Colette Wintle, a female haemophiliac who has campaigned for decades for truth, justice and compensation pictured with her husband Steve who has joined her on many demonstrations, supporting her giving evidence at 3 inquiries

Dear Fraser Nelson, For The Attention Of The Editor Of The Spectator….  Open letter Detailing My Official Complaint In Response To Dr Philip Mortimer Article

How much compensation should contaminated blood victims get? (Spectator, 29^th March, 2023)

https://www.spectator.co.uk/article/how-much-compensation-should-contaminated-blood-victims-get/

I read with utter dismay and disbelief, an article written by Dr Philip Mortimer in the Spectator dated, 29^th May, 2023. It was deeply insulting to victims of the Contaminated Blood scandal and riddled with inaccuracies. I call for its immediate withdrawal and for an apology to be made to the haemophilia community. I understand the Haemophilia Society has also written highlighting inaccuracies and that this has caused enormous distress.

Where to begin…

Firstly I wish to point out that the word “inadvertent” infection was removed from use as entirely inappropriate with regard to the infection of haemophiliacs with HIV and hepatitis viruses during the 1970s and 80s following a meeting my campaign colleague Colette Wintle and I had at Westminster with Anne Milton, (then) Secretary of State for Health at Westminster in 2010. It is indeed a “scandal”!

Lord David Owen has long alleged “gross maladministration” in his letters of complaint including to the Ombudsperson. Andy Burnham, former Health Secretary referred to the haemophilia catastrophe just before he left parliament (using a document I had discovered and repeated in his testimony to Sir Brian Langstaff) as a “criminal cover-up in an industrial scale.” In case Dr Mortimer is not aware, my late husband Pete Longstaff and others were legally accepted by 4 international pharmaceutical companies after receiving “dumped treatment” from the US where there were gross violations of safety standards. I have written to the Cabinet Office stating that government must now apologise for these cases. The first line of “duty of care” was deemed to be the UK government. Treatment which Pete received was traced back by batch numbers to a named HIV infected donor at Arkansas State Penitentiary with the help of our US lawyers as they confirmed to the BBC some years back.

Dr Mortimer writes, “the term haemophilia describes an inherited inability to coagulate blood. Mostly it takes the form of a lack of one of two plasma factor, eight and nine, which only occurs in boys.” He refers to haemophilia factors 8 and 9 but no mention of factor 11 for example. His misogyny where female “bleeders” are concerned is shocking and I refer him to a titled section of the Centre for Disease Control website titled, “Hemophilia can affect women too” (American spelling) see below,

Quote,

Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis. Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is important to raise awareness about this fact to help women with hemophilia receive the care and support they need to live healthy lives.

My campaign colleague, Colette, is a female haemophiliac infected with hepatitis B and C.

It is important to note that when cryoprecipitate was introduced in the 1960s, haemophiliacs had then for the first time a near normal life expectancy.

Dr Mortimer writes, MRC -funded and international research has led to the use of factor 8 and factor nine cryoprecipitates  and concentrates. I would add with one fatal flaw, as I have argued for decades now, this was done the wrong way round because of the almost 100% hepatitis infection rate, (the risk of hepatitis in pooled plasma being known from the 1940s). Factor concentrates should never have been introduced before a way could be found to virally inactivate, even if this meant DELAYING their introduction and maintain haemophiliacs on cryoprecipitate made from a small number of donors. Instead profit was put before safety. In the US, factor concentrates were introduced in the 1960s, earlier than in the UK and studies showed that soon afterwards there were outbreaks of hepatitis detailed in medical journals such as the Kasper and Kipnis 1972 study. This was a year before factor concentrates were officially licensed in the UK in 1973.

Donor selection was always a major factor in keeping concentrates as safe as possible. The type of “high -risk” plasma donors used in the US were also well documented in medical journals and books throughout the 1960s, prison donors, gay men, sex workers, skid row donors and drug users. Donors were also paid for their plasma as opposed to the much more carefully screened volunteer donors in the UK.  In addition plasma pools in the US could reach as high as 400,000 donors, far higher than in the UK and it only took one infected donor to contaminate a pool. The importance of having strict donor selection criteria was known in the UK way before 1985.

Dr Mortimer states, “It was only from 1986 that investigations of heat treatment proved that moderate heat would kill HIV and HCV without inactivating the concentrates.”

I allege that key evidence was submitted to Chester Legal Aid Services which refers to a much earlier date/testimony where concentrates could have been potentially virally inactivated but the evidence was blocked and legal aid closed down. Later inspection of that case and accompanying evidence by a new firm of solicitors was of the opinion that there was a very good chance Mr Peter Mossman my campaign colleague whose case it was, would have won had he been able to get the final funding to go to court.

Other European countries chose to test using a first generation hepatitis (HCV) test earlier than 1991 to “err on the side of caution” and prevent infection. The UK waited for the 2^nd generation test to come on the market this increasing the time period of exposure.

Evidence I submitted to the Infected Blood Inquiry showed that some key evidence was not even considered during the 1991 HIV litigation, haemophiliacs never got to see the evidence at that time. Damning documents were kept out of court and haemophiliacs including my husband were made to sign a controversial hepatitis !waiver” which my husband challenged legally from the 1990s. He had been tested for hepatitis C without his knowledge and permission using blood samples given to check clotting levels and positive results were withheld for years.

The Archer Inquiry was a privately funded Inquiry set up due to government covering up their alleged negligence and repeatedly refusing us a public inquiry. The Contaminated Blood scandal is 2 fold

1) How haemophiliacs came to be infected

2) The cover -up that came afterwards.

In 2009, the compensation part of the recommendations from Lord Archer (which echoed my own recommendations for “compensation on a parity with Eire” ) was blocked due to lies told by government officials whose names have been submitted many times to Sir Brian Langstaff with accompanying letters and documents from Colette and I to back up our claims. Government tried to say Eire had paid out on legal liability and the UK case was different. Eire in fact paid out WITHOUT accepting legal liability on the grounds of “extraordinary suffering” at court levels but paid out of court. Our documents were submitted as part of a Judicial Review won against the then Secretary of State for Health, under the name of haemophiliacs Andrew March whose lawyers I assisted at his request.

Penrose refused to let me give evidence in Scotland, though accessed some of the key documents I had submitted to the Archer Inquiry but without proper referencing. I was denied the opportunity to give evidence on a case at Yorkhill, Glasgow hospital where a child haemophiliac was infected with HIV through American treatment and a US pharma company paid out. I submitted legal letters on this case to Sir Brian Langstaff. Penrose was a whitewash because lots of key evidence was missing.

The Infected Blood Inquiry commenced in 2018. Successive governments refused us a public inquiry for decades during which time both haemophiliacs and other key witnesses died. I have little doubt that this was always the intention of government thinking little evidence would have survived. On the contrary, considering the passage of time a considerable number of documents were saved. These included the government blood policy documents saved by Sir Patrick Jenkin and I in 2005 at the Dept of Health, the National Archives Kew and other repositories due to our concerns at the high rate which government had been trashing key evidence for years.

I also discovered copies of the 1991 HIV litigation documents in Newcastle that were meant to be destroyed that had been exchanged during the “discovery” phase when lawyers for haemophiliacs and government solicitors exchanged evidence. I used these to critique the “definitive” government report titled, Self-Sufficiency in Blood Products in England and Wales A Chronology from 1973 to 1991 (2006). I showed what was important wasn’t what was in the report but crucially, what was left out. I was awarded the Economic and Social Research Council Michael Young Prize and the COTT Action = Life international human rights award on Capitol Hill, Washington DC for services to haemophiliacs infected with HIV and hepatitis viruses and for “upholding truth and justice”.

Had government done the right thing and compensated in the 1980s, we would not be where we are today with high estimated compensation costs running into billions, government delayed NOT the victims. However the sheer scale of the infections and subsequent cover- up has caused colossal damage. It has affected every area of an infected haemophiliac’s life and also their infected and directly affected partner’s life. We have had no peace due to having to fight day in and day out and through many sleepless nights. Wives/partners lost loved ones and through infection, sometimes children of haemophiliacs were infected, our health having to become carers for years on end was damaged, the chance to have children due to HIV, hepatitis C infections, careers, loss of earnings, loss of opportunity, the chance to build a decent pension. We have suffered extreme prejudice and discrimination and we cannot get time back… time that runs into decades. Parents and children of haemophiliacs have been impacted too.

Long standing campaigners such as myself and Colette have held shocking and incriminating evidence on the Contaminated Blood scandal for decades but every time we sent examples of incriminating documents to government they lost or didn’t document them. When we met with civil servants we were blocked further. We have now seen internal government discussions from early 2000s on how to handle Colette and I as we refused to give up. What has been put out since 2017 in the media by some high profile new campaigners is largely our old evidence which government blocked in rehashed media stories but with fake timelines of discovery…thus portraying a false narrative of events and allowing government off the hook.

I anticipate Sir Brian will find gross negligence in several areas and more than occasional malpractice, evidence submitted indicates institutional malpractice where haemophiliacs were concerned.

Whole blood is an entirely separate case with different evidence though placed within the same inquiry.

Haemophiliacs are represented by the Haemophilia Society whose legal remit cannot include whole blood cases

Whole blood are represented by the Hepatitis C Trust and must also be compensated.

I ask you as Editor whether Dr Philip Mortimer declared his potential “conflict of interest” in writing this article… his past professional positions?

House Officer posts: St Helier Carshalton, St Thomas’s Lambeth, St Anne’s Tottenham, St Stephen’s Chelsea, hospitals 1969-73:Registrar then consultant virologist PHLS Colindale I

WITN7105001_0001 1973-86. Director Virus Reference Lab Colindale 1986 with particular responsibility for HBV, HIV, HCV until retirement in 2004.

His written witness statement to the Infected Blood Inquiry can be read on their website,

https://www.infectedbloodinquiry.org.uk/evidence

The infection of haemophiliacs was not “bad luck”, a former PM has now had to apologise for that ill- judged remark but due to long alleged catastrophic failings/negligence of government and other public bodies and individuals. There may be criminal wrongdoing but a public inquiry is limited in its findings so such cases would have to be referred to the police who let us down badly in the early 2000s though have since apologised.

Sam Stein our KC stated to the Inquiry,

“We don’t apologise for our clients’ visceral anger. We don’t apologise for their desire for truth and for proper compensation for the damage done to them. Instead let me be pin-point clear – they are right to be angry, and they are right to demand compensation, right to demand change and right to demand restitution.”

Infected Haemophiliacs, their infected and affected partners/carers await compensation at the substantial levels deserved to match their extreme levels of loss, suffering and need. Compensation must also be paid to the parents and children of haemophiliacs.

I look forward to your prompt response.

With thanks

Yours sincerely

Carol Anne Grayson (Haemophilia widow)

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”.