Numbers of organ donors dropping.....

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Post Reply
Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Numbers of organ donors dropping.....

Post by Soobee »

http://www.bbc.co.uk/news/health-33560433

As someone on the waiting list this is so depressing..... how can we raise awareness? 42% of families overriding their loved ones wishes to donate seems so many.
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Numbers of organ donors dropping.....

Post by Thumps »

I don't understand why relatives are asked. If someone's on the register, their wishes are clear. Tell them, don't ask them. It's so silly.

Having said that, I'm not a fan of presumed consent, especially if it's combined with family veto, I think the numbers would drop even further.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Numbers of organ donors dropping.....

Post by SKM23435 »

I agree.
I've spent part of the day mulling over the question of " what can I do to help". I didn't come to any great conclusion.
One of the things that has really hit me over the past year is the general ignorance of kidney disease out there in the general population.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Re: Numbers of organ donors dropping.....

Post by Soobee »

Thumps - I think they are asked because although next of kin can't legally override the decision if medics were to go against their wishes the media fall out ("doctors stole organs etc) would do more damage to the campaign....

SKM - I know, I don't know what I can do either. Most of my friends 'forget' that I am on dialysis because i 'seem so well' and I am regularly asked at work if I am still on dialysis? or 'oh, hash't the dialysis cured you yet?' I don;t want to go around reminding everyone or complaining but if I could somehow raise awareness....

The main problem seems to be people not discussing their decision to donate with their family, I don't believe that 42% of families would refuse to follow their loved ones wishes if they had time to consider it and were not put under pressure and in grief.

I do feel that the national campaigns are wishy washy and ineffective......
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Numbers of organ donors dropping.....

Post by MandyV »

There are many reasons for the drop in numbers but clearly the more people who discuss their wishes the better!

The article is badly written because it is not 42% of people who have signed up where relatives over rode their wishes but 42% refusal including 120 cases of family override. Only c30% of people have actually signed the ODR and so we need to encourage people to discuss their wishes and hopefully sign up ....

NHSBT constantly work on ensuring that the family over ride is avoided including research about how to best approach the family. It is critical that families are 'onside' not only because we do consider donation to be, as the name suggested, a gift, but also because the family need to answer questions about lifestyle, health etc ....
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Numbers of organ donors dropping.....

Post by Grey »

Well I am 100% in favour of having an opt out system rather than what we have now. After all most people do not sign up because they are unaware of donation or too busy to give it a second thought. With an opt out they HAVE to do something or be a donor. At the end of a day a deceased person can't chose any more, they must chose while alive or be considered a donor. Simple.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Numbers of organ donors dropping.....

Post by wagolynn »

We should be putting much more effort into other sources of kidneys, pigs, kidneys grown in the lab etc.

When you are dead you really don't care what happens. However, when thinking about donations I think a high proportion of people think about their remaining family, it is their grief, the body is all they have left. This thought will bias against donation, and I don't think it is considered.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: Numbers of organ donors dropping.....

Post by Tibbs »

When Spain moved over onto the opt-out model, there was a massive increase in the level of organ donations. However, when they looked into why, it wasn't actually directly due to the opt-in. It was as a result of the conversations people were having about transplantation because of the change in legislation.

My family know that once I'm dead, tney can take what they want. If they say no, I'm coming back to haunt them! :P
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Numbers of organ donors dropping.....

Post by SKM23435 »

I informed my family that as their next of kin - they would all be donors if I was ever asked ( or brought up the subject myself).

Looking at the healthy looking woman before them they laughed. I guess seeing the benefits makes the argument easier.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Numbers of organ donors dropping.....

Post by MatthewC »

I was quite surprised to learn only last year that a family can over-ride the clearly stated wishes of a deceased person who has signed a donor card (etc). It seems daft that they should even ask the family if the person is carrying a card - the consent should at the least be presumed in that case.

The key has to be that anyone who wants their bits to be donated should have that discussion with their next of kin even if it does seem a bit odd at the time. As a kidney donor I have made it clear to my family that anything that is left which is useable when I die should be used - and if they go before me I will offer theirs as well.
Post Reply