pnadel/npi_all_transcripts · Datasets at Hugging Face

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1,500	15	QUESTION: Is there anything further that you want to say? ANSWER: I think, you know, it's great the Inquiry -- year s too late, we all know that, we will not go back over th at. We have to stop this from happening again. It can' t happen. So for me it is very much we have to learn . We have to get to the bottom of this. Doctors have been put in positions, probably I believe probably unfair positions, where they have had to tell us "W e have only got contaminated blood or dirty blood for you". They should never have been put in that position. Personally, I would like to peel the lay ers of the onion and see how far back this goes. Who w as it decided we shouldn't be self-sufficient in blood s? Who pulled the funding from that? We can't let thi s happen again. The other thing that really rocks me is people are still dying, you know, 30 years after being infecte d. Is it one in every four days someone is dying from hepatitis C. It could be me. It could be anybody in this room. But why, in this day and age, is that 7 happening? It shouldn't happen. We have to -- we have to use this Inquiry. We have to get to the bottom of it and we have to stop it from happening and continuing. You know, a special word out to a lot of widows out there. You know, they have been left on their own. My wife, you know, she signed up -- wel l, she didn't know what she was signing up for. They didn't know what they were signing up for. They ha ve been left on their own. They have been left with n o support and no help. I have a sister-in-law sittin g in London. You know, she is on her own now. She married my brother with plans to have a lifetime partnership and probably grow old together, and tha t changed inside two weeks. You know, those widows, it's very, very difficult. I feel lucky because I am reading my notes. I go to these meetings and there is widows, there is siblings and there's children who never knew what w ent on, and they're reading their dead family's notes. So I feel lucky. I keep saying "lucky". Other people laugh at me when I say it, but I do feel lucky I am reading my notes. Others aren't. So we have to st op it.
1,501	15	QUESTION: Paul, thank you. I am just going to ask Mr Snowden , who, as you know, represents you, if there is' 8 anything else. Paul, there is just one matter that Mr Snowden asks that I raise with you. You have told us about the discussion you had with Dr Mayne at some point in around 1987 about differe nt types of blood products, safe ones and ones that mi ght have been contaminated and how they were going to b e used. Was there any further discussion with you at that point by Dr Mayne or anybody else about any ri sks involved? ANSWER: No. It is funny, I discussed this with my wife t his morning. I don't think we had a say in the matter. We were being told: "You are getting this. This is what you are getting". You have to -- it wasn't in that form of discussion, "like it or lump it", but there was no options given. We were just going to get that. I think the doctors were coming from a point of view that you needed the Factor VIII more than you needed the risk of another virus. That's debatable . But that's the position I think they're coming from . So no, there was no further risks, because again, b ack to what Dr Mayne had told me, you know: "You have probably had this your whole life. It hasn't affec ted you. You will be okay". I think -- I believe she was being honest and 9 genuine about that at the time. That's what she believed and transmitted that to us. That's what stuck in our heads. So again, in 1987, the risks didn't seem prominent at that stage. It is only probably in the '90s that we really realised, "This is going to kill you unless you do something about it" .
1,502	16	QUESTION: You're here to give evidence with the support of your husband about your son, S? ANSWER: Yes.
1,503	16	QUESTION: You're going to use his name in your evidence bec ause it would be very hard for you to talk about him without naming him but the effect of the restrictio n order is that nobody can publish or disclose or pas s on or report that name. ANSWER: Yes.
1,504	16	QUESTION: This I know is the first time you have spoken out side of your immediate family about what's happened? ANSWER: Yes.
1,505	16	QUESTION: If you need a break at any time please don't hesi tate to tell us. ANSWER: Thank you.
1,506	16	QUESTION: So S was born in 1978? ANSWER: Yes.
1,507	16	QUESTION: He was diagnosed almost immediately I understand with haemophilia A? ANSWER: He was, yes.
1,508	16	QUESTION: His haemophilia was classed as severe? ANSWER: It was, yes.
1,509	16	QUESTION: One of your older children had also very recently at that point been diagnosed haemophilia whilst you we re pregnant with S? ANSWER: Yes, we found out when I was six months' pregnant with S.
1,510	16	QUESTION: But that was only after a prolonged period of tim e, a distressing period of time, in which your other s on had bruising and swelling and you were being accuse d or suspected of having injured him? ANSWER: I was, yes.
1,511	16	QUESTION: But after some 11 months or so, your eldest son w as diagnosed with severe haemophilia? ANSWER: Yes.
1,512	16	QUESTION: And so S's diagnosis was picked up at birth? ANSWER: Straight away, yes.
1,513	16	QUESTION: I think when he was little, you were very conscio us of his condition? ANSWER: Yes.
1,514	16	QUESTION: You used to wrap him in cotton wool? ANSWER: I was always frightened for anything to happen be cause of my other son, I'd seen what had happened. So he didn't learn to walk until he was two and that was when he was in the hospital having treatment and th e physiotherapist got him walking, but that was purel y because I didn't really let him go about very much because I was frightened. In them days they used t o say they padded a play pen for him and my other son and that's like all cotton wool so they couldn't ge t hurt. So I think I restricted him from walking, actually.
1,515	16	QUESTION: But he did learn to walk. ANSWER: He did.
1,516	16	QUESTION: You've described him as a very easy child, a love ly chubby boy? ANSWER: He was, yes.
1,517	16	QUESTION: Did he as a baby need any treatment for his haemophilia? ANSWER: Not for the first, I would say he had his first treatment when he was about 18 months.
1,518	16	QUESTION: That was when you were on a trip somewhere to vis it a relative? ANSWER: Yes, we was on the trip to go and see my sister a nd he was sitting on my knee and it was an all-night coac h journey but by the time we got off the coach he did n't want to move his arm. It wasn't swollen or anythin g but you could see he just didn't want you to touch it or anything. So we had to -- I took him to the hospital in Burnley and they then, I don't think th ey knew much about haemophilia, but they contacted the hospital in Charing Cross where we used to attend a nd they told them what to do and to give him his Factor VIII.
1,519	16	QUESTION: Was it cryoprecipitate he was given at that stage ? ANSWER: At that stage, yes, it was.
1,520	16	QUESTION: After that he ended up having to go to the hospit al fairly regularly to receive, at that stage, cryoprecipitate? ANSWER: That's right yes.
1,521	16	QUESTION: And he didn't like it did he? ANSWER: No, he didn't.
1,522	16	QUESTION: You'd have to wrap him up and hold him down, the family. ANSWER: Yes, and it used to take quite a long while for i t to go in as well, so it was quite difficult with him.
1,523	16	QUESTION: So the point in time came, I think you recalled i n your statement, around 1983 when his treatment chan ged from cryoprecipitate to what you were told were Factor VIII products. ANSWER: Factor VIII, yes.
1,524	16	QUESTION: Who would administer the Factor VIII to him? ANSWER: At first before I learnt how to do it, we used to go to the hospital and they would do it, but then I practised with one of the doctors used to let me practice on him. First, it was with an orange and then it was him until I learnt, and we were told it was a brilliant thing because we could take the treatment home and keep it in the fridge, so becaus e the boys used to have quite a lot of bleeds, they u sed to say that we could give them the Factor VIII immediately so it didn't get as bad, so that's what we did.
1,525	16	QUESTION: So you welcomed it as something that would make l ife easier in terms of your ability to treat your boys? ANSWER: Exactly.
1,526	16	QUESTION: Were you given any warnings about the Factor VIII products? ANSWER: No, I was just told it was an amazing thing and, in my head, it did seem that way because when we used to go to the hospital and it was cryo, you would go and you'd wait to see the doctor, then the doctor would bring the stuff down, then you had to wait again an d the cryo used to take quite a long time to go in as well, so this was a lot better.
1,527	16	QUESTION: Was there ever any discussion with you about the particular Factor VIII products that were being use d or any differences between different kinds of Factor VIII products? ANSWER: No.
1,528	16	QUESTION: A year or two, I think, after he'd started on the Factor VIIIs he developed a problem with a milk too th. Can you recall what happened? ANSWER: It got very wobbly and it was bleeding but his gu m swelled round it so it wouldn't fall out. So I pho ned up the hospital. We used to have to go to the haematology unit because they never had a haemophil ia clinic there and she told me to come up and what sh e would do is see if the dentist could take it out. We got to the hospital and they called the dentist dow n. When she did come down, she come in a space-suit an d it's like she didn't want to touch the ... She said that it would fall out eventually. So I said to her it wouldn't because this had been goi ng on for a couple of weeks. I said his gums is too - - I was trying to show it to her but she didn't want to come close and she certainly didn't want to put her hands by his mouth, so then the doctor said to her that they needed to take it out. It wouldn't take -- because it was so loose so that she took him away, and I said to the doctor what is going on because I did n't understand and she took me in a room. That is when she give me blue plastic bottle and a box of gloves and she told me that the boys had been tested for H IV. I didn't know what she was talking about and she sa id that they'd tested positive and in future when I gi ve them their Factor VIII I had to wear gloves and use the blue plastic bottle to put them in. I said to her, because I'd seen how the dentist was reacting, "but what about my other children", a nd she just said to me she didn't know and then sent m e home and that's how it was.
1,529	16	QUESTION: So you'd gone for what you thought was routine de ntal treatment essentially to deal with the swelling tha t had arisen around S's tooth? ANSWER: Yes.
1,530	16	QUESTION: The dentist had come and you understood that ther e was something strange, something odd going on because o f the way the dentist was clothed, you described it a s a space suit, the dentist had a mask on, and the dentist was you thought very obviously reluctant ev en to touch S. ANSWER: Yes.
1,531	16	QUESTION: That's how you were told by the doctor who was th ere that your two boys, including S, were HIV positive. ANSWER: Yes.
1,532	16	QUESTION: You've described being given the blue plastic bot tle and plastic gloves. ANSWER: Yes.
1,533	16	QUESTION: You were told that that was how you should admini ster Factor VIII in future to the boys? ANSWER: Yes.
1,534	16	QUESTION: Did the doctor tell you what HIV was? ANSWER: No.
1,535	16	QUESTION: Did the doctor tell you anything about the connec tion between HIV and AIDS? ANSWER: No, she didn't but then later on in them days the re was a lot coming on on the news but then they were saying it was drug takers, gay people that were getting it, and it was horrible actually at that ti me. It was really horrible. But to be honest, I don't know, I think I shut it out of my mind. I just didn't -- these two little boys, I just didn't acce pt what they were saying.
1,536	16	QUESTION: S was at the time we're describing seven years ol d? ANSWER: He was six going on seven.
1,537	16	QUESTION: And you weren't I think given any information abo ut what the longer term prognosis would be for either of them? ANSWER: No.
1,538	16	QUESTION: You were particularly concerned for a whole range of reasons but you had a baby at home. ANSWER: Yes.
1,539	16	QUESTION: And you asked about the risks of infection and wh at you should do in relation to any of your other children and the only answer you got was that -- ANSWER: That she didn't know.
1,540	16	QUESTION: Did you know that your boys were going to be test ed for HIV? ANSWER: No.
1,541	16	QUESTION: Did you ever receive anything in writing about th e diagnosis of HIV from the hospital after that? 0 ANSWER: No.
1,542	16	QUESTION: So it was a bottle, gloves and "I don't know". ANSWER: Yes, and then later, I think about a week later, my GP turned up at my door. He had a lady with him. I think she must have been something to do with education because it was about, they would come and they said to me they had to go to the boys' school to let them know that they had been tested HIV and tha t was all I heard after that.
1,543	16	QUESTION: You didn't understand why the school needed to be informed but, in fact, the school treated the boys and you okay? ANSWER: They didn't treat us any different, no.
1,544	16	QUESTION: I think your immediate reaction on being told the news at the hospital in the way you've described, you we nt to see your sister in a state of shock and you call ed your husband? ANSWER: I did because I didn't know what to do, so I run to my sister -- she is the only one I actually told, to b e honest, and then we phoned my husband and he come home. My sister she was shocked but even she didn' t actually know what this meant.
1,545	16	QUESTION: What you said in your statement at that point is you just didn't understand what was meant by the diagno sis that you had been given. 1 ANSWER: No.
1,546	16	QUESTION: You've described how you became aware from stuff that was on TV or in the newspapers about AIDS but you didn't really associate that with what was happenin g to your children. ANSWER: No, I didn't.
1,547	16	QUESTION: Your children were children with haemophilia who had been treated by the National Health Service and you couldn't make the correlation. ANSWER: No.
1,548	16	QUESTION: I think you were told by your sister or a friend about an article in the newspaper? ANSWER: My sister phoned me up and she said that her neig hbour had bought a paper, the Daily Star, and that in it it was saying that there was three boys, two brothers have got AIDS in the hospital that my children atte nd to. I knew that there was only three haemophiliacs in that hospital. It might seem silly but it was true , there was only three boys there, my two and another little boy, so I knew they were talking about my so ns so I went to the hospital to ask them what was it about and the doctor said to me that she wasn't sur e who had leaked the news out but they were trying to find out, but it wasn't AIDS, it was HIV that my so ns had.2
1,549	16	QUESTION: I am going to ask to be put up on the screen in f ront of you a newspaper article from around that time, 2687006, please, Paul. Are you able to highlight t he top left-hand article. Thank you. So this is from a newspaper, The Gazette, we've also got the Daily Star article that you referred t o but they say the same thing. If we just look at th is briefly together, please, Mrs C. So it talks about three boys with a deadly virus in hospital. It says the children do not necessari ly have the killer disease AIDS but experts say that about 1 in 10 people found with the virus later develop the disease and that because of their low resistance to infections haemophiliacs stand a high er than average chance of catching the disease. Had you been told any of that by the hospital? ANSWER: No.
1,550	16	QUESTION: The higher chance of HIV turning to AIDS because of -- ANSWER: I've only just -- when they sent me this paper, I think it was last week, I only saw it then. So I wasn't aware of it, no.
1,551	16	QUESTION: The hospital hadn't told you that? ANSWER: No.
1,552	16	QUESTION: Then if we just read on down it says: "The parents of the children know of the risks 3 to their children." Had the risks ever been explained to you? ANSWER: No.
1,553	16	QUESTION: Then a spokesman for the Northwest Thames Regiona l Health Authority says: "They have been informed about the positive tests. They are being counselled by senior doctors and the three boys are being monitored very closely ." Were you counselled by senior doctors? ANSWER: No, I was not.
1,554	16	QUESTION: Do you recall whether the boys were being closely monitored at the hospital? ANSWER: Well, we used to go to -- we actually did go to t he hospital a lot because we used to go and have their treatment done there so we was at the hospital a lo t, but I don't know if they was being monitored closel y for this.
1,555	16	QUESTION: You can take that down, thanks, Paul. In 1986, the boys' care was transferred to St Thomas' Hospital? ANSWER: Yes.
1,556	16	QUESTION: The haemophilia care was under the care of Dr Sav idge there? ANSWER: Yes.
1,557	16	QUESTION: Then in terms of the HIV infection under the care of 4 Dr O'Doherty? ANSWER: Yes.
1,558	16	QUESTION: Around this time it was suggested to you by the hospital, I don't know if it was Charing Cross or St Thomas' hospital, that you should tell the boys -- ANSWER: Yes.
1,559	16	QUESTION: -- that they had HIV. ANSWER: Yes, they were very keen for us to tell them, but my two children was only seven and eight. I just didn 't think that I could tell them that, so we didn't. W e eventually told them when I think S was 12 or 13 -- sorry.
1,560	16	QUESTION: That's all right, no, no. You can say S's name. ANSWER: My other son was 14 and that's when we told them.
1,561	16	QUESTION: I think what you said in your statement is the hospital kept telling you from day 1 you should tel l them but you couldn't see, given their young age, w hy they should and, again, when they got to 11 or 12 t he hospital were saying you should tell them but again you thought that was too young? ANSWER: I did, yes.
1,562	16	QUESTION: Eventually you told them, and focusing for presen t purposes on S, he was 13 or 14 years old? ANSWER: He was about 13 and we told them; we told them bo th together, actually. 5
1,563	16	QUESTION: What can you recall about that discussion? ANSWER: We explained what was the matter with them. Firs t of all, they just went very quiet and then we explaine d that when they cut theirself they had to be careful and to keep it covered. Maybe I didn't speak about it too much because, to be honest with you, it was bad enough me knowing without telling them. At that point they seemed qu ite healthy and maybe in my head I thought this isn't really happening anyway, so we didn't go in any big detail about it. Later on, when I looked at S's diaries, he does make a thing that he knew there was something becau se I used to treat them different. When they went out , I'd make sure they had scarves and stuff on, wherea s with my other children I didn't used to; so, obviously, they were all aware but they never actua lly said anything about it.
1,564	16	QUESTION: You have described in your statement how they really -- they were quiet on receiving the news? ANSWER: Yes.
1,565	16	QUESTION: You weren't sure how much they understood? ANSWER: No.
1,566	16	QUESTION: Were you ever given any help or support or advice about how to tell them or how to support them? 6 ANSWER: No.
1,567	16	QUESTION: When S was about 11 years old, he was prescribed at St Thomas' Hospital treatment in relation to the HI V, AZT. ANSWER: Yes. Up until then, up until the day we went to the hospital, S was still fine, he was still quite chub by, he had energy, he used to play cricket, but we went up for one of our normal appointments. They took S to do his bloods because each time we went up there they had blood tests done, and the doctor took me to another room and he said there wa s a problem with S's white T cell count and there was something wrong with it. So he was going to start him on something they called AZT to help it, which they did.
1,568	16	QUESTION: Just pausing there, Mrs C, were you told anything about any side effects or risks or disadvantages to the AZT treatment? ANSWER: No, I was just told this will help his T cell cou nt.
1,569	16	QUESTION: What actually did happen in terms of S's physical condition after that? ANSWER: Not long after, I would say about a month to six weeks, you noticed there was a difference in S. He seemed to stop growing. He lost a lot of weight. He got thrush. Then he started getting ulcers in his 7 mouth. We used to go to Guy's Hospital there and t he dentist there used to try and -- his gums used to bleed. He was like a different person, to be hones t. The ulcers in his mouth got really bad and eventually they went down in his stomach and his bottom. In the end they started giving him steroid s. They said that would help the ulcers. S apparently had a TB, which we were told it wasn't the sort of TB we would get, it was a TB that people with HIV got. He -- everything, actually, that happened to S, it was always the same thing: it wasn't what we would get; it was what people with HIV got. But the ulcers were a big problem. They gave him steroids. It then started that he couldn't eat . Eventually somebody from Guy's said just give him a bit -- he was absolutely fantastic. He said he would find something to be able to put on S's mouth so that he could eat and he brought a thick paste that S could put on his mouth so he could manage to eat. By this time S was getting quite paranoid. He used to love his food and he was documenting everything down, when he could drink, he was so pro ud when he could drink or he could eat anything. They took a part of his tongue away for a biopsy to find out why but we didn't get any answers back for 8 that one. I think at that point it got too late. About two weeks before S died, he was watching something on the TV and it was a lady and her husba nd had been having AZT and she said that before he started having AZT he had been fine but once he started having AZT all these problems come. When I went up to the hospital, S gave me a letter and he said to me don't read it there, wai t until I go home. So I went home and read the lette r, and he was terrified. He said he'd seen this on th e news and he knew that he was having AZT. So I went back to the hospital and then asked to speak to the doctor. When he come, he -- well, wha t he said was in the beginning when they give S the A ZT it was working but it wasn't working now, so they'd stop him taking it. I went along with it because to be honest it gave S a little bit of relief because he was so frightened. In my head, I didn't believe it becaus e from when S started taking the AZT, that was when a ll his problems started. They stopped his AZT then bu t that was just two weeks before he died.
1,570	16	QUESTION: When you say you didn't believe it, you didn't be lieve that the AZT had been working and had now stopped. You didn't think it had ever been working? 9 ANSWER: I don't think it had. I don't know. I think it just hurried it along because previous to that he had be en fine.
1,571	16	QUESTION: You said in your statement that you feel that S w as used as a guinea pig by the hospital for AZT? ANSWER: I do.
1,572	16	QUESTION: Why is that? ANSWER: I think it was because it was -- S, it happened i n early days. I don't think actually they knew -- do n't get me wrong, I'm not blaming the doctor at all for that. Dr O'Doherty was brilliant. I don't think actually at that point they knew what to do. So I think that was just given to S. I later found out that AZT actually isn't very good on its own. It needs to go with a combination of things. S wasn't given that. He was just given AZ T.
1,573	16	QUESTION: Your other son wasn't given AZT at all? ANSWER: No.
1,574	16	QUESTION: And didn't develop any of these problems? ANSWER: No.
1,575	16	QUESTION: So in January of 1994, S's condition worsened? ANSWER: It did.
1,576	16	QUESTION: He became very ill indeed. You described his paranoia. His weight went down to about 5 stone? ANSWER: It was, yes.0
1,577	16	QUESTION: As well as the ulcers he started getting bad ches t, coughing and stomach pains? ANSWER: He was. He was in a lot of pain. He was having a lot of morphine. At one point, because the morphine us ed to make him sleep, they tried to bring it down a bi t. He was so frightened of that because he used to arg ue with them because he was, I think the pain was too much. It was awful. He was just -- I don't know. The days when he could even just eat one thing made him so happy and that's all he used to wish for, that when -- he use d to love actually Kentucky chicken and chips and he used to say that when he was better he would go and -- that's the first thing he's going to have. He used to like cappuccinos. We used to take him down to the canteen but he couldn't ever drink them. They used to give him in the end some -- it was -- I think, it was called Ensure. They used to freeze it for him because then he could just hold i t in his mouth a bit, because his mouth was so sore. Even to the extent of -- he couldn't go to the toil et a lot and they'd give him an enema. My poor boy us ed to like having that done because it gave him some relief.
1,578	16	QUESTION: You found -- we will talk about his diaries in 1 a little while but one of the things he recorded in his diaries was that he would be happy on the days he could go to the toilet because it would stop the pa in and discomfort? ANSWER: Yes. He used to feel so bunged up, that was his words that he used to use.
1,579	16	QUESTION: Even once the AZT was stopped a few weeks before he died he was still being prescribed the steroids? ANSWER: Yes.
1,580	16	QUESTION: He had to take iron tablets because of his anaemi a? ANSWER: Yes.
1,581	16	QUESTION: And morphine for the pain, and you described how he was frightened of that being reduced because he did n't want the pain. ANSWER: No.
1,582	16	QUESTION: So he was taking, even without the AZT, 12 to 13 tablets daily at that point. ANSWER: Yes.
1,583	16	QUESTION: The ulcers had spread down from the mouth to his stomach -- ANSWER: Stomach, yes.
1,584	16	QUESTION: -- you were told and the doctors wanted to start radiation therapy on the ulcers? ANSWER: Yes.
1,585	16	QUESTION: S came home from the hospital for a weekend on 2 16 February? ANSWER: That's right, yes, and he had to go back on the 1 7th.
1,586	16	QUESTION: I think he was quite chatty? ANSWER: He was.
1,587	16	QUESTION: That visit home? ANSWER: That visit home he was very chatty. I've never h eard him chat so much.
1,588	16	QUESTION: He was talking about the new baby? ANSWER: Yes, and that when the baby got bigger and he's g ot his job he was going to get everything for him.
1,589	16	QUESTION: And then you took him back to hospital on 17 Febr uary for the radiation to begin? ANSWER: Yes. We left him in the evening time. He was fi ne. My baby was three weeks old at the time and we'd go ne up to bed, and then in the early hours of the morni ng we got a phone call and my husband answered it and the nurse said that S wanted us to go up there. So he just said to him, we'll be there at 9 o'clock in th e morning and she said, "Oh, okay", and he put the ph one down. Half-an-hour later the phone rung again. When my husband answered it she said I think you'd bette r come up now. So he went up to the hospital and I g ot a phone call. It was my husband. When he got ther e S had just died. 3 So I had to wake one of my elder sons up to look after the children and I got a minicab up to the hospital. When I got there, as I said, it just loo ked like S was sleeping with a sheet over him. I didn' t know what my husband saw at that time. And even th en, it's stupid --
1,590	16	QUESTION: It's not stupid. ANSWER: -- but I thought it was a mistake. I sat there w ith him and I was holding his hand and I thought in a minute he'll wake up and that's how he was. But then I felt the nurse kept coming in and then she s aid that she had to do the room ready for the day staff to start, but even in my head I'm thinking why is she saying that for? I didn't want to go but then my husband said to me we'd better go because they -- a nd when I come out, I saw Chris. She was one of the ladies that was with Dr O'Doherty and all I could s ay to her was why? She said to me she didn't know. A nd we went home. We were told that we could go to the haemophilia centre on the Monday and then I could go and see S in the chapel of rest. So we got up and we went there in the morning but when we went in the door, Dr Savidg e met us and his words to us was we didn't really nee d to keep coming up the hospital now. 4 To me, that was telling me S had gone. They didn't have to worry anymore. So I said that we co uld go and see S but we needed somebody to take us down to the chapel of rest because you can't just go down there yourself, so somebody took us down there and we went and saw S down there. They did say to me about the funeral parlour to go to, because they said there'd been a few familie s, that some funeral parlours won't let you view them, so sent me to somewhere where they'd said he's quite nice. In a way, we was lucky because when I got there, I didn't know but when we did get there, the man that run it was the headmaster from my children 's school from before so he knew us and he was -- he u sed to let us go up everyday to see S. Actually, I thi nk it was him that got us through that time.
1,591	16	QUESTION: At the point when S died he was 15 years old. ANSWER: He was 15, yes.
1,592	16	QUESTION: You provided the Inquiry with a copy of S's death certificate. Paul, it's 2687005. If we see in cause of death this doesn't mention anything about HIV or AIDS. ANSWER: No.
1,593	16	QUESTION: Was that at your request? 5 ANSWER: No, it wasn't. I did wonder why it wasn't but, n o, it wasn't.
1,594	16	QUESTION: That can go down, thanks. After S died you discovered he had been keeping a diary? ANSWER: Yes.
1,595	16	QUESTION: You've shared with us some of the front pages of the diary. ANSWER: Yes.
1,596	16	QUESTION: We're going to put that up. If you need it taken down, we will. 2687002, please, Paul. That's one of the diaries S kept. ANSWER: Yes.
1,597	16	QUESTION: He liked to put pictures on and you've said he wa s meticulous in the way in which he wrote and drew? ANSWER: Very, very.
1,598	16	QUESTION: Your statement talks about some of the things he put in his diary. Do you want to share any of them or would you like me to or we can just leave that? ANSWER: I'd like you to.
1,599	16	QUESTION: Okay. So you've told us in your witness statemen t some of the things that S put in his diary. He wro te about how he was feeling, his views about the treatment he was receiving, the pain he was in, his6 aspirations for the future, about how he'd look aft er your new baby when he was older and better and how the baby would want for nothing. You've described how the diaries were very neatly and carefully written. He was very tidy. He wrapped everything in tissue. H e recorded his thoughts and feelings about his illnes s. That's where he wrote he'd noticed how he was treated different because you were very protective of him. ANSWER: Yes.

1,500

15

QUESTION: Is there anything further that you want to say? ANSWER: I think, you know, it's great the Inquiry -- year s too late, we all know that, we will not go back over th at. We have to stop this from happening again. It can' t happen. So for me it is very much we have to learn . We have to get to the bottom of this. Doctors have been put in positions, probably I believe probably unfair positions, where they have had to tell us "W e have only got contaminated blood or dirty blood for you". They should never have been put in that position. Personally, I would like to peel the lay ers of the onion and see how far back this goes. Who w as it decided we shouldn't be self-sufficient in blood s? Who pulled the funding from that? We can't let thi s happen again. The other thing that really rocks me is people are still dying, you know, 30 years after being infecte d. Is it one in every four days someone is dying from hepatitis C. It could be me. It could be anybody in this room. But why, in this day and age, is that 7 happening? It shouldn't happen. We have to -- we have to use this Inquiry. We have to get to the bottom of it and we have to stop it from happening and continuing. You know, a special word out to a lot of widows out there. You know, they have been left on their own. My wife, you know, she signed up -- wel l, she didn't know what she was signing up for. They didn't know what they were signing up for. They ha ve been left on their own. They have been left with n o support and no help. I have a sister-in-law sittin g in London. You know, she is on her own now. She married my brother with plans to have a lifetime partnership and probably grow old together, and tha t changed inside two weeks. You know, those widows, it's very, very difficult. I feel lucky because I am reading my notes. I go to these meetings and there is widows, there is siblings and there's children who never knew what w ent on, and they're reading their dead family's notes. So I feel lucky. I keep saying "lucky". Other people laugh at me when I say it, but I do feel lucky I am reading my notes. Others aren't. So we have to st op it.

1,501

15

QUESTION: Paul, thank you. I am just going to ask Mr Snowden , who, as you know, represents you, if there is' 8 anything else. Paul, there is just one matter that Mr Snowden asks that I raise with you. You have told us about the discussion you had with Dr Mayne at some point in around 1987 about differe nt types of blood products, safe ones and ones that mi ght have been contaminated and how they were going to b e used. Was there any further discussion with you at that point by Dr Mayne or anybody else about any ri sks involved? ANSWER: No. It is funny, I discussed this with my wife t his morning. I don't think we had a say in the matter. We were being told: "You are getting this. This is what you are getting". You have to -- it wasn't in that form of discussion, "like it or lump it", but there was no options given. We were just going to get that. I think the doctors were coming from a point of view that you needed the Factor VIII more than you needed the risk of another virus. That's debatable . But that's the position I think they're coming from . So no, there was no further risks, because again, b ack to what Dr Mayne had told me, you know: "You have probably had this your whole life. It hasn't affec ted you. You will be okay". I think -- I believe she was being honest and 9 genuine about that at the time. That's what she believed and transmitted that to us. That's what stuck in our heads. So again, in 1987, the risks didn't seem prominent at that stage. It is only probably in the '90s that we really realised, "This is going to kill you unless you do something about it" .

1,502

16

QUESTION: You're here to give evidence with the support of your husband about your son, S? ANSWER: Yes.

1,503

16

QUESTION: You're going to use his name in your evidence bec ause it would be very hard for you to talk about him without naming him but the effect of the restrictio n order is that nobody can publish or disclose or pas s on or report that name. ANSWER: Yes.

1,504

16

QUESTION: This I know is the first time you have spoken out side of your immediate family about what's happened? ANSWER: Yes.

1,505

16

QUESTION: If you need a break at any time please don't hesi tate to tell us. ANSWER: Thank you.

1,506

16

QUESTION: So S was born in 1978? ANSWER: Yes.

1,507

16

QUESTION: He was diagnosed almost immediately I understand with haemophilia A? ANSWER: He was, yes.

1,508

16

QUESTION: His haemophilia was classed as severe? ANSWER: It was, yes.

1,509

16

QUESTION: One of your older children had also very recently at that point been diagnosed haemophilia whilst you we re pregnant with S? ANSWER: Yes, we found out when I was six months' pregnant with S.

1,510

16

QUESTION: But that was only after a prolonged period of tim e, a distressing period of time, in which your other s on had bruising and swelling and you were being accuse d or suspected of having injured him? ANSWER: I was, yes.

1,511

16

QUESTION: But after some 11 months or so, your eldest son w as diagnosed with severe haemophilia? ANSWER: Yes.

1,512

16

QUESTION: And so S's diagnosis was picked up at birth? ANSWER: Straight away, yes.

1,513

16

QUESTION: I think when he was little, you were very conscio us of his condition? ANSWER: Yes.

1,514

16

QUESTION: You used to wrap him in cotton wool? ANSWER: I was always frightened for anything to happen be cause of my other son, I'd seen what had happened. So he didn't learn to walk until he was two and that was when he was in the hospital having treatment and th e physiotherapist got him walking, but that was purel y because I didn't really let him go about very much because I was frightened. In them days they used t o say they padded a play pen for him and my other son and that's like all cotton wool so they couldn't ge t hurt. So I think I restricted him from walking, actually.

1,515

16

QUESTION: But he did learn to walk. ANSWER: He did.

1,516

16

QUESTION: You've described him as a very easy child, a love ly chubby boy? ANSWER: He was, yes.

1,517

16

QUESTION: Did he as a baby need any treatment for his haemophilia? ANSWER: Not for the first, I would say he had his first treatment when he was about 18 months.

1,518

16

QUESTION: That was when you were on a trip somewhere to vis it a relative? ANSWER: Yes, we was on the trip to go and see my sister a nd he was sitting on my knee and it was an all-night coac h journey but by the time we got off the coach he did n't want to move his arm. It wasn't swollen or anythin g but you could see he just didn't want you to touch it or anything. So we had to -- I took him to the hospital in Burnley and they then, I don't think th ey knew much about haemophilia, but they contacted the hospital in Charing Cross where we used to attend a nd they told them what to do and to give him his Factor VIII.

1,519

16

QUESTION: Was it cryoprecipitate he was given at that stage ? ANSWER: At that stage, yes, it was.

1,520

16

QUESTION: After that he ended up having to go to the hospit al fairly regularly to receive, at that stage, cryoprecipitate? ANSWER: That's right yes.

1,521

16

QUESTION: And he didn't like it did he? ANSWER: No, he didn't.

1,522

16

QUESTION: You'd have to wrap him up and hold him down, the family. ANSWER: Yes, and it used to take quite a long while for i t to go in as well, so it was quite difficult with him.

1,523

16

QUESTION: So the point in time came, I think you recalled i n your statement, around 1983 when his treatment chan ged from cryoprecipitate to what you were told were Factor VIII products. ANSWER: Factor VIII, yes.

1,524

16

QUESTION: Who would administer the Factor VIII to him? ANSWER: At first before I learnt how to do it, we used to go to the hospital and they would do it, but then I practised with one of the doctors used to let me practice on him. First, it was with an orange and then it was him until I learnt, and we were told it was a brilliant thing because we could take the treatment home and keep it in the fridge, so becaus e the boys used to have quite a lot of bleeds, they u sed to say that we could give them the Factor VIII immediately so it didn't get as bad, so that's what we did.

1,525

16

QUESTION: So you welcomed it as something that would make l ife easier in terms of your ability to treat your boys? ANSWER: Exactly.

1,526

16

QUESTION: Were you given any warnings about the Factor VIII products? ANSWER: No, I was just told it was an amazing thing and, in my head, it did seem that way because when we used to go to the hospital and it was cryo, you would go and you'd wait to see the doctor, then the doctor would bring the stuff down, then you had to wait again an d the cryo used to take quite a long time to go in as well, so this was a lot better.

1,527

16

QUESTION: Was there ever any discussion with you about the particular Factor VIII products that were being use d or any differences between different kinds of Factor VIII products? ANSWER: No.

1,528

16

QUESTION: A year or two, I think, after he'd started on the Factor VIIIs he developed a problem with a milk too th. Can you recall what happened? ANSWER: It got very wobbly and it was bleeding but his gu m swelled round it so it wouldn't fall out. So I pho ned up the hospital. We used to have to go to the haematology unit because they never had a haemophil ia clinic there and she told me to come up and what sh e would do is see if the dentist could take it out. We got to the hospital and they called the dentist dow n. When she did come down, she come in a space-suit an d it's like she didn't want to touch the ... She said that it would fall out eventually. So I said to her it wouldn't because this had been goi ng on for a couple of weeks. I said his gums is too - - I was trying to show it to her but she didn't want to come close and she certainly didn't want to put her hands by his mouth, so then the doctor said to her that they needed to take it out. It wouldn't take -- because it was so loose so that she took him away, and I said to the doctor what is going on because I did n't understand and she took me in a room. That is when she give me blue plastic bottle and a box of gloves and she told me that the boys had been tested for H IV. I didn't know what she was talking about and she sa id that they'd tested positive and in future when I gi ve them their Factor VIII I had to wear gloves and use the blue plastic bottle to put them in. I said to her, because I'd seen how the dentist was reacting, "but what about my other children", a nd she just said to me she didn't know and then sent m e home and that's how it was.

1,529

16

QUESTION: So you'd gone for what you thought was routine de ntal treatment essentially to deal with the swelling tha t had arisen around S's tooth? ANSWER: Yes.

1,530

16

QUESTION: The dentist had come and you understood that ther e was something strange, something odd going on because o f the way the dentist was clothed, you described it a s a space suit, the dentist had a mask on, and the dentist was you thought very obviously reluctant ev en to touch S. ANSWER: Yes.

1,531

16

QUESTION: That's how you were told by the doctor who was th ere that your two boys, including S, were HIV positive. ANSWER: Yes.

1,532

16

QUESTION: You've described being given the blue plastic bot tle and plastic gloves. ANSWER: Yes.

1,533

16

QUESTION: You were told that that was how you should admini ster Factor VIII in future to the boys? ANSWER: Yes.

1,534

16

QUESTION: Did the doctor tell you what HIV was? ANSWER: No.

1,535

16

QUESTION: Did the doctor tell you anything about the connec tion between HIV and AIDS? ANSWER: No, she didn't but then later on in them days the re was a lot coming on on the news but then they were saying it was drug takers, gay people that were getting it, and it was horrible actually at that ti me. It was really horrible. But to be honest, I don't know, I think I shut it out of my mind. I just didn't -- these two little boys, I just didn't acce pt what they were saying.

1,536

16

QUESTION: S was at the time we're describing seven years ol d? ANSWER: He was six going on seven.

1,537

16

QUESTION: And you weren't I think given any information abo ut what the longer term prognosis would be for either of them? ANSWER: No.

1,538

16

QUESTION: You were particularly concerned for a whole range of reasons but you had a baby at home. ANSWER: Yes.

1,539

16

QUESTION: And you asked about the risks of infection and wh at you should do in relation to any of your other children and the only answer you got was that -- ANSWER: That she didn't know.

1,540

16

QUESTION: Did you know that your boys were going to be test ed for HIV? ANSWER: No.

1,541

16

QUESTION: Did you ever receive anything in writing about th e diagnosis of HIV from the hospital after that? 0 ANSWER: No.

1,542

16

QUESTION: So it was a bottle, gloves and "I don't know". ANSWER: Yes, and then later, I think about a week later, my GP turned up at my door. He had a lady with him. I think she must have been something to do with education because it was about, they would come and they said to me they had to go to the boys' school to let them know that they had been tested HIV and tha t was all I heard after that.

1,543

16

QUESTION: You didn't understand why the school needed to be informed but, in fact, the school treated the boys and you okay? ANSWER: They didn't treat us any different, no.

1,544

16

QUESTION: I think your immediate reaction on being told the news at the hospital in the way you've described, you we nt to see your sister in a state of shock and you call ed your husband? ANSWER: I did because I didn't know what to do, so I run to my sister -- she is the only one I actually told, to b e honest, and then we phoned my husband and he come home. My sister she was shocked but even she didn' t actually know what this meant.

1,545

16

QUESTION: What you said in your statement at that point is you just didn't understand what was meant by the diagno sis that you had been given. 1 ANSWER: No.

1,546

16

QUESTION: You've described how you became aware from stuff that was on TV or in the newspapers about AIDS but you didn't really associate that with what was happenin g to your children. ANSWER: No, I didn't.

1,547

16

QUESTION: Your children were children with haemophilia who had been treated by the National Health Service and you couldn't make the correlation. ANSWER: No.

1,548

16

QUESTION: I think you were told by your sister or a friend about an article in the newspaper? ANSWER: My sister phoned me up and she said that her neig hbour had bought a paper, the Daily Star, and that in it it was saying that there was three boys, two brothers have got AIDS in the hospital that my children atte nd to. I knew that there was only three haemophiliacs in that hospital. It might seem silly but it was true , there was only three boys there, my two and another little boy, so I knew they were talking about my so ns so I went to the hospital to ask them what was it about and the doctor said to me that she wasn't sur e who had leaked the news out but they were trying to find out, but it wasn't AIDS, it was HIV that my so ns had.2

1,549

16

QUESTION: I am going to ask to be put up on the screen in f ront of you a newspaper article from around that time, 2687006, please, Paul. Are you able to highlight t he top left-hand article. Thank you. So this is from a newspaper, The Gazette, we've also got the Daily Star article that you referred t o but they say the same thing. If we just look at th is briefly together, please, Mrs C. So it talks about three boys with a deadly virus in hospital. It says the children do not necessari ly have the killer disease AIDS but experts say that about 1 in 10 people found with the virus later develop the disease and that because of their low resistance to infections haemophiliacs stand a high er than average chance of catching the disease. Had you been told any of that by the hospital? ANSWER: No.

1,550

16

QUESTION: The higher chance of HIV turning to AIDS because of -- ANSWER: I've only just -- when they sent me this paper, I think it was last week, I only saw it then. So I wasn't aware of it, no.

1,551

16

QUESTION: The hospital hadn't told you that? ANSWER: No.

1,552

16

QUESTION: Then if we just read on down it says: "The parents of the children know of the risks 3 to their children." Had the risks ever been explained to you? ANSWER: No.

1,553

16

QUESTION: Then a spokesman for the Northwest Thames Regiona l Health Authority says: "They have been informed about the positive tests. They are being counselled by senior doctors and the three boys are being monitored very closely ." Were you counselled by senior doctors? ANSWER: No, I was not.

1,554

16

QUESTION: Do you recall whether the boys were being closely monitored at the hospital? ANSWER: Well, we used to go to -- we actually did go to t he hospital a lot because we used to go and have their treatment done there so we was at the hospital a lo t, but I don't know if they was being monitored closel y for this.

1,555

16

QUESTION: You can take that down, thanks, Paul. In 1986, the boys' care was transferred to St Thomas' Hospital? ANSWER: Yes.

1,556

16

QUESTION: The haemophilia care was under the care of Dr Sav idge there? ANSWER: Yes.

1,557

16

QUESTION: Then in terms of the HIV infection under the care of 4 Dr O'Doherty? ANSWER: Yes.

1,558

16

QUESTION: Around this time it was suggested to you by the hospital, I don't know if it was Charing Cross or St Thomas' hospital, that you should tell the boys -- ANSWER: Yes.

1,559

16

QUESTION: -- that they had HIV. ANSWER: Yes, they were very keen for us to tell them, but my two children was only seven and eight. I just didn 't think that I could tell them that, so we didn't. W e eventually told them when I think S was 12 or 13 -- sorry.

1,560

16

QUESTION: That's all right, no, no. You can say S's name. ANSWER: My other son was 14 and that's when we told them.

1,561

16

QUESTION: I think what you said in your statement is the hospital kept telling you from day 1 you should tel l them but you couldn't see, given their young age, w hy they should and, again, when they got to 11 or 12 t he hospital were saying you should tell them but again you thought that was too young? ANSWER: I did, yes.

1,562

16

QUESTION: Eventually you told them, and focusing for presen t purposes on S, he was 13 or 14 years old? ANSWER: He was about 13 and we told them; we told them bo th together, actually. 5

1,563

16

QUESTION: What can you recall about that discussion? ANSWER: We explained what was the matter with them. Firs t of all, they just went very quiet and then we explaine d that when they cut theirself they had to be careful and to keep it covered. Maybe I didn't speak about it too much because, to be honest with you, it was bad enough me knowing without telling them. At that point they seemed qu ite healthy and maybe in my head I thought this isn't really happening anyway, so we didn't go in any big detail about it. Later on, when I looked at S's diaries, he does make a thing that he knew there was something becau se I used to treat them different. When they went out , I'd make sure they had scarves and stuff on, wherea s with my other children I didn't used to; so, obviously, they were all aware but they never actua lly said anything about it.

1,564

16

QUESTION: You have described in your statement how they really -- they were quiet on receiving the news? ANSWER: Yes.

1,565

16

QUESTION: You weren't sure how much they understood? ANSWER: No.

1,566

16

QUESTION: Were you ever given any help or support or advice about how to tell them or how to support them? 6 ANSWER: No.

1,567

16

QUESTION: When S was about 11 years old, he was prescribed at St Thomas' Hospital treatment in relation to the HI V, AZT. ANSWER: Yes. Up until then, up until the day we went to the hospital, S was still fine, he was still quite chub by, he had energy, he used to play cricket, but we went up for one of our normal appointments. They took S to do his bloods because each time we went up there they had blood tests done, and the doctor took me to another room and he said there wa s a problem with S's white T cell count and there was something wrong with it. So he was going to start him on something they called AZT to help it, which they did.

1,568

16

QUESTION: Just pausing there, Mrs C, were you told anything about any side effects or risks or disadvantages to the AZT treatment? ANSWER: No, I was just told this will help his T cell cou nt.

1,569

16

QUESTION: What actually did happen in terms of S's physical condition after that? ANSWER: Not long after, I would say about a month to six weeks, you noticed there was a difference in S. He seemed to stop growing. He lost a lot of weight. He got thrush. Then he started getting ulcers in his 7 mouth. We used to go to Guy's Hospital there and t he dentist there used to try and -- his gums used to bleed. He was like a different person, to be hones t. The ulcers in his mouth got really bad and eventually they went down in his stomach and his bottom. In the end they started giving him steroid s. They said that would help the ulcers. S apparently had a TB, which we were told it wasn't the sort of TB we would get, it was a TB that people with HIV got. He -- everything, actually, that happened to S, it was always the same thing: it wasn't what we would get; it was what people with HIV got. But the ulcers were a big problem. They gave him steroids. It then started that he couldn't eat . Eventually somebody from Guy's said just give him a bit -- he was absolutely fantastic. He said he would find something to be able to put on S's mouth so that he could eat and he brought a thick paste that S could put on his mouth so he could manage to eat. By this time S was getting quite paranoid. He used to love his food and he was documenting everything down, when he could drink, he was so pro ud when he could drink or he could eat anything. They took a part of his tongue away for a biopsy to find out why but we didn't get any answers back for 8 that one. I think at that point it got too late. About two weeks before S died, he was watching something on the TV and it was a lady and her husba nd had been having AZT and she said that before he started having AZT he had been fine but once he started having AZT all these problems come. When I went up to the hospital, S gave me a letter and he said to me don't read it there, wai t until I go home. So I went home and read the lette r, and he was terrified. He said he'd seen this on th e news and he knew that he was having AZT. So I went back to the hospital and then asked to speak to the doctor. When he come, he -- well, wha t he said was in the beginning when they give S the A ZT it was working but it wasn't working now, so they'd stop him taking it. I went along with it because to be honest it gave S a little bit of relief because he was so frightened. In my head, I didn't believe it becaus e from when S started taking the AZT, that was when a ll his problems started. They stopped his AZT then bu t that was just two weeks before he died.

1,570

16

QUESTION: When you say you didn't believe it, you didn't be lieve that the AZT had been working and had now stopped. You didn't think it had ever been working? 9 ANSWER: I don't think it had. I don't know. I think it just hurried it along because previous to that he had be en fine.

1,571

16

QUESTION: You said in your statement that you feel that S w as used as a guinea pig by the hospital for AZT? ANSWER: I do.

1,572

16

QUESTION: Why is that? ANSWER: I think it was because it was -- S, it happened i n early days. I don't think actually they knew -- do n't get me wrong, I'm not blaming the doctor at all for that. Dr O'Doherty was brilliant. I don't think actually at that point they knew what to do. So I think that was just given to S. I later found out that AZT actually isn't very good on its own. It needs to go with a combination of things. S wasn't given that. He was just given AZ T.

1,573

16

QUESTION: Your other son wasn't given AZT at all? ANSWER: No.

1,574

16

QUESTION: And didn't develop any of these problems? ANSWER: No.

1,575

16

QUESTION: So in January of 1994, S's condition worsened? ANSWER: It did.

1,576

16

QUESTION: He became very ill indeed. You described his paranoia. His weight went down to about 5 stone? ANSWER: It was, yes.0

1,577

16

QUESTION: As well as the ulcers he started getting bad ches t, coughing and stomach pains? ANSWER: He was. He was in a lot of pain. He was having a lot of morphine. At one point, because the morphine us ed to make him sleep, they tried to bring it down a bi t. He was so frightened of that because he used to arg ue with them because he was, I think the pain was too much. It was awful. He was just -- I don't know. The days when he could even just eat one thing made him so happy and that's all he used to wish for, that when -- he use d to love actually Kentucky chicken and chips and he used to say that when he was better he would go and -- that's the first thing he's going to have. He used to like cappuccinos. We used to take him down to the canteen but he couldn't ever drink them. They used to give him in the end some -- it was -- I think, it was called Ensure. They used to freeze it for him because then he could just hold i t in his mouth a bit, because his mouth was so sore. Even to the extent of -- he couldn't go to the toil et a lot and they'd give him an enema. My poor boy us ed to like having that done because it gave him some relief.

1,578

16

QUESTION: You found -- we will talk about his diaries in 1 a little while but one of the things he recorded in his diaries was that he would be happy on the days he could go to the toilet because it would stop the pa in and discomfort? ANSWER: Yes. He used to feel so bunged up, that was his words that he used to use.

1,579

16

QUESTION: Even once the AZT was stopped a few weeks before he died he was still being prescribed the steroids? ANSWER: Yes.

1,580

16

QUESTION: He had to take iron tablets because of his anaemi a? ANSWER: Yes.

1,581

16

QUESTION: And morphine for the pain, and you described how he was frightened of that being reduced because he did n't want the pain. ANSWER: No.

1,582

16

QUESTION: So he was taking, even without the AZT, 12 to 13 tablets daily at that point. ANSWER: Yes.

1,583

16

QUESTION: The ulcers had spread down from the mouth to his stomach -- ANSWER: Stomach, yes.

1,584

16

QUESTION: -- you were told and the doctors wanted to start radiation therapy on the ulcers? ANSWER: Yes.

1,585

16

QUESTION: S came home from the hospital for a weekend on 2 16 February? ANSWER: That's right, yes, and he had to go back on the 1 7th.

1,586

16

QUESTION: I think he was quite chatty? ANSWER: He was.

1,587

16

QUESTION: That visit home? ANSWER: That visit home he was very chatty. I've never h eard him chat so much.

1,588

16

QUESTION: He was talking about the new baby? ANSWER: Yes, and that when the baby got bigger and he's g ot his job he was going to get everything for him.

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QUESTION: And then you took him back to hospital on 17 Febr uary for the radiation to begin? ANSWER: Yes. We left him in the evening time. He was fi ne. My baby was three weeks old at the time and we'd go ne up to bed, and then in the early hours of the morni ng we got a phone call and my husband answered it and the nurse said that S wanted us to go up there. So he just said to him, we'll be there at 9 o'clock in th e morning and she said, "Oh, okay", and he put the ph one down. Half-an-hour later the phone rung again. When my husband answered it she said I think you'd bette r come up now. So he went up to the hospital and I g ot a phone call. It was my husband. When he got ther e S had just died. 3 So I had to wake one of my elder sons up to look after the children and I got a minicab up to the hospital. When I got there, as I said, it just loo ked like S was sleeping with a sheet over him. I didn' t know what my husband saw at that time. And even th en, it's stupid --

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QUESTION: It's not stupid. ANSWER: -- but I thought it was a mistake. I sat there w ith him and I was holding his hand and I thought in a minute he'll wake up and that's how he was. But then I felt the nurse kept coming in and then she s aid that she had to do the room ready for the day staff to start, but even in my head I'm thinking why is she saying that for? I didn't want to go but then my husband said to me we'd better go because they -- a nd when I come out, I saw Chris. She was one of the ladies that was with Dr O'Doherty and all I could s ay to her was why? She said to me she didn't know. A nd we went home. We were told that we could go to the haemophilia centre on the Monday and then I could go and see S in the chapel of rest. So we got up and we went there in the morning but when we went in the door, Dr Savidg e met us and his words to us was we didn't really nee d to keep coming up the hospital now. 4 To me, that was telling me S had gone. They didn't have to worry anymore. So I said that we co uld go and see S but we needed somebody to take us down to the chapel of rest because you can't just go down there yourself, so somebody took us down there and we went and saw S down there. They did say to me about the funeral parlour to go to, because they said there'd been a few familie s, that some funeral parlours won't let you view them, so sent me to somewhere where they'd said he's quite nice. In a way, we was lucky because when I got there, I didn't know but when we did get there, the man that run it was the headmaster from my children 's school from before so he knew us and he was -- he u sed to let us go up everyday to see S. Actually, I thi nk it was him that got us through that time.

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QUESTION: At the point when S died he was 15 years old. ANSWER: He was 15, yes.

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QUESTION: You provided the Inquiry with a copy of S's death certificate. Paul, it's 2687005. If we see in cause of death this doesn't mention anything about HIV or AIDS. ANSWER: No.

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QUESTION: Was that at your request? 5 ANSWER: No, it wasn't. I did wonder why it wasn't but, n o, it wasn't.

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QUESTION: That can go down, thanks. After S died you discovered he had been keeping a diary? ANSWER: Yes.

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QUESTION: You've shared with us some of the front pages of the diary. ANSWER: Yes.

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QUESTION: We're going to put that up. If you need it taken down, we will. 2687002, please, Paul. That's one of the diaries S kept. ANSWER: Yes.

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QUESTION: He liked to put pictures on and you've said he wa s meticulous in the way in which he wrote and drew? ANSWER: Very, very.

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QUESTION: Your statement talks about some of the things he put in his diary. Do you want to share any of them or would you like me to or we can just leave that? ANSWER: I'd like you to.

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QUESTION: Okay. So you've told us in your witness statemen t some of the things that S put in his diary. He wro te about how he was feeling, his views about the treatment he was receiving, the pain he was in, his6 aspirations for the future, about how he'd look aft er your new baby when he was older and better and how the baby would want for nothing. You've described how the diaries were very neatly and carefully written. He was very tidy. He wrapped everything in tissue. H e recorded his thoughts and feelings about his illnes s. That's where he wrote he'd noticed how he was treated different because you were very protective of him. ANSWER: Yes.