The Hepatitis C Trust welcomes the start of the Infected Blood Inquiry

At the end of this month, the first public inquiry into the infected blood scandal will begin to hold public witness hearings. Having campaigned for a full-scale public inquiry into the scandal for decades, individuals, public bodies and charities alike will hopefully get the answers they are owed at last.

The Infected Blood Inquiry aims to investigate why blood products containing viruses such as hepatitis C and HIV were used to treat NHS patients before 1992. Due to a lack of blood from the UK, between the late 1970s and early 1990s thousands of people in need of blood transfusions were treated with blood from the United States and other countries. This blood had often been donated by people who were at high risk of having blood-borne viruses, such as injecting drug users and the prison population. On top of this, blood was pooled together in such a way that even if just one unit was infected, the whole vat would become contaminated.

Some of this blood was given to people who had been in accidents or women during childbirth, and also to haemophiliacs in the form of blood clotting products known as Factor VIII. Before donated blood began to be screened for blood-borne viruses in September 1991, it is estimated that 4,500 people with haemophilia were infected with hepatitis C, HIV and other blood-borne viruses. Among this group alone, over 2,000 have died. As well as the significant physical health implications, contaminated blood has had a severe impact on the lives of those who have been infected and on their families, affecting careers, relationships, financial stability, and mental health.

The Government has provided financial support for those affected in the form of various blood support schemes over the years. However, many people view this as insufficient and some have faced problems accessing the money. Recently, Su Gorman wrote in The Guardian about the shocking difficulties she had to overcome to access support from the English Infected Blood Support Scheme following the death of her husband, who had been infected with hepatitis C as a result of infected blood products on the NHS. The Chair of the Inquiry, Sir Brian Langstaff, last year called on the Government to take ‘decisive action’ to tackle the issues people were facing around financial compensation, which the Cabinet Office said it ‘will consider’.

The Haemophilia Society, Factor 8, and Tainted Blood campaigns, along with many others, have all been instrumental in fighting for this inquiry. The tenacity of these groups over the last thirty years should be celebrated as the first public witness hearings are heard in the coming weeks. These hearings will involve people infected and affected as a result of contaminated blood, as well as former Government Ministers, Civil Servants, and company executives, to understand how the scandal could have been allowed to happen.

The Chair of the Inquiry, Sir Brian Langstaff, designated The Hepatitis C Trust as a Core Participant in the Inquiry. This required us to make a short initial statement at the Preliminary Hearings in September last year, and to provide supporting evidence to the Inquiry team based on statistics and common facts drawn out by the numerous calls to our helpline over the years.

The Hepatitis C Trust is the national charity for people affected by this illness and the majority of its staff and volunteers have had the illness themselves.  Since 2004 we have provided a range of support services for all those infected and affected by this illness, in particular our national helpline, which provides a safe, confidential space for people to talk about their concerns. 

By sharing our own experiences it often encourages and enables people to open up and talk about what is often seen as a very stigmatising condition.  The practical information we can provide is reliable and up to date so we also act as a resource for professionals, the general public and others to find out more about an illness that is frequently misunderstood.

What we have noted over the years is the increasing number of people in their 50s, 60s and 70s, who are only getting diagnosed now with hepatitis C, but are then realising that their infection relates back to blood or blood products they received in the course of operations, childbirth and following accidents going back way before 1991 when blood started to be screened.

We are pleased to be able to contribute to the Infected Blood Inquiry and very relieved that all those infected and affected will finally have some answers and explanations of what went wrong which we hope will help provide them with some closure and healing.