Why did person(s) at the Haemophilia Society go on their own massive shredding spree, destroying key evidence? (Image via Haemophilia Society)
Contaminated blood campaigners have had a long and often troubled relationship with the UK Haemophilia Society, the organization supposed to be an “advocate” for the community going back decades. The Society is alleged to have withheld key documents and given incorrect information and advice contributing to the deaths and subsequent cover-up of 2,400 patients through HIV/HCV infection from blood products. These were factor concentrates manufactured from pooled plasma consisting of tens of thousands of US paid donors during the 1970s and 80s. Many more haemophiliacs were infected and are now sick and dying.
Plasma was often sourced from tortured and virally infected US prisoners (photos and details supplied by relatives of inmates) ignored by then Prime Minister Tony Blair when handed in to no 10 by Lord Alf Morris of Manchester (Britain’s first Minister for Disabled people) and I in 2001. This treatment was given to haemophiliacs on the NHS and put profit before safety. For years the Haemophilia Society received funding from government and international plasma companies and was accused by many of having a “conflict of interest”.
In recent years concerns have arisen regarding the alleged trashing of key Haemophilia Society documents, wiping out much of the history of contaminated blood once held at their office.
I was alerted to this fact by Dan Farthing-Sykes (Haemophilia Scotland) a former employee of the Haemophilia Society when some of his own work disappeared after he tried to restore material and build up the archives. This was echoed by other former employees and a former volunteer worker (name withheld to protect his identity) who wrote the following regarding the Haemophilia Society on Facebook,
“To hold previous staff members at the HS to account is, basically not the point. Historically it was the Trustee Board of the organisation who didn’t push for govt accountability and gratefully accepted their medical expert groups advice without thought “the chances of factor v111 infecting a patient with HIV is between one in a thousand and two thousand”.
Of course their medical experts were the ones who, with scant exception” were in the thrall and pay of pharmaceutical companies.
Those ex trustees, in many cases from the 60’s 70’s 80’s 90’s were hoping successive governments would listen to a moral argument when they should have followed activists leads and kept the dialogue in its true form.
The trustees in the early to mid noughties appointed incompetent CEO and remained even more conservative ( with a few exceptions). Some of this Board and CEO were more interested in pharma jollies and high profile Westminster jaunts. There were committed trustees and staff but they were marginalised to the point of sacking volunteers for questioning policy.
So, I worked there for eleven years and know all of this to be true. While those complicit should hang their heads in shame it does not necessarily reflect on the current board and staff. I think they are fully aware of this and support them in their endeavours.
I post this in answer to posters who are unsure of historical events. I left the organisation with a fully documented timeline worked on by many. The previous administration seem to have lost this which is unforgivable.
Yes Carole you did all these things (referring to an earlier post detailing my efforts to expose alleged wrongdoing) but were also marginalised because what you said was uncomfortable.
Bottom line is that the younger generations of people affected by haemophilia must always remember that it was activists who eventually got recombinant for all and a new generation must continue to question all medical and financial decisions made by health departments.”
Disturbingly Dan’s valuable time at the Haemophilia Society was sometimes wasted at times as he can no longer locate his own files that he collated. He has since relocated to work as CEO for Haemophilia Scotland seeking truth and justice from over the border.
These destroyed papers could have helped give answers on went wrong to survivors of what Andy Burnham former Secretary of State for Health calls “a criminal cover-up on an industrial scale” and to the bereaved relatives.
A history of missing documents
The Department of Health (DOH) already admits to destroying many of their own blood policy documents which means their so called definitive report, “Self-sufficiency in blood products in England and Wales: A chronology from 1973 to 1991″ 2006 is nigh on useless. Link here,
I critiqued the DOH report for my ESRC Michael Young award winning dissertation written in 2006 showing that what was most important wasn’t what was included in the report… but the evidence that was left out. Link below,
The DOH also repeatedly lost any documents that campaigners sent to their offices or handed over in meetings at Westminster.
The Haemophilia Society finally agreed to put my dissertation up on their site, years after it was published and only with a change of staff. I was informed by Dan it had previously been blocked by a trustee. Ironically the Economic and Social Research Council (ESRC) prize was in the name of a politician and social scientist, Michael Young and presented to me by Sir Peter Bottomley, Chair of the All Party Parliamentary Group for Haemophilia (APPG) though in his capacity as a supporter of social sciences. As my research won not one but 2 awards, it remains a mystery as to why it took well over a decade for the Haemophilia Society to put the dissertation on their website and the DOH still haven’t addressed the findings?
Lord Archer of Sandwell did use my evidence extensively through-out the Archer Inquiry and echoed the recommendations for “compensation on a parity with Eire” (a phrase I coined years back) but the Labour government refused to implement the recommendations based on incorrect information from Lord Warner who repeatedly misled parliament and tried to argue the case in the UK was different to Eire.
This was overturned in a Judicial Review at the High Court in 2010 in the name of haemophiliac Andrew March based on letters, evidence obtained by Colette Wintle and I in 2004 from Irish lawyers, Irish haemophilia Society and Eire government. Once Ireland was shown to have paid out compensation on the grounds of “extraordinary suffering” (as opposed to liability) Westminster changed the goalposts yet again when told by a judge they must reconsider Archer’s recommendations. They came back saying they did not have to take the same approach as Eire. Once again government denied haemophiliacs and their families proper compensation based on loss and need.
Unscrupulous right-wing media misreporting
Recently some unscrupulous right-wing British media have tried to claim that documents from my dissertation are “newly discovered” in 2017 by another campaigner, thereby assisting government with “damage limitation” regarding contaminated blood. This gross misreporting helped to hide the fact that key politicians in the Department of Health were presented with the evidence years ago and did absolutely nothing to address the findings!
Ironically not only did these documents form part of my 2006 dissertation given to Anne Milton at Westminster in 2010 (witnessed by fellow campaigner Colette Wintle) but I even organized through a Newcastle solicitor to have these papers returned to the DOH to be released in batches through the National Archives at Kew. (Years back I was informed in writing that a junior civil servant had “inadvertantly destroyed” government’s own documents). Laughably my returned documents were the so called “new” documents as falsely stated in the media and were in fact old and ignored evidence!
To return to the Haemophilia Society alleged missing documents, I sent the following e-mail to Dan on Sept 11th 2017 with my questions.
Now that there is to be a public inquiry, can you please confirm who destroyed the Haemophilia Society records which you mentioned to me before. I understood you also lost a lot of material that you were compiling which would have meant a lot of time and effort wasted. This is very relevant as campaigners sent many letters and documents (evidence) to the Society over the years which would reveal a history of concerns and the Society’s response at that time. There should be records of meetings including those we attended, Society letters to government and others, campaign strategy, old pamphlets, Society newsletters, details of Weber Shandwick PR company involvement, advise to the Society from medical staff etc. It is deeply disturbing to know that they were allegedly wilfully destroyed and no longer exist.
Can you tell me, who destroyed these important records?
In what year were they destroyed?
What action was taken against the person(s) who did this?
This is Dan’s reply to me on Sept 11th 2017 regarding the alleged destroyed/missing documents
There seems to have been lots of loses over the years.
When I got to The Haemophilia Society records from the 1970s and 1980s were almost non-existent. It seems that every time the charity had moved offices some material had been lost and there were also rumours of a fire (although I now think this might not have actually happened). There relevant books of the trustee’s minutes were already missing (I think they may have been liberated by a campaigner at some point and other things may have gone at the same time) and there wasn’t even a complete set of Bulletins or HaemoFacts. I found no records from the old medical advisory group at all. I assume there would have been references to their advisory group recommendation in the missing minute books but I doubt I’ll ever know. I never saw records of letter exchanges with campaigners or anything relating to the relationship with Weber Shandwick.
While I was working on the Archer Inquiry various people either sent in, sometimes anonymously, or lent me what they had. These were usually early bulletins and I was able to get an almost complete set scanned in. I also made an effort to scan in anything else that seemed that it would be relevant, especially if it related to the actions of The Haemophilia Society as there was so little of that. This was mainly Tanner/Watters exchanging letters with various parts of Government. I left all this material at The Haemophilia Society and scanned copied shared hard drive when I left. Not long after Liz arrived I spoke to her on the phone and it was clear that quite a lot of the things that were supposed to be on the hard drive weren’t there anymore. I had some files on an old external hard drive which I returned to them but to be honest I don’t know what they have left to work with from their own records. I’m sure the hard copies of the bulletins that I didn’t have to return to people will still be there somewhere as (sadly) they didn’t take up a lot of room and are obviously important to whoever packed them up at the last move.
In terms of who took or destroyed what I’m afraid I don’t have any names for you. All I can tell you is there is much, much less there than most people think. Nothing was destroyed in my time, if anything we were building the records back up.
I hope that helps,
The Chronicle Newcastle contacted a spokesperson at the Society who said, “we are not aware of documents that were destroyed on purpose but due to changes in staff and trustees there is not a complete record of what we have held. We do have an archive that, while not complete nor fully catalogued, includes letters, publications and minutes of meetings from the 70s and 80s.” It is unclear whether this information was from the old external hard drive that Dan returned to the Society.
There is also the issue of confidentiality and security, protection of personal information, documents and letters submitted by those infected with HIV and hepatitis C, a very vulnerable community who put their trust in this organization.
Meeting with Right Rev James Jones in London
Yesterday, contaminated blood campaigners went to London to meet the former Bishop of Liverpool to discuss a way forward for the Public Inquiry into Contaminated Blood finally announced by Theresa May after more than 30 years of cover-up. The Right Rev James Jones chaired the Hillsborough Inquiry and offered his support to Contaminated Blood families. …see article from ITV
Carol Grayson (Haemophilia Action UK) Peter Mossman (Manor House Group) and Colette Wintle (Independent Campaigner for Women who Bleed) stand together in calling for a Hillsborough style Inquiry, with a panel and favour a human rights lawyer to oversee the process. The Department of Health must not dictate the remit or terms of reference for an Inquiry or oversee an Inquiry as it cannot investigate itself.
We express concern that
- So much evidence of historical value, vital for a Public Inquiry is allegedly destroyed/missing
- That long standing campaigners with the most evidence are being excluded from key meetings
- It is important that the role of the Haemophilia Society and the disappearance of documents (including Dept of Health) is fully investigated during the forthcoming Public Inquiry alongside the disappearance of government documents.
Lord Owen’s health files were also trashed
I received a phone call from Lord Owen (former Health) on Monday prior to an interview he was doing on Contaminated Blood, like me he has little hope that truth and justice will prevail though he thought there may be a little more financial support. To date the government has refused to give compensation, only providing paltry amounts where haemophiliacs and bereaved relatives must go begging to a Trust criticised by Lord Archer of Sandwell in the Archer report. This funding goes nowhere near to addressing the multiple losses experienced by haemophiliacs and bereaved relatives or their needs.
Owen put money aside in 1974 for the UK to become self-sufficient in blood products on the grounds of safety but unbeknown to him this was changed quietly without debate in parliament soon after he left office. He did his best to assist haemophiliacs in finding out what went wrong but then discovered that his own health files were also trashed.
Owen told the Guardian in 2002, “I have no wish to go to court, but I have no doubt whatsoever that if someone starts to take serious legal action, the government hasn’t got a leg to stand on.” He was also astonished that my research had been repeatedly ignored stating it was “still the best research on contaminated blood that I have read.” This begs the question, why did the British government chose to bury the dissertation when Anne Milton and DOH blood policy team made a commitment to address the findings?
Testing for HIV and hepatitis C without permission, withholding test results
On the same day as the meeting with Bishop James, an article was published by the Ham and High questioning whether haemophiliacs at a Camden hospital had been tested for HIV without their knowledge and permission. Although evidence at that particular hospital may be new to some, the issue itself is old with evidence submitted years ago to the General Medical Council, Archer Inquiry and Penrose Inquiry (Scotland).
Haemophilia Action UK repeatedly raised testing without permission for HIV and hepatitis C from 1994 and every year following. (The articles are that old some are not online only in hardcopy). Here is just one example regarding testing that remains online from 2003,
“Haemophiliacs “duped” into tests”
Testing for HIV/HCV without permission and withholding positive test results was raised in the media, with doctors, MPs, health authorities, official complaints to General Medical Council (GMC) with the Haemophilia Society, with the Dept of Health, with lawyers, with human rights organizations, with the Charities Commission, in my dissertation, Archer and Penrose Inquiry and in Europe. Test results were submitted with medical records to the GMC by a number of patients. I asked asked haemophiliacs in my dissertation questionnaire in 2006 about testing without consent and received answers confirming this was a common occurence. Some haemophiliacs went on to infect their wives when positive rest results were withheld. This was also reported in the Guardian (Feb, 2009) with regard to Haydn Lewis who has since died.
“Lewis started receiving commercial blood products in 1974 and in 1985 was told he had been infected with HIV.
“I knew from about 1984 that there was a risk I could be infected but they kept telling me there wasn’t a test available,” he said.
But in 2003 he gained access to his medical notes, which revealed that although he had tested positive for HIV in 1984, he was not informed until February 1985 – during which time, he believes, his wife was also infected with the virus. “How do you deal with that?'” he asked. “How do you cope knowing that you have given someone you love something that will kill them?”
Ham and High state in 2017, “the DoH said it was taking the accusations regarding HIV testing ‘very seriously’”…. What a joke, government have ignored testing without permission and withholding of positive test results both HIV and hepatitis C for over 20 years at least.
A haematologist informed me years ago that staff were worried about too many false positive test results on haemophiliacs in the early days so tested out the HIV test on haemophiliacs as a patient group without asking permission or informing them and then retested telling them some time later. This happened again with HCV tests, haemophiliacs were often the guinea pigs for other patient groups as far as testing was concerned and this was against the Nuremberg Code which we have raised time and time again.
I knew it was wrong to test without permission because I was involved in setting up the first guidelines for testing for HIV in the 1980s and later HCV in the 90s when I worked as a nurse and we could be disciplined, struck off for doing so without offering pre and post test counselling and giving patients their test results as a matter or urgency.
Haemophilia Society official apoplogy
The current staff at the Haemophilia Society have issued an official apology regarding past behaviour at the organization. Colette Wintle and I e-mailed and approached Jefferson Courtney on the issue providing new staff with a copy of my dissertation and some background history on the Society. We requested they put out a statement distancing new staff from past behaviour. Jeff did e-mail us saying this had been agreed and acknowledging that he could not have done so without us (it is a steep learning curve for any new staff regarding a very complicated history). The apology can be seen below and here is an excerpt…
“Failures in government policy and negligence of public bodies led to people being infected
with blood borne viruses as a result of their treatment with blood products in the 70s and
“The impact of these failures was worsened by poor communication from Government,
healthcare professionals, pharmaceuticals companies and The Haemophilia Society.
Warnings were not heeded and errors were subsequently hidden.”
See below for full statement,
Click to access Board-Statement-on-Contaminated-Blood-March-2017-1.pdf
Sad to say the contact with the Haemophilia Society is somewhat frosty. They appear to prefer dealing mainly with the children of haemophiliacs, a new generation that are largely reliant on second-hand research and documents and don’t have same the lived experience as their parents. This is no doubt easier than facing often frustrated older activists that have researched blood contamination for decades and ask challenging questions.
It is no wonder then that with all this evidence, long term campaigners are being left out of key meetings with government as Diana Johnson MP proved in a recent question to Jackie-Doyle-Price, see following,
You won’t see Haemophilia Action UK, Manor House Group or Colette Wintle on the list…. WHY? The reason is … we know too much!
What can be done in the short -term
Infected and affected should not have to wait another 6 years for an Inquiry report, that cost millions of pounds with a single recommendation as happened before. I have written to MPs and All Party Parliamentary Group (APPG) members calling for Labour to apologize for Lord Warner’s misinformation and their own failure to implement Archer’s recommendations and to call for the Conservative government to put “compensation on a parity with Eire” into practice. Yes a Public Inquiry is important but haemophiliacs do not have time on their side, widows/widowers are also now in very poor health after years of caring and there is NOTHING to stop compensation being given now as it was in Eire on the grounds of “extraordinary suffering”.
Haemophiliacs were designated as a “special case” by Virginia Bottomley at the time on the 1991 HIV litigation which separated them from whole blood cases that were not. There were a number of distinct differences. Haemophiliacs were already considered to be disadvantaged due to their inherited condition. Often more than one family member had haemophilia so a family could have multiple persons infected at the same time putting extra stress on a family. Haemophiliacs were infected with multiple viruses such as HIV, hepatitis B, C (and years later exposed to v CJD) which complicated the medical picture and treatment in addition to having haemophilia. They were also reinfected with different genotypes. Haemophiliacs had also received plasma products from US prisons so another country was involved with legal representation in the UK and US. The legal cases were seen to be distinctly separate from whole blood cases as recognized by lawyers. For example whole blood cases could go under product liability, haemophilia cases could not. Whole blood cases did not involve treatment from US prisons with the gross safety violations and abuse of human rights associated with importation. Those given whole blood were infected in the UK during a window period before testing for hepatitis C became available, often a one off transfusion and were not infected with multiple viruses with several family members infected.
We know from recent legal opinions that the chances of haemophiliacs winning legal cases on the grounds of gross negligence particularly in relation to US treatment are very good. We now know they were good in 1991, unfortunately this information (seen only years later) was withheld from haemophiliacs and their families at that time. As one lawyer wrote the evening before haemophiliacs accepted an out of court settlement for HIV infection and signed what we now know from a legal opinion to be an allegedly illegal hepatitis waiver, “I can no longer lie to my clients.” The lying must stop, documents and evidence from all relevant organizations must be preserved and justice must be done!
Contaminated blood scandal: Were vital records from the 1970s and 1980s destroyed?
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 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”.