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...

In the words of Gloria Gaynor ...

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand's disease
I have less than 3% Von Willebrand's factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it's safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70's and early 80's
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

Meeting with Anne Milton, Health Minister, October 24th

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London.  My MP, Mark Garnier, managed to get me on the list of attendees.  I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today.  We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made.  Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease.  People within the Stage 1 group are ill, but not through liver damage. 

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure.  We believe that none of these objectives were met.  Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help.  Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.  We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness.  We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. 

Some of us belong to the various contaminated blood campaign groups.  I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions.  We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

 

Your Blood Supplement - Part 3

This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement.  Only a tiny bit was included in the final piece and you can see it here:

Your Blood Supplement

Your Blood - Part 3

I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products.  Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.

I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.

Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later.  The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder.  I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.

I’m now 37 and bleeding-wise I am pretty stable.  I’m on high dose hormone pills to control my periods still, which suits me.  The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort.   I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even.  My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere.  I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat.  I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed.  My attitude is that I get on with things and don’t worry because my mum does that for me ;)

I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up.  If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous.  The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population.  Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family.  In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required.  The knowledge of those involved in the care of people with this condition is increasing all the time.

For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor.  This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles.  The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such.  Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower.  I believe however we are getting there and for me this will be a great step forward in the next few years.  I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.

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.

HCV and Me - An Affair To Forget

You came into my life insidiously.

Like a demon you crawled under my skin,

through my veins and into the heart of me.

Unaware of the danger I plunged on,

not understanding what it was

I was introducing to myself.

You were there

from the very beginning,

intrinsically part of me.

But I knew nothing.

Ignorant of how you were taking over my body,

destroying my soul.

When, later on, I discovered you,

you blew me away.

Turned me upside down

dragged me inside out.

Possessing.

Obsessing.

Flung my life in an unexpected, unbalanced direction.

You exposed my dark and twisted self.

I was never to be the same.

I railed and fought to resist

the all encompassing nature 

of your poison.

Yet you clung to me,

weighing me down,

changing me,

infecting me,

draining me.

Now am I free of you?

Are you gone?

Have you left me, in peace?

Or still dangling,

turning like a body hanging from a tree,

waiting for the wind to pick me up

and play with me once again.

I hate you.

For the gifts you gave me.

The tumultuous emotional tornado,

the paralysing physical pain.

But you made me.

Who I am.

You are still hidden within.

There will always be a fragment of me

devoted to you.

Ichabod is itchy ...

... and so, the blinking heck, am I!!  

This time of night is a particularly pleasant time for me.  Every night is the same; though it is worse if I am more tired.  Basically I formicate.  Every night.  And it isn't fun.  It's ... hang on a mo ... that is not what I said ... scrape yourself out of the gutter and pay attention ... formicate, I said formicate.  

Here an itch, there an itch - everywhere an itch itch

Formication, according to the wordly-wise wonder that is Wikipedia, is derived from formica, the Latin word for ant.  Formication is the medical term for a sensation that resembles that of insects crawling on (or under) the skin.  Formication is a well-documented symptom that has numerous possible causes. 

She itches here ... she itches there ...

For me, my formication habit began when I had my interferon treatment for Hepatitis C, back in 1999.  It was one of a glut of delightful side effects which still lingers long after that original year of treatment.  The definition - which I only had from my CFS specialist this last year - is uncannily accurate.  If you will: imagine hundreds of ants crawling just underneath your skin (horror movie stylee).  However, they are not just in one spot.  Imagine those subdermal ants crawling on the top of your right foot, for a couple of seconds, then on the inside of your left ear lobe, then on the back of your right index finger, then across your stomach, then your left shoulder blade, then just under your eyes.  Uncomfortable yet??

The Itchy and Scratchy Ros

This pretty much describes the sensations I get when I'm in bed every night trying to go to sleep.  As you can imagine I'm kind of a whirling dervish underneath the duvet, rubbing here, itching there, eee ooo aaa, can't reach the scratchy little devils!!  And no, there are no bedbugs or other actual nibbly, crawly creatures - it is, quite literally all in my head .. and all over my body.  Nice.  I've got so used to them now that I've affectionately and somewhat derangedly dubbed them my "itchy buggers".

To Itchycoo Park that's where I've been.

What did you do there?

I got high
What did you feel there?
Well I cried
But why the tears there?
I'll tell you why
It's all too beautiful

It's all too annoying

It's all too itchying

It is peculiar that I never really get visitations from the itchy buggers during the day.  I often scratch my face to shreds because I have the sensation of an eyelash or a strand of hair on my skin and no matter how hard I try I can't get rid of it, but that's because there's nothing there.  I think that sensation is probly related, but it is only at night that the formication fun really begins.

You scratch my back, I'll scratch my back and leg and neck and toe...

I've spoken to my GP as to why it is I might be getting formicated and they didn't have many suggestions as to what the cause could be, but they did say that it was a common side effect of drug withdrawal.  Hmmm.  The CFS occupational therapist who took my symptom, one I hardly thought worth mentioning, and gave it a name - told me that it might be liver related but also wondered if it could be caused by something in the blood products I constantly inject.  The former was also the opinion of the Chinese acupuncturist that I saw earlier in the year - she saw the crawling as a sign of a toxic liver.  This made sense to me given the Hep C, the interferon and ribaviron I've had over the years.  However when asking the liver doctors they say my liver results are not too bad and my biopsy 10 years ago showed only mild inflamation.  All good but no suggestions of why I might have this problem or what I could do to solve it.

I got it bad, scratch fever

I'd be interested to know if anyone else with CFS or Hep C has this ant-astic issue.  I'm sure it's related to the treatment or the Hep C but I have no absolute proof or concrete evidence to back this wild claim up.

Well fate can be cruel
Life may be a bitch
But that's not an excuse
For my eleven-year itch

Treatment-wise I am now on a sedative type of drug - Phenegran - to help me sleep and this sometimes keeps the itchiness down to a more tolerable level.  However, having had my dose earlier this evening and having already taken my pain-killers for tonight, the itchy buggers have been fairly active during my writing this post.  Inspiring little blighters.


(Mis-quotes all my own)

CONTAMINATED

Cruel, blood bourne virus

What did they do to deserve you?

Which batches of life saving treatment

Concealed you, left you waiting

To cause your devastation

For years and years and years?

Like characters on a stage

The infected ones play their part

In this real-life tragedy.

Life, death, love, suffering

Is their plot; performance not rehearsed

But delivered with anger and passion.

No producers here; the cast
Of thousands, self-selected, whittled down
To those with energy and drive.
Scene shifters, lighting and stage crew 
Keep this show on the road.
Masking grease paint conceals the hurt.

Already numbed by disease
Each waits to speak their lines.
No first night nerves as they plead
For help to make their lives bearable.
Contamination tortures their minds
As well as their bodies.

Dave calls for justice,
Through letters, emails, talks;
Peter challenges through court;
If his legal aid stops, his case
May be dismissed; already cloaked
In anger, they fight on.

Paul's health brings him close to death,
His chance of life a liver transplant.
Fred waits with him, friendly, supportive,
Although a fellow sufferer, he drives Paul
Ninety miles to hospital.
Life must go on.

Widowed Maureen mourns
Her husband's tragic death,
Remortgages the house for income.
Ros, fatigued and aching from her
Bone-rotting treatment
Waits to find active life again.

Simon speaks of stigma
Suffered by his family.
Cheerfully he continues, with David,
To follow up, research any avenue
Which may open, shed new light 
On this complicated drama.

Their performance fall on deaf ears;
The ever-changing bureaucratic audience
In the best paid seats, listen
Fall asleep, bored by this tangled plot
Of anger and emotion,
Difficulty and hardship.

The players in turn re-think, rehearse,
Soliloquies become entreaties:-
"Won't someone listen, please?
We may be amateurs but
Is our performance not worthy?
Does no-one understand?"

Mouse-Trap like, this show runs and runs.
Never a best seller, the dedicated actors
Replace those dying, as the years
Roll by in agony.
Within a waiting audience a few
Applaud their efforts.

The somnolent bureaucrats slowly wake,
Not altogether ignorant of the facts;
The players wait to hear reaction,
Hoping for a final performance
Of the wrong that can never be righted.
This injustice must be recognised.

And I, like the prompt, sit in the wings
Night after night
Listening to every word,
Waiting expectantly for the final curtain,
The thunderous applause of justice
In recognition of this long running show.




Juliet Batten                   July 2010
Some names have been changed, some are who they are...

Contaminated Blood Demonstration 30-06-2010

This week I attended the Contaminated Blood demonstration in London.  This is my account of the event:

Karen and I and wheely bags.

Train from Kiddy
pork pie and sandwiches.
Change at Smethick
Disappearing train
What the... where d'it go??
Next one appears
Will we make connection?
Two minutes to spare,
cross platform onto London train.
Phew.
Oh no.

Fatality on the line.

Diversion via Stafford
north to go south.

Educate woman on train
She wishes us luck.
Late arrival.

Tube across London

meet Cheryl
bus to Southfields

meal.

Exhaustion.

Up and out
Sun is bright and we are early.

Good journey in

Meet mum and dad at cafe.

Walk to Trafalgar Square

see ship in a bottle on a plinth.

Seemingly hundreds of people

reporters

cameras

busy organised activity.

Donning t-shirts

erecting banners

distributing placards

and we're off...

Snake way down street

get attention from some

Blatant ignore-ance from others.
Walk, limp, wheel.

Hand out leaflets

explaining our cause.

Meet new campaigners,

catch up with friends,
remember too many now gone.

Congregate outside Downing Street

leave room for people to pass.

Would you like a leaflet?

Mostly taken.

Some don't look us in the eye
and walk on -

silence is violence.

Policeman doesn't move us on,

he has haemophiliac son.

Small delegation to number 10

led by Lord Morris

hand in letters and a wreath

representing those we've lost to contaminated blood.

Photos taken

interviews given.

Back on the street
on to the Houses of Parliament.

Problems getting in.

No t-shirts

No banners

No placards

No leaflets
Not allowed.

Remove t-shirts,

put placards and banners in ring-fenced pen,

leaflets stuffed in bag.

Why-ever is this necessary?

Queue in heat
hot
thirsty
tired.

Through security,

very late for meeting

rush to room 4a.

Lord Morris still speaking,

heads popping in and out

"We have booked this room".
Need us out,
Still ours right now.

"Proportion of those infected
who've since died

greater than that of Black Death."
This is our Red Death. 
And still no justice.

Must leave room

mill around in corridor

try to ascertain plan for the rest of the day.

Arrange to meet MP in central lobby

make way there,

wait.

Lots of us
waiting.

MP comes.

Introduce mum, dad and Karen.

He offers tour,

is this time waster?

Seems not, so we accept.

Through into House of Lords
red, ornate, grandeur,

round to terrace on Thames

back into House of Commons

masses of records
floor to ceiling

past library

round back of speakers chair

gargantuan statues of previous PM's.
Good god!

Maggie quite horrific.

Onwards under Bridge Street

through tunnel, like tube station

I say,

and there it is

MP's own private entrance to tube.

Up and out into Portcullis House,
cost millions to build, apparently.

Tea and business.

Explain our situation

stress how long we've been battling governments

and losing friends.

Show him letters

articles written over the years.

He asks what we actually want,

specifics.

Talk about money

on-going support and lump payments,

input into future treatment decisions,
everything in Lord Morris's Bill.

Will he support EDM?

No.

They are government graffiti.

What will he do??

Stresses his support of our campaign,

will attempt to get written question,

asking government to clarify their position.
I will send him the bill and David Cameron's letter.

Mum's a cynic.
Understandably.
I feel quietly optimistic.
I think...

We leave.
Search out others.
Share experiences,
pints,
support.


So much more to do.