Peter Longstaff (deceased) and wife Carol Grayson who began their legal fight to challenge the 1991 HIV haemophilia litigation and hepatitis “undertaking” in 1994
On World AIDS Day I have published an article in memory of all the members of the haemophilia community infected with HIV and hepatitis C through blood and blood products who died without ever receiving justice despite their long and hard efforts to litigate for their infections during the 1980s which ended in an inadequate out of court “ex- gratia” payment in 1991. This payment did not take into account loss and need in the legal sense as should have happened with a proper compensation claim. For over 2 decades the conditions of this settlement itself have been challenged by those who survived and their relatives after many documents were unearthed several years after the 1991 litigation showing that key evidence was never shared with litigants. This is the history of the very first legal challenge post 1991 settlement.
Peter Longstaff who died in 2005 was the first HIV positive haemophiliac to begin a legal fight challenging the original 1991 HIV settlement from the Department of Health as far back as 1994 alleging key evidence was withheld from haemophiliacs and their families including by their own lawyers. Haemophiliacs who suffer from an inherited bleeding disorder where the blood does not clot properly became infected with HIV and hepatitis viruses following treatment with factor concentrates often made from plasma sourced from US prisoners and “skid-row” donors who unlike volunteer donors in the UK were paid for their blood.
Grayson and Longstaff set up their Campaign group Haemophilia North in 1994 later changed to Haemophilia Action UK to reflect the ever wider remit as haemophiliacs from all over the UK approached them for support and advice.
Longstaff was also the first to obtain legal aid to challenge a controversial hepatitis “undertaking” (sometimes known as the waiver or contract) in the 1991 HIV settlement which meant haemophiliacs were unable to litigate for infection with an additional virus, hepatitis C. Haemophiliacs were made to sign away their rights not knowing they were already infected and did not know at the time of signing that many had been secretly tested for hepatitis C and positive test results withheld sometimes for years. The undertaking read,
This DEED of undertaking is made the xxxxxxxxx day of xxxxxxx
1991 by xxxxxxxxxxxxxxxxxxxx of xxxxxxxxxxxxxX.
In expectation of receiving from the Macfarlane (Special
payments) (No.2) Trust the sum of Exxxxx I undertake with the
Secretary of State for Health that I will not at any time
hereafter bring any proceedings against the Department of
Health, the Welsh office, the Licensing Authority under the
Medicines act 1968, the Committee on Safety of Medicines, any
district or regional health authority or any other Government
body involving any allegations concerning the spread of the
Human immuno-deficiency virus or hepatitis viruses through
Factor VIII or Factor IX whether cryoprecipitate or
Factor 9 concentrate administered before 13th December 1990.
(Then the signature of the person and a witness)
A copy of this appears in the Appendix of my 2006 dissertation on page 55
In a reply to a letter sent to the Department of Health by Longstaff’s wife Carol Grayson questioning the hepatitis undertaking in 1996, a Department of Health minister John Horam writes, “I enclose as requested, a copy of the reply sent to Mrs Grayson by an official on behalf of the Secretary of State. That reply sets out the Government’s position which has also been explained in recent debates in the House.” The letter goes on to say,
“although it is correct that more information on the natural history of hepatitis C is becoming available at the time of the HIV haemophilia settlement it was known that in some cases non-A non-B hepatitis, as hepatitis C was then known, could lead to serious liver disease and some deaths had already occurred in UK haemophilia patients.
It is true that haemophilia patients infected with HIV, who accepted payment under the Government’s scheme, were required to give an undertaking not to bring any proceedings at any time against the Health Departments, health authorities or any other body involving any allegations about matters of policy or operational concerns concerning the spread of HIV or hepatitis viruses through blood or blood products.”
The letter also discussed trials of first and second generation “anti-hepatitis C tests” from 1989 and advice given at the time not to introduce a test until 1991 due to too many false positive results. Grayson and Longstaff also repeatedly challenged this decision as other European countries used the earlier test introducing it in 1989 preferring to “err on the side of caution” with regard to safety in testing donor blood even if it meant destroying some blood which had given a false positive result. There is evidence however that some haemophiliacs were used to test out the first tests from 1989 and in some cases results may have been withheld.
There was a delay in replying to Grayson as Horam claimed he had not received her original letter so the couple’s MP Jim Cousins submitted it for a second time. This was the first of many letters sent by Grayson which were “lost” by the Department of Health. This included numerous correspondence on the undertaking over 2 decades.
In 2000, in a letter published in the British Medical Journal, Grayson wrote,
- We are NOW aware of the reason why a hepatitis waiver was included in an HIV ex-gratia payment, an attempt to silence haemophiliacs and prevent future litigation should a haemophiliac survive Aids.
- We are aware that many haemophiliacs were misinformed both by the Department Of Health and haematologists with regard to the hepatitis C virus in 1991 being told “it was nothing to worry about” and “less of a problem than hepatitis A or B,” despite hundreds of articles /research papers, books, stating a very different picture.
- We are aware that many haemophiliacs were not even tested for the hepatitis C virus until 1994 despite accurate tests being available at a much earlier date.
- We are aware that haemophiliacs are frequently told by haematologists that the “benefits of treatment outweighed the risks.” In Newcastle alone out of 105 patients tested for HIV, 95 tested positive, 77 are now dead, 95% of those surviving haemophiliacs have hepatitis C usually in addition to hepatitis B. Very successful treatment!!!
One of the lawyers acting for haemophiliacs in the 1991 HIV litigation told the Newcastle Journal that the undertaking had been included so government could avoid paying out for a second virus but didn’t explain why legal firms had not discussed hepatitis C infection with their clients at the time and the implications of signing this agreement.
Grayson and Longstaff went on to obtain both a legal opinion on the undertaking from a former Head of the Bar Association and an opinion on the knowledge of hepatitis C at the time of signing from a top Professor studying blood coagulation and hepatitis in haemophiliacs. These opinions were based on documents from the 1991 HIV litigation which Grayson and Longstaff discovered and accessed in later years.
Once government was informed that the hepatitis undertaking would not stand and could not be “informed consent” the Department of Health swiftly devised the woefully inadequate Skipton fund financial scheme aided by a Hepatitis Working Group who submitted their proposals to government. That group included the couples own QC who only told them AFTER this was established and that he was working with the Haemophilia Society. This was hugely problematic as Grayson and Longstaff had already pointed out that the Society at that time was receiving money both from US pharmaceutical companies named in litigation and government and was perceived as having a “conflict of interest”. In the US their equivilent of the Haemophilia Society was actually named as the 5th defendent in legal cases along with the pharma companies supplying factor concentrates.
Haemophiliacs rebelled against the Society and had to campaign on their own for an entire year on hepatitis C before the Society finally launched its weak campaign for justice in 1995…. but only for haemophiliacs with hepatitis C and not haemophiliacs with HIV who also had hepatitis C. This created huge divisions within the haemophilia community tearing families apart in some cases, families that to this day do not speak to each other. The Society had also played down the dangers of hepatitis C in their own minutes in the early 90s telling a designated group that was set to investigate hepatitis C to step down as it was “nothing to worry about” and those infected were often termed the “worried well”.
The Haemophilia Society finally released an unreserved apology in 2017 through Jeff Courtney a new member of staff not implicated in past mistakes. He did so after being approached by Grayson and her campaign colleague Colette Wintle who talked him through the background history so he was able to do this. He later e-mailed thanking them for their help. This move was an attempt to separate the past action or inaction of the Society from the present. The apology can be read here,
The astonishing move by the couple’s legal representative to work on a financial proposal for hepatitis C (which became the Skipton Fund) had the effect of blocking haemophiliacs going to court for compensation for Hepatitis C, a move strongly criticized by Grayson and Longstaff who raised the issue of “conflict of interest” directly with their QC at the time.
The whole reason for challenging the undertaking and seeking legal and medical opinions in the first place was to get to court to challenge the original 1991 settlement and undertaking to fight for proper compensation which to this day has been denied to haemophiliacs for both HIV and hepatitis C. Grayson and Longstaff were informed at that time that it would cost more for haemophiliacs to launch a legal challenge than they would win quoting “cost benefits analysis”. This would be an obstacle that any further challenge by haemophiliacs would have to overcome and if that happened then serious questions would be raised over the original advice given to Grayson and Longstaff in their much earlier attempt at litigation. Cost benefits analysis was based on amounts haemophiliacs received for HIV through the ex-gratia payment scheme.
It must be noted that the government were weeks away from having to go to court with all their documents when they decided to make an out of court “ex-gratia” payment to haemophiliacs for HIV in 1991. By lawyers for haemophiliacs agreeing to this settlement it quashed any opportunity for haemophiliacs to show alleged negligence and failures in duty of care leading to infection. What haemophiliacs were never told at the time was that the very last opinion the night before signing the undertaking was that all the evidence had not been considered by all the lawyers who were only just realizing the implications of some of the documents and that haemophiliacs chances on winning related to imported treatment had “significantly increased”. A solicitor’s note seen by the couple and their (then) legal representative Denis Whalley read, “I can no longer lie to my clients” a copy of which was submitted to the Archer Inquiry. (Whalley was later struck off by a Solicitors Disciplinary Tribunal after being found guilty of conduct unbefitting a solicitor) see following article,
We do not know what has happened to many of the documents that witnesses submitted to the Archer Inquiry despite repeated efforts to locate them through Vijay Mehan, the Secretary to the Inquiry. Had haemophiliacs been given key information pertaining to the original HIV settlement and the dangers of hepatitis C at the time of the signing of the Undertaking they would have had to seriously consider whether or not to take the ex-gratia payments. Litigants were under great pressure to sign being told most did not have long to live and if all did not sign, no-one would receive a payment.
The hepatitis waiver appeared to also have the additional impact of preventing haemophiliacs with hepatitis C but without HIV getting to court. One haemophiliac with hepatitis C named Peter Mossman had a legal case going for many years but finally had his legal aid withdrawn. Grayson assisted him and his lawyers but both grew concerned after the case appeared to be blocked. Mossman has now been told several years later in writing he now has a good chance of winning his case after another group of solicitors took over from the a previous firm and reviewed the evidence with fresh eyes. So why were 6 firms of solicitors previously unable to progress Mossman’s case?
In 2006 Grayson wrote her research dissertation on contaminated blood challenging government’s so called “definitive” report on contaminated blood entitled, DOH Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991. Grayson was awarded the Economic and Social Research Council (ESRC) Michael Young award. The dissertation included reference to their challenge on the hepatitis undertaking which was also highlighted in the British Medical Journal and the award winning Newcastle Journal “Bad Blood” campaign and other media as well as witness testimony to the Archer Inquiry. In her 2006 dissertation Grayson wrote,
In 1991 Justice Ognal the presiding judge in the HIV litigation had advised that the Government must submit all their blood policy documents to be viewed in court. On hearing this opinion and after years of legal wrangle the Government decided to settle claims out of court providing haemophiliacs with an “ex-gratia” payment and avoided any embarrassment of having potentially damaging documents revealed to the general public. Much of this evidence which was excluded from the SSR (Self Sufficency Report) and went unseen by haemophiliacs for many.years was recalled by the Government in recent months and they have now decided which papers to release to the public and which documents they wish to withhold on commercial grounds under the FOI Act. This goes against the Government statement that all the evidence pertaining to the infection of haemophiliacs is already inthe public domain.
As Margaret Unwin of the Haemophilia Society is keen to point out,
“The Government has already admitted that it has shredded many of the documents that refer to the time period in question, but that still doesn’t explain the strange assortment of references they have made in the report- ranging from clinical journals to the Sun Newspaper. (She goes on to say) This document is greatly flawed and has, I believe been produced to deflect the call for a wide-ranging public inquiry into the whole issue. The report has been produced internally, informally and very poorly by the Department of Health. It is not public, not an inquiry and merely reflects the
views of the Department itself.” (Haemophilia Society Website, 26″h Feb, 2006)
In my dissertation I also highlighted the following,
In 2002 as part of a legal challenge to Government I requested a chronology of the history of NANB hepatitis from a medical expert in order that my husband Peter Longstaff could challenge a “hepatitis waiver” that appeared in the 1991 HIV litigation (see section Testing For HIV And Hepatitis C: Delays, Devious Deals And Dangerous Practice). Professor Eric Preston a specialist in liver disease who is well respected for his research into hepatitis in haemophilia patients provided a report for Queens Council
(QC). When the SSR (Self-Sufficiency Report) was published in 2006 1 was able to compare Preston’s findings to those in the SSR and discovered several discrepancies. The Government report fails to recognize the seriousness of NANB hepatitis until 1982/83 yet Preston reported for
Queens Council that back in 1978,
“Even at that time, our patients exhibited a wide spectrum of chronic liver disease, including hepatic cirrhosis. We expressed the view that the chronic liver disease was attributable to non-A, non-B hepatitis. We concluded that histological liver disease is common in haemophiliac patients and is probably related to clotting factor concentrate replacement therapy.”
Since then I have discovered evidence that pre-dates Preston’s findings.
Copies of key government documents that Grayson discovered and accessed for her dissertation (and which the government claimed to have destroyed) were eventually returned to the Dept of Health in 2006 on Grayson’s instruction to solicitor Paul Saxon of Blackett, Hart and Pratt (documented in Hansard) and released in batches on the DOH website. During changes to the website, these documents were transferred to the National Archives at Kew for access by the public and are now widely used by other campaigners though often unreferenced. Grayson has returned several batches of documents over the years (which will come under different reference categories) in addition to those in 2006.
On 24th February 2009 the Newcastle Journal stated,
“THE Bad Blood campaign was launched by The Journal in 2000.
We teamed up with Haemophilia Action UK, to demand a public inquiry into how and why contaminated blood products were allowed into Britain, a mistake which led to the deaths of 78 haemophiliacs in the North-East.
Peter Longstaff, of Jesmond, Newcastle, won legal aid to fight a controversial waiver from the Department of Health which he signed in 1991”
The DOH report was finally disgraced and withdrawn in 2017 using Grayson’s evidence. Government used this extremely flawed report as a tool to both deny compensation to haemophiliacs and support recent scrapping of Trusts and transfer of payments to haemophiliacs over to English Infected Blood Support Scheme (EIBBS). Grayson has written to the Department of Health asking for reconsideration of all decisions made using the withdrawn report but so far government have declined to act.
Grayson will give evidence and produce the relevant documents regarding this episode in contaminated blood history at the Infected Blood Inquiry into how haemophiliacs became infected with HIV and hepatitis viruses following treatment with factor concentrates. Some haemophiliacs also infected other family members before knowing their positive test results.
Collins Law solicitors and client Jason Evans (son of a haemophiliac) are attempting to make a further legal challenge launched in July 2017 (24 years after the first challenge) using the same legal arguments as their predecessors Grayson and Longstaff according to press releases and recent media. Collins repeat the arguement stating, “at the time of the settlement, the Government effectively decided not to be transparent and it withheld documents that could (and should) have been made available to the victims”. Yes this happened and new evidence is still coming to light as government release documents under the 30 year rule that were previously withheld. However Collins Law fails to also highlight that lawyers FOR haemophiliacs received many key documents from government during “disclosure” which THEY failed to discuss with their clients and were not seen until years AFTER the 1991 settlement.
Government again withheld key documents from the 2006 DOH Self Sufficiency Report as Grayson showed clearly in her dissertation and Lord Warner championed a misleading narrative to block the recommendations of Lord Archer including “compensation on a parity with Eire” by falsely claiming Eire paid out on legal liability. This was not true as Grayson showed using documents obtained from Ireland in 2004 by Grayson and her colleague Colette Wintle. Eire paid on on the grounds of “loss and need” at court compensation levels for “extraordinary suffering” BUT without going to court or admitting legal liability. These documents were later used to win a Judicial Review by Andrew March in 2010 but the government still failed to compensate changing the goalposts yet again.
The Collins Law case was “stayed” this week until more evidence can be heard from those infected and affected at the Infected Blood Inquiry. Collins Law reported that “as part of the stay, the deadline for registration to join the Contaminated Blood Products Legal Action has been extended to 31st May 2019.”
Confusion arose with some media incorrectly reporting this action as if it was the first challenge to the 1991 HIV litigation and failing to provide balanced articles detailing the long history of Longstaff and Grayson’s challenge to this controversial settlement.
Sophie Borland of the Daily Mail rehashed a story much of which is 24 years old incorrectly portraying it in a headline as “New Tainted Blood Scandal”. She refers to the hepatitis undertaking writing about the contract stating,
“Victims of the contaminated blood scandal were persuaded to sign away their legal rights without knowing they had a second deadly condition, the Daily Mail can reveal.
More than 1,200 patients who had been infected with HIV were forced to sign a contract with government officials promising to drop all legal action.
After they signed, they were told they had also been infected with hepatitis C.
The contracts were signed in 1991 and victims were each paid a cash sum of about £24,000, depending on their age, marital status and whether they had children.
The Department of Health was aware in 1989 that the patients had hepatitis C – which causes severe liver damage – but didn’t tell them until after the contracts had been signed. Patients with both HIV and hepatitis C tend to die much more quickly than those with just one of the viruses.”
Borland visited Grayson recently in the presence of her lawyer Ben Harrison of Milners Law firm in Leeds and admitted this was clearly not new and was shown the 1996 John Horam letter (one of many on the undertaking) and told the history of the legal challenge but the Daily Mail has yet to issue an apology and correction. Government lawyer and lawyers for haemophiliacs were aware from documents in the 1991 litigation that some UK haemophiliacs had died from non- A, non -B (hepatitis C) as far back as the 1970s (not only 1989 as Borland states) but did not tell them. At that time if a haemophiliac tested negative for hepatitis A and B then the hepatitis deaths were put down to non-A, non- B hepatitis. Borland refers only to the single person’s payment of £24,000 and not the married person’s payment. She also includes reference to the undertaking.
Over the years Grayson has repeated alleged that her research, ideas and work are constantly being plagiarized without reference to original documents such as her dissertation and other writing of which she has copyright. The following P.org article looks at the definition of “plagiarism”.
According to the Merriam-Webster online dictionary, to “plagiarize” means:
- to steal and pass off (the ideas or words of another) as one’s own
- to use (another’s production) without crediting the source
- to commit literary theft
- to present as new and original an idea or product derived from an existing source
See following link,
This is not only disrespectful to a person that has campaigned for justice for many years for the haemophilia community and to the deceased who fought so hard for justice but can have serious legal consequences when Timelines are changed and old evidence is passed off as “new” or “newly discovered” as it colludes with those that abused the haemophilia community and aids them in denying wrongdoing.
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 former Registered Mental Nurse with a Masters in Gender Culture and Development (Distinction). 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”.