Live updates as contaminated blood victims march on Westminster today
- Credit: Copyright: Archant 2016
It was only when contaminated blood victim Alan Kirkham discovered he would be denied a full inquiry into the cause of what he calls the 'biggest scandal in NHS history' that he became angry.
Until then the widowed father of five, from Hellesdon, assumed the state would do the right thing by him and hundreds of other victims.
This morning he hopes to join their voices in a march on Westminster calling for justice and a fair settlement.
'I want to know why the decision was taken to poison me,' he said. 'They knew at the time there was a risk, there is no doubt in my mind about that.
'If they keep delaying there will be less of a protest group. The more of us die, the less there are to fight our case.'
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Haemophiliac Mr Kirkham, 68, was infected with hepatitis C (hep C) from a blood transfusion during an operation on his ankles in 1983 to fight the arthritis which was limiting his movement.
Two weeks ago he was given the all clear after being admitted onto a three month clinical trial on Sofosbuvir; a drug for treating chronic hep C costing around £35,000.
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'When they first told me about the hep C they said not to worry; it was like having the flu and wasn't going to be serious,' he said.
'I didn't know there was anything more wrong with me until I did the screening.
'Looking back it was obvious, because I had slowed right down. At the time I put it down to stress.
'I took the doctors at their word, even though I had already started hearing about the problems with blood. It never occurred to me it would affect me.'
'I am one of the lucky ones, but hundreds of us are dying while the rest are looking on. I know at some stage my liver is going to give up, and that is how I'm going to die.
'I was scared. Really, seriously scared. Dying of sclerosis is a terrible way to go, but I know it's coming. I used to imagine the hep C as like a Pac-Man inside me, running around and gobbling up bits of my liver. The relief now is the Pac-Man is gone, but the damage is done.'
Now the Norfolk rep for the Haemophilia Society, Mr Kirkham wants to ensure treatment is made more widely available and is outraged the compensation being offered could leave his fellow victims at a loss.
'Since the [All Party Parliamentary Group] report came out I have been fairly fatalistic about it,' he said. 'I was sure at some point the Government would come up with a reasonable package, and I just got on with life. But when the Government made it perfectly clear there was going to be no inquiry, that is when I started to get angry.
'Now they are saying they are going to take my money away from me.
'There needs to be more than a politician's apology. We all need the healing that was given to me and not to others because I was lucky. 'There is that top-down sense of betrayal, and nobody genuinely making efforts to make it right.'
Victims of the contaminated blood scandal will march on Westminster today wearing the campaign colours of black, red and yellow at the same time as politicians discuss the matter in the House of Commons.
As part of a bid led by Norwich North MP Chloe Smith, Diana Johnson and Margaret Richie, MPs will debate on the prospect of reform of support arrangements for victims of contaminated blood.
Thousands of people were infected with hepatitis C (hep C) and more than 1,000 HIV after being treated with NHS-supplied contaminated blood or blood products in the 1970s and 1980s. Many have died in what is one of the UK's worst peacetime disasters.
Campaigners hoped a long-awaited government consultation on a new blueprint for payments and support for victims, announced in January, would be a huge leap forward in the fight for justice.
But it has caused outrage amongst campaign groups who claim most victims will be left worse off under the proposed reforms.
Sue Threakall, of the campaign group Tainted Blood, said: 'The reaction to the consultation has been one of dumb despair even among seasoned campaigners.
'There's absolute shock that a government that has been working with us and seemed to think they could get it right has got it so catastrophically wrong.
'It needs to go back to the drawing board. The government needs to say we got it wrong and we're going to revisit this - not in six months or 12 months but now.'
Campaign groups have demanded, as a minimum, that any proposed payouts for English and Welsh victims of the disaster are at least equivalent to a support package already on the table for victims of the blood scandal in Scotland.
The protest comes ahead of a backbench debate in the House of Commons this afternoon.
MPs are due to move a motion asking the government to recognise the contaminated blood scandal as one of the biggest treatment disasters in the history of the NHS.
The debate will call for the government to recognise some victims will be left worse off by the proposed reforms and that key groups affected by the scandal, such as widows and children of the dead, are left out altogether.
Ardent campaigner Annie Walker, of Mousehold House, Norwich, died on 27 March aged 62. She had contracted hepatitis C from an otherwise routine blood transfusion at the age of just 19, which then caused cirrhosis of her liver and led to cancer in 2014.
She is one of several victims in the region.
Journalist Emma Youle will be reporting live on the protest and the debate from the House of Commons.
Follow the latest updates on @emmayoule