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Time running out for haemophiliacs' bill

Susan Watts | 17:52 UK time, Friday, 26 February 2010

Health Minister Gillian Merron has offered to meet the sponsor of a private members' bill on contaminated blood as the bill ran out of parliamentary time for a second time this afternoon.

The bill aims to help haemophiliacs infected with fatal viruses such as HIV and Hepatitis through the NHS products used to treat them.

With the Conservatives and Liberal Democrats making supportive noises for this community, this could even become an election issue.

The bill was introduced in the House of Lords by Lord Morris, veteran champion of disability rights.

But problems began three Fridays ago when the 2.30pm cut off for private bills approached and the whip on duty, Kerry McCarthy, stood up and shouted "object".

Ms McCarthy said this was a simple matter of procedure, and seemed surprised at the angry reaction of the haemophilia community.

Ms McCarthy tried to explain: "The government's view was that it was not appropriate for the Bill to go through without a proper debate in the Commons, ie the objection was to it going through 'on the nod', rather than to the Bill itself.

I was the duty whip that Friday, so it was my responsibility to announce the government's decision on that occasion."

So the government says it couldn't allow the bill through "on the nod" because it thinks it should be debated. Lord Morris, who fought for compensation for the victims of Thalidomide, and knows a thing or two about parliamentary procedure, knows the tricks a government can use to thwart a bill it dislikes.

He told me: "If she had not shouted object to the bill it would now be in committee, debated line by line. What took place prevented any further debate on the bill. But this bill is not dead, and it remains no less than the haemophilia community deserve."

The bill is back on the books again for next week, and again in March.

None of this is new for haemophiliacs. This month Gordon Brown brought together his two worlds - the personal tragedies of family life and the day-to-day hustle of politics and government - when he chose to talk about his children.

Britain's haemophilia community has had no such choice. For decades, the mundane practicalities of their daily lives have brushed up against politics and government.

It was NHS treatment that meant they became infected with fatal viruses, such as HIV and Hepatitis. They have fought government departments, threatened court action and lobbied politicians to secure payments that they say go only a small way to recognising what has happened to them, and meet their financial needs.

Successive governments have refused to hold a public inquiry into what went wrong. And when Lord Archer held a privately-funded, independent inquiry it took months for this government to reply to its findings.

Lord Archer wanted decent pay-outs for those affected and their families. The government responded with revised payments close to the minimum wage, and only a fraction of those paid out in other countries - most obviously Ireland.

Lord Archer wanted more for widows, many of whom are excluded from financial help, and assistance with things the rest of us take for granted, like life insurance - which haemophiliacs find hard to obtain.

This week saw the first anniversary of the Archer report, yet most of these recommendations have been left unanswered. And there has not been a debate in the House of Commons in government time - as the Archer team was led to expect.

That is when Lord Morris, a supporter of the Archer Inquiry, stepped in with the private members' bill instead.

The haemophiliacs themselves will certainly not let this rest. In fact, next month haemophiliac Andrew March is taking the Department of Health to Judicial Review.

His case challenges the government's decision not to implement Lord Archer's recommendation of compensation at least at the level of that awarded in Ireland.

In the meantime, his haemophiliac friend Haydn Lewis has a tragic family story of his own. Haydn was infected with HIV in the early 1980s via the NHS blood products used to treat him. He inadvertently infected his wife Gaynor with HIV before he knew. He also contracted Hepatitis B and C from the same NHS treatment, and has been told he is at risk of having contracted vCJD.

You can see Haydn here in one of Newsnight's many reports on this issue - this one from February last year:

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In 2008, Haydn was diagnosed with liver cancer - almost certainly as a result of the Hepatitis C virus. Despite chemotherapy, the cancer progressed and eventually he qualified for a liver transplant, though only one known to be infected with Hepatitis C. Doctors operated. Haydn seemed to be doing well.

Then, six months ago cancer re-occurred in the new liver. Haydn underwent aggressive chemotherapy and the tumour responded.

Then last week, he was told he has a new tumour. This one has grown to 7cm in just six weeks - that's fast. Haydn now has to come to terms with knowing that in a worst case he has six months to live... at best, a year.

Haydn used to delight in following the twists and turns of the latest government move. Now friends note that his famous sense of humour is harder to tease out.

Political niceties over debating time seem pretty unimportant as he waits for the latest hospital report. He says he wants to die without the anxiety that Gaynor will struggle financially.

Even the usually mild mannered Haemophilia Society has written to Mr Brown after his show of emotion, seeking a meeting.

The society says that of the 4,670 haemophiliacs infected with viruses from NHS treatments close to 2,000 have already died. Those left alive want to tell the prime minister their personal, tragic stories, and why they're not happy with the government's response to the Archer report.

They believe they are in this position because of a series of blunders and misjudgements within the NHS, by successive governments and their officials - for whatever reason.

Haemophiliacs like Haydn don't have much energy left to campaign, nor the time to wait on parliamentary procedure.

Comments

  • Comment number 1.

    Susan, I should like to applaud you for once again taking the initiative to cover this crucial issue. I say this particularly as today, such an important day for our small community, I have felt utterly let down by members of the press. At least two people I know had already booked interviews, both involving a degree of travel, and both interviews were cancelled at the last moment. Undeterred, two haemophilia sufferers made their way to Westminster, prepared to talk to anyone following the outcome of today’s proceedings. Not only were the press utterly disinterested in this, the most human of stories, but strangely enough they all gave exactly the same reason – that Government had not said they would not implement the Bill, simply that they felt they could not do so without a debate. How very odd that they should all think the same – flawed – way! Well done, Susan, for having the guts to tackle this travesty of justice yet again.

    To comment under this illusion that your colleagues are apparently under, I would only say this: We can prove, with Hansard evidence just how many times Members of Parliament have called for a debate on this issue. We can prove how many times Cabinet ministers have hinted at the possibility of one, and we can prove that – despite willingness from all parties to discuss the issue, there has been no House of Commons debate! In my opinion there never will be within this parliamentary session! Why? Because the Government knows full well the support we have from members of all parties and it is scared of losing such a debate on an occasion when it cannot hide behind the Whips Department who are themselves supporting a Treasury that simply does not want to pay out for the damage – the untold damage – that has been caused to these people.

    As secretary of TaintedBlood, I hear stories every day that make me want to weep. Only this week, for example, a gentleman told me how all he wants is to be able to heat his house well enough not to have to wear a hat and gloves indoors. He wants his breadwinner wife to be able to give up the job she hates and which makes her cry several times a week. Then there is the gentleman tonight who, having being infected by contaminated Factor Vlll when he was a serving member of Her Majesty’s armed forces, said: ‘I can proudly say that I did not serve my country with the same self serving cowardice that you have shown in this matter.’ I could give you dozens of such examples.

    Then of course there is Haydn, a man you know very well. He is a brave, strong, clever man with a sharp wit and a kind soul. He is a man I am proud to call my friend and he is dying. When my own husband died in 1991 as a result of contaminated NHS blood product used to treat his Haemophilia, his last words to me were: ‘Is it sorted?’ Like Haydn, he had fought to his dying days for truth and justice and in his dying moments he wanted to know that he had won. For the one and only time in all the many years I knew him (First as a work colleague, then as a friend, then as my husband.) I lied to him and said that yes, everything was ok. I pray to God that Gaynor is never in the same position with Haydn.

    I have only one small criticism of your blog – the title. I feel that, sadly, it would have been better entitled: ‘Time Running Out for haemophiliacs’. This government, like every one for the last thirty years, has blood on its hands. Its greed and its cowardice know no bounds. Its shame will follow them through history.

  • Comment number 2.

    LAW OF INTENDED CONSEQUENCES.

    Have we not been here before? Asbestosis - Gulf War Syndrome - etc? Just another proof of systemic corruption in our culture.

  • Comment number 3.

    Such a truly terrible occurrence. It makes you embarrassed to be part of a country that 'calls' itself great. The fact contaminated blood largely supplied by prison donors from the USA was allowed to be given untreated to so many for so long including myself is a travesty. However, almost more appalling than that is the successive failure of governments to act on the issue, even though evidence has mounted that these people lives have been unnecessarily destroyed by what was in majority an avoidable tragedy. The implications of using this blood for treatment were documented in the 1970s, how then am i affected when i was born in 1981? Its 2010 now, have our politicians not evolved at all in 30 years?

    This issue is simply about money, there are so very many infected and the damage so huge that payout actually become a disincentive for government action. The truth is such payouts would not affect the grand scheme of things but would simply be an unwanted expenditure that is being avoided over and over again in the most brutal way.

    All i can say to the government is that the infected do not want to attribute blame, they just want to die knowing that the 20-30 years of earnings they and their families have been denied are to be replaced by compensation to ensure there families are able to live above the poverty line for the time the infected have left and after they have perished. Family is the only thing some of these people have. Many haemophiliacs were children at the time of infection and recent quotes form both David Cameron and Gordon Brown suggest they know how important children are to the future.
    Why in this case do children with haemophilia not matter?


    Why then have the conservative refused to commit to backing the bill unlike the Lib Dems?

    How can Gordon Brown publically shed tears for his own daughters life when behind close doors he turns his back what is left of yesterdays infected generation – he knows, he was emailed personally before the second reading of this Bill by the haemophilia society.

  • Comment number 4.

    Susan, thank you for your continued support in publicising this tragedy.

    It is interesting to see that by delaying this bill as well as continuing the plight of those affected, it also has the wider implication of extending the period that the general public are exposed to the potential repeat of this disaster - not just a group of less than 5,000 people, potentially we are talking about anyone who could require a blood transfusion or blood product.

    The Bill includes provision to increase the testing and treatment of donated blood to remove things like vCJD. UK blood is not currently safe to the extent where some blood product continues to be imported from the US. The UK is the world capital of vCJD and yet the Government are actively delaying legislation that would resolve this issue.

    The fact that blood product continues to be imported from US means that it comes from paid donors, exactly the group of people who were the high risk groups whose blood infected haemophiliacs with HIV and/or Hepatitis C.

    When will the politicians learn ? When will the politicians do the right thing ?

  • Comment number 5.

    Mike you ask the question "When will the politicians learn ?" I can assure you that Gillian Merron Minister of State for Public Health has learned the lessons form the disaster that lead to the infection of thousands of people with HIV and HEP C, and I have proof in the form of a letter dated July 2009 she states and I quote "I want to assure you that we take our responsibility to guard the safety of the blood supply extremely seriously and that the lessons have been learned from these tragic events." But I find it hard to believe that the lessons have been learned, when you find out about the governments heal dragging when it comes to testing UK blood donations with the Amorfix vCJD test. And failing to introduce the P-Capt Prion filter that could make all blood transfusions safe, which has been available since 2006 yet will not be used widely until 2012/3.

  • Comment number 6.

    I am sickened by both Cameron and Brown airing their grief to get votes whilst ignoring the grief of this small community who have lost children, or childhoods, fathers, uncles etc, through having to trust the NHS. It is absolutely disgusting that governments keep ignoring this issue, waiting for the last to die and hoping it will all go away? Merron, Brown, Burnham just do the decent thing and recompence the dying and bereaved, be honest about it, for once, try honesty. People respect a hands up, made a mistake, sorry, no one respects a wriggling, back turning, blame switching, mouth of lies and meaningless slime parliament.
    Susan, can you help find these people a celebrity spokesperson? This should be shouted from the rooftops, but people are too scared to go public if they are infected for various reasons.
    When I was young we had blind faith in doctors (thankfully now it is easier to question our treatment), but there is no doubt in my mind some, not all, but some doctors knew exactly what they injecting into these people. I don't know how any of these people can sleep at night, the victims can't.
    Thanks Susan.

  • Comment number 7.

    Despite the obstacles placed in our way we will continue to fight for justice.

  • Comment number 8.

    Many thanks to Susan Watts for her continuing perceptive and persistent journalism on this tragedy.
    One element that deserves more media attention is the Penrose Inquiry in Scotland which has full judicial powers under the Inquiries Act 2005 and is fully supported and funded by the Scottish Government. The Penrose Inquiry team are very keen to hear from anyone who was affected in Scotland and I certainly found them professional and sensitive when I submitted my own statement.
    The Inquiry is significant across the whole of the UK because, unlike Archer, it has full judicial powers. The matters it will examine include the systems in place for blood product collection, treatment, licensing, testing and preparation. The Scottish National Blood Transfusion Service have in the past clarified that "national policy in matters relating to donor testing were the responsibility of UK Ministers" and "donor testing and exclusion policies were formulated on a UK basis".
    The Penrose Inquiry thus deserves more UK wide attention than it has had to date as it will be able to access previously unavailable sources.

  • Comment number 9.

    Post #6 ( letter I sent to my MP )

    http://www.bbc.co.uk/blogs/newsnight/susanwatts/2010/01/judgement_day_for_public_trust.html

    My Reaction to Responce From Minister

    Thanks for sending me a reply to my letter on ACT ON CO2 from the said minister Khan. It would appear that the eco-fascists have hijacked transport science and turned it into a quasi-religion. The 1980s research I originally quoted about air resistance falling above a given speed seems to have been erased from history, perhaps like the medieval warm period the climate scam scientists attempt to hide.

    Its perhaps hardly surprising since aerodynamics became a marketing scam in the 1990s, but at the end of the day its only 0.00 something even on a " square " 1960s designed car. Unfortunately you did not send me alleged fuel map graph to back up their low RPM low fuel consumption assertion. I suspect that said " unnatural " reduction of fuel consumption comes with a " bill ", probably a massive increase in NOX emissions.

  • Comment number 10.

    If any iresponsible individual was found guilty for knowingly infecting one other person with HCV and/or HIV that person would be commiting a criminal offence and would serve time for their actions, in gods name how can a so called responsible British Government which has caused infections to almost five thousand of its citizens with HIV HCV and many other viruses leading to the deaths of nearly two thousand of those people get away with it, with no investigations no charges no convictions and no prison time served by anyone ? they are quite literaly getting away with not just murder but mass murder.

    It is an outrage that a British Government before doing the right the honourable and the just thing has to be either embarrased into doing it as proved by Joanna Lumly's support for the Gurcas or has to be dragged kicking and screaming into the law courts as it looks like we will have to do.

    I along with many other was disgusted to see that Gordon Brown has not even had the decency to respond to Haydn Lewis's letter in which Haydn ask's for an opportunity to see the Prime Minister it was further incredible to then see that Gordon Brown took time out to contact David Beckham to convay his sadness for his hurty ancle if this is the calibre of Gordon Brown you can keep him !

    we all thaught after the MPs expenses scandel things could not get any worse how wrong we were. I believe the issue of contaminated blood could become a major election issue, and I hope it does

    Glenn From Hull


 

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