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Can Ken Clarke provide justice sought by UK’s ignored haemophiliacs?

Haemophiliacs will tomorrow deliver wreaths to the doorstep of 10 Downing Street and the Department of Health to seek justice from the new coalition government over the use of contaminated blood by the NHS 30 years ago which has led to the deaths of 2,000 people who were infected with HIV and Hepatitis C. It is estimated that 4,700 people were infected in the last three decades.

I first  wrote about the plight of haemophiliacs four months ago after bumping into their campaigners in Westminster’s central lobby when they were meeting with MPs. They now hope to gain the support of Justice Secretary Ken Clarke, who was Health Secretary at the time when patients were unknowingly infected with contaminated blood, imported from the USA. BBC Science journalist Susan Watts has done a tremendous job in plugging their plight.

The eminent medic Lord Winston describes this as “the worst medical treatment disaster in the history of the NHS”.  Campaigners refer to this largely avoidable tragedy as the “haemophilia holocaust” in recognition of the destroyed lives of a generation of people with this hereditary bleeding disorder. It’s really too awful to fully comprehend that this really happened. If it had happened today, would it be allowed to be ignored in the same way?

These families deserve justice and answers to questions about what happened, and why. Imagine if it was someone you loved you had been infected this way, and their life had been destroyed after they had placed their faith in the NHS treatment they needed to recover from an illness, but instead, inadvertently, signed their own death warrant.

I hope Ken Clarke listens – and meets with the Contaminated Blood Campaign Coalition – and that he uses his new influential position to give them the justice they deserve.

Do watch this compelling video the action group has made which features Lord Owen and Ken Clarke.


17 Comments

  1. Graham James

    I am a 53 year old mild haemophiliac who was infected with hep c and had interferon treatment for this. Has anyone been told that the blood that they were given was also infected with C.J.D as I was told this a couple of years ago. At the time i was told not to worry but i was told not to worry about hep c and look what happened

    Graham

  2. anthony pywowariw

    Hi. i suffer from haemophilia`A`.i have been paid compensation of £20,000 in sept 09, i read recently about a gentlemen called david bailey who with MP david tredinnick is fighting for more compensation in line with ireland.I think this is fair to fight for more as it has blighted people`s live`s for a long time and for some people it still is. let`s get the government to pay more, even if they have been paid already. Good luck to those mp`s and campaigners who are campaigning.

  3. Carol, thanks for the update, and good luck. I was pleased to help on this important issue and wish you the very best.

  4. Carol Grayson

    Ellee here is my latest blog on haemophilia campaigners meeting with Anne Milton on 22nd July…entitled “Gender Justice”

    http://www.ctrlaltshift.co.uk/article/blog-carol-grayson-exclusive-gender-justice

    Thanks for covering haemophilia issues

    Carol Grayson

  5. Carol Grayson

    Ellee, my latest blog “A Bloody Sucess” covering the haemophilia lobby of parliament on contaminated blood… Carol Grayson

    http://www.ctrlaltshift.co.uk/article/blog-carol-grayson-bloody-success

  6. Really a shame that more progress hasn’t been made. Money is out there but it’s obviously flowing to other medical research areas.

  7. Thanks for your support Ellie and thought you might want to check out news bulletins over the weekend on BBC Hereford and Worcester. I have recorded for them today and they too are following the blood scandal. Also Central TV on Sunday will be recalling events of the week by Alison Mc Kenzie and the programme goes out at teatime. i think it is called Alison’s round up and it will feature the Demo on Wednesday
    Regards Colette Wintle

  8. Philipa

    Well done Ellee on an excellent post and on your efforts to help. Kate and her husband have my sincere sympathies. I cannot imagine her anger at the cavalier attitude of the health service (which is sadly guilty of such crimes as well as great sucesses). I wish we could hear more from ‘edd’ as I don’t quite understand the detail of his annoyance and would like to.

  9. Carol Grayson
  10. Carol Grayson

    Links to 92 photos of a very successful lobby

    http://www.smugmug.com/gallery/12764533_3Cb24#919843448_PHrNm

  11. Carol Grayson

    Thank-you Ellee for covering the plight of haemophiliacs and their ongoing campaign for justice…We will fight on until an injustice is acknowleged and until the government implement the full recommendations of the Archer Inquiry Report…

  12. Carol Grayson

    Letter from DOH to myself re Ken Clarkes papers…

    DOH LETTER TO ME RE KEN CLARKES PAPERS…

    Our ref: DE00000509190

    Dear Mrs Grayson,… See more

    Thank you for your email of 3 June requesting, under the Freedom of Information Act (FOIA), all of Kenneth Clarke’s papers related to decisions on haemophiliacs and the response to the haemophilia and HIV litigation during the late 1980s.

    I have to advise you that at the present time, we are withholding the requested information under S22 of the FOIA, which exempts information intended for future publication from the general duty to disclose. When the Department recently released the July 1990 memorandum from the former Chief Medical Officer Sir Donald Acheson to Kenneth Clarke on the subject of the HIV litigation, it made a commitment to release additional ministerial papers on the subject. Therefore, the Department is currently in the process of preparing all of the available ministerial papers relating to the HIV litigation for publication. This release will of course, be made subject to the safeguards concerning personal data provided for in the Data Protection Act. This will necessarily take some time because there are a significant number of documents, but we anticipate that they will be ready for release in the Autumn.

    Section 22 is also subject to the public interest test. We have considered this and, given the existing commitment to publish all of the available Ministerial papers on this issue, we have concluded that the public interest in withholding the information pending publication outweighs that in releasing it at this time. We recognise that in general, there is a strong public interest in information being made as freely available as possible. However, Mr Clarke was not the only Government Minister involved in decision making on the HIV litigation, so releasing his papers in isolation would only provide a partial record of events, which could potentially lead to an incorrect understanding of these events being drawn. The Department therefore believes that it is in the public interest not to release Mr Clarke’s papers in isolation, but rather to release them with all of the other Ministerial papers so that they can be seen in context.

    All relevant papers from the period 1982 – 85, when Mr Clarke was Health Minister, have been published on the Department’s website.

    If you have any queries about this response, please contact me. Please remember to quote the reference number above in any future communications.

    I hope this reply is helpful. If you are dissatisfied with the handling of your request, you have the right to ask for an internal review. Internal review requests should be submitted within two months of the date of receipt of the response to your original letter and should be addressed to:

    Head of the Freedom of Information Team
    Department of Health
    Room 317
    Richmond House
    79 Whitehall
    London
    SW1A 2NS

  13. In response to Richard’s comment of;

    “This is a tragedy, and an ongoing one.

    However, a few points:

    1) Since 30 years ago? HIV was discovered in 1983, tests for it are later than that.

    2) Hep C is even later: its existence was proven in 1989.

    I repeat, it’s awful that it happened. But if your technology cannot detect the infection, and you have a haemophiliac whose life might depend upon another unit of blood, the decision’s not so easy.

    HIV and Hep C may have not been identified in the 70’s HOWEVER, warnings were given to the Department of Health that these blood products were NOT safe.That these products contained viruses that had not yet been identified. Despite these warnings the Dept of Health ignored this information and continued to use these blood products, instead of using alternative blood products. Why? Because using blood products from the US, from prisoners was cheaper.

    My husband was infected with Hep C AFTER these warnings. If the dept of health had listened and used the “safer” treatment, my husband wouldn’t be infected with a deadly virus today.

  14. While I’m not personally effected by this, I appreciate your advocacy for justice. Thanks for keeping me updated

  15. Here is the press release sent to me by the CBCC giving full details about their march in London today and lobbying in Parliament, as well as the tragic background behind their story.

    HAEMOPHILIA HOLOCAUST – PRESS STATEMENT FROM CONTAMINATED BLOOD CAMPAIGN
    COALITION

    The Contaminated Blood Campaign Coalition (CBCC) which represents all
    haemophiliacs infected with HIV and hepatitis C through their NHS
    treatment and their families will be holding a lobby on 30th June at
    Westminster.

    The infection of 4,700 haemophiliacs with blood borne viruses resulting
    in 2,000 deaths is classed by Lord Winston as “the worst medical
    treatment disaster in the history of the NHS”. Campaigners refer to this
    largely avoidable tragedy as the “haemophilia holocaust” in recognition
    of the destroyed lives of a generation of people with this hereditary
    bleeding disorder.

    Campaigners dispute the government’s claim that haemophiliacs were
    “inadvertantly” infected as no government public inquiry has ever been
    held. In a recent letter to activist Colette Wintle (infected with
    hepatitis C) Parliamentary Under Secretary of State for Health, Anne
    Milton does now acknowlege that “people were ‘harmed’ by the very
    treatment that were supposed to improve their lives”.

    Haemophiliacs welcome the recommendations of Lord Archer of Sandwell in
    his report as part of a privately funded public inquiry and ask that the
    Coalition Government implement these without further delay.
    Recommendations include compensation on a parity with Ireland,
    recomendation 6 (h), a campaign initiative originally set up by
    haemophilia widow and researcher Carol Grayson in 1996 who argues that
    “the economic state of the country should not be a barrier to justice.”
    Letters provided to the Department of Health in 2004 written to Ms
    Grayson by the Irish government and Dublin lawyers showed that Ireland
    paid out on the grounds of “extraordinary suffering” without accepting
    legal liability and these documents were repeatedly ignored by the
    government. This fact was recently supported by a Judicial Review legal
    ruling against the Secretary of State for Health. Justice Holman was
    quoted as saying “I am satisfied that the government approach to
    recommendation 6 (h) has been, and remains infected with error”.

    CBCC Chairperson Dave Tonkin stated that:

    “The government has mislead the haemophilia community for many years and
    we hope the forthcoming release of papers belonging to former Health
    Minister Kenneth Clarke will shed new light on government thinking. The
    government must now start to negotiate directly with campaigners on the
    recommendations of Lord Archer as haemophiliacs are not going away”.

    The Liberal Democrat Party wrote in their pre-election manifesto that:

    “It is deeply disappointing that the government has failed to provide
    adequate support for those affected by the contamination of blood
    products with HIV. A Liberal Democrat government will establish a
    working party involving patients to determine appropriate levels of
    financial support”.

    Former Shadow Minister for Health and Social Care, Stephen O’ Brian
    (Conservative) expressed his support for justice in a recent e-mail to
    Ms Grayson:

    “This is an issue with which I have been acquainted through constituency
    cases since my first election in 1999. It is something I have campaigned
    on, and continue to do so within the health team, and revisiting Lord
    Archer’s recommendations is a key priority for me should I be fortunate
    enough to serve as a health Minister in a Conservative government”.

    The Rt Hon Lord Morris of Manchester, President of the Haemophilia
    Society will reintroduce his Contaminated Blood Bill to parliament in an
    attempt to put into legislation the recommendations of the Archer
    Inquiry.

    The CBCC and supporters will meet at 12.30 pm on the 30th June at
    Trafalgar Square to march to parliament. The day will include a delivery
    of wreaths to Downing Street and to the Department of Health (1pm) to
    remember the deceased and there will be lobbying of MPs at the House of
    Commons (2pm)

    ENDS

    Notes:

    “When is a Disaster not a Disaster”?
    http://www.ctrlaltshift.co.uk/article/feature-when-disaster-not-disaster

    Archer Inquiry http://www.archercbbp.com/

    ESRC Research/Michael Young Prize, Carol Grayson
    http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/about/CI/CP/societynow/
    issue4/blood_trade.aspx

    Contaminated Blood Bill
    http://services.parliament.uk/bills/2010-11/contaminatedbloodsupportfori
    nfectedandbereavedpersonshl.html

    Haemophilia Society’s Campaign
    http://www.haemophilia.org.uk/get_involved/Contaminated+Blood+Campaign

    Judicial Review (ruling, where the governments decision not to
    compensate on a level with Ireland was challenged)
    http://www.bailii.org/ew/cases/EWHC/Admin/2010/765.html

    The Liberal Democrat Manifesto
    http://network.libdems.org.uk/manifesto2010/libdem_manifesto_2010.pdf

    Scottish Judicial Inquiry into Contaminated Blood
    http://www.penroseinquiry.org.uk/

  16. Well I’m a mild haemophiliac whose life was never in jepody so why give me the blood at the age of 7 and risk my life and others.don’t leave comments when you don’t know all the facts.trust me when I say if it was you or your children that died or had your life destroyed by this then you would not leave such a comment

  17. Richard Manns

    This is a tragedy, and an ongoing one.

    However, a few points:

    1) Since 30 years ago? HIV was discovered in 1983, tests for it are later than that.

    2) Hep C is even later: its existence was proven in 1989.

    I repeat, it’s awful that it happened. But if your technology cannot detect the infection, and you have a haemophiliac whose life might depend upon another unit of blood, the decision’s not so easy.

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