Haemophilia campaigners presenting wreath at no 10 to remember all those who died in the “worst treatment disaster in the history of the NHS”
Open letter of complaint written to Archant journalist to highlight haemophilia facts misrepresented in a whole blood case story
I am writing to make an official complaint regarding your article on Michelle Tolley. Whilst I appreciate your covering the Contaminated Blood scandal I note you are using facts referring to the haemophilia community to represent a whole blood case which is entirely different and this causes distress to families of haemophiliacs.
Norfolk grandmother prepares to give evidence at Infected Blood Inquiry
Let me explain….
Unfortunately the Infected Blood Inquiry has put 2 very different types of cases together in one inquiry which is causing massive confusion amongst the public and media which we have highlighted from day one. These are haemophilia cases and whole blood cases represented by separate organizations and infected through different types of treatment that have traditionally campaigned separately and had separate legal cases. The Haemophilia Society represents haemophiliacs with bleeding disorders and the Hepatitis C Trust represents whole blood cases.
The statement, “the worst treatment disaster in the history of the NHS” refers to a distinct patient group called haemophiliacs. This statement was made by Lord Winston in his capacity as vice-President of the Haemophilia Society and is nothing whatsoever to do with whole blood cases. Whole blood cases are made up of people that have had whole blood transfusions for many different reasons, such as childbirth, operation, car crash victims, stabbing victims and are not a distinct patient group rather a group of people that have experienced many different conditions and are now infected with hepatitis C through their whole blood transfusions.
See here… last 2 lines of this Hansard debate.
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.
As this was 30th March 2000 death figures are now significantly higher.
“Thousands of patients were infected with HIV and hepatitis C via contaminated blood products in the 1970s and 1980s” the words “blood products” refer to haemophiliacs so this should be made clear in the article.
“Two previous inquiries have been branded a whitewash by campaigners.”
- You are referring to the Archer Inquiry specifically for haemophiliacs which was not a whitewash. It was a privately funded Inquiry covering the infection of haemophiliacs only. Lord Archer did the best he could with an extremely limited budget but this Inquiry had no legal standing. The recommendations made by Lord Archer were excellent, it would be hard to improve on them, unfortunately the government rejected them by telling lies which was highlighted in a Judicial Review won by a haemophiliac using my evidence in 2010 but government still refused to compensate haemophiliacs.
- The Penrose Inquiry was held in Scotland and did look at haemophilia and whole blood cases in the same Inquiry again causing much confusion and was considered a complete whitewash.
Michelle Tolley was given whole blood transfusions (bags of blood from unpaid British donors) which would have been given in a hospital setting here is a definition, https://www.merriam-webster.com/medical/whole%20blood
“Blood products” such as factor concentrates are manufactured from plasma pooled from thousands of donors (this could be British donors but was often from paid donors in US prisons) the plasma was then manufactured into freeze dried “factor concentrates” and put into small bottles to be mixed with sterile water and injected into the veins of haemophiliacs. The injections were often carried out at home by haemophiliacs.
I am surprised that Ms Tolley did not explain all this to you as she runs a Support Group and the Contaminated Whole Blood UK Facebook page. I look forward to your response and corrections. Although you are using haemophilia facts, the word haemophilia does not appear once in your article!
I lost 2 family members, haemophiliacs to contaminated blood and am now a widow, hence my 30 year research into this scandal.
I look forward to your prompt response.
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”.