Haemophiliacs infected with HIV and hepatitis viruses through contaminated blood during the 1970s and 80s believed their long wait for compensation was finally about to end in 2009. The Archer Inquiry was set up in 2007 by Lord Archer of Sandwell following intense campaigning by his friend and colleague, Lord Morris of Manchester, the world’s first ever Minister for Disability. The Inquiry was established to address the events surrounding the infection of 4,670 haemophiliacs according to the Haemophilia Society figures but had no remit for “legal liability” which meant some key evidence alleging liability could not be used and was returned to long standing campaigners including this author Carol Grayson. This did not however mean there was no liability.

Many haemophiliacs had already died leaving behind bereaved partners who continued their fight for justice despite their own loss and pain. Some spouses were also infected and children of haemophiliacs as highlighted in a Newcastle case which featured in old media stories.

At the time of Archer, it was extremely rare to see the (adult) child of a haemophiliac campaigning though a handful did come to support at the Inquiry which was gratefully acknowledged. As Lord Morris stated in Hansard on 30th March, 2000, the Contaminated Blood scandal was, “what my noble friend Lord Winston, among other distinguished members of the medical profession, sees as the worst treatment disaster in the history of the National Health Service. My noble friend is a Vice-President of the Haemophilia Society.” The Archer Inquiry was haemophilia specific referring to a unique patient group of persons with inherited bleeding disorders infected through factor concentrate treatment and did not include whole blood victims, an entirely separate case infected via whole blood transfusions.

One of the main recommendations from Lord Archer’s final report was “compensation on a parity with Eire”. Lord Archer echoed the campaign aim of Grayson which she initiated in 1996 and who gave evidence to that Inquiry twice and whom he credited in the body of his report. Government, determined not to pay out proper compensation, fed the lie beginning in the early 2000s that Eire had paid out on “liability” which was totally false. This was the only reason given.

Grayson and her campaign colleague Colette Wintle (who also testified at Archer) had already established in letters from Irish solicitors, Malcolmson Law, the Irish haemophilia Society and the Eire government way back in 2004 that the Eire compensation scheme was a “no liability” out of court settlement paid out at court levels on the grounds of “extraordinary suffering” so haemophiliacs would not have to endure years of additional stress taking legal action. Grayson wrote to many MPs of all parties on the 23rd February 2004 to inform them of her concerns re government lies as follows in a cut and paste image of the letter (minus her personal address),

Years later in 2009, haemophiliac Andrew March who was at that time hosting Grayson’s dissertation on his website, Slowly, Slowly, Catchy Monkey, discussed the possibility of taking a Judicial Review in the High Court, (something that Grayson had also been considering) to challenge the lies and government’s “line to take” to oppose compensation on a parity with Eire. They decided that this would be best in the name of a haemophiliac as opposed to a widow so Grayson offered to support a case if March proceeded. She was also willing to allow the original letters to be used as was Colette. March then suggested his lawyers work with Grayson. The following letter by email to the lawyers (cut and pasted, which she requested permission to show to relevant persons at the time) was submitted to the Infected Blood Inquiry set up in 2018 under Chair Sir Brian Langstaff and can be viewed here as follows:-

Grayson who sent dozens of emails of key evidence to March and his legal team and gave her time for free had only one request and that was that she accompany March when he visited his QC so she could present and explain her own research on Eire. This was agreed but never happened, March presented the evidence without her. Grayson’s awarded dissertation disappeared overnight from March’s website and she was seemingly referred to in court as “An Other” despite being public in her campaigning.

Such is the misogyny still existing in the haemophilia community that some will neither recognize that female haemophiliacs exist nor give credit to a female campaigner/ researcher, sadly a theme very familiar to Grayson and Wintle. This is also evident in Tainted Blood’s Timeline where March credits himself but TB as a group refuse to credit the person who discovered and put many of these documents together as a “collection” as part of her dissertation. The original credit for her and her late husband was removed when the old website went down and despite requests to return it has not yet reappeared.

This ongoing misogyny within the haemophilia community is a reflection of that within wider society. With regard to the Contaminated Blood campaign, instead of supporting Grayson and Wintle, the constant blocking by some so called “blood brothers” to massage their own egos, has had the effect of slowing down progress for truth and justice possibly by years whilst fellow haemophiliacs, such as Grayson’s husband Peter, an ardent feminist who supported his wife and many others died.

Interestingly however as has recently been highlighted by the Infected Blood Inquiry, it has been Grayson and Wintle whose names have repeatedly appeared over the years and been cited within internal government documents discussing the impact of campaigners going back decades and how to handle them. It wasn’t the men making the waves so much as the women and the women have the extensive back catalogue to prove it, long before most other groups even existed.

To Grayson who studied Gender, Culture and Development for her Masters Degree (Distinction) the treatment of females in the haemophilia community and misogyny they have faced in addition to the impact of the contaminated blood scandal is similar to how female activists were treated in the Black Power movement in America during the 1960s and 70s. Just substitute the word, black with haemophiliac. As Grayson wrote in one of essays, Elaine Brown speaks of gender inequality in the following quote,

“A woman in the Black Power Movement was considered at best irrelevant. A

 woman asserting herself was a pariah. A woman attempting the role of leadership

 was, to my proud black brothers, making an alliance with the ‘counter –

 revolutionary, man-hating, lesbian, feminist white bitches. It was a violation of

  some Black Power that was left undefined. If a black woman assumed a role of

  leadership, she was said to be eroding black manhood, to be hindering the

  progress of the black race. She was an enemy of black people” (Brown, 1992,

      p.357)

Those men who did support Grayson and Wintle were respected and valued, one being Steve Wintle often seen at demonstrations to campaign with his wife, the late Peter Mossman, co founder of the Manor House Group and others including from the original Birchgrove Group who gave encouragement by phone and email and turned up in person to hear Grayson and Wintle when they gave evidence at the Inquiry.

To return to the JR, not surprisingly it was won with March praised for “his” research while Grayson was left sat at home watching his interviews on TV outside the High Court whilst she mourned the fifth anniversary of the death of her husband. A Guardian article on the ruling can be read here,

Court ruling may help contaminated blood victims win higher payouts

https://www.theguardian.com/society/2010/apr/16/court-compensation-nhs-contaminated-blood

It might have been expected that the government now having been judged that their original decision regarding compensation on a parity with Eire was “infected with error” would immediately apologise for their lies and introduce an Irish type compensation scheme… but not a bit of it. The government then moved the goalposts introducing another reason stating they didn’t have to follow Eire. The lies in fact continued.

So what is the situation regarding compensation in 2022. Sir Robert Francis QC released his report in June and the main report and key recommendations can be viewed on the Haemophilia Society article written by Jessica Bomford, see below,

Independent compensation study published

In addition, Sir Brian Langstaff, Chair of the current Infected Blood Inquiry has published his interim recommendation, after inviting submissions from lawyers representing their clients and from those infected and affected. As ITV highlighted, he stated,

“I recommend that: (1) An interim payment should be paid, without delay, to all those infected and all bereaved partners currently registered on UK infected blood support schemes, and those who register between now and the inception of any future scheme; (2) The amount should be no less than £100,000, as recommended by Sir Robert Francis QC.”

Children and parents were not included in this initial interim recommendation but Sir Brian stressed that this was just the beginning and work continues. Many haemophiliacs have died since the Inquiry began, those remaining are in poor health and bereaved partners also now have health issues after decades of caring for their loved ones unsupported. It has taken so long to campaign, they are now in the older age groups.

Hopes were temporarily raised that government would finally deliver when journalist Caroline Wheeler indicated that those infected and affected would hear from government last week regarding compensation…. only to be dashed yet again when nothing materialised by 5pm last Friday.

The Haemophilia Society Inquiry team, tweeted, on the 15th August,

Good afternoon. We’ve just been informed by the Cabinet Office that there will be no announcement on interim compensation payments today. Apparently we’ll hear something ‘this week’, but have nothing more helpful to pass on to you at this stage. This cruel wait continues.

Clare Souter responded poignantly by saying,

My lovely dad, Michael Souter, passed away on Thursday. His death certificate states Hepatitis C from contaminated blood products as cause. In regards to compensation, he always said he’ll believe it when he sees it… he never will now

For some haemophilia campaigners this is their third Inquiry, Archer, Penrose (Scotland) and now the Infected Blood Inquiry. The evidence presented (where it was made possible to present it and was not blocked as with Penrose) has been damning and screams out alleged negligence and wrongdoing. Ben Harrison of Milner’s solicitors representing both Grayson and Wintle who are core participants in the Infected Blood Inquiry, and have already given evidence, wrote a recent article stating,

The government’s lethargy in responding to the interim recommendations of the Grenfell Tower Inquiry illustrates the point perfectly and gives cause for caution amongst those representing the victims of the contaminated blood scandal.

The sad fact is that many of those victims do not have time on their side and those representing them must be prepared to take whatever legal action is necessary to achieve justice for them before it is too late.

Put more simply, if the government fails to act on the recommendations of Sir Brian, then legal proceedings will inevitably ensue.

See following for full article,

Why Government’s response to blood inquiry will be a litmus test for other inquiries – Ben Harrison (Yorkshire Post, 9^th August, 2022)

https://www.yorkshirepost.co.uk/news/opinion/columnists/why-governments-response-to-blood-inquiry-will-be-a-litmus-test-for-other-inquiries-ben-harrison-3796895

UPDATE… BREAKING NEWS… Even as the author is writing, just after midnight on the 17th August 2022, the government has finally released a statement granting infected haemophiliacs and affected bereaved partners interim payments, see below,

Press release

Infected Blood victims to receive £100,000 interim compensation payment

Thousands of victims of the infected blood scandal will each receive an interim compensation payment of £100,000

https://www.gov.uk/government/news/infected-blood-victims-to-receive-100000-interim-compensation-payment

The interim recommendations of Sir Brian Langstaff have now been granted in full.

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”.