If you’ve heard recently about the Infected Blood Inquiry and read the media reports you may be getting the impression the NHS fucked up. You may be thinking that we, the contaminated community, are waging a decades long war against the NHS. That we are accusing them as a body of destroying our lives and that we expect them to pay for it. At a cost of potentially billions, you may be thinking how destructive and selfish this is and wondering why we want to bring the NHS to its knees.
I’d like to put you right. If I may.
You see here’s the thing, we bleeders rely on the NHS to manage our bleeding disorders and the many viruses we have been generously given over the years. When we were kids we loved the NHS, the hospital was almost an extension of the family home, well for me it was because I spent so much time there. Almost every week we were up there getting bleeds looked at and treated. Getting, in our innocent eyes, made better.
We’d known the nurses and doctors that treated us since our diagnosis and they felt like family. We trusted them. We trusted the treatment. We had no reason not to. And that’s what you did right, we all accepted the doctors knew best.
I had conversations with the wonderful Sister Shaw I couldn’t have with my parents. Got advice from her about everything from periods to piercings. She was the kindest person I may have ever met and she genuinely cared about the children she treated.
Nowadays I still go up to the hospital quite often. I have regular physio, dental, orthopaedic and of course haematology appointments. I am sometimes admitted if I need to be. I am provided with treatment that can mostly stop me bleeding.
It’s not the same now as when we were kids. I remember a waiting room full of children bleeding and worried parents, endless echoing corridors we ran up and down, or wheeled up and down if you’d got an ankle bleed, gigantic fish tanks to gawp at, huge furry donkeys to climb on and pretend you were riding. What the heck was that about?! We made friends. Our parents connected with others and we even attended social events hosted by those handling our care.
Glory days. Gory days, certainly.
Then at some point the socialising ceased. Meeting others in the waiting rooms became more and more uncommon. You went to the hospital. Had your treatment or got advice. You left. You wouldn’t see another bleeder. It became lonely. Isolating. At that time you didn’t wonder why.
I miss the days before infection. We still however, need those who provide our care.
Our problem is not with the institution, although systemic flaws were evident they were not endemic and did not in and of themselves result in our destruction. Yes, post contamination we were sometimes faced with derision, with disgust and unfair judgement but that is not the root issue with which we have to deal.
Our issue is with governing bodies to whom we were merely statistics, is with directorial associations who thought of themselves as omnipotently able to dictate the course of our lives, is with funding commissioners who wrapped ropes tightly around the purse of public money and held it to ransom with no regard for our safety.
It is they that fed off the power they held. They that chose to make life and death decisions for our minority group based on what? A desire to publish a study? To test a theory? To prove a point?!
Those that made choices on our behalves, without even considering we if should have a say. Those who weighed up the risks and benefits and passed their lofty unethical judgements, believing us incapable? Too stupid to understand? Too ill to be worth investing in better treatments for? Too expensive to warrant the best level of care? Too convenient a cohort to study? Too dispensable to even ask?
Our doctors from their perceived positions of power made those choices. Not every doctor did, but many. Certainly enough to wreak havoc.
Then once that havoc was wreaked and it became apparent that, yes, HIV was transmitted through blood as expected, that yes, Hepatitis non A non B was hugely contagious and affected every single one of us that had been exposed to blood products; what did they do? These men and women in positions of power who we believed in like a trusted friend?
Did they hold their hands up and say, my God, we have done a terrible thing. We made decisions, took risks and these are the consequences you are now facing. Did they prostrate themselves at our knackered feet, acknowledge their fallibility and beg for forgiveness, profusely apologising for the errors in judgement and the horrific mistakes they had made.
They opted in most cases not to tell us.
To hide from us the viruses they had chosen to expose us to. Endangering us not only to ourselves but to those around us, those we loved.
To make matters worse they then began a long process of hiding from us any evidence that existed that this had even happened. Was it then notes were being destroyed and white-coated backs covered, before we even had knowledge of what had been done to us? The devil they had put inside.
Ask any one of us and we will be able to tell you about that doctor who made a huge difference to us: the orthopaedic specialist who fixed our knee joint, the GP who has supported us through our decimated lives. We may describe being helped through difficult times by our nurses, crying on their shoulders, being cheered up and encouraged on as we limp ever forward.
We appreciate them. We appreciate the dental care, the physios, the social workers and the secretary who sorts out our benefits application and customs letters. We appreciate the principle of free treatment for all and clearly will never dispute that. That’s the NHS and we all need it.
We are absolutely not expecting it to compensate us for our devastated lives. We would actively dispute any compensation mooted as coming out of NHS budgets. That is not our objective and the government knows this. We know the funds exist within government to sort this, so from a financial and moral point of view our fight is not with the NHS itself. We have no wish to see it on its knees.
However, when we eventually discovered that we’d been damaged by those who were promising protection and to do no harm; that those, with whom we had a long term relationship, those we trusted and did not question, had deceived and derided us. That was the first punch in a long line of punches. That was when a little trusting part of us died. That was when our belief in the system, in our specialist doctors was destroyed and our safety ripped from our grip. We lost our faith. We lost our support. We gained distrust and a sense of real danger from those in whose hands we had placed our lives.
Those hands are stained with the blood of so many and it is those hands we are grasping. We are pulling them inexorably into the light.
No more hiding. No more lying. Step humbly into the light, get down on your knees and seek redemption.
We expect nothing less than the truth the whole truth and nothing but the truth, so help you – you are not God.