The Infected blood inquiry
This section contains information on the Infected Blood Inquiry and the history of the contaminated blood scandal.
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What is the Infected Blood Inquiry?
The Infected Blood Inquiry was established to examine the circumstances in which patients treated by the NHS between 1970 and the early 1990s received infected blood and blood products.
At least 2,400 people died after contracting HIV or hepatitis C as a result of the infected blood and at least 26,800 people became severely ill. This is known as the contaminated blood scandal.
The government’s decision to investigate what happened followed years of campaigning by those affected by the scandal.
The inquiry is chaired by Sir Brian Langstaff, who is supported by a team of legal professionals, investigators and civil servants.
The inquiry began on 2 July 2018. The scope of the inquiry can be read in the terms of reference on the Infected Blood Inquiry website.
So far, the Inquiry has examined millions of pieces of written evidence and heard oral evidence from dozens of witnesses. The witnesses include those who were infected, their families, former Health Secretaries, healthcare professionals and others who can offer insight into the scandal and its ongoing impact.
The inquiry is expected to publish its final report in Spring 2024.
In 2022, on the recommendation of Sir Brian Langstaff, the government committed to pay interim compensation of £100,000 to those who received infected blood or to their bereaved partners.
An Interim Report was published in Spring 2023. This report recommended that a compensation scheme should be set up immediately and begin its work this year. Sir Brian also recommended that parents and children of infected blood victims should receive compensation.
The UK Government has since stated that it would not be announcing its position until after the publication of the Inquiry’s final report.
The history of the contaminated blood scandal
Between 1970 and the early 1990s, an estimated 26,800 people in the UK were given contaminated blood transfusions and blood products infected with hepatitis C or HIV.
People with haemophilia, a condition that affects the blood’s ability to clot, were particularly affected. This was because they regularly received blood products as part of their treatment, most notably, a product called factor concentrate.
Factor concentrate was produced by combining human blood plasma from up to 40,000 donors and concentrating it to extract the required clotting factor. Just one contaminated sample could infect the entire batch.
Because of donation shortages in the UK, the NHS sourced around 50% of its supply of factor concentrate from the USA. In the USA, donors were paid for giving blood. Those who donated blood were often from high-risk groups for hepatitis C or HIV. At that time, blood donations were not screened for these viruses.
The use of factor concentrate was controversial from the beginning, with some experts calling its use dangerous. The World Health Organization (WHO) had also warned against importing blood from countries with a high prevalence of hepatitis, such as the USA.
Blood transfusions, routinely used following accidents, complications in childbirth or as part of other medical treatment, also put people at risk of contracting blood-borne viruses.
In 1975 the UK government announced that funds had been allocated to ensure the UK became self-sufficient in blood products, but this failed to materialise.
In 1982 the first warning of the danger of contracting HIV/AIDS from contaminated blood was published. The following year, The Lancet and WHO stated that people with haemophilia should be warned of the risks of using blood products.
These warnings never reached those who received blood products or transfusions, with the UK government frequently reassuring people with bleeding disorders that factor treatments were safe.
In 1986, blood donations began to be tested for the HIV virus. Five years later, testing for hepatitis C was also introduced.
People who contracted HIV or hepatitis C via contaminated blood faced a huge amount of stigma. The AIDS crisis and lack of understanding about how the viruses were transmitted meant that many people lost jobs, friends and relationships.
There were also often financial implications attached to the new health challenges that came with infection. All of this had a serious impact on many people’s mental health.
Even today, the stigma attached to hepatitis C means that some people affected by the contaminated blood scandal do not speak about it. This can increase feelings of isolation and loneliness.
Those who had a blood transfusion during this time and have maintained relatively good health since may still be unaware that they are carrying the virus. Most people with hepatitis C may not experience symptoms for a long time. Delaying a hepatitis C diagnosis puts people at serious risk of irreversible liver damage.
Our role in the Infected Blood Inquiry
Our role as a core participant of the Infected Blood Inquiry is to provide supporting evidence to the Inquiry team based on statistics and common factors drawn out by the numerous calls to our helpline over the years.
Samantha May, our Head of Support Services, also spoke at the preliminary hearing and later presented evidence.