pnadel/npi_all_transcripts · Datasets at Hugging Face

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600	6	QUESTION: Don't worry about that. We understand. After the birth of your daughter in January 2005 you, because of the chemotherapy, because of the compromised immune system, you experienced a range of chest infections, pneumonia, you were admitted to hospital and then April 2005 with a particular lung condition you were diagnosed? ANSWER: Yes.
601	6	QUESTION: Bronchiectasis. ANSWER: Bronchiectasis.
602	6	QUESTION: Then 2006 you started on a new drug Truvada and t hen you 3 began to experience stomach pains? ANSWER: Yes.
603	6	QUESTION: What can you tell us about that? ANSWER: So periodically I would get these incredible cram ps which weren't normal cramps but they were excruciat ing kind of doubled-up pain and then they would subside and the hospital couldn't really find out what was goin g on until August or July/August 1998 when I --
604	6	QUESTION: 2008? ANSWER: 2008, sorry, yes, when I was taken into hospital.
605	6	QUESTION: Just prior to that I think you'd also started rec eiving treatment for the hepatitis C; is that right? ANSWER: Yes.
606	6	QUESTION: Interferon? ANSWER: And Ribavirin.
607	6	QUESTION: Ribavirin, 48 weeks? ANSWER: Yes.
608	6	QUESTION: What was that like? ANSWER: That was worse than the chemo. It just sucks the very life out of you physically. It's okay for the firs t few weeks because your body is getting used to it but y ou soon get on a very low, kind of a low trajectory do wn, and it's not only physical but it's mental. You're depressed, you haven't got any energy, you haven't got anything, you're short-tempered and like, but 4 I didn't -- I couldn't contemplate stopping. I'm n ot the type of person to stop. That might be a good t hing and it might be a bad thing. So I just carried on. But then I did have to stop after 43 weeks because I got some complications whereby I started to manif est a de-compensated liver and ascites and portal hypertension so a whole raft of liver disease-relat ed illnesses.
609	6	QUESTION: Then August 2008 you were admitted to hospital an d placed in intensive care and in an induced coma. W hat can you tell us about that? ANSWER: I was going to say very little because I was asle ep at the time. I have it on good authority that I was talking rubbish before they took me off to the thea tre, apparently, because I had some sepsis at the time a nd my heart stopped when I was on the theatre table. The y did a laparotomy on me and they took out what they coul d but it all came out in one lump because it was all fuse d together. They found a bit of debris in there like something had burst out of my guts and they cleaned it out an d they thought, well, we can't see anything, we'd bet ter put him all back together again. So they did that, put it all back in, sewed me up and put me on to ICU. Unfortunately, once they'd -- they wanted to take 5 me out of the induced coma. I didn't want to come out of the induced coma, so then they started to get a bit worried and our vicar, who's now a bishop actually, he came and visited and I had my funeral arranged.
610	6	QUESTION: I think we've got a picture. It's the other pict ure that we had up you have provided us with, which is you in hospital in this time when you were in a coma. ANSWER: It's lovely.
611	6	QUESTION: You weren't expected to survive. ANSWER: No, no. I was missing the Olympics as well at th e same time.
612	6	QUESTION: I think you spent quite a few weeks in hospital. ANSWER: Yeah.
613	6	QUESTION: And months of recovery. ANSWER: Yeah and I cried when I came out because I didn't think I would come out.
614	6	QUESTION: You did manage to return to work I think in 2010. ANSWER: I did.
615	6	QUESTION: You had a further course of treatment for the Hep C in 2015 -- ANSWER: I did.
616	6	QUESTION: -- which resulted in the virus clearing? ANSWER: Absolutely, yes.
617	6	QUESTION: But that's not been the end in terms of health pr oblems. You've had subsequent hospital readmissions?6 ANSWER: Yes, yes. So right now every day's an exciting d ay health-wise. You don't know what your night's goin g to be like, whether you're still going to have night s weats and so my liver is cirrhotic and so I have to be constantly aware of things that may or may not be g oing wrong. My lungs are extremely damaged because of the bronchiectasis and, as a consequence of that, I had a couple of years ago a number of infections but particularly on two occasions the infection was in and around where the scarring in my lungs was which the n resulted in bleeding into my lungs which then meant that I was generating a lot of fresh blood, which is not a particularly good thing if you're a haemophiliac.
618	6	QUESTION: You described all the side effects or some of the side effects of the many treatments and drugs you have h ad to have. ANSWER: Yes.
619	6	QUESTION: Vomiting, osteoporosis, anaemia, memory gaps, tir edness, fatigue, dizziness. ANSWER: Yes.
620	6	QUESTION: What about overall the emotional and mental impac t of everything that you've been recounting to us? ANSWER: Good question. Emotionally I think that what it' s done is actually sharpened my sense for life and 7 relationships. I tend and have tended for a while now to not worry about small talk so much and I have tr ied, although I'm not particularly great at this but tri ed to -- for those people that I have invested in and for those people that I get to meet, I will give them t ime because I think relationships is something that is worthwhile and life gets in the way of relationship s sometimes. When you go through near-death experiences, for me anyway, it kind of re-balances, it kind of puts thi ngs in a different perspective, so I don't -- I tend no t to worry so much about things that I probably should w orry about but I tend to worry more about people and whe ther I'm being honest and true to them. The other thing about emotional impact is for a while at the beginning of all of my illnesses or my infections we didn't share the news with many peopl e because we didn't want to be always the people who had HIV. We didn't want it to be the sole conversation that we had because that would be boring and that would be wearing and we hoped that we were a bit more intere sting than that. But there is a definite impact and cost to your friends when you share stuff and whilst I'm and man y of you are the ones going through those illnesses, and also 8 those who are no longer here, there is a huge impac t on family because they carry you and -- but the focus is always on the patient, the person who's suffering. But I know that I wouldn't be here without friends and family.
621	6	QUESTION: Can I ask you about your work and career and how that's been affected by your diagnoses and your illnesses. ANSWER: Yes. So I had or have a fantastic job. I'm not there, I'm off sick at the moment. It's challenging, it's interesting, it's intellectually demanding and it's great. I loved it and I felt as though I was makin g a difference and, you know, I was doing well. But my illnesses have meant that I work for -- it's a glob al organisation and there are always opportunities to go overseas and, in fact, there's kind of some expecta tion that you will go overseas so that it's part of your career progression. But that's not -- that's never been a practical option for me, one, because of the medi cal treatment overseas and, two, because of my health n ot being sustainable to do that. Work has been extremely supportive in as much as they, yes, they've stood by me and they understand so ... but it's slightly disappointing that I've mi ssed out on certain career progression and also probably associated with that some financial remuneration as well 9 but hey-ho, that's life.
622	6	QUESTION: On the question of travelling abroad you and your family went on holiday to the States to Disneyland in 2014 ? ANSWER: We did.
623	6	QUESTION: So what happened? ANSWER: I had previously with work gone to America and th is was during the time you needed to declare your HIV stat us because it is a communicable disease, so before you went you needed to get a visa and then associated with t hat visa you needed to demonstrate you were going to co me back and you weren't going to be a burden on the American state, et cetera. In of itself it's, you know, it's not an easy process but you can do it. In 2014 the visa restriction had been removed and so we went to on holiday to Florida. We were fortu nate to have that opportunity and I thought it would be fine. So didn't have a -- I didn't go for a visa because there was no need because it wasn't a communicable diseas e listed on their entry criteria but, because of my previous visas on their system, they pulled me to o ne side. Heather and the kids were left in luggage re claim or Customs or somewhere and I was taken round into a room and held there for half-an-hour while they t ried to see whether I was eligible to come in or not. It wasn't until I told them to Google entry 0 requirements into the United States that they belie ved what I was saying, so that was fun.
624	6	QUESTION: You have talked also in your statement about some of the practical consequences of the infections that you h ave, cost of travel insurance prohibitively high? ANSWER: Yes. I mean, I think it's -- I can understand wh y it is so high but I didn't ask to be in this situation an d it just seems so -- it just seems so wrong that if you have got multiple illnesses that aren't your -- you have n't asked for them, that you're actually then being penalised, you know. So essentially travel insuran ce, the quotes are family of four can go on holiday but it's actually a family of five, let's say, because your insurance will actually be at least equivalent to another individual adult going on holiday. That's my experience.
625	6	QUESTION: And difficulties in obtaining any form of life in surance as well? ANSWER: Well, that's completely out of the question, so . ..
626	6	QUESTION: The treatment that you described that you and Hea ther had in order to be able to start your family -- ANSWER: Yes.
627	6	QUESTION: -- you paid for that privately? ANSWER: We did, yes. There was no -- there was no opport unity within the Macfarlane Trust to -- it wasn't part of 1 their criteria to actually fund those things and th ere was no other kind of NHS because even though it was through the NHS and the Chelsea & Westminster Hospi tal, it was still viewed as partially private I think so you had to pay.
628	6	QUESTION: Dental care has been problematic as well? ANSWER: It has, yes. So earlier I have also experienced turning up for dental treatment and being confronted by wha t can only be described as someone that looks like they'v e just come from Mars. So they all suited and booted , masks like this and then you go into the room and everything's covered in plastic and then they kind of talk to you in this -- through their mask and say, "You okay", yeah, yeah, and they'll do the treatment and then that was it. Then more latterly, because of the variant CJD, I was not able to get dental care from the first de ntist I went to and then had to kind of go to the health authority to actually find someone within the area to actually provide dental care.
629	6	QUESTION: Can I then ask you, you mentioned the Macfarlane Trust -- ANSWER: Yes.
630	6	QUESTION: -- and you've said in your statement that you've had certain payments from the Macfarlane Trust, from th e 2 Skipton Fund? ANSWER: Yes.
631	6	QUESTION: But you have talked about the time-consuming natu re of the applications, seeing why others can struggle an d having to jump through hoops and I wondered if you could elaborate upon that. ANSWER: Yes. So it's great that these grants are made available, let me just say that, and what's not so great is the fact that the forms and the justification of some of the applicants that you make are just really convoluted and so you might have to get three quote s for something before you submit it, you might have to g et various letters from medical practitioners to demonstrate you are who you say you are or you have what you say you have and then when you submit the claim , then you might actually find that they will actuall y ask you for some more information. So it's -- what strikes me is that there tends to be a lack of transparency around the criteria and I don't know why that is but, you know, that's what it strikes me as and also like the level of fortitude that you need to get through the process is -- it wouldn 't surprise me if people just gave up, to be honest.
632	6	QUESTION: In relation to the current scheme, the EIBSS fund ing -- ANSWER: Yes. 3
633	6	QUESTION: -- what's been your experience in relation to tha t? ANSWER: I think in the previous incarnations of the trust , the Macfarlane Trust and the Skipton Fund, because they had been there for such a long time or relatively long time, I did sense that there were people there who had understood the community a bit more and had a relationship. With the new body, that isn't there. I guess that would make sense, given that they are all relativel y new to the job and they're new to the community. So th ere's not that level of interaction certainly -- well, ma ybe others have had more interaction but I certainly haven't.
634	6	QUESTION: You have expressed a concern in your statement ab out the impact of it being means tested. ANSWER: Yes. So I don't have a problem with people being means tested, I just think that sometimes people who are able to save will save because they want to save for the ir dependants. If you get to a point where you've sav ed too much, then that will then exclude you from some thing that you need because on the basis of that then you would need to use your savings because you have sav ings but you've got your savings because that's , you kno w, in my head anyway, I kind of earmarked that for when I 'm not here. 4 I can understand I think that definitely, you know, if funding is available then it should go to the most needy for sure, you know. I don't have an iss ue with that, I just think means testing is very -- is again another huge hurdle to jump in terms of like you create your own budget for a week or for a month or whatever and demonstrate that you have no residual income at the end of it. Okay, where do I start? So ...
635	6	QUESTION: Perry, those were my questions for you but do you have anything else you want to say, anything that's not been covered? ANSWER: I did make a note. I'll just see if you've cover ed it. Just to say that I really welcome this Inquiry and I wouldn't want to be in your or your shoes particu larly because I think you have a mammoth task. I would l ove and my own desire would be that there is transparen cy around what's happened in the past so that people i n the future can learn and so that some people will be ab le to get some closure. You can't -- you know, I think i t's impossible to reach closure for those that you've l ost when they shouldn't have been lost, so I think that was the only thing wanted to say.
636	7	QUESTION: And you were treated at the Birmingham Children's Hospital, initially with cryoprecipitate. ANSWER: Yes.
637	7	QUESTION: Your statement explains that from about late 1974 onwards you received cryoprecipitate at home. ANSWER: Yes.
638	7	QUESTION: You were about ten years old at the time. Was that partly for reasons of geographical distance from th e hospital? ANSWER: Yes. We lived about 25/30 miles away. So we were deemed -- yes, we could go on home treatment. So m y parents invested in a large deep freeze, because cr yo was quite a large commodity in those days, and, yes , we went from there, so ...
639	7	QUESTION: What was the effect of your haemophilia and your ne ed for treatment on your education as you were growing up? ANSWER: Same old story, really, with severe haemophiliacs. I did miss quite a bit of schooling, both, you know , secondary and junior. I didn't do too badly, but y es, I missed more than I should have done.
640	7	QUESTION: You record in your witness statement being told whe n you were relatively young -- and this is before you were informed of your infection through blood products -- that you wouldn't live past 35. ANSWER: No, that's right. That was quite a common thing on the ward at the Children's Hospital. When we used to miss -- if you were in there for more than two or three days, then they would try to give you basic schooling. Some of them were just -- the one nurse just said, "Well, you know, you may as well just ha ve a bit of a play, because you are not expected to li ve over 30, 35 years". So, you know, looking back on it, I don't know how I accepted that, but yes.
641	7	QUESTION: You said in your statement at some stage it made yo u resolve that you would live to at least 36. ANSWER: Well, yes, yes.
642	7	QUESTION: But you also say you were made to feel like a burde n to the NHS. ANSWER: Yes, very much so, because you didn't seem to fit i nto one category or another. It was odd, because you could sometimes walk about, so you weren't a disabl ed person, but you weren't -- you fell between two stools, if you like. Even though haemophilia is a disability, you were treated in a very strange wa y at the Children's Hospital, very strange.
643	7	QUESTION: Now, you were first offered Factor VIII products in 1977. You would have been early teens at that poin t. ANSWER: Yes.
644	7	QUESTION: You said in your statement you think it was by Dr Gilian Man but it could have been Dr Frank Hill. ANSWER: Yes, it was one of the two.
645	7	QUESTION: That was Factor VIII products by way of home treatment. ANSWER: Yes.
646	7	QUESTION: Can you recall what your parents or you were told about any risks? ANSWER: We weren't told of any risks and I have confirmed t hat with my parents. All we were told was that this wa s a groundbreaking medical development.
647	7	QUESTION: You said in your statement the impression was you w ere told that Factor VIII was "the miracle cure that wo uld solve all of our problems". ANSWER: Yes.
648	7	QUESTION: Your parents weren't told of risks of infection and you or they weren't warned to look out for any adve rse reactions to treatment. ANSWER: No, nothing at all.
649	7	QUESTION: You have also I think a recollection of being told by Dr Hill that the products were sourced from the United States. ANSWER: Yes, I do, yes.
650	7	QUESTION: We can see a list of the products that you received . Henry, can we have 1387002, please? We can see here particulars of blood products, batch numbers by mon th and year, and we won't obviously go through the det ail of all the batch numbers, but we can see here the v ast majority of the products that you received, with ve ry few exceptions, were Armour Factor VIII? ANSWER: Yes, that is correct.
651	7	QUESTION: If we just look at the next page as well, please, Henry, we can see that continuing through 1981, through the 1980s. In 1981 you fell ill after you had injected yourself with Factor VIII. What can you remember about that? ANSWER: Not a great deal, really. This isn't the glandular fever incident?
652	7	QUESTION: No. You said in your statement you subsequently learned that you were infected with hepatitis B at this time. ANSWER: Yes. I don't actually remember a lot about that, t o be honest, other than I was ill and that was it.
653	7	QUESTION: There are in your records, and you have recorded th is in your statement, positive tests for hepatitis B surface and core antibodies, May 1981. ANSWER: It turned out to be, yes.
654	7	QUESTION: Do you know whether you or your parents were told a t the time you were being tested for hepatitis B? ANSWER: No. I have asked them this question and no.
655	7	QUESTION: Were you told or your parents told that you had, in fact, tested positive for hepatitis B? ANSWER: No.
656	7	QUESTION: So in about early 1984 you fell ill with glandular fever. ANSWER: Yes.
657	7	QUESTION: Can we just have up on screen, please, Henry 138701 0 . We can see it's a letter from Dr Hill dated 20th January 1984 to you: "I am sorry to hear that you have glandular fever and hope that you are beginning to improve. I pres ume this is why you could not come to my clinic today." He offers further clinic dates. What do you recall about that episode of glandular fever? ANSWER: It was quite worrying, because I was planning to ge t married in the not too distant future. It was a horrendous illness. Although I have got severe haemophilia, I am not ill usually and I was bedridd en with this. I do remember that our local village doctor came out, our family doctor came out to see us, and he s aid to me, "I am diagnosing you with glandular fever, b ut I think you should see a specialist in haemophilia" . I genuinely believe he knew more than he was lettin g on, or wanted to let on professionally.
658	7	QUESTION: The way you have put it in your statement is that t he GP said that this fever would have been triggered b y something -- ANSWER: Uh-huh.
659	7	QUESTION: -- and that there were some things that were above his knowledge, or words to that effect. ANSWER: That's correct, yes.
660	7	QUESTION: With the benefit of hindsight -- ANSWER: Yes.
661	7	QUESTION: -- you now think that's around the time that you we re seroconverting. ANSWER: Yes, yes, because that just ties in with everything that we found out. The amount of people who have h ad glandular fever when they were seroconverting is almost 100%, so ...
662	7	QUESTION: I think you didn't, in fact, go and see the Haemophilia Centre. ANSWER: I didn't, no. Certainly not Frank Hill, but there you go.
663	7	QUESTION: In 1984, you married. ANSWER: Yes.
664	7	QUESTION: And your former wife will be giving evidence after you -- ANSWER: Yes.
665	7	QUESTION: -- this morning. Up to this point, apart from the illnesses you have described and apart from the obvious effects of the haemophilia that you have described, you were leading a busy, normal life? ANSWER: Yes, yes.
666	7	QUESTION: Working, good social life. ANSWER: Yes, very good.
667	7	QUESTION: Looking forward to marriage. ANSWER: Very good, yes. The haemophilia didn't really -- i t was just one of those things, you know. I just treated myself when I did and that was it, so ...
668	7	QUESTION: I think you and your partner had bought a house together. ANSWER: Yes, we did, yes.
669	7	QUESTION: At some point in the early part of 1985, you had a urinary infection and passed out. ANSWER: Yes.
670	7	QUESTION: Can you tell us what you remember about that and wh at happened immediately afterwards? ANSWER: Yes. We had only been married about a year, so [redacted] couldn't drive. My father picked me up. I was taken to A&E at the Queen Elizabeth Hospital, the Old Queen Elizabeth Hospital. I was on a troll ey and a junior doctor came to see me. He was stood there to my left, flicking through the notes, and h e just turned round and said, "This looks like HIV developing into full-blown AIDS", and that was it. I was -- well, I was already lying down, but I was floored, because I just -- I didn't even though wha t AIDS was anyway, really, and to be tested for it an d then to be told I was positive as such a casual thi ng, I didn't know what to do or what to say, so ...
671	7	QUESTION: As I understand it, you are not sure whether he use d the words HIV or not or HTLV-III. ANSWER: No, but I remember the word "AIDS" and "full-blown" . That's how ...
672	7	QUESTION: Now, there is no record of this in your medical records. ANSWER: Apparently not, no.
673	7	QUESTION: But I think it is right to say that the records you have got do not appear to be complete in any event. ANSWER: No, no, they are not.0
674	7	QUESTION: You don't, I think, have your GP records either. ANSWER: No. Mysteriously they vanished in 1985, 1984 or 19 85.
675	7	QUESTION: The only record that we have -- if we have up on screen, please, Henry, 1387013 -- prior to August 1 985 is the UKHCDO records. We will just look at that briefly. We can see there it says "Date first positive: 28th April 1985". That would be consistent -- ANSWER: Yes.
676	7	QUESTION: -- with your recollection of being given some information -- ANSWER: Yes.
677	7	QUESTION: -- in the way you have described in the first part of 1985. ANSWER: Yes.
678	7	QUESTION: But it is right, I should point out, if we go to th e next page, please, Henry, there is an obvious error on this page, because it says "Date condition diagnose d: 1st January 1999". You have no idea, I think, wher e that date comes from. ANSWER: No, no.
679	7	QUESTION: So the first reference in your actual medical recor ds to HTLV-III appears to be August of 1985, 1st August 1985. ANSWER: Yes. 1
680	7	QUESTION: We will just again look at a record in relation to that. 1387008, please. If we look down the very bottom of the page, we can see an entry for [redacted]. It says: "Married for 1 year. Wife pregnant." Then it says this: "HTLV-III status not known." Then there appears to be a further line under that, but this is the only form in which you have a copy of your records. ANSWER: Yes.
681	7	QUESTION: So we don't know what that further line might say. ANSWER: No, no.
682	7	QUESTION: As I understand your evidence, you and your wife di d go to see Dr Franklin on 1st August 1985. ANSWER: Yes.
683	7	QUESTION: You went to see him in part, at least, because your wife was pregnant. ANSWER: Yes.
684	7	QUESTION: And because you had this information -- ANSWER: Yes.
685	7	QUESTION: -- from the accident and emergency admission that y ou might have AIDS. ANSWER: Yes, yes.
686	7	QUESTION: And you wanted to talk about that with Dr Franklin.2 ANSWER: Yes.
687	7	QUESTION: Could we have up on screen, please -- it's a docume nt with a reference number for the next witness, Henry . So it is 1388002. So we can see the date is 1st August 1985, the date of that entry in your records, the date you we nt to see Dr Franklin. It is a letter from Dr Franklin -- we can just about see that at the bottom -- to Dr Jones, who was your wife's GP, not yours. ANSWER: Yes. He refused to have me.
688	7	QUESTION: It says this: "This 19-year-old girl who is the wife of a patient of mine who has severe haemophilia A came together with her husband to see me today. As you know, she is 3 to 4 months pregnant and would prefe r to terminate the pregnancy. Any child of this unio n would be a haemophilia carrier if female, but haemostatically normal if a male. There would therefore appear to be no grounds for a termination from the haemophilia point of view. "However, the current concern amongst the haemophiliacs regarding the acquired immune deficie ncy syndrome (AIDS) has been causing us to modify our advice to haemophiliac patients who wish to underta ke 7 doctors in the autumn of 1985 or indeed at any late r stage about whether you should tell other people or not about your infection? ANSWER: Yes. It was pretty much, "Don't tell anybody". He knew that we were a young married couple and -- yes , it was "Just don't tell anybody". Not that we were going to anyway, because we still didn't know what this was. So, yes.
689	7	QUESTION: [Redacted] is going to be giving evidence about thi s, but you were, as you describe in your statement, ve ry young, very frightened. ANSWER: Yes.
690	7	QUESTION: And bombarded with information about the risks of AIDS. ANSWER: Yes.
691	7	QUESTION: And that really continued for the following years. ANSWER: Oh, yes, yes.
692	7	QUESTION: You said in your statement that it was around this time that there was a change, a shift, in the atmosphere and workings of the Haemophilia Centre. ANSWER: Very much so. I didn't go -- after this diagnosis, I very rarely went to the haemophilia unit, but wha t was very, very noticeable is you used to go into th e waiting room and there were many, many, many chairs and it was full, always full. The clinic appointme nts 8 that I had afterwards, there was just one or two people or [redacted] and myself on our own, and tha t really struck out at us, you know, what's gone on? It was just so odd. Very, very odd. So ... But I basically stopped going to the clinic appointments. The arrogance of the doctors I was seeing, you couldn't ask them questions, really. T hey just told you what they wanted to tell you and that was it, so ...
693	7	QUESTION: It was some ten years later in 1995 that you found out that you had been infected also with hepatitis C. ANSWER: Apparently, yes.
694	7	QUESTION: Again, we will have a document up on screen. It is 1387006. It helps us date this. So it is 31st March 1995. It is from Dr Wilde, who by this time was your consultant, and it says this: "[You] attended the clinic this morning requesting hepatitis C serological testing, having been prompt ed to do so by a communication from the Haemophilia Society. The blood test was duly performed and he will be informed of his result." Now, the blood test was performed and you were informed of the result and it was positive. ANSWER: Yes.
695	7	QUESTION: But I think you don't believe this is a correct -- 9 ANSWER: No, I don't.
696	7	QUESTION: -- record of what triggered testing. ANSWER: No. I don't. Anybody in the room that knows me kn ows that I have little regard for the Haemophilia Socie ty. I would not have taken -- well, we would not have h ad any literature come through to us from the Haemophi lia Society, full stop. If by any chance we did, it wo uld have gone straight in the bin. So that does not ri ng true. Also, 1995, that's a very, very, very late date for hep C. I just think that is a letter of convenience, as far as I'm concerned. It ties everything up nicely for the records. So ...
697	7	QUESTION: And you don't know why you weren't called in for testing in relation to hepatitis C earlier than 199 5. ANSWER: No.
698	7	QUESTION: So precisely what triggered the test, it hadn't bee n done prior to this year? ANSWER: I don't know, but I hadn't sanctioned it, if it was .
699	7	QUESTION: And you have said in your statement that having received the hepatitis C diagnosis, at that time it was the bottom of your list of things for you to wo rry about. ANSWER: Very much so. I did get on with Dr Wilde, my haematologist. I went there for the -- I think it was 0 a clinic appoint. It wasn't just for the results, but he actually said, "I have the results of your hep C ". He said something like, "Do you really need to ask? " I just shrugged my shoulders and said, "No, not really". A bit further on in the consultation I sa id, "About this hep C". He said, "I wouldn't worry abo ut it. You have to prioritise things. Your haemophil ia is going to come above the hep C and HIV and AIDS i s top of your list". That was it. He really didn't speak much about it then.

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QUESTION: Don't worry about that. We understand. After the birth of your daughter in January 2005 you, because of the chemotherapy, because of the compromised immune system, you experienced a range of chest infections, pneumonia, you were admitted to hospital and then April 2005 with a particular lung condition you were diagnosed? ANSWER: Yes.

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QUESTION: Bronchiectasis. ANSWER: Bronchiectasis.

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QUESTION: Then 2006 you started on a new drug Truvada and t hen you 3 began to experience stomach pains? ANSWER: Yes.

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QUESTION: What can you tell us about that? ANSWER: So periodically I would get these incredible cram ps which weren't normal cramps but they were excruciat ing kind of doubled-up pain and then they would subside and the hospital couldn't really find out what was goin g on until August or July/August 1998 when I --

604

6

QUESTION: 2008? ANSWER: 2008, sorry, yes, when I was taken into hospital.

605

6

QUESTION: Just prior to that I think you'd also started rec eiving treatment for the hepatitis C; is that right? ANSWER: Yes.

606

6

QUESTION: Interferon? ANSWER: And Ribavirin.

607

6

QUESTION: Ribavirin, 48 weeks? ANSWER: Yes.

608

6

QUESTION: What was that like? ANSWER: That was worse than the chemo. It just sucks the very life out of you physically. It's okay for the firs t few weeks because your body is getting used to it but y ou soon get on a very low, kind of a low trajectory do wn, and it's not only physical but it's mental. You're depressed, you haven't got any energy, you haven't got anything, you're short-tempered and like, but 4 I didn't -- I couldn't contemplate stopping. I'm n ot the type of person to stop. That might be a good t hing and it might be a bad thing. So I just carried on. But then I did have to stop after 43 weeks because I got some complications whereby I started to manif est a de-compensated liver and ascites and portal hypertension so a whole raft of liver disease-relat ed illnesses.

609

6

QUESTION: Then August 2008 you were admitted to hospital an d placed in intensive care and in an induced coma. W hat can you tell us about that? ANSWER: I was going to say very little because I was asle ep at the time. I have it on good authority that I was talking rubbish before they took me off to the thea tre, apparently, because I had some sepsis at the time a nd my heart stopped when I was on the theatre table. The y did a laparotomy on me and they took out what they coul d but it all came out in one lump because it was all fuse d together. They found a bit of debris in there like something had burst out of my guts and they cleaned it out an d they thought, well, we can't see anything, we'd bet ter put him all back together again. So they did that, put it all back in, sewed me up and put me on to ICU. Unfortunately, once they'd -- they wanted to take 5 me out of the induced coma. I didn't want to come out of the induced coma, so then they started to get a bit worried and our vicar, who's now a bishop actually, he came and visited and I had my funeral arranged.

610

6

QUESTION: I think we've got a picture. It's the other pict ure that we had up you have provided us with, which is you in hospital in this time when you were in a coma. ANSWER: It's lovely.

611

6

QUESTION: You weren't expected to survive. ANSWER: No, no. I was missing the Olympics as well at th e same time.

612

6

QUESTION: I think you spent quite a few weeks in hospital. ANSWER: Yeah.

613

6

QUESTION: And months of recovery. ANSWER: Yeah and I cried when I came out because I didn't think I would come out.

614

6

QUESTION: You did manage to return to work I think in 2010. ANSWER: I did.

615

6

QUESTION: You had a further course of treatment for the Hep C in 2015 -- ANSWER: I did.

616

6

QUESTION: -- which resulted in the virus clearing? ANSWER: Absolutely, yes.

617

6

QUESTION: But that's not been the end in terms of health pr oblems. You've had subsequent hospital readmissions?6 ANSWER: Yes, yes. So right now every day's an exciting d ay health-wise. You don't know what your night's goin g to be like, whether you're still going to have night s weats and so my liver is cirrhotic and so I have to be constantly aware of things that may or may not be g oing wrong. My lungs are extremely damaged because of the bronchiectasis and, as a consequence of that, I had a couple of years ago a number of infections but particularly on two occasions the infection was in and around where the scarring in my lungs was which the n resulted in bleeding into my lungs which then meant that I was generating a lot of fresh blood, which is not a particularly good thing if you're a haemophiliac.

618

6

QUESTION: You described all the side effects or some of the side effects of the many treatments and drugs you have h ad to have. ANSWER: Yes.

619

6

QUESTION: Vomiting, osteoporosis, anaemia, memory gaps, tir edness, fatigue, dizziness. ANSWER: Yes.

620

6

QUESTION: What about overall the emotional and mental impac t of everything that you've been recounting to us? ANSWER: Good question. Emotionally I think that what it' s done is actually sharpened my sense for life and 7 relationships. I tend and have tended for a while now to not worry about small talk so much and I have tr ied, although I'm not particularly great at this but tri ed to -- for those people that I have invested in and for those people that I get to meet, I will give them t ime because I think relationships is something that is worthwhile and life gets in the way of relationship s sometimes. When you go through near-death experiences, for me anyway, it kind of re-balances, it kind of puts thi ngs in a different perspective, so I don't -- I tend no t to worry so much about things that I probably should w orry about but I tend to worry more about people and whe ther I'm being honest and true to them. The other thing about emotional impact is for a while at the beginning of all of my illnesses or my infections we didn't share the news with many peopl e because we didn't want to be always the people who had HIV. We didn't want it to be the sole conversation that we had because that would be boring and that would be wearing and we hoped that we were a bit more intere sting than that. But there is a definite impact and cost to your friends when you share stuff and whilst I'm and man y of you are the ones going through those illnesses, and also 8 those who are no longer here, there is a huge impac t on family because they carry you and -- but the focus is always on the patient, the person who's suffering. But I know that I wouldn't be here without friends and family.

621

6

QUESTION: Can I ask you about your work and career and how that's been affected by your diagnoses and your illnesses. ANSWER: Yes. So I had or have a fantastic job. I'm not there, I'm off sick at the moment. It's challenging, it's interesting, it's intellectually demanding and it's great. I loved it and I felt as though I was makin g a difference and, you know, I was doing well. But my illnesses have meant that I work for -- it's a glob al organisation and there are always opportunities to go overseas and, in fact, there's kind of some expecta tion that you will go overseas so that it's part of your career progression. But that's not -- that's never been a practical option for me, one, because of the medi cal treatment overseas and, two, because of my health n ot being sustainable to do that. Work has been extremely supportive in as much as they, yes, they've stood by me and they understand so ... but it's slightly disappointing that I've mi ssed out on certain career progression and also probably associated with that some financial remuneration as well 9 but hey-ho, that's life.

622

6

QUESTION: On the question of travelling abroad you and your family went on holiday to the States to Disneyland in 2014 ? ANSWER: We did.

623

6

QUESTION: So what happened? ANSWER: I had previously with work gone to America and th is was during the time you needed to declare your HIV stat us because it is a communicable disease, so before you went you needed to get a visa and then associated with t hat visa you needed to demonstrate you were going to co me back and you weren't going to be a burden on the American state, et cetera. In of itself it's, you know, it's not an easy process but you can do it. In 2014 the visa restriction had been removed and so we went to on holiday to Florida. We were fortu nate to have that opportunity and I thought it would be fine. So didn't have a -- I didn't go for a visa because there was no need because it wasn't a communicable diseas e listed on their entry criteria but, because of my previous visas on their system, they pulled me to o ne side. Heather and the kids were left in luggage re claim or Customs or somewhere and I was taken round into a room and held there for half-an-hour while they t ried to see whether I was eligible to come in or not. It wasn't until I told them to Google entry 0 requirements into the United States that they belie ved what I was saying, so that was fun.

624

6

QUESTION: You have talked also in your statement about some of the practical consequences of the infections that you h ave, cost of travel insurance prohibitively high? ANSWER: Yes. I mean, I think it's -- I can understand wh y it is so high but I didn't ask to be in this situation an d it just seems so -- it just seems so wrong that if you have got multiple illnesses that aren't your -- you have n't asked for them, that you're actually then being penalised, you know. So essentially travel insuran ce, the quotes are family of four can go on holiday but it's actually a family of five, let's say, because your insurance will actually be at least equivalent to another individual adult going on holiday. That's my experience.

625

6

QUESTION: And difficulties in obtaining any form of life in surance as well? ANSWER: Well, that's completely out of the question, so . ..

626

6

QUESTION: The treatment that you described that you and Hea ther had in order to be able to start your family -- ANSWER: Yes.

627

6

QUESTION: -- you paid for that privately? ANSWER: We did, yes. There was no -- there was no opport unity within the Macfarlane Trust to -- it wasn't part of 1 their criteria to actually fund those things and th ere was no other kind of NHS because even though it was through the NHS and the Chelsea & Westminster Hospi tal, it was still viewed as partially private I think so you had to pay.

628

6

QUESTION: Dental care has been problematic as well? ANSWER: It has, yes. So earlier I have also experienced turning up for dental treatment and being confronted by wha t can only be described as someone that looks like they'v e just come from Mars. So they all suited and booted , masks like this and then you go into the room and everything's covered in plastic and then they kind of talk to you in this -- through their mask and say, "You okay", yeah, yeah, and they'll do the treatment and then that was it. Then more latterly, because of the variant CJD, I was not able to get dental care from the first de ntist I went to and then had to kind of go to the health authority to actually find someone within the area to actually provide dental care.

629

6

QUESTION: Can I then ask you, you mentioned the Macfarlane Trust -- ANSWER: Yes.

630

6

QUESTION: -- and you've said in your statement that you've had certain payments from the Macfarlane Trust, from th e 2 Skipton Fund? ANSWER: Yes.

631

6

QUESTION: But you have talked about the time-consuming natu re of the applications, seeing why others can struggle an d having to jump through hoops and I wondered if you could elaborate upon that. ANSWER: Yes. So it's great that these grants are made available, let me just say that, and what's not so great is the fact that the forms and the justification of some of the applicants that you make are just really convoluted and so you might have to get three quote s for something before you submit it, you might have to g et various letters from medical practitioners to demonstrate you are who you say you are or you have what you say you have and then when you submit the claim , then you might actually find that they will actuall y ask you for some more information. So it's -- what strikes me is that there tends to be a lack of transparency around the criteria and I don't know why that is but, you know, that's what it strikes me as and also like the level of fortitude that you need to get through the process is -- it wouldn 't surprise me if people just gave up, to be honest.

632

6

QUESTION: In relation to the current scheme, the EIBSS fund ing -- ANSWER: Yes. 3

633

6

QUESTION: -- what's been your experience in relation to tha t? ANSWER: I think in the previous incarnations of the trust , the Macfarlane Trust and the Skipton Fund, because they had been there for such a long time or relatively long time, I did sense that there were people there who had understood the community a bit more and had a relationship. With the new body, that isn't there. I guess that would make sense, given that they are all relativel y new to the job and they're new to the community. So th ere's not that level of interaction certainly -- well, ma ybe others have had more interaction but I certainly haven't.

634

6

QUESTION: You have expressed a concern in your statement ab out the impact of it being means tested. ANSWER: Yes. So I don't have a problem with people being means tested, I just think that sometimes people who are able to save will save because they want to save for the ir dependants. If you get to a point where you've sav ed too much, then that will then exclude you from some thing that you need because on the basis of that then you would need to use your savings because you have sav ings but you've got your savings because that's , you kno w, in my head anyway, I kind of earmarked that for when I 'm not here. 4 I can understand I think that definitely, you know, if funding is available then it should go to the most needy for sure, you know. I don't have an iss ue with that, I just think means testing is very -- is again another huge hurdle to jump in terms of like you create your own budget for a week or for a month or whatever and demonstrate that you have no residual income at the end of it. Okay, where do I start? So ...

635

6

QUESTION: Perry, those were my questions for you but do you have anything else you want to say, anything that's not been covered? ANSWER: I did make a note. I'll just see if you've cover ed it. Just to say that I really welcome this Inquiry and I wouldn't want to be in your or your shoes particu larly because I think you have a mammoth task. I would l ove and my own desire would be that there is transparen cy around what's happened in the past so that people i n the future can learn and so that some people will be ab le to get some closure. You can't -- you know, I think i t's impossible to reach closure for those that you've l ost when they shouldn't have been lost, so I think that was the only thing wanted to say.

636

7

QUESTION: And you were treated at the Birmingham Children's Hospital, initially with cryoprecipitate. ANSWER: Yes.

637

7

QUESTION: Your statement explains that from about late 1974 onwards you received cryoprecipitate at home. ANSWER: Yes.

638

7

QUESTION: You were about ten years old at the time. Was that partly for reasons of geographical distance from th e hospital? ANSWER: Yes. We lived about 25/30 miles away. So we were deemed -- yes, we could go on home treatment. So m y parents invested in a large deep freeze, because cr yo was quite a large commodity in those days, and, yes , we went from there, so ...

639

7

QUESTION: What was the effect of your haemophilia and your ne ed for treatment on your education as you were growing up? ANSWER: Same old story, really, with severe haemophiliacs. I did miss quite a bit of schooling, both, you know , secondary and junior. I didn't do too badly, but y es, I missed more than I should have done.

640

7

QUESTION: You record in your witness statement being told whe n you were relatively young -- and this is before you were informed of your infection through blood products -- that you wouldn't live past 35. ANSWER: No, that's right. That was quite a common thing on the ward at the Children's Hospital. When we used to miss -- if you were in there for more than two or three days, then they would try to give you basic schooling. Some of them were just -- the one nurse just said, "Well, you know, you may as well just ha ve a bit of a play, because you are not expected to li ve over 30, 35 years". So, you know, looking back on it, I don't know how I accepted that, but yes.

641

7

QUESTION: You said in your statement at some stage it made yo u resolve that you would live to at least 36. ANSWER: Well, yes, yes.

642

7

QUESTION: But you also say you were made to feel like a burde n to the NHS. ANSWER: Yes, very much so, because you didn't seem to fit i nto one category or another. It was odd, because you could sometimes walk about, so you weren't a disabl ed person, but you weren't -- you fell between two stools, if you like. Even though haemophilia is a disability, you were treated in a very strange wa y at the Children's Hospital, very strange.

643

7

QUESTION: Now, you were first offered Factor VIII products in 1977. You would have been early teens at that poin t. ANSWER: Yes.

644

7

QUESTION: You said in your statement you think it was by Dr Gilian Man but it could have been Dr Frank Hill. ANSWER: Yes, it was one of the two.

645

7

QUESTION: That was Factor VIII products by way of home treatment. ANSWER: Yes.

646

7

QUESTION: Can you recall what your parents or you were told about any risks? ANSWER: We weren't told of any risks and I have confirmed t hat with my parents. All we were told was that this wa s a groundbreaking medical development.

647

7

QUESTION: You said in your statement the impression was you w ere told that Factor VIII was "the miracle cure that wo uld solve all of our problems". ANSWER: Yes.

648

7

QUESTION: Your parents weren't told of risks of infection and you or they weren't warned to look out for any adve rse reactions to treatment. ANSWER: No, nothing at all.

649

7

QUESTION: You have also I think a recollection of being told by Dr Hill that the products were sourced from the United States. ANSWER: Yes, I do, yes.

650

7

QUESTION: We can see a list of the products that you received . Henry, can we have 1387002, please? We can see here particulars of blood products, batch numbers by mon th and year, and we won't obviously go through the det ail of all the batch numbers, but we can see here the v ast majority of the products that you received, with ve ry few exceptions, were Armour Factor VIII? ANSWER: Yes, that is correct.

651

7

QUESTION: If we just look at the next page as well, please, Henry, we can see that continuing through 1981, through the 1980s. In 1981 you fell ill after you had injected yourself with Factor VIII. What can you remember about that? ANSWER: Not a great deal, really. This isn't the glandular fever incident?

652

7

QUESTION: No. You said in your statement you subsequently learned that you were infected with hepatitis B at this time. ANSWER: Yes. I don't actually remember a lot about that, t o be honest, other than I was ill and that was it.

653

7

QUESTION: There are in your records, and you have recorded th is in your statement, positive tests for hepatitis B surface and core antibodies, May 1981. ANSWER: It turned out to be, yes.

654

7

QUESTION: Do you know whether you or your parents were told a t the time you were being tested for hepatitis B? ANSWER: No. I have asked them this question and no.

655

7

QUESTION: Were you told or your parents told that you had, in fact, tested positive for hepatitis B? ANSWER: No.

656

7

QUESTION: So in about early 1984 you fell ill with glandular fever. ANSWER: Yes.

657

7

QUESTION: Can we just have up on screen, please, Henry 138701 0 . We can see it's a letter from Dr Hill dated 20th January 1984 to you: "I am sorry to hear that you have glandular fever and hope that you are beginning to improve. I pres ume this is why you could not come to my clinic today." He offers further clinic dates. What do you recall about that episode of glandular fever? ANSWER: It was quite worrying, because I was planning to ge t married in the not too distant future. It was a horrendous illness. Although I have got severe haemophilia, I am not ill usually and I was bedridd en with this. I do remember that our local village doctor came out, our family doctor came out to see us, and he s aid to me, "I am diagnosing you with glandular fever, b ut I think you should see a specialist in haemophilia" . I genuinely believe he knew more than he was lettin g on, or wanted to let on professionally.

658

7

QUESTION: The way you have put it in your statement is that t he GP said that this fever would have been triggered b y something -- ANSWER: Uh-huh.

659

7

QUESTION: -- and that there were some things that were above his knowledge, or words to that effect. ANSWER: That's correct, yes.

660

7

QUESTION: With the benefit of hindsight -- ANSWER: Yes.

661

7

QUESTION: -- you now think that's around the time that you we re seroconverting. ANSWER: Yes, yes, because that just ties in with everything that we found out. The amount of people who have h ad glandular fever when they were seroconverting is almost 100%, so ...

662

7

QUESTION: I think you didn't, in fact, go and see the Haemophilia Centre. ANSWER: I didn't, no. Certainly not Frank Hill, but there you go.

663

7

QUESTION: In 1984, you married. ANSWER: Yes.

664

7

QUESTION: And your former wife will be giving evidence after you -- ANSWER: Yes.

665

7

QUESTION: -- this morning. Up to this point, apart from the illnesses you have described and apart from the obvious effects of the haemophilia that you have described, you were leading a busy, normal life? ANSWER: Yes, yes.

666

7

QUESTION: Working, good social life. ANSWER: Yes, very good.

667

7

QUESTION: Looking forward to marriage. ANSWER: Very good, yes. The haemophilia didn't really -- i t was just one of those things, you know. I just treated myself when I did and that was it, so ...

668

7

QUESTION: I think you and your partner had bought a house together. ANSWER: Yes, we did, yes.

669

7

QUESTION: At some point in the early part of 1985, you had a urinary infection and passed out. ANSWER: Yes.

670

7

QUESTION: Can you tell us what you remember about that and wh at happened immediately afterwards? ANSWER: Yes. We had only been married about a year, so [redacted] couldn't drive. My father picked me up. I was taken to A&E at the Queen Elizabeth Hospital, the Old Queen Elizabeth Hospital. I was on a troll ey and a junior doctor came to see me. He was stood there to my left, flicking through the notes, and h e just turned round and said, "This looks like HIV developing into full-blown AIDS", and that was it. I was -- well, I was already lying down, but I was floored, because I just -- I didn't even though wha t AIDS was anyway, really, and to be tested for it an d then to be told I was positive as such a casual thi ng, I didn't know what to do or what to say, so ...

671

7

QUESTION: As I understand it, you are not sure whether he use d the words HIV or not or HTLV-III. ANSWER: No, but I remember the word "AIDS" and "full-blown" . That's how ...

672

7

QUESTION: Now, there is no record of this in your medical records. ANSWER: Apparently not, no.

673

7

QUESTION: But I think it is right to say that the records you have got do not appear to be complete in any event. ANSWER: No, no, they are not.0

674

7

QUESTION: You don't, I think, have your GP records either. ANSWER: No. Mysteriously they vanished in 1985, 1984 or 19 85.

675

7

QUESTION: The only record that we have -- if we have up on screen, please, Henry, 1387013 -- prior to August 1 985 is the UKHCDO records. We will just look at that briefly. We can see there it says "Date first positive: 28th April 1985". That would be consistent -- ANSWER: Yes.

676

7

QUESTION: -- with your recollection of being given some information -- ANSWER: Yes.

677

7

QUESTION: -- in the way you have described in the first part of 1985. ANSWER: Yes.

678

7

QUESTION: But it is right, I should point out, if we go to th e next page, please, Henry, there is an obvious error on this page, because it says "Date condition diagnose d: 1st January 1999". You have no idea, I think, wher e that date comes from. ANSWER: No, no.

679

7

QUESTION: So the first reference in your actual medical recor ds to HTLV-III appears to be August of 1985, 1st August 1985. ANSWER: Yes. 1

680

7

QUESTION: We will just again look at a record in relation to that. 1387008, please. If we look down the very bottom of the page, we can see an entry for [redacted]. It says: "Married for 1 year. Wife pregnant." Then it says this: "HTLV-III status not known." Then there appears to be a further line under that, but this is the only form in which you have a copy of your records. ANSWER: Yes.

681

7

QUESTION: So we don't know what that further line might say. ANSWER: No, no.

682

7

QUESTION: As I understand your evidence, you and your wife di d go to see Dr Franklin on 1st August 1985. ANSWER: Yes.

683

7

QUESTION: You went to see him in part, at least, because your wife was pregnant. ANSWER: Yes.

684

7

QUESTION: And because you had this information -- ANSWER: Yes.

685

7

QUESTION: -- from the accident and emergency admission that y ou might have AIDS. ANSWER: Yes, yes.

686

7

QUESTION: And you wanted to talk about that with Dr Franklin.2 ANSWER: Yes.

687

7

QUESTION: Could we have up on screen, please -- it's a docume nt with a reference number for the next witness, Henry . So it is 1388002. So we can see the date is 1st August 1985, the date of that entry in your records, the date you we nt to see Dr Franklin. It is a letter from Dr Franklin -- we can just about see that at the bottom -- to Dr Jones, who was your wife's GP, not yours. ANSWER: Yes. He refused to have me.

688

7

QUESTION: It says this: "This 19-year-old girl who is the wife of a patient of mine who has severe haemophilia A came together with her husband to see me today. As you know, she is 3 to 4 months pregnant and would prefe r to terminate the pregnancy. Any child of this unio n would be a haemophilia carrier if female, but haemostatically normal if a male. There would therefore appear to be no grounds for a termination from the haemophilia point of view. "However, the current concern amongst the haemophiliacs regarding the acquired immune deficie ncy syndrome (AIDS) has been causing us to modify our advice to haemophiliac patients who wish to underta ke 7 doctors in the autumn of 1985 or indeed at any late r stage about whether you should tell other people or not about your infection? ANSWER: Yes. It was pretty much, "Don't tell anybody". He knew that we were a young married couple and -- yes , it was "Just don't tell anybody". Not that we were going to anyway, because we still didn't know what this was. So, yes.

689

7

QUESTION: [Redacted] is going to be giving evidence about thi s, but you were, as you describe in your statement, ve ry young, very frightened. ANSWER: Yes.

690

7

QUESTION: And bombarded with information about the risks of AIDS. ANSWER: Yes.

691

7

QUESTION: And that really continued for the following years. ANSWER: Oh, yes, yes.

692

7

QUESTION: You said in your statement that it was around this time that there was a change, a shift, in the atmosphere and workings of the Haemophilia Centre. ANSWER: Very much so. I didn't go -- after this diagnosis, I very rarely went to the haemophilia unit, but wha t was very, very noticeable is you used to go into th e waiting room and there were many, many, many chairs and it was full, always full. The clinic appointme nts 8 that I had afterwards, there was just one or two people or [redacted] and myself on our own, and tha t really struck out at us, you know, what's gone on? It was just so odd. Very, very odd. So ... But I basically stopped going to the clinic appointments. The arrogance of the doctors I was seeing, you couldn't ask them questions, really. T hey just told you what they wanted to tell you and that was it, so ...

693

7

QUESTION: It was some ten years later in 1995 that you found out that you had been infected also with hepatitis C. ANSWER: Apparently, yes.

694

7

QUESTION: Again, we will have a document up on screen. It is 1387006. It helps us date this. So it is 31st March 1995. It is from Dr Wilde, who by this time was your consultant, and it says this: "[You] attended the clinic this morning requesting hepatitis C serological testing, having been prompt ed to do so by a communication from the Haemophilia Society. The blood test was duly performed and he will be informed of his result." Now, the blood test was performed and you were informed of the result and it was positive. ANSWER: Yes.

695

7

QUESTION: But I think you don't believe this is a correct -- 9 ANSWER: No, I don't.

696

7

QUESTION: -- record of what triggered testing. ANSWER: No. I don't. Anybody in the room that knows me kn ows that I have little regard for the Haemophilia Socie ty. I would not have taken -- well, we would not have h ad any literature come through to us from the Haemophi lia Society, full stop. If by any chance we did, it wo uld have gone straight in the bin. So that does not ri ng true. Also, 1995, that's a very, very, very late date for hep C. I just think that is a letter of convenience, as far as I'm concerned. It ties everything up nicely for the records. So ...

697

7

QUESTION: And you don't know why you weren't called in for testing in relation to hepatitis C earlier than 199 5. ANSWER: No.

698

7

QUESTION: So precisely what triggered the test, it hadn't bee n done prior to this year? ANSWER: I don't know, but I hadn't sanctioned it, if it was .

699

7

QUESTION: And you have said in your statement that having received the hepatitis C diagnosis, at that time it was the bottom of your list of things for you to wo rry about. ANSWER: Very much so. I did get on with Dr Wilde, my haematologist. I went there for the -- I think it was 0 a clinic appoint. It wasn't just for the results, but he actually said, "I have the results of your hep C ". He said something like, "Do you really need to ask? " I just shrugged my shoulders and said, "No, not really". A bit further on in the consultation I sa id, "About this hep C". He said, "I wouldn't worry abo ut it. You have to prioritise things. Your haemophil ia is going to come above the hep C and HIV and AIDS i s top of your list". That was it. He really didn't speak much about it then.