Between the 1970s and early 1990s, over 30,000 patients in the UK’s National Health Service (NHS) were unknowingly subjected to blood transfusions and treatments made using blood products contaminated with hepatitis C or HIV. As a result, more than 3,000 individuals have since died, and many others continue to struggle with serious health conditions. Alarmingly, a significant number of people who were infected with these viruses may still be unaware, as the hepatitis viruses can lie dormant in the body for years, sometimes decades, before causing symptoms.
A particularly affected group in this tragedy was people with haemophilia. In the 1970s and 1980s, about 6,000 individuals with haemophilia and other bleeding disorders were treated with contaminated clotting factors that contained HIV and hepatitis viruses. These treatments, intended to save lives, instead put them at risk, with some unknowingly passing the infections to their partners. Among the thousands infected, approximately 1,250 contracted HIV, including 380 children. Tragically, fewer than 250 of these individuals are still alive today.
The Infected Blood Inquiry
After decades of campaigning, the Infected Blood Inquiry was established in 2017 to investigate the tragic consequences of this scandal. Led by Sir Brian Langstaff, the inquiry spent five years examining how individuals were infected with these deadly viruses through contaminated blood and blood products sourced by the UK government as early as the 1970s. The inquiry’s final report, released on May 20, 2024, concluded that there had been systemic failures at multiple levels—ethical, governmental, and medical—in dealing with the risks posed by contaminated blood products. The report emphasized the significant failure to address the risks in a timely and appropriate manner, and the devastation caused to thousands of families as a result.
The report’s recommendations included calls for immediate compensation for victims, public memorials to honour those affected, and an urgent need to learn from the past to prevent future medical and governmental failures. For the survivors and families, these recommendations marked an important step in their long fight for justice.
The Path to Compensation
In August 2024, the UK government took a significant step forward by announcing plans for compensation. A new body, the Infected Blood Compensation Authority (IBCA), was created to manage the distribution of payments to living victims, the estates of deceased victims, and the affected family members or spouses.
However, the delay in establishing this compensation scheme means that many individuals who were infected during the 1970s and 1980s have since passed away, never seeing justice or financial recognition for their suffering. The IBCA’s plan includes providing compensation to the estates of deceased individuals, but this raises several complex challenges.
For many of those who died young, often in their 20s or 30s, their estates may have already been settled long ago, sometimes without a will. Others may have passed away before the scheme was even established, leaving families and loved ones to navigate complex legal issues. Executors and beneficiaries of these estates may also have died or experienced significant life changes, such as remarriage or changes in family dynamics, further complicating the distribution of funds.
The Challenges of Estate Distribution
The issue of estates and probate is a source of ongoing concern for those affected by the Infected Blood Scandal. The Haemophilia Society (HS) has been receiving numerous inquiries from its members regarding the administration of estates and the distribution of compensation. These range from simple questions about the probate process to more complex family disputes, where the surviving partner could potentially receive the full compensation, excluding children or other beneficiaries.
Given the complexity of the situation, HS is offering support through educational resources, including an online seminar that took place on 6th November 2024.
BTMK’s work with the Haemophilia Society
Adam Fleming, one of the directors of BTMK has severe Haemophilia A and was infected with Hepatitis C through his treatment in the 1980s. Adam had treatment for this virus before starting university and has remained close to the Haemophilia Society, and the fight for justice, ever since. He recently participated in the seminar with the Haemophilia Society to address common questions and provide guidance to those navigating the legal landscape.
Adam’s personal experience adds invaluable insight into the struggles faced by those affected by this scandal, and his involvement in the Haemophilia Society in the past gives him a unique perspective on the issues at hand. Adam has been working with Saul Caplan, Sophie Bacon and Kavita Ryatt to provide a cross-section of people at BTMK ready to assist people in respect of these issues.
The Emotional Toll and Trust-Building
This issue remains deeply sensitive and emotionally charged. For over 40 years, individuals and families affected by the infected blood scandal were told by successive governments that they were wrong and that no deliberate harm had been caused. The Infected Blood Inquiry’s final report, however, exposed the truth, shedding light on the negligence and failures of the state. This has been a hard-won victory for the affected community, and it is vital that those involved in the compensation process approach the situation with the utmost sensitivity and understanding.
As we move forward, there is an opportunity to build trust within this community by ensuring transparency, fairness, and compassion in the distribution of compensation. Adam Fleming’s experiences, combined with the expertise of the BTMK team, provide a solid foundation for offering much-needed legal support to those affected by the scandal.
The Haemophilia Society is working closely with BTMK to ensure that members have the right resources and guidance to navigate the ongoing process. This collaboration highlights the importance of support networks and legal expertise in helping those affected by the infected blood tragedy finally receive the justice they deserve.
You can contact Adam at BTMK directly via the details below should you need any assistance.
01702 238 519
