The Haemophilia Society archives

This collection is uncatalogued. The following is a temporary description which may change when detailed cataloguing takes place in the future.

Organisational records of The Haemophilia Society (THS) relating to the charity’s formation, development, and activities as well as material collated by THS, in particular in the course of its campaign activities on behalf of those affected by the contaminated blood scandal.

The archive includes:

• Minutes of THS Executive Committee meetings (1951-1995), Annual General meetings (1955-2007), Council meetings (1975-1996) and Trustee meetings (1996-2012)
• Minutes of other THS committees, including Member Services, Policy, Health Sub-Committee, Medical Advisory Panel, and Appeals Sub-Committee (1960s-2000s)
• Minutes of UK Haemophilia Centre Directors meetings (1972-1987)
• Minutes and papers of the All-Party Parliamentary Group on Haemophilia (2000-2010)
• Files relating to THS’ campaign activities on behalf of people with haemophilia affected by infected blood and blood products. Including correspondence; submissions to, and reports of, the Archer Inquiry and Scotland’s Penrose Inquiry; press cuttings; correspondence with MPs and the Department of Health; Hansard reports; campaign briefings; campaign photographs; and papers relating to the Contaminated Blood Bill (1970s-2010s)
• Files relating to contaminated blood litigation in the UK and internationally (1960s-2000s)
• Files relating to THS Scottish Development Project (1980s-2000s)
• Files relating to women and bleeding disorders (1980s-2010s)
• Press cuttings relating to THS’ activities, the contaminated blood scandal, Hepatitis, HIV and AIDS, Creutzfeldt-Jakob disease, and general news and information relevant to THS’ community (1950s-2000s)
• THS press releases (2000s-2010s)
• Subject files on topics such as haemophilia care, blood safety, co-infection, Hepatitis C and vCJD (1950s-2000s)
• Correspondence to and from the NHS, Department of Health, MPs, pharmaceutical companies, blood laboratories and services, the Macfarlane Trust and other relevant bodies (1970s-2000s)
• Correspondence and papers of Lord Alfred Morris of Manchester (former president of THS , 1999-2012)
• Files relating to local and regional THS groups (1950s-2000s)
• Files relating to grant-giving activities (2000s-2010s). These activities are also documented in Trustee minutes.
• Correspondence to and from THS members, including personal testimonies relating to haemophilia and the contaminated blood scandal.
• Reports, publications and information resources created by THS primarily re. haemophilia and other bleeding disorders, Hepatitis and HIV and AIDS (1950s-2010s)
• Collated reports and publications, not written by THS, relevant to its activities, e.g. by the Department of Health; pharmaceutical companies; self-published accounts of living with haemophilia; dissertations and theses including Carol Grayson’s 2007 thesis (1950s-2010s)
• Photographs of THS community events, fundraising activities, campaigns, staff and members, haemophilia centres, and haemophilia treatment (1980s-2000s)
• Occasional publications created by THS relating to HIV and AIDS including Haemofact factsheets (1980s) and HIV Treatment News (1990s)
• THS newsletters and magazines for members, including Haemophilia Quarterly, The Bulletin, and C Issues (1990s-2000s)
• THS Annual Reports and Reviews (1950-2008)
• Offair recordings, on VHS tape and audio cassette tapes, of news items and documentaries relating to haemophilia, the contaminated blood scandal, and HIV and AIDS (1980s-2000s)
• Conference recordings, on audio cassette tapes, relating to haemophilia (1980s)
• Organisational records on born-digital media (1990s-2000s)

A note on photocopies
There is a high proportion of photocopies in the archive. These have been accepted as they are often interspersed with original material and because it is not always known whether the originals still exist, either within THS' records or elsewhere. The UK government, for example, is known to have destroyed at least some records relevant to the contaminated blood scandal.

The Haemophilia Society is a UK-wide charity that represents, offers support to, and provides information for everyone affected by bleeding disorders. The Society has played a key role in advocating for the better care and treatment of bleeding disorders in the UK and in campaigning for justice for those affected by the contaminated blood scandal.

The Society's roots can be traced back to 1947, when two men with haemophilia, Bob White and Frank Smith, met in a hospital waiting room and realised that a community support group was needed to bring people with haemophilia together. Alongside others with a mutual interest, they set up The International Haemophilia Society (IHS). The Society was registered as a charity in 1950 and held its first meetings at the Hospital for Sick Children at Great Ormond Street.

By 1954, local groups had been set up all over the UK, and the IHS changed its name to The Haemophilia Society (THS).

The same year saw the start of groundbreaking steps in the care of people with haemophilia. THS began working with the Ministry of Health to create regional haemophilia centres and looked at tackling the numerous challenges that were faced by those with haemophilia – such as schooling, work, and accessing transport.

In 1964, THS was registered as an independent charity, and since then has been working UK-wide to support people with bleeding disorders.

In 1969 actor Richard Burton helped to raise funds and awareness when he pledged the proceeds from the royal premiere of his film, Where Eagles Dare, to an appeal in his name, donating the equivalent of over £60,000 today.

In more recent decades, the contaminated blood scandal has been a major part of THS' work, having had a massive impact on its community. The Society has campaigned for justice for the thousands of lives already lost, and for many more members and their families who are living with the daily legacy of pain, psychological damage and financial hardship caused by the scandal.

THS contributed to the Archer Inquiry (2007-2009), Scotland's Penrose Inquiry (2009-2015) and – after 30 years of campaigning for a public inquiry – the Infected Blood Inquiry (2018-2024). The Inquiry was an independent public statutory inquiry established to examine the circumstances in which men, women and children treated by National Health Services in the United Kingdom were given infected blood and infected blood products, in particular since 1970.

As part of the inquiry, THS’ own role in the contaminated blood scandal was closely scrutinised. Evidence from its archives was studied and former staff and trustees appeared before the inquiry to talk about the Society’s actions and advice during this period.

It is public knowledge that during the contaminated blood scandal, THS issued statements reassuring people with bleeding disorders that new factor treatments were safe and to continue using them. The THS issued this advice based on guidance from the Haemophilia Centre Directors (UKHCDO) and from the government. The Society has since accepted that its actions and statements at the time, while well intentioned and based on expert advice, have subsequently been shown to be damaging to the community and false. THS have apologised unreservedly for this in a statement by their Board of Trustees (published 27 March 2017).

In addition to the scrutiny of THS' past actions, the Society also advocated on behalf of its members and the wider community throughout the inquiry, to ensure that the process was as thorough and as far reaching as possible.

The Society is now focussed on navigating post-inquiry issues such as compensation and the need for better psychological support in England. It continues to act as a national advocate for all those affected by the scandal, working alongside key campaign groups, and as secretariat to Westminster's All-Party Parliamentary Group (APPG) on haemophilia and contaminated blood.

In addition to creating information resources and signposting support for those affected by bleeding disorders, THS also runs community support events, including for women and children; campaigns to raise awareness and improve care; advocates on behalf of its member; and communicates relevant news to its community.

Paraphrased from THS' website https://haemophilia.org.uk, accessed 03/09/2024.