A long awaited week at the Infected Blood Inquiry finally arrives this Tuesday regarding the questioning of witness Kenneth Harry Clarke, Baron Clarke of Nottingham CH, PC, QC better known to many simply as (Conservative politician) Ken Clarke who served as Minister of State for Health (5th March 1982- 2nd September 1985) as AIDS was emerging and was Health Secretary between 25th July 1988 and 2nd November 1990. The advising forces behind ministers, the civil servants, must also come under closer scrutiny as well as the known “face at the front”.
The Inquiry is an independent public statutory inquiry set up under Chair Sir Brian Langstaff “into the use of infected blood”. Haemophiliacs (the focus of this article) are a distinct patient group with a hereditary bleeding disorder which affects clotting. Many were infected with HIV and hepatitis viruses in the 1970s and 80s through their use of factor concentrate blood product treatment (often imported from the US) given to help their blood clot. Plasma was collected from the highest risk donors for viral infections including paid prisoners, gay men, sex workers, drug addicts, also from skid-row clinics in Central America and Haiti. Some plasma was even reported to come from South Africa. Haemophiliacs were later exposed to new variant CJD through UK blood products.
The 1991 HIV Haemophilia litigation solicitors recorded the following details which occurred just a few months AFTER Clarke became Minister of State for Health, though other non haemophilia AIDS cases preceded this:-
July 6th 1982, American reports of pneumocystis pneumonia in a haemophiliac: evidence of cellular immune deficiency: possible transference through blood: public health service advisory committee formed (First haemophiliac victim of AIDS.)“
December 1982, Report of an occurrence with AIDS after a blood transfusion
January 13th 1983, A number of articles in the New England Journal of Medicine on Haemophiliac and AIDS. Lederman reports widespread immunity abnormalities, possibly linked to AIDS. Menitova states that AIDS has a 40% mortality and reports widespread cell abnormalities. Desforges recommends cryoprecipitate rather than concentrates because of the risks of AIDS.
Jan 15th 1983 Dr Jones (UK) reports in the Lancet common cell immunity in haemophiliacs, which is possibly linked to AIDS
March 23rd 1983 FDA requirements on blood donation introduced
July 13th Biological Subcommittee of CSM recommends very little is done about the threat of AIDS to haemophiliacs.
August 1983 First UK haemophiliac dies of AIDS from US factor VIII concentrate administered in December 1981.
September 1st 1983 DHSS publish first blood donor leaflet
The key points on which the UK government are allegedly liable with regard to AIDS including dates are included in the document. In terms of alleged liability the litigation papers also highlight the serious failings by government to act on hepatitis infection known about many years before HIV arrived on the scene. The importance of tracing back of haemophiliacs treatment batch numbers to source was expressed as a key tool to assist in establishing liability.
On the 14th November 1983 Hansard records the following question from Edwina Currie:-
“asked the Secretary of State for Social Services what advice has been given to hospitals concerning the use of imported factor VIII in the light of recent concern about its possible contamination with the causative agent of acquired immune deficiency syndrome.“
Mr. Kenneth Clarke
“There is no conclusive evidence that acquired immune deficiency syndrome (AIDS) is transmitted by blood products. The use of factor VIII concentrates is confined almost exclusively to designated haemophilia centres whose directors and staff are expert in this field. Professional advice has been made available to all such centres in relation to the possible risks of AIDS from this material.”
On January 17th 1984 Ken Clarke states as recorded in Hansard,
“Three cases (of AIDS) have occurred in patients with haemophilia who had been treated with blood products. No cases have resulted from blood transfusion itself.”
What most victims want from a public inquiry is “truth and justice” and there should be no compromise on that. In order to achieve this, ALL relevant evidence on what was highlighted BY CAMPAIGNERS in the 1980s to be a “unique tragedy” for haemophiliacs and their families must be considered as opposed to being “cherry picked” to suit certain agendas or to carry out “damage limitation” and protect involved parties. It was this campaigning on the unique circumstances of haemophiliacs, later accepted by government, that led to the granting of the Special Status on which an ex-gratia payment was made in 1991. I pray this Inquiry will do its job thoroughly and leave no stone unturned. Haemophiliacs have been let down so badly on so many occasions, by so many people, they no longer know who to trust!
Much of the focus from the Inquiry and from campaigners has been on what government and other official bodies knew about the dangers of blood products and what they did or didn’t do about it. It is certainly crucial to look at Treasury and Department of Health documents from relevant time periods when action could and should have been taken and also the later government legal opinions on liability surrounding the 1991 HIV haemophilia litigation which ended in an out of court “ex-gratia” payment. Compensation based on “loss and need” was NEVER awarded.
HOWEVER in terms of the ensuing litigation, these historical government documents cannot be viewed in isolation from what government evidence was also exchanged and held BY solicitors in the legal “discovery” process that were acting FOR haemophiliacs, what legal teams knew and how they acted on this key material to assist their clients in achieving truth and justice (or not). To date, very little attention has been paid to this aspect by the Inquiry and hopefully this will change as the months go by.
I am one of the few haemophilia campaigners that has had the advantage of reading many government documents through large amounts of the “discovery” material exchanged between government and haemophiliacs legal representatives during the HIV litigation. This was some years AFTER my late husband Pete, a severe haemophilia signed a controversial Undertaking (which I called the “waiver”) which was part of the HIV settlement that ended in 1991. The waiver was a clause ensuring haemophiliacs could not take legal action for a further virus, hepatitis C, previously known as non- A, non- B hepatitis. Pete signed this without knowing he was infected with hepatitis C and as a later legal opinion highlighted, without “informed consent” as he was not told of the risks from this infection, nor were haemophiliacs shown key government documents at the time of the litigation showing alleged government negligence. I set up the campaign group Haemophilia North in 1994 which later became Haemophilia Action UK to fight for a public inquiry so all relevant documents could be considered. My husband was the first haemophiliac to obtain legal aid to challenge the hepatitis waiver legally.
It is important to note that solicitor Anthony Mallen of Deas, Mallen, Souter, Newcastle wrote a letter dated 29th June 1989 within the context of the HIV litigation to another solicitor attaching extracts from articles in which he highlighted that he “enclosed a list of 570 articles which deal with hepatitis as a consequence of blood products, particularly factor VIII being used”.
He goes on to say,
“The articles clearly show the risks in any of the hepatitis viruses being passed by Factor VIII. Obviously my own researches, which had a different slant, are reflected in the extracts. However examination of the articles simply by title may assist you with the assessment of the consequences of liver damage.
The list of articles was extracted from Index Medicus, a publication which lists virtually all medical articles throughout the world. I cannot, frankly, remember the number of articles that there were published regarding the hepatitis risk but I am not exaggerating in saying that it literally runs into thousands. The initial examination (which also covered such subjects as AIDS) totalled about 80,000 articles and an initial scan of the titles reduced that to about 1,500 which were of importance to me. From that 1,500 articles a more detailed trawl was made so as to exclude various foreign publications of which it could possibly be said that an averahe haematologist would not be familiar with.”
Over the years I have managed to save both solicitors documents and large tranches of government documents during several different time periods and fought for the government papers to be released into the public domain. Some were then published onto a Department of Health website and when this was taken down were later transferred to the National Archives at Kew following my writing of an awarded dissertation on Contaminated blood in 2006 referring to these papers. They are now available to the Infected Blood Inquiry, and through Freedom of Information Requests (FOIs) to all campaigners and other interested parties, though the failure to correctly reference to myself in terms of discovery and how they came to be saved may turn into yet another legal battle and forms part of the continuing “cover-up” where I am (conveniently for many) written out of Contaminated Blood history. A forthcoming documentary will address these concerns.
Over the past years since the Inquiry was set up in 2017, many of these saved documents have been used by the Inquiry QC’s to question witnesses and by haemophiliacs using FOI and their lawyers appointed to represent them at the Inquiry. It is important to note that government admitted on numerous occasions over the years in writing to myself and others to destroying many of these important documents but are now able to produce so many for the Inquiry only because I saved and returned them back to government, some directly to their legal department. However, government then went against the commitment given to my solicitor and I not to trash further papers by destroyed the accompanying letters from solicitor Paul Saxon where I had instructed him in relation to the return of certain papers. Fortunately I maintained copies of the letters for my own records. Other large tranches of paper evidence only survived because I fought for release of these documents from the 1990s including those that were used in the writing of the “Department of Health, Self Sufficiency in Blood Products in England and Wales Report: A Chronology from 1973 to 1991”. Other tranches were saved over the years with the help of the late Sir Patrick Jenkin who fought alongside myself for no further government documents pertaining to blood and blood products to be “inadvertently” destroyed. The surviving papers were later used in both the Archer and Penrose Inquiry Reports.
These saved documents have been well utilized by other haemophilia campaign groups including Tainted Blood to produce their Timeline as highlighted by the late Haydn Lewis who was quite open with me about acquiring this evidence through FOI after I had returned the papers to government. However since his death, all acknowledgement to Pete and I for our work to release these documents (which we ourselves had previously used for some years) into the public domain to help others has mysteriously disappeared and information about the TB Timeline has been retrospectively changed for the new updated website.
It is one thing for a document only to be available to a minority behind closed doors or under confidentiality arrangements and quite another for them to be freely available to anyone who applies under FOI. Where the Inquiry is at a disadvantage, is that it may not necessarily know when documents were FIRST available for public viewing which is very important. This knowledge is of course well known to campaigners like myself who were responsible for many of these documents first being released into the public domain. Also, when the Inquiry shows key documents on screen to witnesses during questioning there is no connection being made so far as to which of these documents were held by our lawyers in the 1991 litigation which is so important. Again this is often known to myself having viewed and copied key evidence from the officers of solicitors to inform the writing of my dissertation research and releasing them as highlighted in our BBC Newsnight film which was transmitted on April 17th 2007. Documentary film maker Mags Gavan (who worked on Newsnight alongside Sue Watts and I) continues to film my journey with the documents for a future film production examining the ongoing cover-up and continued attempts to block my evidence and rewrite history.
So regarding these documents, there are 2 key areas that are very important:-
- Who knew what and when of the risks of factor concentrate treatment in government and what was done by government and other bodies to protect haemophiliacs prior to their infection, what warnings were given and if infected to prevent further reinfection and what was done to educate and support haemophiliacs post infection. In addition, what evidence was shared by government with lawyers of haemophiliacs during the discovery process of the HIV litigation.
- What government evidence was held by lawyers for haemophiliacs regarding their infection in the process of discovery during the HIV litigation and what did legal teams do to bring forward ALL the key evidence and inform haemophiliacs of the FINAL legal opinion stating their chances of winning and what key evidence was WITHHELD from litigants (as I later discovered).
Some solicitors representing haemophiliacs in this Inquiry may be at a significant disadvantage having never fully seen ALL the evidence, that is from both government and that held by the HIV litigation lawyers. After the 1991 HIV litigation concluded, both sides agreed to destroy key documents within 8 weeks and the hepatitis waiver was put in place to prevent further litigation for HCV. One firm (for whatever reason) did not follow these instructions which led to my discovery that these documents STILL existed in that firm’s offices at least! So when I am watching evidence live streamed by video directly from the Inquiry, time after time I am confronted with documents that I KNOW were held by lawyers for haemophiliacs in 1991 and should have gone to court at that time. This connection is not yet being discussed by the Inquiry.
The very last legal opinion I saw before haemophiliac signed the controversial hepatitis waiver was an opinion that haemophiliacs’ chances of winning for those that had received US blood products had “significantly increased” and that crucial evidence highlighting the risks (known to be held by government, indeed ADMITTED BY GOVERNMENT in the discovery phase) had not been seen and considered by all lawyers acting for haemophiliacs and that basically it was now too late to legally address this issue. This was never shared with clients. A very concerning note from one lawyer read, “I can no longer lie to my clients”.
Truth can be inconvenient and disturbing. It may not always be as we imagine. Liability has to be carefully considered depending on what an individual or bodies may be liable for and during different time periods. Liability may sometimes be shared and include some unlikely partners.
So I would urge caution in jumping to conclusions as to alleged liability, who is responsible and over what and in which particular time period. I have for many years as a campaigner alleged government negligence but I believe there is a shared negligence in some areas. Going to court now may not be quite so straightforward as some legal firms might believe in terms of the currently “stayed” case in the High Court however other potential litigation on Contaminated Blood is a different story as it is separate to the original HIV litigation as new evidence from the US came to light through further litigation initiated by my husband in the following years.
Regarding the stayed case, I ask 2 key questions…
1) Have solicitors viewed and presented ALL evidence to the High Court, including what evidence was known and held by solicitors FOR haemophiliacs who litigated against government in 1991?
2) Have these lawyers been honest about actual FIRST dates of discovery of evidence and when evidence was FIRST put into the public domain as opposed to rehashed stories being put into the media by some irresponsible persons years AFTER the original discovery dates?
To come to evidence for this week, I note the campaign group Factor 8 has released some documents pertaining to discussions over the HIV litigation in the late 1980s/early 1990s which Jason Evans a new campaigner obtained through FOI. For me, there is nothing particularly startling there regarding government discussions/advice over means testing of victims, chances of haemophiliacs winning their case, and the hepatitis waiver but that is because I have also read our lawyers responses to these very same issues during the same time period and have known what documents they held for years!
I will be viewing Ken Clarke’s evidence with great interest this week, it will also be considered by myself in relation to what evidence our own lawyers acquired from and about government decisions and actions which they held and pondered over at the time of the HIV litigation which I understand began around 1987. In August 1990, New Scientist reported the following,
“There are, according to the Haemophilia Society, about 5000 haemophiliacs
in Britain. Of these, 1200 are now contaminated with HIV, after being treated
with the clotting agent Factor VIII which was subsequently found to be infected
with the virus. At the end of July, 207 of these had developed full-blown
AIDS, and 137 had died.
In May, Margaret Thatcher rejected an appeal from the Labour MP Alf
Morris that compensation should be decided through a negotiated settlement.
Last week, it was reported that the same request had been made by Sir Donald
Acheson, the government’s chief medical officer, but was being opposed by
the Treasury – and health secretary Kenneth Clarke – on the grounds that
the government might escape legal liability.“
The 1991 litigation concluded in a far from satisfactory result for my husband and the estate of his brother Stephen who died of AIDS in 1986 even before litigation began.
Years later on the 3rd March 2018 the Guardian reported,
“In 2007, after a freedom of information request, Tainted Blood received hundreds of documents relating to the scandal. In one, dated 22 January 1985, Clarke had written: “Before we all panic further, it is presumably the case that the ending of the collection of blood from homosexuals greatly reduces the risk from blood collected in this country. Also, as only haemophiliacs have died and they may have had factor VIII from American blood, is it the case that we have not had one Aids fatality from blood donated in this country yet? Do we need this and heat treatment of the blood?” The suggestion seemed to be that heat treatment may be one expensive precaution too many. Not surprisingly, the discovery of this letter many years later caused great hurt in the haemophilia community. Gorman spits out the phrase: “Only haemophiliacs.”
“Between 1988 and 1990, Clarke was secretary of state for health. In 1990, he was advised by the then chief medical officer, Sir Donald Acheson, to settle claims with those affected out of court, to prevent the government being forced to hand over sensitive documents. It was reported at the time that Clarke was reluctant to settle, insisting haemophiliacs had to prove their case in court.“
These were part of the same documents I had saved, following the writing of my dissertation and released into the public domain, making them available through FOI.
In this Inquiry, we need the truth, the whole truth (as far as it is available after all these years)… and nothing but the truth however strange and concerning that truth may turn out to be! Alleged liability may not only lay with government and related bodies but with lawyers representing haemophiliacs who sat on the very documents showing alleged liability that they failed to consider and act upon, (some of which I submitted and are now being used by the Inquiry) failing to obtain “informed consent” in relation to the hepatitis waiver and on their own admission, lying to their clients! When government settled with an ex gratia payment, haemophiliacs were only weeks away from hearing these allegedly incriminating documents being produced to a court, some very damning indeed. Much delayed and “SUBSTANTIAL” compensation must now be paid to haemophiliacs and their loved ones although this comes decades too late for many haemophiliacs already deceased. As Health Minister Anne Milton stated to fellow campaigner Colette Wintle and I during a meeting at Westminster in 2010, “haemophiliacs are a unique patient group requiring a unique solution.” We wait to see what is finally delivered!
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”.