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200 | 2 | QUESTION:
And the financial impact, and I'll
come back to financial impact in a few minutes,
perhaps, but the financial impact can take
a further toll in terms of insecurity, a risk of
losing the house and the like. That threat of
financial insecurity will no doubt exacerbate
the other social and psychologica... |
201 | 2 | QUESTION:
Could we just put up onscreen, there's
just one passage from your report I want to read
out, if you put it up onscreen, others can
follow it. The report is EXPG0000003, please.
If we go to page 19, please. Henry, it will
probably actually come up as page 20 on yours.
It's 19 on the one before. If ... |
202 | 2 | QUESTION:
You recommended in your report the
possibility of obtaining a health economist's
input.
ANSWER:
Yeah.
|
203 | 2 | QUESTION:
I should say that is a matter on which
Sir Brian invites core participants to make
submissions as to what issues could or should be
addressed by health economists. But could I ask
you from your professional perspective to
identify any particular issues or analyses that
you think a health economist m... |
204 | 2 | QUESTION:
Can I turn, before the break, to two
other aspects of social impact. The first is
the impact upon some of the most intimate
aspects of private and family life. Again,
you've identified in the report gleaned from the
witness testimony that the inquiry has received,
decisions partners are having to t... |
205 | 2 | QUESTION:
Yes, I will come back to complicated
grief, certainly. You've already alluded to it
and touched upon it in your report but all of
these issues you've been discussing can take
their toll on marital relationships,
partnerships in particular, and you've picked up
in your report on some matters that may... |
206 | 2 | QUESTION:
The final question I wanted to ask
before we break for the morning break, is again,
looking at impacts upon family life. Many
statements describe, and you've picked this up
in the report, the limitations upon the ability
of the person who is ill within the family to
participate in ordinary family ac... |
207 | 2 | QUESTION:
Picking up I think on an observation
you made, Dr Thomas, engendering for some
45
individuals a sense of grief for a family life
lost.
ANSWER:
Absolutely. And, you know, seeing
yourself as an incompetent -- I think all of us
like to feel in some ways that we're -- some
roles that we're good a... |
208 | 2 | QUESTION:
One of the most devastating impacts
described to this Inquiry and captured in your
report is the death of a child, and I wanted to
ask a little about that and bereavement and loss
more generally, and to do so first of all by
reference to one of the papers that you've
referred to in your report.
Henr... |
209 | 2 | QUESTION:
And if we just turn to the next page
of this report, the observations you've made,
Professor Weinman, would bear on many of the
accounts that we've heard, not simply about the
death of a child, but about the deaths of
partners as well.
ANSWER:
Absolutely, yes.
|
210 | 2 | QUESTION:
Then there's some specific
observations here about some particular
additional components in relation to the
parental loss of a child. And so I'll just pick
it up in the first paragraph, four lines down:
"At various stages in the life-cycle, men
and women relate to child-conceiving and
child-rearing... |
211 | 2 | QUESTION:
And then it continues:
"Within the bonds formed within the family, 54
the parent-child bond is not only particularly
strong, it is also integral to the identity of
many parents and children."
Then the next paragraph says:
"The parents of children and adolescents who
die are found to suffer a broad r... |
212 | 2 | QUESTION:
One of the other features you've
alighted upon in your report in relation to the
death of a child is in the context of those
parents who were administering blood products to
their haemophiliac children, the additional
component of guilt, the guilt of "I have killed
my child."
In your report, at page... |
213 | 2 | QUESTION:
Thank you.
I'm going to come on to stigma next, but
before I do so I just wanted to ask Ms Edwards 60
just to tell us a little about the Haemophilia
and HIV life history project in which you were
involved.
ANSWER:
So the Haemophilia and HIV life history
project is an oral history project. Maybe... |
214 | 2 | QUESTION:
Yes, please.
ANSWER:
So an oral history project is the
concept that you would record history by
interviewing people who experienced that
history. And often history is written by
bureaucrats, politicians, historians, academics,
but an oral history project would be
a collection of memories, testimo... |
215 | 2 | QUESTION:
Yes. 64
ANSWER:
For example I interviewed somebody who
had never ever spoken to a single person about
his HIV infection. He was infected as a young
man. He actually hadn't told his mother, and he
hadn't told his sister, who he was actually
very, very close to. But he never told them.
The only ... |
216 | 2 | QUESTION:
I think it's right that there are
a handful of the interviews that are not public
in accordance with the wishes of those who gave
the interviews.
ANSWER:
Yes.
|
217 | 2 | QUESTION:
I should also say that the British
Library has provided to the Inquiry all the
materials that it can provide, and they are 66
materials that have been read and listened to by
the Inquiry, and members of the Inquiry team.
ANSWER:
And I believe you have also got the
closed interviews.
|
218 | 2 | QUESTION:
We do, yes.
ANSWER:
Which is very, very, very unusual to
have access to an oral history interview that
has been closed.
|
219 | 2 | QUESTION:
That, I think, leads very naturally to
the next theme I wanted to ask you about, which
is the theme of stigma and discrimination.
In your report, you say this, on page 20:
"The impacts of medical conditions for
individuals and families are profoundly affected
by whether they are imbued by a stigma." ... |
220 | 2 | QUESTION:
One of the consequences of stigma may
be that individuals do not wish to disclose
their condition, and many witnesses reported
that, either contemporaneously or still today.
ANSWER:
(Witness nodded)
|
221 | 2 | QUESTION:
They didn't want to disclose their
condition.
That leads to two further concepts I wanted
to ask you about and perhaps I can do this by
reference to one of the papers in the bundle.
Henry it's EXPG0000006, please.
It's a paper by Beales and others. If you
go to the next page please, sorry the next ... |
222 | 2 | QUESTION:
We certainly heard from witnesses who
have given evidence anonymously because they
still have not disclosed information about their
health to those who know them, and from
witnesses whose close relatives still do not
know that they are, for example, HIV positive.
And they talked to the Inquiry how th... |
223 | 2 | QUESTION:
Dr Thomas?
ANSWER:
Just picking up on that point around
psychological support, and for me coming out of
the documents that I've read was the lack of
support that was offered. People, some people
did get good support, and it was variable across
the country, but another barrier to people
accessing... |
224 | 2 | QUESTION:
We're going to look at a couple of HIV
and then hepatitis C-specific materials in
relation to some of the particular aspects of
stigma associated with those conditions, but
just picking up on what you've said about
Birchgrove, could we have up on screen, please,
Henry, HSOC0005046.
So this a report, ... |
225 | 2 | QUESTION:
In your report at page 20, you've
observed that the campaigns contributed to
widespread public fear, and to the popular
notion that HIV/AIDS could be caught through
normal social interaction.
Now, you've observed in your report from the
83
statements and the evidence that the Inquiry has
heard, nu... |
226 | 2 | QUESTION:
Yes, Professor Morgan?
ANSWER:
I'd say that in some cases we
find that sort of media celebrities can be very
important in actually challenging the stigma.
And if you think about it, the late
Princess Diana actually shaking hands with
somebody with AIDS, I mean that seemed to be
more important to ... |
227 | 2 | QUESTION:
Professor Morgan?
ANSWER:
I think you've not mentioned one
aspect underlying it, which is the blame, and I
think a second aspect is fear, and there is
still fear, and I think this is something that
needs to be addressed because the notion of fear
is sort of amplified and once you fear that HIV
coul... |
228 | 2 | QUESTION:
I think we have one additional member
of the panel to be sworn in.
DAME THERESA MARTEAU (affirmed)
Examination of Panel by MS RICHARDS (continued)
ANSWER:
So we were looking before lunch at the
question of stigma for those suffering from HIV.
Before we leave the topic of stigma I wanted to
look... |
229 | 2 | QUESTION:
So we were looking before lunch at the
question of stigma for those suffering from HIV.
Before we leave the topic of stigma I wanted to
look at one of the materials you've referred to
in your report relating to stigma and
hepatitis C.
Henry, could we have up, please, onscreen
EXPG0000028, please. T... |
230 | 2 | QUESTION:
And it's very much -- for similar
reasons to those you discussed before lunch,
it's that question of seeing certain types of
behaviour associated with it that are seen as
bad by society and then the aspects of fear that
you described earlier.
ANSWER:
Yes, both, as you say, the shame 96
from -- se... |
231 | 2 | QUESTION:
The way you put it in your report was
to say that:
"Hepatitis C is a stigmatised condition and
shares some characteristics of HIV with its
normal route of transmission thorough handling
blood, particularly in the context of illicit
drug use, linking it with publicly acceptable
behaviour."
Then you ... |
232 | 2 | QUESTION:
Witnesses have commented on, and
relayed, and you've picked up on this in the
report, a number of different ways in which they
have experienced stigma, at least felt stigma,
if not enacted stigma, within healthcare 98
settings. And I just wanted to explore a little
the potential consequences of tha... |
233 | 2 | QUESTION:
Specifically within the healthcare
setting, are there any suggestions that you can
make, either now or, if not now, perhaps in the
supplemental report that you're kindly
undertaking to provide, about how stigma within
a healthcare could be addressed? If it was
something you would like to think about... |
234 | 2 | QUESTION:
And then Theresa, you ...
ANSWER:
I was just going to add to what's
already been said, to say that people working in
a healthcare system are part of society, and so
our prejudices will be revealed through the
people working in the health service, so I think
it points to two targets for change. On... |
235 | 2 | QUESTION:
We will in just a moment. Doctor
Thomas, was there something you wanted to say?
ANSWER:
Just to add to what everybody has just
said, that communication training is a really
important way of helping people, but involving
key participants who are, if you like,
hepatitis C sufferers, to be part of t... |
236 | 2 | QUESTION:
And we'll write to you and set that
out. You don't need to try to remember it.
I want to move to the question of
communication which a number of you have alluded
to in your answers already. In the report, you
say this:
"Good quality communication is an essential
element of healthcare practice."
A... |
237 | 2 | QUESTION:
Yes, I'm looking at you.
ANSWER:
Yes, good quality communication is
107
absolutely pivotal to everything that happens
within medicine, because if you are a poor
communicator, you're probably a poor listener as
well, so you don't hear what patients say, you
don't actually ask questions in ways th... |
238 | 2 | QUESTION:
We've obviously heard examples that go
back to the 1970s, through the 1980s, to the
present day, and from what you say, Dame Lesley,
it sounds as though, from your perspective, it
is still very much a present day problem.
ANSWER:
Yes, it is. Although certainly within
most of our medical schools the... |
239 | 2 | QUESTION:
One of the papers you'd referred to,
I won't -- don't need to put it up onscreen but
if anyone wants to know where to find it, it's
EXPG0000016, and it's a paper by Elder 2017, and
it talks about empathy and the importance of
empathy in the clinician-patient relationship.
Again, many of the statement... |
240 | 2 | QUESTION:
What role does that play in modern
medicine and is that something that can be
taught or assisted?
ANSWER:
That's a very interesting question
because there are lots of debates that go on
about whether or not you can actually teach
people to feel, to care, to walk in the same
shoes as the person in... |
241 | 2 | QUESTION:
Dr Thomas?
ANSWER:
Yes. And the flip side of empathy is
compassion, and there's quite a lot of work
being done at the moment within the NHS to try
to instil more compassionate healthcare
professionals, and an important element of that
is enabling people to actually have feedback
about their skil... |
242 | 2 | QUESTION:
Do you know, any of you --
Dame Lesley, you may know the answer to this,
I hope, but any others who may assist -- to what
extent is any of this -- communication skills
training, work on compassion and empathy -- part
of any of the basic medical training that the
medical schools deliver as part of a d... |
243 | 2 | QUESTION:
Dr Thomas?
ANSWER:
We're going to talk about that later on,
I know, about embedding psychological services,
and an important role that psychologists have
when they're part of a medical team, you see the
doctor, you see the nurse, you see the
psychologist, is normalising psychology, but
it's also ab... |
244 | 2 | QUESTION:
I'm going ask about some of the
potential psychosocial consequences of poor
communication in a number of different respects.
Taking, first of all, consent, and I'm not
asking about the legal requirements for informed
consent, but can you just perhaps assist us with
the importance, in psychosocial ter... |
245 | 2 | QUESTION:
Dame Theresa. 118
ANSWER:
If I could just add to that, Lesley
has described how this could erode/undermine
trust. The other thing that consent does is it
provides what we could think of as psychological
preparation for a test result, so some of the
harrowing evidence that people describe that
th... |
246 | 2 | QUESTION:
Then you've addressed in the report
the consequences potentially and the importance
of adequate information and accurate information
being provided. If insufficient information is
provided about whether it's a test result or
a condition or treatment or side effects, is it
fair to assume that patient... |
247 | 2 | QUESTION:
Doctor Thomas, was there something you
want to say?
ANSWER:
Just to say that in addition to what
Professor Fallowfield has said, is really that
if you have got poor information or scant
information, then how -- you're not supported to
go forward to take on board what are very
complex healthcare t... |
248 | 2 | QUESTION:
You've set out very helpfully in your
report good principles or good practice of how
to communicate bad news.
ANSWER:
Yes.
|
249 | 2 | QUESTION:
I'm not going to take time going to
that because we've got it in the report, but
you've also drawn attention to a particular
paper, Bernacki, which we've also got, and some
elements of best practice when discussing a 124
diagnosis of serious illness.
Can I then come on to about candour,
openness, a... |
250 | 2 | QUESTION:
Yes.
ANSWER:
I think that -- moving on from what
John is saying is that also -- that was the
emotional impact but the paper also goes on as
well to discuss the behavioural impact, and the
behavioural impact where somebody feels that
they -- the acknowledgment of error at whatever
level is not bein... |
251 | 2 | QUESTION:
Dame Lesley?
ANSWER:
I was actually going to say something
rather similar. I mean when I did quite a bit
of work with what was then called the National 128
Patient Safety Agency, when we were trying to
encourage more open disclosure -- in fact the
programme ended up being called at the time
Bei... |
252 | 2 | QUESTION:
Just in relation to that guidance
being open, which was 2009 guidance, I should
say it's guidance that relates now to England,
but there is guideline in Wales, Scotland and
Northern Ireland, and we will obtain those and
provide them to core participants. You talked
also about the Australian study an... |
253 | 2 | QUESTION:
Dame Theresa, was there something you
were going to add?
ANSWER:
I was just going to mention that
really in this context, and some of the witness
statements emphasised this, that insult was
added to injury where sometimes people were
encouraged in a hostile way to take blood
products and were fal... |
254 | 2 | QUESTION:
Then can I just ask you a little
about -- apologies -- what they mean, who they
might need to come from, how they might need to
be expressed.
First of all, an acceptance of
responsibility or some kind of comprehensive
apology, if made promptly, is presumably likely
to be of greater benefit than if i... |
255 | 2 | QUESTION:
Your report and your evidence
obviously focuses upon apologies, candour within
the healthcare setting for obvious reasons. But 134
would the basic principles that you describe, of
the importance of there being acceptances of
responsibility, candour about mistakes,
potentially also apply to Governme... |
256 | 2 | QUESTION:
Just one further aspect of candour and
communication, but a slightly different one.
135
Significant numbers of witnesses to the Inquiry
have reported either lost or missing medical
records, incomplete records, destroyed records,
or they've reported difficulties in accessing
records, either their ow... |
257 | 2 | QUESTION:
I'm going to move on to the -- my
penultimate topic is difficulties in accessing
treatment, which I can take shortly, and then
there's a slightly longer topic in relation to
care and support, which is an important one and
we'll need some time. So if I may, I'll just
trespass into the break for two o... |
258 | 2 | QUESTION:
I want to ask you now about the
question of psychological and social care and
support. Starting with psychological support
and counselling.
First of all, do you consider that the
provision of counselling and psychological
support would have been of benefit to patients
infected with hepatitis and HI... |
259 | 2 | QUESTION:
And family support, informal support
networks, through groups such as a number of the
groups that we've heard described, are clearly
very, very important, but they are important in
their own right rather than as a substitute for
psychological and professional assistance?
ANSWER:
Yes, there's a dif... |
260 | 2 | QUESTION:
And in the absence of formal
psychological support, is there a risk that
patients may develop their own coping and
adjustment strategies? And that might include
strategies that are damaging or harmful. We've
had some accounts for example of people turning
to alcohol and drugs [all witnesses nod] as... |
261 | 2 | QUESTION:
Is there still the potential for
benefit for patients to access psychological
support services now, so many years after some
of the initial events?
ANSWER:
Absolutely.
|
262 | 2 | QUESTION:
One issue that has -- or one concern
that's been expressed by a number of people is
about the variability amongst different parts of
the United Kingdom and the different schemes
within the United Kingdom, different elements of
both psychological and social support being
available, and that's engender... |
263 | 2 | QUESTION:
A common theme -- I'm sorry,
Dr Thomas?
ANSWER:
Just that where there are psychologists
within haemophilia or hepatitis C services,
their access is very, very variable as well, so
you may have, say -- I can speak for my
centre -- you know, psychologists providing
three or four days to Haemophilia... |
264 | 2 | QUESTION:
One of the common concerns expressed
by witnesses has been where they've attempted
some form of psychological support -- accessing
some form of psychological support, it's been at
a level of general mental health services, and
they have found themselves having to explain the
history of infection thro... |
265 | 2 | QUESTION:
You've referred in the report to UK
quality standards for haemophilia and for
haemoglobin disorders. Now obviously at the
risk of perhaps stating the obvious, that's only
going to be available for individuals who are
accessing those centres, and because they have
either a bleeding disorder or a haem... |
266 | 2 | QUESTION:
I'm going to have to check. No,
I can't even see it on the transcript. I was
asking, I think, about the -- people having to
go back to the same centre where they had been
infected.
ANSWER:
Yeah, so Haemophilia Centres have
actually then provided kind of outreach work,
and certainly one recommend... |
267 | 2 | QUESTION:
Dame Lesley?
ANSWER:
I wonder if I could slightly disagree
in the sense that it for many people, what has
happened is they've lost trust and if you're
going to re-establish trust you can't actually
do that by sending them somewhere else. And
also some people live, certainly parts of the
devolved... |
268 | 2 | QUESTION:
Professor Christie?
ANSWER:
I suppose I wanted to suggest
something slightly in the middle because I think
I agree absolutely with both positions. As
a psychologist, you don't have to have diabetes
in order to work with a young person with
diabetes. You don't have to have a particular
condition... |
269 | 2 | QUESTION:
Dame Theresa, was there something you
want to add?
ANSWER:
Yes, just to say it's not my area of
expertise so I defer to what I'm hearing here,
but I'd just like to add that I would want to
think about this not just in terms of
psychologists, there are other healthcare
professionals who can provide... |
270 | 2 | QUESTION:
Would you also expect psychological
care and support to be available to affected
individuals, in the sense that the Inquiry has
used that term: family members, partners,
children, et cetera?
ANSWER:
We opened this morning by
stating very, very clearly that nobody lives on
their own with this, tha... |
271 | 2 | QUESTION:
Dame Theresa?
ANSWER:
Just to add: infected; affected; and
a very important point not to lose sight of that
Lesley has already mentioned, the healthcare 162
providers. I think it's absolutely key that any
kind of training that we talk about continues
through in terms of providing support for tho... |
272 | 2 | QUESTION:
A number of those that have given
evidence about bereavement have pointed to an
absence of psychological support for them,
either in the weeks or months preceding death or
in the weeks, months and years after death.
Would that be another important part of any
service offered?
ANSWER:
Yes, and actu... |
273 | 2 | QUESTION:
Can I ask, if an individual is
reluctant to access psychological support -- and
there may be all sorts of reasons, many of which
you'd discussed why that might be the case --
how active should healthcare professionals be in
trying to encourage that individual to access
support services?
ANSWER:
I... |
274 | 2 | QUESTION:
If we just broaden out the discussion
from psychological support to other forms of
support more broadly, social support, what other
kinds of support might alleviate some of the
kinds of psychosocial impacts that you've
identified?
ANSWER:
Decent financial support, yes.
|
275 | 2 | QUESTION:
Dame Theresa, can I ask you now 168
a slightly different topic about the
consequences of vCJD notification. Your report
very properly draws attention to what I think is
the only study that has looked at the
psychological or emotional consequences of being
told about the possibility of exposure to v... |
276 | 2 | QUESTION:
Then going back to questions of
communication, how does what you told us earlier
about good communication inform what should be
the right approach to this situation, where
you're not telling somebody that they have been
diagnosed with a condition; you're telling them
that they may have been exposed t... |
277 | 2 | QUESTION:
Dame Lesley.
ANSWER:
I'm always very interested in
individual differences and how different people
respond in ways that you think, you know: this
is really strange. Why is one person devastated
by the news? Why is another entirely, you know,
sort of cool about it?
And there's a very interesting ... |
278 | 2 | QUESTION:
We have heard from one witness whose
son died in consequence of vCJD. His son's
experience of the care and support that was
available, and your report alludes to the
specialist provision that was made for people
diagnosed with a prion disease, his experience
was very different from the experience tha... |
279 | 2 | QUESTION:
Again this is, as I say, a handful of
questions from various core participants and
their various legal representatives. One is
question for clarification of something
Dame Lesley said when we were talking about
consent earlier, and you used a phrase "tacit
consent", and I wondered if you could expla... |
280 | 2 | QUESTION:
And that reinforces the importance,
perhaps, of two things. One is the provision of
full information by the healthcare clinician as
to what they are doing, or what they are asking
the patient to agree to. And the second is the
importance of written consent, of recording
that.
ANSWER:
Yes, absol... |
281 | 2 | QUESTION:
Then the next question is about care
plans for treatment. What are the benefits, the
psychological benefits, of having an agreed care
plan and of having input into that care plan as
an individual?
ANSWER:
So an important benefit from that is
that the care plan is individualised to that
patient's... |
282 | 2 | QUESTION:
The next question is about
181
psychological impact again. And it's this:
would you expect there to be an additional
adverse psychological impact for someone who has
been infected as a result of treatment that
wasn't for a life-saving event, but may have
been treatment that wasn't essential or e... |
283 | 2 | QUESTION:
Then again we explored yesterday
a number of different psychological and indeed
psychiatric impacts arising from illness and
treatment and so on. Does the risk of those
impacts also include the risk of other harmful
behaviours such as addictions or behavioural
issues?
ANSWER:
We certainly heard ... |
284 | 2 | QUESTION:
Dr Thomas, yes.
ANSWER:
There is this existing literature in
NICE guidance suggesting that people with
physiological long-term health problems, so
chronic health problems that a haemophiliac or
hepatitis C or HIV already have, what we call --
they are twice if not three times more likely to
be ps... |
285 | 2 | QUESTION:
Ms Edwards.
ANSWER:
We mustn't forget as well that the
things that we're dealing with are also
extraordinarily painful, so we're dealing with
haemophilia, which can be very painful, for men,
for women with von Willebrand, we know there are
people with haemophilia who are women as well,
these are ve... |
286 | 2 | QUESTION:
Then moving on to the theme of
communication, some of the evidence we've heard
suggests that people were given their diagnosis
or information about their diagnosis either in
a group setting or in a non-confidential setting
of some other kind, being -- something being
185
called out across a corri... |
287 | 3 | QUESTION:
Caz, in 1992, if I can ask you to think back
to then, you were undergoing treatment for cancer,
Hodgkin's disease, and in the course of that you ha d
three transfusions.
ANSWER:
I had the first transfusion prior to diagnosis,
because I was 24 weeks pregnant and I had
pregnancy-related anaemia, and the... |
288 | 3 | QUESTION:
That was in March 1992?
ANSWER:
That was March 3, I think.
|
289 | 3 | QUESTION:
Then you had two subsequent transfusions in May 1 993
and July 1993?
ANSWER:
Yes, that was after two six-month rounds of chemo .
|
290 | 3 | QUESTION:
I think it's also right that in the course of the
treatment that you underwent for your cancer, you h ad
a range of medical interventions: biopsies you've
referred to, blood tests, Hickman lines, and so on?
ANSWER:
Hickman lines. I had two six-month rounds of che mo;
so there was a Hickman line permanent... |
291 | 3 | QUESTION:
Were you at the time of any of those transfusions
given any information about any risks of infection?
ANSWER:
Not that I remember.
|
292 | 3 | QUESTION:
Now, in 1993, you were diagnosed with hepatitis C .
ANSWER:
Yes.
|
293 | 3 | QUESTION:
I understand around that time you also developed
Jaundice. What can you recall about that?
ANSWER:
I was screened because I had two six-month rounds of
chemotherapy that were not enough. I was then
screened for a bone marrow transplant. Had I never
had to have the bone marrow transplant, I probably ... |
294 | 3 | QUESTION:
At the time you were diagnosed with hepatitis C, you
obviously had a lot else happening in terms of medi cal
treatment. You were about to have what you describ e
in your statement as a high dose of chemotherapy.
Can you remember what, if anything, was your
reaction to being told that you also had hepat... |
295 | 3 | QUESTION:
Can I ask you then to describe how the hepatitis C
began to affect you both physically and mentally?
ANSWER:
It's hard to separate it from the recovery from
a year's chemo and then a bone marrow transplant, b ut
I did start to pick up in the years after the bone
marrow transplant, probably until around ... |
296 | 3 | QUESTION:
Can I ask you a little about the brain fog. You
described it in very vivid terms in your statement and
I wondered if you could give some kind of sense of how
that affected you, how it felt.
ANSWER:
It would be hard to connect the synapses in the b rain.
It would be hard to find words. You'd know what... |
297 | 3 | QUESTION:
What about the fatigue, the chronic fatigue? Aga in,
are you able to give a sense of what that was like?
ANSWER:
The fatigue is so deep and so profound that no am ount
of sleep fixes it. You wake up in the morning feel ing
jet-lagged, feeling as depleted as you did before y ou
went to bed. People will... |
298 | 3 | QUESTION:
I think the way you put it in your statement, Caz , is
the fatigue was not helped by sleep, it wasn't
something you could push through. It was at times
completely incapacitating, couldn't even get out of
bed.
ANSWER:
You couldn't push through it with willpower. I c an
remember coming home from art sc... |
299 | 3 | QUESTION:
As the symptoms progressed, I understand you bega n to
experience a range of other effects of the infectio n,
fibromyalgia, a sense of near permanent flu; is tha t
right?
ANSWER:
I had to stop going to yoga because I'd have musc le
aches afterwards, for days afterwards, if I did
anything strenuous. If... |
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