Carol Grayson and Peter Longstaff were abroad in 1993 unaware he had been tested for hepatitis C a year earlier without his knowledge and permission and the positive test result withheld. They were finally told the result in the Spring of 1994 and launched their campaign group Haemophilia North which became Haemophilia Action UK that same year.
(Image Grayson Archives)
Jason Evans, Factor 8 Group has made an attempt to analyse the destruction of documents on hepatitis C (also known as non- A, non- B and HCV) from the late 1980s and throughout the 1990s, these documents formed a key part of the haemophilia HIV litigation but were never shown to litigants at that time. Haemophiliacs became infected with HIV and hepatitis viruses B and C during the 1970s and 80s when factor concentrates used to treat their inherited bleeding disorder were often imported from the US. Plasma was collected from “high-risk” donors such as prisoners, homosexuals, prostitutes and “skid-row” donors.
The work done by Evans looking at a chronology of document destruction from 1989 to 1998 can be read in full on the following link,
HCV Cover-Up
The Infected Blood Scandal’s Hepatitis C Cover-Up
https://www.factor8scandal.uk/hcv-cover-up
However, the look-back excercise by Evans is without the benefit of lived experience and campaigning on Contaminated Blood during this important time period so is flawed with key elements missing. Carol Anne Grayson, author of this blog has attempted to go through Evan’s chronology of destruction of documents with the addition of highlighting what haemophilia campaigners were doing at this very same time which she argues contributed significantly to their destruction by government in order to hide alleged wrongdoing and escape liability. Grayson’s husband Peter Longstaff was a haemophiliac infected with HIV and hepatitis C as well as hepatitis B. Her brother- in- law Stephen also a haemophiliac died of AIDS in 1986.
Since he began campaigning in 2017, Evans frequently uses documents Grayson has unearthed though without referencing her and by changing timelines of discovery. These documents are available through Freedom of Information requests via the National Archives at Kew. Grayson discovered copies of documents that government had destroyed and instructed lawyers acting for her to return them to Kew in 2006.
Evans begins his chronology of document destruction duing the late 1980s/early 90s by focusing on government’s Fear of Litigation. He aims to consider what factors might have led to this shredding of important evidence. Grayson introduces the campaigner element during the 1990s and the beginning of haemophiliacs attempting to litigate for hepatitis infection plus the setting up of new campaign groups to draw attention to the impact of HCV.
To give some background and context, this decade was a time when the infection of haemophiliacs with hepatitis C was largely viewed by the media as a “dead story” with journalists accepting the government line that their infection with HIV was an “unavoidable accident” and many wrongly thought all haemophiliacs had been “compensated”. Hepatitis C was viewed as a far lesser problem if an issue at all. Haemophiliacs were living in the dark as information on HCV as a virus that could be deadly was only just beginning to surface in mainstream media partly due to the long incubation period before problems arose which could in some cases be 25 years and a test wasn’t introduced until 1991.
The Haemophilia Society was still minuting that hepatitis C was “no big deal” in 1992 and asking those tasked to investigate whether it was a problem to step down as it wasn’t viewed with any great concern. There was information available in medical journals in library archives but haemophiliacs didn’t have access to medical libraries and many weren’t even aware they had been tested with positive results. As Grayson and Longstaff were the first to discover haemophiliacs were being tested without “informed consemt” often without their knowledge using blood taken to test clotting factor levels. Some positive HCV test results were withheld from haemophiliacs for years. There was no internet for quick access to medical information and few published health education leaflets. Haematologists and government officials had known the implications of hepatitis C infection for some years but in those days doctors were often keeping cases “in house” perhaps because of how so many of their haemophilia patients were infected and the difficulties of doctors accepting this. There were no standard referrals to a liver unit and specialist care, only limited and crude treatment with Interferon (and then not for those coinfected with HIV who were not even considered for treatment or transplant) and by the time a haemophiliac with hepatitis C without HIV was in liver failure it was often too late to refer to liver specialists.
It is important to note that in the 1980s onwards, media articles on blood litigation regarding HIV were already evident in the global press and had been for some years but not so in the same way for hepatitis C. In the UK the Northern Echo ran a notable campaign fighting for compensation for haemophiliacs with HIV in which Grayson’s family took part. This particular 1989 American article (below) corresponds to the year Evans begins his timeline in terms of his history of trashing of documents and is from Grayson Media Archives. It shows that there were some infected persons in the US that considered suing blood banks which collected plasma and not only litigating against the pharmaceutical companies themselves. As well as looking at the impact of AIDS, hepatitis C was only beginning to be considered too in terms of litigation by haemophiliacs.
Health, Medical liability: Blood banks facing hundreds of AIDS suits (New York Times, April 27th, 1989)
Later that year (1989), Evans details the following correspondance from archived documents as a first generation test for hepatitis C becomes available and awareness of the consequences of infection are discussed between government officials, note, government decide not to introduce this test due to stating the test produced too many false positives. Other European countries do adopt this test deciding to “err on the side of caution.”
Jason highlights,
29th December 1989
Dr Rejman sends a “Cost-Benefit Analysis” of HCV testing to Dr Pickles & Mr Canavan. It states 50% of those infected Develop Chronic Hepatitis and he lists other risks which include Cirrhosis and Death. Amongst the potential risks of not introducing HCV testing he writes, is “Litigation”. (HIM 22 7 VOL 4, Page 280)
However what Evans misses out is that earlier in 1989 haemophiliac Peter Mossman (friend of Grayson) has already launched the first key legal case for hepatitis C and made this known to government. At this time the majority of haemophiliacs were oblivious to the fact that they had already been infected with the virus for years, some since the early 1970s with their first shot of imported factor concentrates that were licensed from 1973.
Mossman only became aware of his own infection after experiencing symptoms that were affecting his job as a coach driver and was therefore checked out and diagnosed with hepatitis C. (Before there was an official test for hepatitis C, it was a case of testing for hepatitis B and excluding. Mossman’s diagnosis came at the same time as all those professionals involved in the HIV litigation were playing down the dangers of hepatitis C. (This was later confirmed by Matthias Kelly QC in the early 2000s who reviewed hepatitis documents from within the 1991 HIV litigation that Grayson and her husband had unearthed. They showed a very different picture to that presented to the haemophilia community by government and their own lawyers and included information on the dangers of HCV infection WITHIN the that litigation.)
In 1989, Mossman was desperate for information on hepatitis C and could find little in the public domain, so began approaching doctors for information who unbeknown to him at the time were advising lawyers acting for defendants and litigants in the HIV litigation. Mossman’s case was a concern to government as the haemophilia HIV litigation was not yet settled and the dangers of hepatitis C were being kept from HIV litigants though lawyers, government and treating doctors knew that 99% of haemophiliacs with HIV were also infected with HCV and there had already been deaths.
In 1990, solicitors acting for haemophiliacs recorded in their own records they would suggest to government that hepatitis C infection should be subject to an Undertaking by haemophiliacs not to take legal action at any stage for hepatitis viruses. This was seen as a way of negotiating with government so that they did not take state benefits into account when a settlement was reached. It came as a shock years later to Grayson and her husband Peter to learn that it appeared that this suggestion had come first from their own lawyers when they had assumed it came straight from government. This solicitors’ initiative was seen as important by government who also favoured an Undertaking.
Grayson highlights the following programme which appeared on TV that same year (1990) that again would have raised alarm bells with government regarding liability for infecting haemophiliacs with deadly viruses and also gave their cause public attention. (This link was provided by Tainted Blood haemophilia group that set up in 2006.)
The Cook Report: Profits before patients (Tainted Blood, Youtube link, July 23rd, 1990)
A year later in 1991, Evans points out the following detail regarding haemophiliacs right to litigate for hepatitis infections,
22nd February 1991
Dr Rejman writes to DH officials stating that HIV infected Haemophiliacs should have to agree “not to raise Hepatitis in any further litigation”. (HIM 1 VOL 2, Page 198)
When applied to the HIV litigation, this became known officially as the Undertaking or as Grayson nicknamed it, the “waiver”.
Therefore in 1991, the HIV litigation is finally settled with an “ex-gratia” payment and many incriminating documents never seen by litigants are kept out of court, a hepatitis waiver is signed by haemophiliacs without “informed consent” and without understanding the implications however claimants get to keep their state benefits without them being affected.
Decades later in May 2022, Grayson wrote to her lawyers Milners acting for her in the Infected Blood Inquiry, referring to the 1991 HIV litigation, stating
“I have a QC legal opinion on the hepatitis state of knowledge issue at the time of the waiver (which again I can submit). I wish to state that according to Matt Kelly QC, Tony Mallen solicitor acting for haemophiliacs “did play-down the significance of hepatitis C” saying that it was “no big deal.” Yet the Re-Amended Statement Of Claim under the heading “Hepatitis and/or other viral infections” shows that Hepatitis C was pleaded as one of the consequences of infected blood products. As Matt Kelly QC points out:
At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”
Matt Kelly concludes,
I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.
Why did all these professionals play down the dangers of hepatitis C? I suspect it was to save money and avoid further litigation.”
Evans continues his chronology looking at the introduction of hepatitis C testing,
9th May 1991
J C Dobson writes to John Murphy, Dr Rejman is copied in, he raises concerns over potential press reports concerning delays in implementing a test for HCV and how the press may link this to the Haemophilia HIV Litigation settlement. (SGH0027855)
This was an issue Grayson would raise herself later after finding out her husband was positive for hep C in 1994 though tested years earlier without “informed consent” and the result withheld. She confronted the UK government on delaying testing until late 1991 and they sent their written response. Waiting for the 2nd generation test conveniently avoided testing haemophiliacs before they signed the hepatitis waiver (in the Spring of 1991) whereas a positive earlier test in 1989 using the first generation test may have raised alarm bells and a refusal to sign the Undertaking.
By late 1991/1992 as Evans details, government began to be aware of criminal cases in France regarding their haemophiliacs being infected with deadly viruses so concerns were growing for what might happen to government and doctors in the UK. The worrry was, could officials be imprisoned here?
Once the 1991 HIV litigation is settled in the UK, an order is made that both sides of the litigation should destroy papers within 8 weeks of the end of the case. Some documents appear to have been saved by solicitors acting for haemophiliacs initially in order to use in cases such as that of Peter Mossman as much of the HIV litigation contained many valuable and incriminating documents on hepatitis viruses. (Grayson knew this as someone who saw 69 boxes of evidence years later that escaped destruction, some of which she was able to save as previously stated, return via lawyers to the Dept of Health. These documents were later transferred to the National Archives, Kew for others to access via Freedom of Information requests.)
By 1991, Government awareness of litigation and criminal cases would now have increased as articles like this one below were published around the world. Grayson notes the following from her Media Archives,
France reels from blood scandal: Villains sought in distribution of HIV-tainted supply (Chicago Tribune, November 3rd 1991)
Evans continues his chronology noting the criminal cases in France,
8th November 1991
Canavan CC’s Dr Rejman into a letter, it outlines the French blood scandal and states charges have been issued against Allain who runs Cambridge / East Anglia transfusion in the UK. (GEB 5 VOL 16, Page 135)
24th October 1992
The Guardian, NYTimes and others report multiple jail sentences for former health officials involved in the Frances haemophilia blood scandal.
The Independent reports on JP Allains jail sentence and contrasts events in the UK with France. It is critical of UK action.
Evans also highlights the following regarding government files in the UK,
9th February 1993
ACVSB Files are closed, retained in section and marked for review in 5 years time. (DOCKETS / DH Internal Audit)
9th February 1993
MP Alf Morris asked the SofS Health “what representations she has had in regard to compensating people with haemophilia who have contracted hepatitis in the course of treatment under the NHS” – This is the first time the specific issue of HCV & Haemophiliac compensation is raised in the House of Commons
What is significant regarding the question from Alf Morris MP (of Manchester) is that Alf is the MP representing Peter Mossman. He is aware of and supporting his legal case and is beginning to raise questions on hepatitis C on behalf of his constituent. The reason Mossman ran into delay after delay is that he was being represented for some time by solicitors that had represented haemophiliacs with HIV. They were stalling hepatitis only cases (such as Mossmans) as they were still hiding the fact that they had downplayed hepatitis C to HIV haemophiliacs if they mentioned this at all. Had they progressed the hepatitis C cases without HIV, the HIV lawyers would have been fighting against themselves. How could they litigate for hepatitis C for Mossman when they had made out hepatitis was “no big deal” for haemophiliacs with HIV? This had the effect of not only stalling Mossman’s case but also stalling a case to overturn the hepatitis waiver which would be launched by Grayson and Longstaff the following year (1994).
Evans notes government intent to destroy documents, 30th July 1993
14 of the 17 ACVSB (GEB) volumes are marked for destruction and sent to the Departmental Record Office. – (Destruction Dockets / DH Internal Audit)
By the end of 1993, the heat is being turned up regarding the UK government as more HIV cases are settled globally (see below from Grayson Media Archives) and attention is now turning increasingly towards looking at litigation for hepatitis C.
AIDS suit accuses companies of selling bad blood products (New York Times, October 4th 1993)
and
Germany to pay victims in AIDS blood scandal (New York Times, November 13th, 1993)
https://www.nytimes.com/1993/11/13/world/germany-to-pay-victims-in-aids-blood-scandal.html
In the Spring of 1994, Grayson and her husband return from a period abroad. Within a week of return, Longstaff is told he is hepatitis C positive. He visits his old solicitor that represented him in the 1991 HIV case with the intention to begin litigation for the further infection of hep C only to discover the significance of the “waiver” which prevents him from litigating. This is when Longstaff officially launches his legal case to overturn the hepatitis waiver in the HIV litigation and seeks to apply for legal aid.
Indeed 1994 is a hugely significant year campaign wise. Although the French criminal cases are still in the news, UK government concerns are now much closer to home which Evans largely ignores. Grayson and Longstaff set up Haemophilia North (which later becomes Haemophilia Action UK to reflect the national remit), their aim is to investigate and research the history of Contaminated Blood, to call for a public inquiry, overcome the hepatitis waiver in order to litigate for HCV and fight for compensation. Within a week the Manor House Group is set up jointly by Peter Mossman and Peter Hughes and Colette Wintle sets up as an independent campaigner. They are all infected with hepatitis C. Birchgrove Group for infected haemophiliacs is already is existence but at that time focuses predominately on HIV. Government is now faced with the prospect that Mossman’s legal case which is not blocked by a waiver could be won forcing compensation and is aware other haemophiliacs with hepatitis C without HIV are now starting to take legal action. However the case that really concerns government is the thought of 1252 very angry haemophiliacs with HIV realizing they were cheated and now wanting to claim for a second virus, HCV.
Evans writes of a Same Day Coincidence looking at fear of litigation and destruction of documents but should also have factored in the campaigning of haemophiliacs on the ground. Legal cases were ALREADY active. A look back HCV study would have drawn far more attention to hepatitis C in haemophiliacs and identified more cases.
29th September 1994
Dr Rejman attends the 3rd Meeting of the MSBT giving serious thought to a nationwide HCV “Look-Back” exercise, it is said at the meeting that “There was also considerable potential for litigation.associated with HCV lookback.” (DOH0010021)
On the same day, 29th September 1994 Evans notes a further destruction of documents.
GEB 1 VOL 4 is Destroyed (ACSVB Papers covering 16/05/1989 – 19/07/1990) – (Destruction Dockets)
The evidence of how dangerous hepatitis C can be is growing, Grayson notes the following from her own Media Archives in November 1994 which publicly identifies deaths of haemophiliacs from hepatitis C.
Contaminated blood kills 12 (Independent, Nov 16th 1994)
Quote,
Twelve British men with haemophilia have died from the liver disease hepatitis C after they were given contaminated concentrates of blood.
All 12 men died last year. At least 2,000 more people are infected, and four have had liver transplants as a result.
Another 3,000 adults and children, who are not haemophiliacs but did receive fresh blood transfusions before 1991, may also have been infected, according to the Blood Transfusion Service, but are unaware of their condition.
http://www.independent.co.uk/news/contaminated-blood-kills-12-1439843.html
and
Hepatitis C may bring repeat of haemophiliacs AIDS battle (Independent, Nov 16th 1994)
and
Hepatitis C victims ready to sue (Independent, November 18th 1994, Hardcopy Archived)
So why has Evans largely ignored the impact of these haemophilia legal cases in his destruction of documents analysis. Well many years later when Evans begins campaigning (2017) he works with Daily Mail journalist Sophie Borland on the following story in 2018 regarding the waiver as if this is only just coming to light,
New tainted blood scandal: Patients infected with HIV were each paid around £24,000 to sign away their rights to sue – before being told they’d also contracted hepatitis C
The waiver is FALSELY portrayed as a new story and scandal. There is absolutely no context that a legal challenge to the waiver was launched by Grayson’s husband over 2 decades earlier in 1994. The history is simply obliterated. Grayson complains to author Sophie Borland. She wants to make an official complaint to IPSO (that investigates inaccurate reporting) but is advised that any documents in dispute could be tied up for months while the content is disputed. Grayson’s first priority at that time is to submit evidence to the newly opened Infected Blood Inquiry (2018) chaired by Sir Brian Langstaff. In other publications, Evans makes out no one was really interested in a public inquiry before he arriveed on the scene which is absolute nonsense as campaigners that set up in 1994 were all calling for a public inquiry as well as compensation fron that date onwards.
What Evans may not realize is that in the 2000s as the waiver legal case progressed, the Skipton Fund was eventually set up to give “ex gratia payments” to those with hepatitis C to keep Longstaff’s case out of court. It is Longstaff’s QC Matthias Kelly that heads up the Hepatitis Working Party with the Haemophilia Society and produces written proposals for a financial settlement detailed on his website (see below). Kelly has been able to benefit from and use the knowledge and evidence brought to him by Grayson and Longstaff to put pressure on government and influence thinking resulting in “ex gratia” payments being granted to haemophiliacs for hepatitis C and the formation of Skipton. Kelly writes on his website,
Quote
Chairman of the Hepatitis C Working Party established by the Haemophilia Society in September 2001, to devise costed proposals for a financial assistance fund to recognise the loss and suffering of people with haemophilia resulting from their infection with hepatitis C (HCV). Reported March 2002.
https://www.39essex.com/wp-content/uploads/barrister-pdfs/matthias-kelly-qc.pdf
It should also be noted that this move also made it more difficult for those haemophiliacs infected with HIV to take cases against their lawyers when it was discovered they had witheld key evidence from their clients and not sought “informed consent” over the waiver. This appeared to concern Kelly and how that would affect the reputation of medico-legal lawyers in the UK as several major firms were involved.
Going back to Evans 1990s chronology, the following is a handwritten letter from Colette Wintle on hepatitis C infection dated 22nd November 1994 to a government minister wanting action on hepatitis C infection in haemophiliacs. Colette is a female with a bleeding disorder infected with hepatitis C also now realizing the virus is far more dangerous that she was told. Colette is also dealing with misogyny in her treatment as it was not until years later that female haemophiliacs were recognized and the ways in which they bleed differently such as having periods and experiencing childbirth and the menopause.
Returning to Evan’s timeline regarding the destruction of documents in the 1990s, the year 1995 is another year of significance for haemophiliacs as the national Haemophilia Society that dawdled and delayed throughout 1994 is now under great pressure from its members and finally sets up its official Hepatitis C campaign. There is also litigation ongoing from those infected through whole blood transfusions. It is no surprise that documents related to the HIV litigation continue to be destroyed as they would be very useful in any litigation for hepatitis C. During 1995, Grayson and Longstaff are in contact with 3 firms of solicitors that were involved in the HIV litigation and held records on her husband. They begin to obtain evidence to piece together what happened to Pete and how he was infected with multiple viruses.
In June of 1995, Grayson notes the following article from her Media Archives which is another warning to government that infecting haemophiliacs is going to be costly,
Hepatitis C and Haemophilia: Coinfection with HIV is common and will demand great resources (BMJ, June 24th 1995, Hardcopy Archived)
Again, it comes as no surprise that government would want to destroy more key files,
On 13th December 1995, George Mudie MP (Leeds East) stated the following during a parliamentary debate on the impact on haemophiliacs living with hepatitis C,
I welcome the opportunity of bringing once again to the attention of the House the plight of 3,000 individuals who, while being treated in the national health service for haemophilia, were given contaminated blood products and as a result contracted hepatitis C. The Minister will be aware that those individuals were all treated before 1986. In that year, a system was introduced which prevented contaminated blood from being passed on, but for those 3,000 people, the system came too late—they had contracted hepatitis C.
Those few words in medical terms trip off the tongue so lightly and so unemotionally that it is necessary to describe the way in which that treatment has adversely affected the future of those 3,000 people. Of them, 2,500—approximately 80 per cent.—will develop chronic liver disease. I should like to spell out their fate. They will be confronted by a variety of problems, including jaundice, vomiting and abdominal pain caused by the swelling of the liver and the spleen. When that continues for a long time, it leads to scarring. Scarring means cirrhosis of the liver. Between 250 and 500 of those 2,500 people will develop cirrhosis of the liver. Chronic hepatitis and cirrhosis can lead to a hepatoma, a cancer of the liver, from which many will die. Between 1988 and 1994, more than 550 people suffering from haemophilia died from liver failure, and in 1994 alone, 14 people died in those circumstances. The rate of deaths is accelerating.
Evans notes the following destruction of HIV litigation documents just days after,
18th December 1995
Treasury Solicitor Destroys HIV Haemophilia Litigation files following a 1st review procedure. Case No L893211. (Simon R Wit Statement 12th Apr)
In 1996, Eire announces a compensation package for their haemophiliacs and Grayson announces a new campaign initiative for “compensation on a parity with Eire” after actively seeking information on this settlement from Raymond Bradley of Malcolmson Law solicitors. Grayson has been looking around the world for the best compensation deal for haemophiliacs and so far this is the one that stands out. This same year she writes to the Haemophilia Society to adopt the call for “compensation on a parity with Eire”. The Haemophilia Society state they will look into this, it appears they may take this on board but then write back stating they are calling for a Hardship Fund but it will only be for haemophiliacs with hep C and not those co-infected with HIV. Grayson is furious as she points out that the 1991 settlement DOES NOT include paying out for hepatitis C for those haemophiliacs with HIV. This increases frustrations between campaigners and the national Haemophilia Society.
During 1995 and 1996, Grayson and Longstaff are writing to and receiving letters from government ministers on the impact of hepatitis C on haemophiliacs which is covered in Grayson’s third written statement to the Infected Blood Inquiry. These include letters to and from Leonard Levy, John Horam and Stephen Dorrell. In 1996 they have even written to and received a reply from Justice Ognall who presided over the 1991 HIV litigation who praises Grayson’s “well reasoned arguements” for why the hepatitis waiver should be overturned. If that happens, government know there are no restrictions for litigating for hepatitis C for coinfected haemophiliacs. This same year, Mandy Cheatham (employed by the Haemophilia Society) publishes her, Haemophilia and Hepatitis C Research Report which Grayson has contributed to being interviewed by Mandy by phone regarding her husband living with hepatitis C and has previously submitted evidence in writing.
On the 3rd February 1996 Grayson wrote to Stephen Dorrell as follows regarding the waiver, see letter extract below
Grayson and Longstaff later discovered their own solicitors did in fact know the dangers of hepatitis C during the HIV litigation but had withheld these facts from their clients.
Another letter shows an extract from a reply Grayson receives from Leonard Levy on the 14th February 1996 to a letter she wrote on hepatitis C. I refer to both haemophilia and whole blood transfusions here which are sometimes required when haemophiliacs are undergoing operations. This was the early days of campaigning so knowledge was just being gained about hepatitis C at a time when as mentioned previously, little was discussed in mainstream media, few haemophiliacs had access to medical libraries and there was no internet as we now know it.
On 16th February 1996 Grayson writes again to Leonard Levy as follows, (personal details removed). Grayson points out the case of a female with a bleeding disorder who has ALREADY won her case for hepatitis.
Back to Evans chronology where he notes the following which appears to show government concerns over disclosing documents as haemophiliacs are at the same time questioning why they were not shown the evidence on the dangers of hepatitis C contained within the HIV litigation.
3rd April 1996
Dr Rejman receives an e-mail from Gov legal advising him that there is no duty to disclose the ACVSB files upon request and that if a court order is obtained to see them that the Gov would seek to use Public Interest immunity. (TBL 4 VOL 4, Page 113)
9th April 1996
Dr Rejman is advised by Paul Pudlo not to disclose ACVSB files. Paul Pudlo also talks of the need for “avoiding the appearance of secrecy”. (TBL 4 VOL 4, Page 87)
International cases of litigation regarding haemophiliacs continue to be highlighted in the media. The following are examples from Grayson Media Archives,
Japan takes its medicine- The fate of hundreds of haemophiliacs has struck at the very heart of the cosy relationship between Japanese doctors, drug companies and government (New Scientist, June 1st 1996)
and
Blood, Money and AIDS: Hemophiliacs Are Split; Liability Cases Bogged Down in Disputes (New York Times, June 11th, 1996)
In December 1996, Alf Morris of Manchester MP (who later became Lord Morris) stated the following regarding the need for financial help for those haemophiliacs infected with hepatitis C and notes the death of some haemophiliacs,
I was glad to learn that the hon. Member for Hendon, South (Mr. Marshall) had secured this timely debate, and I most warmly endorse his moving plea.
Sadly, more than 60 of the victims of the tragedy have already gone to their graves with a deep sense of injustice. The achievement of elementary justice for some very needful people is at the heart of our campaign, which, as the hon. Member said, is now supported by more than 270 Members of Parliament of all parties. Our campaign is also about morality. The Government accepted their moral responsibility in the case of HIV infection in the course of national health service treatment. They now have the same responsibility in the hepatitis C cases.
It is morally wrong to deny the victims of this appalling further tragedy in the haemophilia community the modest help they seek. What is morally wrong ought no longer to be tolerated in Britain. There is ample parliamentary time available. The Government’s legislative programme is gossamer thin, and, given the nod by Ministers, I am sure that the House would approve within an hour the help we seek.
On the 13th August 1996, Longstaff’s then solicitor Graham Ross wrote to Jim Cousins MP at Grayson and Longstaff’s request regarding the number of haemophiliacs (without HIV) that had begun litigation for hepatitis C and on the waiver (Undertaking) (see extract below). Government know if Longstaff overturns the waiver it will open the floodgates for further litigation regarding the haemophiliacs that were involved in the original HIV litigation.
By 1997, Canadian haemophilia cases are regularly in the media with Justice Krever investigating how their haemophiliacs came to be infected. Grayson is also raising the Krever Report to her MP. The GMC issue latest guidelines for testing for HIV and HCV which Longstaff then includes in his legal case and later submits to the police in 2002. The couple argue there were ALREADY guidelines for testing established in hospitals PRIOR to the HIV test being introduced. Grayson herself was involved in devising early protocols for testing as she worked on a regional unit as a nurse and hospitals were told to prepare guidelines for an HIV test being introduced in late 1984. Grayson argued the same should have applied to hepatitis viruses including hepatitis C when a test was introduced.
Evans highlights the following instructions on the ethics of testing and there is reference also to Krever,
September / October 1997
The General Medical Council circulates guidance relating to testing, particularly in relation to HIV / HCV. It states: “You must obtain consent from patients before testing” & “you must make sure that the patient is given appropriate information about the implications of the test” & “Where a child cannot give or withhold consent, you should seek consent from a person with parental responsibility for the child.”& “Taking blood from a patient without consent may leave you open to criminal charges.” (PEN0180494)
26th September 1997
Legal cases challenging Justice Krever’s jurisdiction at the Canadian Inquiry (stemming from his placement of blame following warning notices) were dismissed.
As Evans notes there is significant destruction of documents on the 14th and 15th October 1997 October 1997 which are detailed in his analysis.
14th October 1997
GEB 1 VOL 6 is Destroyed
15th October 1997
GEB 1 VOL 7 is Destroyed
GEB 1 VOL 8 is Destroyed
GEB 1 VOL 11 is Destroyed
GEB 1 VOL 12 is Destroyed
GEB 1 VOL 14 is Destroyed
25th November 1997
The following from Grayson Media Archivrs on the Krever Report is published in the Lancet in December 1997,
Published:December 06, 1997DOI:
Quote,
A 4-year, Can$15-million investigation into Canada’s tainted-blood scandal has concluded that the nation’s blood system desperately needs to be revamped and that recipients of infected blood should immediately receive no-fault financial compensation. The Krever report also indicates that far more people were affected by the scandal than previously estimated (panel).
https://doi.org/10.1016/S0140-6736(05)64294-8
In 1998, Grayson highlights the following from her Media Archives showing increased efforts by campaigners in terms of litigation.
Legal battle to get millions for blood victims (Newcastle Journal, January 19th 1998, Hardcopy Archived)
Grayson continues to write to Frank Dobson (Health) regarding HIV, hepatitis C and Recombinant. Whole blood legal cases are now progressing and don’t have the hurdle of the waiver to overcome. However legal cases of haemophiliacs with hepatitis C without HIV are starting to face great difficulties over legal aid funding and are being shut down, Haemophiliacs are becoming suspicious of why this is happening and what may be going on behind the scenes?
The impact of haemophiliacs increased campaigning and letter writing on hepatitis C is starting to make an impact at government level as Evans notes,
3rd February 1998
Responding to a question about compensation for Haemophiliacs infected with HCV, Health Minister Paul Boateng states “Since 2 May 1997 there have been five Parliamentary Questions, in addition to this one, and Ministers have received approximately 70 letters about the 613W issue of special payments for haemophiliacs infected with hepatitis C through National Health Service blood products. Ministers have also met representatives of the Haemophilia Society to discuss the issue.
This is a complex matter which needs full and careful consideration. My right hon. Friend the Secretary of State has promised to write to the Haemophilia Society about it, and he hopes to be in a position to do so shortly.” (HC Deb 03 February 1998 vol 305 cc612-3W)
1st March – 10th March 1998
A number of questions are raised in the House of Commons concerning Haemophiliacs, Compensation and HCV.
HC Deb 05 March 1998 vol 307 c700W – 5th March 1998
HC Deb 05 March 1998 vol 307 c758W – 5th March 1998
HC Deb 06 March 1998 vol 307 c823W – 6th March 1998
HC Deb 10 March 1998 vol 308 cc114-5W – 10th March 1998
Evans highlights 17th March 1998
GEB 1 VOL 9 is Destroyed
GEB 1 VOL 10 is Destroyed
GEB 1 VOL 13 is Destroyed
On April 23rd 1998, Grayson writes again to Frank Dobson in Health, she notes she has ALREADY witten to him on a number of occasions via her MP Jim Cousins, this letter is titled, Haemophiliacs with HIV and Hepatitis C through NHS Blood Products, the following is an extract, and reflects the limited treatment of that era particularly in those that are co infected with multiple viruses,
By June 1998, Grayson notes concerns are growing, again regarding the health impact of hepatitis C, this is from her Media Archives (see below). Hepatitis C is referred to as an “iceberg virus” due to the fact that the virus was good at hiding and what might be hidden under the surface may be a lot greater than what is initially seen on the surface by doctors and their patients.
Iceberg virus (hep c) may be more deadly than Aids (BBC web, June 9th 1998, Hardcopy Archived)
Throughout 1998 Grayson is also writing to Frank Dobson (Health) on the need to introduce Recombinant. It is 2 years since Pete first wrote to his haematologist and local health authority requesting Recmbinant in the spring of 1996. He later finds out he has had 12 exposures to vCJD in the Autumn of 1996 so his exposure was entirely avoidable. Jim Cousins the couple’s MP continues to write to government on hepatitis C as he has done since 1994. Increasing knowledge of haemophiliacs exposure to vCJD through blood products also reminds government how dangerous factor concentrates were in the 1970s and 80s transmitting HIV and hepatitis viruses.
By 1998 haemophiliacs are making their presence known demonstrating at Westminster regarding their infection with hepatitis C. Grayson writes in her statement to the Inquiry,
“I attempt to join a peaceful protest at Westminster in (1998) but I am told
by the Chief Executive of the Haemophilia Society that l am not welcome
because my partner also has HIV as well as HCV and they are NOT
campaigning for people like him and “it would be embarrassing if we had
to remove you.”
Grayson and Longstaff recall being told by the Haemophilia Society, “you have had your money” referring to the “ex-gratia” payment for HIV but as she highlighted, this DID NOT include any payment for hepatitis C.
Grayson notes the following from her Media Archive (see below) as the government go all out to block compensation for haemophiliacs with hepatitis C having destroyed many documents that could have helped their case for compensation.
Government rejects compensation for haemophiliacs (BBC July 28th, 1998, Hardcopy Archived)
However as ever haemophiliacs continue their fight for justice and the following two articles appear in 1999 (Grayson Media Archives, see below) where Alf Morris supports financial support for ALL haemophiliacs infected with hepatitis C.
Tale of two viruses: Alf Morris on the forgotten haemophiliacs (The Times, June 6th 1999, Hardcopy Archived)
and
Haemophiliacs pursue compensation fight (BBC News, November 21st 1999, Hardcopy Archived)
Grayson and Longstaff refuse to give up fighting for a public inquiry and compensation despite the strong rejection from government and in 2000 set up what is to be a joint media Bad Blood campaign with the excellent Louella Houldcroft and the Newcastle Journal. They go on to break many key stories via the Journal which receives an award for its hard hitting campaign for truth, justice and financial recompense. Although the Journal no longer exists, the campaign continues today with its sister paper the Newcastle Chronicle. Journalist Sam Volpe continues to deliver important stories with Grayson and other campaigners though Longstaff died in 2005 as a result of being infected with HIV and hepatitis C, harmed along with his younger brother by the state.
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”.
