Agenda Item 2 HC/S2/06/09/04 18 April 2006 SUBMISSION FROM SCOTTISH HAEMOPHILIA FORUM

airman – Scottish Haemophilia Forum

House of Lords Written Answers – 16 March 2006

NHS: Contaminated Blood Products

Lord Morris of Manchester asked Her Majesty's Government:

Further to the Written Answer by the Lord Warner on 27 February (WA 26), on what dates documents dealing with contaminated National Health Service blood products were destroyed in error in the early 1990s; and [HL4382]

Further to the Written Answer by the Lord Warner on 27 February (WA 26), whether any action was taken after papers used in the HIV litigation were destroyed in error in the early 1990s to prevent further erroneous destruction in the future; and, if so, why that did not prevent the subsequent destruction of papers between July 1994 and March 1998; and [HL4383]

Further to the Written Answer by the Lord Warner on 27 February (WA 26), whether papers relating to any other National Health Service policy areas were destroyed erroneously in the 1990s. [HL4384]

The Minister of State, Department of Health (Lord Warner): The precise date of the destruction of documents on contaminated blood products in the early 1990s is not known.

The Department of Health carried out a major awareness programme on records management in 1993 to 1995, producing new guidance and introducing a departmental records management audit programme. The subsequent introduction of electronic records management to the department has involved further improvements in guidance and support, emphasising the need for careful attention when managing records.

The department has no evidence that records relating to National Health Service policy areas other than blood products were destroyed erroneously in the 1990s.

Sunday Herald – 9 April 2006 Safety fears over plasma products From Judith Duffy, Health Correspondent Production of blood plasma medicines at an NHS facility in Scotland was halted after regulators found many quality control faults, the Sunday Herald can reveal. The Protein Fractionation Centre (PFC) in Edinburgh suspended manufacturing in January following an inspection by the Medicines and Healthcare Products Regulatory Agency (MHRA). It has not yet resumed production. Documents obtained by the Sunday Herald under freedom of information legislation show the MHRA concluded the site was “unsatisfactory for the manufacture of medicinal products, due to the lack of assurance of product quality”. Among the deficiencies listed was a “theoretical” concern that products could be at risk of contamination with viruses by an infected donor . The plasma medicines are still being issued and none has been recalled. The Scottish National Blood Transfusion Service (SNBTS), which runs the centre, insists there is no risk to patients. However, haemophiliacs infected with viruses through contaminated NHS blood products in the 1970s and 1980s said the situation proved lessons from the past have not been learned. Bruce Norval, a haemophiliac from Fortrose, near Inverness, who was in fected with hepatitis C, said he was “disturbed” by the findings of the inspection. “They have learned nothing,” he said. “They killed half of Scotland’s haemo philiacs and there is no learning from that suffering.” MSP Carolyn Leckie, health spokes woman for the SSP, said any plans to privatise the centre, which emerged as a possibility last year, would not help. She added: “Privatising it is just going to remove any accountability altoge ther. It should be invested in. They have known what the problems are for decades, they have just refused to put the money in.” As well as Scottish hospitals, the centre has supplied Turkey, India, Cyprus and Germany in the past year. But according to the MHRA, it has a “poor history” of compliance, with problems first identified in 2004. Among a series of “critical” deficiencies listed in the latest inspection, which took place in January, were weaknesses in protocols for investigating suspected product defects, incomplete training records and job descriptions for key staff and concerns that some practices could cause microbial contamination. The report also notes four instances in 2005 when a negative donation was received by the PFC from a donor who subsequently tested positive for a virus, and that there was no evidence to show these cases were fully investigated.

It adds that there is incomplete assurance that this does not put the product at risk from a “viral load which may be undetectable in the tested plasma pool”. A spokeswoman for the MHRA said that this was raised as a “theoretical” concern and was not based on any actual contamination events. She added: “Recall of product was not done in this case, based upon a risk assessment conducted by the company and reviewed by the MHRA. “This concluded that the theoretical risks were outweighed by the certain harm that would be caused to patients from lack of availability due to recall.” The SNBTS said it expected the centre would resume production in the next four to eight weeks, subject to a satisfactory inspection. The Scottish Executive confirmed that “several options” were being discussed with regard to the future of the PFC, but no decision had yet been made. Health minister Andy Kerr said it was “unacceptable” that an NHS organisation was in this position. “ I have sought assurances that the matters raised by MHRA are being addressed as quickly as possible,” he said.

The Herald – 11 February 2006 When You’re Given Blood You Expect to Live. So Why Have Thousands of Scots Been Left to Die Alone and Ignorant of Hepatitis C? By Eamonn O’Neill At a quarter to three on a cold Tuesday afternoon, the 45-year-old woman slips into her lawyer's office. Two secretaries work the telephones nearby. "Hello, Thompsons, " they sing every minute or two. She sits next to them in silence. She is soon joined by her daughter, and they whisper to each other for a moment before settling back into stillness. The solicitors' offices smell of fresh paint. Glass-fronted rooms - large cubicles, really - greet the two women. They can see other clients inside having soundproofed conversations, like fish gulping for oxygen. After five minutes their lawyer, Frank Maguire - a 6ft 5ins solicitor-advocate - arrives and shows them into the larger conference room nearby. His wide build and almost Olympian arms are in stark contrast to his gentle manner. Ten minutes later, after they have been legally briefed and prepared, I am led into the room and introduced to Agnes Brand, from Dumbarton, near Glasgow, and her namesake 20-year-old daughter. We sit looking at one another in the clinical lighting of the office setting. Both Agneses are pretty and shy. Agnes Snr has taken a bit of time to build up to this encounter with a journalist. What she has to say isn't easy. For the past 20 or more years she has been suffering from hepatitis C. But the labyrinthine world of medicine in Scotland didn't impart this hammer-blow news until just over two years go, so, in a sense, talking about it now is still new and different. Consequently, when she starts to speak, the words flow out like a shamed confession. "In 2002 I started feeling unwell, having headaches and being sick, and my stomach was bloated. I looked as if I was expecting triplets, " she says. "I went to the doctor and at first he couldn't explain it. Then I went back and he felt my stomach and he said my liver was really enlarged and asked if I drank a lot." She glances down at her hands, then begins kneading her knuckles like a baker working knotted dough. She peeks at her daughter - the first of many such glances. Agnes Jnr stares at the surface of the conference table. "I said that I did drink, but not any more than anybody else. So he said they'd send away some blood samples. Then he did some more, and when they came back he said it was hepatitis." The atmosphere in the room is brittle. Secret information - mere testimony

to professionals, but something else for private citizens - is being imparted here. It is the kind of information that changes lives. Eventually the source of Agnes's hepatitis was tracked down to a single event: the birth of her daughter Mhari in 1982. "I had a blood transfusion. The afterbirth had come away and caused a lot of bleeding, and I had to be rushed into theatre to get the afterbirth removed and to get a transfusion as well. They said that was where the hepatitis came from. I was in the Vale of Leven Hospital in Alexandria." She knew she was sick, but this revelation floored her. "I had no appetite, and if I ate something I was just throwing it up. I had headaches and I was tired. I had swelling on my face. I was in a terrible state. I said to the doctor, 'There must be something you can give me for this?'" Agnes's eyes narrow as she speaks. Her hands are rubbed raw. She tightens up in the chair at the memory of her body's state. As she pauses, her daughter's voice jumps in from the other end of the table: "You had blood clots as well, Mum. Remember?" Agnes Snr nods. "That's right. I was waking up through the night choking, and it was big clots of blood. It was terrible. The doctor said it was the hepatitis and the liver disease causing varicose problems in the gullet." Mother looks at daughter; daughter stares at her face and then, finally, at the table again. Agnes Snr looks back at me. She smiles softly and shrugs, as if to say, 'Sorry for my pain.' She starts kneading her hands for the umpteenth time. You and I shouldn't really know anything about Agnes Brand. She was off the official radar. Nobody came to find her to tell her she was possibly suffering from hepatitis C - a blood-borne disease of the liver that can lead to serious damage of the organ and, in many cases, death. More than 80 per cent of those who are infected will progress at some stage to chronic liver disease. But Agnes wasn't tracked down. Only when she became extremely ill and made the first move did her condition come to light. The hepatitis C "scandal" in Scotland has become ubiquitous and almost passe. Like media wallpaper, it has faded into the background of everyday life. It's the medical version of Lockerbie: everybody knows a bit about it, but few know all the details. Most have long forgotten how to get outraged about it, or why outrage is an appropriate emotion in the first place. Instead we worry about bird flu or other nasty pandemics that could wipe us all out. Yet, as you read this, up to 35,000 people could be under serious threat. That's how many people in Scotland are thought to have hepatitis C - and only a fraction of those who have it actually realise they've got it. That's why you don't see many people running down the street screaming. But that's what Agnes Brand feels like doing. "I was crying all the time. I was depressed, " she says. "What have I done to deserve this? That's the

first thing that goes through your mind." The statistics of which Agnes is now a part are a mess. No-one is really sure of anything. But some numbers stand out. As far back as 2002, the British Liver Trust warned that the number of potential victims across the UK could be as high as half a million. And last year the Hepatitis C Trust commissioned a study showing that 18,000 people in Glasgow alone could have the disease. It has been estimated that, by 2035, it will cost the NHS GBP1.6bn across the UK to manage it. Two groups of potential victims emerge through the fog. Firstly, haemophiliacs who were treated with blood products in the 1980s and 1990s to help with clots, and secondly, an unknown number of people who were given blood transfusions during the same timeframe. It's estimated that 5,000 British patients, most of whom were haemophiliacs, contracted some form of hepatitis - of which type C is generally considered the most serious - through blood treatment, and it is believed that more than 1,000 subsequently died from associated liver problems. Many of the 35,000 Scots with hepatitis C will be intravenous drug users who contracted through needle sharing. But many others will be ordinary people; people who unknowingly received blood from the NHS. Some were haemophiliacs being treated with clotting agents; others, like Agnes Brand, received infected blood transfusions. Scotland was not self-sufficient in producing its own blood products until the 1990s. Much of the infected blood was imported from America: inmates in US prisons were paid to donate blood regularly, as were members of the military. It is believed some of the infected blood came from prisoners in British jails - and that some of it was also infected with HIV. Questions have been asked as to when the relevant authorities, such as the Department of Health, knew the products were risky, and how quickly action was taken to safeguard lives. A Scottish Executive report claims the medical community did everything in good faith, and used standard existing practices until effective heat treatment to make the blood safe was introduced in 1987 - some 18 months after it had been introduced in England. Against this backdrop, Agnes Brand knew nothing. She simply didn't realise she was infected. Nor had she any reason to be worried, since she wasn't a haemophiliac or a drug user. Even if there had been a safety net, she'd have slipped through it - although in fact there was nothing. "I started to attend Gartnavel Hospital in Glasgow, " she tells me quietly, "and they were doing all kinds of tests to see how bad my liver was. For 20-odd years I'd been walking about with this disease I didn't know I had." Doctors put her on the drug interferon, which is used in hepatitis cases, but she had a bad reaction and was taken off it. Now she is on experimental

drugs instead, and says she is part of a blind study. She assumes she is being given the real drug rather than a placebo because she has been doubled up with cramps from its effects. "The family still don't like it. But I am trying to find something that's going to help me. And it's not just me - there are thousands of people out there. It's a shame." The sense of understatement is enormous. The Scottish parliament's health committee has considered demands from campaigners seeking a full public inquiry. Frank Maguire is handling hundreds of cases like Agnes's across Scotland. Before giving evidence to the health committee, he told me: "No-one is taking responsibility for this. No-one is taking charge of it and saying, 'This was a disaster and we need to look at it and find out what went wrong, why it went wrong, why we didn't do as much as we should have done, and what we can still do about it.' No-one has done that. That's what an inquiry will do." But when the health committee hearings were held earlier this month, Andy Kerr, the health minister, said he wasn't convinced of the need for an inquiry. He believed it would be costly and pointless, and that after this length of time it would never uncover the full story or bring about "closure" for the victims. It has been alleged that the UK Department of Health knew as early as 1981 of the potential hepatitis risk, but that imported blood was still used. Kerr, however, reiterated what the Scottish Executive had already said: that all treatment was carried out in good faith. As Kerr spoke, Frank Maguire sat with an expression of open incredulity. Andy Gunn, a well-known haemophiliac campaigner from Inverness, said: "I can't listen to this any more, " got up and walked out. After the hearing, Maguire's response to the Scottish Executive's "good faith" line was unequivocal: "It doesn't matter if it was in good faith. You can do anything in good faith and it can be a disaster. You can be a complete idiot and do it in good faith. The question is whether it was negligent or was not best practice. Was as much as possible done to make sure these people were not infected at that time? If you have a situation where people cannot be traced and are not traced - if that's the kind of attitude they have to that position, what kind of attitude did they have regarding the infection in the first place? There's organisational defects in there - passing the buck and running for cover. Did that culture exist which gave rise to hepatitis C infection in the first place?" During the hearings, a Scottish Executive legal official was asked if the people who received infected blood transfusions could be traced in any way. He hesitated, stuttered a little bit, then said: "My understanding is no." At first, says Agnes Brand, she didn't want to tell me her story. Her suffering was private, and she was still struggling to come to terms with what had happened to her. Every morning she looks at both life and death in

the mirror. Just as she was starting to cope with her own condition, another punch was delivered. Her husband, Robert, also developed hepatitis C, through secondary contact with Agnes. "We were frightened to go to the doctors, " Agnes says. So she and Robert, alone and felled by an illness neither of them understood, sat at home and slowly became more ill. Agnes was plagued with self-loathing and guilt because Robert had contracted it from her. "I just wanted to die, " she says. They realised she had probably passed the disease on because Robert, a diabetic, occasionally tested his blood-sugar-reading equipment on her. That prick of the thumb to draw blood would do the trick, she says. But she still hated herself, even though Robert told her not to worry; that it wasn't her fault; that it was just one of those things. She still feels guilty. They'd been together for 14 years, and married for three. "They told me it was life-threatening, " she says. "They told me I could never drink alcohol again. Not even one drink. They said it would kill me. You've got to watch what you're taking: tablets for headaches and things like that, because it might affect your liver. It changes your whole life. It's a horrible experience. Really horrible. You feel dirty." Agnes shrivels when she says "dirty", as if she could have somehow cleaned herself and prevented this situation. "Since my husband died I've got my daughter staying with me, and I won't even keep my toothbrush in the bathroom. I don't want it anywhere near hers. I've been taking it into the bedroom with me. That's the way it gets to you." Agnes Jnr looks up. "She knows it can't be contracted from saliva. But she's always really paranoid." "I just feel really, really dirty, " says Agnes again, forcefully. "Sometimes you just sit down and have a wee cry to yourself and think, 'Have I ever been that bad a person that I deserve this?' That's the stupid thing that goes through your head." She turns to her daughter. "I think I've been a good mother?" Agnes Jnr nods in agreement as her mother keeps talking. "I mean, I have been a good person really, and I don't deserve it. But you've got to think about these things yourself, because if you don't analyse your own life, and tell yourself, 'Well, I haven't done anything to deserve this, ' then you'd break down. It's a horrible, horrible feeling." The room falls silent. Then Agnes tells me that one doctor to whom she was referred spoke to her "like I was trash" and kept his distance "like I was a leper". She suspects he thought she and Robert were drug users. Robert deteriorated rapidly. His stomach swelled up like a football and his mind started faltering too. He'd go into the kitchen for fruit, then inexplicably throw it in the bin. "Eventually he was screaming with the pain, " says Agnes. "He'd have to go to the hospital to get something for

the spasms. But this wasn't parts of his body - this was his whole body." The tears start to fall, but her voice doesn't catch. "I took him home again but I couldn't handle him. It was breaking my heart. He was needing help and he was dirtying himself. He was only 39. When he started dirtying himself, I couldn't get him into the bathroom because he was a big man, even though he'd lost a lot of weight. His mother offered to take him to his family because he had brothers who could help him into the toilet. He was only over there three days and I got a phone call from his mum. She said he was in the hospital, he was really bad. I went to see him and he was lying there like a frail old man." On top of the hepatitis C, Robert was also suffering from an MRSA infection. He was allowed out of hospital a week later and returned to his mother's. His condition worsened again. "I went over and the doctor was there, " says Agnes. "I said I knew Robert was dying and that I'd known before he came out of the hospital. The doctor said, 'We're going to give him some morphine patches, ' and I said, 'What's the point of giving him that now? When he was in all that pain, you wouldn't give him anything.' He died the next morning." It was four days before Christmas last year, 2005. Agnes's face is soaked with tears. She smiles weakly and rubs it with the stub of a hanky. Her daughter sits quietly, obviously distressed. They are only speaking out now to make people understand that it was a routine transfusion, nothing else, that led to Agnes's illness and her husband's death. Some members of their family aren't sure that speaking out is a good idea, but mother and daughter have made up their minds and they're here to do it. The illness is probably too far gone for Agnes to be cured. "I blame the government, " she says, "because it was up to them to call people back and let them know about all of this. But they haven't done it. They've not played their part. They've just let people get sick and die before they discover they've got this. I mean, think about it. If I'd known after it happened, or even ten years down the line, I could maybe have been cured. But that was me only finding out three years ago. So why didn't they come back and tell people?" That's the question Frank Maguire is fighting to have answered. The Scottish Crown Office's own rules, dating from November 1998, state that every death from hepatitis C should be investigated by the local procurator-fiscal's staff. Yet, according to Frank Maguire, this is not happening - and no-one seems able to explain why. Maguire has asked why the deaths aren't being investigated - but so far, he explains, all he has found is "a bureaucratic paper trail". Agnes Brand has received GBP45,000 from the Skipton Fund, a trust set up to

administer payouts to people in her position. In Scotland, that is all she is entitled to by way of compensation. In the Republic of Ireland, payments of GBP350,000 are not uncommon. "I think it's ridiculous. GBP45,000 for my life?" says Agnes. "I think I'm worth a bit more than that. I think everyone that's got it is worth more than that. If someone was to come up to you and say, 'I will give you GBP45,000 and I will take your life, ' what would you do? You'd want your life, not the GBP45,000." Nobody knows how many more Agnes and Robert Brands there are in Scotland - and, at the time of writing, nobody is trying to track them down and tell them they might need help. They are being left to die. Abandoned to become like the bruised woman I meet today. Expected to find their own "closure" without official help. Yet the biggest thing Agnes Brand wants is an explanation of what happened and why. That's all. Everything else is secondary. After the interview ends, Agnes says she hopes people will understand her predicament and not think badly of her. I simply don't know what to say. Then she confides that the only other member of the Scottish public who knew her story until now was another woman from Dumbarton - someone she would meet every so often when she was walking her dog in a park. They weren't friends as such, merely passing acquaintances. But one day Agnes plucked up the courage to tell this lady she had hepatitis C. She's not sure why she chose her, but she did. She reached out to another soul and spilled out her truth. To her delight, the woman wasn't shocked. Agnes told her the problem was the stigma that went with the condition, especially from people who didn't understand it. "Listen, " the woman told her, "those people aren't worth knowing." Agnes smiles at the bittersweet everyday picture in her memory. There they were, two ordinary Scottish women, two relative strangers sitting on an anonymous park bench, sharing secrets and a momentary oasis of common decency in a cold world. They could have been anybody's mothers, daughters or sisters. But we already know that, don't we?

Sunday Times Scotland - August 20 2000 BLOOD TRAIL: BAD BLOOD A blood clotting agent intended to help haemophiliacs had disastrous consequences. Elisabeth Mahoney hears a mother's heart-rending tale of how it cost her the lives of her sons. Philip Dolan, of the Haemophilia Society, says there is clear evidence of negligence. Annie's voice falters only once in the telling of her tale. Her eyes will fill with tears later, but even then, they will do so only for a moment. "I have to be strong," she says, gathering herself to begin again. "That's what mothers do, isn't it?" In the ordinary course of things, yes. But the past decade has been anything but ordinary for her family. Fate has not been kind, you might think, shrugging Annie's story off as a uniquely unlucky sequence of events. Others, knowing her to be just one of many Scottish mothers in a similar situation, would point to a darker explanation involving medical negligence and government disregard. They would call what Annie has to say little short of a disgrace. Of her three children, two were born haemophiliac - her boys, just a year apart in age. She was familiar with the condition, having grown up in a family which suffered from the hereditary disorder. Because the blood is stopped from clotting naturally, a cut can mean bleeding to death, a bruise can lead to deadly internal bleeding. As is so often the case, the women in her family were carriers of the virus, while the men had to live with the condition. She talks of the day-to-day challenges of bringing up two boisterous boys with haemophilia, of being petrified they would hurt themselves. "I remember a doctor telling me to keep them wrapped in cotton wool," she says. "How do you do that with two young boys? I tried to keep them in the house, stop them from going outside where I couldn't keep an eye on them, but they would fight if they were all cooped up." Annie would love to go back to those days, hard though they were. One son contracted the HIV virus after being given a blood transfusion containing the clotting agent Factor 8, widely used in the treatment of haemophiliacs. He died of an Aids-related illness in 1992. Two years later, Annie's other son discovered he was suffering from the incurable virus hepatitis C, contracted from contaminated Factor 8. "My son was very angry after his brother's death, he took it very badly," says Annie. "He hadn't really begun to come to terms with it when the doctors told him about his own condition." It is a tragedy that Factor 8, designed as a life-saving clotting agent, became potentially lethal for haemophiliacs, the very group it could help most. It is still used now, made safe by being heated to 80C. Factor 8 was first produced in a pre-Aids era. It was made up of blood contributions from thousands of untested American donors. It emerged too late for many that Factor 8 was delivering HIV, hepatitis C and other viral bodies straight into haemophiliacs' bloodstreams. In 1984, after a series of medical reports questioning its safety, it began to be heated to 68C. But this still wasn't hot enough to kill off hepatitis C. In 1987,

the temperature was raised to 80C. It subsequently emerged that at least 317 Scottish haemophiliacs had already become infected by hepatitis C. Hepatitis C is a virus which attacks a person's liver to bring about a slow, painful death. It is on the increase in Scotland and passed on in the same way as HIV, but is said to be 10 times more contagious. Yet it has never attracted the same impassioned attention as Aids. While government compensation was set up in 1988 for those who contracted HIV through transfusion and intravenous medication, no such scheme is yet in place for those suffering from hepatitis C. Next month, led by the campaigning Haemophilia Society, the first test cases will go to the English High Court in London in an effort to gain legal redress and compensation for individuals infected through Factor 8. But in Scotland the way legal aid is administered for group cases means Scottish haemophiliacs such as Annie's son are unable to find the funding they need to begin an action. This is a cruel irony, as hospitals in Scotland were the first in Britain to use the clotting agent and continued to process it at dangerous temperatures for at least a year longer than those in the rest of the country. Annie is scathing. "My uncle, who was also a haemophiliac, lived until he was in his 70s without Factor 8, transfusions and all of that." "My sons survived to adulthood. Now, neither of them will ever see that age, because of getting a treatment we were told would help them. It's terribly unfair that people in this situation are being left without anyone they can turn to for help." Dominic Harrison, until recently one of the solicitors involved in the Scottish Solicitors Hepatitis Group, agrees but says nothing can be done until the legal anomaly between Scottish law and the system in the rest of the UK is tackled. "In group actions involving legal aid, all the solicitors representing the individual clients appoint a chairing solicitor," he explains. "In England, this solicitor receives funding to carry out the preliminary stages of the legal action. In Scotland, the legal aid rulings restrict funding to each individual claimant. This means anyone taking on the role of the chairing solicitor has to carry all the initial outlays and then claim them back from the individual firms involved. "This, given the substantial costs we're talking about, is just not workable, not least because you would want to use the pre-eminent people in the different fields. "On top of this, legal aid rates have not been increased for a decade, so firms are working within very small margins. Whoever takes on this case will lose money." Losing money seems like an affordable luxury faced with the life Annie lives in a run-down housing estate on the edge of Edinburgh. It used to be a friendly place, she says, with a sense of community, but that's all gone. The remaining neighbours of old know about her first son's death, but she wouldn't tell the new people moving in. There is such a serious drugs problem in the area that she will not risk keeping her son's medication and syringes in the house between his visits. There's a stigma, she says, wringing her hands all the while, attached to hepatitis C, due to its prevalence among intravenous drug users. The number of people infected with the virus in Scotland has doubled in the past four years

to 10,000 as the country's drug problem has escalated. Experts estimate that another 20,000-30,000 Scots have the condition but are yet to be diagnosed. Most of this is due to drug use, making it easier for people such as Annie's son, who is in his late thirties, to be dismissed as a junkie. "I don't tell anybody about him because there is so much ignorance about his condition," she says. "People think haemophiliacs only get HIV or hepatitis C through drugs. I keep myself to myself, though sometimes I think I'll go mad sat here all alone." It is because of this stigma that we agreed not to identify Annie, which is not her real name, or her son. Scared of reprisals, scared that her son will lose the job he is desperately trying to keep despite his increasing debilitation, scared that she will be shunned by the small community she came from, Annie has kept her family history to herself until now. She has broken her silence in the hope that it might help move on the compensation impasse in Scotland. "Unless people have lived with this, they have no idea of the stress and exhaustion you live under. We don't want compensation for luxuries and there will be no party if we get any money," she says. "My son will need money for when he falls very sick. He is already disabled by his condition; he has to take two painkillers to get to work and two when he gets home. He has panic attacks, he sweats really badly, he has no social life to speak of. I worry all the time that he will do something stupid." Having nursed her first son at her home, Annie is well aware of how draining, emotionally and financially, the illness will become. "The blood gets everywhere - you have to destroy clothes, pyjamas, bed linen, which also get covered in sweat," she says. "At the moment my son's trying to keep his independence by having his own place and cleaning up after himself. He's definitely starting to fade though. I'm worried it's all too much for him. I've been telling him to stop work, but he says he'll go mad if he does that - it takes his mind off what's happening to his body." Annie looks out of the window then says: "If compensation comes through, it will simply mean a better life for whatever time he has left." You can't help but worry how this woman will cope without help when the time comes. To have nursed one son through a fatal illness he should never have had is already a cruel blow for a mother. Her husband died too during this time, six months before her son. "He couldn't take it, watching him die. The stress killed him," she says quietly. It is taking its toll on Annie, who looks older than her years: "I think it's killing me slowly. I'm over the anger now. For a long time I was angry these injections which were supposed to help have taken my sons away from me. I sit here and think: did I bring two sons into the world to die?" It is hard to imagine how Annie answers this for herself, especially when it is claimed medical negligence rather than ignorance comes into the equation. It would be one thing if what happened was nothing more than a terrible accident that nobody could have prevented. It has long been the medical establishment's public explanation that this was the case. But groups such as the Haemophilia Society are challenging this. Their national vice-president and Scottish chair Philip Dolan points to

documentation that the authorities were aware of the problems with Factor 8 as early as the mid-1970s. In 1974, the World Health Organization warned Britian not to import plasma from areas with high factors of hepatitis such as the United States. He also refers to the minutes of a meeting of blood transfusion centre directors from 1980 which made reference to the possibility of contaminated blood in Factor 8. Warnings were given in the US as early as 1972. In 1975, an article in The Lancet suggested using Factor 8 only in life-threatening situations. Dolan calls for the government to acknowledge that something should have been done earlier, a full public inquiry and the establishment of a hardship fund for people such as Annie's son. While Australia, the US, New Zealand, Germany, Sweden and Ireland have set up compensation schemes for Factor 8 victims, this still seems only a remote possibility in Scotland. "At the meetings I attend about Factor 8 I feel I should be rolling my trouser legs up - it's like being at some secret society. When the Haemophilia Society raises the issue in Scotland with health authorities, we are told the matter is now sub judice. It's not," he says. "With government ministers, we are told the results of a Scottish Executive inquiry are soon to be published." The society was told that these results, based on evidence submitted by haemophiliacs during 1999, were due to be published at Easter and then in July. There is still no fixed date, Dolan adds. Time is running out for Annie's son. Before long, all she will be left with are memories of her boys. It's striking how she talks more about them as children than adults. She worries if her son doesn't call each day to let her know how he is. When he visits, she has to move anything he could hurt himself on. She admits this caring role, which she has had to shoulder since her sons were born, can become too much. "I remember when he was little and the coal lorry would come delivering. He loved to jump on the back of it and get carried around. I used to tell him off because it was so dangerous but he wouldn't listen. "Some days I would hear all the neighbours shouting 'he's on the lorry' and just for a minute, I wanted to close my window and not have to worry." Annie's small, airless lounge is crammed full of family photographs: happy ones of her sons, and countless images of her daughter, grandchildren and baby great-granddaughter. The female line in this family has been shaken by loss and tragedy, but none are haemophiliacs. The photographs almost seem to represent a defiant celebration of life by the family in the face of death. It is when she talks about the younger generation of her family that Annie almost can't go on. An anecdote about how her grandchildren can't really remember her son, who died shakes her composure. "He had lost his power of speech, and so the only image they have is of him doing a thumbs-up sign to them," she says. "They were close to their grandfather and his death hit them hard. But they seem wary of my son who's ill now. When I asked the eldest why she didn't want to get too close, she said it was because she knew he would die too. That's terrible."

As if the full force of this hits her only as she says it, her eyes are suddenly full of tears. Then she says a strange thing: if her second son had to contract something she wishes it was HIV rather than hepatitis C. "Nobody seems to know anything about it and there's no help for people like me," she explains. "At least with HIV there were counsellors to talk to. The hepatitis is more dangerous and much more infectious. My other son had phobias about me catching Aids from him when I was nursing him and I can see my other boy going that way too now. But I'll be there for him when the time comes - he knows that."

SCOTTISH GROUPS FORUM 18th February 2006 Dear Ms Cunningham Hepatitis C You will recall when the representatives the Haemophilia Forum met the Health Committee on the 31st January 2006 in my submission I indicated that I had written to the Health Minister Department requesting access to the fifty documents that had not been released. On the 2nd February I received a letter dated the 30th January but franked 31st January. It is to say the least unfortunate the letter was not available for the Committee. The letter states that in order to have access to these documents there would be a charge in excess of £600. This seems to be yet another hurdle given that we operate on limited budget funds being provided by individual members. It also seem to go against the spirit of the Ministers announcement in December that he was fulfilling a promise made to representative of the Forum when we met with him in February 2005. A second point I would wish to raise as you aware during the meeting with the Committee the Irish situation seemed to have had a dismissive response from the Minister and his adviser. Following the meeting with the Committee I wrote to Raymond Bradley the Irish lawyer and he has stated that would be willing to come to Edinburgh and meet the Committee. Given that Raymond Bradley has developed an expertise in dealing with all cases of people infected with Hepatitis C from blood products, anti-D treatment and transfusions I believe his contribution in addressing the submission from the Minister and clarify the points raised by him in the letter provided for the abortive meeting of 10th May 2005. I would appreciate if the Committee could agree to hear from him given that his legal knowledge is recognized internationally. In writing I do not know if you had the opportunity of reading the article in the Herald Magazine on Saturday 11th February. This article re-enforces the points raised by Frank Maguire in his submission to the Committee. I attach a photocopy. Yours sincerely Philip Dolan Chairman – Scottish Haemophilia Forum

SCOTTISH GROUPS FORUM 20th January 2006 Dear Ms Cunningham Hepatitis C I attended the debate that took place on the 22nd December 2005 in the Chamber of Parliament. I would point out that this debate was not initiated by the Scottish Haemophilia Forum as we would have preferred to have had the opportunity meet with the Health Committee to pursue the points that we had submitted to the Committee for our meeting of the 10th May 2005 which had to be aborted. We hope that the members of the Committee will have considered the points raised for our meeting last May and we shall be providing some update to our submission. I understand that additional information and questions have been forwarded for the Committees consideration by two people with Haemophilia and they will be prepared to answer any points raised by the Committee. Frank Maguire from Thompsons wishes the Committee to hear briefly from two of his clients who do not have Haemophilia but have been infected. I was surprised from the debate of the 22nd December to note the comments made by MSPs some who are on the Health Committee which were incorrect. I would hope that Mr. Maguire will be able to respond to those who have suggested bringing of a Test Case to the courts. As was pointed out in the debate this is route that has been consider and was eloquently outline in an article by a leading lawyer in the Sunday Times several years ago who demonstrated why the legal aid system failed people infected from Hepatitis C from undertaking a Class Action case. The Expert Group chaired by Lord Ross recognized the difficulties of the Legal Aid System. As you will be aware we are at the mercy of Government who has the power to block our attempts either via an Independent Public Inquiry or via the court and over the past years has thwarted every attempt to seek an answer. The most recent being in the Court of Session. Two further points perhaps need clarifying from the debate reference was made to the “Hepatitis C Trust” to my knowledge this is body largely seeking the provision of treatment to those infected as the result of life style, we fully support the need for such treatment. However we must distinguish the main difference, this campaign is about those people through no fault of their own were infected as the result of their NHS treatment. According to Lord Robert Winston – a Labour peer and distinguished scientist “this is the worst tragedy in the history of the NHS”. The second point I noted that the Liberal summing up on behalf of his party suggested that the Scottish Executive invest more money to help those

infected. I have written on 6th January to the Leader of that party in Scotland seeking clarification on its policy given that the UK Liberal Party as part of its policy supports an Independent Inquiry to date I await an acknowledgement. Our position remain that there must be an Independent Public Inquiry, to find out why many people with Haemophilia and others receiving blood transfusions have died or are suffering the consequences of their NHS treatment. Yours sincerely Philip Dolan Chairman – Scottish Haemophilia Forum

SCOTTISH GROUPS FORUM 3rd November 2004 Mr. Bob Stock Head of Branch (Blood Transfusion Services & Rehabilitation Equipment) Health Department Directorate of Service Policy & Planning St Andrew’s House Regent Road Edinburgh EH1 3DG Dear Bob, Skipton – Appeal Proposals I refer to your correspondence regarding the proposed Appeal System for the Skipton Fund. I have had the opportunity to speak with a few of our members and have the following observations. As you are aware we have considerable concerns about the relationship between the Skipton Fund and the MacFarlane Trust and their relationship with the Department of Health in London. The following points need to be clarified:

• The membership of the Panel, why a GP rather than a haematologist, given that most of the appellants will have been recipients of blood transfusions or products.

• Generally the majority of patients, seen by hematologists involved the field of Hepatitis C; result from conditions such as alcohol or drugs.

• Will all members of the Appeal Panel be recruited in the same way? • Will the legal members be recruited acknowledging different legal

systems in UK • Will there be recognition that lay members should have an

understanding of the issues and experience of Hepatitis C. • Where will the Hearings take place? • Will the appellant be able to attend? • If the hearings are being held in London will appellants have their

expenses met? • Will the appellant be able to have legal representation and who will

meet the cost? • What expenses will be paid to Panel members and who will meet the

cost? • How will appellants obtain expert opinion to challenge the decision of

the medical panel?

• Will all the documents used by the Skipton Fund in reaching a decision be made available to the appellant?

• Given that Skipton is a Private Company funded by public finance, how will this be monitored? Which Minister in which Parliament will be politically responsible and answerable to the elected members?

Given the limited time I am sure there are other issues and question that will arise in the future. Yours sincerely,

Philip Dolan Chairman – Scottish Haemophilia Groups Forum

SCOTTISH GROUPS FORUM 25th February 2006 Roseanna Cunningham MSP - Perth Convener Health Committee Scottish Parliament Holyrood Edinburgh EH99 1SP Dear Ms Cunningham Skipton Fund You will recall that the representatives the Haemophilia Forum met the Health Committee on the 1st March 2005 during the discussions regards Section 24 of the “Smoking, Health and Social Care Bill” – Skipton Fund. At that time we expressed our concern about the structure of the Skipton Fund given that without consultation with the Haemophilia Society the Department of Health in London made an agreement with the MacFarlane Trust and appointed four of its trustees together with its Chief Executive as Directors of Skipton Fund. Despite the fact that the Scottish Haemophilia Forum and the UK Haemophilia Society registered our concerns about the relationship these were ignored. Recently we have learnt that that a senior member of staff who gave evidence to the Health Committee on the 1st March has been suspended due to irregularities with Skipton Funds accounts. I understand that a figure of about £500,000 is unaccounted. (Ironically perhaps about the amount that it might have cost the Scottish Executive to make payments to the dependents that the Minister refused during the 30th June 2005). I understand that officials of the Minister Department are aware that there is problem but is the Minister? You will recall that since Skipton was set up we have sought to clarify and obtain information regards the Appeal Procedures that was announced with the launch of Skipton in July 2004. In November 2004 we responded to a request to comment on an Appeal system raising several points a copy of this letter is attached. Since 2004 we have endeavored to obtain information as to what was happening regards appeals. From our inquiries to the Scottish Executive it transpired that the Ministers officials were having difficulties in getting a response from their Westminster colleagues. There may also have been communication difficulties between the Ministers themselves. You may be aware that I wrote to Shona Robison in November 2005 requesting that the First Minister be requested to implement an Appeal

System within Scotland given that as the result of the vote on the 30th June the Scottish Executive now had the legal statute to set up an Appeal System. I understand that within ten day of my correspondence the Civil Servant at Westminster stated that they were in the process of implementing the Scheme. To-date details have not yet been made available nor have the advents appeared in the Press. As the result of a meeting with the Chief Executive of the Skipton Fund in December I was informed that the Skipton Fund management did not see any value in having an Appeal System as they could deal with appeals themselves. However, after discussions with the Department of Health they had agreed that any appeals would be treated as a paper exercise. In other words applicants would not have a right to attend! As you will see from my letter to the Scottish Executive we have advocated that any Appeal System should be open and transparent allowing an appellant the right to be present and be represented. The Governments proposals seems to me to be contrary to human rights and deviates from other appeal situations such as Disability, Medical, Employment, Incapacity Appeals or people attending Professional Disciplinary Hearings. I am concerned that yet again the officials in Westminster who were resistant to any financial assistance being given to those infected with Hepatitis C from NHS treatment are now endeavoring to create further hurdles for those who have been refused and are not prepared to have a system that is open and transparent. I look forward to hearing from you. Yours sincerely Philip Dolan