Hundreds of hospital patients secretly tested for a killer disease were kept in the dark for up to six years about the results, it was claimed last night. A Journal investigation has discovered that haemophiliacs up and down the country were screened for the hepatitis C virus - but those who were positive claim their health and that of their loved ones was put at risk by a wall of silence. Some were even encouraged to sign waivers that they would not sue the Government for diseases they contracted because of contaminated blood products given to them on the NHS during this time. Now haemophiliacs from Newcastle, North Tyneside, Teesside, Manchester, Kent and Birmingham, have written to the Department of Health, demanding answers and renewing their calls for a public inquiry into the Bad Blood Scandal. They are angry that they were deprived of treatment for years and could have infected their partners because they did not know about their condition. The new revelations only came to light after years of research by North-East haemophiliacs preparing legal action against drugs companies who made blood products which infected thousands of patients with hepatitis and HIV in the 1970s and 80s. Medical records revealed that haemophiliacs were tested for hepatitis C between 1990 and 1992. Even though many tested positive for the disease, most claim they were not told before 1994 and some as late as 1998. In some cases, the first they knew of their infection was when they were issued with holiday letters by their hospital before they could travel abroad. And Peter Mossman, from Manchester, says he only found out when his wife Alison was summoned for a test. Last night he said: "What angers me is that I had no idea the risk I was putting Alison under. Why wasn't I told? "Since 1994 I have seen 10 of my haemophilia friends die from hepatitis C. This is a killer and I want someone to take responsibility for this national tragedy." Chairwoman of Haemophilia Action UK Carol Grayson, whose partner Peter Longstaff is co-infected with HIV and hepatitis C, said last night there had been a "complete breakdown of trust" between haemophiliacs and the medical profession and only a full public inquiry would restore confidence. Ms Grayson said: "I was horrified to discover that haemophiliacs across the UK have been tested for hepatitis C without their informed consent. There are very strict regulations for testing for HIV and hepatitis viruses laid down by the General Medical Council and we believe these rules have not been adhered to." In 1991, a group of haemophiliacs brought a legal case against the Government over their infection with HIV from contaminated blood products sourced in America. A "no-fault" compensation settlement was reached with the Department of Health on the condition haemophiliacs signed a waiver preventing them taking legal action for any future blood-borne viruses including hepatitis C. Ms Grayson claims it is now clear some patients who signed the waivers had already tested positive for hepatitis - but knew nothing about it. "Haemophiliacs were unable to make certain life choices with regard to their health because they were not told the results of their test," she said. "This has far-reaching consequences and those responsible should be made to face a public inquiry." The Department of Health has repeatedly told the Journal that although it sympathised with haemophiliacs and their families, without new information or evidence "no-one's interests would be served" by re-opening the case for a public inquiry. Responding to the revelations about hepatitis C testing, a spokesman for the Department of Health said they were not aware of any complaints, either from individual patients or from the Haemophilia Society. "We would however be happy to look into any complaints if they are raised with us," he said. However, we do not believe that this is grounds for a public inquiry." Guidelines on seeking consent from patients to test for communicable diseases, including hepatitis, were introduced in the late 80s. General Medical Council guidelines state: "You must obtain consent before testing for a serious communicable disease. Some conditions, such as HIV, have serious social and financial, as well as medical, implications. In such cases, you must make sure that the patient is given appropriate information about the implications of the test, and appropriate time to consider and discuss them." The GMC said it had not yet received the letters of complaint and could not comment until then. Dr Mike Laker, medical director for the Newcastle Hospitals Trust which is responsible for the haemophilia centre where Mr Longstaff and many other North-East haemophiliacs were treated, said he was unaware of the issue. "All I can say is that in the early 90s, the test for hepatitis C was quite unreliable," he said. "Those dealing with haemophiliacs knew there were a lot of false positives and my information is that it wasn't until around 1994 that this became accurate." Virus spread mainly through infected blood Facts about Hepatitis C, based on information from the Department of Health. Hepatitis C is a virus that can damage the liver. Unlike Hepatitis A and B, there is no vaccine to protect against hepatitis C. Hepatitis C is carried in the blood and has been detected in other body fluids. But blood (even in tiny or invisible amounts) is the main source of infection. The virus is mainly spread through contact with the blood of a person who has Hepatitis C. You can't catch it through everyday contact. Hepatitis C is passed on by: * sharing equipment for injecting drugs - even if this was a long time ago. * receiving a blood transfusion (before September 1991), or blood products like clotting factors (before 1986). All blood in the UK is now screened. Less commonly, hepatitis C can be passed on by: * a hepatitis C positive mother to her baby before or during birth * unprotected sex with someone who has the virus * medical and dental treatment abroad where unsterile equipment may be used * tattooing, ear piercing, body piercing or acupuncture with unsterile equipment sharing * razors or toothbrushes contaminated with blood from someone who has the virus. Many people who have the virus have no signs or symptoms at all - for years or even decades. But even without symptoms you can still pass the virus on to others. Around one in five people who become infected with hepatitis C will clear the virus naturally. However, most people who become infected remain so for a very long time. Some people can remain well throughout their life, others experience a range of symptoms including mild to severe fatigue, nausea, loss of appetite, depression or anxiety, pain in the area of the liver, mild jaundice, poor memory or concentration. About one in five people will develop severe liver damage (cirrhosis) and in some people, cirrhosis can lead to liver cancer or complete liver failure. A blood test is the only way of knowing you have the virus. Anyone infected with hepatitis C should act to minimise the damage to their liver as quickly as possible by reducing or totally eliminating alcohol from the diet. James's story If he is proved right, James (not his real name) could bring about the landmark victory that changes the lives of infected haemophiliacs across the UK. The 61-year-old from North Shields has discovered that not only was he tested for hepatitis C four years before he was told he had the virus, but that he tested positive before being made to sign the Government waiver which prevented him taking any future legal action. When the HIV litigation was brought in in 1991, the Department of Health agreed to an ex gratia payment on the condition haemophiliacs signed a waiver that would prevent them from taking any further action over "other blood-borne viruses, such as hepatitis", they may contract in the future. But in James' medical notes it reveals he tested positive for the virus in 1990 - and yet he claims the first he knew of his condition was when he was sent for a liver test in 1994. "I feel betrayed and angry but above all I feel tired," he said. "When they told us we had been given HIV by the very treatment that was supposed to be helping us it was devastating - the stigma attached to being HIV positive in the early days was unbearable." James has now written to the Department of Health and the GMC about his case and is seeking legal advice. He hopes fresh evidence that patients were being tested even before the waiver was signed, could open the floodgates for a new wave of compensation claims from over 4,500 haemophiliacs who were infected with hepatitis C. Lizzy's story Lizzy still can't talk about what she and her husband, Mark, (not real names) went through without crying. After more than 15 years their marriage has fallen apart, not because they don't love each other but because of the strains of living with HIV and hepatitis C. "It's ruined my life," says the 39-year-old from Teesside. "Mark was worried all the time about passing on the viruses to me. I couldn't stop thinking about how long we had together. "We were both angry about what had happened and in the end the tensions and pressures have got the better of us. If people had been honest with us it might have been easier but with every turn it seems something else comes to light - it's just unbearable." Mark, 43, tested positive for HIV in 1987. She remembers him saying in 1994 how lucky he was that he didn't have hepatitis C. So when they found out, while trying to arrange a holiday, Mark was positive for HIV and hepatitis C she was devastated. When Mark managed to get access to his medical records a few weeks ago, old lab reports show that he tested positive for the virus in 1992. "All we want is some answers and for someone to say sorry," says Lizzy. Peter's story "All those years I was infected with Hepatitis C and the first I knew of it was when they called my wife for a test," says Peter Mossman, who lives with his wife Alison in Manchester. "Even now I still haven't been officially told that I have the virus. "If it wasn't for the fact that I've managed to get my medical records, to this day I wouldn't know I'd been tested." Unlike the North-East cases, the 59-year-old mild haemophiliac escaped the HIV infection. But he says that in 1985 he contracted hepatitis B and, without his knowledge, was tested positive for hepatitis non A non B - later identified as hepatitis C. He says: "In 1989 I was asked how I was getting on with my non A non B. "It was the first time I'd even heard of the virus - I certainly hadn't been told I had it." Nothing more was said after that. In 1992 he was tested again but Mr Mossman claims it was only when his wife was tested in 1995 that he discovered he was positive for hepatitis C. Tests on his wife were negative. "After 15 years of battling for the truth I'm exhausted," he says. "But I'm determined not to give up. We need a public inquiry." The Journal: Voice of the North | 
