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1,800	18	QUESTION: Your parents were told on more than one occasion that your next infection would in all likelihood be your last? ANSWER: Correct, yes, yeah.
1,801	18	QUESTION: There was -- after your transfer to the Queen 2 Elizabeth Hospital, there was some change in your d rug treatments for the HIV. ANSWER: Yes.
1,802	18	QUESTION: You were moved on to 3TC; is that right? ANSWER: Yes, also known as lamivudine.
1,803	18	QUESTION: You began to see some improvements? ANSWER: I did. I began to see that the -- I think I'd st ill got Candida by that point in my throat and that had started to clear up a little bit. I started to fee l a little bit more well in myself but I think the double combination of the AZT and the 3TC didn't la st that long because they had protease inhibitors comi ng on line at that point as well, the first of which w as ritonavir, and so they put me on that fairly quickl y afterwards as well.
1,804	18	QUESTION: There was an episodes in the late 1990s when you were at home and you had something that was almost like a stroke. ANSWER: Yes.
1,805	18	QUESTION: What can you recall about that? ANSWER: They'd just changed my combination therapy and I think they'd put me on to one called indinavir (Crixivan, I think it was called), and I had only been taking it a day, two days, something like that. My Mum had h ad a friend over so she was quite preoccupied. The 3 friend lived quite a long way away so she was stayi ng over and they were doing whatever they were doing a nd I was kind of left to my own devices and I started to feel very strange. I started to feel tingly down m y left-hand side. Whenever I stood up, I would -- it was like the blood had all rushed from my head and I got dizzy, and that kind of -- those feelings progressed throughout the day until I stood up at o ne point and completely fainted. I collapsed. I don' t know what had happened. I guess I'd just fainted. But at that point, you know, I got my Mum involved and she said, "Well, you know, we think we really need to get you to the hospital", so we went to the hospital and the symptoms were still relatively in the early stage then. I was still having the issue s with my left-hand side and feeling dizzy but it was to get a bit worse and I saw Dr Wilde and he didn't se em particularly concerned and he sent me home. So this would have been mid-afternoon, something like that and then I woke up later that night and m y whole left side was in spasm. This was before I'd had my first hip operation, so every spasm in my left l eg would cause shooting pains up and down my body beca use it was messing with my hips, and so I was crying ou t in pain and so I can't remember whether it was anot her 4 trip in the ambulance or not. It might have been j ust in the car, but we eventually got back to the hospi tal and they admitted me and did CT scans and things li ke that. They couldn't initially find anything and then later on they said they thought it might have been some sort of epileptic issue that manifested as a stroke but that it was quite likely it was caused by the change of drugs, that it was the indinavir that did it.
1,806	18	QUESTION: It took you a while to regain any strength in the left side of your body and hand? ANSWER: Yes, it was a fair old time with rehabilitation a nd, actually, to this day I'm left without much feeling on some parts of my left side but certainly in my fingertips and my hand.
1,807	18	QUESTION: Although the medication that you were by now rece iving was resulting in some improvements in your CD4 count -- ANSWER: Yes.
1,808	18	QUESTION: -- you did experience a number of side effects st ill, brain fog, nausea, headaches and ingrowing toe nail s? ANSWER: Yes, ingrowing toe nails, that was a strange one. I did later find out that that was an issue with on e of the drugs. I couldn't understand it though, all 5 a sudden I was getting ingrowing toe nails and I ha d to have one operated on actually. But, yes, all of the other symptoms were quite prevalent during that time. These were very early combinations. The protease inhibitors in particular were quite full o f side effects, one of which was, ironically enough, exacerbated bleeding in haemophiliacs. So, yes, it was an interesting time.
1,809	18	QUESTION: Now, 1999/2000 you have described in your stateme nt that your health started to level out? ANSWER: Yes.
1,810	18	QUESTION: But you said this in your statement: "The most formative years of my life had been spent in a hospital." ANSWER: Yes, I believe -- yes, that's pretty much exactly it. It was the time when you turned from being a child to an adult. It was the time where you stop being at school, go to university or get a job, and you're supposed to do that alongside all of your peers. Y ou are supposed to get your life experience at that point. It's where you leave the apron strings of y our parents and go and find your place in the world alongside everybody else and that I hadn't done. Everybody else that I'd grown up with had done that. They'd moved on but I was left as almost 6 a 20-year old 16-year old, if you like. I was stil l back at that stage but with nobody then to experien ce those years with.
1,811	18	QUESTION: You signed up for a course with the Open Universi ty because you say in your statement you didn't really know what else to do with your life. ANSWER: I had no idea. I had no idea. I had expected to die. Simple as that. I hadn't expected to be there or a t least I hadn't expected to get better. There was n o plan for the future and there I was, at home with t he prospect of a future and I'd never had it before an d I had not a clue what to do with it. I'd got nobod y to kind of advise me, should I just try to live my life to enjoy as much as I possibly could in case t he virus comes back to bite me? Should I try and plan for some sort of future where I'm alive long-term? Is there a point in doing that? Eventually, the only thing I had to fall back on was the plans that I had before I became ill and I' d planned to go to university and study computer scie nce and that was the closest thing I could think of to do, was to do that Open University course.
1,812	18	QUESTION: But you found that very isolating? ANSWER: It was isolating. I'm not a person that can moti vate themselves very well and it was a lot of dry text. 7 I got through a lot of the modules but eventually I decided that, if anything, this was holding me ba ck more than helping me; so I would try to maybe do something else that would get me out of the rut tha t I was in, get into life a little bit more.
1,813	18	QUESTION: You started some what you described as tiny businesses. You would help people in relation to offering technical support with their computers? ANSWER: Yes.
1,814	18	QUESTION: You would print business cards at home and you ma de a very modest amount from that whilst you were at home? ANSWER: Oh, I had a little cottage industry going in the hospital. You know, I'd got my computer in there a nd people from other wards would come and ask me if I could make them business cards and notelets and things like that, and that's what I'd be doing. I would be designing them on the computer, printing them out, folding them up, cutting them, yes. I didn't get paid for it but it was something for me to do. I think somebody bought me a CD once or something to say thank you. But it seemed that tha t was something that fitted with me. I could still u se a computer no matter what my physical health and so that was the route that I decided to go down. 8 I learnt a lot about computers during that time because there was nothing else to do and once I got out I tried to make the best of that, offering technical support and helping people with stationer y requirements in my very small modest way, yes.
1,815	18	QUESTION: You ended up living in the States then for about 14 months? ANSWER: Yes.
1,816	18	QUESTION: How did that come about? ANSWER: I -- being the nerd, the computery, geeky nerd th at I was, probably still am, the only way that I could think of to get myself out there was through the internet and so I started to seek out online hang-outs, if you like, and I found one that was specifically for people with HIV, and we would chat and various people would come online and offline an d the one particular person stood out to me and she - - we got chatting privately online and I found out th at she had thalassaemia and that strangely enough she' d also -- she was about my age and she'd also been infected with HIV and hepatitis C through her blood . So we got that in common. We didn't have to explain it to each other. You know, we knew what o ur prognosis was. It was an easy thing to fall into a nd we got along so well that I decided to go out there to 9 visit her, which I did in February of 2002. In person we hit it off as well and I stayed out there for a couple of weeks with her and then I cam e home and then I subsequently found out that she'd b een diagnosed with primary pulmonary hypertension , that 's right, and she was quite ill in hospital, so I flew back out there immediately in about the April and I stayed by her side really. She got -- she improv ed from that. It wasn't curable but we decided that w e would try to make the best of the situation and mak e a life for ourselves together, so we did and we got ourselves a place out there and, you know, tried to make the best of the combination of our bad situations, if you like. Then in April 2003 she began to get very ill and we took her into the hospital and it was discovered that she'd got sepsis. She was taken to intensive care. She was Greek Orthodox so the priest was cal led in and she was given her last rites. We expected h er to hold on for another day or so, so I went home to take a break and an hour later we got a phone call to say she had sadly passed away.
1,817	18	QUESTION: Two weeks after that you received a call from you r Mum. ANSWER: Two weeks to the day, on the evening, to say that my 0 Dad who I knew had been in hospital, had also passe d away. So I kind of collapsed with the phone clutch ed to my ear on to the sofa and tried to assimilate th is news. And then it was a case of, immediately almos t, back to practicalities because I'd got a life there that I almost immediately needed to pack up and get out of the United States to go back there for his funeral and that became -- it was a really horrendo us time. It was horrible.
1,818	18	QUESTION: You came back to the UK to support your Mum. ANSWER: Yes.
1,819	18	QUESTION: One of your regrets is because you had overstayed on your American visa you weren't able to go back ther e to see how your girlfriend's family were coping? ANSWER: Yes. I'd had difficulty getting in and out of th e States during that time, partially because of the v isa I had to have in my passport because of having HIV and it being a communicable disease, every trip that I wanted to go on, I had to go down to the embassy in London and wait in line and pay my money and bring my evidence from the doctor and the fact that I could support myself while I was out there and I wasn't going to be a burden on their health system, and th en if I was lucky I would get the rubber stamp and the y would put a visa in my passport and send it on to m e. 1 So there was that to begin with and every time I went into the States they would pull me aside because of that because nobody really knew why. It was the same sort of visa you would have if you had a criminal record and so they were obviously questioning about that. But then as time went on I weighed up the odds and I thought, well, I'll try to stay in the United States to be with her because that's the mos t thing to me at the moment. But I ended up staying beyond the terms of that visa and so I had extreme difficulty in getting back in the last time that I went back in during 2002 and although he let me i n on compassionate grounds, the INS guy with the gun in his holster, I didn't want to chance it again, I didn't think that they'd let me back in and so I felt like I could not go back after that.
1,820	18	QUESTION: Having been infected with HIV, having been infect ed with hepatitis C, in 2001 you received a communicat ion about vCJD. ANSWER: Yes.
1,821	18	QUESTION: What do you recall being told? ANSWER: Initially, it was a letter asking whether or not I wanted to know my vCJD status. I think they'd -- I think it was up to individual hospitals as to 2 whether or not they told people but our hospital to ok it in the way that they would ask people if they wanted to know their status. So I wrote back and s aid yes, I did and they wrote back to me and said, "You have had blood from a donor who later went on to contract new variant CJD".
1,822	18	QUESTION: If we just put up own screen, please, Paul, 12130 06. We can see this is a letter from 24 September 2004, Andy, from your doctor to you. ANSWER: Yes.
1,823	18	QUESTION: It refers to -- the doctor writing to confirm tha t you did receive UK sourced plasma derived Factor VIII between 1980 and 2001? ANSWER: Yes.
1,824	18	QUESTION: "As I had previously informed you in a letter in 2001 you have previously received concentrate from a bat ch that had been contributed to by a blood donor who subsequently went on to develop variant CJD." ANSWER: Yes.
1,825	18	QUESTION: So you had been told that information in 2001? ANSWER: Mm-hm.
1,826	18	QUESTION: It's repeated in this letter of 24 September 2004 and then if we just have on screen please, Paul, 121300 7, not long after that on 1 October you received this letter: 3 "You will recall that I wrote to you in January 2001 informing you that you had previously been exposed to a batch of Replenate UK Factor VIII concentrate that had been contributed to by a donor who subsequently went on to develop variant CJD. A s part of the present risk assessment exercise, the r isk of this particular batch has been reviewed and it h as now been decided it should no longer be regarded as an implicated batch, therefore, it is now considered t hat you have not been exposed to a batch of concentrate that was contributed to by a donor who subsequently went on to develop variant CJD." So for nearly four years you understood that you had been exposed to such a batch of concentrate? ANSWER: Yes, yes.
1,827	18	QUESTION: And then in October 2004 you were told that you h ad not. ANSWER: Yes.
1,828	18	QUESTION: What can you recall about that? ANSWER: Which I suppose was a call for celebration, but I was pretty angry really that they'd let me suffer in th at knowledge, really, that I'd had to contend with yet another threat to my life after all this time, afte r all this rebuilding that I'd done, and I didn't kno w what to believe, you know. They'd said, "Yes, you 4 were exposed. No, you're not exposed", is there go ing to be another letter coming in a couple of weeks saying, "Actually, the last letter was wrong. You' re going to ..." You know, you just don't know what's going to happen. So I really tried to put the whole CJD thing towards the back of my mind. It wasn't something a t that point that I was equipped to cope with.
1,829	18	QUESTION: You'd started, on your return from the States in 2003, you had started doing bits of IT work for the Macfarlane Trust? ANSWER: Yes.
1,830	18	QUESTION: You were creating -- you created a website and a chat room. ANSWER: Yes.
1,831	18	QUESTION: Through that you got to know people and that led to the establishment of the Tainted Blood Organisation ? ANSWER: Yes, that was directly --
1,832	18	QUESTION: Can you tell us about that. ANSWER: Yeah, it was directly as a result of that chat ro om. You know, it was probably the first, apart from the conferences that the Macfarlane Trust and the Haemophilia Society used to organise where people could get together for a weekend, this was the firs t real communication medium that we'd got that would 5 bring people in the same situation together. You know, we could compare stories, we could compare the treatments that we'd had, we could tell each other how we were feeling without judgment, an d it just seemed to me that, because the Macfarlane Trust was for people with HIV only, that the wider community could really benefit from something like this and, you know, we bandied ideas about. There was -- in 2006 there was a large media -- they cottoned on to the story as they do from time to time. We'd had the Observer newspaper follow us fo r several weeks in a row. News outlets had decided t o follow people's stories and get interviews, and we got quite a lot of media that we wanted to have archive d, and so, initially, the Tainted Blood website we cam e up with to kind of put all that into one place, and then followed what I called the blog although it's a bulletin board, like a forum, if you like, and th at started to attract people because of the news that we had had who weren't originally part of the Macfarlane Trust; so people with hepatitis C throug h haemophilia. We didn't know so much about whole bl ood infections back then. So Tainted Blood as a website came about and 6 then as part of my research into it I contacted a solicitor in Manchester through a contact of mine and we looked into judicially reviewing the Government's decision not to call, ironically enoug h, a public inquiry. He said, "Well, if you're going to do that, you're going to need the backing from a lot of peop le, the official backing from a lot of people". So we sent out, through the Macfarlane Trust and the Skip ton Fund, mandates for people to say that we would represent them to a solicitor to say, you know, "We 'll back this judicial review", and floods of these thi ngs came back in and because we put phone numbers on I received a lot of phone calls from people telling their stories to me. And I and another guy who set up Tainted Blood, Gareth Lewis, who is sadly no longer with us decide d to form the campaign group proper. We started up a bank account in both of our names. He as chairma n and me as secretary, and that's how Tainted Blood c ame about really and we started our research and work f rom then on.
1,833	18	QUESTION: You met your wife, your now wife, at a bereavemen t weekend with the Macfarlane Trust in October 2006? ANSWER: Yes. 7
1,834	18	QUESTION: It's Michelle. ANSWER: Yes.
1,835	18	QUESTION: I think you wanted to tell us just a little about Michelle's background and how the two of you came together. ANSWER: Yes. I was at the bereavement weekend for two reasons. I was there because I'd been bereaved fro m my then fiancée in the States, so I'd got the -- I was kind of part of the community but not through that, I was part removed because of the country separatio n, but I'd also been asked there to speak as a delegat e on the campaign and Tainted Blood and she was there because sadly her brother, Andrew, had been in the same situation as me. He'd gotten HIV and hepatiti s C when he was a boy. He died at the age of 24 in 199 6. So again, I guess, there was the removal of that necessity to explain. There was never the elephant in the room about the HIV or the hepatitis C. It was known from the outset, which was amazing. It meant that -- I mean, we saw each other and it was pretty much love at first sight, but it probably would hav e been something that I could not have slipped into, I guess, as easily with anybody else who didn't hav e that knowledge of the background that we'd both bee n through and we could have, for want of a better wor d,8 a normal relationship, and it was amazing.
1,836	18	QUESTION: You married in 2007? ANSWER: Yes.
1,837	18	QUESTION: And you've got three kids? ANSWER: Yes. She was already the mother to my step-daugh ter [redacted] who is 15 now and we, very soon after we got married, decided that we want to try for our ow n kids and so we started to investigate the Chelsea & Westminster's sperm washing process. Sperm washing is an amazing breakthrough but the emotional roller-coaster that we both went through in trying to for our first child was horrendous really . Just thinking back to it, you know, you've got such expectations that this is going to work and then it doesn't work and then it doesn't work again. Each time you're waiting on that pregnancy test and it's negative every time and each time the fund ing that you've been allocated is getting less and less and your chances are running out and we had to appl y for funding a couple of times and, eventually, we r an out of what they call RUI chances and went for our only IVF cycle. So Michelle had to undergo egg harvesting, which meant lots of hormone drugs beforehand and a little bit of an operation to harvest in eggs and then we had 9 the sperm washing for that and then the foetuses we re created and some were frozen and then it was a case of how many viable ones have you got. Everything was kind of fingers crossed, fingers crossed right up until the last moment and the first IVF cycle also failed, and so we decided to pay then for transplantation of one of the frozen embryos and it was a miracle but it worked and we had our daughter through it.
1,838	18	QUESTION: You and your wife and your children, what's the i mpact on a day-to-day basis now, in general terms, of you r illness and infection? ANSWER: I think like my parents tried to do with me I try to put on as brave a face as possible and try to make life as absolutely normal for everybody as I possib ly can. Whatever I'm going through, I will, unless I really can't, I will try and hide it as much as possible so that we can have that normal family lif e so the kids can have a normal childhood. I don't hide it with them. They know that I've been on the TV. I'm not sure they, at least the younger ones, understand quite what for yet. They know that there was something nasty in the blood an d daddy has to take tablets for it every day. I don' t 0 think they quite get the seriousness of what might happen if I stopped taking those tablets. They kno w, obviously, that I went through the horrendous hepatitis C treatment and what that did to me. It almost took away their Dad for a year. But, yeah, I try to make it as absolutely normal for them as possible.
1,839	18	QUESTION: Can I ask you about that hepatitis C treatment. That was in 2013? ANSWER: Yes.
1,840	18	QUESTION: It was triple therapy? ANSWER: Yes.
1,841	18	QUESTION: How did it come about that you entered into that treatment process? ANSWER: My consultant at the liver team, Dr Mutima was qu ite insistent, really, that -- my fibroscan wasn't too bad at that point. I think it was 10.5 or something li ke that, but he said that it had been working its way upwards for quite a long time and that if I didn't have treatment now, at that time, then it could be much harder to treat later on. And the newer therapies were still some way off and so he -- beca use he was quite persuasive I said, yes, I would underg o the treatment.
1,842	18	QUESTION: What was that treatment like? 1 ANSWER: That treatment made me somebody that I wasn't. I t made me angry. It made me anxious. The physical s ide effects were horrendous. Initially for the first 1 2 weeks I was on a drug called telaprevir and I've ne ver been on a drug before that comes with its own help-line and then posting a bottle of Aveeno cream through the post to you every week. They knew how horrendous this drug was and they were doing things to mitigate it. This was a help-line you could phone at any time day or night if you were struggling with t he symptoms, the side effects of the drug. I did once , on one occasion I did phone it and, to be honest, i t wasn't a great deal of use. They said contact your liver specialist in the morning or something. I came out in bright red rashes that was exacerbated by sunlight. You're supposed to take a s well with telaprevir a certain amount of fat with t he pill equivalent to about half a cup of olive oil ev ery time you take it and if you don't take fat with it, it wrecks your lower bowel and colon and I had that happen no matter how much fat I took with it and go ing to the toilet was a horrendous experience. Then the 12 weeks of telaprevir finished. I think that was about three months into it. By th at point, though, I had already become so anxious and was 2 having such severe panic attacks that they decided they'd have to put me on antidepressants. So they put me on, initially, while the antidepressants kicked in, I was on Valium or Diazepam, which didn't really do anything for me. I was curled up on the bed in absolute terror of what was happening to me for about two weeks before the pills kicked in and then the Citalopram that th ey put me on, the antidepressant, started to work and although I was still having the panic attacks they were more manageable. And then they had to up the dose because they were coming back, so obviously so me brain chemistry had changed with these drugs and I don't think that they think that can be changed b ack now because I'm still on the antidepressants so man y years later. But then the interferon and the ribavirin over 48 weeks and it had to be 48 weeks because I'm HIV positive apparently. Had I just had hep C it would have been six months but in their wisdom 48 weeks. By the I time I came out of it I was absolutely wrecke d. From the very early days, I was so tired that even the thought of looking after the kids on my own would s end me -- I'd just burst into tears. I didn't think I could be left alone with them. I wasn't safe to be 3 left alone with them because I couldn't help them i f they needed anything and, at one point, I seem to remember they put it down to migraine caused by the drugs but I completely lost my vision and had to be rushed into A&E. Luckily that came back fairly quickly but just such a scary, horrible life-alteri ng time really and it had an impact not just on me but everybody around me. I don't know how people cope with more than one go at this, I really don't.
1,843	18	QUESTION: You've told us about everything you went through in terms of treatment and illness in the 1990s. ANSWER: Yes.
1,844	18	QUESTION: But you've said about this treatment in 2013: "Taking those drugs caused me to feel the worst I have ever felt in my entire life." ANSWER: Yes, I stand by that, yeah, because I think it wa s -- a lot of it was down to the -- in the days of AIDS I could -- I actually got quite good at being ill, you know, it was almost my thing. I could be ill. I could cope with it. I could get through this because I still had my mental faculties about me an d I -- with the hepatitis C treatment that was remove d. It was completely taken away from me. I had no control and it was horrifying. It was terrifying.4
1,845	18	QUESTION: The treatment did clear the hep c virus? ANSWER: Yes, thank goodness.
1,846	18	QUESTION: Obviously you continue to have to take medication in relation to the HIV -- ANSWER: Yes.
1,847	18	QUESTION: -- for, as far as you are aware, the rest of your life? ANSWER: Yes.
1,848	18	QUESTION: What other ongoing physical effects do you have f rom your illnesses or from the treatments you have received for them? ANSWER: I don't think I'll ever quite recover from the da ys of having AIDS. My chest is not as it should be. I can't put weight on evenly. The HIV drugs have d one something called lipodystrophy to me and so my body shape is very strange. But also, you know, the fatigue has always been ongoing. I don't think my body can control its internal temperature very well so I have to take paracetamol quite regularly just to keep fever down and then I found out in 2014, Christmas time, by way of a fa ll which fractured both of my wrists and my ankle that one of the HIV drugs had caused me osteoporosis as well, and so I've had to be put on to intravenous infusions of a drug called zoledronic acid, which 5 I have once a year which is supposed to fortify the bones but that in itself comes with side effects, o ne of which is fractures, believe it or not, of the ja w bone. I haven't managed -- I've managed to steer clear of that but I've been told that that could be an issue and I can't have any dental surgery because i t won't heal because of the zoledronic acid and that will stay within me for about ten years now. So I mean the osteoporosis itself is something that I have to be aware of every day because of my illnesses my balance isn't particularly good so I'm at quite high risk of falling and so that's something I really have to be aware of.
1,849	18	QUESTION: You received treatment currently from the Royal Orthopaedic Hospital, from Worcester Royal in relat ion to your HIV treatment and the Queen Elizabeth Hospi tal for liver monitoring, endocrinology, dental and haemophilia care. ANSWER: Yes.
1,850	18	QUESTION: You have said this in your statement just attendi ng appointments can be a full-time job? ANSWER: It is. It's a career, yes, absolutely.
1,851	18	QUESTION: You've drawn a distinction in your statement betw een people who were infected at an older age and you ha ve described them as having had their world ripped 6 apart -- ANSWER: Yes.
1,852	18	QUESTION: -- and your own situation and you've put it this way in your statement: "As I've always suffered from medical issues it is simply all I've ever known." ANSWER: Yes.
1,853	18	QUESTION: I wondered if you could tell us a little more abo ut that. ANSWER: I've tried to put myself in the position of someb ody who had grown up with, yes, with, you know, the complications that haemophilia brings but despite t hat being able to create a normal life, and then having this diagnosis placed upon them and having everythi ng that they've known before completely ripped apart. It's difficult for me to do because I haven't had that experience but I can imagine to some exten t how life-destroying that could be; whereas for myse lf, you know, in some ways I think it's been easier for me because it's all I've ever known. I've not known a time really or at least I don't remember a time w hen I didn't have HIV and AIDS, when I, you know, I was n't looking at a lifetime of illness and possibly an ea rly death.
1,854	18	QUESTION: The employment and the financial repercussions of your 7 illnesses have been that you've not been able to establish the career that you would have wanted to establish. ANSWER: Correct, yes.
1,855	18	QUESTION: You do some work, I think, still? ANSWER: Yes. The only way that I've been able to come up with to -- to normalise my working life is to create my own business and the only way I've been able to do that is with the help of somebody else who is in very simil ar circumstances to me. I taught myself web development. He taught himself and at university how to draw, how to illustrate and together we set up a web development company and it's -- it's what we could do. It's no t a career. We understand each other. We know that we're going to be ill. We know that we're going to have time off. We know we can be flexible. We kno w we have to go to the hospital appointments that we' ve got to go to. But it's something to tell people as well, "What do you do?" "Oh, I'm a web developer." Not, "What do you do?" "Oh I sit at home and feel sorry for myself." I had to have that in my life. I couldn't be 8 somebody who, just for outward purposes I had to ha ve it. I had to be somebody who was contributing to society in some way and so that's what we do. We'r e never going to make a lot of money out of it but I at least feel like we're doing something.
1,856	18	QUESTION: You've, in terms of the practical financial arrangements of life, you've looked into the possibility of getting life insurance but, you've p ut it this way in your statement, nobody would touch y ou with a barge pole? ANSWER: Quite right, yes, yes. I mean, "Can you tell us about any of your previous medical conditions?" "Haemophilia." "Oh, yes, okay, we can probably workaround that, yes." "Hepatitis." "Ah, mmm, we might have to take that to our specialist medical assessors and see what we can co me back with." "HIV." "Right ... no, I'm not sure we're going to be able to help you on this occasion, Mr Evans."
1,857	18	QUESTION: You used to be unable even to get travel insuranc e. Now you can but it's very expensive. ANSWER: Yes, I'm hopefully off on holiday later this year . My 9 family have, the four of them, apart from me have managed to get travel insurance for about £30. Min e's come back at about £176.
1,858	18	QUESTION: Can I just ask you next about your experiences in relation to the trusts and schemes, Macfarlane, et cetera. You have made some reference to them already. Just starting with the litigation, the HIV litigation in 1991, you've explained in your statem ent how your parents had to sign a waiver. You wanted, I think, to share a little more information about t hat with us. ANSWER: Yes. So from what I've been told -- and I was no t involved in this in any way, this was one of the things I think they tried to protect me from -- the y were offered as part of the litigation a financial settlement, a scaled financial settlement depending on the circumstances of the victim, and they were told that they would have to sign an undertaking which s aid that they would not take the Government back to cou rt for any -- for the HIV infection or any future vira l infections, and they were also told that this was a circumstance in which nobody would be given the settlement unless everybody agreed to it. It wasn' t something they could check because nobody knew each0 other at the time. She might have been -- my Mum might have been able to talk to other parents at th e hospital and I think probably did, but certainly th e wider community, we had no way of verifying this. So they felt so pressured to sign it that that's what they did. They were absolutely desperate. Th ey thought that people who were possibly in an even wo rse situation than I was, that they wouldn't get any mo ney and they needed that money desperately and they couldn't be the ones to hold that back from them.
1,859	18	QUESTION: This was in about 1991, as far as you know? ANSWER: Yes, yes, 1991.
1,860	18	QUESTION: Were your parents, as far as you know or based up on the discussions you have had with them subsequently , were they given any understanding or any informatio n about the possible risks of infection with hepatiti s C at the time they were being asked to sign that waiv er? ANSWER: No, none at all, as far as I'm aware. The hepatitis -- I think, was it mentioned on the waive r? I think it was mentioned on the waiver but I think that was the first they heard of that particular threat, and the circumstances were that they didn't expect me to live very much longer and so even so I don't know whether that would have been a factor in them, even if they'd known about it, a factor in th em 1 not signing because they didn't expect to have thei r son for much longer and they were just trying to do as much as they could.
1,861	18	QUESTION: What's your experience been of making application s to the Macfarlane Trust? ANSWER: In the early days when I finally found out that t here was a Macfarlane Trust to go and claim from it seem ed fairly straightforward. It was just a case of writ ing them a letter saying, "I need some money for such a nd such", and they would reply with a yes or no. In fact, that was the first application I made from th em was, around the time I was doing my Open University course and they paid for some of that. It seemed much easier to access back then. They didn't have the funding but, you know, if there was a reason behind them saying no, it was because of t hat rather -- or, you know, they would lower the amount they would give you rather than, you know, bureaucr acy as it seems to have come to in the later days, when -- well, maybe in the second to last CEO to the last C EO of the Macfarlane Trust, the bureaucracy around the application process became absolutely unbearable. It was a case of having to justify really your lifesty le to them in order to be able to access any funds by way of an income/expenditure form, so that they could s ee 2 exactly what money you'd got coming in and exactly what money you'd got going out and wh at you spent t hat money on. I know that through previous trustees of the trust have told me, that that column was looked at in detail to see if there was anything particularly frivolous on that outgoings list, in which case the likelihood would be that the grant would be turned down.
1,862	18	QUESTION: You have got to a stage when you just didn't have the energy to apply for any further grants. ANSWER: Yeah, I think I might have done the income/expend iture form twice for different things. I think I was accepted once and turned down once, and then I couldn't face it anymore. I couldn't face this probing to justify the needs that I very clearly ma de clear to them that I had for these funds, and all t hey wanted to do was to probe into my life. I couldn't cope with that anymore and so I just withdrew completely from them.
1,863	18	QUESTION: In relation to the current EIBSS scheme, you've a lso not had the energy to apply for any specific grants -- ANSWER: No.
1,864	18	QUESTION: -- because you think it will result in the same k ind of process? 3 ANSWER: Yes, I'm obviously in contact with a lot of peopl e and people have been through the process and it seems v ery similar to what went on before; so no, I'm not goin g to engage with that.
1,865	18	QUESTION: You do get regular monthly payments and top-up payments from the EIBSS -- ANSWER: Yes.
1,866	18	QUESTION: -- which you have said allow you to sustain a reasonable standard of living? ANSWER: They do.
1,867	18	QUESTION: But you have a particular concern about those payments. ANSWER: Yes. I mean as of late the payments have been increased to a point where I can see myself being a ble to live with some sort of security as someone with what they call the SCM, the special category mechanism, and HIV payments, they are at a level wh ich is probably something we should have had for a long time, but they're there now, but my specific fear i s that the rug could be pulled out from under us at a ny point. There's no guarantee that these payments will last beyond the next spending review and the uncertainty that that creates is very frightening actually. I need to know that when I'm not here 4 anymore that my wife will be okay, and I need to kn ow that my kids will be okay and at the moment I don't know that. I don't know that I can put money aside now to make sure that they're okay because I don't know if it's going to continue and I don't know if when I die they will be receiving anything.
1,868	18	QUESTION: You've made some observations in your witness statement about your medical records. ANSWER: Yes.
1,869	18	QUESTION: You've been told and you've seen references I thi nk to there being multiple volumes of records? ANSWER: Yes.
1,870	18	QUESTION: But what you have received when you've asked for them doesn't appear to add up to the volume that you've seen described. ANSWER: Correct.
1,871	18	QUESTION: You believe that you haven't been provided with a ll of your medical records? ANSWER: I can only assume that that is the case. I remem ber them wheeling them in on trucks, in small trucks, y ou know, in the clinic appointments. There were volum es and volumes, probably a good 4 inches thick each an d I think what I've sent to you does not come anywher e near that amount.
1,872	18	QUESTION: Now, a very important part of your life in recent 5 years has been as you've described in part already, Tainted Blood and providing support for the communi ty of people who have undergone experiences similar to your own. ANSWER: Yes.
1,873	18	QUESTION: Is there anything further you wanted to say at th is stage about that work and how it's impacted upon yo ur life? ANSWER: I think campaigning has been, for me, a crutch up on which I've lent. Once I started to discover the tr uth about what happened in the early days, it wasn't something that I could with good conscience leave behind. Once I started hearing the stories of how people had been affected by this, it wasn't something that I could put aside and move on with my own life and so I threw myself into the campaign really back in 200 6. A few of us did and we've gone hell for leather eve r since, just to try to get -- well, to try to get wh ere we are today really, you know, and -- this is a rea lly surreal experience for me because this is something that I had maybe imagined but never thought would actually come true, that we're sitting here in a ro om with Sir Brian over there and an audience and peopl e watching across the internet, and people are finall y 6 getting to hear what happened in this story. And it's official now. It's not something that people can dismiss as, you know, a bunch of haemos moaning about, well, they got a couple of viruses, so what, nobody was to blame. This is real now and I think that's helped a lot of people. From my experience, since the Inquiry w as announced it's helped a lot of people to come forwa rd and tell their stories because there's not the sham e and the stigma there anymore. And so if -- if this Inquiry has done only that it's been successful already in my eyes and if it goes on then to expose the real truth about what happens, the icing on the cake. I think this is the start of the end for many people and I really, really appreciate being here.
1,874	18	QUESTION: It's very clear from what you said and from your statement that there's been a huge amount of mutual support from people through campaigns and organisations such as the ones you describe. ANSWER: Yes.
1,875	18	QUESTION: Other than that, other than I think you had some support from a social worker at the Queen Elizabeth Hospital who you said in your statement was incredi bly helpful in all sorts of practical ways to you -- 7 ANSWER: Yes.
1,876	18	QUESTION: -- were you or your parents ever offered any form of counselling or other support? ANSWER: No, no form of counselling or support at all. Th ere wasn't a counsellor available at the time we were told. We weren't offered counselling. They weren' t offered counselling. My social worker actually put me -- I was having some issues around anger. I was very snappy and very angry at the time, so I went t o see him, having recognised that this was a problem, and he put me in touch with another charity called Freshwinds who do complementary therapies in Birmingham and they set me up with reiki and goodne ss knows what else, but one thing that they did do was to put me onto a small mindfulness course and that rea lly has been the only thing that's kind of helped with that. But again it's had to be done through the private sector and charities. There's nothing official to support the mental stuff that we've bee n through and there never really has.
1,877	18	QUESTION: Andy, those are the end of the questions I have f or you. Before I ask Mr Snowden if he has anything to add, is there anything further that you would like to 8 add? ANSWER: I did scribble something down. So emotionally coping with all that's happened to me and all that's still going on is difficult. We've spoken about my antidepressants because the hepatitis C treatment altered my brain chemistry. I've no doubts about that. It's not a case that talking therapy because can help. It's physiologic al, but then you have to compound that with the life experience which to date hasn't exactly been smooth sailing. People talk about post traumatic stress disorder and I think for a lot of us that's entirel y appropriate. As far as the antidepressants go, it seems to me that it's almost a decision between crippling anger , anxiety and depression or the levelled out almost non-life that antidepressants bring. My body's been changed by the viruses and all they bring, all the consequences of the treatments, all the damage treating the indirect damage causes and that's bad enough, but I've dealt with that for qui te a long time. I've become good at being ill or disabled or in pain without relief but the one thin g that I've been banking on all that time is this, my mantra, that you may not take -- you may take my bo dy 9 but you must not take my mind. I've maintained tha t all of my life and now it feels that since the hepatitis C treatment that I have even had that tak en away from me and I feel like there's really very little left to take. But speaking for myself and everybody else, you know, we take that little piece of what's left and we put a smile on it and we do the absolute best that we can and sometimes that's enough and sometimes it isn't. So if the Inquiry can even partly understan d that then for me it's been worthwhile. This stands as one of the worse peacetime disasters in the history of the UK because of the number of fatalities alone, but it remains unique a s one that has kept taking for four decades in terms of both life itself and the ability to live. We deserve the truth. History deserves the truth and I have every confidence in this Inquiry t o give us that truth, not only for those of us that a re in this room today but for those that couldn't be, those that have gone before us, for Gareth, [redact ed] the members of the Tainted Blood committee that hav e died since then. They are not here today, so we ar e and I hope this is the end.
1,878	18	QUESTION: Thanks, Andy, I am just going to ask Mr Snowden i f he 0 has anything else. No. Thank you. ANSWER: Thank you.
1,879	19	QUESTION: Robin, you are now 80 years old? ANSWER: Exact, yes.
1,880	19	QUESTION: You've worked all your life as a farmer? ANSWER: Well, I'm retired now but yes.
1,881	19	QUESTION: Previously you were doing dairy farming? ANSWER: I've done the majority of farming, yes.
1,882	19	QUESTION: But all of it was pretty tough, very physical wor k? ANSWER: As a farmer, you're your own boss. The shop's ne ver shut. It's seven days a week.
1,883	19	QUESTION: When you were a teenager you were a very keen rug by player, I think? ANSWER: I've always been keen on rugby, yes.
1,884	19	QUESTION: You played for Gloucester? ANSWER: Until I managed to break the cartilage in my knee , yes.
1,885	19	QUESTION: You then had a very bad accident playing rugby an d damaged your knee? ANSWER: Yes.
1,886	19	QUESTION: Your right knee continued to cause quite a lot of difficulty for you. ANSWER: My knee did, yes, and they had to replace the cartilage or they didn't, they took it out actually , which was the end of my rugby days.
1,887	19	QUESTION: Eventually in June 1991 when you were 52 you unde rwent a femoral osteotomy? ANSWER: Correct.
1,888	19	QUESTION: Can you tell us what that is or what you understo od it to be. ANSWER: What I understood is that the cut the femur in ha lf and twist it around and so that your knee rests on a different place and this resulted in the fact tha t I didn't need a new knee for another 15/20 years.
1,889	19	QUESTION: During that operation you were given a blood transfusion? ANSWER: I understood afterwards that I was told I had had a transfusion, yes.
1,890	19	QUESTION: It's from that transfusion in 1991 that you under stand that you were infected with hepatitis C. ANSWER: I can't think of any other time that it could hav e been. To my knowledge, I don't recollect having ha d another transfusion. I did have other accidents, unfortunately, farming and rugby are fairly dangero us occupations.
1,891	19	QUESTION: Before you were given the blood transfusion, you weren't warned of any risks because you weren't -- it happened while you were being operated on and there was no discussion about that. ANSWER: No, I just knew afterwards, was told afterwards t hat I had been given a transfusion.
1,892	19	QUESTION: After the operation, having been given the transfusion, were you warned of any risks involved in having had that transfusion? ANSWER: No.
1,893	19	QUESTION: After that operation, after the blood transfusion , you carried on working as a farmer? ANSWER: Absolutely.
1,894	19	QUESTION: You didn't notice any particular physical symptom s arising from that blood transfusion? ANSWER: Nothing at all.
1,895	19	QUESTION: You also continued to give blood after the operat ion. ANSWER: I have always tried to give back as much as I can and was certainly a blood donor and continued to do thi s.
1,896	19	QUESTION: You're fairly sure that you continued to give blo od from the date of the operation at least until the look-back exercise in 1995, possibly after that? ANSWER: I think at least until then, yes. I mean, not necessarily on a particularly regular basis but the Transfusion Service used to come to the local town and, you know, notices went up everywhere and those that could went along and gave blood. It was a way of giving something back.
1,897	19	QUESTION: In August 1995, you received a letter from the National Blood Service. What did that tell you? ANSWER: That they were doing what they called a look-back and I was advised to go and see my GP who would try and explain it all to me.
1,898	19	QUESTION: You said you'd never have known you had hepatitis C if you hadn't received that look-back letter. ANSWER: No.
1,899	19	QUESTION: As far as you were concerned, there was nothing o f concern in terms of your physical health? ANSWER: No, nothing whatsoever.

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