The confidence we have in our health systems is at the core of how we use and, hopefully benefit, from them. If we lack confidence in the benefits of going to see our GP for a health check, seeing a nurse about a travel vaccination or asking advice from the local pharmacist why would we bother? In terms of dealing with drug and alcohol problems the importance of a positive therapeutic relationship or alliance is recognised not just as being a pleasant “extra” but being central to aiding recovery. It has an important role across all fields of treatment. There are also benefits where a society has faith and confidence in those that oversee and provide healthcare systems and treatments at a population level. By and large, despite many complaints and challenges, the National Health Service in the UK remains a highly valued and trusted part of our society. And rightly so. But that doesn’t mean we should shy away from acknowledging where things have gone horribly wrong.
The use of contaminated blood products in the 1970s and 1980s, which exposed thousands to HIV and Hepatitis C, the responses of successive governments and the ongoing battle by campaigners to expose the truth and get help for those harmed, provides an upsetting and dismal tale. One which asks questions of the role of private companies, the Civil Service and healthcare professionals. Forty years on the current Infected Blood Inquiry is the latest to try and provide answers.
I have crossed paths with this health disaster several times, the first few long before beginning work in the drugs field. During the 1980’s my mother worked as a senior nurse in a busy, East London Accident and Emergency Department. By the nature of their condition haemophiliacs tend to be well known at their local Emergency Department. Back in 1987 I recall my Mum talking to me about the fact that many of their well-known haemophiliac patients had died. Some had succumbed to HIV/AIDS, which though recognised, was a terribly frightening and effectively untreatable condition. Others were dying in less well understood circumstances (a test for Hepatitis C was not available prior to 1989). What was clear to a front-line nurse was that something had gone terribly wrong, and the toll in lives was significant, with over 2,000 haemophiliacs dying due to contaminated blood products. I had an additional interest as a friend of mine had the condition. Fortunately, he didn’t develop any serious illness at the time but did find out many years later that he had been infected.
Roll forward a few years and I was working within the Civil Service and one of the earlier attempts to detail exactly what had gone wrong was established. This, according to informed gossip, soon ground to a halt due to the failure to locate key documents. Eight years later I started work in the drug field and one of the first meetings I attended was about the need to do something about Hepatitis C, this time with the focus on those who had contracted the virus via intravenous drug use. Nearly two decades after that we, are at last, making real progress, thanks to the development of highly effective and tolerable drugs. There is a sense of optimism that we could be on the verge of eliminating this disease, the first time we would have achieved such a feat by treatment alone. Yet there remains the issue of how we face up to the fact that thousands of our citizens died because they were given contaminated products, even after problems became apparent. Further injury and insult have been caused by the failure to properly support or compensate the bereaved or those whose health has been compromised. Many victims have been left dependent on charity for financial support. Government responses have often seemed reluctant and mean spirited. No organisation, department or senior individual has ever admitted responsibility.
Yet it was clear by the late 1970’s that there were grounds for significant concerns about the way blood products were being produced and imported into the UK. Overseas donors, including prisoners, were being paid, no screening was being conducted and production methods meaning that tens of thousands of individuals blood were being mixed together. A recipe for inevitable disaster. In 1982 the Centre for Disease Control in the USA reported the first suspected AIDS deaths due to contaminated products. The US authorities warned their UK counterparts, but little was done. Importation and use of contaminated products continued, with many professionals rationalising the situation on the basis that the potential risk of infection was outweighed by the certainty of serious harm or death if they were not used.
Previous investigations and interviews have demonstrated that many records and documents relating to this scandal have been lost or destroyed. A former Health Office Minister stated he believed there had been acts of negligence. The current testimony of those infected provides a horrifying insight into professional attitudes with people experiencing considerable stigma. The attitudes and actions of members of the public are also pretty horrific where some were subjected to abuse in the street, including being spat upon. No one can deserve this. Least of all when it is a result of essential medical treatment.
My hope, and that of all those more directly involved than me, is that there is a proper accounting and explanation of how this situation arose. I have no doubt that the protection of profit lines and reputations are a factor. We must also hope that the Government and health service move quickly to provide the full range of financial and treatment support these individuals clearly deserve. I also hope that there are some lessons here in terms of professional humility and the importance of not losing sight of individuals within large systems. We should all applaud the bravery and persistence of those who have fought for forty years to right this wrong.