Jan Barlow gave evidence to the Infected Blood Inquiry but had previously ignored Grayson’s email and letter over the proposed scrapping of the Macfarlane Trust
(Image via Haemophilia Society)
When rumours began to grow in 2016 over proposed scrapping of the Macfarlane Trust, the author of this blog Carol Anne Grayson was deeply shocked. She had been given repeated reassurances as a member of the Joint Partnership Group that the Trust and monthly payments would be there as long as the last infected and affected beneficiary remained alive. The trust was set up to deliver financial and other support to haemophiliacs with an inherited clotting disorder that became infected with HIV through their factor concentrate treatment during the 1970s and 80s.
Due to her concerns the following email to my MP Nick Brown was sent to Keisha Hanchard at the Trust dated 19th February 2016 marked for the attention of Jan Barlow then (CEO)
PLEASE FORWARD TO JAN BARLOW AND TRUSTEES WITH THANKS
LETTER TO MY MP NICK BROWN RE MACFARLANE TRUST DEEDS
Dear Nick,
I am concerned the new consultation document in relation to Haemophiliacs with HIV and hepatitis C might interfere with the original Trust deeds. In 1991 haemophiliacs that were litigating including my late husband signed up to an ex-gratia payment presided over by Justice Ognall which included the provision of the MacFarlane Trust. See deeds below,
Macfarlane Deeds
“To relieve those persons… who are in need of assistance, or the needy spouses, parents, children, or other dependents of such persons, and the needy, spouses, parents, children, or other dependents of such persons who have died.”
Nick please could you ask the following question of the Department of Health, Jeremy Hunt and Jane Ellison
Can the Department of Health reassure haemophiliacs, their families and their MPs that no deeds pertaining to the MacFarlane Trust will be changed and any plan to reduce or drop payments for the categories of persons within the original deeds will be discussed in full with lawyers representing haemophiliacs?
Also how would any plans to amalgamate the MacFarlane with other Trusts affect the Deeds? When I raised this question at the time of Skipton, new trusts, funds had to be kept separate from the Macfarlane Trust?
With Thanks
Carol Anne Grayson (Widow)
To remind people what a deed is…
“a legal document that is signed and delivered, especially one regarding the ownership of property or legal rights”
Most beneficiaries and families would remain “needy” and in need of financial assistance should any financial support be pulled, so this is somewhat contradictory to the deeds. How would haemophiliacs and their families needs then be relieved and financial assistance to the existing level that they have come to rely upon then be met? How would they be relieved? This is so drastic it would surely need to be discussed with lawyers representing haemophiliacs as it goes against the original deeds. Spouses, widows, children parents are included in the deeds also. Peoples current outgoings, financial commitments which may be long term, like a mortgage are based on their current income… Surely these cuts will drive people into poverty which was not the intention of the deeds? Haemophiliacs at least need an opportunity to discuss this with lawyers so their needs can be represented to the Department of Health as the original agreement was a legal one… I did manage to track down one of the original lawyers although retired he is very much aware of what is going in and the importance of legal representation for haemophiliacs… we now need to see who takes over representing haemophiliacs and their families.
Please note also there are issues with the Guardian unfortunately misreporting haemophiliacs in a recent article as having had “compensation” cut which is of course incorrect as they never had compensation in the first place. This is being addressed separately. Guardian have issued a correction to me, but there was an error on the correction…. Guardian also incorrectly reported one person with hepatitis C as wrongly having HIV!
Kind Regards
Carol
On the 20th September 2017, Grayson then wrote a follow up letter to Barlow raising her concerns about the proposed scrapping of the Macfarlane Trust (contact details supplied) as follows,
Concerns over loss of Haemophiliacs “Special Status” and Amalgamation of 5 Trusts
Dear Jan Barlow, (CEO Macfarlane Trust)
I am writing further to my telephone conversation with Keisha regarding the special status of haemophiliacs and the forthcoming amalgamation of the MacFarlane Trust with other Trusts.
Signing of document
I am unable to sign the form regarding amalgamation of 5 Trusts right now as it would not be “informed consent” due to many legal questions remaining unanswered. I will explain further in this letter.
Allegedly illegal Consultation
Neither can I accept the widows’ £10,000 one off payment at this time as the longest standing campaign groups were EXCLUDED from the pre-Consultation meeting with the government mediator. This issue is still not resolved, the Consultation is deemed to be undemocratic, unethical and allegedly illegal because of this and due to amalgamation of the Trusts without consulting original solicitors for haemophiliacs. The amount is also a huge insult to a widow who saved the NHS £7.2 million in care costs looking after her husband over a long period according to a professional care assessor for the Archer Inquiry.
The terms the “worst treatment disaster in the history of the NHS” (Lord Winston) and “a criminal cover-up on an industrial scale” (Andy Burnham, former Secretary of State for Health) refer to the haemophilia community specifically NOT whole blood cases which have always been kept separate legally and must remain so. See following link…
Lord Morris of Manchester rose to ask Her Majesty’s Government what new help they are considering for people with haemophilia who were infected with hepatitis C by contaminated National Health Service blood products and for the dependants of those who have since died.
The noble Lord said: My Lords, the purpose of this debate—I speak as president of the Haemophilia Society—is to focus parliamentary and public attention on the now burning sense of injustice felt by a small and stricken community.
Ninety-five per cent of people with haemophilia treated before 1985—some 4,800 people—were infected with hepatitis C—HCV—by unclean NHS blood products. One in four of them was also infected with HIV. Over 800 have now died of AIDS-related illnesses from HIV infection and 212 have died from liver disease linked to HCV.
Yet, already twice stricken, the haemophilia community has now been dealt a cruel further blow. They are told by the Department of Health that blood products on which many rely crucially for their survival came from plasma donated by people who have since died of vCJD.
That briefly is the factual basis of what doctors of the highest distinction—including my noble friend Lord Winston, who is vice president of the Haemophilia Society—have described as the worst treatment disaster in the history of the National Health Service.
https://publications.parliament.uk/pa/ld200102/ldhansrd/vo020312/text/20312-25.htm
Please note the quote from Charles Gore Founder of the Hepatitis C Trust in his article.
“Too Little, Too Late” (Therapy Today, March 2012)
“Those who received whole blood were at some, but fairly low, risk because each unit would have come from just one donor. So someone like the late Anita Roddick, who had a transfusion following the birth of her youngest daughter in 1971, was unlucky to contract hepatitis C. However those who received blood products, such as clotting factors, were at very high risk because these products were made from the pooled blood of hundreds of donors. It only needed one of those donors to be infected to make the product unsafe. Added to that, whereas whole blood in the UK was collected from volunteer donors, much of the blood used to make blood products was sourced from commercial companies and these were mainly in the US, where donors were paid for blood and were often prisoners or intravenous drug users, among whom hepatitis C was very prevalent. Most at risk were haemophiliacs who required multiple treatments with clotting factor. Almost all – about 5,000 of them – were infected with hepatitis C, and about a quarter were also infected with HIV. Inevitably, many of them died. Could more have been done to prevent this? Certainly the risk of blood sourced from paid donors in the US was recognised at the time; the Secretary of State for Health also promised to make the UK self-sufficient in the blood needed for transfusions and treatments, but this was never implemented. Moreover, it wasn’t just haemophiliacs who received clotting factor or other blood products, and similar numbers were infected by whole blood because more people received blood transfusions, even though the risk was smaller. The haemophilia community was the worst affected group, however, and led the campaign for compensation.”
http://www.bacp.co.uk/docs/pdf/15272_therapy%20today%20march%202012.pdf
HIV litigation 1991
In 1991 the HIV litigation, out of court settlement was overseen by Justice Ognal with solicitors’ firms acting for the Department of Health and several firms acting for haemophiliacs. This seems to have been forgotten? The government is making changes to an agreement made under legal representation, so how can they be changed now without haemophiliacs having legal representation specifically for this issue? As you will see in this old Hansard it clearly refers to legal representation.”
Mr. Alfred Morris : To ask the Secretary of State for Health, pursuant to his written reply of 12 December, Official Report, columns 364- 65, to the hon. Member for Peckham (Ms. Harman), when he will publish further details of the proposed settlement of the dispute between the Government and people with haemophilia who were infected with the AIDS virus by contaminated blood products supplied by the national health service ; and if he will make a statement.
Mrs. Virginia Bottomley : The detailed provisions of the proposed settlement are under discussion with the lawyers representing the plaintiffs. It would be inappropriate to publish further details until all plaintiffs and the court have had an opportunity to consider the full terms of the settlementand to approve them.
Hansard 14th January 1991
https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-01-29/1991-01-14/Writtens-6.html
Mr. John Marshall : To ask the Secretary of State for Health what progress has been made with the settlement of the litigation by those haemophiliacs infected with HIV ; and if he will make a statement.
Mr. Waldegrave : I am pleased to be able to announce that a formal offer conveying the detailed terms of the settlement has now been made to the plaintiffs’ representatives. The new trust, which will administer the payments, the Macfarlane (Special Payments) (No. 2) Trust, is being set up today.
Payments can begin as soon as acceptances have been received from individual plaintiffs and the settlement has been approved by Mr. Justice Ognall. This should be within a few days.
Full details of the payments to be made under the settlement will be given once those details have been announced in open court.
Hansard 3rd May 1991
https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-05-03/Writtens-4.html
Litigants including my late husband signed a hepatitis waiver (now deemed to be illegal, written opinion given by a former Head of the Bar, a top QC) as it could not possibly be “informed consent” given that haemophiliacs were not told their hepatitis C status at that time or that it was a deadly virus and key evidence relating to both alleged negligence and chances of winning was withheld from them. There is a statement from a lawyer saying “I can no longer lie to my clients” which is deeply disturbing and there were allegedly serious lies on both sides which now need to be examined.
Regarding what haemophiliacs were told. They were informed by their solicitors that payments for them and their partners were “for life”.
They were also given a “special status” which separated them from whole blood cases as stated in Hansard by Virginia Bottomley (then health) and this cannot be changed retrospectively.
There were several reasons for this discussed in Hansard and in legal documents that made haemophiliacs different to whole blood and this is why they were never lumped together as one group but viewed as 2 distinct groups. Lord Archer of Sandwell recognized this as former Solicitor General as did the late Lord Morris of Manchester, Minister for Disabled as does Lord David Owen (former Health Minister who “strongly endorses” my research dissertation into contaminated blood as “by far the most serious and comprehensive study undertaken”.
The Haemophilia Society is ONLY legally responsible for bleeding disorders while the Hepatitis C Trust caters for whole blood cases.
Differences regarding haemophiliacs deemed a “special case” and whole blood cases. This has in fact STRENGTHENED over time as more evidence had come to light making haemophiliacs a distinct patient group.
Haemophilia is an hereditary condition therefore haemophiliacs were already disadvantaged in many ways, health compromised, education, insurance, employment, financial etc, therefore this was made far worse.
“The Government recognised the arguments forcefully put to us that HIV-infected haemophiliacs were a special case. I repeat that their lifelong condition of haemophilia—which had already adversely affected their health, social, employment, insurance, and mortgage prospects—was further exacerbated by the onset of HIV.”
Hansard 20th December 1991
http://hansard.millbanksystems.com/commons/1991/dec/20/infected-blood-transfusions
(This also applies to haemophiliacs with hepatitis C)
Often more than one family member was infected with HIV/HCV due to haemophilia running in families, brothers, uncles, cousins … plus some wives were infected. Some families had 5 and 6 family members infected with HIV and hepatitis B and C. This was catastrophic and actually led to families falling apart as government and the Haemophilia Society tried to divide the community by virus. Haemophiliacs are a distinct patient group.
Mr. Ashley : To ask the Secretary of State for Health how many of the haemophiliacs infected with the HIV virus who have received payments from his Department were related.
Mrs. Virginia Bottomley : Among the haemophiliacs infected with HIV, we understand that there are 65 pairs and six trios of brothers who are infected. We believe there may be a significant number of other cases where HIV-infected haemophiliacs are related, for example, grandfathers, grandsons, uncles and nephews, but these cannot be readily identified from the available information. In addition, there are a number of cases where the haemophiliac’s spouse or partner has become infected.
Hansard 27th Jun 1991
https://publications.parliament.uk/pa/cm199091/cmhansrd/1991-06-27/Writtens-4.html
Haemophiliacs were knowingly exposed to multiple viruses HIV, Hepatitis B and C (then later exposed to v CJD) highlighted in medical journals. This multiple infection meant there was an interaction of viruses and serious implications for treatment and impact on the liver.
Haemophiliacs were given imported plasma from the US and subjected to gross safety violations and given a 2nd class treatment from remunerated virally high-risk donors subjected to beatings and torture.
“Bloody Awful: How money and politics contaminated Arkansas’s prison plasma program”
https://www.arktimes.com/arkansas/bloody-awful/Content?oid=863387
It was known to medical professionals and government that haemophiliacs were likely to be infected with hepatitis from their first shot of imported US treatment (factor concentrates) due to pool size and sourcing from virally high-risk donors.
Dr Charles Rizza stated, “we recognised in the 70s and early 80s that all of the concentrates were infected with non-A, non-B hepatitis” (later called hepatitis C) and “factor VIII is still very impure it could be called a crude protein concentrate contaminated with Factor VIII” (Jad Adams, AIDS, The HIV Myth http://www.virusmyth.com/aids/books/jabmyth.htm
Haemophiliacs were re-infected over and over again and were repeatedly exposed to different genotypes.
“Frequent Reinfection and Reactivation of Hepatitis C Virus Genetypes in Multitransfused Hemophiliacs”
http://www.jstor.org/stable/30134630?seq=1#page_scan_tab_contents
Because haemophiliacs have a pre-existing and life -long clotting disorder. Hepatitis B and C has a strong impact on liver worsening bleeds as the liver deteriorates (clotting and liver, coagulation abnormalities in liver disease) Quote, “The decreased capacity of the liver to synthesize proteins is the main cause of decreased blood levels of clotting factors II, V, VII, IX, X and of antithrombin III in patients with liver disease”. Hematol Oncol Clin North Am (Summer 1977)
https://www.ncbi.nlm.nih.gov/pubmed/1333467
Haemophiliacs were a distinct study group for unethical experimentation, evaluation of HIV and HCV tests allegedly without their knowledge and permission before tests was officially introduced.
“Haemophiliacs duped into tests”
https://www.theguardian.com/society/2003/jan/21/medicineandhealth.publichealth
Haemophiliacs used as a distinct study group for “infectivity of treatment” (Oxford Haemophilia “cheaper than chimps letter” (Newsnight 2007)
Haemophiliacs used in Trials link to BBC Newsnight
https://bleedingdisorder.wordpress.com/tag/bbc/
Brains of haemophiliacs were taken without permission, (organ scandal).
“Families Fury over Missing Organ Scandal”
http://www.hartlepoolmail.co.uk/news/family-s-fury-over-missing-organ-scandal-1-990259/amp
Product liability not applied to Haemophilia cases
Haemophiliacs had separate and distinct legal cases from whole blood and could not use the Consumer Protection Act and product liability law like whole blood cases.
Although there was hope after whole blood cases were won, in practice product liability did not extend to haemophilia cases
“NHS faces 10m bill over infected blood” (whole blood)
Haemophilia Holocaust
The impact on the haemophilia community was so bad, it was referred to in several journals as a “haemophilia holocaust” in the US and this extended to the UK due to imported treatment.
“National Academy of Sciences convenes public hearing on HIV and blood supply”
https://www.ncbi.nlm.nih.gov/pubmed/11362355
Questions
Amalgamated Trust
How will the Special Status of haemophiliacs be upheld under an amalgamated Trust? There has been no discussion of this whatsoever.
Honeycombe Legacy Fund
Concerns have been raised to Diana Johnson MP regarding the future of the Honeycombe Foundation bequeathed to the MacFarlane Trust by a widow to help other widows whose husband was infected with HIV. How can that be legally transferred?
“Empowerment grants through the Honeycombe Legacy Fund (bereaved spouses/partners only)
• grants from the Honeycombe Legacy Fund for bereaved spouses/partners for personal development and to develop economic independence, eg academic development, skills training, driving lessons”
http://www.macfarlane.org.uk/support-for-beneficiaries.php
Reserves
What will happen to any reserves in the MacFarlane Trust? How can that be transferred to an amalgamated Trust?
Rights for life
Haemophiliacs and partners were informed by their legal representatives that they would be cared for financially for life, how will this be assured?
Can you reassure us that our rights under the 1991 HIV agreement between lawyers for government and lawyers for haemophiliacs will not be affected in any way under the proposed amalgamation of 5 Trusts and that funding will continue for haemophiliacs and their partners for life?
I am also concerned that the Scottish Consultation may be illegal?
There is no reference that I can see that haemophiliacs were assessed under “special case” but were in fact lumped together with whole blood cases, a completely different case. If so then this requires a serious legal challenge.
I look forward to your reply as a matter of urgency
With thanks
Yours sincerely
Carol Grayson (Haemophilia Widow)
Since then the Macfarlane Trust has been disbanded and the remainder of the funds transferred to the Terrence Higgins Trust, the UK’s leading HIV and Sexual Health Charity. Grayson will leave that for another day other than to say numerous member of the haemophilia community have raised concerns and written to complain over a number of isues than have arisen since the transfer.The Infected Blood Inquiry have repeately been asked to look into how the scrapping of Macfarlane Trust was allowed to take place for a trust that was supposed to be “for life” and whether the closure and transfer were legal?
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 