to expect that we should all be entitled to safe blood products in hospital

[Beaaware]

About 2 years ago I discovered that our blood supplies were not screened for the human form of mad cow disease (vCJD). A close relative of mine was given a blood transfusion without any knowledge of vCJD and may now go onto develop the human form of mad cows disease, they are devastated that they were not given any advice by the medical team that cared for them. Am I being unreasonable to think that we should be told what we are being exposed to when we are given blood products that could be contaminated with deadly vCJD prions from unscreened blood donors and that we are unable to ever donate blood or organs because of this?

There is no test for vCJD - so how can blood donors be screened?

People give in good faith and they are asked a long list of questions - but if NO test for a condition is available then they cannot test for it.

Sorry for your situation but I have experience of a family member who was given potentially contaminated blood - there was no test so it simply was bad luck.

Presumably your relative would have died without the blood products?
Are you saying that your relative received contaminated blood - if not why are you worrying without cause?

This is a subject close to my heart and people give blood in good faith - there are conditions out there that they cannot test for because the tests have not been developed.

And frankly, in some cases the conditions themselves have not been fully characterised - I'm thinking of some of the Hepataitis variants here.

Haven't you posted this thread before OP?

Like about 5000 times?

agree, mowiol, but I think we do dish out blood products without mentioning risks at all...I'm thinking more pooled products when you are exposing someone to multiple donors...perhaps we should be at least acknowledging that a risk exists?
There is lots of emphasis on appropriate prescribing, only using any kind of blood product when no alternative etc, but not much on informing the patient ime. Obviously that isn't always an option.

Oh, really Northernlurker?? - looks like I got suckered good and proper!!!

Mybaby.... well, I know about the lab side and testing etc. BUT frankly, if a patient needs a product and they will die without it - not much of a choice is there?
I don't know what medics say with regards to risks etc. but surely they must say SOMETHING because they usually do with any intervention?
Anyway - if you need a blood product you are probably between a rock and a hard place and if you are bleeding out you either take it or die there and then.
It's a bit of an all or nothing scenario when it comes to most blood products.

yes I've seen this thread beforea s well

YABU Not all dieases can be screened for so by your logic no-one would have any access to blood so many would die.

Beeaware no medical procedure is 100% without risk. So deal with it. You sound like one of those nut jobs who feels the need to "educate" everyone about matters they don't really understand themselves.

So if you're ever injured and need a blood tranfusion, I trust you'll choose to die?

As others have said, there's no test for vCJD. Which means that over here in Australia, anybody who has lived in the UK for more than 6 months (in total) between smoething like 1984 + 1996 is forbidden from donating blood. (at least I think vCJD is the reason for it!)

This thread has been posted before, certainly on the Health forum. I'm not sure, OP, what you are trying to achieve. Receiving body fluids from a stranger is always going to present a risk, yes. Surely everyone knows that. But the NBS does everything it can to minimise the risks. It eliminates groups of people from donating who might theoretically be at higher risk of carrying infections (former intravenous drug users etc). It screens all donations for everything they can be screened for. What else can it do? There is no test for vCJD and you have been told this before - not sure why you're still posting and sounding so shocked about it. Your relative has a theoretical risk of contracting vCJD from a blood transfusion, but the risk is that - theoretical. There's no proof yet that this is a definite method of infection. If your relative had eaten beef or any beef products between 1984 and the 90s when BSE emerged as a risk then they're just as much as risk from that as well. On the other hand, if they hadn't had the transfusion there is a much greater risk of dying from whatever it was that necessitated the blood. Any medical treatment is about balancing risks. Blood transfusion saves hundreds, thousands of lives a year and has revolutionised medicine - without it complex surgery such as transplants, open heart surgery, hip replacements etc wouldn't be possible and women would die much more frequently in childbirth. Balance that up with a possible, theoretical risk of contracting vCJD and it's a no-brainer.

Can you accept this and stop trying to scaremonger please?

Hear Hear Lurcherlover!!

My point is that we are not being informed of the risks associated with blood products in this country. Of course it is obvious that when faced with the dilemma of a blood transfusion we have no choice but to have it, however, there is a medical breakthrough that prevents the spread of mad cow disease via blood transfusion, the P-Capt filter. More than 60 adults having surgery have received blood free of the risk of variant CJD in trials overseen by the National Blood & Transplant Authority (July 2009). The filter can remove vCJD protein (called prions) from blood in just 30 minutes eliminating the patients risk of catching the brain disease.
The P-Capt filter is deemed to be too expensive for NHS patients. The filter could restore faith in British blood supplies which are proven to be tainted with vCJD after several deaths related to transfusion.

I am hoping that we can at least be given the choice of purchasing one of these filters in hospital should we ever be faced with the dilemma of a blood transfusion. I don't think this would be unreasonable as I would certainly not want to be told after my operation I may develop a brain wasting disease. HIV & Hep C I could cope with but not mad cow disease.
Currently for under 13 years old blood is imported as a precautionary risk. Over 13 it's pot luck unfortunately.

I think the OP decides which crusade she's going to follow and stick with it....

yes there is a risk, however if you cant screen for it, what do you want them to do, say sorry, were not sure whether or not this blood is infected by something we dont know an awful lot about so were going to sit here and watch you bleed to death and hope you body sorts its self out in time so you dont actually die?

when my mum was giving birth to my older sister she lost alot of blood and had to have a blood transfusion. my mum can no longer give blood because of the transfusion she received, however 25 years on she is still alive, she went on to have 5 more children and was able to be a mum to my older sister rather than a grave stone, she has not developed mad cow disease, and even if she does she has led a good life that was prolonged by the 4 pints of blood she received after birth. she is great full the blood and the technology was there, and she has never given a second thought to the fact she may develop mad cow disease because of it.

would you rather your close relative had died that day? thought not. are you happy they are still alive and able to be a part of your life?

now take lurchlovers advice and stop trying to scaremonger and leave this alone

A cynic might think the OP may be trying to advertise a product currently being evaluated and is hoping that the might of mumsnet may sway opinion that it should be used.

okay I'll sweep it under the carpet

ratspeaker, is it currently being evaluated, tell me what you know before | get my hoover out.

The blood transfusion service in this country is one of the best/safest in the world. It is not possible to screen for everything.

I'm not sure how it stands now, but it was interesting a few years ago that the UK was amongst the list of 'you can't donate blood if you've visited here in the last 12 mths' for some countries because of CJD.

You'd be criticised a lot less on MN if you didn't always start your posts on this subject with going on about how shocking it is that blood donors are not "screened" for vCJD when there isn't a screening test, and you know that there isn't a screening test.

Your real point is lobbing for the universal adoption of the P-Capt filter (not screening), which again you don't mention until your second post. You may well have a good point there and certainly the government does seem to be dragging its feet over making a decision and publicising its reasons, but you are alienating other posters with this disingenuous approach.

They have almost developed a test for CJD in America, it's at the patient trials stage now so should be out within a couple of years. This has consequences in itself, all potential blood donors will be screened and if positive will (apart from the horror of knowing they have a terrible disease) have to inform their employers, mortgage company, insurers etc.

Currently only 4% of the population donate blood and they expect it to drop to 2% when this test comes out. I don't know if I will still donate, not sure how I'd feel knowing this disease was coming, as well as the risk to my job and security???

Have recently been on a blood study day at work, can you tell!

x

ProfessorLaytonIsMyLoveSlave, look I'm not lobbying for the filter on here, I've read that it works, safeguards blood for transfusions, asking if it is unreasonable to have the choice to buy one, asking if patients have the right to know what risks they undertake by accepting donated blood, am I being unreasonable? asking too much perhaps? plugging the hoover in now

Are you being unreasonable to think that every patient in an emergency situation should be given a specific conversation along the lines of "Hello, Mrs X, now if you'd like to stop bleeding for a moment I'd like to have a chat with you about vCJD. We don't know how many, but some of our best estimates (which do vary widely) suggest that around 1 in 4000 units of blood might contain vCJD prions, and that if you receive a unit of that blood you might, in a decade or more, go on to develop vCJD. Or you might not. We don't know what the chances of that are either. So you have probably, as our best guess, about a 0.025% chance of receiving infected blood, and a completely unknown chance of actually going on to develop the disease at some completely unknown point in the distant future if you do fall into that 0.025% chance. I hope you feel massively better informed now about the precise level of the risk you are undertaking..." rather than just relying on the standard consent to the generalised risks of blood transfusions? Well, yes, I think so. You don't have to agree.

I do think the filter is interesting and worth exploring, if the test results are as good as suggested. I would have absolutely no problem with your lobbying for greater knowledge of and support for it. But you always seem to start your threads with posts about how shocking it is that UK blood supplies aren't screened for vCJD (when it can't be screened for at the moment), and then wait for people to point out to you that it can't be screened at the moment, and then say "Ah, yes, but they do have this marvellous filter...".

Why not just try starting your threads with "I realise that blood stocks can't be screened for vCJD, but I think the risks should be better explained to patients and I would like to know what the DH position on the P-Capt filter is, given that they were doing tests on it and were supposed to have made a decision by now" or similar?

How do you sweep under the carpet with a Hoover anyway? You may have attached the motor the wrong way round...

Wow - I just did a search to see how many times this has come up before - beaaware you have been busy. Now, sadly, I fear MN has become fatigued by your posts on this subject. We are clear what you think, off you pop and switch the hoover on...

{ponders a new category of Talk - AISBU - am I still being unreasonable}

As I understand it SaBTO (advisory commitee on Safety of Blood, Tissues and Organs ) recommended that P capt filters be used on blood given to children born after 1st jan 1996, I beieve there was a rider that it was subject to PRISM (platelet receptor inhibition for ischemic syndrome management ) trials being completed.

I believe there have been some studies looking at the filtration times, filter failure and loss of heamoglobin, at present I dont know the conclusion of these studies.

The question of P cat filters was also raised in the House of Commons earlier this year.

The OP initial post seems to be scaremongering rather than presenting facts
If teh OP had said, look there's a filter that may reduce the risk of CJD prions being passed on, what do you think about them being introduced, it may have produced a more sympathetic and reasoned debate

For the record I am in the position of having received a blood transfusion in 1991 therefore cannot now donate in case I carry the prion, so there's a big precaution BTS have taken there, (also reducing the numbers of donations they recieve)

I can't say I am going through life worried about developing CJD, I lived, I've had all these extra years
There are ALWAYS risks in accepting blood ( or other body parts )

Edinburgh 1970s had an outbreak of hepatitis due toblood being used for kidney dialysis being infected
True, now there have been test developed and futher precautions taken so this is unlikely to happen again