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2,300 | 24 | QUESTION:
Could we have document 0198002, please. If we look at
the second paragraph, this is a letter from 1984 fr om
Dr Mayne to another of your doctors. It says:
"To keep the records straight, a mild haemophiliac
of this type should be treated with cryoprecipitate or
NHS Factor VIII and not commercial freeze dried Fac tor
VIII concentrates. This precaution is to avoid the
development of non-A non-B hepatitis in mildly
affected patients."
Were you aware of this letter or the contents of
it?
ANSWER:
No.
|
2,301 | 24 | QUESTION:
In about March 1985, when you were about 17, your
appendix perforated?
ANSWER:
Yes.
|
2,302 | 24 | QUESTION:
Can you tell us what happened?
ANSWER:
Because it perforated and it was too much of
an emergency case to take me from where I lived to
Belfast, so they admitted me to the local hospital for
emergency procedure.
|
2,303 | 24 | QUESTION:
I think you are going to need to keep your voice up
a little bit.
ANSWER:
Sorry.
|
2,304 | 24 | QUESTION:
Or come forward to the microphone. I am picking up
that people maybe can't hear you. So you had
emergency surgery, and at that time were you given
Factor VIII?
ANSWER:
Yes.
|
2,305 | 24 | QUESTION:
When you were given that Factor VIII, before and af ter
the operation, were your parents or you warned abou t
any risks involved?
ANSWER:
No.
|
2,306 | 24 | QUESTION:
You carried on using Factor VIII as and when it was
required?
ANSWER:
That's correct.
|
2,307 | 24 | QUESTION:
And in 1992 you attended one of your six-monthly
check-ups?
ANSWER:
Yes.
|
2,308 | 24 | QUESTION:
Do you remember what you were told at that
appointment?
ANSWER:
No.
|
2,309 | 24 | QUESTION:
You were told there had been a situation in England
for haemophiliacs?
ANSWER:
Yes, sorry. Yes.
|
2,310 | 24 | QUESTION:
And that a patient with haemophilia had received
contaminated blood products and been infected with HIV
as a result?
ANSWER:
Yes.
|
2,311 | 24 | QUESTION:
You asked if you could then -- you were asked to be
tested at that point?
ANSWER:
Yes.
|
2,312 | 24 | QUESTION:
And I think your mother requested your test results ?
ANSWER:
She did.
|
2,313 | 24 | QUESTION:
And what happened?
ANSWER:
She enquired with them in a phone call to see if she
could get them, but they wouldn't release that
information over the phone.
|
2,314 | 24 | QUESTION:
And so you went up to the hospital?
ANSWER:
Yes.
|
2,315 | 24 | QUESTION:
With the woman who is now your wife?
ANSWER:
Yes.
|
2,316 | 24 | QUESTION:
And what was said at that appointment?
ANSWER:
We were just told the tests were carried out and I was
glad to inform me that the HIV virus that I hadn't
got. And there was also another virus detected cal led
hepatitis C, and it was nothing to worry about. "G o
on with your life, live as normal and it will give you
no bother."
|
2,317 | 24 | QUESTION:
That appointment happened in 1992?
ANSWER:
Yes.
|
2,318 | 24 | QUESTION:
And your wife is clear that it was 1992, isn't she?
ANSWER:
Yes.
|
2,319 | 24 | QUESTION:
Can you tell us why she is so clear?
ANSWER:
Why? We got engaged in 1991 , and we were married in
'93 and we were told that in between.
|
2,320 | 24 | QUESTION:
Could we have document 0198003, please, and the mai n
paragraph? This is a letter from April 1992 and it
says that you were worried about your tests for vir al
infection:
"Apparently he was seen by some of the junior
staff who omitted to let him know the negative resu lts
of these. I have let him see all his results and h e
is happy to discover that there is no problem at th e
present time."
Is that what you understood you were being told?
ANSWER:
No.
|
2,321 | 24 | QUESTION:
Then, when we look at 0198004, we can see at the to p
this is a letter from April 1999, and if we look at
the final paragraph:
"I indicated to 'you' that you had hepatitis C
approximately four years ago", which would put it a t
1995. Again, what is your response to the suggesti on
that you were told about hepatitis C in 1995?
ANSWER:
No, definitely not, because we were so clear it w as
'92, hence we were told just before we were getting
married.
|
2,322 | 24 | QUESTION:
And then 0198005, and if we look at the middle
paragraph, it is recorded, this time in 2002, that
your liver function tests were noted to be abnormal
since 1984. Were you aware before 1992 that your
liver function tests were abnormal?
ANSWER:
No.
|
2,323 | 24 | QUESTION:
Your recollection is the first time you were told
about the hepatitis C was 1992?
ANSWER:
Yes.
|
2,324 | 24 | QUESTION:
And you were told that it wouldn't really affect yo ur
life?
ANSWER:
No.
|
2,325 | 24 | QUESTION:
I should say that Dr Mayne has been invited to prov ide
a response, and that will be published once it is
available.
ANSWER:
Okay.
|
2,326 | 24 | QUESTION:
When you were told you had hepatitis C, were you
advised of any of the risks of transmitting it?
ANSWER:
No.
|
2,327 | 24 | QUESTION:
What do you feel you should have been told?
ANSWER:
In hindsight now, from what we know of the diseas e,
everything that should have been told.
|
2,328 | 24 | QUESTION:
At the time you didn't really ask anything?
ANSWER:
Not really, because the biggest scare was HIV. W hen
you were told you hadn't got that, from the amount of
factor you received over the appendix operation, yo u
just left very happy, and with Dr Mayne's own words
that the hepatitis C virus was nothing to be concer ned
about.
|
2,329 | 24 | QUESTION:
You walked away from what you have said was
a relatively short conversation?
ANSWER:
Yes.
|
2,330 | 24 | QUESTION:
You didn't particularly ask any further questions?
ANSWER:
No.
|
2,331 | 24 | QUESTION:
But the woman who is now your wife did not quite
respond in that way, did she? How did your wife
respond?
ANSWER:
She went very quiet, didn't give me an explanatio n
why, but herself would be a thinker, as a health
professional, so I take it her mind was working
overtime.
|
2,332 | 24 | QUESTION:
And you picked up she was worried about something?
ANSWER:
Yes.
|
2,333 | 24 | QUESTION:
In hindsight, you have said, looking back now:
"I think I was a fool to have not asked
anything."?
ANSWER:
Yes.
|
2,334 | 24 | QUESTION:
And what you would have liked to have been told is the
risks of transmission?
ANSWER:
Yes.
|
2,335 | 24 | QUESTION:
But also the impact on -- how you could have change d
your lifestyle?
ANSWER:
Yes.
|
2,336 | 24 | QUESTION:
Because once you knew there was some impact, what d id
you do?
ANSWER:
I ceased drinking alcohol. I stopped eating red meat,
because we were told then that red meat makes your
liver work twice as hard to break it down, to diges t
it. So I abstained from alcohol, changed my diet a nd
tried to be good.
|
2,337 | 24 | QUESTION:
And in trying to be good --
ANSWER:
Yes.
|
2,338 | 24 | QUESTION:
-- you feel you should have been told that --
ANSWER:
Oh, Yes. Uh-huh.
|
2,339 | 24 | QUESTION:
-- in 1992, so you could make those changes then?
ANSWER:
Yes.
|
2,340 | 24 | QUESTION:
In 2004, you had some abnormal liver function tests ?
ANSWER:
Yes.
|
2,341 | 24 | QUESTION:
Do you remember what you were told?
ANSWER:
I just went because I was feeling unwell, tiredne ss.
Couldn't explain it. Had a sick child previous bef ore
that, he was born premature. We put it down to the
stress of himself. Went to the hospital and went a nd
said to them, so they done the tests then, and then
they came back then to say that my LFTs were raised .
|
2,342 | 24 | QUESTION:
Because at the time you have said your child was ve ry
unwell?0
ANSWER:
Yes.
|
2,343 | 24 | QUESTION:
So initially you thought it was just the stress of
dealing with that?
ANSWER:
Yes.
|
2,344 | 24 | QUESTION:
But I think you have described it as a very differe nt
kind of tired?
ANSWER:
Yes.
|
2,345 | 24 | QUESTION:
Can you give us any more explanation of how it felt ?
ANSWER:
How it felt? Lethargic wouldn't be the word. It
would just be an uncontrollable tiredness. You had no
energy. An every day task was so difficult to do.
I was still trying to work full-time, but it was
getting more difficult to work full-time, even to
concentrate. Just general feeling then of pain
started to appear. I couldn't put it down to havin g
bleeds, as a haemophiliac. It was just completely
different.
|
2,346 | 24 | QUESTION:
You said you also were sweating profusely?
ANSWER:
Yes.
|
2,347 | 24 | QUESTION:
And feeling very nauseated?
ANSWER:
Yes.
|
2,348 | 24 | QUESTION:
So what happened next, in 2004?
ANSWER:
I'm sorry, I just can't recollect it.
|
2,349 | 24 | QUESTION:
Don't worry. I know you are struggling with brain fog
and we will take it nice and slowly. You then went on 1
to the first course of treatment for your hepatitis C?
ANSWER:
Yes.
|
2,350 | 24 | QUESTION:
You volunteered very quickly?
ANSWER:
I did, yes, once I found out what it was, yes.
|
2,351 | 24 | QUESTION:
And you think you were probably one of the first
people in Belfast to go?
ANSWER:
Yes, through the Haemophilia Centre, yes.
|
2,352 | 24 | QUESTION:
Do you remember what your experience of that first
course of treatment was?
ANSWER:
Awful. I suppose the first 12 weeks I couldn't w ork.
Just confined. I always took the injection on
a Monday night. Tuesday and Wednesday just was a c ase
of you could write it off as two days in the week.
The reason for that, as the week progressed, I trie d
to be some way normal at the weekends, when the two
boys were off school, to have some type of normalit y,
but, you know, the experience of the side-effects o f
it is just awful.
|
2,353 | 24 | QUESTION:
You have said that the treatment itself was difficu lt
and debilitating:
"I suffered severe physical side-effects. I was
constantly nauseated."
ANSWER:
Yes.
|
2,354 | 24 | QUESTION:
"and I mean constantly."
ANSWER:
Yes. you had loss of hair. You had anxiety.2
Depression set in, which I have never ever experien ced
before. The darkest days were always Tuesday and
Wednesday. I suppose the first six months you thou ght
of it and you got on with it, but there was times t hat
you just thought "I could be in a better place". I t
would be easier just to walk away or do something y ou
didn't want to do to yourself, or even having that
thought to do it.
|
2,355 | 24 | QUESTION:
There were both huge physical effects --
ANSWER:
Yes.
|
2,356 | 24 | QUESTION:
-- and mental effects?
ANSWER:
Yes.
|
2,357 | 24 | QUESTION:
You have said that you are somebody who wouldn't
choose to take anti-depressant medication?
ANSWER:
No.
|
2,358 | 24 | QUESTION:
And you had resisted before the first round of
treatment started?
ANSWER:
Yes. I went against advice, but I said no. I ref er to
them as happy tablets. I said: "No, I don't want
them. I don't need them." They told me: "It is no t
you personally. It is the medication that's going to
do this to you." So after six to eight weeks
I eventually had to give in, because it changed my
humour, my outlook. I was more anxious. I was
jittery. I was just in a bad, bad place.
3
|
2,359 | 24 | QUESTION:
How did this affect your relationship with your
family?
ANSWER:
I suppose you look at them and think it is unfair for
them to watch -- number one, the two boys, their da ddy
in this state they wouldn't have seen before.
I suppose my wife then trying to keep a house as
normal as possible. It is a true saying, you take
your worst cases out on the ones closest and deares t
to you. So ...
|
2,360 | 24 | QUESTION:
You have described that you went through a very low
period and thoughts of ending your life --
ANSWER:
Yes.
|
2,361 | 24 | QUESTION:
-- crossed your mind. Your relationship with your
children suffered. You felt you were failing them all
the time:
"I could do nothing with the children during the
treatment, not even kick a ball around or go for
a walk. I felt bad for them, that they were missin g
out."
ANSWER:
Yes.
|
2,362 | 24 | QUESTION:
It was at that point when you started treatment tha t
you told the children for the first time that you h ad
hepatitis?
ANSWER:
Uh-huh.
|
2,363 | 24 | QUESTION:
How did you explain it to them?4
ANSWER:
Well, more so the biggest, or the oldest, sorry, he
was studying for his 'A' levels. He came in one da y
from school covering biology, and he clicked that
there was something wrong. So as children do, they
are very black and white. He said to his mother
first: "What has daddy got. Has he got cancer? Ha s
he got AIDS?" So me and him were supposed to go to
Belfast the following day. So me and him had
a discussion in the car.
|
2,364 | 24 | QUESTION:
During that first tranche of treatment, you were of f
work throughout 12 weeks?
ANSWER:
Yes.
|
2,365 | 24 | QUESTION:
And then returned on light duties?
ANSWER:
Yes.
|
2,366 | 24 | QUESTION:
How was that for you?
ANSWER:
It was hard, because I normally would have worked
a 50, 60, or a 70-hour week, as a sales manager.
Probably trying to excuse yourself from work. Work
was very good. My employer, I didn't hide the fact
from him what was wrong, and he knew it, and he
accommodated me, to be fair, very well. But it was
just people coming in and saying to you, not meanin g
nothing by it, but just saying to you, "God! You g et
it quare and handy. You work a two, two and a half
day week while the wife slogs away. You know, have 5
you any more recipes for that?" It is very hard to
take as a man, as a person who would have worked, y ou
know, from they're 17 up to the present time 60,
70 hours.
|
2,367 | 24 | QUESTION:
In fact, you have not been able to go back since th en
to be full-time?
ANSWER:
No.
|
2,368 | 24 | QUESTION:
What impact has that had on your family life?
ANSWER:
The biggest thing to me is the work ethos. You s ee,
when you have children, you want to install a work
ethos into them, that, you know, you don't get
nothing. You have to work for it. I suppose tryin g
to keep -- that was my reason to try and stay in
employment. The financial end of it, you know, you
just lost so, so much in that aspect of it, you kno w,
regarding providing financially for your family and
the things you want to do. We would have worked --
because it was a sales-oriented thing, we would hav e
worked on a bonus. So if you are only going to be
there two days a week, that disappears very quickly .
|
2,369 | 24 | QUESTION:
Because of that your wife has had to stay at work
full-time and do considerable extra work to try to
keep the family income at a level --
ANSWER:
-- that we were used to and accustomed to, yes. You
can sacrifice for a short period of time but then t he 6
resources you have become drained.
|
2,370 | 24 | QUESTION:
That first course of treatment was not successful?
ANSWER:
No, there was a relapse in it, yes.
|
2,371 | 24 | QUESTION:
You said that you felt the hospital team were as
disappointed as you were?
ANSWER:
They were. I sort of made it -- because it was t he
Haemophilia Centre, and I knew them all my life,
I made a deal with one of the nurses. I said: "Ple ase
don't ring me at home. Ring me on my mobile." She
said: "That's not fair." I said: "It is fair."
I had my own gut feeling in April that I was
becoming symptomatic again. I had said it to my wi fe,
but she was the ever positive one, saying: "No, no, it
was the treatment. You'll be okay, it is fine."
I got the call in June on a Tuesday. I made the
unfortunately mistake of not telling my wife -- it was
a Monday, sorry -- until the Wednesday, which I nea rly
got divorced over, because I thought she was in too
good a humour coming home from work and I thought:
"What's the point in telling her now?" I kept it
until Wednesday lunchtime and I informed her, but s he
called me out and asked me when did I find out enou gh.
I suppose with brain fog and everything else I
happened to say that it was Monday they phoned me. So
...
7
|
2,372 | 24 | QUESTION:
And you got into trouble?
ANSWER:
Yes.
|
2,373 | 24 | QUESTION:
You didn't then start a further course of treatment
until 2013?
ANSWER:
Yes.
|
2,374 | 24 | QUESTION:
How were you physically and mentally during that ti me,
between the first treatment and getting started wit h
the second?
ANSWER:
Physically, it was a game. Just the post side-ef fects
of the treatment. You said to people, yes, all
haemophiliacs have pains in their joints. This was
something completely different. As I say, the
tiredness was just -- just where somebody sucks the
life out of you. I would have went to work on
a Monday, I would have spent Tuesday and Wednesday
near enough sleeping. When the boys were getting
bigger, I used to say to the biggest boy -- I'm not
sure what age he would have been, 10, 11 or 12 year s
-- I used to say to him: "Now daddy is going to fal l
asleep in the living room. I have put one chair
across the hall door, but you have to guard the din ing
room doors, in case the smaller child gets out",
because you were just falling asleep and you couldn 't
control it. Now he thought it was great, because h e
had great access to his PlayStation 1, and, you kno w, 8
he wasn't getting disturbed, so he thought it was
great and he kept the deal.
|
2,375 | 24 | QUESTION:
You then had some fibroscan results in 2013 --
ANSWER:
Yes.
|
2,376 | 24 | QUESTION:
-- that weren't very good --
ANSWER:
No.
|
2,377 | 24 | QUESTION:
-- and you had a long discussion about what to do.
ANSWER:
Because of the effects of the first treatment and
because my LFTs were coming back raised again, it w as
decided then that we would get a fibroscan and
I determined then on the results of the fibroscan i f
I would go ahead for more treatment, the reason bei ng
that we were always told that there was more and mo re
new treatment coming through and more tests coming
through which wouldn't be as severe as the Fibrofer on
and Interferon, but then when the results of the
fibroscan came through, it was decided then it woul d
be better to act than wait.
|
2,378 | 24 | QUESTION:
So you were told you needed to start --
ANSWER:
Yes.
|
2,379 | 24 | QUESTION:
-- a second course --
ANSWER:
Course.
|
2,380 | 24 | QUESTION:
-- of treatment and you had a consultation with
a doctor.
ANSWER:
Yes. 9
|
2,381 | 24 | QUESTION:
Can you tell us about that?
ANSWER:
A very short and brief encounter. My wife and I went
up to meet him. On recollection it was a lady
registrar who met us. She introduced herself and s he
says -- she wasn't even aware. She had said to me at
the start, "You don't want the treatment. You
rejected it", and I says, "No, it wasn't that. We
said we were holding off until the results of the
fibroscan came through", says I, "but now with henc e
the results findings, we want to commence the
treatment". So then she excused herself and she le ft
the room and she came back then with the consultant .
|
2,382 | 24 | QUESTION:
And what did the consultant say to you?
ANSWER:
Well, he came into the room and he addressed me a s
[name redacted]. He says, "I believe now you would
like to commence this treatment". I will probably
have to look at my statement to give you the word f or
word which he had mentioned me.
|
2,383 | 24 | QUESTION:
Would you like me to read it?
ANSWER:
Yes.
|
2,384 | 24 | QUESTION:
"He went on to say that if society in general were
aware of the granting of funding, then, and I quote ,
'people' like you would be banging at the door to
acquire a place of treatment'. I' not sure what
'people like you' meant. I had always looked after0
myself. I had never engaged in anything experiment al
in relation to risky social behaviour, and I felt t hat
this man didn't realise that I'd been given this vi rus
by contaminated blood products. The consultation l eft
me feeling very low and worthless."
ANSWER:
Yes.
|
2,385 | 24 | QUESTION:
Is that your recollection?
ANSWER:
It is.
|
2,386 | 24 | QUESTION:
We have had a response from the doctor, which will be
published alongside your statement.
ANSWER:
That's okay.
|
2,387 | 24 | QUESTION:
He says that what you recall him saying is not
language he would use. He has said this:
"I would simply never countenance the use of the
term 'people like you'. I insist I wouldn't have u sed
such language and such language had no place in
providing care to the population of patients attend ing
the liver service."
He says:
"There's no evidence to substantiate the
allegation and I do not believe the language descri bed
would be that which I would use. Indeed, I find it
abhorrent to be accused of using such language, giv en
the commitment I offer to my patients."
How would you respond to that?
1
ANSWER:
I suppose that is his account of it, but it's not my
recollection of what was said that day. I have my
wife as a witness to what was said, and probably in
hindsight there is a registrar as well, but I provi ded
in my statement what was said and I have no reason to
not tell the truth.
|
2,388 | 24 | QUESTION:
Once you were on that second course of treatment ca n
you describe the side effects that you had?
ANSWER:
Again it was the same of the Fibroferon and Inter feron
and then after I think it was six weeks they
introduced a third drug called Boceprevir. When it
kicked in, it was a different piece of work
altogether. We thought the other two was bad, but it
was very, very bad. The only thing probably that
I found very hard to accommodate was they not
insisted, but they advise you to eat an extra
60 milligrams of fat throughout taking the treatmen t.
So you took it at 8 o'clock in the morning, the
first part of it. You took the next part at 4 o'cl ock
and the next part at midnight. On them intervals y ou
had to eat an extra 20 milligrams of fat to absorb
what they were giving you into your system very
quickly. Now within probably seven, eight weeks --
I am generally of a big build -- I had put on a sto ne
and a half, and I~thought, you know, "You told us t o 2
beware of a fatty liver and now yous are telling us to
eat this and then putting on this amount of weight" .
So in my -- I said no, I didn't want to presume wit h
the eating of the 20 grams of fat three times a day .
They had to check and they came back and said, "Wel l,
if you can accommodate or stick the amount of vomit ing
you're going to have with it, so be it. You can
proceed", and that's what I done. I just went off it.
Now at the same time my good wife would always
have made me croissants in the morning. It was a b ag
of Tayto and a Mars bar at 4 o'clock. At 12 o'cloc k
at night it was trifles from Marks and Spencers.
I have never had a trifle since. It was one of the m
things. The side-effects was very, very similar to
what I experienced on the first treatment, I suppos e,
and one comment, when they introduced a third drug it
completely threw me then. You had the side-effects of
the depression, the anxiety, the neutropenia that
comes with it, the rigors, the shaking, the high
temperature and then you are coming back down again .
It is very hard to explain to anybody unless those who
have been through it knows what it actually feels
like.
You say these things in general, but it doesn't
touch to what you felt when you were doing it. 3
|
2,389 | 24 | QUESTION:
Thankfully, that second course of treatment cleared
the virus?
ANSWER:
It did.
|
2,390 | 24 | QUESTION:
But you have been left with a number of
side-effects --
ANSWER:
Uh-huh.
|
2,391 | 24 | QUESTION:
-- even now. Can you tell us what they are?
ANSWER:
It is mostly the pain issue, the tiredness.
I actually went back, from recollection, to say to
them: "You know, there is something wrong here. I am
too sore. This is not normal". I was dismissed th e
first time, and they said it was part of my underly ing
conditions of arthritic changes with the haemophili a
and the joints bleeds. But I said: "No, it is not
like that, it is completely difficult." In hindsig ht,
they had found and said to me: "Yes, you were
correct". Because you begin to think: "Am I sane? Am
I imagining these things." They eventually came ba ck
and said: "Yes, there is severe side-effects to
people's joints, and everything associated with the
treatment.
|
2,392 | 24 | QUESTION:
You have continued to suffer from chronic fatigue?
ANSWER:
Chronic fatigue, irritable bowel. I am getting t ested
now for fibro. I attend a pain clinic where I come
from. The consultant there is very good and is awa re 4
of all different treatments that you go through. S he
has conducted my pain relief. It consists of
125 milligrams of BuTrans patches, which is fentany l
based, which is replaced every three hours. Then I 'm
on Abstral, which I take at night-time for the pain s,
because I daren't take them during the day when I'm
driving. Co-Codamol, and then Lidocaine patches,
which is like a patch that you put on to your joint s
that then releases a slow anaesthetic to freeze the
joint or freeze wherever the pain is most associate d
with.
|
2,393 | 24 | QUESTION:
You are clear that those joint pains feel different to
your haemophilia joint pain?
ANSWER:
You know the difference. Anybody who has haemoph ilia
knows the difference. Even from a bleed point of
view, it is completely different. It kicks off and
attacks your whole body at once. It doesn't take
a specific area. It is usually your larger joints,
your larger bones. It attacks your arms, your elbo w
to your shoulder, across your back and down through
your larger parts of your legs.
|
2,394 | 24 | QUESTION:
Can you tell us what the impact has been on your
mental health?
ANSWER:
It is the sleep. If the pain does kick in, you d on't
sleep. You walk the floors. You try not to make
5
a noise. I always had a thing about taking tablets
and not taking too many, but at times you just go
looking for them, because you need them. I suppose it
is not fair on the boys, because you can be very
erratic to them, if you are in pain, and they don't
understand. They are getting to the point they do
understand. They do ask me: "Are you sore today,
daddy". They sort of accept it, but it is still no t
nice to bite at them when you are not in a good --
|
2,395 | 24 | QUESTION:
You have described that you still struggle and try to
maintain a positive mental outlook to this day:
"I often think about the time in my life that has
shaped the way I am today, the emotions of anger,
hurt, dishonesty and shame. Yes, shame. I have
always felt dirty, identified as the dirty case, ke pt
to the last on every treatment list possible."
Yet you reflect also trying to balance the fact
that you are alive, and have been blessed with
a fabulous family that love you with all their hear t?
ANSWER:
Yes, because you try to get the good out of it in some
ways, that there has been people who went before us
and died. I so sort of class myself as a lucky one ,
because I did get married. I was blessed with two
children. My wife is still putting up with me, so
yes, I am one of the lucky ones, if you want to put it 6
in context against those who are less fortunate.
|
2,396 | 24 | QUESTION:
You have received payments from the Skipton Fund?
ANSWER:
Uh-huh.
|
2,397 | 24 | QUESTION:
And also personal independence payments?
ANSWER:
Yes.
|
2,398 | 24 | QUESTION:
So welfare payments. What was your experience of t he
Skipton Fund?
ANSWER:
The Skipton Fund, I didn't know much about it. I t was
an appointment in the Haemophilia Centre on a regul ar
review. I was took into the room. This cheque was
produced. I said: "What's that for?
"It is for what you have been through with your
hepatitis C virus."
It was for that sum of £20,000.
I says, the nature of me: "I am very sorry", but
the nature of me, I just told him: "You can put it
where the sun doesn't shine, because I lost that in my
first year's wages. If that's what you think, that
you can buy people off or give people for what you
have given us."
I had to be reinforced because I got very angry.
Then they said I had to sign for it. I said "What
for?" They said: "You have to sign for it. If you
don't sign for it, nobody else gets it."
|
2,399 | 24 | QUESTION:
You also received some payments from the Northern 7
Ireland Infected Blood Payment Scheme?
ANSWER:
Well, that comes, as far as I am aware, from the
Skipton Fund. That's what I am led to believe. Th ere
is a monthly payment, which comes in, which probabl y,
when you equate it up weekly, I think it is £10 a d ay.
|
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