Factor 9 - pledge now to take this play to the Edinburgh Fringe

I am writing this post to ask for your help with the attempt to get an incredible piece of work shown at this year's Edinburgh Fringe Festival.  

A playwright called Hamish MacDonald has written a play called Factor 9 based on the contaminated blood tragedy whereby thousands of haemophiliacs and those with other bleeding disorders were infected with contaminated blood products.  The work is inspired by my friend Bruce Norval, a haemophiliac contaminated with hepatitis C, as I was.  The play premiered in Sweden in March and has so far toured Scandinavia and Wales.  

Below is feedback from an audience member:
"Two actors in front of a smart and really stylish set deliver a tumultuous story... They take us under the skin of two afflicted individuals. And their hunt for answers soon develops into a heartrending sort of crime story... Above all, Factor 9 deals with the intricate connection between cold medical research and economics that in the end reflects how we as society view our sick. And it is an horrific mirror image."   

There is a Kickstarter campaign to fund putting the play on at the Edinburgh Fringe, and it has until the morning of Friday 9 May to raise £16,000 in pledges to take the play to the festival and get it and our campaign vital publicity.  As of today a total of £13,865 has been pledged with 11 days to go and as we are so close to reaching the goal, I am appealing to you to help with the final push.

This link will give you more information and is where you pledge:

Kickstarter - Factor 9

As you know the contaminated blood campaign has been on-going for many years with various anti-climactic moments along the way.  The Penrose Inquiry is currently preparing to report: this is a Scottish government funded inquiry which has considered the subject from a Scottish perspective.  A lot of our hopes are riding on this as a way to shame the UK government into acting - dependent on the results of course.  The inquiry cannot unfortunately assign blame, nor can it enforce action but we are hoping that the evidence it has uncovered will go a long way to helping us achieve a final resolution.  We wait and see.  

Factor 9 was recently featured on Scottish TV News:

STV News Aberdeen

Getting the play performed at Edinburgh will mean mainstream press coverage and raised awareness and this is perfect timing given the imminent Penrose Inquiry report.  Any money you are able to pledge will not be collected until the total is reached.  I have donated what I can and I am asking if you have any spare funds to help towards getting this play into the public eye, and you feel it is a worthy cause, please make a pledge asap. There is a minimum pledge of £1 and, as the saying goes, every little helps.  

I personally would love to see this play, especially if it is on such a world stage as the Fringe.

Thank you to those who have already pledged. 

Do ask, if you have any questions...

Betrayal and Lies -- Please Share

This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.

It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.

Please take the time to watch and share it where possible.

Thank you x

Letter to the Health Minister regarding the Contaminated Blood Announcement

I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.

I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care.  I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it.  I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure.

I am really sorry to say that upon listening to your announcement I was bitterly disappointed.  Not only did it not offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise.  We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.

The results of the review and the ensuing support you have proposed will not offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.

Some points based on my own experience may help you to understand why I make the statement above.  I have a severe bleeding disorder, von Willebrand’s disease.  I received blood products from the NHS from the age of six months old.  I have been infected with Hepatitis C and exposed to vCJD.  In terms of what your announcement will provide me:

• ·         Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?

• ·         Free counselling – I recently underwent counselling from my GPs.  I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions.  We had barely stroked the surface.  I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support.  You are providing 6000 hours counselling over the next three years.  This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers.  I do not consider this to be a comprehensive solution.  Why impose such a limit?

• ·         Access to a discretionary fund – I have had two courses of treatment for Hepatitis C.  Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards.  Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C.  I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved.  However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain.  The idea that for any financial need I have to come begging to get even a modicum of help is not good enough.  Will this fund replace my lost earnings?  Will it compensate for not being able to get a mortgage or being unable to get sickness insurances?  Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore?  Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home?  I would like to know the remit for this discretionary funding as soon as possible.

What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum.  This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products.  However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.

I would like to also point out a number of other inadequacies that your new scheme will put in place.

• ·         You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing.  This is long overdue.  In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments.  Why is it necessary to have a cut off date at all?  Surely if someone is eligible it doesn’t matter when they apply?  Or is this an attempt to limit the number of applications and therefore the cost?  You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application.  By the end of March 2011 this will be nigh on impossible.

• ·         You are providing support to those who meet stage 2 of the Skipton Fund criteria.  This immediately divides the infected community to those infected and suffering, and those dying.  Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy.  I presume those annual payments cease once the person dies?

• ·         When HIV support was announced, whilst it was a flawed scheme, it at least paid out to all those infected, a decision you have chosen not to take for HCV infected.  I know when those payments were made, the prognosis for HIV infectees was bleak.  Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life.  However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.

• ·         The proportion of our affected community that will receive the ex gratia payments is roughly 15%.  I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.

• ·         I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed.  I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not.  I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help.  But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.

• ·         For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans.  You say it is up to them when and if they administer the same arrangements.  I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.

It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority.  You asserted a number of times that this was not due to cost but how else can one view these measures?

For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness.  Even then what we will be offered will be too little to be of much use and at a time which is too late.  That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children.  I’m not talking about a few exceptions within that 4000, I’m talking about most of us.  It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.

I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since.

I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different.  Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability?  Would you please explain how you think the High Court ruling does not apply?

Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion.  From the estimation I received from Anne Milton:

• ·         You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.

• ·         You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000.  This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million.

• ·         Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.

My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products.  It would also include payments of £750,000 to widows or families of those within the 4,700 who have died.  That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have included carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.

We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring.  And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.

You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:

• ·         A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion.  Or £467,200,000 per annum for three years.

• ·         An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.

• ·         The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on.  You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.

• ·         In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.

This illustration is my own and does not represent the views of anyone else.  Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.

In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest.  The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.

Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.



Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society.  Not holding my breath for replies...

Government Announce Results of their Contaminated Blood Review

I'm really upset. The government are doing the least amount they can for those who meet the stage 2 Skipton Fund criteria and widows who can prove that their partners met that criteria. This is a small minority of our community and an inadequate, difficult to fulfil criteria. It is so minimal I'm bloody crying. 

What about the majority of us affected by this, as Andrew Lansley the Health Minister himself said, great tragedy. Nothing. Actually not nothing, free prescriptions and counselling. Well thanks, that makes up for me being too ill to work, being unable to have children, being a sham of a person and having a totally uncertain future. Nice one. 

I intend to blog more fully about the Government's announcement and their arguments against doing anything more meaningful over the next week.

In the mean time - happy new year.

Contaminated Blood House of Commons Debate - 14.10.10

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:

'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.

Fairness, Mr Cameron?  Mr Clegg?  Let's see some at last.

Did anyone watch Newsnight?

I spoke to my friend Jason yesterday and he told me that there would be a feature on contaminated blood products on last night's Newsnight. The Independent Public Inquiry into Contaminated Blood and Blood Products was due to kick off today, so I assumed that was why Newsnight were running the story.

You'll normally find me in bed at 9pm so to stay up later was a challenge but with the help of a C.S.I. double header I just about made it to 10.30pm. Ade had gone to bed because he's been up at 5.30am that morning in was going to be doing that the following morning too.

I thought that having my own experience of infection with Hepatitis C, having been to many Haemophilia Society events and being involved in the campaign for compensation at one stage, the content of the report would be familiar to me.

I watched with growing sadness and disbelief as I realised how little I really knew. Both about how unsafe clotting factor products had been used even after safer treatments were available, about the possibility that bleeders were used in studies to understand the risks of HIV on human beings, how a child had been infected in the in 1983 at the age of 2 and had died at the age of 7.

I heard how a number of haemophiliacs had been infected and diagnosed with HIV and HCV and had not been told - some for even a number of years. What kind of medical care was that?? A kind that had a horrible sense of familiarity to me.

I was shocked and angered by the continued lack of responsibility that was being shown by the Department of Health. What was their sympathy worth...?

I really admire the people who appeared on the programme last night, they have been fighting for justice for many years at the same time that they are desperately fighting destructive viruses. I hope that the Inquiry will in some way take the fight forwards and finally get some acknowledgement, answers and some admission of wrongdoing. I hope that those still living with HIV, HCV, vCJD and who knows what other viruses will get some justice. I hope.

I am terribly sad about Colin, Pete and over 2000 other people with bleeding disorders who have lost their lives to these viruses. I am dedicating this post to all their memories.

xx

Link to the Newsnight feature - Blood Trials (thanks Ian):
http://news.bbc.co.uk/player/nol/newsid_6560000/newsid_6566300/6566349.stm?bw=bb&mp=rm
You'll need a media player to view it.

Link to the Indepent Public Inquiry website:
http://www.archercbbp.com/