The voices of those affected by the infected blood tragedy were silenced for too long

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I served as one of six members of the infected blood inquiry health economics expert advisory group, charged with estimating how much this disaster has cost the UK public. Based on our crude estimates the number sits somewhere between £2bn and £4bn, as of 2021 when our data ended.1 These estimates cannot come close to a true representation of the lifelong costs of being infected with a chronic condition like HIV or hepatitis. We estimated a total loss of somewhere between 70 000 and 200 000 quality adjusted life years. These represent potentially hundreds of thousands of years of life in good health lost because of interaction with the NHS. Let that sink in. Hundreds of thousands of years that could have been lived by sons, daughters, brothers, sisters, mothers, fathers, grandparents—gone. Many early infections were unavoidable because of a lack of data, information sharing, and understanding of bloodborne virus transmission. As evidence mounted and general acceptance of the transmission of viruses through blood grew, however, the damage was entirely avoidable.

I listened to witness after witness tell their stories to the inquiry. Again and again I heard variations of the same narrative—that when suspicions were raised by patients, by doctors, by members of parliament, that “unexplained” illnesses may have been transmitted by blood and blood products, they were quashed as ill informed, sensationalist, and wrong. Over 30 000 people are estimated to have been infected before action was taken and a decades long game of blame and deception has ensured that the lives of those affected were never the same.

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What can we learn from the inquiry? Distrust in both the health system built to protect and save lives and the political system that underpins it continues and we must ensure that lessons are acted on to prevent harm to other groups of patients.

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Today, the British government is failing another population—women and girls. The UK has the largest gender health gap of any G20 nation and the 12th largest globally. Recently an inquiry by the All Party Parliamentary Group on Birth Trauma concluded that “trauma was caused by mistakes and failures made before and after labour. Frequently, these errors were covered up by hospitals who frustrated parents’ efforts to find answers.”2

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A fundamental principle of patient centred care is listening to the patient—the infected blood tragedy tells us that too often patients are dismissed because their complaints are inconvenient. The same can be said of women in the UK, who have not had their health concerns heard. Indeed, in a call for evidence as part of the women’s health review, 84% of the almost 100 000 respondents indicated that they were not listened to when they expressed concern about their health or care.3 Women are more likely to have debilitating pain and less likely to be treated for it in comparison with men. Female specific conditions such as endometriosis and menopause are under-researched and poorly understood. Women experience 50-75% more adverse reactions to drugs than men, as a consequence of women making up less than 25% of participants in clinical trials.

The Ockenden review into maternity services highlighted systemic failings across the UK, deriving at least in part from ignoring women when they tried repeatedly to raise the alarm that mothers and babies were dying from wholly preventable causes in NHS care. I had the misfortune of being one of those women4 after two failed inductions to bring my first child into the world at close to 43 weeks pregnant. Despite highlighting that immediate action was needed as my baby’s heart rate was steadily slowing, I was ignored and labelled as “obstructive” in my hospital notes. My daughter is almost 5 and both of us survived with no lasting damage, but this experience of expressing panicked alarm and being told to be quiet will stay with me forever.

How can we prevent further avoidable harm and make meaningful strides towards building a system that protects and promotes health for everyone? We start with listening and reflection, and we keep going with engagement and collaboration. A system without trust cannot achieve anything, and trust cannot be gained until relationships are built and maintained. Only with true collaboration, community driven monitoring and governance, and a person centred approach to care delivery, will trust be built and progress made towards the health of everyone.

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