Monday.
I was not prepared for the emotions that erupted in me on Monday. Oddly, I had not considered how I would feel when the Infected Blood Inquiry Report was published. I hadn’t believed that it would take centre stage on the news, be the topic of conversation at people’s dinner tables or at the pub, and finally produce a government apology – and for that apology to be quite as meaningful as I felt it to be.
I was not prepared for the love that was shown to me from friends, many of whom I have not spoken to in over 20 years. I was not prepared for people’s shock that they simply weren’t aware of both my situation, or indeed of the scale of the impact and the fact that the disaster extended beyond the haemophiliac community, but was far more widespread than they realised.
I was happy that there was now a chance for people to stop and think “Shit, I had an invasive operation in the 1970s, 80s or early 90s. Maybe I was given a blood product or a transfusion in the process. I should go to my GP and request a Hepatitis C test”. I was happy that there was a chance for the stigma to be lifted – it felt like that had begun. I was cautiously happy that the surviving infected blood community could, at last breathe, and the lost could rest more peacefully.
I went to bed feeling that the vulnerability I had shown in my blog piece on Monday morning was being rewarded and that my voice – and tens of thousands of others – was finally being heard. I closed my eyes wondering if tomorrow would bring further belief that the state was getting out of its own way and that institutions could, in fact, change for the better.
Tuesday.
More messages, this time from two friends who underwent blood transfusions in the 1980s.
I had been heard.
Enter John Glen MP.
The idea of financial compensation has always made me uncomfortable. Overthought (I do a fair bit of that), it’s the price of your life laid bare in front of the world whilst you’re still living, and at least for me, there is guilt.
Guilt that others have suffered more, for far longer (at least consciously). In the case of the infected, in death or the deep stigma that an HIV or even a Hepatitis diagnosis brought in the 1980s and 90s. In the case of the affected, decades dedicated to care, followed by decades endured with grief and injustice.
I have only been cognizant of my illness since 2018 – after the Infected Bloody Inquiry was set up. A fraction of the timelapse of known pain and conscious suffering that most other victims have experienced, although perhaps a deeper loss of autonomy and, as I talked about on Monday morning, wounding depths of existential pain and unconscionable grief.
Any compensation I receive may be for the injustices of the past, but my wife has done a sterling job of pointing me to an uncertain future, one that, as much as I try to avoid thinking about it, conceivably may not physically involve me for as long as we would like, but must involve a legacy that attempts to outlive and outshine any life I may have had, if only this had not happened to me.
Financial compensation is vital for that very reason – not just in an award for me, but for her and my family, as the proposed scheme lays out. Indeed it will help open the door for me to give more of myself to my family and friends, to worry less about the short term and allow me to accomplish more for the world around me – and indeed, for myself. I have always considered it a virtue and strong character trait to be unselfish; to give more of myself than I receive in return. Hepatitis C has meant that there was always less of me to give than any of us realised, so it’s right that I take a bit back – even if the stubbornness in me will always prevent me from doing so sufficiently.
The smaller print of the initial proposal for the compensation scheme that is to be delivered by the Infected Blood Compensation Authority (IBCA) is somewhat concerning, though. Both via the mouth of the Paymaster General, Mr Glen, from the Despatch Box in the House of Commons on Tuesday morning and in the detailed summary of the proposed scheme on the government’s website, it is clear that the government, upon settlement of compensation awards, intends to end the vital Infected Blood Support Schemes, which have provided the infected with monthly payments that have been critical for most victims and provided in the understanding that these payments were for life AND not in lieu of compensation.
Whilst Mr Glen made it clear that any compensation awarded would be topped up to match the amount provided through infected blood support schemes, this would, when measured against the status quo, mean that no award would in reality be made. Not cool.
Still, I went to bed on Tuesday night safe in the knowledge that, with the voices of the infected and affected now being heard everywhere, there was plenty of headway for the “minutae” to be ironed out in Parliament and, with Sir Robert Francis at the helm of the IBCA, confident that the Inquiry’s recommendations would be upheld. The state had nowhere to hide with the court of public opinion wide, wide open – even without an ITV mini-series.
That justice could indeed prevail.
That the undiagnosed would gain the knowledge and space needed to realise that you can live with Hepatitis C for decades without knowing it.
Wednesday.
Two days. Two fucking days. That’s how long “the greatest injustice this country has seen” (Andy Burnham) was allowed to remain at the centre of public discourse. Paula Vennells’ sobbing in to her tissue ticked me off, but then came an event that pushed any coverage the Infected Blood Scandal had been getting from the headlines to an after thought.
I had believed Rishi Sunak’s statement to the House on Monday. I wasn’t a million miles off wanting to accept his apology, given on behalf of 9 successive governments. I believed from the speeches given from the respective major parties in the Commons and the devolved parliaments that, perhaps, politicians and the state were capable of change – of not playing politics with people’s health.
With a General Election now called, there is a strong possibility that the Victims & Prisoners Bill does not pass as law in the wash-up before Parliament is dissolved in a few short days; that all that was promised, literally on Monday, is not delivered to those who need both justice and redress before it is too late; that the promise for candour amongst civil servants and politicians, coupled with a changing of ways is quickly forgotten in campaigning and electioneering… no politician out on the campaign trail, save perhaps the wonderful Dame Diana Johnson and Sir Peter Bottomley, will dare stand up for victims of a disaster built on state flaws, mistrust and cover-up involving all three of England’s leading parties.
The Infected Blood community, like many other embattled movements in recent times, is not going away, whether victims live to see justice or not. We are used to false hope, but this is brutal and unforgiveable. Whilst compensation may come as originally laid out, or a few months or years later under a Labour government, in an effort to ameliorate the damage on our health that the Infected Blood Scandal wrought, Rishi Sunak has robbed us of the one major thing Sir Brian Langstaff proclaimed we had accomplished with the publication of the report on Monday – having our voices finally heard.
Today.
Right now, I suspect the “major issue” chatter around family dining tables has moved on to talk of the election. Friends meeting up in pubs are talking about the Euros. The Infected Blood Scandal is in their rear view mirror. A problem solved. A community’s grievance compensated for. Nothing for us to worry about. Their all-too-fleeting thought that, “maybe I was given a blood product or transfusion during that operation 35 years ago” now gone from their minds.
“It can’t have happened to me. Ooh, there’s a funny Rishi Sunak meme”.
If you haven’t guessed yet, I’m not going to let the message fade quite so readily, even if this blog and my social media profiles don’t quite have the reach of newspaper front pages and round the clock news channels.
It’s feasible that I may have already helped to save two lives this week by putting my vulnerability out there. It should be eternal shame & damnation for Rishi Sunak that he’s blocked this message from being delivered to thousands of others, but this wound he or any other politician tries to widen is already open and whilst the scars will always remain, I, like many others, am determined not rest until justice is delivered and the lives and memories of those known and unknown victims of the Infected Blood Scandal are treated with the respect they deserve.
(Photo: REUTERS/Hollie Adams)
Tom Galanis 