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 from the late 1980s and throughout the 1990s, documents that were a key part of the haemophilia HIV litigation. Haemophiliacs became infected with HIV and hepatitis viruses B and C during the 1970s and 80s when factor concentrates used to treat haemophiliacs with an 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 on document destruction 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.

Evans begins by focusing on government’s Fear of Litigation. (Since he began campaigning in 2017, Evans frequently uses documents Grayson has unearthed though without referencing her and changing timelines of discovery.)

It is important to note that in the late 1990s, media articles on blood litigation were already evident in the global press and had been for some years. In the UK the Northern Echo ran a notable campaign fighting for compensation for haemophiliacs in which Grayson’s family took part. This particular American article below corresponds to the year Evans begins in terms of his history of trashing of documents and is from Grayson Media Archives. It shows that here was some thoughts in the US of suing blood banks which collected plasma not only the pharmaceutical compnies themselves. As well as looking at the impact of AIDS, hepatitis C ( non- A, non- B) also known as HCV was 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 27^th, 1989)

https://www.nytimes.com/1989/04/27/us/health-medical-liability-blood-banks-facing-hundreds-of-aids-suits.html

Later that year, Evans details the following from archived documents as a first test for hepatitis C becomes available,

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) launches 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 hep C 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. This was at the same time as all those involved in the HIV litigation were playing down the dangers of hepatitis C later confirmed by Mattias Kelly QC in the early 2000s who reviewed hepatitis documents from within the 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 HIV 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 hep C were being kept from HIV litigants though lawyers, government and treating doctors were aware that 99% of haemophiliacs with HIV were also infected with HCV and there had already been deaths..

In 1990, solicitors acting for haemophiliacs discussed in their own records suggesting to government that hepatitis C infection should be subject to an undertaking by haemophiliacs not to take legal action at any stage for hepatis viruses as a way of negotiating with government so that they did not take state benefits into account when a settlement was reached. This was a shock to discover years later as Grayson and her husband Peter had assumed this had all come from the government side. This initiative was seen as important by government who also favoured an undertaking.

Grayson highlights the following programme which appeared on TV that year that again would have raised alarm bells with government regarding liability. (This was provided by Tainted Blood haemophilia group that set up in 2006.)

The Cook Report: Profits before patients (Tainted Blood, Youtube link, July 23^rd, 1990)

A year later, Evans points out the following in 1991,

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)

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 pointing out,

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 on in the 1990s after finding out her husband was positive for hep C in 1994 though tested years earlier without “informed consent” and the result withheld. Grayson became aware that other European countries had introduced a test for hepatitis C earlier choosing to “err on the side of caution”. The UK government delayed introducing the first generation test in 1989 claiming it produced too many false positive results and wrote to Grayson telling her this in 1995. Waiting for the 2nd generation test (late 1991) also avoided testing haemophiliacs before they signed the hepatitis waiver in the Spring of 1991 which would have raised alarm bells if they had been tested and told their result in 1989.

By late 1991/1992 as Evans details, government began to be aware of criminal cases in France regarding their haemophiliacs 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, an order is made that both sides of the litigation should destroy papers within 8 weeks of the end of the litigation. Some documents appear to have been saved 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. (I know this as someone who saw 69 boxes of evidence years later that escaped destruction and some of which I was able to save, return via lawyers to the Dept of Health which were later transferred to the National Archives, Kew for others to access via Freedom of Information requests.)

Government awareness of litigation and criminal cases would now have increased as articles like this one 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 3^rd 1991)

http://articles.chicagotribune.com/1991-11-03/news/9104080918_1_michel-garretta-blood-scandal-national-blood

Evans continues his chronology,

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.

https://www.independent.co.uk/news/uk/i-am-a-scapegoat-i-am-innocent-steve-connor-talks-to-the-cambridge-professor-facing-two-years-in-a-1559544.html

Evans also highlights the following,

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, 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 as they were still hiding the fact that they downplayed hepatitis C to HIV haemophiliacs if they mentioned it at all. In effect the HIV lawyers would have been fighting against themselves. How could they litigate for hepatitis C for Mossman when they made out it was “no big deal” for haemophiliacs with HIV? This had the effect of not only stalling Mossman but a case to overturn the hepatitis waiver which would be launched by Grayson and Longstaff the following year (1994).

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 and attention is now turning increasingly towards looking at litigation for hepatitis C. Grayson noted the following from her Media Archives,

AIDS suit accuses companies of selling bad blood products (New York Times, October 4^th 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 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 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 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 hep 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 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

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

Contaminated blood kills 12 (Independent, Nov 16^th 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 16^th 1994)

http://www.independent.co.uk/news/hepatitis-c-may-bring-repeat-of-haemophiliacs-aids-battle-1439839.html

and

Hepatitis C victims ready to sue (Independent, November 18^th 1994, Hardcopy Archived)

So why has Evans ignored 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,

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

https://www.dailymail.co.uk/news/article-6300933/Patients-infected-HIV-paid-24-000-sign-away-rights-sue.html

They 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 but is advised that any documents in dispute could be tied up for months while the content is disputed and Grayson’s first priority 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 interested in a public inquiry before him which is absolute nonsense as campaigners that set up in 1994 were all calling for a public inquiry as well as compensation at that time.

What Evans may not realize is that in the 2000s, the Skipton Fund was eventually set up to give ex gratia payments to those with hepatitis C to keep Longstaff’s waiver 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 as below. He 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

Going back to the 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 different, periods, childbirth and menopause.

Returning to Evan’s chronology 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 now under great pressure from its members 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.

In June of 1995, Grayson notes the following article from her Media Archives, a warning to government,

Hepatitis C and Haemophilia: Coinfection with HIV is common and will demand great resources (BMJ, June 24^th 1995, Hardcopy Archived)

Again, it comes as no surprise that government would want to destroy more key files,

On 13th December 1995, George Mudie (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.

https://hansard.parliament.uk/Commons/1995-12-13/debates/c1f6179f-17fd-4d9c-a0e2-0b3c039e5165/Haemophiliacs

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 receiving information on this 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 HIV. Grayson is furious as she points out the 1991 settlement DOES NOT include paying out for hepatitis C for those haemophiliacs with HIV. This increases frustrations with 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 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. Once that happens, government know there are no restrictions for litigating for hepatitis C. 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 submitting evidence in writing.

On the 3rd February 1996 Grayson wrote to Stephen Dorrell as follows, see letter extract below

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.

On 16th February 1996 Grayson wrote again to Leonard Levy as follows, (address 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 concerns over disclosing documents as haemophiliacs question 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 1^st 1996)

https://www.newscientist.com/article/mg15020322-200-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/

and

Blood, Money and AIDS: Hemophiliacs Are Split; Liability Cases Bogged Down in Disputes (New York Times, June 11^th, 1996)

In December 1996, Alf Morris of Manchester stated the following regarding the need for financial help for those haemophiliacs infected with hepatitis C,

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.

https://hansard.parliament.uk/commons/1996-12-11/debates/3d9efb0f-2b95-433c-beb3-e9d61fcad341/Haemophiliacs(Compensation)

On the 13th August 1996, Longstaff’s then solicitor 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.

Evans highlights the following instructions on the ethics of testing and 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,

Final Krever report paints picture of regulatory dysfunction

• Wayne Kondro

Published:December 06, 1997DOI:

https://doi.org/10.1016/S0140-6736(05)64294-8

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).

In 1998, Grayson highlights the following from her Media Archives,

Legal battle to get millions for blood victims (Newcastle Journal, January 19^th 1998, Hardcopy Archived)

She continues to write to Frank Dobson (Health) regarding HIV, hepatitis C and Recombinant. Whole blood cases are progressing and don’t have the hurdle of the waiver to overcome. However legal cases of haemophiliacs with hepatitis C without HIV are facing great difficulties over legal aid funding and are being shut down, Haemophiliacs are becoming suspicious of ehy 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 hep C, this is from her Media Archives, 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 9^th 1998, Hardcopy Archived)

Throughout 1998 Grayson is 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 govt on hepatitis C as he has done since 1994. This again 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 as the government go all out to block compensation for haemophiliacs for hepatitis C having destroyed many documents that could have helped their case for compensation.

Government rejects compensation for haemophiliacs (BBC July 28^th, 1998, Hardcopy Archived)

However as ever haemophiliacs continued their fight for justice and the following two articles appear in 1999 (Grayson Media Archives) where Al Morris supports financial support for ALL haemophiliacs infected with hepatitis C.

Tale of two viruses: Alf Morris on the forgotten haemophiliacs (The Times, June 6^th 1999, Hardcopy Archived)

and

Haemophiliacs pursue compensation fight (BBC News, November 21^st 1999, Hardcopy Archived)

Grayson and Longstaff refuse to give up 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 compensation. Although the Journal is no more, 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 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”.

The Newcastle Journal ran an honest and genuine campaign for truth and justice awarded for its impact which was supported by Lord David Owen (former health minister) and Lord Alf Morris of Manchester (World’s first minister for disabled person.)

(Image via the Journal)

The decades long fight for truth and justice is at the heart of the now high profile Contaminated Blood scandal campaign…. at least for GENUINE campaigners.

Haemophiliacs born with an inherited bleeding disorder became infected with HIV and hepatitis viruses during the 1970s and 80s from factor concentrate products injected into veins to help their blood clot. Much of this treatment was imported from the US and manufactured from the plasma of “high-risk” donors such as prisoners, homosexuals, sex workers and “skid-row” donors paid to donate.

During the 1980s when haemophiliacs first became aware of their HIV infection and began to litigate, many of those infected and affected were not public due to terrible stigma and discrimination. It was left to a few brave individuals to put their head above the parapet to try to change attitudes, call for a public inquiry and for much needed compensation as haemophiliacs and sometimes their infected partners became too ill to work and many were dying of AIDS. This left behind many bereaved partners, often now ill themselves that had given up good jobs and careers to care for their loved ones until their death. Some partners lost their homes after suddenly being plunged into poverty.

The early to mid 1990s was a time when haemophiliacs first began to learn that they had also been tested for hepatitis C (often without their informed consent as this author Carol Anne Grayson and her husband Peter revealed) and became aware for the first time that they had positive test results in their medical records. Around 99% of those haemophiliacs with HIV were also infected with hepatitis C and many in addition had been infected with hepatitis B.

During the early 1990s, the groups campaiging for justice for the haemophilia community were as follows, Birchgrove, Haemophilia Action UK, Manor House Group and Colette Wintle (Independent). It wasn’t until years later that they were joined by new groups, Tainted Blood, Contaminated Blood Campaign and Positive Women. Finally they were joined by Factor 8 Group in 2018 and several other newly formed offshoots.

Although many haemophilia campaigners are hard working, genuine and devote huge amounts of precious time and energy working to achieve their campaign goals, since the Infected Blood Inquiry was set up in 2018, it has become apparent another kind of campaigner has emerged to muddy the waters and whose actions have come under serious question. Both the national Haemophilia Society and some lawyers representing their clients at the Inquiry have also discussed their awareness of this fact. Sadly those dedicated to truth and justice have noticed the arrival of “the scammer”, “the exaggerator”, “the pathological liar” and “the plagiarist”. In addition, there are also some “magpies” circling for financial gain that are unlikely to meet the criteria to join a compensation scheme. This is not so unusual as it was seen in other campaigns too such as Grenfell, see below,

The fraudsters who took advantage of Grenfell

https://news.sky.com/story/the-fraudsters-who-took-advantage-of-grenfell-11559444

and

Separating fakes from 9/11 victims

and

It spiralled out of control{ The fantasists who pretended to be 9/11 survivors

https://www.independent.co.uk/news/world/americas/9-11-fantasists-survivors-world-trade-center-b2164064.html

The magpies can be dealt with quite quickly by tightening up the application process for new registrants and having a baseline criteria of evidence that is required to apply to a compensation scheme. The process must not be complicated and should be straight forward but at the same time too much of a “light touch” is an insult to those infected and affected that have had to go through previous application processes which in some cases were quite detailed and required a certain level of documentation. There will no doubt be delays for new registrants as they gather the necessary evidence required but that shouldn’t also delay those that are ALREADY registered on the schemes, in some cases for over 30 years.

Those that have fought for over 3 decades often express that it sometimes feels as though the world and his dog have suddenly arrived to claim compensation…and the directly infected and their infected and affected partners are now being forgotten. Another lament is clear, had these new arrivals taken the time to join or at least support long standing campaigners earlier instead of finally appearing on the scene just when money is on the table, the campaign could have built more pressure on government to compensate a lot earlier. Also it would have relieved the pressure on those that had endured long and gruelling time periods of activism that had added to their physical and psychological suffering.

All legitimate claimants/family members must of course be compensated including parents and children however as the focus is moved ever further away from those actually infected and their infected/affected interdependent partners, the need for proportionality arises. Claimants that are not infected, have never been long term carers to an infected person, are fit to work and have many years ahead of them are in a very different position to those at the latter part of their lives infected and affected that are in poor health and have been unable to work for many years.

Then there is what to do with the liars and the plagiarists, the malicious mischief makers seemingly willing to throw haemophiliacs’ long standing campaign for truth and justice under the carpet? Firstly, its important to value, respect and acknowledge the actions and achievements of GENUINE haemophilia campaigners. These dedicated groups and individuals have made significant personal sacrifices over very long time periods and often invested their own money to keep the Contaminated Blood campaign going. They have given up their anonymity to share harrowing stories in the press and spent years in libraries and dusty archives researching their history and securing key evidence in order to help the whole haemophilia community. This was a lot harder and without doubt more costly before the arrival of the internet, special phone rates and online websites were set up giving access to historical and current documents.

Tragically now however we are also seeing the rise of “the opportunist” and the “career campaigner” who claim to fight for truth and justice but the reality couldn’t be further from the truth. These are so called campaigners that have abandoned their ethics if they ever had any. They lie, steal the work of others without referencing, cancel out long standing campaigners, claim “exclusive” media stories that have in reality been published in some cases 2 decades earlier. Some of the followers of these false messiahs will also make bold declarations that “it doesn’t matter who does what and when as long as there is a positive result”. It does matter very much for without truth there is no justice.

The idiots who proclaim this, don’t realize for example that giving fake timelines of discovery of when evidence was FIRST discovered and placed in the public domain could allow those that harmed haemophiliacs off the hook. For example if a prominant politician was given key documents 20 years ago and failed to act on them, it doesn’t help if a scammer then claims they just found the same documents in 2017. The very least we need is some accountability for people to own up to their actions and mistakes and say they are sorry for ruined lives.

Lying to vulnerable persons infected and affected can be catastrophic risking the trust of those that have already been deceived and let down so many times. It is neither productive nor ethical and stifled truths often emerge when least expected.

This “couldn’t care a less” attitude is in conflict with what the Cabinet Office has confirmed to this Grayson and that is that correct timelines, dates of discovery of documents are very important and discussions on this are ongoing.

A well know Lord has revealed to Grayson he is very angry at the “Johnny Come Latelies” that are far too often sabotaging the haemophilia campaign for truth and justice aided by unscrupulous media with too close ties to those linked to the harm and cover-up.

Since 2018, the start of the Infected Blood Inquiry, there has been a huge number of fake stories and falsification of timelines in the media promoting known plagiarists. There are clearly disinformation campaigns running in the media. Long standing campaigners are calling for an investigaton into how so much of the media, digital, print, TV and audio could have contributed and promoted such false narratives on Contaminated Blood.Whilst some is down to ignorance and misinformation, there are very propaganda campaigns running that would have given Geobbels a run for his money as well as deeply questionable books. There are 2 new books in particular that have been published that are inaccurate, cancel out huge swathes of important evidence and time periods and fail to reference correctly. The editors are now being contacted to address these issues. Documentaries have also been made and awarded that do little else but rehash the work of others and sell long held evidence as “newly discovered” with no context or respect for the original writers and researchers.

At the start of the Inquiry, Grayson and her campaign colleague Colette Wintle made representation to Sir Brian Langstaff, via their lawyers and were granted the right to representation from a separate legal firm Milners that wasn’t one of the four firms initially appointed. This was due to 2 main points, firsly, the importance of upholding the “Special Status” of haemophiliacs on which the 1991 HIV “ex-gratia” payment was made and whose criteria also fits haemophiliacs infected with hepatitis C. Secondly, a “conflict of interest” related to claims of excessive plagiarisation of awarded research and rehashing of old stories in the media without context or reference. Again we have seen fakery and false narratives used to disrupt and divert other campaigns such as Hilldborough as follows,

How the Sun’s ‘truth’ about Hillsborough unravelled

https://www.theguardian.com/football/2016/apr/26/how-the-suns-truth-about-hillsborough-unravelled

and

‘The Truth’, Hillsborough, the betrayal of a nation and the catalyst for letting the powerful off the hook

https://www.independent.co.uk/sport/football/hillsborough-the-sun-truth-headline-coronavirus-government-boris-johnson-a9472861.html

I note the following also, “Fabricated stories in the Sun blaming Liverpool fans for the Hillsborough stadium disaster are among examples that will be used in a parliamentary initiative to teach MPs to recognise misinformation and disinformation.”

The Sun’s Hillsborough stories used to teach MPs how to recognise fake news

https://www.theguardian.com/politics/2024/apr/03/sun-hillsborough-stories-teach-mps-recognise-fake-news#:~:text=The%20Sun’s%20Hillsborough%20stories%20used%20to%20teach%20MPs%20how%20to%20recognise%20fake%20news,-This%20article%20is&text=Fabricated%20stories%20in%20the%20Sun,to%20recognise%20misinformation%20and%20disinformation.

This should also be extended to some Contaminated Blood media and Grayson will be discussing this with hovernment and contacting the relevant unit to discuss this as a matter of urgency.

Long standing haemophilia campaigners have suffered a multitude of fake stories on Contaminated Blood paerticularly since 2018 which has now equalled or perhaps surpassed those of Hillborough. However whereas the false Hillsborough stories came mainly from one publication, the Sun, the nature of media and reporting has changed so much that long standing haemophilia campaigners are dealing with multiple media outlets producing disinformation on an almost daily basis.

Then there is the cancelling out of the longest standing campaigners. Grayson was threatened before the Infected Blood Inquiry began that she would be cancelled out of her own awarded research and mainstream media as “punishment” for the years spent campaigning on Palestinian rights and criticising the apartheid atate of Israel. In fact key members of Labour Friends of Israel hijacked the Contaminated Blood campaign some years back attempting to deny Grayson and her campaign colleague Colette Wintle a voice. Grayson notes there are now many calls to proscribe Labour Friends of Israel due to its close links to an apartheid state allegedly carrying out acts of terrorism in Gaza and the West Bank and genocide in Gaza. The disinformation stories and misrepresentation of the true facts and timelines of Contaminated Blood history have been so frequent and profuse, it has been akin to the Israeli propaganda machine Hasbara on speed. Well known Zionist “smearers” promote the newly published books on Contaminated Blood and plagiarists are championed, awarded and funded.

Campaigners have been unable to make official complaints to the Independent Press Standards Organization (IPSO) regarding the rehashed press articles during the Inquiry as they were advised this could tie up their documents possibly for months whilst any investigation took place and they needed to file evidence into the Inquiry as their first priority. Now the work of official complaints must begin and it is yet more work for exhausted infected haemophiliacs and infected/affected partners which causes further retraumatisation.

It is worth noting that US haemophiliacs made Grayson aware of “infiltrators” within their own “bad blood” campaign with certain activists receiving funds from controversial organizations again with a “conflict of interest”. This was determined to be damaging and detrimental to the pursuit of truth and justice and caused distress and psychological harm to genuine campaigners.

It is also observed that certain campaigners have taken up with some very dubious journalists with “too close links” to political parties especially a certain faction of the Labour Party. These campaigners are more focused on promoting their own ego, furthering their career, than helping create honest media content that would strengthen the Contaminated Blood campaign. Do they not understand also that by falsifying dates and timelines they risk any Group Litigation Order that might be initiated being scuppered as High Court judges must work from accurate dates of discovery not those that are imagined.

Such actions from certain elements are abusive and threaten to jeopardize legitimate campaign work and undermines genuine campaigners. This is devastating to those that have devoted their lives in the pursuit of truth and justice. It could be argued that the campaign “fakers” and mischief makers have by their unethical and brutally cruel behaviour, not caring if they throw a campaign or hurt their fellow activists have forfeited their right to compensation. The Cabinet Office should carefully consider this and what action should be taken against such persons as they are now fully aware of the problem and the harm this is causing.

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”.

Ray Barron-Woolford celebrates his award winning film Liberty

(Image via Ray)

The following is a Question and Answer session with Ray Barron- Woolford FRSA based in Deptford, London on his creative works inspired by Kath Duncan, “The Last Queen of Scotland”.

1. Q) Please introduce yourself Ray and tell us a little about your background and activism?

A) I am a lifetime community and social justice – civil rights activist who started life via the Care system and was homeless before becoming successful by establishing the first UK social enterprise to house gay people during the AIDS crisis. To run a business like this at the time was a crime as Gay business like this were unlawful, how crazy was that?

2. Q) You have written a book, play, and documentary film about Kath Duncan, could you please introduce us to her as a political and social activist. When did you first come across her name and what drew you in to find out more?

A) I discovered Kath Duncan whilst seeking ways to the fund my Food Bank in 2014 after several local Deptford Residents told me I was the new Kath Duncan. No other person in UK history was so active at the leadership level on so many social justice and civil rights campaigns, fighting for the rights of Woman and LGBTQ, whilst also opposing fascism, poor housing, lack of money, education and welfare for the poor. What made her so different was she took on the power of the state and went to jail but won almost every battle she fought and lead in a way that was extremely rare for a woman in this period with no money or a wealthy husband. 

3. Q)  I understand your book, “The Last Queen of Scotland” was the first of your 3 main creative works on Kath, what made you choose that title?

A) When Kath Duncan died in 1952, thousands of people came onto Deptford High Street in south- east London to mourn their loss and the crowd, with so much she had won for them, all discussed the many campaigns they had fought alongside Kath. The leader of the public rally asked the crowd,

“How should we, how can we remember a woman, one of us who has achieved so much”? A voice from the crowd declared, “she may have been one of us but she was a Scot.” The newspapers at the time would regularly call her the “Peoples Queen”, therefore I felt “The Last Queen of Scotland” was a great title for my book biography of Kath Duncan. 

4. Q) What were your main aims in writing this book?

A) To raise funds for my food bank which is still the case today and put right the injustice that a “working class hero” as important as Kath Duncan deserved to be a National Treasure. Since my work, Kath now has a Bench in Deptford Park, London, a mural in London and her home town of Kirkcaldy, Scotland. Through my work, she has a voice and statues, that she now has in death, which inspire others as she had in life. 

5. Q) Why do you think Kath was until recently almost lost in history?

A) Working class history heroes, who took on the system and won, rarely have their stories told. I believe if more people knew about these heroes, people would mobilize and organize to do much more to create a better world. By the state NOT telling these stories it keeps the public in their place, being a left Hero also is not something the establishment is comfortable with even today. This is in part why my book could not get a UK publisher. They said the Left doesn’t buy books or watch these films, so I had to publish in the USA although book is widely on sale online and in the UK, whilst my film is yet to screened in Scotland. We should be all asking why Scotland is so uncomfortable screening my film or restoring Kath as a “National Scottish Hero”. 

6. Q) You wrote the screenplay for “Liberty”, a play about Kath, what were the challenges of portraying her life on stage?

A) How do you tell a Story about a great woman who fought so many campaigns? I chose to focus on her role in winning the right to free speech and the right to protest. She was the Malcolm X, the Martin Luther King of her age. So, with Civil Rights still under attack, I felt that how we won these rights and why we need to defend them would be a play without a sell by date and by writing original songs it would reach a much wider audience. My publisher said, my works market was for 35 years plus age group. I discovered that by adding music and dance the play attracted huge numbers of children as well as adults, sitting for over one hour spell bound, without a single one using their phones during the performance.

7. Q) Your book and play were already well received before you began work on the documentary, how do you think they changed the way Kath is viewed and her role in history?

A) It created a platform for historians and societies across the UK to take time to discover this woman that they knew nothing about until my work on Kath. This also led to a Wikipedia page and invites people globally to talk about her life and work and that is still happening today.

8. Q) What obstacles did Kath have to overcome in her lifetime on a personal level?

A) She was 5 feet 2 inches tall, very shy, and very poor. Her mum did sewing to keep her girls from the workhouse as her dad died when Kath was only 5 years of age. She won a scholarship to school and university. As a Scottish suffragette, she became friends with Clementine Hozier who would go on to marry the most important “Man of the Age”, Winston Churchill. This gave Kath Duncan influence and power way beyond her class and statue. 

9. Q) You took on the project of making a documentary about Kath, what do you think this achieved above and beyond the book and play?

A) Liberty, the film, was made to tell history in a totally different way. As so many see history as the past, I wanted to make a film that inspired people by showing how each one of us making a single step can change the world whilst showing how the battles and struggle of the past shape how we live today.

10. Q) Your documentary on Kath has been a great success and now won awards, how many have you received and is there anyone that is particularly special to you?

A) I never expected to win any awards, who would expect a film about an LGBTQ Scottish Feminist Working Class Hero would become the most successful film across all genre in the 2023 Film Festival season winning 50 Global Film awards across 5 continents. My documentary also won Best Political Film of the Year in the US, Best Humanitarian Film in Cairo, Egypt, and Best Script in Spain. Liberty was also the last LGBTQ film to win awards and be screened in Russia and Uganda before their Governments made the promotion of LGBTQ rights a crime. Just sad that a film this powerful about such an important UK hero is not screened in schools or on UK mainstream TV.

11. Q) You chose me to feature in both your play and documentary, I was surprised, touched, and honoured, what made you choose me?

A) I think the world we live in today with so many issues, means that many turn away, thinking they do not have the skills or ability to make a difference. I wanted to show that you and Kath were no different to any other woman angry about social injustice or any other campaign issues. By highlighting this fact, it shows how we take a stand is what makes us different not how we have been born.

12. Q) What do you consider to be Kath’s legacy to the world and her most important achievements?

A) Winning the Rights to Free Speech and the Right to Protest and Winning on the streets without money, power or influence but having a just cause and building a community in solidarity is still very NOW and is something almost every country in the World is in need off as our Civil rights globally continue to be under attack. This is why I think everyone needs to watch this film.

13. Q) Has your work on Kath changed you as a person and if so, how?

A) I never thought as an activist I could make films, Kath showed me i could do whatever I set my mind to.

 14) Q) Finally, thank -you for educating and enlightening us about Kath… do you have any thoughts on what your next project might be?

A) I have Grown to love film making, you can watch some of my films on Vimeo on Demand just search my name. My latest project launches Black History Month, October 2024, on Afeni Shakur and the trial of the Black Panther 21. It tells the true story of Afeni Shakur, who, when pregnant with her son who became the rapper Tupac Shakur, was charged with 156 charges of terrorism in 1969. With no legal training and with the USA President plus the country’s legal system and head of the FBI after her, Afeni fought her own defence. She was found not guilty on every charge in what was at the time, the longest trial in USA history. My film covers this case and focuses on the woman who shaped the Black Panthers whilst covering the extraordinary legacy that the Black Panthers left behind and that has improved the lives of millions of Americans black, brown and white. This is a story of an ordinary “working class woman” taking on the system and winning. She was a woman not unlike Kath Duncan but a story this time that I have written to qualify for Bafta and Oscar listing because these stories need a Global commercial audience. This film should not just become a massive global film hit but should also lead to greater awareness of Kath Duncan and invite others globally to tell stories of their heroes that should and need to be told and shared to inspire everyone to make a stand in these dark times. 

Thanks for this my Friend. People can watch my work by searching my name on Vimeo on Demand, the streaming service.

Thank-you Ray for a fascinating and enlightening interview.

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”.

Lord Horam giving evidence on the Contaminated Blood scandal

(Image via the Infected Blood Inquiry posted on Twitter)

The following is an open letter to Baroness Brinton and Earl Howe from Carol Grayson, the author of this blog, following the Victims and Prisoners Bill debate in the House of Lords 16th February 2024. Grayson lost her husband and brother in law to the Contaminated Blood scandal.

Dear Baroness Brinton and Earl Howe,

Thank-you so much for your important and valuable contributions to the Victims and Prisoners Bill debate yesterday and also your kind mention of Colette (Wintle) and I in terms of the US litigation which my late husband Pete and I initiated around 2002, and our “indomitable spirit”. We have the signed agreement with the pharma companies which should certainly help regarding compensation as we were both officially accepted, with a legal agreement and silence clause.

You might find this interesting on my blog,

Contaminated Blood: US legal depositions from expert witnesses used to help win haemophilia cases released to UK Infected Blood Inquiry

Posted on September 20, 2019 by Carol Anne Grayson

Contaminated Blood: US legal depositions from expert witnesses used to help win haemophilia cases released to UK Infected Blood Inquiry

It was something of a shock to see Lord Horam at the debate and to realize it was 28 years since I wrote to him via my (then) MP Jim Cousins, who also penned his own letters and received Horam’s replies, forwarded to me. Colette and I began campaigning in 1994 on hepatitis C one year BEFORE the Haemophilia Society who kept falsely claiming, hepatitis C was “no big deal”! Finally after a year of relentless pushing for the Society to act, they gave in and began their own campaign in 1995.

I highlighted and included the following issues (see below) to John Horam in 1996 when he was Parliamentary Under Secretary of State for Health. I had previously written to Leonard Levy at the Dept of Health. The correspondence back and forth was submitted to the Infected Blood Inquiry. My letters highlighted,

1. Delays in introducing a hepatitis C test in 1991 when other European countries tested earlier to err on the side of caution.
2. Testing for hepatitis C without “informed consent” of haemophiliacs and withholding positive test results.
3. The “high-risk” sourcing of US plasma with specific references.
4. The failure of doctors to warn haemophilia patients of the dangers of hepatitis C
5. Governments knowledge of the dangers of hepatitis C not shared with haemophiliacs at the time of the HIV litigation when the dangers were played down.
6. Deaths due to hepatitis C in the UK haemophilia population
7. Horrific deaths of haemophiliacs as a result of HIV infection.
8. The inclusion of an hepatitis Undertaking (which I nicknamed the “waiver”) included in the 1991 HIV litigation.
9. Viral inactivation
10. The Macfarlane Trust
11. Panorama documentary called “Bad Blood”
12. The announcement of a compensation scheme in Eire (1996) and my call for what I termed “compensation on a parity with Eire” for haemophiliacs and their families.
13. The Japanese compensation settlement announced in the Times and contribution to compensation from pharma companies.
14. Questioning whether the US pharmas had contributed to any payments in the UK.

Government replies referred to “inadvertent infection” these words were withdrawn as incorrect in 2010 after Colette and I took damning evidence to our meeting with Anne Milton (Health) at Westminster. Government also denied negligence and refused to accept liability (1996).  Pete and I began our legal case to overturn the hepatitis waiver in the HIV litigation so we could litigate for hepatitis C as the waiver signed by haemophiliacs in 1991 prevented this. At that time haemophiliacs did not know their hepatitis C status though the HIV litigation (1991) highlighted that around 99% of haemophiliacs infected with HIV were hepatitis C positive. The only ones who escaped were haemophiliacs with inhibitors that could not tolerate factor concentrates.

My MP Jim Cousins wrote to Horam with reference to haemophiliacs and families, “I would strongly urge the government to reconsider (underlined) the issue of compensation in these cases.“

How different our lives might have been if haemophiliacs and families had been compensated in 1996. Today in 2024, we are still waiting and continue to be delayed by government!

Anyway, I am glad Lord Horam is now supporting the need for urgent compensation. Also the letters are a TRUE record of our history and ironically due to the content show Jason Evans, Factor 8 Group once again rehashed what I said decades ago which is NOT new information or evidence as he keeps FALSELY claiming! It is time government acknowledge my awarded work and APOLOGISE to me publicly and condemn those creating FAKE timelines of discovery of documents and evidence! The Inquiry are not stupid and can see for themselves who knew what and when!

I would also like to highlight the contribution made by Baroness Lynn Featherstone at the debate yesterday. The woman is a disgrace. She contacted me alongside Lynn Kelly (Haemophilia Wales) for evidence from my awarded research on Contaminated Blood as neither woman had the relevant documents to tackle the much needed withdrawal of the 2006 Government Report (the so called “definitive” report) which I critiqued for my dissertation. This featured in an ESRC publication (Summer 2009 Issue 4) covering “research that has influenced society since the moon landing” in 1969.

DHSC0200111 – Self Sufficiency in Blood Products in England and Wales – a Chronology from 1973 to 1991 – 27 Feb 2006

https://www.infectedbloodinquiry.org.uk/evidence/dhsc0200111-self-sufficiency-blood-products-england-and-wales-chronology-1973-1991-27-feb

My emails back and forth with Featherstone and Kelly (with Colette copied in as my witness) show I bent over backwards to assist them. However when it came to their meeting with Sir Christopher Wormald, instead of supporting me to explain and deliver my own research, they excluded me, took my evidence to him minus referencing me. I have kept the relevant emails. The report was then withdrawn and they received the apology not the academic that carried out the research (myself). I am STILL waiting to be properly acknowledged and for an apology from Wormald see letter attached. I note Featherstone named and praised Jason Evans who has rehashed much of my awarded research minus any referencing since he appeared on the campaign scene in 2017. He is now funded by the Terrence Higgins Trust and used by many people to cancel me out and present FALSE timelines of who knew what and when.

To reiterate, before the Inquiry began I was threatened that I would be cancelled out of my own campaign history and mainstream media as “punishment” for my other campaigning on the human rights of Palestinians. This is exactly what has happened apart from my local media, the Journal, Newcastle that have known me for 24 years. I will do all I can to ensure the Zionists responsible for WEAPONIZING “antisemitism” against me and my cancelling out are fully held to account though that will no doubt have to be part of South Africa legal cases due to the continued cover -up here in the UK. It is very dirty politics that must be challenged!

Kind Regards

Carol

Grayson wishes to thank ALL those who took time to research and speak at the Victims and Prisoners Bill debate yesterday. This includes Lord David Owen who has worked tirelessly for decades fighting for the truth to be heard and for justice for Contaminated Blood victims, his ongoing support is greatly appreciated. She would also like to thank Baroness Campbell of Subiton for highlighting the diffuclties experienced by partners of haemophiliacs, (many now bereaved) whose first husband died as a result of receiving contaminated blood products. She also pays tribute to Lord Cormack who died recently. Baroness Brinton stated,

The noble Lord, Lord Cormack, told me he was going to speak, and his death over the weekend leaves a large gap, not just in Parliament but for the victims of the infected blood scandal and their families, whom he supported.

He said in the Commons on 13 November 1989:

“No one can give back to these victims the hope of a normal life that was once theirs. No one can remove the uncertainty with which they and their families live from day to day—the uncertainty of when the bell will toll. If any group of people live in the shadow of death, they do. It is no wonder that their story has been described as the most tragic in the history of the NHS … I hope that we shall have a full and good answer from the Minister, but whatever he says, unless he agrees to our request, the campaign will go on and we shall not go away.”—[Official Report, Commons, 13/11/89; cols. 153-55.]

Patrick, we shall go on. May you rest in peace.

https://www.theyworkforyou.com/lords/?id=2024-02-26a.821.0&s=jonathan+evans+MP

The text of the letter to Sir Christopher Wormald (dated 20th November, 2017) can be read below,

For the urgent attention of Sir Chris Wormald, KCB, Permanent Secretary at the Department of Health  

Contaminated blood, Self Sufficiency report 2006 not to be used, my research vindicated

Dear Sir Chris Wormald,

It has come to my attention from a reliable source that due to serious omissions and inaccuracies in the 2006 report “Self-Sufficiency in blood products in England and Wales: A chronology from 1973 to 1991” you have advised in a letter dated 30th August 2017 that “the department should not refer to this document in any future correspondence or for briefing Ministers”. I have viewed this letter.

I commend your decision to finally act on this and do the right thing as both Labour and Conservatives at the highest level have repeatedly blocked and deceived us with this document which is far from an accurate timelines of events with crucial documents excluded. However the government must now address the serious damage that has been done to haemophiliacs and their families since the release of this report from unnamed authors. It is important to note that this report was published as a DIRECT RESPONSE to a dossier of documents submitted to government by the Newcastle Journal and I in our award winning “Bad Blood” campaign. This can be read in back copies of the publication.

As a victim of the “worst medical treatment disaster in the history of the NHS” (as stated by Lord Winston) I critiqued the Self Sufficiency report for my ESRC Michael Young award winning dissertation in 2006, an award presented to me by Sir Peter Bottomley who coincidently happens to be Chair of the APPG for Haemophilia and Contaminated Blood. I also received the COTT Action = Life award in Washington DC for “upholding truth and justice and services to haemophiliacs, HIV and hepatitis C” in recognition of my work but for years the government would not act on my research findings. As I wrote, even the title is a joke as the UK FAILED to achieve Self-Sufficiency… The report should have begun with the words “failure to achieve self-sufficiency in blood products” to reflect the tragic reality which resulted in the loss of the lives of so many of the UK haemophilia community given contaminated blood. I was able to trace my husband’s imported factor concentrate treatment directly back to infected donors selling their blood in Arkansas State Penitentiary with the help of our US lawyers using the batch numbers.

I assisted the 2 ladies who came to see you on this issue, a campaigner from Wales and a Baroness as they requested of me in writing and by phone but apparently one had decided they could present my research on the inaccuracies better than the actual author and excluded me from the meeting until I protested by which I was too distressed as a widow to deal with them anymore. I lost 2 of my family to this disaster, my husband and brother in law from HIV and hepatitis C and a third victim my father in law who died of a heart attack due to the stress of losing his youngest son and campaigning for justice. This has severely impacted on our daily lives and after their deaths left me severely traumatized and now suffering chronic health problems myself. I wrote my dissertation in the months immediately following the death of my husband.

My research has been REPEATEDLY BLOCKED by the government for years despite presenting this in a face to face meeting with Anne Milton in 2010 in the presence of fellow campaigner and contaminated blood victim Colette Wintle with Rowena Jecock and others present from the Blood Policy department and asking for a response on the content. All I got was thank-you, well done on your award letter WITHOUT government addressing any of the issues which I had been promised.

I am furious at the way I have been treated as both a victim and a researcher and request a full written apology from the government as a matter of urgency.

Under Freedom of Information I request to be informed of every time the Self Sufficiency Report 2006 was referred to both in parliament and by politicians with regard to decision making as the haemophilia community was REPEATEDLY told also in personal letters that this document has been used to affect major decision making under both Labour and Conservative governments. This includes whether to “compensate on a parity with Eire” for the current financial Consultation and the scrapping of the Trusts that supported the haemophilia community. In fact it is referred to in parliament as the so called “definitive report” when my research showed it is not worth the paper it is written on due to the omissions as key evidence. I have read the omitted documents in detail so am fully aware of the content which shows alleged negligence of public bodies and serious safety violations time and time again. Not surprising then that these documents were not included in the DOH report!

All government decisions affecting haemophiliacs from 2006 must now be reviewed as a matter of urgency due to the fact the government were very keen to emphasize their reliance on this sham of a report. This has had serious consequences for our community.

You should be aware that many of the documents now being released via the National Archives at Kew are those I returned in 2006 via solicitor Paul Saxon of Blackett Pratt and Hart, Newcastle upon Tyne which formed part of my late husband’s legal files in the 1991 HIV litigation. These were documents utilized within my dissertation with their return to parliament recorded in letters, in Hansard in 2006 with questions from Lord Jenkin of Rodin who tried to assist us in obtaining the truth from government and in the Guardian and other media. They are copies of documents that government wrote to me had been “inadvertently destroyed by an over zealous civil servant” along with the records of former Health Minister Lord David Owen who put money aside for the UK to become self-sufficient in blood products and continues to back my research in writing. After he left the Health Department he discovered his commitment had not been followed through and he has stated in the Guardian that if there was ever a Public Inquiry the government wouldn’t have a leg to stand on. He has called for haemophiliacs to be compensated which has never happened to this day.

If I had not returned copies to them in 2006, due to the government’s destruction of their own records there would be hardly any blood policy documents to review in the National Archives at Kew and show the history of blood policy in the UK and how haemophiliacs came to be contaminated. Perhaps that was the idea? All of the above was shared with the 2 women who met with you and is recorded and others they referred to me.

I look forward to your response as a matter of urgency and call on the government to do the right thing finally and compensate haemophiliacs and their families on a parity with Eire as recommended by Lord Archer of Sandwell in his report “on loss and need” on the grounds of “extraordinary suffering”. The Archer Inquiry had no remit to include liability and therefore Lord Archer informed me that he could not include certain documents shared with him that showed alleged liability but he did utilize a lot of my research and echo my recommendations.

This DOH report has made the situation far worse for haemophiliacs and more have died since its publication going to their graves denied justice. This has got to stop now.

A 2010 review won in the High Court that relied on documents acquired by Colette Wintle and I also showed that Lord Warner (Labour) had misled parliament and the public for years giving a false narrative on Eire, a false narrative relied upon and continued by the Tory government. I have repeatedly written asking them to change this and apologize. There are so many things that need urgently rectifying its hard to know where to start. For years campaigners were told it was not in the public interest to hold a Public Inquiry, finally Theresa May overturned this nonsense, blood safety is an issue for all. Now we need to ensure a suitable Chairperson and panel is appointed as soon as possible for the Public Inquiry… government should not delay the proper compensation promised by David Cameron any longer, victims have waited long enough!

I would also like to draw your attention to the fact that the longest standing haemophilia campaign groups Haemophilia Action UK, Manor House Group and independent campaigner Colette Wintle (Women Bleed Too) with the most knowledge and evidence were deliberately left out of meetings on the financial Consultation and from that point on boycotted it in protest. Therefore I and others allege that the Consultation is undemocratic, unethical and allegedly illegal as the original solicitors representing haemophiliacs in the 1991 HIV litigation under Justice Ognal were not informed of changes so were unable to ensure their old clients had relevant legal representation and advice on their rights. We were essentially blackmailed, told if we did not sign to go to the new organisation our money would be stopped in November. This is not “informed consent” as I was unable to obtain answers to my questions about the future impact on widows and whether their money would be reduced or stopped at the time of signing.

Incredibly despite my late husband being told he and his family would have substantial security for life by lawyers and echoed in written Parliamentary statements, there is now the threat of our money being reduced or monthly allowances on which widows have relied for years being scrapped. This is totally unacceptable. The original lawyers in the HIV litigation have been informed and are as shocked as I and remain deeply concerned regarding what happened in 1991 and as they put it alleged culpability of government with incriminating documents kept out of court, documents that I only saw years after my husband signed a waiver now alleged to be illegal not to take legal action for a second infection with hepatitis C.

Hence government divided our community and families between HIV and hepatitis C infection when both should have been argued together in 1991. (A top QC alleged the signing of the waiver could not have been “informed consent” due to the fact my husband was not told he had hepatitis C at the time and his positive test result was withheld for years!) This dividing of our community was exceptionally cruel given that there may be several haemophiliacs in the same family on different levels of support or for years no support. This was a terrible mistake but a government mistake so do not even think of punishing widows that had nothing to do with this decision by removing their money next April.

I look forward to your prompt response and thank-you again for withdrawing the use of this report. The media are copied in to this letter along with supporting politicians.

With thanks

Yours sincerely

Carol Grayson

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”.

US hemophiliacs had the “Hemophilia Holocaust” recognised years ago so why are UK govt and Opposition still in denial over UK litigants that are part of this holocaust?

(Some litigants were also infected and affected partners)

(Image Hemophilia Federation of America)

Open letter to Nick Brown MP (Independent) dated 14th January 2024

Dear Nick, (The right to official recognition of UK victims Infected and Affected due to “dumped treatment” that are part of the US “Hemophilia Holocaust” treatment scandal ..US spelling)

In case you are not aware, I was part of the American 2^nd Generation Litigation cases in relation to the use of US factor concentrate products supplied by 4 US pharmaceutical companies. This was treatment deemed not fit for use in the US on the grounds of safety so it was exported around the world. These cases came to be known as the “dumped treatment” cases.

Around 2001, my late husband Pete and I worked very hard to set up contact with a US legal firm called Lieff, Cabraser, Heimann and Bernstein in San Francisco who accepted Pete’s case. We asked if others could join the litigation and the firm agreed to take on around another 300 cases of UK haemophiliacs, infected and bereaved partners that had received US treatment including my campaign colleague Colette Wintle. After extensive scrutiny of medical records and factor concentrate treatment batch numbers by our lawyers and the pharma company lawyers, those who had the RELEVANT EVIDENCE were officially accepted by these 4 companies and an agreement was reached around 2009. In the case of some litigants such as Pete, the plasma collected and pooled to manufacture factor concentrates was traced back to individual infected and named US prison donors with HIV/HCV. It only took one infected donor to infect a plasma pool. UK haemophiliacs went from receiving UK cryoprecipitate made from single or handful of well screened volunteer donors to plasma pools containing donations from as high as 400,000 paid donors. The donors were often classed as “high-risk” donors such as prisoners, prostitutes, homosexuals, drug users and donors living on “skid-row”. See reference to the case here,

Blood Factor Contamination Cases

Although we were LEGALLY ACCEPTED, the case was termed to be “forum non conveniens” (not the right venue) by a US judge when UK haemophiliacs attended the US court. The “first line of duty of care” for UK haemophiliacs was deemed to rest with the UK government who must now pay compensation to victims. We can’t go into detail other than what is publicly known due to a silence clause. The judge ruled no further UK cases could go to the US courts and the cases were officially closed some years ago with an agreement with the pharmas.

The infection of haemophiliacs with US products was not called the contaminated or infected blood scandal in the US but the “Hemophilia Holocaust” by lawyers and litigants. The dumped treatment cases are part of that which is a far more appropriate name reflecting the severity of what was PROVEN to be done to haemophiliacs in this litigation and one that most of the public can easily understand in an instant. The term “holocaust” is defined as “destruction or slaughter on a mass scale”. Colette and I stress the importance of our US cases being referred to under the correct term “Hemophilia Holocaust. We are talking about a finite group of around 300 UK cases that took part in the US litigation. In 2018, UK journalist Ian Birrell wrote,

In the United States they call it ‘the haemophilia holocaust’ after use of tainted blood products wiped out thousands of people with the blood disorder.

It is important to note that key safety measures were ignored in the US and the treatment was introduced BEFORE working on a way to virally inactivate. It was done the wrong way round, profit before safety!  Working on viral inactivation for hepatitis as warned by experts in the 1960s should have come FIRST for safety reasons even if it meant delaying the introduction of factor concentrates by years such was the KNOWN dangers of using pooled plasma for this treatment.

Just to point out that the term “Hemophilia Holocaust” refers to all those who received US products as American haemophiliacs and that is extended to those abroad given the SAME US products! Since the Infected Blood Inquiry began I have instructed my lawyers to obtain the US legal depositions which have been submitted to the Inquiry and were used in US haemophilia cases and our US dumped treatment cases.

Using appropriate terminology is particularly important to victims when it comes to truth, justice and compensation. I fully accept the atrocious Holocaust of the 2^nd World War, I was brought up reading holocaust literature (thanks to my mother) and have visited Auschwitz and other memorial sites across Europe but there are other holocausts that must ALSO be remembered before and after the Holocaust of the 2^nd World War. I have discussed this in previous articles. You can’t cherry pick which holocausts you accept or deny, a holocaust is a holocaust and when it comes to the percentage of any population harmed and killed, our holocaust is very high! I went to Auschwitz to remember all those who were harmed and died in the most horrific ways. I also wanted to learn about the shocking experiments of Dr Mengele as I had come across disturbing experiments on our own haemophiliacs without informed consent and against the Nuremberg Code and wanted to examine the trials in that context.

When we met Anne Milton in 2010, we took evidence asking her to remove the words “inadvertent infection” which she did. This terminology was WRONGLY used by successive governments for decades as their form of “damage limitation” however I obtained copies of incriminating evidence including minutes showing government officials were present at meetings when experimentation on haemophiliacs was discussed. Just to say also not all evidence from the Infected Blood Inquiry is in the public domain, some is only accessible through a website called Relativity which we as “core participants” can view and is password protected.

I attach 2 photos of Committee of Ten Thousand COTT demonstrations highlighting the Hemophilia Holocaust.  I attach also a photo of an award I accepted, the “Action Equals Life” human rights award from COTT in 2009 on behalf of Pete and I on Capitol Hill Washington DC alongside the esteemed Dr Don Francis (former CDC, Centre for Disease Control) and the greatly respected Dr Jay Epstein (Former FDA, Food and Drug Administration).

Our Hemophilia Holocaust has long been denied here, no government officials ever refer to the dumped treatment cases or the Hemophilia Holocaust, it is most disturbing, as if it never happened!

Although there is no specific law in this country that directly refers to “holocaust denial”, cases of denial have been prosecuted under the Malicious Communications Act 1988 and the Communications Act 2023.

In conclusion, I ask you to,

1. Please approach government to ensure that there is official government recognition and public acceptance of UK victims Infected and Affected of the US Hemophilia Holocaust (using this terminology) that had dumped treatment litigation cases legally accepted by the 4 US pharmaceutical companies.
2. Please work with government to ensure that those UK victims Infected and Affected harmed during the Hemophilia Holocaust are included in the UK Holocaust Memorial Bill
3. Please work with government to ensure that UK victims Infected and Affected are included in Holocaust Memorial Day events.

With thanks for your help.

Kind Regards

Carol Grayson

Address and Telephone number supplied

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”.

Al-Rantisi hospital under attack from Israel, photo shows the burning car park

(Quds News Network)

On the 9th November 2023, Israel attacked Al Rantisi, the children’s hospital in Gaza where haemophiliacs are treated. They may now be unable to even reach a hospital due to aerial bombardment and even if they do, there is no guarantee of acessing treatment or safety. The staff are calling out for the international community to protect them! A video posted on Twitter shows flames reaching the hospital building and a car burning fiercely. Quds News reported, “the spokesman of the Health Ministry said the Al Rantisi pediatric hospital was among the ones attacked and that large fires broke out in the basement and other areas of the hospital.“

Back in August 2023, before the current conflict between Israel and Hamas, a photo from Steve Sosebee, Palestine Children’s Relief Fund shows haemophiliacs and staff enjoying a recreational day at Al Rantisi hospital. Haemophilia is a hereditary condition where the blood does not clot properly. Treatment called factor concentrates are required to replace the missing clotting factor and bleeding can be very painful especially in joints such as knees, ankles and elbows and muscles which over the years can lead to arthropathy and restricted movement.

In 2013, Al Qassam, Occupied Palestine website reported,

Jad Taweel, chairman of the board of directors for Palestinian Society for Bleeding Disorders (PSBD) said there are 450 haemophilia patients in Palestine facing severe problems in treatment.”

Taweel pointed in press statement on Saturday to the patients’ inability to afford the high costs of treatment, the high incidence of the condition in the Palestinian territories and the lack of treatment in Palestinian hospitals.

He explained that in case of ordinary bleeding, a patient with haemophilia needs 25 therapeutic units at a cost of up to $2,500 per month.

He added: “Unfortunately, coagulation factors are not available on a regular basis for the treatment of haemophilia patients. There are no specialized care services for these patients, according to international protocols, and this increases the suffering of the patients.”

450 haemophilia patients in Palestine face problems in treatment

Although the situation has improved with help from international donors, this does not cover all haemophiliacs and shortages remain. During periods of conflict, supplies are interrupted and hospitals are under threat from bombing and their ability to function and provide the usul services are severely hampered. The following link gives an account of treatment for haemophiliacs when operating normally,

https://www.alquds.com/en/posts/66804?language=he

Hala Borno describes the difficulties for haemophiliacs living in a conflict zone on the following link,

Blood and conflict: managing bleeding disorders in Gaza

WHO EMRO | Blood and conflict: managing bleeding disorders in Gaza | Volume 23, issue 11 | EMHJ volume 23, 2017

The Al Rantisi hospital provides some specialist care to haemophiliacs. This is now collapsing, the following was tweeted from a doctor in Gaza. (Name withheld as doctors and their families are increasing being targeted and coming under attack.)

Al-Rantisi Hospital, the only children’s hospital in the Gaza Strip that deals with chronic diseases for children, children with heart disease, lung fibrosis, cerebral palsy, blood diseases, cirrhosis of the liver, childhood cancer, people with Down syndrome, and many others. Unfortunately, Al- Rantisi is now burning from the bombing.

It is the only children’s hospital that contains a paediatric gastrointestinal endoscope, a paediatric pulmonoscope, an echo device for imaging children’s hearts, a special blood analysis laboratory for children, and other advanced services, which are only found in Al-Rantisi Hospital, and cases from all of the Gaza Strip are referred to it. It’s all burning now…

The main blood bank in Gaza was also targeted, reportedly putting it out of service!

On International Day for Haemophilia, 17th April 2023, al Quds website reported that,

the Palestinian Ministry of Health stated that the number of hemophilia patients in Palestine reached 562, including 178 patients in the Gaza Strip , and 384 patients in the West Bank.

The theme was,

“Access to Treatment for All – Prevention of Bleeding as a Global Standard of Care”, highlighting patients’ suffering and needs and raising the level of community awareness about hemophilia.

AVAAZ describes Gaza as a “walled kindergarten” that is “being bombed to dust” with children making up 42% of Gaza’s population. Kaitlin Hansen from the organization stated,

When the Israeli government ordered a total siege, this is a siege on kids.

It’s boys and girls who are running from the rockets, hiding anywhere to escape the deadly plumes of phosphorus that would burn them to the bone. There are no bomb shelters in Gaza. Food and water have been cut off, and over a million people have been told to flee.

However, when haemophilac children are experiencing a bleed, they may not be able to run away like other children. If they are mobile at all with an agonising untreated bleed into a joint (as treatment may now be unavailable) they will be limping slowly, possibly on crutches or may be immobile having to rely on someone pushing them in a wheelchair or carrying them to find shelter. Even then, as highlighted, Gaza does not have bunkers in which to escape bombardment like Israel.

I raised the issue of apartheid medical treatment of Palestinian haemophiliacs some time ago with Dame Diana Johnson MP who was given her damehood on the back of her campaigning in the UK regarding haemophiliacs infected with HIV and hepatitis C in the 1970s and 80s. At that time plasma used to make factor concentrates was often imported from the US and sourced from high -risk donors such as homosexuals, prisoners, prostitutes, drug users and “skid-row donors”. (My husband Peter and brother in law Stephen died as a result of the Contaminated Blood scandal and my father in law died of a heart attack campaigning for justice, unable to cope with the stress of losing his youngest son.) As Johnson is vice -Chair of Labour Friends of Israel, I asked her why she did not speak up for those experiencing apartheid medical treatment as highlighted in numerous articles on Palestinian haemophiliacs. I was then falsely accused of “antisemitic conspiracy theories” and banned from the email list of the All Party Parliamentary Group, APPG for Haemophilia and Contaminated Blood.

On the 1st November 2023, Human Rights Watch published the following report on the situation for persons with disabilities in a conflict zone (see following link) since then the situation in Gaza has deteriorated dramatically.

Gaza: Israeli Attacks, Blockade Devastating for People with Disabilities

Greater Risks During Strikes, Difficulty Obtaining Necessities, Shelter

https://www.hrw.org/news/2023/11/01/gaza-israeli-attacks-blockade-devastating-people-disabilities

Today, the situation for haemophiliacs in Gaza is dire. The following message was posted on Twitter by a Palestinian doctor on 10th November 2023,

Israel told people inside al-Rantisi children’s hospital to evacuate. They came out waving white flags and then the Israeli military shot at them.

Message from Gaza

Urgent : Tanks are besieging the AL Rantisi Children’s Hospital, trapping medical staff and patients inside. Direct sniping at anyone moving in the area. This is extremely serious

On a video, I could clearly see the children from the hospital waving white flags as they attempted to evacuate, shots could be heard and the youngsters and accompanying staff ran terrified back into the hospital. The woman who shot the video is praying out loud. I don’t know if the evacuation will continue or not. If not, the patients and staff are at risk of being bombed yet again.

The World Federation of Hemophilia had previously released a statement on the 14th October saying it was closely monitoring the situation,

Once we have established that providing help can be done in safety and in an effective manner, the WFH will act quickly. We will work with our national member organizations, with healthcare practitioners, and with other stakeholders from both communities to get help to where it is needed the most. The WFH Humanitarian Aid team is standing by to deliver products as soon as distribution channels open.

https://wfh.org/article/wfh-statement-on-the-israel-palestine-crisis/

It must now be abundanly clear that the situation in Gaza is desperate and without a full ceasefire it will be difficult if not impossible to deliver products. Only limited aid is getting into Gaza and remains at threat of attack with hospitals barely able to function.

Last night other hospitals were attacked and several civilians living in tents in hospital grounds were killed, one man can be seen screaming in a pool of blood with his leg blown off.

Gaza is now in total collapse, there is carpet bombing, hardly any food or water, bakeries bombed, no shelter as many homes are destroyed, the infrastructure is being obliterated. Thousands gather and are now living in hospital corridors as their homes no longer exist but as we have seen, not even a hospital is safe.

There is no fuel either. Dr Mads Gilbert (well known for his past work at Al Shifa hospital during past conflicts) reported that Al -Shifa’s one generator left operating is now running on cooking oil. Medical supplies have run out. There is no oxygen and other treatment facilities without fuel and electricity to keep things going. Children are in agony with 3^rd degree burns from the bombings, they have maggots crawling out of facial wounds, women are having caesareans without pain relief, amputations are carried out without anaesthetic. There are flies all over the hospital as with so many people and lack of water its impossible to keep good hygiene and sterility, operations are carried out on the floor as there are no beds left. Disease is breaking out, patients die thirsty. The families of doctors and journalists speaking out on the horrendous conditions are being targeted and their families killed, ambulances and first line responders are also being bombed. There is no heavy equipment to rescue those buried under the rubble of collapsed buildings.

The doctors and all hospital staff from surgeons to caretakers and first line responders continuing to provide what help they can in horrendous conditions are absolute heroes and I thank them for their humanity and outstanding service to their patients. When he could not use his car through lack of fuel, one doctor bought a bike to cycle to those in need and carried it over his head when chambering through the mountains of debris from bombed buildings to reach those who needed medication at home.

Gaza is experiencing collective punishment, war crimes, ethnic cleansing and genocide!

The situation for haemophiliacs is dire. They are in the midst of a conflict zone once again, they may have lost family members, their home, be suffering from injuries (if not already killed) and will now have very limited treatment or no treatment at all. MSF highted that many patients lost their medication under the rubble of homes targeted by Israel. An injury for a haemophiliac in this situation could be catastrophic without treatment as the bleeding won’t stop. Hospital services are increasingly bombed and it is not even safe to evacuate Al-Rantisi hospital.

Middle -East Eye reports,

Israeli army kills 260 Palestinians in 24 hours, death toll tops 11,000

‘If there is a hell on earth today, it’s name is northern Gaza’, says UN official

The last report from Medicins Sans Frontieres (Doctors Without Borders) stated,

The situation in Gaza continues to deteriorate. Updates from our staff at Al-Shifa hospital

Dr Mohammad Abu Mughaiseb, Deputy Medical Coordinator, shared that “since this morning, many MSF medical staff have stopped working in supported hospitals in #Gaza city because…

“Medical staff were terrified, trying to save their lives and their families. Some of them remain inside the facility, while others are leaving to the South of #Gaza along with displaced people“

Al-Shifa hospital is the main operational health facility in #Gaza city providing emergency and surgical care, with hundreds of patients and civilians inside.

We repeat: Attacks on medical facilities, ambulances, staff and patients MUST STOP!

I am extremely distressed at what I seeing and hearing. The attacks from Israel on hospitals are obscene, horrendous, inhumane and against all international law. The suffering is extreme and there is no time to lose.

“Since the 7th of October,

The World Health Organisation has verified over 250 attacks on health care in Gaza and the West Bank. Last week, WHO documented 5 attacks on 5 hospitals in one day in Gaza.”

In an update on Saturday 11th September, Al Jazeera reported an update on Al Shifa as follows:

‘This is the moment we have been warning the whole world of’

Al Jazeera has spoken to Gaza Deputy Health Minister Dr. Youssef Abu Alreesh, currently inside al-Shifa Hospital as it is takes heavy fire from Israeli forces.

Here are his translated comments:

• This is the moment we have been warning the whole world of, all generators are off, all power sources are out.
• We have 39 newborns in the incubators, those babies are fighting against death.
• No one is able to move around the compound, snipers are stationed all over the place in addition to the drones that target and kill any moving person.
• A few minutes ago one of the engineering team was hit by a sniper, he was hit in the neck and was paralysed and he’s now about to die.
• Part of the hospital was shelled and part of the building caught fire, we fear it will engulf the whole compound.
• A few families tried to leave but they were targeted; now they are lying dead outside the hospital. We cannot get to them.
• We are totally stranded, we are cut off from the outside world, and above all, we are left without any medical resources. We cannot even bury the dead.
• Ferocious gunfire can be heard within the vicinity of the hospital, the intensive care unit received a mortar shell a few minutes ago.
• Blood is everywhere, on the floor, we cannot even clean it.
• In the past, the Israeli killing machine was killing and this was conveyed on TV screens. Now they are perpetrating the same killing but no one is listening, no one is watching, the whole world is standing by.
• We are speaking with whatever is left of my phone battery, after that, we will be silent.

https://www.aljazeera.com/news/liveblog/2023/11/11/israel-hamas-war-live-pleas-for-help-as-israel-bombards-gaza-hospitals

Medecine Sans Frontieres issued the following update on the 11th November 2023,

Gaza: Patients and medical staff trapped in hospitals under fire

Gaza: Patients and medical staff trapped in hospitals under fire

I call on the UK Haemophilia Society to join the many NGOs, human rights groups, doctors, lawyers, journalists and make a public statement calling for a FULL CEASEFIRE NOW to protect the hospitals, staff and patients! I personally have called for a ceasefire since just after the first attacks on civilians. To remain silent is to be complicit with the genocidal actions of an apartheid state. Gazan doctors are calling out for our help and support so they in turn can continue assisting their patients. They are heroes chosing to stay and care for the sick and dying in the most horrendous conditions imagineable and we cannot let them down!

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”.

Peter Longstaff hold up his treatment cards showing what was recorded each time a haemophiliac took factor 8 treatment.

(Image, Grayson Archives)

The infection of Dame Anita Roddick with hepatitis C (who founded the Body Shop championing ethical standards in beauty products) has for many years been reported as a “transfusion” case during childbirth as opposed to infection via treatment with manufactured blood products such as factor concentrates. In the Sussex Express, a tribute from Prime Minister, Gordon Brown referred to Roddick, who died in 2007 of a brain haemorrhage and had cirrhosis of the liver, as “one of this country’s ‘true pioneers'”. He stated, “she campaigned for green issues for many years before it became fashionable to do so and inspired millions to the cause by bringing sustainable products to a mass market.”

Looking into the background of Roddick’s infection, back on the 15th February 2007, the Guardian reported,

Dame Anita Roddick, the founder of the Body Shop, revealed yesterday that she is carrying hepatitis C and has cirrhosis of the liver, one of the condition’s long-term effects. The 64-year-old entrepreneur said she had contracted hepatitis C through a blood transfusion while giving birth to her youngest daughter, Sam, in 1971.

So it was with some surprise that the author of this blog Carol Grayson heard a recent podcast with Caroline Wheeler author of the newly released book, Death in the Blood: The inside story of the NHS infected blood scandal, where it was suddenly alleged Roddick’s infection came from factor 8 concentrates.

The podcast can be heard here,

https://podfollow.com/1649210131/episode/90c07b9e7c62feed8af03d429feaf788bf739479/view

The Evening Standard reported,

Dame Anita contracted the disease from a transfusion of contaminated blood, 20 years before a national blood screening programme for the virus was introduced in 1991.

The article highlights Roddick saying,

“I am not angry, there was no blood screening programme for hepatitis C until 1991, but what bugs me is the Government’s conspicuous absence on this subject, they are not doing anything about it,”

This comment in itself is significant as it indicates Roddick was referring to a whole blood transfusion rather than blood products. She is referring to the date when blood was first tested for hepatitis C to avoid transmission of the virus via whole blood. With regard to those infected through factor concentrate treatment such as haemophiliacs with an inherited blood clotting disorder, they refer to the date when blood products were first heat treated to kill off hepatitis C and HIV and this was 1984. (The date is later in Scotland due to methods used which were not as effective.) Government and medical journal sources and numerous books have confirmed whole blood was never imported. It would have been too impractical to do so and had a much shorter shelf life than concentrates however factor concentrate treatment was imported from the US in large quantities with the first product licences granted in 1973.

The date given regarding Roddick’s infection is 1971. There are instances of haemophiliacs being given imported factor concentrates in 1972 including Grayson’s husband Peter Longstaff but this was usually on a “named patient basis” on application and for those on treatment trials. Longstaff attended a special school for children with disabilities named Lord Mayor Treloar College. He was on treatment trials in the early 1970s as his official records show and the college has a treatment centre at the school. Longstaff was infected with HIV, hepatitis B and C and exposed to variant CJD all through his treatment with factor 8 products. Roddick never mentioned having any clotting disorder. It is likely she was treated either at an Accident and Emergency Unit or a maternity hospital or unit. As she was treated for bleeding in relation to childbirth it is highly unlikely there would be time for a named patient basis application.

With regard to treatment with UK factor concentrates, the now disgraced, Department of Health Self Sufficiency Report 2006, deemed a “whitewash” and withdrawn on the evidence of this author, does mention some very early NHS factor concentrates being produced, “in the UK, NHS factor VIII concentrate was being produced as early as 1969, and its production rose steadily, almost doubling between 1976 and 1977” however haemophiliacs that were the biggest users of this treatment mostly remained on cryoprecipitate until 1973 and importation began, unless they were part of UK treatment trials on a named patient basis. The other treatments at that time were Fresh Frozen Plasma (FFP) or Cryoprecipitate from the UK. The 1971 treatment is the only treatment date referred to by Roddick herself when she discusses her infection.

This 1971 date is echoed by her daughter in an interview with BBC Newsnight where again she refers to a blood “transfusion”.

For the last few years, the mixing together of two entirely separate cases haemopohlia and whole blood in the media, and the Infected Blood Inquiry set up in 2018 to investigate how patients were infected have caused much confusion in people. The two groups campaigned separately for years as the Haemophilia Society doesn’t have a legal remit beyond inherited bleeding disorders and the Hepatitis C Trust covers whole blood cases. The circumstances and evidence around haemophilia and whole blood are very different. In some cases more recently the two have campaigned together but the joining together has increased the confusion and in some cases caused great damage due to the mix up of cases where for example people infected through whole blood transfusions have wrongly stated they had received US blood. This is highly distressing for haemophiliacs that actually did have factor concentrates and launched cases in the US in the early 2000s.

In 2017, I read interviews with Roddick’s daughter who appeared to be confusing the two. I did leave messages via the publications publishing her story to try to explain the differences. In one 2017 BBC Newsnight interview she can be heard discussing a blood transfusion responsible for her mother’s infection (not factor concentrate treatment) then when asked who is to blame naming the pharmaceutical companies. If Roddick had a whole blood transfusion, the blame would lay with authorities in the UK such as the National Blood Transfusion Service not pharma companies.

BBC Newsnight interview 31st July 2017

https://www.google.com/search?q=anita+roddick++hepatitis+c&sca_esv=567570395&rlz=1C1CHBF_en-GBGB947GB947&biw=1536&bih=715&tbm=vid&ei=vnYNZY-8FsabhbIP87OIyAo&ved=0ahUKEwiPk4mJi76BAxXGTUEAHfMZAqk4ChDh1QMIDQ&uact=5&oq=anita+roddick++hepatitis+c&gs_lp=Eg1nd3Mtd2l6LXZpZGVvIhphbml0YSByb2RkaWNrICBoZXBhdGl0aXMgYzIFEAAYogQyCBAAGIkFGKIEMgUQABiiBEjIJ1CnCFjvEnAAeACQAQCYAYIBoAGjBqoBAzcuM7gBA8gBAPgBAcICBBAhGAqIBgE&sclient=gws-wiz-video#fpstate=ive&vld=cid:568bf0e9,vid:0ADzQp-7ubo,st:0

If Roddick had factor concentrates that should be recorded in her medical or treatment records, this was necessary in case urgent product recalls needed to be carried out. There are a number of other potential risks related to manufactured treatment such as bacterial contaminant getting into a bottle which occasionally occurred. For haemophiliacs this recording was done on a green card system and included the following,

1. Name and Date of Birth of patient
2. Date and Time treatment is given
3. Name of product such as Hemofil
4. Name of company such as Baxter/Hyland
5. Batch Number plus HT if heat treated
6. Expiry Date of Treatment
7. Site and type of bleed such knee bleed into joint
8. Amount of factor concentrate given
9. Signed by person giving treatment
10. This was in case of an adverse clinical reaction, development of inhibitors, recall by the company

These batch number treatment details appear to have sometimes been kept separate to the medical records. If Roddick has been infected with factor 8 products presumably Wheeler, as an investigative journalist and author will have asked to see records of batch numbers to verify this or medical notes within Roddick’s records that specificly state the use of factor concentrates, what dosage, how many units etc. Concentrates come in small glass bottles containing a white powder (freeze died concentrates) and are mixed with sterile water for injection into a vein. Grayson has been through this process herself when asked to verify her husband’s treatment for journalists covering his story of infection.

Also it is important to state that the notes of a person with a lifelong medical condition such as a blood clotting disorder are usually kept for several years after death. Grayson has included a photo of her late husband displaying a photocopy of one of these treatment cards needed for litigation in the US so his treatment could be traced back to source (such as a US prison). Longstaff’s lawyers confirmed to the couple and the BBC that he had received factor concentrate products where a named HIV infected donor had sold his blood at Arkansas State Penitentiary. Longstaff received the treatment AFTER the prison plasma centre was closed down on the grounds of safety. This treatment was part of the “dumped” treatment second generation litigation. The pharmas accepted Longstaff’s case and others and an agreement was reached with a silence clause some years ago with the bulk of the responsibility put firmly at the feet of the UK government as having first line “duty of care” regarding treatment safety.

Stuart Mclean who became infected with hepatitis C after being wrongly misdiagnosed as a haemophiliac and treated with factor concentrates also wants to understand why it is suddenly being claimed Roddick had factor 8 when there has been no reference to this before. He also pointed to a 2017 video interview with Roddick’s daughter highlighting her mother’s infection via a blood transfusion. McLean noted a publication stating that Roddick’s youngest daughter Sam was born in Rustington in the UK, so she had been in the UK when giving birth (as opposed to being treated abroad.)

Sam Roddick was born on July 1, 1971 in Rustington, Sussex, England, UK

https://www.imdb.com/name/nm3045956/bio/

Mclean had requested confirmation of batch numbers via his wife, pointing out dates of when factor concentrates were first used in the UK which challenged the Wheeler podcast narrative and the statement claiming factor 8 was used. At that point Wheeler made it clear she wished to end the contact without providing any evidence.

Roddick dedicated her time to the Hepatitis C Trust, where she was a Patron and was an inspiration to others that were infected with hepatitis C through blood transfusion whilst pregnant and is mentioned in several statements to the Infected Blood Inquiry.

Roddick struck Grayson as a woman to whom truth and justice was very important on so many issues and felt a strong connection to many of her causes. Grayson was a regular customer at the Bodyshop and still misses the Woody Sandalwood oil which reminded her so much of trips to India. She feels for her daughter Sam and understands the importance of having the correct information and evidence with regard to the death of a loved one. Grayson lost her husband and brother in law and Roddick’s daughter lost her mum. The truth and establishing the correct evidence regarding how Roddick came to be infected with hepatitis C must surely be the goal of the family.

Grayson has questioned Wheeler before by email over her reporting, in one case where Grayson’s old evidence was being presented as “new” .When she made challenges to several publications, in a consortium, the word “new” was removed as incorrect. Evidence that had been published before well known to this author was clearly being rehashed. Grayson and her campaign colleague Colette Wintle were also concerned over recent Sunday feature articles on Contaminated Blood that were confusing and poorly written, An opinion shared by others reading the articles including one lawyer..

Anyone writing a book, article, dissertation must be prepared to be challenged, questioned and defend their work. It is part of the process of learning. Therefore as the Roddick case is in the public domain Grayson challenges Wheeler to provide evidence of her claims that Roddick had factor 8 concentrates. This doesn’t have to be put into the press but can be sent to Grayson privately or her lawyer Milners. Otherwise in the absence of evidence with the only information provided stating Roddick had a blood transfusion then that is all people can state regarding her case.

If Grayson is incorrect and batch numbers of factor 8 are provided as in the case of her own husband, she will hold up her hands and accept this. For Grayson this would mean Roddick’s case is considered with the correct evidence, she herself will have learnt something new and it would also show she was right about her concerns over reporting on contaminated blood in the media which in some cases has been abysmal with regard to the level of accuracy. So Caroline Wheeler are you prepared to accept this challenge and answer the questions of a widow who is part of the Contaminated Blood community and has never waivered from the path of seeking truth and justice…. over to you?

As Grayson writes this, she gets sight of Wheelers new book, Death in the Blood and there on page 25 it highlights, “the origin of the blood Roddick received is unknown”. Wheeler needs to do some explaining on how she came to the conclusion after so many years that Roddick had factor 8 and not a whole blood transfusion or is this another of Wheeler’s stories not properly researched?

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”.

Sir Brian Langstaff, Chair of the Infected Blood Inquiry who will deliver an Autumn Report

(Image via the Chronicle)

Long standing haemophilia campaigners Carol Grayson and Colette Wintle refuse to be side tracked by new books about to be published on the Contaminated Blood scandal. They believe attempts are being made to distract and undermine Sir Brian Langstaff’s forthcoming report to be released in 2024 from the Infected Blood Inquiry which began in 2018. Grayson, founder of Haemophilia Action UK, author of this blog stated, “we call it the Spring Report as opposed to the ‘final’ report as the Chair’s work is not fully complete until Sir Brian can report that his recommendations are actually carried out in full, that is the time to use the word “final”. This is reflected in our lawyers Milners and Sam Stein KC, SUBMISSIONS ON BEHALF OF THE CORE PARTICIPANTS REPRESENTED BY MILNERS SOLICITORS – AUGUST 2023

The campaigning duo are aware of two books about to be released on Contaminated Blood but highlight that their focus is on supporting Sir Brian as he has had full access to a huge array of documents and evidence, much of which was made available to Core Participants of the Inquiry on a website storage facility named Relativity. However, although substantial evidence has being released into the public domain from the Inquiry, lawyers have confirmed Relativity is not available to corporate media journalists which makes it nigh on impossible for them to call their books “definitive” accounts of the scandal and undermines the work of the Inquiry. Grayson and Wintle also note that these journalists are so disengaged from the victims that they write about within their publications that they haven’t even sent a courtesy copy of their books to the national Haemophilia Society to review or to long standing campaign groups.

Therefore, rather than be distracted by books from corporate media journalists that rehash old stories and have already displayed innaccuracies, ignorance and bias, Grayson and Wintle will also continue to focus on and support their lawyers August 2023 submission. Milners solicitors have provided an important and useful reference to the Bichard Inquiry child protection procedures following the murder of Jessica Chapman and Holly Wells which will hopefully be applied to the Infected Blood Inquiry.

The earlier Bichard report recognized the need for ONGOING monitoring PAST the release date on an Inquiry report. This can be applied to the Infected Blood Inquiry to ensure government is fully committed to acting SWIFTLY and EFFECTIVELY on the implementation of ALL the recommendations so carefully considered by Sir Brian Langstaff. The Chair has spent much time preparing what he believes is best for those at the heart of the Inquiry, haemophiliacs infected with HIV and hepatitis viruses after receiving factor concentrate blood products to treat their clotting disorder, their infected and affected partners and other family members. Much of the treatment used on haemophiliacs was imported from the US from “high risk” sources such as prisoners, sex workers, gay men, drug addicts and “skid-row donors”. Many haemophiliacs have since died and are still dying, one every 4 days. Milners are intent on working for the best possible outcome for their clients and recognize how aspects of the Bichard Inquiry would be valuable for the Infected Blood Inquiry. They state the following in their submission,

13. On 14 June 2004, the Bichard Inquiry reported to the Home Secretary. The published
    report contained, in its opening pages, a letter from Sir Michael Bichard to the Home
    Secretary submitting his report. In that letter he said: which, for ease of reference, is
    cited in full below:
    “…I am pleased to submit my report to you.
    I am grateful for the assurance you have given me that the report will be quickly
    published.
    I look forward to the Government’s response to my findings and to the
    recommendations which I make. As you know, I aim to reconvene my inquiry in six
    months’ time to assess progress on those recommendations which the Government
    chooses to accept. I am confident, as I acknowledge in my report, of the spirit in which
    my recommendations will be received and taken forward.”
14. Sir Michael was sent a progress report by the Government on 22 December 2004 and
    then provided an update report on 15 March 2005, in which he noted “…the progress
    made to date owes a great deal to the effectiveness of the programme management
    arrangements that were put in place, and I believe that it is essential that these are
    maintained for at least the next 12 months. I am also clear that the fact that this public
    review was known to be taking place has concentrated minds…”

Grayson and Wintle back their lawyers in calling for a similar progress report from government once Sir Brian has released his Spring Report. They feels its important and vital that he then follows up with an update related to the implementation of his Recommendations and that similar arrangements to Bichard can continue for at least 12 months following his report as an ongoing monitoring provision.

Grayson and Wintle reflect on their dismay at how the recommendations of a previous inquiry were blocked by government where there was no official ongoing monitoring past the release date. They spoke jointly stating the following,

We both gave evidence at the earlier Archer Inquiry in 2007 and witnessed 2 years later how the minds of government officials were certainly not concentrated on supporting victims. Government ignored the key recommendations of Lord Archer in his report. Ministers blatently told lies to ensure “compensation on a parity with Eire” was not paid to haemophilia victims by claiming the Eire case was different as the government there had accepted legal liability. This was completely untrue. Haemophiliacs in Eire were paid out on the grounds of “extraordinary suffering” WITHOUT government accepting legal liability and without going to court. Despite us both submitting key evidence to support a Judicial Review into how government came to this wrongful decision (which was WON), the Archer Inquiry by then was over, the Chair had officially stepped down and there was no further official monitoring. Haemophiliacs and their families were once again failed by the state. We recognize the importance of the Bichard Report in continuing to monitor after the Spring Report is presented to ensure the state does not try to wriggle out of its responsibilities yet again and abides by Sir Brian’s full recommendations.

Grayson and Wintle say they have little time to focus on the new books on the Contaminated Blood scandal but may carry out textual analysis at a later date in case of inaccuracies or defamation. They claim the authors have shown no genuine interest in working with the longest standing campaigners and appear somewhat intimidated by strong women that can’t be manipulated or dominated to suit the agenda of the authors rather than an accurate history and narrative of a scandal.

They pair said,

We have seen “taster articles” in Sunday newspapers in advance of the publication of these two new books and spotted inaccuracies immediately which gives us cause for concern. We have previously complained over recent years that these two authors have rehashed the work of long standing campaigners without referencing claiming old evidence is new, left out decades of campaigner history in a podcast and promoted a plagiarist.

We are not impressed by the quality or accuracy of reporting and have seen far better from regional journalists who take time to listen and understand important themes and really study the evidence so this does not bode well for the books. Some journalists appear intent on putting themselves at the heart of the investigation into the scandal and in doing so insult and betray those harmed by contaminated blood. These books are not our focus because if we so wished we are more than capable of writing our own, they forget, we ARE the experts with the decades of lived experience and despite everything we have suffered, we still managed to research, make documentaries with trusted media and receive awards for our work… we led the way, others sinply follow.

We feel its important to highlight the terrible decline in mainstream media ethics and standards. As campaigners, we are appalled at how some journalists now use their power to cancel people out or attack them. We have experienced this ourselves. We have also watched as innocent activists and members of political parties have been set up and defamed by the media, for example by the press promoting the weaponization of antisemitism to silence voices in support of Palestinian rights. How could we possibly trust or work with any journalist engaging in such dirty and unethical behaviour which is the opposite of everything we stand for.

We don’t even feel the need to name the new books as our loyalty is to Sir Brian’s work which is so much more relevant and important to us. It was very hard to trust at first but we have grown to respect Sir Brian. He has a well measured and empathetic approach and great insight into what he is studying in terms of evidence and a very astute mind. We feel he actually cares about those infected and affected and this is not something we have had from some of the corporate media that came into our lives. The Report from Sir Brian which was originally intended to be published in Autumn 2023 has been delayed by several months but this is in the interest of thoroughness and fairness to the many people criticised as they must have time to respond and we understand this.

However we give credit and thanks to some very committed national mainstream media journalists that regularly reported on our campaign efforts in the past such as James Meikle. We also thank the excellent regional journalists that engaged with us where we jointly run campaigns including the Northern Echo in the 1980s and the awarded Bad Blood campaign with the Newcastle Journal and Chronicle and other north-east based media. We also appreciate the ongoing collaboration with Sam Volpe. We value the work we did with Mags Gavan and BBC Newsnight team at the time of the Archer Inquiry nominated for a Royal Television Society award. Thanks also go to Meridian that made the Blood Brothers documentary instigated by Colette featuring her and husband and boys from Lord Mayor Treloar College which again was given an award. In addition regional media in Kent and Worcester that worked with Colette.

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”.

Haemophiliac Peter Longstaff (deceased) who received regular monthly payments from the Macfarlane Trust and wife Carol Anne Grayson who now receives regular monthly payments as a bereaved widow from EIBSS.

(Image Grayson /Journal Archives)

The following Freedom of Information request has been submitted today (25th August, 2023) to the Department of Health and Social Care

To whom it may concern

Contaminated Blood/Haemophilia HIV monthly payments “for life”

I am writing with regard to haemophiliacs infected with HIV through contaminated blood products, their infected partners and infected and affected bereaved partners who were registered with the Macfarlane Trust. For many years they have received regular monthly payments. These are now paid through the English Infected Blood Support Scheme (EIBSS) since the Macfarlane Trust was scrapped.

Some years ago, as a committed member of the Macfarlane Trust Joint Partnership Group, following a meeting with the Dept of Health, myself and other beneficiaries were informed in person at one of these meetings that,

“the regular monthly payments will continue until the last infected and affected person remains alive.”

This gave huge reassurance to concerned registrants that had feared they might stop and I conveyed this to my legal team of that time.

As part of an MFT newsletter sent to registrants, (which I have in my files at home, also submitted to my current lawyers) the following was stated by Martin Harvey, CEO,

“Part of the restructuring process arising from the Long Term Review includes addressing the current rigid system that surrounds regular payments. From the outset I want to make sure the following message gets through, regarding the rumour suggesting the Trust is going to cut or cut out regular payments. This information is incorrect and just not true, so I hope that is now clear.”

The commitment to regular monthly payments “for life” was repeated over the years to registrants on the schemes both infected and affected.

The scrapping of the Macfarlane Trust and transfer to EIBSS in 2018 has caused huge anxiety in that registrants, many in poor physical health and suffering from depression and PTSD fear they might be betrayed once again by government and this commitment given to those with HIV, their infected partners and infected and affected bereaved partners that monthly payments would continue “for life” would be reneged upon. What did not help matters was that the most committed registrants that had given so much time and energy to contributing to the Joint Partnership Group were deliberately left out of the meeting with Gerard Hennessy, the government appointed mediator to discuss registrants concerns over the scrapping of Macfarlane and 4 other trusts. Nor were they sent questionnaires to elicit their opinions on the move until AFTER the closing date for submissions. This flew in the face of government statements that all registrants, relevant persons had been consulted and caused great hurt and distress to those haemophiliacs and their families that were cancelled out.

1. Under Freedom of Information, I ask the government what discussions and action has been taken by government officials regarding ensuring regular monthly payments for infected and affected formerly under the Macfarlane Trust now EIBSS continue “for life”?

2. What action does the government intend to take to write to former Macfarlane Trust registrants through EIBBS as a matter of urgency to reassure sick and dying haemophiliacs, infected partners and infected and affected bereaved partners that this commitment will be fully upheld as promised?

3. Will government ensure that this commitment is also equally extended to haemophiliacs, their infected partners and infected and affected bereaved partners receiving monthly payments for hepatitis C through EIBSS after receiving contaminated blood products and that they also receive written notification to reassure them monthly payments are for life?

A copy of this letter will be sent to Sir Brian Langstaff, Chair of the Infected Blood Inquiry, who is very much aware of the importance of keeping these monthly payments “for life” as part of lawyers submissions representing core participants and which he was urged to adopt as one of his recommendations. Further copies will be sent to the Haemophilia Society who also fully support this, my legal team, fellow campaigners and my MP Nick Brown.

I look forward to your response.

With thanks

Yours sincerely

Carol Anne Grayson

Contact details supplied

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”.

Carol Anne Grayson and her husband Peter Longstaff who was killed by the state after receiving contaminated blood. Grayson alleges Terrence Higgins Trust are “haemophobic” presenting a very selective narrative of haemophilia history

(Image Grayson archives)

As a result of haemophiliacs infected with HIV and hepatitis viruses during the 1970s and 80s initiating a legal case against the Department of Health and other authorities, in what was to end in an out of court settlement in 1991, the Macfarlane Trust was set up to provide financial support to haemophiliacs infected with HIV and their families. Haemophiliacs are a distinct patient group recognised as having an inherited bleeding disorder. They became infected through the use of factor concentrate treatment used to help their blood clot. This was often imported from the US where “high- risk” donors such as homosexuals, prisoners, drug addicts, sex workers and “skid row donors” were targeted for their plasma which was sold to international pharmaceutical companies. It only took one infected donor in a plasma pool to cause an infection in a haemophiliac recipient and it is now known that plasma pool sizes were far higher in the US and could reach as high as 400,000 donors.

Haemophiliacs were never compensated in 1991, incriminating documents only seen years later were kept out of court and litigants received an “ex- gratia” payment which differed in amount depending if a haemophiliac was married or single. To add insult to injury, haemophiliacs were made to sign a controversial Undertaking, nicknamed the “waiver” which meant most haemophiliacs signed away their rights not knowing they were infected with hepatitis C as test results were withheld until after they signed. Sometimes patients would not be notified until years later as was the case of this author Carol Anne Grayson’s husband, Peter Longstaff, a severe haemophiliac with less than 1% clotting factor infected with HIV and hepatitis viruses. In a legal opinion sought by Longstaff from the then Head of the Bar Association, Matt Kelly QC, he commented on evidence submitted by the couple direct from the 1991 litigation papers stating,

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.”

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.

Haemophiliacs engaging with the Macfarlane Trust have experienced many challenges over the years and there were concerns at how registrants were viewed and treated by those running the organization. It was sometimes a fraught relationship for beneficiaries and rarely easy. Haemophiliacs fought for improvements in both financial and other support but what they didn’t expect was that a Trust they were assured by their lawyers decades ago was set up “for life” would one day be scrapped. This came to a head in 2018 when Macfarlane was closed down and monies from the Trust were transferred to the UK’s biggest sexual health charity, the Terrence Higgins Trust (THT). This was accomplished by deliberately excluding the longest standing campaigners from a meeting with a government mediator to discuss any concerns and some haemophiliacs and families did not receive questionnaires to elicit their views until AFTER the closing date. This transfer far from being seen as an improvement is now regarded by those infected known as “primary beneficiaries” and directly affected partners as an absolute disaster. THT website reflects their lack of understanding and selective approach to the haemophilia community. They state,

What is haemophilia?

Put simply, people with haemophilia bleed for longer if they get a cut. It’s an inherited (genetic) condition which mainly affects men, although women can be carriers (meaning they can pass it on to their sons) and can have a mild form of the condition.

THT website definition of haemophilia continues a decades long misogynistic attitude which fails to recognize that women diagnosed as haemophiliacs, can sometimes bleed severely and can bleed in different ways to men due to their biological identity. Also that many of the most problematic bleeds for haemophiliacs are internal causing joint damage, THT state,

Here is how THT represent the infection of haemophiliacs with HIV,

How are haemophilia and HIV connected?

During the late 1970s and early 1980s, haemophilia treatments were made from donated blood. Some of this blood came from people who had HIV or other blood-borne viruses, such as hepatitis C, so thousands of people with haemophilia (or who needed transfusions for other reasons) were infected. This is often referred to as ‘the blood scandal’.

Blood is now screened and factors are heat treated.

There is no mention of “high-risk donors” being used in the manufacture of factor concentrates.

THT continues,

Many haemophiliacs did not know that they had been infected until years later – this led to many partners and children also becoming infected. A long battle began with the UK government in a bid to secure compensation.

https://www.tht.org.uk/hiv-and-sexual-health/living-hiv-long-term/haemophilia-and-hiv#:~:text=In%20the%201970s%20and%201980s%20around%205%2C000%20people%20with%20haemophilia,than%20250%20are%20still%20alive.

There is no mention of that fact that positive HIV/HCV test results were deliberately withheld from haemophiliacs sometimes for years. This is why haemophiliacs that were subjected to experimentation and suffered violations regarding the Nuremberg Code highlight the importance of pre and post test HIV and HCV counselling. Haemophiliacs question whether THT has now abandoned this in their emphasis on opt out counselling through A and E departments? Nor is their mention that lawyers were alleging gross negligence and government failures regarding “duty of care”. There is no mention either of the long fight for improved health care, passporting regarding disability benefits for those infected by the state or the need for specialist counselling as well as compensation by counsellors that understand the needs of a very specific patient group and know their history.

Initially, some haemophiliacs tried to work with THT but soon found staff were often unwilling to listen and appreciate their life experience and viewpoint and their history which was different to that of many in the gay community that THT were initially set up to represent. The Achilles heel for haemophiliacs in their obtaining the full backing of THT was what appeared to be an underlying resentment of the fact that haemophiliacs had been infected BY the state supplying infected blood products and not through sexual practice or sharing needles. This was translated into what some viewed as haemophiliacs been seen as an “innocent” party to their infection whilst in their eyes others were judged regarding routes of infection. The fact of how haemophiliacs acquired their multiple infections is quite simply a fact and one on which litigation has been based plus the setting up of a public inquiry to investigate what went wrong. The Inquiry includes looking at whole blood cases and thalassaemia also infected through blood transmission. This author alleges that it is the route of infection for haemophiliacs that has created a “conflict of interest” for THT and long held resentments which have now descended into toxic “punishment” of those infected and directly affected within the Macfarlane haemophilia community.

Grayson argues that this negative attitude is a form of “haemophobia”. The definition of haemophobia is “an extreme irrational fear of blood”. In the case of THT this is not necessarily the fear of blood in the physical form but rather the narrative of blood infection as it relates to haemophiliacs that must be controlled, ignored and cancelled out.

In the history of how haemophiliacs came to be infected is the harsh reality of how the blood of gay men was sold to pharmaceutical companies to be used in the manufacture of factor concentrates. In fact, US legal depositions obtained through the instruction of Grayson to her UK lawyers, Milners, shows that gay men were actively targeted for their “hepatitis rich blood” used in vaccine and other research and the surplus was added to the factor concentrate pools. Plasma wagons would be parked outside the gay bath houses of San Francisco as AIDS was emerging. Gay men were reluctant to stop donating as this was viewed as a sign of equal rights with straight donors. In addition, some closet gay men used the selling of their blood as a sign as “proof” to their families that they were “straight” so selling their blood had another useful purpose and overcame the need for safety first.

In the early 2000s, Grayson had contact with journalist Paul Cunningham of RTE who covered the Lindsay Tribunal and was awarded for his reporting on how haemophiliacs in Eire came to be infected through contaminated blood products. During this period, Grayson had been sent a collection of gay donor advertisements from a friend in Canada an advocate for infected haemophiliacs. Cunningham was interested to checking this out further in the making of his documentary titled, Bad Blood and once concluded, he received an Irish Film and Television Award.

As part of his investigations, Cunningham travelled to the US to investigate plasma collection at Louisiana State Penitentiary where male prisoners often practised unprotected sex with other inmates, some gay or bisexual and some due to the absence of female sexual partners. Grayson wrote to Inquiry investigators highlighting the importance of Cunningham giving evidence and he was duly contacted officially to provide a testimony. Under the heading Targeting Gay Men As Donors, Cunningham states,

As I said previously, one of the issues that we investigated was the deliberate encouragement of gay men to donate blood and/or plasma by US pharmaceutical companies

Charles Kozak, an American lawyer we interviewed for the film, told us that “homosexuals had built up a resistance to Hepatitis because of their sexual practices”. The “drug companies” therefore recruited gay men as donors as Hepatitis B antibodies in their blood was desirable.

He added,

We contacted Donald Francis, a former employee of the Centers for Disease Control and Prevention of the United States (hereafter, the ‘CDC’), the leading national public health institute. In this capacity, he advised pharmaceutical companies and tracked the development of diseases.

We met with Mr Francis in 2001. He provided us, at this meeting, with a deposition of his, that he had made prior to our meeting (Exhibit WITN3531003). As I understand it, the deposition was a supplemental expert report that is now a public court document in America.

The handwritten annotations on the copy attached to this statement are my notes and comments. The video testimony that we took of Mr Francis for the film closely mirrors the deposition.

He explained that “since 1996”, he learned that Cutter, Baxter and Alpha “collected plasma from urban homosexual men for Hepatitis B immunoglobulin (HBIG) production; used that same plasma in the manufacture of Factor VIII and IX concentrates prescribed for hemophilia; and continued to market this dangerous product after it was well-established that the source plasma presented the worst possible risk of AIDS to haemophiliacs”.

I saw this process as a perfect design for infecting haemophiliacs with HIV.         

In Donald Francis’s words, “the same conduct that made urban homosexual men valuable plasma donors caused multiple other diseases that made this population inappropriate donors for any other blood or plasma product”.

Since THT have taken over the Macfarlane monies this is a part of haemophiliacs’ history which THT do not discuss. Instead, the current CEO Richard Angell has promoted gay men donating today but without any public acknowledgement of how gay men donating in the past led to many deaths within the haemophilia community and the trauma experienced by those still living now having to go to THT for money for counselling. Ironically changes to UK blood donation were made recently to include gay donors invited to discussion groups on how this should happen were carried out without any discussion with infected haemophiliacs to debate this openly and allay any fears they may have had, it was all about promotion of gay rights, haemophiliacs were not even a consideration regarding any potential safety concerns.

Once THT took over the Macfarlane Trust monies, they increasingly failed to listen to those infected and began to talk for them without understanding their history, specific needs and their complicated and hugely traumatising life experience. A letter was sent in 2021 from the Haemophilia Society and several campaign groups to request that they stop acting as the voice of the haemophilia community but to no avail. Grayson alleges this form of haemophobia from THT is about power and control and reducing the narrative of the Contaminated Blood scandal with its dark history of experimentation and human rights abuses.

Since then THT have announced their funding of Jason Evans, Factor 8 Group, the son of a haemophiliac who died from HIV who appeared for the first time in the media around 2017 promoting FAKE timelines of discovery of documents and distorting haemophilia history. This goes against the principle of fighting for truth and justice and plays down long standing haemophilia campaigners suffering of having incriminating evidence blocked from the 1990s onwards, ignored by government officials and “inadvertently trashed by junior civil servants”.

The question is, why would THT want a FALSE history presented, that would cause yet more trauma to victims, what is in it for them and why would they wish to SUPPRESS the truth? Is this haemophobia raising its ugly head and ensuring the TRUE history is not presented by THT. Evans who briefly highlighted the gay donor ads 2 decades AFTER Grayson first received hers is now silent on their significance and fails to acknowledge that campaigners highlighted this reality all those years ago. Instead, he places himself at the centre of the blood narrative in the media promoting LIES which are then published by unethical journalists whether by accident or design.

Questions to THT from beneficiaries of the scrapped Macfarlane Trust are delayed or totally ignored. This includes how THT are spending the transferred Macfarlane monies, the Tender process for research funding, how much Evans is being funded and what research he is carrying out. The only thing THT will provide money for is counselling which some beneficiaries can get for free anyway, yet THT will provide counselling or nothing. Attempts to seek funding for anything else is swiftly declined.

There is now a battle for the truth on social media. Haemophiliac Andrew Evans infected with HIV as a young boy has begun a daily tweet repeating the same questions each day, with Grayson joining him with her own questions. Evans tweeted,

Dear @THTorguk and @Factor8Campaign, Please explain in detail your financial relationship. Also,

@JasonEvansF8 please explain in detail how you are spending money given to you from the former MFT via @THTorguk and private donations. Thank you.

Followed by,

Day 17. No further along. No acknowledgement, certainly no response. No respect. No dignity. No accountability. Just contempt.

Postive- WomenOrg Frankie, an anonymous account from a woman infected via her haemophiliac partner tweeted,

Contempt, disrespectful clone of MFT. You continue to cause further damage by denying our right to understand how the MFT money is spent and what exactly are you giving funds to

@Factor8Campaign for. Appalling behaviour from both of you

@bloodinquiry

Another account by the name of Positive Woman drew attention to issues over failure to minute meetings and how funds are being spent.

Primary beneficiaries in first User Group insisted minutes were taken as had been the case for Partnership Group of former Macfarlane Trust. We were closed down. Cancelled out. Why?

and

We are beneficiaries of a restricted fund. Primary Beneficiary term for infected which

@THTorguk refuse to recognise. They push use of the term Service User to invalidate our right as all beneficiaries to restricted funds.

@bloodinquiry

Mark Anthony Ward, another haemophiliac infected as a child also known as Haemosexual presenting the rights of gay men as a gay man himself tweeted,

The UK’s biggest #HIV charity

@THTorguk has continued to ignore legitimate concerns from a small vulnerable group of HIV+ people which they ignored for 40+ years Is that compassion or abuse?

Grayson draws attention to the failure of THT to pay her the back money she is owed due to a historic mistake to her monthly widow’s allowance where they wrongly means tested the disability part of her state benefits. She has received an apology and acknowledgement from the English Infected Blood Support Scheme (EIBSS) set up in 2018 who paid her some back money from that date. However, they were unable to pay any before 2018 and the Cabinet Office referred Grayson to THT for the money owed before that date. Grayson said,

I allege THT are practising a haemophobic agenda against myself and others. Their attitude towards me is cruel, callous and comtemptuous. If they can afford to fund a non- infected, non- haemophiliac plagiarist they can surely afford to pay back money owed to the widow of a Primary Beneficiary who was an infected haemophiliac. They are punishing me by withholding what I am owed through a mistake where I am the injured party after all I have suffered already. I am aware they have helped other partners/widows of haemophiliacs, writing off loans so why am I being denied help? I was left in a very vulnerable financial position for years forced into debt due to a mistake by an official body meant to support me. This caused immense stress and made my depression and PTSD worsen. Although THT write to government claiming to speak for the rights of the haemophilia community and calling for compensation, their actions towards myself and others, cancelling out, blocking and silencing infected and affected and withholding back money do not match their words.

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”.