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1,300 | 13 | QUESTION:
That was through the medium of a local radio stat ion?
ANSWER:
Yes, it was, yes. 8
|
1,301 | 13 | QUESTION:
So you began the treatment, the AbbVie triple the rapy
regime, in September 2016?
ANSWER:
Yes.
|
1,302 | 13 | QUESTION:
That was a six-month course?
ANSWER:
Six months, yes.
|
1,303 | 13 | QUESTION:
So that took you through to March 2017?
ANSWER:
Yes.
|
1,304 | 13 | QUESTION:
What was the outcome in terms of the virus?
ANSWER:
So it took a little bit of a while for the virus to
go. That's why I think I had the extended three
months also because of having the cirrhosis. I did
have Ribavirin six tablets a day for six months, wh ich
I thought was actually going to kill me. I believe
it's because of that drug that I have -- my hair
hasn't grown back and it's two years SVR now, which
means undetected.
I'm sorry, what was your question again?
|
1,305 | 13 | QUESTION:
That's all right. The outcome of the treatment a fter
six months was that the hepatitis C virus was now
undetectable?
ANSWER:
Undetected, yes.
|
1,306 | 13 | QUESTION:
You were talking about the side effects.
ANSWER:
Oh it was -- I had terrible -- I felt worse, I fe el
worse now and especially when I was on treatment th an
when I actually had the virus live. The pains, 9
I can't explain to you the pains. People who have
suffered will know what I mean. It's like pain in
your bones, the aches, the -- they just -- I would be
sleeping for 16 or 17 hours a day. I just could no t
get out of bed. I've never experienced anything an d
I kept saying to my hepatologist I've got continued
pains and I was then under a bowel specialist. I h ad
been under a cough -- the respiratory for this chro nic
cough that I had and, finally -- sorry, I'm going t o
have to step back a bit.
In I think it was February 2016 I think it was
that -- it might be '17 but it was '16, so the pain s
were so, so, so bad and I was coughing up a little bit
of blood that I phoned 111 and eventually an ambula nce
came. They said no, because my blood pressure was
really elevated, my sugar level had gone up, I was
taken into hospital and it was found there that I'd
got acid reflux and I'd got a disease of my
oesophagus, but I needed to have my gall bladder
removed because there was lots and lots and lots of
stones and that's what the pain was.
I said to the lady nurse, who was dosing me with
morphine because the pain was that bad, that I had
hepatitis C. I need to -- the one thing I needed t o
let them know that. Looking on my records now, it' s 0
the records that I've been able to get, it's actual ly
got -- I've got a printed that when I was admitted in
it said I was HIV positive.
So I'd actually had -- I'd asked to be tested
for HIV and the letter come back saying I was
negative, so to have had that letter saying negativ e
and then to look at a hospital record which was typ ed,
it wasn't even handwritten, to say I was HIV positi ve
was just -- whoa. So that then was investigated by my
GP and she was satisfied that the bloods were fine and
that was just an error on the hospital's point but
that's a big error.
|
1,307 | 13 | QUESTION:
You have had in terms of other physical and medic al
complications, you have referred to the removal of
your -- or to your problems with your gall bladder and
you eventually had your gall bladder removed?
ANSWER:
Yes, I did.
|
1,308 | 13 | QUESTION:
You've had bleeding in your eyes?
ANSWER:
(The witness nodded)
|
1,309 | 13 | QUESTION:
Do you know, have you ever been told whether ther e are
any connections between the hepatitis C or the
treatment for hepatitis C and any of these other
matters?
ANSWER:
No.
|
1,310 | 13 | QUESTION:
You don't know?
1
ANSWER:
No, nobody's ever said. I don't know and nobody' s
ever said. My eyesight's predominantly got worse.
I'm still under the hospital. I had to have
injections in my eye, eyeball, and yeah this one's
starting to go now, so I don't know if there's
a connection there. But I had hep c for 29 years.
|
1,311 | 13 | QUESTION:
You've said in your statement that we one of the
difficulties associated with having all these other
medical complications, whether or not they are rela ted
to the hepatitis C, is you have this distrust now o f
the medical profession --
ANSWER:
Absolutely.
|
1,312 | 13 | QUESTION:
-- and yet you are constantly having to put yours elf
in the hands of the medical profession?
ANSWER:
When I had my gall bladder out, I had to sign
a document that said that I could possibly bleed to
death on the operating table because of the cirrhos is.
I needed to stay in hospital overnight where usuall y
it's just a day case, and I kind of -- it was just
there in the back of my mind. It's a really, reall y
silly thought but I just thought do you know, it wo uld
just be so easy to quieten me down, just to give me
a little bit more anaesthetic and that was going wh at
was going through my mind. They could get rid of o ne
more. It would have been simple because I'm 2
overweight. You have a risk when you are having an
operation anyway, so when I actually woke up
afterwards I was rather shocked. I was still here!
|
1,313 | 13 | QUESTION:
You have said in your statement that the infectio n and
I think also the fact that it was undiagnosed for s o
long has had profound effects on your mental
wellbeing?
ANSWER:
Oh absolutely. Oh yeah, to be fair, I've been an
absolute monster at times, literally. I mean, how my
husband puts up with me I don't know because someti mes
you, and I'm sure others can relate to this, someti mes
you wake up and I feel like I'm in a black cloud an d
there's nothing that can bring me out of that. I j ust
have to be alone, and my husband's learned now just
to -- it's hard for him watching me suffer that way
and then just crying for no reason, and then the mo st
simplest of things, you're flaring your temper, you 're
angry, so I don't think I've ever got over that
initial diagnosis and then I get angry thinking abo ut
the doctor that sent me away. I just think all the m
emotions. It just gets a bit too much sometimes.
So then with your -- when we go back to talking
about brain fog, you know, I could be saying, I mig ht
be wanting to say hello to you and this is Caz, the n
I will look at Caz and I can't think of her name. 3
I know it's there and then you get frustrated becau se
you can't remember, so then with my husband I'll be ,
"You know, you know", and it's really frustrating.
I mean, don't get me wrong, it's got easier but
I still have moments when that cloud is there and i t
just goes. It's the most awful thing I've ever
experienced.
|
1,314 | 13 | QUESTION:
You have had and you still have I think terrible
anxiety.
ANSWER:
I do. Yes, there are times when we're at home an d my
husband will go, "We've been in for a week, doing h ome
shopping. We need to get out. We need to go out",
and I'm like, "No, no, we don't. No, no, I'm too
busy. No, no", it's because I don't want to see
people. I don't want to -- sometimes, I think I st ill
sometimes get that little bit where I need to go ba ck
into myself to think and reflect and -- because it' s
only still been, what, three and a half years for m e
and I'm like a sponge trying to absorb all this
knowledge and understanding and it's not just what
happened to me with transfusions, then there were t he
haemophiliacs that I'd kind of heard of but didn't
understand, and then suddenly there's a whole new l ot
of people and then you start thinking my goodness,
this is terrible. How's this been allowed to happe n 4
for 40 years?
|
1,315 | 13 | QUESTION:
You've, as well the anxiety, you have been
experiencing depression.
ANSWER:
Yes.
|
1,316 | 13 | QUESTION:
You're not currently taking antidepressants.
ANSWER:
No.
|
1,317 | 13 | QUESTION:
But you've had dark days.
ANSWER:
Yes.
|
1,318 | 13 | QUESTION:
Particularly after the initial diagnosis.
ANSWER:
Yes.
|
1,319 | 13 | QUESTION:
And I think to the extent that you had on occasio ns
suicidal thoughts?
ANSWER:
Yes, very, yes. At the beginning there was no re ason
for me to get out of bed because I was useless.
I lost my job. I'd lost 30 years. What good was
I anymore? And that is really difficult to deal wi th,
to feel that you're worthless and that you don't me an
nothing to anyone anymore and I don't mean my famil y
but in terms of your job.
You know, my work was good with me, really,
really good, I have to say, and I was -- I was quit e
happily there, you know, I did the farm to fork wit h
the children. I did some in-house magazine work,
reporting, et cetera, and that's gone. That will
never come back because I'm just so flipping tired all
5
the time. I couldn't commit from one day to the ne xt.
|
1,320 | 13 | QUESTION:
Although the virus has cleared -- do you need a b reak
Michelle at all?
ANSWER:
No, no, I'm fine, thank you.
|
1,321 | 13 | QUESTION:
Although the virus is clear you still have to go for
scans every six months --
ANSWER:
Every six months, yes.
|
1,322 | 13 | QUESTION:
-- to see whether there is further damage to your
liver?
ANSWER:
Yes.
|
1,323 | 13 | QUESTION:
How do those appointments make you feel?
ANSWER:
Oh, I hate it. I'm a bag of nerves two or three days
before. I'm churning up inside thinking, "My
goodness, are they going to find something now?"
We've heard about Sally Vickers, what happened to o ur
dear Sally. And that's always at the back of your
mind, is there? And our hospital, where I'm under,
you have your scan, you might wait three or four we eks
for a letter and then you see your hepatologist, if
you're lucky, and then you get sent off for bloods.
So there's no -- not like at King's, where you
have your scan in the morning, your bloods, and the n
you see the person in the afternoon. That's all do ne
and dusted. So this can be over a space of a month
from having a scan to seeing a hepatologist and hav ing 6
to have -- then before you know it, you're having
another one and it's just like -- and it's always
there at the back of your mind because, you know,
you're trying to press the sonographer or
radiographer, or whatever they're called, to say,
"Well, can you see anything?" "Oh, we'll send it o ur
specialist and then it will be sent off to you" and
then every time the phone rings, you're like, "Oh, is
that the hospital? Have they seen ..." So, yeah,
it's horrible and you have that twice a year and I' m
going to have that until I've popped my clogs.
|
1,324 | 13 | QUESTION:
What's the impact been on your family life and on your
family?
ANSWER:
Well, my family have all grown up and moved away and
I think it's been pretty hard on them because I thi nk
it took me a long time to realise that they were
affected victims. It took me a long time to
understand that actually it's probably been a lot
worse for them, although I've had the physical pain
and it was all "me, me, I'm not well, I'm tired, me ,
me, me" sort of thing. But when I sort of stopped and
looked and I think just being and meeting all the
lovely people and looking at the -- listening to th e
different people that are affected, it suddenly hit
me, oh my goodness, my husband and my family are 7
affected victims.
It just didn't -- you know, it just didn't click
and I think it's been hard, it's been very hard for
them.
|
1,325 | 13 | QUESTION:
They had to be tested, I think?
ANSWER:
Yes, my husband -- yes, they had to be tested and
thankfully they all come back clear. So that was
a blessing in disguise.
|
1,326 | 13 | QUESTION:
Your daughters were worried because they might ha ve
used a razor or a toothbrush?
ANSWER:
Yes, definitely. My youngest daughter when she w as
like, "Oh Mum, we used to use your razor and you ne ver
knew" and then you're thinking "oh my goodness" and
toothbrushes and all -- you know, you don't know wh at
your kids are getting up to behind your back.
So, yeah, that was a really, really worrying
time and it wasn't only that, it's that there's
grandchildren there as well. So that was my fear t hat
if I had sadly passed it on, would it have gone on
maybe into grandchildren. But thankfully they was all
clear, as is my husband.
|
1,327 | 13 | QUESTION:
And it's had an effect on your relationship with your
husband?
ANSWER:
Yes.
|
1,328 | 13 | QUESTION:
Because you've said in your statement some days y ou 8
are bright and bubbly and others you don't seem to be
able to get out of bed.
ANSWER:
No, that's right and I just don't want to interac t.
I just don't want to talk, which is not like me. B ut
when you wake up in that feeling of that blackness
around you -- I once described it as like a coil an d
you go down and down and down and down and you kind of
get wedged down there and you're trying to get back up
and it's really, really difficult -- really difficu lt.
|
1,329 | 13 | QUESTION:
You had a particular concern about going to the
dentist. Tell us about that.
ANSWER:
So during -- I'd always -- well, as my GP had onc e
said to me because I had bleeding gums that I'd got
gingivitis and it was -- I can't remember if it was
during the treatment or just before the treatment,
I was pulling my teeth out. I could literally pull --
I did not need no pliers, I just pulled them out.
I could just literally be sitting there and I think
"oh" and my husband's "What you doing?" I go, "Oh,
I've just pulled a tooth out" and he'd be like, "Oh ,
my God". Literally, I think it was about eight tee th.
No, I wouldn't go to the dentist when I knew
because I was so worried in case I could pass it on to
somebody else just in case the instruments haven't
been sterilised properly.
9
|
1,330 | 13 | QUESTION:
The impact upon the family finances. You describ ed
how you have had to give up work.
ANSWER:
Yes.
|
1,331 | 13 | QUESTION:
You ended up being medically retired --
ANSWER:
Yes.
|
1,332 | 13 | QUESTION:
-- in 2016. What kind of work had you done prior to
that?
ANSWER:
Okay. So I spent about eight or nine years as
a learning support assistant in a school and I work ed
with children with ADHD, that kind of thing. I spe nt
five years in a solicitor's office as a PA and then
when we moved to Norfolk, because in between I had
breaks in between because I was so exhausted it wou ld
be like I'd had to take a year-and-a-half out and t hen
I'd think, "No, I want to work", you know, and then do
it for so long and I'd think, "I can't do it". And
then the last one was when I was employed by Tesco' s
and, like I say, they was very good to me.
|
1,333 | 13 | QUESTION:
Yes. You've said in your statement that they kep t you
on the payroll for a number of months after you wer e
unable to work but it couldn't carry on indefinitel y.
ANSWER:
Yes.
|
1,334 | 13 | QUESTION:
Hence medical retirement in June 2016?
ANSWER:
Yes.
|
1,335 | 13 | QUESTION:
Your husband's also had to stop work in order to look 0
after you.
ANSWER:
He did because the state of me at that time I cou ldn't
be trusted with a kettle, with the simple things.
I've got very bad balance issues where I can -- it' s
like I'm just going to -- I don't know. I don't kn ow
if it's to do with the hep c but I get a bit dizzy.
And of course there's that worry when I went
through those times of thinking it will be easier j ust
to go to sleep and never wake up again, and he stop ped
work to care for me. So of course when I was on my
medication for six months he had to deal with that
because I would never have remembered to have taken
them tablets or, of my own, I might have just thoug ht
"blow it" and took them all.
|
1,336 | 13 | QUESTION:
You've had to apply to the Department of Work and
Pensions for benefits?
ANSWER:
(The witness nodded)
|
1,337 | 13 | QUESTION:
What has been your experience of that process?
ANSWER:
Not very good, actually. Nobody likes to go with
a begging bowl pleading, having to explain when you
don't even know what you are trying to explain beca use
you still don't really understand the full effects of
it yourself.
I think it was in around about 15 months I had
three DWP appointments. When I was called for the 1
middle one, I actually got rather cross about that and
I phoned up and asked them what did they know about
hepatitis C and contaminated blood. And, you know,
the guy was a bit off with me and I asked to speak to
his line manager and he said, "Oh, he's in a meetin g".
I said, "Oh, that's fine. I'll carry on chatting t o
you. That's not a problem". And then I kind of
mentioned that I was part of a working party group for
the DWP, said we'll use this as a two-way exercise for
us both because I can then report back to the group ,
the support group, if there's any problems. And
I mentioned a couple of names, policy makers that
attended, and suddenly the manager was there,
thankfully.
We had a conversation and I said to him, you
know, I'm not disputing the fact that I have to com e
along to have an interview, I'm not disputing that,
but when I speak to somebody, I want to be speaking to
somebody who understands what we've been through an d
what we're going through and -- anyway, he said, "I 'll
ring you back, I'll ring you back". Of course he
didn't.
I went along to the appointment and waited about
half-an-hour. As soon as I walked in the doors I w as
in tears, I was shaking, I felt I was going to star t 2
hyperventilating. I had to go up and say, "Is it
going to be much longer because I can't cope". It' s
embarrassing because it's all people all around,
sitting there looking and poor Dean's, like,
"Dear ..." It's humiliating. I felt humiliated. You
know, it's not my fault. I'm here.
The guy then came round to me from the reception
and said, "Oh, you won't be seeing the original per son
now. You'll be seeing somebody else". And thankfu lly
she was the most loveliest lady ever and she
understood. She was very kind, she was very patien t,
and, yeah, she was very nice.
But it's those pre-feelings that you don't need.
You know, you're sitting there and you think I'm go ing
to throw up in a minute, I can't cope, I just can't
cope. I suppose I got as near to a break-down
possibly as you-- I don't know what you go through but
I was in a really, really bad place, really bad. B ut
we got through that, that was fine.
Then I applied for PIP and that was relatively
okay. But, you know, at the end of the day they've
got our records from -- well, I was Skipton, now
EIBSS. If you're on a stage 2, I can't understand --
or a stage 1 payment depending how poorly you are - -
why you necessarily have to keep going through thes e
3
procedures, these upsetting times. You know, if I was
a vulnerable person that could possibly tip me over
the edge where you've had enough of it. It's the
form-filling. It's the reliving everything. You
know, it was really -- it needs to stop.
|
1,338 | 13 | QUESTION:
Have you ever been offered any form of counsellin g or
psychological support?
ANSWER:
There is a lady at our GP surgery that I can go a nd
talk to but there's a long wait. I was never offer ed
it at the hospital when I was first diagnosed. The re
is a letter that says "I have counselled Michelle a nd
expressed that her children and husband should be
tested". But, no, apart from what's at the local G P,
no, nothing.
|
1,339 | 13 | QUESTION:
And then you just mentioned the Skipton Fund?
ANSWER:
(The witness nodded)
|
1,340 | 13 | QUESTION:
You weren't, I think, ever given any information by
anybody about The Skipton Fund. You found it yours elf
through the internet?
ANSWER:
Just through searching. Yes, I didn't have a clu e.
I wasn't told about it at the hospital, doctors, we ll,
I wouldn't expect him to know because he didn't rea lly
understand it. But no, not at the beginning.
|
1,341 | 13 | QUESTION:
When you did find out about it and you did apply, what
was the process of seeking financial assistance fro m 4
The Skipton Fund like?
ANSWER:
So they need -- what's their evidence? It's got to be
more likely probable that you've got hepatitis C
through a blood transfusion and you have to prove i t.
You have to show proof. So for me that was really
difficult because my maternity records had been
destroyed as they're only kept for 25 years.
I couldn't find anything else. I'd never kept
anything from the pregnancies because they take all
their records back.
And then I had an idea to ring the GP's surgery
and speak to the medical secretary and I said, "Hav e
you got anything? Is there anything there?" So sh e
said, "What I'll do is I'll print out" -- I think i t's
a primary summary sheet. I think it's just literal ly
where you go into hospital, that's -- yeah, and whe n
I went and collected it, it was there. It was writ ten
there that in '87, I'd had 4 units and after the tw ins
the 2 units, plus I had my little blood card as wel l
which I'd managed to keep.
|
1,342 | 13 | QUESTION:
But without those bits of documentation, you thin k you
would, in all likelihood, have had your application
rejected?
ANSWER:
Oh, absolutely. Yeah, definitely.
|
1,343 | 13 | QUESTION:
The other concern I think you had about The Skipt on 5
Fund was that none of the payments that you receive d
were backdated; is that right?
ANSWER:
No, that's right. You know, at the end of the da y,
whenever they started the schemes up, you know,
I don't see why that those monies shouldn't have be en
backdated to when it first started because, you kno w,
being turned away several times and misdiagnosed,
that's -- again, it's not our fault. So, yeah, I
wasn't very happy with that to be fair. I didn't
think that was very fair.
|
1,344 | 13 | QUESTION:
I think in terms of support you've derived your
support on an ongoing basis from your husband and y our
family?
ANSWER:
Yes.
|
1,345 | 13 | QUESTION:
And then also from the campaigning work that you' ve
become involved with?
ANSWER:
Yes. It was very -- I was adamant that when I wa s
very, very angry that I was going to try and use th at
anger for something, rather than be negative to tur n
it into something positive, and I kind of thought i f
I can find one other person like me -- because if
that's happened to me, who's just an ordinary, you
know, family, wife, et cetera, how many more of mes
could be walking out there and not knowing? You kn ow ,
they may have had operations in the past, not even 6
realised they'd had blood transfusions.
So that was my most worrying thing and I was
very lucky with BBC Radio Norfolk, I'd written to o ne
of -- there's a lovely presenter there and he phone d
me and we had a long chat and he invited me in and, to
be fair, it's kind of started from then and it's
escalated. Then the local newspaper got involved a nd
they've actually supported me and my journey throug h
every step of the way, and they've been actually
amazing, you know -- really amazing.
|
1,346 | 13 | QUESTION:
Michelle, those were the questions I had for you but
is there anything else you would like to add?
ANSWER:
Yes, if you don't mind thank you, Jenni.
Our community, I feel, has been divided by the
Government. Well, not anymore. We are united as o ne
and together we stand tall. We are louder but, mos t
of all, we are stronger and we are not going away.
The haemophiliacs and the whole bloods must work
in unison as we are not only representing ourselves
but, sadly, for those who are no longer with us. A lso
plus the families of victims who have been abused b y
the old schemes and the confusion that EIBSS (the
English Infected Blood Support Scheme) continue to
cause.
Test, test, test. People must be tested for
7
hepatitis C. It is a killer. How many more like m e
have died without knowing, where families haven't h ad
that chance to understand? The Government must --
must -- test people. We are not going to get the
elimination of hepatitis C if people are not tested .
Just to finish off, I would actually really
personally like to thank the people that have come to
support me today but also for the media for allowin g
us, to give us a platform, to help raise that
awareness in trying to find other victims. To
Sir Brian and the Inquiry team for your trust and
support and to the Hepatitis C Trust for just being
there always.
And this is where I might get a bit tearful.
This is for my incredible husband, Dean, who has
really been my rock during this horrific
roller-coaster of a journey. I couldn't do this
without you, darling. I love you. Thank you.
|
1,347 | 14 | QUESTION:
Q.ANSWER:
A. |
1,348 | 14 | QUESTION:
Mr B, you have beta thalassaemia?
ANSWER:
Yes.
|
1,349 | 14 | QUESTION:
Please can you tell us what that is.
ANSWER:
It's a genetic blood disorder, chronic anaemia. My
body doesn't produce red blood cells and, yeah, it' s
not a good thing. Without red cells, we can't
breathe, we can't function and we would die.
So the treatment for that will be -- is regular
blood transfusions.
|
1,350 | 14 | QUESTION:
How frequently do you have those transfusions?
ANSWER:
So currently, at this age, it's every four weeks
I have three units of blood. As a child, you didn' t
need as much blood and it might be two units every six
weeks and as you're getting older, they step it up.
|
1,351 | 14 | QUESTION:
Are there any side effects of having regular
transfusions?
ANSWER:
Yes, absolutely. So with the constant infusion o f
blood, what happens is iron starts to build up in y our
body, and the iron will build up in your vital orga ns,
mainly your heart, your pancreas, your thyroid and
various different parts of the body, and if it gets
too much those organs will fail, so we need
a treatment for that.
|
1,352 | 14 | QUESTION:
How is that treatment administered?
ANSWER:
So the treatment has evolved over the years. As
a child, from about the age of five it was an
injection in the backside administered by the nurse
and then my parents.
Now, it evolved to a more effective treatment
but a much harder regime where you had to inject pu t
a butterfly into your stomach, a butterfly needle w ith
a little pump. We used to do it in the evenings an d
it had to stay for ten hours, slowly pumping in the
drug.
Now, at first, my parents used to do it but
then, from about the age of probably 11/12, I was
doing that myself.
|
1,353 | 14 | QUESTION:
And now how is it dealt with?
ANSWER:
Now it's evolved into tablets. There's different
forms of tablets on the market but some patients ar e
not tolerant to those tablets and still have to go via
the old regime of long injections.
|
1,354 | 14 | QUESTION:
You were having, you still have and you were havi ng
very regular blood transfusions. Were you ever war ned
of any risks involved in those transfusions apart f rom
the iron issue?
ANSWER:
No, it was only the iron.
|
1,355 | 14 | QUESTION:
You contracted hepatitis C from one of those
transfusions.
ANSWER:
Yes.
|
1,356 | 14 | QUESTION:
But understandably you don't know which transfusi on
infected you.
ANSWER:
No.
|
1,357 | 14 | QUESTION:
You were told that you'd contracted hepatitis C i n
1988 or 1989, somewhere around that time?
ANSWER:
That's what we believe, yes.
|
1,358 | 14 | QUESTION:
How were you told?
ANSWER:
I was called in to my -- my consultant called my
parents -- well, me, my parents went to the
haematology department and our consultant just came
out with it, "You've got hep c".
Now, our consultant had looked after us since we
were little kids, babies, and she never put sugar
coating on anything. She just told us the way it w as.
We -- my parents had no idea what it was but, as
parents who or immigrants I guess, their understand ing
is limited and they started to fear the worst, you' ve
got a virus, et cetera, et cetera, and that was it
really. The consultant turned around and said to u s
don't worry are we're going to beat this and that's
how -- that was the whole content of the meeting.
|
1,359 | 14 | QUESTION:
You were in your early 20s at that point.
ANSWER:
Yeah, yeah.
|
1,360 | 14 | QUESTION:
You have said that your parents were in pieces.
ANSWER:
Oh absolutely, because having to, one, accept the y've
got two kids with thalassaemia major, beta major, a nd
then to be told this, it really hit them hard, and
they were aware of AIDS at the time and they though t
it was kind of the same thing, you know. But, yeah ,
they reacted badly.
|
1,361 | 14 | QUESTION:
You said there were no leaflets, no handouts, the re
really was no available information.
ANSWER:
No.
|
1,362 | 14 | QUESTION:
How did you react to the news?
ANSWER:
I thought, okay, here we go, another problem to d eal
with but then it manifested in my mind a lot more a nd
it started to make me think why am I bothering with ,
at the time, the painful treatment, why bother with
all of that if you've now got this virus that's
attacking your liver. And I wasn't great at biolog y
but I know you need a liver. So, yeah, it started to
manifest itself as very negative thoughts.
|
1,363 | 14 | QUESTION:
At that stage you told your partner that you coul dn't
carry on taking your iron chelation therapy for
thalassaemia because, "What's the point? Even if I 'm
treating the thalassaemia, the hepatitis C is going to
kill me".
ANSWER:
That's exactly what I said to her. It just felt like
all of the suffering from the years before, this wa s
just -- it just felt too big for me to overcome at the
time, you know, I was young and I told my girlfrien d
exactly how you put it. There's no point.
|
1,364 | 14 | QUESTION:
You've said in your statement that all the
thalassaemia patients were told at about the same
time?
ANSWER:
Yeah. All of those who tested positive for HCV a nd
HIV at the time, it was like one in one out. You
know, there was a special clinic that they held, th e
one I went to, and we were just told.
|
1,365 | 14 | QUESTION:
Were you aware that you were being tested?
ANSWER:
No. I mean, I have every month -- before having
blood, you have to have a cross-match and multiple
other blood tests. So, no, it was just either anot her
tick in the box or write off forms but we never use d
to see the forms back then.
|
1,366 | 14 | QUESTION:
When you go in for transfusions you often see the same
people, don't you?
ANSWER:
Absolutely.
|
1,367 | 14 | QUESTION:
You say there's a thalassaemia community?
ANSWER:
Yes.
|
1,368 | 14 | QUESTION:
And that going in for blood used to be a bit of
a social event.
ANSWER:
Absolutely.
|
1,369 | 14 | QUESTION:
Especially when you had to stay in overnight?
ANSWER:
Yeah, back in the day, it was -- for us that work ed or
who couldn't come during the day we'd stay overnigh t,
normally on a Friday night, and yeah it was a party
atmosphere. We'd take crisps and food and our litt le
ghetto blasters, you know. It was great. But we w ere
all friends, kind of we're called like blood brothe rs
and sisters because we're linked by this blood
disorder and we started, you know, that's when you
started to hear, like, "Psst, did you get any
results", or, you know, and that's how it started, you
know, people talking to each other, you know.
|
1,370 | 14 | QUESTION:
But within that community you said that people di dn't
really say whether they were infected or not.
ANSWER:
No. There were some people that, you know, it's only
like now 30 years later that you're hearing, "Oh, d id
you know ..." People were very, very secretive abou t
it. I only ever openly talked about it with one ot her
patient.
|
1,371 | 14 | QUESTION:
You called the virus something particular?
ANSWER:
Yeah, we -- so when we were talking we would refe r to
the virus as the plague, yeah. That's what it felt
like to us, something that was destroying us and we
would, you know, we'd get our plague updates from o ne
another and so on and so forth.
|
1,372 | 14 | QUESTION:
Why do you think that within the thalassaemia
community people weren't saying that they were
infected? What was it?
ANSWER:
Well, it was, in its simplest terms, it was a vir us
transmitted via blood which immediately kind of peo ple
start looking at you and stigmatising you and then
thinking, well, is it like HIV? Are you -- you kno w,
there was a lot of stuff on the news about HIV and all
that. So we felt that we were contaminated or
infected by blood, so we didn't want to kind of tal k
about it or put it out there because as you go thro ugh
the statement you'll see later on there was stigma
from medical professionals.
|
1,373 | 14 | QUESTION:
You describe it as:
"All I knew about it back then was AIDS, but
then as time progressed and there were a few clinic s
where we found out they would treat hepatitis C [yo u]
started to see a few people that were attending tho se
clinics with [you] and it was a nod. Many chose to be
secretive about it because of the stigma associated
with being infected."
ANSWER:
That's right.
|
1,374 | 14 | QUESTION:
In about 1990, you started treatment for the
hepatitis C.
ANSWER:
Yes.
|
1,375 | 14 | QUESTION:
That was interferon?
ANSWER:
Yes, just interferon.
|
1,376 | 14 | QUESTION:
You became even more depressed at that point?
ANSWER:
I think one would say that's when the real depres sion
started, yes. So it was just with all of the other
side effects that I think we all know about, the
fevers, the insomnia, the inability to sleep, came
a depression and it wasn't good for me in the sense
that I was taking it out on my treatment of the
thalassaemia. So, yes, around that time is where
I started to feel generally low and I just felt lik e,
you know, I kept saying to myself, my girlfriend,
"What's the point, what's the point", you know.
So, yeah, we went through the treatment.
|
1,377 | 14 | QUESTION:
You thought it would kill you, was what you were
thinking?
ANSWER:
Yeah, it was hard on the body, even worse on the mind.
That's the thing, because the physical symptoms com e
and go, you know, but it's I guess the mental impac t
it had on me that, yeah, it was -- I thought it was
going to kill me or I was going to kill me, yeah.
|
1,378 | 14 | QUESTION:
When you started treatment you will still working .
ANSWER:
Yes.
|
1,379 | 14 | QUESTION:
What were you doing?0
ANSWER:
I was a computer engineer, qualified Olivetti
engineer, and also I was studying C programming and
I was also had the ability to do assembly language
programming at the time, which --
|
1,380 | 14 | QUESTION:
During the treatment you stopped?
ANSWER:
Yeah, I couldn't. The physical toll and the ment al,
you know -- my capacity to work was gone completely .
|
1,381 | 14 | QUESTION:
After six months of the treatment, you hadn't
responded so the treatment was stopped.
ANSWER:
That's correct, yeah.
|
1,382 | 14 | QUESTION:
But a few years later you were treated again, thi s
time with peginterferon and ribavirin?
ANSWER:
Yes.
|
1,383 | 14 | QUESTION:
What can you recall how you felt during that seco nd
round of treatment?
ANSWER:
What I would say it was worse, much worse than th e
first round. In terms of physical impact, you know ,
pretty similar to the first round but the mental
impact, you know, there were some very dark thought s
going through my mind, dark, and I -- and I went
through a phase of just closing people out rather t han
having to face anyone, just closed the doors on
everyone and I would be in my own little world with my
thoughts, yeah.
|
1,384 | 14 | QUESTION:
You've said you started worrying about things you 'd 1
never worry about before?
ANSWER:
Yes.
|
1,385 | 14 | QUESTION:
While you were on treatment you had no positive
thinking?
ANSWER:
No.
|
1,386 | 14 | QUESTION:
You kept thinking that you were going to beat the
thalassaemia but that you were going to die of live r
failure?
ANSWER:
Yes, that's exactly how I felt and also it's this
irrational worrying about everything, a kind of
paranoia, anxiety, you know.
I would, as I think it's on my statement,
I would get in my car and I'd start panicking,
thinking what if I crash, what if something happens to
me on the way? Just completely irrational thoughts ,
you know. I could find something to worry about on
anything, on any event, you know.
|
1,387 | 14 | QUESTION:
That second round of treatment also failed?
ANSWER:
Yes, that failed.
|
1,388 | 14 | QUESTION:
And in 2002 you had a third round of treatment.
ANSWER:
That's correct.
|
1,389 | 14 | QUESTION:
This time again with ribavirin and interferon.
ANSWER:
Yes.
|
1,390 | 14 | QUESTION:
This time you suffered with a loss of appetite, t he
fevers again -- 2
ANSWER:
Yes.
|
1,391 | 14 | QUESTION:
-- and your lymph glands became swollen --
ANSWER:
Yes.
|
1,392 | 14 | QUESTION:
-- and you became very emotional?
ANSWER:
Yes, very emotional. I -- it's also I think the first
time I noticed that I've lost my sharp responses to
questions and my wit and all those wonderful things
that I was proud of as a younger man. Things were
slowing down up here in the head because it was
a brutal 18 months of treatment, you know. There's
a picture of me, you don't have it, but I was at
a party, a thalassaemia event, and I look back at t hat
picture now and I just see a skeleton, a skeletal, you
know. It's frightening.
|
1,393 | 14 | QUESTION:
You've described that again you suffered from ver y
severe anxiety.
ANSWER:
Yes.
|
1,394 | 14 | QUESTION:
You felt completely sad and empty inside?
ANSWER:
Yes.
|
1,395 | 14 | QUESTION:
You started worrying about how you would get anyw here.
If you were travelling on a train you would be worr ied
that the train was crashing. What if you got robbe d
or mugged?
ANSWER:
Yes, I would worry about everything.
|
1,396 | 14 | QUESTION:
But the hardest thing, I think, in this stage of
3
treatment was the insomnia?
ANSWER:
Yes.
|
1,397 | 14 | QUESTION:
What can you tell us about that?
ANSWER:
I was working at the time and what I had to do in
preparation for this treatment was I downgraded job s.
I found the job that I could do, so I worked in a s hop
selling mobile phones, and I would go -- I would
actually get home, I was so tired, I would eat, go to
bed, I would not be able to sleep but it was the
thoughts and the fears and that darkness in my head
again that just kept going and the worry, just rand om
things to worry about, and I really -- I'd be lucky if
I got, say, two hours, maybe three at best, worth o f
sleep before having to get back to work.
|
1,398 | 14 | QUESTION:
That meant that when you went back to work the ne xt
day ...?
ANSWER:
It meant I weren't in great shape. I was very ti red.
The treatment was harsh enough, the physical effect s
of the treatment. Luckily at the time my manager i n
the store was an old friend so he would put me on b ack
office duties. When I used to say to him, "It's a bad
day for me today", he put me in the back to just do --
so I wouldn't have to deal with the public and be o n
my feet all day, but it was hard focusing, you know ,
doing the simple tasks I struggled.4
|
1,399 | 14 | QUESTION:
You underwent that treatment for about 18 months?
ANSWER:
Yes.
|
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