There have been several questions asked of The Haemophilia Society and we would like to address some of these.
The Society does receive funding from a range of organisations and like many charities working in the healthcare sector, including haemophilia societies across the UK and Europe, some of that funding comes from pharmaceutical companies. This funding helps support projects such as the Newly Diagnosed Weekends, Talking Red and the Youth Ambassador projects.
Without this funding, it would be difficult for us to run many of these programmes which we feel are important to support our members. It is made clear which pharmaceutical companies have supported the programmes we deliver.
The Haemophilia Society receives no government funding currently. The Archer inquiry report included a recommendation that the Government should ‘secure the future of the UK Haemophilia Society by adequate funding’. As a result, the Department of Health provided a grant of £100,000 per year for 5 years finishing in 2013/14 to help us provide services to our members. We no longer receive any Government grants.
The Haemophilia Society has apologised publicly for any actions which contributed to the contaminated blood scandal in the past and has posted a written statement to that effect in March 2017 which is available on our website.
The Haemophilia Society accepts and welcomes scrutiny of all past events. Many of the trustees of the organisation at the time lost their lives or had family directly affected by this tragedy and it is in the best interests of everyone that the truth is uncovered.
The Haemophilia Society believes it has a responsibility to support its members and the wider community affected by the contaminated blood scandal throughout the inquiry and we aim to consult with our members to ensure we do this to the best of our ability. We accept that not everyone wants to be represented by us during the inquiry and we respect that decision, we hope that does not impact on people’s choice to remain members. We are the only UK wide charity here to support the bleeding disorder community through a range of events, activities and advocacy services and hope that people will feel they can still access these services.
Debra Morgan joined The Haemophilia Society as our public inquiry lead in December 2017. Debra has previously worked in the pharmaceutical industry for over twenty years for a range of pharmaceutical companies in a variety of roles, none of these companies supplied plasma products or blood products. Her experience working for the pharmaceutical industry brings a working knowledge of the interactions between the pharmaceutical industry and patient organisations which we believe will be valuable in the upcoming inquiry.
A number of our members have contacted us since the inquiry was launched asking us what to do with any evidence they hold. We had advised them to keep it safe but suggested if they wished they could share it with us to assist us in preparing for the inquiry. This productive engagement has been helpful as we prepare to engaging with the upcoming discussions on the terms of reference for the public inquiry.
In our latest email to members we outlined this process and created a new email address firstname.lastname@example.org for members to contact us with questions or to share information that may assist with our engagement in the inquiry.
We have been informed that clients of Collins solicitors have been contacted to advise them not to provide any evidence to The Haemophilia Society. If anyone is concerned that privilege might apply to evidence they hold they can instead submit it directly to the inquiry or via other legal representatives.
However, many of our members have looked to us for guidance in relation to evidence they hold. So for clarity, The Haemophilia Society intend to provide all information they hold to the inquiry. If members are happy to share evidence with us, we will ensure it is submitted to the inquiry.
We have yet to appoint a legal representative but, they would also need to have access our archives and other information we hold, which we are therefore seeking to digitise. Any legal representative would need to have a license to practice in the UK and privilege would apply as normal in relation to them and their clients.