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600 | 6 | QUESTION:
Don't worry about that. We understand.
After the birth of your daughter in January 2005
you, because of the chemotherapy, because of the
compromised immune system, you experienced a range of
chest infections, pneumonia, you were admitted to
hospital and then April 2005 with a particular lung
condition ... |
601 | 6 | QUESTION:
Bronchiectasis.
ANSWER:
Bronchiectasis.
|
602 | 6 | QUESTION:
Then 2006 you started on a new drug Truvada and t hen you 3
began to experience stomach pains?
ANSWER:
Yes.
|
603 | 6 | QUESTION:
What can you tell us about that?
ANSWER:
So periodically I would get these incredible cram ps
which weren't normal cramps but they were excruciat ing
kind of doubled-up pain and then they would subside and
the hospital couldn't really find out what was goin g on
until August or July/August 1998 when I ... |
604 | 6 | QUESTION:
2008?
ANSWER:
2008, sorry, yes, when I was taken into hospital.
|
605 | 6 | QUESTION:
Just prior to that I think you'd also started rec eiving
treatment for the hepatitis C; is that right?
ANSWER:
Yes.
|
606 | 6 | QUESTION:
Interferon?
ANSWER:
And Ribavirin.
|
607 | 6 | QUESTION:
Ribavirin, 48 weeks?
ANSWER:
Yes.
|
608 | 6 | QUESTION:
What was that like?
ANSWER:
That was worse than the chemo. It just sucks the very
life out of you physically. It's okay for the firs t few
weeks because your body is getting used to it but y ou
soon get on a very low, kind of a low trajectory do wn,
and it's not only physical but it's mental. You're
... |
609 | 6 | QUESTION:
Then August 2008 you were admitted to hospital an d
placed in intensive care and in an induced coma. W hat
can you tell us about that?
ANSWER:
I was going to say very little because I was asle ep at
the time. I have it on good authority that I was
talking rubbish before they took me off to the thea tr... |
610 | 6 | QUESTION:
I think we've got a picture. It's the other pict ure
that we had up you have provided us with, which is you
in hospital in this time when you were in a coma.
ANSWER:
It's lovely.
|
611 | 6 | QUESTION:
You weren't expected to survive.
ANSWER:
No, no. I was missing the Olympics as well at th e same
time.
|
612 | 6 | QUESTION:
I think you spent quite a few weeks in hospital.
ANSWER:
Yeah.
|
613 | 6 | QUESTION:
And months of recovery.
ANSWER:
Yeah and I cried when I came out because I didn't think
I would come out.
|
614 | 6 | QUESTION:
You did manage to return to work I think in 2010.
ANSWER:
I did.
|
615 | 6 | QUESTION:
You had a further course of treatment for the Hep C in
2015 --
ANSWER:
I did.
|
616 | 6 | QUESTION:
-- which resulted in the virus clearing?
ANSWER:
Absolutely, yes.
|
617 | 6 | QUESTION:
But that's not been the end in terms of health pr oblems.
You've had subsequent hospital readmissions?6
ANSWER:
Yes, yes. So right now every day's an exciting d ay
health-wise. You don't know what your night's goin g to
be like, whether you're still going to have night s weats
and so my liver is cirr... |
618 | 6 | QUESTION:
You described all the side effects or some of the side
effects of the many treatments and drugs you have h ad to
have.
ANSWER:
Yes.
|
619 | 6 | QUESTION:
Vomiting, osteoporosis, anaemia, memory gaps, tir edness,
fatigue, dizziness.
ANSWER:
Yes.
|
620 | 6 | QUESTION:
What about overall the emotional and mental impac t of
everything that you've been recounting to us?
ANSWER:
Good question. Emotionally I think that what it' s done
is actually sharpened my sense for life and 7
relationships. I tend and have tended for a while now
to not worry about small talk so mu... |
621 | 6 | QUESTION:
Can I ask you about your work and career and how that's
been affected by your diagnoses and your illnesses.
ANSWER:
Yes. So I had or have a fantastic job. I'm not there,
I'm off sick at the moment. It's challenging, it's
interesting, it's intellectually demanding and it's
great. I loved it and I felt ... |
622 | 6 | QUESTION:
On the question of travelling abroad you and your family
went on holiday to the States to Disneyland in 2014 ?
ANSWER:
We did.
|
623 | 6 | QUESTION:
So what happened?
ANSWER:
I had previously with work gone to America and th is was
during the time you needed to declare your HIV stat us
because it is a communicable disease, so before you went
you needed to get a visa and then associated with t hat
visa you needed to demonstrate you were going to co ... |
624 | 6 | QUESTION:
You have talked also in your statement about some of the
practical consequences of the infections that you h ave,
cost of travel insurance prohibitively high?
ANSWER:
Yes. I mean, I think it's -- I can understand wh y it is
so high but I didn't ask to be in this situation an d it
just seems so -- it j... |
625 | 6 | QUESTION:
And difficulties in obtaining any form of life in surance
as well?
ANSWER:
Well, that's completely out of the question, so . ..
|
626 | 6 | QUESTION:
The treatment that you described that you and Hea ther
had in order to be able to start your family --
ANSWER:
Yes.
|
627 | 6 | QUESTION:
-- you paid for that privately?
ANSWER:
We did, yes. There was no -- there was no opport unity
within the Macfarlane Trust to -- it wasn't part of 1
their criteria to actually fund those things and th ere
was no other kind of NHS because even though it was
through the NHS and the Chelsea & Westminster H... |
628 | 6 | QUESTION:
Dental care has been problematic as well?
ANSWER:
It has, yes. So earlier I have also experienced turning
up for dental treatment and being confronted by wha t can
only be described as someone that looks like they'v e
just come from Mars. So they all suited and booted ,
masks like this and then you go... |
629 | 6 | QUESTION:
Can I then ask you, you mentioned the Macfarlane
Trust --
ANSWER:
Yes.
|
630 | 6 | QUESTION:
-- and you've said in your statement that you've had
certain payments from the Macfarlane Trust, from th e 2
Skipton Fund?
ANSWER:
Yes.
|
631 | 6 | QUESTION:
But you have talked about the time-consuming natu re of
the applications, seeing why others can struggle an d
having to jump through hoops and I wondered if you could
elaborate upon that.
ANSWER:
Yes. So it's great that these grants are made
available, let me just say that, and what's not so great
is... |
632 | 6 | QUESTION:
In relation to the current scheme, the EIBSS fund ing --
ANSWER:
Yes.
3
|
633 | 6 | QUESTION:
-- what's been your experience in relation to tha t?
ANSWER:
I think in the previous incarnations of the trust , the
Macfarlane Trust and the Skipton Fund, because they had
been there for such a long time or relatively long time,
I did sense that there were people there who had
understood the community... |
634 | 6 | QUESTION:
You have expressed a concern in your statement ab out the
impact of it being means tested.
ANSWER:
Yes. So I don't have a problem with people being means
tested, I just think that sometimes people who are able
to save will save because they want to save for the ir
dependants. If you get to a point w... |
635 | 6 | QUESTION:
Perry, those were my questions for you but do you have
anything else you want to say, anything that's not been
covered?
ANSWER:
I did make a note. I'll just see if you've cover ed it.
Just to say that I really welcome this Inquiry and
I wouldn't want to be in your or your shoes particu larly
because ... |
636 | 7 | QUESTION:
And you were treated at the Birmingham Children's
Hospital, initially with cryoprecipitate.
ANSWER:
Yes.
|
637 | 7 | QUESTION:
Your statement explains that from about late 1974
onwards you received cryoprecipitate at home.
ANSWER:
Yes.
|
638 | 7 | QUESTION:
You were about ten years old at the time. Was that
partly for reasons of geographical distance from th e
hospital?
ANSWER:
Yes. We lived about 25/30 miles away. So we were
deemed -- yes, we could go on home treatment. So m y
parents invested in a large deep freeze, because cr yo
was quite a large co... |
639 | 7 | QUESTION:
What was the effect of your haemophilia and your ne ed
for treatment on your education as you were growing
up?
ANSWER:
Same old story, really, with severe haemophiliacs.
I did miss quite a bit of schooling, both, you know ,
secondary and junior. I didn't do too badly, but y es,
I missed more than I s... |
640 | 7 | QUESTION:
You record in your witness statement being told whe n
you were relatively young -- and this is before you
were informed of your infection through blood
products -- that you wouldn't live past 35.
ANSWER:
No, that's right. That was quite a common thing on
the ward at the Children's Hospital. When we used... |
641 | 7 | QUESTION:
You said in your statement at some stage it made yo u
resolve that you would live to at least 36.
ANSWER:
Well, yes, yes.
|
642 | 7 | QUESTION:
But you also say you were made to feel like a burde n
to the NHS.
ANSWER:
Yes, very much so, because you didn't seem to fit i nto
one category or another. It was odd, because you
could sometimes walk about, so you weren't a disabl ed
person, but you weren't -- you fell between two
stools, if you like... |
643 | 7 | QUESTION:
Now, you were first offered Factor VIII products in
1977. You would have been early teens at that poin t.
ANSWER:
Yes.
|
644 | 7 | QUESTION:
You said in your statement you think it was by
Dr Gilian Man but it could have been Dr Frank Hill.
ANSWER:
Yes, it was one of the two.
|
645 | 7 | QUESTION:
That was Factor VIII products by way of home
treatment.
ANSWER:
Yes.
|
646 | 7 | QUESTION:
Can you recall what your parents or you were told
about any risks?
ANSWER:
We weren't told of any risks and I have confirmed t hat
with my parents. All we were told was that this wa s
a groundbreaking medical development.
|
647 | 7 | QUESTION:
You said in your statement the impression was you w ere
told that Factor VIII was "the miracle cure that wo uld
solve all of our problems".
ANSWER:
Yes.
|
648 | 7 | QUESTION:
Your parents weren't told of risks of infection and
you or they weren't warned to look out for any adve rse
reactions to treatment.
ANSWER:
No, nothing at all.
|
649 | 7 | QUESTION:
You have also I think a recollection of being told by
Dr Hill that the products were sourced from the
United States.
ANSWER:
Yes, I do, yes.
|
650 | 7 | QUESTION:
We can see a list of the products that you received .
Henry, can we have 1387002, please? We can see here
particulars of blood products, batch numbers by mon th
and year, and we won't obviously go through the det ail
of all the batch numbers, but we can see here the v ast
majority of the products that ... |
651 | 7 | QUESTION:
If we just look at the next page as well, please,
Henry, we can see that continuing through 1981,
through the 1980s.
In 1981 you fell ill after you had injected
yourself with Factor VIII. What can you remember
about that?
ANSWER:
Not a great deal, really. This isn't the glandular
fever incident?
|
652 | 7 | QUESTION:
No. You said in your statement you subsequently
learned that you were infected with hepatitis B at
this time.
ANSWER:
Yes. I don't actually remember a lot about that, t o
be honest, other than I was ill and that was it.
|
653 | 7 | QUESTION:
There are in your records, and you have recorded th is
in your statement, positive tests for hepatitis B
surface and core antibodies, May 1981.
ANSWER:
It turned out to be, yes.
|
654 | 7 | QUESTION:
Do you know whether you or your parents were told a t
the time you were being tested for hepatitis B?
ANSWER:
No. I have asked them this question and no.
|
655 | 7 | QUESTION:
Were you told or your parents told that you had, in
fact, tested positive for hepatitis B?
ANSWER:
No.
|
656 | 7 | QUESTION:
So in about early 1984 you fell ill with glandular
fever.
ANSWER:
Yes.
|
657 | 7 | QUESTION:
Can we just have up on screen, please, Henry 138701 0 .
We can see it's a letter from Dr Hill dated
20th January 1984 to you:
"I am sorry to hear that you have glandular fever
and hope that you are beginning to improve. I pres ume
this is why you could not come to my clinic today."
He offers further cli... |
658 | 7 | QUESTION:
The way you have put it in your statement is that t he
GP said that this fever would have been triggered b y
something --
ANSWER:
Uh-huh.
|
659 | 7 | QUESTION:
-- and that there were some things that were above his
knowledge, or words to that effect.
ANSWER:
That's correct, yes.
|
660 | 7 | QUESTION:
With the benefit of hindsight --
ANSWER:
Yes.
|
661 | 7 | QUESTION:
-- you now think that's around the time that you we re
seroconverting.
ANSWER:
Yes, yes, because that just ties in with everything
that we found out. The amount of people who have h ad
glandular fever when they were seroconverting is
almost 100%, so ...
|
662 | 7 | QUESTION:
I think you didn't, in fact, go and see
the Haemophilia Centre.
ANSWER:
I didn't, no. Certainly not Frank Hill, but there you
go.
|
663 | 7 | QUESTION:
In 1984, you married.
ANSWER:
Yes.
|
664 | 7 | QUESTION:
And your former wife will be giving evidence after
you --
ANSWER:
Yes.
|
665 | 7 | QUESTION:
-- this morning. Up to this point, apart from the
illnesses you have described and apart from the
obvious effects of the haemophilia that you have
described, you were leading a busy, normal life?
ANSWER:
Yes, yes.
|
666 | 7 | QUESTION:
Working, good social life.
ANSWER:
Yes, very good.
|
667 | 7 | QUESTION:
Looking forward to marriage.
ANSWER:
Very good, yes. The haemophilia didn't really -- i t
was just one of those things, you know. I just
treated myself when I did and that was it, so ...
|
668 | 7 | QUESTION:
I think you and your partner had bought a house
together.
ANSWER:
Yes, we did, yes.
|
669 | 7 | QUESTION:
At some point in the early part of 1985, you had
a urinary infection and passed out.
ANSWER:
Yes.
|
670 | 7 | QUESTION:
Can you tell us what you remember about that and wh at
happened immediately afterwards?
ANSWER:
Yes. We had only been married about a year, so
[redacted] couldn't drive. My father picked me up.
I was taken to A&E at the Queen Elizabeth Hospital,
the Old Queen Elizabeth Hospital. I was on a troll ey
an... |
671 | 7 | QUESTION:
As I understand it, you are not sure whether he use d
the words HIV or not or HTLV-III.
ANSWER:
No, but I remember the word "AIDS" and "full-blown" .
That's how ...
|
672 | 7 | QUESTION:
Now, there is no record of this in your medical
records.
ANSWER:
Apparently not, no.
|
673 | 7 | QUESTION:
But I think it is right to say that the records you
have got do not appear to be complete in any event.
ANSWER:
No, no, they are not.0
|
674 | 7 | QUESTION:
You don't, I think, have your GP records either.
ANSWER:
No. Mysteriously they vanished in 1985, 1984 or 19 85.
|
675 | 7 | QUESTION:
The only record that we have -- if we have up on
screen, please, Henry, 1387013 -- prior to August 1 985
is the UKHCDO records. We will just look at that
briefly. We can see there it says "Date first
positive: 28th April 1985". That would be
consistent --
ANSWER:
Yes.
|
676 | 7 | QUESTION:
-- with your recollection of being given some
information --
ANSWER:
Yes.
|
677 | 7 | QUESTION:
-- in the way you have described in the first part of
1985.
ANSWER:
Yes.
|
678 | 7 | QUESTION:
But it is right, I should point out, if we go to th e
next page, please, Henry, there is an obvious error on
this page, because it says "Date condition diagnose d:
1st January 1999". You have no idea, I think, wher e
that date comes from.
ANSWER:
No, no.
|
679 | 7 | QUESTION:
So the first reference in your actual medical recor ds
to HTLV-III appears to be August of 1985, 1st
August 1985.
ANSWER:
Yes. 1
|
680 | 7 | QUESTION:
We will just again look at a record in relation to
that. 1387008, please. If we look down the very
bottom of the page, we can see an entry for
[redacted]. It says:
"Married for 1 year. Wife pregnant."
Then it says this:
"HTLV-III status not known."
Then there appears to be a further line under
tha... |
681 | 7 | QUESTION:
So we don't know what that further line might say.
ANSWER:
No, no.
|
682 | 7 | QUESTION:
As I understand your evidence, you and your wife di d
go to see Dr Franklin on 1st August 1985.
ANSWER:
Yes.
|
683 | 7 | QUESTION:
You went to see him in part, at least, because your
wife was pregnant.
ANSWER:
Yes.
|
684 | 7 | QUESTION:
And because you had this information --
ANSWER:
Yes.
|
685 | 7 | QUESTION:
-- from the accident and emergency admission that y ou
might have AIDS.
ANSWER:
Yes, yes.
|
686 | 7 | QUESTION:
And you wanted to talk about that with Dr Franklin.2
ANSWER:
Yes.
|
687 | 7 | QUESTION:
Could we have up on screen, please -- it's a docume nt
with a reference number for the next witness, Henry .
So it is 1388002.
So we can see the date is 1st August 1985, the
date of that entry in your records, the date you we nt
to see Dr Franklin. It is a letter from
Dr Franklin -- we can just about... |
688 | 7 | QUESTION:
It says this:
"This 19-year-old girl who is the wife of
a patient of mine who has severe haemophilia A came
together with her husband to see me today. As you
know, she is 3 to 4 months pregnant and would prefe r
to terminate the pregnancy. Any child of this unio n
would be a haemophilia carrier if fem... |
689 | 7 | QUESTION:
[Redacted] is going to be giving evidence about thi s,
but you were, as you describe in your statement, ve ry
young, very frightened.
ANSWER:
Yes.
|
690 | 7 | QUESTION:
And bombarded with information about the risks of
AIDS.
ANSWER:
Yes.
|
691 | 7 | QUESTION:
And that really continued for the following years.
ANSWER:
Oh, yes, yes.
|
692 | 7 | QUESTION:
You said in your statement that it was around this
time that there was a change, a shift, in the
atmosphere and workings of the Haemophilia Centre.
ANSWER:
Very much so. I didn't go -- after this diagnosis,
I very rarely went to the haemophilia unit, but wha t
was very, very noticeable is you used to go... |
693 | 7 | QUESTION:
It was some ten years later in 1995 that you found out
that you had been infected also with hepatitis C.
ANSWER:
Apparently, yes.
|
694 | 7 | QUESTION:
Again, we will have a document up on screen. It is
1387006. It helps us date this. So it is
31st March 1995. It is from Dr Wilde, who by this
time was your consultant, and it says this:
"[You] attended the clinic this morning requesting
hepatitis C serological testing, having been prompt ed
to do so... |
695 | 7 | QUESTION:
But I think you don't believe this is a correct -- 9
ANSWER:
No, I don't.
|
696 | 7 | QUESTION:
-- record of what triggered testing.
ANSWER:
No. I don't. Anybody in the room that knows me kn ows
that I have little regard for the Haemophilia Socie ty.
I would not have taken -- well, we would not have h ad
any literature come through to us from the Haemophi lia
Society, full stop. If by any chanc... |
697 | 7 | QUESTION:
And you don't know why you weren't called in for
testing in relation to hepatitis C earlier than 199 5.
ANSWER:
No.
|
698 | 7 | QUESTION:
So precisely what triggered the test, it hadn't bee n
done prior to this year?
ANSWER:
I don't know, but I hadn't sanctioned it, if it was .
|
699 | 7 | QUESTION:
And you have said in your statement that having
received the hepatitis C diagnosis, at that time it
was the bottom of your list of things for you to wo rry
about.
ANSWER:
Very much so. I did get on with Dr Wilde, my
haematologist. I went there for the -- I think it was 0
a clinic appoint. It wasn't j... |
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