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|---|---|---|
1,100 | 11 | QUESTION:
Just to pick that up, it's a little bit
more than that, though, that you have had, isn't it ?
In 2010 you had a possible transient ischaemic atta ck,
mini-stroke.
ANSWER:
Yes.
|
1,101 | 11 | QUESTION:
2013, you had a kidney infection requiring three
courses of antibiotics. That's when you had the ve ry
high white cell count and abnormal bone marrow biop sy?
ANSWER:
Yes.
|
1,102 | 11 | QUESTION:
And the doctors thought you may have some form of
leukaemia?
ANSWER:
Yes.
|
1,103 | 11 | QUESTION:
And December 2017 you had what seemed to be like flu
but you were then left with very severe fatigue
thereafter.
ANSWER:
Yes.
|
1,104 | 11 | QUESTION:
Since then you've been unable to work --
ANSWER:
Yes.
|
1,105 | 11 | QUESTION:
-- because it's been so severe.2
ANSWER:
Yes.
|
1,106 | 11 | QUESTION:
You don't know whether they are related to hepati tis C
but you wonder, as you said, whether there is a lin k
either with the hepatitis C or with the treatment
you've received.
ANSWER:
Yes. Sorry to interrupt the flow.
|
1,107 | 11 | QUESTION:
Not at all. It's such an important piece, Joan,
I want to just read part of your statement and ask you
to confirm it or comment further on it. You've sai d:
"Whether these symptoms and others were as
a result of the interferon or the hepatitis C I do not
know. I just know that I have not been well si... |
1,108 | 11 | QUESTION:
Before you got on the trial you say:
"I began to get angry with the mindset that it
was somehow okay to get hepatitis C because it woul d
not kill you. That was coming from people who didn 't
have hepatitis C."
ANSWER:
Yes. I really think -- at one point I do remembe r
meeting this particular brick w... |
1,109 | 11 | QUESTION:
You got on to that trial and it was 52 weeks of
interferon and Ribavirin that you underwent.
How did you feel physically during that
treatment?
ANSWER:
In a way coming here this week and listening and it is
also something that's part of this whole fabulous
process is the validation. It was tough. I ... |
1,110 | 11 | QUESTION:
They were out of the house?
ANSWER:
Exactly.
|
1,111 | 11 | QUESTION:
You would fill in fridge with soup and bread?
ANSWER:
Yes, yes, totally doable I felt.
|
1,112 | 11 | QUESTION:
At what time would you give yourself the injectio n,
Joan?
ANSWER:
One of the elements of all of this that caused me
distress was the lack of control. So I played a bi t
of a game where I could go right up to midnight bef ore
I injected myself. That was my choice. I had the
choice when on that day I w... |
1,113 | 11 | QUESTION:
Your statement says:
"I used to wait until one minute before midnight
to inject myself." 7
ANSWER:
Yes, yes, and then you go to bed and that's also a way
or short circuiting the not feeling so well because
hopefully you're asleep.
|
1,114 | 11 | QUESTION:
You love to read, don't you --
ANSWER:
Yes.
|
1,115 | 11 | QUESTION:
-- Joan, but during the treatment there were time s
when you couldn't even do that.
ANSWER:
I started this trial with a group of people, some of
whom just had to do the six months and I do remembe r
getting to six months and realising I had a whole
other six months to go and that was bleak. By then m... |
1,116 | 11 | QUESTION:
So you've described setting up a chair in front o f the
window where you could simply sit and look out at
nature. 8
ANSWER:
Yeah, and that was another thing. Part of the
contraindications is you've got to be very careful
about sunlight and I keep myself sane by walking an d
being out in nature. So i... |
1,117 | 11 | QUESTION:
You also had substantial hair loss and numb toes and
fingers and you still have some residual partial
numbness?
ANSWER:
Yes, and the hair hasn't grown back on the nape o f my
neck. It's a minor thing but when people then say
there's no evidence of permanent damage, actually
there is. Perhaps we're ju... |
1,118 | 11 | QUESTION:
Emotionally, it's been very difficult as well and more
recently you were seen by your GP and a counsellor and
they diagnosed you with PTSD. Do you feel able to say
any more about that?
ANSWER:
I do and this is what I mean about life -- things
don't happen in isolation, do they? Goodness knows
how this... |
1,119 | 11 | QUESTION:
You have had some counselling. You've had three
blocks of counselling over the years but, on each
occasion, there's been a very long wait between the
referral and actually getting to see the counsellor .
ANSWER:
Yes, yes.
|
1,120 | 11 | QUESTION:
I just want to go back to when you were undergoin g the
treatment. You claimed Incapacity Benefit while yo u
were undergoing the treatment and, for the year aft er,
when you were recovering and you were required to g o
for a medical assessment during that time.
Can you tell us what happened during that ... |
1,121 | 11 | QUESTION:
What did he advise you do?
ANSWER:
He advised that I talk to whoever was in charge o f my
treatment and get them to write a letter.
|
1,122 | 11 | QUESTION:
Which they did?
ANSWER:
They did.
|
1,123 | 11 | QUESTION:
But you were still called for a second assessment ?
ANSWER:
Yes.
|
1,124 | 11 | QUESTION:
The DWP insisted on assessing you during the year you
were supposed to be recovering and you found the wh ole
benefits system horrendous?
ANSWER:
Yes. I ... I have professionally supported peopl e
claiming benefits and been their supportive other a nd
seem them struggle. I'd never expected to be in ... |
1,125 | 11 | QUESTION:
You've said:
"I hadn't perceived myself as having a lot of
pride but the one thing I did pride myself on was
being resilient and I found the whole process of 2
applying for benefits and attending the assessments
really demeaning."
ANSWER:
Yes.
|
1,126 | 11 | QUESTION:
A year after you had finished treatment, you coul dn't
face another assessment and so you decided to find
some part-time work. You went to your GP to ask wh en
you'd receive confirmation of having cleared the vi rus
because you had cleared the virus --
ANSWER:
Yes.
|
1,127 | 11 | QUESTION:
-- and whether you had to tell employers about it .
What else did you say to the GP at that point?
ANSWER:
Do you know, I've got sidetracked by some memorie s so
I'm not quite sure what we're referring to there.
|
1,128 | 11 | QUESTION:
That's okay, don't worry. You've said in your
statement you also asked "Who's going to employ me
now?"
ANSWER:
Oh, yes, bless him. If I put that all into conte xt,
I had -- having had to give up the youth work post and
whilst I was waiting for treatment, I'd cobbled
together various jobs and I had fo... |
1,129 | 11 | QUESTION:
But you went to your GP to ask that question?
ANSWER:
I did.
|
1,130 | 11 | QUESTION:
And said, "Who's going to employ me now."
ANSWER:
And he said he would.
|
1,131 | 11 | QUESTION:
So you went to work for the GP as a receptionist in
the surgery?
ANSWER:
(The witness nodded) 4
|
1,132 | 11 | QUESTION:
You've since had to give that up because the fati gue
is simply too much?
ANSWER:
Yes. This is now a different surgery and I've mo ved
and things have happened but because of that kind m an,
I had another career in which I was accepted. I've
only ever been able to work part-time but I have
worked throu... |
1,133 | 11 | QUESTION:
As you spoke a moment ago, you alluded to having tried
to apply for work involving young people in the 199 0s
in that hiatus between having been diagnosed and
having your treatment and not getting those jobs.
Can you tell us a little bit more about what
happened then.
ANSWER:
I found myself in the pos... |
1,134 | 11 | QUESTION:
But off the record you were told that you'd not g ot
the job because of your hepatitis C?
ANSWER:
(The witness nodded)
|
1,135 | 11 | QUESTION:
As you say, you went to work for your own GP afte r
treatment?
ANSWER:
Yes.
|
1,136 | 11 | QUESTION:
For your own GP as a receptionist, then on to oth er
similar types of part-time role?
ANSWER:
Yes.
|
1,137 | 11 | QUESTION:
You have obviously never returned to the Outward Bound
youth work -- 6
ANSWER:
No.
|
1,138 | 11 | QUESTION:
-- because of your ill health and you have said i n
your statement:
"It took me a long time to let go of the hopes
and dreams that I shared with my peer group. You p lay
the cards you've been dealt and make the best of
everything, but it's hard not to grieve about what
could have been."
ANSWER:
Yes. ... |
1,139 | 11 | QUESTION:
That impact -- that hasn't just impacted you. It 's
impacted your daughters as well. You have said in
your statement that your eldest daughter thought sh e
had taken it all in her stride but she had left hom e
by then.
ANSWER:
Yes and I need to say now I can't answer for them and
I would encourage t... |
1,140 | 11 | QUESTION:
But from your perspective you have watched them h ave
a mum who's not been well?
ANSWER:
I tried really, really hard to save them most of the
story. It's hard enough for no reason of your own to
be deflected from a career where you really felt yo u
were making a difference. I put makeup on. I can' t ... |
1,141 | 11 | QUESTION:
I want to go back to somewhere that we were talki ng
about a little while ago and pick up something you
said before. Earlier when you were talking to us, you
said that you wished that somebody had looked more
broadly at the long-term permanent impact of the
hepatitis C?
ANSWER:
Yes.
|
1,142 | 11 | QUESTION:
You have since more recently had copies of your
medical records and in those records there was
a document we can have up, 0065009. It's dated
3 July 1998 and can we highlight the first paragrap h
to begin with. 9
This is a letter from a doctor to your -- sorry,
let me double-check before I say somethi... |
1,143 | 11 | QUESTION:
That's exactly, it's to your consultant -- apolog ies.
It's to your consultant and it says at the top:
"As relatively little is known about HCV
infection, transmission or the clinical course of t he
resultant disease, a national register of HCV
infections is being created ... funded by the
Department o... |
1,144 | 11 | QUESTION:
Or even as to the existence of the register?
ANSWER:
No.
|
1,145 | 11 | QUESTION:
If we go over to the third page, third paragraph, it
says:
"The National Register will gather information.
When The Public Health Laboratory Network identifie s
a patient who could be included in the register, th ey
will contact the doctor who cares for that patient and
invite them to include their pa... |
1,146 | 11 | QUESTION:
Your belief is that the lawyers found your name
through the HCV register?
ANSWER:
As far as I know, that's the only register I'm on . So
I would assume that is the link.
|
1,147 | 11 | QUESTION:
But you've never been told that you were on the
register?
ANSWER:
No.
|
1,148 | 11 | QUESTION:
And you have never been told that your medical
information is being provided to anyone else?
ANSWER:
No, I'd not seen that paperwork before I saw my n otes.
|
1,149 | 11 | QUESTION:
At the very least in your own mind
there are questions about how your name came to fin d
its way to somebody else in the litigation field.
ANSWER:
Yes.
|
1,150 | 11 | QUESTION:
Financially things have been difficult for you an d
particularly in relation to having to claim benefit s
and not being able to work to the extent you would
have liked.
Have you ever applied for insurance?
ANSWER:
No, is the short answer.
|
1,151 | 11 | QUESTION:
Why not?
ANSWER:
Part of the reasoning that I even joined the orig inal
litigation was that I became aware how little I kne w.
One of the useful bits of information -- and
I do mean that -- that came through was -- and this is
me, my interpretation of what I read -- was hold fi re
on requesting any i... |
1,152 | 11 | QUESTION:
In terms of financial assistance, you've received
a payment from The Skipton Fund?4
ANSWER:
Yes.
|
1,153 | 11 | QUESTION:
But then you weren't aware of the England Infecte d
Blood Support Scheme until the Inquiry was announce d.
ANSWER:
Yes.
|
1,154 | 11 | QUESTION:
How did you come to hear up hear about it?
ANSWER:
Thank heavens for Facebook and the networking.
I dug out my folder that still had the Skipton
information and emailed just wanting to know what t he
current state of affairs was and within that -- and
I didn't think to print it off -- it was basically
... |
1,155 | 11 | QUESTION:
How did that make you feel?
ANSWER:
I realise I must be quite punch-drunk with all of this
now because I just remember laughing. I mean, how
ridiculous is that?
|
1,156 | 11 | QUESTION:
Since then, you have applied to the EIBSS --
ANSWER:
Yes.
|
1,157 | 11 | QUESTION:
-- and have received some payments but how do you feel
about the process of applying for financial
assistance?
ANSWER:
It feels like the benefit system again in that, a bove
5
and beyond the basic payment, anything else you nee d
to fill out forms, you need GPs to qualify and stat e
how ill you ... |
1,158 | 11 | QUESTION:
You've described the process as:
"... incredibly humiliating and demeaning. My
feeling is if they have decided we qualify for some
kind of compensation support, they should stop maki ng
us jump through the hoops to get it."
ANSWER:
Yes. You're left in this position where if -- to be
left with any mo... |
1,159 | 11 | QUESTION:
You feel that the process to obtain payments or
different levels of payments from the EIBSS is the
same system and requirements that are on you then?
ANSWER:
Because they are looking for the same clinical
tick-box exercise and, no, I do not have lupus and no,
I do not have ME and no, I do not have MS. ... |
1,160 | 11 | QUESTION:
Joan, those are the questions I have for you. Is
there anything else you would like to say?
ANSWER:
Thank you.
|
1,161 | 11 | QUESTION:
I am just going to turn my back and ask Mr Lock i f
there's anything else.
(Pause)
Just one more thing, Joan, Mr Lock would like me
to raise. Do you feel anyone should act as a care 7
co-ordinator given that hepatitis C produces so man y
different symptoms?
ANSWER:
It loops back, Sir Brian, to wh... |
1,162 | 11 | QUESTION:
Can I just take a moment, sir, to check
one other matter. (Pause)
There's a second matter that I think I did ask
you but we can't instantly find it on the transcrip t;
so if I have, I apologise.
Now you know about the data being passed to the
National Register, how do you feel about the NHS
having... |
1,163 | 12 | QUESTION:
Lauren, you are here to tell us today about your Mum
and your Dad and what happened to them and what
happened to you as a result.
ANSWER:
Yes.
|
1,164 | 12 | QUESTION:
If you need a break at any time in your evidence,
please don't hesitate to say.
So your Mum, Barbara Palmer, was born in 1953?
ANSWER:
That's correct, yes.
|
1,165 | 12 | QUESTION:
Your Dad, Stephen Palmer, in 1958?
ANSWER:
Yes.
|
1,166 | 12 | QUESTION:
Then you came along in 1983?
ANSWER:
I did, yes.
|
1,167 | 12 | QUESTION:
I think we've got a picture of you with your pare nts.
Paul, if we could have 1455005, please. This is
from a local newspaper, I think.
ANSWER:
Yes. So I was a Christmas baby. So any child th at
was born on Christmas Day was documented in the loc al
newspaper; so that's, yes, me on Christmas Day.
|
1,168 | 12 | QUESTION:
That's the only picture you've got of your Dad?
ANSWER:
It is, yes. With everything that happened and
unfolded, I haven't got any other photos other than
this clipping.
|
1,169 | 12 | QUESTION:
We've got a photo of you and your Mum in hospital .
1455004, please, Paul. That's you and your Mum
shortly after you were born.
ANSWER:
Yes -- a Christmas present there.
|
1,170 | 12 | QUESTION:
Your Dad, Stephen, was a haemophiliac, had severe
haemophilia?
ANSWER:
He did, yes.
|
1,171 | 12 | QUESTION:
You very kindly provided the Inquiry with his med ical
records and your Mum's medical records. I know you
and your solicitors have gone through them, so I'm
just going to ask you about some of the bits and
pieces of information you've put in your statement.
None of it is a memory test and I know they're ... |
1,172 | 12 | QUESTION:
He began to receive Factor VIII products from at least
1979 onwards?
ANSWER:
Yes.
|
1,173 | 12 | QUESTION:
You have helpfully exhibited to your witness stat ement
some of those records and I'm just going to get the m
put up on screen so you can see them. It's 1455002 ,
please, Paul.
So we can see here records from Oxford
Haemophilia Centre from 1979 onwards. Could you go to
the next page please, Paul.
We... |
1,174 | 12 | QUESTION:
You have recorded in your statement, again, from
looking through the medical records, that your fath er
first had blood taken for the purposes of HIV testi ng
on 3 April 1985.
ANSWER:
Yes, that's correct.
|
1,175 | 12 | QUESTION:
Then on 13 May 1985 your father tested positive f or
HIV.
ANSWER:
That's correct.
|
1,176 | 12 | QUESTION:
You've also recorded in your statement that he wa s
diagnosed with hepatitis B in October 1992 and
admitted to the John Radcliffe Hospital with jaundi ce
and problems relating to his pancreas.
Do you recall knowing anything about the
hepatitis B at the time?
ANSWER:
No, never.
|
1,177 | 12 | QUESTION:
You've also discovered, I think through looking
through his records, that he was diagnosed with
hepatitis C also in October 1992?
ANSWER:
Yes.
|
1,178 | 12 | QUESTION:
Was that something you recall ever being discusse d at
the time?
ANSWER:
Never.
|
1,179 | 12 | QUESTION:
Now, your Mum on 22 May 1991 tested positive for HIV;
is that right?
ANSWER:
Yes.
|
1,180 | 12 | QUESTION:
She had previously been tested every six months a nd
had tested clear but that test was not?
ANSWER:
Mm-hm.
|
1,181 | 12 | QUESTION:
She also, you've discovered from the medical reco rds,
was diagnosed with hepatitis C in September 1991.
ANSWER:
Yes.
|
1,182 | 12 | QUESTION:
You've mentioned in your statement, again looking at
your Mum's records, a couple of references,
18 January 1991 and 17 December 1991, to blood bein g
taken for Douglas Nixon research. Do you know
anything about that?
ANSWER:
No, I don't. Not at all.
|
1,183 | 12 | QUESTION:
So your father was infected with HIV in consequen ce of
being treated with factor products.
ANSWER:
Mm-hm.
|
1,184 | 12 | QUESTION:
And your Mum was infected with HIV in consequence of
her relationship with your Dad.
ANSWER:
(The witness nodded)
|
1,185 | 12 | QUESTION:
Before you were told about your Mum's diagnosis, can
you recall much about your Dad and how his diagnosi s
or illness affected him?
ANSWER:
I mean, I was obviously a very young child so I d o
often remember, like, very vivid memories of him
self-medicating at home on the kitchen table; so it
was someth... |
1,186 | 12 | QUESTION:
You've recorded some of the details from his note s in
your statement. So the notes record, for example,
that in 1989 he was experiencing a burning skin ras h.
ANSWER:
Mm-hm.
|
1,187 | 12 | QUESTION:
Then in August 1992 he was diagnosed with
bronchopneumonia.
ANSWER:
Mm-hm.
|
1,188 | 12 | QUESTION:
October 1992 he had pancreatitis and you've also
picked up from his notes that in autumn of 1992 he was
being treated with PCP prophylaxis and AZT in relat ion
to the HIV.
ANSWER:
Yes.
|
1,189 | 12 | QUESTION:
Now, how did -- in the years before your Mum was
diagnosed, if you're able to remember, how did your
father's illness and the problems that you've
described for him impact upon yours and your Mum's
quality of life?
ANSWER:
So it wasn't not only just myself and my Mum, the re
was -- we lived as a family... |
1,190 | 12 | QUESTION:
Your father moved to live with his mother, I thin k?
ANSWER:
Yes, his mother and father. They lived in the sa me
village as us; so they were a couple of roads by
but ... yes, he was still close but ... yeah, he
moved.
|
1,191 | 12 | QUESTION:
You've picked up from his records again and recor ded
in your statement that he was diagnosed with parano id
psychosis in May 1992.
ANSWER:
Mm-hm.
|
1,192 | 12 | QUESTION:
Then if we could just have on screen please, Paul , the
hospital letter 1455003. So this is a letter from the
hospital to someone who I suspect was your Dad's GP ?
ANSWER:
Mm-hm.
|
1,193 | 12 | QUESTION:
We can see there reference in the first paragraph :
"This man was recently in hospital with a rather
bizarre mental state and behaviour pattern, which w as
thought to be due to HIV-related encephalopathy.
Settled down a bit and is, as you know, at home liv ing
with his mother. Says he feels better thoug... |
1,194 | 12 | QUESTION:
Then there came a point when you were about nine years
old -- I don't think you know the exact date, perha ps
it was 1992 -- when your Mum called a family meetin g.
ANSWER:
Mm-hm.
|
1,195 | 12 | QUESTION:
What can you remember about that?
ANSWER:
We were all called downstairs, myself and my two
brothers -- my Dad wasn't there, he was already awa y
then -- and, obviously, I'm trying to remember this as
a nine-year-old child, it's probably a bit patchy.
But my mother sat us all down and said that she was
... |
1,196 | 12 | QUESTION:
In the months prior to that, in the period betwee n her
diagnosis with HIV and her death, how did everythin g,
dealing with your father's diagnosis, dealing with her
own, worrying about her children, how did that impa ct
upon your Mum?
ANSWER:
Again, my mother found it very difficult to deal with.
Lookin... |
1,197 | 12 | QUESTION:
You've explained how in the course of 1993, middl e of
1993, your mother's health deteriorated quickly.
ANSWER:
Mm-hm.
|
1,198 | 12 | QUESTION:
Your father's health had been deteriorating for
a while, in any event, and they were both admitted to
the John Radcliffe Hospital in Oxford.
ANSWER:
Yes.
|
1,199 | 12 | QUESTION:
You didn't visit your Dad whilst you were there f or
all the reasons you've explained, but you did used to
go and see your Mum while she was in hospital?
ANSWER:
Mmm.
|
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