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1,600 | 16 | QUESTION:
He also wrote that he used to lock himself in the
toilets at the hospital when he was in pain because he
didn't want anyone to know. He wrote on the cover of
one book that he'd carry on writing in his book unt il
the pages ran out?
ANSWER:
Yes.
|
1,601 | 16 | QUESTION:
He wrote about a future event he was hoping to go to
in Planet Hollywood and his future ambitions and he
wrote down events such as your wedding anniversary?
ANSWER:
Yes.
|
1,602 | 16 | QUESTION:
We'll just have one more document, please, on scr een,
Paul. It is 2687003.
We can see S's meticulous handwriting, as you
describe it:
"My feelings and my life. This book is 7
basically all about me. Inside you'll see a lot of my
likes and dislikes, my wishes and dreams."
Also it says:
"How I feel on certain days and any worries
I had."
We see the date on which it is started,
8 February 1994, "finish when all the pages run out ."
ANSWER:
Yes.
|
1,603 | 16 | QUESTION:
He wasn't able to finish it.
ANSWER:
No, he wasn't.
|
1,604 | 16 | QUESTION:
Because he died very soon after that.
ANSWER:
Yes.
|
1,605 | 16 | QUESTION:
Thank you for sharing that with us.
ANSWER:
Thank you.
|
1,606 | 16 | QUESTION:
Can I just ask you a little bit about S the boy, the
things he loved?
ANSWER:
He was a very strong Liverpool supporter.
|
1,607 | 16 | QUESTION:
Yes.
ANSWER:
He loved playing on his games. He was a very cha tty
boy. He wasn't shy or anything like that. I think
him and his sister used to have arguments a bit but ,
other than that, no, he was beautiful.
Coming to the end before he died he started
getting quite angry, which I can understand. It wa s
mainly aimed at me. I was very confused about that . 8
His aunties used to go up and he was totally differ ent
but with me he got very angry but when I asked
Dr O'Doherty what was the matter, he said that's
probably when these things happen they tend to get
angry with the ones they loved the most, but he was
just lovely.
|
1,608 | 16 | QUESTION:
He loved Christmas you said?
ANSWER:
He loved Christmas. He loved Christmas and he lo ved
going on holidays.
|
1,609 | 16 | QUESTION:
And he loved school. He was a very hard worker a t
school you described.
ANSWER:
He loved school. We only found this out after he 'd
died. He was in hospital quite a lot in the last y ear
and he was due to do his exams and he was very keen on
doing his exams. I'm not just saying it because he
was my son but he was very bright. We found it har d
because we wanted to get some work to the hospital so
he could keep up because he was getting ready for h is
exams but the school wasn't sending them. In the e nd
the hospital had to intervene and they started send ing
him some stuff. But it was later, after he died, h e
used to keep all his papers, his Dad had given him
a Glenfiddich tin. It was like a tube and he used to
keep all his papers in there, but apparently -- S h ad
gone very small. He actually was quite tiny compar ed
9
to the other children of his age then and we found out
he was being bullied, that somebody used to meet hi m
at the gate and take his money off him and if he
had -- S had a certain pen, apparently a teacher ha d
told him it was really good to help with his
handwriting, so S had got this pen and the boy took it
away from him.
As he said, it wasn't just because it was a pen
but it was because the teacher had said to him it
would help him, he wanted it and he just used to wa nt
to -- he said he wouldn't even have minded if they
took him into a room and let him be on his own. He
just wanted to do his work. He used to set everyth ing
out, but this boy, obviously because S was smaller, he
took advantage of him and we heard -- what he said was
he just wanted to be left alone so he could do his
schoolwork but we didn't find any of this out becau se
he never told us. We didn't find this out until af ter
he'd died and we looked through his diary.
|
1,610 | 16 | QUESTION:
You discovered only years after S had died that h e'd
also been diagnosed with hepatitis C.
ANSWER:
I didn't find that out until 2009.
|
1,611 | 16 | QUESTION:
How did you find that out?
ANSWER:
We used to have the Macfarlane Trust but after S died,
all that, we didn't get any more correspondence fro m 0
them.
Then 2009 apparently The Skipton Trust had taken
over from the Macfarlane Trust at some point. They
just sent -- it was just a normal letter thing sayi ng
that the people that had got hepatitis C and the on es
that had died there was I think they called it
a something payment. So I contacted them and I sai d
that actually I wasn't aware that S had got hepatit is
C because I'd never been told that. So I had to ph one
up the hospital and the nurse said she was going to go
and try and find his records to have a look, and th en
when I phoned back the next day that is when she sa id
that he had had hepatitis C but then she said she
wasn't surprised because the two brothers they had the
same, but I hadn't -- previous to that I wasn't mad e
aware of that.
|
1,612 | 16 | QUESTION:
So you had never been told that he was being test ed
for hepatitis C?
ANSWER:
No.
|
1,613 | 16 | QUESTION:
Or given your consent to that?
ANSWER:
No.
|
1,614 | 16 | QUESTION:
And you had never been told the outcome of any te sts?
ANSWER:
No.
|
1,615 | 16 | QUESTION:
It was years after he died when you got this lett er
out of the blue from The Skipton Fund that you foun d 1
out?
ANSWER:
Yes.
|
1,616 | 16 | QUESTION:
You'd kept what had happened to S from anyone oth er
than the very close members of your family.
ANSWER:
I didn't even tell my younger children. When S d ied
I told them that he had a rare form of cancer becau se
that's what I was told his ulcers were. It wasn't
a cancer that we could get, once again it was just
something that somebody with HIV got, so that is wh at
I told my children. My older children were aware b ut
not my younger ones.
|
1,617 | 16 | QUESTION:
One of the reasons you'd not wanted to talk about it
more widely was because of the stigma associated wi th
HIV and AIDS and one of the phrases you have used i n
your witness statement is not wanting to feel like
a leper?
ANSWER:
That's right. When S -- when I first heard about S's
HIV, a few weeks later I was reading a paper and it
always sticks in my mind. There was a reporter for
the paper and what he said was everybody with HIV t hey
should be put on an island and left there, and
I remember sitting there thinking how can they say
something like that. My children have got HIV and
they're just little children. How can you say
something like that? So actually I didn't feel lik e 2
I wanted to tell my younger children that. I didn' t
want to put them through that.
|
1,618 | 16 | QUESTION:
In fact, subsequently, one of your other children was
told at St Thomas', by a doctor treating him that S
had had HIV and AIDS and had died as a result?
ANSWER:
Yes.
|
1,619 | 16 | QUESTION:
That was without your knowledge and consent?
ANSWER:
No, I didn't know until my son come home and he s aid
to me he didn't -- what was this about, he didn't
know.
|
1,620 | 16 | QUESTION:
And your daughter?
ANSWER:
My daughter was told first. She had gone for an
appointment to my GP and the GP had told her. So s he
come told and me the same thing up but until then t hey
didn't know.
|
1,621 | 16 | QUESTION:
Has anyone ever offered you or any of your family
members testing for HIV or HCV over the years? Did
they ever offer that?
ANSWER:
No.
|
1,622 | 16 | QUESTION:
Did they ever offer you any support or counsellin g?
ANSWER:
No.
|
1,623 | 16 | QUESTION:
You have mentioned the Macfarlane Trust?
ANSWER:
Yes.
|
1,624 | 16 | QUESTION:
You received some money from the Macfarlane Trust
while S was alive which you accepted in particular
3
because you wanted to take him on holiday?
ANSWER:
In the beginning, I think it must have been round
about 1988, we received a letter and it was, I thin k,
like a solicitor's letter and it was saying that th ey
were going to be given this money but we had to sig n
a form.
We were advised to sign it because they told us
we couldn't fight the Government; so it would be be st
just to take it, which we did. Then the
Macfarlane Trust was set up and they used to give
I think it was £230 a month for S and that went on
until S died. He died on 18 February in the early
hours of the morning and I got a letter, the last
letter I ever got from the Macfarlane Trust was on the
19th. They sent and they told me that they were so rry
to hear about S dying and they put in a cheque for
£1,000 to help with his funeral costs.
I did not actually get how they knew but then
when I said to Chris, she said that she has to info rm
them when this happens and that was the last time
I heard from them after that.
|
1,625 | 16 | QUESTION:
You've said in your statement how none of this ha s
ever gone away from your mind?
ANSWER:
No.
|
1,626 | 16 | QUESTION:
You tried to push it away. You have said the Inq uiry 4
has brought it back but you wanted to give your
statement and give your evidence for S.
ANSWER:
Yes. This is the first time I've ever been able to
say to somebody, it was like when S died everything
was -- it wasn't mentioned any more and it was like he
didn't exist in my head. He did exist. He had eve ry
right to be here now. That was taken away from him ,
but I've never been able to talk to anybody, and th en
when I found out, and that was just purely by
coincidence that I found out there was going to be an
inquiry, I got quite angry because I felt S should be
there as well and that's when I contacted the peopl e.
We even got S's picture put up, even though we were
late.
|
1,627 | 16 | QUESTION:
One of the things you've said in your statement i s
that, I think that's important to you, is that nobo dy
has ever said that they are sorry.
ANSWER:
No. Nobody's ever told me how this happened, why it
happened or just said to me we're sorry. I've neve r
heard nothing like that.
|
1,628 | 16 | QUESTION:
I haven't got any further questions for you but i s
there anything else you want to add?
ANSWER:
I just want now -- I just wanted to get S's story out
there because he did exist and actually I think peo ple
should know what happened to him because it shouldn 't 5
have.
|
1,629 | 16 | QUESTION:
Thank you.
ANSWER:
Thank you.
|
1,630 | 17 | QUESTION:
The particular concern that your friend had raise d
with you and that you had, I think, some general
knowledge about about American blood or you gained
knowledge was about the paid donation --
ANSWER:
Oh yes.
|
1,631 | 17 | QUESTION:
Blood being collected from prisoners and those on skid
row?
ANSWER:
Absolutely. I mean, over the years we spent in
America and our travels we absolutely knew. I mean ,
we knew people who, you know, when they were short of
money they'd go and donate blood and it was --
|
1,632 | 17 | QUESTION:
By which you meant you didn't want him to receive
anything derived from American blood?
ANSWER:
I did, we did, absolutely.
|
1,633 | 17 | QUESTION:
You've not kept copies of those articles but you
remember giving to the doctors over quite a prolong ed
period of time information and articles about this
issue?
ANSWER:
Yes, and as we'll talk about, it was later proved so.
|
1,634 | 17 | QUESTION:
In around 1980, what were you told about changes to
Nick's treatment from cryoprecipitate to something
else?
ANSWER:
Was it -- yes, okay, we arrived one day at the
hospital and they said Nick has to go on to this ne w
treatment and I said, "The one from America?" They
said "Yes" and I said, "No, absolutely not. He can not
have it and if you try and give it to him I'm going to
cause up", you know -- I went absolutely crazy. I had
a huge shouting match there and in the end they sai d,
"Okay, okay, we'll keep him on what he's on", so th at
was when he turned four, yes.
|
1,635 | 17 | QUESTION:
What you said in your statement, Della, is you ki cked
up bloody murder.
ANSWER:
I kicked up bloody murder.
|
1,636 | 17 | QUESTION:
You told the medics to keep Nick on cryoprecipita te,
was told there was not enough available. You were
told that there was some cryoprecipitate in Elstree
but the supply was not sufficient but you were give n
assurances that if Nick moved from cryoprecipitate to
factor products, they were safe and would come from UK
donors?
ANSWER:
Absolutely, absolutely, that was what I was told,
I was promised, yes, so that's what happened.
But very quickly after that they said that they
weren't going to have enough and we went to the Roy al
Free haemophilia department, which was more local t o
where we were living then, and they said if we
transferred Nick they did have enough of the UK.
|
1,637 | 17 | QUESTION:
If we just stick with 1980 for the moment Della?
ANSWER:
Okay, sorry.
|
1,638 | 17 | QUESTION:
No, no, don't worry at all. It's important, some of
the details in your statement, it's important that
they come out.
What you've said is eventually you had no
choice -- this is still at Great Ormond Street in
1980.
ANSWER:
Yes.
|
1,639 | 17 | QUESTION:
You had to agree to Nick receiving Factor VIII
products instead of cryoprecipitate but it would be
Elstree only?
ANSWER:
Elstree only.
|
1,640 | 17 | QUESTION:
Which you understood at the time to have no
involvement whatsoever with any kind of American
imports?
ANSWER:
That's right. Yes, sorry, yes.
|
1,641 | 17 | QUESTION:
If we just get up on screen, please, Paul, docume nt
282006.
It should come up on the screen in front of you,
Della. These are all documents you have exhibited to
your witness statement.
If you could highlight the next entry please,
3 November 1980, that whole passage.
We can see here 3 November 1980:
"Injured right knee."
There's a reference to slight swelling and then
a small bleed into and around the right knee joint.
Then there's a reference to Factor VIII being given ,
280 units, and you or Dan being shown how to give t his
for the first time. So that was the first time, as
far as you've been able to understand from the medi cal
records, that Nick was given Factor VIII products?
ANSWER:
Yes, from Elstree.
|
1,642 | 17 | QUESTION:
We can see the entry below that, 10 November 1980 ,
there's another reference to a small bleed and
swelling a week later and again a reference to
Factor VIII products being given.
In the period when Nick remained at Great Ormond
Street before you transferred his care to the Royal
Free, can you recall how often he'd be given factor
products? Was it a regular occurrence?
ANSWER:
It was, wasn't it? I mean, sometimes he'd go a w eek
without something, he'd have bumps but not a bleed.
|
1,643 | 17 | QUESTION:
So you wrote a letter to the Guardian. I think
because you didn't want to disclose details about 1
Nick, you wrote it in the name of your sister-in-la w
with her agreement and if we just have a look at th at,
Della.
Paul, it's 282012, please. If we could
highlight the top letter that's headed "Bad blood",
that's right.
So this is the letter that you wrote to the
Guardian and it was published in the Guardian setti ng
out your concerns in particular about the possibili ty
of Nick having to be switched to American Factor VI II.
What can you remember? What prompted your
concerns and your decision to write this letter?
ANSWER:
Well, the article prompted it. Everything that ha d
gone before prompted it. I was absolutely beside
myself, we were, and it happened that the letters
editor of the Guardian was friend of ours because t hey
don't normally let you publish letters not under yo ur
name and I talked to Patrick and he said it's okay and
I published it. So there's nothing in there, the
name, it's only what I said, but the person to whom it
was directed, who read it, understood perfectly wel l
it was me and --
|
1,644 | 17 | QUESTION:
What then happened? That letter was published on
23 January 1985 and then you got a phone call. Who
was that from?2
ANSWER:
Well, first of all, Professor Hardisty published his
own letter which I refuted and, yes, what happened was
that he rang us at our business which was not far f rom
Great Ormond Street.
Now, there's no way in hell he would have known
Julia Harrison. Dan's sister was a politician in
New York but no-one -- he knew when he saw that let ter
there was no-one in the Great Ormond Street
department, haemophilia department, who would have
known those things, who would have done those thing s.
So he just rang and he asked Dan and I to come and see
him up at Great Ormond Street haemophilia unit.
|
1,645 | 17 | QUESTION:
Can you recall anything about the conversation yo u had
with him?
ANSWER:
Oh, yes, I can recall everything. First of all, he
told Dan and I that all the children in the unit ha d
been tested for virus and Nick was the only one tha t
didn't have it.
|
1,646 | 17 | QUESTION:
So he told you that whilst Nick did not have the
3
virus, all the other boys on the unit had been test ed
and were all HIV positive?
ANSWER:
That's what he told us.
|
1,647 | 17 | QUESTION:
Can you recall anything else about the conversati on?
ANSWER:
I can recall a lot of things because it was -- I mean,
it was completely and utterly outrageous and by
then -- what year did you say that was?
|
1,648 | 17 | QUESTION:
1985.
ANSWER:
'85 and I had been talking about it since '78.
I mean, if they -- anyway, that's beside the point.
So he said there's going to be heat-treated
factor going to be available, I think it was in the
January or February. He said, "Do you want us to t ake
Nick into hospital and keep him sort of immobile un til
then and that seemed a ridiculous idea, meaning tha t
he shouldn't need any treatment, so -- especially i f
you knew Nick. I said to him, "We want to go away.
We want to think about this and we'll be in touch w ith
you tomorrow".
So I don't know about other people but for me if
there's something on my mind, quite often at night --
and I also said to Dan, "Do you think if I'd have
known anything about this we would have continued
using it", which was complete bullshit, honestly, a nd
so overnight I guess my mind was working and we wen t 4
back the next day and I said, "I've been thinking
about it. When they gave you the vials from Elstre e,
depending on the weight of the person taking it, it
changed the quantities maybe every six months. As
they got bigger they needed more". So I said to hi m
there was -- and you always had to return all the e nds
of bottles and things. So I said to him, "If they --
do they retain those ends of bottles?" He said,
"Yes". So I said, "Well, normally, you're not allo wed
to mix batches but since we know that Nick doesn't
have HIV, if you could put all those ends of bottle s
together that you say you retained where Nick did h ave
treatment from it, maybe there will be enough there to
see him through to heat treatment", and that's what
happened. We got them, all the ends, and that's wh at
Nick used and he never did get HIV.
At that point we didn't know anything about
hepatitis C. It wasn't even non-A non-B.
So -- okay, so Dan and I were extremely
dissatisfied by that time with what had gone on and
since the Royal Free was nearer to us, by then we'd
moved from Shepherd's Bush, we went to the Royal Fr ee
haemophilia department, we had a discussion there.
I think Dr Kernoff, wonderful doctor, unfortunately
not alive anymore, and he said they would have enou gh 5
of the same thing that Nick had had -- I can't
remember all the details -- for Nick to go on to it .
We let Hardisty know and said we were taking
Nick away. They refused to give us Nick's medical
file. The Royal Free said, "Don't worry". Maybe t wo
weeks later -- I can't remember two or three weeks
later, we got a phone call. It was someone, a nurs e
from Great Ormond Street saying, "Mr and Mrs Hirsch ,
if you'd like to meet me in the street, I've taken
Nicholas' file and I would like to give it to you".
We went, "Okay". Our business was near to Great
Ormond Street. It was just off Tottenham Court Roa d.
So we went over, we met the person, I don't remembe r
her name, I don't remember what she looked like -- too
long ago now even for me or my failing memory -- an d
we took it straight to the Royal Free.
Now, my recall of this is that we took it in and
the head nurse at the time, Chris Harrington, and
I looked through it quickly.
|
1,649 | 17 | QUESTION:
There was a particular note that leapt out at you .
ANSWER:
There was.
|
1,650 | 17 | QUESTION:
What was that?
ANSWER:
On the day when I had kicked up such a fuss at Gr eat
Ormond Street about them -- not allowing them to gi ve
him American treatment, right across that note in t ram 6
lines was written "neurotic mother", and that about
summed up the way we were considered by the medical
profession -- ugh.
|
1,651 | 17 | QUESTION:
You subsequently many years later obtained such
records as you can --
ANSWER:
Yes.
|
1,652 | 17 | QUESTION:
-- but you haven't been able to find a copy of th at
record?
ANSWER:
No, and Chris Harrington says she has no recall o f it.
|
1,653 | 17 | QUESTION:
Just before the transfer to Great Ormond Street - -
from Great Ormond Street to the Royal Free, you
referred to Professor Hardisty having sent his own
letter to the Guardian and then you wrote a respons e
to him.
ANSWER:
Well, all the letters there. I remember it, late r on
when all the inquiry started, I went to the Guardia n
archives, which were in the East End and, together
with someone there was helping me, looked on
microfiche and I found my letter and I found Hardis ty.
The way I remember it is that article was
published. Hardisty sent a letter saying, "No, not
so. We did not know". I sent a letter under Julia 's
name and then he responded again but the dates don' t
quite correlate. I'm not quite sure which way roun d
it was.
7
|
1,654 | 17 | QUESTION:
Don't worry. I am just going to ask you just to look
at one passage from Professor Hardisty's letter and
then your response to Professor Hardisty, just beca use
it helps illustrate some of the points you are maki ng.
282013, please. It is:
"Over-heated about blood."
So this we can see at the very bottom is
a letter from Professor Hardisty, the director of t he
Haemophilia Centre, Hospitals for Sick Children and
the first paragraph of the letter expresses sympath y
with Mrs Harrison, that being the pseudonym you had
used, and then sets out he must correct some
misstatements in the letter to allay possible distr ess
which the letter may have caused, and then the fact s
set out in the second paragraph are as follows:
"AIDS was first described early in 1981. The
first case in a haemophiliac was reported to the
Centre for Disease Control in the United States lat er
that year. Medical intelligence travels fast and
these facts were well known to this, as to all Brit ish
haemophilia centres at that time."
Then it goes on to talk about not until 1984
that the precise causative virus had been identifie d
and heat treatment.
You responded directly to Professor Hardisty,8
didn't you?
ANSWER:
No, I responded in the Guardian to it.
|
1,655 | 17 | QUESTION:
You certainly wrote a letter to Professor Hardist y
because you have given us a copy of that.
ANSWER:
Right.
|
1,656 | 17 | QUESTION:
Until you had that meeting with him after the fir st
letter?
ANSWER:
Yeah, we dealt with Colin Sieff almost exclusivel y.
|
1,657 | 17 | QUESTION:
Again, just before we move on to Nick's care at t he
Royal Free you have explained in your statement tha t
after this exchange of correspondence, after the
meeting with Professor Hardisty, there was a regula r
appointment that Nick had on 9 July 1985 at Great
Ormond Street and you were told at that appointment
that Nick was going to be switched to American 0
Factor VIII because haemophilia centres were runnin g
out and you describe yourself as being livid and
that's the point at which the decision was finally
made that you would move to the Royal Free?
ANSWER:
Mmm. God.
|
1,658 | 17 | QUESTION:
Nick's regular routine haemophilia care transferr ed to
the Royal Free in 1985, 10 July, and he came under the
care of Dr Goldman, who you liked?
ANSWER:
We did.
|
1,659 | 17 | QUESTION:
And Professor Lee with whom you have said in your
statement your relationship over the years
deteriorated?
ANSWER:
Yes. She wasn't there at the beginning, Kernoff was
there.
|
1,660 | 17 | QUESTION:
After Nick had been at the Royal Free for about f ive
years, you and Dan and Nick attended a review with
Dr Goldman on 5 June 1990.
I'm going to ask for that document to be put up
on screen or such notes as there are of it. It is
282016. We can see the date there, 5 June 1990,
review, and if you could just scroll down a bit,
please, Paul, towards the bottom of the entry for t hat
date.
ANSWER:
I can't read that.
|
1,661 | 17 | QUESTION:
Thanks. So two lines up from the next entry ther e's
1
a reference to "discussed anti-HCV with" --
ANSWER:
That's hep C.
|
1,662 | 17 | QUESTION:
Yes, "with Mr and Mrs Hirsch and Nicholas" and th en
"review in six months' time".
It subsequently became apparent to you, and we
will look at the later documents over the following
weeks, that blood samples were taken and Nick was
tested for hepatitis C.
What, if anything, can you recall about that
review?
ANSWER:
I don't recall much. We knew that there was what they
call non-A non-B hepatitis virus potentially, possi bly
in the blood. The thing was that [redacted] * whose
flat in San Francisco we had gone out originally to
take while he went to India, he'd had hep c and I h ad
sort of nursed him through it.
|
1,663 | 17 | QUESTION:
Was it hep c he had had or hep A?
ANSWER:
No, no, sorry, he had had hep A and that's curabl e.
So when I think Christine Lee talked about hep c
possibilities or Dr Goldman, whoever it was,
I actually didn't take it very seriously. I though t,
well, if that's the worst he gets, that's dealable
with. But they called it non-A non-B. I didn't
really go into it. It was all already had been so
traumatic the whole thing and the fights and the 2
difficulties and we didn't have that fight at the F ree
but we had other things there.
|
1,664 | 17 | QUESTION:
So what you've said in your statement about this
review on 5 June 1990 is you have very little memor y
of the actual visit, you've seen the notes referred to
a discussion about HCV, hepatitis C, you have said
that you had no knowledge what that was at the time
and it wasn't explained to you, blood examples were
taken but that was the routine and you don't believ e
that you were informed specifically that there was
going to be a test of the blood for hepatitis C.
ANSWER:
No, we weren't. Well, I'm sure you'll bring it u p.
|
1,665 | 17 | QUESTION:
Then on 9 July you received a letter from the Roy al
Free and we're going to have that up on screen,
please.
It is 282017, Paul.
So this is the letter sent to you from Dr Lee:
"I'm writing to tell you about the new anti-HCV
test. Many haemophiliacs who have been treated in the
past with unheated clotting factor concentrates or
other blood products have been exposed to the non-A
non-B hepatitis virus, so-called because it is
unrelated to hepatitis A and unrelated to hepatitis
B."
It goes on to explain that an agent responsible 3
for the virus has now been identified and there's
a new test available. Then it says this:
"Nicholas' anti-HCV was positive on
5 June 1990."
And then the letter continued by telling you
that some people who have been exposed to non-A non -B
HCV in the past may after many years go on to devel op
chronic hepatitis but we cannot determine who will
progress in this way."
You were told that although there were some
trials of treatment for such liver disease no-one w as
using treatment on a regular basis in haemophiliacs at
the present time, and then there was a reference to
the limited information about sexual transmission o f
HCV and then it says:
"We can discuss this with you at your next
review or sooner if you would like."
What, if anything, can you recall about
receiving that letter or the impact on you?
ANSWER:
Well, I mean, it was very distressing but again a t
that time I did not know that hepatitis C was such
a serious disease. The only, as I said, experience
I had was with hepatitis A and they'd got better.
I did not -- I didn't take it to be really
serious in that way and, if I recall, Christine Lee4
didn't -- I mean, it didn't seem particularly serio us.
It was as the years went on that everybody's attitu de
changed and maybe at that time they didn't know; so in
that case I wouldn't say anybody was to blame but a ll
I know is that after that I think it was six months
before they saw Nick again.
|
1,666 | 17 | QUESTION:
If we take it in stages, Della.
ANSWER:
Okay.
|
1,667 | 17 | QUESTION:
You subsequently on looking at Nick's records fou nd
out that between 5 June 1990 when the blood was tak en
for testing and 9 July when the letter was written to
you as Nick's parents telling you the result, a let ter
had been sent by the Royal Free to your GP on 22 Ju ne.
That's 282022, please, Paul.
So we can see the date at the top of the page
and although the text isn't very clear -- we only n eed
the last paragraph of this page, Paul, which is
clear -- so your GP was being told on 22 June this:
"We discussed the tests for antibody to
hepatitis C. Mr and Mrs Hirsch and Nicholas are aw are
that the anti-HCV test has been performed."
Just pausing there, you don't recall any such
discussions having taken place, do you?
ANSWER:
No, but that I wouldn't, you know -- I don't reca ll
it.
5
|
1,668 | 17 | QUESTION:
Then it says this:
"The result was positive but they have not yet
been told the result. Since this is the virus thou ght
to cause non-A non-B hepatitis and since most
haemophiliacs treated with Factor VIII concentrate
before screening and heat treatment have been infec ted
with non-A non-B hepatitis, the result was not
unexpected."
ANSWER:
Right. So in terms of this, I didn't recall it b ut
when Mike and Sarah were going through all the pape rs
and they came up with this, I took it to -- we're
still with the same centre, health, GP unit, but th e
doctor who I had at the time who retired recently w ho
knew everything about everything all the way throug h,
when he retired he asked me to come and see him and he
said -- I don't think I said this, "If there is
anything I can ever do to confirm all we've discuss ed,
you only have to call on me".
The thing is that I took it to the doctor we see
now in the practice and she was horrified because i t's
illegal to basically indicate we haven't told the
parents, you shouldn't either, which is what it's
basically saying and she said she was going to give
the letter to the practice lawyer. I've not heard
more about it but it was shocking.6
|
1,669 | 17 | QUESTION:
You've explained in your statement you cannot
understand why the first people who were informed w ere
not you as Nick's parents and instead that letter
comes some weeks later from Dr Lee. This letter go es
to your GP without your knowledge.
ANSWER:
Quite.
|
1,670 | 17 | QUESTION:
The passage that we read concludes with saying:
"Since most haemophiliacs have been infected
with non-A non-B hepatitis, the result was not
unexpected."
Was that ever explained to you, that this, in
fact, was something that the medical profession
expected by this time to find out?
ANSWER:
I can't say -- what I know is that Dan and I, and
particularly me, I never left anything to chance.
I never stopped asking questions, but in this case
I had no idea from what I remember that it was
a serious thing. I thought -- I didn't think that it
was -- it was certainly not explained that it was
serious at all.
|
1,671 | 17 | QUESTION:
You've drawn attention in your statement and in t he
documents you've produced to some subsequent notes.
If we could have up on screen please, Paul,
282018 and it's the first entry, please.
The details of the review we can leave aside but 7
this contains the sentence:
"I note he has chronic hepatitis C genotype 1
and he was probably infected in 1980 with first
clotting factor concentrates."
So that's the information you've subsequently
been given, that Nick's infection probably derived
from the first factor concentrates given in late 19 80?
ANSWER:
Yes.
|
1,672 | 17 | QUESTION:
Thanks, Paul. You can take that down.
Now, through the 1990s, you observed that Nick
was getting increasingly unwell, always tired, didn 't
look well I think is how you've described it in you r
statement, and there was a suggestion at one point by
your GP I think of glandular fever.
You saw Dr Goldman in November 1990 and a query
was raised whether it could be attributed to
depression and the question you've raised in your
statement is the obvious cause must be the
hepatitis C?
ANSWER:
(The witness nodded)
|
1,673 | 17 | QUESTION:
In 1992, Nick embarked upon his first course of
treatment for the HCV, a course of interferon. Was
that as part of a trial? What can you recall about
that process of treatment and Nick's response to it ?
ANSWER:
It was absolutely ghastly, terrible. 8
Was that when he was doing his GCSEs? I can't
remember.
|
1,674 | 17 | QUESTION:
1992, Della. He would have been about 16?
ANSWER:
I think he was doing his O levels then, sort of, and
oh it was just terrible. It was ... it made him il l
in every way that he wasn't ill already. It made h im
sick -- ugh. It was ghastly. I don't want to talk
about it. It was --
|
1,675 | 17 | QUESTION:
If we just stick with 1992, Della, and I can take it
from your statement so you don't need to talk about it
through the detail. You described it as being
extremely toxic and unpleasant for him, a difficult
year for him, debilitating as if he had the flu for
12 months, and it didn't clear the virus and his vi ew
was he didn't want to go through anything like that
again.
ANSWER:
That's right.
|
1,676 | 17 | QUESTION:
A few years later, 1996-1997, he was offered a se cond
course of treatment, combination therapy, of
interferon alfa and ribavirin but he didn't want to go
9
through it at that stage?
ANSWER:
I can't remember. I mean --
|
1,677 | 17 | QUESTION:
That's what you put in your statement.
ANSWER:
I probably had documents in front of me that said
that, yes.
|
1,678 | 17 | QUESTION:
It was around this time you've described in your
statement that you were becoming increasingly
concerned about what you described as the purity of
the treatment and whether there might be other
infections or other viruses to which Nick and indee d
others might be being exposed and you repeatedly
requested for him to be switched from the factor
product he was using to recombinant factor because you
thought that was much safer.
Now we will go into the detail of some of the
documents in a few minutes, but what was the genera l
concern that you had at that time about the way in
which recombinant was or wasn't being made availabl e?
ANSWER:
You'll have to remind me. I'm just finding this too
much.
|
1,679 | 17 | QUESTION:
Don't worry, Della, I can imagine and if I you wa nt
a break at any time ...
ANSWER:
No, no, just ...
|
1,680 | 17 | QUESTION:
What you have said in your statement is:
"It became obvious that there were two different 0
classes of haemophiliacs developing, those who were
already infected with HCV who were kept on their
existing treatment and newly diagnosed who might be
given recombinant."
ANSWER:
Yes, that was true, that was true, and I remember
getting sort of phone calls and emails from people
saying do you want -- how old was Nick then?
|
1,681 | 17 | QUESTION:
So we're talking I think about 1996?
ANSWER:
18. Yes, that was then that I got messages sayin g
from people who were on the -- saying they could sp are
an injection. I mean, they were trying to help, th ey
were trying to share safe treatment in the UK, in
a civilised country, they were offering us -- ugh,
yeah.
|
1,682 | 17 | QUESTION:
Amongst other things you wrote to the Secretary o f
State for Health?
ANSWER:
Alan Milburn, yeah, I certainly did.
|
1,683 | 17 | QUESTION:
And as you described you were contacted by
haemophiliacs who were receiving recombinant and
offering to share it.
Then a particular --
ANSWER:
Can I stop you because I want to say specifically ,
Alan Milburn, when the safe treatment was introduce d,
said it had to be -- you had to be 18 -- under 18 a nd
Nick was about two months past his 18th birthday an d 1
I begged him in this letter to let him have it.
I mean, he was so frightened of giving himself an
injection and he refused, and in those few months h e
got exposed to --
|
1,684 | 17 | QUESTION:
VCJD?
ANSWER:
Yes, CJD.
|
1,685 | 17 | QUESTION:
Della, I am going to come on and ask you now abou t the
issues relating to the risk of exposure from vCJD.
I can take it reasonably quickly, if that would hel p.
ANSWER:
No, no, it's all right. I just feel so passionat ely,
not only because it was my son. There were tonnes of
people that this was happening to, so there were
families all over who were suffering like we were a nd
like Nick was.
|
1,686 | 17 | QUESTION:
So you had some discussions with the Royal Free
because they were going to be sending out a letter.
You'd read in the news coverage about the risks of
vCJD and you were worried about the impact upon Nic k
of receiving a letter telling him about it. But
you've recalled in your statement that in early
December 1997 Nick went to his usual clinic
appointment, was called into an interview room and
told the news very bluntly by one of the doctors.
ANSWER:
Can I say more on this?
|
1,687 | 17 | QUESTION:
Of course you can, yes. 2
ANSWER:
Nicholas, as you will hear later, was a musician and
he often went on tour. He was so frightened of goi ng
to the Royal Free, they pulled him out sometimes he 'd
be going off and he'd go in for treatment, at that
time it wasn't home delivered. They'd pull him int o
a side office and some totally disinterested doctor
would say, "Oh, by the way, you've been exposed to
this", or, "Oh, by the way, that batch you had ..." He
was frightened to go there anymore, and every time --
being us, I wrote to them, I complained and then Da n
and I would find ourselves sitting in a room with s ome
doctor going, "I'm so sorry that I distressed
Nicholas". It was so terrible what they did, so
terrible, particularly to the young ones and the
teenagers, well, to everyone. It was so without ca re
and thought that these were real human beings with
lives and feelings. It was disgusting and I mean I 'm
not just saying it here, I expressed it forcefully in
letter and in person many times.
|
1,688 | 17 | QUESTION:
There was a particular letter that Nick did recei ve
and we're going to put it up on screen, Della, if
that's all right. It's exhibited to your statement .
It's 282027. This is a letter, 2 December 1997, fr om
Professor Lee to Nick and it says this:
"It's our practice to keep you informed of
3
issues that relate to haemophilia care. You may ha ve
heard or read about CJD and the concerns that the
agent causing this may be transmitted by blood
transfusion and blood products. At the present tim e
there is no evidence for this. The basis for
scientific speculation is that the new form of CJD
infects the lymphocytes, a type of white cells foun d
in the blood. Blood products used for the treatmen t
of inherited bleeding disorders do not contain whit e
cells."
But then reference is made to:
"As a precautionary measure, there have been two
recent recalls of BPL Factor VIII batches because i t
was found a donor had not met the current health
requirements for CJD", and then Nick was informed:
"According to our records you received some of
the 8Y batch in 1995."
I don't think I need to take you to it but we've
got -- in fact, I will ask you to look at one
document, Della. It is 282028.
ANSWER:
Is that what -- oh.
|
1,689 | 17 | QUESTION:
You will see that's 31 October 1997, probably,
confirming that Nick had received that particular
batch.
The next page please of that, Paul.4
We'll see here there's a fax from BPL,
30 November 1997, to the Royal Free and if we just
look at the first paragraph please, last sentence,
having explained the recall, it says this:
"The advice from the Ethical Committee is that
the recipients/patients should not be informed that
product that they have received has been recalled f or
this reason."
ANSWER:
Yeah, right.
|
1,690 | 17 | QUESTION:
Professor Lee did, in fact, inform Nick. We have seen
the letter.
What can you recall about Nick's response or his
reaction?
ANSWER:
What year was that?
|
1,691 | 17 | QUESTION:
So it's 1997. I think that's right. You have
described it in your statement, Della?
ANSWER:
Yes, I mean.
|
1,692 | 17 | QUESTION:
He was devastated you said.
ANSWER:
I mean he was devastated. What else could they d o?
|
1,693 | 17 | QUESTION:
What you have said in your statement Della is:
"He phoned Dan and I at work and I remember him
saying, 'You will never believe what they have give n
me now'", and you went home and when he turned up h e
was very angry and kicking furniture around the hou se.
ANSWER:
Yes, this is true. 5
|
1,694 | 17 | QUESTION:
Now, you renewed your efforts both on behalf of N ick
and more generally to lobby for recombinant to be m ade
available more widely?
ANSWER:
I did.
|
1,695 | 17 | QUESTION:
I don't propose to take you through all the docum ents
because you describe them in detail in your stateme nt
and provided them to the Inquiry and they will be
publicly available, but you and your MP (who was yo ur
sister who was MP by that time) and others were
lobbying for recombinant to be made available more
generally to haemophiliacs who had been infected wi th
HCV or HIV; is that right?
ANSWER:
I think -- yes, I'm sure I did.
|
1,696 | 17 | QUESTION:
You wrote to Dr Ludlam at one point in his capaci ty as
chair of the UKHCDO about it?
ANSWER:
I wrote to everybody.
|
1,697 | 17 | QUESTION:
You wrote to the Government, you wrote to your lo cal
health authorities?
ANSWER:
Oh.
|
1,698 | 17 | QUESTION:
You investigated the possibility of legal action,
judicial review --
ANSWER:
I did.
|
1,699 | 17 | QUESTION:
-- to try and get Nick given with recombinant on an
individual patient basis if you couldn't change the
national policy but, in fact, it was not until 6
August 2003 that Nick moved on to recombinant.
ANSWER:
Yes.
|
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