Datasets:

pnadel
/

npi_all_transcripts

Dataset card Data Studio Files Files and versions Community

Split (1)

train · 47k rows

Unnamed: 0 int64 0 47k	index int64 0 357	q_a stringlengths 22 51.4k ⌀
1,200	12	QUESTION: What can you recall about that? ANSWER: I mean, as far as hospitals go it wasn't -- it wa sn't awful. I remember sort of being sort of chaperoned in. She had her own room so we would often be in there with her. I'd sit alongside her, cuddle with her, and try and see her as much as possible. It w as a hospital, so it wasn't the most comfortable of places or the nicest of places but it wasn't awful or terrible. My Mum was clearly very sick and very il l and, yeah, we would visit as much as we could. 3 My father's ward was in the same area but a couple of corridors down but I was directed sort of straight past. I wasn't given any access towards h im so I didn't see him.
1,201	12	QUESTION: At some point around this time you yourself had t o be tested for HIV? ANSWER: Mm-hm.
1,202	12	QUESTION: Can you recall anything about that or your reacti on? ANSWER: Yeah, I think I screamed the hospital down. Agai n, I didn't understand really what was going on and, o f course, being a nine year old child didn't like the sight of needles at all. I screamed and kicked up a fuss but, yeah, that's a very, very strong, vivid memory and I do remember having the talk from a consultant at nine years old about the importance of, potentially, if I was to ever become pregnant, at nine years old. Yeah, the risks and if I was to ha ve a haemophiliac son or carrier potentially what the -- yeah, like what could be the outcome of that. So, yeah, I had the birds and the bees talk at a very young age.
1,203	12	QUESTION: Just to put this in context you have given us a p hoto of you at that age. It is 1455006, please, Paul. This is you at that age. 4 Your father died on 11 August 1993 in hospital and then what happened to your mother after that? ANSWER: So she passed away eight days later on 19 August.
1,204	12	QUESTION: So you were nine years old, both your parents had died. What happened to you and your half brothers? ANSWER: So we were separated, so my brothers went to stay with a relative of theirs from previous marriage and I subsequently moved away from the area and lived w ith my other relatives.
1,205	12	QUESTION: How was it, having lost both your parents, being separated then from your brothers? ANSWER: It was shattering and up until that point, I alwa ys knew them as my brothers. Regardless of if they we re from a previous marriage we were a family unit and we should have been together and should have remained together growing up. That's what you would just ta ke for granted with growing up within a family. It was the hardest thing to deal with being separated from them. Not only did I lose my parent s, I lost my brothers who were the next closest thing to me and it would rip me apart every time I would go and visit them and have to come back. I would be grief-stricken for weeks after visiting them. I ju st wanted to be with them.
1,206	12	QUESTION: You said in your statement every time you'd be 5 separated from them again after seeing them during the holidays, you would have to leave them, you would b e grief-stricken and you just wanted to be a family again. ANSWER: Yes.
1,207	12	QUESTION: You moved to live with relatives so you had to mo ve schools, I think? ANSWER: Yes, that's right.
1,208	12	QUESTION: Were you able to talk to people or tell anyone ab out what had happened to you and how your parents had died? ANSWER: No. I do remember being told by my relatives tha t it was absolutely crucial not to mention how my parent s had died. We would be subject to huge stigma. I mean, it was probably a blessing in disguise havi ng moved away from the area, so I wasn't surrounded by friends and the talk of the village, that people wo uld have known what had happened and question s would ha ve been asked. So that was probably, looking back in hindsight, probably helped a lot so it was easy to just sort of step in as the new girl and not have t o explain myself. So, yeah, I just didn't breathe a word of it.
1,209	12	QUESTION: You threw yourself into your schoolwork? ANSWER: Mm-hm.6
1,210	12	QUESTION: But life with the relatives that you were living with was not the best? ANSWER: Mm-hm.
1,211	12	QUESTION: Can you tell us a little about that. ANSWER: I think -- I came from a very loving family. My mother would shower me and would constantly be cuddling and hugging me and I had two older brother s who, as much as I probably absolutely annoyed the h ell out of them, they would do things for me, I was the ir little sister. I pestered them to come and play an d take me for bike rides and things, and I'd gone fro m a very normal, which I thought was normal, family existence into a family that I think -- I mean, obviously a terrible thing had happened. It was ve ry hard for everyone to pick up the pieces and cope bu t I was in a family that I never really -- I never co uld call my family. I never felt fully like I belonged . It was quite a sort of an environment where everyone was just trying to survive. It was quite a cold environment. It was -- I was very lonely, f elt quite alone, isolated, and I was going into a famil y where I was disrupting things. So I had a relative that was suddenly like having to deal with another person there fighting for the attention and it's -- it was honestly the hardest years of my life. 7 I don't really know -- it's really hard to explain but it was so different to what I was used to and I never -- I just never relaxed there, never fe lt like I really was -- really belonged and could be myself.
1,212	12	QUESTION: So you lived there from around the age of nine af ter your parents' death until you were 17? ANSWER: Mm-hm.
1,213	12	QUESTION: Then what happened when you were 17? ANSWER: We had a very close family friend that lived in t he same village and I think there was just one day, nothing particularly sort of really happened. I ca n't really remember. I just remember turning up on the ir doorstep in floods of tears and just said I can't carry on and they -- the family friend had been goo d friends of ours for years growing up through school so knew a lot about the background and everything that had -- so that was something that my relatives, the one family that they could confide in and open up t o, so they knew pretty much everything that had been going on so they expected me -- when they opened th e door, their words were, "We were waiting for this d ay to happen".
1,214	12	QUESTION: So they took you in? ANSWER: Mm-hm.8
1,215	12	QUESTION: You didn't go back to live with your relatives ag ain? ANSWER: (Shook head)
1,216	12	QUESTION: Can you recall how your relatives reacted to you leaving home in that way, or leaving their home in that way? ANSWER: They weren't happy at all. Not more ... they didn't -- they weren't unhappy about it because the y loved me and they wanted me to stay , it was how it was going to look to them that I'd left and what questi ons it would raise and they wouldn't be receiving benef its or payments for me. That would stop, and that was what I was informed of. So I wasn't sort of begged or asked or sort of plead to sort of come back because we need you, we love you, we can't set aside our differences, it was ... and that was it. It really didn't go down well and because of that, my relative didn't want anything else to do with me.
1,217	12	QUESTION: You would send for a while Christmas and birthday cards? ANSWER: Mm-hm.
1,218	12	QUESTION: What would happen to those? ANSWER: They would come back unopened.
1,219	12	QUESTION: So you've stayed with family friends and I think you finished sixth form and then what did you go on to do? 9 ANSWER: Looking back on things now, I mean, I did an art foundation degree but I think I was quite lost. I didn't really know what I wanted to do. Did a foundation degree in art but I didn't really enjo y it, so I just sort of went into retail, got retail jobs, did often like other courses, part-time cours es, evening courses, dabbling in other things, but I fe lt like I just was sort of not really going, doing anything or really enjoying life that much. I was just sort of coasting through life. I had always wanted to travel but I never had the funds or the means to do so. Obviously, sort o f being in retail is not the best paid job, so it was always something that I would sort of dream about t hen eventually I -- well, I wanted to do something. This was probably within like my early 20s. I was like I really want to travel but I definitely can't afford to do it, how else can I do it? So a friend mentioned to me, "Oh, why don't you think about doing cruise ships", and I thought that's rea lly good idea. So me being myself went online that nig ht, researched it all and applied for somewhere that ni ght and, yeah, within a few months I was interviewed, d id all the necessary things that I needed to do and wa s gone, packed off and went to work on cruise ships f or 0 about four years, and they were the best years of m y life, really, and I still have friends from that pa rt of my life that are like family to me now and it taught me a lot. I got away from life, travelled, it broadened my life experiences and friendships and, yeah, it was a very, very good time, part of my lif e.
1,220	12	QUESTION: You made I think a particular friend and have -- a best friend, and have settled back in the south-west? ANSWER: Mm-hm.
1,221	12	QUESTION: Where you live and work now? ANSWER: Mm-hm.
1,222	12	QUESTION: What work do you do, Lauren? ANSWER: Sorry?
1,223	12	QUESTION: You were working as a makeup artist, I think, whe n you did your statement? ANSWER: Yes. So I actually -- well, I'm not from the south-west, so having been on cruise ships, had com e to visit a friend from one of my first contracts an d stayed with her for the summer in Bristol and had every intention of going back on my next contract a nd I thought whilst I was there I would look for a job just to tide me over for the summer and previously, years ago, when I was in retail and doing my part-t ime courses I did study makeup and beauty, and had alwa ys 1 wanted to work for a company called MAC Cosmetics. At the time where I used to live there wasn't a local store so it wasn't really something that wa s feasible. Had gone to Bristol, was walking around the town, handing out CVs and there was a MAC counter a nd I thought try my luck, just hand my CV in, not real ly thinking that much of it. Having come away I was like, well, actually if I do get this job, this was my dream job. They, at the time, were the pinnacle so rt of up there with any makeup brand to work for that was the brand you would want to work for. I was like it was notoriously very hard to get a job with them. I'd known people that had probabl y applied about four or five times and still weren't successful so I wasn't really holding out too much but I did have in the back of my mind if I did get it, then I would have to stay and begin my career with them and I did get the job and I'm now -- have been working with them for five years. So, yeah, it was my dream job.
1,224	12	QUESTION: For many years you didn't tell anyone other than I think, perhaps, the closest of friends about what had happened to you and you didn't talk openly or publicly about it but that changed in the last few years. What happened? How did that come about? 2 ANSWER: It actually all began with MAC. So I was their charity ambassador because they have a charity call ed the MAC AIDS Fund, so it was all to do with HIV and AIDS and when I actually applied for the job, that was the first time I'd ever said to someone, because I had that tie and that, having researched the company, I knew as well not only was it the best makeup bran d to ever work for they had that something very dear to me and I said that this is something that's very cl ose to my heart with what had happened and it began fro m there. I started -- I was the charity ambassador for the store and for the south-west. I would go and d o talks to -- and training and facilitate trainings where I would be speaking to other employees and I began to talk about my experiences and my story then. I mean, it was still only within sort of the security of being with people that obviously had th e knowledge and the education, so I wasn't stigmatise d at all because everyone had a full understanding an d I was explaining this to, so I still had that secur ity and that bumper within our little -- my work commun ity that I could freely sort of talk about it. Then that gave me that sort of first little step 3 into sort of being able to speak openly and having a surprisingly good reaction from it, and then it w as off the back of watching Panorama TV show where I actually realised that having spoken to someone f rom our campaign group, they've got in touch at the tim e that I could do more and could be a part of the campaign group and it all happened quite quickly. The media loved me so that was it. I literally was lik e, right, this is the time to actually set anything aside, any anxiety or what other people were going to think and openly tell my story, and we're here now.
1,225	12	QUESTION: Can I ask you about the support or lack of suppor t that there was for you around the time of your parents' death and afterwards. You've described ho w you were sent off to live with relatives. Was there any kind of care or assistance or support from social workers or anyone else that was provided to you? ANSWER: I think we did -- there was a social worker. It' s really difficult for me to remember exactly. I do remember, I think there were a number of maybe soci al workers or counsellors but I wasn't -- I don't know whether that was something that was provided to us or whether my relatives seek that for me but it didn't really ever really go very far or I wasn't really 4 comfortable speaking to strangers. I don't think t hey ever really got a lot out of me, so that didn't rea lly continue for that long. As regards to sort of the rest of the family and support, I don't think we really had anything else.
1,226	12	QUESTION: You've said in your statement that in relation to the relatives you were staying with you got the sense there was no support being provided to them and tha t then had a knock-on effect in terms of your relationships but also other family members, a grandfather who couldn't be cared for? ANSWER: It affected the entire family. So no-one was rea lly given any support. We were all just left to muddle through. We were almost all just sort of -- I don' t know, just bouncing around one another. We weren't able to openly speak about it within the family. It was very much all brushed under the carpet. No-one dare say anything and suppressing a ll those feelings, it wasn't -- it was not a healthy environment to be in for any of us and it took its toll and everyone struggled immensely.
1,227	12	QUESTION: What about financial support? I think you though t there was a limited amount of assistance given from the Macfarlane Trust to your relatives to assist bu t you say in your statement, as far as you know, it w as 5 very little and you had to go without a lot of thin gs. ANSWER: Yes, obviously, it was not only did my -- like my relatives and the family struggle financially, they suddenly had this extra person in the family, an ex tra mouth to feed, and my relative was at this point a single parent. We were on benefits. We had very , very little and it was always very well known that we couldn't -- we had to -- we lived on the bread line . We couldn't have luxuries or do things as a family to sort of escape from things. We didn't have family holidays to sort of bond or remove us out of the situation for, what, it could have been for a week or so or do things together. It was just a constant stress and struggle which didn't help the situation . So, yeah, we did go without for the entire -- from what I remember, the entire time of growing up .
1,228	12	QUESTION: You had no continuing financial support from the Macfarlane Trust and you've made the observation in your statement having been orphaned at such a young age, you have got no financial support from parents available to you and no hope of doing something lik e getting on the property ladder? ANSWER: Absolutely not, no. It's never been something I could aspire to, having left and lived sort of independen tly from quite a young age, sort of 18/19, it was 6 impossible to save. I was just existing and trying to get by and live until this day. I don't ever see myself ever really getting on to the property ladde r and having had the security of living in a family h ome where I could save, I didn't have that opportunity, so that was something that was taken away from me.
1,229	12	QUESTION: You very recently applied to The Skipton Fund and received some payments from The Skipton Fund but is this right you weren't even aware of the Skipton Fund's existence for years? ANSWER: No, I was told by a fellow campaign member.
1,230	12	QUESTION: And that's really in the last couple of years tha t you have found out about it and made those applications ? ANSWER: Yes.
1,231	12	QUESTION: There's one document I wanted to put up on screen . Again, it's another document that you have kindly supplied the Inquiry with. Paul, it's the MP's letter. I think it is 007. So we can see, Lauren, this is a letter from an MP in July 1993 to your Mum and you've discovered I think more recently that she'd written letters asking for help? ANSWER: Yes.
1,232	12	QUESTION: And this is really only a month before she died? ANSWER: Mm-hm. 7
1,233	12	QUESTION: Although we don't I think have her letter to the MP, we've got a response. Could we just highlight the second paragraph, please, Paul. The MP is saying: "It seems clear to me that whoever set up the rules under which the Macfarlane Trust operates did not take into account the sort of situation in whic h you [that was your Mum] now find yourself." Then the suggestion is made by the MP it "may be unintentional" and a reference being made to your Mum's letter being sent on to Number 10 Downing Str eet asking for the Prime Minister's support in relation to the Macfarlane Trust, that they make an exception o r allow amendments to the Trust for fair payments to be given. I know you wouldn't have known about this at the time. Have you found amongst your mother's effects any response to that letter? ANSWER: No. It I may be somewhere but I don't think -- I don't have it.
1,234	12	QUESTION: We will see if we can find out if they ever did respond to your Mum. Just a couple of other points, Lauren, before we conclude. You weren't allowed or you were advised not to go to your Mum's funeral? ANSWER: Mm-hm.8
1,235	12	QUESTION: You've made the point in your statement that your parents don't have their real cause of death HIV/AI DS on their death certificates. Is that significant to you? ANSWER: Yes. I can see why back then it was maybe someth ing that would be for the best. However, I think now w e need the truth out there as the infections that the y did actually die of are clearly stated on the death certificates. It shouldn't be hidden anymore and w e need it to be fully open as to and not -- I mean, w e don't have the stigma attached and associated with it now and so I think it is important now to have the real cause of death on the death records.
1,236	12	QUESTION: You have said in your statement that you feel lik e the children of the infected are being neglected, no re al support available, often overlooked by the financia l support schemes. Is that one of the reasons you have undertaken the campaigning and profile-raising you have? ANSWER: Yes, because speaking purely on my own experience , I lost both my parents at nine years old, at no fau lt of my own and, subsequently, my life has been awful and having some kind of financial support wouldn't make things better, it would never bring my parents back, but it would make my life a little bit easier 9 and having that security of some financial support would be a great burden off of my shoulders, knowin g that I can live a life that has been mapped out in front of me and I don't have that financial support , I don't have a family or if I would -- I don't even comprehend having a family because I don't have tha t backing, that financial backing behind me. So, yeah, it's probably held me back a lot and it's not our fault and we deserve, I think -- my parents lost their lives, had their lives cut short . We deserve, being their children, to have a good li fe beyond that. It's the least we could have or want.
1,237	12	QUESTION: Lauren, that concludes my questions for you. Is there anything else you would like to add? ANSWER: I don't think so. I mean, today's quite a poigna nt day for me because it is actually my father's birth day so I'm doing this in honour of my parents, and yeah .
1,238	12	QUESTION: I am just going to turn my back on you and ask Mr Snowden who, as you know, represents you, and as k if there's anything else he'd like to ask. Just one matter Mr Snowden raises, you may or may not know the answer. Do you know whether there were ever any inquests into your parents' deaths? ANSWER: As far as I know, no.
1,239	13	QUESTION: Michelle, you were infected with hepatitis C foll owing blood transfusions in the 1980s? ANSWER: Yes, that's right -- 1987.
1,240	13	QUESTION: You're aware you received blood transfusions on a t least two occasions relating to the birth of your children. What hospital was that at? ANSWER: So that was Barking Maternity Hospital in Barking in Essex.
1,241	13	QUESTION: Your first child you gave birth to in 1987. You had pre-eclampsia and you had certain difficulties in relation to the birth which resulted in you being given a blood transfusion. Can you recall any of the details? ANSWER: Yes, I haemorrhaged quite a lot and I just though t everybody felt like that after they'd had a baby. I couldn't stand up properly. Everything was just like this, my nails, my lips -- it was, you know, I just didn't feel right and one of the nurses said to me, "We've done your -- we've checked your bloods a nd you actually need to have four units transfused".
1,242	13	QUESTION: You have not been able to get hold of any materni ty records from that time. They have been destroyed? ANSWER: They've been destroyed, yes.
1,243	13	QUESTION: But your recollection is that you received blood over quite a long period of time on that occasion? ANSWER: Yes, it was about 18-and-a-half hours.
1,244	13	QUESTION: Can you recall how that transfusion made you feel ? ANSWER: Well, actually, it actually made me feel quite go od because I was then suddenly I had a bit of the ener gy back in my body and I've never had a baby before so you just go on and get along with it and sort of jo lly on.
1,245	13	QUESTION: You gave birth to your second child in 1989? ANSWER: Yes.
1,246	13	QUESTION: Again, you had some complications in relation to that pregnancy gestational diabetes? ANSWER: Yes, that's right.
1,247	13	QUESTION: You lost some blood on that occasion and you were given iron tablets but you didn't require a transfusion. ANSWER: Not at that time, no.
1,248	13	QUESTION: But you did get given a document after that, I th ink. ANSWER: Yes.
1,249	13	QUESTION: Could we have up on screen please, Paul, 276002. If you look at the screen in front of you, Michelle. ANSWER: Yes, that was actually sent to me through the pos t when I was having a rather late blood test with the second child, Lauren, I must have been about 30/32 weeks because it was the same time that I found out I had gestational diabetes so both the letters came through at the same time, and I looked at that and at that time it was all kind of in the news sadly abou t AIDS and HIV and, with panicking, I rung my mother-in-law up at work and I was like, "Oh my God , something's wrong with my blood", and I panicked an d panicked and I managed to keep this card all the ti me. If ever I have to have another blood transfusion, t hey have to carefully cross-match.
1,250	13	QUESTION: It refers to your blood containing atypical antibodies. Did anyone ever explain to you what wa s meant by that? ANSWER: No, nothing. I did ask one of the midwives and s he said, "Oh, that's perfectly normal. You've had a blood transfusion".
1,251	13	QUESTION: Now, you then had your third pregnancy with twins . ANSWER: Yes.
1,252	13	QUESTION: You described in your statement that you remember that being awful throughout? ANSWER: It was. It was an awful pregnancy.
1,253	13	QUESTION: You had to have an emergency caesarean section? ANSWER: Yes, I did.
1,254	13	QUESTION: Did that result again in you having to have a blo od transfusion? ANSWER: Well, it's a little bit awkward with that one bec ause it was an emergency they actually I wasn't awake because the twins had actually stopped breathing at that point and on my note from the doctor, the pati ent summary care report that they keep, it says two uni ts given at birth but I didn't -- well, I had a caesar ean but I don't know but I had two units further on because they kept me in for ten days. They wouldn' t discharge me.
1,255	13	QUESTION: So after the twins were born you recall having a blood transfusion of two units? ANSWER: Yes.
1,256	13	QUESTION: It may be that you also had one during the surger y itself? ANSWER: Yes.
1,257	13	QUESTION: Can you recall anything about the physical surroundings in which this admission to hospital to ok place? ANSWER: Yes, it was really strange actually because so in Barking Maternity they have got two -- well, it's n ot there now but it was two very long wards, one on to p of the other, and I was rushed upstairs which was totally closed down, the operating theatre was not being used, and the twins were born there.
1,258	13	QUESTION: And this was early in 1991? ANSWER: February, yes.
1,259	13	QUESTION: You went home with the twins and then you moved i n 1992 to Clacton? ANSWER: Yes.
1,260	13	QUESTION: And you registered with a new doctor? ANSWER: Yes, I did.
1,261	13	QUESTION: Some time around this time in the early mid-1990s you saw something on TV. What was it? ANSWER: I can't quite actually remember what it actually was but I knew it was something about the screening of blood and some information. There was a telephone number which I telephoned. They sent me some, like a magazine come through, and it was advised to go t o your GP, which I did.
1,262	13	QUESTION: Was it something about blood transfusions and infection? ANSWER: Yes. It was, from what I can remember, and that' s how I'd heard about hepatitis C, it was if you'd had tattoos, dentistry or operations abroad, blood transfusions, et cetera.
1,263	13	QUESTION: Were you already experiencing by that time any symptoms? ANSWER: Well, I was really, really tired but then I had f our children in three and a half years so ...
1,264	13	QUESTION: So you called the help-line and they suggested th at amongst other things you make an appointment to see your GP? ANSWER: Yes.
1,265	13	QUESTION: That's what you did? ANSWER: That's what I did, yes.
1,266	13	QUESTION: So you went to see your GP and you asked for a bl ood test because you were concerned, having heard about this, that you might have been exposed to hepatitis C? ANSWER: Yes.
1,267	13	QUESTION: What happened? ANSWER: So I went in to see him, explained that I was, yo u know, exhausted, absolutely exhausted and that I'd had two separate blood transfusions before the bloods w ere screened and he said to me, "Well, you will be tire d, you've got four young children. I don't know what you expect, and as to the blood test don't be silly you won't have that", and that was it. "Get out of my office. Don't ..." you know, he made me feel like a silly little girl and as a young mum, you know, y ou look at your professionals, you trust them, I belie ved him and off I went.
1,268	13	QUESTION: So then 1993-1995 you were experiencing heavy ble eding associated with menstruation. ANSWER: Yes.
1,269	13	QUESTION: You were experiencing abdominal pain and you were referred to Colchester county hospital for investigation. ANSWER: Yes, that's right.
1,270	13	QUESTION: And you had a procedure there. Do you remember anything about, again, the physical circumstances o f your admission? ANSWER: Yes. So they have a day unit, there was a day un it there but they took me upstairs onto a closed down ward. There was all beds not made up except for on e and my Mum actually was with me at the time and she said, "Why is she here? This isn't right", and the y was, "Oh, no, no, no, they have miscalculated but w e didn't want you miss out having the procedure", and that was the only explanation we got.
1,271	13	QUESTION: Now there came a point in time at which the fatig ue that you were experiencing was such that you were suspected of having glandular fever? ANSWER: Yes, that's right.
1,272	13	QUESTION: And you were coughing, you had throat problems an d you relate in your statement a summer holiday period in terms of the children's school holidays when you we re very ill and couldn't do anything? ANSWER: Yes. I literally was flat out for six weeks. It 's awful for them really because we couldn't go out an d do the activities that we liked to do. I was just shattered. In fact, I think, because I was working in a school at that time I didn't even go back to scho ol to work for a couple of weeks because the fatigue, it was just ridiculous.
1,273	13	QUESTION: But because of what you'd been told by the GP whe n you went to see him, you put it down to your personal circumstances? ANSWER: Yes.
1,274	13	QUESTION: Lots of young children, it just being an exhausti ng -- ANSWER: Yes.
1,275	13	QUESTION: We then come forwards to 2004 and you were diagno sed with type 2 diabetes? ANSWER: Yes.
1,276	13	QUESTION: By this time can you give us a flavour of the kin d of physical symptoms that you were experiencing? ANSWER: So still the chronic fatigue, which was getting w orse, still lots of sort of gastric-y problems. I had bleeding gums, yes, bleeding -- yes, sorry, bleedin g gums and just that general, I was doing lots of different activities at the school with the childre n, run several groups, and I think it must have just been -- sorry, I'm just getting it in my mind. So I was suffering with severe thrush at the time and a teacher said to me, "You must go to get that sorted out". I'd never experienced it before. So they did a urine test and there was like, "Oh, okay, there's some sugar there", so then they did a needle prick test and the nurse was like, "Oh, yo ur sugar level's on 24". Then they called a doctor in to speak to me but, to be fair, I'd just finished umpiring a cricket match and, you know, he's talkin g away to me and I'm looking at him but, to be fair, it was just like he was going [descriptive noise], nothing was going in. So I was just kind of like, just, you know, and then it was all this kind of, o h, so let's try it with diet. That didn't work. My sugar's kept on progressing. I was put on medicati on and it was at one point my liver enzymes were reall y high, and then I'd got a different GP, same surgery but a different -- because she was absolutely lovel y actually, and she said to me but -- she said it was missed because she said, the diabetes, that's why t he liver's a bit like that, and it just never was real ly looked at. To me, that was then a second missed opportunity. 0
1,277	13	QUESTION: So what you've described in your statement is in around 2004 whilst being tested for diabetes your liver function tests were undertaken which showed t hat your liver enzymes were elevated above normal level s? ANSWER: Yes.
1,278	13	QUESTION: Then you had further liver function tests you thi nk about 2009/2010? ANSWER: Yes.
1,279	13	QUESTION: Again, they showed raised liver enzyme levels but no further investigation or enquiries were undertaken? ANSWER: No, nothing.
1,280	13	QUESTION: That's why you've characterised these as possible missed opportunities? ANSWER: Oh, yeah, I do. I think there's been several mis sed opportunities along the way.
1,281	13	QUESTION: So it was autumn of 2015 when you finally receive d a diagnosis. You'd switched to a different GP and you attended for your annual diabetic blood test in October 2015. What symptoms had you been experiencing? ANSWER: So by that stage I was really, really ill. I'd l ost lots and lots of weight for no reason. I wasn't trying to lose weight. It was just falling off of me. In actual fact I think in my uniform for work I'd g one down about four or five different sizes just sudden ly. 1 Gastric, sick, lack of appetite, fatigue at this ti me was ridiculous. I used to work on the customer service desk. At my break time I'd take my insulin because now it had risen to insulin and more medication and I'd try to grab a quick power nap before I was back seeing to customers, et cetera. But I couldn't cope with it. I was so ill and I said t o my husband, Dean, "I think there's something really seriously wrong with me. I think I'm going to die" .
1,282	13	QUESTION: So the surgery took the blood test and then your GP called you back in and what did the GP tell you? ANSWER: So he said to me that my -- I think it was the GT -- GGT levels.
1,283	13	QUESTION: Glucose tolerance test? ANSWER: No, the GG -- so the one that's to do with your l iver, yes, he said that that had come back over three tim es higher than what it should be, but they'd also call ed me back for a couple of -- I'd had one blood test d one and then they called me back in and they said, "We didn't get it sent out on time. We need to check i t again", so I went to see my GP, lovely man, and we sat down trying to find out why and, you know, you get the questions, "Have you injected drugs". He said I ha ve to ask you this, "Are you an excessive drinker", wh ich I'm not and he just said to me, "I can't understand2 it, with all your symptoms", and it was literally l ike a light bulb went ding and I said to him, "Oh, hang on a minute. I had two blood transfusions before the bloods were screened back the '87 and '91 and I wen t to my GP in Clacton-on-Sea and he told me to go awa y", and he was like, "Oh ..." So I went through the story about, you know, getting the literature through, understanding, bein g turned away, so he tested me that day and it was ab out two or three days later he actually phoned me at ho me and told me I was positive for hepatitis C.
1,284	13	QUESTION: You describe, just going back to that consultatio n you had with him when you had this light bulb moment an d told him about the blood transfusions, you describe in your statement he actually put his head in his hand s. ANSWER: Yes, he did, he did this (indicated) , he was like ...
1,285	13	QUESTION: Then he phoned you, as you said, not long afterwa rds to tell you that he was very sore very but he had t o tell you you had hepatitis C? ANSWER: Yes.
1,286	13	QUESTION: What was your reaction? ANSWER: I just want to add there he did ask me to come an d see him straight away but I wasn't quite ready. I need ed to digest that information. Oh, I was terrible. I literally almost collapsed to the floor. My husb and 3 at that point had been working nights, my family ha d all left home, and I was just hysterical. I was li ke a hysterical little child because every time I shut my eyes there was a coffin. All I could see was a cof fin because I didn't understand hepatitis C, no idea of it. I knew, you know, anything hepatitis could be related to maybe, you know, prostitution, people do n't understand the disease. So then my husband's come in, finding me in a complete mess, and he was -- we were both in a complete mess. I then withdrew. I did not want to speak to anybody and I like talking, as most people know, but I really withdrew so I wouldn't even spea k to my children. I didn't want any interaction with my husband. I wouldn't go out. I did finally go alon g to my GP, which actually was really good because wh en I phoned and said I need to see him and I give my n ame they said "Come straight now", so that was very goo d.
1,287	13	QUESTION: He was honest with you, I think -- ANSWER: He was, yes.
1,288	13	QUESTION: -- that he didn't know very much about hepatitis C? ANSWER: No, he said to me, "I don't know nothing about hepatitis C". He said, however, and he printed several sheets off for me and gave them to me for reference, said to me, "Whatever you do, please don 't 4 go on Google", as we do, and I did have an appointm ent rather quickly. But just going back to my feelings of that withdrawal, that was -- I've never experienced that before. That was absolutely awful and then I felt dirty. I can remember sitting in the bath and scrubbing. I actually drew blood, where I was just -- that's how I'd made -- then I got really angry and I mean furiously angry, and I had to have the blood after the transfusion, I had to have it or I'd have haemorrhaged further and died but it was the GP, th at GP that had that opportunity to give me a simple te st that could have saved ...
1,289	13	QUESTION: All those years of not knowing. ANSWER: Yes.
1,290	13	QUESTION: And of feeling ill and not knowing why and not ha ving treatment? ANSWER: Absolutely. You know, I felt let down. I felt betrayed and it's left me with a huge mistrust of medical hospitals now.
1,291	13	QUESTION: Just going back to the original transfusions, obviously the second one, you described the emergen cy that arose and the circumstances in which you were given it, but did any of the medical professionals on either of those occasions ever give you any advice or 5 information, even if it's after the transfusion, ab out risks of infection? ANSWER: No, not that I can remember.
1,292	13	QUESTION: So your anger's not the being given the transfusi on, your anger is in relation to the infection but in particular, in your personal case, in relation to t he missed opportunities? ANSWER: Yes, definitely. I mean, don't get me wrong, I'm still angry that there was hepatitis C in the blood and I'm, you know, really furious about that but it would only have been seven or eight years if he'd h ave given me that test. I wouldn't have ended up with the amount of a health issues that I've got now that st ole my life.
1,293	13	QUESTION: The GP who finally assisted you in finding out th e diagnosis, I think he referred you speedily to your local hospital and you were seen there quite quickly -- ANSWER: Yes.
1,294	13	QUESTION: -- and you got the results back in relation to confirmation that it was genotype 1A? ANSWER: Yes.
1,295	13	QUESTION: What then happened in terms of you receiving trea tment for the hepatitis C? ANSWER: It's a bit complicated that one because I saw one6 doctor first because they suspected that I had pancreatic cancer and then lymphoma, first of all. They forgot to do my fibroscan and then there was a six-month wait to see the hepatologist and there is no way on this earth I was going to wait six months after I just had that damning news and remembering that the doctor had sent me away, so I kind of very kindly persuaded the secretary at the time to pull me forward slightly by three months. When I got to see him, my fibroscan result, when they did it, then come out, I think it was about 39 .7.
1,296	13	QUESTION: So that scan confirmed you had cirrhosis? ANSWER: Yes. So then it came down to treatment. So by - - with the NICE guidelines if you've got cirrhosis yo u kind of go higher to get treatment first. I'm not going to go into an awful lot of detail but I had a phone call saying, "We are -- you've been -- you can have treatment and you're going to have the AbbVie triple regime", and I was like, "Brilliant, great". She said, "You just have your colonoscopy, just to make sure nothing serious is showing from that and then we'll be ready to go". Fantastic, brilliant. And then I don't know, brain fog, it was so -- I then got phone call saying, "Oh, actually, we're sorry, your funding's been withdrawn. Where we use d 7 to treat eight a month. It's now gone down to two, it's out of the trusts, it's come down above the trusts", and I was just gob-smacked. They might ju st as well have told me I got hep c again. That's how I felt.
1,297	13	QUESTION: You were told you weren't going to get the treatm ent then for the reasons you have just explained. ANSWER: Yes.
1,298	13	QUESTION: Were you told whether you would be getting it at all and, if so, when? ANSWER: I asked. I said, "Well, how much longer am I goi ng to have to wait then", and she said, "Month, six month s, a year ..."
1,299	13	QUESTION: So what did you do? ANSWER: Well, I thought, "I'm not having none of that. I 'm sorry, you know, you gave me this mess. You can ge t it cleared up". So I spoke to somebody very nice from the media who said would I mind if they intervened and had a chat and I was absolutely no and I think it was about week later I got another phone call to say, " Oh, we've got some funding for you now, so you can have your treatment".

Subsets and Splits

No community queries yet

The top public SQL queries from the community will appear here once available.