 60/70 deserve to watch their grand kids grow up and be a part of their life?
If someone views that a person is at that moment a top priority then so be it. It's not our decision to make and I thank my lucky stars that I'm not the one that has to make the tough decision knowing that what means life for one person means a death for another.

To not donate for no other reason than u might not approve of who it goes to is beyond weird.

Meglet Fri 12-Apr-13 14:44:50

I've often thought about what I would do if I was in the tragic situation to have to donate the kids organs, and I think (and hope) I would have the balls to go through with it. I'd hate myself if I wimped out and deprived another child / family of that chance.

Coconutty Fri 12-Apr-13 14:48:55

I don't understand why someone wouldn't accept an organ if they needed one. Would people honestly rather die and leave their children motherless than accept one?
I've been on the register for many years now.

squoosh Fri 12-Apr-13 14:52:31

Jehovah Witnesses refuse blood transfusions so I'm pretty sure this would stand for organs too.

Thank you xigris for your very informative posts.
I think the first temps we should take is refusing to allow next of kin to override people's well thought out wish to be on the register.
The need to be on the register before receiving a transplant in future may also concentrate people's minds. hmm

Good luck clucky80 my DH wouldn't be alive today either if it hadn't been for his donor's family.

squoosh Fri 12-Apr-13 14:57:47

What's the point of there being a register if relatives can override your decision. I suppose most people would honour the wishes but I bet a significant number don't.

125 in the last year

MiniTheMinx Fri 12-Apr-13 15:00:26

47% of UK benefit spending goes on state pensions
£4 million pounds a week is spent keeping elderly people in hospitals.

Unless a way can be found to care for an ageing population that doesn't significantly reduce the overall standard of life for children and families, I see no good reason why medical science should continue down the road of extending life, by that I mean not individuals but the ages to which we are now living. There was a time when diet, basic health care and good hygiene extended life, from around 35 years in the 1300s to 60/70 years. Quite why we need lots of people living into their 80/90s is beyond me.

How many working mothers have time to deliver meals on wheels and offer 30/40hrs of unpaid care to elderly relatives?

As regards approval, I remember lots of people discussing whether George Best should have received a liver. I didn't have an opinion on that and I still don't.

MsBella Fri 12-Apr-13 15:04:55

When a loved one has just died it could be unthinkable saying yes tto something which involves cutting their body open
Most of the time you won't be thinking in 'this could help other people' terms because you'd be grieving too much
Personally I can imagine just wanting to leave the body how it was without tampering with it before cremating the body. It would be a hard decision to make during such a horrible time, it would be hard to say yes to something like that for a lot of people

MsBella Fri 12-Apr-13 15:07:15

Also I think george best deserved another liver, he had a disease (alcoholism)

OhHullitsOnlyMeYoni Fri 12-Apr-13 15:09:05

I am registered and carry the Donor Card. My friend had a heart replacement so it means a lot to me. I also put the link up on my fb once a year in the hope my friends will sign up. So far I know 4 have smile

OhHullitsOnlyMeYoni Fri 12-Apr-13 15:10:40

I think you can't do much better with your own life than give it to others. Even if your life was completely useless you helping someone to live after you die is amazing.

Binkybix Fri 12-Apr-13 15:10:49

Difficult, yes, but many do it. I think a lot of people actually take comfort in having helped others.

Nevertheless, if people will neither donate or accept I've no problem with that. But if people are willing to benefit from others making that difficult decision, I think they should be willing to make it too.

AnonYonimousBird Fri 12-Apr-13 15:12:42

Should people not be allowed a blood transfusion if they won't donate blood (medical reasons excepted)? In the case of a massive shortage - which can happen - should someone get priority on a transfusion because of their blood donation record?

squoosh Fri 12-Apr-13 15:15:02

MsBella I'd be pretty hacked off if my family went against my wishes regarding organ donation. The decision was made, I made it years ago.

And I really don't see how 'tampering' with the body as you call it makes any difference if they're going to be cremated anyway.

By all means decide this for yourself but don't go against clearly expressed wishes.

Andro Fri 12-Apr-13 15:17:08

MsBella - it is hard, brutally so. My DH had to make the decision wrt his Dsis, he knows it was the right thing to do (and her wish in that situation) but it kills him that in making that choice he made his nephew's grief far worse.

pedrohedges Fri 12-Apr-13 15:18:28

I am registered as is my oh. But our 3 children are not.
We have decided to wait for the children to turn 16, then they can decide themselves. I don't like the idea of donating somebody else's body parts.

Lemonylemon Fri 12-Apr-13 15:26:55

I'm not sure that they do know you don't feel anything during the ops. You're brain 'dead', by some definition, but they don't know if you can feel pain. I read a Nature letter saying there needed to be more research in this area.

There are several tests which are done:

The pupils are fixed and do not respond to sharp changes in the intensity of incident light. (mesencephalon, II and III).
• There is no corneal reflex (pons, V and VII)
• The oculo-vestibular reflexes are absent. No eye movements are seen during or following the slow injection of at least 50mls
of ice cold water over one minute into each external auditory meatus in turn. Clear access to the tympanic membrane must be
established by direct inspection. (pons, VIII, III, IV, VI)
• Access to the above reflexes may be prevented on one or other side by local injury or disease but this does not invalidate
clinical testing. In the case of bilateral injury or disease, ancillary testing should be considered.
• No motor responses within the cranial nerve distribution can be elicited by adequate stimulation of any somatic area, e.g. by
supraorbital pressure and pressure applied to the nail bed of a finger (the latter may be contra-indicated by a spinal injury).
Care must be taken to distinguish central response from primitive spinally-mediated reflexes that can be ignored in this context.
• There is no cough reflex response to bronchial stimulation by a suction catheter placed down the trachea to the carina, or gag
response to stimulation of the posterior pharynx with a spatula (medulla, IX, X). (C&P from NHS organ donation article).

I can attest to this, I sat and watched the doctors carry out all these tests on my fiance when he died. He was on the Donor Register and to not honour his wishes would have been wrong of me. After all the tests had been carried out, he was kept on oxygen and then the tests started to ensure that he could donate his organs. I do know of one life extended through his donation.

After my daughter was born, I put myself on the Donor Register.

MsBella Fri 12-Apr-13 15:35:26

There are other things to think about aswell, there have been many cases where someone who got a donated organ took on personality traits of the donor, even people who have woke up with a different accent! It is said that every cell of our body is concious. Memory and traits aren't only stored in our brain

This thread has got me thinking

seeker Fri 12-Apr-13 15:38:53

" there have been many cases where someone who got a donated organ took on personality traits of the donor"

No there haven't!

MsBella Fri 12-Apr-13 15:40:09

Well yes there have, its just a fact...

I find this tricky. I'm not on the register, but don't care if Dh chooses to donate my organs. I'll be dead. Dh wants to donate everything but his eyes, so I know his wishes and could go through with them. God forbid it was ever my DC....I don't think I could bear to be that selfless.

LyingWitchInTheWardrobe Fri 12-Apr-13 15:44:41

MsBella... I believe that was a FILM with Jane Seymour in it.

'Your' thread was YESTERDAY... today is a whole new day.

MsBella Fri 12-Apr-13 15:46:24

I haven't watched what ever film you're talking about but I know for a fact there have been these cases. Even people waking up with a new accent in the news! All our cells are concious it is believed

Pickles101 Fri 12-Apr-13 15:47:50

hmm and just a few posts or so ago this was a nice thread about encouraging organ donation.

MsBella Fri 12-Apr-13 15:52:34

Not disagreeing with organ donation at all, just something to think about, very interesting and quite scary actually

OhHullitsOnlyMeYoni Fri 12-Apr-13 15:53:23

This is on 4od atm - think this is what Bella is thinking about? I know it bothered my friend as she waited for a donor. However now she has had it she is not one of the 2% and so hasn't thought of it since. The people in the film don't seem to have been harmed because of it, it seems to be a partial thing, not an all invasive one, and a minute percentage of patients are reported to have experienced it.

If you can confirm you would rather die than suddenly like chillis then I am sure this docu would put you off...

OhHullitsOnlyMeYoni Fri 12-Apr-13 15:53:46
Binkybix Fri 12-Apr-13 15:54:59

Where's the evidence of this? Apart from your assertion that it's a fact?

MsBella Fri 12-Apr-13 15:55:22

Haven't watched that but probably will now!

Mrsdavidcaruso Fri 12-Apr-13 15:58:15

SOD right off Mini - you tell THAT to my 82 year old Dad who is still working and paying tax I will give you his number then you can ring him up and tell him that if by next year he needs medical care you don't think his life is worth extending and why the fact that he is still fucking alive is beyond you. And while you are at it you can write him a cheque to pay back some of his tax and NI contributions which helped pay for the hospital you were born in and the school you went to, plus the money he put into the system to pay the pensions of your own grandparents and great grandparents.

Thats was nasty mean post and nothing to do with what we are discussing

You should be ashamed of yourself

Lemonylemon Fri 12-Apr-13 16:02:58

That's right Mini - make 'em all into little biscuits......

Fillyjonk75 Fri 12-Apr-13 16:08:42

I think organ DONATION is great, but I'd worry too much about a system where it was completely left with doctors to decide.

What we need are viable artificial organs. Even if everyone was on the organ donor list, surely with modern medicine increasingly able to save lots of people having accidents or illness where on death, donating organs might be an option, and if we improve road safety, the number of available organs will never increase to the amount needed.

I'd just worry that if "donating" were compulsory doctors might be tempted to make value judgements of one life over another.

Mini, my DH's life has been extended by 30 years, so far, should they have let him die at 21? He's paid tax all those extra years.
MsBella, you can't just spout spurious nonsense and then insist that it's FACT!

stuffthenonsense Fri 12-Apr-13 16:13:45

I'm not on the register but that doesn't prohibit being asked in the event.
My reticence is purely emotional and support. Having sat with my father as he was dying, (from cancer and at home so not eligible before I get flamed) I know that his very last moments were eased by the fact that he could (just about) look me in the eye, there was an urgency, a need for someone to love him in those moments and we sat together like that, hand in hand until he had drawn his very last breath (well even after to be honest). I could not bear, under any circumstances, kissing my loved one goodbye and sending them to a theatre to draw their last breath, even if that was assisted, without a loved one there with them. Now if THAT issue could be dealt with then the last of my concerns would be dealt with

The doctors fighting to save your life are quite separate to the Transplant team, there is no conflict of interest.

Smellslikecatspee Fri 12-Apr-13 16:17:22

" there have been many cases where someone who got a donated organ took on personality traits of the donor"

And in the main the changes in the person could also be attributed to the immunosuppression drugs they also need to take, from change in hair textures and lightening or darkening, changes in taste to loss of fingerprints(seriously).

So how much is the Donor families parents wanting to see something of their lost one in the recipient?

How much is the drugs?

And oh course if you have been on a waiting list that has to change you as a person and then been given such a gift from people who are in grieving and loss.

That has to affect most people deeply.

I know a few people who have had organ transplants, 2 became much more extrovert, travelled, felt very strongly that that had to make the most of what they had been given.

One became much more introverted, felt very much that they had been given this precious gift and had to protect it at all costs. No foreign holidays (just in case they got delayed and ran out of meds)actually lots of just in cases, but hey they were happy.

Ps: Foreign accent syndrome, very rare, is due to brain damage, and recent research has shown that the person isn’t actually talking in a foreign accent more that their pattern of speech has changed and it is how the listener interprets it . This is why Linda Walker a lady from Newcastle(post stroke) is described as having a Jamaican, French Canadian, Italian, and a Slovakian accent dependent on who is doing the listening . . .

There has been no verified case where a patient's foreign language skills have improved after a brain injury or suddenly developed the ability to speak a new language.

Personally, once I get to a point where I cant express my own needs/wants, be it because of injury or disease thay can take what they want.

LadyBeagleEyes Fri 12-Apr-13 16:17:23

Snorting with laughter at MsBellas's post.
And yes, Mini, let's have a cut off age for the elderly, how about 80 and then euthanise them? hmm

Ok firstly it is NOT harvesting, it's donating organs/tissue that is no longer needed by someone because they are DEAD.

Personally I see it as nothing but hypocrisy at its worst. If your loved one was dying and the only thing that would save them is blood or an organ then you would take it surely?! Yet find it perfectly ok not to donate to someone else in the same position even though you or a loved one is dead.

Regardless of what happens to the soul or spirt, death of the mind and body is just that. Those organs that are no use to you nn ever again will be could change and save many people's lives.

Although bare in min this is my opinions a parent of a son who is very likely to one day rely on the kindness of someone to donate an organ in death so he can live.

We donated anything we could of my Mums, sadly it was only her corneas, tendons and some skin that was suitable but it. Was at least something.

MsBella Fri 12-Apr-13 16:17:47

I have researched it for a long time so no its not nonsense...

Pickles101 Fri 12-Apr-13 16:20:06

Oh ok then hmm

Lemonylemon Fri 12-Apr-13 16:20:10

Stuff Not going to flame you at all. The nurse from the organ donation team was really kind to me. I didn't realise that my fiance was on the register, so came as a bit of a surprise (not a shock, because he was that kind of man). The nurse was lovely. She explained the tests that they would carry out at the end to determine brain stem death and then what happens when the organs are taken. I stayed with my fiance until some hours after his death.

Pickles101 Fri 12-Apr-13 16:20:48

Yy to Smells and Tits and all those likeminded before them smile

No, MsBella it's bollocks, I was being polite!

MsBella Fri 12-Apr-13 16:24:35

If you do a bit of research like I did and you'll see where I'm coming from

LyingWitchInTheWardrobe Fri 12-Apr-13 16:28:34

Lemony... really good to read your posts. I'm glad your awful experience was dealt with kindly and with understanding.

Pickles101 Fri 12-Apr-13 16:29:11

Bella, maybe try reading a referenced article by a professional and not The Sun.

Katiepoes Fri 12-Apr-13 16:29:16

MsBella you are coming from the Land of Woo.

How would an organ carry personality traits? Really explain to me, I love a good possession tale.

LyingWitchInTheWardrobe Fri 12-Apr-13 16:31:18

This thread is going to be derailed with crap it seems. It's a shame because organ donation is such an important topic. sad

MsBella Fri 12-Apr-13 16:33:01

I can assure you I don't read the sun and even if I did, do you really think a newspaper would tell this to the public!? Nope of course not
And katie it is believed that every one of our cells are concious

Its good to find out different sides to things like this

Evilberry Fri 12-Apr-13 16:33:14

Ms Bella as you've done research, please could you post some links or state sources?

MsBella Fri 12-Apr-13 16:35:10

Trust me my research can't just be linked to on a website...

I suggest that anyone is interested finds out a few different sides to all this it really is good to get thinking about things differently, opens your mind a bit more which is always a great thing!

Evilberry Fri 12-Apr-13 16:36:06

For years I believed that as a Type 1 diabetic I couldn't register, but this thread has made me check and I can donate. Registered today

MiniTheMinx Fri 12-Apr-13 16:36:23

I don't believe that elderly people shouldn't have care or pensions, I don't think things can go on as they are though. It isn't wrong to extend someones life, it isn't wrong that medical science can extend the age to which most of us will live. What is wrong is the socio/economic system that we have. Elderly people are clogging up hospital beds because there is no where for them to go. What is the point in medicine keeping people going if we can't afford either the time or the money to care for them.

I am also inclined to question why organs are being sold to overseas patients.

The NHS is being privatised in a piecemeal fashion, more and more services offered by private companies, all of which have the right to use the NHS branding, so that most people have no idea. Will you trust private hospitals not to sell your organs for profit, afterall they will only be offering you health care for profit. I wonder what will be more profitable, keeping people alive or selling organs to privately funded patients, who have private health insurance or better still can pay up front.

Pickles101 Fri 12-Apr-13 16:37:20

Ms Bella as you've done research, please could you post some links or state sources?

Trust me my research can't just be linked to on a website...

or state sources?

Smellslikecatspee Fri 12-Apr-13 16:40:56

Thank you Pickles101

MsBella please state your sources, be so good as to only include the peer reviewed studies not 'Take a Break' magazine.

musicmadness Fri 12-Apr-13 17:00:15

I'm on the donor register, and my next of kin know my wishes. They can take whatever they want from me, I'm not going to need it and if it can do some good somewhere then all the better. I don't care where the organ is going, whether to a 75YO or an 18YO, here or abroad, a life is a life and they are going to get far more use out of it than me!

I think it is probably helpful to be on the register because if the situation arose and your family was grieving it would be a reminder of your wishes at a very difficult time.

I don't think the next of kin should be allowed to over rule the decision anyway, anyone on the donor register should be automatically eligible regardless of NOK wishes IMO. Likewise in opt out systems the NOK should not be able to over rule someone who has said they don't want their organs donated. I think NOK should only be consulted if a persons wishes were not made clear during their life time.

Mrsdavidcaruso Fri 12-Apr-13 17:02:59

No Mini read your post agin you actually said and i will copy and paste
Quite why we need lots of people living into their 80/90s is beyond me.

Not all elderly people 'clog up beds' and why if you don't believe that the elderly shouldn't have pensions did you bother to post the % of 'benefits' going to pensioners if you didn't want to make a point about how much its costs todays tax payers ( and that does include my 82 Dad who still pays tax and the 1000s of people over pension age who still pay tax) and BTW are STILL helping to pay for children and families

I am surprised you didn't include the word 'Boomer' in your nasty post

MsBella Fri 12-Apr-13 17:08:08

Sauvignon this is something I did a lot of years and years ago before I even had DCs, no time for all that these days
Anyway no take a break for me...
If you are interested there are a lot of non mainstream sources to get different theories and studies from, it really is great to build up an opinion from all sorts of theories and stuff it opens your mind a lot, back in my protest and volunteering days I met a lot of interesting people, some had studied different sciences for years and had degrees in that kind of thing, also looking around the internet like putting some key words into google will bring up different stuff about all this

Thurlow Fri 12-Apr-13 17:08:28

I'm registered, DP is registered, and after the press yesterday we have just registered 15mo too.

I do understand what other posters are saying about wanting their DC to make their own decisions on this, and when DD is much older I will tell her and if she wanted to withdraw from the register then she can. However, until then, as her parent we make choices for her and this is just one of those choices.

Should the very worst happen, I would want anything good to come out of it that could.

You said your research couldn't be done on the Internet. An enquiring mind is one that is keen to share knowledge.
I'm quite busy on my Masters on the moment so surely you could cite your research?

xigris Fri 12-Apr-13 17:11:57

Mini organs are not sold by the NHS to overseas recipients! Sadly, there most likely is a black market for organs but not from the NHS!
Evil well done! That's brilliant that this thread ahead inspired you to join the ODR smile Do discuss your wishes with your family though as under current legislation your next of kin can still decline consent.
MsBella if you cannot back up statements like that without recognised research then I don't think it's wise to air them in this fashion. Everyone is entitled to a point of view, but I think that when it's such an emotive subject and when other posters have shared such personal stories it's unfair to give people the heebie-jeebies without being able to back it up. Smells explained the very rare Foreign Accent Syndrome very well.
All the stories here from people who've been directly affected by organ donation / transplantation have been amazing. smilesmile and of course sad for all of you who have lost loved ones.

MsBella Fri 12-Apr-13 17:15:19

Sauvignon, I'm only speaking from my experiences. And I didn't state that it can't be researched on the internet...
Also I don't understand your last line, what relevence is that...

notyummy Fri 12-Apr-13 17:17:28

DH and I are both registered, give blood and are on the Anthony Nolan register thing. I struggle to find time to volunteer to help with anything else, so realistically this is the nearest we can get to 'giving back' to society at the moment. It's really not hard.

And as to some of the barking mad stuff being alluded to on here.....


Oh actually, I have thought of one.....


MiniTheMinx Fri 12-Apr-13 17:20:29

My father is 82 as well and he is trotting about doing charity work and organising day trips for deprived children.

Why we need lots of people living into their 80/90s is beyond me because society doesn't give a flying fuck about looking after them. THAT IS MY POINT ! unless we can find economically sustainable ways of caring for everyone then we have a huge problem ahead of us. Elderly people are being left to rot, their families are too busy to care, with women out at work full time. A huge percentage of families are in receipt of tax credits & even HB whilst both parents work. How many people care for their elderly relatives ? How can we afford to care for our elderly? why are services being cut? The state pension makes up a huge slice of the welfare budget but it is by no means enough for people to pay for their own care is it? We have a problem. We have an ageing population and falling birth rate, growing dependency upon welfare combined with higher costs, costs that will no doubt spiral out of control once everything incl health is completely privatised.

Does anyone on here know how long after having a baby you can donate blood again? Also does breast feeding effect it? I need to get back down the clinic as soon as I'm allowed <it's the free biscuits that tempt me back each time wink>

xigris Fri 12-Apr-13 17:23:52

Tits ( great name BTW) it's a year after giving birth

fallon8 Fri 12-Apr-13 17:24:05

I have been treated for cancer,therefore I am not eligible ,do don't assume.OP that some of us are just bring diffi

musicmadness Fri 12-Apr-13 17:26:23

Titsalina - 6 months I think. Not certain about whether breast feeding effects the time scale.

musicmadness Fri 12-Apr-13 17:27:30

Mentions pregnancy here with regards to blood donation.

MiniTheMinx Fri 12-Apr-13 17:27:30

"Organs from British NHS donors are being given to private foreign patients ahead of desperately-ill Britons, it was revealed last night.
Some 50 livers were given to patients from Cyprus, Greece and other countries last year, even though 259 British patients were waiting for life-saving transplants.

The figures, uncovered by freedom of Information requests, triggered outrage. Professor Peter Friend, president of the British Transplantation Society, said: 'While there is a surfeit of UK residents awaiting transplant they should have a priority" 2009

"Scarce donor organs meant for NHS patients are being sold to wealthy foreigners for tens of thousands of pounds.
A leading hospital has confirmed that 19 private overseas patients bought donated livers in the past two years.
Such organs are in short supply. Of the 550 NHS patients waiting for a liver, one in six is expected to die before they can get a transplant" 2013

"The shortage of an indigenous “supply” of organs has led to the development of the international organ trade, where potential recipients travel abroad to obtain organs through commercial transactions. The international organ trade has been recognized as a significant health policy issue in the international community. A World Health Assembly resolution adopted in 2004 (WHA57.18) urges Member States to “take measures to protect the poorest and vulnerable groups from ‘transplant tourism’ and the sale of tissues and organs”.2 Despite growing awareness of the issue, the reality of the international organ trade is not well understood due to a paucity of data and also a lack of effort to integrate the available information"

Are people happy to donate organs when many of the services are being privatised. Would you be happy to donate organs to a private hospital as an NHS patient, knowing that organs can be "sold" to paying recipients?

notyummy Fri 12-Apr-13 17:28:05

Fallon - of course there are vairty of perfectly valid reasons why someone why not be on the register. I think most people who ARE on the register would completely understand that.

LadyBeagleEyes Fri 12-Apr-13 17:28:23

MsBella 'I'm only speaking from my experience'*
So you've actually met people with donated organs that have started speaking in a foreign language?

MsBella Fri 12-Apr-13 17:30:58

Ladybeagleeyes if you read what I said you'd know what I was talking about..
my experiences include ha

MsBella Fri 12-Apr-13 17:33:16

And whether I'm right or wrong it shows the different opinions people have which can explain why people choose not to donate their organs, its their choice what they do with their own body. Also it goes against A LOT of peoples spiritual beliefs

PSEUDOBADGER - where did you hear/read you can't donate if you have had melanoma?

xigris Fri 12-Apr-13 17:35:42

Tits it is 6 months after giving birth that you can donate blood. My bad blush

Sorry MsBella, I ment to say a Healthcare Masters, the relevance being that you would know I meant proper medical research not this sort of rubbish.

Talking to 'interesting' people on your travels is not research. hmm

MsBella Fri 12-Apr-13 17:42:37

Sauvignon, I don't read the sun. I have met people who have studied sciences just like you who's research has formed their evidence that all cells are concious etc.

MsBella Fri 12-Apr-13 17:43:32

Also mainstream science isn't the only science, there is a lot we aren't told

PseudoBadger Fri 12-Apr-13 17:45:09

Goody - taken from this document:

"In addition, it is highly likely that donors with the following conditions will also be declined, although there may be occasions when organs are accepted if the alternative for a specific recipient is imminent death (e.g. from fulminant hepatic failure):
• melanoma (except local melanoma treated > 5 years before donation)
• treated malignancy within 3 years (except non-melanoma skin cancer)"

When I was stopped giving blood, I looked into whether organ donation was also likely to be an issue. I found something like the above, and there are several scientific papers along this line.

clucky80 Fri 12-Apr-13 17:49:10

Hi sauvignon, sorry I have just seen your post as I have been at the hospital all afternoon (not related to my transplant though). I am so pleased to hear that your husband is well now, organ donation really is one of the most fantastic advances in modern medicine. I wish him many years of good health.

Re the age thing, my kind of transplant is restricted to patients under the age of 55/60 as it is such a massive surgery with quite a few risks.

msbella I can assure you that I certainly haven't picked up any traits from my donor and unfortunately my language capabilities are still the barely conversational French and German I had prior to transplant. In terms of me as a person, I have changed - I appreciate every day of good health I have; I count my blessings every day for the massive increase in my life expectancy and I try not to sweat the small stuff.

LadyBeagleEyes Fri 12-Apr-13 17:50:13

So MsBella would you accept a donated organ for yourself or your child?

mainstream science isn't the only science, there is a lot we aren't told
OK... hmm

xigris Fri 12-Apr-13 17:53:57

Loved your story Clucky. Beautiful that you named your son after your donor smile

Thanks Clucky, DH's kidney came from Wales and he still can't speak a word of Welsh. wink
These threads both inspire me with stories like yours and frustrate me with people's ignorance.
I'll try to concentrate on the sensible ones. smile

MsBella Fri 12-Apr-13 17:55:11

Ladybeagle by the way I haven't said organ donation is wrong... I'm saying there are different things to think about. Also I don't believe that there is anyone who deserves an organ more than other people as we are all equal (children are a priority of course though!) I mean about the george best thing for example, there were people saying he didn't deserve another donation because he ruined it himself by being an alcoholic

Its best to open your mind and not believe every single thign that is fed to you in my opinion, there's a lot to be leanred which is great!

3littlefrogs Fri 12-Apr-13 17:57:13


I am so sorry for your loss. Your fiance must have been a good, kind and generous person. I really admire you for ensuring that what they wanted was carried out. It must have been an awful time for you. sad

One of my patients has had a heart transplant. He and his family are thankful every single day for the life he was given by an altruistic person and their grieving family.

Evilberry Fri 12-Apr-13 18:04:21

Thanks xigris

I think that I'm just going to ignore the scientific proof from the "woo/make believe sciences" and stick to the mainstream

crashdoll Fri 12-Apr-13 18:18:56

As usual, important threads get derailed by a select few who can't bear not being the centre of attention.

MsBella Fri 12-Apr-13 18:20:41

Crashdoll people have different opinions, its how the world works

Ledkr Fri 12-Apr-13 18:23:00

Ds has been waiting a year for a kidney which is remarkable considering there are normally two in a donor.
It's certainly made us all register rather than leave it to chance.

Mrsdavidcaruso Fri 12-Apr-13 18:24:11

Rubbish Mini I know plenty of people who DO care for their elderly relatives, I know plenty of elderly who have to sell their homes to pay for their care and NOT all elderly actually need residential care I know plenty of elderly who are still productive members of society who still work or volunteer and still contribute.

If there is a problem with the amount they are costing don't blame the elderly its not their fault.

You still ask why do we need the elderly what would you do - cull them all when they get to age 80

All the best for your DS Ledkr. smile

Binkybix Fri 12-Apr-13 18:31:05

Lots of people can back up their opinions with evidence though. It's how the world of science works....

thermalsinapril Fri 12-Apr-13 18:33:20

> You're brain 'dead', by some definition, but they don't know if you can feel pain.


thermalsinapril Fri 12-Apr-13 18:33:41

If there was a guarantee of a full anaesthetic I'd go on the register.

Ledkr Fri 12-Apr-13 18:37:22

Thanks sav
thermals I share your fear.

Pickles101 Fri 12-Apr-13 18:42:58

thermals I think that worry has already been addressed, further up the thread.

crashdoll Fri 12-Apr-13 18:45:35

MsBella yes but some people do have a habit of derailing in order to make them the centre of attention. That's just my opinion.

MsBella Fri 12-Apr-13 18:49:18

Oh so just a coincidence that you'd bring it up now then... <rolls eyes>

Sirzy Fri 12-Apr-13 18:51:01

Ledkr - I hope your son gets his donor soon and it all goes well.

GoshAnneGorilla Fri 12-Apr-13 18:55:37

MrsDavid - You mentioned up thread about research. Can I just say that there is now a lot of governance and regulation with regards to research.

Any member of staff involved in a research project has to have special training with regards to research ethics and side effects. A Research project has to go before an independent ethics committee which consists of legal and medical professionals as well as lay people and there is a lengthy approvals process before any research can take place.

Here is more information about how trials are regulated .

Clinical trials are absolutely vital to make healthcare better and safer, so it's important that people have the right information.

LadyBeagleEyes Fri 12-Apr-13 18:57:31

Oh, Ledkr.
I hope you get some good news soon.
All the best to your ds.

crashdoll Fri 12-Apr-13 18:58:38

MsBella Because you were making ridiculous claims with no evidence and therefore, risking putting people off saving lives. That's pretty low in my book. If you have evidence, I will debate it with you but you appear to be just derailing. Oh I can roll my eyes too btw. smile

clucky80 Fri 12-Apr-13 19:09:39

Thanks xigris.

lekr best wishes to you all and I hope that a kidney comes up for your DS soon. The wait is so hard, I had 3 call ups in the end but it was definitely worth waiting for the right organs. I had my creatinine checked last week - it was 70 and that was one of the best levels I have had in the 6 years since my transplant smile

MsBella Fri 12-Apr-13 19:15:30

Crashdoll, I have MY evidence and oh my god I was not putting people off saving lives, I was giving my view and people can do whatever they want to with the information.

Pickles101 Fri 12-Apr-13 19:26:21

But what is YOUR evidence Bella? You haven't told any of us what you've read, you've just said that you can't tell us and that we should do our own research hmm

MsBella Fri 12-Apr-13 19:32:20

Pickles my own evidence is based on views I've built up from what I've heard from people who have studied science, internet and other sources you know... youu form opinions over time really... when I was younger before I had DCs I was into all sorts of issues, protests and all that and I met a lot of people who had degrees in different sciences, if you had heard what they had to say you'd really start to wonder...

Also I haven't ever said organ donation is wrong or anything hmm I give blood when I can and we do what we can to help people, organ donors are just trying to help but people do have spiritual beliefs surrounding parts of the body and death which mean they can't be an organ donor

That's not evidence, it's opinion and anecdotes.

MsBella Fri 12-Apr-13 19:36:05

Also your evidence is from what you've been told unless you have a donated organ in your body. Just like my evidence..

LyingWitchInTheWardrobe Fri 12-Apr-13 19:37:30

<sits ponderering the possibilities and apparent clear evidence of live brain donation> hmm

Ledkr... sorry to hear about your son, I hope a suitable donor is found for him very soon.

I have not cited any evidence, just an anecdote about my DH confused
Do you mean to be so irritating? I do hope you don't.

LadyBeagleEyes Fri 12-Apr-13 19:39:52

I quite fancy a new organ now if it means I can suddenly be fluent in another language.
I wonder if I got Usain Bolt's heart I'd be able to run really really fast.
And what if I got one of a serial killer?
The mind boggles.

MsBella Fri 12-Apr-13 19:43:46

Sauvignon, your views must come from somewhere, you must feel that there is evidence for your claims aswell... but I haven't asked for links and sources for your views!

Sirzy Fri 12-Apr-13 19:46:49

But it is you who is coming out with rather extreme views so its understandable people will question that!

<<steps away from a thread about a subject which is important to me and my family in an attempt to stop it being derailed by a self important tosser>> sad

seeker Fri 12-Apr-13 19:49:07

If somebody expresses views which are wildly at odds with what is the generally accepted knowledge, it is up to that person to provide evidence. Particularly if that view is alarmist and likely to put people off something like registering to be an organ donor.

So, missbella. Where is the evidence that somebody who receives a donor organ takes on some of the personality and knowledge of the donor?

Honsandrevels Fri 12-Apr-13 19:52:25

I have a transplanted organ in my body and am the same as I was pre-transplant apart from no longer being on the brink of death.

Pickles101 Fri 12-Apr-13 19:53:23

"My own evidence is based on views"

Ah, you're one of those rare people that confuses opinion with evidence. Where you have based your evidence on views, I have based my views on evidence.

FWIW my OH is on the waiting list for a new liver. And whilst I admit a personality transplant would be the most appealing thing about it (he is a stubborn arse) - it's BS, so I won't be holding out for it.

I take it you have no first hand experience with organ transplantation - scientific or personal.

Pickles101 Fri 12-Apr-13 19:54:27

Yy seeker

beginnings Fri 12-Apr-13 19:56:32

I am registered and have been since I was 16. I persuaded DH to register a couple of years ago - he felt "funny" before that but I told him, since he wants to be cremated (as do I - I take up enough room alive, I don't need to be continuing to crowd the place once I'm dead), I didn't see the point of NOT being on the register.

DD is also on the register - as will be DBump. I understand what someone said upthread about leaving it up to them to decide but the idea of losing her is so horrendous, if I do (heaven forbid) and I could help just ONE more family NOT go through that, wouldn't that be worth it? I hope I raise my children to think the same way.

I'm also in favour of an opt-out situation. If you can extend life, and give people a good quality of life, it's the right thing to do. Also, if there's no suitable recipient in the UK, then anyone in the world who is suitable should be able to be a recipient. My decision to donate is not based on nationality!!

Best wishes to all of you, or your loved ones, waiting for a donor.

MsBella Fri 12-Apr-13 19:57:36

Well I'm not a scientist so JUST LIKE EVERYONE ELSE my views come from what other people teach me. There is no difference at all.

And not once have I said organ donation is a bad thing

Kyrptonite Fri 12-Apr-13 20:02:54

I'm on the register, DP is on the register but he didn't want me to tick the box for the DCs when I registered them at the drs. I would like to say if I was ever in the position that I had to consent to donating either of the DCs organs then I would agree to it but he is very funny about them not being buried intact IYSWIM.

It's a really tricky one.

seeker Fri 12-Apr-13 20:06:06

"Well I'm not a scientist so JUST LIKE EVERYONE ELSE my views come from what other people teach me. There is no difference at all.

And not once have I said organ donation is a bad thing"

So you don't think impressionable people might be just a bit put off by thinking that bits of their personality might be wandering round in somebody else's body? Please will you give some idea which "other people" taught you this?

MsBella Fri 12-Apr-13 20:08:17

I'm not repeating myself again sorry... I'm within my rights to say my views

Pickles101 Fri 12-Apr-13 20:09:23

You wouldn't be repeating yourself. You haven't said ONCE where you got this bullshit your opinion.

seeker Fri 12-Apr-13 20:11:31

You won't be repeating yourself.

And you are not within your rights to say things that may put people off registering as a donor without explaining why. That is the action of an irresponsible fool. And surely you don't want people to think that you're an irresponsible fool, do you?

Honsandrevels Fri 12-Apr-13 20:12:14

I always feel I should post on these threads being a recipient because there is so much bollocks along the line of 'my mil's bin man's sister knew someone who was killed off because they were on the list' etc. It is disrespectful to posters who have made a difficult decision to let their loved ones organs be donated and just perpetuates myths about organ donation.

People on this thread are alive because of the generosity of others.

MsBella Fri 12-Apr-13 20:13:20

Scroll up to see what I said then...

seeker Fri 12-Apr-13 20:14:06

Please tell me you didn't suddenly start speaking in a French accent, honsandrebels........

Honsandrevels Fri 12-Apr-13 20:16:00

Seeker Oddly enough, I didn't.

MsBella Fri 12-Apr-13 20:16:33

Its always good to open your mind and see all sides of things its the best way to form an opinion

herethereandeverywhere Fri 12-Apr-13 20:17:26

I logged on to this thread to say that try as I might, the online registration form crashes every time I try to complete it! I've been putting off learning to drive so perhaps getting on the register is the motivation I need!

A dear friend's sister (in her 20s) is on her second donated liver. I cannot express how grateful she and her family are for the second and third chance she has been given. It is a wonderful gift and all the more awe-inspiring due to the incredible science and skill behind the process, in addition to the selfless gesture.

I am agog at the "personality transplant" assertion. But then perhaps the world is flat and the moon is made of cheese wink

crashdoll Fri 12-Apr-13 20:28:20

I'd love to see the other side of things but I haven't even been pointed in any direction.

seeker Fri 12-Apr-13 20:29:42

"Its always good to open your mind and see all sides of things its the best way to form an opinion"

So show me your side!

MsBella Fri 12-Apr-13 20:33:07

Its not MY side!

seeker Fri 12-Apr-13 20:35:22

Ok- show me the side you brought to this thread, then.

Pickles101 Fri 12-Apr-13 20:35:26

Oh for FFS. Alright, I'll bite. What is it then!?

We don't know what the "other" side is because you keep not telling us. Veiled hints and mysterious non-references don't make you sound clever.

Pickles101 Fri 12-Apr-13 20:37:21

No but they do make her sound like a massive twat. Maybe that's what she was going for

MsBella Fri 12-Apr-13 20:38:45

I'm not trying to sound clever, what a negetive view
And jesus christ I'm not the fucking expert on this, along my life I've learnt things, go and do a bit of googling, or read what I've said in the thread...

Honsandrevels Fri 12-Apr-13 20:40:29

MsBella Clearly you are not an expert!

MsBella Fri 12-Apr-13 20:42:12

Like I said...
I never claimed to be.
Just as none of you are claiming to be but you still think you're more entitled to your views than someone who may or may not agree but also accepts other views that she's been taught about
I mean ffs

crashdoll Fri 12-Apr-13 20:48:47

You're talking crap and stating it as fact.

LadyBeagleEyes Fri 12-Apr-13 20:48:57

Ffs indeed MsBella.
Why come on a thread airing frankly ridiculous views if you can't show any evidence.
Oh, and I'm kind of glad you don't believe in organ donation, because if your theories are true someone might end thinking like you.

MsBella Fri 12-Apr-13 20:53:22

Excuse me I NEVER said I didn't believe in organ donation ffs why twist my words? Or actually make things up.. thts not even twisting words it is literally making shit up. All I have said is: all cells are concious, there have been caseswhere people got personality traits from donated oragsns,and that I'm not on the donor register (even stated something could make me change my life) and that it can be hard for people who are grieving to say yes to their loved ones body being tampered with instead of letting the body rest, and that there are spiritual views about the body and death which would make people not agree with this, and that it is a personal choice.

So before you start lying about what I've said READ THE THREAD??!

Sirzy Fri 12-Apr-13 20:56:37

So where are these cases where people have had personality changes? And do they all see that as a bad thing and would rather be dead?

Would you say no to a transplant if you or a loved one needed it?

MiniTheMinx Fri 12-Apr-13 21:03:11

I think sometimes when a certain view or position becomes the consensus view, all other challenging ideas are seen as inferior. There is certain cultural hegemony, where you can question things within a certain framework but you can't actually question the consensus.

I don't know. My main concern is the fact that some hospitals have "sold" organs to foreign private patients. That is just wrong because it sets the precedence for a market in donating body parts. Where eventually it may be too costly to save your life with NHS funds but very profitable to sell your donated liver/lungs etc, privately funded patients. That's not to say this will happen but this time last year no one thought they were eating horse, a few years ago no one thought the NHS could ever be privatised and that welfare would be assessed by huge american and french private businesses finding people who can barely function fit for work.

Unless the registration allows you to make specific provisions about how your donated body parts are used, can you be sure that you would be happy with the how they are used? if I thought I might save a child's life, I might be tempted but I am not tempted to save the life of some private patient just because they had the money to pay.

unfitmother Fri 12-Apr-13 21:29:10

From the NHSBT website here

How are kidneys shared locally and nationally?
The national allocation scheme uses a computerised protocol to allocate a particular kidney to an individual patient primarily based on blood group, degree of tissue matching and time spent on the waiting list. Under this scheme, all patients across the country are treated as fairly as possible, although children are given some priority. The local schemes in operation across the country vary slightly from area to area but tend to use very similar protocols to allocate the kidney to a local recipient. Whenever a pair of kidneys is retrieved from a donor, the allocation process usually results in one kidney being used locally and one nationally. The exception to this is if there are two very well matched recipients elsewhere in the country and none locally, in which case both kidneys are used at national level. UK Transplant is reviewing the current national allocation scheme and the protocol may change within the next year.

unfitmother Fri 12-Apr-13 21:31:31

More facts, no fiction, sorry.

Binkybix Fri 12-Apr-13 21:40:36

I did used to be a scientist in immunology and some transplantation stuff and think you are talking utter rubbish.

I would however be open to reading/looking at your evidence, IF YOU WOULD CARE to show it. Pls don't do your usual MO by telling me to re-read what you have already posted, because that is a view, not evidence.

That's what having an open mind means, surely, not just having to accept everything someone says as true because they say so.

ariane5 Fri 12-Apr-13 21:49:40

I have lurked on this thread (and other similar ones) and really want some guidance as I really struggle with even thinking about organ donation.

I have always said no I couldn't do it, I think because I have a fear of death/the unknown but dh is very very pro organ donation.

I struggle terribly with the thought of putting dcs on the register as it means thinking about them no longer being here sad
I know this makes me sound like a hypocrite but I know I would accept an organ if needed without a second thought and that does make me feel bad.
I know I am rambling and probably sound stupid but I REALLY want to be able to do it, I would hate to think of somebody passing away just because I couldn't let go of something that was already gone anyway.I feel selfish that we are not all on the register but I just hate to think of dcs not being here.

Goodness I probably sound idiotic. Think I just need that final push. My fear of even thinking about losing dcs is clouding things. Even posting this makes me want to cry-how stupid am I?

EmmaBemma Fri 12-Apr-13 22:01:55

"all cells are concious"

How are cells conscious? I'm interested - am a cell biology student so would love to know about this massive area of the subject that has so far passed me by. Please explain!

SuburbanRhonda Fri 12-Apr-13 22:02:02

Interesting article from The Guardian about the government considering laws which will prevent families overriding patients' wishes to be an organ donor:

xigris Fri 12-Apr-13 22:04:21

Ariane no, you're not stupid in the slightest. I am massively pro organ donation and have looked after many donors and their brave, generous families. I'm on the ODR (Organ Donor Register) as are most members of my family. My children are not. I'll let them decide when they're old enough to understand. If (God forbid) it comes to that kind of decision, then DH and I are their next of kin, so it'll be our choice. I too can't think about it without getting emotional. I'd really suggest that you have a look at the NHSBT website (sorry, am crap with technology, can't do links). There's loads of info there which may give you some insight. Good for you for even thinking about it smile

TheYoniOfYawn Fri 12-Apr-13 22:07:06

Ariane, it might help to hear things from the other side. My godson had a transplant a few years ago, shortly after his first birthday. During the months that he was on the register, we watched as he was slowly dying. He got iller and weaker, and at one point he was taken off the waiting list because he was too weak to survive surgery. He was called into the hospital 3 times for organs that turned out not to be suitable for him, but which were transplanted into sick adults instead. Ad his condition deteriorated, a relative volunteered to give part if his liver, and this went ahead successfully. But every Christmas, every birthday, on his first day at preschool, his first school play and all those other milestones, we think of those donors who might have been able to give him a new liver. And we think of their loved ones who aren't there to share those special moments with their loved ones, and we are so, so grateful that thanks to them, other families aren't experiencing that grief. And that's how we feel from not having had an organ from someone who died, so I imagine the feelings must be even stronger where that is the case.

So think of it this way: for every.person who loved the donor. there will two or three or more people who will think of them with love and gratitude for the rest of their lives.

EmmaBemma Fri 12-Apr-13 22:11:18

As to the topic at hand, I am against an opt-out system. Spain, I believe, has the highest transplant rate in Europe (possibly the world, I can't remember) and although they do have an opt-out system they also allow the family to override it, as is the case in the UK with opt-in donors. However they credit their high donation rate to their sensitive transplant co-ordination teams, rather than the opt-out system itself.

I would broadly be in principle be in favour of a system which stops the family overriding the wishes of the potential donor, but then I also can't imagine the horror and pain of being at the bedside of someone - my daughter, my husband, my mother - on life support, very suddenly, possibly having seen them fit and well not hours before, and who I would move heaven and earth to keep them alive if I could. As irrational as it seems, I can understand how in that situation, giving your consent for donation could mean facing up to a reality you can't bear.

I think the term "harvesting" is repellent when applied to organs and probably putting people off - especially relatives.

I also think there is no way on earth the state can morally assume ownership of a dead person's organs without the owner's or the owner's representative's consent. BUT owner's wishes SHOULD take precedence over their surviving relatives, within the law. Else why do we both with wills?

Speaking personally, I am donating every last organ and don't understand why other people would feel differently - but that is up to them.

GoshAnneGorilla Fri 12-Apr-13 23:17:57

Right. I have googled.

It would appear that some people believe there is such thing as "cellular memory", there have even been studies into whether it exists. None of the studies appear to have been at all conclusive and seem to rely more on anecdotes, rather then actual scientific proof of how cellular memory works.

Links here:

But I think I would like to let this man who received a heart transplant have the final word:

ReindeerBollocks Fri 12-Apr-13 23:28:02

Not sure if this has been covered but there has been many debates about whether a person is dead and the harvesting of organs.

Quite often a person is brain stem dead, but their bodies are able to keep functioning due to respiratory machines used. But for all intents and purposes they are dead. There is no coming back and no medical treatments that can help. The organs aren't harvested, but the body is left functioning so that loved ones can say their goodbyes and they tend to operate as soon as the family give the go-ahead.

It's not nice. It's not an easy subject to debate either, because death by its very nature is scary and unsettling. However, so is being on the transplant list facing death.

I completely believe that everyone has a right to refuse anything to do with organ donation - they won't donate but they won't receive either. I do have an issue with those who won't discuss donating their organs but will happily accept an organ.

Plus3 Sat 13-Apr-13 00:18:50

I am on the register - both organ & Anthony Nolan. I am a nurse who works in a paediatric intensive care unit & have cared for so many families who have been waiting for an organ. Some have been unbelievably lucky, whereas more have watched their beautiful children die waiting.

Please please think about this decision before you have to make it. It is emotive and it is difficult. I have only ever seen the transplant teams work with the utmost respect.

xigris Sat 13-Apr-13 07:34:34

Emma you're right about Spain. They are the gold standard in terms of organ donation rates and it's their model of having Specialist Nurses in Organ Donation based in hospitals that we're now following in the UK. Hopefully this will lead to an increase in donation rates in this country through more education and promotion.
Smethwick I totally agree with you about the awful term 'harvesting'. It is now referred to as 'retrieval' or just donation.

3littlefrogs Sat 13-Apr-13 10:08:17

Sorry I used the term "harvesting". I do not work in the field, and, being quite old, didn't realise it was no longer used.

Solopower1 Sat 13-Apr-13 10:14:52

Brilliant posts, Mini - you say exactly what I think (pages 6 and 7, I think). I am also concerned about how a privatised health care system will exploit people's altruism. Someone very early on said that a surgeon might earn herself £20,000 for selling an organ to a private patient (unless I misunderstood that).

And thank you to everyone for the factual information on here. I really appreciate it.

When my mother in law died, my son (aged 12) was so impressed by what his granny had done in donating her organs, that he told all his friends and immediately decided that was what he wanted to do too. He and his father were treated with enormous compassion by the hospital and they were asked detailed questions: which organs to donate and so on. My son was part of this.

All the kids in his class were given donor cards to fill in and as soon as he turned 16 he sent his off.

I hated the idea. Huge emotional reaction on my part (my brother died at 17 and my son's decision triggered something in me). However, I have now come round to it - very much reassured by some of the posters on here.

I don't want an opt-out system, though, for the reasons expressed by other posters. I'm afraid I don't trust the medics now that the NHS is being privatised.

As far as I am concerned, I am not on the register, but have told my kids I would like my organs donated. As I get older, this decision gets easier to take. However, I would not want to receive a transplant if I was over 70. I have grandchildren and passionately want to live to see them grow up, but not if I have to rely on medical science to keep me alive. I am hugely grateful for all the scientific advances that have been made, but think that on an over-crowded planet resources have to be rationed. If it's either the young (one-child policy, anyone?) or the old who have to go, then it should imo be the old.

Pickles101 Sat 13-Apr-13 10:43:25

Some opinions on this thread are sick.

xigris Sat 13-Apr-13 10:54:56

Not your fault 3pigs!
Solo sad for your Mum. What an amazing gift she gave to so many people. The most important thing you can do is let your family know your wishes.

Solopower1 Sat 13-Apr-13 11:18:21

Xigris - thanks for the info you have posted. Yes, we were all very proud of my mil, especially my son, as I said. And I have told them.

ThreadPirateFanjoBeard Sat 13-Apr-13 18:08:22

Yes. What use are my organs to me when I'm dead?

countrykitten Sat 13-Apr-13 18:50:48

Moved and appalled by this thread in equal measure.

How wonderful are those posters who have stood by the wishes of their loved ones and have allowed the donation of organs to help others in distress or dire need. Lemonylemon your posts brought tears to my eyes.

And how marvellous that so many on MN are signed up on the register - it is heart warming.

Not so wonderful are the ridiculous posts of MsBella and earlier one post by Stuntgirl who are both scaremongering which can put people off donating which could then have a knock on effect on those who are in dire need of organs. How could you? How dare you? On MN which is so widely read and used? Thankfully posters on this thread have their heads screwed on but how many lurkers are there who now have doubts because of the nonsense you have posted? Idiotic and irresponsible. I also find a lot of what mini has posted to be pretty awful as regards the elderly and also scaremongering about selling organs overseas.

MelodyBaker Sun 14-Apr-13 08:14:23

I am on the Register - have been for 15 years. I used to donate blood. When I am dead I won't need my organs - I want to help people who need them

PottedPlant Sun 14-Apr-13 13:51:33

Message withdrawn at poster's request.

Fayrazzled Sun 14-Apr-13 14:21:33

country kitten, I think you are being hugely unfair. Those posters have expressed their own reservations about joining the register. They haven't said other people should do differently. Everyone can make their own choice (which is why I agree with an opt in rather than opt out scheme). But people are entitled to ask questions; it is a difficult and complex subject. Those questions are legitimate and it is not the responsibility of those who have questions to put off asking them for fear it will put people off donating. The whole process should be clear and transparent.

Fayrazzled Sun 14-Apr-13 14:26:19

Just to add I don't think MsBella has articulated her misgivings very well, and she clearly doesn't have the science she claims to have to support her argument, but I don't think it does to mock people who do have misgivings or questions they would like answered.

Pickles101 Sun 14-Apr-13 14:38:56

I think what upset me people was that no questions were asked, rather, other bullshit opinions were shoved down people's throats and no explanation or alternative information could be provided to back it up, just opinion.

It would appear MsBella has a penchant for being controversial (mentioned by another poster upthread).

I don't see anything wrong with countrykitten 's post.

Pickles101 Sun 14-Apr-13 14:51:36

I used to be terrified of donating. I used to think if I signed up and was in an accident a doctor would top me off to save someone else. There's an NHS webpage somewhere that for the life of me I can't find that explains how irrational that fear is. After reading that, I realised how illogical my fear was and got over it pretty quickly, became very passionate about organ donation and signed up. I was always aware that other people had different opinions and right to their own opinions, though.

Then my OH got sick. And now I get very upset when other people can't move from their illogical fears too - for the sake of others who are (rich or poor, black or white) very sick and in need of organs that would otherwise go to waste. Except they won't get those organs. Because someone, somewhere decided their fears or beliefs or opinions were more rational than the loss of someone else's life.

And what gets me most upset is my OH, the one who actually needs the liver, is so much more accommodating of other people's beliefs than I am. If I were him I'd be screaming, every day, in fear. But he has this amazing ability to accept someone like MsBella's opinion, or mini's and not to take them personally. But I can't. Because I know if they didn't think like that, maybe 5, 10, 15 members of their family might also be persuaded to consider organ donation. And 5, 10, 15 more people thanks to each of those family members. And so on.

And shit. I just had a fucking heart to heart with an AIBU post.

Slinks away from thread quietly

countrykitten Sun 14-Apr-13 15:41:08

Fayrazzled where have I mocked anyone? I am afraid that uninformed posts such as those by msbella make me angry and sad as her 'views' can infect so many and they are nonsense.

Pickles I hope that a liver can be found for your OH soon. It is posts like yours that others should read to understand what being on the register can mean to others and how important it is that we sign up.

<<checks to see if it's safe to return>>

I have to agree that MsBella's contributions were spectacularly unhelpful, I don't know it that was her intent or as Pickles said it was just her penchant for being controversial but her ability to attempt to argue that black is white drove me from this thread as I did not wish to prolong her

I remember waiting for my BIL's transplant, you don't wish anyone any harm but you just hope that if something terrible has happened to someone then that some good can come of that awful situation.

I wish you and your DH all the best Pickles smile

thanks to all donor's families.

eyestightshut Sun 14-Apr-13 23:10:16

With regards to the whole concept of selling organs to private patients within the UK- 'tis a load of claptrap.
Organs which are donated have to be matched to a recipient to ensure best use of the organ (ie best match in terms of blood group/tissue type, height and weight) to ensure the best possible outcome for the donor organ. All of the donor and recipient teams are mindful of the fact that someone has died, and their loved ones have made a very difficult decision to donate organs. We want to be able to give a good outcome to everyone - to the patient who has received the organ - restoration of good health. To the family of the person who has donated, news of a good outcome, and some comfort in the knowledge that their loved one's death has transformed the lives of so many people.
My backround is within recipient heart lung transplantation, so I will use that as the example.
Within the UK there are 6 adult heart/lung transplant centres (Papworth, Harefield, Birmingham, Manchester and Glasgow). Each centre has their own on call team to collect donated organs. Each of these centres can put forward one urgent candidate (ie will die if they don't recieve a heart within a v short time frame)
If a heart is donated, it is first offered to the urgent list.
If the heart isn't suitable, it is offered to the centre that retrieved it for donation.
If no-one on that centre's list of potential recipients is a match it is then offered to the other UK centres.
The UK has a reciprocal agreement with Europe. Therefore in the unlikely event that an organ is unsuitable for anyone on the UK waiting list, it is offered to Eurotransplant (who coordinate for the whole of Europe - which also means that we receive organs from outside the UK).
If the organ is unsuitable for anyone on the Eurotransplant register, then it is offered to patients on the private waiting list. NO money changes hands. What the private patient pays for is the cost of the surgery and their post op treatment - not the organ.

dementedmom Mon 15-Apr-13 00:10:19

Just wanted to say, after reading the whole thread, certain comments haven't in the slightest put me off. I was more iffy about it beforehand, but this thread inspired me so I have just signed up! So thank you all.

reneaa2 Mon 15-Apr-13 01:28:22

I'm not.

For the simple reason that I don't want to make decisions about me being dead. I'm sorry for feeling this way. I also wouldn't prepay for a funeral. I could never make an active decision like this. I wouldn't care if it was the default option.

I would most likely agree to family members body parts being donated after they are dead. Can't say for certain, but I think I would.

I also have fears about my body parts (or my loved ones body parts) extending the lives of people who could harm others. i can imgine the situation where my heart is in a person who murders or rapes a child. if they didnt have my heart they would be dead, so in a way i would have some if this blame. Irrational, selfish, ignorant? Maybe but it is a genuine fear of mine.

Btw I would never tell others these reason in real life as I know they would be ridiculed, so I am sharing them anonymously so you can be aware of why some people don't wish to register.

Binkybix Mon 15-Apr-13 08:39:03

Fayrazzled - I think there's a difference to asking questions, or expressing your own fears without stating things as FACT and then refusing to back them up, apart from claiming to have known people who have studied science.

Same as per Mini's post re sale of organs - there was an excellent post further up which set out the protocol for allocation of organs, which was either ignored or disregarded.

LondonJax Mon 15-Apr-13 20:58:55

I've been on the donor register for 30 odd years. I've told all my family that it's my wish that doctors take whatever they need. I think DH is scared I'd come back and haunt him (apparently I'm scary enough in the flesh wink.

It became more personal when our DS was born six years ago. He has a congenital heart condition. If he needed a transplant in the future I'd be banging on everyone's door to get it for him so how could I deny another person's loved one that?

As for the idea of cellular memory. Fantastic! The world would be a better place if there were more of me around in my opinion grin

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