pnadel/npi_all_transcripts · Datasets at Hugging Face

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1,900	19	QUESTION: After you got the letter, what did you do? ANSWER: I went to see the doctor. The doctor, a local GP , he didn't know a lot about it at the time but he did f ind out, took the blood tests, which came back positive .
1,901	19	QUESTION: So you'd gone to your GP in about August 1995, yo u got the results in September 1995. Exactly what did th e GP tell you when he told you you had hepatitis C? ANSWER: That I had -- obviously I had -- I had been given infected blood. This wasn't confirmed until some t ime later when I went into hospital and had another op. I had a -- when they removed -- whatever it's called.
1,902	19	QUESTION: A liver biopsy? ANSWER: They gave me a liver biopsy, yes.
1,903	19	QUESTION: So your GP referred you to your local district hospital. ANSWER: Yes.
1,904	19	QUESTION: You had the liver biopsy. ANSWER: Yes.
1,905	19	QUESTION: Do you remember what that showed? ANSWER: It was significant scarring.
1,906	19	QUESTION: Did either the GP or the local district hospital tell you very much about what hepatitis C was? ANSWER: Not really, not much, no. Most of it came from m y elder daughter.
1,907	19	QUESTION: Before we get to what your elder daughter could t ell you, I just want to ask you a little bit more about what you were told. Were you told anything about the treatments that might be available to you? By the GP -- ANSWER: I can't recollect that I was, no.
1,908	19	QUESTION: Were you told anything of the risks of transmissi on? ANSWER: A little bit but not that I made anything much of it, no, not a lot.
1,909	19	QUESTION: So what did you understand the situation to be be fore you started -- ANSWER: That I had been given this. But as it never affe cted me in any way, I'm afraid I didn't fuss too much ab out it. Life goes on.
1,910	19	QUESTION: Now, as it happened, at that time your daughter w orked for a pharmaceutical company that produced interfer on. ANSWER: Correct.
1,911	19	QUESTION: What did she tell you to do? ANSWER: She advised me to go to -- down to Exeter, the Ro yal Devon & Exeter Hospital. She said they had the bes t hepatologists down there and I asked to be treated there. I saw the doctor down there and, as I have said in my statement, eventually treatment started.
1,912	19	QUESTION: It was your daughter, wasn't it, that explained t o you a little bit more about what hepatitis C actually w as? ANSWER: Well, she did. She did then say how infectious i t was and how careful I should be but, I mean, I'm sorry but I did not, as it really didn't affect me that much, I was not aware of the dangers of -- too much of passing it on. I mean, Fiona did stress this.
1,913	19	QUESTION: But you hadn't been told that by your GP or the district hospital? ANSWER: It hadn't been stressed to me at all.
1,914	19	QUESTION: That very much came from your daughter? ANSWER: That very much came from my elder daughter, yes.
1,915	19	QUESTION: And then subsequently from the Royal Devon & Exet er? ANSWER: Definitely from Royal Devon & Exeter, yes.
1,916	19	QUESTION: You were then looked after by the Royal Devon and Exeter throughout your treatment until 2017 when yo u were discharged from their care? ANSWER: Yes.
1,917	19	QUESTION: Through that time with the Exeter Hospital, they also then explained to you exactly what hepatitis C was and the risks in relation to transmission. ANSWER: Yes. The hepatology nurse down there who in fact treated me and I think after all these years she's still, the same nurse is still there in charge of i t, and she did explain that she was going into prisons and various different things and how dangerous it w as and how careful I should be.
1,918	19	QUESTION: When you went to the Exeter Hospital there's just one point that I think is helpful for us to hear. You went in for your appointments, didn't you, and on t he same day you had your blood tests or fibroscan or whatever you were going in for and then saw the consultant on the same day? ANSWER: That's right. I did. I mean, luckily the train is -- Tobecombe station is just down the road from me and I can get on the train, go straight to Exeter and g et a bus up to the hospital. This was particularly important as when I was on the treatment I was warn ed that I could get all sorts of reactions.
1,919	19	QUESTION: But even before you were on the treatment, if you had to go for any tests or scans, they were done on the same day as -- ANSWER: Yes.
1,920	19	QUESTION: -- when you saw the consultant got the results? ANSWER: Well, as I had some distance to travel I rather insisted on that and I said, "For goodness sake, yo u know, I really don't want to be going up and down a ll the time. I want it all done on the same day", whi ch they complied with.
1,921	19	QUESTION: In 2005 you started treatment to clear the virus. ANSWER: Yes.
1,922	19	QUESTION: You had interferon and ribavirin for about six mo nths? ANSWER: Exactly, yes.
1,923	19	QUESTION: You were warned that there would be very bad side effects. ANSWER: I was warned that I could have very bad, which is why I should not drive, I should go on the train which was quite simple for me.
1,924	19	QUESTION: How did you feel while you were on the treatment? ANSWER: It didn't affect me at all. I was one of the luc ky ones.
1,925	19	QUESTION: You were able to carry on working? ANSWER: Yes.
1,926	19	QUESTION: You had no real physical symptoms at all? ANSWER: No, none whatsoever.
1,927	19	QUESTION: And you successfully cleared the virus first time ? ANSWER: Yes.
1,928	19	QUESTION: So you were discharged from the Royal Exeter in August 2017? ANSWER: I was going every year, annually, for blood tests and fibroscans and all of the newer ways of scanning. Yes, every year. Fortunately, you know, there was not many changes.
1,929	19	QUESTION: You feel you received really excellent care from the Royal Exeter? ANSWER: I did receive excellent care from Exeter, yes.
1,930	19	QUESTION: From the date you were told you had hepatitis C u ntil you were told you'd cleared the virus you obviously said that you had very few physical effects but how did you feel mentally? ANSWER: Once I knew what had happened, I felt it was rath er like a time bomb that could go off at any time. Yo u know, it had been actually drummed into my head wha t I had got and how lucky I was and then I thought, well, for goodness sake this can ... I realised the n the situation I was in and not a nice place to be.
1,931	19	QUESTION: Can you tell us any more about how you were feeli ng during that time? ANSWER: Well, not really it was just I never new quite wh at 0 was going to happen or what could happen. I had be en told by the hepatology nurse in Exeter, you know, v ery graphically, I had seen others in clinics down ther e and, you know, what could happen to me and fortunat ely it never did.
1,932	19	QUESTION: You have described it in your statement as in the years before you cleared hepatitis C it was like living with a time bomb and constantly waiting for it to go off. ANSWER: Exactly.
1,933	19	QUESTION: Your daughters have said that you're one of those people who just gets on with things. Was that your approach to it? ANSWER: Yes. Well, I just feel, you know, I mean, we're all here, we've got to make the best of it.
1,934	19	QUESTION: In all of that time did you face any stigma from your infection? ANSWER: Not really, no. Definitely not. I didn't hide i t but I didn't tell everybody.
1,935	19	QUESTION: There was one -- ANSWER: I told more people about the fact I was coming up here, actually.
1,936	19	QUESTION: There was one occasion, though, wasn't there, whe re you were asked initially to be on television? ANSWER: This was early on with the Liver Trust and they 1 interviewed me on the farm and I wasn't considered angry enough to be used, put it that way.
1,937	19	QUESTION: You were interviewed for the television to explai n what you'd gone through with the whole blood scanda l and they interviewed you so you could make a case. ANSWER: That's right. Well, I don't think they wanted -- I wasn't newsworthy, put it that way, or I didn't p ut it over as strongly enough for them.
1,938	19	QUESTION: You weren't angry enough -- ANSWER: I wasn't angry enough --
1,939	19	QUESTION: -- so it wouldn't have the impact. ANSWER: No.
1,940	19	QUESTION: You have received some payments from The Skipton Fund. ANSWER: Yes.
1,941	19	QUESTION: Do you have any observations you want to make abo ut the funds? ANSWER: The only observation -- I mean, I have received i t and obviously still am but I do object strongly to the fact that we were given through no fault of our own infected blood, and why should anybody have to go w ith means testing or anything else for something which was not their fault? I mean, I think it is -- you know, it's quite wrong. We never should have been in this situation and why should anybody be means tested? 2
1,942	19	QUESTION: Those are the questions I have for you. Is there anything else you would like to say? ANSWER: I think the donations part of it, blood donations part, is important. I can't give any exact dates but -- I want to stress really that this whole situation should never have happened and why has it taken so long?
1,943	19	QUESTION: Just on the blood donations, we picked up on that earlier but just to clarify you are confident you d id give blood prior to the look-back? ANSWER: Yes.
1,944	19	QUESTION: But you're worried about whether you also gave bl ood after the look-back? ANSWER: I could have but I mean, as I said, it's quite a long time ago. I don't keep records of this. My local GP surgery have been very good at finding letters whic h I've submitted to you, you know, over the operation s and things like that but somebody's probably got a record somewhere.
1,945	20	QUESTION: Steven, you were diagnosed with severe haemophili a A when you were about 15 months old. ANSWER: That's correct.
1,946	20	QUESTION: Initially you were treated with cryoprecipitate. ANSWER: Yes.
1,947	20	QUESTION: Then in the late 1970s/early 1980s when you were about two or three you were given Factor VIII. ANSWER: That's correct.
1,948	20	QUESTION: Are you aware of your mother being told anything of the risks involved in the change to your treatment? ANSWER: Not that I'm aware of, no, unfortunately, and my mother's no longer alive for me to obtain that information since the Inquiry started, so ...
1,949	20	QUESTION: At first you received your Factor VIII in hospita l? ANSWER: That's correct.
1,950	20	QUESTION: Then when you were about seven or eight your Mum was taught to administer it at home. ANSWER: I believe so, yes. It was around that time. It' s a little bit vague, foggy but, yes, it's around tha t time.
1,951	20	QUESTION: Paul, could we have document 1139002, please. If you look in front of you, the document is on the screen so you can see exactly what we are all seeing. On 18 June 1984, a blood sample was taken from you and you tested positive for HIV; is that right? ANSWER: Yes, that would appear right, yes.
1,952	20	QUESTION: But your recollection and your understanding from your mother was that she wasn't told that you'd tested positive for HIV until about 1985 or 1986? ANSWER: Yes, that's what I understand. Yes, that's what she told me when we discussed it.
1,953	20	QUESTION: As you said, sadly, your mother has now passed aw ay. ANSWER: Yes.
1,954	20	QUESTION: So you are not very sure what she was told but yo u think she was told, either then or subsequently by a social worker, that your life expectancy would be shortened and you were more at risk of infection an d illness? ANSWER: That's correct, yes. That was what my Mum had re lated to me once she had told me that I'd been infected, yes.
1,955	20	QUESTION: That was really the limit of what she was told at that point? ANSWER: Yes. My Dad has a slightly different recollectio n of it. His was that -- my Dad came out of that room a nd he said [redacted] after he came out the room with the social worker at that time because in some way he blamed himself. I'm not quite sure why that was bu t, yes, he felt that the information they received was particularly unhelpful and didn't really offer them the support that they probably needed actually.
1,956	20	QUESTION: How did you find out that you were HIV positive? ANSWER: So I found out when I was 13. My Mum had taken m e to a medical for -- a Department of Work and Pensions medical. I believe it was for an application for Disability Living Allowance and my Mum and the doct or were talking and I recalled my Mum saying HIV and that's how I kind of remember hearing it for the fi rst time. I don't recall hearing it before then, although, that being said, there was stuff in my family that had changed prior to that, the way that my parents had treated me and stuff like that. That became apparent earlier now looking back. But, yes, that's how I initially heard and then a few weeks later I was reading an article in the newspaper and there was a TV personality's son had died from AIDS and I said to my Mum, "That's what I 've got, isn't it", and she went, "Yeah, yeah".
1,957	20	QUESTION: At about the same time you were going through pub erty, noticing girls. ANSWER: Yes.
1,958	20	QUESTION: So your Mum booked an appointment for you to talk to a doctor about your diagnosis? ANSWER: Yes.
1,959	20	QUESTION: Can you tell us about that? ANSWER: I remember going to -- my care was under the Hammersmith at the time and I remember seeing a doc tor that I'd never seen before and I don't recall ever seeing again actually, and we sat down and we start ed to have a conversation but, obviously, sexual transmission and that kind of stuff and, yeah, and the way it was conveyed was -- well, the way I left the meeting was I felt that I was a danger to people an d that, you know, it was probably a better idea for m e to just avoid that whole scenario of getting involv ed with girls and stuff like that. It just -- my wors t nightmare would have been to infect someone else.
1,960	20	QUESTION: You were 13. ANSWER: Yes.
1,961	20	QUESTION: You were at that meeting on your own? ANSWER: That's correct, yes.
1,962	20	QUESTION: Without your parents? ANSWER: I don't recall my Mum being there actually, no.
1,963	20	QUESTION: With a doctor who you'd never seen before and, as far as you are aware, you weren't treated by again? ANSWER: No, I don't think so.
1,964	20	QUESTION: What did that doctor tell you about your life expectancy as well? ANSWER: He implied that my life expectancy would be short er and that I'd probably had four or five years to liv e and that, basically, if I had anything that I wante d to do I should go and do it because my time was goi ng to be limited. That was particularly difficult for -- you know, I don't know any 13-year old that would have had th e emotional intelligence to be able to comprehend wha t that meant, you know, and it influenced every major decision I made in my life thereafter, you know, an d I made some bad choices along the way. But, you kn ow, it certainly had a massive impact on me. You know, I would fail to articulate actually the impact it h ad on me.
1,965	20	QUESTION: Your mother was also told at some point that you had hepatitis C. ANSWER: That's correct.
1,966	20	QUESTION: But you're not entirely sure when that was. ANSWER: I don't recall when that was, but I was actually told that in a very off-the-cuff kind of way.
1,967	20	QUESTION: Can you tell us how you were told? ANSWER: I was in a routine appointment with a haematologi st and he looked through my records and he said, "Oh, you've got hepatitis C as well", and for some reaso n I'd already known that. I'm not sure how I really knew that but I went, "Yeah, it's okay, I already k now that", and that was the end of the conversation. N ot really understanding the magnitude of it really.
1,968	20	QUESTION: As far as you're aware, were you given any inform ation about hepatitis C, how to manage it and the risks involved? ANSWER: No, none at all.
1,969	20	QUESTION: You said that you reacted very badly to the news at 13 -- ANSWER: Yes.
1,970	20	QUESTION: -- that you had four to five years to live. ANSWER: Yes.
1,971	20	QUESTION: You in fact left school at that point. ANSWER: Yes, I kind of made a conscious decision that I w asn't going to be alive long enough to use an education, so what was the point of having one? You know, and it 's probably one of the regrets that I have today, actually, that I threw away the opportunity for a really good education, actually, because I'd work ed really hard to get into quite a prestigious seconda ry school, my teachers had quite high hopes for me, yo u know, they spoke about Oxford and Cambridge and I would have been the first member of my family to go to university had that transpired. Yeah, it's one of my regrets actually but, you know, given the information that I was given at the time there was a lot I wanted to do and I was a rea lly angry young man at 13, actually, because of it.
1,972	20	QUESTION: How did that anger express itself? ANSWER: Firstly, I took to my bed for a year and played t he Megadrive for an obscene amount of hours and then I was quite, you know, I was quite a smart kid and where I grew up from I grew up on a council estate, you know, and I grew up quite poor. So our financi al situation was not great, so where I come from, if y ou want money, you have to go and do certain things to earn that money and in my world money creates choic es and then I could do what I wanted to do; so that wa s kind of what I chose to do.
1,973	20	QUESTION: You went off the rails for about five or seven ye ars. ANSWER: Yes, maybe a bit longer than that but certainly I started doing things at about 14 or 15 that a 14 or 15-year old shouldn't have been doing. I engaged i n some criminal activity. Yeah, and you know it afforded me the choices to do what I wanted to do w ith my life, and what it done, it gave me the opportuni ty to regain some power, actually, because I'd felt th at all my power and all my choices had been taken away from me, and what it did do is it gave me the opportunity to exert some power and some control an d actually to be angry towards society because I felt that I carried huge amounts of societal shame for many, many years. Yeah, and I turned all the anger inwards actually. I actually despised who I was.
1,974	20	QUESTION: You have said that in engaging in that criminal activity you wanted to have killed yourself before the infections killed you? ANSWER: Yes. So I got to a certain point where I couldn' t cope with the internal conflict that was going on inside me and I wanted to -- I wanted to die on my own terms and I turned to drugs and alcohol and they provided me with a certain amount of ease and comfo rt for a little while. But I always had it in the bac k of my mind that they would, should I need them to, they would do the job for me. I wanted to die befo re I became symptomatic actually, because that would h ave been, where I grew up and where I come from, that would have been extremely difficult. My HIV status was the family secret and it would have been very difficult where we grew up for that to have become public knowledge, yeah.
1,975	20	QUESTION: At the age of 15 you decided you would never have children? ANSWER: That's correct, yes.
1,976	20	QUESTION: What was going through your mind? ANSWER: I'd started to have relationships with girls by t hen and, you know, the sheer terror of not being able t o share that information with them, you know, filled me 0 full of ... do you know what, I can't even articula te how it made me feel.
1,977	20	QUESTION: You have said in your statement: "I felt I had no choice in the decision I made because I was worried and scared that I'd put the children at risk. I also believed I wouldn't live long enough to raise them." ANSWER: And that was my belief at that time, yeah. That was my belief at that time and it's one, in all the wor k I've done on myself over the years, it's the one th ing that I've never been able to change, unfortunately. Even today my last relationship ended because I was not prepared to have children, yeah.
1,978	20	QUESTION: That spiral of criminal activity and mental healt h difficulties continued for a number of years? ANSWER: They did, yes, correct.
1,979	20	QUESTION: When you were about 21, you made an attempt on yo ur life? ANSWER: I did, yeah.
1,980	20	QUESTION: You also at about 21 had a cardiac event at your parents' house? ANSWER: That's correct.
1,981	20	QUESTION: At that point, you realised that perhaps the HIV wasn't going to kill you? ANSWER: Yes, I -- you know, given what the doctors had to ld me 1 and how old I was I kind of figured out it probably wasn't going to kill me, yeah, and I kind of made t he decision to, kind of, change my life slightly then. I didn't change it completely, I'd be perfectly hon est about that, but I stopped doing a lot of what I was doing and tried to integrate back into society to s ome degree and, you know, I had reasonable -- you know, I met a girl, we moved in together, you know, stuff , that kind of fluffy stuff that happens, yeah.
1,982	20	QUESTION: That was the beginning for you, wasn't it, of a gradual, a very long and very gradual process of, as you say, reintegrating and coming to terms a little bit with what did had happened. ANSWER: Yes, I had a -- yeah. I mean, coinciding with th at my Mum had been diagnosed with cancer many times throughout my adolescence and she got sick again in my early 20s and my Mum had been, through all of my medical stuff, had been kind of my one rock and as she got sicker and sicker and sicker I couldn't cope wi th the way that I felt and I went back to some of the substances that I had used previously, hoping they' d do for me what they'd done for me before, which was make my reality more bearable, and they didn't, and when my Mum died I was left in a worse position tha n I had ever been, and the time-line on my suicide 2 attempt was then, yeah, and ... yeah, my loving girlfriend at the time took me to the local mental hospital because I was clearly a little bit crazy, you know, and they took me in there and pumped me full of really nice drugs that make you feel nothing, and i t was there that I kind of decided, "You know what, I can't do this anymore. I'm going to destroy myself", yeah, and I made a decision that I wanted to change my life from then on and that's what I've tr ied to do since then.
1,983	20	QUESTION: Can you tell us about the physical effects of the HIV on you. ANSWER: So I would have all the recognised side effects f or someone who's had HIV as long as I have. I have chronic insomnia; I have chronic fatigue; I have generalised anxiety disorder, you know, the list is extensive. They are the three ones that cause me t he most difficulties today. Social interaction is particularly difficult for me. You know, this is a very big arena for me to b e around but, yeah, some of them cause me -- they com e in waves, you know. Some days are better than othe rs.
1,984	20	QUESTION: Alongside that the hepatitis C has caused chronic fatigue? ANSWER: Yeah. 3
1,985	20	QUESTION: You have had a variety of treatments over the yea rs. If we start off with the HIV -- ANSWER: Yes.
1,986	20	QUESTION: What can you tell us about the side effects of yo ur treatment with AZT that you had in your late teens. You had it in combination with some other medicatio n. ANSWER: Yeah, I think my first combination was -- I want to say it was eight or twelve pills a day and I ... it completely just, it wiped me out is the best way I can describe it. You know, I found it difficult to kee p food down. I found it difficult to keep water down at some times. I broke out in something called a nevirapine rash, and that is probably the most difficult side effect that I had experienced in my early combinations because it made me look like crocodile man. All my skin was very flaky and, you know, people would move away from me on public transport and if that didn't, you know, it just impounded and made worse the societal shame that I' d carried for all those years because, you know, ther e was actually people physically manifesting that to me that, as it goes, you know what, you need to stay a way from this guy.
1,987	20	QUESTION: After a couple of years on that combination you changed combinations but you continued to suffer 4 several -- quite a bit of side effects from those drugs? ANSWER: Yes. I've had side effects from all the drugs I' ve taken until probably the second from last combinati on that I had taken and they've all -- they've all giv en me different kinds of side effects but they all bri ng me back to the same place where I'm kind of just le ft not being able to do or live my life the way that I want to, yeah, and that's quite sad actually.
1,988	20	QUESTION: You say you consider that all the treatment you'v e had over the years has worked if you don't include the side effects. ANSWER: It has and I've got to say, you know, the care th at I have from my current HIV doctor has been exemplar y. He's one of the best doctors I've ever had and he w as actually the first doctor that ever acknowledged to me that what happened was wrong and I can't tell you t he healing that took place in that. There was so much healing that took place in his acknowledgement that what happened was wrong. Yeah, and I have so much respect for him as a doctor and as a human being as well.
1,989	20	QUESTION: More recently you've started another new drug and your skin has changed. ANSWER: Yes. 5
1,990	20	QUESTION: Can you talk to us about that. ANSWER: Yeah, so I used to go quite a nice colour in the sun and now I just go bright red so I look like bit of a lobster and it's very weird because it doesn't -- there's no -- like it doesn't show up on any of the fact sheets or anything like that but this only started since I started taking this medication. So , you know, I kind of am -- it can be the only thing that it is, in my opinion, you know, and I'm not a scientist and I'm not a doctor but logic would te ll me that something starts there, you know. That's probably what the cause is.
1,991	20	QUESTION: That's caused you quite a lot of emotional distre ss. ANSWER: Yes. It shut me down for about a year. I didn't want to leave the house. Yeah, the amount of shame that I carried around that was horrendous and it just paralysed me and, again, I just started playing the Play Station. That seems to be my coping mechanism at times but, yeah, it kept me very isolated is what I 'm trying to say.
1,992	20	QUESTION: You've also had treatment for the hepatitis C. ANSWER: I have.
1,993	20	QUESTION: You started that at the end of 2017 and you've cl eared the virus? ANSWER: Mm-hm.6
1,994	20	QUESTION: Why didn't you have interferon treatment earlier? ANSWER: So in the late 1990s I met with a doctor and he w as quite insistent that I go on interferon. I'd done a little bit of research around hepatitis C before going to see this doctor, given what had happened t o me in the past, and I knew that I was never going t o go on to interferon. I'd had too much information about the damage it had caused and the side effects it had caused and I point blank refused to go on interferon and -- yeah, I was not met with the most , you know, active kind of -- he wasn't open to my id ea because he was a professor of such and such and I w as just a patient, really. But yeah I point blank refused and they tried several times. They were quite aggressive in their approach with that actually, in trying to get me to go on an interferon-based hepatitis C treatment. My chances of clearing it were something like 6 per ce nt and I was like for the amount of side effects that you're talking about, 6 per cent, I'm not going to -- no, and I just refused.
1,995	20	QUESTION: Then later on the hospital wanted to put you on a trial which did include interferon again. ANSWER: Yes.
1,996	20	QUESTION: And you refused again. 7 ANSWER: That's correct.
1,997	20	QUESTION: You've had some difficulties accessing other medi cal care, particularly dental care. ANSWER: Yes.
1,998	20	QUESTION: What can you tell us about that? ANSWER: I remember being a child and my Mum finding it re ally difficult for her to find a dentist for me to go to and then that continued into my adolescence and whe n I started to take care of my own kind of medical needs, I found it so difficult to find a dentist th at would treat me, and they would say that it was beca use their books were full. But I met one dentist who w as a particularly kind man, actually, and he said to m e, "Look, that's probably not the truth", and he wrote me a letter for a community dentist and if it hadn't h ave been for him, actually, I don't think I'd have ever received any proper dental care, but he wrote them a letter expressing he thought it was an outrage th at I wasn't offered the dental care that someone in my position needs, and the community dentist took me o n and I've been seeing them since, yeah.
1,999	20	QUESTION: You've said a few things about your mental health and the real challenges you faced, both before you had the treatment and during the treatments that you've had . ANSWER: Yes. 8

1,900

19

QUESTION: After you got the letter, what did you do? ANSWER: I went to see the doctor. The doctor, a local GP , he didn't know a lot about it at the time but he did f ind out, took the blood tests, which came back positive .

1,901

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QUESTION: So you'd gone to your GP in about August 1995, yo u got the results in September 1995. Exactly what did th e GP tell you when he told you you had hepatitis C? ANSWER: That I had -- obviously I had -- I had been given infected blood. This wasn't confirmed until some t ime later when I went into hospital and had another op. I had a -- when they removed -- whatever it's called.

1,902

19

QUESTION: A liver biopsy? ANSWER: They gave me a liver biopsy, yes.

1,903

19

QUESTION: So your GP referred you to your local district hospital. ANSWER: Yes.

1,904

19

QUESTION: You had the liver biopsy. ANSWER: Yes.

1,905

19

QUESTION: Do you remember what that showed? ANSWER: It was significant scarring.

1,906

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QUESTION: Did either the GP or the local district hospital tell you very much about what hepatitis C was? ANSWER: Not really, not much, no. Most of it came from m y elder daughter.

1,907

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QUESTION: Before we get to what your elder daughter could t ell you, I just want to ask you a little bit more about what you were told. Were you told anything about the treatments that might be available to you? By the GP -- ANSWER: I can't recollect that I was, no.

1,908

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QUESTION: Were you told anything of the risks of transmissi on? ANSWER: A little bit but not that I made anything much of it, no, not a lot.

1,909

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QUESTION: So what did you understand the situation to be be fore you started -- ANSWER: That I had been given this. But as it never affe cted me in any way, I'm afraid I didn't fuss too much ab out it. Life goes on.

1,910

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QUESTION: Now, as it happened, at that time your daughter w orked for a pharmaceutical company that produced interfer on. ANSWER: Correct.

1,911

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QUESTION: What did she tell you to do? ANSWER: She advised me to go to -- down to Exeter, the Ro yal Devon & Exeter Hospital. She said they had the bes t hepatologists down there and I asked to be treated there. I saw the doctor down there and, as I have said in my statement, eventually treatment started.

1,912

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QUESTION: It was your daughter, wasn't it, that explained t o you a little bit more about what hepatitis C actually w as? ANSWER: Well, she did. She did then say how infectious i t was and how careful I should be but, I mean, I'm sorry but I did not, as it really didn't affect me that much, I was not aware of the dangers of -- too much of passing it on. I mean, Fiona did stress this.

1,913

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QUESTION: But you hadn't been told that by your GP or the district hospital? ANSWER: It hadn't been stressed to me at all.

1,914

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QUESTION: That very much came from your daughter? ANSWER: That very much came from my elder daughter, yes.

1,915

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QUESTION: And then subsequently from the Royal Devon & Exet er? ANSWER: Definitely from Royal Devon & Exeter, yes.

1,916

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QUESTION: You were then looked after by the Royal Devon and Exeter throughout your treatment until 2017 when yo u were discharged from their care? ANSWER: Yes.

1,917

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QUESTION: Through that time with the Exeter Hospital, they also then explained to you exactly what hepatitis C was and the risks in relation to transmission. ANSWER: Yes. The hepatology nurse down there who in fact treated me and I think after all these years she's still, the same nurse is still there in charge of i t, and she did explain that she was going into prisons and various different things and how dangerous it w as and how careful I should be.

1,918

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QUESTION: When you went to the Exeter Hospital there's just one point that I think is helpful for us to hear. You went in for your appointments, didn't you, and on t he same day you had your blood tests or fibroscan or whatever you were going in for and then saw the consultant on the same day? ANSWER: That's right. I did. I mean, luckily the train is -- Tobecombe station is just down the road from me and I can get on the train, go straight to Exeter and g et a bus up to the hospital. This was particularly important as when I was on the treatment I was warn ed that I could get all sorts of reactions.

1,919

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QUESTION: But even before you were on the treatment, if you had to go for any tests or scans, they were done on the same day as -- ANSWER: Yes.

1,920

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QUESTION: -- when you saw the consultant got the results? ANSWER: Well, as I had some distance to travel I rather insisted on that and I said, "For goodness sake, yo u know, I really don't want to be going up and down a ll the time. I want it all done on the same day", whi ch they complied with.

1,921

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QUESTION: In 2005 you started treatment to clear the virus. ANSWER: Yes.

1,922

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QUESTION: You had interferon and ribavirin for about six mo nths? ANSWER: Exactly, yes.

1,923

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QUESTION: You were warned that there would be very bad side effects. ANSWER: I was warned that I could have very bad, which is why I should not drive, I should go on the train which was quite simple for me.

1,924

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QUESTION: How did you feel while you were on the treatment? ANSWER: It didn't affect me at all. I was one of the luc ky ones.

1,925

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QUESTION: You were able to carry on working? ANSWER: Yes.

1,926

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QUESTION: You had no real physical symptoms at all? ANSWER: No, none whatsoever.

1,927

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QUESTION: And you successfully cleared the virus first time ? ANSWER: Yes.

1,928

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QUESTION: So you were discharged from the Royal Exeter in August 2017? ANSWER: I was going every year, annually, for blood tests and fibroscans and all of the newer ways of scanning. Yes, every year. Fortunately, you know, there was not many changes.

1,929

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QUESTION: You feel you received really excellent care from the Royal Exeter? ANSWER: I did receive excellent care from Exeter, yes.

1,930

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QUESTION: From the date you were told you had hepatitis C u ntil you were told you'd cleared the virus you obviously said that you had very few physical effects but how did you feel mentally? ANSWER: Once I knew what had happened, I felt it was rath er like a time bomb that could go off at any time. Yo u know, it had been actually drummed into my head wha t I had got and how lucky I was and then I thought, well, for goodness sake this can ... I realised the n the situation I was in and not a nice place to be.

1,931

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QUESTION: Can you tell us any more about how you were feeli ng during that time? ANSWER: Well, not really it was just I never new quite wh at 0 was going to happen or what could happen. I had be en told by the hepatology nurse in Exeter, you know, v ery graphically, I had seen others in clinics down ther e and, you know, what could happen to me and fortunat ely it never did.

1,932

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QUESTION: You have described it in your statement as in the years before you cleared hepatitis C it was like living with a time bomb and constantly waiting for it to go off. ANSWER: Exactly.

1,933

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QUESTION: Your daughters have said that you're one of those people who just gets on with things. Was that your approach to it? ANSWER: Yes. Well, I just feel, you know, I mean, we're all here, we've got to make the best of it.

1,934

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QUESTION: In all of that time did you face any stigma from your infection? ANSWER: Not really, no. Definitely not. I didn't hide i t but I didn't tell everybody.

1,935

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QUESTION: There was one -- ANSWER: I told more people about the fact I was coming up here, actually.

1,936

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QUESTION: There was one occasion, though, wasn't there, whe re you were asked initially to be on television? ANSWER: This was early on with the Liver Trust and they 1 interviewed me on the farm and I wasn't considered angry enough to be used, put it that way.

1,937

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QUESTION: You were interviewed for the television to explai n what you'd gone through with the whole blood scanda l and they interviewed you so you could make a case. ANSWER: That's right. Well, I don't think they wanted -- I wasn't newsworthy, put it that way, or I didn't p ut it over as strongly enough for them.

1,938

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QUESTION: You weren't angry enough -- ANSWER: I wasn't angry enough --

1,939

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QUESTION: -- so it wouldn't have the impact. ANSWER: No.

1,940

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QUESTION: You have received some payments from The Skipton Fund. ANSWER: Yes.

1,941

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QUESTION: Do you have any observations you want to make abo ut the funds? ANSWER: The only observation -- I mean, I have received i t and obviously still am but I do object strongly to the fact that we were given through no fault of our own infected blood, and why should anybody have to go w ith means testing or anything else for something which was not their fault? I mean, I think it is -- you know, it's quite wrong. We never should have been in this situation and why should anybody be means tested? 2

1,942

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QUESTION: Those are the questions I have for you. Is there anything else you would like to say? ANSWER: I think the donations part of it, blood donations part, is important. I can't give any exact dates but -- I want to stress really that this whole situation should never have happened and why has it taken so long?

1,943

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QUESTION: Just on the blood donations, we picked up on that earlier but just to clarify you are confident you d id give blood prior to the look-back? ANSWER: Yes.

1,944

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QUESTION: But you're worried about whether you also gave bl ood after the look-back? ANSWER: I could have but I mean, as I said, it's quite a long time ago. I don't keep records of this. My local GP surgery have been very good at finding letters whic h I've submitted to you, you know, over the operation s and things like that but somebody's probably got a record somewhere.

1,945

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QUESTION: Steven, you were diagnosed with severe haemophili a A when you were about 15 months old. ANSWER: That's correct.

1,946

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QUESTION: Initially you were treated with cryoprecipitate. ANSWER: Yes.

1,947

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QUESTION: Then in the late 1970s/early 1980s when you were about two or three you were given Factor VIII. ANSWER: That's correct.

1,948

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QUESTION: Are you aware of your mother being told anything of the risks involved in the change to your treatment? ANSWER: Not that I'm aware of, no, unfortunately, and my mother's no longer alive for me to obtain that information since the Inquiry started, so ...

1,949

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QUESTION: At first you received your Factor VIII in hospita l? ANSWER: That's correct.

1,950

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QUESTION: Then when you were about seven or eight your Mum was taught to administer it at home. ANSWER: I believe so, yes. It was around that time. It' s a little bit vague, foggy but, yes, it's around tha t time.

1,951

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QUESTION: Paul, could we have document 1139002, please. If you look in front of you, the document is on the screen so you can see exactly what we are all seeing. On 18 June 1984, a blood sample was taken from you and you tested positive for HIV; is that right? ANSWER: Yes, that would appear right, yes.

1,952

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QUESTION: But your recollection and your understanding from your mother was that she wasn't told that you'd tested positive for HIV until about 1985 or 1986? ANSWER: Yes, that's what I understand. Yes, that's what she told me when we discussed it.

1,953

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QUESTION: As you said, sadly, your mother has now passed aw ay. ANSWER: Yes.

1,954

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QUESTION: So you are not very sure what she was told but yo u think she was told, either then or subsequently by a social worker, that your life expectancy would be shortened and you were more at risk of infection an d illness? ANSWER: That's correct, yes. That was what my Mum had re lated to me once she had told me that I'd been infected, yes.

1,955

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QUESTION: That was really the limit of what she was told at that point? ANSWER: Yes. My Dad has a slightly different recollectio n of it. His was that -- my Dad came out of that room a nd he said [redacted] after he came out the room with the social worker at that time because in some way he blamed himself. I'm not quite sure why that was bu t, yes, he felt that the information they received was particularly unhelpful and didn't really offer them the support that they probably needed actually.

1,956

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QUESTION: How did you find out that you were HIV positive? ANSWER: So I found out when I was 13. My Mum had taken m e to a medical for -- a Department of Work and Pensions medical. I believe it was for an application for Disability Living Allowance and my Mum and the doct or were talking and I recalled my Mum saying HIV and that's how I kind of remember hearing it for the fi rst time. I don't recall hearing it before then, although, that being said, there was stuff in my family that had changed prior to that, the way that my parents had treated me and stuff like that. That became apparent earlier now looking back. But, yes, that's how I initially heard and then a few weeks later I was reading an article in the newspaper and there was a TV personality's son had died from AIDS and I said to my Mum, "That's what I 've got, isn't it", and she went, "Yeah, yeah".

1,957

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QUESTION: At about the same time you were going through pub erty, noticing girls. ANSWER: Yes.

1,958

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QUESTION: So your Mum booked an appointment for you to talk to a doctor about your diagnosis? ANSWER: Yes.

1,959

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QUESTION: Can you tell us about that? ANSWER: I remember going to -- my care was under the Hammersmith at the time and I remember seeing a doc tor that I'd never seen before and I don't recall ever seeing again actually, and we sat down and we start ed to have a conversation but, obviously, sexual transmission and that kind of stuff and, yeah, and the way it was conveyed was -- well, the way I left the meeting was I felt that I was a danger to people an d that, you know, it was probably a better idea for m e to just avoid that whole scenario of getting involv ed with girls and stuff like that. It just -- my wors t nightmare would have been to infect someone else.

1,960

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QUESTION: You were 13. ANSWER: Yes.

1,961

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QUESTION: You were at that meeting on your own? ANSWER: That's correct, yes.

1,962

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QUESTION: Without your parents? ANSWER: I don't recall my Mum being there actually, no.

1,963

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QUESTION: With a doctor who you'd never seen before and, as far as you are aware, you weren't treated by again? ANSWER: No, I don't think so.

1,964

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QUESTION: What did that doctor tell you about your life expectancy as well? ANSWER: He implied that my life expectancy would be short er and that I'd probably had four or five years to liv e and that, basically, if I had anything that I wante d to do I should go and do it because my time was goi ng to be limited. That was particularly difficult for -- you know, I don't know any 13-year old that would have had th e emotional intelligence to be able to comprehend wha t that meant, you know, and it influenced every major decision I made in my life thereafter, you know, an d I made some bad choices along the way. But, you kn ow, it certainly had a massive impact on me. You know, I would fail to articulate actually the impact it h ad on me.

1,965

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QUESTION: Your mother was also told at some point that you had hepatitis C. ANSWER: That's correct.

1,966

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QUESTION: But you're not entirely sure when that was. ANSWER: I don't recall when that was, but I was actually told that in a very off-the-cuff kind of way.

1,967

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QUESTION: Can you tell us how you were told? ANSWER: I was in a routine appointment with a haematologi st and he looked through my records and he said, "Oh, you've got hepatitis C as well", and for some reaso n I'd already known that. I'm not sure how I really knew that but I went, "Yeah, it's okay, I already k now that", and that was the end of the conversation. N ot really understanding the magnitude of it really.

1,968

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QUESTION: As far as you're aware, were you given any inform ation about hepatitis C, how to manage it and the risks involved? ANSWER: No, none at all.

1,969

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QUESTION: You said that you reacted very badly to the news at 13 -- ANSWER: Yes.

1,970

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QUESTION: -- that you had four to five years to live. ANSWER: Yes.

1,971

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QUESTION: You in fact left school at that point. ANSWER: Yes, I kind of made a conscious decision that I w asn't going to be alive long enough to use an education, so what was the point of having one? You know, and it 's probably one of the regrets that I have today, actually, that I threw away the opportunity for a really good education, actually, because I'd work ed really hard to get into quite a prestigious seconda ry school, my teachers had quite high hopes for me, yo u know, they spoke about Oxford and Cambridge and I would have been the first member of my family to go to university had that transpired. Yeah, it's one of my regrets actually but, you know, given the information that I was given at the time there was a lot I wanted to do and I was a rea lly angry young man at 13, actually, because of it.

1,972

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QUESTION: How did that anger express itself? ANSWER: Firstly, I took to my bed for a year and played t he Megadrive for an obscene amount of hours and then I was quite, you know, I was quite a smart kid and where I grew up from I grew up on a council estate, you know, and I grew up quite poor. So our financi al situation was not great, so where I come from, if y ou want money, you have to go and do certain things to earn that money and in my world money creates choic es and then I could do what I wanted to do; so that wa s kind of what I chose to do.

1,973

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QUESTION: You went off the rails for about five or seven ye ars. ANSWER: Yes, maybe a bit longer than that but certainly I started doing things at about 14 or 15 that a 14 or 15-year old shouldn't have been doing. I engaged i n some criminal activity. Yeah, and you know it afforded me the choices to do what I wanted to do w ith my life, and what it done, it gave me the opportuni ty to regain some power, actually, because I'd felt th at all my power and all my choices had been taken away from me, and what it did do is it gave me the opportunity to exert some power and some control an d actually to be angry towards society because I felt that I carried huge amounts of societal shame for many, many years. Yeah, and I turned all the anger inwards actually. I actually despised who I was.

1,974

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QUESTION: You have said that in engaging in that criminal activity you wanted to have killed yourself before the infections killed you? ANSWER: Yes. So I got to a certain point where I couldn' t cope with the internal conflict that was going on inside me and I wanted to -- I wanted to die on my own terms and I turned to drugs and alcohol and they provided me with a certain amount of ease and comfo rt for a little while. But I always had it in the bac k of my mind that they would, should I need them to, they would do the job for me. I wanted to die befo re I became symptomatic actually, because that would h ave been, where I grew up and where I come from, that would have been extremely difficult. My HIV status was the family secret and it would have been very difficult where we grew up for that to have become public knowledge, yeah.

1,975

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QUESTION: At the age of 15 you decided you would never have children? ANSWER: That's correct, yes.

1,976

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QUESTION: What was going through your mind? ANSWER: I'd started to have relationships with girls by t hen and, you know, the sheer terror of not being able t o share that information with them, you know, filled me 0 full of ... do you know what, I can't even articula te how it made me feel.

1,977

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QUESTION: You have said in your statement: "I felt I had no choice in the decision I made because I was worried and scared that I'd put the children at risk. I also believed I wouldn't live long enough to raise them." ANSWER: And that was my belief at that time, yeah. That was my belief at that time and it's one, in all the wor k I've done on myself over the years, it's the one th ing that I've never been able to change, unfortunately. Even today my last relationship ended because I was not prepared to have children, yeah.

1,978

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QUESTION: That spiral of criminal activity and mental healt h difficulties continued for a number of years? ANSWER: They did, yes, correct.

1,979

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QUESTION: When you were about 21, you made an attempt on yo ur life? ANSWER: I did, yeah.

1,980

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QUESTION: You also at about 21 had a cardiac event at your parents' house? ANSWER: That's correct.

1,981

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QUESTION: At that point, you realised that perhaps the HIV wasn't going to kill you? ANSWER: Yes, I -- you know, given what the doctors had to ld me 1 and how old I was I kind of figured out it probably wasn't going to kill me, yeah, and I kind of made t he decision to, kind of, change my life slightly then. I didn't change it completely, I'd be perfectly hon est about that, but I stopped doing a lot of what I was doing and tried to integrate back into society to s ome degree and, you know, I had reasonable -- you know, I met a girl, we moved in together, you know, stuff , that kind of fluffy stuff that happens, yeah.

1,982

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QUESTION: That was the beginning for you, wasn't it, of a gradual, a very long and very gradual process of, as you say, reintegrating and coming to terms a little bit with what did had happened. ANSWER: Yes, I had a -- yeah. I mean, coinciding with th at my Mum had been diagnosed with cancer many times throughout my adolescence and she got sick again in my early 20s and my Mum had been, through all of my medical stuff, had been kind of my one rock and as she got sicker and sicker and sicker I couldn't cope wi th the way that I felt and I went back to some of the substances that I had used previously, hoping they' d do for me what they'd done for me before, which was make my reality more bearable, and they didn't, and when my Mum died I was left in a worse position tha n I had ever been, and the time-line on my suicide 2 attempt was then, yeah, and ... yeah, my loving girlfriend at the time took me to the local mental hospital because I was clearly a little bit crazy, you know, and they took me in there and pumped me full of really nice drugs that make you feel nothing, and i t was there that I kind of decided, "You know what, I can't do this anymore. I'm going to destroy myself", yeah, and I made a decision that I wanted to change my life from then on and that's what I've tr ied to do since then.

1,983

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QUESTION: Can you tell us about the physical effects of the HIV on you. ANSWER: So I would have all the recognised side effects f or someone who's had HIV as long as I have. I have chronic insomnia; I have chronic fatigue; I have generalised anxiety disorder, you know, the list is extensive. They are the three ones that cause me t he most difficulties today. Social interaction is particularly difficult for me. You know, this is a very big arena for me to b e around but, yeah, some of them cause me -- they com e in waves, you know. Some days are better than othe rs.

1,984

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QUESTION: Alongside that the hepatitis C has caused chronic fatigue? ANSWER: Yeah. 3

1,985

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QUESTION: You have had a variety of treatments over the yea rs. If we start off with the HIV -- ANSWER: Yes.

1,986

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QUESTION: What can you tell us about the side effects of yo ur treatment with AZT that you had in your late teens. You had it in combination with some other medicatio n. ANSWER: Yeah, I think my first combination was -- I want to say it was eight or twelve pills a day and I ... it completely just, it wiped me out is the best way I can describe it. You know, I found it difficult to kee p food down. I found it difficult to keep water down at some times. I broke out in something called a nevirapine rash, and that is probably the most difficult side effect that I had experienced in my early combinations because it made me look like crocodile man. All my skin was very flaky and, you know, people would move away from me on public transport and if that didn't, you know, it just impounded and made worse the societal shame that I' d carried for all those years because, you know, ther e was actually people physically manifesting that to me that, as it goes, you know what, you need to stay a way from this guy.

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QUESTION: After a couple of years on that combination you changed combinations but you continued to suffer 4 several -- quite a bit of side effects from those drugs? ANSWER: Yes. I've had side effects from all the drugs I' ve taken until probably the second from last combinati on that I had taken and they've all -- they've all giv en me different kinds of side effects but they all bri ng me back to the same place where I'm kind of just le ft not being able to do or live my life the way that I want to, yeah, and that's quite sad actually.

1,988

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QUESTION: You say you consider that all the treatment you'v e had over the years has worked if you don't include the side effects. ANSWER: It has and I've got to say, you know, the care th at I have from my current HIV doctor has been exemplar y. He's one of the best doctors I've ever had and he w as actually the first doctor that ever acknowledged to me that what happened was wrong and I can't tell you t he healing that took place in that. There was so much healing that took place in his acknowledgement that what happened was wrong. Yeah, and I have so much respect for him as a doctor and as a human being as well.

1,989

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QUESTION: More recently you've started another new drug and your skin has changed. ANSWER: Yes. 5

1,990

20

QUESTION: Can you talk to us about that. ANSWER: Yeah, so I used to go quite a nice colour in the sun and now I just go bright red so I look like bit of a lobster and it's very weird because it doesn't -- there's no -- like it doesn't show up on any of the fact sheets or anything like that but this only started since I started taking this medication. So , you know, I kind of am -- it can be the only thing that it is, in my opinion, you know, and I'm not a scientist and I'm not a doctor but logic would te ll me that something starts there, you know. That's probably what the cause is.

1,991

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QUESTION: That's caused you quite a lot of emotional distre ss. ANSWER: Yes. It shut me down for about a year. I didn't want to leave the house. Yeah, the amount of shame that I carried around that was horrendous and it just paralysed me and, again, I just started playing the Play Station. That seems to be my coping mechanism at times but, yeah, it kept me very isolated is what I 'm trying to say.

1,992

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QUESTION: You've also had treatment for the hepatitis C. ANSWER: I have.

1,993

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QUESTION: You started that at the end of 2017 and you've cl eared the virus? ANSWER: Mm-hm.6

1,994

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QUESTION: Why didn't you have interferon treatment earlier? ANSWER: So in the late 1990s I met with a doctor and he w as quite insistent that I go on interferon. I'd done a little bit of research around hepatitis C before going to see this doctor, given what had happened t o me in the past, and I knew that I was never going t o go on to interferon. I'd had too much information about the damage it had caused and the side effects it had caused and I point blank refused to go on interferon and -- yeah, I was not met with the most , you know, active kind of -- he wasn't open to my id ea because he was a professor of such and such and I w as just a patient, really. But yeah I point blank refused and they tried several times. They were quite aggressive in their approach with that actually, in trying to get me to go on an interferon-based hepatitis C treatment. My chances of clearing it were something like 6 per ce nt and I was like for the amount of side effects that you're talking about, 6 per cent, I'm not going to -- no, and I just refused.

1,995

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QUESTION: Then later on the hospital wanted to put you on a trial which did include interferon again. ANSWER: Yes.

1,996

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QUESTION: And you refused again. 7 ANSWER: That's correct.

1,997

20

QUESTION: You've had some difficulties accessing other medi cal care, particularly dental care. ANSWER: Yes.

1,998

20

QUESTION: What can you tell us about that? ANSWER: I remember being a child and my Mum finding it re ally difficult for her to find a dentist for me to go to and then that continued into my adolescence and whe n I started to take care of my own kind of medical needs, I found it so difficult to find a dentist th at would treat me, and they would say that it was beca use their books were full. But I met one dentist who w as a particularly kind man, actually, and he said to m e, "Look, that's probably not the truth", and he wrote me a letter for a community dentist and if it hadn't h ave been for him, actually, I don't think I'd have ever received any proper dental care, but he wrote them a letter expressing he thought it was an outrage th at I wasn't offered the dental care that someone in my position needs, and the community dentist took me o n and I've been seeing them since, yeah.

1,999

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QUESTION: You've said a few things about your mental health and the real challenges you faced, both before you had the treatment and during the treatments that you've had . ANSWER: Yes. 8