pnadel/npi_all_transcripts · Datasets at Hugging Face

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900	9	QUESTION: I think you put together the fact you were treate d at Oxford, at this particular haemophilia centre by th e these particular consultants, that you were young - - ANSWER: Yes.
901	9	QUESTION: -- so the chances of you having been exposed to anything else were very small? ANSWER: Yes.
902	9	QUESTION: And that you received in this critical period in the early 1980s a very large amount of Factor IX concentrates? ANSWER: Yes.
903	9	QUESTION: And your belief that you've set out in your state ment is you might have been used as a guinea pig to test the effectiveness of the developing processes of he at treatment. ANSWER: Exactly that.
904	9	QUESTION: It's my understanding, Matt, that it's important to you to try and find out if that is the case or not. ANSWER: Yes, of course. I'd like the people or person, i f that is the case, to be held accountable for what they've put me and more importantly my family throu gh.
905	9	QUESTION: You have not pulled the punches in your statement , Matt. You have said you think your parents were li ed to. ANSWER: I can tell you now, hand on my heart, my parents would not have given me that medication if they knew the risks. They enquired about taking me to Wales to g et a different sort of treatment. Later on my Dad loo ked about paying for it himself personally, so there is no way my parents would have given me that medication if they knew the risks.
906	9	QUESTION: There came a point in time in which your parents were told that you had been infected with hepatitis C. ANSWER: Yes.
907	9	QUESTION: If we could have on screen, please, Paul, 1057005 . We can see this is a letter from the Oxford Haemophilia Centre dated 18 June 1990 to a haematol ogy consultant, a Dr Miller, in Milton Keynes and we'll see from the last sentence of that, if you could ju st highlight that, please, Paul, "we found him ...": "We found him hep c Ab positive from a sample taken last September." So we've got this letter June 1990, reference to a sample being taken in September 1989. Your statement says that it was in January 1992 that you r parents were first informed that you had hepatitis C. ANSWER: Correct.
908	9	QUESTION: Were you ever given or were they ever given any explanation as to why there was a significant delay between the testing and the knowledge that doctors had about your infection and your parents being told of your condition? ANSWER: No.
909	9	QUESTION: Do you know whether your parents were even asked to consent to you being tested for hepatitis C? ANSWER: I don't know. I don't believe so.
910	9	QUESTION: In the documents you've seen -- I know you have a sked Oxford Haemophilia Centre to give you what they have -- ANSWER: Yes.
911	9	QUESTION: -- and what we've got, which isn't very much, is all you've been given, as I understand it? ANSWER: Correct.
912	9	QUESTION: Is there anything in the material that you've bee n given which suggests that they were ever asked to g ive that consent? ANSWER: No. I would just like to add it took four reques ts to get this information and I only got that informatio n which is missing documents when Ben, my legal chap, intervened.
913	9	QUESTION: Between September '89 when it looks as though the sample was taken for testing and January 1992, 27 January 1992 is the date your statement gives wh en 0 your parents were finally told you had been infecte d with hepatitis C, would there have been a number of opportunities in that period when your parents were taking you to the haemophilia centre to see the doctors for check-ups and so on for them to have be en told of your diagnosis? ANSWER: Undoubtedly, I was there every other week with bl eeds, et cetera, or even not bleeds for check-ups, so I probably would imagine in that year-and-a-half, two-year period I went there probably 15 times minimum.
914	9	QUESTION: How does that delay in your parents being told ab out the infection make you feel? ANSWER: Angry, upset, more so for my parents. They have a massive sense of guilt on them.
915	9	QUESTION: You have said in your statement that that delay i n your parents being told causes you an enormous amou nt of anger and you've made two observations. One is potentially you weren't being treated properly for the hepatitis? ANSWER: Yeah.
916	9	QUESTION: But also there was a potential risk of others bei ng infected by you? ANSWER: Well, yeah. My Mum used to do my injections. Wh at would have happened if she would have pricked herse lf 1 at that young age. Obviously, it was quite fortuna te my Dad didn't do it because he probably would have pricked himself but, yes, that risk was always ther e and it was always I had the sense of shame and what if I was to infect my Mum or sisters or someone in the house.
917	9	QUESTION: Do you know whether your parents were given any a dvice or information in 1992 about the hepatitis C and it s seriousness and what should be done about it? ANSWER: No, they were told it was essentially just like t he flu, a bad cold, "but you'll get over it, nothing t o worry about", and that was it.
918	9	QUESTION: Your statement suggests that in January 1992 when your parents were finally told about the hepatitis C tha t there was some discussion about you moving on to a higher purity concentrates? ANSWER: Yes.
919	9	QUESTION: But you think that didn't happen until about 1994 ? ANSWER: Correct.
920	9	QUESTION: So again there was a delay in that change in the products? ANSWER: Correct.
921	9	QUESTION: You yourself from about early 1998, by which time you were a young adult, you asked about the possibility of being moved on to recombinant treatments you said i n 2 your statement. ANSWER: Yes.
922	9	QUESTION: You were told what? ANSWER: No. I was too old. I missed the age bracket by a couple of months. I think the reason that I wasn 't put on it was because I had the infection of hep c and there was no point putting me on that because the damage was done and, obviously, it's a cost implication involved, isn't it? I understand the treatment was slightly more expensive and, therefor e, it was no.
923	9	QUESTION: You were being treated still at Oxford? ANSWER: Yes.
924	9	QUESTION: In England? ANSWER: Correct.
925	9	QUESTION: You've made an observation in your statement abou t the different position for patients, as far as you were aware at the time, in Scotland and Wales. What was that difference? ANSWER: That the Welsh people would get it at any age, so my parents enquired about moving to Wales to get me th at better treatment but Oxford said, "If you do that, we'll stop it because that isn't the way it's done" .
926	9	QUESTION: Now, there came a point in time at which a letter was sent to you -- I'm going to ask for that to go up o n 3 screen. It's 1057006. It's a letter dated 20 September 2004 and it provided information about possible risks of vCJD. Do you recall receiving that letter? ANSWER: No, no, I don't. I'm blessed to have an amazing family and my parents hid that from me because they knew that with what I'd been through with haemophil ia and other infections they thought that might push m e over the edge, so I did not receive that. When I went to the Oxford Haemophilia Centre for my next check-up I was informed by a doctor that I had this, that -- I had been told that I am at risk and obviously it wasn't ideal.
927	9	QUESTION: If we just keep this letter up on screen but we g o to the second page, please, Paul, we'll see under what has happened there's a reference to product recalls after donors had been found to have vCJD and then i t says this: "We're writing to you to give you further information about these and about further batches t hat had been made using plasma from donors who later developed vCJD ..." Then over the page, please, "Who is affected?" Top of the next page, Paul, could you just highligh t that. 4 This identified the need for special public health precautions to be taken for many people who had received clotting factors. We can see that from th e bold print. Then if you could just go down the pag e please, Paul, to, "What special precautions should I take", the letter told you this: "You should not donate blood. You should not donate organs or tissues. You should tell whoever is treating you before you undergo medical, surgical o r dental treatment ... it would be best if you tell y our family about this ..." When you finally saw this letter what did you feel on receiving this information? ANSWER: I was really angry because it could have been prevented if I got given the factor earlier on. Th is was all completely preventable, obviously, because I've seen people in the past that have died of hepatitis C and died of HIV. I thought this would be the next wave coming through, people would then be wiped out from that, and it was just a massive, massive mental hit on me.
928	9	QUESTION: If we could just go to the next page, please, Pau l, if you could just highlight the section under "Can I f ind out if I've been treated with an implicated batch", second paragraph, Paul,"If you would like to find 5 out", just highlight that. So this letter said: "If you would like to find out whether you have received any of the implicated batches or you wish to discuss this further with us please indicate this o n the reply sheet." You decided you did want to find out -- ANSWER: Yes.
929	9	QUESTION: -- whether you were just generally at risk as som eone who had received clotting factors or whether there was a more specific and focused risk in your case? ANSWER: Yes. Against my parents' wishes, because obvious ly I had been through enough in their opinion, they sa id, "Look, don't worry yourself with it. What will be will be", but, yes, I chose to find out. In hindsight, probably the wrong thing to do.
930	9	QUESTION: If we look at, please, document 1057007, Paul. This was the request you sent. You wanted a risk assessment to ascertain what risk you were a t from CJD. You wanted to know how many batches you had had and whether or not the risk in increases due to the number of batches you had had. Then if we can go to the next document, please, that's the one, if we could just see the whole text of it. 6 So this is the response you received, Matt and it told you this in the first paragraph: "I know that you are already aware from discussions in the past that you have received batc hes of Factor IX concentrate including material donated from a donor who subsequently developed variant CJD ." Then if we look at the second paragraph you were told that you have been exposed to two batches of t he material. You'd received a total of 20,600 units o f one particular batch in the period February to April 1995 and 10,200 units in the period May 1997 to July 1997, and you were told that the general rule is that the risk of contracting any infection through blood products is related to the total amount of potentially contaminated product. ANSWER: Mmm.
931	9	QUESTION: What did you understand from the information you were receiving? ANSWER: I was extra lucky: I got two hits. So from that, obviously, it caused serious concern and alarm. I spoke to the Haemophilia Centre. They tried to s ay the risk was minimal but I'd heard that before with hep c. I'd heard that before with people with my illness, with HIV, and then I thought automatically I'm going to die. 7 When I was growing up I didn't ever have an issue with passing away from liver or liver illness but this came along and I'd seen people who literal ly lost all their functions. It was like catching Alzheimer's but dying in six months but I couldn't have that for me and I couldn't have that for my parents, but I was convinced in my mind, rightly or wrongly, this was going to kill me because I had se en people pass over from HIV, there was hep c, and now this one came along and I was like, "I'm going to die".
932	9	QUESTION: Have you ever received any more information than what we see set out in letter -- ANSWER: Nothing.
933	9	QUESTION: -- about the nature or extent of the risk you personally may be exposed to? ANSWER: Nothing. I had to chase it. The Haemophilia Soc iety posted on their website about two years ago there w as two cases of sporadic CJD in haemophiliacs, and tha t was posted about two years ago and that sent me ...
934	9	QUESTION: Take your time? ANSWER: That sent me over the edge because at that point I had a little boy who was my life and I didn't want him to see his Dad waste away, so it was quite tough.
935	9	QUESTION: Do you want some water, Matt? 8 ANSWER: Sorry.
936	9	QUESTION: Since 2004 when you received this information, you've lived with the fear and you continue to live with the fear that you may develop vCJD. ANSWER: Yes, every day you fall off balance or you forget something you think it's starting, you think it's starting and it's horrible. I am antidepressant dependent. I can't come off them. It's had a mass ive impact on my life but more so for my parents. It's not been easy.
937	9	QUESTION: You very powerfully said in your statement, Matt, that one of the things that makes you most angry and mos t upset is the impact on your wider family. You've g ot a sister? ANSWER: Two sisters.
938	9	QUESTION: Your parents, you've said for them there's a feel ing of guilt because they allowed you to have the concentrates, given the assurances that they had be en given? 9 ANSWER: Correct, correct. Like I said before, I have an amazing set of parents. I couldn't wish for better parents. I'm blessed. But what I've seen it do to them it makes me feel guilty because it's me that's causing it. Although its not my fault I still feel guilt. My parents have been beset by their only emotional problems, their own mental problems, and it's been -- as it's me affected I think it's been not as bad for me but as a parent now to two amazing bo ys I can't even imagine to begin what they must have g one through. For me, it's tough and if I die, I die bu t it's what happens if I die, the impact on them beca use of the guilt they have, because that could have bee n prevented. I could have been given the recombinant factor, which could have prevented all of that, but I wasn't because of cost. So it's quite tough. But, like I say, the CJD thing was very difficult for me and when the Haemophilia Society posted that on their website perhaps it wasn't the most thought out thing to do, I would imagine.
939	9	QUESTION: Just going back to the hepatitis C infection -- ANSWER: Yes.
940	9	QUESTION: -- I'm going to ask you in a moment about the treatment you had and the effect of that treatment?0 ANSWER: Yes.
941	9	QUESTION: -- but before you had treatment for the hepatitis C, how did the knowledge that you had hepatitis C affe ct the rest of your childhood and your young adulthood ? ANSWER: It's very hard because when I was young, it was - - I was told it's not a big deal, its non-A non-B. I ts just like a cold or a flu. You'll be fine. You'll get on with it but then when you start to go back a nd more and more people were dying from it, obviously, it started to set all of alarm bells and I thought why me? It's like why me and since then I've lost peop le that are close to our family who have been infected and I'm like, "Why is it me that's still alive?" I feel sometimes in my head, why is it -- why am I deserving to still be here when so many others ha ve gone before me and it's a horrible thought.
942	9	QUESTION: Did it affect your schooling? ANSWER: I was tired. My attention span is that of a gnat . I can't sit still. It's -- yeah, can't concentrate . It did affect it massively.
943	9	QUESTION: What about as a teenager and young adult, your behaviour, your emotions, how was that impacted. ANSWER: Yes, my emotions have been impacted massively by this but what caused the most damage was the treatment. I've always been a very affectionate caring person. 1 I had the treatment and that completely changed me. There was a spell for many years I'd go out, I'd ge t arrested. My Dad had to come to the hospital and I was handcuffed to the bed after fighting, getting myself into trouble, completely out of character. But the treatment, I can't describe it. It's awful. It really is horrific. It was for a year a nd it was the worst thing that I've ever been through and it's like I'm taking these tablets, giving myself these injections, why? I haven't done this to myse lf. I haven't caused this. I haven't caused this. Thi s could have been all prevented and the sense of ange r. It doesn't linger so much now because I'm constantly -- I'm always on tablets, so that puts a lid on my anger and emotion but if I don't take m y tablets for three or four days I'm horrific to be around. I'm awful. It's literally like I have got bipolar. I can be the most amazing person and I ca n be the most horrible person and that's not like me and I was never like that before.
944	9	QUESTION: That treatment, there's the treatment for hepatit is C that you began in autumn 2005. ANSWER: Correct.
945	9	QUESTION: What treatment were put on? ANSWER: Ribavirin interferon.2
946	9	QUESTION: In terms of the physical effect of it, how can yo u describe that? ANSWER: Dog-tired, angry, couldn't concentrate, can't sit still. It was just horrific. Constantly like your mind's in a cloud. You can't concentrate. You can 't think straight. You can't focus things probably. It wasn't the best. But, again, I'm lucky because I'v e cleared it. I'm lucky it's no longer here. I'm lu cky I have gone through that. There are many, many people that aren't as fortunate and those people who have lost loved ones , I can't imagine what they have been through.
947	9	QUESTION: But whilst you were having that treatment, you be came very depressed. Your temperament altered in the wa y you described. You decided there was no point bothering -- ANSWER: Correct.
948	9	QUESTION: -- with things because you thought you were going to die? ANSWER: Yes.
949	9	QUESTION: -- and you had suicidal thought thoughts? ANSWER: Big time, yeah, and I even have those thoughts to day. I just still have this immense feeling of guilt ove r me. I have this irrational anger that burns inside me and I don't -- I've driven to the train station on two 3 occasions to kill myself, in fact, because I just thought I can't carry on. But then I don't because I think about my parents and think about my son, an d now my two sons, and I can't do it but, yeah, it hasn't been easy.
950	9	QUESTION: So the hepatitis C virus was cleared by the treat ment? ANSWER: Yes.
951	9	QUESTION: So now the levels of hepatitis C are undetectable is the way in which you have put it in your statement? ANSWER: It's untraceable; so it's gone.
952	9	QUESTION: In terms of physical consequences for your liver, what's the position in relation to that? ANSWER: Got scarring and cirrhosis; so my liver's damaged because of it.
953	9	QUESTION: And you have tests routinely -- ANSWER: Correct, yes.
954	9	QUESTION: -- to keep that under review? ANSWER: Yes. So when I had it, recently one of my liver function tests went very high and obviously I get concerned thinking, "Oh, is this the start of liver cancer? Is this the start of the end for me?" and that's what you think about. If I go to the haemophilia centre -- now I've moved to the Royal Free in London, if I do go there and the blood tests are abnormal, I think I'm going to 4 die. I know it's irrational and I'm probably not a nd I can have a liver transplant, I can clear this, I can get over it but that's the irrational thought that' s there.
955	9	QUESTION: What's the impact of everything you've described, the infection with hepatitis C, the treatment, the effe ct the treatment had on you, and then this fear that overshadows everything in relation to the vCJD, wha t's the impact of that been on your ability to work and maintain your career and to look after your family? ANSWER: So I'm -- again, my Dad has installed a work ethi c in me. He's always worked and I've always tried to wo rk. But I've found a job where I can work from home so I can have a nap in the day. I sleep loads. I'm i n bed every day by half seven -- every day. If I cou ld, I'd be in bed the whole day but unfortunately I hav e to work, I have to provide for my boys and for my partner. So it hasn't been easy. It has been really, really hard and I would be so much better off if I hadn't been through what I've been through. I wouldn't be -- obviously I wouldn't be sat here, but I would be so much better off mentally, emotionally , physically. But it is what it is, isn't it?
956	9	QUESTION: You have had to -- in terms of work opportunities , 5 you've had to, for the reasons you've given, turned down promotions, turned down opportunities to trave l? ANSWER: Yes. I get very, very tired. If I -- because my ankles have been fused and they're arthritic and I got -- I can't lift my elbow because that's gone as well. But, yeah, in terms of going out to meet clients, I'll have a one-hour meeting then I fall asleep on the train coming back, not something you do with someone who's 38. It is hard. You are dog-tr ied all the time.
957	9	QUESTION: One of the things you say in your statement is on e of your many fears is, if something happens to you, is that you are not in a position to leave your partne r and your children financially well cared for? ANSWER: I won't be working by the time I'm 40 I don't fee l. The tiredness, the fatigue, the depression is getti ng worse, so my concern is what happens when that happens. I don't want Naomi to provide for me. I' m the man. That's what a man should do. My Dad has instilled that. He has always gone out and worked. I should provide for the people I love and those peop le that I have made, my two sons.
958	9	QUESTION: What have the effects been in terms of when you a re trying to access other treatment, for example, dent al treatment what's happened then? 6 ANSWER: Yeah, so I went to my dentist some time ago and h e wouldn't treat me because I was exposed to new vari ant CJD. The instruments were too expensive so he said he couldn't treat me. I then probably spent the best part of two or three years to find a dentist who wo uld find me and they wouldn't, so I went to another dentist and I didn't tell him because I had an absc ess in my mouth and it was really, really sore, I mean painfully sore so I didn't tell him. Probably not the best thing, but I had to get the abscess sorted.
959	9	QUESTION: What about when you just go for some of the routi ne treatment that as a life-long haemophiliac you will inevitably have to go to, what happens in terms of the way in which you are treated? ANSWER: So obviously I'm blessed to have cleared the viru s and I cleared that at a young age, but there's massive stickers, danger of infection, risk of infection, I presume about the CJD and it's not good to see wh en people ask what's this about. It's almost like I feel like sometimes that I have been a drug user and that's the perception o f me because I've got this. Obviously when going bac k to the early '80s it was much worse with what was perceived the gay plague but it's still bad for me now. Like I've got amazing family, I've got amazin g 7 friends and I'm very, very lucky but obviously back 20/30 years ago people weren't so forgiving.
960	9	QUESTION: Whenever you do have any kind of procedure you ar e at the end of the list. ANSWER: Oh yeah, yes.
961	9	QUESTION: You are made to feel very aware that you are at t he end of the list? ANSWER: Yes.
962	9	QUESTION: Have you ever been offered any form of counsellin g to deal with the issues that you have identified in te rms of the exposure to infection and risk of vCJD? ANSWER: No, no, none, absolutely none. I've had to -- my Dad when I was younger was desperate to put me on it because I was slowly killing myself so he would pay for it for me but I didn't like it, I didn't like talking about it, I didn't like bringing it up. The reason I'm here today is I want to talk for those people that can't be here. There is someone close to the family who has passed away through an illness and he can't be here so I'm talking partly on his behalf, but partly because this all could have been prevented. My life has been completely dismantled, completely taken apart for something th at could have been stopped and it's just -- yeah.
963	9	QUESTION: You get an amount of regular payment from you, go t 8 some monies originally from the Caxton Foundation a nd now form the EIBSS? ANSWER: Yes.
964	9	QUESTION: What has been your experience of making applicati ons for financial assistance? ANSWER: Caxton Foundation, I can't -- I don't even rememb er applying for it. That money went in a matter of months. I thought I was going to die, so I just spanked it. I was 20. I thought, do you know what , I'm not going to be here, so let's have fun. So that's what I did. Then the other ones, the regular payments, it's you have to go through so many forms. Even though everything is on my records, I am fatigued, I am tired, I can't walk, I do get out of breath, you st ill have to apply. They have my notes and you apply , s end off the forms, you get more information back, it go es on and on and on, and also as well it's just hard applying. I don't feel like I should apply to the Government who, in my opinion, the NHS are the ones that gave me this and I'm asking them to help me fo r what they've given me. It doesn't make sense.
965	9	QUESTION: Matt, those are the questions I had for you. I a m going to ask Mr Stein in a moment if there is any other matter he would like me to raise but is there 9 anything else you'd like to say about your evidence ? ANSWER: The evidence is true. It's all been really, real ly painful. I love my family so much and thank you fo r everything that they've done for me. I know it has n't been easy for you two, and I just hope that some go od can come of this. I hope that justice can be done. I hope the people who are accountable, because in m y opinion there is, are held to account and this is never repeated. This is never repeated. I don't want the people in this room, their families to go through what I've been through. I don't want any other haemophiliac to have to die or to go through the pain I have been through, or anyo ne else for that matter. We are a very, very rich nation. People should not be put behind profit from pharmaceutical companies. It should be about preserving people an d life and I just feel that the people, the poor peop le that I was speaking to last night at the hotel and the poor people in this room that have lost loved ones, it breaks my heart. I'm lucky I'm here, I've cleared hep c, I'm okay. Obviously, I'm damaged. I'm irreparably damaged but there are people that have lost people that they love and as a parent now I can only feel 0 nothing but pain and sorrow for them, but yeah.
966	10	QUESTION: Fiona, you were diagnosed with von Willebrand's disease at the age of 4. ANSWER: Yes, I was.
967	10	QUESTION: And your mother had been told what you could and couldn't do? ANSWER: Yes.
968	10	QUESTION: So lots of your childhood activities were restric ted? ANSWER: They were, yes.
969	10	QUESTION: As an older child, a young teenager, you had some issues with your teeth. Can you tell us what was wrong. ANSWER: Yes, I can. I wasn't -- I had an overcrowded mou th and so I had lots of teeth. Some of the front teet h were pointing out forwards and they had been for li ke most of my young life, unfortunately because of the von Willebrand's disease no dentist was willing to remove any of them for fear of haemorrhage.
970	10	QUESTION: What impact did that have on you as a young perso n? ANSWER: It was horrible and I used to have the mickey tak en out of me at school constantly. It bothered me far more than von Willebrand's disease as a young perso n because it's so important to try to fit in and feel like everybody else and I looked quite different to everybody else. I also couldn't have my tonsils ou t and that meant that I was regularly off school for weeks at a time. I used to pretend my tonsils were worse than they were for longer than they were because I did n ot want to go to school because my teeth poked out forwards. You actually could see that the bottom o f the tooth instead of the front of the tooth.
971	10	QUESTION: But when you were about 16 in October 1981 you ma naged to persuade a dentist to refer you for treatment. ANSWER: I did, yes. I'd already removed the front ones myself. I remove them one night with a tin of talc um powder and my father's pliers. I was distraught by the look of them and had been for years and I -- my mother still wouldn't ag ree to helping me to have them removed. My mother was wonderful, is a wonderful, wonderful lady but she w as so worried about anything happening to me or my sister, because my sister was also diagnosed with von Willebrand's disease, that she wouldn't agree t o me having anything done about them so I did it myse lf one night. I arrived in her bedroom with blood running down my face and the talcum powder in one h and and the teeth in the other, very proud of myself, y es.
972	10	QUESTION: By 16, October '81, you had managed to persuade t he dentist to refer you -- ANSWER: I did.
973	10	QUESTION: -- for full treatment? ANSWER: Yes.
974	10	QUESTION: What were you told was required? ANSWER: That they were going take some teeth out from rou nd the back then I could go forward and have braces fitted, et cetera, to have the teeth straightened a nd moved around.
975	10	QUESTION: And to have that procedure, you were told you wou ld need Factor VIII? ANSWER: Yes.
976	10	QUESTION: When there was the discussion about having the Factor VIII for the dental procedure, we re you warned of any risks in receiving it? ANSWER: No, no risks.
977	10	QUESTION: You received the Factor VIII both before and afte r the surgery? ANSWER: I did.
978	10	QUESTION: And then you didn't receive any blood products fr om that point in time until you were diagnosed with hepatitis C, did you? ANSWER: No, I didn't.
979	10	QUESTION: As an adult, you were diagnosed with thyrotoxicos is, excess thyroid hormone. ANSWER: No, I've got an under-active thyroid.
980	10	QUESTION: Sorry, under-active thyroid? ANSWER: Yes.
981	10	QUESTION: You had some problems with your knees? ANSWER: Terrible swelling of the knees which regularly required a fluid to be removed and cortisone injections to be inserted into the knees. It went on for years and still to this day sometimes I do have treatment on my knees.
982	10	QUESTION: But apart from that you were generally well in yo ur early adulthood? ANSWER: Yes, generally well.
983	10	QUESTION: In 1985 when you were pregnant with your eldest daughter you were tested for HIV. ANSWER: I was.
984	10	QUESTION: And it was negative. ANSWER: It was.
985	10	QUESTION: Why were you tested at that point? ANSWER: I had had a fairly normal pregnancy and I had got to 38 weeks pregnant when my mother, who was at the ti me a senior midwife and ran the antenatal clinic at ou r local hospital, contacted me to say, "I needed to s ee you". I was, "Oh okay, Mum, any time", and she sai d, "No, it's quite official but I'll come to you". Sh e came to our house and she said, "I need to do a blo od test", and I said, "Oh, okay then", and she said, "Darling, you need to understand that your consulta nt has picked up that in your notes you had been given a product that could mean that you had contracted HIV". "Oh, okay then", and so she went ahead and did the blood test for me. She did it for me to spare me having to have it done by anybody else but she made it very plain that if I went into labour that I would have to deliver my -- her grandchild, my daughter, in isolation because the hospital were very concerned at the risk that I had contracted HIV through blood products when I was 16.
986	10	QUESTION: Then from that point in time when you had the neg ative HIV test through until you were -- until 2011, whic h we will come to, you weren't called in to be checke d for hepatitis C at any point, were you? ANSWER: No, not at all.
987	10	QUESTION: You weren't part of any look-back exercise? ANSWER: Not at all.
988	10	QUESTION: During that time you also carried triplets. ANSWER: I did.
989	10	QUESTION: Even then there was no testing for hepatitis C? ANSWER: There was no testing for hepatitis C. When I gav e birth to my triplets, I was tested for von Willebrand's disease and because von Willebrand 's disease is a disease that cycles the hospital that I was tested at said that at that point in time the y couldn't really find any evidence that I had von Willebrand's disease, so although they had some cryoprecipitate available should I go into labour, they weren't overly concerned.
990	10	QUESTION: You were working as a paramedic? ANSWER: I was.
991	10	QUESTION: Because of that work, you were vaccinated against hepatitis B and screened regularly? ANSWER: Yes.
992	10	QUESTION: You underwent a routine screening in June 2011? ANSWER: Yes.
993	10	QUESTION: And your understanding was that that was for hepa titis B? ANSWER: Absolutely. I didn't ask and I wasn't told but because we screened every three years I went for my routine occupational health screening and gave the normal blood test.
994	10	QUESTION: Then on 27 January 2012 you were telephoned by yo ur occupational health team. Can you tell us what happened. ANSWER: Yes. It's a vivid memory because I think it was the day that I became mentally unwell. I was answering an emergency call. I was driving an ambulance respons e car. I was driving rapidly with both visual and audible warnings on. I was responding to a road traffic collision and the internal phone in the response car went. It's not unusual; we have all sorts of hands-free devices in a rapid response car . I answered the phone and it was occupational health . That was unusual and they said that they had had a result from my blood test and they needed to info rm me that they believe that I was hepatitis C positiv e.
995	10	QUESTION: How did you feel at that moment? ANSWER: Shocked, very shocked. Scared for myself but als o scared for the fact that I was the nearest response vehicle to a road traffic collision that were expecting an eight minute ambulance paramedic response, that there could be people within that collision that were in need and I didn't know what to do. I didn't know whether to go or whether to pull over or whether to stop or whether I should or shouldn't render aid, and whether it was better to have a paramedic infected or possibly infected with hepatitis C or have no paramedic at all and I could n't decide.
996	10	QUESTION: Were you aware even that you had been tested for hepatitis C? ANSWER: No.
997	10	QUESTION: So this was the first you had heard about it? ANSWER: Yes.
998	10	QUESTION: After the occupational health team telephoned you , what happened next? ANSWER: I made the decision to pull over because it was u nsafe to continue, so I pulled over and spoke to them aga in and -- because I didn't realise I'd been tested so I was asking them how they knew I could possibly be hepatitis C positive. I hadn't at that point made the link between the Factor VIII at 16 and what was happening at that moment. I was just questioning t hem as to, you know, why they tested me and how they kn ew and why did they know, and they went through that I had been tested, that they are routinely now screening people that worked for the NHS and that's how they knew, and so I had had the test and that i t was positive. And then they said that you can't perform, from this moment onwards, exposure-prone procedures. So that was the loss of my job and my income at that point really. So I'm still sat in a response car, pulled at the side of the road. I radioed control and said I can't do these call. I don't feel well and they said, "Okay, stand down, we'll deploy another vehicle", which I presume they did and I drove the response car from there to my eldest daughter's hou se, parked it outside her house, which is really not allowed, didn't speak to anybody, just went into he r house and sat and told her and actually for a year it was only her and my husband that knew.
999	10	QUESTION: Once you had had that call from occupational heal th telling you, from that point on until rather later you were not able to be operational as a paramedic?0 ANSWER: No. You can't perform exposure-prone procedures.

900

9

QUESTION: I think you put together the fact you were treate d at Oxford, at this particular haemophilia centre by th e these particular consultants, that you were young - - ANSWER: Yes.

901

9

QUESTION: -- so the chances of you having been exposed to anything else were very small? ANSWER: Yes.

902

9

QUESTION: And that you received in this critical period in the early 1980s a very large amount of Factor IX concentrates? ANSWER: Yes.

903

9

QUESTION: And your belief that you've set out in your state ment is you might have been used as a guinea pig to test the effectiveness of the developing processes of he at treatment. ANSWER: Exactly that.

904

9

QUESTION: It's my understanding, Matt, that it's important to you to try and find out if that is the case or not. ANSWER: Yes, of course. I'd like the people or person, i f that is the case, to be held accountable for what they've put me and more importantly my family throu gh.

905

9

QUESTION: You have not pulled the punches in your statement , Matt. You have said you think your parents were li ed to. ANSWER: I can tell you now, hand on my heart, my parents would not have given me that medication if they knew the risks. They enquired about taking me to Wales to g et a different sort of treatment. Later on my Dad loo ked about paying for it himself personally, so there is no way my parents would have given me that medication if they knew the risks.

906

9

QUESTION: There came a point in time in which your parents were told that you had been infected with hepatitis C. ANSWER: Yes.

907

9

QUESTION: If we could have on screen, please, Paul, 1057005 . We can see this is a letter from the Oxford Haemophilia Centre dated 18 June 1990 to a haematol ogy consultant, a Dr Miller, in Milton Keynes and we'll see from the last sentence of that, if you could ju st highlight that, please, Paul, "we found him ...": "We found him hep c Ab positive from a sample taken last September." So we've got this letter June 1990, reference to a sample being taken in September 1989. Your statement says that it was in January 1992 that you r parents were first informed that you had hepatitis C. ANSWER: Correct.

908

9

QUESTION: Were you ever given or were they ever given any explanation as to why there was a significant delay between the testing and the knowledge that doctors had about your infection and your parents being told of your condition? ANSWER: No.

909

9

QUESTION: Do you know whether your parents were even asked to consent to you being tested for hepatitis C? ANSWER: I don't know. I don't believe so.

910

9

QUESTION: In the documents you've seen -- I know you have a sked Oxford Haemophilia Centre to give you what they have -- ANSWER: Yes.

911

9

QUESTION: -- and what we've got, which isn't very much, is all you've been given, as I understand it? ANSWER: Correct.

912

9

QUESTION: Is there anything in the material that you've bee n given which suggests that they were ever asked to g ive that consent? ANSWER: No. I would just like to add it took four reques ts to get this information and I only got that informatio n which is missing documents when Ben, my legal chap, intervened.

913

9

QUESTION: Between September '89 when it looks as though the sample was taken for testing and January 1992, 27 January 1992 is the date your statement gives wh en 0 your parents were finally told you had been infecte d with hepatitis C, would there have been a number of opportunities in that period when your parents were taking you to the haemophilia centre to see the doctors for check-ups and so on for them to have be en told of your diagnosis? ANSWER: Undoubtedly, I was there every other week with bl eeds, et cetera, or even not bleeds for check-ups, so I probably would imagine in that year-and-a-half, two-year period I went there probably 15 times minimum.

914

9

QUESTION: How does that delay in your parents being told ab out the infection make you feel? ANSWER: Angry, upset, more so for my parents. They have a massive sense of guilt on them.

915

9

QUESTION: You have said in your statement that that delay i n your parents being told causes you an enormous amou nt of anger and you've made two observations. One is potentially you weren't being treated properly for the hepatitis? ANSWER: Yeah.

916

9

QUESTION: But also there was a potential risk of others bei ng infected by you? ANSWER: Well, yeah. My Mum used to do my injections. Wh at would have happened if she would have pricked herse lf 1 at that young age. Obviously, it was quite fortuna te my Dad didn't do it because he probably would have pricked himself but, yes, that risk was always ther e and it was always I had the sense of shame and what if I was to infect my Mum or sisters or someone in the house.

917

9

QUESTION: Do you know whether your parents were given any a dvice or information in 1992 about the hepatitis C and it s seriousness and what should be done about it? ANSWER: No, they were told it was essentially just like t he flu, a bad cold, "but you'll get over it, nothing t o worry about", and that was it.

918

9

QUESTION: Your statement suggests that in January 1992 when your parents were finally told about the hepatitis C tha t there was some discussion about you moving on to a higher purity concentrates? ANSWER: Yes.

919

9

QUESTION: But you think that didn't happen until about 1994 ? ANSWER: Correct.

920

9

QUESTION: So again there was a delay in that change in the products? ANSWER: Correct.

921

9

QUESTION: You yourself from about early 1998, by which time you were a young adult, you asked about the possibility of being moved on to recombinant treatments you said i n 2 your statement. ANSWER: Yes.

922

9

QUESTION: You were told what? ANSWER: No. I was too old. I missed the age bracket by a couple of months. I think the reason that I wasn 't put on it was because I had the infection of hep c and there was no point putting me on that because the damage was done and, obviously, it's a cost implication involved, isn't it? I understand the treatment was slightly more expensive and, therefor e, it was no.

923

9

QUESTION: You were being treated still at Oxford? ANSWER: Yes.

924

9

QUESTION: In England? ANSWER: Correct.

925

9

QUESTION: You've made an observation in your statement abou t the different position for patients, as far as you were aware at the time, in Scotland and Wales. What was that difference? ANSWER: That the Welsh people would get it at any age, so my parents enquired about moving to Wales to get me th at better treatment but Oxford said, "If you do that, we'll stop it because that isn't the way it's done" .

926

9

QUESTION: Now, there came a point in time at which a letter was sent to you -- I'm going to ask for that to go up o n 3 screen. It's 1057006. It's a letter dated 20 September 2004 and it provided information about possible risks of vCJD. Do you recall receiving that letter? ANSWER: No, no, I don't. I'm blessed to have an amazing family and my parents hid that from me because they knew that with what I'd been through with haemophil ia and other infections they thought that might push m e over the edge, so I did not receive that. When I went to the Oxford Haemophilia Centre for my next check-up I was informed by a doctor that I had this, that -- I had been told that I am at risk and obviously it wasn't ideal.

927

9

QUESTION: If we just keep this letter up on screen but we g o to the second page, please, Paul, we'll see under what has happened there's a reference to product recalls after donors had been found to have vCJD and then i t says this: "We're writing to you to give you further information about these and about further batches t hat had been made using plasma from donors who later developed vCJD ..." Then over the page, please, "Who is affected?" Top of the next page, Paul, could you just highligh t that. 4 This identified the need for special public health precautions to be taken for many people who had received clotting factors. We can see that from th e bold print. Then if you could just go down the pag e please, Paul, to, "What special precautions should I take", the letter told you this: "You should not donate blood. You should not donate organs or tissues. You should tell whoever is treating you before you undergo medical, surgical o r dental treatment ... it would be best if you tell y our family about this ..." When you finally saw this letter what did you feel on receiving this information? ANSWER: I was really angry because it could have been prevented if I got given the factor earlier on. Th is was all completely preventable, obviously, because I've seen people in the past that have died of hepatitis C and died of HIV. I thought this would be the next wave coming through, people would then be wiped out from that, and it was just a massive, massive mental hit on me.

928

9

QUESTION: If we could just go to the next page, please, Pau l, if you could just highlight the section under "Can I f ind out if I've been treated with an implicated batch", second paragraph, Paul,"If you would like to find 5 out", just highlight that. So this letter said: "If you would like to find out whether you have received any of the implicated batches or you wish to discuss this further with us please indicate this o n the reply sheet." You decided you did want to find out -- ANSWER: Yes.

929

9

QUESTION: -- whether you were just generally at risk as som eone who had received clotting factors or whether there was a more specific and focused risk in your case? ANSWER: Yes. Against my parents' wishes, because obvious ly I had been through enough in their opinion, they sa id, "Look, don't worry yourself with it. What will be will be", but, yes, I chose to find out. In hindsight, probably the wrong thing to do.

930

9

QUESTION: If we look at, please, document 1057007, Paul. This was the request you sent. You wanted a risk assessment to ascertain what risk you were a t from CJD. You wanted to know how many batches you had had and whether or not the risk in increases due to the number of batches you had had. Then if we can go to the next document, please, that's the one, if we could just see the whole text of it. 6 So this is the response you received, Matt and it told you this in the first paragraph: "I know that you are already aware from discussions in the past that you have received batc hes of Factor IX concentrate including material donated from a donor who subsequently developed variant CJD ." Then if we look at the second paragraph you were told that you have been exposed to two batches of t he material. You'd received a total of 20,600 units o f one particular batch in the period February to April 1995 and 10,200 units in the period May 1997 to July 1997, and you were told that the general rule is that the risk of contracting any infection through blood products is related to the total amount of potentially contaminated product. ANSWER: Mmm.

931

9

QUESTION: What did you understand from the information you were receiving? ANSWER: I was extra lucky: I got two hits. So from that, obviously, it caused serious concern and alarm. I spoke to the Haemophilia Centre. They tried to s ay the risk was minimal but I'd heard that before with hep c. I'd heard that before with people with my illness, with HIV, and then I thought automatically I'm going to die. 7 When I was growing up I didn't ever have an issue with passing away from liver or liver illness but this came along and I'd seen people who literal ly lost all their functions. It was like catching Alzheimer's but dying in six months but I couldn't have that for me and I couldn't have that for my parents, but I was convinced in my mind, rightly or wrongly, this was going to kill me because I had se en people pass over from HIV, there was hep c, and now this one came along and I was like, "I'm going to die".

932

9

QUESTION: Have you ever received any more information than what we see set out in letter -- ANSWER: Nothing.

933

9

QUESTION: -- about the nature or extent of the risk you personally may be exposed to? ANSWER: Nothing. I had to chase it. The Haemophilia Soc iety posted on their website about two years ago there w as two cases of sporadic CJD in haemophiliacs, and tha t was posted about two years ago and that sent me ...

934

9

QUESTION: Take your time? ANSWER: That sent me over the edge because at that point I had a little boy who was my life and I didn't want him to see his Dad waste away, so it was quite tough.

935

9

QUESTION: Do you want some water, Matt? 8 ANSWER: Sorry.

936

9

QUESTION: Since 2004 when you received this information, you've lived with the fear and you continue to live with the fear that you may develop vCJD. ANSWER: Yes, every day you fall off balance or you forget something you think it's starting, you think it's starting and it's horrible. I am antidepressant dependent. I can't come off them. It's had a mass ive impact on my life but more so for my parents. It's not been easy.

937

9

QUESTION: You very powerfully said in your statement, Matt, that one of the things that makes you most angry and mos t upset is the impact on your wider family. You've g ot a sister? ANSWER: Two sisters.

938

9

QUESTION: Your parents, you've said for them there's a feel ing of guilt because they allowed you to have the concentrates, given the assurances that they had be en given? 9 ANSWER: Correct, correct. Like I said before, I have an amazing set of parents. I couldn't wish for better parents. I'm blessed. But what I've seen it do to them it makes me feel guilty because it's me that's causing it. Although its not my fault I still feel guilt. My parents have been beset by their only emotional problems, their own mental problems, and it's been -- as it's me affected I think it's been not as bad for me but as a parent now to two amazing bo ys I can't even imagine to begin what they must have g one through. For me, it's tough and if I die, I die bu t it's what happens if I die, the impact on them beca use of the guilt they have, because that could have bee n prevented. I could have been given the recombinant factor, which could have prevented all of that, but I wasn't because of cost. So it's quite tough. But, like I say, the CJD thing was very difficult for me and when the Haemophilia Society posted that on their website perhaps it wasn't the most thought out thing to do, I would imagine.

939

9

QUESTION: Just going back to the hepatitis C infection -- ANSWER: Yes.

940

9

QUESTION: -- I'm going to ask you in a moment about the treatment you had and the effect of that treatment?0 ANSWER: Yes.

941

9

QUESTION: -- but before you had treatment for the hepatitis C, how did the knowledge that you had hepatitis C affe ct the rest of your childhood and your young adulthood ? ANSWER: It's very hard because when I was young, it was - - I was told it's not a big deal, its non-A non-B. I ts just like a cold or a flu. You'll be fine. You'll get on with it but then when you start to go back a nd more and more people were dying from it, obviously, it started to set all of alarm bells and I thought why me? It's like why me and since then I've lost peop le that are close to our family who have been infected and I'm like, "Why is it me that's still alive?" I feel sometimes in my head, why is it -- why am I deserving to still be here when so many others ha ve gone before me and it's a horrible thought.

942

9

QUESTION: Did it affect your schooling? ANSWER: I was tired. My attention span is that of a gnat . I can't sit still. It's -- yeah, can't concentrate . It did affect it massively.

943

9

QUESTION: What about as a teenager and young adult, your behaviour, your emotions, how was that impacted. ANSWER: Yes, my emotions have been impacted massively by this but what caused the most damage was the treatment. I've always been a very affectionate caring person. 1 I had the treatment and that completely changed me. There was a spell for many years I'd go out, I'd ge t arrested. My Dad had to come to the hospital and I was handcuffed to the bed after fighting, getting myself into trouble, completely out of character. But the treatment, I can't describe it. It's awful. It really is horrific. It was for a year a nd it was the worst thing that I've ever been through and it's like I'm taking these tablets, giving myself these injections, why? I haven't done this to myse lf. I haven't caused this. I haven't caused this. Thi s could have been all prevented and the sense of ange r. It doesn't linger so much now because I'm constantly -- I'm always on tablets, so that puts a lid on my anger and emotion but if I don't take m y tablets for three or four days I'm horrific to be around. I'm awful. It's literally like I have got bipolar. I can be the most amazing person and I ca n be the most horrible person and that's not like me and I was never like that before.

944

9

QUESTION: That treatment, there's the treatment for hepatit is C that you began in autumn 2005. ANSWER: Correct.

945

9

QUESTION: What treatment were put on? ANSWER: Ribavirin interferon.2

946

9

QUESTION: In terms of the physical effect of it, how can yo u describe that? ANSWER: Dog-tired, angry, couldn't concentrate, can't sit still. It was just horrific. Constantly like your mind's in a cloud. You can't concentrate. You can 't think straight. You can't focus things probably. It wasn't the best. But, again, I'm lucky because I'v e cleared it. I'm lucky it's no longer here. I'm lu cky I have gone through that. There are many, many people that aren't as fortunate and those people who have lost loved ones , I can't imagine what they have been through.

947

9

QUESTION: But whilst you were having that treatment, you be came very depressed. Your temperament altered in the wa y you described. You decided there was no point bothering -- ANSWER: Correct.

948

9

QUESTION: -- with things because you thought you were going to die? ANSWER: Yes.

949

9

QUESTION: -- and you had suicidal thought thoughts? ANSWER: Big time, yeah, and I even have those thoughts to day. I just still have this immense feeling of guilt ove r me. I have this irrational anger that burns inside me and I don't -- I've driven to the train station on two 3 occasions to kill myself, in fact, because I just thought I can't carry on. But then I don't because I think about my parents and think about my son, an d now my two sons, and I can't do it but, yeah, it hasn't been easy.

950

9

QUESTION: So the hepatitis C virus was cleared by the treat ment? ANSWER: Yes.

951

9

QUESTION: So now the levels of hepatitis C are undetectable is the way in which you have put it in your statement? ANSWER: It's untraceable; so it's gone.

952

9

QUESTION: In terms of physical consequences for your liver, what's the position in relation to that? ANSWER: Got scarring and cirrhosis; so my liver's damaged because of it.

953

9

QUESTION: And you have tests routinely -- ANSWER: Correct, yes.

954

9

QUESTION: -- to keep that under review? ANSWER: Yes. So when I had it, recently one of my liver function tests went very high and obviously I get concerned thinking, "Oh, is this the start of liver cancer? Is this the start of the end for me?" and that's what you think about. If I go to the haemophilia centre -- now I've moved to the Royal Free in London, if I do go there and the blood tests are abnormal, I think I'm going to 4 die. I know it's irrational and I'm probably not a nd I can have a liver transplant, I can clear this, I can get over it but that's the irrational thought that' s there.

955

9

QUESTION: What's the impact of everything you've described, the infection with hepatitis C, the treatment, the effe ct the treatment had on you, and then this fear that overshadows everything in relation to the vCJD, wha t's the impact of that been on your ability to work and maintain your career and to look after your family? ANSWER: So I'm -- again, my Dad has installed a work ethi c in me. He's always worked and I've always tried to wo rk. But I've found a job where I can work from home so I can have a nap in the day. I sleep loads. I'm i n bed every day by half seven -- every day. If I cou ld, I'd be in bed the whole day but unfortunately I hav e to work, I have to provide for my boys and for my partner. So it hasn't been easy. It has been really, really hard and I would be so much better off if I hadn't been through what I've been through. I wouldn't be -- obviously I wouldn't be sat here, but I would be so much better off mentally, emotionally , physically. But it is what it is, isn't it?

956

9

QUESTION: You have had to -- in terms of work opportunities , 5 you've had to, for the reasons you've given, turned down promotions, turned down opportunities to trave l? ANSWER: Yes. I get very, very tired. If I -- because my ankles have been fused and they're arthritic and I got -- I can't lift my elbow because that's gone as well. But, yeah, in terms of going out to meet clients, I'll have a one-hour meeting then I fall asleep on the train coming back, not something you do with someone who's 38. It is hard. You are dog-tr ied all the time.

957

9

QUESTION: One of the things you say in your statement is on e of your many fears is, if something happens to you, is that you are not in a position to leave your partne r and your children financially well cared for? ANSWER: I won't be working by the time I'm 40 I don't fee l. The tiredness, the fatigue, the depression is getti ng worse, so my concern is what happens when that happens. I don't want Naomi to provide for me. I' m the man. That's what a man should do. My Dad has instilled that. He has always gone out and worked. I should provide for the people I love and those peop le that I have made, my two sons.

958

9

QUESTION: What have the effects been in terms of when you a re trying to access other treatment, for example, dent al treatment what's happened then? 6 ANSWER: Yeah, so I went to my dentist some time ago and h e wouldn't treat me because I was exposed to new vari ant CJD. The instruments were too expensive so he said he couldn't treat me. I then probably spent the best part of two or three years to find a dentist who wo uld find me and they wouldn't, so I went to another dentist and I didn't tell him because I had an absc ess in my mouth and it was really, really sore, I mean painfully sore so I didn't tell him. Probably not the best thing, but I had to get the abscess sorted.

959

9

QUESTION: What about when you just go for some of the routi ne treatment that as a life-long haemophiliac you will inevitably have to go to, what happens in terms of the way in which you are treated? ANSWER: So obviously I'm blessed to have cleared the viru s and I cleared that at a young age, but there's massive stickers, danger of infection, risk of infection, I presume about the CJD and it's not good to see wh en people ask what's this about. It's almost like I feel like sometimes that I have been a drug user and that's the perception o f me because I've got this. Obviously when going bac k to the early '80s it was much worse with what was perceived the gay plague but it's still bad for me now. Like I've got amazing family, I've got amazin g 7 friends and I'm very, very lucky but obviously back 20/30 years ago people weren't so forgiving.

960

9

QUESTION: Whenever you do have any kind of procedure you ar e at the end of the list. ANSWER: Oh yeah, yes.

961

9

QUESTION: You are made to feel very aware that you are at t he end of the list? ANSWER: Yes.

962

9

QUESTION: Have you ever been offered any form of counsellin g to deal with the issues that you have identified in te rms of the exposure to infection and risk of vCJD? ANSWER: No, no, none, absolutely none. I've had to -- my Dad when I was younger was desperate to put me on it because I was slowly killing myself so he would pay for it for me but I didn't like it, I didn't like talking about it, I didn't like bringing it up. The reason I'm here today is I want to talk for those people that can't be here. There is someone close to the family who has passed away through an illness and he can't be here so I'm talking partly on his behalf, but partly because this all could have been prevented. My life has been completely dismantled, completely taken apart for something th at could have been stopped and it's just -- yeah.

963

9

QUESTION: You get an amount of regular payment from you, go t 8 some monies originally from the Caxton Foundation a nd now form the EIBSS? ANSWER: Yes.

964

9

QUESTION: What has been your experience of making applicati ons for financial assistance? ANSWER: Caxton Foundation, I can't -- I don't even rememb er applying for it. That money went in a matter of months. I thought I was going to die, so I just spanked it. I was 20. I thought, do you know what , I'm not going to be here, so let's have fun. So that's what I did. Then the other ones, the regular payments, it's you have to go through so many forms. Even though everything is on my records, I am fatigued, I am tired, I can't walk, I do get out of breath, you st ill have to apply. They have my notes and you apply , s end off the forms, you get more information back, it go es on and on and on, and also as well it's just hard applying. I don't feel like I should apply to the Government who, in my opinion, the NHS are the ones that gave me this and I'm asking them to help me fo r what they've given me. It doesn't make sense.

965

9

QUESTION: Matt, those are the questions I had for you. I a m going to ask Mr Stein in a moment if there is any other matter he would like me to raise but is there 9 anything else you'd like to say about your evidence ? ANSWER: The evidence is true. It's all been really, real ly painful. I love my family so much and thank you fo r everything that they've done for me. I know it has n't been easy for you two, and I just hope that some go od can come of this. I hope that justice can be done. I hope the people who are accountable, because in m y opinion there is, are held to account and this is never repeated. This is never repeated. I don't want the people in this room, their families to go through what I've been through. I don't want any other haemophiliac to have to die or to go through the pain I have been through, or anyo ne else for that matter. We are a very, very rich nation. People should not be put behind profit from pharmaceutical companies. It should be about preserving people an d life and I just feel that the people, the poor peop le that I was speaking to last night at the hotel and the poor people in this room that have lost loved ones, it breaks my heart. I'm lucky I'm here, I've cleared hep c, I'm okay. Obviously, I'm damaged. I'm irreparably damaged but there are people that have lost people that they love and as a parent now I can only feel 0 nothing but pain and sorrow for them, but yeah.

966

10

QUESTION: Fiona, you were diagnosed with von Willebrand's disease at the age of 4. ANSWER: Yes, I was.

967

10

QUESTION: And your mother had been told what you could and couldn't do? ANSWER: Yes.

968

10

QUESTION: So lots of your childhood activities were restric ted? ANSWER: They were, yes.

969

10

QUESTION: As an older child, a young teenager, you had some issues with your teeth. Can you tell us what was wrong. ANSWER: Yes, I can. I wasn't -- I had an overcrowded mou th and so I had lots of teeth. Some of the front teet h were pointing out forwards and they had been for li ke most of my young life, unfortunately because of the von Willebrand's disease no dentist was willing to remove any of them for fear of haemorrhage.

970

10

QUESTION: What impact did that have on you as a young perso n? ANSWER: It was horrible and I used to have the mickey tak en out of me at school constantly. It bothered me far more than von Willebrand's disease as a young perso n because it's so important to try to fit in and feel like everybody else and I looked quite different to everybody else. I also couldn't have my tonsils ou t and that meant that I was regularly off school for weeks at a time. I used to pretend my tonsils were worse than they were for longer than they were because I did n ot want to go to school because my teeth poked out forwards. You actually could see that the bottom o f the tooth instead of the front of the tooth.

971

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QUESTION: But when you were about 16 in October 1981 you ma naged to persuade a dentist to refer you for treatment. ANSWER: I did, yes. I'd already removed the front ones myself. I remove them one night with a tin of talc um powder and my father's pliers. I was distraught by the look of them and had been for years and I -- my mother still wouldn't ag ree to helping me to have them removed. My mother was wonderful, is a wonderful, wonderful lady but she w as so worried about anything happening to me or my sister, because my sister was also diagnosed with von Willebrand's disease, that she wouldn't agree t o me having anything done about them so I did it myse lf one night. I arrived in her bedroom with blood running down my face and the talcum powder in one h and and the teeth in the other, very proud of myself, y es.

972

10

QUESTION: By 16, October '81, you had managed to persuade t he dentist to refer you -- ANSWER: I did.

973

10

QUESTION: -- for full treatment? ANSWER: Yes.

974

10

QUESTION: What were you told was required? ANSWER: That they were going take some teeth out from rou nd the back then I could go forward and have braces fitted, et cetera, to have the teeth straightened a nd moved around.

975

10

QUESTION: And to have that procedure, you were told you wou ld need Factor VIII? ANSWER: Yes.

976

10

QUESTION: When there was the discussion about having the Factor VIII for the dental procedure, we re you warned of any risks in receiving it? ANSWER: No, no risks.

977

10

QUESTION: You received the Factor VIII both before and afte r the surgery? ANSWER: I did.

978

10

QUESTION: And then you didn't receive any blood products fr om that point in time until you were diagnosed with hepatitis C, did you? ANSWER: No, I didn't.

979

10

QUESTION: As an adult, you were diagnosed with thyrotoxicos is, excess thyroid hormone. ANSWER: No, I've got an under-active thyroid.

980

10

QUESTION: Sorry, under-active thyroid? ANSWER: Yes.

981

10

QUESTION: You had some problems with your knees? ANSWER: Terrible swelling of the knees which regularly required a fluid to be removed and cortisone injections to be inserted into the knees. It went on for years and still to this day sometimes I do have treatment on my knees.

982

10

QUESTION: But apart from that you were generally well in yo ur early adulthood? ANSWER: Yes, generally well.

983

10

QUESTION: In 1985 when you were pregnant with your eldest daughter you were tested for HIV. ANSWER: I was.

984

10

QUESTION: And it was negative. ANSWER: It was.

985

10

QUESTION: Why were you tested at that point? ANSWER: I had had a fairly normal pregnancy and I had got to 38 weeks pregnant when my mother, who was at the ti me a senior midwife and ran the antenatal clinic at ou r local hospital, contacted me to say, "I needed to s ee you". I was, "Oh okay, Mum, any time", and she sai d, "No, it's quite official but I'll come to you". Sh e came to our house and she said, "I need to do a blo od test", and I said, "Oh, okay then", and she said, "Darling, you need to understand that your consulta nt has picked up that in your notes you had been given a product that could mean that you had contracted HIV". "Oh, okay then", and so she went ahead and did the blood test for me. She did it for me to spare me having to have it done by anybody else but she made it very plain that if I went into labour that I would have to deliver my -- her grandchild, my daughter, in isolation because the hospital were very concerned at the risk that I had contracted HIV through blood products when I was 16.

986

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QUESTION: Then from that point in time when you had the neg ative HIV test through until you were -- until 2011, whic h we will come to, you weren't called in to be checke d for hepatitis C at any point, were you? ANSWER: No, not at all.

987

10

QUESTION: You weren't part of any look-back exercise? ANSWER: Not at all.

988

10

QUESTION: During that time you also carried triplets. ANSWER: I did.

989

10

QUESTION: Even then there was no testing for hepatitis C? ANSWER: There was no testing for hepatitis C. When I gav e birth to my triplets, I was tested for von Willebrand's disease and because von Willebrand 's disease is a disease that cycles the hospital that I was tested at said that at that point in time the y couldn't really find any evidence that I had von Willebrand's disease, so although they had some cryoprecipitate available should I go into labour, they weren't overly concerned.

990

10

QUESTION: You were working as a paramedic? ANSWER: I was.

991

10

QUESTION: Because of that work, you were vaccinated against hepatitis B and screened regularly? ANSWER: Yes.

992

10

QUESTION: You underwent a routine screening in June 2011? ANSWER: Yes.

993

10

QUESTION: And your understanding was that that was for hepa titis B? ANSWER: Absolutely. I didn't ask and I wasn't told but because we screened every three years I went for my routine occupational health screening and gave the normal blood test.

994

10

QUESTION: Then on 27 January 2012 you were telephoned by yo ur occupational health team. Can you tell us what happened. ANSWER: Yes. It's a vivid memory because I think it was the day that I became mentally unwell. I was answering an emergency call. I was driving an ambulance respons e car. I was driving rapidly with both visual and audible warnings on. I was responding to a road traffic collision and the internal phone in the response car went. It's not unusual; we have all sorts of hands-free devices in a rapid response car . I answered the phone and it was occupational health . That was unusual and they said that they had had a result from my blood test and they needed to info rm me that they believe that I was hepatitis C positiv e.

995

10

QUESTION: How did you feel at that moment? ANSWER: Shocked, very shocked. Scared for myself but als o scared for the fact that I was the nearest response vehicle to a road traffic collision that were expecting an eight minute ambulance paramedic response, that there could be people within that collision that were in need and I didn't know what to do. I didn't know whether to go or whether to pull over or whether to stop or whether I should or shouldn't render aid, and whether it was better to have a paramedic infected or possibly infected with hepatitis C or have no paramedic at all and I could n't decide.

996

10

QUESTION: Were you aware even that you had been tested for hepatitis C? ANSWER: No.

997

10

QUESTION: So this was the first you had heard about it? ANSWER: Yes.

998

10

QUESTION: After the occupational health team telephoned you , what happened next? ANSWER: I made the decision to pull over because it was u nsafe to continue, so I pulled over and spoke to them aga in and -- because I didn't realise I'd been tested so I was asking them how they knew I could possibly be hepatitis C positive. I hadn't at that point made the link between the Factor VIII at 16 and what was happening at that moment. I was just questioning t hem as to, you know, why they tested me and how they kn ew and why did they know, and they went through that I had been tested, that they are routinely now screening people that worked for the NHS and that's how they knew, and so I had had the test and that i t was positive. And then they said that you can't perform, from this moment onwards, exposure-prone procedures. So that was the loss of my job and my income at that point really. So I'm still sat in a response car, pulled at the side of the road. I radioed control and said I can't do these call. I don't feel well and they said, "Okay, stand down, we'll deploy another vehicle", which I presume they did and I drove the response car from there to my eldest daughter's hou se, parked it outside her house, which is really not allowed, didn't speak to anybody, just went into he r house and sat and told her and actually for a year it was only her and my husband that knew.

999

10

QUESTION: Once you had had that call from occupational heal th telling you, from that point on until rather later you were not able to be operational as a paramedic?0 ANSWER: No. You can't perform exposure-prone procedures.