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The Terms of Reference for the Inquiry

The Terms of Reference of a Statutory Public Inquiry define the scope of the Inquiry’s investigations. The Chair will be consulting on the Terms of Reference in the next couple months. This is the first important step in the setup of the inquiry and it is vital that the whole affected community has input.

Effective Terms of Reference are key to a successful inquiry and the whole community must be confident the Inquiry will examine fully all issues that are important.

We have collated a “list of subjects” drawing on the Archer, Lindsay and Penrose Inquiries, the Scottish Joint Position Statement and from information gathered so far from our members. This is very much a working document and we would like your opinions, additions, edits and comments.

We will use all comments to help shape this document and to help the Inquiry understand what the community wants. Please feel free to share widely so this can reach as many people as possible who have an interest.

Please send any comments to publicinquiry@haemophilia.org.uk.

Jefferson Courtney

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7 Comments

  1. Carol Grayson 6 months ago 26th February 2018

    I welcome the Haemophilia Society’s interest in relation to the terms of reference but point out that only those that have campaigned over the last 3 decades on contaminated blood with both the lived and research experience can know what is truly important regarding the terms of reference. We must remember that a significant amount of evidence was omitted from both Archer and Penrose due to the fact that liability was not in the remit. Lindsay though useful, refers to the situation in Eire and there are many additional factors which happened here that did not occur in Eire, the situation here has many added complications that should have been addressed but weren’t. If we do not get adequate terms of reference for the new Inquiry, it will be a complete waste of time and money as the key evidence will once again not be seen and once again justice will be delayed and denied to victims and their families. Government have previously used this situation to falsely state that there was no evidence to show liability in previous inquiries rather than being honest and stating evidence showing alleged liability was NOT INCLUDED in any previous Inquiry! Long-term campaigners have drawn up their own terms of reference based on issues as they rose before, during and following contamination with deadly viruses.

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  2. STEPHEN MARTIN-HANLEY 6 months ago 1st March 2018

    Might be useful to ask inquiry to looks at how primary victims have suffered through the welfare system. Through the years. Including present day. The Government put victims in the position of having to rely on welfare yet penalised victims for doing so. A catch 22 situation for the victim.

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  3. Carol Grayson 5 months ago 23rd March 2018

    And in addition to what Stephen Martin-Hanley has stated to examine how the bereaved partners of haemophiliacs have suffered abuse through the benefits system, many now in poor health themselves after years of caring 24/7 for sick and dying loved ones with little support. So many mistakes have been made through inadequate assessments overturned on appeal but not before grieving widows have been wrongly left on nil income for 6 months at a time…

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  4. Graham Knight 4 months ago 7th April 2018

    As someone who contracted Hep C and knows from experience the false talk many politicians use when twisting and turning to avoid A) answering B) giving away ‘confidential (in their eyes at least!) information. C) Avoiding meeting THEIR responsibilities for the grief, trauma and premature painful deaths they have caused. As well as the consequences to our loved ones, who have given so much to care for us. Our lost expectations of our lives before this shameful tragedy hit ….

    For my part the most worrying thing is not me, and my health, however long I last. But what happens to my wife after I’ve gone. Many of the resources that I have now and the purgatory we have gone through to get them, ends when I do. We are not scraping by. But the payment my wife gets as a final, is, lets face it, is enough to plant me. Little is left. Hardly the way anyone would wish to leave their loved ones, especially after all the stress, strain and worry, when I’m ‘unwell’. Or waiting for the next bus to come and run over us.

    Some good points have been raised here. However, I would urge anyone or group who has firm proposals to work together, rather than carry on saying “my/our experience goes back to…. or ‘you don’t understand…. and so on and so on.

    It is only by working together that everyone will come close to getting as many answers as possible from this inquiry.

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    • Carol Grayson 4 months ago 10th April 2018

      Graham, one of the issues for the Inquiry must be alleged illegalities with the Trust change over to NHS BSA and failure to address the “loss and needs” of both infected and affected bereaved partners. Unfortunately some campaigners are quite short sighted and even a small increase in money for has encouraged people to forget their longer term security and that of their partners which is why sadly govt were able to pull the rug from under their feet without much opposition. Its good to hear your concerns not only for yourself but valuing your wife. Misogyny has often interfered with fair process, your wife is a person in her own right and although many wives have given years of love and 24/7 care it is not without significant personal losses also. When I first fought for partners and widows I was faced with men telling me that it was “the duty of a wife to care for her husband” and we “shouldn’t expect our losses to be addressed”. If they say that now they could well end up in court! I never heard that said to a man… There can’t be any inadequate “final” payments however when basic legalities have allegedly been overlooked and I for one have already raised this with members of the Inquiry team! Payments to infected and affected must be based on loss and need which to date have NEVER been assessed! Regarding divisions, the history of that goes back a long way was a calculated effort on the part of some. These divisions will not go away with addressing how that happened and who is responsible so rather can cover them up they should be viewed as part of the ongoing damage to our community!

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      • Graham Knight 4 months ago 12th April 2018

        Hi Carol

        You will not get any arguments from me on any of your points. I’ve always worked on the principal of, I’m not going to get out of it, so I will have to get on with it.

        Regarding partners/ wives/ husbands/etc. they have stayed the journey on this and misplaced misogyny is unfortunately still rampant in many cases, and not helpful. That doesn’t and shouldn’t be used as an excuse for them not to be treated in a fair and equitable way.

        Keep up the good work on your side and I will try and do my bit to the best of my ability.

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        • Carol Grayson 4 months ago 18th April 2018

          Thank-you Graham I really appreciate that you care what happens to partners and widows. Those who take the line of misogyny and think women have no use should read this article from the recent Guardian article which is all the documents I put out in 2006 in my dissertation on Contaminated Blood and the 2007 BBC Newsnight where I was the official researcher to keep the campaign going. Although this misogynist journalist Simon Hattenstone has rehashed my work and hasn’t the decency to reference my research, (and he has done this to me before, official complaint to be filed)… it at least means we are getting somewhere as copying is a form of flattery as they say. What deeply disturbs me though is that although the Haemophilia Society are publicly praising the Guardian article they themselves BLOCKED my research, these very same documents for over a decade wasting valuable time while people died. This should be investigated. By doing so the Haemophilia Society helped the government cover-up alleged wrongdoing on a massive scale. The dissertation was only put up on the Haemophilia Society site in 2017 with the arrival of new staff though I had earlier had these documents returned to government via my lawyer as Dept of Health had destroyed their own. The documents were released through the DOH website, then the National Archives at Kew where people now access them through FOI requests, once again without referencing the original source. If the Society really cared about widows they should be asking the Guardian why they have failed to reference a widow who is also a victim here and wrote her research in the months that immediately followed the death of her husband, won 2 awards but was silenced! https://www.theguardian.com/commentisfree/2018/apr/17/contaminated-blood-scandal-haemophiliacs-hiv-hepatitis-c

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