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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 psychological impacts and
negative effects that the person or family may
already be experiencing.
ANSWER:
Yes, it came through as a major
source of worry and tension, and it's obviously
going to be tensions within the family, and 36
between partners. And this is a very sort of
strong effect.
|
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 you go on to the
next page, please. Thank you. Could you just
highlight, please, Henry, the passage halfway
down the page beginning "The cumulative
effects".
This is what you've said, and I've put it up
on the screen so we can see:
"The cumulative effects of limitations in
employment potential arising from interruptions
in education, together with the continuing
health effects, have undoubtedly had negative
financial consequences for many infected and
affected individuals. Although the extent of
this varied across individuals and families
depending on their prevailing social
circumstances and life stage, the overall costs
have been high. A variety of financial payments
37
were available but they were neither universal
nor considered sufficient. Many witnesses
describe being ground down in their attempts to
obtain financial assistance and then giving up.
For many, this difficulty in both accessing and
receiving financial payments from the trusts and
schemes had a range of negative consequences.
In addition to the effects of continuing
financial hardship, many witnesses report
feeling let down, angry and ultimately helpless.
It is known that frequent unsuccessful attempts
to change an adverse situation typically result
in feelings of helplessness and hopelessness,
both of which are likely to lead to negative
mood and depression."
Is there anything you would want to add on
that issue to what you've recorded powerfully in
the report there?
ANSWER:
These are very well-known
effects from, you know, when people have to --
whatever the situation is, when people are in
adversity, you know, naturally one tries to cope
by gaining control, by doing something. But if
you're constantly thwarted in your attempts to
gain control or to change a situation, this 38
notion of helplessness or what we refer to as
"learnt helplessness", what you learn is
whatever you do, nothing is going to work out.
That you actually have no control.
We've known for many years that can have
a profound effect on people's mood, their
wellbeing, and it's a very potent source of
depression. So, that's really -- I mean,
I think as -- we've said that, but, you know,
these effects are profound across a whole range
of domains in life, yeah.
|
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 might be able to
undertake?
ANSWER:
Yeah.
|
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 take of opting
for lives of celibacy because of the fear of
transmitting infection, and then decisions
families having to take or couples having to
take, women facing decisions about terminations,
being advised to have terminations, couples
deciding not to have children, or not to have
any more children, or couples having to try to
obtain funding and go through processes such as
sperm washing or other risk reduced conception
methods.
Again, I wondered whether any of you have
41
any observations in particular to make upon
those issues and those impacts that you saw.
ANSWER:
Well, they were very, obviously,
central to people, to life, and they caused
considerable emotional upset, which lasted
throughout their lives, really, because it also
had the effects that they wouldn't have
grandchildren and the whole issues. It was in
some cases people had abortions because at the
time of conception they didn't even know that
their partner had HIV, so, you know, they lacked
information, and afterwards, they lacked full
support, really, in coping with this crisis in
their lives.
|
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 have
been strengthened but others that have taken an
irreversible toll on a marriage and marriages
ending, again, is there anything in particular
you would want to add to what's in the report in
relation to those particular issues?
ANSWER:
One of the things I think actually in
this area is that not all relationships anyway
start from a good stable base, and one of the
things certainly you notice in any
life-threatening illnesses is that it can really
be the final straw to already a struggling
relationship. Family dynamics are complicated
anyway. Relationships between partners are
complex as well.
Particularly when you get reversals of roles
and responsibilities as we've been talking about
this morning, that really can, I think, impinge
hugely on an already shaky relationship.
43
I think we saw some evidence of that in some
transcripts.
|
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 activities
whether walking, going on holiday, playing
football with the kids, or caring for their
children in the way in which they would want to
do so.
Is that likely to increase or compound a
person's sense of guilt or helplessness?
ANSWER:
I think that came through very
strongly. People were not able to perform the
sort of parenting role that they wished to.
They were not able to engage in normal family
activities, holidays, and other types of things.
And this I think this was a major concern,
a major concern both in terms of their own
identity and the effects on the children.
|
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 at, a competent mother,
father, whatever, and if you can't manage those
roles, it adds tremendously to the distress that
you're feeling on top of the additional
psychological burden you've got already.
|
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.
Henry, it's EXPG0000011, and it's a paper by
Christ and others called "Bereavement
experiences after the death of a child". I just
wanted to pick up on a couple of passages and
then just ask you about them.
The introduction, if you could highlight the
first ten lines or so, please, Henry:
"The death of a child of any age is
a profound, difficult and painful experience.
While bereavement is stressful whenever it
47
occurs, studies continue to provide evidence
that the greatest stress, and often the most
enduring one, occurs for parents who experience
the death of a child. Individuals and families
have many capabilities and abilities that allow
them to respond to interpersonal loss and to
emerge from the experience changed but not
broken. The few studies that have compared
responses to different types of losses have
found that the loss of a child is followed by
a more intense grief than the death of a spouse
or a parent."
Then over the page, please, under the
heading "Bereavement, mourning, grief and
complicated grief", we can see a number of
concepts there discussed:
"Bereavement described as a broad term
encompassing the entire experience of family
members and friends in the anticipation, death,
and subsequent adjustment to living following
the death of a loved one, widely recognised as
a complex and dynamic process that does not
necessarily proceed in an orderly, linear
fashion."
At the top of the next page, please, Henry, 48
then we have grief described, a term that refers
to the more specific complex set of cognitive
emotional and social difficulties that follow
the death of a loved one:
"Individuals vary enormously in the type of
grief they experience, its intensity, its
duration, and their way of expressing it."
Then we have mourning defined.
"Mourning is often defined as either the
individual's internal process of adaptation to
the loss of a loved one or as the socially
prescribed modes of responding to loss,
including its external expression in behaviours
such as rituals and memorials."
Then we see the concept of complicated
grief, and it says this:
"Complicated grief in adults refers to
bereavement accompanied by symptoms of
separation, distress and trauma."
Then we see a number of what are called
distress symptoms listed:
"Intrusive thoughts about the deceased,
yearning for the deceased, searching for the
deceased, excessive loneliness since the death,
purposelessness about the future, numbness,
49
detachment or absence of emotional
responsiveness, difficulty believing or
acknowledging the death, feeling that life is
empty or meaningless; feeling that part of
oneself has died; shattered world view; assuming
symptoms of harmful behaviours of the deceased
person, excessive irritability, bitterness or
anger related to the death."
Then we see the observation of the impact
upon siblings.
"Siblings of children who die have also been
found to be at greater risk for externalising
and internalising problems when compared to
norms and controls within 2 years of the death."
Now whether or not a person meets the formal
diagnostic criteria for complicated grief, am
I right in thinking that the -- what are termed
the "distress symptoms" there listed may
encompass the kind of response and feelings that
many people will experience when they suffer the
death of a child or a partner or someone else
who they dearly love?
ANSWER:
Yeah, very much so. I think
this paper describes it very clearly. I think
the other -- and we heard lots of witnesses 50
describe exactly these sorts of feelings, both
physical, psychological changes following, you
know, the sense of loss, and grief and so on.
But I think the really telling thing for me
was I went away and looked up, in something
called DSM, which is a sort of official
classification system that's used for
classifying people's psychological mental health
problems, I looked up complicated bereavement
just -- and tried to think of it in relation to
what witnesses had told us. And I just think --
just listen to this, and then think about
relating it to our present context:
"Complicated grief obviously is something
that's much more intense, much more prolonged."
So it doesn't -- you know, grief,
bereavement, is quite variable but this is
something which is much more so. Reasons for
it, the bereaved person has trouble accepting
the death, so clearly issues around a child
dying, yeah. If the individual feels unable to
trust others. Again, we're going to talk more
about trust and about communication. If the
individual harbours an excessive bitterness
and/or anger related to the death. Again,
51
thinking about what we talked about yesterday
and other factors associated with complicated
grief. It's more common with the loss of
a child, as we've said. If the nature of the
cause and circumstances around the death are
complex, or you know sort of beyond the usual,
and if the quality of care, palliative care, the
sort of support you'd normally give to someone
who is in that -- the last days of their life,
if that is not -- if that's poor or not
available, and if there are concurrent
stressors, financial hardships and so on.
If you think about that list of factors and
think about what people have told us in their
statements, it's really not surprising to me
that a lot of people talked about complicated
grief, effectively. Grief that's still with
them now because a lot of these issues are still
there.
What comes out of that is that people
ruminate. These things prey on the mind and
people ruminate about themselves, their anger
maybe they've felt, the guilt that maybe they've
felt, and all of those sort of recriminations,
if you like, that are linked to that death. So 52
I think what we have seen and heard from many
witnesses really does fall into this, what is
a diagnostic category. It's described as a very
clear condition that people can experience.
|
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 roles as central to their
existence."
And I think, Dr Thomas, that bears upon
a point you made before the break about those
who are -- do not have children, and the sense
of bereavement for the future you've described.
ANSWER:
Yes.
|
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 range of
difficult mental and physical symptoms. As with
many losses, depressed feelings are accompanied
by intense feelings of sadness, despair,
helplessness, loneliness, abandonment and a wish
to die."
And of course, again, we've heard that from
people talking both about the deaths of children
and the deaths of partners and other loved ones.
"Parents often experience physical symptoms
such as insomnia or loss of appetite as well as
confusion, inability to concentrate, obsessive
thinking, extreme feelings of vulnerability,
anxiety, panic and hyper-vigilance can also
accompany the sadness and despair."
And then the passage goes on to talk in
particular about anger. Then the next
paragraph, please, Henry:
"Children take on great symbolic importance
in terms of parents' generativity and hope for
55
the future. All parents have hopes and dreams
about their children's futures. When a child
dies, the dreams may die too. This death of
future seems integral to the intensity of many
parents' responses. Three central themes in
parents' experience when a child dies includes:
(1) the loss of sense of personal competence and
power, (2) the also of a part of the self, and
(3) the loss of a valued other person whose
unique characteristics were part of the family
system. While guilt and self-blame are common
in bereavement, they are especially pronounced
following the death of a child. The parent's
role competence as the child's care giver,
protector and mentor is severely threatened by
untimely death."
ANSWER:
What I'd like to comment on is
this is not just an acute reaction. This is not
just something that happens when the child dies.
It's not just something that is around six
months afterwards. These feelings can last for
years and years and years and years, and I've
worked with parents who lost children 30 years
ago who still feel this way. So it's really
important to remember that this doesn't just go 56
away. There's no, you know, neat psychological
theory that we all work through our grief and
bereavement, and suddenly we'll wake up and
we're not feeling that way anymore. Actually,
for many people, it changes subtly, it becomes
less immediate, but it's always there.
|
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 9 -- and again,
perhaps we could have this up on screen, please,
Henry, it's EXPG0000003.
We can see at the top of the page the point
I've just referenced. In the first paragraph,
last sentence, having talked about the guilt
that parents have experienced, you've observed
that:
"Guilt and self-blame are both potent
precursors of depression and both almost
certainly contributed to the considerable levels
of negative mood and depression described in
many witness statements." 58
Then in the next paragraph, if we can just
highlight the next paragraph, please, Henry, it
says this:
"The types of social impacts of HIV and/or
hepatitis C on individuals and families were
similar in many ways to those experienced with
other chronic conditions where partners have to
take on major new responsibilities for the
family and the provision of care. However,
there were aspects of the witnesses' situation
that markedly increased the severity of the
social impacts for both the affected individuals
and family members."
Then you've gone on to identify some of what
you've observed as being particularly acute for
the groups of individuals with which the Inquiry
is concerned.
"These included the relatively young age at
which some individuals contracted these
conditions, leading to particularly severe
financial difficulties and related problems.
There was limited availability of effective
treatments for HIV or hepatitis C infections and
newly researched drugs had many unwanted side
effects."
59
Then you refer to the virus not being
cleared and risks of sexual transmission and
vertical transmission.
Is it also fair to say that when one is
looking at the severity of social impacts for
those with whom we're concerned, stigma,
discrimination, and lack of support, all of
which we're going to come on to shortly, are
likely to have compounded and exacerbated the
ordinarily severe impacts that flow from
long-term chronic illness?
ANSWER:
That's certainly the case. And
I've felt in terms of the social impacts, we can
see that many of the social impacts are similar
for other chronic conditions, but given the
number of conditions that people were coping
with here, as well as the stigma, the impacts
that these groups of people experienced were far
more severe and they're more comprehensive. So
they would experience nearly all those different
types of social impacts that we've been
referring to, and to a high degree.
|
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
I need to explain that a little.
|
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, testimonies, from the
people who experienced that. And certainly, in
2003, a group of us realised -- I, having worked
in the Haemophilia Unit as well as in HIV for a
long time, realised that this story had not been
told. It really hadn't. There was really very
little. And we talked briefly yesterday about
what research we had looked for around the
psychological impacts of HIV, hepatitis C, and
people with haemophilia. This was particularly
the case for haemophilia, and we all agreed
there was very little.
61
This project is not the types of references
we're using here because these are peer-reviewed
journals by academics who have analysed, owned
this work. What we did was we were funded by
the Heritage Lottery to interview people
throughout the country who had -- firstly, who
had haemophilia and HIV. And it was in 2003,
and I don't really believe that we could have
done it earlier than that, because I think all
of the things that we've already been talking
about, the grief, the anger, the confusion, the
lack of certainty about what was happening in
people's lives, I don't think people were in
a position where they would have been very able
to be able to verbalise some of the things that
they were feeling.
By 2003, that became a little easier, and
certainly that's what they told me. And so we
went around the country and we invited people to
talk about their experiences. And we did it in
what's called a life history method, which isn't
about asking questions about HIV and
haemophilia; it's asking questions about
everything, from grandparents to where you live
to where you went to school, who was your 62
girlfriend, what did you play with, you know,
everything. So we have a whole life history.
So some of these interviews on the average were
about 4 hours of recording, and some many more.
Many more.
Those interviews were archived in the
British Library. They don't belong to me or the
team. On the team there was an oral historian,
there was an archivist from the British Library,
there was myself, a counsellor, somebody with
haemophilia and HIV, Rob, who I think you know,
and between us this was the work we did for
those two years. And so those 30 interviews,
very extensive long life history interviews were
archived in the British Library.
What of course we realised very soon while
we were doing this project was that many people
said to us when we asked them about what it was
like finding out that you were HIV positive,
they would say, "We don't know. Ask my mum, you
know, I was two."
And of course the other big area that was
missing was the people who had died. We didn't
have those stories, and they are a huge story
that we were going to be missing out in 2003.
63
And so we did a second project, for the next
two years, between 2005 and 2007, and that
project was called HIV in the Family, and that
project was interviewing the siblings, the
partners, the parents, the mothers, the children
of the people who had died over the previous
years. There were 35 -- 34 of those interviews,
so altogether we collected 64 life history
interviews.
Like I said, they don't belong me, they
don't belong to anybody. They are in the
British Library. They have just gone online and
been digitised. They were on tapes, if people
remember tapes, C90s, and those tapes have been
digitised. There are a number of people in this
room who were interviewed for that project, and
who I've met over the last two days. And those
have gone online and can now be accessed from
your home computer. You can listen to the whole
recording. They are also summarised so that
areas can be found through the, sometimes four,
five, six-hour interviews.
Can I just explain sort of an example of one
of these interviews?
|
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 people who knew about his HIV and
hepatitis C diagnosis was his HIV doctor, his
haematologist, and myself. I happened to also
be his community nurse. And I asked him if he
wanted to do this interview and he agreed that
he would, but that he didn't want anybody to
hear it. And I ended up having to do four
interviews, four -- four sessions with him,
because he was very unwell.
And the last session that I did, in this
interview, was in his hospital bed, a matter of
days before he died. And he finishes the
interview saying, "I know I'm going to die. I'm
really sorry that I was unable to share what
I've been through through my life with my sister
who I love and my mother who I love, but when
I die and at my funeral I want you to give these
tapes to my sister." And that was the first
time that she found out how he actually had
65
died.
So it was, you know -- that was one example.
Some of the examples of the interviews that we
did were full of laughter and full of
resilience, as we talked about yesterday. You
know, what comes out is that individuals are
very, very diverse.
But if anybody wants to hear these
interviews, they are accessible. I may want to
reiterate it's the British Library because one
person that we interviewed was in an audience
like this when I was talking about the project,
and he said, "Where are they kept?" And I said,
"The British Library, Mick", and he said, "Oh
no, I've told everybody I'm in the Natural
History Museum!"
[Laughter]
|
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."
I wanted to ask first about two aspects of
stigma that are referred to in the report and in
the literature: felt stigma and enacted stigma.
Could you explain what those two concepts
mean and what the difference is between them?
ANSWER:
Yes, yes. Well first, just to
say the stigma, so we're talking about
a condition or behaviour which in the view of
the wider society marks an individual as
unacceptably different, and inferior. With felt
67
stigma, people are aware of the social meanings
of their condition. They're aware that they've
got a condition that is regarded as unacceptable
in the wider society. This influences their own
self-identity.
So felt stigma refers to this understanding
of their own possession of the condition which
is viewed so negatively and, obviously, it
affects their identity and enacted stigma refers
to the response of members of the society to
people who are identified as possessing
a stigmatising condition, and this can take
various forms.
It can take particularly avoidance of these
people, avoidance in different circumstances,
socially, at work, and in other settings, and
avoidance and exclusion, and often bullying,
children particularly can be subject to
bullying. It's very, very painful and it was
reported quite extensively by the witnesses.
In addition, some people, even experienced
property being vandalised and, you know, a very
high level of enacted stigma. Fear of enacted
stigma, even if you don't actually experience it
the actual fear that you might is in itself 68
very, very powerful and has a major influence on
people's lives.
|
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 one.
It's called "Stigma management and wellbeing".
There are two parts I wanted to show you and ask
you about. On that first page, right-hand
column, please, picking it up four lines down,
this particular paper it's focus was sexual
orientation, but there are some general
concepts. We see there reference to a process
of stigma management, and it says this:
"This process of stigma management is
a major task for individuals with concealable
69
stigmas who weigh the pros and cons of
disclosure versus concealment and make decisions
based on the circumstances."
Then it refers to another paper, Cain, 1991
"... observed that both options can be taxing
because disclosure often entails planning and
execution, and concealment requires individuals
to attend to many aspects of their social
presentation and lifestyle that would ordinarily
go unnoticed."
Then Henry, if we can turn on two pages.
Right-hand column under the heading, "The role
of suppression", we can see again in the first
paragraph, it talks about suppression:
"A feeling people may experience if they
conceal personal or emotional information they
would like to reveal."
Then it refers to another paper:
"Pennebaker and colleagues showed that
suppression can be detrimental to both
psychological and physical wellbeing."
We can leave that now Henry, thank you.
I want to ask you about these two concepts
of stigma management and suppression, please.
ANSWER:
I can speak from a child 70
adolescent perspective, so a young person who
may have been aware of their condition. Even
with conditions which aren't, we don't think of
as being highly stigmatised, something like
diabetes, for example, there are many, many
adolescents who live with diabetes who don't
tell anybody at school. Who keep it an absolute
secret at the detriment of their wellbeing and
health, so they won't inject insulin, for
example, because they don't want their friends
to know. They don't want to feel different.
So if you multiply this by a million with
something like HIV, where there's masses of
ignorance and negative presentation, media
presentation, and we weren't in the middle of
the social media storm then, but even so on the
television, the dreadful adverts and the awful
newspaper reports that came out, it would have
been impossible for a young person living with
haemophilia and HIV to not be acutely aware of
the potential for stigma and to have to both
manage that but also suppress it, not to tell
people too -- and it's exhausting.
That's one of the things in that paper that
it doesn't say, it talks about the -- what you
71
have to do in order to suppress but it
doesn't -- the end of the sentence should be,
"and it is exhausting", because it is exhausting
to constantly be trying to not let people know
through what you do, or how you do it, or what
you say, or where you go, or you know you don't
tell people about hospital appointments, you
don't tell people about medication that you're
taking, or the fact that you can't go out for an
evening because you're exhausted and feeling
dreadfully ill and you have to pretend that you
just don't want to go, so you get a reputation
as somebody who is not much fun rather than
people realising that you're actually very ill.
So I think that's -- so from an adolescent
perspective, again, that's really, really
difficult and challenging for a young person who
wants to be part of the world, but who has to
prevent themselves participating.
|
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 they have
lived for decades living, in many respects,
a lie. The emotional burden of that must be
huge.
ANSWER:
I think that emotional exhaustion is
really interesting because also as a coping
strategy, if you like, suppression and
concealment have this element of doomed to
failure about them, especially if somebody does
become progressively sicker, and externally, 74
they can't disguise anymore what perhaps has
been happening.
I think, you know, part of the emotional
exhaustion that people feel if they can't talk
about these things is due to this anxiety that
at any moment it could actually all be revealed,
and then the expectation is it's going to be
even worse.
It's a terribly, terribly, if you like,
tenuous way to actually deal with things that
you're scared of.
|
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 psychological support is a stigma
that's attached to psychological services. And,
you know, I remember just an anecdotal
conversation I've had with one of our
77
consultants, and I sort of talked about, you
know, the notion that I might sort of extend
psychological support in an area, and he said,
"Well, you know, Nicky, I don't really want you
to do this touchy-feely nonsense with our
patients", because actually it's still seen as
a woolly concept, providing support for people.
So if the establishments out there see it as
not an acceptable form of support, it's also
another barrier for people to overcome. And
I just felt it important just to say that at
this moment in time.
|
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, "Keeping it in the family,
access to information and service provision,
findings from a study on behalf of the
Birchgrove Group and The Haemophilia Society".
For present passages there is one passage
I'd like to ask you to note on the next page,
please, Henry. It's halfway down the page
beginning, "Then there is paradox", fifth
paragraph down. If you could highlight that and
79
the following paragraph. Could you highlight
the second paragraph adds well, if possible,
Henry, one after that. Thank you.
So this really, in the words of those who
are living with the condition and with the
dilemmas, it encapsulates some of what you've
described, I think.
"Then there is paradox. In the first and
probably second phase of the epidemic in the UK
[this is talking about the HIV AIDS epidemic]
raising the profile was seen to be the way to
connect disease with human beings; to reduce the
stigma and discrimination. People came out to
raise the profile. If the stigma and
discrimination associated with HIV are not
challenged prevention won't work, people will
not come forward for testing, and the move will
be to drive it underground -- with all that that
means.
"So those living with HIV have had to manage
something of a dilemma: to come out and perhaps
experience profound discrimination or to remain
closeted about their HIV status and thus
perpetuate the view that 'It doesn't exist, it's
the province of queers and junkies'; and if they 80
do have it they should stay outside the norms of
the rest of society, including the right to have
children. Confidentiality or coming out,
challenging social attitudes against the
discrimination and stigma associate with HIV
infection or protecting the individual's right
to privacy."
That captures the dilemma for many. In
terms, specifically, first of all, of the stigma
associated with HIV and AIDS, I just wanted to
again put up one of the materials that you've
referenced in your report on the screen, and
just look briefly at the 1980s and then come
forward to the present day. Henry, it's
EXPG0000033, please. This is a paper about
heroin, it says it in the title:
"Heroin injecting and the introduction of
HIV/AIDS into a Scottish city."
Just one passage, page 3, please, Henry, at
the bottom right-hand corner of the page. It's
the last paragraph on the right-hand side,
please. This refers to the advertising
campaigns of the 1980s.
"It was in 1987 that the famous UK campaigns
were launched involving TV adverts which showed
81
the tip of the iceberg and tomb stone images.
Leaflets delivered to every household proclaimed
'AIDS. Don't die of ignorance. Anyone can get
it, gay or straight, male or female. Already
30,000 people are infected'. The major
influence on this was the fear that the
infection would spread into the heterosexual
community as a result of sexual contact with
drug users. There was much less regard for the
hapless human beings who were already infected.
There was little information about what might
happen to them, and estimates of illness and
mortality were guesstimates based on widely
differing reports from around the world."
Do you know if there's been any research or
study about the impact of those public health
campaigns in the second half of the 1980s.
ANSWER:
I don't know of any direct
evidence of that but certainly witnesses
referred to these campaigns as having the effect
of increasing general fear and stigma. The
campaigns were obviously trying to change
behaviours, but by emphasising that HIV was
something anybody could get, and so on, and
knowing about the high death rates, this really 82
increased the fear which stoked the stigma, so
it was an unintended sort of consequence,
really.
|
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, number of examples of enacted stigma,
really quite severe examples of enacted stigma.
I don't know whether you can answer this,
but are there any kind of steps or response that
you think could or should have been taken in the
1980s and 1990s, specifically dealing with this
what's called the HIV or AIDS epidemic that
might have reduced the stigma associated with
the condition or mitigated its effects?
ANSWER:
I don't know if my ...
|
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 people in thinking about these
issues and recognising that you couldn't just
contract AIDS so easily, rather than just
endless sort of printed word and so on. So
I think that we have to think in different ways
of communicating to actually challenge the
stigma.
|
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
could be more easily contracted than it is, and
so on, there is bound to be barriers and
discrimination. So I think it's both. It's the
issues of blame and the issue of fear.
93
|
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 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. This is a 2017 paper by
Northrop, headed:
"A dirty little secret: stigma, shame and
hepatitis C in the health setting."
If we just look down to the bottom of the 94
left-hand column, please, on that page, under
the heading "Introduction", four lines in:
"Illnesses tainted by the stigma of
questionable lifestyles present specific
challenges particularly in health settings when
treatments are sought. Hepatitis C provides one
such example. Within the high-income world, the
hepatitis C virus, replete with connotations of
illicit behaviour and self-infliction, is most
commonly associated with injecting drug use
(IDU)."
Then the paper goes on to talk about an
Australian study with individuals, none of whom
had engaged in injecting drug use, and it says
this at the bottom of that column:
"Despite this, the association between HCV
and IDU was found to be highly problematic,
impacting all aspects of life, personal
relationships, employment opportunities and,
significantly in this instance, access to health
services. Because hepatitis C is often
concealable, the decision to disclose one's
blood status and to whom emerged as a centrally
important consideration. Participant accounts
underline shame, stigmatisation, fears of
95
potential stigmatisation, and extreme caution
around disclosure."
Then it refers to:
"In keeping with subsequent research health
settings emerged as one of the most vulnerable
sites for experiencing stigma."
This paper goes on to narrate various
experiences very similar to the experiences
described by witnesses to the Inquiry. So
I won't dwell upon the detail of the paper. But
this exemplifies the continuing stigma
associated to this day with hepatitis C; is that
fair?
Can I ask someone to answer because the
transcribers wouldn't pick up a nod.
|
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. This is a 2017 paper by
Northrop, headed:
"A dirty little secret: stigma, shame and
hepatitis C in the health setting."
If we just look down to the bottom of the 94
left-hand column, please, on that page, under
the heading "Introduction", four lines in:
"Illnesses tainted by the stigma of
questionable lifestyles present specific
challenges particularly in health settings when
treatments are sought. Hepatitis C provides one
such example. Within the high-income world, the
hepatitis C virus, replete with connotations of
illicit behaviour and self-infliction, is most
commonly associated with injecting drug use
(IDU)."
Then the paper goes on to talk about an
Australian study with individuals, none of whom
had engaged in injecting drug use, and it says
this at the bottom of that column:
"Despite this, the association between HCV
and IDU was found to be highly problematic,
impacting all aspects of life, personal
relationships, employment opportunities and,
significantly in this instance, access to health
services. Because hepatitis C is often
concealable, the decision to disclose one's
blood status and to whom emerged as a centrally
important consideration. Participant accounts
underline shame, stigmatisation, fears of
95
potential stigmatisation, and extreme caution
around disclosure."
Then it refers to:
"In keeping with subsequent research health
settings emerged as one of the most vulnerable
sites for experiencing stigma."
This paper goes on to narrate various
experiences very similar to the experiences
described by witnesses to the Inquiry. So
I won't dwell upon the detail of the paper. But
this exemplifies the continuing stigma
associated to this day with hepatitis C; is that
fair?
Can I ask someone to answer because the
transcribers wouldn't pick up a nod.
ANSWER:
As we know, hepatitis C is more
prevalent than HIV and it's still associated
with some stigma, yes.
|
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 -- seen to be associated, the sort of
stereotype of deviant behaviour, plus fear that
you might contract it.
|
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 go on to say this:
"The main difference was that no educational
campaigns specifically targeted hepatitis C.
The public therefore had very limited knowledge
about hepatitis C and they therefore drew on
their knowledge of HIV which they thought would
be very similar and this frightened them."
ANSWER:
Yes, several people said that
explicitly, "I don't really know but I think
it's a bit like HIV", and then had their image
of HIV.
|
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 that. That can be
obviously distressing and upsetting for the
patient, but it can presumably have a longer
term impact in terms of engagement with
clinicians, trusting clinicians and healthcare
advisers, adherence to treatment and matters
such as that.
ANSWER:
Yeah, very strikingly, I think
we -- (a) we could see that, and that's
consistent with research. I think when people
lose faith in a system, lose that sense of
trust, then (a) -- well, there are two things
likely to happen: either they will try and avoid
or work their way around different parts of the
system, and there's a paper that we talked about
following medical errors, how people tried to
navigate their way around the bits of the system
that they've been offended by.
Or people go into slightly more passive,
sort of resigned, "Well, there's nothing I can
do", you know, and feel that somehow -- again,
the blame gets internalised. You know, "Well,
clearly I've got something that they really
don't want to be bothering with."
99
So I think, you know, there are a number of
ways in which that can happen. And I think --
it's interesting, before the break you talked
about that was then, this is now, well, just
a couple of weeks ago I read a study on looking
at a large trial in America where they were
offering PrEP, which is, you know, a treatment
for prevention of HIV and AIDS to a large, you
know, relatively socially excluded population,
and it was a very large study from Chicago, and
the study that the uptake of PrEP was low. And
they started to look at it thinking it was going
to be this excluded group and it wasn't. It was
the failure of family doctors to really
recommend it. And some actually said out loud
things like, "Well, you know, I'm not sure, you
know, whether it's right to encourage the sort
of behaviour that this is going to allow people
to have", ie, you know, more frequent sexual
contact and so on.
So, again -- and that's, you know, a 2019
paper. So there's still a lot of big issues out
there in terms of, you know, judgement that's
being made by healthcare professionals, negative
judgement. 100
|
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 and
reflect upon and put in the report, that's fine,
but it's obviously an important
-- (overspeaking) --
ANSWER:
Unless anybody has any
immediate --
|
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. One is
society more broadly, and perhaps where there
would be faster change would be as has already
been said, unconscious bias training, which, as
a university teacher, I undergo. It's very 104
important in terms of recruiting students to
university as well as in teaching, so it is
possible.
I don't know what is -- what happens in the
NHS, but I would have thought that this would be
an absolutely core part of effective and
sensitive communication training, which
I presume we will be coming on to.
|
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 that
training programme, so that they are
communicating that experience at firsthand.
From my experience of working in another
area, it's a really powerful message that you're
sitting there and you're actually saying, "This
is how you make me feel", and those exchanges
are really helpful to get people to think about
their biases and to think about how they might
change.
|
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."
And I wondered if you could just elaborate
upon why that is the case.
ANSWER:
Me?
|
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 that permit
them to be accurate givers of their history.
You probably don't communicate well with your
colleagues either. And all healthcare now is
a serious team business, the days of, you know,
a patient going and seeing one individual who
then offers a prescription and everything sort
of is all hunky dory are long over.
People are treated within teams, and so good
communication lies at the heart of absolutely
everything that is done within healthcare. And
sadly, it's one of the areas of health education
that probably receives scant training. In the
course of a clinical career spanning, if they're
lucky, about 40 years, the average consultant
within a hospital will have 240,000 interviews
at least with patients, which is more times than
they'll do anything else in their career. It's
more times than they'll wield a scalpel, take
a blood pressure, feel a pulse. Yet if you
contrast the amount of time that is given over 108
to practical skills, in most of our medical
schools, with the amount of time given to
communication skills training, it's easy to see
why we have a major problem.
|
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 there has been an
increase, and also schools of nursing, in
communication skills training, very often even
the format of the training is poor. You cannot
possibly -- rather as Nicky was just saying, you
can't possibly learn an experiential skill such
as communicating merely by reading a book about
it, or listening to a lecture. And yet that
still is how a lot of our communication skills
training is done.
You have to do it. You have to have
feedback from experienced facilitators, from
patients themselves, if you're going to actually
change the way you communicate in beneficial
ways.
109
|
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 statements that we have
received describe a lack of empathy.
ANSWER:
Yes.
|
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 front of them. That's
what empathy is about. And if you don't
naturally possess those sorts of feelings as an
individual, is it actually possible to teach it
to people?
I suspect it's difficult to teach empathy to
people who are just -- you know, their
personality disposition is that they are not
empathic. However, one can teach them skills of 110
conveying at least a sense of empathy when
they're dealing with people. It's all in the
nuance of the way you say things. You can
always manage to say something that sounds
callous and indifferent, or you can actually say
precisely the same words but say them with
a sort of empathy that is conveyed by either
their non-verbal facial movements -- the fact
that people even look at you when they're
talking to you conveys "Hey, I'm listening to
you. I feel what you're actually saying is
really an important problem for you."
And there's a very interesting paper
that I read a few years ago that I give medical
students and other healthcare professionals who
come on training courses, and it's called "You
me and the computer makes three". Because a lot
of interaction now that takes place within our
sort of, I don't know, GP surgeries as well as
at hospitals, is with somebody in front of
a computer typing things up, and that's when you
also lose all the, you know, key non-verbals.
You know -- and it looks as though somebody
doesn't care if they're just looking at their
computer.
111
|
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 skills. And I think together,
hopefully, those methods down the line will
impact. But the transcripts were really clear
that some of the experiences that people have
had has been really unempathic and definitely
without compassion.
|
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 degree?
ANSWER:
Most curricula do have some of that
within it. As I've said before, though, I think
very often the methods that are used are not
always the most appropriate. And also the time
that is devoted to it is just pathetic, really. 112
And I -- you know, one of the things that
I think is important is that -- and this
actually, I think, is particularly pertinent as
modern medicine becomes more and more complex --
is that you can meet very good communicators who
appear very empathic and, you know, sort of have
the patient's needs right up front there, but
they become so inured to the terminology that is
used within the health service that they might
just as well be talking Chinese to the person in
front of them. And one of the other skills that
I think we need to help people develop is how to
put complex information into easy layman's
terms, without being patronising, because people
are not giving informed consent to tests or
treatments if they haven't actually understood
a word of what somebody has been saying, no
matter how kind, compassionate or empathic they
might appear.
|
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 about having those conversations which
challenges those negative views of patients in
a closed room. So, "When you say that, what
exactly are you meaning about that individual?"
So those conversations, we call them
cross-fertilisation of ideas, because -- the
doctor's conversation -- we learn from them and
they learn from us. And I think that's a really
important way -- that psychology service,
embedding them. It's not only a benefit to the
patient when they have therapy, but for the
wider team as well in learning how to put those 116
prejudices aside.
|
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 terms, of
informed consent, and conversely, the impact of
being treated or tested or entered into research
or clinical trials without informed consent.
Whoever wants to answer?
ANSWER:
Well, informed consent, I mean
obviously again, it's a sort of pivotal thing
within the practice of medicine generally,
because any procedure, any test, at least the
patient has got to have given tacit consent to,
if not written consent to. So if you hear that
a healthcare professional has done something to
you that you were unaware of ever having an
option at least to express whether or not you
wanted this done or not, you're going to feel
deeply mistrustful of absolutely everything else
that follows.
And I think certainly my readings of many of
117
the transcripts, when I attended some of the
hearings as well, it made my hair stand on end
actually seeing how often people reported that
they never even knew that they had been tested
for something, so obviously hadn't given any
overt consent to it, let alone sort of some of
the treatments, particularly when we came to
clinical trials. And that's probably another
topic you might want to move on to.
So I think if somebody does something to
you, because that's what was happening. People
were doing stuff to patients, and they had no
knowledge of having given at least some verbal
consent to it, no understanding of why something
was being done, or had an opportunity to express
whether or not their preferences would be for
one treatment or one procedure rather than
another, if they had different burdens and
consequences associated with them, then that is
deeply, deeply troubling for the rest of the
relationship that that individual will have, not
only with the healthcare professional that they
were initially treated by, but everybody else in
the system as well.
|
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
they'd undergone testing for HIV, they had no
idea that they had, and then suddenly learnt
that they were infected. So with appropriate
consent comes talking through not only the
nature of the test, but the potential results
giving people the opportunity to think through
and prepare, and have support at the time of
testing for the different outcomes, so all of
that is lost through not having appropriate
consent procedures.
|
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 patients may then have to
take on the burden of researching themselves
what the condition means, and we heard lots of
119
testimony about that, and they may find
information alarmist or inaccurate or not
relevant to them and they have no means of
knowing what the correct position is as regards
to their own health.
ANSWER:
Absolutely, and I think that leads to
even deeper anxiety amongst patients. Dr Google
has a lot to answer for. We're talking about
some doctors that you've all actually had
indifferent experiences with, but Dr Google is
universally I think responsible for causing
a great deal of anxiety and confusion.
Patients who have not been adequately
informed about the consequences of things, the
need for different treatments, the, you know,
side effects and, as I said, different burdens
associated with different types of treatment, if
they then go online, they fall prey to all
manner of purveyors of snake venom and whatever
else.
That I think in itself just exacerbates the
confusion that they're already sort of
experiencing. Guiding somebody through the
tranche of information they need to make truly,
not just informed -- I don't like the informed 120
consent. I think it's educated consent that
allows a patient to pull in their own lifestyle
preferences and choices and so forth. That
actually takes time, and some online stuff is
quite good, but it still needs somebody to
direct the patient towards, and I think it was
very alarming, again, in many of the
transcripts, to read how people were just so
desperate to try and find out things that they
went online and, of course, we are dealing with
a time when knowledge in itself about
particularly HIV/AIDS was a little scanty.
|
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 treatments, and we know they
also have some difficult and unwanted side
effects. So if you've got poor information to
start with, you're not going to be supported to
actually adhere to medicines comfortably.
|
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, about when things have gone wrong,
where there has been -- whether you call it
medical error or an adverse incident, whatever
terminology you want to use.
Again, you've set out some principles in
your report, on page 11 in section 13.4.2. I'm
not going to, again, take time to just repeat
what you've set out, but I wanted to ask you if
you can, please, help us with, again, the
psychosocial impact upon patients of not being
told that something serious has happened to them
as a result of the care or treatment that they
have been given or not been given. How does
that impact upon a patient's experience?
ANSWER:
Well, you cited the Elder paper
earlier, which actually was exactly about that.
It was on primary care and it was looking at
when things have gone wrong from a patient's
point of view, from sometimes quite minor
things, like being treated badly, to, you know,
treatments going wrong, adverse drug reactions.
There, they showed very clearly that, first of
all, there were big emotional impacts. People
125
felt angry, they felt resentful. They felt --
the thing that really bugged them, and this
comes out in the other paper that we've cited,
the Southwick paper, that lack of
accountability. That, you know, that people (a)
were not saying what had happened, they weren't
even acknowledging that actually, you know, "It
was us, we did this. We had a role in this, or
the healthcare system in some way."
So there are very clear emotional reactions
there. And that was -- the Elder paper was
relatively minor errors, problems. The
Southwick paper, which I think is a really
informative one, was about a survey of something
like 700 people where there had been serious
medical error, and then looking at two things,
really. First of all, people's emotions. And
people's emotions were really, you know, very
highly affected. They were things like, you
know, surgery that had gone wrong, adverse drug
reactions, treatments that had failed and so on.
Again, lack of accountability, a lack of
explanation, lack of apology, all those sorts of
things really emerged in that. And the effects
on people were 90% of people talked about 126
serious emotional consequences and major
financial impacts, as a result of all of that
happening. And so the impacts there were huge.
Absolutely huge.
You know, it was in the US where the
financial aspects of health are fortunately,
from our point of view, a little bit different
to they are here, but even so, the impacts are
huge. I mean that review, or that survey
I think is a very powerful one, a very powerful
indictment.
|
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 being made, that people stop going
to the doctor.
|
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
Being Open -- we were very struck when we spoke
to patients who had been the victims of
sometimes some very serious medical errors,
including sort of infected blood, but there were
many other sorts of things, operations that had
gone wrong, wrong drugs being administered and
so forth, we were very struck with how those who
were stuck with the anger. They were so
incensed that people had never just 'fessed up
and said right at the outset, "This was our
error. We apologise wholeheartedly. We are
going to investigate exactly what went wrong
here. In the meantime we're going to do
everything possible to try to help you," and
furthermore -- and this becomes the important
thing for many of the people that we spoke to --
they wanted to know that something would be done
to stop it happening to others.
And it was the failure, I think, for people
to first of all acknowledge the problem, but
then not actually try and put in place measures
that would ensure it would never happen to
129
another person. And look at the hundreds of
you, who I'm quite sure actually also
experienced exactly the same feelings: anger not
just for what had happened to you, but anger
that it continued to go on.
That's one of the reasons that the National
Patient Safety Agency actually sort of changed
their name to the National Reporting and
Learning System, because at the very least,
apart from personal acknowledgment and
recompense for what had happened, people so
wanted the system to learn so it wouldn't keep
on happening to others.
|
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 and about the
legal duties of candour, and again, we'll
provide information to core participants about
the duties as they apply in different parts of
the United Kingdom, but I understand that duty
of candour worldwide is not necessarily a new 130
thing, and that there's at least one country
that recognised it in legal form decades ago.
Could you tell us about that, Dame Lesley?
ANSWER:
Absolutely. I mean in New Zealand
40 years ago there was a duty of candour that at
the moment an error was spotted, there was
a legal responsibility, a mandatory
responsibility, to report it, and set in process
not only treatment for the individuals affected,
but also the, you know, legal means to get some
recompense for this.
I think Australia and New Zealand actually
were probably ahead of us, but New Zealand it
was 40 years ago they first published their work
on a duty of candour to investigate, learn, and
recompense the people that had actually been
affected in whatever way it was.
|
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 falsely reassured that they
131
would not be infected. So not only was there,
if you like, an error in terms of an adverse
medical outcome, but they were falsely reassured
that what they were being given was completely
safe and that they should not be making such
a fuss.
So I don't doubt that that would further
contribute to the psychological toll on those
individuals.
|
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 it's made
begrudgingly or many years after the event.
ANSWER:
Absolutely. I mean there is so much
evidence that really what people require is an
immediate hands up, something went wrong here,
rather than, "Well what's going on here?
I don't think this is right. Why isn't anybody
actually talking this through with me?"
There are several things about apologies, 132
though, that are quite interesting to look at.
First of all, a formulaic, "The hospital are all
extremely sorry that this has happened to you"
in a letter, that does not work. That really
does not cut it. The apology has to be
personal. It has to be face-to-face. It's not
necessarily the doctor/nurse that was
responsible for administering the drug or
cutting the wrong arm or leg off, or whatever it
was, who has to be there. It should be, though,
somebody who is experienced in some way. They
have as many facts as they -- as are available,
in front of them, but they can personalise the
apology.
Because too many people report that it's
just a sort of cut and paste letter, and that is
not an apology. Even with the apology, "We are
so, so sorry that this has happened to you",
there has to be a, "Look, we still don't know
all the facts", because you can't always
identify exactly what went on, "but we will put
in place now an investigation. We will keep you
appraised of how that goes as more facts emerge,
but, first of all, I want to know how you at the
moment are actually feeling, what we can do, how
133
we can best support you and, by the way, this is
the treatment that you're now going to actually
really need."
Now, that sounds a lot to do, but it can be
handled well, and one of the things that again
the National Patient Safety Agency "being open
programme" started, it wasn't just that we wrote
a big report; we actually did develop some
training modules that were meant to be used by
all hospitals, where individuals would take
responsibility for, you know, sort of dealing
with medical errors of different sorts of
severity. They'd come to the training
programmes, we'd train them, and part of that,
the most important part of it, was how to do the
apology.
The other thing is that when you're dealing
with a family, of course they're likely to want
very different types of apology. And so that's
what I meant by the personalising it, rather
than just a formulaic, "I'm sorry this happened
to you, it wouldn't happen again."
|
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 Government, to other
public bodies and institutions, and politicians
and individuals?
ANSWER:
You're getting into very sort of
touchy sort of ground here, because obviously
there are levels at which the buck should stop.
And sometimes the people that actually really
have to be made the sacrificial lambs are not
really the people who were responsible. And
I guess, with certain sorts of -- I mean, I use
this term -- well, I don't think you can
describe it as anything other than scandals --
one of the problems with scandals such as this
is that there were probably people who knew
a long time ahead, for a long time, what was
happening, and yet for whatever reason, this was
concealed.
And I think that there does need to be
a very public apology at the highest level, but
meant. But meant sincerely.
|
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 own records or the records
of deceased relatives.
Some might view it as deliberate. That may
be their view. Some may see it as evidence that
they are unimportant, that what's happened to
them doesn't matter to the organisations that
they're asking for this information from. How
might that again impact upon the psychosocial
experiences of the individuals?
ANSWER:
I think that's likely to have
a serious sort of impact on them in terms of
trust and confidence. Even something such as
this Inquiry, sadly.
You know, if things go missing and it was
the people, you know, who call all the shots,
people in power who actually allowed this to
happen, I mean it's funny how similar sorts of
documentation appear to have all gone missing at
the same time in wildly different hospital
situations, schools and whatever, isn't it?
But if people feel there has been an 136
institutional concealment or cover-up of things,
it's going to make them -- really, really
difficult for them to trust even, I guess, what
we're saying.
|
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 or three minutes
to deal with the penultimate topic.
The question of difficulties in accessing
treatments, for example, drug treatments for
hepatitis C, is a theme of many statements. Now
I'm not going to ask you to comment upon what
the reasons for that might have been. We know
there are issues about rationalisation, funding,
and the like. There may have been all sorts of
other impediments to giving people treatment.
I wanted to ask you what -- again, the
psychosocial consequences for individuals,
particularly individuals who have been infected
as a result of NHS treatment, then being denied
the treatment or having that treatment deferred
137
that might address the consequences of that, how
might that affect them?
ANSWER:
You'd feel victimised, wouldn't you?
Doubly victimised, I think.
|
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 HIV in the way that
we've heard?
ANSWER:
Yes, absolutely. Absolutely.
Without question. Without question.
There's very good evidence that when
somebody receives a diagnosis that is
challenging and distressing, that proper,
adequate psychological counselling and support
can make a significant difference to their
ability to develop coping strategies, to the
family's ability to manage. So there's
141
absolutely no question.
|
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 difference
between a support group, which is there to,
like, activate political support in some ways,
to have the condition recognised -- what I would
say is that what's needed is a number of
different therapeutic kinds of support groups.
So there are therapeutic groups where there's --
are facilitated and supported using
psychological theory and psychological therapy
techniques to help people share. It's really
important not to re-traumatise people. We know
that just getting people to tell their story,
again and again and again and again, just
creates a re-traumatising situation and is not
helpful.
There's got to be a way of people working
that through, of transforming a distressing
emotion, recognising their own resilience. 142
There are lots of different ways that people can
be supported, and people can and deserve to
choose the kind of therapeutic support that
works for them, and when it's the right time for
them. So at the immediate point of diagnosis it
can be too raw, too painful, and too difficult
to sit down and talk with the psychologist, but
there will be a point at which -- they should
continually be asked, "How are you doing right
now? How are you dealing with it right now?
Would you like to talk things through and work
out what would work for you?"
And that might be individual work or it
might be family work, it might be couples work.
There are a vast range of psychological
approaches and psychological therapies that will
fit different people in different ways and have
good outcomes.
|
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
143
a means of coping in the absence of any other
form of support?
ANSWER:
That's absolutely right. They can
utilise unhelpful coping strategies which
undermine their own physiological health systems
and mental health systems, but I think it's
really important that for us, as a group of
psychosocial experts, what's come out again, is
that individuals have found important ways of
transforming that experience, and making that
experience a positive one, and so resilience has
been a really important thing that's come out,
that they have found ways, individual ways,
of -- without support, of becoming resilient.
That's not to say support isn't important, but
we must acknowledge that they've found ways of
doing that.
Just to add to what my colleague was saying
here about there's quite a lot of research that
shows with adding psychological care in the
context of the medical setting, that you can
reduce psychological distress, you can reduce --
improve the coping mechanism, and the frequency
people are hospitalised and how long they're
staying in hospital are enormously benefited 144
from having -- adding psychology to the team.
I think it's absolutely right what you were
saying about how -- what kind of psychology
services are available, and in my experience and
certainly when I was doing the work, trying to
do the literature search around this, we found
very little evidence for hepatitis C patients
who had been infected or haemophilia patients,
and the large support literature has come from
the HIV literature, which -- you know, people
were infected -- and MSM literature, which in
some ways, although they had support structures
there, people with haemophilia didn't
necessarily feel that they could access those.
And I think that's -- that was also an added
problem, and I don't know whether you want to
say something about that, Sian, because you've
got more direct experience of that.
|
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 engendered in some further
sense of discrimination or stigmatisation. Is
it fair that they understand it in that way or
experience it in that way?
ANSWER:
It's absolutely accurate.
There is a postcode lottery for mental health
care across the whole of the UK, and depending
where you live will determine whether or not you
have quick or, indeed, any access to child and
adolescent mental health service or an adult
mental health service, whether or not you have
access to increased psychological therapy,
access via your GP. Some GPs will pay for
a counsellor, others won't.
There is a -- it's appalling that there is,
but there is a really significant postcode
lottery in relation to support for emotional
wellbeing.
151
|
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 Centre, and
then you go to Ireland or Scotland and find that
you've got one psychologist doing half a day.
So how does it possibly meet the need? And
I think it's disingenuous sometimes of
healthcare providers to say that they've got
access when the calibre of access or the
quantity that they've got is extremely limited.
And it's those things, I think, that need
challenging.
|
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 through blood and blood
products, and so a number of witnesses have said 152
what they would want is a service which is
sufficiently specialist and focused that those
who are delivering the service understand and
have a good knowledge of the history as well as
of the particular conditions of HIV and
hepatitis C and its consequences. Would you
agree with that?
ANSWER:
Absolutely. And again, I draw on my
experience, and certainly some of my patients
who are in the audience here, where we provide
what we call a dedicated service for people with
haemophilia. So you have an expert knowledge of
haemophilia, as well as hepatitis C and HIV.
And there are joint clinics that are run within
the Haemophilia Centre with all these
professionals who come to the department, and
that involves a psychologist as well. So I do
think, if you -- if the psychologist -- the
psychologist needs to have that history of
infected blood disorder as well, infected blood
products, and -- so that the individual feels
that they can go and they're in a safe pair of
hands, they don't have to start explaining
themselves all over again. Which is very, very
distressing and wearing, you know, takes its
153
toll. So I do think embedding a psychology
service within the medical team, so the doctor,
the nurse, the psychologist is there, normalises
psychology, so there isn't a sense of, oh -- you
know, you see the psychologist and you can have
informal conversations, and when individuals are
ready to have that referral and see
a psychologist for one-to-one and detailed
psychological support, they've already sort of
bridged some of those initial conversations, and
then it doesn't feel like it's something that's
foreign and unusual.
I think the other thing to say about that is
just that we have spent a lot of time
demystifying what psychology is. You bring to
us -- you are the experts with your health
problem and we're learning from you as
psychologists. We're novices. So they may
initially feel like there are power dynamics in
the room where we, the psychologists, are
powerful, but the important role is to educate
the individual patient to say, "Actually, you
know more about this than I do, what is it you
want from this therapy? It's not what I'm going
tell you you need; it's about what you feel you 154
want to get."
And that's a really important way, I think,
services should be structured.
|
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 haemoglobin
disorder. So that's not a service that's open
to those, for example, infected through
transfusion.
You've also, I think, alluded to the fact
that there is very different availability in
different centres across the country in relation
to that.
For some -- and some witnesses, not all,
have said this -- for some, receiving
psychological support at the centre where they
were infected, albeit involving treatment from
different individuals a number of years before,
is itself problematic.
ANSWER:
Yes. And an important dimension in
terms of how a haemophiliac -- and I can only
155
speak for haemophilia obviously, and it is
absolutely right that other people who are
infected also need support, and that sort of
specialist focus work in an area that is
non-stigmatising is very important. That in
a way it's important that, going forward, we are
actually taking account of what people are
bringing to sessions, and -- I've lost my thread
of what the question is now. Can you repeat
that last question for me?
|
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 recommendation would be, and
within our centre, we would go out to centres to
see patients there. And of course this is not
always possible because it comes back to
resources again, if you don't have adequate
psychology resources you can't provide that.
But that would be an ideal way of meeting people
within the community or linking them up with 156
appropriate people in the community to get that
support.
|
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 nations, Scotland, you're miles and
miles away from specialist centres, you're
likely to actually experience other sorts of
illnesses and ailments or your family will,
where you'll have to be treated in your local
centre. And so I guess I'm sort of thinking
about a little more widely as we're talking
about this, that perhaps also there are some
support services that are required for the
healthcare professionals who inadvertently have
been actually involved in these errors. It's
not been their fault, not their responsibility.
It might have happened years before they ever
even joined the service and unless we -- again
I'm coming back to this reconciliation -- it
works both ways. There are some probably quite
157
damaged healthcare professionals out there who
feel desperate about the situation of the
families, and also have a sort of corporate
guilt themselves, that their institution or
hospital did this to people, wittingly or
unwittingly.
And I think, unless we can try and
re-establish the trust factor, it doesn't matter
if you're sending somebody a million miles away,
they might still feel mistrustful of healthcare
professionals there.
|
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. You don't also -- what you have to
have is an understanding of the impact of
illness.
Now, I think one of the things that's really
striking for me was, when I started to read, to
start to get a sense of understanding how many
other people there are out there who have 158
developed these infections as a result of having
something other than haemophilia, so the people
you are referring to who aren't going to
a Haemophilia Centre because they became
infected through a pregnancy transfusion or an
accident or something like that.
So I think it is possible to think more
widely. I think it's possible to have a trained
workforce, and I think you would need to think
about how people are trained in order to start
to help people think about these really
unusual -- this is not usual. You don't come
across people who have been infected by
a healthcare service in your everyday work, but
it is possible for psychologists to work, if
they have an overall understanding, and
I think -- and Lesley has also said this -- that
actually it's not going to be possible to have
"
not going to work, because everybody here in
this room is different, and everybody here in
this room will have a different thing that they
need to think about or work through.
So, again, the workforce has got to be of an
adequate calibre -- and Nicky used that word,
159
"calibre", it's so important -- it's got to be
people who can work with difference, with
diversity, with uncertainty, and not quite know
where they're going to go, but be able to be
driven by what the person coming to them is --
needed. So I'm not entirely sure that it does
need to just be in Haemophilia Centres. I do
think there needs to be some embedding within
a medical service. I think psychology for
chronic illness and emotional distress is very
different to just mental health. You know,
that's why we don't have good evidence for what
kind of treatments are needed. We know what
works for people who just have depression but we
don't know what works for people who have
diabetes and depression or HIV and depression.
We don't have the clinical trials to tell us.
But we have the clinical skills to know what
might work.
We need to be flexible and we need to be
adequately resourced, because without adequate
resourcing what we will get is an unqualified
workforce that will provide unhelpful,
low-quality services, and people will say,
"Well, we're doing something", and that's not 160
good enough.
|
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 expert
counselling, and I think we also need to look at
this in the context of the lack of parity
between mental and physical health, and
Sir Simon Wessely, who produced a report for the
Government before last, I think it was under the
Prime Minister Theresa May, he wanted to see
a levelling up, if you like, of resource for
mental health services. So I would see this as
part of that, as well as having the particular
colour that it has here.
And we've talked about medical errors, and
I don't know what provision there is within the
NHS for managing that. So there are going to be
very, very expert services, such as the kind
that Nicky is providing, but I would want to see
a response that goes across the piste for all
161
the reasons that we've discussed.
|
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, that the illness, the
condition, the infection, is in the family. One
person may carry it, sometimes more than one
person may carry it, but everyone in that family
lives with it, and you cannot provide good
psychological care by just focusing on that one
person. You have to think about their wider
system. You have to think about whether there's
siblings, friends, aunties, uncles. You have to
think about everybody, parents, grandparents,
everybody needs to be considered and included,
because one person may be infected but everybody
is affected.
|
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 those
individuals to be able to manage the situations
that they have found themselves in.
|
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 actually some of those things
exist. Certainly when I worked at the London
Hospital, we had a bereavement service that was
actually run not by specialist psychologists,
myself and a psychiatrist called
Colin Murray Parkes used to train up very good
counsellors, because we just didn't have funding
or enough personnel to offer the service, but
they were very good at actually visiting people,
compassionate friends. There are quite a few
bereavement services that I think, with a little
extra support and training, you could
realistically help to do this job.
163
|
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 think everybody has to get to that
place where they feel ready and able to take
that kind of support, but if you don't know that
that support exists within your vicinity of
where you're getting the care, then that's just
such a travesty, you know, that we healthcare
professionals are not doing a duty to our
population of patients. So educating our
patients about what the service entails is
a really, really important thing to do. And
what it means. So normalising it, again.
I remember when I started working in sickle cell
all those years ago, this -- psychology was seen
as such a stigmatising area, and one of the
biggest advocates for it, and enabling patients
to access it, were the clinical nurse
specialists. They would talk about it in a way
that was useful and helpful, that the patients 164
could access, about all kinds of things that
they found that -- that they would find it
useful for. So there's a role for the
healthcare professional to sell it, if you like,
in a way, so that they know it's there, it's
part of the service they can access, but if you
don't know it's there, you won't -- it's another
barrier, and you struggle for years. And then
you suddenly discover, oh, yes, it's there. So
I think that's an important role.
|
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 vCJD.
That study, which was a small one of 11
individuals, found in those 11 individuals, no
evidence of particular long-term emotional
psychological disturbance.
As the panel know, the evidence that the
Inquiry has received from in excess now of 2,000
statements paints a different picture. Not
everybody obviously responds in a different way,
each -- people respond in their own way, but we
know from what we've been told that it is
something that has weighed very heavily on
a number of individuals, and has been a cause of
considerable fear, anxiety, psychological
distress.
Dame Theresa, I think you have some
observations about why the study which you spoke
about wouldn't be representative of the broader
group with whom we're concerned.
ANSWER:
That's absolutely right, and thank
169
you for giving me the opportunity to expand on
that. So the only study that has been conducted
looking at people who have been notified that
they have a risk of about 1% of having become
infected with variant CJD, so there's a very low
risk, so the only resource that was available
was to interview 11 people, and those
individuals, as far as I know, had not already
had experience of being infected through
healthcare.
So these were individuals who were being
informed of a real but theoretical -- you know,
a low risk -- for a condition for which there
was no test and no treatment. And what we know
from those individuals -- so they're selected --
they're self-selecting, so they were approached,
but if you were feeling pretty ropey about that
notification, you would be unlikely to come
forward to be interviewed. We know from other
research that those who respond to life-changing
risk information, how they respond is very much
predicted by their psychological and emotional
resources before being notified.
So the main study in this area which we cite
in the report was a study which might feel very 170
removed from your experiences, of those who were
found to be at risk of an inherited condition of
Huntington's disease, and undergoing testing.
And the thought always was that if you were
found to have inherited the gene, and you would
go on to develop this condition for which there
was no treatment, you would be understandably
depressed and anxious. And if you found you
hadn't inherited the gene, you would be not
anxious and depressed.
Whereas what the evidence told us was that
how you felt before the testing predicted how
you felt afterwards. So if you were depressed
and anxious before, regardless of your test
results, you felt like that afterwards. So
that's a long way of saying that initial
vulnerability is extremely important in
affecting how people respond to being given risk
information about their health. So for those
who had already been informed that they were
infected, through treatment that they'd been
receiving, whether it's HIV or hep C, to then
learn that they had a chance that they had been
exposed to another infection, that would lead
me to predict, on the basis of what we know, the
171
impact would be very, very different.
|
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 to something
that cannot be tested? Are there any
recommendations or observations that any of you
have about how that should be approached?
ANSWER:
I think, again, it would depend on
the individuals. So for those such as the
infected and the affected that are the focus of
this Inquiry, so already within a healthcare
system where people are dealing with the
damaging consequences of having already received
blood or products or undergone surgery where
they have been exposed to infection, I think, as
Lesley has already outlined, face-to-face
communication, explaining. And as Deborah has
already stated, it's not sort of one-way. So
there's an interaction with an individual, with
a healthcare professional, who has all the
information at their hands, being able to 172
explain in a way that is effective and
sensitive. So checking that people have
understood what this information means, and
providing them with the support that they need
to adjust, to yet more information about
a potential infection.
|
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 test you can
give people, quite a quick one, called the
intolerance of uncertainty test, and it's quite
robust. And it really is highly predictive as
to how well people are going to cope with
different sorts of risky information that
involves uncertainty. So if you have a high
intolerance to uncertainty, you are likely to
find it very, very difficult to live with that,
and will need a lot of really quite intensive
support services to help you through it. But if
you're someone who actually has a high tolerance
173
to uncertainty, then living with this
information is probably not, in the order of
things, as difficult as, you know, thinking
about whether or not your football team will win
on Saturday or not.
|
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 that the
majority of infected individuals and their
families have described of their own experiences
of the trusts and schemes set up to support
them. I think you've drawn attention in your
report to that specialist service, the
specialist guidance for social workers dealing
with vCJD and a national service that has been
established.
I've one further question and then a handful 176
of questions that others have asked to be put to
you. You will have heard from what you've read
and those of you who heard the evidence
yesterday from intermediaries, that there are
a number of individuals who, in giving their
witness statements, giving their oral testimony,
if they've done that, or speaking to
intermediaries, are speaking for the very first
time about deeply personal and deeply traumatic
experiences.
Some have reported that that has in some
respects felt cathartic but is it fair to say
that for some that very experience may also be
traumatic? And, if so, what kind of care or
support should potentially be being made
available for people who are reliving
distressing events?
ANSWER:
I mean I would say that the
research does say that asking victims of trauma
to recount their experience creates
a re-traumatising situation and one where you
could re-experience the distress that you went
through the first time, so just as you asked the
question about what we should do, we should
offer what we can. So we need to make sure that
177
anybody who has been brave enough to stand up
and tell their story needs to know that help and
support is available, and it should be offered.
It may not be taken up, but that's somebody's
preference. But it should be. It should be
offered.
|
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 explain
what you meant by that phrase.
ANSWER:
Ah, well, we have written consent, for
example if you're going to go into a clinical
trial or you're about to have a knee replacement
or an operation. But for certain sorts of
treatments or procedures, the doctor will just
say, "I think we should just run a few blood
tests", and the patient nods, and that's taken
as tacit consent, which I think has been
potentially a big issue here in this particular
problem that patients have had.
A lot of the people who actually claim -- 178
and I don't doubt them for a second -- that
tests were done without their knowledge, I bet
you'd find most of the healthcare professionals
would argue that you had provided at some stage
some tacit content. I can see somebody shaking
their head, and that's exactly it. They would
have picked up, or thought that they had
actually got your approval. Some of them would
have done. And that's what I mean by tacit
consent. If somebody doesn't actually put their
hand up and say, "Excuse me, but what exactly
are you doing here? What does this involve?",
and they just nod, they've given tacit consent
sometimes, some healthcare professionals would
say. I don't agree with the practice, but
that's what I meant by it.
|
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, absolutely.
|
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 needs, and if it's been drawn up as an
effective care plan, the patient or, you know, 180
the impacted or infected person would be party
to that, so they would be collaborating in
developing that care plan and identifying their
needs. Because as we said before, they are the
expert in terms of their physiological and
psychological needs. So it's important that
they are saying to us what it is. And of
course, added to that is a medical and nursing
dimension that goes into that, as well. But
a care plan is useless if you don't have signed
and -- sort of collaboration from the person who
is going to be impacted on.
|
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 even
appropriate because they'd been misdiagnosed or
because they were, for example, a mild
haemophiliac for whom other treatment methods
were well established. Is an additional sense
of injustice or harm that people in those
situations might experience?
ANSWER:
I don't think there's any direct
evidence on that, because that was something
I was interested in. It was bought up by one of
the questions you gave us.
Off the top of my head one would say yes, it
is most likely. But as we said yesterday, you
know, with additional problems, you don't
necessarily get additional or some sort of
linear psychological impact. So terribly
difficult to answer. And my sort of gut, you
know, from what I read and what I've read around
it is yes, you would expect that, because of the
sort of shock and all those other issues that 182
came out of something that was possibly
unnecessary.
|
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 that from
some of the witnesses. You know, because
it's -- we talked about illness having an impact
on, you know, one's sense of oneself and so on
and how one deals with that. And the ways in
which one deals with the sort of demands that
are on you now can vary hugely, and this sort of
heading of what we call coping. So, you know,
a large amount of coping is attempting to deal
with things directly, but a lot of coping is
around dealing with things that actually you
can't change, or you can't prepare yourself, or
whatever. It's out there, it's some enduring
problem.
And I think a lot of people go for a sort of
an avoidant type of coping which might involve
183
blanking oneself off, you know, turning towards
alcohol, turning towards comfort eating, turning
to whatever it is to, you know, avoid that
awfulness that's in you. And it's all part of
that avoidant type of coping that we talked
about that can be very harmful in the long run.
|
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 psychologically depressed. So this is the --
again, it's a background. And many people are
not necessarily aware that they're depressed,
but there's a low level of depression that's
there. And some people are really quite
severely depressed, which then interferes with
people's motivation, ability to live life, then
they might turn to other means of coping, like
drugs and alcohol and so on and -- as a way of
coping. But I think it's something that -- when
I was doing this work, I was thinking really,
that we already -- people are already 184
compromised because of having to cope with two
long-term conditions.
|
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 very, very, very painful situations.
HIV also can be a very painful debilitating
illness, the treatments that go with that. Then
you've got your hepatitis C treatments that come
in on top of that. There's an enormous amount
of treatments. Drugs and alcohol take some of
that pain away, as well as the psychological
pain. It would be very unsurprising in many
ways that people don't turn to those methods of
relief.
|
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 corridor or a clinic. Is
that appropriate, and what are the psychological
consequences of it?
ANSWER:
I don't think any of us even need to
answer that directly, but just -- I mean, I was
totally shocked at the number of reports that we
read where people had been told what had to be
life-shattering information in the most callous,
insensitive manner, with a total lack of
privacy. I mean, to be told the sorts of
information -- particularly as we also have the
backdrop of, you know, the stigmatisation, the
lack of knowledge about things such as HIV/AIDS
and Hep C at the time -- to be told that in
a corridor, to be told it on the telephone by
a receptionist in a GP surgery, that just
violates every principle of common decency, let
alone sort of how medical professionals should
behave.
[Applause]
This is starting to feel like Question Time!
The other thing, actually, on a serious note
that I feel sort of is really important to sort
of say here, and that is that we've already
mentioned that part of the process of coping 186
with a serious diagnosis that's got prognostic
sort of implications, lifestyle implications for
you, part of the, you know, thing that we should
always do to help people is give them some
warning. Fire a warning shot. The realisation
that you have a life-changing diagnosis, that
you're going to have expectations, sort of no
longer -- realise that you're going to need
lengthy treatments, and a lot of this might
never get better. That's a process, and it
needs to be done over time with the right
pacing, with the right sort of information, at
the right level of complexity for the person in
front of you. And no one should ever be told
a serious diagnosis like this by somebody just
who happenchance to come across the information.
People lying on trolleys in an A&E department
being told, "Oh, I think we're dealing with
full-blown AIDS here", I think I remember
reading one transcript. That is just utterly
totally unacceptable. I'm sure that no one
could ever forgive somebody who did that to
them.
And you will find, certainly in the world of
cancer, which is primarily my area, people will
187
recall verbatim the words that somebody used
when it was done insensitively. Bad news is
always bad news. You can't make it good news if
it's bad, but the way in which people receive it
is totally dependent on the person who's
actually giving it.
|
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 they did two needle
biopsies in the months before that, in the February ,
trying to ascertain what was wrong with me, there w as
a lump in my groin and the two needy biopsies were not
enough and so they needed to do a surgical biopsy
which I had been resisting because I didn't want to
have a general anaesthetic because I was pregnant.
And finally I had to give in and, in order to get m y
haemoglobin up, they had to give me two units of
blood.
|
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 permanently in place fo r
about a year.
|
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
never would have found out that I had Hep C at all,
but because they had to do intense screening ... so
just prior to the bone marrow transplant, I was tol d
I was hep c positive and after the bone marrow
transplant, I was seriously yellow and very, very i ll
with jaundice.
|
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 hepatitis C?
ANSWER:
As far as I remember, I was told by my bedside in
quite a matter of fact way, but a serious way, but as
far as I was concerned I was going into a bone marr ow
transplant room with 30 times the normal dose of ch emo
fighting for my life. I had a 50 per cent chance o f
coming out alive and hep c was the last thing. It
literally went in one ear and out the other.
|
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 2000. So
I sort of was on an upward slope and then I started to
go on a downward slope with the hep c.
I started to -- I'd lost so much energy through
all the cancer chemo and my bone marrow being
suppressed through that, it was hard to know what w as
happening and I probably didn't give enough attenti on
to the Hep C symptoms because I thought I'm still
recovering from the chemo. But I began to lose eve n
more energy and have dietary intolerances and brain
fog and have to cancel plans, not make plans -- jus t
chronic, chronic fatigue.
|
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 yo u
wanted to say but you couldn't find the words.
I think I once described it as wading through treac le.
You know, I've got quite a fast intellect normally but
it was just like wading through treacle trying to m ake
conversation sometimes.
One time I drove a couple of miles to my
daughter and her baby and I had brain fog, and I wa s
so poorly and I got there at a play centre and I sa t
and I remember my granddaughter was very small . Sh e
sat looking at me saying, "Grandma, why aren't you
eating your ham sandwich?" And I just -- I couldn' t
eat. I couldn't think straight. I had to go home
early and as I pulled into my driveway, I just smac ked
the car on the side of the driveway because my
cognition was so out that I couldn't even drive
properly and it was my home, but I pranged the car.
In fact, I pranged the other side a few weeks later .
|
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 say, "Well, just go and h ave
a rest. You'll be all right", and it doesn't work
like that.
|
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 school. I tried to d o
an art course that I had to give up because of the
fatigue. I remember coming home one day and having to
go upstairs and just lie straight in my bed, and we
had people coming a round for a film night and
I couldn't do anything about it. I couldn't move a nd
I couldn't actually turn over in bed. I couldn't f ind
the energy to turn over in bed. It was such a deep
fatigue that I -- it's hard to explain it.
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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 I did 20 minutes' weeding i n
the garden, my arms would hurt for days afterwards.
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Subsets and Splits