Campaigners hand in letters and a wreath for the dead at no 10
This week an article is expected to be published in the Daily Mail on the Contaminated Blood scandal described by former Health Minister Andy Burnham as a “criminal cover-up on an industrial scale”. That is, the contamination of haemophiliacs with HIV and hepatitis C through factor concentrate treatment given for a bleeding disorder on the NHS.
These plasma products were often imported from the US from high -risk donors on skid-row, the bath-houses of San Francisco and from prisons violating virtually every safety rule in the book and the Nuremberg Code.
Because of the numbers, over 2, 000 haemophiliacs dead and many more harmed, the British government have covered up for over 3 decades, denying victims a public inquiry on the grounds it was “not in the public interest” to know about blood safety. Almost everyone approached including the General Medical Council, the Haemophilia Society, the Charities Commission and the police have either turned a blind eye or been unable to assist haemophiliacs and their families.
To add insult to injury, solicitors representing haemophiliacs have allegedly “thrown” these cases, appearing more concerned about protecting government than seeking justice for families. Lawyers have withheld key evidence from clients, encouraged them to sign a hepatitis waiver deemed in a top QC’s opinion to be illegal due to lack of “informed consent”. Solicitors also used advisors that were on the payroll of multi-national pharmaceutical companies and a note was found stating, “I can no longer lie to my clients.” They also allowed cases to go out of time with one solicitor even struck off for siphoning off money so he could enjoy a lavish lifestyle. On top of this a Trust set up to give some financial support was embezzled by a government worker who created around 20 false profiles of victims so he could collect around £23,000 per victim for himself.
The Daily Mail is expected to use documents and evidence I fought for years to access legally, that became part of my ESRC award winning dissertation written in 2006. The government wrote to me stating they had destroyed their own documents however I found copies of key documents in a solicitor’s office in Newcastle which I returned to government via lawyers in the same year.
The Daily Mail and a new firm of solicitors Collins Law are likely to try to claim “new evidence” allegedly going to the High Court for a group litigation order. The problem is, far from being new, the evidence which is OLD was highlighted in my research dissertation and presented to government and solicitors repeatedly again over the years.
Sadly the government has divided the haemophilia community so much that desperate campaigners, some that only arrived on the scene a couple of years ago are trying to pass off my work as their own. The Haemophilia Society know its happening and have been shown evidence but are limited in what they can do as they must try to support all. There are other cases of abuse against campaigners in addition to that towards me.
So in an effort to put the record straight, here is an open letter regarding the use of my documents. My research was put out for all to use providing they credit the source which is a normal and courteous thing to do. How deeply saddened I am that some campaigners desperate for the limelight have tried to defame my character, bullying, lying and causing great distress to a widow who still grieves for her husband.
The truth usually comes out in the end. Those who steal and plagiarise cannot produce an original paper trail going back years. I suppose these people are to be pitied once my initial anger subsides. For my fellow campaigner Colette Wintle and I its a case of being kicked down 9 times, stand up 10 and I am truly thankful for a friend who has never waivered in her loyalty and support for me.
So on that note here is my open letter to a Daily Mail journalist as I am tired of having to correct media after the event… media that don’t seem to care what they print anymore or who gets hurt. No wonder there is a huge rise in social media and ever more growing distrust of the press!
Open letter to Daily Mail
Dear Sophie, (For the URGENT attention of your Editor or whoever is writing the story on Dr Craske and Diana Walford)
I understand the Daily Mail is running a very familiar story to me tomorrow on Dr Craske and Diana Walford, evidence of the dangers of hepatitis non A, non B (hepatitis C) in factor concentrates, experimentation on haemophiliacs which I covered in my ESRC Michael Young award winning dissertation 2006 Chapter 4 including actual complete letters on this in the Appendix, Chronology.
A concerned individual contacted me as that person recognized documents from my late husband’s litigation files being discussed within a campaign group due to the fact I had assisted the family for over 20 years on contaminated blood.
Here is the full link to my dissertation on the Haemophilia Society website written in 2006 published Jan 2007… Go to Chapter 4 and Chronology for quotes and documents pertaining to Craske and Walford.
SEE ONWARDS from page 49 of my dissertation BELOW for the quotes I anticipate Daily Mail will likely use tomorrow or later this week on Craske and Walford from documents I legally acquired being part of the evidence in my late husband’s 1991 litigation files.
Hepatitis C; Risk-Taking, Research, And Reinfection
Craske et al (1975) and (1978) documented outbreaks of hepatitis in the UK haemophilia community following on from the importation of American plasma products.’ 5 Many 50 haemophiliacs claim that haematologists failed to tell them about the seriousness of being infected with NANB hepatitis and this is a source of a great deal of anger as detailed in the replies to my questionnaires which examine testing for hepatitis C without a patient’s knowledge and consent. Even well into the 1990s some doctors were still claiming hepatitis C was “nothing to worry about” during face to face contact with patients yet for years unbeknown to most haemophiliacs the medical profession had been studying the haemophilia population in relation to this infection.
Walford (1980, see Appendix A8) expressed her concerns a decade earlier and wrote to the UK Blood Products Laboratory that NANB hepatitis “can be rapidly fatal or can lead to progressive liver damage.” Although this letter is referred to in the SSR (p.15, ) in relation to “demand” for factor VIII there is no inclusion of this particular statement as the Government have tried to claim that they were not aware of the dangers associated with NANB until around 1983.
A report from the Haemophilia Centre Directors Hepatitis Working Party 1980-1981 (see Appendix A9) recorded once again the higher risks of hepatitis from imported treatment with “a 4-20 times higher incidence of overt non-A, non-B hepatitis (NANB) associated with US commercial concentrate compared with NHS” (p. 1). The study noted 283 episodes of hepatitis in haemophiliacs recorded by Haemophilia Centre Directors and stated that several patients had experienced repeated attacks of hepatitis and were being re-infected with one or more strains. The report also found that “70-80% of cases of NANB hepatitis were associated with the first dose of concentrate a patient received” (p. 2) yet the parents of small children and adult haemophiliacs recall that they were repeatedly told not to worry about the safety of their treatment and if they were told anything at all, hepatitis was compared 51 in seriousness to being similar to “a dose of the flu.”
The 1980-81 report was also a study of factor concentrate treatment brand by brand examining American treatment and UK treatment as well as the hepatitis infection rates over a 6 year period. There appears to have been a total disregard for the fact that had patients been made aware of the 90% NANB hepatitis risk associated with transfusion of US products (Wright, Times, Nov 12th 1974) they may have wished to reject imported treatment and return to cryoprecipitate made from small numbers of UK volunteer donors. (The risk with UK factor concentrates however was now also starting to rise with an increase in the size of the donor pool). Haemophilia campaigners ask a further question on safety, 4. How could the DOH have sanctioned the use of UK factor concentrates manufactured from large donor pools before processes were developed to eliminate hepatitis viruses?
An international symposium held in Glasgow in 1980 covered the subject of haemophilia
treatment and hepatitis risk whose findings were published in 1982. Craske speaking on
behalf of the Public Health Laboratory stated that “hepatitis B was strongly correlated
with the use of factor concentrates made from large plasma pools and spoke of the
increased risk of infection with NANB hepatitis from commercial plasma products”
(HIV Haemophilia Litigation Claim, 1990, p. 30). Craske noted that “of the 138 cases
where the transfusion history was known 103 cases of NANB hepatitis had been
associated with concentrate but only 7 with cryoprecipitate” (HIV Haemophilia Litigation Claim, 1990, p.52). Craske concluded here that there was “a high-risk from the use of factor VIII or IX that the patient will contract non-A, non-B hepatitis.”
Etc…Etc… and on it goes
Some campaigners are using my research without referencing along with many other documents of mine including the Oxford experimentation “cheaper than chimps letter”, plus the 1975 Garrot Allen letter etc This has happened many times with other documents I collected and increased over recent weeks when I have had to chase up a number of journalists to correct their articles. (Just read chapter 4 in its entirety and all these documents are there). I released the Chimps letter (mentioned by Andy Burnham earlier this year) to BBC Newsnight in 2007 for the documentary where I was the researcher but government would not come on the programme to comment on it. This was one of the key documents I had arranged to be sent to government via solicitors Blackett Hart and Pratt, detailed in our letters and documented in Hansard and out through the National Archives. There are 3 firms documented in my husband’s case as firm partnerships changed over the years.
I am now at the end of my tether, am spending so much time correcting journalists… it is time-wasting and distressing as some are clearly out to defame my character.
In 2006 the only people that had these documents were our Newcastle solicitors and I as government had destroyed their own, and those I shared them with on condition they reference to my dissertation. My research critiqued the so called definitive DOH 2006 Self Sufficiency Report showing what was important wasn’t what was in the report … but what was left out. See media link…
The Michael Young Prize Winners 2009 – Tackling the blood trade
by Helen Pickles, freelance journalist
The Craske, Walford evidence is NOT new evidence but OLD evidence that I handed in to ministers years ago and which was suppressed. These same documents were submitted to Archer Inquiry and Penrose Inquiry though I was informed they could not use those that showed alleged liability as it wasn’t in the remit.
I released the Oxford experimentation “cheaper than chimps” letter to BBC Newsnight in 2007 for the documentary where I was the researcher but government would not come on the programme to comment on it. This was one of the key documents I had released back to government via solicitors Blackett Hart and Pratt, documented in Hansard and out through the National Archives. There 3 firms documented in my husband’s case as partnerships changed over the years.
Here is our Newsnight 2007 posted on YouTube by Tainted Blood… its posted in 3 short parts
Are you aware my documents were lifted by some campaigners from my dissertation WITHOUT REFERENCE and used on the Timeline of Tainted Blood PRIOR to my having them released via the National Archives which I arranged through my solicitor and 3 sets of Newcastle lawyers and these were from my husband’s litigation case? Here is information on the return of documents.
Lord Jenkin of Roding asked Her Majesty’s Government:
Whether the files of papers about contaminated blood products which have recently come to light, some of which have been returned to the Department of Health, provide evidence to support the claims of haemophiliacs that their infection with hepatitis was caused by such blood products.
The Minister of State, Department of Health (Lord Warner): My Lords, we have established that a number of documents that have been disclosed by the department in the HIV and hepatitis C litigation were
24 May 2006 : Column 825
held by Blackett Hart & Pratt Solicitors. It agreed to return the papers to our solicitors, who are now considering them with other departmental officials. Advice has yet to be given to Ministers on the significance of the returned files.
Lord Jenkin of Roding: My Lords, the files that have turned up came from the archives of more than one firm of English solicitors. Given the substantial volume of documents passed to the department’s solicitors—I am told that there are no fewer than 12 big lever-arch files—and the fact that what they have is a small fraction of the material that has been held in solicitors’ archives, and given that the department’s paper Self-Sufficiency in Blood Products in England and Wales was expressly dependent on information that had survived the inadvertent destruction of some 600 of its files, are not there overwhelming arguments for a much more open, independent inquiry into what many regard as perhaps the most serious disaster that has ever happened in the National Health Service?
Copies of lost “blood row” papers found (Guardian, March 21st, 2006)
What is infuriating is that in 11 years despite repeatedly sending documents to government, and writing an award winning dissertation, they have failed to respond, this evidence is not new, far from it… it was part of the generic evidence in my husband’s litigation files in Newcastle in 1991! I have no problem with people using the documents I only ask that they reference. I had a long battle to get access to these documents for my research and to get them released!
Instead of being supported, I have been subjected to a sustained and vicious hate campaign as a grieving widow from several men with attempts to discredit my research. The more awards and nominations I receive the worse it gets.
Are you may be aware I had special permission from lawyers to access the Newcastle documents and use these documents for my dissertation that others did not have and they appear on the Timeline of another campaign group Tainted Blood containing my own special reference marks easily identifiable. They pretend they belong to them? This is fraudulent.
If you are using any of the documents highlighted on this Tainted Blood page on Craske and Walford you need to reference my dissertation as I can prove these are my documents due to my particular marks on the pages.
All campaigners are doing is rehashing what I put together in Chapter 4 and taking chunks from my dissertation minus my name … ignoring the 23 years it took to access and collect all these papers from many different sources.
Tainted Blood and other campaigners who have shared these documents with media and their contacts without referencing such as Andrew March, Jason Evans and Mark Ward find it fun to abuse me … they then block me from groups so I cannot defend my work. March also did similar using key evidence acquired from myself and Colette Wintle (copied in) which we obtained in 2004. He went on to win a legal judicial review in 2010 against the then Secretary of State for Health pretending my research was his. I assisted him for months in good faith but did not give permission for him to use these documents which I LEGALLY acquired UNLESS fully referenced which he failed to do… He then took credit for my work as fellow campaigner Colette Wintle will verify as she also obtained letters alongside me in 2004. The above mentioned campaigners cannot show the original paper trail as they don’t have one.
This is also not the first time the Daily Mail has used my documents WITHOUT permission and WITHOUT properly referencing.
And here are recent questions I submitted to the DOH last week which is a copy of questions sent to a Consultant in a 2004 letter regarding Dr Craske as I said this is OLD evidence.
I have DOH confirmation of receipt and a reference number…
I am the widow of a haemophiliac infected with HIV/HCV through factor concentrate treatment. I trying to gain access to treatment batch numbers which were recorded as “suspect” for hepatitis. We are aware from old UKHCDO minutes of meetings from the early 1980s which we hold that Dr Craske specifically requested that haematologists “continue to collect suspect treatment batch numbers for hepatitis (including non-A, non –B, hepatitis ) on the forms provided”. I believe this may have been carried out at the request of the Department of Health funded 3 three year study looking at hepatitis infection rates in haemophiliacs. Please can you tell me how can we access this information? Surely patients themselves have a right to know if they were exposed to named “suspect” batch numbers.
There are two questions which remain unanswered, the first question is, were these “suspect” batches withdrawn from treatment as soon as they were identified, and secondly, were patients who received these “suspect” batch numbers informed they were likely to have been infected with hepatitis viruses, and any known infections recorded as adverse incidents. We understand that batch numbers were identified as “suspect” when virgin patients and new child patients were put onto concentrates for the first time and developed hepatitis. These batch numbers could then be traced back to other recipients. The Department of Health should have a record of their 3 year haemophilia/hepatitis study. Can you assist us to access this and the “suspect” batch numbers.
It does the Daily Mail’s reputation no good when the publication fails to reference, it then participates in the abuse of victims, survivors of the contaminated blood tragedy. I am asking you to address this issue or I will make an official complaint and take the matter further.
I look forward to your prompt response.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She is a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.