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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
still registered with Universal Credit because my
hours are still quite limited and that really is
linked to the depression and the associated
concentration, motivation issues and fatigue and ho w
long I can work each day. So some months I do bett er
than others. The work tends to be pretty much, oth er
than Christmas and so on, always available but I am
limited by how much of it I can take off from them and
that's sort of the current situation.
|
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
again, I used to sing a lot, and that kind of thing to
sort of help that.
|
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 within myself but applying for
a job outside of the home requires references and I 've
not done so well having been fired from a job and s o
on, and last time I did have an outside job where
I was employed as opposed to self-employed there we re
some issues there with the occupational health
discussing the hepatitis C infection and the
depression and so on and they -- I did get the job but
there was quite a lot of kind of queries and questi ons
over it. So I'm not sure how that will play in
either. But, yes, it's mostly how well I think
I could cope with it or whether I could get a job o r
if I got a job whether I could keep it.
|
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 formal
proofreading qualification to allow me just to exte nd
what I could do a bit and also because I was workin g
from home possibly get work outside of -- when I'd
done the proofreading work it was mainly for the
consultants I was working for and I thought if I ha d
a qualification I could offer myself as a proof rea der
to possibly medical journals and the like or in
a non-medical area.
Many years ago I went to theological college as
well and I thought maybe I could offer myself in th at
area which has got some quite specialist language a nd
so on, but I had to give up the course before --
I just couldn't study properly or get to finish tha t
so I had to give that up.
|
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
somebody who knew me even, I don't know, 10/15 year s
ago they would probably describe me very differentl y.
I was well respected at work. I was very busy. I did
a lot of singing as a soloist and in groups, in ope ra
and other areas. I taught, I got together groups t o
learn to sing as a choir of singers. I taught
singing. I taught needlework and so on when we had
our shop and before that. I was involved -- you kn ow,
I went overseas doing relief and development work.
I was quite involved in the church I belonged to wi th
caring for homeless people and I was a lay preacher
and all these sorts of things and liked being able to
participate and be of -- you know, give back to the
community, as it were.
Yeah, I've reached the point where I really
don't do anything and sort of try not to hide from the
world. I've been trying to not to, especially for the
last few months, but making positive steps there bu t,
yes, it's been a real turnaround from the kind of l ife
and the sort of person I was, I suppose, yes.
|
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 fatigue and depression. At one point a few
years ago my very best friend, and she said it kind ly,
said, "You know, sometimes when you're in the room,
it's just like having a dark cloud in the room", an d
that was really painful and I've learnt ways over t he
years. I now call myself a cheerful depressive
because quite a lot of people wouldn't know how
I sometimes felt inside and, actually, sometimes
I think, well, it's a choice how we, you know -- or
a good friend of mine says you fake it to make it a nd,
you know, there's some truth in that if I choose to be
cheerful, you know, it feels better and that's
obviously better for my friends.
So you're right, it was very painful to see the
effect I was having on people that really cared a l ot
about me and, you know, as I said, that was one of the
things that really made me think about suicide beca use
I didn't want to do that to them. I think since th en 4
I've found ways of actually being better when I'm w ith
people so that that hasn't got such a big impact on
them.
|
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 form and, you know, the doctors fil led
that in and that was refused and when I tried to fi nd
5
out why, it appears that in the NHS they use in
pathology they use the Ishak Staging System to
classify levels of fibrosis of the liver and,
apparently, at that stage, it was borderline
cirrhosis. It turned out that the Skipton Fund peo ple
used a different staging system which was also
borderline but whereas in the NHS system I was over
the border, with the Skipton system I'm not sure wh at
they called it, the classification system, I was
slightly under and my consultant wrote back to them
saying, you know, to all intents and purposes, Kate
has this degree of liver damage which is, you know,
and she is eligible for this, but they refused it
again.
I just left things at that point and it was
I think, I'm not quite sure of the timing, maybe it
was a couple of years after that that I had
a fibroscan which showed that the damage had increa sed
quite a bit and so it was suggested that I reapply and
at that stage The Skipton Fund granted me the secon d
stage payment.
|
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 of it and I was just rereading my
notes earlier and last night, and there is a note
somewhere -- I did write it down if it is important in
a letter, 1416011, which is 2012, where the doctor
there is actually confirming the diagnosis and he s ays
he encouraged me to apply for the Skipton funding.
Even once I knew about it, actually, the initial
payment I decided not to apply for it because at th e
time I didn't realise what the implications would b e
financially. I didn't -- I wasn't in financial
trouble at that time and I'm a bit -- I don't like the
idea of applying for compensation for the sake of i t,
sort of thing. I wasn't quite sure if it was
compensation anyway but, you know, I'd raged on abo ut
UK is going to become like America. We're going to
demand money for, you know, falling over a pin or 7
whatever.
So it was, I think, a couple of years later when
I really realised that I was struggling financially
and that it was reasonable that I receive the money
and fair and I applied for it then. That was the
initial one, the initial stage payment.
|
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 and, aga in,
there's the classic parents coming under the radar of
is this child abuse, is this baby battering, before
the diagnosis because obviously it's very unusual f or
a child to be bleeding and have things. But about one
years' old is when the formal diagnosis of haemophi lia
came through, yes.
|
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 age, trying to attend the mainstream
school, being sent to a mainstream school, missing
more than what I was able to attend because I was
bleeding. Pain, yeah, pain and constant bleeding
really constant bleeding.
|
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 good education and it was geared up and th e
medical treatment was freely available on site.
|
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 hospital which in that case I was living i n
Portsmouth, which was St Mary's and you were litera lly
fighting for treatment because the treatment wasn't
readily available, you wouldn't see the same doctor
more than once. It would usually be a houseman.
The general consensus was go home, bring him
back in the morning to see if it's any better.
Obviously, you quickly learn it will never get bett er
so the bleeds got worse because the treatment just
wasn't as freely available, but at Treloars it was
made clear that if you had a bleed you would be
treated within hours.
|
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 known as
Lord Mayor Treloar College, which was a very grand
old-style school, which was purely boys from the ag e
of around 11 upwards; there was Florence Treloars
School which was just down the road, which was
predominantly girls, and haemophiliacs, boys and ot her
boys under ten were put in that unit for the first two
years until they were able to move up; and there wa s
Treloar Hospital which again was about a mile down the
road where first -- where all the treatment was
administered in the early years.
|
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 be put permanen tly
across, yes.
|
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 cryoprecipitate would mean you
would be lucky to get out the treatment that day. It
would take two or three hours to administer. You'd be
under a drip with your arm out, two to three hours,
and then they invite you to rest for two hours befo re
you went back to normal life. Sometimes it was lon g,
depending on the size of the dose. This was coming in
a 60 ml syringe which could be administered within
quarter of an hour/20 minutes and you could get up and
walk away. And, of course, this was in little bott les
which you could take home with you, administer
yourself at home. So cryoprecipitate couldn't be
administered at home. You had to report to hospita l.
|
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 didn't bleed. There
was a really, really big push in those years to get as
many haemophiliacs as they could onto prophylactic
treatment.
Again, there was no risk assessment done to me.
They didn't say this stuff contains a risk. Obviou sly
the more you have, the greater the risk. That wasn 't
explained at all. It was just sold to you purely,
"This will give you a more normal life. You'll hav e
more free time. You'll be fitter, so take it".
|
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's ho w
many they seated, and they would be ferried to the
hospital where the treatment was administered.
In those days, it was mainly cryoprecipitate.
You would be down there three hours and then they
would ferry you back to the school and these vans w ere
running three or four times a day. After I had bee n
there about two years, the actual haemophilia centr e
moved to the school; so it was administered actuall y
on site.
|
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 morning there would be 20/25 haemophiliacs
queuing up for their treatment.
The treatment room itself contained eight
tables, when you went in there it was very regiment ed
at Treloars, you were known by your surname , you we re
given a number, a laundry number and your surname
there was no Christian names. Again, these were al l
pseudonym names, like Big Ears, Joe Smith and Blogg s
written on a white Luxon sheet on the table with
pre-mixed doses. So there would be syringes with j ust
a clear substance in it, some may have peoples' nam e
on, around the room. So you'd report there, look f or
your name. If your name wasn't in there, you may w ait
until your name was called.
|
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 your name wasn't in there and they sa id,
"Where's Harry today?"
"Didn't you know he's got an exam?" They'd say,
"Well, you may as well have it", because he was com ing
back later, so there was absolutely no way you knew
what was in that particular syringe, what product w as
in that syringe. All you know is it had been
pre-mixed and it had your name on it.
|
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 there was - -
yes, we didn't like it but if you could stand it th ey
would push for it.
But as the boys got older obviously refusals
started to happen, "I'm not doing that, I'm not doi ng
that". But it wasn't because of the risk of infect ion
because it wasn't known then. It was just purely
because your veins, your physical body couldn't tak e
it.
|
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
in front of you. Records were kept. It was clear
that every batch number was being taken off the
product and you noticed a change there, yes.
|
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
he would get no special treatment at all, he would
attend school as normal, he would play football as
normal. In fact, he would be teased about being
yellow. That's just the way it was.
|
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 and
they wouldn't be returning. Yes, there was a lot o f 2
people, glandular fever, throat infections becoming
a lot more prominent. Everybody was worried becaus e
the link, it was the press story was just breaking
that there was a link between haemophilia and HIV,
yes.
|
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 scared and, yeah, four or five of
us in the room and we realised that this is serious
and this is killing us or killing haemophiliacs and we
said, "This is going to happen to us, we can see it ",
and we said, "Right, we've stuck together right
through our childhood. If it happens and it kicks off
we're going to rely on the person still alive to
pursue it and find out why and what went wrong", an d
I'm the only one left. That's tough. I think abou t
that every day and ... it's tough.
|
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; that side was
the haemophilia centre.
They didn't hide it but the way it broke at
Treloars was the newspapers. No-one had mentioned the
word AIDS or anything. It was just all over the
newspapers. Obviously the haemophiliacs wanted
answers and started to ask questions.
I think, first of all, I think they said, you
know, "Don't worry, don't worry, just carry on as
normal just carry on", and we sort of accepted that .
So Treloars was -- we were exposed to mortality at
a very young age at Treloars. Obviously, there was
some very sick people there and through the -- I wa s
then for six/seven years so I saw a handful of peop le
die. I will give you one example where we were
playing football and one of the lads just dropped d ead
on the floor. Obviously, we're 13/14-year old lads ,
so one of us jumped on the bike, quickly rode round to
the haemophilia centre where the doctor was on call ,
he came running down with a bag, got there too late .
He'd gone.
|
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 applied for because Treloars is
no longer. It's now all moved to Basingstoke.
Initially on request they said, "No, They've all go ne.
We haven't got them anymore". Kept trying, receive d
dribs and drabs through and then one day I went to
Treloars -- over to Basingstoke to the thing, they
said, "Oh, Stephen, you were after records". There 's
a new haemophilia doctor had arrived. He said, "We 've
just unearthed boxes of records in a cupboard of th e
Treloars days. Would you like them?"
Of course I said, "Very much I would, yes."
They weren't complete but there was three or four g uys
who got a reasonable set of notes there, found in t he
cupboard, yes.
|
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, "Y our
liver's under enough strain as it is coping with th e
amount of factor you're having; so don't give it an y
extra pressure by drinking alcohol".
|
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
60mls back in a syringe, start squirting it into
bottles, connect your factor up and you'd have your
factor and you'd go. You didn't question it. It w as
normal to every -- not just me. As I say, I'm
speaking for the whole of the Treloars boys. It wa s
normal for people to be giving blood on a weekly to
fortnightly basis, large quantities, not test tubes ,
tens of test tubes.
|
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 word.
They had boys there from 8 years old who had obviou sly
never been exposed to any drugs, sex, alcohol, any
other of the ways any of these infections could be
contracted and they were monitoring us. They were
taking blood and looking how things were developing ,
how fast is this progressing, who is getting what,
what is happening here. We didn't even know anythi ng
was happening. It was just the norm for blood to b e
taken in large quantities to all the boys there.8
|
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 the beauty of the
internet now. You can research things and the good
thing about Treloars was, as I say, 89 boys went th ere
and I'm one of the 16 still left. But we still tal k.
We can confer with each other, even at the other en d
of the country, "What is happening to you, what is
happening". He's been told something totally
different to me and you can question it.
So I'm very fortunate to have those companions,
those people who are going through exactly the same
thing as you to confer with, so we're a tough bunch to
be because we can talk to each other.
|
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 built become like brothers. They
weren't just like school mates, you know. Close 9
friendships, close bonds were built there and to se e
your friends dying one by one and it's always in th e
back of your mind there but for the grace of God go I,
I could be next.
That was -- obviously we were feeling it but
people handle it in different ways. My way was I j ust
blotted it out, just focussed forward and told no-o ne
and that nobody included -- obviously, my parents k new
I was a haemophiliac but they didn't know the probl ems
that was going on with it. I sheltered them from
that.
|
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 this time. I thought, "What are yo u
saying?" He said, "You know, not too much to worry
about but life expectancy could be affected here bu t
my advice to you is just carry on as normal, carry on
as normal", and that's what I did.0
|
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, it's always in the b ack
of the mind there but for the grace of God go I, bu t
you do become slightly hardened to it, you do, and
I thought there is could be it, this one. And, yea h,
I was shattered. I really -- it took a while to si nk
in and for me to decide how I'm going to cope with
this and what am I going to do, and so I decided to
just crack on with what was left, don't look back.
I became very anti-Treloars for a while because
I thought it's not worth going back there. There's
none of us left, but I pulled myself together and
thought just live for the day, just keep going, jus t
keep going and that's what I did.
|
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
and, therefore, couldn't get a mortgage. I thought ,
"Well, how am I going to get around this?" and I
think, logically, let's pursue going for jobs with
accommodation and that's what I did. Again, I didn 't
declare it. At that time, I was a reasonably well
man. I was -- I told nobody and got a job.
|
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, and I was totally flabbergasted by the
questions she was asking. But somehow she got the
information. She knew I was a haemophiliac. She 2
didn't ask me directly but I could see exactly wher e
she was coming from. Obviously, I couldn't deny it .
So I listened to what she had to say and they
were -- made it very clear they were uncomfortable me
being there. They wanted to know what I wanted to do.
They made me feel very uncomfortable. They wanted me
to resign or -- which I wouldn't and it was sort of
left for about a day and I thought where's this goi ng
to go? Then I was called back and, you know, "Have
you had any thoughts about the thing", and they sai d,
"We'd like you to leave and leave quietly", and
I said, "Well, but my accommodation's tied what am I
going to do?" They said, "Well, short-term we'd ju st
like you to go sick for up to a year. There will b e
no questions asked and during that year we'll find you
a council house".
|
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 going to
have to do it". So we had plans, we wanted a famil y, 3
we wanted a normal life and I thought, "Well, I'm
going to have to go and get another good job here", so
I thought, "I'm going to have to reinvent, basicall y",
which is what I did. I went for another job, didn' t
tell them, got a good job.
We wanted to buy a house. I knew you couldn't
get a mortgage, a haemophiliacs got no chance but, you
know, I admit it, I applied for a mortgage and
I didn't tell them. I lied. I got a mortgage and
life went on for ten years, I suppose, ticking alon g
quite nicely. I was earning well, we had a family.
Then my health started to suffer. I was getting
tired a lot and I was struggling to do the job and I'd
gone up and I was training the engineers at the tim e.
I sort of worked the day around it and thought you' re
not going to be able to do this for much longer and
I wasn't ready to throw the towel in. So I thought ,
"Well, what can you do?" So I thought, "You're goi ng
to have to reinvent again". I thought I'll even se t
up my own company doing exactly the same thing wher e
I'm in control.
|
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 not tiredness. Your body is j ust
telling you you've got to sleep, not you need rest.
You've got to sleep. You've got to. I was driving
around and I knew I had to pull over and I had to
sleep and then try and get through the day.
That's what it -- it creeps up fairly gradually
and probably had been creeping up for many years
before that but that's the time I realised it's
getting dangerous now because you're working with
electricity, you're working in people's houses, thi s
isn't fair. The risk is getting too much and you
can't carry on like this safely and that's why I ch ose
to leave that employment, yes.
|
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
and I knew it had to succeed. So I used to get up at
8 o'clock and I may work until 11 o'clock and I wou ld
work hard flat out.
The business I had was a service engineer.
I used to go round peoples houses fixing cookers an d
washing machines, et cetera. I'd cram four in an
hour, get them as close to each other, bang, bang,
bang, and then by 12 o'clock I'd just come home and go
to bed because I was exhausted. I may get up at
7 o'clock for something to eat and go back to bed
again and then do the same the next day and that we nt
on for years.
|
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