Author Topic: Prevent disability discrimination in organ transplants  (Read 199 times)

huhn

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Prevent disability discrimination in organ transplants
« on: March 06, 2018, 08:15:47 AM »
https://petition.parliament.uk/petitions/212551
People with disabilities, such as Down’s Syndrome, should be as entitled to organ transplants as everyone else. Many parents of children who have Down’s Syndrome are told that their children won’t be put on the transplant list. Each child should assessed on an individual basis.

Sunny Clouds

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Re: Prevent disability discrimination in organ transplants
« Reply #1 on: March 06, 2018, 12:55:59 PM »
Are there any NICE guidelines or local policies that say disabled people shouldn't be discriminated against in relation to organ transplants?  If not, what difference would a parliamentary debate make?  If it's a policy matter, surely it's NICE that needs to be lobbied, not parliament?
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

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Re: Prevent disability discrimination in organ transplants
« Reply #2 on: March 06, 2018, 01:08:00 PM »
Are there any NICE guidelines or local policies that say disabled people shouldn't be discriminated against in relation to organ transplants?  If not, what difference would a parliamentary debate make?  If it's a policy matter, surely it's NICE that needs to be lobbied, not parliament?

Link to NICE guidelines:-

https://www.nice.org.uk/guidance/service-delivery--organisation-and-staffing/organ-and-tissue-transplantation

Sunny Clouds

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Re: Prevent disability discrimination in organ transplants
« Reply #3 on: March 06, 2018, 01:22:23 PM »
Well, I can't see any guidelines there that appear to be about prioritisation. 

If parliament were to debate every issue where there isn't a NICE guideline on it, we might as well not have NICE, but just let parliament write the guidelines.

I'm sympathetic to the issue of equality, but I struggle to see that this is something parliament should be debating.  We have laws relating to equality in general.  I don't see any evidence that there is any guideline that non-disabled people should per se be prioritised over disabled people.

That being so, if there's a problem, it seems to me that it's a local problem or a policy matter at NICE or CCG/Health Board level, or at hospital/trust level.  It may even be a matter relating to an individual decision that is being made or has been made, which could be, according to what happens, a matter for the Court of Protection, a civil court in relation to negligence, a criminal court in relation to manslaughter by negligence, a professional body etc.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Prevent disability discrimination in organ transplants
« Reply #4 on: March 07, 2018, 07:43:29 PM »
This really surprises me (to an extent because of my nursing knowledge). My daughter looks after a child who has Trisomy 18 who are rarely born alive, he also has Jacobsen syndrome which is another chromosomal disorder, deletion 11 and he has dwarfism. No other child with his conditions has lived as long as he has and yet he's had heart surgery, kidney surgery and is on the waiting list for a heart and lung transplant. So, what's the difference? I know a fair bit about this lads disabilities as I've known his mother since pregnancy when she was bullied in the attempt her to abort him as trisomy 18 babies are never born alive but I know less about the chromosomal disorder that causes 'Downs'. Could it be that all their major organs will fail in a certain timescale so the doctors feel they cannot justify using organs that would extend someone else's life by 50 years when someone with Downs may only live another 5 years because their other organs are also failing? But ageism isn't allowed in medical care, a new thing since my nursing days but I saw a sprightly and lively if blind 99 year old lady have a hip replacement and she made a fantastic recovery. I suspect she put young'uns to shame in the occupational therapy room climbing up and down steps days after surgery. Her life even before the ageism laws were created was seen as valuable despite her age.

Maybe it's because she needed one major operation whereas downs adults rarely live beyond their 40's because all of their major organs fail due to the chromosomal abnormality. I'm not at all saying it's right I'm just trying to see where the transplant specialists are coming from when organs are so scarce. The 99 year old lady was receiving an artificial hip to extend her quality of life but to replace one organ that many people need to give to someone who has all of their organs at various stages of failure. And yet, despite seeing a medics dilemma here and I can see where they're coming from, one organ can extend one persons life by 30-40 years so they can bring up their child or give it to a Downs syndrome adult whose other major organs will fail in the next 5 to 10 years. And yet you can't put a price on life and everybody should have an equal chance of an extended life even if one recipients would be far shorter than another so I do fully support this campaign, you can't put a price on life. All I'm saying is, while I totally back this campaign, I do see where the transplant specialists are coming from.

Need I duck?

oldtone27

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Re: Prevent disability discrimination in organ transplants
« Reply #5 on: March 07, 2018, 07:58:28 PM »
Fix, I don't think you need to duck. What you have done is highlight a very real dilemma. I don't know what the best answer is. How do you measure the worth of one life against another?

I suppose one logical measure would be who is likeliest to benefit the longest. Not sure this is the right measure but is there a better one?