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QUESTION: SIR BRIAN LANGSTAFF:ANSWER: A.

QUESTION: Q.ANSWER: A.

QUESTION: Mrs D, on 19 May 1986 you went into early labour with your first child. ANSWER: I did, yes.

QUESTION: You were admitted into hospital? ANSWER: Yes.

QUESTION: And on 23 May you were told you had to have a transfusion? ANSWER: That's right, yes.

QUESTION: Before the transfusion was completed it was disconnected and you were sent for an ultrasound? ANSWER: Yes.

QUESTION: And you describe in your statement that it was al l rather strange and you didn't really understand wha t was going on. ANSWER: Yes, that's correct.

QUESTION: Can you tell us a little more about that. ANSWER: Well, I wasn't actually told why I'd got to have the transfusion in the first place. I was just told th e doctors said that you're having it. They put the cannula in. They started the transfusion and -- bu t three-quarters of the way emptying, when the same sister came in and said, "You've got to have it out . You've got to go for a scan". She disconnected me, gave me a cellular blanket to put over the gown that they'd given me, and told me to walk without help, without, you know, anybody el se, to the scanning for an ultrasound. That actually involved going down a corridor out of the building, past the workmen who had got scaffolding up, across the grounds to a small singl e storey building where I had to have the ultrasound.

QUESTION: When you got to the place you needed to have the ultrasound, the radiographer was concerned that you were alone? ANSWER: She was very, very concerned. She was shocked, a nd she said that she was going to call to complain and ask for a porter with a wheelchair to take me back.

QUESTION: Somebody did that and you went back to the ward? ANSWER: Yes, that's correct, yes.

QUESTION: When you got back to the ward, you understood tha t there had been some raised voices amongst the staff ? ANSWER: Yes. The lady in the next bed, because I'd alrea dy been on the ward for three or four days so I'd made , you know, a relationship with the woman in the next bed and she said, in her words, there had been a bi t of a hoo-ha, raised voices, it sounded somebody had been having a go so I thought, oh, the radiographer had phoned and made a complaint and it hadn't gone down too well.

QUESTION: You were never sure whether the hoo-ha was whethe r you had gone to the ultrasound on your own or whether i t was about the transfusion itself? ANSWER: Yes, because I hadn't been told why I got -- ther e was no reason, as I knew then, why I should be having o ne. So I thought at the time when they took it out, par t way through, was it meant for somebody else? Had t hey made a mistake? Was I that person, you know, and especially getting me out of the building. I mean, it did raise concerns.

QUESTION: Before you were given the transfusion, were you w arned about any risks of having it? ANSWER: I wasn't told anything about it at all, even to t he point I didn't know why I was having it.

QUESTION: As a result of that transfusion you were infected with hepatitis C. ANSWER: Yes.

QUESTION: About a year after the transfusion in June 1987 y ou didn't feel quite yourself. ANSWER: No.

QUESTION: Can you tell us what was wrong. ANSWER: I just started feeling down, depressed, lacking i n energy. I just wasn't me. Before I'd been full of life, you know, I did clubs, I was sporting. I'd g ot a young daughter who'd survived the pregnancy becau se I wasn't sure, and I should have been full of life. There was nothing wrong in my life, except for me. I felt just like there was -- I wasn't me anymore.

QUESTION: You've described that you felt like you were carr ying ten other people around with you? ANSWER: That's it. I was just -- everything was exhausti ng.

QUESTION: So you went to the doctor. ANSWER: Yes.

QUESTION: What did the doctor say? ANSWER: You're a working Mum, because I was working, I wa s working full time, you're a working Mum, you're goi ng to be tired. That was it, sort of go away because there's nothing more.

QUESTION: Over the years you have had a number of physical conditions. ANSWER: Yes.

QUESTION: Thyroid cancer, several miscarriages, irritable b owel syndrome, fibromyalgia, an enlarged spleen, undifferentiated connective tissue disease, as well F3 liver disease. ANSWER: Yes.

QUESTION: You are not sure whether they are related to the hepatitis C but you often wonder whether they are? ANSWER: I very much believe, and it has been said to me i n the rheumatology department that it was probably the hepatitis C infection that trigger the autoimmune conditions, which in itself have put me on immune suppressants and that in itself causes you get a co ld, you get sepsis, you don't -- and it makes you feel very ill.

QUESTION: You believe that there's been a really a cycle of illness all arising from the hepatitis C? ANSWER: I do, yes.

QUESTION: You had to stop work in 1998. Why was that? ANSWER: I hadn't felt any better from the time I was tire d in, you know, years earlier, but I started getting more achey, I was exhausted, I was collapsing on the flo or at work. I'd been really pushing myself because I had been doing really well at work, working up for promotion, and after collapsing a few times, I went to the doctors and they gave me sick notes at the time it was called for exhaustion, and it literally was the most awful exhaustion. I just couldn't stand anymo re, which actually felt really embarrassing because it was just like saying, "I can't work anymore because I'm too tired", but it was far more than that, but that 's how it felt and I think that's what other people thought as well. It's just like, you know, you're just tired.

QUESTION: If we fast forward to 2016 because that continued and went on but by 2016 you were really very unwell. ANSWER: I was. I was very, very ill.

QUESTION: What can you tell us about your symptoms at that time, just before your diagnosis? ANSWER: For months I had been being sick, physically sick . I couldn't eat anymore. I was losing weight. I we nt down to just over six stone, which was half my body weight, and there was just no reason. I couldn't find -- you know, I was having monthly blood tests for my autoimmune conditions but nothing was showing up , but I just literally, as my family said, I was dyin g in front of them.

QUESTION: Eventually you were referred to a haematologist - - ANSWER: Yes.

QUESTION: -- who did a series of tests. ANSWER: Yes, quite a few.

QUESTION: And you were then told that the test for hepatiti s C had come back as a positive. With that first test what did the haematologist tell you? ANSWER: Well, he actually phoned me up and told me this o ver the phone. He said not to worry everything else co me back clear but this one had come back as a positive but he didn't believe it was a true positive. He thought it was a false positive because of my immun e conditions and the medication I was on and he could see no reason why it would be positive, so he'd lik e to do a second test.

QUESTION: So you had that second test? ANSWER: I went back and had the second test, yes.

QUESTION: Then what happened? ANSWER: Then I received a phone call from my GP's surgery saying they had received a letter and could I go in to discuss it, which I made an appointment and went in . I was expecting this to be a letter from any one of the departments that I was going, either orthoti cs, rheumatology, anything like that, I went in and I s at down and the GP held up a Public Health England let ter and said, "You're drug taking or a sex worker. You are at risk of infecting everybody. You've got HCV ". I didn't even know what that was. They said, "You' ve probably passed it on to your kid and husband and y ou might die from this".

QUESTION: You said to him that that's not right, that's -- ANSWER: I said, "That's not right, no, no, no. That's a false positive. My haematologist told me 100 per cent. I've had a second test", and he said, "No, no, no", and he said, "No, it's definitely the second test h as proved positive". I mean, I was kind of freaked because all was going whizzing round my head was, "I am going to di e but I've actually killed my kids and husband". Tha t's all I could think, "That's it, we're all going to die". But it was -- I asked what it is and he didn 't know. I said, "What can be done?" He said, "You'l l be referred to somebody", and that was it. I mean, I can still picture the room. I can picture the jumper he was wearing, the pen on the 0 desk, everything, the letter, but it was just -- it was like he'd called me in to say, "You're a dirty disgusting person, a danger to society. I don't kn ow what it is myself but that's what they're saying so go away. You'll get an appointment from somebody else ", and I left.

QUESTION: As you say, you can still remember vividly the de tails of that? ANSWER: I can remember everything about the room. I won' t go in that room. I can remember even the stitching. He'd got a hair on his jumper. The whole lot becam e stuck in my brain. I can still picture it now.

QUESTION: And you still have flashbacks to that day? ANSWER: I do have flashbacks and I was later diagnosed wi th PTSD from that point.

QUESTION: You have described in your statement that you wal ked out of the surgery feeling suicidal. ANSWER: I did. I left, I could not -- I could not comput e or work out what I'd just heard, the consequence, I'd been given nothing to help me understand any of thi s and I just had the GP who'd known me a few years basically say I was a drug-taking prostitute and, y ou know, I'd put everybody at risk with something I didn't even understand, and I left and I drove wh ich now thinking about it I really shouldn't have done, 1 driven in that state, and all I could think of was there was a local viaduct which I was going to go a nd throw myself off.

QUESTION: In order to get to that viaduct you had to drive past your own house. ANSWER: Yes.

QUESTION: As you passed by you realised you couldn't do tha t to the children? ANSWER: Actually, my son was looking out of the window wa iting for me because he knew I was desperately ill, he kn ew I'd gone to the doctors', and he was just, sort of, "Where's Mum? Is she going to know what it is", yo u know, and I just saw his face and I thought, "I can 't, however bad it is, I can't leave them to deal with this without me", so I went into the house instead.

QUESTION: It then took a month before you saw anybody again and on that occasion you saw the haematologist again? ANSWER: Yes, I did.

QUESTION: What was their reaction to how you'd been told ab out the hepatitis C? ANSWER: They were horrified. They were furious. They we re really, really angry, as he'd asked for the tests. He'd asked me if I could -- you know, have the test s, he'd had the tests, he'd had the results, and he wa s so angry that the GP had told me because he was goi ng 2 to tell me in a situation where he could explain a little bit about it and he was just literally furious. He was going to explain about it he said.

QUESTION: He was able to tell you a little more about what hepatitis C was. ANSWER: Yes. He said, "I don't know. I'm a haematologis t", because he had actually been checking for blood cancers, but he'd just screened me for that, for everything. He said it was a liver illness and the re were treatments for it and he was going to refer me off to a hepatologist.

QUESTION: You then had to wait for a few more weeks to see the liver specialist? ANSWER: Yes.

QUESTION: You saw the specialist nurse? ANSWER: Yes, I did.

QUESTION: What happened at that appointment? ANSWER: She was actually brilliant. She was really, real ly helpful. She discussed what it was that I'd got, where I'd, you know, just talked to me to find out about me and we worked back and found out. Then sh e asked if I'd had a transfusion and I said, yes, I'd had this transfusion in 1986, and she said that tha t was more than likely the reason that I'd caught thi s, and she also gave me the numbers for the Hepatitis C 3 Trust and mentioned the online support groups.

QUESTION: You then had a liver scan and established the ext ent of the damage? ANSWER: Yes.

QUESTION: Did any of the doctors explain to you the ways in which hepatitis C can be transmitted? ANSWER: Well, no. I mean, obviously, first off I had the letter saying it was through drugs and sex, and the n my hepatologist nurse said, you know, it's a blood-borne thing, but no -- but even she didn't give me any leaflets, information, or anything to t ell me how you get it really or what precautions you should take or anything. There was just no advice at all. It was just HCV actually means hepatitis C. That's about what I learned but there was nothing, no. I got given no advice.

QUESTION: You didn't have any leaflets or anything to take with you? ANSWER: There was nothing at all, absolutely nothing.

QUESTION: You have two very particular concerns about your infection. Firstly, you have questioned why the infection wasn't identified earlier, given that you were receiving treatment for a number of conditions over the 30 years between the transfusion and the diagnosis.4 ANSWER: Yes, I mean, through every pregnancy you get, ran domly really, just checked for HIV and Hep B and it wasn' t picked up on. I mean, rheumatology, all that, all the tests I had, all the diagnosis, and I know now that if you get -- if somebody is going to be started on treatment for rheumatoid arthritis, they test for H CV now. But that was after they'd started me on treatment; so they didn't test me. They didn't thi nk, "Oh, why has this woman got all these conditions ? We can't find out why". I was put on a ward in the early 2000s through rheumatology for a whole week to see if they could find out what was wrong with me and all they -- wel l, they came up with a diagnosis of fibromyalgia with the thought there might be something else. But, no, ev en through thyroid cancer, on the immune suppressant, 4-weekly tests, nobody ever found out until they thought I had got blood cancer as haematology will screen for everything. I mean, I was at the hospital, yes, my notes were that thick (indicated) , endless tests, endless medications: all the time, never tested.

QUESTION: Your other particular concern is why you were giv en the transfusion and you've said that you were never told why you needed it? 5 ANSWER: I wasn't at the time.

QUESTION: There's also no record of the transfusion in your medical records, is there? ANSWER: There isn't.

QUESTION: When you applied to The Skipton Fund you requeste d your medical records. ANSWER: That's correct.

QUESTION: Can you tell us a little bit more about what happ ened then. ANSWER: Well, I had trouble asking for them and they seem ed to delay in sending them. When I did receive them, there's some notes. I was actually admitted on to the ward on 19 May. There's a page of notes for the 19 th, the 20th, the 21st, the 22nd, then it is goes to th e 24th, the 25th, all the way up to the 29th when I w as discharged having given birth. The 23rd was missing. There's no notes for the transfusion. There's no notes for the ultrasound. There are no notes at all for that date, nothing, y ou know, not temperature, not foetal, there's nothing. So I questioned them on this and said, you know, "T his is -- not only have you not got the bit I know I ne ed, but where is all the supporting notes, all the nurs es' notes", and it was a very lengthy process which end ed up with me putting in a complaint which was ignored . 6 I sent in a letter recorded delivery to the hospital saying, "This is my complaint. I need you to find these notes", to which they said they hadn't received it, even though it was signed as their mai l room. I actually went up to the hospital in person, went to the reception desk and asked them to bring somebody down from the office to hand them my complaint letter and all a sudden they instantly fo und everything, except for the notes. It took, all in all, about ten months from initial request for them to supply me with notes th at they said they'd got and a letter to say that they thought that, due to the timescale and the building moves, that any letters from that time, except for the ones that I got either side of that, had been destroyed or lost and they've never come up with th e day of the 23rd.

QUESTION: So there's no record of 23 May? ANSWER: No.

QUESTION: Also you have noted in your statement that the discharge letter from your admission has a tick in the box to say that you didn't have anaemia? ANSWER: That's correct, which is a surprise because I was anaemic from a child. I've always been anaemic and 7 I'm still anaemic now. I was anaemic before I was admitted but, miraculously, I suddenly became non-anaemic through the time I was there and then e ver since I've been anaemic with transfusion level anae mia with the other three pregnancies I had. So it was just like somebody decided to wipe that day, my transfusion, my anaemia, for whatever reason.

QUESTION: You've said that that's what worries you most, th at they have hidden the fact of the transfusion ? ANSWER: They have hidden the fact because part of me is s ho uld I have had the transfusion? Did I need it? It may have been for anaemia, it probably was -- you know, they would have found I was anaemic anyway. But obviously since looking at things and learning, it' s like was I -- and because of the arguments when I w as at the ultrasound, you know, I personally think was I given the transfusion on -- was I infected on purpose?

QUESTION: You've said in your statement that the whole situ ation around the notes and the lack of the records makes you question whether you were deliberately infected because you were young and healthy and you say mayb e they wanted to see what would happen. ANSWER: That's correct. That still stands today because I have some across through support groups other wom en 8 who were exactly the same age because I was 19, I w as young, and they were 19 and they were given a transfusion for anaemia and there just seems to b e a few cases and it's why did they do it? Why was there not notes there on that day? Why has nobody ever followed me up? Why did they leave me for 30 years, and why does there seem to be such a cover-up over it? If it just been, you know, a regular, "Well, we gave to have a transfusion. We admit you had a transfusion and unfortunately people got infectio ns from them", but it seems to have been deliberately hidden.

QUESTION: You are worried that there continues to be a cove r up because of something that happened when you attende d the hospital in April of this year? ANSWER: That's correct, yes.

QUESTION: Tell us what happened. ANSWER: Well, I'm always at the hospital, I'm always havi ng appointments and, as Andy said before, my notes are quite thick, from obviously regular -- so I notice them coming when the receptionist gets them out. S o I went and sat in an appointment and I saw them lif t the notes and the receptionist went ... and she loo ked concerned and I thought, "Oh no, here we go again. 9 There's going to be a delay. Have they put my stickers with the wrong address", but she put it un der the trolley to the side and she called the clinic nurse and she looked in them and she looked a bit concerned, and I was sort of, "Oh no, I'm going to be in for a real delay and what's concerning about my notes", because having seen rheumatology four weeks before and there was no problem with my notes what' s happened now. There was a really long delay in the clinic during which I had a hearing test and when I was finally called in the doctor said that my notes had been -- although they were in a real mess, they had been messed with and that he couldn't find my previ ous clinic letters, test results, to compare the tests I'd had that day with the previous clinic so could I te ll him about what had happened between the last clinic and when I was attending. I did actually have an oncology follow-up letter from a clinic ten days before with me printed to sh ow him because they cover some of the same things with some blood tests and stuff so I didn't have to have them done again, so I showed him that, which he cop ied some notes down.

QUESTION: Can you remember a little more clearly what you r ecall 0 the doctor saying about the notes. ANSWER: He said that it looked like somebody had messed t hem up and that he couldn't, therefore, find -- and if he tried to look through it could take maybe half-an-h our to an hour or whatever. You know, he thought it wo uld take too long to even look through them all because they were in such a mess. It looked liked somebody had messed them up. "I don't know what somebody's b een doing with these", is what he said.

QUESTION: You're worried that someone's gone through your n otes because you're giving evidence to the Inquiry? ANSWER: Yes, because it wasn't -- nobody was aware that I was going to be giving evidence before, at my rheumatol ogy appointment my notes were fine, and since then, you know, all of a sudden, my notes are a mess, they're not in order, there's pages hanging out which there weren't at the previous appointment and there's no reason for anybody to have done anything with those notes between one appointment and the next.

QUESTION: You are represented by solicitors and the solicit or's contacted the trust? ANSWER: Yes.

QUESTION: They have denied that that is what was said by th e doctor? ANSWER: Yes. 1

QUESTION: And denied that the notes had been accessed by an yone inappropriately. What's your response to that? ANSWER: I say that they -- that it is a further cover-up because the notes were in a terrible mess, the doct or did say that to me, I could see that they were a me ss, and the fact that they used the word "inappropriate ly" means that somebody had looked at them but they had presumably thought it was appropriate to look throu gh them, but they haven't given me any reason as to wh y they were in a mess. I mean, there is no answer to that at all. They've just, you know, got back to t he solicitor and I've seen that letter and it doesn't explain it.

QUESTION: I want to move on from that. ANSWER: That's fine.

QUESTION: You had been diagnosed with hepatitis C in the au tumn of 2016? ANSWER: Yes.

QUESTION: And in January 2017 you were told you would be pu t forward for treatment with Epclusa? ANSWER: That's right.

QUESTION: You then had to wait to start that treatment unti l August in 2017? ANSWER: Yes.2

QUESTION: Why did you have to wait? ANSWER: I was told I would have to wait until the NHS fun ding was available. I was told it was done on a month t o month basis, that who could have their treatment funded that month and that you wouldn't know who it was going to be until they'd had the meeting that month and decided who was going to get the treatmen t, so that if somebody suddenly became a really bad case -- you know, it was you didn't know when you w ere going to get treatment. The nurse said that she wa s retiring in five years' time and I may have had the treatment funded by then.

QUESTION: You feel you shouldn't have waited for treatment. ANSWER: No, I didn't see why on earth I should wait for t he treatment, especially as I'd found out that it was the NHS that had actually given me the infection and caused so many medical problems associated with tha t and the fact I needed the treatment, they should ha ve just made it available there and then.

QUESTION: While you waited for the treatment to start, did you have any support? ANSWER: No. I had no support. Literally, there was just -- I was just left on my own. It was just like I was abandoned to sort of be on your own, there's no advice, there's no counselling, there's no help. 3 "You've got this and you might die before we get th e treatment". I mean, that's how I felt. I thought I was going to die waiting for the treatment, becau se they seemed to have said, "You're really ill. You need this but we're not going to do it until they s ay it's going to be funded", and I waited until I got about a week's notice for the treatment and it was just like "yes".

QUESTION: What would have helped while you had that seven-m onth wait -- obviously, not having the wait -- but if yo u had to have the wait, what would have helped? ANSWER: Well, I thought actually right from -- I think an ybody finding out they've got an infection and especially in the way that anybody's had infection via, you know, the NHS, basically, that you should have counsellin g straight away. I mean, I went through cancer and I had, you know, I got sat down, told the diagnosis, I got tol d what the treatment was going to be, the whole treatment package, you get support lines, you've go t somebody there to -- you know, the leaflets, everything, and I was well looked after when I had my cancer. This just abandoned me to the fears I had, the illness -- you know, the complete lack of knowledge ,4 almost like they wanted me to go away and they wish ed they hadn't found me. I think there should have been counselling. I actually asked in February, the one year, I went to my GP, a different GP because I won't see him anymo re, if I could have counselling because I felt that I'd gone into shock when I got diagnosed. I felt I was n't coping. I thought I needed help and they said they would put me forward to it. I finally got, 12 months later, I got the offer of talking therapy. I went to the appointment. A young woman sat there, and she asked -- well, no, first I got a call saying would I go to a group therapy session and I was like, no, no, no way am I sitting in a room explaining why I'm like I am. So then I had an appointment to see somebody singly an d I went in the room and she listened to me, everythi ng that happened, and she was getting a bit sort of .. . while I was talking and then she says, "I'm getting really stressed just listening to you", which just gave me no hope or, you know, of any help. I mean, I just felt I've just opened my heart, given some trust in somebody which I found really hard since finding out everything, and she just ... like, "I can't cope with this", and she actually, I had t o 5 go back and be referred to somebody else because sh e literally couldn't cope. She didn't understand the situation and she couldn't help me.

QUESTION: So that period of counselling came to an end? ANSWER: It came to an end rather abruptly, yes.

QUESTION: Eventually you were referred for some sessions fo r cognitive behavioural therapy and eye movement desensitisation and reprocessing treatment? ANSWER: That's right, yes.

QUESTION: You have said that that therapy came to an end fo r reasons that we will come to. ANSWER: Yes.

QUESTION: But you've said that the fact that the number of sessions was limited to 10 to 12 was in itself difficult. ANSWER: It is, because if you get therapy and you need to keep talk through something that's also not just been so traumatic but, you know, it's ongoing and you need to take the time to do it, to be told at the start, "Well, you've only got 10 to 12 sessions to actuall y be cured of your psychological problems, your depression, your anxiety, all this has got to be do ne because we only get funding for 10 to 12 sessions", it's like adding extra pressure to something that's awful already.6

QUESTION: While you were on the treatment with Epclusa can you tell us how you were? ANSWER: Well, I was hoping to actually have no side effec ts because it was, you know, all I'd heard was it's really good, you take it for 12 weeks, you'll be fi ne, but I wasn't. I don't know whether it was just unlucky or whether it's the association of the multiple drugs I'm on and it reacted with those. I was very sick. I was very tired. I had headaches. I couldn't sleep. I was shaky. I got hearing loss worse than I had before and I became desperately in a dark place that I'd never felt. I mean, I'd been depressed but this was just horrendous and it scared me. And then it cleared a bit, and the next day, and I realised that it was sort of two to three hours after I had taken the tablet this just wave of overwhelming awfulness that you just -- it takes yo u to a different place. It's like you have been take n out of yourself and there's just this scared shell that can't actually see life straight anymore. It's -- like you're in a fish bowl. Life doesn't s eem real. It was horrible. I felt out of control and it went on and it went on and I started getting dizzie r 7 and I felt more down and -- from being able to cope in a way, I hate to refer to Andy but he said you lear n to deal with the thing, and I dealt with the cancer , I'd stayed confident, looked after my kids. It rea lly knocked me sideways and I haven't been the same sin ce, since that. I mean, I was having the tests while I was having it as well and I'd heard great things about people's numbers dropping. Mine took to after 12 weeks to drop, so I was scared it wasn't going to w ork and actually the nurse didn't think it was going to work, but the test four weeks after I'd finished showed it had actually cleared, which was a bonus. But I've never felt the same since having it.

QUESTION: Your hair turned a different colour as well? ANSWER: Yes, I had -- if you imagine that I'd been ill, I couldn't be the fit, healthy, happy person already, then having gone down to 6 stone, I was skeletal an d I felt horrible. The one thing I had left was waist-length hair, a lot of it. The treatment, it started changing colour as it was growing out and each month my hairdresser said it's like looking at the rings on a tree, the time-lines, it went yellow, it went a funny colour and it all started breaking off and falling out. 8 I ended up with just horrible stubble and I know it sounds stupid because everything, everybody goes through in the illness, but that's just hit me so hard. It was just the last little bit of you, it w as me, it was just that last bit of nothing to do with the illness. I'd still got my hair, stupid and vai n, but it was just that one thing that kept me going.

QUESTION: You said in your statement: "My hair was the last thing I had and that destroyed my self-confidence." ANSWER: I just didn't feel like a woman anymore. I didn' t feel like a person. I was just this ill, skeletal thing that ... you know.

QUESTION: You have continued to feel really quite unwell, e ven after the treatment? ANSWER: Yes, I have not felt well since. I just felt -- I've never felt well. I haven't felt well since 1987 bu t I've been through everything else and gone through everything else and I've just felt worse and worse and worse, and I was so hoping the treatment would make me better. All it did was get rid of the hep c -- all it did, that sounds like it's belittling it because it 's a big thing to get rid of it, but that's it, it's d one that. It hasn't changed my life. It hasn't change d 9 my health. It hasn't given me that I'm okay now.

QUESTION: Mrs D, I'm conscious we've been talking for a lit tle bit more than half-an-hour. Do you want to take a break at this point? ANSWER: No, I'm fine. I'll carry on. I'll just keep cry ing in my tissue.

QUESTION: As you say, you've cleared the virus. ANSWER: Yes.

QUESTION: And you have now been discharged from the liver t eam? ANSWER: Yes.

QUESTION: But that in itself is making you anxious. Can yo u explain why? ANSWER: Because it was, "You've cleared it, goodbye". I was told I'd got, you know, F3 nearly F4, you know, I'd got severe fibrosis, it was obvious, it was nearly cirrhosis, and I am on a lot of other things and there's no follow up. There was no, well, you know , I mean, I've already had cancer. I'm on immune suppressants which makes you more likely of cancer and having had hepatitis C there's another high risk of liver cancer and I hoped or I think I should be checked every six months or so to catch something early. You know, it was 30 years before they found that. I'd like them to catch something like that 0 a bit quicker but it's not the case. It's, "No, you've cleared it, you no longer need" -- from a mental okay, for just the knowledge that every si x months they could check there's nothing else going to rear its ugly head would be at least helpful but th ey don't want to do that.

QUESTION: Since your diagnosis, your rheumatology team has changed? ANSWER: Yes, it has.

QUESTION: As has your oncology team? ANSWER: Yes.

QUESTION: And you think that is because of your hepatitis diagnosis? ANSWER: I do. I found a change in an awful lot of people as soon as I got that diagnosis. I wouldn't see the consultant I'd been seeing for ten years. I'd suddenly have to see somebody else. The four-weekly blood tests which became almost like a community day because you would go and you'd see the same people, you would see the same phlebotomists, they would be chatty. They stopped being chatty. Where I have to have my blood tests it's lots of little cubicles with curtains, and the y always leave all the curtains open, so it's like fi ve or six people having blood tests and, of course, it 1 said special precautions on every test after that, so they'd get the gloves, and then you'd see other peo ple looking and you are thinking they're going, "They'r e getting gloves for that person. They've got something". But it was the reaction from everybody. It's like the doctors suddenly didn't want to see me. I do not know whether it was suddenly, perhaps they felt guilty they hadn't found it or they, you know, they knew somewhere in my notes that it had said they hadn't told me. They didn't want to do anything wi th it. The rheumatologist stopped seeing me, who had been seeing me for years, yet he saw me a month or so ago and said, the appointment before the last one, and he said, "Oh, I saw that you're infection was from a transfusion", and he mentioned that and I was jus t like, "Yes, it was yet", yet he saw me then and he hadn't seen me for years. My oncology team was the same, all of a sudden the person who's been seeing me didn't want to see me anymore. It made me feel dirty. It made me feel l ike I was in the way in their clinic, like they suddenl y wanted to shuffle me off like into the cloakroom or something, you know, "Somebody else go and see that2 person because they got that", and that's how I fel t.

QUESTION: You have also had a very serious issue with your now ex-neighbours? ANSWER: Yes, I have. Well, I think it's the ex-neighbour s, you know, because I never found out who it was -- which is the reason I get emotional because I know it's coming. I obviously got in touch with the EIBSS and I, you know, got letters. One of my letters didn't arrive. I didn't know it was sent out but it hadn' t arrived. The only reason I know it didn't arrive w as because I got -- I had a letter come through the do or through the post with my name on it, opened it up. At the top of the letter it had got my name and my payment beneficiary ID number for better -- I don't know what else you'd call it.

QUESTION: The EIBSS reference number I think you called it. ANSWER: That's it, yes. And somebody'd written they didn 't want dirty bloody people like us in their community . They didn't want to be in the doctor's with me, the y didn't want to be sitting on the bus next to us, th ey didn't want their kids to have to go to the same school as my kids. They thought that I should leav e or hurry up and die. But I scanned down and the wo rst bit said -- and I don't want anybody else in the ro om 3 to be upset by this.

QUESTION: I'm happy to read it if it is too upsetting for y ou. ANSWER: Yes, if you would please.

QUESTION: "They said that people like us should be taken in to a field and shot and then our bodies burned like a cull of cows and badgers." ANSWER: Which is kind of pretty difficult to take about y our son. It wasn't just for myself, it was for my kids . I mean, they were saying it about my kids as well.

QUESTION: You shredded the letter and got in touch with the police. ANSWER: I wanted it destroyed, yes.

QUESTION: Sadly, things didn't end there, did they? ANSWER: No, it didn't. I mean, I did phone the police an d actually I spoke to a woman police officer who said that she'd actually experienced -- she'd been a pol ice officer in the '80s when she'd experienced stigma w ith the HIV and AIDS people, so she was concerned that this might escalate but hoped it wouldn't. Then we had dead pigeons, dead rats , dead mice, dead squirrels thrown at the front door, on the dri ve. My son's -- my son is disabled and we have a wheelchair access ramp and somebody'd sprayed tom ato ketchup across it "people die" and just doing it li ke blood and dirty blood and words running down the ba ck. 4 You'd never knew what to go out to.

QUESTION: It went on for quite some time, didn't it? ANSWER: It did go on for some time. I mean, I had securi ty cameras up where I lived. You couldn't see but you could just see the stuff being thrown on to the dri ve. I mean, the cameras stopped the van being sprayed b ut you couldn't see who. You could just see these dea d things being thrown at the house.

QUESTION: You and the family were terrified that perhaps something worse would happen, that the house would be burnt down? ANSWER: We did. It just made it very clear that it was, like, leave or die. And I was petrified. I mean, I had to make my children aware that there was a threat. I had to say "don't go outside the door" because I didn't want them to have to see these things we had to cle ar up. My children became desperately, desperately miserable. They stopped seeing all their friends, they had to go under CAMS, the mental health servic e, but then they didn't trust to tell them just how ba d it was or what was going on in case, in their minds , maybe they might not want -- you know, they might think the same things of them, to the point that my one son wouldn't go to college anymore. My other s on was at school. He wouldn't go to school. He's mea nt 5 to be doing his GCSEs now. He hasn't been to schoo l in months. It destroyed him. He didn't want to li ve anymore. He didn't trust anybody. He said if this is what life is like and how people are in the world, what's the point?

QUESTION: After about five months you were able to move? ANSWER: Yes.

QUESTION: Move house? ANSWER: Yes. We had to wait for the council. Because of the financial position that my husband and I had been p ut in through the illness, we had to rent from social housing. So we had to wait for them to find somewh ere and agree it and for us to move.

QUESTION: But since you've moved house, it's obviously got an ongoing impact, as you've said, on you and your family. ANSWER: Yes.

QUESTION: But more recently you've again had issues with le tters from the EIBSS. ANSWER: Yes. I mean, I did complain to the Royal Mail at the time when the one letter -- because it was obvious that the one letter had gone missing because it had got my EIBSS number on which showed that they'd -- somebody had read it. I again didn't have EIBSS letters arrive and the 6 two that did arrive arrived in damaged bags that ha d been opened, very obviously been opened, and glued back down to the fact that it actually glued the letter to the envelope so it ripped when I opened i t. And I'm constantly in touch with the Royal Mail. I'm in touch with the police. They say it's down t o the Royal Mail. But it's really concerning because it happened at the previous address. I've moved and t he same thing is happening at a completely different address, but it's all the letters from the same pla ce. Now, I got in touch with EIBSS and said "It says NH S BSSA there on the back of my envelope, please send it in a plain envelope" which I thought would be a ver y simple solution so that if anybody in the postal system -- because by then I was thinking it's got t o be somebody in the postal system because it's happening time after time. I thought it would be a really simple option and that didn't happen as fa r as I know.

QUESTION: You've had two letters arrive in plastic bags whi ch have been opened? ANSWER: Yes.

QUESTION: And then last month another letter has gone missi ng? ANSWER: Another letter, yes. I mean, I really, really ri pped into the Royal Mail over it because it was a new 7 address and I was, like, oh my god, my kid's are go ing to be -- somebody's going to find out where we are again, the whole thing's going to start again, and they said 100 per cent it was all going to be sorte d and everything. And then a letter didn't arrive. My thoughts personally is that whoever's opening them and causing this problem has gone "I can't sen d it in a damage bag because it's going to be investigated, I'll just hold on to it and it will never get there". I mean, and they said you will h ave to wait -- even though they knew all the trouble wi th the, like, six or seven letters that I'd had a prob lem with and it is only from this place, no other post goes missing. They said I'd got to wait 15 working days to say it was missing, so I had to wait that a nd then I had to phone up again, which is quite stress ful and traumatic having to phone up again and again an d try and sort this out.

QUESTION: You say you have asked the EIBSS to send things i n plain envelopes but you don't think that can be hav e been happening because of the most recent letter go ing missing. ANSWER: Yes.