Organ donation law in England is changing

This may seem to be a contentious issues but one I feel needs to be addressed.

With the organ opt-out scheme soon to be introduced in England on the 20th May. I think (like me), many people will welcome this scheme. I for one will be eternally grateful to my liver donor for saving my life, but with all the hype and publicity of this change. One thing intrigued me.

I could foresee an influx of available organs, in fact there can be cases where we have more organs available, than available surgeons and nursing staff to use them. This would mean a lot of organs not being used once harvest.

There is no mention on the NHS Blood and Transplant website as to what becomes of the unused organs. I have contacted NHS Blood and Transplant service, and they themselves are unclear, but they suspect that the unused organs would go towards medical research. I have explained that I feel that more clarity is needed in order for family members to decide if they wish for any unused organs for transplant, may be used to educate medical students instead.

Especially if their love ones organs aren't used. Otherwise, people will think their loved one has saved someone else's life when in fact they've been used by students instead.

I have asked if this could be made clearer on their website.

If anything, this should raise an interesting debate.

[Hidden]

🤔👍

[Bootandall]

But isn't educating medical students indirectly still saving someone's life?

[Hidden in reply to Bootandall]

Some may think that I'm clutching at straws here, but it seems to be a play on words., which in my mind is unclear.

This new change means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups. However, what does the word donor imply, are you agreeing to donate your organs for transplant, or are you donating them to medical science?

The final say as I see it lies with the family and relatives. They may agree for a love ones organs to be used for a transplant, but not for dissection by students. But this isn't made clear on the website,.

[Bootandall in reply to Hidden]

As you know, l am American, so you may disregard my thoughts and opinions on the subject.

My father donated his body to science. He lived in Canada and obviously was in very poor health (failed kidneys, heart). I know for a fact it made no difference to him how his specific organs were used, he was hoping to advance medical research.

I wonder if organ donation needs to be defined more precisely, but l suppose if there is any question, then there must be a government representative who can give more definitive answers?

My son refuses to sign his driver's license (that's the easiest way to give consent before death in America) due to his fear of being treated less aggressively in a life or death situation in order to harvest his organs. I don't know if this fear is completely unfounded.

Seems straightforward to me, donor implies giving away the physical parts to whatever medical purpose suits. It is all for medical science, transplant or dissection, tissues being replicated in labs. Students become doctors who perform transplants.

Brilliant idea, l hope it is a smashing success!

[Hidden in reply to Bootandall]

Fake news Yanking our chain lol.

Yip we have/ had tick box on the License, but what about non drivers. Bottom line it's the individuals decision to donate, not family's.❓

[sophiaS1980 in reply to Bootandall]

I agree with your son, I have heard this to be the case at hospitals.

[briccolone in reply to Hidden]

Good point-well made!

[Jajarunner in reply to briccolone]

Apparently in the real world many families overrule the donation request or the doctors feel uncomfortable to mention it at such a terrible time. Opt in would hopefully overcome this by making it more of a standard practice.

[Laura009 in reply to Hidden]

I agree it should be made clear as to how donated organs are likely to be used. By wording it positively in this new "opt out" system, people could understand and be more encouraged to learn that even if their loved ones organs aren't used for transplant purposes directly ...... "Their generosity will allow us to improve our knowledge of the workings and breakdown of these organs and to train much needed surgical students to the highest possible standards in order to save more lives in the future."

Laura

[Hidden in reply to Hidden]

Please can you explain what you mean by a play on words here Richard? I’m unsure if you refer to the entire wording or just the word donor. We have always spoken of organ donation. Donation means gift and I don’t think it was ever specified who or how that gift would be used. I understood it always to mean that a donation would save lives but it was never more explicit. The term organ donor has always seemed not quite right to me except in the case of live philanthropic donation. I think it would be more helpful to describe it in another way to reflect that the person who is deceased no longer needs it.

You are right, it will can be a subject that arouses much feeling but this seems an unnecessary complication to me.

Thank you for raising the subject. I hope you are well.

[Hidden in reply to Hidden]

Your right, l am confused over the word, "Donor". I was under the impression that when a person carried a donor card, they were making a conscience decision, for their organs to be used for transplant. I agree with you, that this was a gift. It was a final wish from the donor. A dying declaration if you like. I know the family members have the final say, but l've always believed that the donors dying wish should be respected.

Now, when l was a young boy of 3-years of age, l had an aunt who sold her body for medical science. Out of the money she brought my sister and l some premium bonds.

The way l see it after the 20th May, it is no longer considered a gift as all organs can now be taken, including skin, and for what-ever purpose. The organs will be taken for either transplant, or for medical research. The family still have the final say, but I'm not sure if anyone is ever told, which organs were taken and what was done with them.

I would just like to see a greater clarity about this. Many thanks for everyone's input. It is a delicate subject to talk about, but l just feel that the "Gift" aspect is now no longer as they can now just take them anyway, and for what ever purpose. I believe that a person can still sell their bodies for medical science, but this is to private companies.

[Hidden in reply to Hidden]

I have a different view from yours Richard- I don’t regard my organs as possessions so I can’t regard them as gifts. For me, clarity needs to come from governments (as Bootandall has said above) by way of explanation and education. It’s the duty of government ....

[Laura009 in reply to Hidden]

Yes Richard when person dies who has requested to donate their organs, the family of the deceased is informed as to where the organs have been used. Corneas to regain a blind persons sight, skin for burn victims etc etc. Families find it very comforting

[briccolone]

yes you make some interesting points Richard-for myself they're welcome to any bits they might find useful-obviously not the liver because that's pickled already not much use for anything other than foie gras I imagine....would go down well with a fine chianti........

[Laura009 in reply to briccolone]

Those pickled livers could be photographed and printed onto posters with health warnings and pinned to doctor's surgery walls, hospital walls, university walls and the drinks aisles in supermarkets etc etc etc .... still being put to very good use !

[briccolone in reply to Laura009]

too right laura...

[Hidden in reply to Laura009]

There's a market for it somewhere. 🤮😷

[Hidden in reply to Laura009]

What a brilliant idea, Laura. The more people who can see what can happen to the liver the better. Love and hugs Lynne xxxx

[Hidden in reply to Laura009]

Good if there’s a notice with the liver in doctors clinics saying that many of the drugs they prescribe have the potential to fry your liver. Most people know alcohol damages liver but few know that doctors may prescribe something for you that destroys liver function. I’d never heard it before coming onto this site.

[Dililiver in reply to Hidden]

Yes, welcome to my world fit and healthy one day, 10 days of antibiotics later and liver starts to sizzle

[Laura009 in reply to Hidden]

If you read the enclosed leaflet of all medication , it tells you DONOT EXCEED THE DOSEAGE and a list of potential side effects. If any occur , consult your GP immediatly. The warnings are there. Doctors will always try to give advice for other methods of pain relief such as losing weight to reduce the stress on joints and muscles, exercise/ physiotherapy. If a patient chooses not to take that option or declare it not to be working, the GP will be felt under pressure to prescribe pain killing drugs which are by no means a cure to an incurable condition, merely something to assist with reduction of a symptom there of.

[Hidden in reply to Laura009]

I’m sorry I didn’t make it clear that I meant drugs that doctors prescribed in good faith and were taken in good faith which resulted in irreversible damage. There are many examples.🙂

[Hidden in reply to Laura009]

Absolutely, Laura !

[Laura009 in reply to Hidden]

Thankyou x

[Hidden in reply to briccolone]

I totally agree with you, they can do what they like with my left over bits.

[TT-2018]

Currently the estimated number of extra liver donor organs is around 700 (I might be wrong), so I foresee a closure in the shortage and probably no excess.

The most important part is discussing your wishes with your family and loved ones, as it remains presumed consent.

I completely agree with you about the clarity of the wording and it seems very logical that people understand that their wishes are respected.

[briccolone in reply to TT-2018]

that would be a good outcome-not wishing ill to any future donors....

[TT-2018 in reply to briccolone]

It’s interesting when you look at the forum, you realise that the numbers of suitable donor organs are probably in the minority. I can only reiterate how grateful I am for the new gift that I received on the second time.

[davianne]

Richard,

I would hate to think of viable livers that could give potential recipients a new life, going to waste because of a lack of TP teams. To use them for student training is laudable as it would be, priority should be for actual transplant. They could use the removed livers from TP patients to teach them.

David

[Hidden in reply to davianne]

Respect Capt Sensible. 😜👍

[Hidden in reply to davianne]

What I was trying to illustrate here , was all those liver's over in Wales and Northern Ireland not being used as the distances to the QE in Birmingham, Jimmy's in Leeds, and the Royal Free in London are too far. Although the QE now has a profusion machine to enable the livers to become more viable, there needs to be more regional liver transplant centre's .

Back in 2019 I wrote to Mr Vaughan Gething, Minister for Health Wales. I explained at the time, that Scotland had introduced a minimum unit pricing of alcohol and that I felt they had missed a trick. Had this been introduced as a tax, then the revenue made from this increase could be set aside and used for detox centres, and help pay for the recovery of addicts, both in the community and in prisons. I went on to explain that any extra revenue that this minimum unit pricing would earn, was being paid back to the alcohol producers and the retailers.

I did point out that if this was introduced as a tax in Wales, money could be put aside to help pay for a liver transplant centre in Wales., and be used to pay for other good causes.

I had a nice letter back explaining that EU law prohibited them from imposing a tax on the sale of alcohol as France, Portugal and Germany had vetoed this idea as they saw it as being an import tax on their products. So the EU ruled that any additional tax was illegal.

Now we have in effect left the EU and Wales is set to introduce the unit pricing of alcohol this month , as to where the money will go is unclear.

[AyrshireK in reply to Hidden]

Organs can be flown Richard so distance is never too far! Previously they were iced and transported in their organ boxes and still got there viable - now with the advent of the profusion machines etc. they have an even longer out of body lifespan - people on the super urgent list anywhere in the UK would always get the first available and suitable donor organ no matter in which centre (or by which team) it was 'harvested' - someone waiting in London could have received donation from Scotland (even on the old local allocation system as super urgent list over rode the local system - now with national allocation your organ can come from anywhere).

On the old system organs from across Scotland were always taken from which ever hospital they were collected from on to Edinburgh or 2nd place Newcastle - some of these distances are further from NI to QEB or Wales to London.

Katie

[Bootandall in reply to AyrshireK]

Good info! 👍

[davianne in reply to Hidden]

Hi Richard,

There is certainly a need for more Liver Centre's. I live in South Bucks, and the Trust here has only one Hepatologist, so no chance for a second opinion within the Trust. I will ask to be referred to Kings College Hospital, as I'm not happy with my treatment so far.

I wish hepatologist Consultants would lurk on our forum, so they could learn from us, what living with cirrhosis and other liver diseases, is really like day to day.....in my case constant capsule pain.

Transport of donor livers, will, I guess, all come down to money as they would have to be flown to the recipients centre to ensure they are still viable.

David

[Wass71]

They've had this new system in place in Wales and other parts of the world, is this a known problem in those places. I've not heard or seen any suggestion it's been an issue. The main problem as I understand it, is that relatives can still override the wishes of the deceased.

[AyrshireK]

Now that it is a national allocation system I doubt that at any given time across the whole of the UK there won't be a recipient/donor match somewhere in the system.

I don't know what the post Brexit implications will be but under the old system unused UK organs would also be offered to European transplant units if they couldn't be matched to UK recipients.

Plus, despite it not being advertised widely some of the London centres do offer private liver transplant only they allegedly can only use livers that can't be allocated to NHS waiting patients - this was brought into law in 2009 to prevent paying private patients from queue jumping over NHS patients. royalfreeprivatepatients.co...

I am sure organs won't go to waste even if the move does indeed increase the donation rates.

Katie

[Lobby67]

This is a really good point I hadn’t until now thought of.

I welcomed the proposal of an opt out scheme as in a heightened state of despair, a grieving relative may be inclined not to think rationally about the wishes of the deceased, and like wills and funeral arrangements we tend not to prepare for our eventual demise so filling in donor forms or letting relatives know of our donation wishes get forgotten.

Of course people like us on here, facing the possibility of needing a donated organ will have a different view than that of those who don’t.

The problem For me, thinking about what you have pointed out Richard is the culture we live in. We have a sense of entitlement and I believe this is why a lot of people are so liberal with their opinion. In the 1990’s vast quantities of organs were found in jars in hospital storage, taken without knowledge or consent and they just sat there, not used for research or study, just sat there. Life of man and beast is taken for granted, like school biology lessons back in my day, where rats were dissected for ‘education’ have been proved to be unnecessary and other methods have now been adopted. Not all bodies donated, will be needed.

I think most people will be happy to donate their whole body for however it is needed. I am an atheist and know I will not be a spirit looking down from an imaginary place lamenting the harvesting of my physical form so they can use it for what they want, however that said, I would not be so happy to be as flippant with one of my babies.

I think relatives are already told whether organs are good enough for donation but I believe people need to be informed, and not falsely lead to believe their body will be used for organs if it’s not and will be incinerated with other discarded body parts.

[Bs1524]

Sorry for my tardy response I have always been a willing organ doner way before my husband became ill. One other way of looking at it is would a person be a willing recipient of a doner organ if so they should also be a willing doner. I really don’t mind what they do with any useable bits of mine I won’t be needing them x