I’ve withdrawn from organ donation register

[Purpledogcollar]

I give blood and have always been very pro organ donation.

Sadly I have just withdrawn as protest against reproductive organ donation. I can’t support it and am very conflicted as would like to donate other organs.

What are your views and is it a hasty decision (although not sure I would change my mind).

It's one thing to say I missed everything about the consultation and another to claim the government sneakily changed things. It was all over social media, spoken about on mainstream media and in the press and for a fair amount of time.

You might consider including your wishes about womb transplant within an advanced directive or advanced decision to refuse treatment (ADRT) / Living Will document, which is legally binding when done correctly. It will also ensure your family can be clear about what your wishes are.

Whilst Advanced Directives are usually for decisions relating to refusing treatment in the future when/if you have lost capacity, including specific wishes about organ donation should that be viable in the event of your death keeps it all in one place.

Everybody should have these conversations with their family about their wishes and plan for these future scenarios.

1. you can specify which organs you are happy to donate/not donate
2. I assume you will also refuse to accept a donated organ should you need one

If my organs can help improve people's lives after I am dead they are welcome to them. That includes my uterus. I can't really see the link between concerns about live organ donation raised by the recent story of a uterine transplant and organ donation after death. As such I'm not sure about the rationale for removing oneself from the organ donor register.

I think that we need to make sure that any safeguards are robust for live organ donation and any issues are made public and can clearly be demonstrated that they have been learned from publicly. But, the idea that uteruses are a special case or that somehow the ethical issues that exist around live organ donation are just now a major issue is an odd argument. Most commentators seem to be taking umbrage at the nature of the media coverage and are just reacting against that by raising a range of arguments that are well worn and seem to be based on a misunderstanding of how things work in the UK. For example Sonia Sodha's article in the Guardian suggests that we are leaving live organ donation to "the medical professionals" when that is not the case and many non-medical people are involved in the work of the HTA and and also that it is somehow the Human Tissue Authority's role to find and stop illegal and illicit organ trafficking activity and that as this still occurs they are not fit for purpose when that is the role of the police, not a regulatory and oversight body.

That is not to say that I think system is perfect, as I really don't know, but criticism should be based on reality not what someone thinks is the case.

Anyone who's arguing "they might change the rules without me noticing so I'll opt out now to avoid having to pay attention to this stuff in the future". If you feel so strongly about this that you are literally opting out right now, then you will be actively monitoring the situation for years to come for any possible tiny hints at developments and progress and changes, and you will enjoy doing so. How could an update to the rules around uterus donation possibly pass you by?

I'm an organ donor — have always been, will always be.

In my ideal world, however, the donor's next-of-kin are given a sheet with the potential recipient's full name, summarised background, medical history, and criminal background. They're given maybe 30 minutes to an hour to decide, and they're allowed to veto the donation if they want.

I have no qualms with donating my organs to regular, good folk. I do believe though that not everyone deserves a second shot at life. Not from me at least.

This ^

Once the decision was made (after much consultation) this publicity campaign was launched. I got one of these leaflets through my door. I can't remember if it arrived through the mail or through door to door delivery. But the message was out there.

https://www.nhsbt.nhs.uk/news/pass-it-on-campaign/

I don't share your views OP anyway, but I think you're being ridiculous when womb transplants are still in the very early stages and are likely to be only given to women for the foreseeable seeing as the difficulties in giving them to men must be pretty complex, if not impossible to achieve.

Also at least one poster has posted info explaining that the usual consent to organ donation does not include the uterus at the moment (along with some other organs) anyway.

By all means discuss your views but why make a statement / decision like this meaning no one will benefit from any of your body parts. I hope none of your friends or family never require organ donation.

I feel the same about people being petty about the change to opt out too. So it was fine to opt to donate because you think it is a valid thing to do, but not when you are required to opt out rather than in, even though you were still making the same choice to donate or not?

I actually held off "opting in" out of a stupid feeling it would herald some awful fate for me in the near future if I did, whereas glady didn't opt out when it changed.

@XDownwiththissortofthingX

As it stands, Advance Directive is quite literally my only means to have this choice made known, and even then, there is no legal compulsion for doctors to actually respect it, as they could argue about the ethics of non-treatment after the fact. Also, it's highly unlikely it would even be looked at in an emergency room triage scenario.

An Advanced Directive is legally binding when recorded correctly. If you are making an advanced decision to refuse specific life sustaining treatment in the future you need to be specific and include a statement such as ‘even if my life is at risk.’ It must also be witnessed and signed/dated by that witness.

As for letting people know, it’s important family and friends are aware of your wishes and that you have an Advanced Directive in place. Some people carry it around with them. Some have a medi-alert bracelet. Some may have had previous conversations with hospital doctors and it may be able to be added to your patient file. If there is an indication an Advanced Directive exists they have to first access it, consider if it is valid and if it is they are legally bound to follow it.

To be valid…..the situation you are in needs to be reasonably believed to be included in your statements (hence why the more specific you are the better), you must not have capacity now (because an advanced directive only becomes valid when you do not have the capacity to make decisions regarding your care) and, if you are refusing life sustaining treatment, it must contain the statement I mentioned above and by signed/dated by you and a witness.

Firstly why should the recipient's personal history have to be given to complete strangers in order to justify then getting a life saving organ? If you get all of my information because you're considering donating a kidney, do I get all of your information so I can see who denied me a life saving transplant because they didn't like the look of my history compared to someone else's? If not, why is it ok for you to get one person's information and not them have yours?

And once we get past the absolute GDPR nightmare of information sharing there won't be just one potential recipient, there will be up to nine (depending on the organs you've agreed to donate) and there won't just be one person per organ, there will be many different people who are potential matches which is why the decision will be made as to who the best recipient is based on medical need not on any other criteria ... What if two recipients are identical in need

The whole point of the NHS is that everyone is treated regardless of who you are based on clinical need, not based on who has the best sob story or the deepest pockets.

Actually @saraclara that campaign was launched because only 37% of people picked up the law was due to change. As such the initial advertising can’t have been that comprehensive can it?

I didn’t get that leaflet fyi…

One tendon (a type of tissue donation) can be divided up to help up to six people. It is not a one for one type of a deal like with organs.

AD has never been tested in Scottish Courts, so while it's generally expected that doctors take heed of them, there is no precedent for what would happen if an AD is completely ignored and someone is determined to follow that up.

To say they are 'legally binding' isn't accurate.

I actually think it’s perfectly reasonable to not want to be responsible for extending the life of a rapist, murderer or sex offender….

My reasoning is that donating an organ is a very personal gift and I believe that I should know who the gift is going to. The thought of my organs being given to a rapist, sexual predator, domestic abuser etc makes my skin crawl. I just don't think they deserve it. Surely you'd value your life being saved than your personal information being given to someone else?

What do you mean they didn’t tell you? It was debated in parliament, it was on the news, there were TV ads… if you remain wilfully ignorant of something until someone says the magic word “trans” that’s not the government’s fault

That was the official government campaign. The 37% referred to were those who knew about it through watching the news or reading the media.

My point being though that 37% is a very small population number so the news can’t have been that wide.

the leaflet, whilst clear and a good idea etc was also ineffective as I never got one. It was not a topic discussed amongst my family, peer group or work colleagues. I only found out because of threads at the time on mumsnet so clearly there were gaps in the campaign which led to some people not being aware of the law change and thus feeling “done to” by the government

Apologies. I didn’t realise you were in Scotland.

In England and Wales advanced decision making is included within the Mental Capacity Act, thus if an AD complies with the requirements of the Mental Capacity Act it must be followed and would be afforded the same legal status as treatment refusal by patients with capacity. If medical professionals do not follow it they could face criminal prosecution or civil liability.

In Scotland it would be the Adults with Incapacity (Scotland) Act that provides the legal framework for ADs.

But yes, it would require you or someone acting on your behalf to report it, much like most crimes.

This thread is so depressing. It's made me realise the level of ignorance and people's unawareness of what's happening around them.

I'm stunned that so many people here are showing such ignorance and making themselves look like fools. This campaign was absolutely bloody everywhere, and the consultation in the news for ages. Where the hell were all these people?

37% awareness is pitiful. That level is truly pitiful. The ignorance is on you, not us. The fact is there was little discussion and little in the media. This is quite clear.

Also, I say again, how many were consulted, and how long did this period of consultation last for?

It is not us that are looking like fools...

Perhaps though, there are more recent events that have crystalized this, such as the womb transplant between two living people?

These things are shifting all the time. I didn't know much about tissue donation until I became a recipient. Now it's something I would do, but I don't want to do organ donation myself (and the chances are much slimmer).

These things are evolving public conversations.

the news can’t have been that wide.

The news is the news. Its national. It's on TV and the radio available to all.

And actually, 37% is quite a lot, measured before the campaign had even started.

“Quite a lot” 😂

@saraclara if you were only paid 37% of your salary would you still consider it quite a lot?

the fact is there were failings which led to wide spread disquiet about the campaign. And the numbers were even smaller for certain age demographics and ethnic minorities according to the link you provided.

if I read something in the news and therefore have knowledge you don’t, it doesn’t make me superior to you or you a fool. Denigrating people for not having such comprehensive knowledge around this campaign does not make you better or more intelligent than other people.

and repeatedly referring to people as fools is rude, unnecessary and does not make you look good