Late Friday afternoon on the 28th January 2022, core participants of the Infected Blood Inquiry which was set up in 2018 and is chaired by Sir Brian Langstaff received a notification via the Inquiry titled, Update on Sir Robert Francis compensation framework. This was a publication from the Cabinet Office and the Rt Hon Michael Ellis QC MP and highlighted that Francis had “published the notes of the six meetings he held in 2021 with groups of people infected and affected, and one meeting with legal representatives” see following link,
On reading the report, to say the author of this post was gobsmacked would be an understatement. It was immediately glaringly obvious that the Conference Call telephone meeting Carol Grayson and Colette Wintle both long standing haemophilia campaigners of over 3 decades held on the 10th December 2021 with Francis was not recorded in the update. The meeting was scheduled for 1 hour and was extended to around 1 hour 40 minutes with David Kirkham (Cabinet Office) also in attendance. However, the contributions of other groups (who appeared on the scene decades AFTER Grayson and Wintle began their activism) and newer groups’ proposals for a compensation scheme for those infected and affected by Contaminated Blood were recorded in some detail.
Following on from this revelation, it soon became apparent from talking to the Haemophilia Society, a national charity that represents those with inherited bleeding disorders whose lives were largely destroyed by what Lord Winston described as “the worst medical treatment disaster in the history of the NHS” were not included either. They were “dismayed” at this development. Haemophiliacs constitute a “distinct patient group” designated a “Special Status” by Virginia Bottomley at the time of the HIV litigation in 1991. They were infected with HIV and hepatitis viruses during the 1970s and 80s from factor concentrate treatment used to provide the missing clotting factors injected into their veins. Much of this treatment was imported from the US and made from huge plasma pools of up to 400,000 “high-risk” paid donors and violated virtually all of the safety rules of the day.
Grayson and Wintle then discovered that the Hepatitis C Trust that represent many victims infected by whole blood transfusions were also not included in the Cabinet Office update. In addition, they also learnt that at least 2 other long standing campaigners representing the haemophilia community and a further group representing non haemophiliacs that held their own separate meetings with Francis were not documented in the report either. So with the Grayson and Wintle meeting, it appears that 6 meetings are missing from the report, perhaps more?
It is important to note that it would have been inappropriate for Grayson and Wintle to attend meetings directly with other campaign groups due to a “conflict of interest” with some participants regarding alleged plagiarism of Grayson’s research and their fight to also ensure that the Special Status granted to haemophiliacs continues to be upheld. The Special Status criteria also extends to haemophiliacs with hepatitis C as well as HIV. As a result of these issues, Sir Brian Langstaff allowed the pair to be represented separately by Leeds firm, Milners and QC Sam Stein instead of by one of the four original legal firms appointed to the Inquiry.
For the two activists, exclusion of their comments and proposals on compensation in the Francis update echoes a long pattern of successive governments excluding long standing campaigners from key meetings and failing to minute the content over a substantial time period. The recent omissions are at best highly insensitive, at worst a continuation of the appalling “divide and conquer” tactics used over decades by senior civil servants and ministers dividing those infected by virus and pitting one haemophilia group against another.
This unethical behaviour has been catastrophic to the community causing splits within families where often more than one member lives with a bleeding disorder and is infected and affected. It has divided a group of patients who because of their condition and time spent in hospitals together with bleeds got to know each other very well. Haemophiliacs were traditionally, a tightly bound community in many ways who lives have been intertwined from the cradle to the grave. They boarded at special schools together which catered for their disabilities such as Lord Mayor Treloar in Hampshire, spent holidays and leisure time with one another in Haemophilia Society caravans, attended each others weddings and tragically said goodbye to their friends in each others company at the many funerals held for those who died as a result of their infections.
The following is one example of earlier exclusion where some haemophilia campaigners were treated differently to another….
Not long before the Infected Blood Inquiry was set up, long standing haemophilia campaigners were deliberately excluded from a key meeting with a government mediator to discuss the scrapping of the Macfarlane Trust and Skipton Fund along with other trusts. The government LIED saying all groups had been included in discussions and had been given an opportunity to comment. The reality was the exact opposite. When Grayson did a Freedom of Information request, her group Haemophilia Action UK (formerly Haemophilia North set up in 1994 and well known to government) was omitted from the official list of campaign groups. Other groups more recently formed were on the list. Then, Grayson and Wintle failed to receive a questionnaire devised to elicit opinions on getting rid of the Trusts until it was far too late to respond.
The irony was, Grayson, was the first female to represent partners (later widows) on the Macfarlane Trust Joint Partnership Group. She, Wintle and their friend the late Peter Mossman who founded the Manor House Group in the same year were never given an opportunity to raise concerns or objections regarding the obliteration of these Trusts. They have since taken their concerns to the Infected Blood Inquiry as to whether this action was even legal. Grayson had attended a meeting at the Macfarlane Trust years earlier where she was reassured that the Trust would remain for as long as the last infected and affected beneficiary remained alive. What happened to that commitment? Lawyers who represented haemophiliacs in the HIV litigation which led to the setting up of the Macfarlane Trust were never informed either that it was being closed down so were unable to advise their former clients of their rights if so required.
Even at the beginning of the Contaminated Blood Inquiry there was uproar at another exclusion when Catherine Nalty, Deputy Secretary to the Infected Blood Inquiry, took it upon herself to organize a meeting with then Health Minister Jackie Doyle-Price again leaving out the longest standing campaigners. She also allegedly breached confidentiality by putting two separate groups together in the same meeting whose cases were not comparable and whose infections were acquired through entirely different treatments. Grayson and Wintle have since refused to have any dealings with her due to a serious breakdown of trust.
So why do government and their cronies leave out long standing campaigners or fail to document and minute the content of meetings that have taken place including those with ministers?
Well one answer is this… The activists that have been around for decades know their Contaminated Blood history well, they have accumulated much valuable lived experience, have carried out their own awarded research into key issues, some have even worked in the field as HIV emerged and nursed those with blood borne viruses in hospital settings as well as caring for loved ones that were infected. They have sat on Trust groups, have files piled high to the ceiling of letters to government and the dismissive, dishonest and inadequate replies, discovered copies of thousands of blood policy documents government “inadvertently” destroyed, have participated in both litigation for their infections here and in the US and taken government to court in Judicial Reviews. In other words, they are knowledgeable, not naive and won’t have the wool pulled over their eyes by unscrupulous officials. That poses a potential threat to government who would rather sweep away their mistakes and alleged negligence under the carpet as indeed they have done for decades.
Back to Sir Robert Francis and current day concerns. Milners solicitors, the legal firm representing Grayson and Wintle were instructed to contact David Kirkham to express their discontent at the update exclusions and await to see whether details of their meeting and the content will now be included on the public record, transparency is essential.
It is important that ALL groups are treated EQUALLY. We expect the Haemophilia Society and other excluded groups will also be making representation if they have not done so already. The latest CEO, Kate Burt has shown herself to be a fast learner with regard to haemophilia history and has already gone a lot further in supporting the haemophilia community than many of her predecessors. Trustees such as Clive Smith, a haemophiliac with a legal background are now making important written contributions in the fight for justice for haemophiliacs.
Grayson and Wintle have long been public as campaigners, They put their heads above the parapet years ago facing the discrimination associated with AIDS and hepatitis and took the flak for those too afraid to speak up. Its not an issue for them that the general content of their meeting is made public, whether their names are included or kept confidential, they expect to be on the public record and given the same consideration and respect as other campaigners.
New campaigners have enthusiasm and determination no doubt which is to be applauded but much of their work has been rehashing old evidence by sending hundreds of FOIs to elicit evidence that original campaigners discovered. During her research, Grayson (whose work was awarded) ensured copies of many important government documents were placed in the public domain years ago. She organized for files to be placed on a Department of Health website and these were then transferred to the National Archives at Kew for others to access along with the thousands already saved by Grayson and the late Sir Patrick Jenkin who assisted her.
Long standing campaigners have been fighting for years, long before the Freedom of Information Act came into being, before the internet, emails, search engines and websites were a daily essential and before social media groups that has now made contact between campaigners so easy in locating one another. They ran awarded media campaigns from their own funds, not relying on others and without the special services of any London based Public Relations companies, it was all done through exhausting hard work. Government of course are well aware of this and would much rather deal with those that don’t have the extensive background when it comes to important Contaminated Blood issues, its called “damage limitation”. They will no doubt be looking for the cheapest possible options for future compensation as they did with previous “ex-gratia” payments. The “new kids on the block” are unfortunately far easier to manipulate than the older generation of campaigners, long toughened up by their years of painful experience, loss and hardship who will not be taken for a ride!
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”.