Supporting former Macfarlane Trust beneficiaries

Following the closure of the Macfarlane Trust, we're supporting those living with and affected by HIV as a result of the Contaminated Blood Scandal.

This is inclusive of those who were directly infected with HIV because of blood products used by the National Health Service to treat people with haemophilia or other bleeding disorders, any individuals who were infected with HIV by those directly infected because of those blood products used to treat haemophilia or other bleeding disorders, plus their partners, parents, carers, children and dependents.

Presently, we're offering the following:

We provide practical information, emotional support and help with form filling on a number of matters such as regional Infected Blood Support Scheme applications, and signposting/referral into local services to meet your current needs. 

We can provide access to a free talking therapies service. Counselling support includes dealing with the trauma of past events and arising out of the current Infected Blood Public Inquiry. Initially you will be provided with up to 24 sessions of therapy.

We provide peer support sessions every fortnight. Peer support is a safe space where people can share their experience with others who understand in a constructive environment. There are separate sessions for the infected and affected parts of the community. These sessions are run by a skilled facilitator with experience of the Contaminated Blood Scandal.

Our telephone helpline THT Direct offers expert practical support for living with HIV including welfare and benefits advice. We offer a separate phone number just for the Macfarlane community. This is so you won’t have to explain to the person who answers your call about infected blood products and they can offer you the right advice and support. The number is 0808 802 0088. The call is free from all UK landlines and most major mobile networks, and it won’t appear on your telephone bill.

Our well-established and successful work and skills programme, available online, can assist with gaining new skills and help returning to work or finding a new direction after a period of ill-health.

My Community Forum is a platform that can connect you with the UK’s largest community network for people living with HIV.

To engage people with lived experience of the Contaminated Blood Scandal, we host Macfarlane Conversation events open to the whole community. They normally have a speaker.

We've previously heard from:

• Brian O’Mahony, Chief Executive of Irish Haemophilia Society,
• Wes Streeting MP, Shadow Health Secretary,
• Emma Dean, former Special Advisor at the Department for Health (under Matt Hancock), Cabinet Office (under Steve Barclay) and HM Treasury (under Nadhim Zahawi),
• Jason Evans, Founder of the campaign group Factor 8,
• Richard Angell, our current Chief Executive, plus his predecessor, Ian Green OBE.

The next event will be advertised soon. 

We're also engaging and working with our service users to develop services that are designed for and led by you. This is being done via the Service Panel.
 
In addition, the work we do relating to the Infected Blood Inquiry, Sir Robert Francis QC's independent study looking at options for a framework for compensation for the victims of the infected blood tragedy and the All-Party Parliamentary Group on Haemophilia and Contaminated Blood is done in collaboration with the Advocacy and Public Affairs Panel made up of former Macfarlane Trust beneficiaries.
 
If you'd like to join either panel or our quarterly Zoom conversation please contact us using the details below.

Terrence Higgins Trust is supporting those living with and affected by HIV as a result of the Contaminated Blood Scandal. During the 1970s and 1980s, blood products infected with HIV and hepatitis C were given to people living with haemophilia and other blood disorders. Thousands of lives were lost as a result and people continue to be impacted today.

Through our Last Chance for Justice series of blogs, we aim to amplify the experiences of a group of people who are less known but are very much part of UK HIV advocacy:

• Sue Threakall’s story – Shame turned us into liars
• Martin Beard’s story – You don't forget days like that
• David’s story – A life in two-year chunks
• Libby MacRae’s story – We could've all grown up together
• Beverley Tumelty’s story – We were all meant to be together

On 25 March 2021, the Government announced its intention to appoint an independent reviewer looking at a framework for compensation for those infected and affected as part of the Contaminated Blood Scandal. They appointed Sir Robert Francis QC to do the review. This is separate to the ongoing public inquiry into the scandal where people with haemophilia were infected with HIV and/or hepatitis in the 1970s and 80s.

We wrote to Sir Robert setting out our expectations in July 2021. We set out our belief that all the original Macfarlane community should be considered for compensation – without exception; that there should be space for a distinct voice for those living with HIV; that funding for legal support should be provided to 'core participants' throughout his study; and compensation has to be more than financial, for example, access to the best possible healthcare.

On 7 December 2021, we submitted our Principles for Fair Compensation to Sir Robert Francis QC, Chair of the Infected Blood Compensation Framework Study. We worked with the infected blood community to co-produce the principles and called on Sir Robert to use them to guide the conclusions he reaches on his framework, which looks at options for compensation in relation to infected blood products.

On 29 March 2022, we, along with the All Party Parliamentary Group and others, submitted a letter to the Paymaster General Michael Ellis calling for the urgent publication of the Compensation Framework Study. This was successful and was published before Sir Robert gave oral evidence to the Inquiry. In addition, we called on the Government to listen to voices of victims before responding to the study.

On 17 June 2022, our Chief Executive called on the Government to make an immediate commitment to paying compensation and make an interim payment to those infected with HIV as a result of the Contaminated Blood Scandal.

On 11 July 2022, we joined a cross-organisational delegation to 10 Downing Street calling on the Prime Minister to expedite an interim compensation payment for those infected and affected with HIV and HCV in the Contaminated Blood Scandal. On 17 August 2022, it was announced that some victims of the infected blood scandal would each receive an interim compensation payment of £100,000. This was paid in September and October 2022.

Over the summer we were proud to play our part alongside with other charities, the grassroots campaign groups and activists in getting the government to agree to the interim compensation payment made to some members of the Macfarlane Community. Like you, we appreciate that this is just a start.

In advance of World Aids Day 2022 we called on the Government to accept the moral case for compensation for the infected blood community, in addition to starting the registration process for those affected by this scandal and publishing a timetable for delivering compensation in partnership with those infected and affected. Elizabeth MacRae, whose family was affected by the Contaminated Blood Scandal, shared her history and view of the Infected Blood Inquiry at the Terrence Higgins Trust World Aids Day reception. The Government accepted the moral case for compensation on 15 December 2022.

On 6 March 2023, our Chief Executive called on the Government to confirm the CPI uplift to the Infected Blood Support Schemes. Although the information about this was released late the increased payment was made. On 20 March 2023, our Chief Executive wrote to the Paymaster General demanding that the Government keep to the then Health Secretary Rt Hon Matt Hancock MPs commitment given at The Infected Blood Inquiry that the infected blood support schemes would be guaranteed for life.
 
On 6 April 2023, the Chair of The Infected Blood Inquiry, Sir Brian Langstaff took the unprecedented step of issuing his second interim report which contained his complete recommendations on compensation. Our Chief Executive backed many of his recommendations including that for an interim compensation payment in respect of the deaths as yet unrecognised and to have the compensation scheme in place for the end of the year.  

On 17 May 2023, along with other campaigners, our Chief Executive wrote to the Chair of The Infected Blood Inquiry requesting that members of the Government were called to give evidence to the inquiry as the Government's work on compensation appeared to be stalling. The Prime Minister, Chancellor, Leader of the House of Commons and Paymaster General were called to give evidence at the end of July.

The Macfarlane Community shouldn’t have to wait until the Inquiry reports before receiving a response from the Government to Sir Robert Francis’s report. Nor should the Macfarlane Community have to wait for the process of building a compensation framework to start or for the verification and registering of parents, children and others who may fall under the scope of the compensation offer to commence.

The work continues.

If you or a loved one were a beneficiary of The Macfarlane Trust, please contact Paul on 07552 762 474 or email us at [email protected].