The contaminated blood scandal in England: exploring the social harms experienced by infected and affected individuals

During the 1970s and 1980s, over 30,000 people in the UK were infected with HIV and/or hepatitis C because of treatment with blood and blood products for conditions such as haemophilia or through blood transfusion. We used the social harms perspective to understand the experiences of those affected. We conducted in-depth interviews with 41 infected people and 11 family members and analysed the data according to five dimensions of social harm: physical harms, psychological harms, cultural harms, economic harms, and harms of misrecognition. We found that people were harmed by the medical system, the social context that perpetuated stigma and shame against them, and successive governments being largely unwilling to address the many health, social, and economic impacts of infection on families. What stood out were the many reports of harms of misrecognition, which were often experienced as more irreconcilable than the circumstances of infection itself. They were also harms that have been largely ignored. While patient safety encompasses a broad field of work, much of the research focuses on physical harm and medical error. The social harms lens can provide important insights into patient safety incidents as it can help explain the complexity of the different dimensions of harm that individuals and their families experience.