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2,400 | 24 | QUESTION:
You have said you wonder how these organisations
distinguish between patients and how they
differentiate between stage 1 and stage 2?
ANSWER:
I do, because my stage 1 is very close to what is
stage 2. I can totally have respect for anybody wh o
is in stage 3, stage 4, because they are totally
suffering different from what we are, but it is ver y
difficult to swallow, that they can make that
difference. You know, it just came in the post, an d
my wife and I couldn't understand. This thing
appeared in the post, that you were being offered
this. There was no consultation before it or
compensation since it has been put forward.
|
2,401 | 24 | QUESTION:
What you have said in your statement is:
"The payments are better than nothing, but they
are no comparison on my lost earnings, due to my
inability to work full-time. They simply do not
equate to the same."
ANSWER:
Correct.
|
2,402 | 24 | QUESTION:
Mr F, I don't have any more questions for you. Is 8
there anything else you would like to say?
ANSWER:
No. I'd just like to thank everybody for their h elp,
and to Sir Brian, and probably to my wife. There i s
a true saying, I suppose: "For better, for worse, f or
sickness and health". It is true.
|
2,403 | 25 | null |
2,404 | 26 | QUESTION:
Q.ANSWER:
A. |
2,405 | 26 | QUESTION:
Ms K, you are here to talk to the Inquiry about you r
father who we obviously won't name and the impact o n
him and on your mother and on you of his infection
with HIV?
ANSWER:
Yes.
|
2,406 | 26 | QUESTION:
Your Dad had severe haemophilia A?
ANSWER:
Yes.
|
2,407 | 26 | QUESTION:
And how did that affect him generally?
ANSWER:
He used Factor VIII a lot. At the point that
I started school he had been pretty much wrapped up in
cotton wool and sort of the family as a whole had
tried to keep him away from sports and any activiti es
where he might injure himself.
He wore a brace on his leg because he'd had an
accident, I believe it was in a cricket match when he
was at prep school, and due to a bleed in his leg, the
lower half of his leg had got quite badly withered and
it's one of the first things I remember about my Da d
actually.
|
2,408 | 26 | QUESTION:
You've said in your statement his condition wasn't
particularly stable and he did suffer a number of
bleeds.
ANSWER:
He did and sometimes it was quite difficult becau se
when somebody you care about has a condition that's
not particularly stable and they can get very unwel l
at short notice and be extremely uncomfortable, you
try and predict when it's going to happen and you'r e
constantly rushing around. So if he sort of bashed
his leg on a table I would completely freak out and
just sort of be ready to help and just sort of worr y
that something bad was going to happen all the time .
|
2,409 | 26 | QUESTION:
He was under the care of the Oxford Haemophilia Cen tre
for quite a long period of time.
ANSWER:
Yes.
|
2,410 | 26 | QUESTION:
Your understanding is that he received Factor VIII
whilst he was there?
ANSWER:
Yes.
|
2,411 | 26 | QUESTION:
What you said in your statement is that you were as
a family led to understand that he was given
Factor VIII from the United Kingdom?
ANSWER:
Yes, we were always told it was Scottish Factor V III.
|
2,412 | 26 | QUESTION:
But then a point came in the 1980s, mid-1980s or ea rly
1980s, when he moved to the care of St Thomas' ?
ANSWER:
Yes. My Dad had worked for [redacted] and my Dad left
the company and went to work for [redacted].
|
2,413 | 26 | QUESTION:
So he moved to London and he was under the care at
St Thomas' of Mr Savage?
ANSWER:
Yes because he was working in London, we were sti ll
living outside London at the time in Oxfordshire bu t
he was working in London so it was much easier to
receive care near work.
|
2,414 | 26 | QUESTION:
The family's understanding was that St Thomas' he w as
receiving imported un-heat treated Factor VIII?
ANSWER:
Yes.
|
2,415 | 26 | QUESTION:
Now you have not yet been able to get hold of your
Dad's medical records?
ANSWER:
No.
|
2,416 | 26 | QUESTION:
I know you are trying to and want to draw them to t he
Inquiry's attention if you do. Is this right then,
the evidence you are giving is based upon your
understanding and recollection of discussions and
conversations within the family home?
ANSWER:
Some of it's based on what I saw when I was at va rious
hospitals with my Dad. Some of it's based on my
recollections of those and some of it is what I was
told by Mum and Dad.
|
2,417 | 26 | QUESTION:
During the years with we're most concerned at prese nt
in 1980s you were, in fact, a teenager?
ANSWER:
Yes.
|
2,418 | 26 | QUESTION:
You used to help care for both your Dad and your Mu m
who had her only health difficulties at the time?
ANSWER:
Yes.
|
2,419 | 26 | QUESTION:
Your parents were quite open with you about the
medical treatment that your Dad was receiving?
ANSWER:
Yes, they were. I used to inject my Dad with
Factor VIII and, yes, it was just a normal part of
daily life because my Mum was also disabled and
sometimes also needed help. She was in a wheelchai r
so she needed quite a lot of assistance. So it was
just something that was normal. It was the only
family I'd grown up in so I didn't know anything el se.
|
2,420 | 26 | QUESTION:
You were quite young I think when you started to he lp
your Dad with receiving the Factor VIII?
ANSWER:
Yes. I was just short of five.
|
2,421 | 26 | QUESTION:
Now, how and when did your Dad find out that he had
been infected with HIV?
ANSWER:
My Dad had read a lot of the newspaper stories ab out
HIV and AIDS and he contacted the hospital regardin g
getting a test and what he told me afterwards was t hat
when he went for the test that he was told that he' d
already been tested and he was positive, and -- sor ry,
do you mind if I refer to my statement for dates.
|
2,422 | 26 | QUESTION:
Of course not, Ms K, absolutely. You deal with thi s
in your witness statement at paragraphs 7, 8 and 9.
ANSWER:
Yes. That's what I thought. I still can't remem ber
the exact date it's not something that's come back to
me. Yes, he did find out in 1986 and, yes, it was
around two years, maybe slightly over two years, th at
they had known because my Dad gave blood regularly on
request of the Haemophilia Centre because they were
trying to find a cure for haemophilia and he wanted to
help with that.
|
2,423 | 26 | QUESTION:
So when he went to St Thomas' in 1986 concerned abo ut
what he'd read and asking to be tested, that was th e
point at which he was told that there was already
a test effectively on his records that was a positi ve
test from about two years previously?
ANSWER:
Yes.
|
2,424 | 26 | QUESTION:
And he hadn't been told that?
ANSWER:
He hadn't been told. He was very upset at the ti me.
He was told that it was some sort of an admin or
clerical error and everybody seemed to be very sorr y
about it but obviously it was very upsetting becaus e
he was concerned that he might have infected my Mum .
|
2,425 | 26 | QUESTION:
Presumably from what you say he wasn't even aware t hat
he had been tested some two years previously?
ANSWER:
No, he had specifically given blood on a regular basis
for them to find further treatments and cures for
haemophilia. Nobody ever mentioned that he was bei ng
tested for anything else, as far as I'm aware.
|
2,426 | 26 | QUESTION:
As far as you know was your Dad provided with any
information or advice at any time when he was being
given Factor VIII about any risk of infection?
ANSWER:
There was no general information, anything about HIV
or HTLV or anything like that. My Dad did actually
have hepatitis B twice. I remember it, firstly, wh en
I was very young he just turned bright yellow for
a number of months and I am afraid I thought it was
quite funny because I was quite little at the time and
it happened again when I was quite older.
We were given advice specifically after he got
hepatitis B about that particular infection but we
weren't given general advice about infections or
anything that could happen with the blood. But
anecdotally from friends who were also haemophiliac s
there was just this vague idea that you might get
something and a vague idea that it would probably
usually be Hep B or something like that, but ...
|
2,427 | 26 | QUESTION:
When your Dad was told his diagnosis in or around 1 986
at St Thomas', what information or advice about his
condition was given to him?
ANSWER:
All I remember from this time was the information that
we were given was all about protecting ourselves fr om
Dad. It was about the risk that he might present t o
us.
At the time, I don't know if anyone remembers back
this far they, first of all, thought that only 1 in 10
people with HIV would go on to develop full-blown
AIDS.
I think they were saying it was 3 or 4 out of 10
at the point we found out my Dad was HIV positive a nd
about 7 out of 10 at the point that he died; so we
almost thought we were managing a potential conditi on,
not something that was definitely going to happen a nd
everything we were told separate laundry, separate
plates, washing up separately, all that kind of thi ng
was supposedly to prevent Dad from transmitting HIV to
us.
|
2,428 | 26 | QUESTION:
What you have said in your statement Ms K is
Mr Savage, the consultant, advised that your Dad
should use protection when having sexual relations, to
use and wash his sheets separately, to use separate
utensils and wash them in boiling water, not to tak e
suits to the dry cleaners and he was warned of the
risk of passing the infection on with blood to bloo d
contact and then you've said this:
"There was far more information about how not to
infect others than about how to keep yourself safe and
well."
ANSWER:
Yes, that was exactly it. I mean, everything was
about how to keep us apparently safe from Dad and i t
seemed very strange and upside down.
|
2,429 | 26 | QUESTION:
Now, what, if any, advice was given to you and your
Mum about the need to be tested?
ANSWER:
My Mum was advised that she would need to be test ed
and that the tests would need to be repeated
six-monthly intervals and I didn't see any need for me
to be tested.
I used to be asked quite regularly if I had had
needle stick injuries when I went to hospital with Dad
and I think it's slightly different from working in
hospital than when you're actually looking after
a member of your own family, you tend not to get
needle stick injuries, and I just never had one and
they still insisted that I was tested.
|
2,430 | 26 | QUESTION:
What can you recall of that experience?
ANSWER:
It was not particularly pleasant. I'm still
completely phobic about blood tests and I struggle
being close to needles at all because I couldn't se e
a reason why I could possibly have HIV because I'd not
a needle stick injury and, by this point, I'd done 0
a lot of research into the other transmission metho ds
and I just thought they were suggesting something t hat
was -- just thinking how would I have got it?
What would I have done and I was trying to work
out what they were implying by that and I got very
upset about it because I just thought, well, how wo uld
I have got it. And I went to the hospitals and had to
be tested and I was really, really not wanting to b e
tested and I had to -- I basically got restrained.
|
2,431 | 26 | QUESTION:
You were 14 years old?
ANSWER:
(The witness nodded)
|
2,432 | 26 | QUESTION:
What about the testing of your Mum. What was the
effect on your Mum of having to be tested for HIV?
ANSWER:
My Mum was nervous and cautious of doctors and th e
medical profession anyway because she had contracte d
polio when there was an issue with a water treatmen t
plant in Oxford, I think it was 1956, and because s he
was wheelchair-bound she felt very vulnerable and s he
was just terrified and she had been through a lot w ith
becoming disabled with polio about the time she hit
puberty and she became very angry, very depressed,
alternately, just very vocal and very withdrawn.
|
2,433 | 26 | QUESTION:
She was particularly fearful because in the two yea r
period that you've mentioned she had your Dad had h ad
unprotected sexual relations? 1
ANSWER:
Exactly, and we both tried very hard but I think Mum
was actually angry at Dad even though he didn't kno w,
she was very frightened for herself and there was j ust
so much fear at the time and the newspaper stories
that I remember were just saying that people would
just bleed to death from every orifice and it was j ust
absolutely terrifying.
|
2,434 | 26 | QUESTION:
Indeed you said in your statement that in terms of the
immediate impact on you of being told your Dad's
diagnosis was you believed Dad was going to die of the
plague?
ANSWER:
Well, that's what it was. It was just the plague .
That was how HIV and AIDS were described in the med ia
and that was the information that we had to hand.
|
2,435 | 26 | QUESTION:
How did your Dad react to the diagnosis? What was the
impact upon him mentally and emotionally?
ANSWER:
My Dad was very, very sociable and he was very st rong
and he always tried very hard to remain calm and
compassionate and because I know different now but
what we all thought at the time was that this was
something accidental, that it wasn't something
preventable and I think my Dad put on a very strong
face for us but he was obviously very badly affecte d.
Because he had haemophilia my parents struggled to
get mortgages and because of my Mum being disabled as 2
well and they both experienced quite a lot
discrimination because of their disabilities becaus e
things were different in the 1970s and '80s, and my
Dad had made a very, very big deal of putting lots of
money into different savings plans and insurances a nd
making sure that if anything ever did happen to him
that we would always be provided for and when he fo und
out he was HIV positive, it was at about the time t hat
a lot of the insurance companies, loan companies an d
mortgage providers were saying that they would just
not pay out for anyone, even if they had just had
a test regardless of the result, and we were all ju st
very afraid.
My Dad tried very, very hard to be strong and he
always tried to explain things in a very reasoned a nd
calm way to me but there was a lot of fear. We wer e
just very, very scared all the time.
|
2,436 | 26 | QUESTION:
You've said again at this early stage after the
diagnosis, in terms of your mother, it gave rise to
terrible issues for her around loving your Dad. Sh e
had a physical fear of the possibility of becoming
infected.
ANSWER:
Exactly and because Mum had been through so much
already, neither of us knew how to cope with this a nd
my Mum, the first person she'd turn to when she was
3
frightened or upset was my Dad, and she wanted
physical comfort and yet she had been told she
shouldn't have that and -- sorry, I find this hard to
talk about. Obviously, I was as teenager at the ti me
and we're talking about my parents and sex, so it's
a little bit embarrassing, please excuse me.
It did cause problems. My Mum would be
alternately very loud and angry and withdrawing, an d
then she would try and be normal towards my Dad and
none of us knew how we were supposed to behave
because, you know, he was my Dad, Mum's husband, an d
we both loved him and we were afraid that he was go ing
to become very unwell, possibly die, and we wanted to
look after him and we wanted to comfort him but at the
same time we were being told that he was dangerous and
we didn't know what to do.
I don't know how you're supposed to reconcile the
fact that you love someone and want to look after t hem
but that you've been told that they could kill you.
|
2,437 | 26 | QUESTION:
Your Dad's physical health began to decline and you 've
described how by September of 1987 he had full-blow n
AIDS?
ANSWER:
It wasn't actually officially described such by t hen.
What happened in September 1987 was that he started to
get the flu and we knew by then that the flu was th e 4
start of full-blown, but it had to carry on for som e
time. I can't remember what it was actually called
but my Dad had this flu that lasted several months and
it was a really, really awful debilitating flu. I' ve
had pneumonia since and it was incredibly mild
compared to this flu my Dad had.
It just made him incredibly weak and we were all
very frightened because we realised that was going to
be the start of what full-blown AIDS was because
that's what we'd been told would happen. He would
have a flu that would last a long time and that wou ld
be the start of it.
|
2,438 | 26 | QUESTION:
He had been a tall, strong man and his body weight
reduced drastically and you said he became skinny a nd
weak and out of breath almost like he had hepatitis B
again as he was quite yellow-ish?
ANSWER:
He was -- he got a sort of pallor a sort of yello w-ish
grey pallor that I recognised in a lot of other peo ple
since and my Dad was 6-foot 6, obviously a very big ,
strong guy, and it looked as though he was just
shrinking before our eyes and he'd always tried to
keep himself as fit as possible and his muscles jus t
completely wasted away.
I took a photograph when we went for a walk,
I don't remember exactly where, somewhere in Surrey , 5
and we got the photos developed and my Dad tore up and
threw away of photo of him because he was wearing
a sleeveless top and his arms were so, so skinny an d
he just couldn't bear to look at it.
|
2,439 | 26 | QUESTION:
What happened on Boxing Day 1987?
ANSWER:
It's somewhere between the start of the flu -- I was
told the start of the flu was sort of full-blown bu t
then I've also been told Boxing Day was the day he
officially went full blown, so I don't know where
exactly the definition lies. But I woke up on Boxi ng
Day and my Mum was screaming and she just wouldn't
stop screaming and I went into my parents' room and
I was, obviously, quite worried about what was
happening and because my Mum had paralysed legs and
could fall out of bed, one side of the bed was agai nst
the wall and that was the side my Mum slept on and my
Dad was on the other side, and my Dad was just
incredibly ill, pale, waxy, sweating, unable to mov e
and didn't really seem to be responsive when I was
trying to talk to him and my Mum was trapped in the
bed. We just didn't know quite what to do.
|
2,440 | 26 | QUESTION:
So you called an ambulance?
ANSWER:
Yes.
|
2,441 | 26 | QUESTION:
What then happened? I can take it from your statem ent
if that would be easier? So you phoned the hospita l 6
and asked -- you called the ambulance but they refu sed
to attend when your mother explaining what the medi cal
condition was and so you phoned St Thomas' and aske d
them to send an ambulance but it was some four hour s
before an ambulance arrived?
ANSWER:
(The witness nodded)
|
2,442 | 26 | QUESTION:
Your Dad was then taken to A&E. What happened, if you
feel able to say it, I can take it from your statem ent
otherwise so please don't worry if you can't. How was
he cared for in those first few days in hospital?
ANSWER:
He wasn't. He was left on a gurney in a little s ide
corridor in A&E.
|
2,443 | 26 | QUESTION:
You have said in your statement, Ms K, that you
remember your Dad being hungry and thirsty, struggl ing
for breath, getting bruises from the trolley becaus e
it wasn't a proper bed.
ANSWER:
Yes.
|
2,444 | 26 | QUESTION:
After a couple of days he began to receive treatmen t
and to recover a little but then his condition
deteriorated again?
ANSWER:
Yes, it did.
|
2,445 | 26 | QUESTION:
The following month, as I understand it from your
statement, your Dad would recover a little, get wor se
again, he managed to go back to work for periods of
time but then he'd become too ill.
7
ANSWER:
Yes, that is right. The first infection he had w e're
told it was pneumocystis pneumonia and he had sever al
different treatments. He had one treatment that
seemed to work and then he got sick again and
eventually we ended up with something being flown o ver
from American that we had to sign off for, we had t o
sign some form saying that if all his organs failed
and he died as a side effect we wouldn't sue the
company. I don't even remember the name of the
company that made the drugs.
|
2,446 | 26 | QUESTION:
Your Mum was too upset to sign that document. Your
Dad was too ill, so you signed it.
ANSWER:
Yes.
|
2,447 | 26 | QUESTION:
What you've said in your statement:
"We had a dozen or so days when we left Dad
seeming well and improving in the hospital only to
find he was on the critical list and there were
messages on the answerphone by the time we got home ."
ANSWER:
Yes.
|
2,448 | 26 | QUESTION:
It was some months before your Dad, in fact, was we ll
enough to come home and by that time he was physica lly
unsteady, had lost more weight and was having
breathing difficulties?
ANSWER:
He was very, very frail and when he did come home he
was sleeping, sitting upright on a sofa in the livi ng 8
room.
|
2,449 | 26 | QUESTION:
He did go back to work but then developed another
infection?
ANSWER:
Yes.
|
2,450 | 26 | QUESTION:
You've described in your statement how he was at
a meeting at work, began to feel unwell and had to go
to the hospital and was told that he had a huge ble ed
into his kidney.
ANSWER:
Yes, that's right.
|
2,451 | 26 | QUESTION:
There was a lack of clarity as to whether that was
a problem caused by his haemophilia or AIDS-related
but it was then established it was AIDS-related?
ANSWER:
Yes.
|
2,452 | 26 | QUESTION:
Was your Dad in pain at this time?
ANSWER:
He never said he was in pain and he never complai ned
of pain but he showed a lot of symptoms of pain. H e
never liked complaining of being in any pain or
discomfort because he didn't want to worry Mum or
I and that went back as far as I can remember, way
back before he had HIV.
He was often appearing to be -- well, he was
conscious but not quite there and he often had the
shakes or be very hot or very cold and I think that
was because he was in a lot of pain and trying to d eal
with it without saying very much. 9
|
2,453 | 26 | QUESTION:
You put it this way in your statement:
"Every time Dad got an infection and survived it,
it was as though I got my Dad back but another part of
him didn't work."
ANSWER:
Yes, that's exactly how it felt, that he was grad ually
disappearing piece by piece.
|
2,454 | 26 | QUESTION:
Then there is came a point in time in 1988 he had
a range of health problems. You've described in yo ur
statement he had internal bleeds, he had the pneumo nia
you have referred to, he had tooth problems, he los t
feeling in his hands and feet, his eyesight started
going and his organs started giving up. He got sic ker
and sicker in hospital?
ANSWER:
Yes.
|
2,455 | 26 | QUESTION:
Your Dad died in October 1988.
ANSWER:
Yes.
|
2,456 | 26 | QUESTION:
How old was he at the time?
ANSWER:
He was 44.
|
2,457 | 26 | QUESTION:
How old were you?
ANSWER:
17.
|
2,458 | 26 | QUESTION:
In terms of the care he received before his death,
you've described the delay in waiting for an ambula nce
and the care on that initial admission to A&E. Wer e
there any other difficulties that he had accessing
treatment during this period?0
ANSWER:
We were quite worried about leaving him on his ow n
because the nurses and other staff weren't really
washing him, cleaning his teeth, he was having
difficulty getting food and drink and we were very
worried that he wasn't being looked after properly.
His sheets didn't seem to be changed, and we think
this is because he had AIDS the nursing staff appea red
to be quite dismissive and scared of him.
|
2,459 | 26 | QUESTION:
In the last four to five weeks of his life he was
receiving AZT treatment. What was that like?
ANSWER:
It was incredibly depleting. At the time we were told
it was this new wonder drug that would keep Dad wel l
and keep him safe but he needed blood transfusions , he
needed these things called super vitamins and AZT
seemed to make him anaemic, it made him lose even m ore
weight and there was virtually nothing left of him,
and it just made him really, really sick.
|
2,460 | 26 | QUESTION:
What was the experience that you and your Mum had
after his death when you were attended the registra r's
office to report his death?
ANSWER:
My Mum had been trying to avoid getting AIDS put on my
dead's death certificate. My Dad thought it was
important that his death would be recorded as being
from AIDS. At the time my Dad died it was
a notifiable disease. I don't know if it still is
1
actually, and we had a very difficult time at the
registrar's reporting his death.
|
2,461 | 26 | QUESTION:
Would you like me to read out that part of your
statement?
ANSWER:
Please.
|
2,462 | 26 | QUESTION:
You say this:
"The stigma did not end when Dad died. After his
death we attended the registrar's office to report
Dad's death. We were kept waiting a long time and
other people in the office were staring at us. Peo ple
spat at us and the tyres of my Mum's car were slash ed
whilst we were waiting."
ANSWER:
Obviously, I can't say definitely that the car wa s
vandalised because of what Dad had. We definitely
thought so at the time and there weren't any other
vandalised cars in the vicinity but I think what we
felt then and what I'm getting flashbacks to now is
a general feeling on behalf of the people at the
registrar's office it was just a mix of hate and fe ar.
They just didn't want us to be there, they didn't w ant
to deal with us and they were afraid of us.
|
2,463 | 26 | QUESTION:
In the period of time after your Dad's diagnosis
before his death you had already lived with the eff ect
of stigma, you and your Mum and Dad. You had
experienced it at school. 2
ANSWER:
Yes. I'd had a number of issues. It's not alway s
possible to know how people find out things that
you're trying not to tell anybody but it did become
known and it caused a very big problem which I trie d
to keep from my parents at the time because I didn' t
want to worry them and they were going through so m uch
already.
|
2,464 | 26 | QUESTION:
You've explained in your statement how you had to d rop
subjects or change classes because certain teachers
wouldn't teach you and you took months at a time of f
school partly because of visiting and caring for yo ur
Dad but partly because the school was deciding whet her
it was safe to have you attend?
ANSWER:
Yes.
|
2,465 | 26 | QUESTION:
In terms of social and family life you, your Mum an d
Dad during this period of time you'd stopped people
coming to the house for fear that the news would ge t
out or that ...
ANSWER:
We were worried that people would find out, once Dad
had had this flu that had lasted so long, the colou r
of his skin, the weight loss, et cetera, it was how
everybody described AIDS and we were afraid that
people would find out and they would cause us
a problem and the soon to be -- we were also afraid ,
obviously going out to restaurants or something 3
because we had been told to keep Dad's plates and
cutlery and things separate and we were afraid goin g
away somewhere because what would we do about sheet s
being laundered.
We sort of knew the science of the transmission.
My Mum and I had researched it, but at the same tim e
what we had been told officially was so much broade r
and so different that we didn't know if it would be
manageable and what if we went away and took
precautions and someone found out? What would happ en
to us? What would happen if we were in a hotel mil es
away from anyone we knew and someone found out? W o uld
they attack us? What would they do?
|
2,466 | 26 | QUESTION:
You say this, Ms K, in your statement:
"It's really hard to explain the level of fear we
felt. The stigma of HIV and AIDS at the time was v ery
great. It felt like we had done something wrong, t he
worse thing, and that we didn't have a right to exi st.
My parents already had disabilities and had suffere d
with discrimination throughout their lives but
everything just amplified."
ANSWER:
It did and I'm sorry if I'm not being very clear or
very coherent today.
|
2,467 | 26 | QUESTION:
You are being very clear and very coherent. If at any
time you want me to take matters from your 4
statement --
ANSWER:
I'm just getting a lot of flashbacks as I'm speak ing
to you and I'm finding it difficult to speak at the
same time as I'm having the flashbacks, so apologie s.
|
2,468 | 26 | QUESTION:
Once your father had died, you weren't
allowing to bury him. He had to be cremated.
ANSWER:
He had to be cremated and we had to produce
a certificate showing that he had been cremated. W e
were given a list of appropriate funeral directors to
use and I can't remember where we had to take -- it
was some official office we had to take the
certificate proving that he had been cremated.
|
2,469 | 26 | QUESTION:
You decided not to hold a funeral because you were so
worried about what might happen if you did?
ANSWER:
Exactly, and also neither of my parents were
religious.
|
2,470 | 26 | QUESTION:
In the period of your father's illness before his
death, what had the impact been in terms of his
ability to work overall and the financial impact on
the family?
ANSWER:
Obviously Dad had a lot of time where he was extr emely
5
unwell and unable to work. He was very lucky that he
was in a very senior managerial position and was
sometimes able to work from home.
The disadvantages of being anonymous because
I would really like to thank a lot of the people he
worked with who helped a lot, but a lot of his
colleagues, a lot of his team and most of his
department and a lot of the HR team covered up a lo t
when Dad was away and at the point that he died it may
have appeared in official records, though he had ne ver
taken a day sick in the past five years.
|
2,471 | 26 | QUESTION:
What was the impact of your Dad's death and everyth ing
that had gone before it on your Mum?
ANSWER:
My Mum completely totally felt to pieces. She
couldn't cope at all in any way, shape or form.
|
2,472 | 26 | QUESTION:
She suffered from depression, she ceased to be able to
work.
ANSWER:
She went through periods where she couldn't work. She
could work sometimes. She had very long periods of
time where she couldn't work. Something that happe ned
at the same time as this and I don't know if it's
connected, because my Mum had had polio most people
who got polio in the 1950s would die fairly soon
afterwards, within five to ten years, and because m y
Mum had lived into middle age they discovered aroun d 6
the time it happened to my Mum that the virus
reactivates in the body and can cause further
disability, which is exactly what happened to my Mu m.
|
2,473 | 26 | QUESTION:
You've explained in your statement how she became
actively suicidal?
ANSWER:
Yes.
|
2,474 | 26 | QUESTION:
You were attempting to care for her. You were
attempting to stop her attempts at self-harm?
ANSWER:
Yes.
|
2,475 | 26 | QUESTION:
That carried on for a number of years?
ANSWER:
It did, yes. Mum struggled very, very badly. Be cause
she had had a lot discrimination and felt that she had
had a lack of medical support with what happened to
her with the polio, it brought everything back with
what happened to Dad, because at the time my Mum
became wheelchair-bound being in a wheelchair had a n
almost similar level of stigma and I think it was j ust
too much for her.
She couldn't sleep. We had wooden floors because
it was easier for her to wheel her wheelchair along
and she just used to wheel up and down the corridor s
all night, singing not a particular song but just s ort
of lah lah lah, very strange. She used to set pans on
the stove to burn out and then because we had pyrex
pans, so she could see them when they were on the 7
stove, they were see through for someone in
a wheelchair so they could just see, they would jus t
explode on the hob in the middle of the night.
I would rush out to the kitchen to find out what ha d
happened and I would just walk straight through a l oad
of broken glass.
|
2,476 | 26 | QUESTION:
Nine and a half years after your Dad's death --
ANSWER:
Yes.
|
2,477 | 26 | QUESTION:
Would you like me to say what did happened to your
Mum? Nine and a half years after your Dad's death
your Mum succeeded in taking her own life.
ANSWER:
Yes.
|
2,478 | 26 | QUESTION:
Are you able to say what impact your Dad's infectio n,
death and what subsequently happened to your Mum ha s
had on your life?
ANSWER:
I was always slightly afraid of my Mum and not so
close to her because she could be very volatile and
abusive and she always had been as I was growing up ,
and my Dad was so sociable and friendly he almost u sed
to translate Mum's behaviour for me and I was
incredibly, incredibly close to my Dad.
I mean, I used to treat him when he had bleeds and
things and when I went to school and learned to swi m
and learned to horse ride and play tennis and
everything I then went and taught him all these thi ngs 8
because he was safe with because I could treat him if
he had a bleed.
We had other family. My Dad had an older brother
who had four children himself, I had four cousins, and
because of my Mum's behaviour they had never
particularly got on that well with us but after
a couple of attempts on each side, they cut us off
completely and both my Mum and I felt that it was
because of what had happened to my Dad, either that
they were afraid of the stigma or they just couldn' t
cope with the stress and the reality of the situati on.
My uncle had already lost a brother. My uncle was
about 15 years older than my dad and there had been
a middle brother called [redacted] who had died whe n
he was a child because it wasn't known that he was
a haemophiliac and he had a sudden and severe bleed
and died.
So I think that might be why they couldn't cope,
so once Dad died it was just me and my Mum on our o wn
and I promised Dad that I would look after her. So
every time she tried to hurt herself, even when her
behaviour was very volatile and violent, I was tryi ng
to look after her and keep your safe and I felt lik e
I failed because she killed herself, and when she
killed herself she'd actually gone to a holiday hom e
9
just outside [redacted] and I felt that I should ha ve
known and that I should have been able to stop her,
but at the same time I just wanted her pain to go a way
because she was always in so much pain.
I was also very close with my paternal grandmother
and after my Dad died she had a lot of guilt. I th ink
she'd always had a lot of guilt and hadn't really
spoken about it because she didn't know she was
carrier of haemophilia until her second son died, a nd
then she, first of all, had to deal with my Dad bei ng
a haemophiliac and, secondly, watching him get this
awful disease and die, and we used to spend a lot o f
time talking about what I would now describe as
survivor guilt but I didn't know what to call it at
the time, and I think the last time I spoke to my
uncle he phoned me up and asked me to stop speaking to
my granny because whatever I was saying was really
upsetting her, and it wasn't on.
|
2,479 | 26 | QUESTION:
You've put it in your statement in this way, that y our
Dad's in infection and death cast a long shadow ove r
your life. It impacted aversely on your ability to
form relationships with others. You said you were
scared of forming relationships and there was a hug e
part of your life that defined you which you couldn 't
tell anyone about, and you say you were a carer for0
the rest of your family until you were 30 and you h ad
no Dad, no finances, and later on no Mum to help.
ANSWER:
Yes, the rest of the family I was referring to th ere
was actually my Dad's Mum who I just mentioned, and
about a year and a half after my Dad died, my mater nal
grandmother died unexpectedly and part of the effec t
on my Mum of what had happened to my Dad was that s he
was -- I mean, everyone's scared of death. She was
absolutely petrified and she was so afraid of havin g
to run into people that she had known since childho od
and just try and explain why Dad wasn't there anymo re,
that I ended up having to get in the car with her a nd
she drove away at 3 o'clock in the morning from my
Granddad's house to avoid going to her own Mum's
funeral.
And my maternal grandfather was very, very
intellectual chap, a former headmaster, and he
outlived my Mum by about ten months . He never real ly,
luckily I guess, he had become quite senile at the
point where Mum was extremely volatile and he was
almost completely unaware by the point that she die d.
He'd always found her behaviour very difficult to
understand and he didn't understand what had happen ed
to my Dad at all.
|
2,480 | 26 | QUESTION:
Was your Dad, in that period of time between his be ing 1
informed of his diagnosis and his death, ever offer ed
any form of counselling or psychological support or
assistance?
ANSWER:
No.
|
2,481 | 26 | QUESTION:
What about your Mum?
ANSWER:
No. I believe it says in my statement that we we ren't
offered any counselling at all. I did remember
through a flashback a couple of weeks ago that we w ere
offered some counselling via the GP and I think the
reason I'd almost deliberately forgotten about it w as
that the councillors turned up at our house and the y
sat down on our sofa drinking our tea and asked us
what the problem was and when we told them they lef t.
And we didn't feel that we could really talk to
anybody very much after that.
|
2,482 | 26 | QUESTION:
In terms of financial assistance, you never receive d
anything from any of the trusts and schemes; is tha t
right?
ANSWER:
That's right.
|
2,483 | 26 | QUESTION:
Your parents were part of a group action and receiv ed
a payment as a result of that group action, but tha t's
all.
ANSWER:
Yes.
|
2,484 | 26 | QUESTION:
There's an observation in your witness statement,
Ms K, about something a consultant told your father at 2
an appointment. You've said this:
"When I was 8 I attended an appointment with my
father when the consultant told him to be grateful he
was still alive because if it wasn't for Factor VII I
he would have been dead 20 years earlier."
ANSWER:
Yes.
|
2,485 | 26 | QUESTION:
That was something that you feel strongly about tha t
attitude you've said in your statement.
ANSWER:
The attitude I think it's very hard to explain to
somebody who hasn't had a chronic illness or been
around someone with a chronic illness that requires
frequent and/or constant medical intervention.
We used to go to the hospital a lot. Dad on his
own and sometimes me with him and because we were
there so often, we felt that all the medical staff
were almost our friends. We used to socialise with
some of them, go out to dinner with particularly
a couple of the staff from St Thomas' and we truste d
them. They were our friends, and it seemed like
a very much more informal relationship than
doctor/patient.
So the implication and occasional statements that
we should be grateful that Dad had lived that long, we
should be grateful that he was alive and that he wo uld
have died much earlier without Factor VIII treatmen t,
3
all these things plus the statement that you just r ead
out for me, we just got used to hearing it and it w as
just like, well, you have something in the blood, y ou
get Hep B or whatever, it's just a small side effec t
of the treatment.
And I remember when the news about AIDS first hit,
when I first read about it, and I asked my Dad's
consultant if he could go back to splinting, which is
what he'd done before getting Factor VIII, and I wa s
told that once a patient had Factor VIII they could n't
go back to splinting and that splinting wasn't very
effective anyway.
It just seemed that -- everything I remember as
a child was that Factor VIII was this wonderful
treatment. It was this wonder treatment that meant
that people could lead "normal" lives and have
a longer life expectancy than anything that had com e
before and, therefore, anything that came with it w as
just something that you had to accept.
|
2,486 | 26 | QUESTION:
You've continued, even to the present day, to
experience a degree of stigma in consequence of wha t
your Dad went through. How has that affected you?
ANSWER:
I struggles on a few different sides. I think in
common with everyone else who's given evidence and
everyone who's affected and infected, it is medical4
treatments and medical staff who have caused the
problem and though I appreciate this may be acciden tal
on the individual's behalf, it's very difficult whe n
a large number of staff or it seems as though it's the
whole of the medical establishment has caused
a problem, and then when you want to get treatment you
have to go back to the medical establishment and yo u
have to trust doctors again.
I've had issues fairly recently with an operation
I was due to have last September in terms of a surg eon
telling me verbally on the phone that there was an
issue with safety to her team in operating on me,
which I didn't understand, and then being told
something different in writing.
I've had -- when it's come up in the past, in
fact, there's a letter from my legal team that arri ved
at my shared house one day last year and because it
had -- I can't remember if it had a legal team's na me
on it or whatever but my landlady opened it because
she was curious, and when she read that I was invol ved
in this inquiry, I came home and found that my
belongings were by the front door and the locks had
been changed.
There have been instances where I've trusted
people who I've had friendships or relationships wi th 5
and when I trust them enough to actually explain wh at
happened with my Dad, then they stop speaking to me .
I've had issues at work and -- sorry, I find this
difficult to talk about because --
|
2,487 | 26 | QUESTION:
You have answered the question very clearly and we
have your written statement as a matter of record.
Ms K, that's the end of the questions I wanted to
ask you. Is there something that you would like to
say or add?
ANSWER:
I would like to make four points, if that's okay. And
I'm just going to read from my notepad. The first
point is we need qualified psychologist support.
We've all been stigmatised, traumatise and had to b ury
things that have happened to us. Now we are relivi ng
these events through our own accounts and people's.
We are prime candidates for SPTSD and we need
specialised support.
At the same time we have amazing peer support
networks online and I think it may also be appropri ate
to train some people involved as peer counsellors.
These wonderful people are offering support anyway and
need training to support others and protect
themselves.
Secondly, in the 1980s AIDS and hep C were a gift
to those who wanted to further stigmatise and 6
marginalise the high risks groups such as gay men, sex
workers and IV drug users. This along with insurer s
and mortgage providers' policies at the time, refus ing
loans or cover to those who had even been tested dr ove
high risks groups underground. They were untested
victims of hate crimes, and many people in these
groups felt as though they were already damned so t hey
had nothing else to lose.
Stigma, legal and financial consequences prevented
people from being tested, further increasing the ri sk
to everyone in society, especially those receiving
blood products or whole blood. Haemophiliacs and
whole blood infection victims have been seen as
worthier than these groups. My dad didn't blame ga y
men, sex workers or IV drug users and neither do I.
It's not your fault.
Thirdly, many people also believe that infected
blood is an old issue and irrelevant. Without wish ing
to scare anyone, there is always a new blood-borne
virus. I'm tracking five at the moment.
Though a lot has changed in medical practice in
the last 30 years or so we need to ensure that high
risk groups infection testing and seeking treatment
are not stigmatised when the next infection is here .
Finally, a huge thank you to everyone who has
7
supported me and anyone else infected or affected, and
thank you to all participants who are probably all
better speakers than me and please remember those
still affected by poverty, trauma and stigma who fe el
unable to participate. We still respect and suppor t
you and we are here if you feel that you can join u s.
|
2,488 | 27 | QUESTION:
Dr Winter, I understand that you
don't always find it very easy to hear.
ANSWER:
I'm very deaf, if that's what you mean.
|
2,489 | 27 | QUESTION:
That's a better way of putting it.
I was being polite. We'll do what we can to help.
I'm raising it now so that everyone understands tha t
council will speak slowly, and that if you have any
difficulty in hearing, please indicate, and one way or
the other, we hope that you will hear everything. If
you don't, please let us know.
ANSWER:
I've managed through my hearing aids to get on to y our
loop-system, so you are very clear at the moment.
|
2,490 | 27 | QUESTION:
Dr Winter, I'm just going to ask you, first of all, to
give us an overview of your career. My understandi ng
is that you studied at medical school at Guy's
2Hospital between 1968 and 1973?
ANSWER:
Correct.
|
2,491 | 27 | QUESTION:
You then undertook, over the following three years,
various roles in general medicine?
ANSWER:
Yes.
|
2,492 | 27 | QUESTION:
Then between 1976 and 1979, you were a lecturer and
honorary senior registrar at the Middlesex Hospital .
ANSWER:
(Nodded)
|
2,493 | 27 | QUESTION:
Is that where you undertook your haematology traini ng?
ANSWER:
That's where I started, and then after four years,
I transferred sideways to a similar post at
Guy's Hospital where my training was completed in
1983.
|
2,494 | 27 | QUESTION:
Whilst you were at the Middlesex Hospital, I gather
that you were seconded for six months to the Edgwar e
Regional Blood Transfusion Centre?
ANSWER:
Yes. It was part of standard haematology training
that all trainees had to spend six months at
a regional blood transfusion centre to give them
experience of the way in which transfusion centres
work.
|
2,495 | 27 | QUESTION:
What were your duties, in outline, at the transfusi on
centre?
ANSWER:
Nothing of any great significance, to be honest. I t
was really observatory. I mean, you sat in. You w ent
3around the whole experience of one day, you went ou t
on the vans and helped blood to be collected. You
spent some time in the laboratory. You spent some
time seeing how the fractionation, such as it was,
happened before it went off to Elstree and, you kno w,
the day-to-day workings of a blood transfusion
service.
|
2,496 | 27 | QUESTION:
So you transferred, as you just referred, in 1979 t o
Guy's Hospital as lecturer and honorary senior
registrar?
ANSWER:
Yes.
|
2,497 | 27 | QUESTION:
That was in the Haematology Department at Guy's?
ANSWER:
It was.
|
2,498 | 27 | QUESTION:
Then you remained there until late 1983, and on
1 December, you took up a consultant post at Thanet
General Hospital in Margate?
ANSWER:
Yes. It was -- the post was -- the health authorit y
in those days was Canterbury and Thanet, and there was
a haemophilia centre there which, for historical
reasons, covered nearly all of the county of Kent a nd
was the sort of the biggest in the south-east outsi de
of London. So it was a curious arrangement because of
its geographical position.
|
2,499 | 27 | QUESTION:
Then that centre relocated to Canterbury in the
mid-1990s and became a comprehensive haemophilia ca re
4centre?
ANSWER:
Yes. For the -- really because the centre had grow n
so much and because the geographical access was so
poor and the facilities were not very good that the
service was put out to tender by the local health
authority and was eventually relocated into very go od
facilities on the Canterbury site. So that was a b ig
step forward. Then shortly after that, we managed to
get accreditation as a comprehensive care centre.
|
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