Haemophiliacs and their families have been tied to government Trusts and now EIBSS as if anchored with a ball and chain (Image Wikimedia Commons)
Back in September 2018, Sue Threakal the widow of Bob, a haemophiliac given contaminated blood wrote an article for the Huffington Post highlighting a batch of e-mails containing derogatory comments regarding registrants of the Macfarlane Trust set up to provide financial support to victims infected with HIV. In addition, many haemophiliacs were also infected with hepatitis viruses B and C and exposed to variant CJD.
Haemophilia is an inherited condition where the blood does not clot properly and much of the plasma used to treat patients was imported from paid prison and “skid-row” donors in the US deemed to be “high-risk” for transmitting viruses. As Richard Titmuss highlighted in his book, The Gift Relationship: From Human Blood to Social Policy published in 1970 (which directly compared the British volunteer blood donor system to the paid blood donor system in America), the increased safety risks were known about long before the government chose NOT to become self-sufficient in our own blood products and began buying in factor concentrate treatment from overseas around 1973.
The goverment has always denied victims proper compensation but did establish an ex-gratia payment scheme for HIV positive haemophiliacs in an out of court settlement in 1991.
In 1995, the Haemophilia Society began a campaign for financial support for haemophiliacs infected with hepatitis C but initially excluded those co-infected with hepatitis C and HIV suggesting that the Society, “simply wants the terms of reference of the Macfarlane trust to be extended to include those infected with hepatitis C”. Grayson challenged the extension of the Trust itself alleging that this would be illegal and a separate Trust would have to be established. Macfarlane Trust staff upon checking at the author’s request realized this would be illegal. Several years later the Skipton Fund was estsblished following an opinion that a controversial waiver/undertaking/contract in the 1991 HIV litigation not to take further legal action for hepatitis C (in the legal case of haemophiliac Peter Longstaff) could not be “informed consent”. Skipton provided some financial relief but still failed to address the differences in payment between haemophiliacs with HIV and those with hepatitis C and their families.
In recent times in another allegedly illegal move, the Trusts were scrapped without legal representation for those who came under the 1991 HIV legal settlement and Macfarlane Trust to see how this would impact upon their rights. The Trusts were eventually replaced by EIBSS (England Infected Blood Support Scheme) and its equivilent in other parts of the UK in a move that ensured the opinions of the longest standing campaigners went unheard. Activists of three decades that had collected much important evidence were deliberately excluded from a key meeting with a government appointed mediator to discuss the proposed transfer to a different scheme. The change over to EIBSS was allegedly undemocratic, unethical and illegal.
Over the years, haemophiliacs and their families have highlighted how they have often had to go cap in hand to Trusts with a begging bowl for financial help in the form of grants. A system described by many as paternalistic and one supporting misogyny. (It was years before Grayson became the first female to sit on the Joint Partnershp Group to highlight the viewpoint of partners and the bereaved.) Monthly allowances are means tested for some registrants and in the case of the bereaved not linked to the Consumer Price Index which means year by year they are worse off.
There has even been a serious case of embezzlement by a staff member at Skipton creating numerous false profiles in order to help himself to money meant for victims, for which he was later imprisoned. (This was after he had stolen from his previous place of employment.)
Relations between victims and Trust staff have at times been fraught with victims accusing some Trust staff of allegedly “lying” comments posted on the Haemophilia Society website and on one occasion this resulted in several insulting comments directed back at registrants. Threakal elaborated on this in her following Huff Post submission as follows,
A few years ago, a group of us were sent copies of a series of emails between trustees of one of these support groups (referring to the Macfarlane Trust). We were later asked to delete them from our hard drives, which we did. This followed the CEO of the group travelling hundreds of miles to apologise in person to the family of one victim for the emails’ content.
You see, in the exchanges, we, as a community of around 1,200 co-infected haemophiliacs and their families were referred to as ‘the great unwashed’. Two individuals – brothers, both co-infected, both now deceased – were referred to as the ‘Welsh Terrorists’. The new partner of one victim, whose marriage had broken down through stress, was described as his ‘squeeze’.
Let me tell you now that this community of people, thrown together by a common scandal, are not ‘the great unwashed’. This is a group that represents a complete cross-section of our society today. They are brave, dignified and strong, and to be treated this way is unforgivable. Nor were the two brothers terrorists, though their Welshness cannot be denied! No, they were gutsy, intelligent, men who worked with us for justice up until the day they both died. They were our friends and we loved and miss them. Nor is it acceptable to describe any new partner as a ‘squeeze’.
This author was sent the body of e-mails from a senior member of the Trust however as she was not part of the Tainted Blood group involved in the incident, Grayson was never asked to delete them. As a senior staff member pointed out,
“I had made personal comments about a few of our registrants that I would not have made to their face”
This followed an incident where Trust e-mails were allegedly hacked by unknown persons and concerns were raised over breaches of security. Insulting comments were initially denied by Macfarlane Trust staff to protect one another but later admitted and the following comment appeared,
“there is, clearly, a risk that the hacker could penetrate our system further and access the database or our financial systems – there is no evidence that this has happened so far” …”Personally I do not wish to initiate police action that might involve any of our registrants; the link between stress and damage to their health seems to be sufficiently strong that I would not recommend causing or adding to such stress.”
He goes on to say,
“I regret my part in causing this situation to arise”.
It is hoped the Infected Blood Inquiry will investigate the past role of the Trusts, relationships with victims and how they operated as well as the considerable differences in payments across the UK. There are also concerns that in some parts of the UK that current arrangements (bar Scotland) breach freedom of movement part of Human Rights Act and restricts independence of registrants. Trust e-mails also highlighted how staff were exploring how to end the Trusts looking at the possibility of providing lump sums payments in a “buy-out” and a legal opinion was sought. They also appeared unhappy with long-standing financial arrangements for registrants?
There is a certain irony regarding referring to registrants as “the great unwashed” as in the e-mail comment below,
“Good to hear from you but sorry that you are getting so much stick from “the great unwashed”.
As Threakal points out its a unforgiveable way to treat victims. Another way of looking at it, is if Trust staff recognize that registrants are too ill and depressed to get out of bed to even wash themselves, then why are victims being constantly reassessed by the DWP for ESA and PIP payments. They should be left alone, not re-traumatized further and be passported onto these benefits without the need for further assessments. Government can’t have it both ways!
The mood in the exchange of emails was for the most part downbeat with strained relations between the Trust and Haemophilia Society. A further comment reads,
I think we also need to take a hard look at ourselves from a public relations viewpoint. M has a very different operating style to his predecessor, J equally so and the fact that A and S D have nothing to lose by bad mouthing MFT leaves us vulnerable. We are, I think, starting to be seen as getting rid of the good staff – because the users and UKHS don’t know the real story. We need a new PR policy / strategy which is even more outgoing and accentuates all the positives of what we are doing. And, even within the rules, we need to be seen to be saying ‘yes’ twice as often as we say ‘no’.
The email ends with,
I don’t know when you are up for re-election but it would scare the hell out of me if the UKHS were preparing to have you replaced by C!
You are right, lets get on with the business case for added funding – that would be a good news story, even if we didn’t ultimately get it!
I will keep you posted on any feedback etc and meanwhile “don’t let the bastards get you down”.
It is a little unclear if “the bastards” referred to were the Haemophilia Society staff (the emails show there was friction there also and difficulties in communication) or Macfarlane Trust registrants!
Back to the present. Some may well be wishing all the offending e-mails had been destroyed back in 2008 but they are very useful in showing the problems that were arising and discontent all round. It is only by exploring the mistakes of the past and improving financial arrangements for the future that those haemophiliacs still surviving and bereaved partners like Sue Threakal can move forward with whats left of their lives. There are alao serious security issues to be addressed, that a government Trust containing highly sensitive personal information on persons living with HIV and hepatitis C can be both embezzled and hacked!
As the late Martin Harvey, Chief Executive wrote to Grayson on August 7th, 2006 in a public response provided for inclusion in my dissertation,
I am quite prepared to accept that while I may think the (Macfarlane) Trust has responded well within the means available, I concur fully with the long-held view that our registrants should not have to rely upon a charitable Trust (that by its own analysis) cannot meet all the demands placed upon it and the feeling of begging for assistance flows through.
All beneficiaries, not unreasonably, believe their case to be one the Trust should support. I can do no better than quote one of our member trustees who said that, “I (he) is running out of reasons to say no” within the policy framework difficult choices have to be made.”
Lord Archer of Sandwell recognized the difficulties of Trusts hence his recommendation in the Archer report for “compensation on a parity with Eire” to be paid to those infected and affected. This was blocked by government using a false narrative as highlighted in the winning of a 2010 Judicial Review by haemophiliac Andrew March with key evidence provided by Grayson and campaign colleague Colette Wintle. Again government chose to deny compensation once again by moving the goalposts and coming up with a different reason to that originally stated. Instead, what we have now is a very similar begging bowl scheme to the original Trusts just under a different name (EIBSS) which may not even be legal for former Macfarlane Trust registrants!
Comments from haemophiliacs and their families regarding their experience of both Macfarlane Trust and Skipton Fund and Martin Harvey’s complete e-mail can be read in Appendix B, Survey responses to a Questionnaire within Grayson’s 2006 dissertation sent out to haemophiliacs and their partners. See the following Haemophilia Society link,
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 is a former Registered Mental Nurse with a Masters in Gender Culture and Development (Distinction). 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”.