Giving assistance to haemophiliacs infected with HIV through contaminated
blood products and their families in the United Kingdom

The Macfarlane Trust (MFT) was set up in 1988 by the British Government to support people with haemophilia who were infected with HIV as a result of contaminated NHS blood products, and their spouses, parents, children and dependants. During the late 1970s and early 1980s more than 1,200 people with haemophilia were infected with HIV through their clotting factor treatment. A large proportion of people were also infected with Hepatitis C.

MFT currently receives approximately £2.2 million each year from the Department of Health. The majority of this funding is spent on discretionary regular payments to those who were infected ("primary beneficiaries") and to bereaved spouses/partners. There is also a small annual grants budget, and MFT is also able to refer beneficiaries for specialist benefits and money management/debt advice.

Arrangements for 2017/18

In July 2016 it was announced that a new single scheme administrator would be introduced to replace the existing organisations which provide support to people with HIV and Hepatitis C, including the Macfarlane Trust.  The process for appointing the new administrator was due to start in November 2016 but this has been delayed. 

The Department of Health has now advised us that we will continue to provide support to people from 1 April 2017 onwards until there is a new administrator in place.

Update on Scheme Reform – Northern Ireland 20 January 2017 

On 22 December 2016, the Health Minister in Northern Ireland, Michelle O’Neill, announced scheme reform on the same level as announced for England.  More information can be found at  The Alliance House organisations, including the Macfarlane Trust will now be writing to those infected in Northern Ireland, and bereaved spouses and partners, regarding the new payments that have been announced.

Changes to payments

The Skipton Fund, which makes payments to those with infected with Hepatitis C, and MFET, which makes payments to those infected with HIV, have been asked to implement some of the new and enhanced payments in England, Scotland and Wales during 2016/17.

For England and Wales this involves:

  • Making the new annual payment of £3,500 to those who have previously received only a Skipton Stage 1 lump sum payment
  • Making the increased annual payment to those with HIV and at Skipton Stage 2
  • Making the £10,000 lump sum payment to eligible bereaved spouses and partners

For Scotland this involves:

  • Making the additional lump sum payments to those at Skipton Stage 1
  • Making the increased annual payment to those with HIV and at Skipton Stage 2

The team at Alliance House, which the Skipton Fund and MFET are part of, have been asked to make these new and enhanced payments this year in addition to all existing work.  As the team is small, we cannot make all the payments simultaneously.  We will therefore be writing to the groups affected in stages, starting with those at Skipton Stage 1, followed by those with HIV and at Skipton Stage 2, and then the bereaved spouses/partners. 

The Skipton Fund and MFET will write to everyone affected by the changes individually, giving further information about payments and timescales, and any further information required.  We would ask that if you have any questions regarding the new payments that you wait for your letter before contacting the office.

Country of infection

Because different levels of payments are now in place for the four UK countries, the country in which a person was infected is important information.  When we write to everyone about the new or enhanced payments, we will confirm the country to which they have been allocated, based on the data we hold.  For applicants where there is reference to treatment in more than one country of the UK, we have been asked to assign the applicant to the country of residence at the time of their registration.

Once you have received your letter from us, if you believe you have not been allocated to the country in which your infection occurred, you can appeal the decision to the relevant government.  The following document provides further information on how to appeal: Appeals 

Payments for the bereaved

The Caxton Foundation, the Macfarlane Trust and the Eileen Trust will be writing to bereaved spouses and partners (of those who were infected in England and Wales) who are registered with the charities regarding the new payments.  Further information about the payments for England can be found here, and information about the payments for Wales here.

Winter fuel payments

In 2016/17 Winter fuel payments for primary beneficiaries where infection occurred in England, Scotland and Wales will be paid through the new increased payments being made by MFET and the Skipton Fund, following the reform by the respective governments.

For those primary beneficiaries in receipt of a discretionary top up payment, where infection occurred in Northern Ireland, MFT will make a winter payment in 2016/17 as in previous years and we will write to those who are eligible with more information.

The Macfarlane Trust    Alliance House    12 Caxton Street    London    SW1H 0QS
Registered Charity Number 298863    Information Commissioners Office Registration Number Z986535X