To ask you not to leave it until it's too late.....

[KnappShappey]

to discuss organ donation with your family and next of kin.

New statistics released today show that organ donation has dropped by 5% for the first time in 10 years.....

Only 58% of families allowed organ donation to go ahead despite the wishes of their loved ones.

Don't leave it to your family to struggle with the decision once you have gone, discuss it today........

You can register online and share your decision on Facebook to raise awareness amongst friends.

[LibrariesGaveUsPower]

On another thread someone said that you can formally change your next of kin linerunner. I think it's a massive issue if you want your e.g husband to take all decisions except that one.

[ZadokTheBeast]

Libraries Sorry, I must have misunderstood. I thought you were saying the if medical staff were able to say to the relative that the deceased had re-afffirmed their wishes, e.g. 7 times, that would justify the decision being taken away from them.
Also, if we introduce a system where consent expires - well, people are lazy, and I think that would just lead to a fall in the numbers on the register, therfore more rather than less uncertainty about an individual's wishes. For example, if someone hadn't renewed, would we then take it they had expressly said they didn't want to be a donor? As it stands, registration gives an indication of the deceased wishes, and although that's not binding, it does stand until and unless the individual removes themselves from the register.
I totally understand what you're saying and you're right, why should your wishes not be respected after you're dead? But no hospital is going to wheel you away if your nearest and dearest are wailing and screaming and insisting no. And while it might not happen in too many cases, it would happen in enough to put people off.

[LibrariesGaveUsPower]

On the expiry- couldn't an expired consent just be treated the same as current non binding register?

DH will donate all of me. But I am . furious that bodily autonomy is so easily ignored for someone's opinion who has no weight.

I feel equally strongly that it is wrong I could donate my DH ' S organs even though it was clear he didn't want it (he does- but as a hypothetical ).

[KnappShappey]

OccamsLadyshave I believe that you can still register if you have been clear for a year. I'm not sure that you would be a run of the mill case but some organs are not affected (corneas maybe?)

The use of marginal organs is also increasing, so that someone who is less likely to receive and organ (e.g. elderly or other unrelated health issues) can make the choice to receive and organ with an increased risk of cancer or a potentially shorter life span rather than not surviving or staying on dialysis or life support.

[LineRunner]

Libraries, 'next of kin' is very nebulous in the UK if you're not married, I reckon. (I'm not.) It seems like any wailing relative can override my bodily autonomy once I've snuffed it. Bizarre.

[OccamsLadyshave]

Thanks Knapp.

I've just signed up here.

Of course I'll never know in the event whether anything could be used, but I will make sure my parents and DD know my wishes.

[KnappShappey]

Thank you OccamsLadyshave

I felt so down about that fact that so many people must be signing up but not making their families aware of their decision and therefore making the decision a terrible choice to make at a terrible time.

If we can get a few more people to discuss their decision (either way) with their families then it may ease some of the burden on the NOK at a difficult time and save lives.....

[Pseudonym99]

It would also be quite easy for a relative to deem your organs unsuitable for donation, by refusing to answer lifestyle and medical questions, or by giving false information. In order for you to donate, your relatives have to co-operate. Even in Wales when deemed consent comes in.

[inamaymaybewrong]

Not read all the thread but I live in Wales where a recent change means we have opt-out not opt-in re: organ donation. I was always registered to donate and won't be opting out now.

[vvviola]

Today 22:12 ZadokTheBeast

vvviola Spain has an opt-out system.

Ah, does it? I had a vague feeling there might be one but my studies are a bit hazy now - it was a few years back. I had thought Iran too, I know we definitely focused on something to do with the Iranian system.

I really do need to review my notes, half-remembered stuff drives me mad.

[PtolemysNeedle]

But I am . furious that bodily autonomy is so easily ignored for someone's opinion who has no weight.

Really? You think that the feelings of a husband/wife/parent/daughter who has just been told that their loved one has died has no weight?

The threads on this subject recently have really surprised me by showing so many people that don't seem to care about their relatives will feel when they die.

I'd much rather my almost dead body was in control of people who love me instead of being under the control of government legislation and doctors who don't know me or my family from Adam.

[LineRunner]

Ptolemy, my fear is that relatives who are toxic will overrule my wishes and bodily autonomy when I die.

[Pseudonym99]

I suppose ideally, you wouldn't have toxic relatives there to make decisions. In an ideal world, relatives would respect and be able to deal with a prior decision made by a donor. But also, a donor would respect a relative who couldn't bear their loved one to be a donor. But it is not the place of medical staff to mediate in that situation.

[PtolemysNeedle]

I can understand that LineRunner. There has to be a way of preventing that though. Maybe we could register the people we want to be able to advocate for us as the same time as we opt in?

[Pseudonym99]

nhsbtdbe.blob.core.windows.net/umbraco-assets/1050/appointing-a-representative.pdf

[ThumbWitchesAbroad]

I was registered in the UK, but no longer because of the CJD "risk".

Linerunner - could you apopint someone as your official next of kin who will acquiesce to your wishes? My Dad is official/legal NOK for a friend of his, who has no one else. That would get round your toxic problem.

I heard recently of a woman in need of a BMT, who was found a perfect match on the BM register - but the donor then refused to donate stem cells. I don't know why they refused, but if it was for any other reason than their own ill health, I'm horrified. So please think long and hard about whether or not you would actually be prepared to go through with a BM harvest before you register, because to find a match and then have that hope dashed by the "donor" refusing, must be worse than not finding one at all. :(

[Pseudonym99]

How to appoint someone to make a decision on your behalf after you have died

[Mermaidhair]

For all of the people saying they don't understand why somebody would not donate, or go against someone's wishes, have you ever been in that situation? You do not know how or what you would do if it happened to you. I think families say no as they don't want their precious loved one looked at like a piece of meat that can be chopped up and used as needed. The families are the ones that will be the ones dealing with the aftermath of the situation. The families also have an understanding of the situation, especially when their loved one is obviously unconscious and near death. There is a reason that these are the laws.

[Mermaidhair]

I haven't been in that situation, but it is a different perspective to look at.

[Mermaidhair]

I have just read a post where it says that family should not be considered selfish by choosing to allow their loved one die surrounded by family, instead of a cold operating theatre. I completely agree, it is awful for people to call them selfish. They are suffering horribly, but some how they are selfish? Please remember the organs are coming from an actual person.

[LineRunner]

Thanks for the info and links above - very useful.

When I was very ill a couple of years ago, I was really pissed off at the people the ward staff allowed to just rock up to my bedside against my wishes. It made a horrible experience even more stressful. I dread that becoming my 'death bed' scenario, so yes I would to be able to nominate people who are absolutely NOT allowed to be there or to contradict my registered, recorded wishes.

I don't expect anyone to mediate as such - I want to be able to give them clear legal instructions to follow, which would protect the staff not hinder them.

Interesting discussion.

[LineRunner]

I would LIKE to be able to nominate...

[triplets]

In 1994 my beautiful 14 yr old son collapsed and died instantly in my garden. To this day we have no medical explanation. They performed a post mortem the following day and the coroners officer came to tell me the result, inconclusive. I remember immediately asking if we could donate any of Matthews organs as very strangely it was something Matthew and I had talked about. As a result they were only able to use both corneas because of time delay. I rec`d a letter telling me that one had gone to an 8 yr old girl and one to a young man. It still comforts me to know that somewhere he lives on. xx

[KnappShappey]

triplets how awful to have such a sudden shock and still not answer. I am so glad that you had discussed it with him and were able to get some comfort from knowing what a difference he had made to two other people (and their families) lives.

This is why I think that whatever people and the nation as a whole believe about donation, opt out, overriding etc it is so important to discuss it...... Your experience and the amazing gift that Matthew was able to give should be celebrated and publicised to encourage more people to think about donation..... whatever they decide at least they might have really though about it.

[ThumbWitchesAbroad]

Oh goodness Triplets how horrifying and tragic! for you but so glad that some of him is still helping other people.