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1,400 | 14 | QUESTION:
And this time you successfully cleared the virus?
ANSWER:
Yes, 2004, around November I was told it's been c lear
for quite a while now so, yeah, that was good news.
|
1,401 | 14 | QUESTION:
But unfortunately you continue to feel quite unwe ll?
ANSWER:
Yes. Once the dust had settled and the treatment
stopped, the anxiety and the slowness didn't go awa y,
so from 2004 to today there's been a decline in my
ability to think clearly, to be focused, and my
anxiety levels are always high. I mean, I'm anxiou s
right now but ... it's the silly things, the
irrational things that cause me the most amount of
anxiety and, you know, I'd been lucky enough from
working in a mobile phone shop to getting a good jo b
as a business analyst, project manager, but there's
been a decline and I notice.
I left work last year in March but four years
prior to that there was a decline. I'd go to meeti ngs
with my clients, I'd forget what we spoke about, yo u
know. When I was writing down notes, I would miss
things out and, you know, luckily for me or unlucki ly
maybe, I was made -- the role was made redundant la st
year but it worked out quite well for me because I' d
been with the company for 15 years almost so I got my 5
redundancy and my fears are now all about the futur e.
The past is done, a lot of questions about the
past but I'm more concerned of what lies ahead. Wh at
if I can't get a job that I want? What if this get s
worse, you know?
|
1,402 | 14 | QUESTION:
You had rebuilt your career after that final roun d of
treatment up to a much more senior position?
ANSWER:
Yes.
|
1,403 | 14 | QUESTION:
And then chose after your redundancy not to look for
a job at this stage?
ANSWER:
Yes.
|
1,404 | 14 | QUESTION:
Because you didn't feel you were capable of deali ng
with it?
ANSWER:
Yes and I'm not capable of doing what I was doing .
I can never be a project manager or a business anal yst
again, not while my head is in the shape it is and,
you know, what I'm going to do I have no idea at th is
stage.
|
1,405 | 14 | QUESTION:
You had several liver biopsies?
ANSWER:
Yes.
|
1,406 | 14 | QUESTION:
It's been confirmed that you have cirrhosis of th e
liver.
ANSWER:
Yes, that was confirmed not long after I was
diagnosed. The first liver biopsy pretty much
confirmed that. They wanted to do a couple more fo r 6
some reason, so yeah.
|
1,407 | 14 | QUESTION:
You've said, "I'm no wimp when it comes to pain f rom
procedures but the impact of the pain from the
biopsies was terrible".
ANSWER:
Yeah, it was. The first one set the impression. When
they first -- because you're awake. They use local .
They plunge you, but he missed the liver so he had to
go twice, so after that the agreement, the only way
I would agree to have a liver biopsy is to be put
under general and that's ... it was painful. I can 't
tell you.
|
1,408 | 14 | QUESTION:
You've also had some heart problems?
ANSWER:
Yes. I've got heart problems, diabetes, you know .
|
1,409 | 14 | QUESTION:
Pancreatic enzyme deficiency --
ANSWER:
Deficiency, yes.
|
1,410 | 14 | QUESTION:
-- which means you have to take tablets before yo u
eat?
ANSWER:
Yes. So my food can be broken down and the nutri ents
taken in by the body otherwise the nutrients just a ll
leave the body.
|
1,411 | 14 | QUESTION:
You are not sure whether that's because of the
treatment for hepatitis C or something related to t he
thalassaemia?
ANSWER:
Yeah. It's one of those things where with the
diabetes, the heart and this enzyme deficiency, it' s
7
more than likely thalassaemia, yes, but we don't kn ow.
|
1,412 | 14 | QUESTION:
You say in your statement that the stigma in soci ety
has had a profound impact on you?
ANSWER:
Yes.
|
1,413 | 14 | QUESTION:
Can you tell us what that's meant for you.
ANSWER:
Well, there's different facets of it. First, I'm of
Cypriot origin and if the Cypriot community, so wha t
my parents' community as I call them, have no -- yo u
know, they always look down at a thalassaemic. If you
had a son that wanted to marry a girl with
thalassaemia, no, and vice versa.
To add to that mix you say you've got an
infection, it doesn't matter, you could be cured or
whatever, in that -- that's one level of stigma.
The other stigma I had very bad treatment, or
the way I was handled, by the dental profession.
|
1,414 | 14 | QUESTION:
Can we come to that in a moment?
ANSWER:
Yes.
|
1,415 | 14 | QUESTION:
Just staying with the stigma within the community , you
have said that you didn't speak about your infectio n
with your friends?
ANSWER:
No.
|
1,416 | 14 | QUESTION:
Your parents knew but it became a dirty secret.
ANSWER:
Absolutely, yes.
|
1,417 | 14 | QUESTION:
It's also impacted on your personal relationships . 8
ANSWER:
Yes.
|
1,418 | 14 | QUESTION:
In the 1990s you split up with a long-term girlfr iend?
ANSWER:
Yes, in 1999 I split up with a woman I was with f or
13 years and we were happy, we were in love but she
wanted a family or a commitment from me and because
I never cleared, I was still HCV positive, I said, "No
way. There's no way I'm going to commit to you, st art
a family and die of liver failure".
Looking back with hindsight now, maybe
I shouldn't have done that but that's what we done,
what I done at the time and in 1999 she just had
enough and went her own way.
|
1,419 | 14 | QUESTION:
Your fear at that time wasn't dying of the
thalassaemia?
ANSWER:
No.
|
1,420 | 14 | QUESTION:
It was dying of liver failure?
ANSWER:
Yes, because the thalassaemia is in control. It has
been for many years now.
|
1,421 | 14 | QUESTION:
You've spoken a couple of times about stigma that you
have faced from the medical and dental profession.
ANSWER:
Yes.
|
1,422 | 14 | QUESTION:
In 2011 you decided to have your sperm frozen.
ANSWER:
Yes.
|
1,423 | 14 | QUESTION:
Can you tell us what happened?
ANSWER:
So for safe-keeping I thought I'd have it 9
cryogenically frozen and if I met the right person,
you know -- because thalassaemia also impacts your
reproductive systems and whatever. So I was -- it was
the day of my surgery and the -- basically, the
cryogenics lab in London calls up to say, "I'm sorr y
but we can't store your sperm".
"Why?"
"Because you're HCV positive."
"But I'm not, I've cleared."
"No, we've done your bloods and you've got the
antibodies."
So we all know that you will have the antibodies
pretty much forever but it took several phone calls ,
faxes from my thalassaemic haematology team to the
cryogenics lab, yes, to get them to agree and I fel t
quite small. I felt -- I don't know. I didn't fee l
right. It didn't feel right.
|
1,424 | 14 | QUESTION:
You also had issues with dental treatment.
ANSWER:
Yes.
|
1,425 | 14 | QUESTION:
What can you recall about those issues?
ANSWER:
I was in severe dental pain, so I thought go out and
find a dentist, you'd go into the dentist, because
I wasn't registered with one, and fill in a form,
there's a couple of questions on there, "Have you b een
diagnosed with HIV?" or "Have you been diagnosed wi th 0
hep c?" So, keep it honest, I ticked the hep c. T hey
refused to take me on.
This was a couple more dentists after and then
I had to -- it got to a point where it was an
emergency now.
|
1,426 | 14 | QUESTION:
So before it became an emergency, how many dentis ts do
you think you had been to?
ANSWER:
If I remember it was three or maybe four. Becaus e I'd
walk down the high street where there was three or
four dentists and I tried them all.
|
1,427 | 14 | QUESTION:
And they all declined to treat you?
ANSWER:
Yeah, yeah, for the same reason, and I went to Ki ng's
Cross Dental Hospital. I got a referral and they s aid
to me, "All right, we'll look after you but you hav e
to be the last patient of the day because we need t o
decontaminate everything", and that hurt, you know.
For someone who spent an entire -- whose entire lif e
in and out of hospitals to now be treated so
differently, that was ... that was painful, really.
But it carried on. I mean, eventually there
used to be a hospital off Tottenham Court Road,
a dental hospital, which specialised in HIV patient s,
so I managed to get myself into that dental hospita l
and they were looking after me until one day they s aid
that the funding for hep c has been cut. It's only
1
going to be HIV. I thought fine, my teeth were all
right, you know, you don't worry about it. Maybe
a few years went past and I had another problem wit h
my teeth. Same thing: I could not find a dentist.
Luckily, there was one guy that said he'd treat
me and he's been my dentist ever since.
|
1,428 | 14 | QUESTION:
But even on that second occasion, several years l ater,
again you went in to dentists and they wouldn't tre at
you?
ANSWER:
Absolutely, yeah.
|
1,429 | 14 | QUESTION:
Moving on to financial assistance, you've receive d
payments from The Skipton Fund.
ANSWER:
Yes.
|
1,430 | 14 | QUESTION:
But you weren't even aware that the Caxton Founda tion
existed?
ANSWER:
No.
|
1,431 | 14 | QUESTION:
How did you find out about it in the end?
ANSWER:
A lot of what I've learnt over the years, the pas t few
years, is due to social media, yeah. There's vario us
groups, support groups, out there and they're talki ng
about these things, Caxton and this and that and
I thought ... but I've never pursued it. As far as
I knew I'm getting what I'm getting and that's it.
I was working as well; so, you know, I was happy
with my life. But it's the social media groups tha t 2
highlighted to me to other people who are going hav ing
the same symptoms I'm having now, you know. It's
like, "Oh, that's exactly what I'm going through", so
a lot of my knowledge was sparked off by social med ia
and then Google and away you go.
|
1,432 | 14 | QUESTION:
But initially all you were aware of through your
treating doctors was Skipton?
ANSWER:
Yes.
|
1,433 | 14 | QUESTION:
Those are the questions I have for you. Is there
anything else you would like to say?
ANSWER:
Not a great deal. I mean, I think a question I h ave
is there's what I need cleared up for my own head.
I was, say, diagnosed in the late '80s/maybe '90s,
early '90s. At what point did we, you know, were a ll
the HCV victims diagnosed around the same time or w ere
there earlier because if I was told earlier,
potentially, you know, I might not have had or got the
cirrhosis of my liver and that's important for me t o
know because if I could have been told, for instanc e,
in '82/83, it would have given me a few more years to
try some treatment. It may not have worked
but ... that's what I want to know.
|
1,434 | 14 | QUESTION:
I am just going to turn my back and ask Mr Lock w ho,
as you know, represents you whether he has anything
further. 3
He doesn't have any further questions.
ANSWER:
Okay.
|
1,435 | 14 | QUESTION:
At 2 o'clock we will hear from Mrs C
and of course the live stream will be turned off th is
afternoon.
ANSWER:
Yes.
(12.35 pm)
(Luncheon Adjournment)
|
1,436 | 15 | QUESTION:
And your brother, Des, is the brother that you have
mentioned and he was diagnosed in childhood in the
same way that you were?
ANSWER:
Yes, I think almost at birth he was diagnosed as well,
because my cousin was a wee bit older, so it was in
the family line, as they say.
|
1,437 | 15 | QUESTION:
Now, you started receiving Factor VIII products in
1976, when you were about 10 or 11 years old?
ANSWER:
Yes, I would have been 10. I was 10 at the time.
|
1,438 | 15 | QUESTION:
I am going to ask to have put up on screen, and it
should come up on the screen in front of you, Paul,
a document. Paul, it is 13330004. If you look at
this document, you will see it is dated
15th September 1976, and it refers to you commencin g
home therapy in May 1976, and we can see that in th e
period between May and 6th September of that year y ou
received treatment with Factor VIII products on 19
occasions.
Then, if we look at the third paragraph, we can
see that you were seen again in September, the dosa ge
was recalculated and that you were given more home
therapy treatment in the form of Kryobulin Factor V III
from that point, is that correct?
ANSWER:
Yes, that's correct. As I say, myself, my brothe r and
another guy in the room, we were the first three in
Northern Ireland that started home treatment. So
I transferred from the children's hospital at this
stage, where Dr Bridges was my clinical doctor in
charge, about the age of ten, and we transferred ov er
to Dr Mayne at that stage in the main hospital. We
started home treatment then.
|
1,439 | 15 | QUESTION:
Do you know what, if any, information was provided to
your parents or indeed to you as a child, about any
risks associated with the products?
ANSWER:
Okay. Well, bear in mind I was only ten. I was
probably more interested in Liverpool than I was
haemophilia at that stage. What I recollect, and
obviously my parents would have been told a lot mor e,
was this was a massive jump advantage for us, in th at
we wouldn't have to go into hospital. As a child
I spent a lot of time in the children's hospital, n ot
very good times. I still have flashbacks of memori es
of having to stay in hospital and whatever. So we
were very much tied to the hospital. My mother
wouldn't work. She had everything set up in case w e
had to go to the hospital in a rush, and she worked
with the schools and such like so that I could get
treatment when I needed to. So we were very much t ied
to the hospital.
We couldn't really go on holidays too far away
from a major centre. So we never tried -- never we nt
outside Ireland and that kind of thing.
Home treatment, when it came, was there to open
the doors for us. It was there to lead more
independent lives, to be able to get on with your o wn
life, to be able to treat yourself the minute or ev en
before you would have suspected a bleed, and to
minimise the in-patient stays in the hospital. So,
you know, all the positives were there and there is no
doubt it brought all those positives. I am not awa re
of any risks that was presented at that time.
|
1,440 | 15 | QUESTION:
I should say that Dr Mayne, who was your main treat ing
doctor at this time, and who as you know has provid ed
a witness statement, has said it is unlikely she wo uld
have used the phrase "wonder drug", but you don't k now
who might have used that phrase to your parents?
ANSWER:
No. I think Dr Mayne was the person we talked to at
that stage. So, as I say, it was presented in the
best possible light, but, as I say, I was ten at th e
time, so I can't stand over everything.
|
1,441 | 15 | QUESTION:
Now, as I understand it, you continued to receive
Factor VIII products over the following years and y our
wife's statement has recorded that in the 1980s you
were told at one point that you were the highest bl ood
product user in Northern Ireland?
ANSWER:
Yes. I think around about the mid-80s, you saw w hen
I was only 9 or 10, I was using quite a lot, in the
mid-80s, I went through a particularly difficult
period with elbow bleeds, and I used a lot of Facto r
VIII in that.
|
1,442 | 15 | QUESTION:
Now, your statement reports that at some point in t he
mid-1980s, you have said around 1983/1984, when the
AIDS scare was rife, there was a meeting at the Roy al
Victoria Hospital. What can you recall about that
meeting?
ANSWER:
Okay. So I remember Dr Mayne called a number of us
in. I can't remember, but maybe six or seven peopl e.
I think she maybe took people in in groups and
explained about the AIDS stuff. Most of the
information was coming through The Daily Mail at th at
stage, because there was more in the press than the re
was through the hospitals at that stage, but she
called a group of us in and explained that they now
had a test. So it took a while for a test to even be
developed to check if you had AIDS, from my
recollection, and she brought us in, explained that
they were going to test us for AIDS, and they would
come back to us as soon as they can. I recollect i t
was not a short time-frame, but I think it was mayb e
a month to two months or something like that there
before we were brought back and told the results of
those tests.
|
1,443 | 15 | QUESTION:
In your instance, the result of that test was you w ere
advised you had not contracted HIV?
ANSWER:
That is correct.
|
1,444 | 15 | QUESTION:
Can you recall anything about your reaction to that
meeting and the information that you were being giv en
about this possible risk and the need for blood
testing?
ANSWER:
Okay. So relief, to be honest. The first thing was
relief that I had possibly missed a bullet. I was
glad of that. I was 18/19 at the time. So, you kn ow,
I started university. I was trying to look forward to
life. So to have this weight taken off your should ers
was massive, because there was a lot of stigma
everywhere. We kept it all confidential within the
group. We wouldn't openly discuss it outside a fam ily
group, because there was a stigma, and at that time ,
the 1980s, HIV was related to the gay community, an d
such like, and it was all bad press. There was
absolutely no balance to it. So the fear was -- an d
I have always been personal about my own health, th at
if you went out in public around it, people would
misinterpret stuff. So you had to really keep it - -
you had to internalise it all. So that's what I di d,
but as an 18/19 year-old, it was a relief to move
forward.
|
1,445 | 15 | QUESTION:
Then you continued to attend routine clinic
appointments at the hospital, and in your statement
you have referred to a conversation you had with
Dr Mayne in or around 1987. What can you recall ab out
that?
ANSWER:
Which one is that, referring to the blood product s?
|
1,446 | 15 | QUESTION:
In your statement, Paul, you have said that:
"In or around 1987, whilst attending a routine
clinic appointment, Dr Mayne very casually slipped
into the conversation that I had contracted non-A,
non-B hepatitis."
What can you recall?
ANSWER:
Yes. So obviously I describe these as "clouds". The
clouds came over, and the first cloud was the HIV, and
it blew away. Then you thought "Everything is okay .
Everything is hunky-dory". Then the doctor started
mentioning that there was non-hep A, non-hep B
detected in my blood, and that was it. It was just
slipped in. We didn't know anything about it. The re
was no further explanation. I got the feeling, and
still have that feeling that I really didn't
understand too much at that stage about it, because
the doctors, they gave us no information, because
I don't think they knew enough about it themselves at
that stage. That was my perception at least.
|
1,447 | 15 | QUESTION:
Were you given any information at that stage about any
prognosis or longer term risks or risks of infectin g
others?
ANSWER:
Yes. So we were told -- I am not clear on the
time-frame, because it evolved into, and I joked
about -- they have a creative name for it. It is h ep
C. From non-hep A, non-hep B, it is a hep C. We
joked about it, having a lack of creativity in nami ng
this virus. But what I remember is I was told: "Do n't
worry about it. You have probably had it most of y our
life. It hasn't impacted you and you will not impa ct
anybody else". That stuck in my head, because
Dr Mayne was an excellent doctor. Every patient wi ll
say they have her up on a pedestal. When she tells
you something, it stays in your head. That stuck i n
my head to this day. You know, Dr Mayne told us we 're
safe. There's no risk of transmission, and it
probably wouldn't impact me, because I have had it for
years.
|
1,448 | 15 | QUESTION:
Do you recall another conversation you had -- I don 't
think your statement tells us whether it was with
Dr Mayne or somebody else -- but a conversation abo ut
factor products? You were told there was Factor VI II,
which was safe and clean, and another which was
potentially contaminated?
ANSWER:
Yes, yes. That was scary, and in hindsight even more
scary, because demand was greater than supply for t he
blood products. The conversation was quite open wi th
the doctors around the stuff, and what the doctors
came to, they were continually trying to bring in, as
quick as they could, the heat-treated Factor VIII, and
then following that, later on in years, the
recombinant factor. You can imagine it is a slow
process. These things just don't happen overnight.
At one stage I remember vividly, and I think my
wife was with me at the time, Dr Mayne said: "We ha ve
some products. We have a limited amount of
heat-treated Factor VIII and we have the standard
Factor VIII", for want of a better term, "that is
possibly contaminated, and because you have already
been infected, we are going to continue to give you
the potentially contaminated Factor VIII", because
that was all that was there at the time.
I think, in hindsight, you know, if you think on
it, at the time I know my wife actually thanked the
doctor for that. Now you reflect upon it, maybe we
shouldn't have done that. But, you know, in
hindsight, again what other viruses could they have0
been carrying that we didn't know about it. Obviou sly
CJD evolved in later years. So we were continually
being put at risk with product that was potentially
contaminated.
|
1,449 | 15 | QUESTION:
Just picking up this particular conversation that y ou
recall having with Dr Mayne, Dr Mayne in her statem ent
has said that she told you that you had received
unheat-treated concentrate once in the past, and sh e
then refers in her statement to that batch testing
positive for HIV, but you remaining uninfected, and
would therefore be safe if you ever had to receive
such material again?
ANSWER:
That's news to me. You told me that an hour ago and
that shocks me, because I never heard that in my li fe,
and if I heard that, you would remember that.
|
1,450 | 15 | QUESTION:
You recall the conversation that you have described in
your statement about there being products that were
safe and clean and others which might be contaminat ed,
and you were going to be given potentially
contaminated products, but your recollection is, yo ur
evidence is that you have not previously been told,
until Dr Mayne's statement has been explained to yo u
this morning, that the batch you had received or
a batch you had received had tested positive for HI V?
ANSWER:
No, that's news to me this morning. I always 1
wondered, because we mentioned before about I had
quite a lot of treatment in the peak of this period ,
and I kept saying I was lucky, I missed it. Maybe my
body was smarter than my head. It rejected it. I was
lucky.
|
1,451 | 15 | QUESTION:
You have described this meeting in the mid-1980s wh en
you were told that your blood would be tested for H IV?
ANSWER:
Uh-huh.
|
1,452 | 15 | QUESTION:
And you understood I think that that was the purpos e
of the test that was being done on that occasion?
ANSWER:
Yes.
|
1,453 | 15 | QUESTION:
But you have also said more generally in your witne ss
statement that you believe you were probably tested on
other occasions, without your knowledge and consent .
What is the basis for your belief?
ANSWER:
If you go back to that first letter, you said 197 6, so
I had just started. I can't remember, it was from
Dr Mayne to Dr Bridges, where it states I think in the
very first line that my liver enzymes had been rais ed
and that there would be viruses tested at that stag e.
So I suspect from the minute I started that home
treatment I was being tested for viruses, whatever
those viruses may or may not have been, but again
until I got my notes in the last number of months,
that was news to me.2
|
1,454 | 15 | QUESTION:
Again, it is right I should point out that Dr Mayne in
her statement says that there was no testing for HI V
before the early part of 1985. In terms of testing
for hepatitis C, you have explained that you were t old
by Dr Mayne, first of all, that you had non-A non-B
hepatitis, and some time later it was described to you
as having hepatitis C. Do you recall whether you g ave
consent for your blood to be tested for those virus es?
ANSWER:
No, it was just done. It is routine -- well,
I believe it was routine at the time to look at the
effect on your liver and subsequent viruses, and
whatever. So obviously the medical people knew mor e
than the patients. So they knew what to test for.
History will reveal itself that that was well
documented and known at the time.
|
1,455 | 15 | QUESTION:
You have subsequently learned that you had also bee n
diagnosed with hepatitis B. How did you find that
out?
ANSWER:
I can't recollect strongly. The hep C was much m ore
stronger recollection than the hep B. I think
I remember them saying: "we need to give you
a vaccination for hep B, because you have contracte d
hep B". But again it was just superficial. To thi s
day I have not Googled it. So I don't look into he p
B, whether -- at the time I remember getting some s ort
3
of vaccination, and going through my notes you can see
that I was vaccinated and they mentioned getting
re-vaccinated every five years, but it wasn't
prominent in my mind.
|
1,456 | 15 | QUESTION:
If we look at, please, on the screen, 1333003, plea se.
This is a letter to you. It is only part of a lett er.
It is dated 8th December 2000. Sorry, it is not
a letter to you. It is a letter to your GP.
ANSWER:
That's correct.
|
1,457 | 15 | QUESTION:
If we could just go to the third paragraph, please:
"At present he requires review of his hepatitis
management. He is hepatitis B and C positive."
In your statement you said that you were unaware
that you were hepatitis B positive throughout this
time until you received your medical notes --
ANSWER:
Yes.
|
1,458 | 15 | QUESTION:
-- in the last few months. Is that right?
ANSWER:
Yes. I saw my notes, and just totally unclear ab out
it, because hepatitis B wasn't mentioned, or if it
was, it was superficial. So until I went through
those notes I was not aware. When I read it in the
notes, I said, "I didn't realise I was hep B". The n
I went back into the notes and it mentions I was gi ven
a vaccination. I have a cloudy memory around that hep
B discussion but it wasn't prominent. I have a lot of 4
things that stuck in my mind but that was not one o f
them.
|
1,459 | 15 | QUESTION:
Okay. Now your statement explains that despite the
diagnosis of hepatitis C, you felt for a period of
time remarkably healthy, but that began to change i n
particular when you started, in around 1999, to
receive treatment for the hepatitis?
ANSWER:
That's correct, yes. So I pride myself on -- I w as
pretty -- for a haemophiliac, if I didn't have
haemophilia, the rest of my general health was pret ty
good. I was proud of that fact, and I tried to
maintain my school, I tried to maintain university
attendance. I would rarely try and miss anything.
I would go to school with plasters. I used to have
plasters on my feet. I used to have slings on, but
I still always went to school and university, you
know, I forced myself, and my health was generally
good.
|
1,460 | 15 | QUESTION:
Around 1990, you embarked upon a course of Interfer on
and ribavirin. What, if any, side effects did you
experience from that treatment?
ANSWER:
Okay. That was probably one of the most difficul t
periods in my life. I don't complain. Anyone who
knows me will know I don't complain. I don't openl y
tell people if I am in vast pain. I will lock myse lf 5
in the house and no-one will see me, but this perio d
was very different. I started the treatment and
I started to get very tired, diarrhoea, and what wa s
the other one? A lot of fatigue, diarrhoea, and so rt
of chesty, and not feeling generally well. Very do wn
and depressed and difficult to manage simple things .
So it was very -- I started to lose weight. It was
a very difficult time and just absolutely miserable ,
to be honest, while I was on that treatment.
|
1,461 | 15 | QUESTION:
We could just look at one other document, please,
Paul. It is 1333005. This is a letter dated
25 January, 1999. Again, it is a letter to your GP .
If we could look at the third paragraph, beginning:
"Prior to starting any treatment ..."
It says here:
"I have emphasised to Paul that he is very well.
He is not at risk of infecting anyone, and that the
proposed treatment with alpha Interferon and ribavi rin
is purely protective for the future."
Do you recall what discussions, if any, there were
about whether you should embark upon this treatment ?
ANSWER:
I think we were encouraged to take it. We were t old
there could be not nice side-effects, but that was it,
you know, but the encouragement was: "It's a good i dea
to take it", as it says in that statement, "to prot ect 6
you for the future". They didn't really elaborate on
it, because at that stage, in 1999, and I go back t o
what the doctor told me, that hep C, "You have
probably had it all your life, it hasn't affected y ou,
so therefore don't worry about it". As I say, that is
emblazoned in my memory. So we were given very lit tle
guidance beside: "There is some side-effects but it is
worth giving it a go for the future".
|
1,462 | 15 | QUESTION:
In terms of the side-effects, you have described th e
bowel problems, the diarrhoea in your statement, th at
you became very tired and depressed. You have said in
your statement that your family and friends thought
you had become a completely different person at tha t
time?
ANSWER:
Yes. Yes, I am relatively probably laid back. I used
to be quite laid back. Nothing really agitated me.
I managed my way through life at that stage, just
focusing on going forward in life and doing the rig ht
things. But it changed me. I genuinely think at t hat
stage that changed me. I became very difficult and
probably not the easiest one to live with at the ti me,
because it was difficult.
|
1,463 | 15 | QUESTION:
Again, in your statement, you have explained that y ou
developed eczema. You developed asthma. Your wife 's
statement talks about you becoming yellow, developi ng
7
rashes and losing weight?
ANSWER:
Yes.
|
1,464 | 15 | QUESTION:
Then you were subsequently diagnosed with a conditi on
calmed sarcoidosis. What was that?
ANSWER:
Okay. So that was in 2005. I was very -- a lot of
chest issues, coughing continually, struggling to
breathe, and I went to the GP. So I went to the GP
and he did a test. I remember him testing me.
I can't remember exactly the test. Then I got a ph one
call the next day from the GP to say that he had
red-flagged me to the hospital and that he had
a concern, and I either had a thing called sarcoido sis
or lymphoma, and we needed to get an urgent CT scan
done. He had spoken to the chest consultant. At t his
time -- it is a different city, Altnagelvin in Derr y.
He had spoken to the consultant. He was concerned.
He had red-flagged me. I went and got the CT scan.
It was very efficient. The doctor was excellent.
About a week later I think, between the GP seeing m e
and getting the CT scan, the chest doctor phoned me to
say: "The good news is it's not cancer. It's a thi ng
called sarcoidosis, we believe you've got". So
sarcoidosis is a lung issue where you basically gat her
a lot of blockages, crystals or whatever. I can't
remember the exact detail, but it affects your lung8
breathing. I struggled for maybe six to 12 months at
that stage with breathing issues. Rash was a big
thing. Rash started. The rash and breathing stuff
started on the Interferon treatment, and I have had it
forever since.
|
1,465 | 15 | QUESTION:
Your understanding, as set out in your statement, i s
that there may be a link between the Interferon and
the sarcoidosis?
ANSWER:
Yes. You Google it. Most of us do. There's qui te
a lot of documentation there which links Interferon
with sarcoidosis. Ironically, when I went and got my
notes, there was an exchange of letters between the
haemophilia consultant at the time and the chest
consultant I was seeing up in Derry. I think the
haemophilia doctor was asking the chest doctor what
did she think. Her answer was, "Well, I have no
experience", but she went on to a medical website o r
whatever and produced a document which showed some
linkages there. As I say, the more you look into i t,
there's plenty of linkages there. A friend describ ed
it as: "So you had contaminated blood you were give n
over the years, then you were given a treatment whi ch
then gave you another ailment called sarcoidosis an d
your skin problems, and your diarrhoea and gastro t ype
issues, so just another building block on the way". 9
|
1,466 | 15 | QUESTION:
You put it this way in your statement:
"The treatment was truly horrendous. I felt
floored, nauseous and had no energy."
You were absent from work for a significant
period, you say for the first time in your working
life?
ANSWER:
Yes. I said before, so haemophilia gives you joi nt
problems. It leads to a form of arthritis. It
affects my two ankles and my two elbows. I remembe r
in our work place there's a long pathway, and I use d
to walk it, no matter how sore it was, how painful it
was, and everyone used to overtake me on that path,
but I still made it to work. This floored me. It was
the first time I had any extended time out of work
with this treatment, because it just totally floore d
me. I would get up in the morning and go and sit o n
the settee and within probably five or ten minutes
I was just floored again, and running back and forw ard
to the bathroom and whatever.
|
1,467 | 15 | QUESTION:
What was the reaction that you have described in yo ur
statement of one of the nurses and one of the
registrars when you related your symptoms?
ANSWER:
Okay. That was disappointing. The haemophilia
community is a small community, and the doctors and
nurses outside your immediate family are the next 0
important people in your lives. So I was going dow n
regularly to get blood tests. My white blood cells
were dropping and getting -- I don't know how
critically low. But when I went in and started to
explain to the nurse that I was feeling miserable,
I was losing weight, She told me it was my
imagination. So, you know, that hurt me.
|
1,468 | 15 | QUESTION:
And you have said in your statement that you even
began to doubt your own sanity?
ANSWER:
You know, I went home and I told my wife what was
said. She couldn't believe it, because at that
stage -- somewhere along that period my wife was
admitted to hospital with a twisted bowel, and she had
to get a pretty big operation to sort that out. An d
her doctor at the time -- so the operation was in
Belfast. I live in Derry, which is about a 90 minu te
drive away. So I was going down to see her, trying to
stay at work, and her doctor actually turned round to
my wife and says: "I think I need to discharge you
early because your husband isn't well". So
a relatively strange doctor saw the impact on me ve ry
quickly, and I was disappointed when the haemophili a
Clinic at the time told me it was my imagination. As
I say, anybody who knows me knows I don't complain.
The first words out of my mouth is "How are you? I 'm
5
|
1,469 | 15 | QUESTION:
You still had hepatitis C --
ANSWER:
Yes.
|
1,470 | 15 | QUESTION:
-- having discontinued the treatment, and still had
that when your children were born in 2001?
ANSWER:
That's correct.
|
1,471 | 15 | QUESTION:
How did your knowledge of your infection affect you r
relationship with your children and the care that y ou
provided to your children, Paul?
ANSWER:
Well, over a period of time it became more eviden t
through what you read, what you are self-taught, th at
hepatitis C was a risk. It was a blood risk. In o ur
notes, I think we may even still be classified as
a public health risk, which is not really what you
want to be describing yourself as. But we are very
aware that you can contaminate, despite Dr Mayne's
initial explanation that we couldn't, it was eviden t
at that stage that cross-contamination is possible.
It is a blood borne virus, therefore we had to be v ery
careful. We have twin boys, so you can imagine it is
pretty tiresome managing twin babies. Everything w e
did and every time any of my blood was open or
dropped, we were very clear. My wife was OCD aroun d
cleaning, sterilising, making sure the kids weren't
contaminated. She put herself at risk with no issu es,
but never put the kids at risk. The other issue wa s 6
because I had eczema and skin conditions, I was
bleeding everywhere. Sheets -- still to this day I
get up in the morning and the white sheets are spot ted
with blood quite a lot. That happened. So my bloo d
was always open, and my wife was following me aroun d
the house to protect the kids to make sure everythi ng
was sterilised, that there was no risk in
contaminating the kids at any stage, and that was
a real focus of our lives in bringing up our childr en.
|
1,472 | 15 | QUESTION:
You describe your stance in your statement in this
way:
"I was extremely paranoid that my twins would
become infected" --
ANSWER:
Uh-huh.
|
1,473 | 15 | QUESTION:
-- "... and there was always an air of anxiety, and
procedures involving extreme caution were adopted."
ANSWER:
Absolutely, yes. So you don't -- everything. So
I don't shave -- I use an electric shaver. On very ,
very rare occasions I maybe use a blade, because if
you use a blade, you will cut yourself. So
toothbrushes you had to be careful of. As I say, a ny
time I was taking an injection, the kids were kept
well away, that there was no blood. We have sharp
bins in the house. Needles and all were kept well
away from them. As I say, any time I had any form or 7
cut or open wound of any sort, like any parent, you
want to protect your kids, first and foremost. Bot h
of us did that, as best we could.
|
1,474 | 15 | QUESTION:
Your wife describes in her statement not wanting to
have the children in bed with you for fear of
infecting them, not wanting to touch their dummies or
prepare their food when they were little, again for
fear of infecting them?
ANSWER:
Yes. As I say, particularly at night my skin had skin
problems, whatever. You know yourself, try to get
kids to sleep, you tend to bring them into bed with
you. That was to be avoided with me, because there
was just a fear that they would get contaminated in
some form or fashion.
|
1,475 | 15 | QUESTION:
Now, in around 2011, your current consultant,
Dr Benson, or your then consultant, Dr Benson,
discussed a further course of hepatitis C treatment
with you?
ANSWER:
That's correct.
|
1,476 | 15 | QUESTION:
And you embarked upon that second course of treatme nt
at around that time?
ANSWER:
Yes, I started, yes. Dr Benson was very persuasi ve,
in a nice way. I got the message from him, if I wa s
being honest, so over the intervening years [redact ed]
kept offering me treatment, and I said "I am not 8
prepared to go through it again". Obviously, we we nt
on to have a family. We wanted to have as normal
a life as we could. The bad experience I just coul d
not face again. There was periods of time where th ere
was no consultant in place, and one of the consulta nts
who was there for a short time, she offered me the
treatment, didn't force me, there was no forcing go ing
on, but Dr Benson was quite clear. I got the messa ge
from Dr Benson that going forward, if I wanted to
possibly stay alive, I needed to take the treatment ,
so I did.
|
1,477 | 15 | QUESTION:
This course of treatment you have said in your
statement was also very difficult, but the hospital
was more proactive, and you received great support
from Dr Benson?
ANSWER:
That's correct.
|
1,478 | 15 | QUESTION:
You still experienced side-effects. Is that right?
ANSWER:
Yes. So today I still have skin problems. Asthm a has
appeared somewhere along, after the sarcoidosis,
I have had asthma problems. I have skin problems.
I still have bowel problems. Tiredness comes.
I still suffer from fatigue, you know. I go to wor k.
I do my best at work, I come home and many times
I just sleep after work, sleep at weekends. So
fatigue is still in the background as well.
9
|
1,479 | 15 | QUESTION:
But you stayed the course. You were able to stay t he
course for this second course of treatment, and wha t
was the outcome of it?
ANSWER:
So I cleared hep C. Again, the difficult part of this
one was -- so I cleared it. I cleared it -- so it
went on for 48 weeks. As I say, the day I started it,
my mother had dementia. As I say, I live in Derry and
Belfast is about 90 minutes away. Literally the
evening of my first injection, I got a phone call f rom
the Royal Victoria Hospital to ask me to come down and
mind my mother, and that was difficult, because, as
I say, she had dementia. She was brought into
hospital and she tried to escape from hospital. Wh en
I arrived -- so I had a dilemma. Did I give myself
this injection, because it was a big build-up to st art
on this treatment, so not easy, and literally -- we
remember it well, my wife and I -- at 7 o'clock we got
a phone call to say: "We need your help to mind you r
mother". I said: "I am supposed to start this
treatment. Should I stop it? Should I not start i t?"
I phoned my brother at the time, and we debated
what to do. I started the treatment. I injected
myself and went down to the hospital. As I say, my
mother was being minded by bouncers, for want of
a better description, in the hospital, because she was 0
trying to escape. Her mind had wandered. She thre w
me a right hook, and anyone who knows my relationsh ip
between me and my mother ... Yes. So ...
|
1,480 | 15 | QUESTION:
In terms of your health since then, since the
treatment concluded and the hepatitis C virus was
cleared --
ANSWER:
Yes.
|
1,481 | 15 | QUESTION:
-- what's the position in terms of your current
health?
ANSWER:
Well, I still have a lot of skin problems, diarrh oea
problems and the tiredness. The blood results look
okay, touch wood. The basic blood pictures. I go to
hospital. I am a severe haemophiliac. I do go eve ry
three to four months. I have done my whole life. So
I see the hospital a lot. I see it regularly. So my
blood results are currently good. But what concern ed
me around that is that my brother, he was three yea rs
older than myself, so after university he went to
England to work. So he was treated under St Thomas '.
My brother also had severe haemophilia, had hep C,
went through treatment and cleared it. But
unfortunately, in 2014, he died very suddenly. He got
very unwell within a matter of weeks. He went into
hospital on a Friday. They struggled to diagnose w hat
was going on. They debated whether to do a liver 1
biopsy, because it is very risky for haemophiliacs,
but they got to the stage where he was going downhi ll
very fast. I got a phone call on the Wednesday to say
he had a form of cancer, but it was treatable, and was
going to go to a different hospital in London for
care.
On Thursday night, that changed dramatically to
say that further results came back and he had
a different form of cancer than they thought
initially, and that he was being sent to palliative
care, and he died that night, within a short period of
time.
So my real concern here is that, you know, he
looked good, his blood results looked good, but wit hin
a matter of weeks he died. He died. He had cancer in
the liver and the stomach and, you know, some of th ose
can be related to the hep C. So that's my concern.
So he never had a thing called fibroscans. We
have never had fibroscans here. We were totally
unaware of them until maybe six months ago, when so me
of the Infected Blood Inquiry people were discussin g
about getting these scans.
|
1,482 | 15 | QUESTION:
What is the position in relation to you having or
being offered a fibroscan, Paul?
ANSWER:
I have never been offered a fibroscan. In Novemb er -- 2
after previous experience with doctors, albeit with
brilliant experience with Dr Benson, my wife goes t o
all the appointments with me. We openly discussed --
we had heard about others in Northern Ireland getti ng
fibroscans. Why weren't we getting fibroscans,
because we carried a virus for 25 years. We cleare d
it. In all the material you read there is
a possibility that your blood results can be fine, but
there can still be underlying cirrhosis or scarring of
the liver, and next to the biopsy the fibroscan is the
best thing. So I never had it.
So in November I asked my consultant could I get
a fibroscan, based on what I had learned. He agree d.
He said: "I agree. I think you should," especially
based on my brother's history. He said he would
contact the Royal Victoria Liver Unit, and apparent ly
there is one fibroscan unit in Northern Ireland. N o
word. He did e-mail me about December or January t ime
and kept me communicated. He said "Still no word".
They agreed they would give me a scan, but still no
scan. I saw that Mr Gary Benson about two weeks ag o.
I said: "Look, Gary, I have still no scan". He sa id:
"They've agreed to do it". Friday last the
appointment arrived. I have a scan next week.
|
1,483 | 15 | QUESTION:
Your fear or one of your fears that you describe in
3
your witness statement that you live with is that
although your second course of treatment cleared th e
virus, and in particular because of what happened t o
your brother, Des, your fear is that your liver may be
damaged and that you may develop cancer in the same
way that your brother did?
ANSWER:
Yes. It's an unknown. As I say, my whole life, if
you think of the decades of life, we started with
haemophilia, and that was a cloud, and you managed to
treat it. Then AIDS came along. You treated it. CJD
came along, that was another cloud. And then the h ep
C was a major cloud, and we have moved on. But
there's still clouds coming and there's still a lot of
unknowns. It's a fear and it will live with me. D eep
down, I remember saying to my wife my first objecti ve
in life was to outlive my brother. So he died at 5 1.
|
1,484 | 15 | QUESTION:
You have just mentioned CJD, Paul?
ANSWER:
Yes.
|
1,485 | 15 | QUESTION:
You have referred to that in your statement. Could we
have up on screen, please, 1333007. This is a lett er
that you received in February 2001. If we look at the
third paragraph, you were informed in February 2001
that you were not exposed to any of the affected
batches in question.
ANSWER:
Yes, that's correct. This letter came out of the blue 4
arrived at the house, and obviously again the media
was informing me of a lot of stuff, and CJD was
prominent in the media. This letter, we never thou ght
about it, came but, it was good. It clearly said:
"You were not exposed to affected batches ..."
There was no worry there. I was happy with that.
|
1,486 | 15 | QUESTION:
Then, if we have up on screen, please, 1333006, we
will see this is a letter dated 20 September, 2004.
ANSWER:
Uh-huh.
|
1,487 | 15 | QUESTION:
We can see, in the second paragraph, it refers to t he
receipt of clotting factor concentrates between 198 0
and 2001. Then it says, in the third paragraph:
"This tells you that as a public health measure
(to protect people from the very small risk of
developing vCJD through blood or organ donations, o r
through reusing contaminated surgical or medical
instruments during certain procedures) you are bein g
asked:
"Not to donate blood, organs or semen, eggs.
"To inform all healthcare professionals who treat
you about the possible need to use disposable
instruments."
Then, if we just have the next paragraphs, two
paragraphs further down, you see it says:
"As you will see from the enclosed, we are 5
offering to see any of our patients ... who wish to
discuss their own situation, including whether or n ot
they received any such batches."
So having been told in 2001 you had not received
any of the affected batches, what was your reaction on
receiving this letter, some three years later?
ANSWER:
Angry. So it arrived at the house. My wife -- a s
I say, we had twin boys -- my wife was literally
sitting feeding the kids at the table. This letter
came and she opened it up. Bear in mind, the one i n
2001 said "You are not exposed". This letter -- wh en
you get a letter like this: "if you want to know
whether you have been exposed to CJD, please tick
a box".
The first reaction is the previous one said we
were not exposed, so you must have been exposed. S o
immediately we were scared. We were frightened. A ll
of a sudden we had a family. We didn't just have
ourselves to look after. We had a family. You kno w,
that becomes more important. We got this letter, a nd
our immediate reaction was "he's been exposed".
Really angry at the way it was done, to say "If you
want to know". So basically the hospital knew that
I was not, as it turned out, I was not exposed, but
yet they sent us a letter which frightened you, whi ch 6
indicated -- to me any reasonable person reading it ,
the probability here is you have been exposed. So to
me this was a shocking letter. It was a shocking
process of how we were communicated, and we
immediately made an appointment.
Rita, my wife, phoned her family and asked could
they mind the kids, that we were coming down to
Belfast. She broke down over the phone. I came ou t
of work. We went straight down to Belfast, and peo ple
minded the kids. We had the discussion with the
doctor at the time. She said: "Well, if you want t o
know" -- it seemed very dramatic. She went into
a safe, into the back office, and came out to say:
"You haven't been exposed". So at that stage we ha d
a very strong discussion about how inappropriate an d
wrong this process was, because, you know, at the e nd
of the day anyone with any form of medical illnesse s,
or contact, people go for breast scans, they go for
other cancer scans, and they are not told. But: "W e
know, we, the doctors know, but we are not going to
tell you unless you tick a box and come down and as k
to be told". So we had a heated discussion about t he
appropriateness of this letter and the only rationa le,
which to this day I can't accept, is it was to prot ect
those who were exposed.
7
What reinforces me it is such a wrong process is
that in recent months we have met people who
unfortunately were exposed. You talk to those peop le
who have been exposed and they live every day, ever y
night in fear. If they have a cough, they feel
unwell, in any form, they think "Is this CJD coming
upon me?"
I didn't need to be exposed to that, because the
doctors knew that I was clear, yet they sent a lett er
out in this process to simply scare you. To tick
a box and arrange an appointment. I am glad we
didn't. We did the right thing. We just phoned up :
"We're coming now. You have to see us this
afternoon". That obviously relieved us quite a lot ,
but I get very, very angry at this process, because it
is shocking.
I think it was a national process. Again we were
told that a group of doctors had been deciding for
months on how to tell us or how to handle this.
I said: "So you knew for months and then you still
sent out this letter?" I just -- it beggars belief ,
in my eyes.
|
1,488 | 15 | QUESTION:
I just want to ask you a few questions about the
impact more generally that your infection has had u pon
you. You have described the impact upon your physi cal 8
health.
ANSWER:
Yes.
|
1,489 | 15 | QUESTION:
You have described the impact upon your family life .
How has it impacted upon your relationship with you r
wife?
ANSWER:
In many ways it strengthens your relationship. W hen
you go through difficulties, you know, you get clos er
and closer, but it is difficult. We have been expo sed
to one -- most people in life will not face one of
these issues, you know, and I am no different from
a lot of people in this room. We are continually
exposed to major life-threatening events and it is
continual. The whole of my life, as I say, I go by
decade. That's how I remember things. I have a we e
prompt card of dates. It is decade by decade. I h ave
no choice in the matter. My wife unfortunately sig ned
up for it when she married me. It is difficult. W e
both have to manage. It messes with your head. Al l
these things mess with your head. So we have to
manage that on a day in -- and you are trying to le ad
a normal life. We think we lead a normal life, but
when you talk to people, they realise "That's not
normal", but for us it is normal, so to say.
|
1,490 | 15 | QUESTION:
What has the impact been on your employment and on
your career, in terms of choices that you have made ? 9
ANSWER:
Okay. So I have been very fortunate with my empl oyer.
They have been very good. I am a senior manager in
a local and a global manufacturing company, and the y
have allowed me the time off when I have needed it,
and I am very grateful for that. I went pretty fas t.
I was quite successful at quite a young age. I bec ame
a technical team manager at a very young age. I go t
more and more senior roles on site. But it came to
a point where I have outgrown where I am, but in th e
normal role of progression, for someone like myself ,
when you around 40, you probably transfer to bigger
roles off-site, maybe more global roles, and you ar e
given a choice. So at that stage I had to say "No,
I have to step out of this process because ... "
Well, I didn't tell my employers too much. I just
said: "Look, I have to step out of this. I know th at
with my health I could not be travelling round the
world, moving round the world".
So it sort of essentially stopped my career at
that stage. Although it is very good and I enjoy m y
work, and I have good workmates, probably I haven't
got a promotion since -- I got numerous promotions,
but up until the age of mid 30s when I had to step out
of that career ladder, I probably haven't had
promotion for 16 years. But my company has been ve ry 0
good to me. They have helped me go through these
difficult periods. As I say, I do my best. It doe s
impact you.
Another difficult experience was when we were
going through the second round of Interferon. Beca use
of the arthritis, I have limps. I have two ankles and
dodgy -- I need surgery, but at that stage, when yo ur
head was trying to cope with Interferon -- there wa s
a picture of myself in the local club with the
newspaper. I try to help out with sports jerseys a nd
that kind of stuff. There was a picture in it. We
got a card mocking my limp, and that really impacte d
my wife tremendously, because I was going through t his
treatment and other people would see it, and
unfortunately I was getting this letter to the hous e,
which was shocking. But what it did, you know, it
reinforced the fact you have to be so private about
your health.
This is a major decision for me here. It is the
first time I have told my story publicly, and that has
been massive. I have worked with people, good peop le
for 30 years, and most of them don't know this, onl y
a couple of my very close friends and my sister and my
wife would know this, half of our story. For me th is
is a major, major decision to tell your story in
1
public, and more importantly put your kids at risk of
getting mocked. I don't mind. I can handle it if
people want to mock me, but when they mock or it
affects your family it becomes a different story.
So in my work place, as I say, I have had to step
out of that career ladder. I try to keep very, ver y
private, because we live in a small city. I don't
want my kids affected.
|
1,491 | 15 | QUESTION:
One of the financial impacts you have described, as
well as the impact of not taking up the promotions
that you might otherwise have wanted to do, is you
have not been able to obtain critical life insuranc e,
and you have paid higher insurance premiums as
a result.
ANSWER:
Yes. That's par for the course. I think there i s
more rejection letters in my notes from insurance
companies. Obviously, first of all, AIDS is a red
flag. Then the HCV, hepatitis becomes a red flag a nd
CJD becomes a red flag. So insurance companies don 't
like haemophiliacs.
|
1,492 | 15 | QUESTION:
What has the impact of your infections or any
perceived public health risk been on practical thin gs
like dental treatment or other forms of medical
treatment?
ANSWER:
Okay. So I think dentists are sadists. I will g et 2
that out upfront. So we had dentists. I went
through -- we always have to attend the hospital
dentist, and I had one dentist for the majority of my
life, maybe 30 years. Because I bled, because of
haemophilia, his treatment approach was, when I had to
get an extraction or I had to get fillings or
whatever, there was no freezing. So I remember
going -- my wife laughs. We laugh at it, but I sai d
the only time I get nervous in hospital is sitting
outside and holding on sweating before you go into
a dentist, because any treatment was done without a ny
freezing or whatever, so that drill looked massive
when it came towards you. That was the initial
treatment.
When the hepatitis C and CJD became on the agenda,
it changed dramatically. I noticed in some of the
previous Inquiry discussions in England they talk
about the dentist coming in a space suit. In North ern
Ireland they came in a bomb disposal suit. That's how
I described it. They were dressed from head to toe .
Every piece of equipment was covered. We were alwa ys
the last appointment. I understand, you know, you are
a public health risk. That's what we have been
labeled. I understand that, but it messes with you r
head. It definitely messes with your head. But, i n 3
fairness, we have good -- we have dentists. The
current doctor -- there was a period of time dentis ts
wouldn't touch us, because for CJD they had to bury
the instruments after they were used with you. The re
was a period where: "No, we are not even looking it
up. You won't get an appointment". We didn't get
an appointment. Maybe as emotion disappeared and f act
overtook, over the years, doctors now has us on
a regular clinic, and we are being seen by the
hospital without the bomb disposal unit. Still the
last appointment, but without the bomb disposal stu ff.
|
1,493 | 15 | QUESTION:
You have also described in your statement how, when
you required gastroenterology care, and a biopsy
procedure, again you had to go into isolation --
ANSWER:
Yes.
|
1,494 | 15 | QUESTION:
-- for the purposes of that procedure, because of t he
hepatitis C infection?
ANSWER:
Yes. So part of the investigation as to why -- w e
have never got to the bottom of my gastro issues, b ut
I did a blood test and it indicated that I was
Coeliac, but the follow-up to that is to do a biops y.
Normally people go in for an afternoon procedure,
whatever it is, I don't know, but I had to go in th e
night before to our local hospital. I was shocked,
because I was brought into -- I had never been in a n 4
isolation unit in my life. I felt relatively well,
except for these ailments, but I was put into
an isolation ward, which was bleak and scary, and I
never saw anybody until the next day, you know. So my
wife came and that was it. We sat and we actually
looked out the hospital window. I could see my hou se
about half a mile away, but I was locked in there. It
felt unclean. That's the way you were treated.
I understand that, you know, you don't want
contamination, whatever, but it's not a nice feelin g
being put into isolation units.
|
1,495 | 15 | QUESTION:
Have you ever been offered any form of psychiatric
support, or therapy or counselling, in relation to any
of the issues associated with your infection?
ANSWER:
Only now, because the Inquiry has opened up, last week
we were offered by the haemophilia clinic, or two
weeks ago counselling, and my local GP -- I had
probably a difficult period over a year ago, or it
started over a year ago. I had meetings with socia l
workers, been very good in the haemophiliac unit. I
went to my GP, and he offered. That's probably onl y
in the last 12 months. Before that, never.
|
1,496 | 15 | QUESTION:
Paul, can I just ask you a little about your
experience in asking for or applying for financial
assistance. You were told at some point by the Roy al
5
Victoria Hospital about the Skipton Fund. It was t hem
who drew it to your attention?
ANSWER:
Yes. I knew nothing about it until Dr Benson tol d us
about it.
|
1,497 | 15 | QUESTION:
You have received a stage one payment but were not
entitled to the stage two payment?
ANSWER:
That's correct.
|
1,498 | 15 | QUESTION:
And you now have the Northern Ireland Regional
Business Services Organisation scheme. What has yo ur
experience, if any, been in relation to the new
scheme?
ANSWER:
It disappoints me, because in my mind there is no thing
more unfair than treating equal people unequally, a nd
within Northern Ireland we are being treated
differently from other parts of the UK. So there i s
no special category mechanism that is in England.
I don't know what's -- Wales has come out with thei r
different proposals. Scotland have their different
proposals. Northern Ireland -- if you go on to the
English website, there is quite a lot of reasonable
information about what you are entitled to. If you go
on the Northern Ireland site, you'll see nothing.
Again, the scheme that's proposed here, in fairness ,
the guys who manage it have been clear and consiste nt,
but it is very different from what you've got 6
elsewhere in the devolved nations. So again we are
being treated differently to everybody else, and
I think that's not right.
|
1,499 | 15 | QUESTION:
Paul, those are the questions I have to ask you.
ANSWER:
Okay.
|
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