Contaminated Blood: Carol Grayson’s response to Jason Evans Podcast 3 on searching for documents through FOI

Lord Patrick Jenkin of Rodin, a Conservative Peer was assisting me to locate government files related to contaminated blood in 2005 with my MP Jim Cousins writing to try to ensure they weren’t destroyed

(Image via the Independent)

Last night I watched and listened to Podcast 3 from campaign Jason Evans, the son of a haemophiliac who died after receiving contaminated blood. Many haemophiliacs became infected with HIV and hepatitis C (also known as Non-A, non-B) after taking a treatment called factor concentrates (derived from pooled plasma) for an inherited bleeding disorder. Factor concentres were manufactured  in the UK and also imported from the US where paid donors were used with plasma taken from “high-risk” sources such as prisons, “skid-row” and gay men who were targeted for their “hepatitis rich” blood in the 1970s and 80s.

Evans who runs Factor 8 Campaign Group has clearly spent a lot of time and effort during his 3 years of campaigning, tracking down the names of files relevant to his personal legal case and the Infected Blood Inquiry under Freedom of Information but is without the lived experience of decades of campaigning which some infected persons and their partners have aquired.

Evans quite rightly highlights the documents which are already in the public domain, from myself, supported in doing so by my former MP Jim Cousins and past legal firms. These are the documents I fought to have released that were used to inform the Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991 (2006) which I critiqued for my research dissertation written in the same year. I also organized to have copies of other government documents returned (which the Department of Health claimed to have destroyed) and were part of the 1991 HIV litigation. This process was delivered on my instructions via solicitor Paul Saxon of Blackett, Hart and Pratt once the dissertation was finished and I maintain a series of legal letters detailing their return. The returned documents were initially available for viewing on the Department of Health website and were later transferred to the National Archives at Kew. A legal letter from Milners solicitors acting for me has been sent to Kew recently requesting that they reference appropriately and correctly with a short history of discovery attached which they have so far failed to do.

Evans has made great use of the documents I discovered in his interviews with the media though they have all been used before to assist journalists locally and nationally when they were first discovered by myself as opposed to being accessed through FOI many years later.

In Podcast 3, Evans points out that there are additional files held by governmental departments that are now subject to a government audit which he maintains have never been seen by anyone… but here I beg to differ. On freezing the screen I recognized titles of documents which I hold that are from the 1991 HIV litigation. These are papers that were not part of the return of documents to Kew as I had aquired them from a number of different stakeholders over the years. Therefore they did not come under the earlier instructions which pertained only to documents still held by a Newcastle solicitor’s office and other legal offices and not those obtained separately and kept elsewhere.

Jason Evan’s Podcast 3 can be heard here,

I continued to seek out documents that might help the contaminated blood campaign and back in 2005, I enlisted the help of Sir Patrick Jenkin, who wrote to me on April 14th, 2005 as follows,

Dear Miss Grayson

On the morning of Wednesday 13th April, I met the Permanent Secretary at the Department of Health, Sir Nigel Crisp. This proved to be reasonably satisfactory.

I wanted to raise 2 matters, the first of which is of direct concern to you. Sir Nigel had with him, the senior official that looks after the records for the Blood Policy Team at the Department of Health, Miss Zubeda Seedat. She produced a long list of files covering several pages of papers relating to the blood products policy over several years. These are files which exist in the Public Records Office, but so far nobody has begun to go through them to find out which of them might be relevant to the issue of contaminated blood leading to either HIV or hepatitis C. It is already clear that most of the files are not relevant to this, but somebody is going to have to go through them to be able to isolate those which are relevant. This may take a little time but they have promised to get in touch with me as soon as this work has been done. I will then be able to examine the relevant files in order to refresh my memory about papers that went across my desk when I was Secretary of State for Health 1979-81.

Sir Nigel went on to make the point that the initial use of the files was about HIV, but when compensation was paid to those who contracted HIV through contaminated blood products, it appears that most of the relevant files were then scrapped.

(Note, Jenkin is mistaken here, no compensation was ever paid to haemophiliacs in the HIV litigation only an “ex-gratia payment”.) He goes on to say,

At that time Hepatitis C had not been identified as a another potential risk. It may be therefore, that some of the files I want to see no longer exist.

(Note, this information about hepatitis C is also incorrect as we now know there were concerns with regard to a 1978 3- year retrospective study, found within the HIV litigation, over the dangers of Non-A, non-B hepatitis. Detailed studies were carried out on haemophiliacs and Dr Craske who led the way, noted,

“Complications… The main complication of factor VIII and IX associated hepatitis is chronic hepatitis. Between 20 to 40% of haemophiliacs on long term factor concentrate treatment had abnormal aminotransferase levels”. There is as yet no precise information regarding the likely risk of serious chronic hepatitis disease but a recent collaborative study (10) where liver biopsies and post-mortem material was investigated showed while nearly all the livers examined had histological changes, about 15% had changes that may be indicative of serious complications in future. Some children with cirrhosis had received concentrate for 6 to 7 years” it seems likely that most of the cases of chronic hepatitis are associated with Non-A, Non-B hepatitis, which is known to produce a chronic carrier state, like that of hepatitis B.”)

Jenkins went on to say,

Sir Nigel apologised profusely for the discourtesy of the Department in sending me the first of the Lord Warner letters dated 27th January 2005 making necessary the second Warner letter dated 10th March 2005, which gave a good deal more information about the files. He was kind enough to recognize that the Department had conspicuously failed to respond properly to my initial approach.

Finaly I have given him a copies of the Report of the All-Party Group on Hepatitis C and I am sure it will do no harm to have fed that in at the highest level.

The meeting was satisfactory as far as it went, but much will depend on the search through the long list of files to find the relevant material.

Yours Ever 

Patrick Jenkin

Although the government had historically maintained for many years that “all the information was in the public domain” (their reason for repeatedly refusing a public inquiry) fellow campaigners and I were cynical and had continued to quietly carry out our own checking for additional files that we believed were still hidden from view with some retained under “commercial interest”. There was no doubt also there was concern from government of having to deal with further litigation particularly for hepatitis C.

During the 1991 HIV litigation, there was a process called “discovery” which is described in law by Isaacs and Isaacs as,

“the exchange of legal information and known facts of a case. Think of discovery as obtaining and disclosing the evidence and position of each side of a case so that all parties involved can decide what their best options are – move forward toward trial or negotiate an early settlement.

Parties in a case are required to participate in the discovery process, meaning they must hand over information and evidence about a claim so all participants can know what they are facing at trial.”

Though disclosure and exchange of documents did occur in the 1991 HIV litigation unfortunately in those days the litigants (haemophiliacs) were not given the opportunity to look at these documents while the case was ongoing though many years later  my late husband Peter, an infected haemophiliac and I did get to view some of these documents. In fact the government was 5 weeks away from having to disclose all their documents in court where they would have likely been made public when government decided to award an out of court settlement emphasising strongly in writing that this was NOT “compensation” but in fact an “ex-gratia” payment.

Once the settlement was reached, both sides were under instructions to destroy the documents within 8 weeks though that may have been extended slightly. However as a document I discovered shows from December 1991, our own solicitors as a lead firm appear to have been exempted as ironically they wanted to use the hepatitis evidence in the HIV litigation NOT for HIV haemophiliacs where around 99% also had hepatitis C but for other hepatitis cases. One such case has been highlighted to the Inquiry with the name of the litigant who has since died along with the document on retention, disposal and use of the 1991 HIV litigation papers. I am also in the process of scanning the most important documents myself to the Inquiry investigation team which are being submitted daily with copious notes so they have as full a historical picture as possible and can cross-match relevant papers. The rest will be scanned by the Inquiry.

After the letter to me from Jenkin, I asked my then MP Jim Cousins on June 8th 2005 to write to the Department of Health ensuring that all documents relating to the HIV litigation and to contaminated blood were maintained, which he did. This was BEFORE the return of the documents to Kew in 2006 organized by myself.

In a letter I wrote to Jim Cousins MP dated June 8th 2005, I became concerned to hear of the possible destruction of HIV litigation documents and state,

I have enclosed 3 letters from your (details included)……. and the third from the DOH (Department of Health) with regard to my request for Freedom of Information. I am disturbed to learn that the DOH appear to have destoyed/information/evidence from the original HIV litigation, especially as you wrote  yourself some time ago (at my request) asking that these documents be retained in case of a public Inquiry. I would be grateful if you could establish when these documents were destroyed and on whose orders. 

As it happens all may not be lost, I would be grateful if you could support me in obtaining the government documents which have been sent in the past to one of the solicitors representing HIV positive haemophiliacs and recall seeing a box specifically marked “government files” within the last 3 years. I will now go back to the DOH and ask that they grant me written permission to view and copy any government documents sent as generic evidence in relation to the contamination of haemophiliacs with blood borne viruses, maintained at the offices of solicitors that represented HIV positive haemophiliacs.

I had already aquired some of the HIV litigation documents as detailed in an e-mail to Colette Wintle and her husband Steve dated March 15th 2001 as I was able to access government documents not only from solicitors in Newcastle but another 2 firms that represented my husband in other parts of the country. In the e-mail, I describe finding some files with our solicitor, stating,

“What a shock! The original HIV case was based on the fact that several professional bodies in this country were negligent with regard to ignoring safety issues on hepatitis viruses, this included hepatitis C” 

I then continue in further detail to explain the arguement.

On 1st December 2005, Sir Nigel Crisp wrote back to Lord Jenkin with more information on the destroyed papers from the HIV litigation, the letter can be read on Tainted Blood website as follows:-

Click to access Lord%20Jenkins%20Letter.pdf

However more HIV litigation documents will no doubt emerge from another source aside from those I hold and those remaining with the government that my MP Jim Cousins and Lord Jenkin managed to help locate and save.

Our current lawyers Milners were instructed by Colette Wintle and I to access and obtain key documents belonging to and following discussion with our long- standing campaign colleague Peter Mossman with his full agreement. Mossman had access to some of the HIV litigation documents during his case for hepatitis C but not HIV. These have now been transferred to Milners and were viewed along with others he had obtained over the years and collected by the Inquiry investigator Kevin Dupree who visited the offices to go through them with our lawyers at their Leeds office last week. Colette and I will have full access to these documents unredacted as instructed by Mossman. It was seemingly a useful trip with new documents emerging.

So in conclusion to return to Evan’s Podcast 3, it remains to be seen what will ultimately emerge from the audit of documents detailed in his Podcast though clearly some documents aren’t new and have already been viewed and utilized as they were part of the discovery documents we aquired years after the HIV litigation ended. The documents were not only government documents but evidence, information, guidance on dealing with viruses and studies they had aquired from all kinds of other agencies and experts to inform their thinking on the use of blood and blood products and to respond to the subsequent infection of patients with multiple viruses.

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 was 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”.




About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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2 Responses to Contaminated Blood: Carol Grayson’s response to Jason Evans Podcast 3 on searching for documents through FOI

  1. Samuel Smith says:

    What a comprehensive response (it doesn’t do it justice to call it a ‘Comment’). The Inquiry would save a lot of time and money by employing you. I’m concerned that not many people will see this response. There were a number of points I had never heard before. I’m sure I’m not the only one that would apply to.

    • Thanks for your comment which is appreciated. You have highlighted a major difficulty which is ensuring not only that all the evidence is seen and heard by the Inquiry Team and all infected and affected but thats its all cross matched with all other available evidence. I am trying to scan the most important documents myself out of a large archive I hold and submit daily to the investigation team with notes to explain key points rather than simply dump a big depositary on the Inquiry which would make little sense without explanation. Dates, history and evidence is in the heads of long standing campaigners as well as being on paper but I have to say it is still an overwhelming task and one which is being carried out by witnesses that are often of an older generation and in poor health! I value that the Inquiry is bringing in expert witnesses but so much of what is important wasn’t published or in the public domain. This will therefore be a challenge to experts coming along years later and basing their own studies on what is public and often I have to say down-played compared to hidden evidence from “behind the scenes”!

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