Despite being given 2 awards for challenging a government report into Contaminated Blood in 2006 my dissertation research was repeatedly blocked by several organizations
The BBC reported this week that “Government officials have apologised for using a discredited report into the contaminated blood products scandal that left thousands of NHS patients infected with viruses including HIV.” The report is known as the Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991. The title itself a lie as the UK has never achieved self-sufficiency in blood products. It was referred to by government as the “definitive” report into how haemophiliacs became infected with multiple viruses including hepatitis C and HIV and was used to back numerous controversial decisions by the government. See following link,
“Contaminated Blood Report full of Lies”
The government have indeed apologized to Baroness Featherstone who to her credit approached Sir Christopher Wormald recently on this issue however the one person they haven’t yet apologized to is the author of a twice awarded dissertation both critiquing and challenging the Self-Sufficiency report over a decade ago. That author is myself, a widow who lost both her husband and brother-in-law both haemophiliacs to contaminated blood.
Haemophilia Society trustees (supposed to advocate for victims of this scandal) allegedly blocked my report from its website for years only recently changing their stance in 2017 with the arrival of new staff and a general apology for the behaviour of the past though no mention of this specific incident. The block was despite it being minuted by a former CEO that the Society would place my research on their website. The question is who blocked it and and why? One former employee of the Haemophilia Society, Dan Farthing-Sykes (now Haemophilia Scotland) did decide to help me in his own capacity by putting the dissertation on CD for distribution to campaigners and anyone else that wanted a copy.
The All Party Parliamentary Group for Haemophiliacs and Contaminated Blood were also sent a copy of my dissertation with a letter offering to discuss my research with MPs but this was never taken up by the APPG. I did however find 30 other ways to distribute the research, as part of my award was some funding to help educate on the findings.
So here is some background and timeline of challenges to the government’s report from myself but first a quote from the Haemophilia Society that did actually recognize the problems with the publication which makes it all the more strange that they blocked me.
Margaret Unwin of the Haemophilia Society stated,
“The Government has already admitted that it has shredded many of the documents that refer to the time period in question, but that still doesn’t explain the strange assortment of references they have made in the report- ranging from clinical journals to the Sun Newspaper. (She goes on to say) This document is greatly flawed and has, I believe been produced to deflect the call for a wide-ranging public inquiry into the whole issue. The report has been produced internally, informally and very poorly by the Department of Health. It is not public, not an inquiry and merely reflects the views of the Department itself.”
(Haemophilia Society Website, 26th Feb, 2006)
She goes on to say,
“Reading the report- which does not have a named author- it appears to be a fairly blatant attempt to gloss over the details of the events of the time and even to lay blame at the door of the patients themselves.”
(Unwin, Haemophilia Society Website, 28th Feb, 2006)
Points from myself
- The Self Sufficiency in Blood Products in England and Wales from 1973 to 1991 report (published 2006) was written as a direct response to a dossier of documents sent by the Newcastle Journal and myself in our joint “Bad Blood” campaign begun by the excellent Louella Houldcroft (former reporter at the Newcastle Journal) and I around 1999/2000. Louella did a great job and won 2 awards for health reporting, writing numerous stories on this when the national media were afraid to pick up on some issues. Louella wrote her stories using many of the documents I had researched which were checked out by the newspapers’s legal team before publication.
Dept of Health report is on the following link,
BT Young Journalist of the Year 1999 (Runner Up)
Winner of the North East Cordner Awards, Health Journalist of the Year, 2000 and 2001
2. In 2006 following the death of my husband Peter a haemophiliac infected with HIV, hepatitis B and C and exposed to new variant CJD, I went to Sunderland university and wrote a research dissertation critiquing and challenging the DOH report showing what was important wasn’t what was in the report but what was left out. In order to do this I legally acquired copies of many documents held in a Newcastle solicitors office Blackett Hart and Pratt (formerly Deas Mallen Souter) which was part of the generic evidence in the 1991 HIV litigation. (My late husband was a litigant). The documents were not seen by haemophiliacs at the time and the case did not go to court with government refusing compensation and opting for some financial support through the MacFarlane Trust.
I utilized copies of documents the government stated in writing to me were “inadvertently destroyed by a junior civil servant” some years back along with former Health minister Lord David Owen’s files. Owen gave a commitment for the UK to become self-sufficient in blood/blood products. He complained to the Parliamentary Ombudsman regarding his missing files and has supported my research in writing. Lord Warner stated this destruction of documents “should not have happened” but no one was held accountable for destroying key evidence.
3. In 2006 I returned copies of many of these destroyed documents that formed part of my dissertation to government via a solicitor for release to the public via the National Archives at Kew. Documents are being released in batches and the return is covered in legal letters, Hansard (2006) and the Guardian (2006) as well as the Newcastle Journal. I recently received a letter from the Dept of Health detailing progress of their release after writing to them questioning why they had not kept me informed as had been agreed.
My dissertation link is here, http://haemophilia.org.uk/support/day-day-living/patient-support/contaminated-blood/dissertation-carol-grayson-contaminated-blood-products/
My ESRC award is here, Michael Young Prize winner 2009: Tackling the blood trade (ESRC Issue 4 2009)
4. The dissertation though awarded the Michael Young ESRC (Economic and Research Council) prize in 2009 and a further international award received from COTT Committee of Ten Thousand (US Haemophilia Advocates) at Washington DC in the name of my late husband Peter and myself for services to haemophilia and to those with HIV and hepatitis viruses for “upholding truth and justice” was largely blocked for a decade by government. They refused to address the contents sending only a short letter congratulating me on my award.
In a bizarre coincidence Sir Peter Bottomley who sits on the APPG for haemophilia was asked to present me with the award in his role as a supporter of research. My fellow campaigner Colette Wintle, a female with a bleeding disorder infected with hepatitis C with whom I have campaigned for over 20 years worked very hard to highlight the contents of my dissertation but was also largely ignored.
5. In 2010, fellow campaigner Colette Wintle and I met with then health minister Anne Milton who gave a commitment to responding in writing to my research conclusions that the DOH report was a whitewash and also to continued meetings at the Dept of Health. Civil servants were present including Rowena Jecock. Colette has campaigned for many years for women with bleeding disorders and was infected with hepatitis B and C through treatment for her hereditary condition where the blood does not clot. We have worked together for over 20 years.
6. Baroness Featherstone (who had a nephew infected with contaminated blood) and Lynn Kelly (Haemophilia Wales) who also campaigns on Contaminated Blood challenged the report more recently coming to me for details of omissions in the report as they did not have the necessary evidence. They met with Sir Christopher Wormald at the Department of Health. We exchanged numerous emails where I assisted them. I wished to present my own research but was initially excluded from the meeting and only later invited after a somewhat heated discussion regarding my exclusion. I declined as I was not comfortable attending only as an afterthought and was greatly disappointed I was not encouraged to present my own research findings rather than them being discussed second hand.
7. Sir Christopher Wormald has now instructed in writing that ministers cannot use the DOH disgraced report.
8. The DOH report was previously used for years as back-up to justify key decisions made by the DOH since 2006.
9. Theresa May announced a Public Inquiry earlier this year into Contaminated Blood, an issue Andy Burnham calls “a criminal cover-up on an industrial scale.”
10. The Dept of Health is seen as not suitable to investigate themselves and the Inquiry was passed to the Cabinet office.
11. Campaigners recently met with Damien Green (Cabinet Office) to look at a way forward regarding the Inquiry but he has now resigned “after a Cabinet Office investigation found he had misled the public and MPs over what he knew about pornography found on an office computer” (see following link)
12. A chairperson to the Contaminated Blood Inquiry is due to be announced this week.
13. The BBC contacted me several weeks ago to film an interview on Contaminated Blood. I highlighted that the DOH report was a whitewash and asked if they could cover this story. They did so interviewing Baroness Featherstone and I. However they excluded the fact that I had written an awarded dissertation challenging the report in 2006 referring only to Baroness Featherstone’s recent meetings to challenge the government. I have emailed to ask why this was omitted.
The government now have a major problem on their hands…Despite haemophiliacs being infected with deadly viruses many years ago, the Department of Health don’t actually have a “definitive” report on Contaminated Blood anymore. In an ironic twist, as my campaign colleague Colette Wintle stated,
“the only ‘definitive’ report on the Contaminated Blood Scandal in England and Wales that stands right now, externally accredited and awarded is that written by Carol Grayson”
As the government have been so unreliable, victims have had no choice but to do the research themselves. The lies and false narrative from the state have delayed and denied justice to haemophiliacs and their families for decades. Many have now died and others are in very poor health with family members providing 24 hour care often unsupported. We are still waiting…
Research prize for blood campaigner (Newcastle Journal, 14th March 2009)
Carol Grayson wins award for Contaminated Blood campaigning
Praise for press campaign nearly 10 years on (Hold The Front Page) March 2nd 2009)
Carol Anne Grayson is an independent writer/researcher on global health/human rights and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She is a former 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”.