Macfarlane Trust staff (Macfarlane Trust Handbook 1999) In 2018 monies from the closed trust were transferred to the Terrence Higgins Trust

(Image via Macfarlane Trust)

The following letter was sent to Ian Green (then) CEO of the Terrence Higgins Trust on November 15th 2022, contact details supplied.

Dear Ian,

I am the widow of haemophiliac, Peter Longstaff who died in 2005 after receiving HIV/HCV Contaminated Blood on the NHS and his brother Stephen, also an haemophiliac who died of AIDS in 1986.

I am writing to you to express my grave concerns over Terrence Higgins Trust continuing to hold the monies transferred from the now defunct Macfarlane Trust as follows which I am also raising with the Infected Blood Inquiry. This is chaired by Sir Brian Langstaff and began in 2018 with the aim of investigating the circumstances surrounding the infection of haemophiliacs and some partners with Contaminated Blood and those family members and carers affected by this scandal. (The Inquiry also investigates infection of persons through whole blood transfusion.) My concerns are as follows:-

1. Concerns over whether the transfer of Macfarlane Trust monies was legal and the issue of why some registrants and long standing campaigners were excluded from having a voice regarding the scrapping of 5 Trusts?

In case you are not aware, the government lied by saying all registrants and campaigners had been consulted with regard to the scrapping of 5 trusts including the Macfarlane Trust.

At the time of the 1991 HIV haemophilia litigation, lawyers assured haemophiliacs that the Macfarlane Trust was there “for life”.

As a one time member and first female to sit on the Macfarlane Trust Joint Partnership Group, I attended meetings at Alliance House where registrants with HIV and their partners were reassured by Trust staff that the Macfarlane Trust would remain “as long as the last infected and affected person remained alive”.

Government lied saying that all registrants had been consulted on the scrapping of the 5 Trusts including Macfarlane, my campaign colleague Colette Wintle and I were informed that we, as long standing campaigners, had deliberately been left out of a meeting to discuss any concerns with a government appointed mediator.

An FOI request to government showed that some campaign groups/campaigners did not appear on a government list of campaign groups including my own. This was quite extraordinary given we now know internal government documents showed civil servants and ministers discussing incriminating documents I held and how to handle me from the early 2000s, also naming Colette and which showed our campaigning was clearly having an impact.

A letter from myself sent to Jan Barlow CEO over the future of the Macfarlane Trust went unanswered.

Some long standing campaigners did not receive questionnaires to complete regarding the future of the Trusts until AFTER the closing submission date.

We had no opportunity to discuss the scrapping of the Macfarlane Trust with our former HIV lawyers, indeed my late husband’s former lawyer only found out Macfarlane was to be scrapped through me.

2. Funding of a plagiarist.

THT have chosen to fund Jason Evans who has extensively plagiarised my multi awarded research which is supported by Lord David Owen who refers to me as the “oracle” of Contaminated Blood. Owen backed Dr Stuart Hodkinson, Leeds University, putting me forward for the Economic and Social Research Council, ESRC Michael Young Prize which I won. I was also awarded the Committee of Ten Thousand Action =Life Award along with my late husband for our service to haemophiliacs with HIV/HCV and “upholding truth and justice”. The award was given to me at a ceremony on Capitol Hill alongside the greatly respected Dr Don Francis (epidemiologist, former CDC, who was featured in the film, “And the Band Played On”) and Dr Jay Epstein (former FDA, Virology).

Mr Evans admitted to “following” me for 2 years before he began campaigning (unbeknown to me at the time) and also admitted in an email to me that he knows I want to be referenced, yet he fails time and time again to reference my work in public and the copies of thousands of government documents which government destroyed and which I saved, used in my research and awarded dissertation. He often obtains these documents via Freedom of Information from the National Archives at Kew. A Newcastle firm of solicitors returned many of these documents from my husband’s litigation files held between 3 sets of solicitors to the NA Kew on my instructions which are documented in legal letters and in Hansard where questions were raised pertaining to these documents.

In addition, Lord Patrick Jenkin and I had worked hard in 2005 to save all existing blood policy documents in all government archives (including NA Kew) obtaining a commitment that they would be preserved in case of a Public Inquiry. The Infected Blood Inquiry has assured me they now have access to all these remaining documents and I note are using them to question witnesses.

Mr Evans has rehashed many of my earlier stories which I put out in the media from 2000 with my husband as part of our awarded Newcastle Journal Bad Blood campaign and in many national publications and through our Royal Television Society nominated 2007 BBC Newsnight where I was the official researcher.

Mr Evans is claiming falsely to the media he “discovered” documents from around 2017 (many of which were used by myself to confront ministers in face to face meetings at Westminster in the early 2000s) and this falsification of dates of discovery in the media and elsewhere and failure to correctly reference, distorts the Timeline of who knew what and when and allows those who ignored key evidence to escape further scrutiny and accountability. This is quite extraordinary given that Evans was speaking at the recent launch of the Public Accountability APPG aiming to bring in a Hillsborough Law. How can you have truth, justice and accountability with false Timelines of discovery?

The Inquiry is aware of my concerns and the “conflict of interest” with Mr Evans hence the decision by Sir Brian Langstaff, Chair of the Infected Blood Inquiry to allow myself and Colette Wintle separate legal representation to him and away from the 4 original firms appointed to the Inquiry. Mr Evans is not the only one who has plagiarised my research.

I was warned before the Inquiry began I would be cancelled out of my own history re Contaminated Blood and national media due to my support for the legitimate rights of Palestinians denied them by the apartheid state of Israel. Well they have picked on the wrong woman. I take such threats very seriously!

3. Ivor Caplin, Chair of Advisors to THT and Chair of Pro-Israel Group, Jewish Labour Movement (JLM) named in Al Jazeera, Labour Files documentary

It is with growing horror that I have followed the divisions within the Labour Party over recent years and the weaponization of antisemitism and racism and have followed legal cases regarding defamation and libel which have been won by those targeted. I note that Jewish Voice for Labour (JVL) members that have supported Jeremy Corbyn are particularly under attack that have spoken out against apartheid Israel and Zionism which is NOT antisemitic. I quote the following from the BBC which refers to the Forde Report ,

John McDonnell: Labour treatment of Jewish group brutal (BBC, 27^th July)

Former Shadow Chancellor John McDonnell has accused Labour of treating a Jewish group within the party “brutally”.

Last week a report on Labour’s handling of the anti-Semitism row under Jeremy Corbyn found supporters and critics had used it as a “factional weapon”.

Mr McDonnell claims the report shows the party used its disciplinary procedures to target members of the pro-Corbyn Jewish Voice for Labour (JVL)

He said a disproportionate number of JVL members had been disciplined, suspended and expelled from the party.

Members of the group were up to 35 times more likely to face anti-Semitism investigations than other, mostly non-Jewish, Labour members, he claimed.

The JVL says it stands for “rights and justice for Jewish people everywhere, and against wrongs and injustice to Palestinians and other oppressed people anywhere”.

I take such threats seriously due to an attempt by Dame Diana Johnson MP (Labour Friends of Israel and APPG Haemophilia and Contaminated Blood and blood products) who sat on my key evidence on Contaminated Blood for years to falsely accuse me of “antisemitic conspiracy theories” for asking why she had failed to highlight the medical apartheid treatment of Palestinian haemophiliacs (whom I have interviewed) and the alleged use of Israeli Pegasus spyware on NGOs, lawyers, journalists, and activists, (now the subject of legal cases launched by UK lawyers). Johnson also breached the confidentiality of haemophiliacs and their family members (including myself and fellow campaigner Colette Wintle) during a mail-out which I believe may already be the subject of a legal challenge. I was appalled to be treated this way as someone who was brought up to read books on the Holocaust, had been invited to speak at Holocaust memorial day (which my former MP Jim Cousins also attended) and visited Auschwitz and many other important sites of remembrance. Indeed, haemophiliacs have their own holocaust referred to by lawyers as the “Haemophilia Holocaust”. I do however along with many Jews reject Zionism. You can reject Zionism without being antisemitic. Indeed I am supporting Jews whose family members died in the Holocaust who have themselves been falsely labelled “antisemitic” for standing up for the much persecuted Palestinians under Israeli occupation that have their rights removed and are being killed on a daily basis. The Jerusalem Declaration on Antisemitism states,

1. Criticizing or opposing Zionism as a form of nationalism, or arguing for a variety of constitutional arrangements for Jews and Palestinians in the area between the Jordan River and the Mediterranean. It is not antisemitic to support arrangements that accord full equality to all inhabitants “between the river and the sea,” whether in two states, a binational state, unitary democratic state, federal state, or in whatever form.

And

11. Boycott, divestment and sanctions are commonplace, non-violent forms of political protest against states. In the Israeli case they are not, in and of themselves, antisemitic.

https://jerusalemdeclaration.org/

I was shocked to see Ivor Caplin, your Chair of Advisors to THT and Chair of Pro Israel Group, Jewish Labour Movement named in the recent Al Jazeera, Investigations Documentary, Labour Files produced by award winning Richard Sanders which I found deeply disturbing. I also note there is to be a further showing of the documentary at 7pm on Sunday November 27^th by 4 women, in Hove, Rebecca Massey, Anne Mitchell, Pamela Fitzpatrick and Carel Buxton with 6 men named for discussion relating to the film as follows, Peter Kyle, Warren Morgan, Ivor Caplin, Luke Stanger, Jonathan Hoffman and Gareth Thomas. Until there have been an extensive and open investigation into the Labour Files, (which both Labour and Tory leadership are avoiding like the plague) I do not feel THT (who do not represent me anyway as I represent myself) to be a suitable venue for MFT monies which I believe should be surrendered to another body. The event posted on Twitter to take place alleges as follows:-

Al Jazeera has obtained the biggest leak in British political history, exposing how unelected officials undermined democracy within the Labour Party.

The leak, documents, emails, video, and audio files- reveals how the parties bureaucrats, whose function is supposedly to serve the interests of the party attempted to undermine members supportive of Jeremy Corbyn, Labour’s leader from 2015 to 2020.

The Labour Files show how supporters of Corbyn were smeared with false accusations of abusive behaviour, including homophobia and anti Semitism  with the clear intention of suspending or expelling them from the party.

In Brighton and Hove- anti Corbyn activists – including Hove MP Peter Kyle and his supporters (pictured below) lied and lied again in a series of events which revealed the Labour Party to be a criminal conspiracy against its members.

In its first public screening in the city, join Rebecca Massey, Anne Mitchel, Pamela Fitzpatrick, and Carol Buxton to discuss the findings of the remarkable Al Jazeera investigation.

END

Ivor Caplin is one of the men named in the documentary.

I note also Richard Angells (Terrence Higgins Trust) who was director of the main Blairite think tank Progress and linked to Jewish Labour Movement made comment on social media with regard to a well- known woman named Ella Rose who appeared in an earlier and also disturbing Al Jazeera documentary series, “The Lobby”.

The Lobby is a series of documentaries produced by Al Jazeera that investigate the influence of the Israel lobby in the United Kingdom^[1] and the Israel lobby in the United States and their relationship to the BDS movement.^{[2][3] (Wikipedia)}

^{Boycott, Divestment, Sanctions is (BDS) is a Palestinian-led movement for freedom, justice and equality. BDS upholds the same principle that Palestinians are entitled to the same rights as the rest of humanity.}

^{Israel is occupying and colonizing Palestinian land, discriminating against Palestinian citizens of Israel, and denying Palestinian refugees the right to return to their homes. Inspired by the South African anti-apartheid movement, the BDS calls urgent action to pressure Israel to comply with international law.}

^{BDS is now a vibrant global movement made up of unions, academic associations, churches and grassroots movements across the world. Since its launch in 2005, BDS is having a major impact and is effectively challenging international support for Israeli apartheid and settler-colonialism.}

https://bdsmovement.net/what-is-bds

Richard Angells said,

“One of my highlights of my year was Ella Rose asking me to speak at the JLM rally at #Lab16. “

Here is a quote regarding Rose speaking in a threating manner about Jaci Walker. (Walker who is of mixed Jewish and African descent is a supporter of Palestinian rights, a critic of Israeli policy towards Palestinians, and a supporter of the Boycott, Divestment and Sanctions (BDS) movement. She is also a member of Jews for Justice for Palestinians and the Palestine Solidarity Campaign  ) She said the mainstream media and the right of the Labour Party had weaponised anti-Semitism to attack Corbyn. (Wikepedia). She was expelled from the Labour Party.

UK Israel funding spin trips as it smears critic (Al Jazeera, 12^th January, 2017)

Quote,

Later, Ella Rose, director of the Jewish Labour Movement who previously worked at the Israeli embassy, discredited Walker, calling her a “f******g anti-Semite”.

She (Ella) boasted of having undergone training in Krav Maga, a hand-to-hand combat technique developed by the Israeli military.

“You know what, I could take her. She’s like 5ft 2in and tiny,” Rose told Robin.

Al Jazeera showed Walker the footage of Rose. She said: “If they accuse anybody of anti-Semitism it is basically as bad as kind of accusing somebody of being a paedophile or a murderer.”

https://www.aljazeera.com/news/2017/1/12/uk-israel-funding-spin-trips-as-it-smears-critics

I fail to understand how Richard Angells would support a woman who made such aggressive and threatening comments against Walker.

I note Dame Diana Johnson MP states on social media in 2018, Tonight I stood in solidarity with the affiliated Jewish Labour Movement established in 1903….(the group to which Caplin and Angell are affiliated) so no surprise given her political stance that she would sit on Contaminated Blood evidence which I sent her repeatedly (my being also a supporter of Palestinian rights and a critic of apartheid Israel.) My awarded research was sent to her 6 times, 3 times by me and 3 times by haemophiliac, Colette Wintle.

Returning to Terrence Higgins Trust, haemophiliacs and their families are a vulnerable and much traumatised patient group and the last thing they need is to be caught up in the middle of political allegations and counter allegations which have surfaced. I do not think any such concerns and allegations can be simply ignored in the current hostile political climate and as well as individuals allegedly being falsely defamed, I note that Ian Byrne Labour MP alleges he has received a death threat so all reports of intimidation and abuse must be taken seriously. This country has fought long wars alleging we are a “democracy” yet how hypocritical when interference in that process carries on without investigation. In addition, I have my own concerns about the involvement of apartheid Israel and its supporters regarding UK political parties, Tory and Labour and other institutions.

4. Further matter of money owed to me by THT

There is a further matter concerning money owed to me by THT as the Cabinet Office has directed me to you due to a now admitted past error concerning calculation of my monthly allowance but that will be dealt with in a separate correspondence.

These are the grounds on which I raise my concerns with regard to THT.

I look forward to your prompt response.

With thanks

Yours sincerely

Carol Grayson

Links

Contaminated Blood: Concerns registered with MP and Jan Barlow from 2016 over proposed scrapping of Macfarlane Trust were ignored by the CEO

Contaminated Blood: Concerns registered with MP and Jan Barlow from 2016 over proposed scrapping of Macfarlane Trust were ignored by the CEO

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”

Jan Barlow gave evidence to the Infected Blood Inquiry but had previously ignored Grayson’s email and letter over the proposed scrapping of the Macfarlane Trust

(Image via Haemophilia Society)

When rumours began to grow in 2016 over proposed scrapping of the Macfarlane Trust, the author of this blog Carol Anne Grayson was deeply shocked. She had been given repeated reassurances as a member of the Joint Partnership Group that the Trust and monthly payments would be there as long as the last infected and affected beneficiary remained alive. The trust was set up to deliver financial and other support to haemophiliacs with an inherited clotting disorder that became infected with HIV through their factor concentrate treatment during the 1970s and 80s.

Due to her concerns the following email to my MP Nick Brown was sent to Keisha Hanchard at the Trust dated 19th February 2016 marked for the attention of Jan Barlow then (CEO)

PLEASE FORWARD TO JAN BARLOW AND TRUSTEES WITH THANKS

LETTER TO MY MP NICK BROWN RE MACFARLANE TRUST DEEDS

Dear Nick,

I am concerned the new consultation document in relation to Haemophiliacs with HIV and hepatitis C might interfere with the original Trust deeds. In 1991 haemophiliacs that were litigating including my late husband signed up to an ex-gratia payment presided over by Justice Ognall which included the provision of the MacFarlane Trust. See deeds below,

Macfarlane Deeds

“To relieve those persons… who are in need of assistance, or the needy spouses, parents, children, or other dependents of such persons, and the needy, spouses, parents, children, or other dependents of such persons who have died.”

Nick please could you ask the following question of the Department of Health, Jeremy Hunt and Jane Ellison

Can the Department of Health reassure haemophiliacs, their families and their MPs that no deeds pertaining to the MacFarlane Trust will be changed and any plan to reduce or drop payments for the categories of persons within the original deeds will be discussed in full with lawyers representing haemophiliacs? 

Also how would any plans to amalgamate the MacFarlane with other Trusts affect the Deeds? When I raised this question at the time of Skipton, new trusts, funds had to be kept separate from the Macfarlane Trust?

With Thanks

Carol Anne Grayson (Widow)

To remind people what a deed is…

“a legal document that is signed and delivered, especially one regarding the ownership of property or legal rights”

Most beneficiaries and families would remain “needy” and in need of financial assistance should any financial support be pulled, so this is somewhat contradictory to the deeds. How would haemophiliacs and their families needs then be relieved and financial assistance to the existing level that they have come to rely upon then be met? How would they be relieved? This is so drastic it would surely need to be discussed with lawyers representing haemophiliacs as it goes against the original deeds. Spouses, widows, children parents are included in the deeds also. Peoples current outgoings, financial commitments which may be long term, like a mortgage are based on their current income… Surely these cuts will drive people into poverty which was not the intention of the deeds? Haemophiliacs at least need an opportunity to discuss this with lawyers so their needs can be represented to the Department of Health as the original agreement was a legal one… I did manage to track down one of the original lawyers although retired he is very much aware of what is going in and the importance of legal representation for haemophiliacs… we now need to see who takes over representing haemophiliacs and their families.

Please note also there are issues with the Guardian unfortunately misreporting haemophiliacs in a recent article as having had “compensation” cut which is of course incorrect as they never had compensation in the first place. This is being addressed separately. Guardian have issued a correction to me, but there was an error on the correction…. Guardian also incorrectly reported one person with hepatitis C as wrongly having HIV!

Kind Regards

Carol

On the 20th September 2017, Grayson then wrote a follow up letter to Barlow raising her concerns about the proposed scrapping of the Macfarlane Trust (contact details supplied) as follows,

Concerns over loss of Haemophiliacs “Special Status” and Amalgamation of 5 Trusts

Dear Jan Barlow, (CEO Macfarlane Trust)

I am writing further to my telephone conversation with Keisha regarding the special status of haemophiliacs and the forthcoming amalgamation of the MacFarlane Trust with other Trusts.

Signing of document

I am unable to sign the form regarding amalgamation of 5 Trusts right now as it would not be “informed consent” due to many legal questions remaining unanswered. I will explain further in this letter.

Allegedly illegal Consultation

Neither can I accept the widows’ £10,000 one off payment at this time as the longest standing campaign groups were EXCLUDED from the pre-Consultation meeting with the government mediator. This issue is still not resolved, the Consultation is deemed to be undemocratic, unethical and allegedly illegal because of this and due to amalgamation of the Trusts without consulting original solicitors for haemophiliacs. The amount is also a huge insult to a widow who saved the NHS £7.2 million in care costs looking after her husband over a long period according to a professional care assessor for the Archer Inquiry.

The terms the “worst treatment disaster in the history of the NHS” (Lord Winston) and “a criminal cover-up on an industrial scale” (Andy Burnham, former Secretary of State for Health) refer to the haemophilia community specifically NOT whole blood cases which have always been kept separate legally and must remain so. See following link…

Lord Morris of Manchester rose to ask Her Majesty’s Government what new help they are considering for people with haemophilia who were infected with hepatitis C by contaminated National Health Service blood products and for the dependants of those who have since died.

12 Mar 2002 : Column 765

The noble Lord said: My Lords, the purpose of this debate—I speak as president of the Haemophilia Society—is to focus parliamentary and public attention on the now burning sense of injustice felt by a small and stricken community.

Ninety-five per cent of people with haemophilia treated before 1985—some 4,800 people—were infected with hepatitis C—HCV—by unclean NHS blood products. One in four of them was also infected with HIV. Over 800 have now died of AIDS-related illnesses from HIV infection and 212 have died from liver disease linked to HCV.

Yet, already twice stricken, the haemophilia community has now been dealt a cruel further blow. They are told by the Department of Health that blood products on which many rely crucially for their survival came from plasma donated by people who have since died of vCJD.

That briefly is the factual basis of what doctors of the highest distinction—including my noble friend Lord Winston, who is vice president of the Haemophilia Society—have described as the worst treatment disaster in the history of the National Health Service.

https://publications.parliament.uk/pa/ld200102/ldhansrd/vo020312/text/20312-25.htm

Please note the quote from Charles Gore Founder of the Hepatitis C Trust in his article.

 “Too Little, Too Late” (Therapy Today, March 2012)

“Those who received whole blood were at some, but fairly low, risk because each unit would have come from just one donor. So someone like the late Anita Roddick, who had a transfusion following the birth of her youngest daughter in 1971, was unlucky to contract hepatitis C. However those who received blood products, such as clotting factors, were at very high risk because these products were made from the pooled blood of hundreds of donors. It only needed one of those donors to be infected to make the product unsafe. Added to that, whereas whole blood in the UK was collected from volunteer donors, much of the blood used to make blood products was sourced from commercial companies and these were mainly in the US, where donors were paid for blood and were often prisoners or intravenous drug users, among whom hepatitis C was very prevalent. Most at risk were haemophiliacs who required multiple treatments with clotting factor. Almost all – about 5,000 of them – were infected with hepatitis C, and about a quarter were also infected with HIV. Inevitably, many of them died. Could more have been done to prevent this? Certainly the risk of blood sourced from paid donors in the US was recognised at the time; the Secretary of State for Health also promised to make the UK self-sufficient in the blood needed for transfusions and treatments, but this was never implemented. Moreover, it wasn’t just haemophiliacs who received clotting factor or other blood products, and similar numbers were infected by whole blood because more people received blood transfusions, even though the risk was smaller. The haemophilia community was the worst affected group, however, and led the campaign for compensation.”

http://www.bacp.co.uk/docs/pdf/15272_therapy%20today%20march%202012.pdf

HIV litigation 1991

In 1991 the HIV litigation, out of court settlement was overseen by Justice Ognal with solicitors’ firms acting for the Department of Health and several firms acting for haemophiliacs. This seems to have been forgotten? The government is making changes to an agreement made under legal representation, so how can they be changed now without haemophiliacs having legal representation specifically for this issue? As you will see in this old Hansard it clearly refers to legal representation.”

Mr. Alfred Morris : To ask the Secretary of State for Health, pursuant to his written reply of 12 December, Official Report, columns 364- 65, to the hon. Member for Peckham (Ms. Harman), when he will publish further details of the proposed settlement of the dispute between the Government and people with haemophilia who were infected with the AIDS virus by contaminated blood products supplied by the national health service ; and if he will make a statement.

Mrs. Virginia Bottomley : The detailed provisions of the proposed settlement are under discussion with the lawyers representing the plaintiffs. It would be inappropriate to publish further details until all plaintiffs and the court have had an opportunity to consider the full terms of the settlementand to approve them.

Hansard 14^th January 1991

https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-01-29/1991-01-14/Writtens-6.html

Mr. John Marshall : To ask the Secretary of State for Health what progress has been made with the settlement of the litigation by those haemophiliacs infected with HIV ; and if he will make a statement.

Mr. Waldegrave : I am pleased to be able to announce that a formal offer conveying the detailed terms of the settlement has now been made to the plaintiffs’ representatives. The new trust, which will administer the payments, the Macfarlane (Special Payments) (No. 2) Trust, is being set up today.

Payments can begin as soon as acceptances have been received from individual plaintiffs and the settlement has been approved by Mr. Justice Ognall. This should be within a few days.

Full details of the payments to be made under the settlement will be given once those details have been announced in open court.

Hansard 3^rd May 1991

https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-05-03/Writtens-4.html

Litigants including my late husband signed a hepatitis waiver (now deemed to be illegal, written opinion given by a former Head of the Bar, a top QC) as it could not possibly be “informed consent” given that haemophiliacs were not told their hepatitis C status at that time or that it was a deadly virus and key evidence relating to both alleged negligence and chances of winning was withheld from them. There is a statement from a lawyer saying “I can no longer lie to my clients” which is deeply disturbing and there were allegedly serious lies on both sides which now need to be examined.

Regarding what haemophiliacs were told. They were informed by their solicitors that payments for them and their partners were “for life”.

They were also given a “special status” which separated them from whole blood cases as stated in Hansard by Virginia Bottomley (then health) and this cannot be changed retrospectively.

There were several reasons for this discussed in Hansard and in legal documents that made haemophiliacs different to whole blood and this is why they were never lumped together as one group but viewed as 2 distinct groups. Lord Archer of Sandwell recognized this as former Solicitor General as did the late Lord Morris of Manchester, Minister for Disabled as does Lord David Owen (former Health Minister who “strongly endorses” my research dissertation into contaminated blood as “by far the most serious and comprehensive study undertaken”.

The Haemophilia Society is ONLY legally responsible for bleeding disorders while the Hepatitis C Trust caters for whole blood cases.

Differences regarding haemophiliacs deemed a “special case” and whole blood cases. This has in fact STRENGTHENED over time as more evidence had come to light making haemophiliacs a distinct patient group.

Haemophilia is an hereditary condition therefore haemophiliacs were already disadvantaged in many ways, health compromised, education, insurance, employment, financial etc, therefore this was made far worse.

“The Government recognised the arguments forcefully put to us that HIV-infected haemophiliacs were a special case. I repeat that their lifelong condition of haemophilia—which had already adversely affected their health, social, employment, insurance, and mortgage prospects—was further exacerbated by the onset of HIV.”

Hansard 20^th December 1991

http://hansard.millbanksystems.com/commons/1991/dec/20/infected-blood-transfusions

(This also applies to haemophiliacs with hepatitis C)

Often more than one family member was infected with HIV/HCV due to haemophilia running in families, brothers, uncles, cousins … plus some wives were infected. Some families had 5 and 6 family members infected with HIV and hepatitis B and C. This was catastrophic and actually led to  families falling apart as government and the Haemophilia Society tried to divide the community by virus. Haemophiliacs are a distinct patient group.

Mr. Ashley : To ask the Secretary of State for Health how many of the haemophiliacs infected with the HIV virus who have received payments from his Department were related.

Mrs. Virginia Bottomley : Among the haemophiliacs infected with HIV, we understand that there are 65 pairs and six trios of brothers who are infected. We believe there may be a significant number of other cases where HIV-infected haemophiliacs are related, for example, grandfathers, grandsons, uncles and nephews, but these cannot be readily identified from the available information. In addition, there are a number of cases where the haemophiliac’s spouse or partner has become infected.

Hansard 27^th Jun 1991

https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-06-27/Writtens-4.html

Haemophiliacs were knowingly exposed to multiple viruses HIV, Hepatitis B and C (then later exposed to v CJD) highlighted in medical journals. This multiple infection meant there was an interaction of viruses and serious implications for treatment and impact on the liver.

Haemophiliacs were given imported plasma from the US and subjected to gross safety violations and given a 2^nd class treatment from remunerated virally high-risk donors subjected to beatings and torture.

“Bloody Awful: How money and politics contaminated Arkansas’s prison plasma program”

https://www.arktimes.com/arkansas/bloody-awful/Content?oid=863387

It was known to medical professionals and government that haemophiliacs were likely to be infected with hepatitis from their first shot of imported US treatment (factor concentrates) due to pool size and sourcing from virally high-risk donors.

Dr Charles Rizza stated, “we recognised in the 70s and early 80s that all of the concentrates were infected with non-A, non-B hepatitis”  (later called hepatitis C) and  “factor VIII is still very impure it could be called a crude protein concentrate contaminated with Factor VIII” (Jad Adams, AIDS, The HIV Myth http://www.virusmyth.com/aids/books/jabmyth.htm 

Haemophiliacs were re-infected over and over again and were repeatedly exposed to different genotypes.

“Frequent Reinfection and Reactivation of Hepatitis C Virus Genetypes in Multitransfused Hemophiliacs”

http://www.jstor.org/stable/30134630?seq=1#page_scan_tab_contents

Because haemophiliacs have a pre-existing and life -long clotting disorder. Hepatitis B and C has a strong impact on liver worsening bleeds as the liver deteriorates (clotting and liver, coagulation abnormalities in liver disease) Quote, “The decreased capacity of the liver to synthesize proteins is the main cause of decreased blood levels of clotting factors II, V, VII, IX, X and of antithrombin III in patients with liver disease”. Hematol Oncol Clin North Am (Summer 1977)

https://www.ncbi.nlm.nih.gov/pubmed/1333467

Haemophiliacs were a distinct study group for unethical experimentation, evaluation of HIV and HCV tests allegedly without their knowledge and permission before tests was officially introduced.

“Haemophiliacs duped into tests”

https://www.theguardian.com/society/2003/jan/21/medicineandhealth.publichealth

Haemophiliacs used as a distinct study group for “infectivity of treatment” (Oxford Haemophilia “cheaper than chimps letter” (Newsnight 2007)

Haemophiliacs used in Trials link to BBC Newsnight

https://bleedingdisorder.wordpress.com/tag/bbc/

Brains of haemophiliacs were taken without permission, (organ scandal).

“Families Fury over Missing Organ Scandal”

http://www.hartlepoolmail.co.uk/news/family-s-fury-over-missing-organ-scandal-1-990259/amp

Product liability not applied to Haemophilia cases

Haemophiliacs had separate and distinct legal cases from whole blood and could not use the Consumer Protection Act and product liability law like whole blood cases.

Although there was hope after whole blood cases were won, in practice product liability did not extend to haemophilia cases

“NHS faces 10m bill over infected blood” (whole blood)

http://www.telegraph.co.uk/news/science/science-news/4761545/NHS-faces-10m-bill-over-infected-blood.html

Haemophilia Holocaust

The impact on the haemophilia community was so bad, it was referred to in several journals as a “haemophilia holocaust” in the US and this extended to the UK due to imported treatment.

“National Academy of Sciences convenes public hearing on HIV and blood supply”

https://www.ncbi.nlm.nih.gov/pubmed/11362355

Questions

Amalgamated Trust

How will the Special Status of haemophiliacs be upheld under an amalgamated Trust? There has been no discussion of this whatsoever.

Honeycombe Legacy Fund

Concerns have been raised to Diana Johnson MP regarding the future of the Honeycombe Foundation bequeathed to the MacFarlane Trust by a widow to help other widows whose husband was infected with HIV. How can that be legally transferred?

“Empowerment grants through the Honeycombe Legacy Fund (bereaved spouses/partners only)

• grants from the Honeycombe Legacy Fund for bereaved spouses/partners for personal development and to develop economic independence, eg academic development, skills training, driving lessons”

http://www.macfarlane.org.uk/support-for-beneficiaries.php

Reserves

What will happen to any reserves in the MacFarlane Trust? How can that be transferred to an amalgamated Trust?

Rights for life

Haemophiliacs and partners were informed by their legal representatives that they would be cared for financially for life, how will this be assured?

Can you reassure us that our rights under the 1991 HIV agreement between lawyers for government and lawyers for haemophiliacs will not be affected in any way under the proposed amalgamation of 5 Trusts and that funding will continue for haemophiliacs and their partners for life?

I am also concerned that the Scottish Consultation may be illegal?

There is no reference that I can see that haemophiliacs were assessed under “special case” but were in fact lumped together with whole blood cases, a completely different case. If so then this requires a serious legal challenge.

I look forward to your reply as a matter of urgency

With thanks

Yours sincerely

Carol Grayson (Haemophilia Widow)

Since then the Macfarlane Trust has been disbanded and the remainder of the funds transferred to the Terrence Higgins Trust, the UK’s leading HIV and Sexual Health Charity. Grayson will leave that for another day other than to say numerous member of the haemophilia community have raised concerns and written to complain over a number of isues than have arisen since the transfer.The Infected Blood Inquiry have repeately been asked to look into how the scrapping of Macfarlane Trust was allowed to take place for a trust that was supposed to be “for life” and whether the closure and transfer were legal?

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”.

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”.

One of the international awards given to Carol Grayson and Peter Longstaff in recognition of their campaigning and research in 2009

(Image via Grayson)

It is with great sadness that I watch the impact on the haemophilia community as some are realizing for the first time that Jason Evans, son of a haemophiliac, the person they considered their biggest advocate and friend regarding the Contaminated Blood scandal, is in fact a liar and plagiarist giving false timelines of discovery to the media. This is an act that far from supporting accountability from public bodies harms the case for truth and justice. How can a person even ask for this when they are deceiving haemophiliacs and their families on a daily basis?

Thousands of haemophiliascs were infected with HIV and hepatitis viruses during the 1970s and 80s through the factor concentrates manufactured to treat their inherited bleeding disorder where the blood does not clot sufficiently. Plasma used in the production of this treatment came from the highest risk sources such as prisoners, gay men, sex workers, drug addicts and skid row donors. Much of the treatment was imported from the US known to have a higher risk of hepatitis than the UK.

It was during the 1980s, that haemophiliacs first began campaigning for a full and open public inquiry, compensation, improved health care, accountability and justice. One of the earliest media campaigns supporting haemophiliacs was run by the Northern Echo and included my own family. I lost both my husband Peter and my brother in law Stephen both haemophiliacs to the Contaminated Blood scandal.

Only a few victims and their families dared to go public at that time due to extreme prejudice and fear of physical harm as angry mobs chanted outside the homes of those infected, daubing their walls with hate slogans. Despite government blocking and destruction of incriminating documents, refusal of a public inquiry and denial of wrongdoing, a small number of committed activists continued to fight on for decades refusing to give up. They acquired copies of key evidence, generated new media campaigns, worked with supporting politicians, made documentaries, petitioned parliament, attended debates and produced an awarded dissertation.

Haemophilia campaigners were there long before the internet and social media were introduced which made campaigning so much easier with almost instant contact and the ability to mobilize far greater numbers of infected and affected, plus discrimination was not as prolific as in the 1980s.

In 2017, Jason Evans arrived on the scene, who to naive and vulnerable campaigners starting out for the first time, appeared as a shining light with a commitment to reveal to the world “new” evidence he had discovered and work towards exposing what had gone wrong. What Evans failed to reveal was that in actual fact the vast majority of evidence he presented was the work of others that were being plagiarised with any reference to their research omitted.

In order to claim evidence as “new” Evans had to ensure those that carried out original research and campaign work were cancelled out and their discoveries had to be replaced with false timelines. This unethical practice went totally against the fight for truth and justice. For example, if a campaigner had submitted incriminating evidence in a direct meeting face to face with a minister at Westminster in 2002 and that evidence had been suppressed and not acted upon, it only made matters worse when Evans presented this evidence years later with a falsified date of discovery from 2017 onwards. What it did was let government and other public bodies off the hook and collaborate to cover up the truth, denying justice.

One infected widow told me how Evans had admitted to her he was giving journalists false dates so he could get stories in the media. She thought it was a one off but he continued to make it his modus operandi without a thought for those he was harming by ommission, having to fight to uphold their reputation as researchers. As far as Evans was concerned, their work didn’t exist, nor did they.

Much of the documents claimed as “new” by Evans and his theories, analysis and allegations were taken from myself, old media stories and the documents that I had discovered which formed part of an awarded dissertation. He was able to source my copies of the 1991 HIV litigation documents (which included many papers on hepatitis) that government had destroyed and which I discovered as part of my late husband Peter’s legal files in Newcastle. After Pete died, I went to university and wrote a dissertation critiquing the so called “definitive” Department of Health, Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991. I showed what was important, wasn’t so much what was included in the report, but the incriminating documents that were left out. Following the writing of the dissertation in 2005/6, I instructed lawyers in Newcastle to return the documents to the Dept of Health legal offices where they began to assess and release the papers in batches as part of an agreement with me.

I had already released many documents myself into the public domain earlier as part of my ongoing work with the media such as the Newcastle Journal Bad Blood campaign run jointly by Newcastle Journal and my husband Peter and I. The documents were so sensitive, press articles were often delayed until evidence passed the scrutiny of legal offices for fear of litigation against the paper. (None ever came!) The documents were then sent by lawyers on my instructions to the National Archives at Kew for anyone to access under the Freedom of Information Act. Jason and other campaigners were then able to FOI the papers which was my intention providing the correct date of discovery was acknowledged and the documents referenced to myself as the person that had discovered and analyzed them first in her dissertation.

I should also state that in 2005, Sir Patrick Jenkin and I had worked to save and ensure that ALL existing blood policy documents and anything related to haemophilia, HIV, hepatitis, v CJD held at NA Kew and other government archives were saved. Our intention was to stop government destroying important evidence and preserve as much material as possible in the hope of a future public inquiry.

Just before the Infected Blood Inquiry began under the Chair of Sir Brian Langstaff, Evans began his media campaign and founded Factor 8 Group. I first became aware of him when a researcher from Panorama rang me requesting all my incriminating documents so they could go out under the name of Jason Evans who had been chosen to front the programme. I was very shocked at the total disregard for my own work and the proposed rehash. I did however offer to participate in the programme myself, explaining my own research and documents but this was declined. In response to this and the risk to my reputation as an awarded researcher, I threatened to litigate if my documents were used without referencing. The resulting programme was a watered down version of what had been planned with less focus on Evans.

At the time the Panorama programme went out, an ITV journalist who was making another feature piece wrote the following email to me, (see below). We had discussed what was being done to me regarding the documentary and he looked at the evidence of my work which Panorama had requested and a recent article about the forthcoming programme. The Panorama researcher was very specific about what material she wanted which she said I had referred to in my Radical Sister blog and she needed the actual papers. The ITV journalist empathised with my situation saying,

I’m sorry to hear you are being put under stress at the moment.  As a Journalist I can understand to some degree your frustration at the situation you are facing. Having your hard work being passed off as someone else’s must be deeply upsetting especially as you yourself have worked for the BBC in the past. I’ve read both articles and it’s clear that what’s being broadcast this evening isn’t anything that’s not been in the public domain before.

Perhaps with the degree of scrutiny journalists (especially at the BBC) are under with social media the truth will come out at some point.

For what it’s worth I think it’s obvious you’ve put so much work into exposing this terrible injustice, work which is incredibly admirable and to be applauded.

I’m sorry if I’ve contributed in any way to the stress you’ve experienced.

I’ll be watching tonight with a more enlightened view on the programme.

If you are interested I’ll keep you informed of my progress with my programme.

In 2017, I sent the following emails to warn Collins Law of their clients behaviour following a phone call to their office.

Email sent from Carol Anne Grayson to solicitor Des Collins dated 10th May 2017

Dear Des Collins,

Totally disgusted that your client Jason Evans is trying to pass off documents I submitted to the Archer Inquiry several years ago and part of my award winning dissertation on contaminated blood as his own research.

http://www.politics.co.uk/opinion-formers/economic-social-research-council-esrc/article/esrc-research-supports-world-blood-donor-day-message-on-bloo

My late husband and I spent 23 years collecting evidence and documents some of which were part of our piece with Newsnight 2007 for which we were nominated for RTS award. Pete will be turning in his grave that one of our own community could behave in such a despicable way.

Guardian press at the time of Archer with documents I shared

https://www.theguardian.com/society/2007/may/25/health.politics

and here is the Daily Mail rehash with Jason Evans and Panorama

http://www.dailymail.co.uk/news/article-4489910/NHS-tainted-blood-scandal-hushed-health-chiefs.html#readerCommentsCommand-message-field

Jason is cutting off his nose to spite his face as what he doesn’t have is the wider evidence… What he does have is access to the documents that I had returned to government via my solicitor as government trashed their own, now released in batches via National Archives as instructed by myself and solicitor.

The Haemophilia Society admitted today they know Jason is lying, they admitted that much. What kind of sick person does this to a widow who lost 2 family members to contaminated blood.

https://www.theguardian.com/film/2012/feb/22/oscars-newcastle-nurse-campaigner-film

I have copied in Colette Wintle with whom I have shared my documents.

END

E-mail sent from Carol Anne Grayson to Des Collins 11th May 2017

Dear Mr Collins, (Re documents I returned to government)

Can you please ask your client Jason Evans to stop saying documents that I had put into the public domain and have shared with several solicitors over the years are “new”. Listen in at 2.19.  

http://www.bbc.co.uk/programmes/p050zkg3

Let me explain for clarity. These are documents WHICH I DISCOVERED from MY HUSBAND’S litigation files and were accessed legally for my dissertation research (old firm disbanded, retired). They were later returned to the Department of Health around 2006 via our solicitor of that time letters record this AND they were also submitted to Archer Inquiry. Some could not included by Lord Archer as there was no remit for negligence in the Archer Inquiry

This is why I was given an award for using these same documents to critique a government report….  DOH Self Sufficiency Report 2006 which was a SHAM!

These are the documents now released in batches via the National Archives. Solicitors were meant to destroy these files but for some reason those in Newcastle DID NOT and had been passed across different legal firms that took over through the years. The government wrote to me saying they had “inadvertently” destroyed their own documents and wanted these back. Make of that what you will! I had requested that documents be kept in a neutral place via my solicitor but was overruled.

https://www.theguardian.com/society/2006/may/21/health.medicineandhealth

The scandal is not that new evidence has emerged but that key evidence was IGNORED for years, some of which is in my dissertation and dozens of media articles and in letters to government, doctors and the Haemophilia Society that also managed to destroy key records. All of which will be shared in a public inquiry or court whichever comes sooner, waiting for advice on that.

To say these documents are new is a FALSE narrative… and we have had enough of those. The DOH are supposed to reference and inform me as each batch is released but as governments change as Andy Burnham MP has told me information is not passed on and civil servants told him the matter was closed. I have now written back to government to ask why their part of our written agreement is not being carried out and should have an answer soon or will return to the solicitor that assisted me at that time out of the goodness of his heart as I had no funds to pay him!

I know Jason is searching for the truth but that shouldn’t be through making claims which don’t stand up. Jason has no idea what I have shared or with whom. I can only say that a recent legal opinion echoes what I have alleged for years and that is the questionable role of some solicitors that had all this evidence and sat on it… at least in my area!

I have copied in my campaign colleague, the Haemophilia Society and solicitors who have been made fully aware of the circumstances pertaining to my returned documents!

Perhaps now they will also listen more closely!

Some of the things Jason is saying are almost a repeat of my own words, it is really disturbing! If he is going to use my evidence at least have the bloody courtesy to quote me.

Yours sincerely

Carol Anne Grayson

End

Email sent from Carol Anne Grayson to solicitor Des Collns dated 6th July 2017

Dear Mr Collins,

I am writing to make you further aware that the Craske, Walford documents are neither “new” nor “secret” as falsely reported in the Daily Mail Article. They have been in the public domain for some time.

Daily Mail article here http://www.dailymail.co.uk/health/article-4662690/Patients-infected-contaminated-samples.html

and my 2006 dissertation chapter 4 from page 49 onwards here and in appendix, chronology

http://haemophilia.org.uk/support/day-day-living/patient-support/contaminated-blood/dissertation-carol-grayson-contaminated-blood-products/

There have been several other incidents recently where my documents have been claimed as “new” by others in the media and it has wasted a lot of my time having to seek corrections but pleased that when journalists have seen original documentation that they have obliged and removed the word new.

Although I wish you well in your case it is completely wrong to portray this evidence as new or secret in 2017.

I have little choice but to make official complaints regarding the publication both misleading the public and defaming me as a researcher.

I list the following ways in which I have used and shared them over the years…. List not exhaustive as will have to go through 36 crates of evidence.

1. Part of award winning ESRC Michael Young award winning dissertation in text and appendix which is on Haemophilia Society website
2. Sent in a letter to the Haemophilia Society
3. Disseminated on CD to haemophilia campaigners with the assistance of Dan Farthing, Haemophilia Society. I still have copies.
4. Organised via solicitors in writing and on my personal instructions for these documents to be returned to government and released via the National Archives, Kew (documented in media and Hansard)
5. Dissertation shared with Andrew March of Tainted Blood which he HOSTED on his website “Slowly Slowly Catchy Monkey” at the time I was sharing many of my documents so he could win the 2010 Judicial Review against the then Secretary of State for Health on the key evidence acquired by Colette Wintle and I in 2004, original letters sent to us which no one else had in 2004 and which we still hold.
6. Presented in face to face meetings with ministers at Westminster
7. Presented in dissertation to both MPs and Lords including Andy Burnham, Diana Johnson, Paul Goggins, Lord Archer, Owen and Morris and many more as well as my own MPs
8. Submitted to both Archer and Penrose Inquiries
9. Shared with media and sent to the DOH as part of the Newcastle Journal award winning “Bad Blood” campaign” which my late husband and I ran jointly with the Journal in a dossier of documents and evidence… as a direct response DOH announced they would do their own research and produced the DOH 2006 Self Sufficiency Report which I later critiqued for my dissertation
10. Presented to lawyers and barrister for husband’s case and case of haemophiliac PM
11. Shared to obtain QC legal opinion re state of knowledge
12. Presented at a conference in the US where I was given COTT Action = Life Award
13. Shared with campaigners, lawyers in China where I was keynote speaker who were collecting evidence on global state of knowledge regarding dangers of hepatitis in blood products (Henan blood disaster). Host arrested by govt agents, so we held meets with lawyers in secret…. Documented in media.
14. Used to influence an MP sent to media to persuade her to change her mind and sign EDM for HCV infected haemophiliac.
15. Used as part of teaching sessions on powerpoint history of state of knowledge for MA Activism and Social Change, Leeds University
16. Used in hand-out chronology/timeline which I used to give media to help them understand the complicated history.
17. Shared at support week-ends for haemophiliacs where campaigning was discussed.
18. Shared with campaigners in Eire, Scotland and Wales
19. Included in my own writing.
20. Dissertation shared with Martin Harvey, Macfarlane Trust who attended my award ceremony alongside campaigner Colette Wintle, Chris James, CEO Haemophilia Society and Sue Watts, Newsnight
21. Discussed on video interviews and in testimonies
22. Shared with interviewers for HIV/HCV project.  
23. Shared in discussions with LR scientist researching blood safety
24. Included in letter to my late husband’s haematologist 2004. There is mention of Private Eye around August 2004 so will have to check whether published there also.
25. Submitted in questions to the Department of Health, further questions sent last week BEFORE publication in Daily Mail, acknowledgement received
26. Discussed, shared with Dr Harash Narang virologist specialising in hepatitis C,  v CJD
27. Discussed, shared with Dr Spence Galbraith who dedicated a copy of his book on John Snow, the Broad Street Pump to me in recognition of my research
28. Discussed with contacts at the FDA
29. Dissertation submitted by both myself and Colette to the APPG Haemophilia
30. Shared with lawyers to argue our case for Recombinant synthetic product which went to High Court to highlight dangers of blood products

It is hugely distressing to me that such lies are being told by the media incited by certain individuals more recently arrived on the campaign scene. I am a widow that lost 2 family members but despite my grief I have done all I can to disseminate the evidence writing my dissertation within months of my husband’s death. In fact as soon as I discuss my research some campaigners actually block me from groups so they can continue to assert they just found these documents. The same reason many of our media articles are not included in the Tainted Blood Timeline, we are wiped out of history.

The Haemophilia Society was asked to host papers rather than they be returned to government and out through the National Archives at Kew but they refused… so Blackett Hart and Pratt solicitors and I had no option but to return them to government as they were meant to have been destroyed … I have a letter to BHP in my files discussing my concerns and the need for a neutral place in case they were trashed by civil servants like the others. We held out on condition they were released into the public domain (not secret files) and that is what your client is now using… documents from my late husband’s legal case in 1991 but failing to reference despite being informed of this. Referencing is something done out of courtesy and respect and am very sad that some cannot honour the memory of my late husband Pete who dedicated many years to helping others. It is a sad reflection of the selfish times in which we live!

I have sent this list to this email as this is the active email advertised on your website. I will also make this letter public and open as would not wish to be accused of putting it away in a secret file.

I don’t expect you to reply, this is simply for your information.

Yours sincerely

Carol Anne Grayson

End

It is with great disappointment and anger that Collins Law failed to address the lies and plagiarism with their client and nip things in the bud in 2017. Instead Collins added to the problem by also rehashing old evidence as “new” (as highlighted in the media) and using it as the basis of a case, a Group Litigation Order launched in the High Court. They allegedly misled their other clients. This case is currently stayed whilst the Inquiry is in progress. How can this GLO case stand now with false Timelines of discovery… you can’t deceive the High Court?

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

(Image via Haemophilia Society)

Dear Mr Brown,

I write to you once again as the widow of Peter Longstaff, a haemophiliac who died in 2005 as a result of being given contaminated blood (HIV and hepatitis viruses and exposed to v CJD) in one of the UK’s worst scandals of the last 40 years, a cover-up spanning several decades. My brother in law Stephen, also a haemophiliac died of AIDS in 1986.

We are now only months away from the publication of the final report from Sir Brian Langstaff, Chair of the Infected Blood Inquiry. This is a time when we must learn lessons from the past and prepare for the best possible outcome for all those infected and affected that have suffered great harm and losses and fought so bravely for truth and justice… the haemophilia community.

Long standing campaigners (that know our history inside out) have watched Sir Brian and the Inquiry team operate with care, empathy and great attention to detail with regard to investigating and analysing evidence, listening to and questioning witnesses. For many of us trust was non existent at the start of the Inquiry due to years of lies and betrayal but now we dare to believe that Sir Brian will do all he can to produce a meaningful and effective final report. We thank him and those supporting his work.

At the time of the Archer Inquiry which was privately funded, (the late) Lord Morris of Manchester, first Minister for Disabled and a great champion of our rights worked with due diligence, compassion and understanding of our needs to produce the Contaminated Blood Bill. This would have put Lord Archer’s important recommendations including health care needs and compensation for infected and bereaved families into legislation. It would also have guaranteed that no minister or government could retract from commitments given and instead would be legally bound to implement and uphold what was written in the report. The bill of that time was known as the Contaminated Blood (Support for Infected and Bereaved Persons) Bill and can be viewed on the following link,

https://bills.parliament.uk/bills/549

On 2nd February, 2010, a letter from Haydn Lewis (an infected haemophiliac) was published in the Guardian in response to the article Contaminated Blood Bill Will Bring Justice, it read as follows,

There is only one person who has the power to make this bill law – Gordon Brown. But to date he has never spoken publicly about this issue. Surely no one in full knowledge of this issue, and with the power to make this bill law, could remain silent. The haemophilia community and all infected deserve this wrong to be righted. I write this letter with a current worse-case prognosis of six months due to HCC liver cancer caused by hepatitis C, so to finally hear the PM state his support would mean so much to my family after 30 years of waiting for some accountability.

https://www.theguardian.com/society/2010/feb/02/contaminated-blood-bill-justice-hiv

Haydn died soon after leaving a family devastated. His brother Gareth was another victim, both campaigned strenuously for truth and justice.

The reality is that some politicians, cross party, had and still do have a lot to hide, were implicated in the cover-up and at the time of Archer were more focused more on “damage limitation” for successive governments than backing a bill. As my campaign colleague Colette Wintle (a female haemophiliac infected with hepatitis B and C) recently stated,

I met with Alf (Lord Morris) and sat with him at the last debate he attended before he died and it was heartbreaking to hear how angry and saddened he was because he had not had the cross party MP’s backing him with his much needed Bill.

Nick, I recall when you were Chief Whip you blocked Alf’s bill. It may be that you didn’t fully appreciated the level of negligence by public bodies at that time. However, it would be hard not to recognize that now. The Dept of Health have recently delayed their apology as they need to get right what they are apologizing for and face an estimated bill of between £5billion to £10billion as stated in the Times recently. DOH will no doubt need more time due to the extensive list of serious failings and safety violations now firmly documented with the Inquiry. With so much money at stake, this is all the more reason that we require a bill and accountability with not only compensation payments but that the monthly payments continue to be paid through EIBBS “for life” as we were told during the Inquiry would be the case.

You now have a second chance to raise the matter of an updated or new Contaminated Blood Bill putting the full and final recommendations of Sir Brian into legislation and I request that you look at ways to initiate this process with the relevant persons in government as a matter needing urgent attention and hopefully a sponser can be found this. Those infected and affected have no time to wait or waste and are dying at an alarming rate. Our national Haemophilia Society highlighted the following on their website,

Since the inquiry was announced, we estimate that more than 500 people infected and affected by the scandal have died. More will die before the inquiry reaches its conclusions in autumn 2023. This is a tragedy which continues to take and devastate lives. 

Thank- you and I look forward to hearing from you and welcome your support.

Kind Regards

Carol

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”.

Except from a letter from Graham Ross solicitor to Chester Legal Services Commission (10th May, 2000) regarding key evidence not seen as part of an appeal to continue legal aid funding

The one thing successive governments have always provided to haemophiliacs infected with deadly viruses through their factor concentrate treatment in the 1970s and 80s is endless excuses not to compensate and in doing so made sure it divided the haemophilia community by virus, HIV and hepatitus C. This was despite the fact that ALL infected haemophiliacs fitted the very specific criteria of the Special Status (Case) on which HIV haemophiliacs were originally given an “ex-gratia” payment in the 1991 litigation where damning evidence was kept out of court.

In the mid 1990s, long standing campaigners, Carol Grayson and Colette Wintle also battled the national Haemophilia Society that rejected Grayson’s written call for “compensation on a parity with Eire” (a term she initiated) and instead much to their disgust championed a mere “hardship fund”. It was only through extreme pressure from committed activists that the Society eventually gave in to their demands and joined them calling for compensation.

Eire paid out compensation to haemophiliacs in 1996 on the grounds of “extraordinary suffering” at court levels but without putting those infected and affected through the trauma of going to court and without admitting legal liability. Evidence submitted to the Infected Blood Inquiry which began in 2018 chaired by Sir Brian Langstaff shows the case for compensation is arguably stronger than Eire, as since 1996, UK cases have been accepted legally by US pharma companies in the 2nd generation “dumped treatment” cases which include Wintle and Grayson’s late husband Peter Longstaff. The following is an old media article from 1999 to which Grayson and Longstaff’s former solicitor Graham Ross contributed, as did their friend and supporter, Lord Morris of Manchester.

Back in 1999, the Observer reported the following,

The society’s president, former Labour Minister and veteran campaigner Lord Morris, said: ‘In none of the campaigns I have been closely involved in over 34 years in Parliament – even thalidomide and the campaign for statutory recognition of dyslexia – have I had so strong a sense that no campaigning should have been necessary to right so obvious a wrong.’

As the Opposition, Labour supported the campaign. An early-day motion in November 1995 calling for compensation for hepatitis C victims was signed by 233 MPs, including 16 Labour MPs who are now Ministers.

Among them were the new Health Secretary Alan Milburn, Health Minister John Denham, Sports Minister Kate Hoey, Trade Ministers Helen Liddell and Kim Howells, and Foreign Office Ministers Peter Hain and John Battle.

Unfortunately for the Haemophilia Society, the Labour Party appears to have had a change of heart. Last year the then Health Secretary, Frank Dobson, rejected the calls for compensation, saying that he considered the ‘circumstances were different’ for those haemophiliacs infected with hepatitis C and those infected with HIV. He said there was no proof the NHS had acted negligently.

For many victims this is hard to believe. Indeed, The Observer has uncovered scientific papers in leading medical journals dating back to the early Seventies warning that Factor 8 would lead to the transmission of hepatitis C – then known as ‘non Hep A-non Hep B’.

The main reason was that, since each phial of Factor 8 contained protein from thousands of donors, it was more likely to transmit blood diseases. This was particularly true in the US, where donors were given payment. The scandal of the so-called ‘Skid Row’ donors – many were drug users, alcoholics and prostitutes – was uncovered by World in Action in 1975.

The problem for British haemophiliacs is that the poor state of the British blood services and the growing demand for Factor 8 meant a lot of blood products used in Britain were imported from the US.

An article written by doctors in the Lancet in 1975 gave a warning that in a three-month period in 1974, nine out of 18 patients at the Bournemouth haemophilia centre became infected with hepatitis C.

Their conclusion then was: ‘Commercial Factor 8 should be reserved for the treatment of life-threatening bleeds,’ and ‘should be reserved for severely affected haemophiliacs’. So why were those like Ken Holmes, with mild haemophilia, prescribed Factor 8? The World Health Organisation also warned the Labour Government of the time that, if the UK practice did not change, British haemophiliacs risked a hepatitis ‘epidemic’.

The Observer has uncovered evidence that a treatment known to kill hepatitis in the blood was available in the early Seventies. A distinguished US professor, Dr Frank Putnam, believes the knowledge that heating the blood would kill hepatitis was well known more than 30 years ago. For this reason, Germany ensured in 1979 that all its blood was heat-treated. Had this process been introduced in Britain at that time, hundreds of lives would have been saved.

Graham Ross is the solicitor who represented HIV victims and is now working with those suffering from hepatitis C. In the HIV claim, Ross won a Court of Appeal decision to gain access to confidential government documents. He is forbidden from making the contents of these documents public but has said that they indicate ‘severe neglect’.

Arguments similar to Ross’s have won support overseas. Governments in Ireland, Canada and Italy are now accepting their responsibility and are compensating haemophiliacs who have contracted hepatitis C through state-owned blood laboratories.

In just over two weeks’ time, the Haemophilia Society will lay 113 white lilies at 10 Downing Street to re- mind the Prime Minister of those innocent British victims who have lost their lives to hepatitis C.

The facts

Hepatitis C is a virus that attacks the liver.

A master of disguise, it mutates too quickly for the immune system to fight it. There is no cure .

An initial infection is rarely noticed by the patient but in the first six months there is a 15 per cent chance of beating it. It can take 20 years before the symptoms – fatigue, jaundice, nausea, stomach, muscle and joint pains and vision loss – start to show. Liver damage can lead to cirrhosis and liver failure, or cancer. It is exacerbated by alcohol and stress. The virus can also be contracted through unsterile body piercing, tattooing, needle sharing and straws used to snort cocaine.

End

It is interesting to note that Alan Milburn (former Health Secretary) mentioned in the Observer article who gave evidence under oath to the Infected Blood Inquiry denied ever encountering Grayson in Newcastle over 2 decades ago despite her handing him a bundle of evidence on Contaminated Blood. A friend of Grayson who was present on Newcastle Quayside when this occurred, wrote a formal statement submitted to Sir Brian Langstaff confirming she witnessed the event.

Several years AFTER the conclusion of the 1991 HIV litigation, Ross made the couple aware of the Putnam evidence stated in the Observer and other evidence not considered. Grayson highlighted this both to the Archer Inquiry and The Infected Blood Inquiry showing that Chester Legal Services had refused to look at new evidence not only important for the original 1991 HIV litigation but also for a legal case launched by Grayson’s friend Peter Mossman (infected with hepatitis C) where Grayson was assisting his then QC with key documents. Papers in Grayson’s possession show a bitter battle with Chester where evidence was blocked from consideration. After years of trying to get these documents in court but repeatedly prevented from doing so, legal aid was withdrawn from Mossman’s case and the evidence suppressed.

The legal firm representing Mossman in Liverpool was later disbanded. A review of the case by a new firm of solicitors followed some time later when they took over. The firm wrote to Mossman (who has since died) but left his legal papers to Grayson and Wintle highlighting that he had a good chance of winning his case. This was the same case that had been launched regarding his hepatitis C infection way back in 1989 and where legal aid was withdrawn years later without all key evidence being seen or considered.

Government must now finally compensate and without further delay. The views of Kate Burt, current CEO of the Haemophilia Society now supporting Grayson, Wintle and Positive Women were reported in the Newcastle Chronicle, 15th May 2023, as follows,

Ms Burt went on to highlight the culpability – the Government has admitted “wrong was done” – of the authorities, adding: “Today, 40 years after the contaminated blood crisis emerged, this government is quite rightly facing a substantial compensation bill. This is not the fault of those who were infected and their families, not should it be used as an excuse for underfunding key services.

“Had the government acted quickly to acknowledge the mistakes that were made, the emotional and financial cost of the scandal would have been greatly reduced.”

Grayson stated,

Long standing campaigners have accessed, collected and shared with the Inquiry enough damning evidence showing alleged negligence, serious safety violations and potentially criminal actions regarding harm done to haemophiliacs in the Contaminated Blood scandal. We call on the government to cease making matters worse by delaying the inevitable, government must compensate those infected and affected at a substantial level for harm caused and the subsequent cover-up which only served to further damage an already traumatized haemophilia community. It is now time also for goverment to apologise for allowing Longstaff, Wintle and others to be given “dumped” US factor concentrates that violated safety regulations here and abroad and was never withdrawn from use despite very clear warnings of the dangers this treatment presented.

She added,

The campaign work by females has been further hampered by endless misogyny from the British government and some media cancelling out women who are multi awarded for their research and activism, whilst opening the door to some men who appeared at the elventh hour, who plagiarised and rehashed evidence we discovered years ago, gave false timelines to the press and thus deceiving the High Court who may be called upon to rely on this material in any forthcoming legal case.

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”.

Quote from letter sent to Carol Grayson from Leonard Levy, NHS Executive Headquarters, Department of Health 14th February 1996.

Dear George,

Thank-you for your article on Contaminated Blood and the cost of compensation.

UK faces bill of up to £10bn to cover blood scandal compensation (Financial Times, May 9^th 2023)

Payout expected to be extended to families of victims who contracted HIV and hepatitis C from contaminated transfusions

https://www.ft.com/content/111e2d61-4bab-4be9-a896-a35e1eb2e6d9

Feel free to publish this open letter of response to your article below, which will be placed on my Radical Sister blog.

I am the widow of Peter Longstaff and lost my husband and brother in law Stephen both haemophiliacs given infected blood (factor concentrates) infected with HIV, hepatitis B and C during the 1970s and 80s for their inherited bleeding disorder. I am now a multi awarded researcher on the subject whose research and dissertation forced the government to withdraw its so called “definitive” report labelled a “whitewash”. (See below.)

Self-Sufficiency in Blood Products in England and Wales A Chronology from 1973 to 1991 (Department of Health)

Click to access Self-sufficiency-in-blood-products-in-England-and-Wales-A-chronology-from-1973-to-1991.pdf

Government should have fully compensated haemophiliacs infected with HIV and hepatitis B and C decades ago back in 1991 but instead chose an “ex -gratia” payment to keep damning documents out of court, papers which they later destroyed or withheld from those infected and directly affected family members.

I discovered copies of these documents that had survived destruction in the offices of Pete’s solicitors in Newcastle where we live. They were part of the “discovery” phase of litigation where litigants and defendants exchange evidence. Pete and other haemophiliacs were never shown this evidence and a legal opinion at the time of the litigation that “the plaintiffs prospect of success had significantly improved both on breach of duty in negligence and Wednesbury unreasonableness and the consequential, and favourable, implications for causation.”  Further documents were discussed that had not yet been considered by our legal team and they were running out of time. There was also a note stating, “I can no longer lie to my clients.”

Once acquired legally, I used these government papers I had discovered to critique the Department of Health, Self Sufficiency report 2006 highlighting that it wasn’t what was in the government report that was most important but what had been omitted. I then organized the legal return of the documents to Department of Health solicitors that same year with an inventory. The papers were later transferred to the National Archives at Kew for anyone to access under the Freedom of Information Act. The DOH managed to destroy the letters of return but fortunately I retained mine.

I first called for compensation and a full and open public inquiry in 1994, the year my HIV infected husband was also diagnosed with hepatitis C.  Through my personal research and investigations, I came to learn and analyze what had been covered up in the 1991 HIV litigation. My appeal for compensation for my haemophilia community was blocked and denied. This was 2 years BEFORE the announcement of the well- known haemophilia compensation settlement in Eire in 1996.

In 1996, I called once more for, “compensation on a parity with Eire” government refused again. Leonard Levy, NHS Executive Department of Health wrote to me referring to the infection of haemophiliacs as a “medical accident” and “inadvertent infection”.

I continued to call for compensation, denied once again in the early 2000s when government under pressure from campaigners and aware of my incriminating evidence which they discussed behind the scenes decided to make non- compensation payments for hepatitis C. This had the effect of stopping Pete from going to court to overturn a controversial hepatitis “waiver” which haemophiliacs were made to sign in 1991 as part of the HIV litigation.

Pete and I were the first to expose the implications of the waiver which prevented haemophiliacs litigating for hepatitis C. What we were only just learning however was that Pete had been tested for hepatitis C without his knowledge and permission years earlier and the positive test result was withheld from him which also put me at risk of infection. We knew if we overturned the waiver in court it would remove the block and meant we could then continue and litigate for hepatitis C. We eventually obtained legal aid to do so. The government were aware of our plans to litigate and after discussing  the documents I held through internal correspondence (which I saw years later through the Infected Blood Inquiry) made a sudden decision to make hepatitis payments after all but not compensate. Government established the Skipton fund however this move prevented us yet again from going to court with the documents showing alleged negligence.

We called once more for full and proper compensation “on a parity with Eire” at the time of the Archer privately funded inquiry in 2007 as government were still refusing told a public inquiry. Government blocked compensation again ignoring the main recommendation of Lord Archer of Sandwell for compensation in his final report in 2009. The Archer Inquiry had investigated the infection of haemophiliacs, some partners also and the impact on families. Government officials continued the lies they had begun in 2004 FALSELY claiming Eire paid out on the grounds of “legal liability” stating they did not have to compensate haemophiliacs and families because in their view, the UK case was different. The Eire settlement was in reality paid out of court (at the same monetary levels as a court settlement) but with NO legal liability admitted by the Eire government who decided to pay out on the grounds of “extraordinary suffering” and not force haemophiliacs more stress of litigating through the courts.

Evidence that Colette and I had gathered on Eire from 2004 onwards was repeatedly sent to Lord Warner and government ministers and included a letter from Malcolmson Law solicitors in Eire representing haemophiliacs, a letter from an Eire government blood policy official supporting my arguement and a letter from the Irish Haemophilia Society.

A Judicial Review was WON in 2009 against the then Secretary of State for Health under the name of haemophiliac Andrew March who used our evidence challenging how the government reached its decision not to compensate haemophiliacs and their families as haemophiliacs alleged this was based on a false statement regarding Eire.

Government continued to refuse to compensate even after this successful High Court case.

I repeatedly warned that the years of delays was likely to cost the government a substantial sum at some stage as I and others would never give up our fight for justice.

In 2010, he term “inadvertent infection” was eventually removed for good as being entirely innappropriate and offensive to those allegedly harmed through negligence by the state after my campaign colleague Colette Wintle (a haemophiliac infected with hepatitis B and C) and I met with Anne Milton, Secretary of State for Health and presented key evidence to her.

A public inquiry was finally announced soon after Andy Burnham (then Secretary of State for Health) highlighted key documents of mine in parliament calling the haemophilia Contaminated Blood scandal, “a criminal cover up on an industrial scale”.

The Infected Blood Inquiry began in 2018 with Sir Brian Langstaff as Chairperson. Colette Wintle and I became “core participants” and aside from giving personal written and oral testimony were granted a “special arrangement” with the Infected Blood Inquiry to submit our evidence on a daily basis. (We were also granted separate legal representation for the Inquiry with Milners solicitors due to extensive plagiarization of my work and the resulting “conflict of interest” with other participants.) We also highlighted the “Special Status” of haemophiliacs argued by politicians and campaigners and accepted by Virginia Bottomley at the time of the 1991 HIV litigation. This highlighted that haemophiliacs were a “specific patient group” with an “inherited bleeding disorder” already “disadvantaged from birth” regarding education, employment and insurance and also infected not only with HIV but with hepatitis viruses also. In addition, multiple members of the same family often had haemophilia and this meant several people in the same family could be infected with multiple deadly viruses through their treatment. Bottomley referenced haemophilia studies on brothers in Hansard as an example though due to misogyny at that time, women with haemophilia were not officially recognised as they are now and there were no studies on infected sisters of which Colette is one example.

Colette and I scanned and cross referenced many key documents and submitted them to the Infected Blood Inquiry via an Investigations Officer (who was previously part of the Metropolitan Police). We gave their date of discovery, when they FIRST appeared in the public domain (if at all) their history and helped match up government blood policy papers, court depositions, videos, photographs, audio tapes and other important material so the Inquiry could understand the history of Contaminated Blood. Colette and I were told by the Inquiry that we had the largest investigation team assigned to us in the biggest ever UK public inquiry.

I should also add my husband and I led the way in early 2000s finding US lawyers to take a case against 4 US pharmaceutical companies…. Our cases were LEGALLY accepted after treatment batch numbers were traced back, sometimes to infected individually named HIV/HCV infected blood donors. The causation was not difficult to determine against already established infected batch number in the US. An agreement was reached for between 200 to 300 cases with the pharmas (with a silence clause) and all UK cases were closed in America from around 2011 going forward. The US Judge ruled “forum non conveniens” that America was not the right venue to hear these cases as the UK government was deemed to have the “first line of duty of care” regarding the treatment and safety of UK haemophiliacs.

These cases were the 2^nd generation “dumped treatment” cases where there were serious safety violations, treatment ruled not safe for the US market so dumped around the world to save losing money from withdrawn products. Evidence showed UK authorities were well aware of the higher safety risks of imported treatment and the type of “high -risk” donors used for factor concentrate products, prisoners, gay men, sex workers, drug addicts and “skid-row” donors living on the streets. Also there were the greatly increased plasma pool sizes that reached as high as 400,000 US donors in some cases but government turned a blind eye, chose not to recall unsafe products (despite written warnings) and failed to act to protect haemophiliacs.

If only government had done the right thing and compensated in 1991, this would have given haemophiliacs justice whilst many were still alive but they chose to go for the cheap option. Government used to write to me for years saying they would never “compensate” haemophiliacs and their families as this would equate to “admitting liability” and would tell us NOT to use the word “compensation” referring to payments as “ex-gratia”. With that in mind, as this was always government logic, then I take the compensation proposals now as government FINALLY admitting liability.

At every opportunity for decades government denied us a public inquiry, justice and compensation until recently. Successive governments have no one else to blame but themselves for the spiralling cost of compensation which is now matched against the damage, loss and immense suffering of infected and affected family members within our haemophilia community over a very long period of time.

Government are still working out what they need to apologise for. I can only assume the delays are due to having to consider an extensive and ever growing list of points and situations which require a sincere and heartfelt apology. I have specifically asked the government in writing via the Cabinet Office to apologise to those haemophiliacs that received dumped treatment from the US and their families which include my husband, his brother and Colette. There was never a lack of evidence to hold government to account, I and my colleague have held that for decades, rather a lack of decency and willpower from government to do the right thing, admit responsibility and compensate swiftly as in Eire.

One last point to make. Prior to the start of the Infected Blood Inquiry, I was threatened that I would be cancelled out of national mainstream media and my own Contaminated Blood history as “punishment” because I also research and campaign on other human rights issues such as Palestinian rights and highlighting the alleged war crimes and human rights violations of apartheid Israel. The weaponization of “antisemitism” was used against me by Dame Diana Johnson MP (Labour Friends of Israel) who sits on the APPG Haemophilia and Contaminated Blood. She first breached my confidentiality, then banned me from the APPG mailing list. My “crime” was to ask why as a campaigner on haemophilia rights she had not spoken up for Palestinian haemophiliacs also infected and subject to apartheid medical treatment, well documented by human rights groups. I also raised concerns over the use of Israeli NSO Pegasus spyware allegedly used to spy on lawyers, NGOs, journalists, politicians and campaigners. I was falsely accused of “antisemitic conspiracy theories” though legal cases re Pegasus have been launched in the UK. The media may wish to ask Johnson whether or not any legal case has been won against her for breach of confidentility as I am aware that at least one case was progressing and whether or not she has had to pay substantial compensation? Attempts to cancel me out will only serve as a motivator for speaking out more. I will not be silenced!

Thank-you for taking the time to read this, please acknowledge receipt.

Yours sincerely

Carol Anne Grayson (Contaminated Blood 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”.

(Image via Shutterstock)

Dear Jad, (Haemophilia Twinning Project, Palestine and UK)

How are you?

I watch with increasing despair the actions of Netanyahu and this new Israeli government and fear the ever growing impact on Palestinian haemophiliacs.

As you know I have been involved in the Infected Blood Inquiry under Sir Brian Langstaff in the UK, fighting for truth, justice and accountability for my late husband and others that were given contaminated blood, many of whom are now dead.

For the last four years, I have been threatened and cancelled out of mainstream media as “punishment” for my support for Palestinians like yourself living under occupation and subjected to conditions of apartheid but this only makes me speak out louder. Fortunately local media still interview me. You are a strong example of having to deal with apartheid medical treatment regarding haemophilia and your courage and strength is an inspiration to me.

Unfortunately my own interview and article that I wrote with you some years ago is so longer online as the Christian Aid publication Ctrl Alt Shift no longer exists. However this is a very good article below in the much respected Palestine Chronicle.

Right to Health is a Right to Palestinian Hemophiliacs Too (Palestine Chronicle, March 12^th, 2021) which can be found online, though the link will not open on wordpress.

In 2021, I approached Dame Diana Johnson (Labour, MP) who campaigns on haemophilia issues in the UK raising my concerns regarding the treatment of Palestinian haemophiliacs, asking why she did not speak out as she is a member of Labour Friends of Israel and has had a funded trip to Israel, however she then falsely accused me of “antisemitic conspiracy theories” and threatened to block me. Her comment is absurd as I have daily contact with non-Zionist Jews and Jewish groups that like myself, stand against apartheid and to uphold the rights of Palestinians as equal members of society. They are also being attacked with fake allegations of “antisemitism”.

Anyway all is not lost. I wanted to ask you if your organisation for Palestinian haemophiliacs would like to twin with our UK Haemophilia Society which I believe would have benefits for both. Therefore I am introducing you Jad, Director of the Palestinian Society For Bleeding Disorders (PSBD) to our Kate Burt, Chief Executive Officer of our national Haemophilia Society who can help make this happen. I have discussed this with her and copied her in to this e-mail, so you can look at this together. My fellow haemophilia campaigner, Colette Wintle, is also copied in. I admire your work very much and would be delighted if you would accept.

You are often in my thoughts and I will not stop fighting at my end to help end the cruel and brutal system of occupation, oppression and apartheid.

Palestine WILL be free!

Best Wishes

Carol

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”.

Baroness Masham, an inspiring campaigner on disability rights

Image via Wikimedia Commons https://commons.wikimedia.org/wiki/File:Baroness_Masham_of_Ilton.jpg

It is with sadness that Haemophilia Action UK, long standing campaigners on Contaminated Blood learn of the death of Baroness Sue Masham of Ilton DL. However it is with great appreciation that we remember her contributions over several decades to the fight for truth, justice and safe treatment for haemophiliacs infected with HIV and hepatitis viruses in the 1970s and 1980s. Baroness Masham was vice President of the national Haemophilia Society and contributed to many debates championing the rights of the haemophilia community. She was a Crossbencher and a member of the APPG on Haemophilia and Contaminated Blood. Baroness Masham appeared on the “This Is Your Life” TV programme that highlighted how she overcame her own personal challenges, Big Red Book recalls,

Susan, who was born in Caithness and was a keen rider in her youth, took a job at a stables in Swindon following her education. A riding accident in 1958 left her confined to a wheelchair, but despite her disabilities she went on to compete in several Paralympic Games, winning medals for table tennis in 1960, 1964, and 1968.

Baroness Masham was one of the first politicians to recognize the “Special Status” of haemophiliacs in 1987, that haemophiliacs were part of a “specific patient group” living with an inherited blood clotting disorder and were already impacted in terms of their education, employment and insurance. They were then impacted again with life threatening HIV and hepatitis infections through their factor concentrates containing multiple deadly viruses. There were often several members of the same family infected. Much of the treatment was imported from the US and sourced from “high-risk” donors such as prisoners, gay men, sex workers and skid-row donors. She also drew attention to the UK failure to become self-sufficient in blood products.

Hansard 10th November 1987

Baroness Masham of Ilton

My Lords, if England and Wales had been self-sufficient in blood products, as Scotland was, would the tragedy have been as great as it now is? Will he agree that those haemophiliacs have a double tragedy in suffering not only from haemophilia but also from AIDS? Are the problems of their families not also very great?

https://hansard.parliament.uk/Lords/1987-11-10/debates/d90be181-8db7-40eb-a4bf-83d2ddc1fa16/HaemophiliacsAidsInfection

(However evidence sourced by Carol Grayson, the author of this blog in the early 2000s and submitted to both Archer Inquiry and the Infected Blood Inquiry showed that Scotland was not entirely self-sufficuent. Scotland had also used imported US blood products at Yorke Hill Hospital, Glasgow, leading to a direct pay out from a pharmaceutical to the family of a child infected with HIV in 1980.)

In 1999, Dr Peter Jones and Dr Peter Hamilton wrote the following letter to Baroness Masham which the Newcastle Haemophilia Centre shared with campaigners as follows:-

Letter to Baroness Masham from Dr Peter Jones and Dr Peter Hamilton (14th Dec, 1999) highlighting the plight of Newcastle haemophiliacs shared with Grayson and Longstaff

In 2002, Baroness Masham drew attention to haemophiliacs being infected with hepatitis C and exposed to the blood of persons who had died from variant CJD as well as HIV. She specifically referred to Newcastle haemophilia HIV figures.

Hansard 6th February 2002

Baroness Masham of Ilton: My Lords, I also declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that in Newcastle upon Tyne 75 per cent of haemophiliacs have contracted HIV? In addition, bearing in mind the problems of CJD and hepatitis C, is it not time that haemophiliacs were given the safest possible form of clotting agents?

Lord Hunt of Kings Heath: My Lords, I do not believe that I can add to the response that I gave to the noble Lord. As I said, the advice that I have received is that as yet there is no evidence to suggest that there is an issue of safety between the different products. We understand the feelings of those in the community who are involved and affected by the tragic events that have occurred. We are obviously considering the matter.

https://publications.parliament.uk/pa/ld200102/ldhansrd/vo020206/text/20206-01.htm

Baroness Masham highlighted the post code lottery prescribing of Recombinant for haemophiliacs. Grayson supported her husband Peter Longstaff in his fight to challenge this which led to a case in the High Court.

Baroness Masham questioned the length of time it would take to introduce Recombinant for all haemophiliacs. Over the years treatment was rolled out by age with the youngest haemophiliacs receiving Recombinant first.

Hansard 26th February 2003

Baroness Masham of Ilton: My Lords, I declare an interest as the vice-president of the Haemophilia Society. Why are patients in Wales and Scotland receiving recombinant, which is a safer form of blood product, but not patients in England? How long will it take for all English haemophiliacs to receive it?

Lord Hunt of Kings Heath: My Lords, as I said in my Answer, we expect that the scheme will have been completely introduced by 2006. The position in Scotland and Wales is an issue relevant to the administrations there.

The number of haemophilia patients in the rest of the UK is much smaller than that in England. That is also a factor in determining the timescale for introducing the scheme completely. I can also reassure the noble Baroness that the Government will work with the Haemophilia Society to put in place a strategy to implement the scheme effectively.

https://publications.parliament.uk/pa/ld200203/ldhansrd/vo030226/text/30226-01.htm

Longstaff went on a very public treatment strike until his death in 2005 refusing human factor concentrates and never received the safer product.

As the Guardian later highlighted in 2009, 800 haemophiliacs were exposed to v CJD.

800 haemophiliacs given tainted blood at risk of vCJD

Alarming warning to hundreds of sufferers who received transfusions

https://www.independent.co.uk/life-style/health-and-families/health-news/800-haemophiliacs-given-tainted-blood-at-risk-of-vcjd-1687768.html

A year earlier in 2008, Baroness Masham challenged the governments withdrawal of funding to charities including the Haemophilia Society. She responded to a question posed by Lord Morris of Machester,

The Question was as follows:

To ask Her Majesty’s Government what review was undertaken of the extent and depth of deprivation in the haemophilia community before the decision was taken to cut the Haemophilia Society’s core grant by 70 per cent.

Hansard 9th October 2008

Baroness Masham of Ilton

My Lords, I, too, declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that one of the society’s campaigns focuses on blood safety? Is not safety in health one of the top priorities? Does she not consider the society to be a special case? We are talking not only about people with HIV and hepatitis C, but also about people with variant CJD. They really need support and help from their society.

https://hansard.parliament.uk/Lords/2008-10-09/debates/08100958000004/details

In 2018, she questioned the following regarding the Infected Blood Inquiry and devolved nations.

Hansard 29th January 2018

My Lords, will Scotland and England be treated the same? Will the inquiry cover all of the countries involved, including Northern Ireland, Scotland and Wales as well as England? There have been some problems in the case with which I was dealing with regard to compensation if you lived in Scotland and were contaminated in England, or vice versa.

https://hansard.parliament.uk/lords/2018-01-29/debates/8910A32A-6AED-40F2-AFB1-F8D141255793/ContaminatedBlood

Regarding the death of Baroness Mashan, the Northern Echo reported,

Baroness Masham of Ilton died peacefully in hospital on Sunday, the Spinal Injuries Association (SIA) said.

The charity, which was founded by Baroness Masham in 1974, said on its website: “We are extremely sad to announce that our founder and life-long president, Baroness Sue Masham of Ilton, passed away peacefully at Northallerton Hospital on Sunday 12 March.

“It goes without saying that everybody at the Spinal Injuries Association (SIA) is devastated to have lost our greatest champion.

“49 years ago, in 1974, she founded SIA and is the reason we have been able to champion, fight, serve and support thousands of spinal cord injured people ever since.

Links

Baroness Masham, Paralympian and longest-serving female peer, dies aged 87

https://www.bbc.co.uk/news/uk-politics-64947909

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”.

Extract from Walford/Harley 15th Sept 1980 letter put into the public domain by Grayson and also in her awarded dissertation on Contaminated Blood (2006)/ The letter from the 1991 HIV litigation was not not shown to litigants at that time

Dear Heather,

Good to see another article in Private Eye titled Blood Feud and dated 3^rd to 16^th Feb 2023 and that you quoted from one of the letters I released into the public domain some years ago from the 1991 HIV litigation that was withheld from litigants and which I had returned to the Dept of Health via lawyers as they had destroyed their own copy. You will also recall it was I who revealed the 1982 Rizza and Bloom, “cheaper than chimps” letter regarding experimentation on PUPS again presented to ministers in face to face meeting in early 2000s. I also used it in our 2007 BBC Newsnight where I was the researcher where we got the late Haydn Lewis to make comment as he was under Bloom and at that time had never seen the letter.

The Diana Walford to Harley letter was in my dissertation in 2006, its titled Blood Products Laboratory Possible Take Over and dated 15^th September 1980 but I obtained it in the early 2000s and also submitted it to the Infected Blood Inquiry see attached, page 17 in the Chronology, as well as the earlier Archer Inquiry and it is also quoted in my chapter 4, body of the dissertation. I featured it also in several letters to government as well as presenting it in person during meetings with ministers, early 2000s. They failed to act on it. This is why it is so important that the dates are known when campaigners FIRST highlighted evidence to government… so they can’t keep covering up.

Click to access ANNEX-A-CHRONOLOGY-OF-EVENTS.pdf

As I said to Jenni Richards KC when I gave evidence to the Infected Blood Inquiry, the documents are like old friends to me, I know them so well. Mr Snowden KC made great use of my documents in his final oral presentation, in fact my own lawyer joked that Snowden had referenced me more than his own client Mr Jason Evans who repeatedly plagiarises my work. Jason has conned so many people since he appeared in 2016 but the Inquiry can and do of course compare to the original dates of discovery (in terms of release into the public domain).

I have no problem with you using documents I released into the public domain but it would be helpful if you could actually highlight who put them there. Successive governments have tried to get away with murder because they were able to send Sir Brian Langstaff the copies I had returned (not the originals) and as the Dept of Health lawyer destroyed the original letters of return thought they had got away with it. Fortunately I kept copies. Unlike some campaigners I have never received funding for my multi awarded research but I do like to ensure a true history of the Contaminated Blood scandal is reported. Can you imagine how many haemophiliacs have died without justice since I FIRST presented the Beecham take over letter to government, over 20 years ago, it’s appalling! Colette was with me at those meetings!

I quote from my lawyers on the very last day of the Infected Blood Inquiry as follows:-

In final written and oral submissions to the Infected Blood Inquiry, Milners solicitors and Sam Stein acting for Grayson and Wintle highlighted Grayson’s critique of the government’s so called “definitive” report and its withdrawal by government on her evidence. They also praise the work of these 2 long standing campaigners.

Oral Closing

§  “…That much was admitted in the 2007 Self-Sufficiency Report, since withdrawn as a result of the compelling critique in the dissertation of our client, Carol Grayson” [Transcript 03/02/2023 Pg53, L19-22]

§  “The incredible campaigning work of Carol Grayson and her husband Pete Longstaff, a severe haemophiliac who died of his infections, should be recognised by us all. Carol and Pete did everything possible to bring this dark passage of history to light. Ms Wintle joined with Carol and, together, their campaigning became their jobs, unfunded. The basics of life and healthcare subjugated to the campaign.” [Pg72, L3-10]

§  “Carol and Colette’s work has been foundational. Other campaigners and this Inquiry have followed in the path they worked so hard to forge. They were not the only campaigners. But, as we have heard from the evidence, from politicians, they were prolific and constant. In the history of this scandal, Carol Grayson’s name and Colette Wintle’s name should be remembered, acknowledged and honoured…” [Pg73, L2-9]

Written Closing

§  “Ms Grayson played a pivotal role in ensuring that documents were preserved and that justice was done: despite the DoH’s failings in destroying documentation, Ms Grayson and her solicitors had held on to copies of the missing documentation, and Ms Grayson notified the DoH and facilitated their return to the Department. In a letter from Ms Grayson’s solicitors, Blackett Hart and Pratt (BHP), to the Treasury Solicitor dated 7 February 2006, BHP explained that it had retained copies of documentation from the HIV litigation, and that it intended to return the documents to the DoH in case the copies held by BHP were of missing or destroyed documents. BHP sought an assurance that the documents “will be preserved pending any request for access to them by Mrs Grayson, or such other persons as may have an interest in them”.^[1] As BHP explained, this letter and suggestion was instigated entirely by Ms Grayson.”  [Pg169, §505]

§  “The Inquiry heard powerful and moving evidence from those who have been campaigning for three decades. Those campaigners’ lives have been consumed by their fight for truth and justice. To try to summarise their efforts in these closing submissions would do them a disservice. Instead, we ask the Inquiry to revisit our clients’ witness statements and oral testimony. The third statement of Carol Grayson^[2] and the third statement of Colette Wintle^[3] are essential reading and set out the extensive history of the campaign;^[4] indeed their efforts were recognised by Lord Morris in the House of Lords when he spoke of them both as belonging in a “Gallery of Heroines” who had campaigned tirelessly” [Pg185, §540}

§  “One of the great successes of the campaign has been to recover and uncover a vast amount of documentation. Much of that success is attributable to Carol Grayson who, as explained earlier in these submissions, identified that Blackett Hart and Pratt may have held copies of documents destroyed by the Department of Health, and directed their return on the proviso that they would be held securely and made available for public access” [Pg189, §555]

§  “It remains unsatisfactory that there is nothing at Kew to denote the struggle to preserve the documents which now reside there. The uninitiated could easily believe that the papers relevant to the infected blood scandal were transferred as a matter of routine, rather than as the result of a decade long fight. The National Archives have thus far refused requests to add a history page to the collection, highlighting the role of Ms Grayson and certain parliamentarians in preserving the documents. Our clients consider this to be wrong: this is an important piece of history, and one which should be learnt from so that it can never be repeated” [Pg190, §558]

§  “Carol Grayson was incredulous at the report’s content and, despite being in the depths of grief over the death of her husband, she was determined to make use of her and Pete’s experiences. In Chapter 4 of her seminal dissertation,^[5] Carol carefully, comprehensively, and with devastating efficacy, deconstructed the Self-Sufficiency report. Her dissertation was so effective that it ultimately lead to the report’s withdrawal” [Pg192, §562]

§  “Without Carol’s detailed research, hard work, and dogged determination, it is entirely plausible that Government might still now be placing reliance on that report, which was necessarily an incomplete account, having been prepared without the benefit of the documents returned by Carol, through Blackett Hart and Pratt…” [Pg192, §563]

---

[1] DHSC0015865

[2] WITN1055004

[3] WITN1056009

[4] Also summarised in the campaigning A-Z earlier in these submissions

[5] CGRA0000208

Its been a difficult few years as just before the Infected Blood Inquiry began, I was threatened that I would be cancelled out of the media due to my support for Palestinians and highlighting the abuses of apartheid Israel. Some of the same people have attacked me as falsely defamed others in the Labour Party including Jews that stand up for Palestinians and of course Jeremy Corbyn, cleared of antisemitism by Forde Report.

Kind Regards

Carol

Links

Tainted blood scandal campaigners feel ‘excluded’ from Government meeting, amid fears Sue Gray exit could add to delays

https://www.chroniclelive.co.uk/news/health/blood-scandal-excluded-sue-gray-26422902

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”.