Are you on the organ donor register?

[pinkyp]

If not why not? - just out of interest as my partner is going to be doing some fund raising and raising awareness of this. It'd be helpful to know those who chose not to be why they don't want to. Also if you are what made you decide? Thank you

I am not on the organ donor register because I have no idea if I am an asymptomatic carrier of human BSE (vCJD/nvCJD), many people are told that they cannot become organ donors due to having a blood transfusion or contact with contaminated surgical equipment as they are deemed to be at risk of human BSE. If you have lived in the UK between 1980 - 1996 you are unable to donate your blood abroad I believe this applies to organ donation also. Sadly until the government decide to introduce mass testing for human BSE on organ & blood donors nothing will change in the UK and we will continue to be exposed to this lethal brain wasting disease that has no cure, no treatment.

i think when i applied for my provisional driving licsence i signed up they can have everything but my eyes i think i said. ive got my card in my purse and OH knows thats what i want. gonna sign him up at some point soon when we get round to it :). at the end of the day its a cold dead body and my 'essense' will be floating around haunting people

They are welcome to anything....but I plan to knacker out all organs well before that . Remember to update details if you move, very easy to do online!

Yes, I've been on the donor register since I was about 15.
My FIL had a kidney transplant 8 years ago, just a week before my DC1 was born, he'd been at deaths door numerous times before that (at one point he was given 24 hours to live) and it's amazing to think he is still with us now.
He has Polycystic Kidney Disease and has been seriously ill with it since the age of 35 as it's genetic my DH has it too and my two children have a 50% chance of having it when they are older.
I am so glad that transplants are available to help families like ours.

thats fantatic that so many of your are on the list! This is a fantastic website with a list of the common questions people ask...
www.organdonation.nhs.uk/ukt/how_to_become_a_donor/questions/questions.jsp

i particularly like the "how do they know your really dead" question

I am curious to know what the policy is with donating organs and human BSE and what tests are done to ensure organs are free of this disease before transplants are carried out, have sent a couple of questions to the website mentioned above, I did read recently that vCJD was found in the spleen of a haemophiliac at autopsy, I presume that the spleen is an organ but I'm unsure if they are used for transplants. Also I think I am right in saying that haemophiliacs are unable to be donors due to infections from blood such as HIV, Hep C & Human BSE.

Not any more because I emigrated to Australia and in common with many other non-UK countries, I can't give blood or anything else because I am likely to be contaminated with BSE vCJD . Bloody annoying really.

But - I feel like I have made a contribution to the general effort by spending 10 years in the NHS working in blood banking and transfusion, and tissue typing for some of it as well, so not a complete non-contributor. And I gave blood while I was in the UK too.

Beaaware - unless things have changed since I was working in BTS, if you have received a blood transfusion or any blood products they don't like taking blood off you, just in case. Even though all blood donations are tested for infections like HIV, Hep B and Hep C, syphilis etc.

Spleens are not transplanted - they are not considered essential and they contain far too much in the way of immune cells to be a successful transplant. If someone loses their spleen, they can cope without it.

Yes, one of my closest friends is the grateful recipient of a kidney transplant, (but I'd do it anyway).

There is no blood test for BSE/CJD at present so they cant screen. However, the incidence is very low and frankly, if you need a heart transplant, you're probably going to be prepared to take the (minute) risk.

TheBride, sorry disagree with you but there are tests to screen blood and humans for vCJD/nvCJD also there is a decontamination solution to remove rogue prions from surgical instruments, BUT the important issue here is that the DOH has not implemented these screening tests to stop the spread of this disease. In fact David Cameron was only talking about this very serious health issue in the house of commons on 11th May 2011 when concerned MP's were raising questions on should & could the government be protecting the public seeing as they have the available technology. Personally I would prefer all organ/blood donors to be tested for this lethal brain disease as there is no treatment or cure for human BSE the government should stop delaying these vital screening tests, any risk of transmission of human BSE via blood or organs is not acceptable in 2011. Sadly people are still being infected, but these victims rarely make headline news.

I'm not. I've had hepatitis, and am therefore not eligible - but I would be if I could be.

actually, come to think of it, I've assumed that - I know I'm not eligible to give blood. Does the same apply to organ donation?

TheBride, sorry disagree with you but there are tests to screen blood and humans for vCJD/nvCJD also there is a decontamination solution to remove rogue prions from surgical instruments, BUT the important issue here is that the DOH has not implemented these screening tests to stop the spread of this disease.

I thought it was in development, but not yet beyond prototype.

www.guardian.co.uk/uk/2011/feb/03/human-bse-blood-test

It sounds as though the ones they have are pretty unreliable if this one is only picking up 15/21 cases and yet is billed as a vast improvement. If that's the problem, then the government would have to question the benefit of using these tests at all if they're missing, say, 50% of cases

I have had a read of the research papers - there is no currently available test for BSE/nvCJD that is accurate enough to be much use. The best one they have so far only picks up 71% of active cases - and since there is more prion in an active case then a pre-clinical one, it will miss far too many. There is no point in testing while there are too many false negatives, as it creates a false sense of security. The test needs to be a LOT better than it currently is to be of clinical use.

here are some links to recent developments re: blood screening/filters/decontamination:

www.medicalnewstoday.com/releases/224732.php
www.medicalnewstoday.com/releases/221679.php
www.nature.com/nrneurol/journal/v7/n4/full/nrneurol.2011.html
www.prion.ucl.ac.uk/press-media/press-releases/blood-test-for-vcjd/
www.prometic.com/en/protein-technologies/prion-capture.php
Sabto (Safety of Blood,Tissues,Organs) recommended the adoption of the Macopharma P.Capt filter to the DOH as far back as 2009, as far as I am aware this has not been adopted in UK hospitals to date.

www.ncbi.nlm.gov/pubmed/21492178

Your first link is a version of the article I linked to in the Guardian. Yes, there are advances. I don't think Thumbwitch or I are denying that. However, if you look at Thumbwitch's stats (from the papers on which these articles are based) there's still a way to go before it gets to an acceptable level of accuracy.

SABTO's recommendations are laudable, but they have no budgetary responsibility. Many, many things are recommended to the government that they can't afford to implement on a cost/benefit analysis.

They will absolutely not start to use a test with such low outcomes. Nor should they - false negatives are dangerous. The sensitivity of the test needs to be increased enormously before it becomes clinically acceptable.

And just so we're clear, my info is from 2011.

The prion filter by Macopharma is interesting as it has been approved for use due to its accuracy at filtering blood but it is not actually in use in the UK from what I can understand. I am making enquiries about this particular product in case I or any member of my family ever need a blood transfusion, I simply cant see our DOH introducing widespread screening/filtering due to the costs involved, but I would like to think that I have the choice as to whether I am being given infected or non-infected blood should the need arise. Will be interesting to see when or if ever they introduce screening for organ donors, I have read somewhere that they 'could' test for vCJD at autopsy so in theory they should be able to test the deceased organs for vCJD before transplanting.
I do hope they introduce the STERIS decontamination prion removal detergent into our hospitals, I was reading that ' Prion contamination is now a major consideration in the healthcare environment, NHS trusts up and down the country are looking to re-enforce their services strategies to protect patients from the risk of CJD/vCJD transmission' Dr.Gerald McDonnell, Vice President of Research & technical Affairs Steris. I would happily pay privately for this if it were an option before any operation involving stainless steel surgical instruments.l

Yes - and bone marrow register. I donate blood too. Anything that can be of use to anyone after I die can be taken as far as I'm concerned.

Beaaware - when there is an appropriately accurate test to test for nvCJD in blood and blood products, it will be used. There are laws governing this - ALL blood has to be tested for syphilis (that is stated specifically and dates back to post-WW2 when most blood donors were soldiers and about 1/3 of them had syphilis) and ALL donated blood has to be tested for HIV, HepB and HepC. WHEN a suitable test becomes available, then blood will be tested for nvCJD as well - it is covered by laws protecting patients.

Can't answer re. the prion filter.

thumbwitch, the Macopharma P.Capt filter has received European Regulatory Approval (CE mark), means that the filter meets European essential requirements for safety of medical equipment.The P.Capt filter has been extensively & independently tested for 3 years (as at 2009), it works (99.9% or greater of reduction efficacy) to reduce transmission of vCJD from transfused blood. Its safe & available now (2009), its adoption makes sense because everyone is entitled to safe blood and organs.
I think that this filter should be available at Boots or any chemist in the UK, at least this could be a choice in the event of an emergency, at the moment we have no choice, and that can't be right when the technology is available.

I carried an organ donor card for many years, but after I was ill with cancer I was told it I would no longer be suitable when I phoned and inquired. Can't give blood either.

I do applaud everyone who has a card though, - its a great thing to do. (All the rest of my family do have cards, and I'm leaving my body to medical research - should they want what's left of it! )

I can't see a reason why it isn't used in the UK except that it takes 35-40mins to filter blood through it, which wouldn't be much use in an emergency situation. Apart from that, blood survives well through it; but that is a loooong time to wait for it to filter when you are pushing blood in at the rate of a unit every 5 minutes (happens - they squeeze the blood in)

So, don't know the answer entirely.