Blood, Threat and Years: “The Worst Treatment Disaster in the History of the NHS”
The contaminated blood scandal in the United Kingdom has had a devastating and long-lasting impact on haemophiliacs and their families, which has led to a continuing, prolonged fight for justice.
I am about to tell you how this tragic chapter in the country's healthcare history, involving the distribution of blood products contaminated with deadly viruses to haemophiliacs has directly impacted me.
My name is Lauren, a member of The Fatherless Generation campaign group and I was sadly orphaned at 9 years old. My story begins with my father, who was a severe haemophilia sufferer. My father required treatment, blood products such as clotting factor concentrates, to manage his condition.
Haemophilia is a rare genetic bleeding disorder that impairs the blood’s ability to clot effectively, leading to spontaneous or prolonged bleeding episodes from minor/serious injuries. Fatally, much of the clotting factor concentrates were often imported from the United States, where the blood supply was contaminated with HIV and hepatitis C. Unfortunately, thousands of haemophiliacs in the UK were unknowingly exposed to these deadly infections through their necessary treatment, resulting in widespread infections. Many of them were infected at a young age, like my father, and the consequences have been nothing short of catastrophic (BBC News, 2018).
I was the little sister to two older half-brothers, growing up in what seemed like a relatively normal family where I often irritated the hell out of my older siblings. Unknowing to us, my father who was co-infected with HIV and Hepatitis C had regrettably infected my mother.
My parents hid their deteriorating health from us impeccably well, until the effects of my fathers’ infections could no longer be concealed, he moved out of the family home to be cared for by his parents. It was shortly after this, the summer of 1993, when both my father and mother passed away from their infections, within 8 days of each other. Subsequently, I was heartbreakingly separated from my two brothers who went to live with their biological father, and I moved away to live with other family members…… my life and my family was completely torn apart.
The contaminated blood scandal unfolded during the 1970s and 1980s. For those infected with HIV, the consequences were often deadly. In the 1980’s and 1990’s of the epidemic, effective treatments were lacking, and AIDS-related illnesses claimed numerous lives. The stigma and discrimination associated with HIV compounded the suffering of haemophiliacs, who had already been grappling with the challenges of their bleeding disorder.
Hepatitis C infections, on the other hand, had a different but equally devastating impact. Many haemophiliacs experienced chronic liver disease, which often progressed to cirrhosis or liver cancer. The physical and emotional toll on individuals infected with hepatitis C was profound, affecting their quality of life and life expectancy. Many of the haemophiliacs were co-infected with HIV and Hepatitis C, increasing the severity of the infections and health complications.
The contaminated blood scandal had broader implications for affected families as well. Many haemophiliacs transmitted the viruses to their partners and, in some cases, to their children during childbirth or breastfeeding. This led to a ripple effect of suffering and anguish, creating a generational burden of disease.
The Infected Blood Public Inquiry, chaired by Sir Brian Langstaff, was established in 2017 to investigate the circumstances surrounding the scandal and provide a comprehensive account of what transpired. The inquiry has heard countless heart-rending witness testimonies, such as mine, with Sir Brian Langstaff adding: “This has been described as the worst treatment disaster in the history of the NHS, and we have much to learn as a nation to help ensure that people never suffer in a similar way again.”
The Inquiry has uncovered numerous distressing findings, firstly, it revealed that the UK government and healthcare authorities were aware of the potential contamination risks but failed to take adequate precautions. They continued to import clotting factor concentrates from the US, even after safer alternatives were available. This negligence and lack of transparency resulted in the unnecessary and avoidable infection of thousands of haemophiliacs.
The inquiry also exposed the inadequate response to the crisis. Haemophiliacs who were infected with HIV and hepatitis C received subpar medical care, and there was a failure to adequately screen and test blood products. Furthermore, the lack of accountability and transparency by both the government and pharmaceutical companies raised serious questions about the interests and priorities driving these institutions.
The scandal not only affected the health of haemophiliacs but also had significant emotional and social repercussions. Many of those infected lost their lives prematurely, leaving behind grieving families. Families faced financial burdens as they cared for sick loved ones, and the emotional toll was immeasurable. Moreover, the scandal eroded trust in the healthcare system and government, as haemophiliacs and their families felt abandoned, isolated, and betrayed.
The ongoing efforts of the Infected Blood Inquiry has played a crucial role in acknowledging the extent of the injustice inflicted upon haemophiliacs and their families. It is expected to release its closing, final report in the spring of 2024 (Infected Blood Inquiry, 2023). After decades of failures by the UK’s state system, shame, and the constant, quashing of responsibility from successive political parties, the Inquiry and my campaign efforts have provided me with a platform, allowing me to have a voice to share my story and seek accountability for the failures that led to my parents suffering.
Despite the urgency of the situation and the inquiry having published final recommendations on 5th April 2023 to improve the support and compensation available to those impacted by the scandal, aiming to provide some measure of justice and closure, victims and I are still waiting for the government to “take moral action” and respond. The death toll from this scandal is still very much prevalent, where one infected victim dies on average every four days, where an estimated 55* victims have died since the April publication (Factor8, 2023), having sorrowfully died without the knowledge that their suffering and loss will be fully recognised.
Furthermore, it is also a stark reminder of the importance of transparency, accountability, and the need to prioritise patient safety in healthcare systems to prevent such tragedies from happening in the future.
*Figure at time of publishing, to see the real-time count please click here.
Written by Lauren Palmer - Forensic Science Student, UWE.
References:
BBC News, Contaminated blood scandal: Where does the UK’s blood supply come from? (available at: https://www.bbc.co.uk/news/health-45641186).
Infected Blood Inquiry webpage: (available at: https://www.infectedbloodinquiry.org.uk/)
Factor 8 Campaign webpage: (available at: https://www.factor8scandal.uk/)
