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|---|---|---|
400 | 4 | QUESTION:
-- but you felt you had no choice.
Then you were able to get some temporary work
and then you began to work for another company whic h
had different systems --
ANSWER:
Yes.
|
401 | 4 | QUESTION:
-- that you felt comfortable with that you weren' t
going to, through your hepatitis consequences and
symptoms, make any mistakes?
ANSWER:
Yes.
|
402 | 4 | QUESTION:
But I think you have had to adjust the way in whi ch 9
you work in order to accommodate that. Can you tel l
us a little bit about that?
ANSWER:
Well, I am working for another company now, also
Australian (they tend to pay better than the Britis h
companies) and so I do work for them. I am actuall y
... |
403 | 4 | QUESTION:
So you are essentially working part time doing wh at
you feel physically and mentally able to do?
ANSWER:
Yes.
|
404 | 4 | QUESTION:
You are working purely from home?
ANSWER:
Yes.
|
405 | 4 | QUESTION:
And that has both the benefit that you don't have the
pressure of interaction with others but the
disadvantage for you of isolation?
ANSWER:
Yes, yes, and I've taken steps. I've given mysel f
a kick up the backside and, you know, I've taken st eps
to try and get out a bit more. I've joined a choir0
... |
406 | 4 | QUESTION:
You say in your statement that you have a longer term
worry about the future, that your future is unclear
and you're concerned that there will be a serious
ongoing impact on your ability to obtain or sustain
employment.
ANSWER:
Yes, I think so and that's a bit of a mixture, no t
just of how I feel withi... |
407 | 4 | QUESTION:
I understand again from your statement that there was
an impact upon your education because there was
a particular qualification you were studying for.
ANSWER:
Yes. I was doing a proof-reading qualification
1
because I mean I've worked informally as a medical
proof reader, but I wanted to get a ... |
408 | 4 | QUESTION:
I think a number of years ago before you were inf ected
you spent quite a lot of time travelling?
ANSWER:
Yes.
|
409 | 4 | QUESTION:
Been to a number of different countries?
ANSWER:
Yes.
|
410 | 4 | QUESTION:
You've described the change for you through the
hepatitis C and the consequent depression as a chan ge
from being a highly self-motivated individual who
taught herself languages to having no motivation or2
interest in doing anything at all?
ANSWER:
Yes, I think that's fair to say. I mean, if you are
s... |
411 | 4 | QUESTION:
You've got a close community of friends --
ANSWER:
I've got -- yes, some close friends.
|
412 | 4 | QUESTION:
-- who have been a tremendous support to you? 3
ANSWER:
Yes.
|
413 | 4 | QUESTION:
But you also say in your statement that your infe ction
has had an impact upon that relationship because yo u
have been a worry to them and you haven't been able to
do with them some of the things you would have want ed
to do.
ANSWER:
Yes. Again, I think that's more the outcome with the
link to fat... |
414 | 4 | QUESTION:
You've told us about the financial impacts throug h
your employment and The Skipton Fund which you say
it's helpful, covers your mortgage, but isn't enoug h
to cover bills, food, other outgoings?
ANSWER:
No.
|
415 | 4 | QUESTION:
Can I just ask you about The Skipton Fund applica tion.
ANSWER:
Yes.
|
416 | 4 | QUESTION:
You made an application in about 2012 and you got the
stage 1 payment, which was the lump sum payment.
ANSWER:
Yes.
|
417 | 4 | QUESTION:
Then in due course it was recommended to you by y our
doctors I think that you should apply for a stage 2
payment?
ANSWER:
Yes.
|
418 | 4 | QUESTION:
What happened in relation to the progress of that
stage 2 payment?
ANSWER:
Yes, well, I'd been diagnosed with stage 4 fibros is
and the word cirrhosis was sort of bandied about an d
the consultant said that's definitely enough to
qualify for the second stage payments. So I sent i n
the application for... |
419 | 4 | QUESTION:
Which I think you finally got in February 2017.
ANSWER:
That sounds about right.
|
420 | 4 | QUESTION:
That's the date in your statement.
ANSWER:
Yes. 6
|
421 | 4 | QUESTION:
Although you eventually got that, you spent some time
trying to get it?
ANSWER:
Yes.
|
422 | 4 | QUESTION:
But, in fact, I understand there was quite
a significant period of time, you're not exactly su re
when but between your diagnosis in 1997 and more
recent years in which you simply weren't aware of t he
existence of The Skipton Fund at all and so didn't
make an application.
ANSWER:
No, I wasn't aware o... |
423 | 4 | QUESTION:
The way you put it in your statement is after you did
finally find out about The Skipton Fund, and the
precise dates don't matter, Kate, you didn't apply for
some time because you felt like you didn't deserve it?
ANSWER:
Yes, yes.
|
424 | 4 | QUESTION:
And then when you finally made your application f or
the stage 2 some years later, you had debts and tha t's
the point at which you realised you shouldn't be
ashamed to take this money?
ANSWER:
Yes, yes.
|
425 | 4 | QUESTION:
Is there anything else, Kate, that you would like to
add?
ANSWER:
I don't think so.
|
426 | 5 | QUESTION:
Steve, you were diagnosed with
haemophilia B when you were about one years old.
ANSWER:
That's correct, yes.
|
427 | 5 | QUESTION:
Initially, when you were diagnosed you didn't hav e
many difficulties with it in the very early days.
ANSWER:
No, I think it was a classic diagnosis of a
haemophiliac. Before one, you were bruising a lot
under your arms and the parents became alarmed and you
were going to the GPs and to the hospitals a... |
428 | 5 | QUESTION:
But from about the age of four you had more regul ar
and severe bleeds?
ANSWER:
Yes, I think as a haemophiliac starts growing and
growing fast is when the joints are developing and
that's when the bleeds really come fast and furious ,
yes.
|
429 | 5 | QUESTION:
You were treated with cryoprecipitate until you w ere
about six?
ANSWER:
Yes.
|
430 | 5 | QUESTION:
Then changed over to Factor IX concentrates?
ANSWER:
Yes.
|
431 | 5 | QUESTION:
As far as you're aware were there any discussions with
your parents of any risks involved in that change?
ANSWER:
Absolutely none at all.
|
432 | 5 | QUESTION:
About that time you were also put on to home
treatment?
ANSWER:
I was, yes.
|
433 | 5 | QUESTION:
Now, can you describe for us what the impact of
haemophilia B was having on you by the time you wer e
about age 6 or 7.
ANSWER:
Personally, my memories of pre-five would just be pain
and hospitals, that's all I can remember, and dread of
going to the hospitals, upsetting my parents. At
five, school ... |
434 | 5 | QUESTION:
You mentioned missing a lot of schooling?
ANSWER:
Yes.
|
435 | 5 | QUESTION:
At about six or seven your parents applied for yo u to
go to Treloars School?
ANSWER:
That's right, yes. They'd heard through a person al
friend who was given a teaching placement there of
this school in Orton Hampshire that was recruiting
a lot of haemophiliacs and there they were getting
a really go... |
436 | 5 | QUESTION:
When did you start attending?
ANSWER:
I started attending when I was about eight years old.
|
437 | 5 | QUESTION:
So about September 1976?
ANSWER:
Yes.
|
438 | 5 | QUESTION:
And you still believe that Treloars was the best place
for you to go?
ANSWER:
I do. I understand why the decision was made for my
parents because obviously they wanted to give me
a good education, they wanted me to have the best
medical treatment and at that time you would report to
my local hospita... |
439 | 5 | QUESTION:
In terms of your schooling and being able to atte nd
school?
ANSWER:
Obviously, yeah, and Treloars, yes, it was
educational. I'll tell you a little bit about the
geographics of Treloars. There was three
establishments of Treloars within about three and a
half miles of each other. There was what was k... |
440 | 5 | QUESTION:
When you first went to Treloars you were receivin g
both cryoprecipitate and freeze dried Factor IX?
ANSWER:
I have memories of having cryoprecipitate at Trel oars
but very quickly they pushed for everybody to be
changed on to factor concentrate. It became appare nt
that I was one of the first ones to ... |
441 | 5 | QUESTION:
When you were put permanently across to the facto r
concentrate, again, was there any discussion with
either you or your parents about the risks of that
treatment?
ANSWER:
Definitely not to my parents. To myself and the other
boys it was being sold to assist this is a miracle to
you guys. To have c... |
442 | 5 | QUESTION:
When you were about 11, so about 1978, you went o n to
prophylactic treatment?
ANSWER:
I did.
|
443 | 5 | QUESTION:
Can you describe how that was carried out at Trel oars?
ANSWER:
Prophylactic treatment is basically they would gi ve
you treatment every other day, usually, maybe two t o
three times a week on a routine basis, which would
prevent bleeding virtually because, obviously, your
factor levels were high so you ... |
444 | 5 | QUESTION:
You've described the treatment room at Treloars?
ANSWER:
Yes.
|
445 | 5 | QUESTION:
Could you describe that for us in your own words.
ANSWER:
As I say, go back the very early days, all the
treatment was administered at Treloar Hospital and
that would mean that every morning there will be
transit vans pull upside Treloar School or College,
the 12 haemophiliacs would get in because that... |
446 | 5 | QUESTION:
What was the room like on site?
ANSWER:
The room on site was -- contained, I would say, i t
contained the sink, eight to ten tables, eight to t en
chairs and a doorway which went through to where th e
storage area where the factors were being stored.
|
447 | 5 | QUESTION:
When you went in for treatment what did you find?
ANSWER:
In the early days --
|
448 | 5 | QUESTION:
In the treatment room on site?
ANSWER:
In the treatment room on site, physically what wa s in
there? When I was having treatment you mean?
|
449 | 5 | QUESTION:
You described when you arrived pre-mixed doses wo uld
already be out on the tables.
ANSWER:
Yes, at Treloars there was, in the heyday when I was
there, there was probably up to 50 haemophiliacs in
attendance and you think if they were pushing for
these most people were having three doses a week so
every... |
450 | 5 | QUESTION:
You've described that in the early days if a boy
hadn't turned up for treatment and there wasn't
a syringe ready with your name on it you could simp ly
be given someone else's dose?
ANSWER:
Exactly. If Thursdays they knew it was again
pseudonyms, Smith, Bloggs' and Harry's day, if you
turned up and yo... |
451 | 5 | QUESTION:
You describe that it was very much like a cattle
market for a particular period of about four years.
ANSWER:
It was. It remained that way for around four yea rs,
yes.
|
452 | 5 | QUESTION:
In about 1982 when you were about 15 the push for
prophylactic treatment you say seemed to slow down.
ANSWER:
It did, yes. Obviously, boys being boys there we
wanted to play football, be out riding bikes. The
last thing you want is to keep being called up for
prophylactic treatment all the time and ther... |
453 | 5 | QUESTION:
You also say the way in which treatment was organ ised
from the when you were about 15 changed completely.0
ANSWER:
Absolutely, yes.
|
454 | 5 | QUESTION:
Can you describe what changed?
ANSWER:
There was locks put on doors. You weren't allowe d in
the treatment room on your own. A mixer was instal led
in the treatment room. The bottles were in the
treatment room. The treatment product was mixed in
front of you in the mixing machine. It was pulled up
... |
455 | 5 | QUESTION:
Was the reason for this change ever explained to you?
ANSWER:
No.
|
456 | 5 | QUESTION:
In about 1983 you recall media reports circulatin g
about a link between haemophiliacs and AIDS.
ANSWER:
Yes.
|
457 | 5 | QUESTION:
In your statement, you describe that around this time
some of your friends at the school started showing
symptoms of illness.
ANSWER:
Symptoms of illness, yes.
|
458 | 5 | QUESTION:
Can you describe what was happening?
ANSWER:
There was always -- I mean, this will sound very
flippant to you but there was -- people were ill at
Treloars. We accepted that, that there were ill
people there. There would be cases of hepatitis
there, many, one of the haemophiliacs would go yell ow, 1
h... |
459 | 5 | QUESTION:
I think you said there was a name used to call th em?
ANSWER:
Yeah, he just used to be called banana or somethi ng
like that. A month later he'd be better and it wou ld
be someone else. It was just so normal. It happen ed
on a monthly basis.
|
460 | 5 | QUESTION:
But 1983 you've indicated that it was a little bi t
different?
ANSWER:
With, sorry --
|
461 | 5 | QUESTION:
In 1983 there had been rumours circulating about AIDS
and you said that --
ANSWER:
There was rumours circulating about AIDS , yes, an d the
link was being established between AIDS and
haemophilia.
|
462 | 5 | QUESTION:
You said that:
"Around this time some of my friends at school
started showing symptoms of illness that was nothin g
to do with haemophilia bleeding. It was an incredi bly
scary time for us."
ANSWER:
It was, yes. People were becoming flu-like sympt oms.
People were going home for the half-term break ... |
463 | 5 | QUESTION:
You've described a pact that you and four of your
closest friends made. Do you feel able to tell us
about that pact?
ANSWER:
That was probably a year later. I was either in my
very last year or the first year that I'd left when
the first haemophiliacs were starting to die and
everybody was really scar... |
464 | 5 | QUESTION:
What was the school's response to the rumours and the
increasing illness of the students?
ANSWER:
Okay, in Treloars we've established that the scho ol
and the haemophiliac centre they were on the same
3
site. There was just big double doors between them .
This side was the school, the education; ... |
465 | 5 | QUESTION:
So that was somebody before the AIDS --
ANSWER:
Yes, this was before.
|
466 | 5 | QUESTION:
In terms of how the school responded and talked t o you 4
about what was going on, was there any discussion f rom
the school about what was happening?
ANSWER:
Not when I was there, no, not when I was there.
|
467 | 5 | QUESTION:
Now I want to move on to look at some of your rec ords
and your own infection. You've obtained your recor ds
from Treloars. How did you come to receive them?
ANSWER:
I've received patchy records. They're not comple te by
any means. There are large sections missing. Thre e
to four attempts were app... |
468 | 5 | QUESTION:
Paul, can we have document 1432006, please.
We should be able to highlight, thank you, the
date here is January 1977. You can see that on the 5
left-hand side of the screen and you've been
identified in the bold letters as a hepatitis risk?
ANSWER:
Yes.
|
469 | 5 | QUESTION:
Were you told about this at the time?
ANSWER:
No.
|
470 | 5 | QUESTION:
If we can go to document 1432005, if you look dow n the
middle column you first tested positive for hepatit is
antibodies in January 1979. Were you told about th is
at the time?
ANSWER:
No.
|
471 | 5 | QUESTION:
Were you even aware that you were being tested?
ANSWER:
No.
|
472 | 5 | QUESTION:
Please can we have 1432007. Could we highlight t hat
second paragraph, please. It says your SGOT was
slightly raised and had been since January 1979.
What's your understanding of what that means?
ANSWER:
I have no idea.
|
473 | 5 | QUESTION:
Okay.
ANSWER:
Honestly. I'd imagine it's something to do with the
liver function test, I would assume.
|
474 | 5 | QUESTION:
You said in your statement you understand that ra ised
SGOT is an indication of damage to the liver?
ANSWER:
Yes, liver function test, but I do not know what SGOT
actually stands for.
|
475 | 5 | QUESTION:
That's okay. Were you told about this at the tim e? 6
ANSWER:
No.
|
476 | 5 | QUESTION:
Now, you remember being told to avoid alcohol whi le
you were at Treloars?
ANSWER:
Yes.
|
477 | 5 | QUESTION:
But you say you were certainly never advised that you
had or were at risk of hepatitis.
ANSWER:
No, the first time they ever discussed liver prob lems
with me was when a highly respected haemophilia nur se
and it had been mentioned at this stage to avoid
alcohol because of liver problems and they said... |
478 | 5 | QUESTION:
And you weren't told about your hepatitis infecti on
until 1991 which we will come on to --
ANSWER:
Okay.
|
479 | 5 | QUESTION:
-- in a moment.
Now, you are aware that your blood was being
tested regularly while you were at Treloars?
ANSWER:
Absolutely.
|
480 | 5 | QUESTION:
Why do you think that was?
ANSWER:
It was the norm to have blood taken, I would say, on
a fortnightly basis, if not a weekly basis, sometim es
every other dose you would have it would be, "Oh,
Stephen, we just need some blood from you", and you
7
would literally stick your arm out, they would pull
... |
481 | 5 | QUESTION:
You have said:
"I am convinced that many of the pupils at
Treloars were monitored very carefully and that the y
did all the tests that they could possibly for
commercial interest and/or financial gain."
ANSWER:
I do. I think Treloars had access to virgin
haemophiliacs, so to speak, pups is another wor... |
482 | 5 | QUESTION:
What impact has that had on your willingness to a ttend
medical appointments once you left Treloars?
ANSWER:
I don't have much faith in the medical -- I find trust
very hard because sometimes they're not telling you
exactly as it is. There's an ulterior motive for w hat
they want you to do and that is ... |
483 | 5 | QUESTION:
In those early years after you left Treloars, wha t was
the emotional impact on you of what was happening t o
your friends?
ANSWER:
Oh, it was astounding. The bonds that were built ,
Treloars, as I say, you know, we ate together, we
learnt together, we were treated together, so the
bonds that were bui... |
484 | 5 | QUESTION:
You were first told that you had hepatitis C in a bout
1991.
ANSWER:
Yes.
|
485 | 5 | QUESTION:
How were you told?
ANSWER:
I was told face-to-face by the doctor flippantly,
I would say is a good word. It was in a routine
examination, "Oh, Stephen, by the way, you've teste d
positive for this". I didn't really know what it
meant. I was fully aware of the HIV because that w as
in full flow by th... |
486 | 5 | QUESTION:
You've said that the doctor was extremely guarded and
simply told you to be careful.
ANSWER:
Yes.
|
487 | 5 | QUESTION:
Did he tell you anything about the possible route s of
transmitting the infection?
ANSWER:
No, not then.
|
488 | 5 | QUESTION:
How did you feel when you were given that diagnos is?
ANSWER:
Obviously, you know, the death of haemophiliacs w hen
this was happening was really, really massive scale .
You know, it was one a month and I attended many
funerals and I suppose when you attend so many and you
see 30/40 of your friends die... |
489 | 5 | QUESTION:
One thing you did after you were told about your
1
hepatitis C is you became worried about your own
financial position; so you found a job at the parks
department of the local council?
ANSWER:
Exactly. I mean, again, it was well aware at thi s
stage that haemophiliacs couldn't get life insuranc e
... |
490 | 5 | QUESTION:
So you particularly went for that job because of the
tied accommodation that came with it?
ANSWER:
That's what attracted me to it, yes.
|
491 | 5 | QUESTION:
After about two years in that job you left the ro le.
ANSWER:
Yes.
|
492 | 5 | QUESTION:
Can you tell us what happened.
ANSWER:
Somebody spotted a disabled sticker in my car and
obviously started to dig and first thing I knew is
you've got an appointment with human resources,
I think, and she was called in and there was a lady
sitting there I'd never met before and started aski ng
questions... |
493 | 5 | QUESTION:
So you and your first wife moved into a council f lat?
ANSWER:
Yes.
|
494 | 5 | QUESTION:
You became a service engineer for household goods ?
ANSWER:
I did. When that happened I felt broken again bu t
I was still reasonably well at that time and
I thought, "I can pick these pieces up and start
again", and I did and I thought, "Well, how are you
going to hide it again?" I thought, "You're go... |
495 | 5 | QUESTION:
Before we talk about that, can you just describe for
us a little bit more about the symptoms you were
experiencing towards the end of your time when you
were employed.4
ANSWER:
Fatigue. Fatigue was the main one, tiredness. I t's
hard to explain. It's a brick wall at 2 o'clock in
the afternoon. It's... |
496 | 5 | QUESTION:
So you set up your own business.
ANSWER:
Yes.
|
497 | 5 | QUESTION:
It did very well --
ANSWER:
It did, yes.
|
498 | 5 | QUESTION:
-- to start with.
ANSWER:
Yes.
|
499 | 5 | QUESTION:
How did you manage your symptoms while you were
running your own business?
ANSWER:
Obviously, I was fully aware that my health was
declining and it was declining reasonably fast. So
5
I wanted to be able to cope and manage my day to -- so
at that time I had two young children, a mortgage d eal
a... |
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