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100 | 0 | QUESTION:
What have you asked them to do now?
ANSWER:
I've now had to actually ask them to send me 8
everything by email which most people would think i s
an easy thing but because I have photosensitivity d ue
to the autoimmune conditions which I believe have b een
triggered by the hep c I can't go in front of compu ter
screens and everything. I am very light sensitive.
I have to wear 50 plus factor, so I don't go on
computers. I only have a phone. So accessing thes e,
which I don't think my husband or kids should have to
do, is now making it difficult for me to do that.
I don't have that facility or to print them off or
anything.
|
101 | 0 | QUESTION:
All of those incidents have had a very significan t
impact on your family, as have your infections?
ANSWER:
Yes.
|
102 | 0 | QUESTION:
In your statement you've put it like this:
"It's put pressure on all of us. It's caused
stress in my relationship with my husband. It's pu t
stress on my children. I have lost friends and the re
are family members that I no longer see. We don't
have a social life. We don't see anyone. I've hat ed
myself for years. This in itself has had an impact .
If the kids want to do something I am too ill, too
tired, or can't afford it. I haven't been the wife ,
the Mum, the sister or the daughter that I could ha ve
been. All of these things have been taken from me and 9
from my family."
ANSWER:
Yes. I mean, it's to the point that it's caused such
distress I've had to bring my brother with me.
I mean, my husband is incredibly supportive but
because my children are so traumatised they won't
leave the house, he's had to stay at home with my
children and I've had to come here, so I've grabbed my
brother at the last moment and said, "You'll have t o
come. I can't do this on my own". I don't go
anywhere on my own anymore, in case the stigma, in
case, you know, I have panic attacks.
|
103 | 0 | QUESTION:
I want to move on to talk a little bit more about the
financial assistance. We've talked about the lette rs?
ANSWER:
Yes, that's fine.
|
104 | 0 | QUESTION:
But just in terms of the processes, as soon as yo u
were diagnosed with hepatitis C you registered with
The Skipton Fund?
ANSWER:
Yes, because my hepatitis C nurse actually sugges ted
it. She actually told me about it. Because she
said -- she spoke to me, she said, "No, you got thi s
through this. They should pay out", so I applied f or
the notes.
One problem I have with it is that you apply to
the Skipton or EIBSS and then you have to wait to g et
all the information out of your medical professiona ls. 0
You have got to try to get the notes, the proof, th en
you have to get the form signed. I mean, I sent it
in. They asked for more information. It got sent
back. Finally, I got it all sent in and it got
approved but this was well over a year and so, I me an,
they did agree in the end and the same with the SCN ,
they agreed that so I get that, but the fact is why
doesn't somebody get paid from when they register.
Why doesn't somebody pay it if you're infected, and
it's from that -- why don't you actually get back p aid
from when the scheme starts for everybody, because
everybody's been infected and it's not my fault or
anybody else's fault if I don't get diagnosed for
30 years instead of 20 years. Why did I not get
payments from then?
But even when I've got diagnosed they go, "Yes,
it's true. We're not going to backdate it to when you
registered. We're only going to pay you from when you
could actually get all the notes and the informatio n
out of everybody", which was incredibly difficult,
which causes more stress, more time and everything
else.
I mean, yes, and with the uplift of payments and
things it is going to make it easier on myself and my
children and it's, you know, I'm grateful that's go ing
1
to help because I've been pushed on to a life of
benefits. My husband had to give up work to look
after me, so it's really ruined us financially.
I started off a shelf stacker and I ended up as
a key holder of a national store. I was working fo r
one of the large nationals, I was trainee managemen t.
I'd take over. I could do the whole job. I should
have been on an incredibly good wage. My husband w as
working. All gone and now we're just -- so this
little uplift will help but we haven't got a house.
We haven't been able to buy a house because of it.
Again, the same as Andy said, you don't know if
it's going to carry on, you don't know whether it's
going to stop and there is that thing where anybody
else who's just been diagnosed, somebody who is
diagnosed, why should we have gone out without the
payments from back then, just because nobody found us
and told us we'd got this illness because we're
infected years, you know, 30 years ago. Why should
I only have like 12 months' payments?
|
105 | 0 | QUESTION:
You also applied for funding for a specialist bed
because of the joint and muscle pain you suffer fro m.
ANSWER:
Yes.
|
106 | 0 | QUESTION:
And that was turned down.
ANSWER:
It was, yes.2
|
107 | 0 | QUESTION:
What your observations about that?
ANSWER:
I phoned them up and I explained the problems tha t I'd
got and they said, "Yes, you can apply". The one b ig
problem I have is the inconsistency of the informat ion
you get from them because you'll speak to one perso n,
they'll say one thing, and the next time they'll
say -- they said I need a letter from the doctor.
I went to the GP and they said, yes, they'd write
a letter supporting saying I suffered from these
conditions and they thought that a specialist bed
would help me. That I'd been diagnosed hepatitis C ,
I'd got all this, which I phoned them up I said,
"I got this letter", and they said, "That will be
fine", and it phoned up 30 days later saying,
"I haven't had a decision. Is it going to happen".
I'd had to go round getting quotes, because you hav e
to get quotes for the bed, and they said, no, it's not
good enough because she said they, can't -- haven't
actually said it's the hepatitis C that causes the
pain, and I said, "Oh right, okay, well it's diffic ult
to say that", and I went back to the doctor and she
says, "Well, no, hepatitis C itself doesn't cause t he
pain. It can cause conditions that cause pain", bu t
she wouldn't directly say the hepatitis C caused pa in,
so even though I was having all those problems they 3
constantly kept saying no, to the point I didn't
bother going back, because there was no way my GP
said, "We don't know enough about it really anyway to
write these letters but we've said we support you",
and they've turned round and said no.
I was going to ask for the support for the
counselling because I thought I'm getting nowhere w ith
the NHS. I could do with that money to help
counselling, but when you've been -- you've gone wi th
your begging bowl out and they've gone "No", you do n't
want to do it again. It's a horrible process to ha ve
to ask, and to go through a process when you get wh at
you think is enough, you know, you have to go to th e
doctor and say, "Please, can you do this. Please, can
I have a bed please, sir", and they go "No, actuall y,
the wording's not right", so I haven't asked for th e
counselling or anything else and I don't think
I would.
|
108 | 0 | QUESTION:
You have just given up?
ANSWER:
I've given up asking for anything like that.
|
109 | 0 | QUESTION:
Mrs D, those are the questions I have for you. B efore
I ask Mr Lock whether there are points he wishes fo r
me to raise is there anything else you would like t o
say?
ANSWER:
No. I think I'd just, I'd actually just like to thank 4
all the support groups and people who have been the re
for me because nobody in the NHS was. The only way
I found anything out is by some of these wonderful
people and people who aren't here as well who have
help me to get through this, because there's been - -
I was just abandoned by it, and I really do hope th at
one of the recommendations is, from this Inquiry, t hat
there is the counselling and the support and the he lp
there, and I mean proper counselling and support by
people who fully understand how this affects people
and that's put in place from day 1.
|
110 | 0 | QUESTION:
I'm just going to turn my back.
ANSWER:
That's fine. (Pause)
|
111 | 0 | QUESTION:
Just one point Mr Lock asks me to raise, and that is
that we spoke a little bit earlier about the cognit ive
behavioural therapy and the EMDR that you were havi ng
and started.
ANSWER:
Yes.
|
112 | 0 | QUESTION:
Why did that come to an end?
ANSWER:
Because I was going through the -- it was just -- I'd
just started that when we started getting all the
death threats, I'd had the letter, the stress, the
house move, and they said that it was getting in th e
way of my treatment, because obviously my anxiety a nd
everything just went up a level.
5
So it was like being beaten with another stick.
It was like finally you have got some help and beca use
of the infection and the stigma that stopped me eve n
having that help and she stopped it, and then I,
because I couldn't go, I had to -- the sessions had
finished so I would have to go back to the GP and b e
referred all over again knowing that I could go bac k
and see somebody who probably doesn't understand an d
I'd still be under the pressure to be fine after te n
half hour sessions, which isn't going to happen.
|
113 | 1 | QUESTION:
Michelle, you met your late husband Vincent in 1999 ?
ANSWER:
Yes.
|
114 | 1 | QUESTION:
You have got a photo of him you'd like to have on
screen while you're giving your evidence. Just to
explain, we've just received the photograph and we' ve
redacted the faces of your daughters because we don 't
have explicit consent from them to show their faces
for today because we've just got it, okay?
ANSWER:
Yes.
|
115 | 1 | QUESTION:
Thank you, Paul. Before you met
Vincent was involved in a motorbike accident. What do
you know about that?
ANSWER:
Not a lot, really. I just know he was in hospita l for
about six months. He fractured -- well, broke his leg
and he got given four units of blood.
|
116 | 1 | QUESTION:
That accident was on 11 March 1983?
ANSWER:
Yes.
|
117 | 1 | QUESTION:
He was put in traction, as you say. He was in
hospital for about four or six months before return ing
home.
ANSWER:
Yes.
|
118 | 1 | QUESTION:
It was during that stay that he was infected with
hepatitis C from a blood transfusion?
ANSWER:
Yes.
|
119 | 1 | QUESTION:
Can you tell us what Vincent was like.
ANSWER:
Happy-go-lucky, adored his children, loved his ca r
boot sales, a very family-orientated man, loved his
Mum and Dad to death, hard working.
|
120 | 1 | QUESTION:
You had three children together?
ANSWER:
Yes, three children.
|
121 | 1 | QUESTION:
Until 2008 Vincent was well.
ANSWER:
Yes.
|
122 | 1 | QUESTION:
As far as you were concerned, it was a normal famil y
life together?
ANSWER:
Yes. Yes, we had our family holidays camping dow n in
Cornwall, yes, weekend family things.
|
123 | 1 | QUESTION:
Just ordinary day-to-day life together.
ANSWER:
Yes.
|
124 | 1 | QUESTION:
What changed in 2008?
ANSWER:
He just started getting quite ill. His skin star ted
getting quite thin. The slightest knock he used to
start bleeding. He did start drinking. Then admit ted
he was an alcoholic and went to the doctor's to get
help from that, from which he did give up drinking, he
gave up smoking when he realised that he had proble ms
with his liver but at that point we didn't realise it
was HCV.
He got, yeah, they all presumed it was just the
alcohol from the liver, cirrhosis of the liver.
|
125 | 1 | QUESTION:
Let's take the in stages. 2008 to 2009 Vincent jus t
wasn't well?
ANSWER:
No.
|
126 | 1 | QUESTION:
You have said his skin kept bleeding with the
slightest knock.
ANSWER:
Yes.
|
127 | 1 | QUESTION:
He kept getting infections.
ANSWER:
Infections, yes.
|
128 | 1 | QUESTION:
So he would go on to some antibiotics.
ANSWER:
Antibiotics, yes, backwards and forwards from the
hospital, having endoscopies to see what was going on
inside. His stomach kept bloating out. I can't
remember what they call it now. He had to have tha t
drained. Must have had that drained about four tim es,
I think.
|
129 | 1 | QUESTION:
In 2009 Vincent was diagnosed with cirrhosis of the
liver and was told it was probably caused by alcoho l?
ANSWER:
Yes.
|
130 | 1 | QUESTION:
In your statement, you disputed that Vincent was
a heavy drinker and Dr Li has responded to your
statement and highlighted a number of medical recor ds
from different doctors saying that Vincent was
drinking heavily.
ANSWER:
Yes.
|
131 | 1 | QUESTION:
You have reflected and you accept that Vincent was
drinking heavily and, as you said, was an alcoholic
but only from about 2006 and he'd stop drinking by
Christmas 2008?
ANSWER:
Yes.
|
132 | 1 | QUESTION:
Is that right?
ANSWER:
Yes, that's correct.
|
133 | 1 | QUESTION:
So although he had been drinking it had only been f or
a couple of years, it hadn't been for the decades t hat
the doctors seemed to be suggesting.
ANSWER:
No. I mean, obviously prior weekend drinking, so rt of
thing, as any young person does but not to the exte nt
that he did build up to.
|
134 | 1 | QUESTION:
Then Christmas 2008 you're clear that he stopped
drinking.
ANSWER:
Yes.
|
135 | 1 | QUESTION:
Vincent worked as a long distance lorry driver --
ANSWER:
Yes.
|
136 | 1 | QUESTION:
-- during this time and he was involved in an accid ent
in August 2009. Can you tell us what happened.
ANSWER:
Well, he used to deliver operating tables, actual ly,
to hospitals. He lost consciousness at the wheel a nd
ended up going into the back of another car, got ta ken
into the hospital. I had a phone call saying that he
had been involved in an RTA and it was really, real ly
serious. So I phoned his Dad and his Dad and mysel f
drove up there to Sandwell Hospital.
I can just remember walking in there and he was in
his bed and the priest was standing over him becaus e
they didn't think he was going to survive it, and i t
was at that point that the doctor there confirmed t hat
he was hepatitis C positive and I just remember the
shock because we didn't realise that before.
|
137 | 1 | QUESTION:
When he was in hospital in Manchester, at that poin t
in time you were told that he had hepatitis C and t hat
it was likely the cause of the cirrhosis of the liv er.
ANSWER:
Yes.
|
138 | 1 | QUESTION:
That was the first time you were aware that Vincent
had hepatitis C?
ANSWER:
Yes.
|
139 | 1 | QUESTION:
In your statement you've said that you were upset t hat
Dr Li hadn't told Vincent he had hepatitis C.
ANSWER:
Yes.
|
140 | 1 | QUESTION:
Dr Li has responded to your witness statement and s aid
there was an error in the hospital systems, so he
never knew about the result of the hepatitis C test
that he'd ordered.
ANSWER:
No, according to his statement, because at the ti me
I didn't know that but I couldn't understand how co me
Sandwell Hospital picked up on it and Worthing
Hospital didn't, even though Vincent had been to th e
hospital numerous times prior to that.
|
141 | 1 | QUESTION:
If we can have document 3175015, please, it's a let ter
from Dr Li saying:
"Please could you let me know if Mr Baker is
hepatitis C positive. I've heard from two separate
sources, i.e. his GP and a hospital in Birmingham
called Sandwell Hospital, that he's positive. I ha ve
yet to receive a report of this and I can't find an y
record of the result being filed in the notes.
I would be very grateful if you could look into thi s
for me ..."
Have you ever seen this document before?
ANSWER:
No.
|
142 | 1 | QUESTION:
Despite asking for Vincent's medical records, until
Dr Li provided this letter you weren't aware that t his
is what had happened?
ANSWER:
No, no.
|
143 | 1 | QUESTION:
Dr Li, we know from the documents he has provided t o
us, then escalated the issue and raised an incident
report about it with the hospital but you remain
concerned that the hospital had failed to pass on t he
result to Dr Li.
ANSWER:
Yes, if they knew in February, we didn't find out
until April after the RTA accident, where was that
piece of paper? Surely they should have informed
Dr Li about it straight away as soon as they had th e
results.
|
144 | 1 | QUESTION:
Your concern is that if Vincent had been told that he
had hepatitis C in February 2009 when the test resu lt
came back, you are concerned that he could have had
treatment and wouldn't have died.
ANSWER:
That is a good possibility. It's just what if. We'll
never know.
|
145 | 1 | QUESTION:
Dr Li has responded and said that Vincent was too
unwell to receive the antiviral drugs, even when he
was seen in February 2009 because he needed treatme nt
of the ascites and the variceal haemorrhage at that
point. Again, what is your response to that?
ANSWER:
But what if? You just don't know. Like that thr ee
months, all right it's only three months, but that
three months could have saved his life or he could
have had the treatment or had his liver transplant
earlier but it's just the not knowing.
|
146 | 1 | QUESTION:
After Vincent had received treatment for the varice s
and the ascites, Vincent was referred to King's
College London for assessment for a transplant.
ANSWER:
Yes.
|
147 | 1 | QUESTION:
Could we have document 3175011, please. It's the
second and third paragraphs of the letter. Thank y ou.
He doesn't have any major contraindications for
consideration of transplantation at that stage in
August 2009, but if we look at paragraph 3 there we re
some concerns about his heart condition and whether he
would be suitable or not.
Do you remember that discussion?
ANSWER:
I can remember going up to King's College and --
because he reached the top of the list and thinking he
was going to go ahead with the liver transplant but ,
unfortunately, because of his heart failure it was
just too risky for them to operate, so he got sent
back to Worthing Hospital.
|
148 | 1 | QUESTION:
We can see at the end of that letter that there was
a discussion about whether he would have the PEGyla ted
interferon as well but it was subject to, again,
further investigation of his heart condition.
If we can then go to 1825002, please, and the
fourth page which should be a letter dated
22 February 2010. I think it's the next page, Paul .
It's a letter from King's Hospital to the GP and
if we go down towards the end there's a useful summ ary
of his medical history noting that he had been seen at
King's College Hospital in 2009 where he was
considered for transplantation work up. That was i n
August 2009 and at that time the only issues
prohibiting him from listing was of ST depression
identified on a CPEX testing. That's his heart
condition. He had then undergone an angiogram in
October 2009 which delineated no significant corona ry
artery disease.
So in October 2009, as you say, he had gone on to
the liver transplant list and it looked very much l ike
he was going to have a transplant?
ANSWER:
Yes.
|
149 | 1 | QUESTION:
Unfortunately, Vincent became very unwell shortly
afterwards. Do you remember what happened? 0
ANSWER:
What, from King's College?
|
150 | 1 | QUESTION:
Yes, from October 2009. He had a heart condition.
ANSWER:
Yes, I just know he got sent back to Worthing. H e was
constantly at Worthing Hospital. He kept getting
infections, getting confused, tried to escape from the
hospital once and the police had to bring him back.
He just sort of went downhill.
|
151 | 1 | QUESTION:
He had two episodes of a very serious heart valve
infection called infective endocarditis, didn't he?
He had a really nasty infections.
ANSWER:
Yes.
|
152 | 1 | QUESTION:
We can see if we go back to the letter we were just
looking at, when he was seen at King's, here at the
last paragraph of the letter, he's now a Child's B/ C
cirrhotic and the fact he has had an intra-cerebral
bleed in the last 24 hours an aortic valve replacem ent
was felt to be a too high risk because of the liver
and also then secondly and currently liver
transplantation in the setting of acute active
infection and a recent intra-cerebral haemorrhage
would be totally contraindicated.
So by the time he was seen here in King's there
were just too many things going on for Vincent,
weren't there, for him to be either have a heart
operation or to have his liver transplant. 1
ANSWER:
Yes.
|
153 | 1 | QUESTION:
So as you say he was transferred back to Worthing f or
palliative care.
ANSWER:
Yes.
|
154 | 1 | QUESTION:
That was your understanding at the time?
ANSWER:
Yes.
|
155 | 1 | QUESTION:
From August 2009 Vincent was mostly in hospital
because you weren't able to manage him at home.
Can you tell us a little bit of how Vincent was
physically and mentally in those last few months.
ANSWER:
Physically there was nothing of him. He'd just l ost
so much weight. He was all skin and bone. Mentall y,
he was confused. He turned nasty towards the famil y.
He stopped having treatment because he knew that he
wasn't going to last much longer. It wasn't him, n o.
|
156 | 1 | QUESTION:
You have given some examples in your statement, one of
them was when he'd ordered something from the inter net
and missed the parcel delivery. Can you tell us ab out
that.
ANSWER:
Yes, he ordered something. Yes, he was asleep wh en
the delivery come, so he decided rather than wait f or
the next day he decided that he wanted to go up to
Crawley to go and pick it up. I told him that he
wasn't in no fit state to drive the car but I could n't
argue with him, sort of thing. He got in the car. He 2
was meant to go from Brighton to Crawley. He ended up
down in Hastings in a ditch in a tre e and he phoned me
up and he says, "I don't know what I'm doing. I ca n't
move the car", but because he was on the stump of
a tree and then the police come and found him.
|
157 | 1 | QUESTION:
That was one of the few times he was home in that
period?
ANSWER:
Yes.
|
158 | 1 | QUESTION:
Then in the later stages of his illness he realised
nothing could be done for him and he phoned you qui te
regularly.
ANSWER:
Yes.
|
159 | 1 | QUESTION:
What did he tell you?
ANSWER:
Can you read that.
|
160 | 1 | QUESTION:
Of course.
"He sometimes expressed the fact that there was
nothing that could be done in strange ways such as
phoning me and telling me he was having affairs in an
effort to make me angry at him so I'd be less
distressed when he passed away."
Vincent died on 20 March 2010. Can you tell us
a little bit about the impact and the effect of his
death on you.
ANSWER:
It was very hard. Hard on the kids. Obviously, they
didn't have their Dad no more.
3
|
161 | 1 | QUESTION:
They were just 9, 7 and 5 --
ANSWER:
5, yes.
|
162 | 1 | QUESTION:
-- when he died.
ANSWER:
Yes, my older two not too bad, my younger one it' s
affected her quite a bit. She was Daddy's girl, so rt
of thing. Yeah, no, it's been a struggle with the
girls.
|
163 | 1 | QUESTION:
For you you've had to become a single Mum with your
girls?
ANSWER:
Yes, my three girls.
|
164 | 1 | QUESTION:
And you have other caring responsibilities you are
shouldering on your own.
ANSWER:
Yes, at that point I took on my two brothers that were
21 years younger than me, they're twins. One of
them's [redacted] so I'm his carer. Yeah, I was ju st
looking after all five of them and trying to work a nd
keep the house going.
|
165 | 1 | QUESTION:
You have said to me that the girls now are still in
education. They're only in their teenage years.
ANSWER:
Yes.
|
166 | 1 | QUESTION:
Two of them have been okay but the little one has h ad
quite considerable mental health difficulties.
ANSWER:
Yes, yeah.
|
167 | 1 | QUESTION:
Financially -- sorry, before we go there, while
Vincent was ill, how much did your daughters know 4
about it?
ANSWER:
At first I think they just grew into it was an
everyday thing but the more he deteriorated I didn' t
want the girls seeing their Dad this way and losing
his way and not being him, as I said because of his
confused state from the infections and I took them to
see him but not as much. Over time, it just got le ss
sort of thing because I didn't feel it was the righ t
place to take three girls in hospital.
|
168 | 1 | QUESTION:
What do they remember of their Dad?
ANSWER:
Well, they got their photographs. They just reme mber
Chessington, Pontlands Park, not quite so much
Cornwall, not my younger one, but no, they just
remember playing with him in the garden.
|
169 | 1 | QUESTION:
But once he was ill you have said in your statement
that they don't really remember him, apart from the
fact that he was in and out of hospital.
ANSWER:
Yeah, they don't -- no, they can't recall how ser ious
he was sort of thing. I didn't feel it was the rig ht
place to keep taking the girls, even though, yeah, it
was their Dad but the way he was, no.
|
170 | 1 | QUESTION:
You have said that when the family knew about your
husband having hepatitis C they Googled it and what
did they say to you?
ANSWER:
Well, his uncle, he turned round and said to me, 5
"Don't use his toothbrush because you will get it",
sort of thing. Yes, of course, touching the blood
I used to touch his wounds all the time, clean him up,
put his dressings on sort of thing and like I didn' t
think nothing. I was just doing the wifely thing,
looking after him.
|
171 | 1 | QUESTION:
Your feeling about the family was they were trying to
helpful but actually for you it was just too hard?
ANSWER:
No, it was the opposite. That's the worst thing you
can actually do is Google. I've learnt that.
|
172 | 1 | QUESTION:
Financially things have been difficult for you as
well. You stopped a part-time job in November 2009
when Vincent also stopped work?
ANSWER:
That's when I started.
|
173 | 1 | QUESTION:
Sorry, apologies, that's when you started. Can you
tell us about that?
ANSWER:
Yes, because after Vincent's accident, he realise d
that he couldn't actually go back to work because o f
everything that was going on; so he actually resign ed
from his job because he thought it was unfair on th em.
So of course we went on benefits then, but then
I managed to find a part-time job at the school
running the kitchens and thought it was a bit of an
income, the girls were at the school as well, so it
just worked.6
|
174 | 1 | QUESTION:
You have received some payments through The Skipton
Fund?
ANSWER:
Yes.
|
175 | 1 | QUESTION:
What are your views of the financial assistance tha t
you've been provided?
ANSWER:
It sounds a lot but it's not a lot, no, not when the
girls were so young. I mean, he was on a very good
salary, sort of thing, my youngest was five at the
time, sort of thing, so she's 15 now. Yes, it's be en
hard but I've managed.
|
176 | 1 | QUESTION:
But financially it's been a struggle as the girls h ave
grown up?
ANSWER:
Yes. Three girls, want, want, want.
|
177 | 1 | QUESTION:
You feel that the financial assistance simply hasn' t
been anywhere near enough.
ANSWER:
No.
|
178 | 1 | QUESTION:
Compared to what Vincent would have earned if he --
ANSWER:
Would have earned, he was on between £35,000 and
£45,000 a year sort of thing and so what they paid out
was a year and a half's salary, so ... we could hav e
had a house by now, bought a house. I'm still in m y
council house, no disrespect to that. I love my ho use
sort of thing but things could have been different.
|
179 | 1 | QUESTION:
Those are the questions I have for you. Is there
anything else you would like to say?
7
ANSWER:
No.
|
180 | 2 | QUESTION:
I'm going to pick up where we left off
yesterday looking at the psychological and
emotional impacts on family members, spouses,
partners, children, parents, etc.
Some of the emotional responses that
a partner or other family member may experience
will be the same or very similar to those which
would be experienced by the person who is
themselves ill; is that fair?
ANSWER:
Yes. I don't know whether --
Deborah, is that a good opportunity for you to
talk a bit about experience of illness in
families?
|
181 | 2 | QUESTION:
In particular, some of the shared
emotional responses may be fear, uncertainty.
You've alluded to distress, so the distress of
watching a loved one in pain, whether it's
physical or mental pain. We've heard in
particular from witnesses who had family
members, often partners, receiving interferon
treatment, interferon, ribavirin, of the effect
of that on personality, and personality change,
and coping with the personality change, for
example, of one's partner may be an additional
emotional psychological burden for a family.
ANSWER:
Yes, absolutely, and the --
it's that contrast. It's knowing what that
person used to be like and then realising that
they're different and feeling angry about it or
distressed by it. But equally by the fact that
it's not that individual's fault, that it's
something external that's happened to cause
this, and whether it's possible for people to be 4
able to blame the illness, if you like, rather
than blame the person. So that can be very,
very difficult, because you're faced with
somebody who is perhaps short-tempered or grumpy
or distant or withdrawn, and what you want to do
is you want to be with them, and take care of
them, and they might -- be rejecting you or
pushing you away. And so then you get an
additional layer of difficulty, if you like,
that adds to the difficult situation.
|
182 | 2 | QUESTION:
One of the additional burdens
potentially for family members will be
additional caring responsibilities, either
directly for the person who is infected or
having to take on additional caring
responsibilities, for example for children,
because their partner is not able to do that.
What kind of toll can that take in practical,
emotional, and psychological terms, both on
individuals and on families as a whole?
ANSWER:
Well, it can have a significant
impact, psychologically. So it can have an
impact on your identity. So if you imagine you
having -- if you've got a job that you love and
7
you enjoy, and you have to give that job up to
look after somebody that you love and want to
care for, there's still that dilemma of having
to give that job up and what that means for who
you identify as. Because a lot of us see
ourselves as the job. The job that we do is how
we describe ourselves when we introduce
ourselves to people. And that can get lost.
There can be enormous financial implications
obviously if somebody has to stop working. We
see this a lot in families where there's chronic
illness where one of the -- somebody in the
family has to give up a job, so there's
a financial impact.
And socially, if -- again, if you think
about most of the -- most people who have jobs
have relationships within their workplace, they
have friends that they go for a drink with
afterwards or they have the -- you know, the
Christmas party, and that might seem really
minor, but actually is a big thing, because
you've lost that whole social circle and your
life becomes condensed and focused on -- just
into that very small sort of family unit.
So there's a -- and there can be resentment 8
as well. There's all these complicated feelings
that need to be thought about and processed and
understood and spoken about. And as
Professor Weinman said, you very often find it
difficult to talk about it because you want to
protect somebody. You don't want them to know
that you're resentful. You don't want them to
know that you're sad that you've given up your
job or angry or you don't want people to know
that you haven't got money to do things. So
there's also that sort of closing down on
communication, which has an impact on family
relationships.
|
183 | 2 | QUESTION:
We talked yesterday about the process
of adjustment for the person who is unwell, and
the impact upon the concept of self-identity for
the person who is unwell. But what you're
describing is those same two processes or ideas
impacting as well upon family members.
ANSWER:
Absolutely. Because when we --
as we grow, throughout our lives we go through
various developmental phases and -- becoming
a parent, becoming a partnership, becoming
a grandparent, all those different developmental
phases comes with certain expectations, our own
9
expectations from our families, from society,
from films, from everything that we read about
what it means to be a good grandparent or to be
a good mother or a good wife or husband.
And that identity then gets disrupted by the
introduction of an illness and particularly by
an illness that is potentially life-limiting.
It kind of just cuts you off at the knees and
throws -- can throw you under the bus.
If you've got a good support system, then
you can be amazingly resilient and you can pull
together, as John said, and many, many people do
that. Many people do that in an amazing way, an
inspiring way, but equally, it's very, very
difficult.
|
184 | 2 | QUESTION:
There are two pieces of literature
I just want to refer you to there, materials
you've referenced in the report, which provide
confirmation of what you're saying.
Henry, could we have EXPG0000022, please.
It should come up on the screen in front of you.
It's a paper called -- by Golics and others
2013, and it's called:
"The impact of patients' chronic diseases on
family quality of life: an experience from 26 10
specialities."
We can see from the abstract, methods, it
talks about semi-structured interviews being
carried out with 133 members of mostly
chronically ill patients from 26 medical
specialities, family members invited to discuss
all areas of their lives that have been affected
by having an unwell relative.
Then if you look just over halfway down that
page, please, Henry, at "Conclusion", you can
see it says:
"This large scale multi-speciality study has
demonstrated the significant yet similar impact
that illness can have on the quality of life of
patients' family members. Family quality of
life is a previously neglected area of
healthcare which needs to be addressed in order
to provide appropriate support for the patient
and family unit."
Then there are just a couple of references
within the paper I wanted to show you, and then
ask you to comment on. On the same page under
the heading "Background" we can see it said
there:
"The quality of life of family members as
11
well as patients, can be hugely reduced in terms
of physical effects, psychological distress and
social problems."
Then the last sentence of that paragraph:
"Previous work has shown that family members
of patients can be more emotionally affected by
illness than patients themselves."
Then if we turn, please, Henry, to -- it
should be the fourth page. It's headed page 790
in the article itself. That's the one.
Towards the bottom of that page, please or
the bottom half of that page. Thank you.
So we see there under the heading "Emotional
impact" it records:
"92% of the family members interviewed were
affected emotionally by the patient's illness,
mentioning worry (35%), frustration (27%), anger
(15%), and guilt (14%). Worry was reported when
the family members were thinking about the
future or the patient's death. Less common
psychological effects included feeling upset,
annoyed, helpless, stressed and lonely."
Then it's reference to support, some people
finding it difficult to find someone to talk to,
and this resulting in them blocking up their 12
feelings, finding it very difficult to cope,
with many describing breaking down in tears when
alone.
Then if we just go -- the study then looks
at number of different impacts: daily
activities, family relationships, the family
members own health, work and financial impacts.
But we'll pick it up, please -- it should be
page 8, Henry -- in the discussion towards the
end of the article.
We can see there:
"The impact of a patient's illness on
families is widespread and profound. Family
members are affected in multiple ways across all
medical specialities. This study has identified
the major ways in which family lives can be
affected by disease and the commonality of
issues across all diseases."
Then if we can go down the left-hand column
on that page to the second paragraph, thank you.
If you could highlight the paragraph beginning
"Family members", thank you.
"Family members of patients from all
specialities felt a great emotional impact, the
most widely previously reported topic. They
13
often felt they had to hide their feelings from
the patient in order to provide support - for
many this was very difficult. This emotional
impact has a major influence on many areas of
their lives, eg on health and sleep. Family
members of patients can be more emotionally
affected than the patients themselves,
particularly in the area of oncology. This may
be because attention is mainly focused on the
patient and much consideration given to the
patient's needs. In contrast, the family member
and their concerns are usually ignored or not
understood."
Then if we look at the right-hand column on
that page, this is the last reference, second
paragraph down, please, Henry, thank you,
beginning "The impact on family finances":
"The impact on family finances and
employment were major issues. Family members
described the financial impact of having to
reduce or give up work as a result of the
patient's illness, often compounded by the
patient also giving up work. Looking after an
unwell patient is expensive."
Then the next paragraph, please, Henry, the 14
first three lines of that:
"Family members described their own existing
medical conditions worsening, several developed
depression. This study identifies family
members as a hidden patient group, with an
apparent 'ripple effect' of illness; one patient
being unwell has the potential to create several
more 'patients' in the family. This can then
magnify problems with finances and family
relationships in a vicious cycle. This hidden
burden has a potentially huge financial impact
on the healthcare system that could potentially
be reduced by appropriate family support."
Any observations or comments about those
findings?
ANSWER:
I think they fit exactly,
really, with what we're saying. And this is,
you know, part of the very strong evidence that
we've drawn on. There's a huge literature on
the stress of caregiving, generally, whether
it's with, you know, a very sick child or an
elderly parent. And that literature shows
really strongly that, you know, you not only see
psychological changes, you see physical changes,
changes in immune function. There are even
15
studies looking at how quickly -- you know, if
people have wounds, if they are caregivers,
those wounds are slower to heal because the
immune system is compromised because of that
really long chronic stress that's not going
away. It's pretty uncontrollable in that way,
it's something that's always going to be there.
So I think, you know, these sorts of
findings really underline how -- you know, how
much of a burden it can be. But again, as we
said yesterday, for some people, it's a powerful
and important thing to do, and the roles they
take on, as caregivers become really important
to them, become part of that new self, that new
identity. So although it's pretty bleak, pretty
negative, there is that other side that we
shouldn't forget.
|
185 | 2 | QUESTION:
And that's picked up in the second
piece of literature I wanted to just ask you to
look at, which is a World Health Organisation
analysis of the impact of HIV on families.
Henry, that's EXPG0000039, please.
This is a 2005 paper by the World Health
Organisation entitled "What is the impact of HIV
on families?" Again, referenced in your report.
If we could go, please, Henry, to page 4.
Under the heading "Findings", if we could just
highlight the first paragraph, please. It picks
up on one of the very points that Ms Edwards has
made:
"Human Immunodeficiency Virus has a large
psychological, physical and social impact on
infected individuals and their families.
Stigmatisation worsens this impact. It hinders
the prevention and treatment of HIV and hampers
social support and HIV disclosure."
17
It is that latter point I think you were
emphasising then.
If we could go on, please, Henry, to -- it's
the page numbered 8 at the bottom of the page.
Yes, it should be page 8.
So if you look under the heading "HIV and
families", the second paragraph beginning "In
the first 15 years of the AIDS epidemic", could
you highlight that, please, Henry. This records
that:
"In the first 15 years of the AIDS epidemic,
families had to deal with the death and the loss
of family members. Since the introduction of
HAART in 1996, however, their widespread use has
reduced the number of AIDS related deaths in
Australia, Europe and United States. Now
families must deal with the HIV infection as
a chronic disease to be managed for the lifetime
of infected members."
Now. If we just go on, please, to the
page 10, Henry. There's a passage "Psychosocial
issues" which covers much of what we said
yesterday, but if we then look at "Families" at
the bottom of the page, please, Henry, at the
heading "Families", it talks about: 18
"The social stigma that surrounds HIV may
have adverse repercussions not only for the
individual, but also for their family.
"HIV has an impact on partners and on the
dyadic relationship. Care giving is associated
with stress and AIDS-related stigma."
If we go over the page, please, to page 11,
we see in the second paragraph, please, Henry,
beginning with "Children", you see a discussion
there of the emotional distress that:
"... children may experience due to the HIV
infection of a parent."
Then if we go on, please, to page 12, Henry,
under the heading, "The impact of disclosure on
the family", halfway down the page. We pick it
up in the second paragraph:
"A review of the evidence in the early 1990s
showed that when people disclosed their HIV
status, family members experienced a range of
emotions, including feelings of helplessness,
fear of the loved one dying, concern about care
and fear of becoming infected. A recent
qualitative study, with mainly European
participants, showed that even in the post-HAART
era disclosure of an HIV infection may have an
19
emotional impact on the family members; they may
be surprised and saddened by the disclosure.
The potential for terminal illness -- as well as
the impact of medical treatments and constant
adjustment of hopes and fears -- can affect both
the individuals infected with HIV and their
families."
I think that's all we probably need to look
at from that paper, but again, perhaps invite
you, Ms Edwards, to comment upon what we see set
out there.
ANSWER:
Well, maybe one of the others whose
social context --
|
186 | 2 | QUESTION:
We'll come back, certainly, in more
detail to the question of stigma and
discrimination and disclosure. Just turning
back to your report at page 4, and you've said
this, towards the top of the page:
"The dominant picture [this was the picture
that you picked up from the materials you read]
is one of a wide range of negative psychological
impacts often with devastating effects on
day-to-day functioning and quality of life.
These impacts occurred in the context of so many
negative social effects arising from the
relentless health problems and treatment side
effects together with the distressing levels of
stigma that were experienced."
That was the overall picture you derived
from the statements and transcripts and oral
evidence you saw.
ANSWER:
Yeah, I mean, I think --
|
187 | 2 | QUESTION:
Thank you. I was just drawing your
attention to how you'd summarised from your
professional perspective, your understanding of
what you'd read.
ANSWER:
Yeah, I think I wrote that
statement and, you know, but I also think that
just before that, I had identified the
possibility that people could draw some 22
benefits, so it wasn't all bad news, and
I certainly spoke to one or two people yesterday
for whom there had been growth, personal growth,
and so on, but the dominant picture certainly
from all the witness statements and from the
literature is one of a whole range of problems
compounded by, you know, treatments, failing,
further conditions happening, and so on and so
on. And by a lot of the other things we are
going to talk about, by some of the
communication issues.
|
188 | 2 | QUESTION:
Yes, absolutely, we're going to come
on to all of those. Can I ask, before we leave
the topic or the theme of psychological impact,
I wanted to ask Professor Christie about some of
the particular issues that may arise in relation
to children and adolescents because we know
significant numbers of children or adolescents
were infected, in particular with HIV, but with
HIV and hepatitis.
First of all, can I ask you just to talk
a little about the impact of long-term illness
and in particular a long-term illness and
serious illness of the kind we're dealing with
on children and adolescents?
23
ANSWER:
Yes. So I would break it into
two groups, which the first one is children. So
the children who are being very much cared for
and looked after. And are often very protected
by their parents, so may not be aware of the
diagnosis or the full implications of the
diagnosis or may not understand fully the
long-term implications just by virtue of their
level of -- intellectual cognitive level of
skill and ability.
However, what children are aware of is the
fact that they are limited, that they are
prevented from doing things. So they will not
be able to do sleepovers. Sometimes that can be
because their mum and dad might worry about them
being away from home or it might be because the
other children's parents don't understand what's
needed or required in order to take proper care
and so they'll not invite them.
Children with chronic illness often don't
get invited to parties, birthday parties,
because their parents feel they can't be catered
for properly. They might not be allowed to go
on school trips. So all of these things that we
think of as being really part of our childhood 24
and part of growing up, just having fun --
because that's your primary job when you're
a kid, a little one. Your main job is to just
have fun and be looked after. And having
a diagnosis of any illness, but particularly one
which is potentially life-limiting, is going to
stop you being able to do that in the way that
your friends are able to do.
The second group is adolescents, which is
a really different group, and it's -- in some
ways it's the best group, and in some ways it's
the most difficult. Because adolescents are
going themselves -- without any illness
involved, are going through such tremendous
change. Their brains are developing rapidly,
and changing dramatically, developing
decision-making parts of the brain, developing
the parts of the brain that allow you to think
about your future, and the main job of an
adolescent is to decide who I am, who I want to
be, and who I want to be with.
And those three questions are what most
adolescents spend their adolescence doing,
working that out, deciding what they want to go
to university and study, deciding what kind of
25
job they want to have, looking at other people,
identifying role models.
They spend a lot of their adolescence
deciding on their sexuality, on their gender,
who it is they want to spend the rest of their
life with. They spend a lot of their time
completely ignoring their parents. All of us
have done this. It's one of our main jobs, is
just to ignore your parents and borrow money
from them, so that you can, you know -- and
that's a dilemma.
And it is kind of funny, but it's also so
true, and what happens in an adolescent's life
when an illness comes along completely uninvited
is that it knocks you off track. It starts to
get you to question "Can I be who I'd like to
be? Am I ever going to be able to have
a long-term relationship?" And that came out
through a lot of the transcripts. It came out
really strongly that young people -- and I'm
thinking of adolescence as going -- if you look
at the brain literature, right up to the age of
25, 26, 29, even, a young person's brain isn't
fully developed until 29, and that you actually
spend so much time trying to work out who you 26
want to be that the illness completely stops you
being able to think about that in a coherent
kind of way.
And it can cause you to withdraw, it can
cause you to rely so much on your parents that
actually, you stop that whole developmental
process of becoming independent and moving away.
So it's really devastating, an illness. And as
we've all -- we all keep adding as a caveat that
there are many young people who grow through
adversity, and growth through adversity is
a really important psychological idea, but even
with that growth through adversity, there is
still an enormous impact on the decisions that
young people can and are able to make when
they're faced with living with this. And it's
not just them, it's this ripple effect that
we've already talked about, because it affects
them, and it affects their relationships with
their friends. And again, friends are so
important when you're an adolescent. They
matter so much to you, more than your friendship
with your parents.
And your friends will not want to be with
you, they will not want to spend time with you.
27
You will be seen as different. And all of that
is going to affect your ability to develop and
grow yourself, your picture of who you're going
to be.
|
189 | 2 | QUESTION:
Some of those from whom we heard very
eloquent and powerful testimony who had been
diagnosed with HIV as either children or
adolescents, had grown up with it effectively
all their life. And one of the points they made
was they had never known anything different.
ANSWER:
Yeah.
|
190 | 2 | QUESTION:
So in terms of self-identity, their
self-identity was to a very considerable extent
almost entirely shaped by the illness.
ANSWER:
Yes, and if you think about
that, then -- your initial identity, your
initial identity as a core human being is not
one where illness is involved. And when illness
then becomes your identity, it limits you. It
can limit you. It doesn't always, but it can
limit you. It stops you striving. It can stop
you reaching out for things. It can stop you
trying to find things that you may have done.
It may affect your ability to do something like
a gap year. You may -- you know, "Well, a gap 28
year is not for me because I've got this illness
that requires constant medical care."
So it can have that effect on you as well.
So it kind of limits you and changes your
perspective of what your potential is. And all
of us should have this, all of us should have
the potential to be as wide-ranging as possible,
but living and growing up with an illness like
HIV, which has stigma and all of the negative
aspects of that attached to it, that's going to
completely restrict and give you a much, much
narrower focus on what's possible in life.
|
191 | 2 | QUESTION:
As may also some of the practical
consequences of the condition, in terms of
ability to access or complete education.
ANSWER:
Oh, absolutely. So we've
known -- right back 30 years ago, I remember
going on a trip to Washington DC where they were
just starting to look at their cognitive effects
of HIV in children, and they were just starting
to do the very early brain studies, and
measuring intellectual ability, and the impact
on attention and concentration, and brain
function. And very early on, people started to
realise that something like HIV has an impact on
29
the developing brain. And as I've said, if you
think about the brain as an organic developing
process, as something which grows and prunes and
develops based on experience, if you have an
illness like HIV, or the treatment associated --
it's not just the disease itself, the condition
itself, it's the treatment, the medicines --
they affect the brain neurons, they affect the
way the brain connects, they affect the way the
brain develops. So you might have had
aspirations to do something or be something that
would require a certain amount of capacity, and
the illness will take potentially take some of
that capacity away.
|
192 | 2 | QUESTION:
You've alluded also in the report to
particular difficulties for adolescents with
treatment adherence.
ANSWER:
Mm.
|
193 | 2 | QUESTION:
Can I ask you to just comment upon
that?
ANSWER:
Yes, and again, this is
something which is kind of part of being an
adolescent, which is to defy authority, and to
not quite believe what your doctors say. So
when you go to your doctor as an adolescent and 30
your doctor says, "You need to take this
medicine because it will keep you well", as an
adolescent, there is a kind of a bit of you that
thinks, "Well, yeah, you would say that because
you're a doctor, but I'm different", and
adolescents have a sense of being bulletproof,
that kind of sense of central ego, the kind of
like, you know, "Nothing can touch me. Nothing
can harm me. It'll happen to other people but
it wouldn't happen to me".
That's a really important part of being an
adolescent, because that's what helps you take
risks. It allows you to do things like
experiment, to go out and club until
four o'clock in the morning or do all the fun
things that adolescents gets to do before they
have to grow up and become an adult.
Actually, what happens when you are trying
to do all of that with a chronic illness it's
going to have a really -- it's going to stop you
doing it. It's going to have an impact on you.
|
194 | 2 | QUESTION:
Can I ask you about the position for
children. Growing up with a parent who is
significantly incapacitated by HIV or hepatitis,
and who may themselves have -- be carrying
31
a significant psychological burden of their own.
You've referred in the report to a paper --
I won't put it on the screen -- it's a paper
written by Beardslee which talks about how the
children of affectively ill parents are at
significantly greater risk of developing
psychiatric orders themselves.
ANSWER:
Yes.
|
195 | 2 | QUESTION:
We have certainly heard evidence which
supports that.
ANSWER:
Yes, so again, if you think
about this, the family unit, so a child depends
very much on their parent as a source of
emotional care, psychological care, physical
care, and financial care, all of those aspects,
and when a parent becomes ill, understandably
and reasonably, they may struggle to provide all
of those aspects of care, and may not be
emotionally available because of their on mental
health problems.
There's a lot of evidence in other
conditions that where, even where there's no
physical illness, where a mother who has
emotional distress results in the child
developing difficulties. So there's difficult 32
with attachment, early attachment, which is
really, really important for psychological
wellbeing. So the child themselves is affected
by the fact that the parent is ill, and will
grow up trying to care for their parents, even.
They'll work very, very hard to look after
their mum. And in looking -- working so hard to
do that, where there's very little support, then
and now, very little support, for child carers,
that child then becomes separated from their
peers. Again, they can't go -- they may well be
well physically but they can't go to parties
because they'd have to leave Mum at home on her
own or leave Dad at home and not be sure whether
they'd be able to take care of themselves. They
might not be able to go to bed at a time that
they should be going to bed because they have to
stay up to make sure that Mum or Dad take their
medicine. So there are a lot of knock-on
effects on effectively a healthy child living
with a parent who is struggling with a chronic
life-limiting illness.
|
196 | 2 | QUESTION:
We've heard certainly some evidence of
that ripple effect extending into a third
generation --
33
ANSWER:
Yes.
|
197 | 2 | QUESTION:
-- with grandchildren as well.
ANSWER:
Oh absolutely, yes, and it
works all the way down depending on the age of
grandparents but again, if you think about
middle age, and a teenager, for example, whose
grandparents themselves are ill, they may be
looking out for their grandparents because their
parents were ill, so there's so many complicated
possible complications.
If a parent is unwell or a parent has died,
then the normal burden, if you like, of looking
after elderly parents falls on us, as, you know,
we're in our middle age and we've had our kids
but now our mums and dads aren't well and so
we're looking after them. But if we are taken
out of the picture because of something like HIV
or hepatitis, then our teenage children or our
children in their twenties may then have to step
in to look after their grandparents, so it can
be multi-generational.
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198 | 2 | QUESTION:
I wanted to explore some of the social
impacts and I appreciate there's no bright line
between psychological and social, hence
psychosocial, but you've identified in the 34
report, first of all, a range of negative
impacts upon an individual's working life, and
you've identified that can arise in a number of
different ways, inability to work at all, or
having to decline promotion or only being able
to work part-time.
What can be the impact upon an individual
and on a family of those kind of changes having
to be made to working life?
ANSWER:
A major impact, of course, is
financial, and this was a particular problem for
families because over time, as the people's
condition got worse, they would have to go from
full-time employment to part-time employment and
then often come out of employment. So that had
a major impact. Then, in many cases, the carer,
the partner, also had to reduce their employment
or sometimes give up employment, and so the
financial impacts were very great. Of course,
it varied a bit according to age. It was
particularly important for young couples, and
people running small businesses and so on and,
of course, has impacts all along the line,
really, because it's going to affect housing,
it's going to affect other opportunities, so
35
a very, very major impact.
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199 | 2 | QUESTION:
We heard from some witnesses who
talked also about how not being able to work or
not being able to work in the way or in the job
that they would have liked impacted upon their
self-esteem, their sense of being of the person
who ought to be the provider, and the
breadwinner for the family.
ANSWER:
Yes, because, I mean, work often
gives you a sense of identity as well as
a sense -- as well as of other relationships and
opportunities. So all these things were very
important and come through very strongly.
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Subsets and Splits