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)

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”.