Unnamed: 0 int64 0 47k | index int64 0 357 | q_a stringlengths 22 51.4k ⌀ |
|---|---|---|
800 | 7 | QUESTION:
Without your knowledge. Do you know what has happe ned
to that charge now?
ANSWER:
I believe that the charges have been dropped, for w ant
of a better phrase. Yes, I think there were nine
registrants altogether, and I believe now they have
been removed.
|
801 | 7 | QUESTION:
You have said in your statement that you were at so me
stage a trustee of the MacFarlane Trust.
ANSWER:
Yes.
|
802 | 7 | QUESTION:
What can you tell us about the trust from that
perspective?
ANSWER:
Not very good things. It seemed that they always
wanted to bring people down to a level, not raise t hem
up to a level. There's very little empathy with HI V
or AIDS-related conditions, what people were going
through. It was just no... |
803 | 7 | QUESTION:
You have given, I think, two examples in your
statement of the decisions of the EIBSS; not decisi ons
personally in relation to any application by you, b ut
that you, through your campaigning or Birchgrove Gr oup 7
activities, have had some knowledge of. One was ab out
a member of your group, the Birc... |
804 | 7 | QUESTION:
What do you recall about that, without mentioning a ny
names?
ANSWER:
No. He will mention his own name. Yes. He was ta ken
ill on holiday and there was a shortfall in holiday
insurance, and they basically refused to pay. It w as
£100-odd, something like that. They refused to pay
because it was HIV r... |
805 | 7 | QUESTION:
There's a passage in or a couple of passages in you r
witness statement I am just going to read out, with
your agreement, where you try and describe what the
effect overall has been on your life, of the events
you have described. You say this:
"From that brief time in 1985, my life both
physically and me... |
806 | 8 | QUESTION:
And you have described your former husband in this
way:
"He lived a very normal life. You wouldn't have
known he was a severe haemophiliac. He lived life to
the extreme and then an extra 10%, to the annoyance of
his parents."
ANSWER:
Yes.
|
807 | 8 | QUESTION:
You bought a property together at a very young age.
ANSWER:
Yes.
|
808 | 8 | QUESTION:
And you married at a very young age --
ANSWER:
Yes.
|
809 | 8 | QUESTION:
-- in 1984, when you were just 18.
ANSWER:
Yes.
|
810 | 8 | QUESTION:
We have already heard from him about the glandular
fever that he had in 1984, early 1984. Can you rec all
anything about that?
ANSWER:
Yes. At the time I was living with his parents,
because we'd bought the house and it was just going
through and I had to find a job in that area, so we
moved in with ... |
811 | 8 | QUESTION:
It is all right. Take your time.
ANSWER:
Blimey. I have got no chance if I'm crying already ,
have I?
My father always said that we were cannon fodder,
you know. As working class people, that's what we
were. Well, I didn't want to be cannon fodder. So
I met [redacted]. We both were very focused on... |
812 | 8 | QUESTION:
And that's how you had started your married life at
this very young age.
ANSWER:
Yes.
|
813 | 8 | QUESTION:
With buying a home and with aspirations to do the v ery
best for yourselves that you could.
ANSWER:
Yes.
|
814 | 8 | QUESTION:
We have already heard about [redacted] being taken ill
in the early part of --
ANSWER:
I'm sorry, you asked me about glandular fever.
|
815 | 8 | QUESTION:
No, that's all right.
ANSWER:
I completely went off on a tangent.
|
816 | 8 | QUESTION:
Don't worry, I had forgotten I asked the question.
ANSWER:
So we were living with his parents and he got reall y
ill, but [redacted] was the type of person that did n't
really get ill, and even though he had bleeds and h e
had issues with haemophilia, it was never an issue.
We used to -- I mean, like he ... |
817 | 8 | QUESTION:
You have told us how very young you were at the tim e.
We have got a photo that shows that very clearly.
Could we put up the photo, please? It is only goin g
to be shown in this room. We can see there a pictu re
on the screen of the two of you at this time, littl e
more than children.
ANSWER:
Yes.
|
818 | 8 | QUESTION:
You did have a termination in August of 1985.
ANSWER:
Yes.
|
819 | 8 | QUESTION:
That [redacted] was HIV positive was subsequently
confirmed. You were tested and at that point in ti me
the test came back negative.
ANSWER:
Correct.
|
820 | 8 | QUESTION:
In the years that followed the diagnosis in 1985, y ou 0
have described them in your statement as being
incredibly difficult years.
ANSWER:
Yes.
|
821 | 8 | QUESTION:
You thought your husband was going to die.
ANSWER:
Yes, but he never did. So basically our life just
carried on the same, and all that happened is it
became more and more difficult for [redacted] to ac t
rationally. I am sorry, because, you know, he
obviously is in the room. It was difficult, you kn ... |
822 | 8 | QUESTION:
In 1989 you found out that you were pregnant again.
ANSWER:
Yes.
|
823 | 8 | QUESTION:
You discovered that I think quite late.
ANSWER:
Yes.
|
824 | 8 | QUESTION:
And you went to see your GP.
ANSWER:
Yes.
|
825 | 8 | QUESTION:
What can you recall your GP saying to you?2
ANSWER:
I don't -- if I'm honest, I don't -- I think, if
I look back on it now and if I'm perfectly truthful
with you, probably since that day, which is, what,
30 years ago, 20 years ago -- no, 30 years ago, my two
pregnancies have been one, because I can't ac... |
826 | 8 | QUESTION:
Would you like a break?
ANSWER:
I'm so sorry.
|
827 | 8 | QUESTION:
There's no need to apologise at all. Would you lik e
a break?
ANSWER:
No. I'm okay.
|
828 | 8 | QUESTION:
There's some water beside you.
ANSWER:
I'm not sure I can hold it, but yes, thank you.
|
829 | 8 | QUESTION:
You have said in your statement -- and I will read
a sentence from your statement, if I may -- about t his
time:
3
"I was a frightened young woman who went to my GP
for help and I was made to feel like I had no other
option than to terminate my pregnancy. I can no
longer even comprehend what was s... |
830 | 8 | QUESTION:
You haven't at all.
You have in your statement described what happened
on the day of the termination.
ANSWER:
Yes.
|
831 | 8 | QUESTION:
And I have heard you talk about that before.
ANSWER:
Yes.
|
832 | 8 | QUESTION:
It is entirely a matter for your decision as to 5
whether you want to say anything about that now,
whether you would like me to read that passage from
your statement, or whether you would rather we did not
talk about it further.
ANSWER:
I think that you have to talk about it, because tha t
is what happ... |
833 | 8 | QUESTION:
You said in your statement you went home. The two of
you never discussed it again, and then you have no
idea how you made it through the weekend, and on
Monday you had to go back to work as if nothing had
happened.
ANSWER:
Yes.
|
834 | 8 | QUESTION:
You were offered at that time no counselling and no
support.
ANSWER:
No. I wouldn't even know what that was, if I am
honest. What is that? You know, at the time I was n't
aware -- I know it sounds ridiculous -- that
counselling even existed. What is that? I don't
7
know. I didn't know at the ... |
835 | 8 | QUESTION:
You have said in your statement that the fact that you
had two terminations as a result of the Contaminate d
Blood Scandal is something you struggle to live wit h
on a daily basis. You don't know how you made thos e
decisions and you have been unable to forgive
yourself.
ANSWER:
I can't. How can I, y... |
836 | 8 | QUESTION:
We will come back to your reference to Positive Wom en
and some of the complaining work you have done in 8
a little while.
ANSWER:
Yes, yes.
|
837 | 8 | QUESTION:
Following 1989, you and [redacted] increasingly liv ed
separate lives. You have described how you were
working multiple jobs. You felt isolated in a priv ate
world in which you had no-one else to talk to, and you
have said in your statement that seeing each other was
a constant reminder.
ANSWER:
Yes.... |
838 | 8 | QUESTION:
In 1997 the two of you separated, 1997/1998, and yo u
went to stay with your mum.
ANSWER:
Yes.
|
839 | 8 | QUESTION:
You became over the following months very ill and y ou
lost an awful lot of weight.
ANSWER:
Yes. So in -- see, I don't know when I left, wheth er
it was 1997 or 1998, to be honest.
|
840 | 8 | QUESTION:
Don't worry.
ANSWER:
I think it was 1998. So I went to live with mum, G od
bless her, and on the New Year's Day 1998 I was
violently sick. I had walked home from a friend's.
She always had a New Year's Day party and I was jus t
violently sick. Nothing else, no other symptoms, j ust
this sick. I jus... |
841 | 8 | QUESTION:
And you had been tested in 1985 --
ANSWER:
Yes.
|
842 | 8 | QUESTION:
-- and in 1989.
ANSWER:
Yes.
|
843 | 8 | QUESTION:
Those tests were negative.
ANSWER:
Yes.
|
844 | 8 | QUESTION:
But when you were tested again in 1999, the test ca me
back positive.2
ANSWER:
Yes.
|
845 | 8 | QUESTION:
And you were told, your statement says, that you ha d
probably been infected by then for a number of year s.
ANSWER:
They say -- I mean, obviously it is very hard to sa y
with HIV. So you can't categorically say, "This is
when I was infected". But it could be to my mind t hat
when I was tested in 1989 ... |
846 | 8 | QUESTION:
You say in your statement that you had been advised by
the MacFarlane Trust not to keep going for tests --
ANSWER:
Yes.
|
847 | 8 | QUESTION:
-- because that might impact upon your ability to g et
a mortgage or insurance.
ANSWER:
Yes, yes. I mean, you've got to remember at that t ime
we couldn't have any insurance because of [redacted ].
We couldn't have any cover on our mortgage. So eve ry
time he'd lose a job, we'd get no cover, we'd get ... |
848 | 8 | QUESTION:
Over the years that followed you have suffered from
a number of opportunistic infections --
ANSWER:
Yes.
|
849 | 8 | QUESTION:
-- through having HIV, and the treatment process fo r
you has been far from straightforward. We have got
a letter that shows some of the problems you have h ad
with the different medication regimes.
ANSWER:
Yes.
|
850 | 8 | QUESTION:
Henry, it is 1388004, please: it says this. It is
a letter dated September 2019 from Dr Roberts:
"To whom it may concern."
It explains you have:
"... had a complex antiretroviral history, having
been initially on a combination of Combivir with
Efavirenz from July 1999 to June 2005. She started to
de... |
851 | 8 | QUESTION:
"In March 2009 it became clear that she was develop ing
classical side effects to Efavirenz with memory and
sleep disturbance and made a further switch to Truv ada 4
with Atazanavir/Ritonavir."
ANSWER:
The Efavirenz or however we say it -- because I hav e
no idea what tablets I am even on now, they are ... |
852 | 8 | QUESTION:
It does.
ANSWER:
So, you know, it is only when you talk to other peo ple
and you think, "I am on that drug and that does do
that for me", because you just accept that is
a process within your infection, so ...
|
853 | 8 | QUESTION:
Then we can see that the letter records as recently as
2018:
"In 2018 we observed a deterioration in her renal
function, and as data concerning the use of TDF
tenofovir became clearer that this agent can be
associated with reasonable tubular disorders, added to
5
which we undertook a bone densit... |
854 | 8 | QUESTION:
You have related in your statement that you have
suffered from cognitive difficulties in relation to
concentration and memory.
ANSWER:
Very difficult when you are an accountant, you know .
When [redacted] and I were going through really,
really rough times, I decided that I was going to t ake
myself bac... |
855 | 8 | QUESTION:
You have told us how there was an absence of help a nd
support in the early years. Very recently, this ye ar,
you have been receiving trauma therapy --
ANSWER:
Yes.
|
856 | 8 | QUESTION:
-- from a clinical psychologist.
ANSWER:
Yes.
|
857 | 8 | QUESTION:
You say in your statement over the years you have
tried some forms of earlier therapies.
ANSWER:
Quite generic. You know, you could go through the
National Health Service before, because there was some
kind of help for mental health. I mean, there is
nothing now. You can try generic therapists. But, ... |
858 | 8 | QUESTION:
Not at all. You were talking about the counselling .
That has been funded through the EIBSS.
ANSWER:
So I had to obviously jump through a large amount o f 2
hoops in order to get this, but I believe that I ne ed
to heal and I'm passionate enough that I can put th is
together to get this healing, becaus... |
859 | 8 | QUESTION:
You heard the evidence that [redacted] gave about t he
American litigation.
ANSWER:
Yes.
|
860 | 8 | QUESTION:
I think you too went to the States for the purposes of
that litigation.
ANSWER:
Yes.
|
861 | 8 | QUESTION:
And you have a recollection of the questions that y ou
were asked.
ANSWER:
Yes. Well, first and foremost, when I went in to g ive
my evidence, I was told not to look like a woman.
3
Does that make sense? As in sexual, as in as a woman ,
as in, you know, that you would prefer to dress, th at
you ... |
862 | 8 | QUESTION:
Yes.
ANSWER:
So I had to change my dress. That was the very fir st
thing, because I had a shift dress on, and at the t ime
I was very, very slim, so I guess -- you know. Tha t
was number 1.
So you go into a room and I think there were five
attorneys there, and they were so aggressive you wo uld
not ... |
863 | 8 | QUESTION:
Can I ask you a little bit about the MacFarlane Tru st.
One of the observations you've made in your stateme nt
about the recent dissolution of the MacFarlane Trus t
was the transfer of its funds to the Terrence Higgi ns
Trust.
ANSWER:
Yes.
|
864 | 8 | QUESTION:
And the point you have made in your statement was t hat
that was undertaken with no consultation with the
community.
ANSWER:
No. So I didn't find out about the THT until it wa s
all done. I don't think any of us found out about the
THT until it was all done. I don't have a problem
with THT, but THT,... |
865 | 8 | QUESTION:
You have had numerous dealings with the MacFarlane
Trust over the years.
ANSWER:
Yes.
|
866 | 8 | QUESTION:
And because you were infected as a result of your
relationship with your husband --
ANSWER:
Yes. 8
|
867 | 8 | QUESTION:
-- you are what the MacFarlane Trust termed
"an infected intimate".
ANSWER:
Yes.
|
868 | 8 | QUESTION:
That's a phrase which you have described in
communications to the MacFarlane Trust as insulting
and dated, and you asked over a number of years for
that term to be abandoned.
ANSWER:
Yes. Since 2005.
|
869 | 8 | QUESTION:
You believe that women infected in the way that you
were infected have been overlooked or disadvantaged by
the trusts and schemes.
ANSWER:
Yes. I mean, I don't -- again, you know, I am not
putting us above anybody. I just want us to be loo ked
at as an equal thing, to be recognised of who we we re.
W... |
870 | 8 | QUESTION:
You've sought to raise your concerns about the
differential treatment of this category the MFT ter med
"infected intimates" over the years with the
MacFarlane Trust, Department of Health, EIBSS and
others.
ANSWER:
Yes. Haemophilia Society. The term doesn't -- the y
have taken some of the deed -- I me... |
871 | 8 | QUESTION:
It is the fact that this category was treated under
the MacFarlane scheme differently, receiving less
money than those directly affected, and then the
differential under EIBSS between the categories of
those infected --
ANSWER:
That's correct.
|
872 | 8 | QUESTION:
-- through one route or falling into different
categories compared to those who can just go throug h
the stage 1 and stage 2 process --
ANSWER:
Yes, that's correct.
|
873 | 8 | QUESTION:
-- have been the concerns you raised.
ANSWER:
Yes, and that's not just for me. That is for lads who
were young at the time who were given different to
somebody who was married with children. Well, thos e
lads now, some of them are married with children. So
why is that difference still there?
So the... |
874 | 8 | QUESTION:
Those, as I understand it, are the principal issues
that you as part of I think the campaign organisati on
Positive Women, have sought to raise over the years
with these various organisations?
ANSWER:
Yes. Well, myself and another lady, we are very
different in our personalities. We are very differ ent ... |
875 | 8 | QUESTION:
Those are the questions I have for you. Before I a sk
you if you have anything you want to add, I am just 3
going to ask Mr Snowden if there's any further
questions he has. No.
Is there anything further you want to say?
ANSWER:
I just want to say to everyone in this room, I know we
have all been inf... |
876 | 9 | QUESTION:
Matt, you suffer from a condition known as
haemophilia B; is that right?
ANSWER:
Correct, yes.
|
877 | 9 | QUESTION:
Can you tell us what that is?
ANSWER:
It's a bleeding disorder where my blood doesn't c lot
properly.
|
878 | 9 | QUESTION:
It involves a deficiency of a different factor pr oduct
from haemophilia ANSWER:
Your deficiency is Factor IX?
|
879 | 9 | QUESTION:
It is a condition, I think, that used to be known as
Christmas disease?
ANSWER:
Yes, correct.
|
880 | 9 | QUESTION:
And it's, in your case, it's severe?
ANSWER:
Correct, yes.
|
881 | 9 | QUESTION:
That means you have a very tiny percentage, indee d of
the clotting Factor IX in your blood?
ANSWER:
Correct.
|
882 | 9 | QUESTION:
Now when approximately was the haemophilia B
diagnosed?
ANSWER:
When I was around a year old. I fell out the cot , put
my two teeth through my front lip.
|
883 | 9 | QUESTION:
Your parents took you to hospital?
ANSWER:
Yes.
|
884 | 9 | QUESTION:
That's went it was diagnosed?
ANSWER:
After about three or four days of testing, but ye ah.
|
885 | 9 | QUESTION:
As I understand it there was no previous family
history of haemophilia?
ANSWER:
No, no.
|
886 | 9 | QUESTION:
You were referred, and you were a very young chil d at
this time, but you were referred to the Oxford
Haemophilia Centre under the care of Dr Rizza and
Dr Matthews?
ANSWER:
Correct, yes.
|
887 | 9 | QUESTION:
For many years your parents regularly took you to the
Oxford Haemophilia Centre for check ups and for
treatment?
ANSWER:
It was pretty much on a weekly basis for the firs t
three or four years of my life and then ongoing
check-ups every three to six months.
|
888 | 9 | QUESTION:
Now, you started to be treated with a factor prod uct
and, as I understand it from your statement, you'd be
treated when you had a bleed but also there came
a point in time fairly quickly when you were given
treatment prophylactically on a regular basis?
ANSWER:
Correct.
|
889 | 9 | QUESTION:
What is your understanding from your records or f rom
your conversations with your Mum and Dad about how
that came about?
ANSWER:
Discussion with Dr Rizza, Dr Matthews to prevent
bleeding to have prophylaxis to stop you from becom ing
poorly in later life or have joint issues.
|
890 | 9 | QUESTION:
We can see from the handful of records that you h ave
been able to obtain from the Oxford Haemophilia
Centre, if we have up on screen please, Paul, 10570 03.
This is a letter from August 1986, so a little
while further on. If we pick it up in the first
paragraph, it refers to you going on holiday to Fra... |
891 | 9 | QUESTION:
That treatment was often given to you at home. W as it
administered by your parents?
ANSWER:
Yes, my Mum used to do it. My Dad was awful. He used
to miss the vein.
|
892 | 9 | QUESTION:
What is your understanding based upon the
conversations you have had with your Mum and Dad ab out
this I know many times over the years, what is your
understanding of what your parents were told of the
Oxford Haemophilia Centre when they were asked to g ive
their consent to you receiving these factors
tr... |
893 | 9 | QUESTION:
There was some discussion at some point early on about
something to do with the risk of hepatitis but they
were given a particular assurance by Dr Rizza about
the nature of that risk and how severe it would be.
Can you recall from what your parents had told
you what was said to them?
ANSWER:
This wa... |
894 | 9 | QUESTION:
Now, you don't know, obviously you were very youn g at
the time, exactly what products or what time period
led to you being infected?
ANSWER:
No.
|
895 | 9 | QUESTION:
But if we just look at the records. Can we have
1057004, please, Paul.
These are records that you've obtained from the
Oxford Haemophilia Centre; is that right?
ANSWER:
Correct.
|
896 | 9 | QUESTION:
We can see here time periods from 1981 and we don 't
need to look any further than this period, I think,
that we've got on the screen now, 1981 through to
1983. We can see in the box type of material, you
were being given something called 9D and then I won 't
ask you to look at all the detail of it, Mat... |
897 | 9 | QUESTION:
You have said in your statement that you think yo u
were probably exposed to contaminated concentrates at
some point between 1981 and 1984. What's the basis
for you thinking that that's the likely time-frame in
which you were exposed?
ANSWER:
Because the treatment improved from 1985/1986 but I'm
not -... |
898 | 9 | QUESTION:
You have also set out very clearly in your statem ent
your view that you may have been what's been referr ed
to in some material as a PUP, a previously untreate d
patient?
ANSWER:
Yes.
|
899 | 9 | QUESTION:
What's the basis for that belief, Matt?
ANSWER:
I was very, very young. If my parents were told the
risk then they wouldn't have given me the factor
that's caused so much damage, that there was no nee d
for me to have factor. My parents weren't told abo ut
the risks of it but, yeah, I've seen records ... |
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