Please write to your MP, Contaminated Blood

[susie100]

I have a favour to ask of the mumsnet might!

My father is a haemophiliac who caught Hep C as a result of a blood transfusion. He is one of the luck ones in that he is still alive, almost half are not.

?The Archer Inquiry investigated the fact that between the mid 1970s and late 1980s, 4,670 people with haemophilia were infected with hepatitis C through their NHS treatment. Of these, 1,243 people with haemophilia were also exposed to HIV. Almost half of those infected with hepatitis C, and almost three quarters co-infected with HIV and hepatitis C, have since died. Many have experienced poverty and discrimination as a result of their infections. It's recommendations would offer appropriate support and compensation to those affected and would ensure that steps were taken to improve blood safety in the future.

The last Government argued that the reason that financial support was not being made available at comparable levels to those paid in the Republic of Ireland was because of differences in the disaster between the two countries. However, that argument has now been defeated at Judicial Review. It is now a vital time for the campaign as the Government must respond to the court's ruling before the 21st of September.?

So I am lobbying as many people to write to their MPs as possible using the format below in the link!

It is too late for a lot of the people infected but I know from dad that this really is not about the money but about recognition for the families and sufferers as haemophilia patients were effectively experimented on!

www.haemophilia.org.uk/get_involved/Contaminated+B lood+Campaign/Campaign+in+Parliament/Write+to+your +MP

Thank you and big hugs

Bump

A good friend of mine had this happen to him and I would say it effectively ruined his life before he was even old enough to realise what was done to him. Well done for posting this: your dad should be proud of you.

So bump again!

Thank you openerofjars, you have made me cry!Sorry to hear about your friend.

I know there are a couple of mumsnetters who this has affected, not sure if they are still around though.

Huge steps have been taken to ensure blood is safer though, so that is separate from compensation issue (trying to reassure you not argue, but I'm rubbish at getting tone across). I know someone who works for the Scottish arm of the blood bank and tracks donor-recipient for all the blood products and would be alerted if anyone on her connection web had any problems, then tracks down everyone on it, even though it nearly always turns out to be nothing. It also means they can minimise the number of donors for people receiving regular transfusions.

I am very sorry for your dad though, it is a horrible situation to be in. I do feel it was borne of ignorance and people trying to help though, not malicious scientists infecting people as guinea pigs and there should definitely have been more steps taken to stop your dad feeling that way (for his sake). I think it is sad for everyone involved.

LamberDinghy - I agree that the blood safety is a lot better now. Not perfect by any means (CJD for example.

However, unfortunately there has been clear evidence of the government, NHS and pharma companies not acting quickly enough when this information came to light. Blood was purchased from America. This blood was taken from prisoners (sold) and was completely unregulated.
They were aware of problems since 1960 and did nothing.
Haemophiliacs testifying in a class action suit in the US have been intimidated and threatened, as has one of the lawyers.

As recently as 1990 haemophiliacs were not entitled to recombinant factor VIII (which is synthentic)

If you would like to know more about it, have a look at this

badblooddocumentary.com/

I agree that they screen a lot better now: I had a blood transfusion as a child in the 1980s so am not allowed to give blood in case of vCJD contamination (I have been tested for everything else but you can't test for vCJD).

But the way that the recipients of the American prison blood have been treated is abysmal.

My friend has depression, has suffered from alcoholism, has never been able to sustain a relationship for long, has no job prospects as he is unable to work due to his long-term health problems and has no real focus in life. He is ill a lot. He is 40 now, and we are really glad he's still with us, but because he never expected to reach 30 he has lived the student lifestyle for the last few years, which hasn't helped his health. Now that his friends are starting families we see less of him as he finds it painful because he feels that he will never have this. My DH makes sure to see him when he can, and is having a lads night out soon, though.

So yeah, an arse-kicking is in order.

Here's your link, btw :
EVERYONE! WRITE TO YOUR MP ABOUT THIS! www.haemophilia.org.uk/get_involved/Contaminated+Blood+Campaign/Campaign+in+Parliament/Write+to+your+MP

Here's your link, btw :
EVERYONE! WRITE TO YOUR MP ABOUT THIS! www.haemophilia.org.uk/get_involved/Contaminated+Blood+Campaign/Campaign+in+Parliament/Write+to+your+MP

Oh, FFS

http://www.haemophilia.org.uk/get_involved/Contaminated+Blood+Campaign/Campaign+in+Parliament/Write+to+your+MP

Sorry, Susie, I was trying to help but now I just look really stupid. Blardy thing won't work: I think my work computer is being bad. I swear I'm typing properly!

I'm just going to have one last go and then I'm going to run away in shame:

www.haemophilia.org.uk/get_involved/Contaminated+Blood+Campaign/Campaign+in+Parliament/Write+to+your+MP

Thanks openerofjars! Should get it seen a bit more :)

Oh no sorry, I agree with most of your points, I just don't want to demonise the current blood services as they seem to be trying very hard and doing what they can, even regarding CJD. They don't pay for blood because of the prisoner case and screen and track to their best possible knowledge and for good (morally) incentives. They also try to limit transfusions to where the only other outcome is dying.

I totally agree that their should be compensation for and learning from past mistakes. I just think that if we start grouping in people who are trying their best, despite not having the same knowledge we'll have in 20 years time, we risk no-one trying anything new and making progress that will benefit people. I would theoretically only hold them (Pharma, NHS) accountable for the people that fell ill after they knew better, but that is hard in practice as well.

I also wish we could remove stigma from all people with illness and I'm not sure I like the idea of some people being more deserving of illness than others. I worry that the message "these people were not at fault" is hard to separate from assigning blame to the rest of people with Hep C and having bad knock on effects of high-risk people not testing. I think we need to tread very carefully, that's all.

I work with studying disease at a population level and sometimes forget the real person effects, so it's nice to be reminded and humanised instead of always thinking academically, thank you, I hope your campaign goes well.

I totally agree lamber, terrible for anyone to be stigmatised at all.
In fact my father did not tell anyone for years as there is so much ignorance about transmission. Very sad for everyone concerned!

More info on this and evidence of wrongdoing here
www.taintedblood.info/evidence.php

Oh, what the heck - BUMPPPPPPP again!

I've written to my MP

Thank you, I really think it can make a difference.

Well done Susie for highlighting this.

They are a pt group that have been well and truly shat on.

Does your Dad know about the Skipton fund which pays out to those who were infected from blood products?

Its a shame there is so much public apathy about this.