I was standing yesterday in the central lobby of Westminster under its magnificent 
gold chandelier, flanked by a statue of former prime minister William 
Gladstone, and with the heroic St George looking down on me, one of the stunning paintings which grace this unique place in history.
It was really hectic and there were lots of visitors and staff milling around. The busy reception staff, dressed formally in black tails, had called Eleanor Laing, Shadow Minister for Justice who I had arranged to meet, and I was waiting for her to arrive.
Suddenly, Eric Pickles walked by, and people seized their moment to grab his attention. First he was approached by a student who he listened to, and then congratulated for something or other. Then a middle-aged man I was standing next to limped over to Eric with the aid of two walking sticks, thrust a folded piece of paper into his hand and pleaded: “Will you please read this, it’s my story and I would like you to read it.â€
Eric nodded and started to read it there and then, but the man told him he could do so later. Eric then shuffled off. Intrigued, I asked the man why he wanted to tell Eric his life story, and I am going to share his answer with you.
The man’s name was Steve Nicholls and he is a haemophiliac. He suffers from a blood condition in which an essential clotting factor is either partly or completely missing, resulting in him to bleed for longer than normal, also resulting in internal bleeding into joints, muscles and soft tissues. Haemophilia is a lifelong inherited genetic condition.
Steve’s tragic story was summarised in four paragraphs, describing how he was born with severe haemophilia which made him dependent on NHS blood. If that was not was bad enough, his life took an unwelcome turn for the worse after he was given contaminated blood and contracted Hepatitis C. He was in his 20s and felt crumpled and devastated, keeping his infection a secret because of the stigma attached to haemophilia.
His note describes how over 2,000 people, many of whom were his friends, have since lost their battle for life with HIV, Hepatitis C and VCJD, all blood born diseases/infections contracted, like him, through NHS administered blood transfusions. This mammoth catastrophe took place between the early 1970s and the mid 1980s and has since been described as the worst ever treatment disaster in the history of the NHS by fertility expert Lord Winston.
Steve, who is 42, has a wife and two kids to support and, thanks to a small grant from the Prince’s Trust, gets by working as a washing machine engineer two days a week. He had lost his previous job in local government “out of fear for fellow workersâ€, and he was booted out of the tied accommodation that went with his job.
So our paths crossed in Westminster where I watched him trying to catch the attention of MPs who walked by so he could urge them to support the Contaminated Blood Bill which has its second reading in the House of Commons tomorrow; I wanted to help and was on the lookout for them too. The Bill is due to be heard at the end of the afternoon, certainly not the best day of the week and time of day, but I hope it somehow gets the attention it deserves.
It follows a Private Members’ Bill drawn up by Lord Morris of Manchester, (whose niece is Estelle Morris) and who is president of the Haemophilia Society. He has championed their cause for justice. A two year inquiry was held into the circumstances surrounding the contaminated blood disaster, which left 4,670 people with haemophilia infected with HIV and/or hepatitis C, of which almost 2,000 people have died as a result. It concluded that government procrastination led to thousands of patients becoming infected with HIV and Hepatitis C from contaminated blood, and that the infection of so many people was a "horrific human tragedy".
Lord Archer’s two-year privately funded inquiry was set up after decades of campaigning from victims and their families. His report noted: "The haemophilia community feels that their plight has never been fully acknowledged or addressed."
If 4,670 people had died or been injured in an air disaster, a rail crash, or as the result of flooding, would their families still be seeking justice more than 20 years later?
I hope Eric Pickles has had a chance to read Steve’s story and will acknowledge his suffering. And the same goes for other MPs who Steve and his supporters bumped into or met, including Jeremy Hunt (he is Steve’s local MP and he had a meeting with him), Anne Milton (she was keen to meet the campaigners), Dr Julian Lewis (he discussed this over lunch with one of Steve’s supporters who was a constituent), Lembit Opik, Kate Hoey, and Charles Clarke. There is also an Early Day Motion seeking the support of MPs for the Contaminated Blood Bill.
Ellie, Your twitter feed seems to spill over on to your stories when viewed on Google Crome.
On the story itself, it is a tragic tale. If I was being political I would point the finger of blame at the government of the day …
And it’s about to happen all over again with the retrovirus XMRV that has been isolated in the US (see the journal Science, 9.10.09). UK researchers positively rushed to ‘prove’ that the retrovirus does not exist in the UK – and the DoH have used this ‘evidence’ to state (in writing) that the blood supply is safe from this RV – overlooking the fact that at least seven people from the UK (who sent blood samples to the US in December 2009) have tested positive for it. XMRV has been linked to ME and prostate cancer as well as other neuroimmune diseases and non-hereditary autism. The US government is taking this finding seriously. Why isn’t ours?
What a tragic tale, and how grand that there is a bill to at last address the issue. It makes me grateful for my own blessed life every day. Thank you for telling us about this.
I have been sent this email which Carol has said I can publish here:
Dear Ellee,
I am a haemophilia campaigner and lost both my husband and brother-in-law to HIV/HCV through contaminated blood. Thanks for covering this important issue.
I just wanted to share the following links with you… see below. It is interesting that despite my research on this issue being awarded the Michael Young Prize (it was written prior to the Archer Public Inquiry) for academic research that reaches beyond academia into society, the government still refuses to meet with me to discuss my findings. I have also included a link to a film I made with Newsnight…
http://www.esrc.ac.uk/ESRCInfoCentre/about/CI/CP/societynow/issue4/blood_trade.aspx Michael Young link
http://news.bbc.co.uk/1/hi/health/6562909.stm Newsnight link
http://www.arktimes.com/Articles/ArticleViewer.aspx?ArticleID=3038e9e5-b309-4e6a-92db-8ba15f058fe1 Arkansas Times…blood and corruption
http://www.esrc.ac.uk/ESRCInfoCentre/PO/experts/Health_and_Wellbeing.aspx ESRC “expert” list…scroll down for my details…
The “worst medical disaster in the history of the NHS” (Lord Winston) is also one of the biggst cover ups cross parties over recent years…feel free to pass this e-mail on to any interested politicians that may wish to sign Early Day Motion…538… http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=40113&SESSION=903
I appreciate you writing the article….it all helps to educate people…
It would have been my husband’s birthday today…it was Stephen (his brothers) on the 3rd…so I am pleased they are not forgotten…
Best Wishes
Carol Grayson
Thanks again
Best Wishes
Carol Grayson
c.grayson625@btinternet.com
It’s interesting to compare the treatment of contaminated blood victims here and in France. Senior members of the French government were charged with poisoning, the case dragged on for years and was front page news. As far as I know all the victims have been compensated in full. Over here … silence for years. It’s a tragedy and an injustice – I wish him well with his Bill.
Stephen, the difference is unbelievable. Thanks for your insightful comment.
Excellent post Ellee and the case is just so typical of our incompetent government, if only MP’s spent more time on these issues than feathering their own nests! Pleased that taintedblood.info have picked up your post and sent over so many readers.
Well done – keep up the good work! Perhaps you should spend more time in The Lobby 🙂
Sadly the bill didn’t even get a reading today being number 6 on the agenda. It has been rescheduled for the 26th of Feb; a Friday, again, and no doubt it’ll be as far down the list as possible.
Geoff, thank you!!! And the post has also been given a plug on ConservativeHome website and by Iain Dale today too.
Owen, this is desperately sad news. You must all keep writing and lobbying. Go there every day if necessary!! Spill some blood on the steps of 10 Downing Street to make government take notice!!
Sadly the Bill was objected by whom we as of yet have no idea. We will now have to wait until 26th February. This objection has battered so many people who have been campaigning for over 20 years.
Ellee I love your idea of spilling blood on the steps of 10 Downing Street but think that would probably account to criminal damage. No body wants to get arrested obviously but drastic times call for drastic measures.
Carla, Have you checked Hansard to see who objected? While I wouldn’t want anybody to get arrested, as you say, drastic times call for drastic measures. You need to be creative about the way you ask sometimes…
Are you lobbying the Chancellor too as you need him to cough up!
Fred, belated thanks for your comment too. I’m afraid I don’t know the answer. I hope the medics are following this up.
I am one of the many victims of this tragedy (HIV + hep C) and can only feel that the government will continue to delay justice until all the victims are deceased.
Its a mockery of the justice system.
Ian, have you thought of seeking justice from the European Court of Human Rights?
Information is very usefull,thnx,can’t belive that difference.
Sad to say, but told you so. I believe the second attempt to progress the bill was scheduled at number 11, five further down the list than last time. We have to thank Mr John Spellar for the latest rejection.
Owen, I’m very sorry to hear that. I think you should try the European Court of Human Rights.
THE GOVERNMENT SEEM TO BE A JOKE. I DONT THINK ANYONE WILL EVER SEE JUSTICE WITH THIS GOVERNMENT.
[…] I first wrote about the plight of haemophiliacs four months ago after bumping into some of their campaigners in Westminster’s central lobby when they were meeting with MPs. They now hope to gain the support of Justice Secretary Ken Clark, who was Health Secretary at the time when innocent patients were infected with contaminated blood, imported from the USA by the NHS. Science journalist Susan Watts has done a tremendous job in plugging their plight for the BBC. […]
Anyone who actually remembers the origins of the scandal knows that it was a decision by Wilson’s Labour government to import blood from the USA instead of spending money to build a treatment plant in the UK. Ken Clarke inherited a policy that he could do nothing to change until the Thatcher government invested the money to build a treatment plant (which wasn’t built in a day).
New Labour has spent 13 years ducking the issue because it did not want to admit guilt. You may be luckier with Ken Clarke.
[…] widespread interest. Christine is actively campaigning for urgent improvements to be made for the screening of blood donors in the UK and has called for an international collaboration of blood screening […]
[…] widespread interest. Christine is actively campaigning for urgent improvements to be made for the screening of blood donors in the UK and has called for an international collaboration of blood screening […]
[…] have written about tainted blood campaigners and supported them on my blog after bumping into some of their them in Westminster; I became curious as I watched them approach […]
[…] have also campaigned for tragic hemophiliac sufferers whose lives were devastated after being infected with contaminated blood during routine hospital […]