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Responses to Questions

There have been several questions asked of The Haemophilia Society and we would like to address some of these.

 

The Society does receive funding from a range of organisations and like many charities working in the healthcare sector, including haemophilia societies across the UK and Europe, some of that funding comes from pharmaceutical companies. This funding helps support projects such as the Newly Diagnosed Weekends, Talking Red and the Youth Ambassador projects.

Without this funding, it would be difficult for us to run many of these programmes which we feel are important to support our members. It is made clear which pharmaceutical companies have supported the programmes we deliver.

 

The Haemophilia Society receives no government funding currently. The Archer inquiry report included a recommendation that the Government should ‘secure the future of the UK Haemophilia Society by adequate funding’. As a result, the Department of Health provided a grant of £100,000 per year for 5 years finishing in 2013/14 to help us provide services to our members. We no longer receive any Government grants.

The Haemophilia Society has apologised publicly for any actions which contributed to the contaminated blood scandal in the past and has posted a written statement to that effect in March 2017 which is available on our website.

The Haemophilia Society accepts and welcomes scrutiny of all past events. Many of the trustees of the organisation at the time lost their lives or had family directly affected by this tragedy and it is in the best interests of everyone that the truth is uncovered.

 

The Haemophilia Society believes it has a responsibility to support its members and the wider community affected by the contaminated blood scandal throughout the inquiry and we aim to consult with our members to ensure we do this to the best of our ability. We accept that not everyone wants to be represented by us during the inquiry and we respect that decision, we hope that does not impact on people’s choice to remain members. We are the only UK wide charity here to support the bleeding disorder community through a range of events, activities and advocacy services and hope that people will feel they can still access these services.

 

Debra Morgan joined The Haemophilia Society as our public inquiry lead in December 2017. Debra has previously worked in the pharmaceutical industry for over twenty years for a range of pharmaceutical companies in a variety of roles, none of these companies supplied plasma products or blood products. Her experience working for the pharmaceutical industry brings a working knowledge of the interactions between the pharmaceutical industry and patient organisations which we believe will be valuable in the upcoming inquiry.

 

A number of our members have contacted us since the inquiry was launched asking us what to do with any evidence they hold. We had advised them to keep it safe but suggested if they wished they could share it with us to assist us in preparing for the inquiry. This productive engagement has been helpful as we prepare to engaging with the upcoming discussions on the terms of reference for the public inquiry.

In our latest email to members we outlined this process and created a new email address publicinquiry@haemophilia.org.uk for members to contact us with questions or to share information that may assist with our engagement in the inquiry.

We have been informed that clients of Collins solicitors have been contacted to advise them not to provide any evidence to The Haemophilia Society. If anyone is concerned that privilege might apply to evidence they hold they can instead submit it directly to the inquiry or via other legal representatives.

However, many of our members have looked to us for guidance in relation to evidence they hold. So for clarity, The Haemophilia Society intend to provide all information they hold to the inquiry. If members are happy to share evidence with us, we will ensure it is submitted to the inquiry.

We have yet to appoint a legal representative but, they would also need to have access our archives and other information we hold, which we are therefore seeking to digitise. Any legal representative would need to have a license to practice in the UK and privilege would apply as normal in relation to them and their clients.

Jefferson Courtney

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7 Comments

  1. Paul bateman 5 months ago 1st February 2018

    Hi has the H soc/inquiry/Collins access to all documentation submitted to the archer inquiry? The inquiry results are on the Internet, but I was more concerned about the amount of documents submitted to that inquiry. My main issue that involved the society was the pamphlets “haemfacts” from the 1980’s. These were distributed by the soc. to members. 1984 had an edition written by dr. christeen lee which advised members to continue using factor, and she stated that only 1 in 1000 were at risk of aids. It was 1 in 3. She, or the society have never commented (or apologised) on this. I had an original copy (which my late mum saved), but this was submitted to the archer inquiry. I never got it back. Does the society still have a copy or do you know where the archer documents ended up? This implicates the society in bad advice to its members historically. I do accept that the society today is not responsible for events that happened over 30 years ago but it may be good for the inquiry to know who the individuals were on the trustees board and management of the society at that time. Many thanks

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    • Dorothy and John 4 months ago 12th February 2018

      Paul,

      We cannot find any background documentation submitted to the Archer Inquiry. It seems that we have to read between the lines of the report to glean any information about the documentation which may have been submitted. However, it may be that information provided was selective in order to protect clinicians and, possibly,the NHS/politicians of the time from possible prosecution.

      One further question – how did contaminated NHS blood stocks, earmarked for disposal, find their way into the hands of unscrupulous blood brokers, such as David Mills and others (QV: The Times and Private Eye)?

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      • Colette 4 months ago 22nd February 2018

        I think it is important to clarify that the Archer Inquiry was a privately funded Independent Inquiry and the documentation supplied to it by key witnesses of which I am one, cannot be accessed for reasons of privacy and data protection. That information was submitted privately for Lord Archer’s perusal and as the inquiry had no legal jurisdiction, he was unable to use evidence of negligence in the report linked to NHS, doctors or politicians . Legally I believe that only those who gave documents to the inquiry would have the right to access them again. The official report is the only available material available now and the domain is in the ownership of myself and Carol Grayson following a two year battle to resurrect it and make it available to the public after it disappeared online for over two years.

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      • Colette 4 months ago 22nd February 2018

        I would just like to clarify that the Archer Inquiry was a privately funded inquiry and the documentation submitted by key witnesses was made available to Lord Archer and his panel only. Due to the limitations placed on the Inquiry as it was non judicial , much of the documentation showing alleged negligence could not be used in the final report. The report and testimonies are now available online after a two year battle by myself and Carol to get it reinstated for public accessibility following the discovery a two year period of absence online! Other than the main report any other material remains the private property of the contributors and cannot legally be accessed due to data protection and privacy rules.

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  2. Carol Grayson 4 months ago 22nd February 2018

    You have to remember that Archer was a PRIVATE Inquiry and the government took no part in the Inquiry despite being invited to do so, they could not be bothered to cross the road and participate or hear witnesses. So neither government not others not involved in the Archer Inquiry have any right to access evidence from the Inquiry. To do so would breach confidentiality of those individuals (often infected and affected) who submitted evidence often with specific instructions. I submitted a significant amount of background documents (I understood this was more than any other individual) documents as evidence both as a widow and a researcher (now twice awarded). I would not want any other persons accessing my own evidence, this would breach my confidentiality and I have the right to submit my own evidence. I worked very closely with the Secretary to the Inquiry on a daily basis for months ensuring Archer had key evidence held at that time, though more continues to come to light and gave evidence in person not once but twice on the understanding it was only to be used for the Archer report and nothing else. I also managed to persuade certain key witnesses to attend. Archer had no remit in the Inquiry to find liability so any documents allegedly showing this had to be excluded, this included quite a number of mine which showed alleged liability. This does not mean there was no liability only that finding liability was not in the terms of reference. Archer was also very careful and did not include much actual original documentation in his report due to the restrictions in the terms of reference though referred to it . Colette Wintle and I now own the official Archer website which was officially transferred to us by lawyers as no one else showed any interest or fought as we did for 2 years to maintain the site. The site we hold is the ONLY official Archer site.

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    • John and Dorothy 4 months ago 24th February 2018

      Thanks to Colette and Carol for their clarification of the situation regarding Archer Inquiry documentation. We were aware of the caveats in terms of the Archer Inquiry and, indeed, those of the Krever Report, earlier in Canada, as well as the Lindsay Report in Ireland. In 2002 John Morris, formerly of the Haemophilia Society, asked John if he would undertake what turned out to be a 4-year investigative study into the ramifications of both the Krever and the Lindsay Inquiries. Given that, we were not in the least surprised at the outcome of the Archer Inquiry and, subsequently, outcomes of the Penrose Inquiry. John liaised at some length with the Irish Haemophilia Society during that period. Sadly, John’s health declined to the extent that he could no longer continue with his investigative procedures. We are both pensioners now and will be unavailable to attend the forthcoming discussion groups due to our own health problems. However, we worry that even the forthcoming Statutory Inquiry, once the Terms of Reference are agreed, may well divide the Society Membership over issues of possible criminal and civil litigation which the Inquiry is unlikely to admit. We are truly grateful for all the valuable work you have done on the Society’s behalf and to all the courageous members who gave evidence at the Archer Inquiry. Sadly, there is still a long way to go to obtain both truth and justice for all those affected. It is an old sociological truth that those who hold the relative balance of power in possible confrontational legal matters will always go to great lengths to preserve the status quo and protect themselves.

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      • Carol Grayson 4 months ago 26th February 2018

        Dear John and Dorothy, thanks for your response. Sorry to hear of your health problems and thank-you for your efforts. Indeed the contaminated blood issue has gone on that long that many may not be able to give evidence now in person due to poor health which is very sad indeed. To clarify, Colette and I pointed out to the Haemophilia Society that Lord Warner was misleading the public on the settlement in Ireland in Hansard back in 2004 and approached the Haemophilia Society to assist us. Sadly although I have fought for “compensation on a parity with Eire” (a term I coined in 1994) for over 2 decades, former Haemophilia Society staff failed to support Colette and I and hold Lord Warner to account. My ESRC award winning dissertation was banned from the Haemophilia Society website for a decade but was finally put on the site in 2017. In a nutshell, Lord Warner tried to say that the situation in Eire was different to the here, so our government did not have to pay out “compensation on a parity with Eire” as recommended by Lord Archer of Sandwell in the Archer Report. Warner’s statement was completely false and we obtained personal letters from the Irish Haemophilia Society, Eire government and Irish lawyers in 2004 stating the reason Eire paid out. This was NOT on liability as Warner stated but on the grounds of “extraordinary suffering” based on “loss and need” of each infected individual and family members. No liability was ever proven in court. Eire government thought it would be cruel to force sick and dying contaminated blood victims into court so paid out at compensation levels in recognition of their suffering without going to court. The key evidence collected by Colette and I was used by lawyers of haemophiliac Andrew March to win the 2010 Judicial Review in the High Court and showed the governments “misleading” and “flawed thinking”. If only the Society had got behind us in 2004 and helped us tackle Lord Warner when we first acquired the evidence, victims may have been granted “compensation on a parity with Eire” as Lord Archer intended. It is essential that the Haemophilia Society is now honest and transparent about past mistakes and does not try to censor those who speak on this. Archer listened carefully and in fact echoed my recommendations re Eire, instead justice was delayed and remains denied! Hope this helps clarify the truth of the situation. Archer was also in favour of scrapping the Trusts BUT only when proper compensation was paid to each victim. It is allegedly illegal to scrap the Macfarlane Trust without going back to both solicitors for government AND haemophiliacs as this was under a LEGAL agreement signed in 1991 under Justice Ognal and therefore differs for example to Skipton. Once again we asked the Haemophilia Society to raise questions on this regarding alleged illegalities. I managed to speak to one of the original solicitors for haemophiliacs and he was very shocked that the Macfarlane Trust was being scrapped without anyone contacting him to ensure the rights of haemophiliacs and their families are protected for life!

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