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2,000 | 20 | QUESTION:
Were you ever offered any emotional or psychologi cal
support?
ANSWER:
No.
|
2,001 | 20 | QUESTION:
But you have accessed some private therapy.
ANSWER:
That's correct.
|
2,002 | 20 | QUESTION:
Can you tell us about that.
ANSWER:
Yes. So I have been fortunate enough to use some of
the money that Macfarlane Trust provided for me to put
towards my own therapy because for me it was about I
needed to get comfortable with my emotional world a nd
my understanding of the complexity of the trauma th at
had actually happened and, you know, I banged my he ad
against a wall with the local community mental heal th
service for a few years and their solution was to p ut
me on medication and, you know, that's a bandaid to
a wound that needs deep cleaning and stitching and
stuff like that and pills don't provide that, you
know.
Given the opportunity to talk about how I felt
when I was 13 and, you know, that kind of stuff wor ks
for me and I've engaged in -- in the last 15 years
I've had 12 years of therapy funded primarily by
myself.
I've had two grants, one from the
Macfarlane Trust which was for £1,200, and I had on e 9
recently from the English Infected Blood Support
Scheme for £900, and I've got to say I find it rath er
insulting that they believe that that is enough mon ey
to deal with the amount of emotional trauma that ha s
been caused by this.
|
2,003 | 20 | QUESTION:
In fact, the therapist kindly reduced their fee
considerably to try and maximise the amount of ther apy
you could have for that money?
ANSWER:
Yes, that's correct. Her normal fee is £200 an h our
and she reduced it to 100 for me and, since then, I 've
said to her that I might have to stop because of my
financial situation, and she has agreed to (if I wa nt
to, which is very hard for me because I'm quite
a prideful man) to see me for free for a little whi le
because she believes I deserve the opportunity to g et
through this and it not be the bag that I carry aro und
with me for the rest of my life.
|
2,004 | 20 | QUESTION:
Because those mental health difficulties have
continued, and do continue, today?
ANSWER:
Yes, and they get progressively worse.
|
2,005 | 20 | QUESTION:
Can you face telling us a little bit of how you a re
now?
ANSWER:
Do you know what, I started seeing this new thera pist
at the end of last year and she's unlocked somethin g
in me and she's given me the opportunity to get 0
comfortable with my emotional world, and I've reali sed
that actually the shame that I carried is not mine, it
belongs to society, and the stigma that I carried a s
well that, belongs to society. They're not mine. And
the process I'm in at the moment is trying to give
some of that back to society, you know, because it
doesn't belong to me.
|
2,006 | 20 | QUESTION:
You continue to suffer from depression?
ANSWER:
Yes.
|
2,007 | 20 | QUESTION:
Anxiety?
ANSWER:
Yes.
|
2,008 | 20 | QUESTION:
And OCD?
ANSWER:
Yes, my OCD, funny enough, in the lead-up to this , has
gone off the chart. You know, I'm doing new things
that I've never done before and I'd got it to a poi nt
where it was manageable and it's become very, very
unmanageable in the last ... last six months,
actually. Actually, maybe before that. My fear ki nd
of started again when the NHS Business Services
Authority and the EIBSS took over. I was extremely
uncomfortable with that arrangement.
|
2,009 | 20 | QUESTION:
What were your particular concerns?
ANSWER:
The Trust were not a perfect solution to the prob lem,
yeah, but I felt like an individual and I think whe n
you're amalgamated into one of the biggest employer s
1
in the UK you become a number and I don't want to b e
a number. I deserve to be a human being and a pers on
and, yeah, my dealings with them have not been good .
|
2,010 | 20 | QUESTION:
We'll come to the detail of that a little bit lat er,
but that was what was causing you considerable fear
and anxiety when the transition happened?
ANSWER:
Yes, and the changes in the benefit system as wel l,
yeah.
|
2,011 | 20 | QUESTION:
You've also struggled throughout in relation to y our
personal relationships and in sexual relationships?
ANSWER:
Yes.
|
2,012 | 20 | QUESTION:
You've described them as becoming highly
anxiety-inducing.
ANSWER:
Yes. I was scared of women for a long time and I --
you know, I grew up in a household full of women.
I love women. You know, they're fantastic. But,
yeah, it was -- being 13 and thinking that if you
touched them, kissed them that you're going to kill
them is very difficult and that was the knowledge t hat
I had at the time.
You know, subsequently, when I did get into
relationships a little bit later on in my mid-teens ,
you know, I became -- I became someone I wasn't in my
mid-teens, let's put it that way, and that attracte d
certain kinds of women, you know. 2
But sexual relations was, and still are
actually, highly anxiety-inducing. I believed at t he
time that my bodily fluids would kill you; so havin g
sex was just ... it's meant to be a pleasurable
experience and what it turned into was a highly
traumatising, highly anxiety-inducing, fear-based
experience, and for a long time I never had -- I ne ver
had sex without a substance in my body for that
particular reason.
|
2,013 | 20 | QUESTION:
Initially you didn't tell anyone particularly abo ut
your infections but then at one point particularly you
did tell one of your girlfriends --
ANSWER:
That's correct.
|
2,014 | 20 | QUESTION:
-- about your infections.
ANSWER:
Yeah.
|
2,015 | 20 | QUESTION:
What happened?
ANSWER:
I -- you mean, how I told her and what I told her ?
|
2,016 | 20 | QUESTION:
You've described that "there was a girl who said she
loved me dearly" but when you told her about your
infected status, she said she couldn't carry on wit h
your relationship.
ANSWER:
So that was a girl that I met in treatment. I we nt
into treatment for drug treatment and I met her in
treatment and we formed quite a close bond in
treatment, which people do -- also a bit like the 3
Big Brother house, you're attracted to people you'd
never be attracted to. But she -- you know, she wa s
my cup of tea, that's the simplest way I can put it ,
and we formed a really close relationship.
I left treatment, she left treatment, we went
our separate ways and she called me about a year la ter
and said, "Look, I fell in love with you. Can we m eet
up?" I went and met her and we were talking and th at
and she knew my story because I'd been honest about it
in treatment. It was the very first time I'd ever
been able to be honest about that, you know, that " my
name's Steven and I'm HIV positive".
Yeah, and we were talking and we went on a few
dates and she kind of said to me -- she said, "Look ",
she said, "I really love you but I can't get past
this, I can't". You know, she grew up in an era wh ere
the stigma and the fear was rife and, yeah, it neve r
happened between us, yeah.
|
2,017 | 20 | QUESTION:
You've said your infections were kept as a secret ?
ANSWER:
Yes, they were my family secret.
|
2,018 | 20 | QUESTION:
Why was that? What was the sort of particular wo rry?
ANSWER:
Well, I think if you think about the era that it was
and, you know, the red top newspapers were not
particularly complimentary about people that had th at
illness at the time and society at large really 4
wasn't. You know, my main concern was is that it
started inward and spread outwards. My parents did n't
have the emotional intelligence to be able to talk
about that stuff. That's no reflection on who they
are as people. They just didn't have the informati on
available to them at the time that they would have
needed to to have had a reasonable conversation abo ut
that.
My bodily fluids in the house became a major
issue, actually, around that time because the fear was
that I would infect my sisters and then that spread
outwards, you know. If the people in the community
found out, there was -- you know, there was people
that had their houses spray-painted, you know, and
I think I've got pretty broad shoulders and I don't
mind taking that stuff on my shoulders, but I would n't
want to inflict that on my sisters.
|
2,019 | 20 | QUESTION:
You've talked about that fear in your home of you r
bodily fluids infecting others.
ANSWER:
Yes.
|
2,020 | 20 | QUESTION:
You said in your statement that your parents beca me
controlling and worried about them?
ANSWER:
Yes.
|
2,021 | 20 | QUESTION:
You suffered from a lot of mouth bleeds. Being
a child, you'd just wipe the blood on the tableclot h
5
or your clothes?
ANSWER:
Yes.
|
2,022 | 20 | QUESTION:
And when that happened there was a real commotion ?
ANSWER:
Yes, there's several incidences like that that I can
remember growing up and this is before I knew. So
I didn't quite understand why there was such a prob lem
going on. You know, my sisters would do it and the re
wouldn't be any of those issues: I would do it and
there would be -- you know, it would be like
a contamination zone.
|
2,023 | 20 | QUESTION:
For a long time you blamed yourself for the break -down
of your parents' marriage as well?
ANSWER:
Yes, that's correct. I think the stress of -- I think
the stress of that period of their relationship, an d
there was some other stuff going on that I've since
become aware of, but at that time I was unaware of
that. I think I walked away with that believing th at
... do you know what, I thought so little of myself ,
actually, that I thought that all the problems in o ur
household were my fault.
|
2,024 | 20 | QUESTION:
You never spoke about your infection with your Mu m
after that first conversation?
ANSWER:
We very rarely spoke about it. I remember having
maybe -- excuse me -- maybe two or three more
conversations with in her before she passed away. My 6
Dad is not emotionally equipped to talk about this
stuff.
|
2,025 | 20 | QUESTION:
He doesn't like to speak about it at all.
ANSWER:
No, he gets -- he is where I was 20 years ago. H e is
extremely angry. Yeah, he's extremely angry. In
fact, this would be a great therapeutic process for
him. Trying to get him to engage in that might be
quite difficult but I think it would do him the wor ld
of good.
|
2,026 | 20 | QUESTION:
Your siblings weren't told directly about your
infections.
ANSWER:
No.
|
2,027 | 20 | QUESTION:
But they sort of picked it up.
ANSWER:
Yes. When I had the cardiac event in my parents'
house, my sister, my middle sister, and her boyfrie nd
were present and obviously the ambulance men had co me
in and very quickly my sister moved her boyfriend o ut
of the room -- very quickly -- because she knew tha t
they were going to ask certain questions that she
didn't particularly want him to hear in that way.
My older sister, her boyfriend still doesn't
know. They've been together 26 years. Yeah.
My baby sister is the most open to being able to
discuss that and she, you know -- she is ... yeah,
she's been a real source of support to me over the 7
years, as has my middle sister. But it's not
something we talk about as a family, no. That's wh y
I think it's been important for me to seek the sour ces
of support somewhere else.
|
2,028 | 20 | QUESTION:
You've talked about having left school at 13 --
ANSWER:
Yes.
|
2,029 | 20 | QUESTION:
-- and all the challenges you faced through until you
realised you needed to sort your life out, but the
lack of education has held you back considerably.
ANSWER:
Yes.
|
2,030 | 20 | QUESTION:
As well as your ill health, you've never been abl e to
work?
ANSWER:
No, no. And now I feel hugely ashamed actually s aying
that in front of all these people.
Well, that's something to discuss in this week's
therapy.
|
2,031 | 20 | QUESTION:
Let's move on to --
ANSWER:
Yeah, okay. No, I'm quite happy to discuss it. It's
just interesting how the process works in my mind.
Excuse me.
|
2,032 | 20 | QUESTION:
In about 1991/1992 when you were about 13 your pa rents
received an ex gratia payment on your behalf.
ANSWER:
That's correct.
|
2,033 | 20 | QUESTION:
It was held for you until you were of age.
ANSWER:
Yes.8
|
2,034 | 20 | QUESTION:
You recall your parents had to sign a waiver.
ANSWER:
Yes.
|
2,035 | 20 | QUESTION:
What did your parents tell you about that waiver?
ANSWER:
Not too much. I just know that they were told if they
hadn't have signed the paper that no-one would have
got any of the payments that were being offered at the
time. So the conversations that my Mum and I had h ad
about it since were the reason that they signed the
paper is because they didn't want to be responsible
for other people, who were in worse position than
I was, not to receive the money that they needed to
receive because there were people -- you know, ther e
was lots of people dying at that time, yeah.
|
2,036 | 20 | QUESTION:
I think you've said that they felt under quite a bit
of pressure to sign that waiver.
ANSWER:
Yes, I think some of it was pressure from the
governmental department that they were dealing with at
the time but I think some of it was their own inter nal
moral code that they had around it as well, that
actually if they didn't sign it and other people
didn't get their money that they wouldn't have been
able to have done that. But it was definitely -- t hey
were definitely put under pressure from the Governm ent
department.
|
2,037 | 20 | QUESTION:
Your father didn't want the money, did he?
9
ANSWER:
No. He called it blood money, yes. He said, "My
son's life hasn't got a price."
|
2,038 | 20 | QUESTION:
But your Mum wanted to use it to spoil you and th e
family?
ANSWER:
Yes, and she did a good job.
|
2,039 | 20 | QUESTION:
You also have received payments, as you've said, from
the Macfarlane Trust, the EIBSS and the Skipton Fun d?
ANSWER:
Yes.
|
2,040 | 20 | QUESTION:
Do you have any observations about the process
involved in applying to the Macfarlane Trust, to st art
with?
ANSWER:
So when I first became aware of the Macfarlane Tr ust
and first applied for some money with them, the
process was, in my opinion, quite straightforward,
quite simple. I believe they did the best with wha t
they were given from Central Government, and there was
a time when they had slightly more sway than they d id
later on in their existence.
The bottom line is the amount of money they were
handing out was insignificant, really, you know, an d
to go through all the hoops that you needed to jump
through in order to get as little money as they wer e
offering just -- for me, I hardly claimed any of th e
money I was entitled to because I just didn't have the
drive or the determination or the mental space to b e 0
able to jump through those hoops.
|
2,041 | 20 | QUESTION:
You described in your statement that initially th e
process of applying for financial assistance was
initially very simple but then there was a cut in
funding, as you understood it, that caused
complications and at that point there was a real
change in atmosphere and they went from being
a supportive entity to not being that way at all, a nd
at that point you disengaged?
ANSWER:
That's correct.
|
2,042 | 20 | QUESTION:
You have spoken a little bit about the change ove r to
the EIBSS.
ANSWER:
Yes.
|
2,043 | 20 | QUESTION:
Do you have any other observations that you want to
make about them?
ANSWER:
They're run like a Government department, basical ly.
The information they provide, the forms you have to
fill in, exactly the same as every other Government
department that you have to complete paperwork for.
And they just don't have the empathic
understanding of what it is that we've suffered wit h
as a community and I think it is -- you know, I've got
an email chain that -- you know, we're talking abou t
a very insignificant amount of money. Basically,
I live with my father and they took his ESA and his 1
council tax benefit into consideration when allocat ing
funds to me, and I felt that that was -- I felt tha t
was unjust, actually, and I told them so. I have b een
waiting for an email from two individuals who are
quite high up in the NHS Business Service Authority
since January to explain it and I have had nothing
from them.
|
2,044 | 20 | QUESTION:
You've said you will provide those emails to the
Inquiry after today.
ANSWER:
Yes.
|
2,045 | 20 | QUESTION:
Those are the questions I have for you. Is there
anything else you'd like to say?
ANSWER:
Firstly, I'm really grateful that we've had an
opportunity to finally say what it is that people n eed
to say. I had my own feelings around my infections
all tied away in a nice little box, I'd done enough
work around it, and I knew that we were going to ge t
nothing and I'd come to terms with that.
When the Prime Minister at the time stood up in
Parliament and said that they were going to re-look at
this issue, it reignited hope in me that eventually we
were going to get the right thing done.
And I am so disappointed.
It's set me back so far in my personal journey
to have that hope flashed in front of me again and 2
then to have it removed and not fulfilled. It has
been really difficult, and I think that's the -- fo r
me, that's the most difficult thing in this whole
process. I'm quite a straightforward,
straight-talking kind of guy and I would just prefe r
for people just to talk straight and not talking
gobbledegook, political speak, all that stuff, you
know. Don't say one thing and do something else.
You've got no integrity when you do that, and I jus t
lose faith in people once their integrity has gone.
You know, I try and live my life that way today,
that I have a bit of integrity, and I just wish tha t
the people that are supposed to serve us (because
that's what they are supposed to do, is serve us) d id
that because it would just make the process so much
easier. If you just come out and say, "No, you're not
getting nothing and that's the end of it", cool.
I can go away and work on that and come to terms wi th
it.
But don't keep drip-feeding me hope and, you
know, something that you're not going to follow
through on, you know. Accountability and
responsibility is really important. You know, if I do
something wrong, I'm held accountable for it and
I take responsibility for it. There's been a compl ete
3
lack of that.
But, yeah, I just would like to thank everyone
really for giving us the opportunity to speak today .
|
2,046 | 20 | QUESTION:
I am just going to ask -- sorry, go on.
ANSWER:
Go on, no.
|
2,047 | 20 | QUESTION:
I'm just going to ask Mr Snowden, who represents you,
whether say there's anything he wants to put to you .
ANSWER:
Yeah, cool.
(Pause)
|
2,048 | 21 | QUESTION:
Colette you're a symptomatic carrier of haemophil ia ANSWER:
Can you tell us what that means.
|
2,049 | 21 | QUESTION:
The Factor XI deficiency was diagnosed in the mid -90s?
ANSWER:
Yes.
|
2,050 | 21 | QUESTION:
In terms of being a symptomatic carrier of haemop hilia
A, can you tell us how that was diagnosed and how t he
symptoms, whether of that or that combined with the
Factor XI bleeding disorder, have manifested
themselves over the years.
ANSWER:
I was diagnosed at the age of three. My mother w as
known to the professor of haematology who establish ed
the haemophilia centre in the Glasgow Royal , and wh en
my mother started a family he asked that, you know,
her children be brought in so that he could test.
I am one of twins. I have a brother and an older
sister.
So in 1962, Professor Douglas as he was known
tested both my sister and myself, didn't expect to
find it in my brother and, of course, did not but w e
were found to be carrying haemophilia |
2,051 | 21 | QUESTION:
In your teens, by the time you got to the age of 16
you were severely anaemic. That affecting your
schooling.
ANSWER:
Yes.
|
2,052 | 21 | QUESTION:
And you continued to experience bleeds over the y ears?
ANSWER:
Yes, that's right.
|
2,053 | 21 | QUESTION:
You were first given factor products, Factor VIII
products, in 1976 when you were 17 years old?
ANSWER:
Mm-hm.
|
2,054 | 21 | QUESTION:
Can you tell us about the circumstances in which you
were given those products.
ANSWER:
Yes. From a very young age, I think the age of t hree,
I suffered from chronic throat infections and my
mother's doctor in the early days did not want --
I should have had my tonsils out when I was small, and
because there was not -- you know, there was a risk .
He knew that there was a risk because my mother had ,
you know, was a problem herself with the bleeding , and
they were terrified that I would have an issue, so it
was put off and put off and, eventually, I lost a l ot
of schooling because I was constantly off with
tonsillitis and throat infections, et cetera, and s ore
ears, et cetera.
So it was decided that they would take the
tonsils out. So I was still a minor in those days so,
obviously, it was my parents who would have been
talking to the doctors about it.
My parents were never counselled by the doctors
on what type of clotting products that they would u se
if I bled so there was no informed consent on what
they would use, and it's interesting that laterally ,
years after this has happened, and I sought to get my
records from the Glasgow trusts, which it was a hel l
of a fight to get them, I discovered a slip of pape r
demonstrating clearly that the intention from the
haematologist at the time was that I would be given
cryoprecipitate.
Someone put a line through that and put
Factor VIII but they didn't sign that letter to say
why they had chosen to change that course of
treatment.
|
2,055 | 21 | QUESTION:
We can have a look at that document. It's 105600 3,
please, Paul. If we could just have -- thank you.
"This patient is a" -- we've got the date
10 June 76:
"This patient is a haemophilia carrier and has
been given ..." and as you said "cryoprecipitate" i s
crossed out and "Factor VIII concentrate" handwritt en
over by the haematology staff.
"After-care: routine plus", and then again it's
crossed out and we have "Factor VIII" written over
that, "... the latter under the direction of the
haematology department", et cetera.
You've subsequently discovered the particular
factor products that you were given in 1976. What
were they?
ANSWER:
Hemofil and I think Profilate was the other one.
|
2,056 | 21 | QUESTION:
You have said you don't think your parents receiv ed
proper counselling about the nature of the products ?
ANSWER:
Mmm.
|
2,057 | 21 | QUESTION:
As far as you are aware were your parents told
anything at all about any risks of infection
associated with such products?
ANSWER:
No, not at all. In fact, my mother expressed sho ck
years later after I discovered what I'd actually be en
given. She said, "I had no idea. I assumed that w hat
you would be given was British products". The idea
that, you know, I was being injected with blood
products which we now know were 100 per cent risk o f
hepatitis and the source form where they same, whic h
was disgusting, and it would have absolutely broken
the protocol of how we collected blood in this
country.
You know, why on earth would you go to the
United States where people, the wrong type of perso n
is attracted because they are paid for their blood,
when you have a system in the UK here where that --
it's a gift, you know. So, yes, it blows my mind t hat
any doctor, you know, would be happy to take that r isk
and I'm afraid to say that I know that by 1976 it w as
quite evident that the knowledge of that had been
there for some years of what those risks were but t hey
most certainly were not imparted to my parents and, of
course, I was a minor so I had no opportunity of
discussion at all.
|
2,058 | 21 | QUESTION:
There was a comment a doctor made to your mother on
the day you were discharged from hospital which has
resonated over the years with you and, prior to her
death, with your mother. What was that?
ANSWER:
Yes. I'd had a pretty traumatic month of being i n
hospital. I lost a tremendous amount of blood.
I haemorrhaged very, very badly -- very poor nursin g,
I have to say, post surgery. There was a nurse on the
ward insisted that I swallow down large lumps of me at
and they tore the clots away from the back of my
throat and, well, I actually almost died. The prie st
was called and I was given the last rite's. I had the
curtains drawn around me for a whole week because t hey
were just expecting me to pass. I just couldn't st op
haemorrhaging.
I did recover and on the day that I was
discharged the doctor came to see my mother and he
said to my mother, "Well, I'm glad that Colette's
finally recovered and she's going home but your
daughter will never be the same again".
That for me, knowing what I know now, was quite
a significant thing to say. My mother sadly didn't
question it, but those were the days of the doctor' s
paternalistic attitude. You didn't question them.
The white coat knew everything and you just didn't
question. So my parents, my mother particularly
because she was the one that was, you know, looking
after me, my father was at work so he wouldn't come in
and question, but my mother was very upset for year s
after that and regretted not questioning.
|
2,059 | 21 | QUESTION:
You didn't receive any further blood products bet ween
1976 and 1982 following the treatment you have just
described, although you did have bleeding episodes
during that time?
ANSWER:
Yes, I did. I actually at one point bled for sev eral
days from a duodenal ulcer. I did suffer, well, as
I said I never stopped having daily nose bleeds and
they could stretch up to several hours but I was ne ver
offered any treatment or encouraged to come in and
have treatment.
|
2,060 | 21 | QUESTION:
In that period those five or six years before we get
to what happened in 1982, what, if anything, do you
recall about how you were feeling and your physical
health generally?
ANSWER:
Well, it took me a long time to recover from all that
blood loss and, you know, physically drained. I ha d
dropped down to six and a half stone. It took me
a very long time, but one thing that never was righ t
again was my levels of energy. I would describe it as
almost permanent malaise and as a young woman, 17 a nd
growing into, you know, future adulthood, it's a ti me
of your life when you expect to be full of energy a nd,
you know, bouncing around.
I used to sleep for hours. I remember one
occasion I think I slept solidly for 24 hours. My
mother kept coming in to try and get me awake and
I just would drift off again. I was exhausted all the
time.
|
2,061 | 21 | QUESTION:
By 1982, you'd moved to Kent and you were either about
to start or had started training as a nurse.
ANSWER:
Yes.
|
2,062 | 21 | QUESTION:
You were treated in Kent, in Tunbridge Wells, aga in
with blood products, factor products. What can you
recall about that? What was the intervention and w hat
happened?
ANSWER:
I had developed quite, you know, marked pain in m y
back and I had terrible sciatica down one side of m y
body and they identified I had scoliosis but also
I must have had a trapped nerve and it was decided
that the course of action to get me sort of back in to
my training was to do a spinal manipulation under
general anaesthetic.
The cover for that would be DDAVP. The advice,
as I understand it from letters that, you know, I'v e
now seen laterally, to my GP and I think Dr Townsen d,
who was the orthopaedic surgeon who was doing the j ob,
would be that he would liaise with Dr Taylor at
Penbury Hospital, which was the nearest hospital, a nd
although I think I had at that point I was register ed
at the Royal Free but they were sending the advice
down to the local hospital, and it was quite clear in
that letter that I was supposed to be given safe --
well, what I know now would be a safer blood produc t.
|
2,063 | 21 | QUESTION:
What blood products were you in fact given in the
course of this surgery in 1982?
ANSWER:
I was given Factor VIII.
|
2,064 | 21 | QUESTION:
You've subsequently ascertained and we will come on
later to subsequent meetings you had with the docto r
in question, but you've subsequently ascertained th at
it was probably Factor VIII products from
a pharmaceutical company called Immuno?
ANSWER:
Yes.
|
2,065 | 21 | QUESTION:
On this occasion in 1982 were you advised now as an 0
adult or informed about any risks of infection or
given any -- involved in any discussions --
ANSWER:
No.
|
2,066 | 21 | QUESTION:
-- with the doctor about different products?
ANSWER:
No. In fact, what actually happened was, as ofte n
happens with mild haemophiliacs because they are no t
treated prophylactically, they don't have bottles i n
front of them with warnings or labels or anything.
What you are presented with is the syringe with the
already made-up product ready to inject into your a rm.
So there's nothing, you know, to say that there's a ny
risk there, so there was nothing evident for me, an d
most certainly there was no discussion. You simply
turned up and said this is your clotting products, and
they were injected and that was it.
|
2,067 | 21 | QUESTION:
Now, after you had had those products in 1982, in the
period 1982-1983 you began to feel very unwell and you
went to see the GP or, indeed, more than one GP.
ANSWER:
Yes.
|
2,068 | 21 | QUESTION:
What kind of illness were you or symptoms were yo u
experiencing and what reactions did you get from th e
GPs?
ANSWER:
I was starting to lose weight rapidly. My colour was
odd. I felt highly nauseous. Just smelling food m ade
me feel sick. I had no energy. I just generally f elt 1
really, really bad and that's why I consulted with the
GP.
I was, at that point I was working in a surgical
ward and I was struggling to get through the day an d
so I knew that there was something not right. So
I consulted with two GPs and their attitude was,
"I think you might be just imagining the symptoms o f
some of your patients that you are nursing", a pret ty
appalling thing to say.
No, I wasn't imagining. The physical
evidence -- also I was saying to them, "Well, look, my
urine's really dark, you know, that's not right and
I just feel terrible and I feel sick. I want to be
sick all the time". No investigations, no follow-u p,
nothing.
On this one particular day I just simply
couldn't get up and go to work and my sister said,
"I'm going to call the GP out", so she called the G P
out and he did the same thing. Completely dismissi ve,
didn't ask about any history or, you know, why this
might be happening and just said, "Oh, you know, sh e's
fine. She can go back to work. There's nothing wr ong
with her".
|
2,069 | 21 | QUESTION:
Now, you did go back to work --
ANSWER:
Yes.2
|
2,070 | 21 | QUESTION:
-- as a nurse.
ANSWER:
Mm-hm.
|
2,071 | 21 | QUESTION:
There came a point in 1983 when you were diagnose d
with hepatitis B but not by your GP or via the GP
route. Can you tell us how that diagnosis came abo ut.
ANSWER:
Yes. This particular day I had been left to draw up
various injections and drugs for the next drug roun d
that was going to happen in the afternoon. Sister had
gone off the ward and left me to do that and I can
remember, it was an old fashioned hospital and I ca n
remember the old china sinks they had, hanging over it
thinking, "Oh God, I'm just not going to get throug h
this. I don't know how I'm going to keep going but
I have to do this".
Just at the point where I was standing doing
that, across the doorway came a lovely chap. He's now
an eminent liver surgeon at King's, but he was
a registrar in those days, called Nigel Heaton, lov ely
chap, he came past and then he walked backwards and he
looked at me, and he said, "Colette, can I have
a word? Come here". Anyway, I went and spoke to h im
and he said, "Just turn around and look at me". He
said, "Do you know you're jaundiced? How do you
feel?" I said, "I've been feeling terrible". He
said, "Why haven't you been to a doctor?" I said, "I
3
have. Three times I have consulted with a GP". He
shook just his head and he said, without knowing it ,
"I think you've got hepatitis". He said, "You look
dreadful. You are jaundiced".
So he said, "Look, stop what you are doing."
I said, "Oh, I'll get into terrible trouble", becau se
the sister that I worked for, she was an old tartar of
an Irish sister. You didn't dare cross her and not do
your job because she'd be on you. He said, "I'll d eal
with her. You go off and do what you know to do". He
said, "You know how to test the bilirubin in your
urine". He said, "Do that, meet me on the other wa rd
next door, a female surgical, and I will take a sam ple
of your blood but I won't sent it locally. I will
sent it off to London", and he did. And he said, " Get
your" -- because we used to wear the nurse's cape i n
those days, "Get your cape and go home". He said,
"You should not be on this ward, you're not well, a nd
don't come back until I tell you".
I said, "Okay", so I went home and told my
sister and she said, "Oh my Lord", she said, "I kne w
there was something wrong with you". Okay, so we
waited a week and he phoned me at home and said, "I 'm
sorry to tell you, Colette, but", he said, "you hav e
got hepatitis B and you can't come back to work".4
So I then had to phone up and discuss this with
my training tutor and as soon as the hospital found
out they couldn't wait to get rid of me, and I aske d
about, "If I get over this and I'm well enough, can
I come back and finish my training", and I was told ,
"No".
|
2,072 | 21 | QUESTION:
Can you recall what, if any, treatment you receiv ed
for the hepatitis B at that point in time?
ANSWER:
None.
|
2,073 | 21 | QUESTION:
What impact did that attack of hepatitis B have o n you
at the time? Obviously, you weren't able or weren' t
permitted to go back to work. How else generally d o
you recall feeling?
ANSWER:
Desperately ill for a long time. In fact, I was ill
with that hepatitis for a further two years and
I didn't -- I wasn't able to return to work until 1 985
and I was reliant on my sister keeping me living wi th
her and looking after me, and she was a young Mum a nd
struggling herself because she actually had also be en
infected the same year, earlier that year, after he r
first baby was born.
So there you had two of us infected from the
same hospital by the same doctor and neither of us had
any follow up.
|
2,074 | 21 | QUESTION:
Now, I'm going to ask you to look at a letter. C an we 5
have up on screen please 1056010.
You will see, Colette, this is a letter dated
22 February 1984 and it's from the Royal Free from
Professor Kernoff, consultant haematologist, to you r
GP and it's about you and your sister; is that righ t?
ANSWER:
Mm-hm.
|
2,075 | 21 | QUESTION:
When did you first see this letter?
ANSWER:
This morning.
|
2,076 | 21 | QUESTION:
You've asked for your medical records over the ye ars
on a number of occasions --
ANSWER:
Mm-hm.
|
2,077 | 21 | QUESTION:
-- from the Royal Free; is that right?
ANSWER:
Yes. I actually had to write not once but three times
to the Chief Executive to complain because they wou ld
send out parts of my records. Interestingly, and m ost
haemophiliacs will connect with this, general recor ds
are kept in a separate part of the hospital but the
blood treatment records are kept in the haemophilia
centres, so they are separated, so they have comple te
control over them. So when I requested my full
records I was getting them in portions, bits here a nd
bits there.
That letter -- that's the first time I've seen
that is today. I've never seen that before but tha t
makes it all the worse, that first sentence there,6
because as I read it it's quite obvious they were
aware of the risks of using commercial products.
|
2,078 | 21 | QUESTION:
Just for the sake of clarity, this is a letter
supplied to the inquiry by the Royal Free and shown by
the Inquiry to you.
ANSWER:
Yes.
|
2,079 | 21 | QUESTION:
If we just look at it, it refers to a phone
conversation on 20 February of that year and then i t
says this:
"Because of the risk of hepatitis after
transfusion of Factor VIII concentrate being very h igh
in infrequently-treated patients, we try to minimis e
blood product exposure when treatment is needed to
prevent or stop bleeding."
Just pausing there, Colette, were you ever told
at the time, 1993-1984, that there was a very high
risk of hepatitis for infrequently-treated patients
such as yourself if Factor VIII products were used?
ANSWER:
No, never, and this makes it all the more horrifi c
because exactly a year later the Royal Free reinfec ted
me with hepatitis C.
|
2,080 | 21 | QUESTION:
Now, were you told anything at all at the
time about the availability of DDAVP?
ANSWER:
I don't honestly recall. I was mildly aware of t he
fact that the DDAVP was mentioned but there weren't
any discussions --
|
2,081 | 21 | QUESTION:
Was there any --
ANSWER:
-- that I can recall.
|
2,082 | 21 | QUESTION:
-- discussion with you about there being this 8
hierarchy of treatment and for you or your sister
ideal was DDAVP, if that failed or there was to be
a major procedure, cryoprecipitate, and only if tho se
two were unavailable, effectively, Factor VIII? Wa s
that discussion ever held with you?
ANSWER:
No, because if it had been have been then I would have
been aware there was risks involved in this treatme nt
and I wasn't aware of the risks at that stage, no.
|
2,083 | 21 | QUESTION:
If we then just look at the next paragraph there' s
a reference to a number of the Professor's patients
with mild Factor VIII deficiency being treated by G Ps
with DDAVP and that is suggested for the GP to
consider as a practical proposition.
Then if we go over the page please, Paul, we'll
see the second paragraph on that page, Colette, we' ll
see the professor saying:
"If you have problems in obtaining supplies of
DDAVP, I should be willing to give you and your sis ter
a limited supply to keep at home."
Then there's reference to record sheets being
completed for the purpose of national data being
collected, the view being expressed there that we'r e
interested in assessing the blood product saving
impact of DDAVP.
Do you recall whether at this time, 1984, you or 9
your sister were given a supply of DDAVP at home?
ANSWER:
No.
|
2,084 | 21 | QUESTION:
No, you don't recall or, no, you weren't given?
ANSWER:
No, we weren't given a supply, no.
|
2,085 | 21 | QUESTION:
Were you given -- it seems unlikely if you weren' t
given the DDAVP, but was anything told to you about
record sheets or the collection of national data or
assessment of the impact of DDAVP?
ANSWER:
No.
|
2,086 | 21 | QUESTION:
Then if we have the last paragraph, please, Paul,
first sentence. It says this:
"If treatment with DDAVP is unsuccessful blood
product therapy may be indicated and I think it is
important again for you and your sister to apprecia te
this."
Were there discussions with you about the
potential for future need for blood product therapy ?
ANSWER:
I mean, it seems quite incredible to me that, you
know, this advice and, you know, suggestion of
treatment, et cetera, and, you know, Dr Taylor woul d
be established with the local hospital and Dr Taylo r,
Dr Taylor not only did he not impart to me when he was
busy injecting the commercial product into me, not
only did he not impart to me the risks of what he w as
doing, but he also failed to tell my sister in the 0
earlier part of that year and, in fact, he refused to
see her in clinic.
She twice tried to get an appointment to see him
and she was rebuffed. She then approached him when
he -- because she was nursing in the other hospital
that was linked to the one I was working in. She
actually approached him on the ward twice and said,
"I need to speak with you", and he rebuffed her aga in
and actually told her off for being unprofessional in
approaching him, you known, whilst on the ward and
that, you know, "See me in my clinic", and she said ,
"I've tried twice and I can't get an appointment wi th
you".
So the communication level was utterly
disgraceful and, you know, when I think about the w ay
she was treated the obstetrician when my sister was
rushed back into hospital after a massive haemorrha ge
actually stood at the end of her bed and said, "peo ple
like you shouldn't be allowed to have children".
So you can see the level of contempt that we're
talking about, so all this -- this letter would
suggest that there's great communication going on a nd
advice. No, that's not the case.
|
2,087 | 21 | QUESTION:
So you have said none of this was imparted to you by
Dr Taylor?
1
ANSWER:
No.
|
2,088 | 21 | QUESTION:
It's a letter between the Royal Free, [redacted], and
your GP. Was any of this information shared with y ou
by your GP or by the Royal Free Hospital?
ANSWER:
No, no.
|
2,089 | 21 | QUESTION:
That's 1984. In 1985, you were given treatment a gain
for a third time with Factor VIII products.
ANSWER:
Yes.
|
2,090 | 21 | QUESTION:
Where was that treatment given?
ANSWER:
The Royal Free.
|
2,091 | 21 | QUESTION:
You were given treatment with Factor VIII made as you
understand it by Alpha Pharmaceuticals?
ANSWER:
(The witness nodded)
|
2,092 | 21 | QUESTION:
Were you given any options to have either
cryoprecipitate or DDAVP instead?
ANSWER:
No.
|
2,093 | 21 | QUESTION:
Were any of the matters set out in that letter
discussed with you by the Royal Free at the time yo u
were given this Factor VIII treatment in 1985?
ANSWER:
No, no. And really it's quite appalling because they
reinfected me with non-A non-B, or hepatitis C as i t's
now known. Not only did they infect me but they
didn't follow me up. They would have known using
commercial factor on me was high risk. They've lai d
it out the year before, what's the safer option, so2
they know, so they knew what they were doing when t hey
took that bottle all of the shelf.
I would suggest that they were using up old
stock as a lot of haemophiliacs had happen to them,
and that's what they did, they took that off the sh elf
knowing it was high risk and they used it on me, an d
that particular batch is registered in the American
courts, because I went to America, you know, and it
was acknowledged in the American courts as a defect ive
batch.
|
2,094 | 21 | QUESTION:
One of the particular concerns you have about the fact
you were given commercial Factor VIII products in 1 985
was the state of knowledge by 1985 about, at the ve ry
least, the risk of HIV.
ANSWER:
Absolutely, and that's what horrified me because
I realised that, you know, they infected me with no n-A
non-B, but it could have been HIV. I mean, for man y
haemophiliacs they will know the pattern here. It' s
like a Russian roulette every time you're treated.
HIV was the only thing I wasn't exposed to.
But I'm horrified that they did that to me in
'85 and retrospectively, you know, in the years of
campaigning and researching and so on, that I can s ay
because it's in the public domain and it's in
a published book called, "HIV the myth" Dr Charles 3
Rizza, who was Oxford Haemophilia Centre director
actually is in print saying, "By the mid-'70s and ' 80s
we knew all the products were infected". Why the h ell
did they use them then for a further ten years? It
doesn't make sense.
|
2,095 | 21 | QUESTION:
Having been given those factor products in 1985, you
remained a patient at the Royal Free Hospital and i n
June 1987 you married your first husband and in the
early spring time of that year, prior to your first
marriage, you and your husband Keith attended the
Haemophilia Centre at the Royal Free for some advic e
and genetic counselling?
ANSWER:
Yes.
|
2,096 | 21 | QUESTION:
What had particularly prompted your attendance on that
occasionally and who did you see?
ANSWER:
I'm pretty sure it was Eleanor Goldman and the pr ompt
was that we were getting married, we were going to
live abroad, management of my haemophilia and
naturally genetic counselling because we intended t o
have children. So I felt it was important for Keit h
to fully understand what the risks were if we had
children, a 50/50 risk of passing on the haemophili a
gene. Were I to need any haematological interventi on
or care, you know, how we would go about setting up
advice from England so that whoever was, you know,4
looking after me potentially when we moved would kn ow
what they were doing and that was the main purpose of
going in. That's what was discussed.
|
2,097 | 21 | QUESTION:
You and Keith were planning a move to Oman in the
Middle East?
ANSWER:
Yes.
|
2,098 | 21 | QUESTION:
You said in your written evidence that there was
discussion on the issue of you having had hepatitis B?
ANSWER:
Yes.
|
2,099 | 21 | QUESTION:
An episode from which you had recovered from, and
there was some particular discussions about hepatit is
B and issues of immunisation. Is that right?
ANSWER:
I hadn't -- what they'd found was that I, despite
having had it chronically for two and a half years,
I hadn't raised enough immunity to protect me from
getting it again, so they needed to vaccinate me, s o
I had a series of three vaccinations so that, you
know, I could mount some form of level of protectio n
within my body.
|
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