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QUESTION: What have you asked them to do now? ANSWER: I've now had to actually ask them to send me 8 everything by email which most people would think i s an easy thing but because I have photosensitivity d ue to the autoimmune conditions which I believe have b een triggered by the hep c I can't go in front of co...
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QUESTION: All of those incidents have had a very significan t impact on your family, as have your infections? ANSWER: Yes.
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QUESTION: In your statement you've put it like this: "It's put pressure on all of us. It's caused stress in my relationship with my husband. It's pu t stress on my children. I have lost friends and the re are family members that I no longer see. We don't have a social life. We don't see anyone. I've hat ed ...
103
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QUESTION: I want to move on to talk a little bit more about the financial assistance. We've talked about the lette rs? ANSWER: Yes, that's fine.
104
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QUESTION: But just in terms of the processes, as soon as yo u were diagnosed with hepatitis C you registered with The Skipton Fund? ANSWER: Yes, because my hepatitis C nurse actually sugges ted it. She actually told me about it. Because she said -- she spoke to me, she said, "No, you got thi s through this. Th...
105
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QUESTION: You also applied for funding for a specialist bed because of the joint and muscle pain you suffer fro m. ANSWER: Yes.
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QUESTION: And that was turned down. ANSWER: It was, yes.2
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QUESTION: What your observations about that? ANSWER: I phoned them up and I explained the problems tha t I'd got and they said, "Yes, you can apply". The one b ig problem I have is the inconsistency of the informat ion you get from them because you'll speak to one perso n, they'll say one thing, and the next tim...
108
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QUESTION: You have just given up? ANSWER: I've given up asking for anything like that.
109
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QUESTION: Mrs D, those are the questions I have for you. B efore I ask Mr Lock whether there are points he wishes fo r me to raise is there anything else you would like t o say? ANSWER: No. I think I'd just, I'd actually just like to thank 4 all the support groups and people who have been the re for me becaus...
110
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QUESTION: I'm just going to turn my back. ANSWER: That's fine. (Pause)
111
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QUESTION: Just one point Mr Lock asks me to raise, and that is that we spoke a little bit earlier about the cognit ive behavioural therapy and the EMDR that you were havi ng and started. ANSWER: Yes.
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QUESTION: Why did that come to an end? ANSWER: Because I was going through the -- it was just -- I'd just started that when we started getting all the death threats, I'd had the letter, the stress, the house move, and they said that it was getting in th e way of my treatment, because obviously my anxiety a nd ...
113
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QUESTION: Michelle, you met your late husband Vincent in 1999 ? ANSWER: Yes.
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QUESTION: You have got a photo of him you'd like to have on screen while you're giving your evidence. Just to explain, we've just received the photograph and we' ve redacted the faces of your daughters because we don 't have explicit consent from them to show their faces for today because we've just got it, okay?...
115
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QUESTION: Thank you, Paul. Before you met Vincent was involved in a motorbike accident. What do you know about that? ANSWER: Not a lot, really. I just know he was in hospita l for about six months. He fractured -- well, broke his leg and he got given four units of blood.
116
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QUESTION: That accident was on 11 March 1983? ANSWER: Yes.
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QUESTION: He was put in traction, as you say. He was in hospital for about four or six months before return ing home. ANSWER: Yes.
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QUESTION: It was during that stay that he was infected with hepatitis C from a blood transfusion? ANSWER: Yes.
119
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QUESTION: Can you tell us what Vincent was like. ANSWER: Happy-go-lucky, adored his children, loved his ca r boot sales, a very family-orientated man, loved his Mum and Dad to death, hard working.
120
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QUESTION: You had three children together? ANSWER: Yes, three children.
121
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QUESTION: Until 2008 Vincent was well. ANSWER: Yes.
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QUESTION: As far as you were concerned, it was a normal famil y life together? ANSWER: Yes. Yes, we had our family holidays camping dow n in Cornwall, yes, weekend family things.
123
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QUESTION: Just ordinary day-to-day life together. ANSWER: Yes.
124
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QUESTION: What changed in 2008? ANSWER: He just started getting quite ill. His skin star ted getting quite thin. The slightest knock he used to start bleeding. He did start drinking. Then admit ted he was an alcoholic and went to the doctor's to get help from that, from which he did give up drinking, he gave...
125
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QUESTION: Let's take the in stages. 2008 to 2009 Vincent jus t wasn't well? ANSWER: No.
126
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QUESTION: You have said his skin kept bleeding with the slightest knock. ANSWER: Yes.
127
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QUESTION: He kept getting infections. ANSWER: Infections, yes.
128
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QUESTION: So he would go on to some antibiotics. ANSWER: Antibiotics, yes, backwards and forwards from the hospital, having endoscopies to see what was going on inside. His stomach kept bloating out. I can't remember what they call it now. He had to have tha t drained. Must have had that drained about four t...
129
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QUESTION: In 2009 Vincent was diagnosed with cirrhosis of the liver and was told it was probably caused by alcoho l? ANSWER: Yes.
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QUESTION: In your statement, you disputed that Vincent was a heavy drinker and Dr Li has responded to your statement and highlighted a number of medical recor ds from different doctors saying that Vincent was drinking heavily. ANSWER: Yes.
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QUESTION: You have reflected and you accept that Vincent was drinking heavily and, as you said, was an alcoholic but only from about 2006 and he'd stop drinking by Christmas 2008? ANSWER: Yes.
132
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QUESTION: Is that right? ANSWER: Yes, that's correct.
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QUESTION: So although he had been drinking it had only been f or a couple of years, it hadn't been for the decades t hat the doctors seemed to be suggesting. ANSWER: No. I mean, obviously prior weekend drinking, so rt of thing, as any young person does but not to the exte nt that he did build up to.
134
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QUESTION: Then Christmas 2008 you're clear that he stopped drinking. ANSWER: Yes.
135
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QUESTION: Vincent worked as a long distance lorry driver -- ANSWER: Yes.
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QUESTION: -- during this time and he was involved in an accid ent in August 2009. Can you tell us what happened. ANSWER: Well, he used to deliver operating tables, actual ly, to hospitals. He lost consciousness at the wheel a nd ended up going into the back of another car, got ta ken into the hospital. I had a...
137
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QUESTION: When he was in hospital in Manchester, at that poin t in time you were told that he had hepatitis C and t hat it was likely the cause of the cirrhosis of the liv er. ANSWER: Yes.
138
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QUESTION: That was the first time you were aware that Vincent had hepatitis C? ANSWER: Yes.
139
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QUESTION: In your statement you've said that you were upset t hat Dr Li hadn't told Vincent he had hepatitis C. ANSWER: Yes.
140
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QUESTION: Dr Li has responded to your witness statement and s aid there was an error in the hospital systems, so he never knew about the result of the hepatitis C test that he'd ordered. ANSWER: No, according to his statement, because at the ti me I didn't know that but I couldn't understand how co me Sandwell Ho...
141
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QUESTION: If we can have document 3175015, please, it's a let ter from Dr Li saying: "Please could you let me know if Mr Baker is hepatitis C positive. I've heard from two separate sources, i.e. his GP and a hospital in Birmingham called Sandwell Hospital, that he's positive. I ha ve yet to receive a report of...
142
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QUESTION: Despite asking for Vincent's medical records, until Dr Li provided this letter you weren't aware that t his is what had happened? ANSWER: No, no.
143
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QUESTION: Dr Li, we know from the documents he has provided t o us, then escalated the issue and raised an incident report about it with the hospital but you remain concerned that the hospital had failed to pass on t he result to Dr Li. ANSWER: Yes, if they knew in February, we didn't find out until April after th...
144
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QUESTION: Your concern is that if Vincent had been told that he had hepatitis C in February 2009 when the test resu lt came back, you are concerned that he could have had treatment and wouldn't have died. ANSWER: That is a good possibility. It's just what if. We'll never know.
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QUESTION: Dr Li has responded and said that Vincent was too unwell to receive the antiviral drugs, even when he was seen in February 2009 because he needed treatme nt of the ascites and the variceal haemorrhage at that point. Again, what is your response to that? ANSWER: But what if? You just don't know. Like ...
146
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QUESTION: After Vincent had received treatment for the varice s and the ascites, Vincent was referred to King's College London for assessment for a transplant. ANSWER: Yes.
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QUESTION: Could we have document 3175011, please. It's the second and third paragraphs of the letter. Thank y ou. He doesn't have any major contraindications for consideration of transplantation at that stage in August 2009, but if we look at paragraph 3 there we re some concerns about his heart condition and w...
148
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QUESTION: We can see at the end of that letter that there was a discussion about whether he would have the PEGyla ted interferon as well but it was subject to, again, further investigation of his heart condition. If we can then go to 1825002, please, and the fourth page which should be a letter dated 22 February...
149
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QUESTION: Unfortunately, Vincent became very unwell shortly afterwards. Do you remember what happened? 0 ANSWER: What, from King's College?
150
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QUESTION: Yes, from October 2009. He had a heart condition. ANSWER: Yes, I just know he got sent back to Worthing. H e was constantly at Worthing Hospital. He kept getting infections, getting confused, tried to escape from the hospital once and the police had to bring him back. He just sort of went downhill.
151
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QUESTION: He had two episodes of a very serious heart valve infection called infective endocarditis, didn't he? He had a really nasty infections. ANSWER: Yes.
152
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QUESTION: We can see if we go back to the letter we were just looking at, when he was seen at King's, here at the last paragraph of the letter, he's now a Child's B/ C cirrhotic and the fact he has had an intra-cerebral bleed in the last 24 hours an aortic valve replacem ent was felt to be a too high risk because of...
153
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QUESTION: So as you say he was transferred back to Worthing f or palliative care. ANSWER: Yes.
154
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QUESTION: That was your understanding at the time? ANSWER: Yes.
155
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QUESTION: From August 2009 Vincent was mostly in hospital because you weren't able to manage him at home. Can you tell us a little bit of how Vincent was physically and mentally in those last few months. ANSWER: Physically there was nothing of him. He'd just l ost so much weight. He was all skin and bone. Men...
156
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QUESTION: You have given some examples in your statement, one of them was when he'd ordered something from the inter net and missed the parcel delivery. Can you tell us ab out that. ANSWER: Yes, he ordered something. Yes, he was asleep wh en the delivery come, so he decided rather than wait f or the next day ...
157
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QUESTION: That was one of the few times he was home in that period? ANSWER: Yes.
158
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QUESTION: Then in the later stages of his illness he realised nothing could be done for him and he phoned you qui te regularly. ANSWER: Yes.
159
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QUESTION: What did he tell you? ANSWER: Can you read that.
160
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QUESTION: Of course. "He sometimes expressed the fact that there was nothing that could be done in strange ways such as phoning me and telling me he was having affairs in an effort to make me angry at him so I'd be less distressed when he passed away." Vincent died on 20 March 2010. Can you tell us a little bi...
161
1
QUESTION: They were just 9, 7 and 5 -- ANSWER: 5, yes.
162
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QUESTION: -- when he died. ANSWER: Yes, my older two not too bad, my younger one it' s affected her quite a bit. She was Daddy's girl, so rt of thing. Yeah, no, it's been a struggle with the girls.
163
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QUESTION: For you you've had to become a single Mum with your girls? ANSWER: Yes, my three girls.
164
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QUESTION: And you have other caring responsibilities you are shouldering on your own. ANSWER: Yes, at that point I took on my two brothers that were 21 years younger than me, they're twins. One of them's [redacted] so I'm his carer. Yeah, I was ju st looking after all five of them and trying to work a nd kee...
165
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QUESTION: You have said to me that the girls now are still in education. They're only in their teenage years. ANSWER: Yes.
166
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QUESTION: Two of them have been okay but the little one has h ad quite considerable mental health difficulties. ANSWER: Yes, yeah.
167
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QUESTION: Financially -- sorry, before we go there, while Vincent was ill, how much did your daughters know 4 about it? ANSWER: At first I think they just grew into it was an everyday thing but the more he deteriorated I didn' t want the girls seeing their Dad this way and losing his way and not being him, as I ...
168
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QUESTION: What do they remember of their Dad? ANSWER: Well, they got their photographs. They just reme mber Chessington, Pontlands Park, not quite so much Cornwall, not my younger one, but no, they just remember playing with him in the garden.
169
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QUESTION: But once he was ill you have said in your statement that they don't really remember him, apart from the fact that he was in and out of hospital. ANSWER: Yeah, they don't -- no, they can't recall how ser ious he was sort of thing. I didn't feel it was the rig ht place to keep taking the girls, even though...
170
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QUESTION: You have said that when the family knew about your husband having hepatitis C they Googled it and what did they say to you? ANSWER: Well, his uncle, he turned round and said to me, 5 "Don't use his toothbrush because you will get it", sort of thing. Yes, of course, touching the blood I used to touch hi...
171
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QUESTION: Your feeling about the family was they were trying to helpful but actually for you it was just too hard? ANSWER: No, it was the opposite. That's the worst thing you can actually do is Google. I've learnt that.
172
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QUESTION: Financially things have been difficult for you as well. You stopped a part-time job in November 2009 when Vincent also stopped work? ANSWER: That's when I started.
173
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QUESTION: Sorry, apologies, that's when you started. Can you tell us about that? ANSWER: Yes, because after Vincent's accident, he realise d that he couldn't actually go back to work because o f everything that was going on; so he actually resign ed from his job because he thought it was unfair on th em. So of co...
174
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QUESTION: You have received some payments through The Skipton Fund? ANSWER: Yes.
175
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QUESTION: What are your views of the financial assistance tha t you've been provided? ANSWER: It sounds a lot but it's not a lot, no, not when the girls were so young. I mean, he was on a very good salary, sort of thing, my youngest was five at the time, sort of thing, so she's 15 now. Yes, it's be en hard but...
176
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QUESTION: But financially it's been a struggle as the girls h ave grown up? ANSWER: Yes. Three girls, want, want, want.
177
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QUESTION: You feel that the financial assistance simply hasn' t been anywhere near enough. ANSWER: No.
178
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QUESTION: Compared to what Vincent would have earned if he -- ANSWER: Would have earned, he was on between £35,000 and £45,000 a year sort of thing and so what they paid out was a year and a half's salary, so ... we could hav e had a house by now, bought a house. I'm still in m y council house, no disrespect to t...
179
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QUESTION: Those are the questions I have for you. Is there anything else you would like to say? 7 ANSWER: No.
180
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QUESTION: I'm going to pick up where we left off yesterday looking at the psychological and emotional impacts on family members, spouses, partners, children, parents, etc. Some of the emotional responses that a partner or other family member may experience will be the same or very similar to those which would...
181
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QUESTION: In particular, some of the shared emotional responses may be fear, uncertainty. You've alluded to distress, so the distress of watching a loved one in pain, whether it's physical or mental pain. We've heard in particular from witnesses who had family members, often partners, receiving interferon tr...
182
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QUESTION: One of the additional burdens potentially for family members will be additional caring responsibilities, either directly for the person who is infected or having to take on additional caring responsibilities, for example for children, because their partner is not able to do that. What kind of toll ca...
183
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QUESTION: We talked yesterday about the process of adjustment for the person who is unwell, and the impact upon the concept of self-identity for the person who is unwell. But what you're describing is those same two processes or ideas impacting as well upon family members. ANSWER: Absolutely. Because when ...
184
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QUESTION: There are two pieces of literature I just want to refer you to there, materials you've referenced in the report, which provide confirmation of what you're saying. Henry, could we have EXPG0000022, please. It should come up on the screen in front of you. It's a paper called -- by Golics and others 20...
185
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QUESTION: And that's picked up in the second piece of literature I wanted to just ask you to look at, which is a World Health Organisation analysis of the impact of HIV on families. Henry, that's EXPG0000039, please. This is a 2005 paper by the World Health Organisation entitled "What is the impact of HIV on ...
186
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QUESTION: We'll come back, certainly, in more detail to the question of stigma and discrimination and disclosure. Just turning back to your report at page 4, and you've said this, towards the top of the page: "The dominant picture [this was the picture that you picked up from the materials you read] is one o...
187
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QUESTION: Thank you. I was just drawing your attention to how you'd summarised from your professional perspective, your understanding of what you'd read. ANSWER: Yeah, I think I wrote that statement and, you know, but I also think that just before that, I had identified the possibility that people could d...
188
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QUESTION: Yes, absolutely, we're going to come on to all of those. Can I ask, before we leave the topic or the theme of psychological impact, I wanted to ask Professor Christie about some of the particular issues that may arise in relation to children and adolescents because we know significant numbers of chi...
189
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QUESTION: Some of those from whom we heard very eloquent and powerful testimony who had been diagnosed with HIV as either children or adolescents, had grown up with it effectively all their life. And one of the points they made was they had never known anything different. ANSWER: Yeah.
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QUESTION: So in terms of self-identity, their self-identity was to a very considerable extent almost entirely shaped by the illness. ANSWER: Yes, and if you think about that, then -- your initial identity, your initial identity as a core human being is not one where illness is involved. And when illness t...
191
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QUESTION: As may also some of the practical consequences of the condition, in terms of ability to access or complete education. ANSWER: Oh, absolutely. So we've known -- right back 30 years ago, I remember going on a trip to Washington DC where they were just starting to look at their cognitive effects of ...
192
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QUESTION: You've alluded also in the report to particular difficulties for adolescents with treatment adherence. ANSWER: Mm.
193
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QUESTION: Can I ask you to just comment upon that? ANSWER: Yes, and again, this is something which is kind of part of being an adolescent, which is to defy authority, and to not quite believe what your doctors say. So when you go to your doctor as an adolescent and 30 your doctor says, "You need to take ...
194
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QUESTION: Can I ask you about the position for children. Growing up with a parent who is significantly incapacitated by HIV or hepatitis, and who may themselves have -- be carrying 31 a significant psychological burden of their own. You've referred in the report to a paper -- I won't put it on the screen --...
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QUESTION: We have certainly heard evidence which supports that. ANSWER: Yes, so again, if you think about this, the family unit, so a child depends very much on their parent as a source of emotional care, psychological care, physical care, and financial care, all of those aspects, and when a parent become...
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QUESTION: We've heard certainly some evidence of that ripple effect extending into a third generation -- 33 ANSWER: Yes.
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QUESTION: -- with grandchildren as well. ANSWER: Oh absolutely, yes, and it works all the way down depending on the age of grandparents but again, if you think about middle age, and a teenager, for example, whose grandparents themselves are ill, they may be looking out for their grandparents because their p...
198
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QUESTION: I wanted to explore some of the social impacts and I appreciate there's no bright line between psychological and social, hence psychosocial, but you've identified in the 34 report, first of all, a range of negative impacts upon an individual's working life, and you've identified that can arise in a ...
199
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QUESTION: We heard from some witnesses who talked also about how not being able to work or not being able to work in the way or in the job that they would have liked impacted upon their self-esteem, their sense of being of the person who ought to be the provider, and the breadwinner for the family. ANSWER: ...