Tuesday, 24 March 2015

Penrose promises ...

Next week is a milestone in the history of the contaminated blood campaign.  It is the publication of the final report from 7 years of hard work put into the Scottish Public Inquiry into Hepatitis C/HIV acquired infection, from NHS treatment in Scotland with blood and blood products.

What does this mean?

Good question.   This is the first and only public inquiry that has been conducted into a scandal that has been continuously whitewashed by previous UK administrations.  This is the first time that comprehensive investigation and examination of the facts surrounding thousands of people being exposed to contaminated blood has taken place.  Other than by campaigners themselves of course and Lord Archer's private inquiry.  Lord Penrose has taken evidence from those directly affected or their surviving families.  He has had the power to call those involved in decision making to give evidence.  His scope has been limited to the events and victims in Scotland but any recommendations made and all lessons and implications for the future that are identified, will have national ramifications.

We have reached milestones before.  The Lord Archer private inquiry.  Pittances offered and inadequate schemes set up.  Debates and votes in the House of Commons.  Reviews of current arrangements announced.  This has been an incredibly difficult journey with many obstacles.  Many of my friends and fellow bleeders didn't make it.  They fell by the wayside, in some cases many years ago, in some cases within the last month; still they fall and the journey isn't over.

What I hope is that this is the final milestone, that this leads us into the last lap and then it will be over.  Tomorrow won't be the end because Lord Penrose can't force action, only make recommendations, but I deeply hope that this is the commencement of the final act.  One thing I truly want is to be able to stop fighting.  To fight no more the authorities, the MPs that betrayed us, the organizations who supposedly represent us and sadly even the victims we are alongside as we are sometimes driven to by the depths of the despair within us.  

I have to admit I'm scared.  I am more optimistic about this than anything that has come before.  I hate that it has taken so long but equally, that length of time gives me hope that the process has been incredibly thorough.  I can't get over how many people have died during the course of this tragedy, how many have been at death's door and crawled their way back thanks to organ donations.  You may not be aware but this is the 15th biggest disaster in terms of death toll in UK history.


You may think by looking at me that I'm fine, that this hasn't really affected me.  I'm afraid as the adage goes appearances can sneak up behind you, tap your left shoulder and smile a cheery hello, whilst pilfering the family jewels from your handbag.  The terrible thing about this contamination is that once the indiscriminate, and in some cases discriminate infection took place, we as patients then faced a Russian roulette as to what happened next. We had no control over any outcome. Who survived, who died was pure chance and something we sleep with every night we survive. Yes, there were treatments but these caused massive problems in themselves and had no guarantees.  Not only do we have this constant fear but our families do too.  Imagine for one moment how you would feel if you had allowed a doctor to inject something into your child which turned out to be full of HIV or Hepatitis C. The guilt is almost unimaginable but this is what the families live with.  If you survive while your friends and family don't, imagine what that does to your already compromised mental health.  I may look fine but I've been unable to work  fully since my Hepatitis C treatment because of the damage it did to my health, I was unable to have children because of the risk of infecting them, I dread the future and expect that one day these multiple viruses will take their toll as I've seen them do to many of my friends. 

I contain the psychological trauma in the main and appear to be dealing with it.  I even convince myself that I am.  Then something tiny will happen, I trap my finger in a clip lock box, I lose the nose pad from one side of my glasses and I cannot contain the eruption of emotion that follows.  I swear, shout, hit things.  I can't help it and asking me to calm down will only make it worse.  Having flipped the nose pad off my glasses in mum's car as she dropped me at the station earlier today, I flipped. As the hail came down I searched in vain for it, then gave up and harangued the ticket machine as I collected my train tickets.  I swore at it and hit it.  Then once mum and dad had gone, the sympathetic look from a man who must have witnessed this outburst was enough to drop me deep into a well of sadness.  I might've cried but it was raining too hard to know.  

Please Lord Penrose lift this weight from our shoulders and hand us a towel.  I long to be able to sit with my remaining friends, toast those who are no longer with us, and say we did it.  We bloody did it.

Sunday, 27 April 2014

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:


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:


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...

Thursday, 17 April 2014

World Haemophilia Day 2014

Hello there and happy World Haemophilia Day!


Whether you're a bleeder or a clotter you may be interested to see this video which I made last week of me having one of my regular clotting factor injections.  As a severe bleeder with type 3 von Willebrand I learned to self-infuse factor 8 aged 14 (26 years ago now) and it revolutionised my life.  I am lucky to find injecting relatively straightforward, most of the time.

I was intending to re-record this today, wearing red, for World Haemophilia Day but instead I'm taking my dad out for a birthday lunch as he was 75 yesterday, so you're gonna see my trial run which I figure is good enough.  Please bear with my efforts as it's the first video of myself I've ever attempted!

I wanted to record and post this to raise awareness of the thousands of women who live with bleeding disorders and also to reach the millions of undiagnosed to encourage anyone who thinks they might have a clotting problem to consult their doctor with a view to getting tested.  

Not everyone has to inject like I am doing, those who are severely affected do and you don't have to do it yourself.  I chose to so I can take my treatment and travel / work anywhere.  I am lucky enough to be able to do this and I appreciate that massively.  Others in less affluent parts of the world do not have access to the most basic treatment.  To find out more about that and how you can help please follow this link:

Save One Life

I hope you enjoy (?) my video or at least find it interesting, and if you're a fellow bleeder or carer feel free to feedback on my technique or sanitary arrangements!  

Funny Blood Jab

I've tried to upload the video but blogger won't let me so I now have my first ever video on YouTube.  Apologies the sound is a bit rubbish - I'm a novice!  Thanks for watching ;)

xx

Thursday, 12 December 2013

Latest letter to my MP

I sent this letter to my MP this week and I thought you might like to read it too. It was based on a template letter put together by the Manor House, Contaminated Blood Campaign and Tainted blood groups, with my own input added.

This is a critical time, it seems, in our long years of campaigning. Lord Penrose is due to report on the Scottish Public Inquiry in the spring next year and it seems support and momentum is swelling.

I am not letting my hopes swell accordingly, though they are getting jumpy. I have had too many disappointments in the past to make assumptions that appropriate action will finally be taken. However you never know and I would love my cynicism to be proved inaccurate. I really would.

"Dear Mr Garnier

I am writing to update you on the important new developments concerning NHS contaminated blood/blood products. This is a crucial, and potentially historic time in which a resolution to the thirty-year campaign for justice may be possible and I appreciate your continued support in pursuit of this.

Alistair Burt MP met with the Prime Minister on November 12th to review the unresolved issues and hear from some of those affected. I have attached his press release following on from that meeting. Feedback was provided to MPs at a meeting of the APPG for Haemophilia & Contaminated Blood on 20th November.

The APPG heard there are significant developments taking place in a bid to bring about closure for all those affected. Described as a positive meeting, Mr Cameron committed to look at the issue and accepted that there are matters that need to be resolved. Two senior officials have been appointed by Mr Cameron to work with Mr Burt and other MPs on identifying a way forward. I have also attached the notes taken at that meeting for your information. I hope you are willing to get involved with this work.

As you are already aware, this matter is of great importance to me. For over 20 years my family and I have been affected by what happened, and these effects are wide-reaching.

I was fully intending in this section to outline the effects contaminated blood has had on my life however I am opting not to go into the minutiae at this point in time. I have always faced the challenges from my medical conditions head on and done my utmost to be positive and live life as best I could, even once infected by contaminated NHS blood products. I am often told I look well and those who know how deeply I've been affected by my infection with hepatitis C both physically and mentally are amazed by how well I cope. I'm going to let you into a secret. I'm not coping. I've found the last few years, since the last government announcement of "help" for the victims of contaminated blood, increasingly difficult. I have anger outbursts that are uncontrollable and frightening. They are usually triggered by my hurting myself in a minor way and result in a loss of control, a fury, and violence that severely upsets me. I asked for a referral to a psychologist last July.

Eventually as that was not forthcoming I pursued this through another route and started seeing a psychotherapist in March of this year. I saw her for 6 months and she has now retired. I am now looking again for some support in this area.

My problem is that I am psychologically at my limit. I have coped with the difficulties caused by my infection with hepatitis C and the subsequent toxic treatment of it. I have managed my feelings of depression and anger over the years. I have dealt with the feelings of utter disappointment where we have been let down by government after government. I live with the difficulties of my poor health and pain every day. Dwelling on this does me no good. I consider myself in a kind of limbo - unable to work, unable to have the family I so desire, unable to do any of the hobbies I love. Waiting for the day when I feel better and knowing that day is more than likely never going to come. And believe me I am a positive person who maintains my sense of hope wherever I can.

We need to move into a bungalow due to my mobility needs. We cannot afford to. Our only realistic option for having a child is via surrogacy. We cannot afford this. If I had a child I would be unfit as a mother unless I had full-time support. We cannot afford this either. If and when I die my husband would be left with nothing because I am not accepted by any insurers for life insurance. When I am struggling and need psychological support I would like to be able to access this immediately rather than applying to a fund which takes weeks, if not months, to decide if they can help with funding for this. None of this would be a problem if I had not been infected with Hepatitis C, if I had not had two lots of toxic interferon treatment which has left me so ill I lost my lucrative career in IT consultancy. I would like this recognised and put right.

I am dealing with the loss of so many things but mostly the loss of my own identity and my future. And please do not forget I am "cured" of hepatitis C in the eyes of the NHS and the government.

I would like nothing better than to forget the hepatitis C. To forget that every day I struggle with the physical and mental effects of being given virus contaminated blood products. I doubt I will ever completely forget but I ask you to do your utmost to ensure that I and others in my position do not get forgotten again, but get the help and support we should have had many years ago.

This is what I would like to happen:

The Skipton / Caxton / MFT needs to be scrapped - they work ineffectively and with little understanding of the nature of the difficulties we are suffering. They could be made to be proactive and help in a much more comprehensive manner but I would prefer them become redundant.

I suggest instead that those of us who received contaminated blood products - irrespective of how we are right now, but instead acknowledging the devastation of infection itself, and understanding and expecting that our problems will only increase in time - be given proper financial support. We cannot get mortgages, cannot get life insurance, do not have pensions, are unable to save. All of this could be solved by a substantial one-off payment and subsequent annual payments.

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 (I'm not sure of the up to date figure) of £375,000 – this payment could be made over three years though it would be better received as a single lump sum.
~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 (again I'm not sure of the exact numbers) I suggest a figure between the average annual wage for a male and female - £28,000 per person infected. I have used the average wages as described on this website:
http://career-advice.monster.co.uk/salary-benefits/pay-salary-advice/uk-average-salary-graphs/article.aspx
This would decrease in line with deaths. This is in line with the amount currently received by the co-infected who meet the stage 2 criteria, as outlined on the Anomalies document I have attached below.
~A payment in lieu of life insurance to be paid to families once an infected person has died, I suggest £250,000.
~Free prescriptions without having to apply for a pre-payment certificate every year and access to private treatment where the NHS cannot provide any care we need in a timely way.

This would enable my husband and I to think about a future together and actually work towards achieving that. It would mean Adrian was looked after in the event of my death. It would mean I no longer needed to rely on my parents who are now in their 70s and would release them from their constant worry. It would give me and my family and my husband our lives back, to some degree. It would mean so much to me.

I am conscious that nothing can bring back those who have lost their lives to the infections, or reverse the long-term health damage for those who survive. However, I believe that if the government were to establish a full and fair financial settlement, along with an acknowledgement of what happened/an apology, then at least we could all find the kind of closure that financial independence would bring.

Finally, I would like to impress on you that the only way this campaign will end, thus enabling people to get on with their lives, will be if this is successfully sorted out once and for all.

In order for this initiative to work I believe it is of vital importance that the affected community is directly involved, consulted and represented fully at every step.

We all need resolution, and we do not need it to be dragged out for any longer than absolutely necessary, but whatever process is employed it needs to reflect the impact on all the affected community and the resultant need that has been created whether from Hepatitis (A, B, C, D, E, G, etc.), HIV, vCJD or other infection.

The time has passed for commissioning endless medical reports and studies, or for politicians – however well motivated – to be deciding what happens to our lives. This hasn’t worked for the last thirty years and it won’t work now.

A wide consultation is proposed but I need involvement and true representation this time, to ensure any exercise that informs a settlement is suitable. Currently, only the victims themselves and campaign representatives, such as Taintedblood, Manor House Group and CBC collectively, have the knowledge to inform this process. Could I therefore ask you to do everything within your power to represent me and the wider community at this crucial stage in the process?

Thank you – I look forward to your reply.

Kind regards,

Ros"

The main feedback I have had so far is that the amounts I've suggested are conservative. There is a balance to be struck between what we believe our lives to be worth and what the government may consider realistic. Do you think I have been cautious? I may revise this with my MP.

Let me know what you think ...


- Posted using BlogPress from my iPhone

Wednesday, 17 July 2013

The Story of the Ankle Op - Pre Op



Early on the morning of Thursday 6 June 2013, having scraped myself out of bed almost before I’d got into it, mum drove me to the Royal Orthopaedic Hospital in Birmingham.  I was due there at 7.30am to have a right ankle arthroscopy and chielectomy.

This procedure would be the joint equivalent of a scale and polish.  My ankle has extensive arthritis from bleeds into the joint when I was growing up.  The joint was steadily deteriorating and after two steroidal injections, aimed at reducing the pain, hadn’t worked, this was the next step prior to the possibility of an ankle fusion.  It seemed I was limping in the direction of a fusion, which would screw the ankle joint into a fixed position removing the pain but almost completely restricting movement, but I wanted to try these two final procedures before saying screw it!  The arthroscopy would clean out the muck in the joint and attempt to smooth off the surfaces of the main two bones to reduce the pain on movement and walking.  The cheilectomy would shave off the bony spurs that had grown on the front face of both of the main ankle bones to try and increase my range of movement.

Many of my haemophiliac friends have had their ankles fused and swear it is the best thing they have done.  I’ve put it off as long as possible because I’m a girl.  Or more specifically: a vain girly girl who has admitted to herself that the lure of a beautiful high heel cannot be denied.  I cannot actually physically perambulate any more, once in said heels, but I love being able to sit and look at a gorgeous pair of pointy heeled feet.  How daft is that?!  Over the last few months of ankle weakness and increasing pain I think I have finally reached the tipping point.  Where pain overcomes stiletto pleasure.  Or wedge pleasure.  Or kitten heel pleasure.  Or platform pleasure.  Anyway, I think I am facing the wall of reality onto which I have fallen due to stupidly high heels and finding that screws and Clarks active air are the way of the future. 

But not quite yet!  This is my final operative fling before signing the consent form to be fused and upon very sensible orthopaedic advice (not just cos I wanted to).  I am having these procedures done in the full and certain knowledge that they may not help and may, in fact, send me quicker down the slope towards fusionville, but on the proviso that there may be some short term pain relief and movement enhancement.  So now you know my somewhat irrational reasoning!

All the preparatory work had been done.  I’d spoken to the haemophilia specialists at the Queen Elizabeth (QE), another Birmingham hospital, to establish the treatment plan.  They’d arranged for me to stay in over night for what was usually a day procedure.  I would be having my clotting factor levels measured pre-op, then receiving 2000 units of Haemate P, then clotting factor levels would be taken post op and another 1000 units of Haemate P administered that evening.  Then the next morning my levels would be checked once more and if they were ok I’d be free to go home, all being well with the ortho docs.  They’d also made the decision to give me some platelets prior to the op.  This was based on previous experience where clotting factor ironically failed to make me clot and platelets had been needed to finish the job.  All this had been arranged with QE blood bank and the Royal Orthopaedic team.

I’d done my prep: legs Veeted, and then epilated to remove the hairs Veet left behind.  I would do it the other way round but the Veet bit loosens them, or so I reckon, and epilating first is inordinately more painful.  Shaving can be like taking razor wire to my legs and I can’t afford to wax on, wax off at the moment.  My toe nails had been naked for a couple of weeks, to get them used to the exposure, and me used to the look of em (not that picturesque if I’m honest).  I’d purchased a new lightweight dressing gown – half price from Sainsbury’s – so I wouldn’t swelter in the undoubted heat of the hospital ward, and slippers that were a touch less manky than my usual ones.  I’d starved myself since before midnight except for the vast quantity of pills and supplements I’m currently on, which I’d swigged with my pint of water at 6am. 

I was ready.  We were ready.

Or so I thought....

To be continued.
 

Monday, 5 March 2012

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





Sunday, 22 January 2012

Funny Blood the book - how to get yours ...



If you would like a copy of my mum's shiny new book Funny Blood - which is about adopting me as a baby, then finding out I had a severe bleeding disorder and the fun that ensued bringing me up - it costs £10.50 plus £2.50 postage (within the UK) if required. Multiple copies will require multiple postage though we may well do you a deal If you ask.

Funny Blood cannot be had from all good retailers I'm afraid as mum has self published. Until of course we hit the best seller list, which may take a while as we've only had 500 copies printed!

You can either send your cheque for the total amount, made out to Juliet Batten, to me:
35 Shrubbery Street,
Kidderminster,
DY10 2QZ
UK
or mum:
28 Franche Road,
Wolverley,
Kidderminster,
DY11 5TP
UK
If you do this please include your name, address and the number of copies you require.

Or if you want to send us a BACS payment please send us an email to roshasfunnyblood@gmail.com with your name, address and the number of copies you'd like and I'll send you the bank account details.

We will then post, or personally deliver if you're local enough, your book.

I will be putting it on Amazon but because mum's funded this herself I'd encourage you to buy direct from us because that way she gets a wee bit more from each book to help pay for the cost of producing it. We might just up the price a touch on Amazon to compensate, not sure yet. I'm dead proud of her I am, cos it's the first book she's ever written and she's been working on it for 8 years :D






Once you've read it we'd really appreciate your feedback.

One last thing - it is about me so I understand if that puts you right off ;)