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1,000 | 10 | QUESTION:
You've described in your statement that after you
received your diagnosis you were neither here nor
there and you became overwhelmingly paranoid that i n
your line of work you may have infected all the
patients you had ever cared for?
ANSWER:
I did. When you're working a job where your whol e
life is saving people's lives and suddenly you thin k
you may have harmed somebody, it just becomes a ver y,
very difficult thing to cope with. So you start
reliving every job that you've ever done where you may
well have hurt somebody instead of helped somebody,
and I spent then months doing that, picking apart
every emergency call that I could remember where
somebody had been bleeding or that I could have hur t
somebody.
Of course, in effect, I'm a stickler for rules
so when I'm not paranoid I do realise that the chan ces
I ever hurt anybody were so remote, so remote, in f act
I can't remember a situation where I could have cau sed
harm to anybody. But in my paranoid state, I had t o
unravel every single job and I'd been a paramedic f or
25 years, so that's a lot of jobs.
|
1,001 | 10 | QUESTION:
You said:
"In actuality I had probably never infected 1
anyone. I never had cuts of my own during work and
I always use personal protective equipment when
necessary whilst at work."
ANSWER:
Absolutely.
|
1,002 | 10 | QUESTION:
That's the rational part of your brain, isn't it?
ANSWER:
Yes, that's the healthy brain speaking.
I worried about my children as well. My
children -- obviously we all lived together in what
was a very happy household and I feared the infecti on
to them as well during the phase where I was very
paranoid. I boil-washed everything -- not the
children, I'm pleased to say -- but I did have the
washing machine on at 60 degrees constantly.
If I used a towel to wipe my mouth after I'd
brushed my teeth I boil-washed it. My husband begg ed
me to stop the boil-washing but it went on for year s.
I'd boil wash everything. We all walked around in
clothes that probably should have been on a Barbie
doll because everything shrunk. And, yeah,
I boil-washed everything. I was so fearful of
infecting my family, who I'd lived with for all the m
years but ...
|
1,003 | 10 | QUESTION:
After occupational health had told you, you then went
to your GP?
ANSWER:
Yes.2
|
1,004 | 10 | QUESTION:
You were referred on to a specialist.
ANSWER:
I was, yes.
|
1,005 | 10 | QUESTION:
It took about eight to 12 weeks, didn't it, befor e you
could see the specialist?
ANSWER:
I think it was longer than that. I think I saw t he
specialist in about May time, I believe, something
like that, a long time, it felt a long time.
|
1,006 | 10 | QUESTION:
When you saw the doctor what did she say?
ANSWER:
My husband came with me to the appointment. We s at in
a clinic alongside people who were terribly poorly and
then we were called in. When we were called in, th e
doctor, Dr Ballinger her name is, she came out and
said would we mind if there was two junior doctors in
the room and would we mind if they stayed in for th e
appointment and I said, "Actually, I do mind".
I said, "I've waited a long time for this appointme nt.
I'm feeling very emotional", so would she mind if t hey
weren't in for the appointment.
She became a little agitated at that and then my
husband and I went in for the appointment and she t ook
us through hepatitis C, what hepatitis C was, the f act
that I hadn't yet got a genotype but she said if I was
genotype 2 or 3 she would refer me for treatment wh ere
I would have an 85 per cent chance of clearing
hepatitis. If I was a genotype 1 or 4, then there was
3
no treatment available to me and depending on what
stage my liver cirrhosis was, she said that I would
typically deteriorate by one stage every five years .
So if, for instance, your liver came back at
a stage 3, that would give you ten years to live an d
my children, my triplets at the time, were ten year s
old and she said that I wasn't to be too concerned
because they could treat the symptoms and that they
would support me with palliative care.
|
1,007 | 10 | QUESTION:
How did you feel when you heard all of that?
ANSWER:
Terrified, terrified that I was going to die, tha t
I wasn't going to see me grandchildren, my children .
You know, ten years didn't seem very long when you
think that my triplets were only ten years old. So ,
you know, they would make 20 but I was also very aw are
because I have limited medical training, but some
medical training, that the last five years of that
were going to be in late stage liver disease which
wasn't going to be terribly easy and wasn't going t o
make a particularly wonderful mummy, so it was very
scary. My husband was very, very scared as well.
|
1,008 | 10 | QUESTION:
You couldn't have the liver biopsy straight away?
ANSWER:
No.
|
1,009 | 10 | QUESTION:
Because they were concerned about the bleeding ri sk
from von Willebrand's?4
ANSWER:
Yes.
|
1,010 | 10 | QUESTION:
That von Willebrand's was reassessed and what was the
outcome?
ANSWER:
So I was sent back to the haemophilia centre that
I had spent half my life in along with my sister, w e'd
run around the corridors and misbehaved for years a t
this haemophilia centre. Anyway, I went back there .
They were going to re-screen me and work out whatev er
the doctor needed to know in order for me to carry on,
have the liver biopsy so as I could maybe have
treatment if I was the right genotype.
So I went to the haemophilia centre and they
took more blood tests. I came away went back a few
weeks later to get the results, went back by myself
and they called me into the room for the results an d
when I went in to the room, I thought something was n't
quite right because they introduced me to the
consultant haematologist, the nurse specialist,
another nurse, and there was the human resource
officer there, and there was another person taking
notes, so there was a whole panel of people.
I thought, well, that's very strange to get
a blood test result, so I sat down and they announc ed
to me that I haven't got von Willebrand's disease a nd
that I never had von Willebrand's disease, so I'd b een 5
infected with hepatitis C for no reason, basically.
They also went on to say -- I said, well, that
can't be right because I've had it all my life and my
sister's got it too and you can't grow out of
von Willebrand's disease and they said, well,
sometimes you can if you've only got a small assay
level, you know, like an 8 or a 9 or something like
that and I said, well, I've got a 25 and I've got
a letter to prove it, and they just went very quiet
and didn't say much more really except to reassure me
yet again you haven't got it, "go ahead with your
liver biopsy and what have you because you don't ha ve
von Willebrand's disease".
|
1,011 | 10 | QUESTION:
So you went ahead with the liver biopsy?
ANSWER:
Yes.
|
1,012 | 10 | QUESTION:
You were then -- what happened then with the trea tment
in relation to the hepatitis?
ANSWER:
I had the liver biopsy and I didn't have the resu lts.
The liver biopsy was fairly traumatic but luckily
enough they let my husband come in with me.
The reason it was traumatic was that everywhere
we went, everywhere I went, I felt like I was treat ed
differently because I had hepatitis C. I had
undergone a couple of procedures at the hospital.
Even having a blood test sometimes was traumatic du e 6
to the amount of gloves that people managed to get on
their hands in one go and the masks that they wore.
There was some very traumatic hospital visits.
So I was very, very worried about the liver
biopsy and so my husband came with me and I was tha t
upset by the whole thing that they actually allowed
him to come in the room and stay with me for the wh ole
of the procedure to keep me reasonably calm.
I'm not scared of procedures. It was just the
trauma around the whole hepatitis C and the way tha t
people treated me. As it happened, the team that d id
the biopsy were absolutely lovely so I had nothing to
worry about. They did the biopsy and I didn't have
the results but I did get a letter through the post to
say that they had cancelled my next appointment
Dr Ballinger because, unfortunately, my genotype ha d
come back a 1B, which meant that it was untreatable ,
so we weren't going to go down the treatment route , we
were going to go down the palliative care route.
|
1,013 | 10 | QUESTION:
All your appointments going forwards with
Dr Ballinger, as far as you were aware, had been
cancelled?
ANSWER:
Had been cancelled. She did send me a letter, th e
hospital sent me a letter accidentally to say that
I hadn't turned up for one of my appointments but
7
I had already got a letter that said that that
appointment had been cancelled.
|
1,014 | 10 | QUESTION:
When you were told, though, or your understanding was
those appointments had been cancelled, what did tha t
make you feel?
ANSWER:
The same as I felt when she told me I only had te n
years to live, that I did only have ten years to li ve.
It was now confirmed because my genotype was the wr ong
genotype to be treated and that there was no treatm ent
available to me.
By this time my personal life was unravelling,
completely unravelling. I was quite often within o ur
marriage the higher wage earner so we now were unab le
to pay our mortgage, et cetera, so our lives were
definitely -- we were struggling in every sense.
The triplets, we still had a mouths to feed, we
still had lots of children at home and it was all
becoming very, very difficult and now we were in th is
palliative care phase as well, so it was a very, ve ry
hard time.
|
1,015 | 10 | QUESTION:
You have described it as a situation that was
destroying you as a family and making you feel very
mentally unwell.
ANSWER:
Yes, it was definitely that. The family was -- w ell,
the family unit had kind of -- my husband was worki ng 8
extra shifts, of course, now because he was trying to
help us pay the mortgage.
I came up with some hair-brained idea to move in
four or five students at a time to try to pay the
mortgage but I couldn't then care for them because
I wasn't really mentally well enough, so he was now
trying to care for them as well. So, yeah, it was all
really -- it was such a difficult time and I was
keeping the whole thing a secret still from everybo dy
except for two people.
|
1,016 | 10 | QUESTION:
A couple of months later a chance encounter that your
husband had meant that you became aware that treatm ent
was available at Paddington Hospital?
ANSWER:
Yes.
|
1,017 | 10 | QUESTION:
So you asked to be referred there.
ANSWER:
Yes.
|
1,018 | 10 | QUESTION:
You joined a drugs trial in which you received
interferon, ribavirin and telaprevir for six months ?
ANSWER:
I did, I did.
|
1,019 | 10 | QUESTION:
There was some delay before you could start that
treatment. What was that?
ANSWER:
My husband had had the chance encounter where he had
found out about the fact that there was possibly
treatment available. He had come to me and said
there's treatment available. It was so difficult. 9
I was so convinced that there wasn't any treatment
available he had to really persuade me to give
treatment a go, that there was possibly a way that we
could overcome this.
So eventually we got the GP to refer me to
Paddington Hospital and once we arrived at Paddingt on
Hospital it was a whole different ballgame. It was
positive, people were lovely, people were lovely to
us, it was a completely different environment to be
in, so the chance encounter, the guardian angel tha t
saved my life, had referred us to exactly the right
place. The delay was financial. We had to try to get
funding from one hospital trust to another hospital
trust so as I could receive treatment.
Also, there was no results on my liver biopsy so
they couldn't get the results on the liver biopsy
because the original hospital were just unable to h elp
in every sense of the word and I -- you know, liver
biopsy is quite invasive. It's not the sort of
procedure you want to repeat for the sake of it.
Luckily enough I had a very, very persistent
consultant and he literally sat on the phone for ho urs
until eventually he got it and we sat at the hospit al,
me and my friend sat at the hospital just waiting
until 6 o'clock at night when he eventually did get0
all the results he needed.
Then there was a nurse who reassured me that she
had got funding out of all sorts of different hospi tal
trusts and there was no way this one was going to b eat
her and that she would get me the funding and sure
enough eventually she did.
|
1,020 | 10 | QUESTION:
But for you time was of the essence. Can you exp lain
what was particularly concerning you about the spee d
of treatment here?
ANSWER:
Well, apart from the fact that I was already in s tage
3 liver disease and, of course, deteriorating all t he
time I had a live virus, so apart from that, also i n
order to keep my professional qualification, I had to
try to beat the virus and be back at work within tw o
years because otherwise I wouldn't have been
practising my skills and it means that you can lose
your registration and then you would have to requal ify
from the start again and I wanted to go back to wor k.
I wanted to go back to all the things that I'd
done before and if I was going to not be a paramedi c
it was because I wanted to make the decision that I
was not going to be, so I'd got my fight back at th is
point.
|
1,021 | 10 | QUESTION:
You were determined to get through the treatment in
time so you didn't lose your registration?
1
ANSWER:
Yes.
|
1,022 | 10 | QUESTION:
And so was Dr Darr, the consultant at Paddington, they
knew of the urgency and reassured you that the
treatment would be completed on time?
ANSWER:
Yes, and it was.
|
1,023 | 10 | QUESTION:
Can you tell us a little bit about the physical s ide
effects of the treatment that you underwent.
ANSWER:
Yes. The treatment, as we've heard over and over
again from the brave people that have sat in this
chair, the treatment is very difficult. The
treatment, it causes you to feel very, very poorly,
digestive-wise, it caused me to be very, very poorl y.
I had terrible skin, itchy skin, and I was paranoid .
The paranoia, one of the drugs that I was
treated with is well known for causing paranoia and
I had this awful paranoia that went on for so long.
It was awful. It's such an awful thing to have to
have hepatitis C when you're paranoid because
everybody treats you so badly anyway and then you'r e
paranoid as well.
When I was travelling up for my treatment I used
to have these fears all the time that people would get
poorly around me and I wouldn't be able to help the m
because I had hepatitis C and so I couldn't treat t hem
because I couldn't do procedures and now bearing in2
mind I'm not working for the Ambulance Service at t his
particular time, I was just sitting on a train goin g
for treatment and on one occasion a man went like t his
on his chest (indicated) and I thought he's having
a heart attack so I jumped off the train. Just got
straight off the train and stood on the platform
because I thought, "I can't be there if he's having
a heart attack because I can't help him and if I ca n't
help him and I've got skills to help him then that' s
terrible", so I just got off the train instead.
So going backwards and forwards for treatment
was always very difficult.
|
1,024 | 10 | QUESTION:
Other than going up to London and back for treatm ent,
you coped with it by staying indoors and hiding awa y?
ANSWER:
Yes, I only went out for treatment. I didn't fee l
well enough to be doing anything. I felt paranoid but
that aside I also felt sick all the time. I often got
confused mentally. I didn't -- I sometimes couldn' t
work out where I was supposed to be. I had lots of
physical illnesses by this time as well. I'd suffe red
with alopecia, so I'd lost half of my hair, which
caused people to look at me anyway and then I was
paranoid as well so, yes, I didn't -- whenever I co uld
stay in I stayed in.
|
1,025 | 10 | QUESTION:
Throughout that time you weren't working? 3
ANSWER:
No.
|
1,026 | 10 | QUESTION:
Your husband was doing extra shifts?
ANSWER:
Yes.
|
1,027 | 10 | QUESTION:
But ultimately you did lose your home?
ANSWER:
Yes.
|
1,028 | 10 | QUESTION:
And you had to move somewhere else?
ANSWER:
Yes. Yes, we fought to hold on as long as we cou ld.
We should have probably gone sooner but hindsight i s
a wonderful thing.
We kept -- we had owned our house for 20 years.
We had a mortgage and young children. We probably
should have paid our house off sooner but I wanted to
have more children and we used our money to have IV F
and have the triplets. So we still had a mortgage on
the house because we were both working, et cetera, but
we did eventually lose the house and we all had to
move which was tough. It was tough on the girls.
I didn't tell the triplets for a long, long time
that I wasn't well and when I did tell them, and my
eldest daughter bore the brunt of it up until then and
when I did tell the girls, bearing in mind they're now
10/11, they were really quite popular girls at scho ol
being triplets as well, they were always, kind of, you
know, up there with the popular girls and I remembe r
sitting there saying to them, "Don't tell anybody 4
ever. You're not to tell anybody ever. This is
a secret and you're not to tell anybody", because
I was so worried that the friends that always came to
our house and wouldn't be allowed to come anymore
because people would assume that I was infectious o r
that I had used drugs or was using drugs still or
something. So, yeah.
|
1,029 | 10 | QUESTION:
You put it in your statement like this:
"I feared that the stigma was far too great and
felt they were too young to know but after starting
treatment I had to tell them. I insisted that it w as
a family secret and if they told other people then
their friends wouldn't like them anymore. I though t
if their friends found out then there was
a possibility that their parents would assume that
I am a drug addict and their children would be bann ed
from coming round to my house. Their birthday part ies
and other social gatherings would never be the same ."
ANSWER:
That is exactly what I did, made my 11-year olds go to
school and tell fibs all the time.
|
1,030 | 10 | QUESTION:
You successfully cleared the virus?
ANSWER:
I did.
|
1,031 | 10 | QUESTION:
How do you feel now? Health-wise?
ANSWER:
I am still poorly on and off. Since taking the
medication I'm left with stomach ulcer. I suffer
5
constantly with oesophagitis. My hair's grown back ,
as you can see. I have got hair back. I still
obviously have a thyroid problem. I suffer with al l
sorts of -- I still have more anxiety than I ever h ad
beforehand. There's lots and lots of different lit tle
medical issues that you can't get better from
hypothyroidism anyway. That causes in itself lots of
other things. It's just -- but pleased to have
recovered and not be on my ten years. I'd be at th e
end of it by now. I'd be on borrowed time I think by
now.
|
1,032 | 10 | QUESTION:
In terms of your work -- Paul, could we have docu ment
2933007 up, please -- this was a letter to your GP and
if we look particularly at the second paragraph you
were told or your GP was told and you were told
specifically:
"There should be no reason why she should not
return to work as she is cured of hepatitis C. We
would be very happy to speak to the occupational
health department at her place of employment should
they have any doubt."
So you had a letter and you had other letters as
well that expressly said you were safe to return to
work?
ANSWER:
Yes, absolutely.6
|
1,033 | 10 | QUESTION:
But what happened in relation to your work after that?
ANSWER:
It was very hard to get back to work. I had seve ral
occupational health meetings because the occupation al
health team were under the impression that you
couldn't get better from hepatitis C. So it took t he
lovely Dr Darr and his team about four letters to
convince that that I was actually clear of
hepatitis C, that I could go back to work and that
I posed no risk, in fact I probably posed less risk
than any of my colleagues because I was actually
totally clear and some other people are not yet
tested, so ...
|
1,034 | 10 | QUESTION:
In fact, you have noted that in one of the letter s
from Dr Darr he wrote in block capitals:
"SHE POSES NO THREAT TO THE PATIENTS."
ANSWER:
He couldn't believe that they hadn't taken me bac k
after the race against time to get me well. He
couldn't believe that he had to write several times .
|
1,035 | 10 | QUESTION:
While you were unable to work as a paramedic you set
up a play centre business with a friend?
ANSWER:
I did, yes. It was slightly naive of me because
I thought that I could start a new business and hel p
to secure our financial future and make things bett er
bearing in mind my life was unravelling and a littl e
bit of a mess financially at that time, so yes, I d id. 7
|
1,036 | 10 | QUESTION:
After a little while, after you had cleared the v irus,
you and your friend wanted to obtain Ofsted approva l
for the business?
ANSWER:
Yes, we did.
|
1,037 | 10 | QUESTION:
Ofsted being the education regulator, effectively .
ANSWER:
Yes.
|
1,038 | 10 | QUESTION:
Did you face any difficulties with that because o f
your previous hepatitis C?
ANSWER:
Yes. When you apply for Ofsted registration ther e's
two things that you could have that would stop the
registration immediately. One is HIV and the other is
hepatitis C and they made it very plain that had -- if
either of us applying for our Ofsted registration f or
our business had it they wouldn't even consider the
application. My doctor helped me to prove that
I didn't have it and that I had cleared it but, yes ,
it made it very difficult and awkward. My business
partner had to be very tolerant at the time.
|
1,039 | 10 | QUESTION:
It took quite a lot of correspondence for them to
recognise that you had cleared the virus?
ANSWER:
Yes, and that I posed no risk to the business, to
Ofsted or to the children that we'd be looking afte r.
It took a lot of persuading.
|
1,040 | 10 | QUESTION:
You have raised two particular issues that are of
particular concern to you. Firstly, that you shoul d 8
be entitled to a scan every year.
ANSWER:
I do feel that because I had hepatitis C for so l ong,
30 years, before I cleared it, that I worry about m y
health a lot.
My children sometimes I've heard them saying to
each other they don't know whether I'm just miserab le
or whether I'm not well, which is an awful thing to
have heard your own children say because I've alway s
been such a happy mummy and, you know, tried to do my
best.
It would be nice to be able to access healthcare
annually just to make sure, because we're such high
risk of cancer of the liver, et cetera, and having
been so poorly, just the reassurance that everythin g's
fine, the blood tests and a scan, just to say, "All 's
okay. Off you go again".
|
1,041 | 10 | QUESTION:
Secondly, you have asked why your hepatitis C was n't
discovered earlier through the look-back exercise a nd
that's a particular concern to you?
ANSWER:
Absolutely, especially as my family remained in o ur
family home that I grew up in, so the haemophilia
centre that I was registered at was registered at m y
family address and although I obviously moved on my
family didn't so had they written to that address t o
try to locate me, my Mum would have got the letter.
9
So it would have been very, very easy to have trace d
me to routinely test, especially as I was tested fo r
HIV in 1985 I would have been on a register or a li st
somewhere and I should have been tested definitely for
hep c where I could have then spared myself the sta ge
3 liver disease, yes.
|
1,042 | 10 | QUESTION:
Were you ever told you were on a list somewhere o r is
that your sort of understanding of what must have
happened?
ANSWER:
It's just my understanding and through some readi ng
I did read that some people were tested for
hepatitis C later on as hepatitis C become more kno wn
but I was never contacted.
|
1,043 | 10 | QUESTION:
So you would have expected to be part of the look -back
study?
ANSWER:
Yes, I would have expected to have been.
|
1,044 | 10 | QUESTION:
Those are the questions I have for you. Is there
anything else you would like to add?
ANSWER:
I don't think so.
|
1,045 | 10 | QUESTION:
I am just going to turn my back and ask Mr Snowde n who
as you know represents you if there's anything
further?
ANSWER:
Yes. (Pause)
|
1,046 | 11 | QUESTION:
Thank you, Joan. Joan, you, trained
originally to be a secondary school teacher, didn't
you?
ANSWER:
I did, yes.
|
1,047 | 11 | QUESTION:
Then in about 1987 you became a youth worker and then
a centre manager?
ANSWER:
Yes.
|
1,048 | 11 | QUESTION:
And in 1989 you started a mountain leadership cou rse?
ANSWER:
I did.
|
1,049 | 11 | QUESTION:
And became part of the Outward Bound team?
ANSWER:
Yes. My original degree was a geography degree.
I joined the Somerset youth team and landed up with
a gruff phone call from somebody saying , "I assume you
can read maps. Do you like the outdoors", and that 's
how that bit started.
|
1,050 | 11 | QUESTION:
Can you describe for us your level of fitness at that
point in your life?
ANSWER:
As the only female member of the team, I'd been
recruited because we get girls interested in joinin g
the Outward Bound but they needed a female member,
I was able to, and did, maintain the same effort, w ork
ethic and hours as any of the men. That includes
climbing, kit, carrying kit, and working 24/7 with
young people because that's what you do when you're
outdoors.
|
1,051 | 11 | QUESTION:
When you were outdoors what kind of activities we re
you leading?
ANSWER:
It was a mix but the whole point really was for y oung
people sometimes for the first time to get a chance to
experience the outdoors. So we worked at their lev el.
Sometimes for them it was the first time they had
walked the countryside, some were on their way to
becoming quite advanced climbers. Once or twice we
included water aspects, you know river swimming and
things, so you name it we tried it.
|
1,052 | 11 | QUESTION:
Then all of that changed in December 1990.
ANSWER:
Yes.
|
1,053 | 11 | QUESTION:
When you were admitted to hospital with ulcerativ e
colitis.
ANSWER:
1991.
|
1,054 | 11 | QUESTION:
I understand that in January 1991 you underwent
surgery?
ANSWER:
Yes.
|
1,055 | 11 | QUESTION:
Because the steroids weren't able to get on top o f the
colitis?
ANSWER:
Yes, we'd come back from a field trip that summer in
the Dolomites and from one camp site we'd all lande d
up with a tummy infection and just, basically, it
didn't settle over the winter and my GP at the time
did wonder if it was ulcerative colitis but I had h ad
no history of any medical problems up until then.
|
1,056 | 11 | QUESTION:
So you underwent a colectomy, removal of your col on?
ANSWER:
Yes. The steroids didn't settle the bleeding. W e had
Christmas as a holiday and I was meant to rest. Th e
bleeding got to the point where basically an ambula nce
had to turn up after Christmas and take me into
hospital. I was on a medical ward and I forget the
dates to be honest but a long time and they upped t he
steroids and were waiting for things to settle.
In the end it became apparent, I think it was
after a good month, that it wasn't going to work an d
I was transferred to the surgical ward under
Mr Collins, who was excellent, but by then my colon
was so damaged it had to be totally removed.
|
1,057 | 11 | QUESTION:
During that surgery, you received substantial
quantities of whole blood?
ANSWER:
Yes.
|
1,058 | 11 | QUESTION:
Prior to the surgery, were you made aware of any risks
involved in receiving a blood transfusion?
ANSWER:
No.
|
1,059 | 11 | QUESTION:
Was there any discussion after the surgery of any
possible risks of infection?
ANSWER:
No.
|
1,060 | 11 | QUESTION:
You say in your witness statement that you:
"... now understand that by the time I had my
blood transfusion there was a screening test for bl ood
but it wasn't being used. There was a risk of
infection and I wasn't informed. I believe that th e
risks of the blood transfusion should have been
discussed with me at the point that major surgery w as
being considered. My understanding is that there w ere
safe products that could have been used during surg ery
instead of giving me a blood transfusion but these
would have cost the NHS more money."
ANSWER:
Yes, absolutely.
|
1,061 | 11 | QUESTION:
Is that still your understanding?
ANSWER:
Yes. Actually, I just for the first time saw my
medical notes about a week ago and I realise I also
had transfusions before surgery because I was so we ak.
They had to build me up so I actually had transfusi ons
on several occasions.
|
1,062 | 11 | QUESTION:
You were then unable to work for about two years after
that surgery.
ANSWER:
Yes.
|
1,063 | 11 | QUESTION:
You had some difficulties with the child support
agency and you were campaigning against them in
relation to some payments that you didn't want your
husband, your ex-husband, to make to --
ANSWER:
Yes.
|
1,064 | 11 | QUESTION:
By 1994 though you had managed to return to full- time
work; is that right?
ANSWER:
Yes.
|
1,065 | 11 | QUESTION:
You managed that for a little bit of time but the n
your health deteriorated again.
ANSWER:
It was a full-on job, managing a large youth cent re
that had had quite a few problems. So some of my
working days started at 9 and finished at 12 -- not
often but that was the process that if you were
supporting an evening session when the youth club w as
open by the time I had driven home it was really la te.
So you're operating on lots of levels. There
was the physical demand, there was the sort of
intellectual planning, meeting with committees,
meeting with politicians, looking for funding.
|
1,066 | 11 | QUESTION:
What were your symptoms at that point just before
1995?
ANSWER:
I think in many ways it will sound daft but I fel t
quite lucky with retrospect that I had gone to
a homeopath because I was paying more attention tha n
most people would because I had been extremely fit and
used to working through keep fit programmes, I thin k
I was more aware than most people would be, and
I became aware that if I pushed it, if I got tired,
flu-like symptoms would be generated with no sense of
having caught a cold. The sort of wanting to rest up
at the weekend, normally if I had a nice weekend of f
I'd bounce back and be ready for Monday and that ol d
familiar pattern just wasn't happening.
|
1,067 | 11 | QUESTION:
You've described it as:
"... having general flu-like symptoms, aches and
pains and fatigue. There is tired and then there i s
ill tired. Sleep wouldn't cure it. My lymph gland s
in my neck and armpits would flare up if I pushed
myself too hard. My body seemed to overreact to
coughs and colds and my glands would swell for no
apparent reason when I was tired. I had been very
resilient before the blood transfusion."
ANSWER:
Exactly, yes.
|
1,068 | 11 | QUESTION:
Then in June 1995 you received a letter from the
South-west Blood Transfusion Service as part of
a look-back exercise.
ANSWER:
Yes.
|
1,069 | 11 | QUESTION:
Paul, could we have document 0065002, please.
In this letter, if you just go down to the --
thank you -- in this letter you were told that the
transfusion you had received may have been carrying
the hepatitis C virus.
What did you do when you received that letter?
ANSWER:
I'm assuming and I can't find that there was a co ntact
number. I have a memory of having a number to phon e
to make an appointment.
|
1,070 | 11 | QUESTION:
Yes. You say in your statement I think
actually it's two weeks.
ANSWER:
Thank you.
|
1,071 | 11 | QUESTION:
But it felt like a very long couple of weeks that you
were waiting.
ANSWER:
Yes, yes. There's so many layers to this when we 're
talking because I'm trying to remember what it was
then and what I've learnt since. What it was then
felt like a vacuum. There wasn't much information
around. I didn't even know what this thing was.
I wasn't sure what the process now was, other
than that I was making an appointment to go and see
somebody. I didn't even know if that was for a blo od
test. I was just making an appointment.
|
1,072 | 11 | QUESTION:
How did you feel during those two weeks? It was
a vacuum but what was going through your mind?
ANSWER:
The physical thing is just holding your breath. The
mental process is all the what ifs. You know,
I thought I was getting well, what's this? So I th ink
for that very first bit until I had an appointment I'm
literally just physically and mentally holding my
breath.
|
1,073 | 11 | QUESTION:
You have said that you know you had to be alerted to
the possibility of being infected by a letter or
a phone call?
ANSWER:
Yes.
|
1,074 | 11 | QUESTION:
But you think it would have been better if you co uld
have had an appointment much more quickly, perhaps
within 24 hours, than having to wait for two weeks.
ANSWER:
Exactly, because not only did you wait for that
initial appointment, which then did mean I met
actually with a clinician in a white coat, though 0
I can't tell you who it was, and a blood test,
a sample was taken, but then you also have to wait for
the results, so I believe it was about a month went by
before it was actually confirmed that I did have
hep c.
|
1,075 | 11 | QUESTION:
You've said that you attended that appointment tw o
weeks later and what was the attitude of the person
taking your blood?
ANSWER:
My memory is that it was just an appointment. Ve ry
pleasant, very polite. My assumption was that
nothing's confirmed yet, this is just a process tha t,
you know, a retrospective, not quite sure what that
means.
I didn't then realise that if they've bothered
to contact you it basically means you are infected, so
I thought I was still yet to be confirmed.
|
1,076 | 11 | QUESTION:
Then you went back for the results a week or a fe w
weeks later and you were told you had hepatitis C.
Can you tell us how you were told.
ANSWER:
Invited into a room, sat down the other side of
a desk. Again, a doctor saying, you know, terribly
sorry to have to confirm it is hep c, and I've
realised whilst listening over this last week, ther e's
an interesting issue about the word "counsel". I'v e
got my notes back now and I truly believe that the 1
clinician that saw me felt he had counselled me abo ut
it. I would use the word "counsel" as in "informed ".
He informed me about toothbrushes and razors and sa id
it might mean that I will need a liver biopsy and
that ... that was it.
|
1,077 | 11 | QUESTION:
When you left that appointment, having been told you
had hepatitis C, did you understand what the next
steps were going to be for you?
ANSWER:
No. And I can absolutely say that because I reme mber
sitting in the car park for a good half hour just n ot
really trusting myself to drive and the only phrase
going round my head was what now, what's this, what do
I do?
I think -- and again I was pretty careful about
keeping papers and things and I think I did leave w ith
a leaflet in my hand and if I did, then that was wh ere
I heard about the British Liver Foundation, so I do
believe they did do that, but the overpowering feel ing
was just "what now? What now?"
I should add to that at the time I was a single
parent and very conscious I had two teenage daughte rs
and all that goes with that, the mortgage, the job,
the bills to be paid.
|
1,078 | 11 | QUESTION:
We will certainly come to that shortly.
ANSWER:
Thank you.2
|
1,079 | 11 | QUESTION:
You also then went to see your GP.
ANSWER:
Yes.
|
1,080 | 11 | QUESTION:
What was their response? What understanding did they
have of hepatitis C?
ANSWER:
Nothing really is the short answer. The longer a nswer
is met with kindness and concern and, again, if I'm
really honest, that chapter's quite a blur. But I was
left with the impression that we were on cutting-ed ge
medical discovery, that whatever this thing was, th ere
wasn't a lot of information to hand and once I got
through the initial shock of it all, my normal
paternal of survival kicked in and I was just tryin g
to find out, you know, who, what, when do I need to
talk to, thank goodness for the internet, although
that has some drawbacks, and that started a whole
journey.
|
1,081 | 11 | QUESTION:
But in terms of your GP you said he was a kind an d
supportive GP but he was the first to admit that fo r
him this was new ground.
ANSWER:
Yes.
|
1,082 | 11 | QUESTION:
Then, as you say, you did a lot of research yours elf
into the condition helped along by your GP --
ANSWER:
Yes.
|
1,083 | 11 | QUESTION:
-- pointing you towards relevant websites?
ANSWER:
Yes.
3
|
1,084 | 11 | QUESTION:
You were never referred to a hepatologist but wer e
seen by the gastroenterologist who was seeing you, in
any event, in relation to the colectomy at this sta ge?
ANSWER:
Yes. I actually realised that -- it's funny how you
forget these things, until I saw the notes, I was
between two hospitals, in the end Taunton where I w as
originally operated on, Taunton where I eventually had
the treatment, and Yeovil my local hospital.
Within Taunton the consultant I was referred to
turned out to be the same gentleman whose ward I ha d
been on for a long time failing before I had surger y,
so that was tricky.
|
1,085 | 11 | QUESTION:
When you attended those appointments you took a l ot of
questions with you, didn't you?
ANSWER:
I did.
|
1,086 | 11 | QUESTION:
How was that received?
ANSWER:
Not very well. I genuinely think I approached it in
my usual style which is quite open. Both my GP and my
Dad, who at that time was a great support, had
counselled me to keep writing down questions as the y
popped into my head whilst waiting for the
appointment. That turned out to be quite a list an d
I had tried to resolve some of the questions myself
but I went in to, hopefully, discuss my concerns.
|
1,087 | 11 | QUESTION:
What response did you receive when you went in wi th 4
that list of questions?
ANSWER:
Again, in absolute fairness to not only this
particular gentleman but where the whole system was at
the time, I genuinely think they did not have the
answers to a lot of the questions I was asking. Th at
was my impression.
I honestly can't remember what was said but
I did come away feeling that didn't go very well an d
then since have found in my notes his wording --
|
1,088 | 11 | QUESTION:
Which we're going to come to in just a moment but
before we go there can you just tell us some exampl es
of the questions you were asking.
ANSWER:
Okay. Some of it was directly, you know, I've
obviously been carrying this virus now for a period of
time. I'm beginning to get information about its
impact. There was I think at the time this phrase
"slow burner", so to start off with the conversatio n,
it was trying to be reassuring I believe and saying ,
yes, you know, people have lived with this for a lo ng
time and I was lucky to have been told early and I do
believe that's true. But that stuck in my mind.
I was also asking about treatments and I was
also asking about the impact on my children, you kn ow,
should they be tested and -- well, it was a longer
list than that and I can't remember them all. 5
|
1,089 | 11 | QUESTION:
That's okay. But you didn't particularly receive any
answers to any of those questions?
ANSWER:
No. It was admitted that I could get my children
tested, although it most probably wasn't necessary.
|
1,090 | 11 | QUESTION:
Before we come to the letter from one of your tre ating
doctors, I want to look at something first to
understand a little bit more of what your situation
was at the time?
ANSWER:
Yes.
|
1,091 | 11 | QUESTION:
Before we even go there, can you describe how you were
feeling in the sort of years of '95, '96 through to
'98? What symptoms, physical symptoms, were you
facing?
ANSWER:
I work in images so bear with. Some of them are quite
simplistic and I've heard other people use them so
it's universal.
Partly trying to explain to my daughters,
I found the image of a car. I'd got the car polish ed,
it was fit, there was muscle tone but if I put my f oot
on the accelerator there was not the power there th ere
used to be and that is how I was trying to describe
stamina. It's also the flat battery syndrome.
Aches and pains for no reason, noticing joints
were an issue. As I said before, my glands swellin g,
stiff neck, and the other thing, and I just hold on to 6
this and for me it is a very specific thing, as
a people-working person one of the greatest skills,
one of the greatest gifts you can give somebody is to
remember their name.
If you are working with young, disaffected
teenagers who are used to being "Oi you", to be abl e
to go up to them and say, "Hi Chris, how's it going ?
How's the dog", or whatever it is you remember abou t
them, I was losing that facility and I was putting
that down to being tired. I've never really regain ed
that facility in as much as I know that was a real
skill and I have worked at putting that back. I ha ve
to write it down now if I want to really remember
somebody's name.
|
1,092 | 11 | QUESTION:
You were involved in litigation concerning the bl ood
transfusion, subsequently, and some expert reports
were written about you. I wonder if we can look at
one of those now. It is document 0065010. If we
could go down to the third paragraph, which starts at
"As far as her present health ..."
It says there:
"Although she found she wasn't able to recover
her previous levels of stamina, she finds she gets
cyclical symptoms, which essentially the major
component of which is lack of energy and mild gener al
7
malaise. At times these are associated with a rang e
of further flu-like symptoms, failure of body
temperature regulation, some joint pain, dry skin. In
addition to this she suffers from low back pain. T his
is a pain in her lower back and shoulders radiating to
he legs on occasion. It is usually present when sh e
wakes first thing in the morning ..."
Then if we go to the next paragraph:
"She is able to do most things physically but
she is unable to cope with the fairly strenuous
physical exertion she used to do as part and parcel of
her life and career prior to these episodes."
Is that what it was like?
ANSWER:
Yes, yes.
|
1,093 | 11 | QUESTION:
Then if we go over the page to the final paragrap h:
"The fact that her liver is not particularly
inflamed or scarred at the moment may indicate she has
less of a chance of developing chronic liver diseas e
in the future. I think her low back ache are proba bly
not related to hepatitis C. However, it is well kn own
that a large proportion of patients with chronic
hepatitis C virus infection do suffer from quite
profound general malaise and lack of energy. The
cyclical nature of these symptoms in Mrs Taylor and
the fact that she is otherwise a very sensible lady8
who clearly does try to push herself to the best of
her ability would lead me to suspect that these
symptoms are related to her continuing viral
infection."
That view wasn't accepted, as you have alluded
to, by others who were treating you, was it?
ANSWER:
It's really difficult to shuffle the time zones b ut it
did feel that if you were talking to a specialist
versus a nonspecialist there was quite a gap in the
understanding. I think that's fair to say.
|
1,094 | 11 | QUESTION:
You said it wasn't just a gap in understanding, i t was
also a gap in attitude.
ANSWER:
Yes, yes.
|
1,095 | 11 | QUESTION:
Can we look at 0065008, please, and the third
paragraph "She expressed herself ...":
"She expressed herself rather put out that I do
not attach such importance to her non-specific
symptoms as to have reported them to some central
authority responsible for hepatitis C. I have
explained to her that her symptoms are very
non-specific and of low discriminant value, probabl y
occurring in up to 30 per cent of most patients wit h
most diseases attending my clinics."
That's what was written to your GP at the time
unbeknownst to you? 9
ANSWER:
Absolutely.
|
1,096 | 11 | QUESTION:
But I think you have said that was representative of
the attitude that you were facing at this time?
ANSWER:
And it's interesting to see the response to my li st.
That top one:
"She was emotionally a bit more stable, although
still very intense."
That means I came in with a list of questions.
|
1,097 | 11 | QUESTION:
How did it make you feel when you attended those
appointments and were faced with that attitude?
ANSWER:
If I hadn't had a really kind, caring GP I would have
really struggled because at the time the informatio n
on the net wasn't that brilliant either and it was
very easy to get drawn into chat groups that were
being extremely negative. Yeah, thank goodness for my
GP.
|
1,098 | 11 | QUESTION:
Having obtained your records recently, you've als o
found another letter. Could we have up 0065009,
please. This is letter is dated 3 July 19 --
ANSWER:
Do you mind can I -- I hang on to thoughts rather
fragilely and I was going to save it to the end but ,
Sir Brian -- it's going now because it's important.
Let me look at my notes.
Part of the thing that I have continued to
struggle with is the so-called non-specific symptom s. 0
I totally understand that a medical professional
person cannot take action until there is clinical
evidence. What I'm beginning to understand is if
nobody is recording all our non-specific post
treatment, post infection symptoms, there never wil l
be any clinical evidence.
So there's a whole bunch of us out there going
to specialists, going to different departments, try ing
to describe our symptoms over and over again, only to
have, quite rightly, these physicians saying, well, it
isn't whatever their specialty is, I can't help you .
So I personally over the last few years have been t o
rheumatology, I do not have lupus. Thank you.
I didn't think I did.
I was -- yes, rheumatology. I was under
haematology because my platelets spiked very high
after a kidney infection. I was within a fortnight of
taking chemo for a leukaemia-related illness and th en
my platelets dropped of their own accord. It was j ust
my body overreacting to three lots of antibiotics d ue
to the kidney infection.
If there was somebody somewhere, please,
recording and cataloguing the evidence we now have of
possibly -- I will say that, possibly -- permanent
post interferon or post treatment and post infectio n,
1
that would be such a help.
|
1,099 | 11 | QUESTION:
Just to pick that up with you, Joan --
ANSWER:
Sorry to drop it in there but I was scared of los ing
it.
|
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