Next week is a milestone in the history of the contaminated blood campaign. It is the publication of the final report from 7 years of hard work put into the Scottish Public Inquiry into Hepatitis C/HIV acquired infection, from NHS treatment in Scotland with blood and blood products.
What does this mean?
Good question. This is the first and only public inquiry that has been conducted into a scandal that has been continuously whitewashed by previous UK administrations. This is the first time that comprehensive investigation and examination of the facts surrounding thousands of people being exposed to contaminated blood has taken place. Other than by campaigners themselves of course and Lord Archer’s private inquiry. Lord Penrose has taken evidence from those directly affected or their surviving families. He has had the power to call those involved in decision making to give evidence. His scope has been limited to the events and victims in Scotland but any recommendations made and all lessons and implications for the future that are identified, will have national ramifications.
We have reached milestones before. The Lord Archer private inquiry. Pittances offered and inadequate schemes set up. Debates and votes in the House of Commons. Reviews of current arrangements announced. This has been an incredibly difficult journey with many obstacles. Many of my friends and fellow bleeders didn’t make it. They fell by the wayside, in some cases many years ago, in some cases within the last month; still they fall and the journey isn’t over.
What I hope is that this is the final milestone, that this leads us into the last lap and then it will be over. Tomorrow won’t be the end because Lord Penrose can’t force action, only make recommendations, but I deeply hope that this is the commencement of the final act. One thing I truly want is to be able to stop fighting. To fight no more the authorities, the MPs that betrayed us, the organizations who supposedly represent us and sadly even the victims we are alongside as we are sometimes driven to by the depths of the despair within us.
I have to admit I’m scared. I am more optimistic about this than anything that has come before. I hate that it has taken so long but equally, that length of time gives me hope that the process has been incredibly thorough. I can’t get over how many people have died during the course of this tragedy, how many have been at death’s door and crawled their way back thanks to organ donations. You may not be aware but this is the 15th biggest disaster in terms of death toll in UK history.
You may think by looking at me that I’m fine, that this hasn’t really affected me. I’m afraid as the adage goes appearances can sneak up behind you, tap your left shoulder and smile a cheery hello, whilst pilfering the family jewels from your handbag. The terrible thing about this contamination is that once the indiscriminate, and in some cases discriminate infection took place, we as patients then faced a Russian roulette as to what happened next. We had no control over any outcome. Who survived, who died was pure chance and something we sleep with every night we survive. Yes, there were treatments but these caused massive problems in themselves and had no guarantees. Not only do we have this constant fear but our families do too. Imagine for one moment how you would feel if you had allowed a doctor to inject something into your child which turned out to be full of HIV or Hepatitis C. The guilt is almost unimaginable but this is what the families live with. If you survive while your friends and family don’t, imagine what that does to your already compromised mental health. I may look fine but I’ve been unable to work fully since my Hepatitis C treatment because of the damage it did to my health, I was unable to have children because of the risk of infecting them, I dread the future and expect that one day these multiple viruses will take their toll as I’ve seen them do to many of my friends.
I contain the psychological trauma in the main and appear to be dealing with it. I even convince myself that I am. Then something tiny will happen, I trap my finger in a clip lock box, I lose the nose pad from one side of my glasses and I cannot contain the eruption of emotion that follows. I swear, shout, hit things. I can’t help it and asking me to calm down will only make it worse. Having flipped the nose pad off my glasses in mum’s car as she dropped me at the station earlier today, I flipped. As the hail came down I searched in vain for it, then gave up and harangued the ticket machine as I collected my train tickets. I swore at it and hit it. Then once mum and dad had gone, the sympathetic look from a man who must have witnessed this outburst was enough to drop me deep into a well of sadness. I might’ve cried but it was raining too hard to know.
Please Lord Penrose lift this weight from our shoulders and hand us a towel. I long to be able to sit with my remaining friends, toast those who are no longer with us, and say we did it. We bloody did it.