St Albans tainted blood victim urges government to give compensation
PUBLISHED: 12:00 24 June 2015
She was hit with a ‘bullet’ when just nine years old, but has yet to receive a penny in compensation.
A St Albans mum infected with Hepatitis C after receiving dodgy blood products during a routine operation has urged the new government to have a heart and put right the injustice done to her and other haemophiliacs.
The woman, who wants to be referred to as ‘Nicky’, was one of about 5,000 people infected with Hepatitis C after being given dodgy blood products procured from high-risk donors including prison inmates in the United States.
Prior to the dissolution of Parliament ahead of the general election in May, politicians spoke of the NHS scandal.
But by failing to deliver a strong response by way of either promising an inquiry or offering compensation, they have only added to the misery of haemophiliacs like Nicky.
Newspapers published by privately owned media company Archant, including the Herts Advertiser, have been highlighting the plight of Nicky and others affected by contaminated blood.
During the late 1970s and early ‘80s, she and others were given a new product, factor concentrates, which were produced from blood harvested from the cheapest possible sources.
This included blood known to be from habitual drug users, prostitutes and people with infectious diseases such as HIV and various strains of hepatitis.
As a child, Nicky often suffered from perforated ear drums and tonsillitis, and “was living on antibiotics”.
She adds: “Doctors thought the best option was to remove my tonsils and adenoids. They gave me factor VIII [blood-clotting protein].
“I wasn’t well after the operation. My mum would describe me afterwards as a child who just took to her bed.”
Nicky, 44, explained: “I went from a young girl who loved being out on my bike, horse riding, dancing and all the other things girls do, to being a child who took to her bed.
“I would come home from school and literally go to bed; I was so tired, and my weight ballooned which was really strange as I wasn’t eating much. There was a massive change in my health.
“My mum would take me back to the haemophilia centre at the Royal Free and ask, ‘what have you done to my daughter?’.
“My stomach looked like those of children in Africa - it ballooned. The doctors would say it was just psychological and palm us off.”
A break-through came in a roundabout way when she was having treatment for an ankle bleed in 1995.
Her mum had seen a list of symptoms and signs of hepatitis C in a report on haemophiliacs dying due to being given the infection through factor VIII, and immediately linked it to her daughter’s health problems.
Nicky explained: “I asked the nurse whether I had been tested for hepatitis C. She laughed and replied, ‘Oh you won’t have that’. She got my medical notes and said, ‘Oh dear, you were tested for hepatitis C in 1991 and you were positive’.
“I was shocked. I was tested for HIV and thankfully that was negative.”
She was even more shocked upon finding out, through campaign group TaintedBlood, “that the treatment wasn’t just from one person’s blood, it was made up from 10,000-plus people.”
More than 4,800 haemophiliacs were infected with hepatitis C and 1,200 of those with HIV, many of whom have died from their infections.
Nicky added: “I was a bit, ‘my God, it wasn’t just from prisoners in the US, it was also from prisoners in the UK. They had, to save money, taken blood from people in Borstals.
“I was angry and in disbelief, as no-one had looked after my health.”
Nicky went on: “I had been neglected and forgotten about. I was upset – I thought, ‘you bastards, you’ve known all along and that is how you’ve treated me.
“Doctors knew what was going on. We have been hit with a bullet but the government has washed its hands of us.”
Nicky, who lives in social housing and has worked for 27 years in health and social care, including as a care home manager, has urged the government to give compensation, particularly given the psychological damage to her and others as a result of the NHS disaster.
She added: “It would pave the way to help us live more comfortably, and help our families. I hope there is some kind of justice, although it will never take away what has happened and how we’ve been treated.”
Prime Minister David Cameron has been sent a raft of evidence showing the extent of the contaminated blood scandal, which was known about - and could have been stopped – four decades ago.
On June 3, campaign group TaintedBlood released a 24-page document containing page after page of damning evidence, showing how concerns about the use of hazardous blood products were being swept under the carpet.
TaintedBlood is a voluntary group supporting and campaigning for justice on behalf of those infected and affected by contaminated blood and blood products in the UK.
The evidence, gleaned from information available in the public domain, has been publicly released in the hope of achieving a judge-led inquiry - independent of the Government - into the scandal.
Correspondence dating back to the 1970s between doctors, the Oxford Haemophilia Centre, Blood Products Laboratory, Hampshire Area Health Authority and other organisation includes:
• A letter from Stanford University School of Medicine to the Blood Products Laboratory in Elstree, dated 1975, which warns that at least one source for commercially produced blood products was “100 per cent from Skid-Row derelicts”.
• The author said it was “extraordinarily hazardous” because of a 50-90 per cent chance of recipients developing hepatitis from it.
• He added: “The commercial blood bank attract these kind of donors. Until we understand this problem better, I would hope Great Britain would give some thought to what the purchase of Factor VIII and IX from the United States tends to do … Commercial blood banking perpetuates the high risk rates for hepatitis we encounter with their products.”
• In a letter given in evidence during a recent Scottish inquiry into the scandal, the Department of Health and Social Security was told in 1983 that “a case of the Acquired Immune Deficiency Syndrome in a haemophiliac in Cardiff who had received USA factor VIII was reported”.
• The author added: “I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of [AIDS] transmission by these products has been clarified.”
• In June 1999, evidence supplied by the Haemophilia Society to the Select Committee on Health stated: “Testing people with haemophilia or a related bleeding disorder for both HIV and hepatitis C frequently took place without individual consent.
• “In the case of hepatitis C people were often not informed to their results until several years after they had been tested and then often ‘accidentally’. This delay … prevented people from making active decisions to improve their health and also increased the risks of transmission of the virus to others.”
TaintedBlood says this evidence represents just a small part of the story as, “hundreds of similar documents have been lost, shredded or otherwise held back by the government.
“Britain knowingly imported hazardous blood products and actively promoted their use rather than adequately investing in self-sufficiency and keeping patients on safer products in the meantime.
“If Britain had acted on early indications and warnings it is likely that the country’s haemophilia population would have been protected to a great extent from en masse infection.
“Despite an approximate three-year time lag behind AIDS cases in the USA, doctors in the UK appear to have monitored infection progression for what seems to be research purposes.”
As far as TaintedBlood - and those affected by contaminated products - are concerned, something went drastically wrong with the treatment of haemophiliacs during the 1970s and ‘80s.
The group says that while lives could have been protected, the government and some blood product manufacturers “chose to place financial constraints above human life.
“Such actions resulted in the deaths of thousands of men and women, along with a truly devastating impact on their families.
“This has been compounded by a resistance from government to face up to the truth and afford adequate protection and compensation for the victims they created.”
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