Northern Echo Haemophilia AIDS campaign article, 1987
(Source, Grayson Archives)
In 1986, the Northern Echo newspaper baded in the north-east of England, set up what became an awarded media campaign, the Fight For Justice Campaign working with the Haemophilia Society, MPs, campaigners and some members of the medical profession to gain recognition for the suffering of those with an inherited bleeding disorder infected with HIV. Much of the infection came through the use of imported US factor concentrate treatment manufactured from the pooled plasma collected from “high-risk” sources such as gay men, prisoners, prostitutes, drug users and skid -row donors, though some cases came from UK blood products. Some haemophiliacs went on to infect their partners not knowing their HIV status at that time. The campaign was for a public inquiry, compensation. truth, justice and accountability.
A Westminster Haemophilia debate on 16th November 1987 showed that government were at that time denying “negligence of public bodies” and were unwilling to pay out compensation to those infected especially through US blood products where the UK govenment were resisting the fact that they had the “first line of duty of care” to haemophiliacs regarding their treatment. They were looking instead at giving financial support through a trust which became known as the Macfarlane Trust. There was no Freedom of Information Act in those days to help access information and evidence and lawyers weren’t becessarily in the habit of sharing all the evidence they had obtained with their clients. The November 1987 debate did however also recognize what became known as the “Special Status” of haemophiliacs.
The FALSE narrative from government that long standing campaigners fought to change over the years was that the Contaminated Blood scandal was being portrayed as an “inadvertent infection” and an “unavoidable accident”. As haemophiliacs began to question and discover in the years that followed, this was clearly not the case. The following are excerpts from that debate.
3.30 pm
The Minister for Health
(Mr. Tony Newton)
With permission, Mr. Speaker, I wish to make a statement about haemophiliacs who have become infected with the AIDS virus as a result of treatment with infected blood products. I should explain that I am doing so in the unavoidable absence of my right hon. Friend the Secretary of State, who is unwell.
As the House knows, the position under successive Governments has been that, while compensation may be sought through the courts if there is a question of negligence, there is no state scheme of “no fault” compensation for those damaged by medical treatment.
The Haemophilia Society has, however, put to us a powerful case that the position of haemophiliacs is wholly exceptional and should be treated as such. Their employment prospects and insurance status were already affected by the haemophilia itself. The treatment that led to their infection was designed to help them to live as near a normal life as possible. The hereditary nature of haemophilia can, and in some cases does, mean that more than one member of the same family may be affected.
The Government, having considered all the circumstances, have concluded that it would be right to recognise the unique position of haemophiliacs infected with this virus. We therefore propose to make an ex-gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. It will be able to make payments to the affected individuals and families throughout the United Kingdom, and to do so with greater flexibility than could readily be achieved in any other way.
The House will wish to know that we have put this proposal to the society, which has welcomed it warmly. The society has asked for advice and assistance in administering the fund, which we have gladly agreed to arrange.
The grant of £10 million is being made from the reserve. When the full details of the grant and trust fund have been settled there will be an exchange of letters with the society. I will arrange for copies to be put in the Library.
I know that the whole House wishes to express its sympathy to the individuals and families who have been affected in this tragic way. I hope that the whole House will welcome this action to translate that sympathy into practical help.
Clare Short stated the following,
I welcome the Minister’s undertaking to review the total sum available. No recompense can be made for the harm done to these families by the Health Service because blood was imported from the United States of America when we should have relied upon our own and much better blood products.
Tony Newton highlighted,
Our present view is that the combination of circumstances affecting haemophiliacs infected by the AIDS virus, along the lines that I described in my statement in reporting what the Haemophilia Society said to us, makes theirs a unique and exceptional case, and we feel that it is right to treat it in that way.
At that time the Northern Echo was considered the most high profile and prolific media campaign in the country championing the rights of haemophiliacs infected with HIV of which some had already died of AIDS including Stephen Longstaff, age 20 the brother in law of Carol Grayson, author of this blog, a victim of alleged state negligence in 1986.
Hansard highlighted this,
Mr. Tim Devlin
(Stockton, South)
Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?
Mr. Newton replied,
I am conscious of the feeling about this in northern England, not least because, somewhat unexpectedly, about six or seven months ago I was interviewed on the subject by the Northern Echo. It will be open to the trust to make available money to the widows and other dependants of those who, unhappily, have died from this infection.
Grayson’s family (the Longstaffs) were very much part of the Northern Echo campaign, their goal being for a public inquiry to be set up and for compensation to be paid allowing their harrowing stories to be used to help gain urgently needed financial and other support for the haemophilia community.
(Stockton, South)
Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?
Mr. Newton
Baroness Cumberlege, then Parliamentary Under-Secretary of State, Department of Health is reported in Hansard 15th March 1995 which discussed the Macfarlane Trust, stating,
The McFarlane Trust was set up in November 1987 with government funding of £10 million and the purpose of making grants and weekly payments to HIV infected haemophilia patients and their families. The work of the fund is regularly reviewed. Its income was increased by a further £5 million in March 1993.
Fast forward decades to 2023 where the Macfarlane Trust that haemophiliacs were assured by lawyers representing them in the 1991 HIV litigation would be there “for life” and until the last infected and affected beneficiary remained alive, no longer exists.
In a highly controversial move, the Trust was scrapped in 2018 and the remainder of the monies transferred to the Terrence Higgins Trust (THT), the UK’s largest sexual health charity. This was done by excluding the longest standing haemophilia campaigners (Macfarlane Trust beneficiaries) from a meeting with a government mediator and by sending out questionnaires to elicit opinions that were received by some only AFTER the closing date for submission.
Since then, haemophiliacs have become increasingly disgruntled with THT finding themselves unable to access monies from the Trust and with their voices increasingly cancelled out as THT have appointed themselves as a voice of haemophiliacs whilst understanding very little of their decades long lived experience of HIV and extensive campaign history.
On 28th June 2021, the Ham and High reported on a letter sent to then THT CEO Ian Green from 5 campaign groups which criticised the charity “for its management of money meant to support victims of the scandal” and stated, “it has become quite clear that the involvement of this outside organisation would do more harm than good and is not wanted.” (See full article below)
A further letter was sent by the Haemophilia Society and several campaign groups to Richard Angell current CEO on 11th July 2023.
In addition to earlier concerns is the funding of Jason Evans, who set up Factor 8 Campaign Group in 2018. Evans is known to falsify dates of discovery of documents discovered by this author from the 1990s onwards passing them off as his discovery from 2017 and to rehash many of Grayson’s old press stories as if new. This does not help the fight for truth and justice and lets government off the hook where documents were presented to ministers two decades ago and they faiked to respond, ignoring and blocking the evidence. The letter reads as follows,
Dear Richard
Thank you for your letter of 21 June 2023 in which you make the offer to cover the expenses of a formal mediation process between THT and former Macfarlane Trust beneficiaries who are also members of the Haemophilia Society.
I have consulted with the following who are former MFT beneficiaries, or represent them:
Haemophilia Scotland, Haemophilia Northern Ireland, the Birchgrove Group, Contaminated Blood Campaign, Haemophilia Action UK, Haemosexual, Positive Women and Tainted Blood. Although they do not represent all former MFT beneficiaries, they do represent a majority.
The view of all these groups remains unchanged from those expressed in the letter to your predecessor Ian Green on 20 October 2021. In that letter the signatories requested that THT no longer represents that it speaks on their behalf on any platforms, including the Infected Blood Inquiry and the APPG for Haemophilia and Contaminated Blood.
HIV infection linked to people with bleeding disorders and their partners constitutes a unique narrative, which you acknowledge in your letter has been a point of tension during the years the MacFarlane Trust was in existence and since it was dissolved without community consultation.
The tensions with former MFT beneficiaries and the groups representing them were exacerbated with the announcement last year that research is being undertaken by Factor 8 being funded from THT former MFT monies, without any explanation of what research is being carried out and with what objectives. It is realised that it is for THT to determine where former MFT funds are directed but regretted that simple requests for information from MFT primary beneficiaries have been ignored.
There are also concerns about claims Factor 8 makes about the provenance of documents uncovered in some cases decades ago by Haemophilia Action UK and that their legal representatives were made aware of these concerns in 2018 and the narrative this offers to politicians of not knowing what was already publicly exposed.
Unfortunately, it has been reiterated to the Haemophilia Society that there is no trust from the former MFT beneficiaries in THT and the offer of formal mediation has been rejected as the groups consulted feel that their views will not be genuinely heard and that their voices will be again silenced and shut down.
Yours sincerely
Kate Burt
Chief Executive, the Haemophilia Society
And on behalf of
Clive Smith, Chair the Haemophilia Society
Bill Wright, Chair Haemophilia Scotland
Simon Hamilton, Chair Haemophilia Northern Ireland
The Birchgrove Group
Contaminated Blood Campaign
Haemophilia Action UK
Haemosexual
Positive Women
Tainted Blood
END
To date Angell has failed to respond.
On Twitter @PositiveWomanF8 unhappy at the lack of response tweeted,
@RichardAngell cannot be bothered to respond to former MFT registrants’ letter dated 11/07/23 SILENCE = CONTEMPT Legal teams @bloodinquiry represent us. Stop taking MFT funds to pay staff. Distribute to needy beneficiaries. TRUTH WILL OUT We are not CASHCOWS
In 2010, Grayson and her campaign colleague Colette Wintle finally succeeded in having the words “inadvertent infection” permanantly removed regarding the infection of haemophiliacs following a meeting with Anne Milton (then Department of Health) where key documents were shown and discussed.
The Newcastle Chronicle reported the words of Sir Brian Langstaff, Chair of the Infected Blood Inquiry on 5th April, 2023, in his interim report, he said,
“It is now accepted that wrongs have been done. The Government was absolutely right to accept this. My conclusion is that wrongs were done on individual, collective and systemic levels. Not only do the infections themselves and their consequences merit compensation, but so do the wrongs done by the way in which authority responded to what had happened.
“Accordingly, a compensation scheme must provide appropriate redress to all those who have been wronged. Time without redress is harm.“
The Prime Minister Rishi Sunak and other ministers are to give evidence to the Inquiry and be questioned in the coming week with Sir Brian’s final report due to be published in the Autumn.
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”
Carol Anne Grayson (Radical Sister) blog 