Haemophiliac Peter Longstaff (deceased) who received regular monthly payments from the Macfarlane Trust and wife Carol Anne Grayson who now receives regular monthly payments as a bereaved widow from EIBSS. (Image Grayson /Journal Archives) The following Freedom of Information...
Haemophiliac Peter Longstaff (deceased) who received regular monthly payments from the Macfarlane Trust and wife Carol Anne Grayson who now receives regular monthly payments as a bereaved widow from EIBSS.
(Image Grayson /Journal Archives)
The following Freedom of Information request has been submitted today (25th August, 2023) to the Department of Health and Social Care
To whom it may concern
Contaminated Blood/Haemophilia HIV monthly payments “for life”
I am writing with regard to haemophiliacs infected with HIV through contaminated blood products, their infected partners and infected and affected bereaved partners who were registered with the Macfarlane Trust. For many years they have received regular monthly payments. These are now paid through the English Infected Blood Support Scheme (EIBSS) since the Macfarlane Trust was scrapped.
Some years ago, as a committed member of the Macfarlane Trust Joint Partnership Group, following a meeting with the Dept of Health, myself and other beneficiaries were informed in person at one of these meetings that,
“the regular monthly payments will continue until the last infected and affected person remains alive.”
This gave huge reassurance to concerned registrants that had feared they might stop and I conveyed this to my legal team of that time.
As part of an MFT newsletter sent to registrants, (which I have in my files at home, also submitted to my current lawyers) the following was stated by Martin Harvey, CEO,
“Part of the restructuring process arising from the Long Term Review includes addressing the current rigid system that surrounds regular payments. From the outset I want to make sure the following message gets through, regarding the rumour suggesting the Trust is going to cut or cut out regular payments. This information is incorrect and just not true, so I hope that is now clear.”
The commitment to regular monthly payments “for life” was repeated over the years to registrants on the schemes both infected and affected.
The scrapping of the Macfarlane Trust and transfer to EIBSS in 2018 has caused huge anxiety in that registrants, many in poor physical health and suffering from depression and PTSD fear they might be betrayed once again by government and this commitment given to those with HIV, their infected partners and infected and affected bereaved partners that monthly payments would continue “for life” would be reneged upon. What did not help matters was that the most committed registrants that had given so much time and energy to contributing to the Joint Partnership Group were deliberately left out of the meeting with Gerard Hennessy, the government appointed mediator to discuss registrants concerns over the scrapping of Macfarlane and 4 other trusts. Nor were they sent questionnaires to elicit their opinions on the move until AFTER the closing date for submissions. This flew in the face of government statements that all registrants, relevant persons had been consulted and caused great hurt and distress to those haemophiliacs and their families that were cancelled out.
Under Freedom of Information, I ask the government what discussions and action has been taken by government officials regarding ensuring regular monthly payments for infected and affected formerly under the Macfarlane Trust now EIBSS continue “for life”? What action does the government intend to take to write to former Macfarlane Trust registrants through EIBBS as a matter of urgency to reassure sick and dying haemophiliacs, infected partners and infected and affected bereaved partners that this commitment will be fully upheld as promised? Will government ensure that this commitment is also equally extended to haemophiliacs, their infected partners and infected and affected bereaved partners receiving monthly payments for hepatitis C through EIBSS after receiving contaminated blood products and that they also receive written notification to reassure them monthly payments are for life?A copy of this letter will be sent to Sir Brian Langstaff, Chair of the Infected Blood Inquiry, who is very much aware of the importance of keeping these monthly payments “for life” as part of lawyers submissions representing core participants and which he was urged to adopt as one of his recommendations. Further copies will be sent to the Haemophilia Society who also fully support this, my legal team, fellow campaigners and my MP Nick Brown.
I look forward to your response.
With thanks
Yours sincerely
Carol Anne Grayson
Contact details supplied
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”.