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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 since the
blood transfusion and I used to be a very fit and
determined person. I knew that the treatment had s ide
effects but the possibility of long-term or possibl y
permanent side effects were never discussed with me .
I know that there was enough research in the US for
them to have doubts about the treatment and I am no t
aware of any information being withheld from me but if
you don't know the questions to ask, it's difficult to
say."
You now reflect whether you would have pushed so
hard for the treatment if you had known about the
effect of it in a longer term sense; is that right?
ANSWER:
Yes, and thank you for that prompt. 3
Nothing happens in isolation and if I just give
you a thumbnail sketch, I knew I was infected, I wa s
aware it was impacting on me in unknown ways. I wa s
a single parent. My Mum died when I was 22/23. I had
two girls approaching that age and I was just
absolutely determined to be well.
So with the help of my very supportive GP, we
were looking for treatments. I even started lookin g
at what it would cost to do that privately because
I was aware that all the treatment seemed to be lin ked
to trials and then it was just pot luck if a trial was
being run in your area and you qualified for the
treatment.
Through my GP, he heard of a trial that
originally was a three-drug treatment and I just
missed the boat. That was closed.
Then Taunton were given the chance of running
the interferon Ribavirin treatment and originally
I had had a biopsy that had shown I'd been impacted by
hep c but if I wanted to qualify for this chance on
this treatment, I would need another biopsy, which is
not a pleasant process.
We went through that and found that my scoring
was just below the benchmark to qualify for the
treatment. So, again, was I going to get treated? To 4
this day, I'm not sure why but I did get on the tri al.
I think it's partly because I was pushing so hard a nd
keen but mainly because somebody dropped out becaus e
they were too ill.
Now, my logic, and my GP had agreed, was if you
can have the treatment early enough it's going to b e
more successful, if only because your body is able to
cope with the treatment. A lot of the trials, peop le
had to be really ill to qualify for and these
treatments are tough or they were, but for whatever
reason I got on the trial and I felt very fortunate .
|
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 wall again and being
made to feel almost neurotic that I was trying to p ush
for treatment. I did have it explained to me that
there was only a 50/50 chance, that it is tough, th at
there were side effects and even today they use the
term long-term side effect but the implication that
that is only within the treatment and then a recove ry
period. I have yet to find mention of permanent si de
5
effects.
|
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 starte d
off again relatively well bearing in mind my heart
goes out to half the people I've heard just because
they were so poorly by the time they were facing th ese
treatments. They had been living with liver proble ms.
I truly mean it when I say I was lucky. If it
had to happen, I was lucky that my liver was still
healthy because I managed the first four -- yeah, t he
first four weeks I was thinking, "I can do this".
I'd enrolled on a part-time art course, save my
sanity, always wanted to do art. You get into
a routine where you inject yourself once a week and
you've got tablets to take. The interferon, the
injection would give you flu-like symptoms which ot her
people have confirmed and I worked out a system whe re
I knew that I would be feeling rough for at least
three days. I did home-made soup, fresh bread, had
that in the fridge so limited effort in eating. 6
I was -- there's a whole chunk, isn't there. There 's
layers and layers to this.
I was by then living on my own by choice. Both
my girls, thank goodness, were off in their
independent life, uni ... I deliberately didn't wan t
them to know because I did know this was going to b e
tough and, in a way, I apologise now because they'r e
catching up.
Yeah --
|
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 would inject myself and i t's
silly to say it now but for some reason that seemed
important.
|
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 my
body was really struggling.
I think technically my platelets and everything
else that they looked at were fine. My body was
obviously under stress but there was no clinical
reason to stop, so I was determined to keep going.
But by then the symptoms had intensified.
My eyes -- I wouldn't need another prescription
but the ability to focus, fine focus and read, woul d
come and go. So I couldn't get lost in novels whic h
when I was really poorly was something that was
something I liked to do.
|
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 if I went out during brigh t
sunlight it was hat, long sleeves, sunscreen, or --
and I thought this was quite smart -- I'd go out
really early in the morning or in the evening but
there were times when I needed to be outdoors but
couldn't really walk. So then the next best thing was
to sit by the window.
|
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 just not looking in the ri ght
places.
|
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 set of combination of events could ever ha ve
9
come together but [redacted], he was on holiday in
Somerset, became critically ill with pancreatitis a nd
landed up in the hospital that not only I was opera ted
on but that I had my treatment in.
The impact of the stress of worrying about him,
I think, was part of the trigger but I did walk dow n
a corridor -- most -- quite a lot of the hospital i s
now changed so I approached the hospital and it fel t
like a new place but every now and then you turn th e
corner and you're in the same old corridor and I'd
never experienced this before but it isn't even an
intellectual process, it's a sheer body impact of - -
it manifests as shaking and sweating, a sense of dr ead
and you don't quite know where the danger is coming
from.
I thought, perhaps I was -- well, I didn't know
what I thought. I had to go sit in the loo for
a while. That happened on one occasion when I walk ed
down a corridor and then I realised it had been my
route to the chemo ward, which is where my treatmen t
had been run.
Then another night I was with [redacted], who
was actually sleeping quite peacefully. But he has
learning difficulties, so we had to -- or we took r ota
change so that if he woke up, he wouldn't start 0
pulling out his tubes. That was fine. We were
dealing with that. But then the crash button alarm
went for somebody else and just that noise ... I ha d
another visit to the toilet to shake.
|
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 first
assessment.
ANSWER:
The first assessment, I believe, was after the
six-month benchmark. So I know I'm struggling.
A friend very kindly drove me to the appointment an d
it was a tremendous effort just to get there, and
I got ready for the battle, went in and was actuall y
seen by a GP, and I don't know if everybody is
anymore, and the first thing he said as I sat down is
"I'm terribly sorry, had I seen your file before yo u
would not have been called in", and I'd been ready for 1
a fight and there he was being nice so I burst into
tears.
|
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 th at
position myself. At best, even if you are treated
with common courtesy and politeness, it is a diffic ult
place to find yourself in but I did on one occasion
have quite a difficult conversation with a woman wh o
basically said, "Well, it's not chemo, what's the
problem?"
|
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 found one project j ob
that I'd really loved and then I'd had to give that up
because of the treatment.
There was a real issue for me about employment
because I have people skills, I work for the
Government in teaching, youth work, and the criteri a
3
about offering up your medical history is just
a given.
Prior to this completion of the treatment, I'd
already experienced issues about having hep c, feel ing
that I would have to declare it, and I know because
it's a small network within the people-working fiel d
that there's at least two jobs that I didn't get
because of hep c.
So here I am out the other side of a really
horrendous couple of years, talking to my GP and ju st
basically saying, feeling, I had this battle again.
At what point -- you see, sorry, I'm interrupting
myself but one of the hard things with the treatmen t,
you do not get a certificate and well done madam yo u
are now clear. We slipped into a limbo of we have to
wait to see if it might not come back. So it was
years before I actually got to the point where I co uld
say I have absolutely cleared hep c.
|
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 through every single health thing until now
and, yeah, it was a job. Believe it or not it was
a job I enjoyed because I was the right side of the
table to deal with people who were struggling.
|
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 position where I wasn't too sure
about my health. There was quite a lot of project
work going on at the time and I applied for one whi ch
would have been short-term and was, in fact, basica lly
overqualified for, knew somebody on the panel who
afterwards very kindly took me to one side and said ,
"You were doing really well. It was just the quest ion
of your health".
Actually, I took that on the chin because 5
I thought that particular project, maybe that was
fair. It would have been really intense. So the n ext
job I remember applying for would have been I think it
was two days face-to-face and a day admin reporting
for whatever it was, 18 months, and I think it was
somebody on the panel actually raised the question of
my health and energy, which surprised me but thinki ng
on my feet I said, "Thank you very much for asking
that question because I can affirm that I'm doing
okay", or words to that effect but, no, I didn't ge t
that job either.
Nobody actually said anything like are you
infectious, are you this, are you that, but it was
definitely an issue.
|
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. Again, if I use some imagery, where I am no w on
lots of levels I count my blessings regularly but i t's
within the context and the image in my head for a l ong
time, I don't know if anybody ever saw it, was of
somebody trying to cross the Grand Canyon on
a tightrope.
As long as I remain balanced (so not overdo it,
not overstress, not overcommitted), I can remain
upright and have a pretty good life with a lovely
view. But it takes effort even just to do that, of
concentration, of monitoring, of keeping as steady as
I can, and my family will know that's quite tricky
because I'm quite a spontaneous person and likely t o
say yes when I should say no to stuff.
I'm now of a certain age where just becoming
older is having an impact. Where in the past a bit of
determination, a bit of steady keep fit, watch your
7
diet, everything else, would see me through.
The reason I'm not working now is I had bad flu
2017 and it's taking me this long to get to a point
where I can commit to maybe going away on holiday
because what you deal with all the time is just not
knowing quite how the day is going to end. It is
incredibly easy to overdo it.
If you can manage to just deplete yourself and
deplete yourself but stop, then yes rest and I can
just about get on with the next day. If for any
reason you have to push yourself like going home
tonight is going to be tricky because I do not know if
it's a long journey, we get delayed. If I go into
what we call deficit then that's a week in bed. Am
I glad I'm alive? Yes, I am and so many -- so, so
many -- aren't.
|
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 them to make a statement because
with all honesty I don't know the impact it's had o n
them.8
|
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
cry.
It is hard enough to be deflected from a career
that you really put effort into choosing, training for
and felt you were making a difference, but then to not
be able to be the parent and grandparent you had ho ped
to be is beyond -- I can't give you the words for
that.
|
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 something.
ANSWER:
I think this was to the consultant.
|
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 of Health and will provide a facility fo r
the future monitoring and long-term assessment of H CV
infection within the UK."
Then the third paragraph, please, Paul.
"I have enclosed an information sheet explaining
the purposes of the registry which you may like to
pass to your patient. No patient will be contacted
directly. However, this information sheet has been
provided for clinicians who feel they would like to
notify their patients of their inclusion in the
register."
It is explained that the register will include
information on all patients who have become infecte d
with hepatitis C on a known date and it will gather
information on other people who are definitely not
infected. 0
Were you ever informed that you had been added
to the register?
ANSWER:
No.
|
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 patient in the registe r.
Your doctor can then pass information but not your
name from your medical records to the register in
order to advise us of your state of health. He or she
can also keep us updated with your progress."
Were you ever told whether further information
about you from your medical records has since been
passed on?
ANSWER:
No. But this piece of paper then made sense of
something else that had happened in my life, in tha t
I was approached in about '94 -- no, it must have b een
after '96, whenever it was -- by the group that wer e
taking that first action that eventually ended in t he
Skipton Fund and I did join in that process but I a t
1
no point had looked to join. Life was too full.
I wouldn't -- it had not even crossed my mind to lo ok
at sort of litigation or anything. So somehow
somewhere my name had been shared and I don't remem ber
even how I was approached, whether it was a telepho ne
call -- I eventually had a letter and liaised local ly
with Clarke & Son and they were linked with whoever
was organising the action.
|
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 insurance because within the
time-frame historically the hep c was being lumped in
with the HIV and it was the time of all the negativ e
publicity and I was informed that insurance compani es
were counting them as one and the same, and if I ha d
a refusal on an application, that would carry forwa rd
to any other application.
|
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
stated they hadn't passed on my information to this
new body because I had never granted them the
authority to do so, which is good. But then they
didn't contact me to tell me they needed my authori ty;
so nothing got passed.
|
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 are or not. It comes back to one of my
original points which was this thing of if nobody i s
recording our chronic fatigue-like symptoms, there is
no recognition of them as a condition. If you don' t
tick the right box on the conditions list, then you
don't get benefits, you don't get the next notch up .
|
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 modicum of sort of dignity, if I go o ut
of my front door, I hold my head up, I dress well a nd
I try and present well. If you turn up at a benefi t
office like that, you're immediately disqualified. So
what do I do? Do I then go in still upright but th en
tell them of the bad days? To tell them of the bad
days is doable but you're talking to a stranger,
you're talking to somebody who has no concept of wh at
I mean when I say I'm having a bad day. To them, t hat
maybe means they stubbed their toe. To me, that me ans
I'm in pain, my joints ache, I'm potentially runnin g 6
a temperature. If I push it, I will get the shakes .
If I push that beyond that threshold -- I have issu es
with body temperature regulation, so I can go cold or
hot. If I push that, then I'm in bed.
|
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. "I cann ot
tick your box for you, madam" is what I land up say ing
but, no, that does not mean I'm fit to work.
Currently, I've worked really hard to get back
to a certain level of fitness. The only reason
I haven't been able to return to my job is what
I cannot do is guarantee to you that every morning for
my 9 o'clock shift I can turn up and do five hours.
|
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 what I was trying to say.
I don't quite know how we resolve this but just by the
sheer weight of numbers -- thank goodness for this
Inquiry that so many people are able to come forwar d
and tell their stories -- but just in this first we ek
I've heard enough, I've had enough personal validat ion
around these non-specific symptoms that has no labe l
but that I begin to feel is connected with either t he
impact of having had hep c, even if it's now cleari ng,
and/or the treatment that I had to clear it.
If there is no one body or anybody ever trying
to collate that information, it remains anecdotal. If
it remains anecdotal and not clinical, it can be
disregarded by the benefit people and everybody els e.
|
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 data about you?
ANSWER:
That's a good question. There are so many layers to 8
everybody's story. Fundamentally, I do not want to
damage the NHS. I am no longer angry.
What I would like is to know that things are
done with integrity, that the core of it is caring for
the patient. So to say "no, there should be no
registers", no; but please ask us, please let us kn ow
why and what's going to happen to it. Because that
was another thing, actually, that it's just reminde d
me. I joined the medical trial because I wanted to be
well but then had a naive expectation that I would get
some idea of feedback. How did it go? What was th e
outcome? What were the results? I was quite
surprised to get the impression that even the peopl e
processing me through this didn't really quite know
where the information was going. Maybe the consult ant
did but the person that you see on your day-to-day
clinical how are you, whatever, and I did ask sever al
times just out of interest, no other reason, you kn ow,
did it help? What were the results? Never found o ut.
|
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 not
your records.
So your father was under the care, for his
haemophilia treatment, of Dr Rizza at the Oxford
Haemophilia Centre?
ANSWER:
Yes, that's right.
|
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 can see if you look, Lauren, in the second
column on the left a range of different products be ing
given to your father, references to Hyland, to Koat e,
and further down to Elstree. That presumably is al l
you know about the treatment that he was given?
ANSWER:
Yes.
|
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 something that was always very prominent within
our family, but it was just considered as normal.
I don't remember when it actually started. It was
just always something that occurred, so it was neve r
really anything that I thought was abnormal.
From what I remember, he was always -- he had
disabilities like he had problems with his joints. He
was on crutches. He was never sort of fully fit an d
healthy. Even though I was so young and didn't
understand the haemophilia side of things, I always
knew -- I was always kept at a safe distance from m y
father, so I knew not to go near him or to knock hi m
because he was a severe haemophiliac. If he just h ad
the slightest knock that could have been detrimenta l.
So it was something that was always, always
there but, yes, it wasn't something that I thought was
strange. It was just my normal and he just
progressively -- I think, like, I do sometimes
remember that he was able and to get up around and
would then not be so. It's not really clear but he
did eventually get worse and nearer the time sort o f
towards his death he did actually move out of the
family home. I think that was my Mum trying to
conceal his complications because he was very, very
sick towards the end.
His quality of life a couple of years before or
a year before was terrible. He didn't have a life.
Some of the complications and the infections that h ad
taken hold were, having read through his medical
notes, I don't even know how he got through some of
the stuff he did but, yeah, it was undignified.
|
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. So my Mum had two son s
from a previous marriage so we all lived as a famil y
unit.
Not only did my father, obviously, subsequently
have all these physical effects, it did affect him
mentally as well, and the fact that he obviously ha d
all of this on his shoulders, knowing that he had t his
death sentence, he found it extremely difficult to
cope with and naturally took it out on the family - -
not me personally but I do remember times when he w as
quite violent towards my Mum and my brothers.
I remember hiding under the kitchen table. He'd
come out and it would almost sort of come from
nowhere. So it was obviously something that was,
like, the HIV was taking hold and mentally affectin g
my father because before then we were a happy famil y.
I've always -- we've grown up as a normal family.
I was the youngest, terrorising my brothers so we w ere
a happy family, a very close family, and I do know
that my Mum and my father did have a very loving
relationship. I mean, they were very much in love but
I, looking back on it, I do know that it did affect
him and impact him very much so and, yes, it did ca use
rifts, cause problems.
Obviously, my Mum wanted to look after her
children and their well-being, so that was another
factor that played with -- they thought it was best
that my father should leave the family home.
|
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 though his
memory is still slightly poor."
So you found confirmation in the records that
his behaviour was being affected by the progression of
his disease?
ANSWER:
I mean, at the time I didn't know this so I've al ways
had -- never had a close relationship with my fathe r
and was always, sort of, had resentment towards him
because I didn't know that there was a reasoning
behind that at the time. So I've grown up for year s
disliking my father because of his actions towards me
mother and my family.
So it's -- I mean, it's nice to have that
clarification and that, like, I can sort of justify it
but I'll never get those years back where I've
actually -- all my love is channelled into my mothe r 0
because I wasn't close to my father.
|
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
very, very, very sick and there was no way she was
going to get better and she said that she had HIV. Of
course, at nine years old I had no idea what those
words were but I instantly broke down into tears
because I knew it was terrible news. We'd never ha d
a meeting like that before.
It all happened -- it all seemed to happen very
quickly from there on. I think my Mum tried to
conceal her illness as much as she possibly could
until she had to say something and it felt like
within, I think within a matter of months, I think it
was during the school holidays -- so it all happene d
within school holidays -- she was taken into hospit al,
relatives came to look after us so we were still in 1
the house, and she passed away in August.
|
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.
Looking back through her medical notes and memories ,
she did -- she really struggled with her own sort o f
mental health and worry. She drank quite a lot.
I have memories of her like on Sundays or she'd go on
just drinking. And then I remember being really,
really scared because having your mother who you do ted
on, I literally would follow her around the house l ike
a little shadow. She was literally everything to m e,
we were very, very, very close, even though I was o nly
so young, and then to see and watch her suddenly
become this different person and be intoxicated aro und
me, there were often times when I was very -- being
very scared but knowing that it's not my Mum. And
with being a child you pick up on things unconsciou sly
and know that something's not right but you don't k now
what. So you know that something's obviously going on
but not understanding the situation.
My Mum was just in despair and didn't know what 2
to do and I think alcoholism was her only escape an d
release and made her feel better and more confident .
So it was something that sort of did occur quite a lot
towards the end.
|
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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