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|---|---|---|
900 | 9 | QUESTION:
I think you put together the fact you were treate d at
Oxford, at this particular haemophilia centre by th e
these particular consultants, that you were young - -
ANSWER:
Yes.
|
901 | 9 | QUESTION:
-- so the chances of you having been exposed to
anything else were very small?
ANSWER:
Yes.
|
902 | 9 | QUESTION:
And that you received in this critical period in the
early 1980s a very large amount of Factor IX
concentrates?
ANSWER:
Yes.
|
903 | 9 | QUESTION:
And your belief that you've set out in your state ment
is you might have been used as a guinea pig to test
the effectiveness of the developing processes of he at
treatment.
ANSWER:
Exactly that.
|
904 | 9 | QUESTION:
It's my understanding, Matt, that it's important to
you to try and find out if that is the case or not.
ANSWER:
Yes, of course. I'd like the people or person, i f
that is the case, to be held accountable for what
they've put me and more importantly my family throu gh.
|
905 | 9 | QUESTION:
You have not pulled the punches in your statement ,
Matt. You have said you think your parents were li ed
to.
ANSWER:
I can tell you now, hand on my heart, my parents would
not have given me that medication if they knew the
risks. They enquired about taking me to Wales to g et
a different sort of tr... |
906 | 9 | QUESTION:
There came a point in time in which your parents were
told that you had been infected with hepatitis C.
ANSWER:
Yes.
|
907 | 9 | QUESTION:
If we could have on screen, please, Paul, 1057005 .
We can see this is a letter from the Oxford
Haemophilia Centre dated 18 June 1990 to a haematol ogy
consultant, a Dr Miller, in Milton Keynes and we'll
see from the last sentence of that, if you could ju st
highlight that, please, Paul, "we found him ...... |
908 | 9 | QUESTION:
Were you ever given or were they ever given any
explanation as to why there was a significant delay
between the testing and the knowledge that doctors had
about your infection and your parents being told of
your condition?
ANSWER:
No.
|
909 | 9 | QUESTION:
Do you know whether your parents were even asked to
consent to you being tested for hepatitis C?
ANSWER:
I don't know. I don't believe so.
|
910 | 9 | QUESTION:
In the documents you've seen -- I know you have a sked
Oxford Haemophilia Centre to give you what they
have --
ANSWER:
Yes.
|
911 | 9 | QUESTION:
-- and what we've got, which isn't very much, is all
you've been given, as I understand it?
ANSWER:
Correct.
|
912 | 9 | QUESTION:
Is there anything in the material that you've bee n
given which suggests that they were ever asked to g ive
that consent?
ANSWER:
No. I would just like to add it took four reques ts to
get this information and I only got that informatio n
which is missing documents when Ben, my legal chap,
intervened.
|
913 | 9 | QUESTION:
Between September '89 when it looks as though the
sample was taken for testing and January 1992,
27 January 1992 is the date your statement gives wh en 0
your parents were finally told you had been infecte d
with hepatitis C, would there have been a number of
opportunities in that period when your parents... |
914 | 9 | QUESTION:
How does that delay in your parents being told ab out
the infection make you feel?
ANSWER:
Angry, upset, more so for my parents. They have
a massive sense of guilt on them.
|
915 | 9 | QUESTION:
You have said in your statement that that delay i n
your parents being told causes you an enormous amou nt
of anger and you've made two observations. One is
potentially you weren't being treated properly for the
hepatitis?
ANSWER:
Yeah.
|
916 | 9 | QUESTION:
But also there was a potential risk of others bei ng
infected by you?
ANSWER:
Well, yeah. My Mum used to do my injections. Wh at
would have happened if she would have pricked herse lf 1
at that young age. Obviously, it was quite fortuna te
my Dad didn't do it because he probably would have
pricked ... |
917 | 9 | QUESTION:
Do you know whether your parents were given any a dvice
or information in 1992 about the hepatitis C and it s
seriousness and what should be done about it?
ANSWER:
No, they were told it was essentially just like t he
flu, a bad cold, "but you'll get over it, nothing t o
worry about", and that was it.
|
918 | 9 | QUESTION:
Your statement suggests that in January 1992 when your
parents were finally told about the hepatitis C tha t
there was some discussion about you moving on to
a higher purity concentrates?
ANSWER:
Yes.
|
919 | 9 | QUESTION:
But you think that didn't happen until about 1994 ?
ANSWER:
Correct.
|
920 | 9 | QUESTION:
So again there was a delay in that change in the
products?
ANSWER:
Correct.
|
921 | 9 | QUESTION:
You yourself from about early 1998, by which time you
were a young adult, you asked about the possibility of
being moved on to recombinant treatments you said i n 2
your statement.
ANSWER:
Yes.
|
922 | 9 | QUESTION:
You were told what?
ANSWER:
No. I was too old. I missed the age bracket by
a couple of months. I think the reason that I wasn 't
put on it was because I had the infection of hep c and
there was no point putting me on that because the
damage was done and, obviously, it's a cost
implication involved,... |
923 | 9 | QUESTION:
You were being treated still at Oxford?
ANSWER:
Yes.
|
924 | 9 | QUESTION:
In England?
ANSWER:
Correct.
|
925 | 9 | QUESTION:
You've made an observation in your statement abou t the
different position for patients, as far as you were
aware at the time, in Scotland and Wales. What was
that difference?
ANSWER:
That the Welsh people would get it at any age, so my
parents enquired about moving to Wales to get me th at
better trea... |
926 | 9 | QUESTION:
Now, there came a point in time at which a letter was
sent to you -- I'm going to ask for that to go up o n
3
screen. It's 1057006.
It's a letter dated 20 September 2004 and it
provided information about possible risks of vCJD. Do
you recall receiving that letter?
ANSWER:
No, no, I don't. I'... |
927 | 9 | QUESTION:
If we just keep this letter up on screen but we g o to
the second page, please, Paul, we'll see under what
has happened there's a reference to product recalls
after donors had been found to have vCJD and then i t
says this:
"We're writing to you to give you further
information about these and about furth... |
928 | 9 | QUESTION:
If we could just go to the next page, please, Pau l, if
you could just highlight the section under "Can I f ind
out if I've been treated with an implicated batch",
second paragraph, Paul,"If you would like to find 5
out", just highlight that.
So this letter said:
"If you would like to find out whether ... |
929 | 9 | QUESTION:
-- whether you were just generally at risk as som eone
who had received clotting factors or whether there was
a more specific and focused risk in your case?
ANSWER:
Yes. Against my parents' wishes, because obvious ly
I had been through enough in their opinion, they sa id,
"Look, don't worry yourself wit... |
930 | 9 | QUESTION:
If we look at, please, document 1057007, Paul.
This was the request you sent. You wanted
a risk assessment to ascertain what risk you were a t
from CJD. You wanted to know how many batches you had
had and whether or not the risk in increases due to
the number of batches you had had.
Then if we can go to... |
931 | 9 | QUESTION:
What did you understand from the information you were
receiving?
ANSWER:
I was extra lucky: I got two hits. So from that,
obviously, it caused serious concern and alarm.
I spoke to the Haemophilia Centre. They tried to s ay
the risk was minimal but I'd heard that before with
hep c. I'd heard that bef... |
932 | 9 | QUESTION:
Have you ever received any more information than what
we see set out in letter --
ANSWER:
Nothing.
|
933 | 9 | QUESTION:
-- about the nature or extent of the risk you
personally may be exposed to?
ANSWER:
Nothing. I had to chase it. The Haemophilia Soc iety
posted on their website about two years ago there w as
two cases of sporadic CJD in haemophiliacs, and tha t
was posted about two years ago and that sent me ...
|
934 | 9 | QUESTION:
Take your time?
ANSWER:
That sent me over the edge because at that point I had
a little boy who was my life and I didn't want him to
see his Dad waste away, so it was quite tough.
|
935 | 9 | QUESTION:
Do you want some water, Matt? 8
ANSWER:
Sorry.
|
936 | 9 | QUESTION:
Since 2004 when you received this
information, you've lived with the fear and you
continue to live with the fear that you may develop
vCJD.
ANSWER:
Yes, every day you fall off balance or you forget
something you think it's starting, you think it's
starting and it's horrible. I am antidepressant
depen... |
937 | 9 | QUESTION:
You very powerfully said in your statement, Matt, that
one of the things that makes you most angry and mos t
upset is the impact on your wider family. You've g ot
a sister?
ANSWER:
Two sisters.
|
938 | 9 | QUESTION:
Your parents, you've said for them there's a feel ing
of guilt because they allowed you to have the
concentrates, given the assurances that they had be en
given? 9
ANSWER:
Correct, correct. Like I said before, I have an
amazing set of parents. I couldn't wish for better
parents. I'm blessed. But wh... |
939 | 9 | QUESTION:
Just going back to the hepatitis C infection --
ANSWER:
Yes.
|
940 | 9 | QUESTION:
-- I'm going to ask you in a moment about the
treatment you had and the effect of that treatment?0
ANSWER:
Yes.
|
941 | 9 | QUESTION:
-- but before you had treatment for the hepatitis C,
how did the knowledge that you had hepatitis C affe ct
the rest of your childhood and your young adulthood ?
ANSWER:
It's very hard because when I was young, it was - -
I was told it's not a big deal, its non-A non-B. I ts
just like a cold or a flu. ... |
942 | 9 | QUESTION:
Did it affect your schooling?
ANSWER:
I was tired. My attention span is that of a gnat .
I can't sit still. It's -- yeah, can't concentrate .
It did affect it massively.
|
943 | 9 | QUESTION:
What about as a teenager and young adult, your
behaviour, your emotions, how was that impacted.
ANSWER:
Yes, my emotions have been impacted massively by this
but what caused the most damage was the treatment.
I've always been a very affectionate caring person.
1
I had the treatment and that complete... |
944 | 9 | QUESTION:
That treatment, there's the treatment for hepatit is C
that you began in autumn 2005.
ANSWER:
Correct.
|
945 | 9 | QUESTION:
What treatment were put on?
ANSWER:
Ribavirin interferon.2
|
946 | 9 | QUESTION:
In terms of the physical effect of it, how can yo u
describe that?
ANSWER:
Dog-tired, angry, couldn't concentrate, can't sit
still. It was just horrific. Constantly like your
mind's in a cloud. You can't concentrate. You can 't
think straight. You can't focus things probably. It
wasn't the best. ... |
947 | 9 | QUESTION:
But whilst you were having that treatment, you be came
very depressed. Your temperament altered in the wa y
you described. You decided there was no point
bothering --
ANSWER:
Correct.
|
948 | 9 | QUESTION:
-- with things because you thought you were going to
die?
ANSWER:
Yes.
|
949 | 9 | QUESTION:
-- and you had suicidal thought thoughts?
ANSWER:
Big time, yeah, and I even have those thoughts to day.
I just still have this immense feeling of guilt ove r
me. I have this irrational anger that burns inside me
and I don't -- I've driven to the train station on two 3
occasions to kill myself, in fa... |
950 | 9 | QUESTION:
So the hepatitis C virus was cleared by the treat ment?
ANSWER:
Yes.
|
951 | 9 | QUESTION:
So now the levels of hepatitis C are undetectable is
the way in which you have put it in your statement?
ANSWER:
It's untraceable; so it's gone.
|
952 | 9 | QUESTION:
In terms of physical consequences for your liver,
what's the position in relation to that?
ANSWER:
Got scarring and cirrhosis; so my liver's damaged
because of it.
|
953 | 9 | QUESTION:
And you have tests routinely --
ANSWER:
Correct, yes.
|
954 | 9 | QUESTION:
-- to keep that under review?
ANSWER:
Yes. So when I had it, recently one of my liver
function tests went very high and obviously I get
concerned thinking, "Oh, is this the start of liver
cancer? Is this the start of the end for me?" and
that's what you think about.
If I go to the haemophilia centre ... |
955 | 9 | QUESTION:
What's the impact of everything you've described, the
infection with hepatitis C, the treatment, the effe ct
the treatment had on you, and then this fear that
overshadows everything in relation to the vCJD, wha t's
the impact of that been on your ability to work and
maintain your career and to look afte... |
956 | 9 | QUESTION:
You have had to -- in terms of work opportunities ,
5
you've had to, for the reasons you've given, turned
down promotions, turned down opportunities to trave l?
ANSWER:
Yes. I get very, very tired. If I -- because my
ankles have been fused and they're arthritic and
I got -- I can't lift my elbow bec... |
957 | 9 | QUESTION:
One of the things you say in your statement is on e of
your many fears is, if something happens to you, is
that you are not in a position to leave your partne r
and your children financially well cared for?
ANSWER:
I won't be working by the time I'm 40 I don't fee l.
The tiredness, the fatigue, the depre... |
958 | 9 | QUESTION:
What have the effects been in terms of when you a re
trying to access other treatment, for example, dent al
treatment what's happened then? 6
ANSWER:
Yeah, so I went to my dentist some time ago and h e
wouldn't treat me because I was exposed to new vari ant
CJD. The instruments were too expensive so h... |
959 | 9 | QUESTION:
What about when you just go for some of the routi ne
treatment that as a life-long haemophiliac you will
inevitably have to go to, what happens in terms of the
way in which you are treated?
ANSWER:
So obviously I'm blessed to have cleared the viru s and
I cleared that at a young age, but there's massive ... |
960 | 9 | QUESTION:
Whenever you do have any kind of procedure you ar e at
the end of the list.
ANSWER:
Oh yeah, yes.
|
961 | 9 | QUESTION:
You are made to feel very aware that you are at t he
end of the list?
ANSWER:
Yes.
|
962 | 9 | QUESTION:
Have you ever been offered any form of counsellin g to
deal with the issues that you have identified in te rms
of the exposure to infection and risk of vCJD?
ANSWER:
No, no, none, absolutely none. I've had to -- my Dad
when I was younger was desperate to put me on it
because I was slowly killing mysel... |
963 | 9 | QUESTION:
You get an amount of regular payment from you, go t 8
some monies originally from the Caxton Foundation a nd
now form the EIBSS?
ANSWER:
Yes.
|
964 | 9 | QUESTION:
What has been your experience of making applicati ons
for financial assistance?
ANSWER:
Caxton Foundation, I can't -- I don't even rememb er
applying for it. That money went in a matter of
months. I thought I was going to die, so I just
spanked it. I was 20. I thought, do you know what ,
I'm not go... |
965 | 9 | QUESTION:
Matt, those are the questions I had for you. I a m
going to ask Mr Stein in a moment if there is any
other matter he would like me to raise but is there
9
anything else you'd like to say about your evidence ?
ANSWER:
The evidence is true. It's all been really, real ly
painful. I love my family s... |
966 | 10 | QUESTION:
Fiona, you were diagnosed with von Willebrand's
disease at the age of 4.
ANSWER:
Yes, I was.
|
967 | 10 | QUESTION:
And your mother had been told what you could and
couldn't do?
ANSWER:
Yes.
|
968 | 10 | QUESTION:
So lots of your childhood activities were restric ted?
ANSWER:
They were, yes.
|
969 | 10 | QUESTION:
As an older child, a young teenager, you had some
issues with your teeth. Can you tell us what was
wrong.
ANSWER:
Yes, I can. I wasn't -- I had an overcrowded mou th
and so I had lots of teeth. Some of the front teet h
were pointing out forwards and they had been for li ke
most of my young life, unfo... |
970 | 10 | QUESTION:
What impact did that have on you as a young perso n?
ANSWER:
It was horrible and I used to have the mickey tak en
out of me at school constantly. It bothered me far
more than von Willebrand's disease as a young perso n
because it's so important to try to fit in and feel
like everybody else and I looked q... |
971 | 10 | QUESTION:
But when you were about 16 in October 1981 you ma naged
to persuade a dentist to refer you for treatment.
ANSWER:
I did, yes. I'd already removed the front ones
myself. I remove them one night with a tin of talc um
powder and my father's pliers.
I was distraught by the look of them and had
been for ... |
972 | 10 | QUESTION:
By 16, October '81, you had managed to persuade t he
dentist to refer you --
ANSWER:
I did.
|
973 | 10 | QUESTION:
-- for full treatment?
ANSWER:
Yes.
|
974 | 10 | QUESTION:
What were you told was required?
ANSWER:
That they were going take some teeth out from rou nd
the back then I could go forward and have braces
fitted, et cetera, to have the teeth straightened a nd
moved around.
|
975 | 10 | QUESTION:
And to have that procedure, you were told you wou ld
need Factor VIII?
ANSWER:
Yes.
|
976 | 10 | QUESTION:
When there was the discussion about
having the Factor VIII for the dental procedure, we re
you warned of any risks in receiving it?
ANSWER:
No, no risks.
|
977 | 10 | QUESTION:
You received the Factor VIII both before and afte r the
surgery?
ANSWER:
I did.
|
978 | 10 | QUESTION:
And then you didn't receive any blood products fr om
that point in time until you were diagnosed with
hepatitis C, did you?
ANSWER:
No, I didn't.
|
979 | 10 | QUESTION:
As an adult, you were diagnosed with thyrotoxicos is,
excess thyroid hormone.
ANSWER:
No, I've got an under-active thyroid.
|
980 | 10 | QUESTION:
Sorry, under-active thyroid?
ANSWER:
Yes.
|
981 | 10 | QUESTION:
You had some problems with your knees?
ANSWER:
Terrible swelling of the knees which regularly
required a fluid to be removed and cortisone
injections to be inserted into the knees. It went on
for years and still to this day sometimes I do have
treatment on my knees.
|
982 | 10 | QUESTION:
But apart from that you were generally well in yo ur
early adulthood?
ANSWER:
Yes, generally well.
|
983 | 10 | QUESTION:
In 1985 when you were pregnant with your eldest
daughter you were tested for HIV.
ANSWER:
I was.
|
984 | 10 | QUESTION:
And it was negative.
ANSWER:
It was.
|
985 | 10 | QUESTION:
Why were you tested at that point?
ANSWER:
I had had a fairly normal pregnancy and I had got to
38 weeks pregnant when my mother, who was at the ti me
a senior midwife and ran the antenatal clinic at ou r
local hospital, contacted me to say, "I needed to s ee
you". I was, "Oh okay, Mum, any time", an... |
986 | 10 | QUESTION:
Then from that point in time when you had the neg ative
HIV test through until you were -- until 2011, whic h
we will come to, you weren't called in to be checke d
for hepatitis C at any point, were you?
ANSWER:
No, not at all.
|
987 | 10 | QUESTION:
You weren't part of any look-back exercise?
ANSWER:
Not at all.
|
988 | 10 | QUESTION:
During that time you also carried triplets.
ANSWER:
I did.
|
989 | 10 | QUESTION:
Even then there was no testing for hepatitis C?
ANSWER:
There was no testing for hepatitis C. When I gav e
birth to my triplets, I was tested for
von Willebrand's disease and because von Willebrand 's
disease is a disease that cycles the hospital that
I was tested at said that at that point in time the... |
990 | 10 | QUESTION:
You were working as a paramedic?
ANSWER:
I was.
|
991 | 10 | QUESTION:
Because of that work, you were vaccinated against
hepatitis B and screened regularly?
ANSWER:
Yes.
|
992 | 10 | QUESTION:
You underwent a routine screening in June 2011?
ANSWER:
Yes.
|
993 | 10 | QUESTION:
And your understanding was that that was for hepa titis
B?
ANSWER:
Absolutely. I didn't ask and I wasn't told but
because we screened every three years I went for my
routine occupational health screening and gave the
normal blood test.
|
994 | 10 | QUESTION:
Then on 27 January 2012 you were telephoned by yo ur
occupational health team. Can you tell us what
happened.
ANSWER:
Yes. It's a vivid memory because I think it was the
day that I became mentally unwell. I was answering an
emergency call. I was driving an ambulance respons e
car. I was driving ... |
995 | 10 | QUESTION:
How did you feel at that moment?
ANSWER:
Shocked, very shocked. Scared for myself but als o
scared for the fact that I was the nearest response
vehicle to a road traffic collision that were
expecting an eight minute ambulance paramedic
response, that there could be people within that
collision that we... |
996 | 10 | QUESTION:
Were you aware even that you had been tested for
hepatitis C?
ANSWER:
No.
|
997 | 10 | QUESTION:
So this was the first you had heard about it?
ANSWER:
Yes.
|
998 | 10 | QUESTION:
After the occupational health team telephoned you ,
what happened next?
ANSWER:
I made the decision to pull over because it was u nsafe
to continue, so I pulled over and spoke to them aga in
and -- because I didn't realise I'd been tested so
I was asking them how they knew I could possibly be
hepat... |
999 | 10 | QUESTION:
Once you had had that call from occupational heal th
telling you, from that point on until rather later you
were not able to be operational as a paramedic?0
ANSWER:
No. You can't perform exposure-prone procedures.
|
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