Contaminated Blood: Haemophilia Action UK initial response to Sir Robert Francis compensation framework recommendations and a meeting with Yvette Cooper 2002

Haemophilia Action UK campaigners march down Downing Street, left the late Ollie Carruthers, Carol Grayson, the late Peter Longstaff, independent campaigner Colette Wintle and her then MP Archie Norman
(Image via Colette Wintle early 2000s)

I note the release of the Sir Robert Francis Report looking at a compensation framework for victims of the Contaminated Blood scandal. I thank those involved but urge caution. Some long standing campaigners have yet to give evidence to the Infected Blood Inquiry and that is our focus right now with our legal team at Milners and with Sam Stein our QC. I continue to allege negligence and that the case for compensation goes way beyond a “moral argument”. It is also concerning that in the run up to the report, Sir Robert Francis failed to document the proposals of some activists in meetings held with him, including my own phone conference with fellow campaigner Colette Wintle, fortunately campaigners document everything.

The bottom line is that government must pay compensation for each virus, hepatitis B, C, HIV and any others and adequately compensate infected and affected and the estate of the bereaved. Government must also recognize the repeated REINFECTION of haemophiliacs with multiple deadly viruses each time they injected US factor concentrates manufactured using plasma donations from the highest risk sources. American plasma pools could reach as high as 400,000 paid donors compared to around 25,000 volunteer donors in the UK. Compensation is not a buy one get one free supermarket deal of infections but a recognition of loss and cumulative harm from each virus addressing the needs of each individual and the impact on loved ones.

Haemophiliacs were also exposed to v CJD and they and their families have lived with the anguish of not knowing for decades if they are incubating the prion disease because there is no test available to date.

This week is an important week at the Inquiry as we will be hearing how government failed to respond to key evidence presented in face to face meetings between haemophilia campaigners and ministers in the early 2000s ignoring calls for a public inquiry even as many haemophiliacs lay sick and dying. It is clear activists working jointly with the Newcastle Journal and Chronicle “Bad Blood” campaign were a thorn in the side of government. We now know this from civil servants own comments behind the scenes only recently seen and the impact we were having which led to government making considerable efforts to block proper compensation for victims of the Contaminated Blood scandal for another 2 decades!

Issues discussed at a meeting with Yvette Cooper at Westminster 15th May 2002 included as follows:-

Lord David Owen’s self sufficiency arguement, his financial commitment and concerns over his missing documents.

The Dr J Garrot Allen letter, (1975) warning letter (from the World in Action documentary) regarding the hepatitis risk from using US paid skid -row and prison donors.

The ethics of treatment and the right to “informed consent”, haemophiliacs as guinea pigs, experimentation.

Not adequately informing patients of risks from factor concentrate treatment.

The state of BPL (1979 Inspectorate’s report) and safety concerns and the state of the building.

The use of “hepatitis rich” gay donors in the US, gay donor ads shown.

Arkansas prison plasma collection, information/evidence/photos shown from the sister of a US prison plasma donor, safety violations.

Yvette Cooper working on the Bill Clinton election campaign to the White House.

The Dr Spence Galbraith, (9th May,1983) warning letter to government to remove US treatment from the shelves in the UK due to the risk of AIDS.

Christine Lee policy not to discuss risks with patients mid 1980s.

Use of the safer cryoprecipitate compared to pooled plasma.

Testing for HIV/HCV without permission and with holding test results.

Stigma surround haemophilia and hepatitis C, that of HIV was already well known.

Rise in HCV death figures, misreporting.

The hepatitis waiver in the HIV litigation, (Peter Longstaff’s legal case).

The increased risk of viruses with higher pool sizes.

Conflict of interest with the Haemophilia Society due to funding from pharmaceutical companies.

The importance of all haemophiliacs being offered the safer recombinant synthetic treatment not only children.

Pictures shown of Manor House Group member bloated with hepatitis C.

Consumer Protection Act.

Peter Longstaff’s treatment strike, refusing human plasma, Judicial Review case for Recombinant.

Use of paid donors Henan, China scandal.

European Directive, to move away from using paid donors on the grounds of safety.

The need for a public inquiry.

Proper compensation.

The meeting was minuted by Ollie Carruthers for Haemophilia Action UK as we learnt from previous meetings with government, they are often fail to provide minutes. We shared these with the Manor House Group that attended the meeting as well as Haemophilia Action UK and the minutes have been presented to the Infected Blood Inquiry.

It is important to note that far from these issues being “new” as highlighted in recent media by certain campaigners that seem intent on claiming the above as their own work without referencing the research of long standing campaigners, many of the same issues were presented in the mid 1990s and in an earlier face to face meeting Colette Wintle and I had with Lord Philip Hunt as well as in countless letters, radio, TV news, documentaries and old newspapers. Both the Hunt and Cooper meetings were attended by Charles Lister who will give evidence this week at the Infected Blood Inquiry, MPs were also present.

Sir Robert Francis will present his compensation report shortly in person to Sir Brian Langstaff, Chair of the Infected Blood Inquiry. The recommendations could be accepted in full, partly accepted or rejected altogether, that remains to be seen. Sir Brian will release his report once all key witnesses are heard and he has compiled his own findings.

Carol Grayson (Haemophilia Action UK)

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”.

About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency http://www.esrc.ac.uk/ESRCInfoCentre/PO/experts/Health_and_Wellbeing.aspx Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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