Unnamed: 0 int64 0 47k | index int64 0 357 | q_a stringlengths 22 51.4k ⌀ |
|---|---|---|
500 | 5 | QUESTION:
Now, you gave that business up during your treatm ent
for the hep c which we will come to shortly but can
you describe the financial impact that the hepatiti s C
has had on you.
ANSWER:
Up until -- all the time I was working I adjusted .
I forced myself. I had to provide for my family.
I had to. I we... |
501 | 5 | QUESTION:
You said:
"My career and earnings potential was on target
for an above average person and I would have been a ble
to provide financial security for myself and my
family, including pension arrangements."
ANSWER:
Exactly, yes.
|
502 | 5 | QUESTION:
"Sadly I can't do this."
ANSWER:
No. What money I managed to save has obviously g one
now, yes.
|
503 | 5 | QUESTION:
You didn't tell your children about your infectio n
until your eldest was about 16.
ANSWER:
Yes.
|
504 | 5 | QUESTION:
Can you tell us why that was?
ANSWER:
Obviously I'd seen it happen to so many other
haemophiliacs. I'd seen the devastation it can cau se,
the trauma throughout the families, the
discrimination, the ignorance of some people and ho w
it can upset -- if it was just me myself I could co pe
with it but I... |
505 | 5 | QUESTION:
You remained quiet because you didn't want your s ons
to be bullied at school?
ANSWER:
Yes, exactly, yes.
|
506 | 5 | QUESTION:
You also tried to shelter your own parents from i t?
ANSWER:
Exactly, yes. My coping mechanism was, well, I p ulled
into myself and thought, "I know the truth. I know
what I can do and what I can't. Why burden anybody
else? Nothing's going to change. It's not going t o
change the past. It's probably... |
507 | 5 | QUESTION:
So you only ever told people who were closest to you
about your infection but then three years ago you m et
your wife and you told her pretty much straight awa y
about your infection?
ANSWER:
Yes.
|
508 | 5 | QUESTION:
What was her reaction?
ANSWER:
Absolutely amazing. I think she said, "I don't k now
how you told me that but it makes absolutely no
difference to me at all, nothing", which amazed me,
amazed me.8
|
509 | 5 | QUESTION:
Before 2012 you were not offered treatment for yo ur
hepatitis C through the NHS?
ANSWER:
No.
|
510 | 5 | QUESTION:
Can you tell us what you were told about this by the
doctors?
ANSWER:
Treatment was mentioned, you know, "Of course, we can
treat your hepatitis C, we can treat your hepatitis C.
Your liver is getting bad. We may have to think
about". But they made it very clear because of my
genotype that the trea... |
511 | 5 | QUESTION:
What did he say to you?
ANSWER:
"I'm amazed you're still walking", was the first thing
he said. He said, "Looking at your results, I'm
amazed your still walling here". He said, "I know
a little bit about the scandal with the haemophilia
thing. Why have you not been treated? I just don' t
understand... |
512 | 5 | QUESTION:
You couldn't join the Gilead trial in the end bec ause
of your liver condition.
ANSWER:
No, I was turned down. Yes, I applied for it. M y
hope was built up, I thought this was it because th ey
were all saying this is the one that's going to cur e
you. I waited about a week and had the phone call and ... |
513 | 5 | QUESTION:
But instead you joined a different six-month tria l.
You can't remember which drugs that involved but yo u
do know that it didn't --
ANSWER:
No. A week later, yeah, the phone rung again. H e
said, "We've found other another trial. Come on do wn
again". So I came on down. They said, "We've foun d
a... |
514 | 5 | QUESTION:
What were the side effects of that treatment?
ANSWER:
It was made perfectly clear to me that this drug
wasn't aimed at the UK market. It was aimed at the2
foreign market, with people with a darker skin beca use
the main side effect was it was photo-sensitivity,
sunburn. You couldn't stand the light. ... |
515 | 5 | QUESTION:
And you did manage to complete the six-month tria l --
ANSWER:
I did three months, with the side effects were --
I say it was designed for people with darker skin.
There's me, a red-haired fair skin; I had no chance .
So literally I couldn't even look out the window. You
had to have factor 50 on indoors... |
516 | 5 | QUESTION:
And you cleared the virus?
ANSWER:
Yes.
|
517 | 5 | QUESTION:
Having cleared the virus, what's your health like now?
ANSWER:
The damage has been done to my health . Obviously , the
cirrhosis doesn't change. My liver's still cirrhot ic,
it hasn't got any worse, and there are signs of
improvement. I feel -- in myself, I feel better no w
than I ever have done but... |
518 | 5 | QUESTION:
Before you started the treatment to clear the vir us,
you went to the GP suffering with depression?
ANSWER:
Yes.
|
519 | 5 | QUESTION:
And you went to see a counsellor?
ANSWER:
Yes.
|
520 | 5 | QUESTION:
I think you say you found that counselling helpfu l to
you.
ANSWER:
I did. This was pure -- I've got an excellent GP ,
totally understanding. He knows me and he knows if
ever I go to see him, I'm in trouble. I don't go
there all the time. And I think I was just after
a routine prescription for paink... |
521 | 5 | QUESTION:
You were also exposed to hepatitis B?
ANSWER:
Yes.4
|
522 | 5 | QUESTION:
And you've received three letters warning you of your
risk of vCJD?
ANSWER:
Yes.
|
523 | 5 | QUESTION:
In your statement, you have explained that two ye ars
ago you wanted to have ankle surgery at the
Royal Surrey Hospital but this was refused because of
the risk of vCJD, and you ultimately had the surger y
at Basingstoke Hospital.
ANSWER:
Yes.
|
524 | 5 | QUESTION:
In a very recent explanation, the Trust have said that
the reason why they couldn't undertake the surgery was
because they received advice from your haemophilia
centre that the surgery should take place there in the
interests of your safety.
Do you still hold to what you believe to have
been the situa... |
525 | 5 | QUESTION:
I want to move on to the issue of financial
assistance. After you saw the private doctor, you
applied to The Skipton Fund and received payments f rom
them?
ANSWER:
Yes.
|
526 | 5 | QUESTION:
And you now receive payments from the EIBSS?
ANSWER:
I do.
|
527 | 5 | QUESTION:
Do you have any particular views or experiences i n 5
relation to the process and nature of the schemes o r
the payments that are made?
ANSWER:
For me, it was all done purely on blood results a nd
scan results and it was just done automatically; so
I had no issues with it. It was done quickly and t he... |
528 | 5 | QUESTION:
You have said that you've got -- you have had no
problems getting payments from The Skipton Fund but
you do think the payments you've received are unfai r?
ANSWER:
I do. It's not -- when you have a family, if the y
just took it as the average UK family, the average UK
wage, the average working man's wag... |
529 | 5 | QUESTION:
Those are the questions I have for you. Is there
anything else you would like to say?
ANSWER:
I think one thing I would like touched upon is
haemophilia treatment, as it stands now, it feels 6
we're penalised for our infections where I feel we
should be being prioritised, rather than penalised.
Whateve... |
530 | 5 | QUESTION:
I am just going to turn my back and ask Mr Snowde n
who, as you know, represents you if there's anythin g
further.
ANSWER:
Sure. (Pause)
|
531 | 5 | QUESTION:
Just one point that Mr Snowden asks me to raise. We
were discussing earlier about the press story break ing
in about 1983 of the link between haemophilia and H IV.
Did the school ever say or suggest at the time
anything about a link between the treatment you wer e
receiving and HIV?
ANSWER:
Not to me... |
532 | 6 | QUESTION:
Prior to the infection that we're going to come o n to
talk about, I think you led a pretty active childho od.
ANSWER:
I did, yes.
|
533 | 6 | QUESTION:
What kind of things did you do?
ANSWER:
So normal boy things, just running around, playin g,
certainly at school I did many sports , even though I was
advised not to, but boys will be boys and so I play ed
football and cricket and volleyball and basketball and
I did expeditions and stuff like that.
|
534 | 6 | QUESTION:
You were under the care of the Hammersmith Hospit al from
the 1960s through to 1984; is that right?
ANSWER:
That's correct, yes.
|
535 | 6 | QUESTION:
Then from 1985 you came under the care of the Roy al Free
Hospital in London under Professor Christine Lee an d her
team there?
ANSWER:
That's correct, yes.
|
536 | 6 | QUESTION:
You regularly received blood products during your
childhood and young adulthood?
ANSWER:
I did. I received cryoprecipitate as a child up until
the '70s.
|
537 | 6 | QUESTION:
I think we can have a look at the record from the
haemophilia database. It's 1212002, please, Paul. If
you go down a couple of pages, please.
We can see, Perry, if you look at the screen look
at the bottom of that first screen, we can see 1969
through to 1971 a record of you receiving
cryoprecipitate?
A... |
538 | 6 | QUESTION:
Then we can see from 1974 onwards and if we look up
through to the 1980s we see you receiving a variety of
different factor products?
ANSWER:
That is correct, yes.
|
539 | 6 | QUESTION:
If we could just leave that on screen for a momen t,
please.
What advice or information, if any, was given as
far as you know to your parents about the risks of any
of these products?
ANSWER:
There was as far as I was aware there was never a ny
advice given associated with the risks to these
products... |
540 | 6 | QUESTION:
What about to you? You turned 18 I think in 1979 or
thereabouts?
ANSWER:
Yes.
|
541 | 6 | QUESTION:
What information or advice was given to you then as
a young adult?
ANSWER:
Again, no advice associated with the risks of the se
products.
|
542 | 6 | QUESTION:
We can see from this record that the type of prod uct
given to you changed from time to time. We'll see
references to Factor VIII (BPL), and then to Factor ate
and then to various other products throughout the 1 980s?
ANSWER:
Yes.
|
543 | 6 | QUESTION:
Do you recall the products being given to you cha nging
at all?
ANSWER:
I do recall seeing different bottles in subsequen t
visits to the hospital. So some bottles might be
thicker and have a different label on or a differen t
colour and maybe the nurse would say "this is Hemof il"
or "this is someth... |
544 | 6 | QUESTION:
Did anyone ever sit down and talk to you or you a nd your
parents about these changes and why one product was
being used rather than another or whether there wer e
different risks associated with different products?
ANSWER:
No, never.
|
545 | 6 | QUESTION:
Could we go on to I think it is letter 13 July, t he same
exhibit, should be roughly page 5. Could we make t hat
a bit bigger.
Perry, if you look at this letter here you will
see it's a letter from a Dr Worsley to your GP?
ANSWER:
Yes.
|
546 | 6 | QUESTION:
Could we highlight the last main paragraph, pleas e. You
will see it says there:
"We have recently been inviting all our
haemophiliacs to visit the clinic as many of them d o not
see a senior haematologist regularly, particularly
people like Perry who has only moderate haemophilia and
does not develo... |
547 | 6 | QUESTION:
Were the contents of that letter ever communicate d to
you at the time that there might be a risk of AIDS in
1983?
ANSWER:
No.
|
548 | 6 | QUESTION:
Could we go to the next page of the exhibit, plea se.
Could you just make that more visible. We have her e an
extract from the UKHCDO haemophilia database and if you
see, Perry, date last negative 10 January 1984, dat e
first positive 10 July 1984.
Is that material the basis for your understanding
th... |
549 | 6 | QUESTION:
That gives the date when last tested negative as
10 January 1984. Do you recall any discussions abo ut
being tested for HIV at that time?
ANSWER:
No.
|
550 | 6 | QUESTION:
Do you recall giving any consent to being tested for HIV
at that time?
ANSWER:
No.
|
551 | 6 | QUESTION:
Do you recall the outcome of any tests being
communicated to you at that time?
ANSWER:
No.
|
552 | 6 | QUESTION:
When was it that you were told that you had teste d
positive?
ANSWER:
I think it was in August '85, if memory serves me right.
|
553 | 6 | QUESTION:
I think you have said in your statement you remem ber
that as a date, you and your wife have remembered t hat
as a date?
ANSWER:
Because it was five years on from that date we
celebrated the fact that I was still alive and we
invited that -- celebrated that with some close fri ends.
|
554 | 6 | QUESTION:
So that was 5 August 1985 is when you recall bein g told
for the first time that you had contracted HIV?
ANSWER:
Yes.
|
555 | 6 | QUESTION:
What can you recall about that communication, tha t
conversation? Who was it with?
ANSWER:
It was with Dr Goldman and a social worker at the Royal
Free. They explained that -- I thought it was just
a routine appointment, so as a haemophiliac we
constantly are in hospital for either treatment or if
w... |
556 | 6 | QUESTION:
That date is, as you say, embedded in your memory
because of the celebrations you and your wife
subsequently had five years later still being alive .
ANSWER:
Yes.
|
557 | 6 | QUESTION:
Could we get up on the screen in the same exhibit
1212002 what I think will be page 8 of the exhibit.
It's a letter from June 1990. That's the one, I'm
sorry, June 1988. If we just look at the first
paragraph, if you could highlight that first paragr aph,
please, it's not terribly easy to read but if we... |
558 | 6 | QUESTION:
You can take that down, thank you.
What prognosis were you given at that meeting in
August 1985?
ANSWER:
I recollect being told that I had -- my life expe ctancy
was going to be two to three years, I think, at tha t
stage and it was unexpected piece of news and also
slightly -- I think there was sligh... |
559 | 6 | QUESTION:
You say in your statement you felt numb, you coul dn't
grasp the news that was being given you.
ANSWER:
Yes. I mean, I come from a sort of an engineerin g
sciences background and you're always -- kind of pa rt of
my training was to kind of look at the evidence of what
you're being told and then, you kn... |
560 | 6 | QUESTION:
Can you remember what, if any, advice or informat ion was
given to you in that meeting?
ANSWER:
I don't believe there was much advice at all beca use
still at that stage it was a prognosis which was fa irly
bleak, so there was no advice because there was not hing
you could do.
|
561 | 6 | QUESTION:
You say you knew presumably from the news about t he
risks from sexual transmission?
ANSWER:
Yes.
|
562 | 6 | QUESTION:
You can't recall whether that was discussed or no t in
that meeting?
ANSWER:
No, I'm pretty sure it wasn't discussed. They ma y well
have known that I was a Christian and that I wouldn 't be
practising sex outside of marriage anyway.
|
563 | 6 | QUESTION:
The way you have described the impact of that
information being given to you in your statement is
this:
"I was left to my own devices to go home and
absorb the information that I would die young. I w ould
suffer and die a horrible and painful death. The
outlook was bleak and terminal."
That pretty mu... |
564 | 6 | QUESTION:
That was 1985. Can we look at a letter from
26 September 1986.
Paul, it is 1212002. I think it should be pages 8
or 9 or thereabouts. That's the one, thank you. C an we
go down to the next page, thank you. Could you
highlight, please, the last paragraph.
This letter, 26 September 1986, says this:
... |
565 | 6 | QUESTION:
If we look at an earlier document in the same exh ibit,
please, Paul -- I think it is the fifth page of the
exhibit, that's it, thank you -- this is November 1 990.
Could we highlight the second paragraph beginning " Many
haemophiliacs", and the paragraph after that as wel l.
So this is a letter which re... |
566 | 6 | QUESTION:
Is that the first you knew that you had what is n ow
referred to as hepatitis C?
ANSWER:
Yes, but at that stage, you know, they hadn't iso lated
the Hep C part so -- so yes.
|
567 | 6 | QUESTION:
That information contained in that 1986 letter th at you
almost certainly had non-A non-B was not shared wit h 1
you?
ANSWER:
No.
|
568 | 6 | QUESTION:
We can take that down, thanks.
Then I think a number of years later, I don't
think we need to look at the documents for the purp oses
of your evidence but in about 2004 you then receive d
information to suggest that you were at risk of vCJ D?
ANSWER:
That's correct, yes. I'd been exposed to it but agai... |
569 | 6 | QUESTION:
We can see, Perry, from the documents that you ha ve
exhibited to your witness statement infected with H IV
probably from infected blood products in the first half
of 1984 but told for the first time in August 1985.
Infected with HCV known to doctors since 1986 as no n-A
non-B but 1990 that you were told... |
570 | 6 | QUESTION:
But without your knowledge; is that right?
ANSWER:
That's correct, yes, and I -- that's just by me g oing
back over my notes and seeing what was written. I mean,
it's not -- maybe I'm slightly ignorant but I didn' t
think it was commonplace to request your notes and go
through them to check to see wha... |
571 | 6 | QUESTION:
Can I ask you that impact then that early diagnos is in
the 1980s had on your personal and family life, so the
HIV diagnosis. Before you met Heather, your wife, what
impact did it have on your relationships and on you r
everyday life?
ANSWER:
So on relationships, it made me think that having
relation... |
572 | 6 | QUESTION:
It does. It answers it beautifully, thank you.
You then met Heather your wife in 1987.
ANSWER:
Yes.
|
573 | 6 | QUESTION:
How did telling Heather happen?
ANSWER:
Well, we'd been -- started going out once. I mea n,
I got to know her through the church that we both w ent
to. The interesting thing was that she was never a t the
church that I went to because her job was doing sch ools
theatre work, so she was in the car all... |
574 | 6 | QUESTION:
What was Heather's response?
ANSWER:
Oh, that's a good one. Well, foolishly I think I said
something like, "It's all right, I'm not going to d ie",
which I don't remember saying but Heather swears th at
I did say this.
I think Heather understood a little of the
enormity of what I was sharing but it ... |
575 | 6 | QUESTION:
You said in your statement, Perry, that when you became
engaged there was, as it were, a common understandi ng
between the two of you that you'd die soon, that th ings
would get nasty and that you wouldn't be able to ha ve
a family.
ANSWER:
That's correct and I -- going back to this point I made
about... |
576 | 6 | QUESTION:
There was an occasion you've described in your st atement
when Heather came with you to the Royal Free --
ANSWER:
Yes.
|
577 | 6 | QUESTION:
-- to meet the consult consultant and the social worker.
ANSWER:
Yes.
|
578 | 6 | QUESTION:
What can you recall about that?
ANSWER:
So, again, it was a meeting just to kind of have
a consultation with the doctors and see how we're 6
getting on and I thought it would be a great opport unity
for Heather to come and go to the Royal Free and se e
what I've had to put up with through all my life a... |
579 | 6 | QUESTION:
You and Heather did marry.
ANSWER:
I think so, yes.
|
580 | 6 | QUESTION:
But your health started to deteriorate in the sen se that
you began to suffer chest infections, pneumonias ni ght
sweats and then you began AZT treatment in
August 1990 --
ANSWER:
Yes.
|
581 | 6 | QUESTION:
-- for the HIV and then interferon in 1992, June 1992,
for the HCV.
How were those treatments?
ANSWER:
So the AZT was horrible. It's just with a lot of HIV
and potentially -- and also HCV drugs that they've used,
7
I always recognised that we were being guinea pigs and
I was very, very happy to ... |
582 | 6 | QUESTION:
By the time you got to 1995, you had to stop work for
a long -- for a while, because of the -- whether it was
the original infection or the consequences of the
treatment, it was simply too much for you?
ANSWER:
Essentially, what's happened was that my T cell c ount
had been at zero for two years so th... |
583 | 6 | QUESTION:
There was a course of anti-retrovirals you descri be as
making you violently sick and you didn't think you would
be able to carry on with them?
ANSWER:
Yes, that was like the first generation of
anti-retrovirals in 1996 I think and there was only
a couple that were around at that stage but the one that ... |
584 | 6 | QUESTION:
Then there came a point I think you were able to go back
to work around 1997?
ANSWER:
Yes.
|
585 | 6 | QUESTION:
Then having believed, you and Heather, for the fi rst
years of your marriage that you wouldn't be able to have 9
children you started to explore the possibility of
having children through sperm washing?
ANSWER:
Correct, yes.
|
586 | 6 | QUESTION:
You described that in your statement as a physica l and
highly emotional journey?
ANSWER:
Yes.
|
587 | 6 | QUESTION:
But your son Isaac who I think is sitting there w ith you
was born in 2001 as a result of that treatment?
ANSWER:
That's correct, yes.
|
588 | 6 | QUESTION:
But August 2002 you had a further diagnosis ?
ANSWER:
I did. I contracted non-Hodgkin's lymphoma which at the
time and it may -- yes, at the time it was directly
related to the HIV virus in as much as it was an
AIDS-defining illness associated with HIV.
|
589 | 6 | QUESTION:
What was the impact of that diagnosis on you and
Heather?
ANSWER:
So that was enormous.
|
590 | 6 | QUESTION:
You were hospitalised for near enough six months .
ANSWER:
Yes, yes. So having trained as a project manager , I was
able to project manage the treatment and the doctor s to
the point where if they came into my room and they
didn't have the answers that I expected, then I wou ld
make them accountable.
... |
591 | 6 | QUESTION:
I think you've put it beautifully in your stateme nt,
Perry, where you say:
"I had survived HIV 17 years from being told I had
it and we found joy in the birth of our son Isaac", and
then you had the devastating news of the cancer and the
need for chemotherapy?
ANSWER:
Yes.
|
592 | 6 | QUESTION:
We've got a picture which you very kindly provide d which
gives an indication of the gruelling nature of the
chemotherapy.
I wonder if we can put it on the screen, please,
Paul. It should be 1212005. That is later on, I'm
sorry. In that case it's the other photo, please.
ANSWER:
I think it should hav... |
593 | 6 | QUESTION:
That's it. That's you at the time that we're tal king
1
about.
ANSWER:
Yes. One of my better-looking photos, Yes, I mea n, it's
typical chemotherapy and, being a haemophiliac,
obviously where the cannula or the Hickman line goe s in
when they pull it out, or whatever they do, it's ni ce
bruising... |
594 | 6 | QUESTION:
You and Heather decided that you would try for an other
child --
ANSWER:
We did.
|
595 | 6 | QUESTION:
-- a little while later and your daughter was bor n in
early 2005.
ANSWER:
Correct, yes.
|
596 | 6 | QUESTION:
One of the things you've told us in your statemen t is
that around this time you appeared in a documentary ?
ANSWER:
I did.
|
597 | 6 | QUESTION:
A BBC documentary called Stephen Fry, HIV and me.
ANSWER:
Yes.
|
598 | 6 | QUESTION:
We're going to show a clip from that with your
permission but can you just tell us, at the time th at
was being filmed can you recall what you had been t old
about your prognosis and life expectancy?
ANSWER:
Yes, I was suffering with not only HIV, chest
infections, pneumonias but also the impact of the ... |
599 | 6 | QUESTION:
We're going to play that if we can, I hope. It's a few
minutes.
(Video played)
ANSWER:
Can I just say that there was some reference to d ates
while I was speaking and I don't think that those d ates
were actually accurate whereas the dates you have a re
accurate.
|
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