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0 | 0 | QUESTION:
SIR BRIAN LANGSTAFF:ANSWER:
A. |
1 | 0 | QUESTION:
Q.ANSWER:
A. |
2 | 0 | QUESTION:
Mrs D, on 19 May 1986 you went into early labour with
your first child.
ANSWER:
I did, yes.
|
3 | 0 | QUESTION:
You were admitted into hospital?
ANSWER:
Yes.
|
4 | 0 | QUESTION:
And on 23 May you were told you had to have
a transfusion?
ANSWER:
That's right, yes.
|
5 | 0 | QUESTION:
Before the transfusion was completed it was
disconnected and you were sent for an ultrasound?
ANSWER:
Yes.
|
6 | 0 | QUESTION:
And you describe in your statement that it was al l
rather strange and you didn't really understand wha t
was going on.
ANSWER:
Yes, that's correct.
|
7 | 0 | QUESTION:
Can you tell us a little more about that.
ANSWER:
Well, I wasn't actually told why I'd got to have the
transfusion in the first place. I was just told th e
doctors said that you're having it. They put the
cannula in. They started the transfusion and -- bu t
three-quarters of the way emptying, when th... |
8 | 0 | QUESTION:
When you got to the place you needed to have the
ultrasound, the radiographer was concerned that you
were alone?
ANSWER:
She was very, very concerned. She was shocked, a nd
she said that she was going to call to complain and
ask for a porter with a wheelchair to take me back.
|
9 | 0 | QUESTION:
Somebody did that and you went back to the ward?
ANSWER:
Yes, that's correct, yes.
|
10 | 0 | QUESTION:
When you got back to the ward, you understood tha t
there had been some raised voices amongst the staff ?
ANSWER:
Yes. The lady in the next bed, because I'd alrea dy
been on the ward for three or four days so I'd made ,
you know, a relationship with the woman in the next
bed and she said, in her words, ... |
11 | 0 | QUESTION:
You were never sure whether the hoo-ha was whethe r you
had gone to the ultrasound on your own or whether i t
was about the transfusion itself?
ANSWER:
Yes, because I hadn't been told why I got -- ther e was
no reason, as I knew then, why I should be having o ne.
So I thought at the time when they took ... |
12 | 0 | QUESTION:
Before you were given the transfusion, were you w arned
about any risks of having it?
ANSWER:
I wasn't told anything about it at all, even to t he
point I didn't know why I was having it.
|
13 | 0 | QUESTION:
As a result of that transfusion you were infected with
hepatitis C.
ANSWER:
Yes.
|
14 | 0 | QUESTION:
About a year after the transfusion in June 1987 y ou
didn't feel quite yourself.
ANSWER:
No.
|
15 | 0 | QUESTION:
Can you tell us what was wrong.
ANSWER:
I just started feeling down, depressed, lacking i n
energy. I just wasn't me. Before I'd been full of
life, you know, I did clubs, I was sporting. I'd g ot
a young daughter who'd survived the pregnancy becau se
I wasn't sure, and I should have been full of life... |
16 | 0 | QUESTION:
You've described that you felt like you were carr ying
ten other people around with you?
ANSWER:
That's it. I was just -- everything was exhausti ng.
|
17 | 0 | QUESTION:
So you went to the doctor.
ANSWER:
Yes.
|
18 | 0 | QUESTION:
What did the doctor say?
ANSWER:
You're a working Mum, because I was working, I wa s
working full time, you're a working Mum, you're goi ng
to be tired. That was it, sort of go away because
there's nothing more.
|
19 | 0 | QUESTION:
Over the years you have had a number of physical
conditions.
ANSWER:
Yes.
|
20 | 0 | QUESTION:
Thyroid cancer, several miscarriages, irritable b owel
syndrome, fibromyalgia, an enlarged spleen,
undifferentiated connective tissue disease, as well F3
liver disease.
ANSWER:
Yes.
|
21 | 0 | QUESTION:
You are not sure whether they are related to the
hepatitis C but you often wonder whether they are?
ANSWER:
I very much believe, and it has been said to me i n the
rheumatology department that it was probably the
hepatitis C infection that trigger the autoimmune
conditions, which in itself have put me ... |
22 | 0 | QUESTION:
You believe that there's been a really a cycle of
illness all arising from the hepatitis C?
ANSWER:
I do, yes.
|
23 | 0 | QUESTION:
You had to stop work in 1998. Why was that?
ANSWER:
I hadn't felt any better from the time I was tire d in,
you know, years earlier, but I started getting more
achey, I was exhausted, I was collapsing on the flo or
at work. I'd been really pushing myself because I had
been doing really well at work, wor... |
24 | 0 | QUESTION:
If we fast forward to 2016 because that continued and
went on but by 2016 you were really very unwell.
ANSWER:
I was. I was very, very ill.
|
25 | 0 | QUESTION:
What can you tell us about your symptoms at that time,
just before your diagnosis?
ANSWER:
For months I had been being sick, physically sick .
I couldn't eat anymore. I was losing weight. I we nt
down to just over six stone, which was half my body
weight, and there was just no reason. I couldn't
find ... |
26 | 0 | QUESTION:
Eventually you were referred to a haematologist - -
ANSWER:
Yes.
|
27 | 0 | QUESTION:
-- who did a series of tests.
ANSWER:
Yes, quite a few.
|
28 | 0 | QUESTION:
And you were then told that the test for hepatiti s C
had come back as a positive. With that first test
what did the haematologist tell you?
ANSWER:
Well, he actually phoned me up and told me this o ver
the phone. He said not to worry everything else co me
back clear but this one had come back as a p... |
29 | 0 | QUESTION:
So you had that second test?
ANSWER:
I went back and had the second test, yes.
|
30 | 0 | QUESTION:
Then what happened?
ANSWER:
Then I received a phone call from my GP's surgery
saying they had received a letter and could I go in to
discuss it, which I made an appointment and went in .
I was expecting this to be a letter from any one
of the departments that I was going, either orthoti cs,
rheu... |
31 | 0 | QUESTION:
You said to him that that's not right, that's --
ANSWER:
I said, "That's not right, no, no, no. That's a false
positive. My haematologist told me 100 per cent.
I've had a second test", and he said, "No, no, no",
and he said, "No, it's definitely the second test h as
proved positive".
I mean, I was kin... |
32 | 0 | QUESTION:
As you say, you can still remember vividly the de tails
of that?
ANSWER:
I can remember everything about the room. I won' t go
in that room. I can remember even the stitching.
He'd got a hair on his jumper. The whole lot becam e
stuck in my brain. I can still picture it now.
|
33 | 0 | QUESTION:
And you still have flashbacks to that day?
ANSWER:
I do have flashbacks and I was later diagnosed wi th
PTSD from that point.
|
34 | 0 | QUESTION:
You have described in your statement that you wal ked
out of the surgery feeling suicidal.
ANSWER:
I did. I left, I could not -- I could not comput e or
work out what I'd just heard, the consequence, I'd
been given nothing to help me understand any of thi s
and I just had the GP who'd known me a few ye... |
35 | 0 | QUESTION:
In order to get to that viaduct you had to drive past
your own house.
ANSWER:
Yes.
|
36 | 0 | QUESTION:
As you passed by you realised you couldn't do tha t to
the children?
ANSWER:
Actually, my son was looking out of the window wa iting
for me because he knew I was desperately ill, he kn ew
I'd gone to the doctors', and he was just, sort of,
"Where's Mum? Is she going to know what it is", yo u
know, and ... |
37 | 0 | QUESTION:
It then took a month before you saw anybody again and
on that occasion you saw the haematologist again?
ANSWER:
Yes, I did.
|
38 | 0 | QUESTION:
What was their reaction to how you'd been told ab out
the hepatitis C?
ANSWER:
They were horrified. They were furious. They we re
really, really angry, as he'd asked for the tests.
He'd asked me if I could -- you know, have the test s,
he'd had the tests, he'd had the results, and he wa s
so angry that... |
39 | 0 | QUESTION:
He was able to tell you a little more about what
hepatitis C was.
ANSWER:
Yes. He said, "I don't know. I'm a haematologis t",
because he had actually been checking for blood
cancers, but he'd just screened me for that, for
everything. He said it was a liver illness and the re
were treatments for it... |
40 | 0 | QUESTION:
You then had to wait for a few more weeks to see the
liver specialist?
ANSWER:
Yes.
|
41 | 0 | QUESTION:
You saw the specialist nurse?
ANSWER:
Yes, I did.
|
42 | 0 | QUESTION:
What happened at that appointment?
ANSWER:
She was actually brilliant. She was really, real ly
helpful. She discussed what it was that I'd got,
where I'd, you know, just talked to me to find out
about me and we worked back and found out. Then sh e
asked if I'd had a transfusion and I said, yes, I'd
ha... |
43 | 0 | QUESTION:
You then had a liver scan and established the ext ent
of the damage?
ANSWER:
Yes.
|
44 | 0 | QUESTION:
Did any of the doctors explain to you the ways in
which hepatitis C can be transmitted?
ANSWER:
Well, no. I mean, obviously, first off I had the
letter saying it was through drugs and sex, and the n
my hepatologist nurse said, you know, it's
a blood-borne thing, but no -- but even she didn't
give me any... |
45 | 0 | QUESTION:
You didn't have any leaflets or anything to take with
you?
ANSWER:
There was nothing at all, absolutely nothing.
|
46 | 0 | QUESTION:
You have two very particular concerns about your
infection. Firstly, you have questioned why the
infection wasn't identified earlier, given that you
were receiving treatment for a number of conditions
over the 30 years between the transfusion and the
diagnosis.4
ANSWER:
Yes, I mean, through every pregn... |
47 | 0 | QUESTION:
Your other particular concern is why you were giv en
the transfusion and you've said that you were never
told why you needed it? 5
ANSWER:
I wasn't at the time.
|
48 | 0 | QUESTION:
There's also no record of the transfusion in your
medical records, is there?
ANSWER:
There isn't.
|
49 | 0 | QUESTION:
When you applied to The Skipton Fund you requeste d
your medical records.
ANSWER:
That's correct.
|
50 | 0 | QUESTION:
Can you tell us a little bit more about what happ ened
then.
ANSWER:
Well, I had trouble asking for them and they seem ed to
delay in sending them. When I did receive them,
there's some notes. I was actually admitted on to the
ward on 19 May. There's a page of notes for the 19 th,
the 20th, the 21s... |
51 | 0 | QUESTION:
So there's no record of 23 May?
ANSWER:
No.
|
52 | 0 | QUESTION:
Also you have noted in your statement that the
discharge letter from your admission has a tick in the
box to say that you didn't have anaemia?
ANSWER:
That's correct, which is a surprise because I was
anaemic from a child. I've always been anaemic and
7
I'm still anaemic now. I was anaemic before I... |
53 | 0 | QUESTION:
You've said that that's what worries you most, th at
they have hidden the fact of the transfusion ?
ANSWER:
They have hidden the fact because part of me is s ho uld
I have had the transfusion? Did I need it? It may
have been for anaemia, it probably was -- you know,
they would have found I was anaemic an... |
54 | 0 | QUESTION:
You've said in your statement that the whole situ ation
around the notes and the lack of the records makes you
question whether you were deliberately infected
because you were young and healthy and you say mayb e
they wanted to see what would happen.
ANSWER:
That's correct. That still stands today beca... |
55 | 0 | QUESTION:
You are worried that there continues to be a cove r up
because of something that happened when you attende d
the hospital in April of this year?
ANSWER:
That's correct, yes.
|
56 | 0 | QUESTION:
Tell us what happened.
ANSWER:
Well, I'm always at the hospital, I'm always havi ng
appointments and, as Andy said before, my notes are
quite thick, from obviously regular -- so I notice
them coming when the receptionist gets them out. S o
I went and sat in an appointment and I saw them lif t
the notes... |
57 | 0 | QUESTION:
Can you remember a little more clearly what you r ecall 0
the doctor saying about the notes.
ANSWER:
He said that it looked like somebody had messed t hem
up and that he couldn't, therefore, find -- and if he
tried to look through it could take maybe half-an-h our
to an hour or whatever. You know, he ... |
58 | 0 | QUESTION:
You're worried that someone's gone through your n otes
because you're giving evidence to the Inquiry?
ANSWER:
Yes, because it wasn't -- nobody was aware that I was
going to be giving evidence before, at my rheumatol ogy
appointment my notes were fine, and since then, you
know, all of a sudden, my notes ... |
59 | 0 | QUESTION:
You are represented by solicitors and the solicit or's
contacted the trust?
ANSWER:
Yes.
|
60 | 0 | QUESTION:
They have denied that that is what was said by th e
doctor?
ANSWER:
Yes.
1
|
61 | 0 | QUESTION:
And denied that the notes had been accessed by an yone
inappropriately.
What's your response to that?
ANSWER:
I say that they -- that it is a further cover-up
because the notes were in a terrible mess, the doct or
did say that to me, I could see that they were a me ss,
and the fact that they used the ... |
62 | 0 | QUESTION:
I want to move on from that.
ANSWER:
That's fine.
|
63 | 0 | QUESTION:
You had been diagnosed with hepatitis C in the au tumn
of 2016?
ANSWER:
Yes.
|
64 | 0 | QUESTION:
And in January 2017 you were told you would be pu t
forward for treatment with Epclusa?
ANSWER:
That's right.
|
65 | 0 | QUESTION:
You then had to wait to start that treatment unti l
August in 2017?
ANSWER:
Yes.2
|
66 | 0 | QUESTION:
Why did you have to wait?
ANSWER:
I was told I would have to wait until the NHS fun ding
was available. I was told it was done on a month t o
month basis, that who could have their treatment
funded that month and that you wouldn't know who it
was going to be until they'd had the meeting that
month and... |
67 | 0 | QUESTION:
You feel you shouldn't have waited for treatment.
ANSWER:
No, I didn't see why on earth I should wait for t he
treatment, especially as I'd found out that it was the
NHS that had actually given me the infection and
caused so many medical problems associated with tha t
and the fact I needed the treatment... |
68 | 0 | QUESTION:
While you waited for the treatment to start, did you
have any support?
ANSWER:
No. I had no support. Literally, there was just --
I was just left on my own. It was just like I was
abandoned to sort of be on your own, there's no
advice, there's no counselling, there's no help. 3
"You've got this an... |
69 | 0 | QUESTION:
What would have helped while you had that seven-m onth
wait -- obviously, not having the wait -- but if yo u
had to have the wait, what would have helped?
ANSWER:
Well, I thought actually right from -- I think an ybody
finding out they've got an infection and especially in
the way that anybody's had i... |
70 | 0 | QUESTION:
So that period of counselling came to an end?
ANSWER:
It came to an end rather abruptly, yes.
|
71 | 0 | QUESTION:
Eventually you were referred for some sessions fo r
cognitive behavioural therapy and eye movement
desensitisation and reprocessing treatment?
ANSWER:
That's right, yes.
|
72 | 0 | QUESTION:
You have said that that therapy came to an end fo r
reasons that we will come to.
ANSWER:
Yes.
|
73 | 0 | QUESTION:
But you've said that the fact that the number of
sessions was limited to 10 to 12 was in itself
difficult.
ANSWER:
It is, because if you get therapy and you need to keep
talk through something that's also not just been so
traumatic but, you know, it's ongoing and you need to
take the time to do it, to ... |
74 | 0 | QUESTION:
While you were on the treatment with Epclusa can you
tell us how you were?
ANSWER:
Well, I was hoping to actually have no side effec ts
because it was, you know, all I'd heard was it's
really good, you take it for 12 weeks, you'll be fi ne,
but I wasn't. I don't know whether it was just
unlucky or whe... |
75 | 0 | QUESTION:
Your hair turned a different colour as well?
ANSWER:
Yes, I had -- if you imagine that I'd been ill, I
couldn't be the fit, healthy, happy person already,
then having gone down to 6 stone, I was skeletal an d
I felt horrible. The one thing I had left was
waist-length hair, a lot of it.
The treatment, it ... |
76 | 0 | QUESTION:
You said in your statement:
"My hair was the last thing I had and that
destroyed my self-confidence."
ANSWER:
I just didn't feel like a woman anymore. I didn' t
feel like a person. I was just this ill, skeletal
thing that ... you know.
|
77 | 0 | QUESTION:
You have continued to feel really quite unwell, e ven
after the treatment?
ANSWER:
Yes, I have not felt well since. I just felt -- I've
never felt well. I haven't felt well since 1987 bu t
I've been through everything else and gone through
everything else and I've just felt worse and worse and
worse,... |
78 | 0 | QUESTION:
Mrs D, I'm conscious we've been talking for a lit tle
bit more than half-an-hour. Do you want to take
a break at this point?
ANSWER:
No, I'm fine. I'll carry on. I'll just keep cry ing
in my tissue.
|
79 | 0 | QUESTION:
As you say, you've cleared the virus.
ANSWER:
Yes.
|
80 | 0 | QUESTION:
And you have now been discharged from the liver t eam?
ANSWER:
Yes.
|
81 | 0 | QUESTION:
But that in itself is making you anxious. Can yo u
explain why?
ANSWER:
Because it was, "You've cleared it, goodbye". I was
told I'd got, you know, F3 nearly F4, you know, I'd
got severe fibrosis, it was obvious, it was nearly
cirrhosis, and I am on a lot of other things and
there's no follow up. The... |
82 | 0 | QUESTION:
Since your diagnosis, your rheumatology team has
changed?
ANSWER:
Yes, it has.
|
83 | 0 | QUESTION:
As has your oncology team?
ANSWER:
Yes.
|
84 | 0 | QUESTION:
And you think that is because of your hepatitis
diagnosis?
ANSWER:
I do. I found a change in an awful lot of people as
soon as I got that diagnosis. I wouldn't see the
consultant I'd been seeing for ten years. I'd
suddenly have to see somebody else.
The four-weekly blood tests which became almost
... |
85 | 0 | QUESTION:
You have also had a very serious issue with your now
ex-neighbours?
ANSWER:
Yes, I have. Well, I think it's the ex-neighbour s,
you know, because I never found out who it was --
which is the reason I get emotional because I know
it's coming.
I obviously got in touch with the EIBSS and I,
you know, got ... |
86 | 0 | QUESTION:
The EIBSS reference number I think you called it.
ANSWER:
That's it, yes. And somebody'd written they didn 't
want dirty bloody people like us in their community .
They didn't want to be in the doctor's with me, the y
didn't want to be sitting on the bus next to us, th ey
didn't want their kids to have... |
87 | 0 | QUESTION:
I'm happy to read it if it is too upsetting for y ou.
ANSWER:
Yes, if you would please.
|
88 | 0 | QUESTION:
"They said that people like us should be taken in to
a field and shot and then our bodies burned like
a cull of cows and badgers."
ANSWER:
Which is kind of pretty difficult to take about y our
son. It wasn't just for myself, it was for my kids .
I mean, they were saying it about my kids as well.
|
89 | 0 | QUESTION:
You shredded the letter and got in touch with the
police.
ANSWER:
I wanted it destroyed, yes.
|
90 | 0 | QUESTION:
Sadly, things didn't end there, did they?
ANSWER:
No, it didn't. I mean, I did phone the police an d
actually I spoke to a woman police officer who said
that she'd actually experienced -- she'd been a pol ice
officer in the '80s when she'd experienced stigma w ith
the HIV and AIDS people, so she was con... |
91 | 0 | QUESTION:
It went on for quite some time, didn't it?
ANSWER:
It did go on for some time. I mean, I had securi ty
cameras up where I lived. You couldn't see but you
could just see the stuff being thrown on to the dri ve.
I mean, the cameras stopped the van being sprayed b ut
you couldn't see who. You could just... |
92 | 0 | QUESTION:
You and the family were terrified that perhaps
something worse would happen, that the house would be
burnt down?
ANSWER:
We did. It just made it very clear that it was, like,
leave or die. And I was petrified. I mean, I had to
make my children aware that there was a threat. I had
to say "don't go ou... |
93 | 0 | QUESTION:
After about five months you were able to move?
ANSWER:
Yes.
|
94 | 0 | QUESTION:
Move house?
ANSWER:
Yes. We had to wait for the council. Because of the
financial position that my husband and I had been p ut
in through the illness, we had to rent from social
housing. So we had to wait for them to find somewh ere
and agree it and for us to move.
|
95 | 0 | QUESTION:
But since you've moved house, it's obviously got an
ongoing impact, as you've said, on you and your
family.
ANSWER:
Yes.
|
96 | 0 | QUESTION:
But more recently you've again had issues with le tters
from the EIBSS.
ANSWER:
Yes. I mean, I did complain to the Royal Mail at the
time when the one letter -- because it was obvious
that the one letter had gone missing because it had
got my EIBSS number on which showed that they'd --
somebody had r... |
97 | 0 | QUESTION:
You've had two letters arrive in plastic bags whi ch
have been opened?
ANSWER:
Yes.
|
98 | 0 | QUESTION:
And then last month another letter has gone missi ng?
ANSWER:
Another letter, yes. I mean, I really, really ri pped
into the Royal Mail over it because it was a new
7
address and I was, like, oh my god, my kid's are go ing
to be -- somebody's going to find out where we are
again, the whole thing's... |
99 | 0 | QUESTION:
You say you have asked the EIBSS to send things i n
plain envelopes but you don't think that can be hav e
been happening because of the most recent letter go ing
missing.
ANSWER:
Yes.
|
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