Unnamed: 0 int64 0 47k | index int64 0 357 | q_a stringlengths 22 51.4k ⌀ |
|---|---|---|
300 | 3 | QUESTION:
You mentioned digestive upsets, not being able to eat,
weight loss.
ANSWER:
Huge intolerances and not being able to eat after
6 o'clock at night. I couldn't have onions. I'm
still -- have to be incredibly careful around food.
|
301 | 3 | QUESTION:
What about the effects of the hepatitis C on you
mentally?
ANSWER:
I think once I registered it and realised that it was
something serious, once I was recovering from the b one
marrow transplant, I think I just felt ... just rea lly
frustrated that I'd got through something as seriou s
as cancer, an... |
302 | 3 | QUESTION:
Can you tell us what the impact of this and of yo ur
infection was on family life? I understand it had
a profound impact upon what you were able to do in
relation to your children.
ANSWER:
It was absolutely massive. Yes, my son (who's si tting
here), who I was pregnant with when I was diagnosed ,
he ... |
303 | 3 | QUESTION:
I think there came a time when you became
a grandparent but that the infection and the fatigu e
again impacted upon your ability to perform a carin g
role for your granddaughter.
ANSWER:
It meant that I couldn't do the childcare that sh e
would really have liked me to have done and sometim es
she woul... |
304 | 3 | QUESTION:
Then more broadly in terms of your private life a nd
relationships, what impact did the infections and y our
illnesses and the fatigue have upon those
relationships?
ANSWER:
Absolutely massive. I was in a relationship when
I first did the interferon treatment which I tried in
2004 but, because of my s... |
305 | 3 | QUESTION:
And then you subsequently married?
ANSWER:
I subsequently married in 2006 and I was having s ome
good days then and was completely honest about
everything. But over the months and years, my ener gy
dropped away more and more and more and more often he
was working and he was coming in at 9 o'clock and
... |
306 | 3 | QUESTION:
You also describe in your statement your infectio n and
the associated symptoms impacting upon your career and
your educational aspirations. Can you tell us
a little about that.
ANSWER:
Yes. When I got out of the bone marrow transplan t,
there had been no support for me. I was pregnant w ith
cancer ... |
307 | 3 | QUESTION:
You say in your statement it was about 2003 you h ad to
stop all of your counselling work because of the
strain on your health. You did some occasional wor k
after that, I think, at a pottery studio but then y ou
had to give that up in 2008.
ANSWER:
And I did a holiday let cleaning for six months o r
... |
308 | 3 | QUESTION:
Then you've also talked more generally in your
statement about making job applications and repeate d
rejections which you attribute to your health.
ANSWER:
I applied for care work and never had any word ba ck
and, of course, I'd be upfront. I would tell them
about my hep c. I'd never hear back.
|
309 | 3 | QUESTION:
You mentioned earlier the art course that you wer e
doing, art college. What happened in relation to
that? 2
ANSWER:
I'd always been torn in my life between going to art
college, I had an unconditional place at art colleg e
when I was 18 in Ipswich Art School, but it meant
living at home with my pare... |
310 | 3 | QUESTION:
Now, you've mentioned the cancer returning. I th ink
that was about 1998?
ANSWER:
Mmm.
|
311 | 3 | QUESTION:
You had to have various treatments, radiotherapy,
surgery in relation to that. But there was an impa ct
also, I understand, on your hepatitis C at that tim e.
3
Can you tell us a little about that.
ANSWER:
It was about the same time probably that the hep c
started to kick in but it was so hard to ... |
312 | 3 | QUESTION:
You tried various treatments in relation to the
hepatitis C. You've mentioned interferon. Was it
a 48-week treatment process?
ANSWER:
I did -- I lasted for -- I think I did 12 weeks o r
14 -- at 14 weeks they pulled me off because my blo od
counts would drop so low. So I went for acupunctur e,
I to... |
313 | 3 | QUESTION:
We'll come on to the Skipton in a moment but just in
terms of the side effects from the interferon 4
treatment that you attempted and had to give up, wh at
kind of side effects did you experience?
ANSWER:
From the interferon? Again, it's hard to separat e
from all the chemo damage but the Ribavirin k... |
314 | 3 | QUESTION:
You describe it in your statement in these terms:
"I would describe the effects of being on these
drugs as like falling into a deep and terrifying ab yss
of pain and despair", and you told your doctor over my
dead body would you ever take interferon again?
ANSWER:
That was when I was on the treatment an... |
315 | 3 | QUESTION:
So it was about ten years before you were able to
attempt treatment again for the hepatitis C?
ANSWER:
Yes.
|
316 | 3 | QUESTION:
You started a trial of Epclusa but discovered,
I think, that you had been to start with in the 5
placebo group?
ANSWER:
Yes, I was searching for trials. I tried for a t rial,
an AbbVie trial in London. My consultant knew I wa s
searching and he was actually running a trial and s o
he said, "I think th... |
317 | 3 | QUESTION:
But second time round you were --
ANSWER:
I knew if I was the one in six that got placebo,
I would get the real one but the problem was I want ed
it done by the January, because my daughter here wa s
getting married in Greece in the August and because
I got the placebo and then three months' treatment,
t... |
318 | 3 | QUESTION:
With the second treatment course on Epclusa, how did
you cope with that?
ANSWER:
It was okay. I had quite a lot of fatigue with i t.
I don't know if that was just the body working hard to
expel the hep c and I started to get tinnitus six 6
weeks in and I have mild to moderate hearing loss n ow
and I... |
319 | 3 | QUESTION:
You say in your statement other members of the tr ial
also experienced similar hearing problems in
consequence of the treatment?
ANSWER:
I have come across other people, because I work o n
a very big international hep c support group, I'm a n
admin, it's got 6,000 members so I see a lot of peo ple
on a... |
320 | 3 | QUESTION:
Now, this treatment was finally successful in cle aring
the hepatitis C virus?
ANSWER:
Yes, it's magic.
|
321 | 3 | QUESTION:
I think that was February 2016. You say you were
declared, cured and discharged. But the way you pu t
it in your statement I wanted to ask you about, Caz .
You say being discharged over the phone was a big
shock. After 24 years of constant appointments and
care, you felt adrift to start with.
ANSWER:
I ... |
322 | 3 | QUESTION:
You have asked, I think, from time to time since then
for there to be repeat fibroscans so that you can
either find out if there's any liver damage or be
reassured if there's not.
ANSWER:
I asked a few months ago if I could have --
|
323 | 3 | QUESTION:
You were told no?
ANSWER:
I was told -- well, I went to my GP to ask and he
said, "Well, where" -- he was brilliant he said,
"Where would you like me to ask?" He didn't know
anything about hep c. He didn't know anything abou t
the scans but he was willing to learn. And I said,
"Well, I'd like to go bac... |
324 | 3 | QUESTION:
Counselling: during the many years of treatment y ou
had did you ever get offered counselling?
ANSWER:
No. I did for the cancer but not the hep c.
|
325 | 3 | QUESTION:
Do you think that would have been useful?
ANSWER:
Possibly in retrospect -- possibly. I mean I had peer 8
counselling as I was doing my counselling diploma b ut
I don't think I particularly brought the hep c to i t.
I think it might have been useful.
|
326 | 3 | QUESTION:
You mentioned in passing the Skipton Fund and tha t's
what I wanted to ask you about now. You and the
consultants who you've mentioned have had little do ubt
over the years that your hepatitis C was as a resul t
of the transfusions and the treatment you received.
What happened when in 2004, when you wer... |
327 | 3 | QUESTION:
I'm going to ask for some documents to be put on
screen, Caz, so we can have a look at some of the
exchanges you had with The Skipton Fund. If you ju st
give me a moment. (Pause)
So the first document, Paul, is 622007, please.
Could you highlight the handwritten passage on the
form, please.
Have you ... |
328 | 3 | QUESTION:
Then if we could have document 8, please, Paul, s o
622008, this is the letter you received from The
Skipton Fund 14 December 2004, is it?
ANSWER:
Yes.
|
329 | 3 | QUESTION:
"It is with regret I must advise you that your do ctor
has advised us that the date of infection was in
February 1992 and accordingly outside the scheme
guidelines. In the circumstances I must advise you
your claim to the fund has been declined."
What was your reaction and response on receiving
that?
AN... |
330 | 3 | QUESTION:
I think if we go to document 9, 622009, we can se e
a letter from the Skipton to Dr Hamnon who is one o f
your consultants?
ANSWER:
He was the haematologist who took me through the bone
marrow transplant.0
|
331 | 3 | QUESTION:
We can see from the first paragraph of this lette r
dated 18 February 2005 that Dr Hamnon's obviously
written in support of your application to the fund and
the response is:
"As I am sure you will appreciate when the
Department of Health established the Fund last year
expert specialist advice was taken ... |
332 | 3 | QUESTION:
Then if we have document 11, please, 622011, Paul , so
we're two years further on now, 2007, and you are
still trying to ask The Skipton Fund, is this right ,
if they will reconsider their decision?
ANSWER:
At this point I was desperate. There was no trea tment
for me and I was absolutely desperate to b... |
333 | 3 | QUESTION:
If we can look and see you've set out here some o f the
supporting more recent observations from your
consultants in this letter. You've set out an extr act
from what Dr Hamnon said and then you have said thi s:
"As my bloods were given so soon after the
beginning of screening is it not likely that
un... |
334 | 3 | QUESTION:
If we go on to document 12 -- 622012, please -- w e see
the letter you received later that month, March 200 7.
If we just look down the bottom of the first page,
please -- just keep going down, the bottom of the
page -- sorry, I'm not sure whether I'm seeing it o n
the screen in the same way.
"Your appea... |
335 | 3 | QUESTION:
So this was the rejection of your appeal.
"We noted that the treatment which you believe
gave rise to your infection with hepatitis C took
place after 1 September 1991. Unfortunately, this
takes your application outside the terms of The
Skipton Fund and we have no discretion to change th e
time limits... |
336 | 3 | QUESTION:
Subsequently, you had, I think, some interactions with
the Blood Transfusion Service?
ANSWER:
Yes, I was -- I had numerous letters with, I thin k,
Dr Patricia Hewitt who was the head of the transfus ion
services, I think.
|
337 | 3 | QUESTION:
You were told that the donors who had given the b lood
that you had received had been traced and that none
were infected for hep c.
ANSWER:
For a long time one was missing and eventually wh en
that one turned up and appeared to be negative as
well, she said that eliminates, effectively
eliminates, the t... |
338 | 3 | QUESTION:
You've, I think subsequent to that, done a little
investigation of your own in relation to the
particular batch numbers that were examined as far as
you're aware. Could we have document 622004 on
screen. If you could just highlight the bottom par t
5
of that page, please, where it's got various nu... |
339 | 3 | QUESTION:
If we go on to the next page, please.
ANSWER:
The first four which were all given in one transf usion
on 5 May '93, the zeros have all been transcribed a s
2s.
|
340 | 3 | QUESTION:
Having found those discrepancies out for
yourself, did you take any steps in relation to the m? 6
ANSWER:
Yes. This was about two years ago. This is afte r the
Inquiry started happening. I thought, well, I migh t
as well try once more, gather my energy and try onc e
more, and I got more copies of ... |
341 | 3 | QUESTION:
In your statement, as well as describing this pos sible 7
mismatch between the batch numbers listed and the
units that were subsequently tested, you've identif ied
in your witness statement other possibilities that may
explain why it is that you were infected, as you an d
your consultants believe, in c... |
342 | 3 | QUESTION:
Having had your application rejected those years ago
by The Skipton Fund, are you able to claim anything
from the replacement scheme, the IBSS?
ANSWER:
Not a ha'penny, no. I've tried twice. The first time
I was told no. Then I tried again and she spoke to8
her manager and she rang me back and she sa... |
343 | 3 | QUESTION:
You've said in your statement that the rejection of
the application for any assistance from The Skipton
Fund has meant you've had to rely upon welfare
benefits, and you've had to endure the humiliation of
work capability assessments to get those benefits.
Could you tell us a little about that process.
A... |
344 | 3 | QUESTION:
Your statement raises a concern based both on you r own 0
experiences but also your wider experiences as part of
a hepatitis C advocacy group about the continuing l ack
of knowledge in the medical profession about
hepatitis C, its effects and its symptoms. What
experiences have you had with doctors th... |
345 | 3 | QUESTION:
Thank you. You produced some documentation in
relation to that. Can we just put that on the scre en
whilst Caz is talking about it. It's the NICE
document.
ANSWER:
So it cost £12. It could be provided to every si ngle
patient. I want every single person in the UK test ed
and treated. We have a 1... |
346 | 3 | QUESTION:
Caz, those are the questions I had for you. Is t here
anything else you wanted to say?
ANSWER:
Thank you. That was one of the things; so I've
covered that now.
My big thing is I want more advocacy, more
education and awareness to reduce the stigma and th e
fear. I know people who got hep c through ... |
347 | 3 | QUESTION:
Thank you.
ANSWER:
Thank you.
|
348 | 4 | QUESTION:
You started chemotherapy in the autumn of that ye ar?
ANSWER:
Yes.
|
349 | 4 | QUESTION:
You had a number of courses of chemotherapy and t hen
you underwent a full bone marrow transplant in May of
1989?
ANSWER:
Yes.
|
350 | 4 | QUESTION:
Now, I understand from your statement that in the
course of your treatment for your cancer, you had
multiple transfusions; is that right?
ANSWER:
Yes both during my treatment, most people probabl y
know that your blood counts go down whenever you're
given chemotherapy and so on so you have to have
transf... |
351 | 4 | QUESTION:
I think we can see that from some of your medical
records.
Paul, could we have 1416003, please.
That should come on the screen in front of you,
Kate, I hope. You should, I hope, see a letter
9 November 1998. In the last sentence it referred to
you being given a transfusion of platelets?
ANSWER:
Mm-hm... |
352 | 4 | QUESTION:
1988. Then if we could have the next exhibit 141 6004,
please. This takes us through to -- I will wait un til
it comes up on the screen. So this takes us throug h
to July 1989 and we can see at the end of the first
paragraph it says you were still requiring platelet
support at least once a week and you... |
353 | 4 | QUESTION:
Then if we could go, please, Paul, to 1416008, wh ich
should be a letter of 28 September 1989, in fact, i t
seems to be essentially to the same effect. It mig ht
be the same letter. Ah, the second page of that,
please. There's a letter 28 September 1989. That
should be coming on the screen in fron... |
354 | 4 | QUESTION:
That carried through I think pretty much well int o the
end of 1990?
ANSWER:
Yes, yes.
|
355 | 4 | QUESTION:
Could we just have up on screen, please, Paul,
1416006.
That's a letter 10 December 1990 and we can see
there the reference to platelet transfusion but if we
just go to the second page of that letter, if you
could just highlight the second sentence, please.
Thank you. There's a reference there, Kate, ... |
356 | 4 | QUESTION:
So this is December 1990. Were you at that time told
either that screening for hepatitis C was in hand o r
told the results of any screening?
ANSWER:
No, absolutely not, no.
|
357 | 4 | QUESTION:
You can take that down, please.
In terms of the transfusions themselves that you
had had over this prolonged period, '88, '89, 1990
were you ever given any advice or information or
warnings in relation to the risks of being exposed to
infection?
ANSWER:
No, not at all. I sometimes had reactions to
t... |
358 | 4 | QUESTION:
Now, in consequence of one or more of those
transfusions, you developed hepatitis C?
ANSWER:
Mm-hm, yes.
|
359 | 4 | QUESTION:
Can you recall when you were first told that you had
hepatitis C?
ANSWER:
It's very difficult going back over the years. T he
medical records that I was able to pin down mention ed
I think it was 1997 when a doctor first recorded th at
in a letter and, as far as I remember, that was the
first time tha... |
360 | 4 | QUESTION:
We'll have a look at that, Kate. It's 1416009,
please. That's a letter 15 April 1997?
ANSWER:
Yes.
|
361 | 4 | QUESTION:
If we have the second paragraph highlighted, we'l l see
it says:
"Investigations from her last visit have
unfortunately shown that Kate is hepatitis C positi ve
and this almost certainly relates to her intensive
blood product transfusional support post autograft in
1989 prior to routine screening... |
362 | 4 | QUESTION:
Then if we could just see the whole letter again
please. There's a paragraph towards the bottom of the
page which you have circled which says this:
"I discussed with her the implications of the
finding of hepatitis C including the risk of
developing chronic liver disease and risks of
transmission."
W... |
363 | 4 | QUESTION:
I think the way you've put it in your witness
statement was that you didn't comprehend what the
diagnosis meant in terms of your medical condition or
your life?
ANSWER:
No, no, not at all.
|
364 | 4 | QUESTION:
You are absolutely right the doctor whose letter we
have just been looking at, the letter makes referen ce
to there being an intention to refer you to
a gastroenterologist.
You say in your statement that you were
essentially lost to follow up from 1997 through to
about 2004.
ANSWER:
Yes.
|
365 | 4 | QUESTION:
Do you know what happened in relation to that
referral?
ANSWER:
I don't know. I think, you know, it's one of tho se
things that happens. I don't think I -- as far as
I can recall that I remember being told I was going to
be referred and I think when I didn't receive a let ter
of course I didn't k... |
366 | 4 | QUESTION:
You have got some recollection of some form of me dical
interactions potentially in 2004 but it's really on ly
in 2012 that we see matters relating to your
hepatitis C being picked up and discussed?
ANSWER:
Yes.
|
367 | 4 | QUESTION:
Can we have a look, please, at another document. It
is 1416011 this is a letter King's College Hospital ,
July 2012. We can see just down the bottom of that
first page under the heading "Diagnoses", at point 4
it says:
"Hepatitis C diagnosed 1992? Transfusions
acquired."
As far as you're aware that'... |
368 | 4 | QUESTION:
If we go on to the second page of that letter, pl ease,
the second paragraph, we see there a liver biopsy w as
done in 2012 and stage 4 fibrosis there identified.
Then if we could look further down the page, near
where that handwriting is, please, Paul:
"We discussed the risks and benefits of
hepatitis ... |
369 | 4 | QUESTION:
Your note when you looked at your records is:
"First time Hep C really discussed with me."
ANSWER:
Mmm.
|
370 | 4 | QUESTION:
I think you were also told around 2012 that the
genotype of your Hep C, which was genotype 3A?
ANSWER:
Yes.
|
371 | 4 | QUESTION:
In fact, if we get that up on screen, please, it' s
1416012, first paragraph, please.
We can see there the confirmation of the
genotype and then it says this:
"In particular the HIV test which is done
routinely in all patients before starting hepatitis C
treatment was negative."
Were you aware ... |
372 | 4 | QUESTION:
Now, I wanted to ask you about the treatment for the
hepatitis C and the various different treatment
experiences that you underwent. You first underwen t
treatment with interferon and Ribavirin in
2012-2013 --
ANSWER:
Yes.
|
373 | 4 | QUESTION:
-- for about 28 weeks was the intense course of t he
treatment?
ANSWER:
Yes, yes.
|
374 | 4 | QUESTION:
What can you tell us about that experience ?
ANSWER:
The experience wasn't as bad as I hear from some other
people. I generally felt a bit unwell and an issue
that I think has come from the hepatitis C but we'l l
probably touch on a different point as being
depression and tiredness generally, and I thin... |
375 | 4 | QUESTION:
Yes, you described in your statement that you fel t
poorly and had flu-related symptoms but, as you say ,
you were able to keep working throughout that
treatment?
ANSWER:
Yes.
|
376 | 4 | QUESTION:
There was then in 2014 a clinical trial that you were
involved in using Sovaldi --
ANSWER:
Yes.
|
377 | 4 | QUESTION:
-- one of the newer drugs?
ANSWER:
Yes.
|
378 | 4 | QUESTION:
But you had to abandon that for unrelated reasons ?
ANSWER:
Yes. I only had one dose of that and I couldn't carry
on with the trial.
|
379 | 4 | QUESTION:
Then it was finally in 2017 that you embarked upo n
a third course of treatment?
ANSWER:
Mm-hm.
|
380 | 4 | QUESTION:
That was successful in the sense that it cleared the
hepatitis C virus?
ANSWER:
Yes, yes.
|
381 | 4 | QUESTION:
What you've said in your statement after that thr ee
months of treatment you were finally pronounced cle ar
of the virus in February 2018 but you still have th e 1
liver damage?
ANSWER:
Yes.
|
382 | 4 | QUESTION:
And you still have to have regular checks in rela tion
to that?
ANSWER:
I do, because the degree of cirrhosis is enough t o
warrant six-monthly checks.
|
383 | 4 | QUESTION:
Were there any particular side effects in relatio n to
that course of treatment, that last course of
treatment?
ANSWER:
No, the final course of treatment seemed to be fr ee of
side effects, as far as I was aware.
|
384 | 4 | QUESTION:
I want to take you back to the effect overall of the
hepatitis C on you, both physically and mentally.
What was the main physical effect of the
infection? What's it been for you?
ANSWER:
It's very hard to specify or quantify. Certainly over
the years I feel I've become more fatigued in daily
life, ti... |
385 | 4 | QUESTION:
What about the mental impact? 2
ANSWER:
The mental impact, I would say that in terms of,
again, directly relating to the fact that I have go t
hepatitis C and these are the consequences, this co uld
happen in the future, I can't say that I've suffere d
a great deal of stress from just the knowledge itse... |
386 | 4 | QUESTION:
You've been very candid in your witness statement
about how that's affected you in particular from 20 11
onward --
ANSWER:
Yes.
|
387 | 4 | QUESTION:
-- when you said the fatigue and the depression t hat
you were experiencing, as it worsened you began to
plan suicide.
ANSWER:
Yes, yes, I did. I had a business. I ran a shop ,
a needlework quilting shop with a good friend of mi ne
3
for -- we started in 2005, so we had been running i t
for abo... |
388 | 4 | QUESTION:
You gave yourself an injection of insulin ten tim es in
excess of the normal adult dose.
ANSWER:
Yes, I did.
|
389 | 4 | QUESTION:
But you don't know whether you changed your mind or
whether you were concerned that you hadn't given
yourself enough to be effective? 4
ANSWER:
No, about five hours after the injection, I still
wasn't as bad as I thought I ought to be. I was on ly
beginning to have symptoms and I -- yes, I began to
thi... |
390 | 4 | QUESTION:
You did receive some assistance after the events that
you've described, in fact, through the intervention of
a police officer.
ANSWER:
Yes, yes. When I left the hospital a couple of p olice
turned up on my doorstep a few hours later saying t he
hospital had sent them out for me to bring me back
becau... |
391 | 4 | QUESTION:
So you had I think initially your GP prescribed y ou
some antidepressants?
ANSWER:
Yes.
|
392 | 4 | QUESTION:
But it was about October 2016 when you first got to
see a psychotherapist?
ANSWER:
Yes.
|
393 | 4 | QUESTION:
And you had for a period of time I think quite a lot
of sessions.
ANSWER:
Yes, a year, a year's worth.
|
394 | 4 | QUESTION:
Ultimately, was it helpful?
ANSWER:
I suspect not. I'm not sure that it was. I thin k
more long-term help has been my very good friends, my
Christian faith to some extent, although I've
struggled with that probably because of the
depression, you know, everything's bound up togethe r. 6
But I don't k... |
395 | 4 | QUESTION:
Can I ask you to describe the effect, the toll on your
daily life, of the fatigue and depression that you
experienced in consequence of the hepatitis C
infection.
ANSWER:
It's sort of increased over the years, I suppose, to
the point where it's affected work. Certainly,
despite my period running a s... |
396 | 4 | QUESTION:
You said in your statement that that fault for wh ich
you were fired, not something you would normally do ?
ANSWER:
Yes.
|
397 | 4 | QUESTION:
You were very upset by it, you were suffering fro m
fatigue and concentration problems because of the
hepatitis C and then that dismissal had a knock-on
effect for you in terms of how you then progressed
with your work.
ANSWER:
Yes, yes, that's right and that's obviously
a long-term worry. I'm still ... |
398 | 4 | QUESTION:
You had a period after the cessation of the emplo yment
you have described, you had to apply for universal
credit for a period of time --
ANSWER:
Yes.
|
399 | 4 | QUESTION:
-- which you didn't particularly want to do but - -
ANSWER:
No.
|
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