Some campaigners are claiming “anonymity” at the Infected Blood Inquiry but outing themselves on social media

(Image Grayson Protest Archives)

The Contaminated Blood scandal has traumatised those who were infected with HIV and hepatitis viruses through their haemophilia treatment and their affected family members. It is a person’s right to speak out on the impact on their lives publicly if they wish to do so and also for another person to chose to remain private. The Infected Blood Inquiry chaired by Sir Brian Langstaff and set up in 2018 to examine how haemophiliacs came to be infected through their factor concentrate treatment during the 1970s and 80s has respected that right for the most part from the opening stages.

A sharp lesson was learnt at the beginning of the Inquiry regarding respecting privacy and informed consent following a conference call with this author Carol Grayson and her campaign colleague Colette Wintle. The pair understood they would be talking to Sir Brian and that he and the secretary to the Inquiry would be the only ones participating. However, the Inquiry failed to notify them that several other persons had listened in on their long telephone conversation unannounced until the very end of the discussion. This revelation created distress and mistrust in Grayson and Wintle who had already learnt from life experience over decades of campaigning that when you trusted individuals or organisations related to the blood scandal, you would inevitably be let down with a few rare exceptions. As a result, it had become very difficult to trust anyone and the pair almost pulled out of any participation in the Inquiry altogether. Fortunately reassurances were given after a complaint was made and an apology given and they are now 4 years down the line of the Inquiry process.

The Inquiry has treated infected and affected with a great deal of care and consideration. Many witnesses had experienced years of discrimination, prejudice and abuse because of their infections. Therefore every effort has been made by Inquiry staff to protect those who wished to remain anonymous and keep their identity hidden which is how it should be. Warnings are read out with regard to protecting witnesses. There is a 3 minute delay in the live stream to the public in case someone slips up and mentions a name, or other identifying features. Sometimes witness sessions are held in private and not livestreamed at all.

However sadly, there are clearly some witnesses involved in the Inquiry that are “taking the piss”. Despite their “anonymous” status with the Inquiry, they are all over public social media pages making comments under their own names, sharing photographs of themselves, discussing the Inquiry, their evidence, Inquiry evidence, personal health and other issues for the whole world to see. Some even discuss their Inquiry “anonymity” in public. It has become a joke!

Some of these witnesses have behaved in controversial ways where usually it would be possible to enter into a debate and challenge certain viewpoints. However their so called “anonymity” makes it virtually impossible to have have a normal discussion for fear of anything leaking out regarding their status. Whilst other Inquiry participants are expected to walk on eggshells, they remain protected despite “outing” themselves time and time again. Their double standards regarding anonymity gives them an unfair advantage over others when it is perfectly obvious from their own information posted that they are also contaminated blood victims or their family members. The lawyers representing the “anonymous” know how they are behaving and their hypocrisy but they are also stuck. It is so tempting to name these individuals who have so little respect for the Inquiry process but then there would be repercussions for this author. A person is either anonymous or they are public, some however seem to want it all ways!

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”.