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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, and the cancer came back five years late r,
so I got through two life-threatening rounds of can cer
only to be given another life-threatening illness. So
I kind of -- I'm a bit of a not a "why me" but a "t ry
me" person, so I just battle through it anyway.
|
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 was fostered out at six months old because of th e
cancer chemo. But the hep c impacted my energy so
much that when I should have been recovering and
taking my three children back and being a good Mum
again, I was constantly having to -- not attending,
I didn't attend my daughter (who's sitting here as
well), I didn't attend her graduation, which broke my
heart that I couldn't travel from Devon to York at
that time.
The fatigue means you don't do so many things
that you would like to do with your children and yo u
don't give them the quality of care that you'd like to
give them and, because of the cancer and then the
hep c, they were farmed out. They were -- [he] was in
and out of foster care for years, backwards and
forwards. We co-parented and we held it together b ut
it was hard.
|
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 would read it that I didn't really want to.
|
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 suppressed bone marrow from
the bone marrow transplant, I only lasted 12 weeks on
it. But my partner at the time was keen paraglider
and kite surfer. We hadn't been together very long
and I don't blame him but it was very, very hard th at
he chose not to stay with me, he chose to go off to
kite festivals and to leave me to it, and with the
Ribavirin as well, which causes depression, I was i n
a very, very, very dark place for some months. And
having to make a two-hour trip to hospital every we ek
as my blood counts were falling and I couldn't get
treatment in the surgery in the village, so I had t o
keep going to Plymouth and, yes, him not being ther e
for me ... and then --
|
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
saying, "Come on, let's go for a drink", and
I couldn't move. It began to cause friction and
finally I think in 2010 we separated but we were st ill
trying to keep our marriage together by not living
together.
Then in 2014 when I began the Epclusa trial, the
clinical trial Epclusa, we agreed to officially par t.
So I kind of set him free to have children because
I couldn't give him children, set him free. The bo ne
marrow transplant had rendered it impossible for me to
have any more children, and he was younger when I
married him and then he decided he did want childre n.
So I set the divorce papers in progress as I began the
treatment for the hep c. So that was very sad but ... 0
|
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 and I'd asked for support and there was no
support at all. So as soon as I recovered from the
bone marrow transplant, I set up a cancer support
group in my nearest town which I ran for ten years.
So in the course of doing that, I trained to be
a counsellor and -- sorry, can I just ...
Yes, so I trained to be a counsellor and the
placement on my course was working with people with
alcohol dependency and so I continued doing that af ter
my training and after I closed the cancer support
group, because everybody in it was dying and it was
just too painful, and the best -- the closest frien d
I was running it with was also going to die from he r
cancer, so we closed it before she died.
But then I carried on with the counselling and
was working for an organisation called ALCAS and th en
for Addaction in the hospital in Bideford and I jus t
loved it, absolutely loved it, but I'd come away an d
I'd see two or three clients in a morning and I'd c ome 1
away so drained that I couldn't function for the re st
of the day. Then within a certain period of time
I realised I just wasn't up to it anymore.
|
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
a year or something. I used to go and do three hou rs
cleaning. I couldn't move for the rest of the day and
that caused friction in our marriage because he was
free on a Saturday and I would do that all Saturday
morning, I used to take my son with me to do it, an d
he'd get upset because I couldn't move. I literall y
could not move for the rest of the day.
|
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 parents for another year and
I wasn't -- I needed to spread my wings a bit. So
I went to university and did a psychology degree.
So all my life there's been two branches of the
psychology and the art. So at that point I decided to
go back to art school and do my art degree. And I was
just so, so tired. It was up two flights of stairs .
It was a 25-mile drive, up two flights of stairs, a nd
by the time I'd spent a day -- I loved printing.
I was doing prints called "grin and bear it" or "pu t
a brave face on it", all to do with my illness and how
I present to the world and what's going on inside, how
we wear a mask, and by the time I'd done a day in t he
print room I'd come home and I was good for nothing
for the family. I couldn't move and eventually I h ad
to give it up.
|
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 separate i t
all. Yes, I was doing my counselling diploma then
because they gave me a room in the hospital (becaus e
it was so far for the radiotherapy, I used to stay in
the hospital for the week days), somebody else look ed
after the children, and I wrote my essays in there.
And, yeah, it was about the same time that the hep c
started to really sap my energy. But it's very har d
to separate.
|
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 took traditional Chinese medicine, milk thistle, all
kinds of herbs and supplements, researched it. I w as
buying in from America packages of herbs but
I couldn't afford it. Because I was on benefits,
I just couldn't afford it and I couldn't get the
support from Skipton.
|
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 knocked my
blood counts really, really low. The interferon qu ite
possibly had lasting cognitive effects, might have
been connected to the fibromyalgia. It's difficult to
know.
|
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 and my partn er
left me to go paragliding and, yes, I've never been --
I'm not a depressive person, I've never known
depression, but it was like a crawling pit. I was
seeing demons. I was hallucinating. I was doing
artwork at night drawing monsters and ... horrible,
horrible, horrible treatment.
|
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 this would be good for you", and
I said, "No, no, no, I want these drugs". He said,
"These are better", so I was ringing the research
nurse every single week so she wouldn't forget me a nd
made sure I got on it. But, yes, I got the placebo
run the first time round.
|
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,
three months off, then I had to re-screen to be
accepted again, it meant that I didn't finish
treatment until about two or three weeks before the
wedding, but I just got it in.
|
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 still have the tinnitus. I can't say it's
definitely connected but I think so.
|
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 all the different medications and other people o n
one of the drugs, Sovaldi, do report tinnitus.
|
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 did, I did, because I was discharged by my rese arch
nurse in a phone call and she rang me up and said,
"You're cured, that's it, and you don't need to com e
to the clinic anymore" and my hepatologist, Matthew
Cramp, and my haematologist, Mike Hamnon, had been
7
working together all those years in my care and
I'd had felt very held and very safe, brilliant,
brilliant, brilliant doctors both of them. I can't
thank them enough for all their care but, yes, I
suddenly felt very -- because I didn't have fibrosi s
I wasn't eligible to have the follow-up care.
|
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 back to the liver unit", so h e
sent a letter there but I got the reply back with,
"You don't need one because you didn't have fibrosi s".
|
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 were
a single parent, you had your three children depend ent
upon you, you applied to The Skipton Fund for help.
What was the response?
ANSWER:
"No. You don't fit our criteria. Our cut-off da te is
September 1991."
|
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 got that, Caz? This is in extract from
the application form and the handwriting is that of
your doctor, your consultant:
"This lady received a number of blood 9
transfusions from 1992 to 1993 when undergoing
chemotherapy for Hodgkin's disease. Whilst infecti on
occurred outside the timings in this form, no other
risk factors are present and the hospital treatment
and transfusions are thought to be the cause."
So that was your consultant's supporting
confirmation in your application?
ANSWER:
Yes.
|
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?
ANSWER:
To fight them.
|
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 regarding the
mechanical aspects of the Fund and this included th e
screening of blood products for hepatitis C. In th is
respect the information provided to the fund by the
Blood Transfusion Service was that all blood produc ts
after 5 September 1991 used within the NHS will hav e
been screened for hepatitis C."
Is that still on the screen because mine's gone
down.
So that was again the rebuttal from the Skipton
Fund to Dr Hamnon. You I think appealed that.
It is 6220010, please, Paul.
I hope you will see a letter from you dated
25 March 2005. Do you have that? It should be com ing
up now. So this was your appeal to The Skipton Fun d.
You've referred in the first paragraph to the lette rs
of support from your specialist consultants and you 've
said this in the last part of the first paragraph:
"All three of these consultants are in full
1
support of this application and share the professio nal
opinion that my hepatitis C was indeed acquired fro m
blood products received by me during treatment in 1 992
for cancer."
Then you have talked about living each day with
the malaise of being hepatitis C positive, the
struggle to get through each day, single parent of
three children unable to work. Then you say this w ith
in final paragraph:
"To impose an arbitrary cut-off date which
excludes legitimate cases such as my own seems
merciless and mechanistic when dealing with people who
are in real trouble with this insidious disease."
What was the outcome of that request for an
appeal or review?
ANSWER:
Another rejection.
|
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 be able to
buy these herbs in from America to try and cure the
hep c myself because there was no treatment in the
pipeline and the only way I would be able to do it 2
would be if I was granted the £20,000.
|
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
unscreened blood could still have been in the syste m
or that infected individuals were still giving bloo d
as they had not yet tested positive, i.e. they were
not yet making antibodies."
Then you have referred to Dr Cramp and his
letter:
"... well known that there are rare cases in
which the Hep C- RNA can be present sufficient to
transmit infection in the absence of an antibody
result (sic) ."
And then Dr Hamnon again:
"Specifically it seems quite likely that the
transfusion was the source of your hepatitis C. It
may be that one of the donors was indeed the source
but hadn't yet made antibodies to prove positive on
the screening test."
Then Dr Cramp also pointing out the possibility
that you might have been given blood products that had 3
been frozen but donated prior to September 1991.
Now, you have made various arguments in that
letter. Did you ever receive from The Skipton Fund
anything which addressed in any kind of detail the
specific points you were making there?
ANSWER:
No.
|
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 appeal was considered by the panel at its
meeting on 23 March."
Have you got that? Then the Panel reviewed the
entire file of papers. Can you see that, Caz?
ANSWER:
Yes.
|
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 ... we regret we must refuse your appea l."
Now, did you have any further dealings directly 4
with The Skipton Fund after that refusal of your
application?
ANSWER:
No, I don't think so.
|
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 transfusions as a source of your
infection. But she did say to me in a phone call,
but, you know -- basically, she suggested that she
believed that I had got infected through the treatm ent
but it would be like searching for a needle in
a haystack. They were her words.
|
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 number s
and handwritten entries. Thank you, stop there.
So we've got -- well, can you talk me through,
Caz, please, what we have here and the next page as
well.
ANSWER:
What we have here is the original letter that was
written by my haematologist in 1997 asking for the
batch numbers to be checked, and I obtained copies of
the actual blood reports (which I have copies of an d
you have copies of) and I cross-referred and the ba tch
numbers have not been transcribed exactly right.
So in the first one, all the ones with an
asterisk are slightly out. You can see the first o ne
reads 68906TT9 and the actual number is 689067T9.
|
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 bits of my blood
records and I rang the Blood Service and asked them if
they could -- you know, I said I'd found these
discrepancies, could they please check the numbers,
and I was told I didn't have the authority to ask f or
that and I would have to go back to the original
haematologist who asked for these checks back in 19 97,
who I know is retired.
So I went begging to my brilliant haematologist,
Professor Cramp, who is such a busy man and I hate
bothering him. So I went begging to him with a let ter
saying, can you, you know -- transcribed, sent all the
copies of the original letter and the blood reports
and another copy with my red number changes on it a nd
that was November, I think, 2017.
He sent that off internally to a haematologist
at Derriford, because he's a hepatologist, to ask h is
advice and he said he'd get back to me, and I haven 't
heard any more and I just haven't got the heart to
bother him because he's such a busy man and he's do ing
such brilliant work.
|
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 consequence of the blo od
transfusions. You've said this:
"The possibility that a donor with hepatitis C
could have evaded the screening process, the antibo dy
tests used at the relevant time are renowned to be
fallible and, in addition, early on in any viral
infection an individual can be infected yet have
negative tests for the virus. Alternatively, possi ble
for someone to have been infected at the time they
gave blood but not at the point of the next donatio n."
Those are the very points that Dr Hamnon and
Dr Cramp were effectively making on your behalf in
your correspondence with the Skipton?
ANSWER:
Yes, I'm not any kind of a scientist. I took my words
from what they said in their letters, and actually
Patricia Hewitt had also said the same thing.
|
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 said , "Wel l,
I could send you the form", she said "but I really
don't want to put you through filling them in for n o
reason". And then a very dear friend here, who's c ome
to support me, pushed me again to do it again. So
I have actually got the forms at home but I can't s ee
the point of bothering any doctor to fill them in
because they've still got the same dates on them.
|
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.
ANSWER:
The work capability assessments, about five or si x
years ago I think I had the first one and there wer e
five false alarms before I finally got one.
The first time I went -- it's a 50 mile round
trip -- I went with a friend, I was so nervous, and we
waited for about half-an-hour and then they told us
that the computers were down and sent us away. The re
were five more attempts before I finally got one, b y
which time I'd asked for it to be recorded.
Then I was found fit for work. Then I had to
appeal that. Then, after a mandatory reconsiderati on,
9
they put me back in the support group where they
should have put me in the first place and then, as
they sent me the letter that I was back in the supp ort
group, so there was another bundle of forms to star t
the whole process again because apparently they'd l ost
my files. So they wanted me to start all over agai n.
It's so, so, stressful. I have one of these
every three years. The last one, I took a friend w ith
me. It will be nearly three years -- it's coming u p
soon -- and we waited about 40 minutes, I think, an d
we went in and it was completely different, actuall y.
It was a nurse and she said, "I'm so, so sorry that
you've had to wait so long". She said, "I wanted t o
read all your notes and your letters". I'd sent fi ve
or six supporting letters from my family and I'd
written a document describing my life and my histor y,
a potted history. She said, "I wanted to read
everything". She said, "I can see that life is
really, really difficult for you" at which point
I just burst into tears because I'd been heard.
She was brilliant. She, of course, put me in
the support group and she finished the interview
early. She was a gem amongst many who are not as
compassionate.
|
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 that have led
you to form that view?
ANSWER:
I had a doctor when my son was about seven years old,
he was feeling quite unwell and quite tired all of the
time, and so I took him in to my GP who had known m e
since the cancer, known me all the way through, and
said, "Do you think he could maybe test him for
hep c?" He looked at me and he said, "What makes y ou
think he might have hep c?" He was my family docto r.
The same doctor, many years later with the work
capability test, I asked him to write a letter for me
to help me with the work capability test. He looke d
at me and said, "Well, I think you could work".
I repeatedly went to doctors and said, "I'm so,
so tired. Please can you run some tests. I don't
know what to do". "Oh, the hep c won't be making y ou
tired".
The people who heard was the hepatologist. He
always backed me and heard because he understood
hep c. But the GPs, they just have no understandin g.
The one I had when I was going through the Epclusa 1
trial, he was kind of interested but not engaged.
He'd listen to me rattling on a bit about being on the
trial but he wasn't really -- he wasn't engaged.
Then the one I've got now, even though he's
a much younger one so he will have trained more
recently, he's very eager to learn but he didn't kn ow
what a fibroscan was. That's the one that I went t o
see to ask for a fibroscan and had to explain what it
was.
So they're still not being taught in medical
school what to look for or -- and they're not testi ng
people and that's my big, big, big mission is to ge t
more education and awareness and get people tested.
Now that we know that there's a finger prick test
called OraQuick that's available for £12.
|
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 12-week cure now. If every
person is tested, then we'll find the missing
thousands and we can eliminate hep c. They're talk ing
about eliminating hep c here by 2025. They're not 2
going to do that unless they test everybody and fin d
everybody. They can do it. It's cheap.
|
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 hospital
treatments who still haven't told their family. Th e
stigma needs to be resolved and that will only come
with more education.
More education for the prevention of
transmission so that hep c doesn't get -- slip thro ugh
the net like it did for me somehow, somewhere, not
through deliberate negligence maybe but somehow it got
through. So I want more awareness and I want, yes,
the third thing was everybody, every single person,
tested and then treated.
I was speaking to Rachel this morning from the
Hep C Trust and she said they've had a huge increas e
in calls from people infected post 1991. So I want
more awareness around the cut-off date of September
'91 because it's still going on. It's still slippi ng
through.
3
I want inclusion for all affected. It's taken
me a couple of days here to realise why I've been
feeling a little bit, like, outside of the group
because of my dates and a little bit, oh, I don't k now
if I should really be here. And it's just clicked:
it's because Skipton told me I was not worthy. The y
made me feel unworthy. I wasn't worth any kind of
compensation, any kind of financial support. And s o
I'm very angry about that and I want those criteria
changed. So I want inclusion for everybody affecte d.
And that's it really. And I want to say thank
you to my children for being here and my wonderful
friends who have come to support me.
|
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
transfusion support in the form of, in my case, who le
blood and platelets and that also went on for about 12
to 15 months after the bone marrow transplant.
I needed weekly transfusions for about a year
afterwards.
|
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'd required
a couple of blood transfusions since your discharge .
ANSWER:
Yes.
|
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 front of you now,
Kate. So we can see from that in the second paragr aph
it refers to you being on regular blood and platele t
transfusions?
ANSWER:
Yes.
|
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, to
"screening for hepatitis C is in hand"?
ANSWER:
Mm-hm.
|
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
transfusions that were sort of immediate. That ten ds
to come sometimes when you have a lot of blood
transfusions but certainly nothing regarding risk o f
infection or anything like that.
|
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 that I knew that was the case.
|
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 of blood donors."
So that is, as far as you are concerned, the
first time you were told you had hepatitis C?
ANSWER:
Yes, yes.
|
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."
What can you remember as to what you were told?
ANSWER:
I actually remember very little. I do remember t here
was a discussion of sorts and I think I was told th at
I shouldn't share my toothbrush with anybody. I ca n't
remember if any risks of sexual transmission were
discussed or not. They may well have been, but the
actual implications medically of having hepatitis C
either weren't discussed or I don't recall them
because certainly I don't recall there being any
impact at that time and it was a bit like I knew I' d
picked up cytomegalovirus from transfusions and it was
kind of nothing. Who cares if you are CMV positive or
negative, sort of thing.
I think at the time I had no reason to think it
was anything different from that. It was just, "Oh ,
well, you've got this, by the way".
I don't think -- the doctor was subsequently
criticised actually but, I have to say, I don't thi nk
there was any fault. I think it was just he was
apparently going to refer me to a gastroenterologis t
who would have discussed things further but, no, my
understanding at the time was very limited.
|
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 know that I was expecting a lett er
so I probably didn't follow it up from my end, and
I was not required any further follow up at that ti me
by the haematologists who I had been under for
treatment.
So life just went back to normal. I didn't have
to -- it wasn't until a few years later that I thin k
I said to my GP once, "Oh, I was once diagnosed wit h
hepatitis C, does that need following up or anythin g?"
And that was quite a number of years later.
|
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's mistake and the
diagnosis was made the 1997 as we've just seen.
ANSWER:
Yes and there were several other letters that say 1997
so I think this was probably just a mistype or
something.
|
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 C treatment. She has clearly looked into
this. I have encouraged her to do as much reading
into this as possible."
Is that your handwriting on the side?
ANSWER:
It is, yes.
|
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 that you were being tested for
HIV?
ANSWER:
No, I don't think I was.
|
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 think it was
made worse during that period. But I was able to k eep
on working so, you know, I wasn't laid low by it.
Unfortunately, the treatment didn't work and I was 0
told that that was not so uncommon with my genotype ,
that it didn't always work. So that was it, pretty
much.
|
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, tired, than I would expect at my age and so o n.
You know, you don't know what to compare to.
I would say fatigue was really the main thing.
I haven't had any jaundice or any other sort of ove rt
symptoms from the liver damage that I can actually
point a finger to and say that's definitely the
hepatitis, so yes.
|
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 lf
and being a survivor of bone marrow transplants and
that sort of thing tends to make you feel, well, go sh,
you know, that's -- you know, you've got through th at
sort of thing.
However, over the time since becoming infected
and as the years have gone by, I have suffered more
and more from depression, really quite badly at tim es,
and I have been told by the liver specialist that
depression is something which is quite often linked
with hepatitis C, so I'm guessing that that's proba bly
the main cause insofar as anybody can tell, yes.
|
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 about seven years and so on and that was my
situation in mid-2012 when the depression reached
a point where I really felt that I couldn't just ke ep
going or, you know, envisage another several decade s
of feeling the way I felt and I was also, although I'm
not married and I don't have a family, I've got ver y
good friends and I realise that the impact of my
depression on them was really not good at all,
including my business partner, and you kind of feel
like you want to release those around you from havi ng
to worry about you.
But I felt I couldn't do it, couldn't do the
deed, while I still was running the business with m y
friend because I didn't want to leave that
responsibility on her, so I waited until we'd sold the
business and, you know, sort of really planned it o ut
and I actually made an attempt on my life when we'd
sold the business in February 2013.
|
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
think, "Oh no, I haven't taken enough. I'm going t o
end up with irreversible brain damage. That's goin g
to be even worse for everybody around me", and
I called an ambulance. I didn't consciously change my
mind but who knows subconsciously maybe I did, I'm not
sure.
But actually when the attempt didn't succeed, it
was a bit of a turnaround point because I thought,
"Well, I'm not going to try again, I'm living, I'm
still alive, and I've just got to go on and find th e
best way of doing that that I can and put things in to
place that will, you know, make life better or ..."
yeah.
|
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
because once they done the blood tests they realise d
I'd taken an awful lot more than they thought I had at
first. Unfortunately -- well, fortunately I'd chos en 5
a form of insulin that was longer-acting and it had
taken a while to act and although the hospital didn 't
offer me any mental health support, this very nice
police officer took it upon himself to refer me to the
mental health services and I saw somebody fairly
quickly. It was three and a half years before
I finally got to see a councillor on the NHS but
that's another story.
But, yes, so after about three and a half years
I got to have some therapy for a few months.
|
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 know whether it was of help or not. I was
grateful to receive it because some people don't ge t
that far but, yeah, I'm not sure.
|
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 shop for nearly eight
years, I've spent most of my working life as a medi cal
secretary, having originally trained as a doctor ma ny
years in my youth but not practised medicine, and
I began to struggle a lot with concentration and th at
kind of thing.
Because I was struggling to deal with people,
and an opportunity came up for me to work from home ,
I opted for that and I probably not very healthily
sort of withdrew a bit into my shell and I could wo rk
from home and not have to deal so much with other
people, I guess.
But I started working for an Australian company
downloading medical dictations and typing them or
proofreading them and I was actually fired from one of
those jobs just about three years ago now because o f
7
lack of concentration. I sent a couple of the lett ers
back to the wrong client; so obviously that's got d ata
protection implications and was quite a serious thi ng
to do.
Most of my working life I've been really highly
thought of and, in fact, even sought after. You kn ow,
once I've left a job the employers have contacted m e
and said, "Oh, could you possibly come back and hel p
out", so that's quite humiliating really to come to
a point where my work has reached a thing where I h ave
to be fired and that's really due to concentration
issues, motivation working from home.
|
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 doing some work from
home but financially obviously there are implicatio ns
as well and although I have an income from The Skip ton
Fund which I'm very grateful for and it covers my 8
mortgage payments, it's not enough to cover bills a nd
food and, you know, all the normal things that we
need. And, of course, because of having had
hepatitis C I can't get any kind of insurance,
certainly not indemnity to cover my mortgage or any
kind of sickness insurance should I have to stop
working or take too much time off work sick.
So for the future that's a difficult thing as
well, to work out how to kind of make way financial ly.
|
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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