Around 100 of us crowded into the public gallery in the House of Commons last Thursday to hear a historic back bench debate on contaminated blood products. Haemophiliacs and von Willebrands, infected and affected, wives and husbands, families of those too sick to be there and widows and children of those who have died.
We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness. A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.
It started with a worrying turn of events. The government tried to amend the original debate motion. Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...". The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved. In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.
We were shocked and dismayed by this attempt to wreck our motion. However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.
Hooray we thought. There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate. The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.
MPs paid tribute to members of our community who have died and to those who are still waiting and dying. Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year. Where was the respect there?
It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to. It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted. To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit.
What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure. Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.
As one of our campaigners recently said:
We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness. A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.
It started with a worrying turn of events. The government tried to amend the original debate motion. Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...". The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved. In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.
We were shocked and dismayed by this attempt to wreck our motion. However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.
Hooray we thought. There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate. The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.
MPs paid tribute to members of our community who have died and to those who are still waiting and dying. Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year. Where was the respect there?
It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to. It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted. To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit.
What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure. Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.
As one of our campaigners recently said:
'You can't give us back our health, but you can give us back our dignity'.
The greatest despair though, came with the government's apparent inability to work out simple maths. The question was how did the government arrive at the figure of £3 billion that was in their amendment, and that was their estimated cost of putting in place a similar compensation scheme. The calculations were apparently accurate but were not able to be produced during the debate. We are still waiting to see them. We believe the costs to be far lower.
We are well aware as a community that the timing on this is far from ideal however it is important to note that the reason we were infected by these devastating viruses was not least because the government diverted money away from developing self-sufficiency within the UK blood products production. Money was not made available then, over thirty years ago and on many occasions since then when finances were there, administration after administration has ducked responsibility. We haven't just turned up wanting a hand out. For years successive governments have ignored the issue. It's not about party politics, it's about doing the right thing and it's about time that the victims of this disaster are given what they deserve - justice.
This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again.
However the vote was lost. Why was this? Because the government had produced a three line whip. This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang. It also meant that my own MP spoke passionately for us, but voted against us.
We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible. However what about getting your sums right before trying to write us off?
We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS. All we want is to not have to fight for justice anymore and to have our losses recognised. It wasn't right then, it isn't right now and we won't be going anywhere.
What we came away with is the promise to review the situation by Christmas. The present government have the opportunity to put this right and they need to know that we will never give up.
This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again.
However the vote was lost. Why was this? Because the government had produced a three line whip. This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang. It also meant that my own MP spoke passionately for us, but voted against us.
We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible. However what about getting your sums right before trying to write us off?
We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS. All we want is to not have to fight for justice anymore and to have our losses recognised. It wasn't right then, it isn't right now and we won't be going anywhere.
What we came away with is the promise to review the situation by Christmas. The present government have the opportunity to put this right and they need to know that we will never give up.
Fairness, Mr Cameron? Mr Clegg? Let's see some at last.
