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46,600 | 345 | QUESTION:
Yes.
So as we've seen, there is a query from the
Minister about
w
hen
heat treatment is likely to be
ready.
A
further minute is provided f
rom
Mr Morison on
26 November 1984
.
I won't go to it now but it outlines
developments in trials of heat treatment
of
PFC
21 September 2022
69
Factor VIII
,
suggests when PFC heat-treated Factor VIII
is likely to be
introduced
.
Says that will be at the
beginning of 1985. As for press statements, in
this
minute Mr M
orison
wrote:
"Mr MacKay's point
on publicity about antibodies
is well taken. We are keeping in close touch with the
Blood Transfusion Service on the matter, which has not
so far been picked up by the
media."
This is late 1984. The Inquiry has previously
considered some of the consequences of the time that
passed between this discovery being made that Edinburgh
patients
had
developed antibodies to
HTLV-III
, the time
that passed between that recovery and the patients and
their families being informed
.
One of the consequences it might be said, of the
time that it took for that information to be shared and
to
become
public knowledge was that public discussions
of the safety of PFC Factor VIII at this time
,
late
November 1984
,
took place in the absence of that
information.
I'm going to turn relatively briefly to
a
newspaper
article, PRSE0003234.
We can see the date of this article in the top
left, November 28, 1984. The title gives a good
indication of what the article is about
:
70
"
'
Good Scottish blood
'
lessens the risk of
disease"
I'm not going to go through all of it, sir, unless
that would assist. I'll just highlight a couple of
parts. We start with the introductory paragraphs:
"Not one person
has contracted AIDS in Scotland as
a result of blood transfusions or treatment with
preparations made
from Scottish blood.
"
That's
no
nationalistic boast
.
It's a tribute to
the Scottish Blood Transfusion Service who
,
from the
first outbreak of AIDS here about
two
years ago
,
went on
the alert for high
-
risk donations of blood."
Now, it might be noted that that first paragraph
might be strictly true in the sense that
what happened
is that it has been discovered that patients had
developed antibodies to HTLV-III
rather than develop
ed
AIDS. This varies. It might be thought nonetheless
that there is a disconnect there between how the risk is
described in this introductory paragraph and what was
known about the risk from PFC factor products by this
point
.
And if we could
zoom
out
,
please
,
Lawrence, and
then the left-hand column that's headed "Caring", I just
want to highlight the first paragraph there:
"Professor Ronald H Girdwood, president of the
71
Royal College of Physicians of Edinburgh and chairman of
the Scottish National Blood Transfusion Service (the
donors' representative body) says: 'I think the public
should be reassured -- I do not think people in Scotland
have anything to worry about, whether they are getting
blood transfusions or other treatment with blood
products
'
."
Thanks, Lawrence. That's all I wanted to cover
with that document.
Now
,
the following day,
29
November 1984
,
a meeting took place with representatives of the HHD,
the SNBTS, and the Haemophilia Centre Directors in
Scotland to discuss issues related to the Edinburgh
patients. The meeting also discussed positive test
results in haemophilia patients elsewhere in Scotland
who had been treated not simply with PFC Factor VIII but
also with imported Factor VIII. I won't go to the
document but it was chaired, that meeting, by Dr Bell,
attended by other HHD officials. The meeting notes
described discussion of what were termed "very difficult
ethical problems", including whether to tell patients
and their relatives of the results.
About a week later,
5
December 1984, the Minister
was updated
again
.
And I will go to this one
.
It's PRSE0003032.
72
Sir,
this
is
addressed again to the Private
Secretary to Mr MacKay, copied to the Secretary of
State's Private Secretary. It's dated
5
December 1984
and it's from Mr Davi
e
s
.
Now
,
in the first two paragraphs of this minute
there's a summary of the meeting that I just described,
which took place on
29
November. There is then in the
third paragraph
,
that
begins
,
"From the figures
available"
,
a description of the position as it was then
understood to be by the officials.
"From the figures available it appears that, out
of the approximately 400 haemophiliacs in Scotland
...
"
And
actually,
if we could perhaps
zoom
in on this
paragraph, Lawrence
.
Thank you.
"
...
no more than about 10% have antibodies to
HTLV
III
. Only other countries themselves
self-sufficient in Factor VIII can match these figures.
We understand that in England
,
where there is more
reliance on imported Factor VIII, the incidence is
therefore considerably greater
.
In the United States
itself the great majority of haemophiliacs will have the
antibodies. It should be stressed that
, t
hough
antibodies to
HLTV-III
are believed to be a precursor to
AIDS, their presence does not necessarily mean that the
individual will develop that disease. Knowledge remains
21 September 2022
73
incomplete
,
but the current medical view is that only
a small proportion (probably less than 10%) of
individuals with antibodies will consequently contract
AIDS."
If we go to the next paragraph there is
a reference to recent press articles describing the
position as it was understood by the press in Scotland,
and then this:
"
No
statement
can be made at the moment until the
haemophilia
directo
rs
resolve the very difficult ethical
problem of what action to take with regard to their
patients about the matter
.
"
Reference
to
the position in England and Wales
.
And then briefly just over the page, the top of
the first paragraph on this page:
"The
[
Blood Transfusion Service
]
believe that they
have now
identified the donor responsible for the
contamination of the batch of Factor VIII."
Then in the
final
paragraph, the Minister
is
inform
ed
that the PFC has started
heat
treating
Factor VIII
.
The first batches are now being issued for
trial, and for all Scottish
-
produced Factor VIII to be
heat treated by the end of January. So that's
5
December 1984.
Mr MacKay's Private Secretary responded the
74
following day
,
on
6
December
,
relaying that
the Minister
hoped
that the Blood Transfusion Service in England and
Wales had been informed about this donor who had
contributed to the contaminated batch so that they could
decline his blood if offered.
We move forward again to
12
December 1984 when
Home and Health Department officials were informed that
a journalist from the Yorkshire Post had learned about
the Edinburgh patients and intended to publish an
article, but also that the journalist had agreed to
postpone publication until
20
December.
I'm going to go to a document in which the
Minister's response to this
development
is recorded
.
It's PRSE0001293
.
Now
,
the date of this is
12
December. It's from
Ms Teale, who's private secretary to Mr MacKay,
addressed to Mr Davies, copied to various others, titled
"AIDS
:
Yorkshire Post Inquiry
".
The first paragraph
records that Ms Teale
had
discussed this issue with the
Minister and then goes on to say that:
"Mr MacKay is firmly of the opinion that we should
not make any announcement at this stage before those
concerned have been told that they
have
been affected.
He does however
feel
that it is now absolutely
imperative that every effort should be made to inform
75
the haemophiliacs or their parents
,
as I understand that
some of them are in fact children."
"
Mr Hoy
[
who was an official in the Scottish
Information Office
]
tells me that
,
if the Yorkshire Post
do decide to follow up this story, it is not likely that
they will publish it before a week tomorrow. It would
therefore seem obvious that every effort should be made
to inform the people concerned as soon as possible and
definite
ly
by the beginning of next week.
"
In the meantime Mr MacKay feels that we should
respond to any press inquiries with the line that we
have identified various people with the problem, that we
are taking steps to inform them and that in the meantime
it would be extremely distressing for these people
,
particularly the parents of children, to read about it
in
a
newspaper
,
not forgetting that press publicity on
this before the people have been informed could stir up
a totally unnecessary scare amongst the 400
haemophiliacs in Scotland."
Now
,
the meeting between
patients and their
families and
haemophilia clinicians was organised for
19 December 1984. In the lead-up to that date we can
see
--
and around that date
--
we can see the Department
officials working on a press release to be issued at the
same time as the publication of the Yorkshire Post
76
article which was expected on
20
December.
I'm going to turn briefly to that press release.
It's PRSE0000225
.
We can see the date at the bottom of the document
is December
20,
1984
.
The title is "New measures to
counter AIDS"
:
"The Scottish National Blood Transfusion Service
has announced
today
that all Scottish produced supplies
of Factor VIII have now been heat treated to counter
HTLV
III,
the virus that can cause AIDS. Factor VIII is
the blood product used in the treatment of haemophiliacs
and supplied to the NHS in Scotland by the SNBTS."
So
leading
in this press release
with developments
related to heat treatment
.
Then in the second paragraph
,
reference to the
Edinburgh patients
:
"This move follows the recent discovery that
15
..."
And I should say
,
sir
,
by this point it had been
clarified that it seemed that 15 rather than 16 patients
were affected
.
"...
that 15 Scottish haemophiliac patients
treated with a particular batch of Factor VIII have
developed antibodies to
HTLV III.
It
is
suspected that
the pool of plasma used to prepare this batch of
21 September 2022
77
Factor VIII contained blood from a donor who had been
exposed to the virus. The batch has since been
withdrawn."
There is then
,
in the remainder of this press
release, reference to the understanding at the time that
developing
HTLV-III
does not necessarily mean
contracting AIDS. Then this:
"The problem is much smaller than in most other
countries
,
because in recent years Scotland has
become
virtually self-sufficient in the production of
Factor VIII and has imported
very little commercially
produced
Factor VIII which carries a greater risk of
transmitting AIDS."
Just finally
,
before I leave this topic, picking
up on the date there, this is December 20
,
1984, in the
introduction to the section
h
as suggested that
haemophilia clinicians and the SNBTS became aware of the
results of at least some of the Edinburgh patients in
late October 1984
.
We know that the HHD's officials and
the ministers, the Minister involved, were made aware by
20
November 1984.
Sir, that was all I intended to say about this
particular issue relating to the Edinburgh patients and
their
discovery. I'm going to move on fairly quickly
,
because we've got a lot
else
to cover, to the
78
introduction of screening for
HTLV-III
.
Now, as a b
r
oa
d
brush summary
,
what the evidence
suggests is that by the summer of 1984
HHD officials
had
begun considering the introduction of an
HTLV-III
screening test
,
had
become
-- had begun to
become
aware
that a screening test was being
developed
.
The written note summarises their
involvement
in
these developments in
the summer and autumn of 1984,
including their contact with the DHSS about the creation
of a UK working party to consider the issue.
Now, we can see DHSS and SHHD officials
cor
responding directly during this period.
The document I intended to take you to, sir, in
which we can see that happening
,
comes from
January 1985
,
and it's when DHSS officials provide
a copy of their ministerial submission on the
introduction of
HTLV-III
screening, rather than anything
earlier than that.
What we see in the documents is HHD officials
,
both administrative and medical, looking at that
submission, beginning to consider the recommendation
that they should make to Scottish ministers.
Now the actual DHSS submission has been
considered
by the Inquiry previously
,
and for reasons of time I'm
going to avoid going
to
it
,
but I'm going to instead
79
focus on the response of the Department's officials to
this development in England and Wales.
The first is a minute from February 1985. It's at
PRSE000 --
ANSWER:
Can you just help me with this:
a little earlier this morning I drew attention to the
fact that the Minister wasn't told clearly that
a screening test might be in the wings
and undergoing
pilot tests in England
,
and wasn't informed of that by
his officials.
You're now telling me there'd been discussions in
the summer and autumn of 1984, including contact with
the DHSS in London, updating on the progress that
science was making towards developing the screening test
which had been after all anticipated when Dr Gallo made
his announcement that he'd discovered the cause of AIDS
back in the -- in April.
So what was the state of the knowledge of
screening of
HTLV-III
amongst the officials in Scotland,
and at the time the Minister was briefed? D
o
you have
any information?
|
46,601 | 345 | QUESTION:
I hope that the documents we're about to look
at will help our understanding of the knowledge of
Scottish officials on that particular issue. The time
the Minister was briefed, w
ould
appear to be
,
the
80
Minister in Scotland, 21 March 1985. I'll also come to
that --
ANSWER:
Well,
that's --
yes
, but the document
I drew attention to earlier was in November, I think,
wasn't it?
|
46,602 | 345 | QUESTION:
Yes
.
ANSWER:
About 2
0
November, I think. And if
that is so, then what you're telling me at the moment,
or what you've told me, you're summarising -- you're
moving toward, I appreciate, to 1985, but you are
summarising the knowledge they had been developing in
the Department in Scotland in the summer and autumn of
'84
I
just want to understand what that broadly was.
Was it that that a test was about to be
trialled
?
A test could be used? They must have appreciate
d
that
there was some form of screening if the Edinburgh cohort
had after all tested positive for having antibodies to
HTLV-III
in their blood.
What was the position?
|
46,603 | 345 | QUESTION:
Most of the documents at least that we've
summarised in the written note, and
it may be that we
can look
at
this furthe
r, seems to
suggest a fairly
high
level state of knowledge
.
There's one document which
might help
,
sir
,
from August 1984
,
which I
could
bring
up now
which
give
s
some insight into this issue
.
21 September 2022
81
ANSWER:
Yes
.
|
46,604 | 345 | QUESTION:
Lawrence
,
it's SCGV0000147
_
079.
ANSWER:
You mean_079?
|
46,605 | 345 | QUESTION:
I'm sorry,
_079 is what I mean, yes.
S
ir,
it's a
16 August 1984
minute from Dr Bell to
Mr Murray in the Department
,
and it's titled "Testing of
blood donation of AIDS"
.
Dr Bell said this:
"I have information that research and development
work in London is proceeding with the objective of
introducing a screening test for
HTLV
III
,
the
putative
causal agent of AIDS. Intensive work in this field is
,
of course
,
also going on in the United States, suitably
encouraged by commercial motivation.
"Dr Cash has already indicated to Mr Davis that
additional revenue costs
have to be foreseen for the
introduction of an AIDS screening
test
for blood
donation. I think Dr Cash's view that resources for
this purpose will be needed in the year 1986
/
7 is
probably right. The BTS in England are already
addressing themselves to this problem and DHSS is in the
picture. Until more information about the cost of a new
test is available we can only work on the estimates
already given by Dr Cash."
An example of a document which might be suggested
82
to illustrate a
high
level sort of knowledge in
anticipation that a screening test was being developed
and would eventually be introduced, not
, at
least from
this document
,
an understanding that that was going to
happen imminently.
ANSWER:
The other curiosity, I suppose -- you
can tell me -- in the documents you've been looking at,
has there been any reference to the article in
The
Lancet on 1 September 1984 which was reporting on
North London, but plainly they'd conducted a fairly wide
screening of people who were haemophiliacs being treated
in North London, and had discovered that 34% of them
had -- were positive for antibodies.
So that might have suggested that there was a test
available, at least for the researchers, plainly it
wasn't a general screening test, but any reference to
that in The Lancet article at all in any of the material
that you've looked at?
|
46,606 | 345 | QUESTION:
Not that I can recall off the top of my head,
sir. We will double check and find out if there are any
references to that article. I can put it this way: it
sounds like the sort of article that I would have picked
up and included in this section of the written note if
it had been referred to, but we will double check the
position and see if we can find any reference to it.
83
ANSWER:
Yes, thank you.
|
46,607 | 345 | QUESTION:
Sir, if you do want to get a clearer picture of
this time period in the second half of 1984 and what the
understanding of SHHD officials was, it may be worth
looking briefly at a December 1984 SNBTS directors
'
meeting which was attended by officials from the Home
and Health Department where there was an update on where
matters had development in the introduction of screening
test.
Lawrence, it's PRSE0001767.
S
ir,
we can see 11 December 1984,
that
meeting
chaired
by Dr Cash, attended by Dr Bell and Mr Murray
.
And if you could
zoom
back out, please. Go over
the page. Over the page again
.
I'm sorry, I'm just going to have to identify the
entry dealing with screening.
It's
the
second half of this page
.
ANSWER:
It's when Dr McClelland reports
back
on the meeting
he's
been at in the late November
.
|
46,608 | 345 | QUESTION:
That's right
,
sir, yes.
ANSWER:
That was the 27 November
'
84 meeting
he
was
reporting back on?
|
46,609 | 345 | QUESTION:
27
November '84, that's right. We've made
reference to a not
e
of that meeting which Dr McClelland
believes he prepared, although I
think
it's
not
very
84
clear from the
document
itself
he
prepared it, but
Dr McClelland believe
s
he prepared that document,
which
recorded that he could get no clear picture of when or
how a serviceable assay would be provided
so suggests
a good deal of uncertainty at this time about the timing
of
the
introduction, the timing of the introduction for
this screening test, and just in this document, there'd
been unanimous agreement to test all donors
once
an
antibody
test
was available, a matter of how to c
ouns
el
and take care of antibody positive donors was
acknowledged to be a very difficult
problem.
All of those documents together appear to suggest
the Department's officials being aware that work was
ongoing to introduce a test but a good deal of
uncertainty about when the screening test that could be
used to screen blood donations and
,
in particular
,
for
routine screening of blood donations would be available
,
so that's late 1984
.
We get into January and February 1985
,
so
January 1985 is when a copy of the DHSS submission is
provided to officials in the Home and Health Department
and we can then see how that -- the contents of that
submission and developmen
ts
in England and Wales are
discussed by officials in the Department.
If we could go, please, first to PRSE0001054.
21 September 2022
85
Now
,
this another minute from Mr Davies, dated
7 February 1985, to Dr Scott
,
copied to a number of
other officials in the Department.
It
begins with the following:
"DHSS Ministers have now agreed
[
and added in
man
u
script
'(
apparently with great reluctance
)
'] that
all
donations of blood in England should be tested for
the presence of antibodies to
HTLV
III
. We now have to
decide whether we have any
alternative to advising
our
Ministers that it is necessary to follow suit in
Scotland.
"
There are over
[
a quarter of a million
]
donations
of blood in Scotland each year. As far as we are aware,
only one destination to date has contained antibodies to
HTLV III. We now require a signed statement from all
potential donors that
they are
not in one of the at
risk
categories for contracting AIDS. Hence the number of
'
infected
'
donations
,
already vanishingly small
,
should
decrease still further."
There's then reference to some guidelines prepared
by the A
DCP
, and then
,
staying in the same paragraph:
"Haemophiliacs in Scotland are now not at risk
" --
I think that should say
"
at all
"
-- I'm so sorry
it's right as it is:
"
Haemophiliacs in Scotland are now not at risk as
86
all Factor VIII is heat treated
--
the situation in
England is different. In any case, only a proportion of
those with antibodies develop AIDS.
I have
seen figures
ranging from 10% down to one, several hundred."
There's some discussion in the next paragraph of
the implications of introducing a routine screening test
for blood donors. Reference to any test inevitably
being imprecise, problems created by false positives,
suggestion there may always also be false negatives.
The next paragraph, if I can summarise, deals with
the potential financial implications of introducing
a screening test as they were understood this time. In
the middle of this paragraph, Mr Davies said:
"I have discussed the problem with Mr Robertson
[
who is in the finance department
]
, and though the
financial angle cannot be ignored, we are both agreed
that it should not be the determining factor in this
case."
In the final paragraph
,
the first sentence:
"It seems to me that the balance of rational
argument would be heavily against introducing a test on
all donations
. I accept
, however, that
there is
little
rationality to be seen where AIDS is concerned."
So that's the view of Mr Davies in February 1985.
I'm going to briefly turn to Dr Scott's response
87
to this minute
.
PRSE0003846.
In the first paragraph Dr
Scott
says that
Mr Davies's minute summarised clearly and succinctly the
problems associate
d
with the routine testing of all
donations of blood for
HTLV-III
,
and then the third
paragraph:
"From a cold objective scientific viewpoint the
case for the introduction of a test for
HTLV-III
antibodies in the present state of development and
without being properly validated is not
clear cut
.
There
is
no
doubt, however, that there is a lot of
public interest and we are liable to be carried along on
the rising tide of the motion.
We are
in a particular
only difficult situation in that DHSS ministers have
agreed, however reluctantly, to the introduction of the
test. It is most unfortunate that a policy decision on
this matter is not made at a UK level, though
understandable, given the degree of public and media
hysteria."
Further
down the page,
just the first sentence of
the penultimate paragraph, Dr Scott says:
"
in the end I think we shall have to put up a full
submissions to Ministers, pointing out the issues as
summarised in your minute and the
distortion of
88
priorities that
will
arise
,
though in the end saying we
doubt if they have an option."
Sir,
one example here
,
as well as the issues
particular to
HTLV-III
screening, one example of how the
relationship between decisions taken by the DHSS and the
SHHD may have played out, a suggestion here from
Dr Scott that it was going to be necessary for Scotland
to follow a decision which had been taken in England and
Wales
.
There's a further response to Mr Davies's minute
,
which I'm not going to bring up
,
from Mr Macpherson on
11 February 1985
.
It makes similar points. Accepts
a lot of what Mr Davies says and then comments:
"
...
I very much doubt if we can hold this line
now that English blood donations are being tested."
Comments:
"...
the pressure on us to follow the English
example will be irresistible
.
"
The following month
, on
21 March 1985
, after
work
by medical administrative officials took place on the
preparation of the submission
, it goes to the Minister.
We'll turn to that now.
It's
PRSE00004593.
Now
,
the date of this is 21 March 1985. It's from
Mr Macpherson in the Department
.
It's addressed to both
21 September 2022
89
the private secretary
,
to Mr MacKay
,
and to the
Secretary of State, headed "
(
AIDS
)".
It covers two
broad issues, the first is notification of AIDS.
I'm not going to look at that issue any further.
If we go through to the next page, please, to the bottom
half of the page, the heading that begins
"Blood
Transfusion
",
there's reference to some of the
background to this submission in paragraph 6, in
particular reference to the Edinburgh patients,
reference to the introduction of heat treatment in
Scotland.
In paragraph 7, some more detail on tests.
Mr Macpherson wrote:
"Tests are becoming commercially available for the
screening of blood donations for the presence of
HTLV III
antibodies. The first of these tests
,
from the
USA
,
was marketed in the UK at the beginning of March.
DHSS Ministers have agreed in principle that
,
in
England
,
all blood donations should be screened and that
Regional Health Authorities should meet the cost of
this."
There's then reference to an article that appeared
in The Lancet from Professor Cash and others, supporting
the introduction of
HTLV-III
screening, but on the basis
that it took place after evaluation of tests before they
90
could be introduced for routine screening of blood.
Over the page
--
this is a long document, sir, so
I'm going to --
so
I'm not going to go through all of it
here unless that would assist. But what we see in the
first few paragraphs of this page
,
the submission
developing first of all by describing the risk as it was
understood by officials at the time, some of which
reflects the minute from Mr Davies that we
saw
earlier.
Mr Macpherson
wrote
:
"As noted above
,
all Scottish Factor VIII [in
paragraph 8] is
heat
treated
;
the risk from ordinary
blood transfusions is believed to be very small
;
as far
as is known
,
in Scotland where 280,000 donations are
collected each year
, there
has
only been one infected
donation
of blood
(
the one which contaminated the batch
Factor
VIII); there is other evidence that blood donated
in Scotland is 'clean'; and donors are
now required
before giving blood to sign a statement that they are
not in a group at risk of contracting AIDS."
In the next paragraph a description of what was
understood at this time about the screening tests
themselves and some of their drawbacks
,
in particular
the higher rate of false positive rates may be 4%. An
unpredictable false negative rate.
In the next paragraph
,
some discussion of the
91
financial implications, though again in the middle of
paragraph 10 the point is made:
"Nevertheless
,
we should not wish to stand in the
way of testing solely on financial grounds."
In paragraph 11
,
a description of what was
understood to be a potential problem
,
which is at-risk
individuals presenting themselves to the Blood
Transfusion Service in order to have their blood tested
and the
need to set up alternative testing facilities
for such individuals
.
Then finally in paragraph 12
,
the conclusion and
the recommendation:
"
No
doubt there will be public pressure for
routine screening of blood donations
once
it is
known
that commercial tests are readily available. However,
having regard to
:
"
(a) the limitations of currently available tests
;
"(b)
the disproportionate effect of
a
high
rate of
false positive findings
;
and
"(c)
the need to provide alternative screening
facilities to divert
'at risk'
individuals from the
Blood Transfusion Service
,
"
we recommend the adoption of a phased policy
leading to the routine screening of blood donors
,
which
would take into
account
a comparative evaluation of the
92
tests available
,
the need for ready access to testing
facilities
out
with the transfusion service
and
a recognition of the considerable requirement for
additional testing, monitoring and counselling of donors
with positive tests. We should be glad to go whether
Ministers agree that we should proceed in this way."
So
that
was
how this issue was put to
Scottish Office Ministers
on
21 March 1985 and how the
evaluation programme was described.
At this point, sir, I'm going to try to answer the
question that you asked me earlier
,
which came about in
the context of the statement from Alexander Murray.
It may be helpful if we quickly go back to that
statement
,
PRSE0002440
,
then to page 4.
Thank you.
The sentence:
"I believe the Scottish Ministers were told about
the evaluation programme at this stage. Mr Macpherson's
submission [then a reference given is] refers to this."
Now
, from
the preceding paragraphs of Mr Murray's
statement
,
it looks like
he's
referring to a period
around 21 February 1985
.
The submission
he's
referring
to here
for
Mr Macpherson
is
the one that we just looked
at
,
21 March 1985
.
So when Mr Murray referred to
Scottish Ministers being
"
told about the evaluation
21 September 2022
93
programme at this stage
"
, this appears to be referring
to the period leading up and to around 21 March 1985
,
at
least some time between 21 February and 21 March.
So I hope that assists with the question from this
morning.
ANSWER:
Thank you.
|
46,610 | 345 | QUESTION:
Very briefly
,
the response from Mr MacKay to
Mr Macpherson's submission, PRSE0000850.
Sir, not the
easiest
document to decipher
immediately. The date of this is 22 March 1985. We get
that
from about the middle
of
this page. It refers at
the bottom to Mr Macpherson's minute of 21 March
,
and
includes comments from the Minister. He said:
"I fully appreciate the logic of this advice,
especially the danger that
'at risk' men
may use the
transfusion service as a screen, and as the test is not
absolutely reliable
some blood may enter the system
which is infected. Whatever we do on the BTS,
recommendation 12
(
c
)
is essential
."
Recommendation 12
(
c
)
related
to
the
need to
introduce alternative testing facilities for at-risk
individuals.
The Minister added:
"Also we do have to keep in line or ahead of
England
,
otherwise we will be subject to very severe
94
criticism."
Sir
,
I note the time. We're getting close to
one o'clock and we started a bit earlier than we might
otherwise have. I have a relatively small amount left
on
HTLV-III
screening and I'm hoping to speed up
a little bit as I move through the remaining topics
I hope to cover
today
. Would it perhaps be a convenient
moment for a break now, and we can pick up the end of
HTLV-III screening after the break? There are --
ANSWER:
Roughly how much more
have
you
got to
do on HTLV screening? Roughly
.
|
46,611 | 345 | QUESTION:
Roughly
,
I would say about ten minutes or so,
I'd hope.
ANSWER:
Right,
okay
. Let's do that at
2.00
,
shall we
?
|
46,612 | 345 | QUESTION:
Thank you, sir
.
ANSWER:
So 2.00.
(12.58 pm)
(The Luncheon Adjournment)
(2.00 pm)
|
46,613 | 345 | QUESTION:
Sir
,
the last document
we looked
at
on the
introduction of HTLV-III screening was from March 1985
and it was that ministerial submission. I'm going to
move forward to late June 1985
,
when a further update,
95
albeit a brief one, was provided to the Minister
.
We can see that in the following document
,
SCGV0001146_042
.
20 June 1985
,
again from Mr Davies to the Private
Secretary to Mr MacKay. We can see from the first
paragraph that it's prompted by a recent DHSS press
notice in response to an article
:
"
Mr MacKay will wish to see the attached DHSS
Press Notice
.
It was
issued
yesterday in order to
refute
a report in the Guardian that one particular test
[
for HTLV-III screening
]
had already been chosen and was
about to introduced."
And in the second paragraph:
"The SNBTS are taking steps to ensure that the
test will be introduced in Scotland as quickly as
possible,
once
the evaluations have been completed and
facilities for suitable confirmatory tested are
available
.
We are not convinced that the DHSS timetable
is achievable
,
but the intention is that routine testing
should start at the same time throughout the
United Kingdom."
Now
,
I don't need to go to the press notice but
,
as
a
summary
,
on the timetable, what it says in the
press notice is that the DHSS hopes to introduce routine
screening in four to five months' time.
96
So that will take us to about October/November
.
And that's what Mr Davies appears to be suggesting might
not be achievable, and then the final important point to
pick up from this document is:
"
...
the intention
...
that routine testing should
start at the same time throughout the United Kingdom."
The following months show that SNBTS and
SHHD
officials began discussing and referring to
an
anticipated start date for screening of October 1985.
There are also further repeated references in the
documents to the simultaneous introduction of screening
throughout the United Kingdom.
In terms of ministerial involvement, and to round
off the picture on this topic, I'm going to move forward
to 20 September 1985
with
one more document
,
PRSE0001516
.
This a further submission to the Minister copied
to the Secretary of State. It's dated 20 September 1985
and it comes from Mr Liddle. It addresses a number of
different topics relate
d
to AIDS. The one which is of
interest to us is over the page under the heading
"
Blood Tests
"
,
paragraph 6
.
I'm not going to go through
the whole of this paragraph
.
I'd highlight the first
sentence in particular
.
It says:
"Since AIDS can be transmitted through transfusion
21 September 2022
97
of blood or blood products from an infected donor,
arrangements
have been made
to screen all
blood
donations as from mid
October."
There is then mention of
alternative testing
facilities, confirmatory
testing
facilities
,
and
funding
, and
then the final sentence in this paragraph:
"The commercially available test kits for the
detection of
HTLV-III
antibody have been evaluated by
a pan
el
of experts from the Public Health Laboratory
Service on behalf of the DHSS and we have made a summary
of the results
available to Health Boards."
Now
,
that would appear to be the key documents
during the course of 1985 that seek to involve ministers
in these decisions and to inform them both
that
an
evaluation programme were to take place, the anticipated
timing of the introduction of HTLV-III screening, and
that it was intended for screening to be introduced
throughout the United Kingdom simultaneously.
Now
,
a press release was
sub
sequently issued on
the introduction of screening from mid-October 1985.
We've summarised its contents in the written note.
A bit faster than ten minutes in the end sir, but
that was all I inten
d
to cover on the HTLV-III
screening
,
and I am going to move on to a new topic now,
which is the Department's knowledge of and response to
98
the risk of non-A,
non-B hepatitis, and hepatitis C.
Now
,
the Inquiry has previously heard
a significant amount of evidence on these areas,
particularly on surrogate screening, that includes the
evidence of Dr McClelland, it also includes the evidence
of witnesses like Mr Macniven. I am not going to cover
surrogate screening in a great deal of detail. I'm
going to attempt to highlight in particular documents
that relate to the Department's understanding of the
risks posed by non-A,
non-B hepatitis, dividing the
period up roughly to pre-1986 and post-1986.
I start with pre-1986
.
Relatively little evidence is available in the
documents on the Department's understanding of non-A,
non-B hepatitis before that period, about the mid-1980s.
Most of the available documents relate to officials
attending meetings or working groups.
One example that we've highlighted in the note is
from 6 March 1980
.
It's a meeting of the re
convened
advisory group on hepatitis B testing, that meeting was
attended by Dr Bell
.
During the course of it there was
reference made to work by the Medical Research Council
on non-A,
non-B hepatitis. The minutes record that:
"Members were concerned about the
incidence
of
non-A,
non-B hepatitis and the possibility that new
99
viruses were perhaps being introduced through the use of
commercial blood products
,
namely Factor VIII and
Factor IX."
So linking non-A,
non-B hepatitis to factor
concentrates
.
The minutes add that
:
"Members agree that the hazard from
non-A, non-B hepatitis should now be recognised and
brought to the attention of the appropriate departmental
bodies responsible for control of hepatitis."
The following year, 1981, another meeting
highlighted in the written note which took place on
25 June 1981, there was a meeting of the MRC's Blood
Transfusion Research Committee attended by Dr Bell.
During that meeting, Dr Gunson described the work of the
Working Party on Post-transfusion Hepatitis.
The minutes record that Dr Gunson reported that
reach was being carried out into identifying the agents
of non-A,
non-B hepatitis
,
that that was complex
research
.
And perhaps significantly, Dr Gunson noted
during that meeting that
:
"
...
large
-
pool blood products were especially
likely to cause liver damage in haemophiliacs."
One more document from the first half of the 1980s
that I would highlight is from 23
May 1984
.
It's from
100
Dr Bell to Mr Murray, so an internal departmental
document. It's about funding for heat treatment of
Factor VIII at PFC
,
and it will probably be
easiest
if
I
bring it
up
.
It's PRSE0004029.
As we can see
,
it's a minute from Dr Bell to
Mr Murray, May 1984
,
and if we go into the second
paragraph, which is in the context of an application for
funding for heat treatment, Dr Bell said:
"At present nearly all
'
virgin
'
(
newly
-
treated
)
haemophiliacs
become
infected with
non-A, non-B hepatitis, though not usually of dramatic
severity. About 40% show evidence of infection by
hepatitis B. The longer term effects of such infection
in haemophiliacs is not known with certainty because
until relatively recent years haemophiliacs had little
prospect of living into middle or old age. However
a significant proportion of 'normal' patients infected
with hepatitis B go on to suffer severe liver impairment
which, apart from the personal aspect, makes significant
demands on health care resources."
Now
,
that's referring both to impact from
hepatitis B and non-A,
non-B hepatitis. I flag it as
one of the documents we have
,
which are relatively few
,
providing insight into the Department's understanding of
21 September 2022
101
non-A,
non-B hepatitis in the first half of the 1980s.
From around late 1985, the evidence we have
relating to this issue becomes closely linked to the
question of whether or not surrogate screening for
non-A,
non-B hepatitis and surrogate screening of blood
donors should be introduced in Scotland.
We're finished with that document
,
thanks.
The official at the Department who seems to have
been most involved with this topic was Dr Forrester
.
Dr Forrester replaced Dr Bell in 1985.
In March 1986, Dr Forrester attended an
SNBTS
directors meeting at which this issue, the
possibility of surrogate screening for non-A,
non-B hepatitis, was discussed. He prepared a note of
the meeting for his departmental colleagues,
sent
it to
Dr McIntyre and Dr Scott shortly afterwards.
I should say that Dr Forrester's notes of
meetings
,
such as this one of SNBTS directors
,
often
provide useful insight into his thinking around this
issue in the years that
we're
looking at. I won't go
into the document, this one, but I'm going to go to some
later ones.
In this one, which is from March 1986,
Dr Forrester described non-A,
non-B hepatitis as
a medley of conditions.
102
He wrote that:
"
...
any additional test
[
like surrogate
screening
]
...
must necessarily be non-specific and
could
well
prove expensive
...
"
He said that he'd made further enquiries and
discovered that the number of cases of non-A,
non-B hepatitis due to blood transfusion in Scotland was
probably exceedingly low.
He referred to a PhD thesis, and we'll come on in
a moment to which thesis that was.
He also reported that
it had
been argued by
directors at the meeting that urgent action was required
with respect to surrogate screening for non-A,
non-B hepatitis
,
and that the case was comparable with
that of AIDS.
Dr Forrester said that he challenged this
comparison on the basis that the steps taken to deal
with AIDS were taken in a face of a rapidly rising
inciden
ce
whereas the inciden
ce
of non-A,
non-B hepatitis as far as he knew, was small and steady.
He said there was
no
justification for panic measures
and that there might be a justification for research,
rather than what he described as panic measures
.
Now
,
the thesis referred to by Dr Forrester was by
Dr Dow,
and
was
earned
at the University of Glasgow
103
in
1985. It relate
d
to research into non-A,
non-B
hepatitis
in the West of Scotland under the supervision
of Dr Mitchell and Dr Follett
,
and Dr Forrester obtained
a copy of that thesis.
W
e can see how it informs Dr
Forrester's
understanding of non-A,
non-B hepatitis in a document
from June 1986
.
I'm going to go to that now.
It's PRSE0000857.
Now
,
this
document is dated 12 June 1986. It's
a note prepared by Dr Forrester
titled
:
"Transmission of non-A, non-B hepatitis by blood
and blood products
:
is it practicable to reduce or
prevent it by introducing ALT testing of donations?"
ALT testing of donations
,
I'm sure that everyone
who has followed the Inquiry will be familiar with
,
is
one of the methods by which you carry out the surrogate
screening for non-A,
non-B hepatitis.
Now
,
in the first paragraph Dr Forrester recorded
.
"
1.
The information in this note is
mostly
derived from the
PhD
thesis entitled
:
'Non-A, non-B Hepatitis in the West Scotland
',
completed
in
1985
by Dr B
C
Dow
under the supervision of Dr Follett
and others."
If we look at paragraph
4
,
we
can see
Dr Forrester's description of non-A,
non-B hepatitis.
104
He says:
"
...
it is not uncommon in the population
..."
The
suggestion of an
incidence
in Scotland of 184
cases per year
,
but a suggestion that might not be
a reliable figure.
"It is common among drug
-
abusers
.
"
And then:
"
But
in association with blood transfusion it is
very uncommon in the west of Scotland. Over the last
8
years
, 1-5
cases are found each year there
,
and there
is
no
upward trend. There are peculiar difficulties in
identifying its presence in haemophiliacs since their
blood exhibits diverse reactions because of repeated
administration of blood products, but
Dr
Dow found
no
evidence of any substantial problem. Dr Dow recons that
the proportion of donations infected with
non-A, non-B hepatitis may be 18 per hundred thousand."
He goes on to discuss the merits of surrogate
screening before concluding in the last paragraph that
Dr Dan Reid and Dr Follett do not recommend the
introduction of ALT testing of Scottish blood donations,
for reasons he describes in the note.
Now
,
over the months that followed and during
further meetings attended by departmental officials,
there appears to have been an increasing emphasis on the
21 September 2022
105
need to carry out further research before additional
consideration
could
be given to whether or not to
introduce surrogate screening.
This issue was also
considered
in Scotland
alongside consideration elsewhere,
for example,
in the
reconvened UK Working Party on Transfusion Associated
Hepatitis.
We can see Dr Forrester referring to some of these
issues in January 1987 at PRSE0001376.
Now
,
this is dated 26 January 1987
.
We can see at
the top
its
title
,
"Material for PMO Report"
.
This morning I
described
one of the means by which
Dr Macdonald said that the
C
MO and DCMO were kept up to
date with what was happening amongst medical officials
in the Department, described monthly PMO reports. We
don't have those reports but this
look
s
like
a contribution to one such report prepared by
Dr Forrester.
If we go down to the second half of this document,
at
paragraph 2
:
"Blood transfusion and non-A, non-B Hepatitis
(Dr Forrester)"
This is how he describes the condition:
"This
'
hepatitis
'
is a residual rag-bag when
Hepatitis B and Hepatitis A are excluded
,
and
106
consequently
no
specific test can detect it. It is
relatively benign. But US blood banks have noted that
the combination of a
liver
function test and a test for
the core
(
not the surface) antigen of Hepatitis B
distinguishes perhaps a third blood donations which
would convey non-A, non-B
'
Hepatitis
'
and allows them to
be excluded. Exclusion
is
far from complete
,
and
besides, some 2% of 'innocent'
donations may also be
excluded
.
"Nevertheless, US blood banks are evidently about
to adopt this pair of tests and shoulder the expense.
Here
,
it is intended instead to enquire into the number
of relevant donations and the characteristics of the
donor, before taking any further step."
So now
no
doubt you may wish to consider and hear
submissions on the characterisation of non-A,
non-B
hepatitis
that we see in this document
in particular,
the
suggestion that it's relatively benign and how that
falls to be considered alongside all of the other
evidence the Inquiry has heard about non-A,
non-B hepatitis.
The final sentence I've highlighted here picks up
the view that further research needed to be undertaken
before any decisions could be made about the
introduction of surrogate screening. So that's
107
January 1987.
In March 1987,
on
3
March of that year, a meeting
of SNBTS directors took place. It was attended by
Dr Forrester. The minutes of that meeting record that
the directors
,
following a discussion, decided to
recommend to the SHHD that non-A,
non-B surrogate
screening should be introduced in Scotland
.
I won't go
to the minutes
today
but what they record is the
following recommendation:
"To recommend to the SHHD that surrogate testing
for
[
non-A, non-B
]
should be implemented with effect
from 1
April 1988 as a national development requiring
strictly new funding."
That was a meeting attended by Dr Forrester.
Dr McIntyre picked up on this recommendation in
a minute to departmental colleagues on 6 April 1987.
I won't go to the document but he summarises the
background. Dr McIntyre wrote that
in the USA
:
"...
largely one suspects because of the fear of
litigation, there
has
been a great deal of pressure to
introduce this indirect screening for
'
Non-A, Non-B Hepatitis
'
...
we understand this is
likely to happen soon. A similar situation is said to
exist in Germany."
He added that the directors of the SNBTS were
108
"
unanimous
"
and that they were
"
pressing fairly
strongly
"
that this screening should be instituted in
Scotland
,
while adding that
the directors were
:
"...
perfectly aware
that it would be costly and
could not abolish transmission completely, they could
then claim to have taken all steps open to them to
reduce transmission. Before embarking on such an
expensive programme it would seem logical to participate
in
the proposed research [that was discussed elsewhere
in the document] and to delay any further action until
the results of this were known."
What we see around this time, and later into 1987
is some uncertainty around Scottish participation in
a proposed UK study of non-A,
non-B hepatitis. As well
as a concern in the Department that the SNBTS directors
might simply begin surrogate screening without direct
SHHD authorisation.
We move into 1988. By this point little progress
seems to have been made on the introduction of surrogate
screening, or on decisions about the introduction of
surrogate screening. Despite some of those departmental
fears, SNBTS directors did not in fact introduce
screening unilaterally.
By the time that we get to a 12 April 1988 meeting
of SNBTS directors, attended by Dr Forrester, there was
21 September 2022
109
a suggestion that directors were already undertaking
their own research on this issue leaving open the
possibility that they might introduce surrogate
screening in the future
,
and the minutes include the
following, and this passage is particularly relevant to
the relationship between decisions in Scotland and
decisions in the rest of the UK
:
"
...
it was confirmed that it had been agreed not
to introduce ALT testing in Scotland until it
had
become
UK
policy
, but
Directors wish
ed
to reserve their
position on this matter in the light of reports at the
commencement of ALT testing in at least one
[
England and
Wales
]
RTC."
Now
,
by the time we get to later in 198
8, the
question of whether to introduce surrogate screening for
non-A,
non-B hepatitis in Scotland became interlinked
with and was eventually overtaken by developments
related to the discovery of the hepatitis C virus, and
I'm going to turn to that issue now.
That was a fairly quick move through, sir, the
evidence that we have relating to
non-A, non-B hepatitis. There is, as ever, more detail
contained in the written note.
Now hepatitis C screening.
The chronology and our understanding of this
110
section might conveniently be thought of to begin with
the announcement in May 1988 that the
Chiron
Corporation
in the USA had discovered the non-A, non-B hepatitis
virus
,
which of course became known as hepatitis C
.
It appears that departmental officials became
aware of this discovery by at least June 1988 through
their attendance at meetings of SNBTS directors.
Soon
thereafter an important development in this
chronology is the creation around late 1988 and early
1989 of two Advisory Committees which worked at
UK
level: the Advisory Committee on the Virological
Safety of Blood, ACVSB, and the Advisory Committee on
Transfusion Transmitted Diseases, ACTTD.
Both of those
committees played an important role
in considering the introduction of hepatitis C
screening.
The written note makes brief reference to
their creation
.
Their deliberat
ions
have been
considered previously by the Inquiry. I'm only going to
refer very briefly to the outcome of some of their
meetings
.
A point to note for our purpose is that
departmental officials attended meetings of the ACVSB as
observers. It was usually Dr McIntyre who
attended
those meetings in this period. Officials don't seem to
have attended meetings of the ACTTD.
111
Now
,
as hepatitis
C
screening was considered by
officials in the Department from
early
1989
, one
of the
issues that emerges is the relationship between
a decision to be taken in Scotland on both the principle
and timing of the introduction of screening, and
decisions taken elsewhere in the UK. What we see in the
documents from 1989 are a number of references to
a UK-wide approach to the introduction of screening.
One example of that sort of reference is in an
August 1989 letter from Dr McIntyre to Professor Cash,
which made reference to the work of the ACVSB, and in
which Dr McIntyre wrote:
"If it is considered desirable to introduce
a further routine screening test for blood donors [ie,
the screening test] I understand that this will be done
simultaneously throughout the UK
--
as was done in the
case of the current HIV test."
I note that at this stage, that policy decision,
if it can be described in that way, didn't yet seem to
have been put to ministers in the Scottish Office.
I can turn to what seems to be the first time that
officials bring this issue to the attention of ministers
in the Scottish Office, in the summer o
f
1989.
It's the document at PRSE0000558
.
Now
,
this is a minute prepared by Mr Tucker
,
who
112
replaced Mr Macniven
as
Assistant Secretary in the HHD,
directed to Mr Forsyth
,
the Private Secretary to
Mr Forsyth. We can see what's prompted this document in
the first paragraph.
"This note is to advise the Minister about an
article in today's Guardian [attached is a copy]
...
which seems likely to prompt other media enquiries."
I note at this stage in parentheses, earlier on
this morning
we looked at Mr Murray's description of
some of the factors or circumstances which might lead to
ministers being updated or informed of
developments
, he
included media interest or media articles
,
and this
seems to be an example of that happening.
Now, Mr Tucker set out the background to this
issue in the first few paragraphs. I'm not going to go
through all of that now. I'm going to pick up in
paragraph 4 his description of the effect of infection
with hepatitis C.
"Only a minority of those infected with HP
C
[ie
hepatitis C
]
display any symptoms either in the
short or long term
...
"
It suggests that the way this point had been
described in The Guardian article was unnecessarily
alarmist.
Over the page, there's reference to the work of
21 September 2022
113
the ACVSB. In paragraph 7 Mr Tucker wrote that:
"The accuracy of the test for hepatitis C
has
not
been fully established
...
"
Describes further work which was considered to be
essential to be undertaken
.
And then finally, the line
to take.
"If asked to comment
it is
suggested that the
Minister uses the following:
"(a)
Donors should not be deterred from giving
blood."
It highlights entry (d):
"The prevalence of HP
C
in the population in this
country has not been established, nor has the role of
blood in its transmission."
Finally:
"This is a UK issue and D of H [Department of
Health] will be
taking
the lead but SHHD and SNBTS will
be represented in any meeting and the Minister will be
consulted before any decisions are taken."
Now
,
over subsequent months the introduction of
hepatitis C screening was
considered
at meetings
of
those two committees I mentioned earlier, ACVSB and
ACTTD
. The
Department
was
kept informed of their
deliberations
, in particular
from
Dr McIntyre's
attendance that the
ACVSB
meetings.
114
I've highlight
ed
one of those meetings
, it's
referred to in
the
note
,
on
1
7 January 1990
when the
minutes of the ACVSB record a general consensus that
routine testing should not be introduced in advance of
an FDA decision on whether to licence this particular
hepatitis C screening test. It was suggested that
scientifically
not enough is known yet about the
screening test to justify its introduction.
One more document involving ministers from around
this time
,
SCGV0000230_145.
Now
,
this is from
1
February 1990. It's a minute
to the Private Secretary to Mr Forsyth, copied to the
Secretary of State
.
As will be apparent from the title
it is primarily concerned with a different issue which
we'll co
me
back to later. If you go over -- sorry
,
not
over the page, to the bottom of this page, please.
There's discussion of challenges from a budgetary
perspective facing the Department and
,
in that context,
brief reference to the possible introduction of
hepatitis C screening
:
"
All budgets are likely to be very tight next
year
..."
The CSA budget was
described
as
:
"...
likely to come under severe pressure from
a
number of sources which were not foreseen at the time
115
of framing bids
for
[
the budget
]. (
Eg
the prospect of
a
two year settlement for pay of ambulance staff and the
introduction of routine blood testing for Hepatitis C
which is expected to
become
unavoidable following expert
advice that such testing should be introduced in order
to prevent the risk of future claims against the
Government similar to those now pending in respect of
haemophiliacs with HIV.)"
So that's February 1990. I'm going to move
forward to mid-1990
,
when officials in the Department
became aware that the FDA had approved hepatitis C
testing, had granted a licence for a screening test
.
In response to that, a meeting of the ACVSB was
brought forward. We can get some insight into
Dr McIntyre's view of that development in this document
.
It's PRSE0003099.
So this is a 6 June 1990
minute from Dr McIntyre
to Dr Young, copied to colleagues in the Department,
including Mr Tucker
,
headed "Hepatitis C Testing".
If we
zoom
in on the first half of the page,
Dr McIntyre reported:
"Things are moving very fast on the Hepatitis C
front. The FDA have now approved the Hepatitis C
antibody test. Until this approval was given in the
country in which the test originate
d
the Advisory
116
Committee on the Virological Safety of Blood was
reluctant to recommend
its
introduction in the
United Kingdom. It was agreed at the last meeting that
there should be a study to investigate the significance
of positive finding
using the ELISA Hepatitis C antibody
screening tests followed up with an extended study of
RIBA and PCR techniques."
We then can see the paragraph towards the bottom
of th
is
current view:
"I am in little doubt that for a variety of
reasons, many of them non-scientific, it will be decided
that there is
no
alternative but to recommend the
introduction of the test."
If we go down to the bottom of this page,
Mr Tucker -- sorry, not Mr Tucker, Dr McIntyre wrote:
"As you will remember
one of the problems in the
litigation in relation to HIV infection of haemophiliacs
is whether or not the HIV testing was introduced as
early as
was
possible. Although Hepatitis C is not such
a fatal condition as HIV infection litigation would be
possible if a patient was subsequently to determine that
he had been transfused with Hepatitis C positive
blood
--
or blood which had not been tested for
Hepatitis C antibodies. It is of course well known that
there are many patients who suffer from Hepatitis C who
21 September 2022
117
never have blood transfusions. The whole issue is
something of a minefield."
Now, the
ACVSB meeting which was brought forward
in response to the FDA announcement took place on
2
July 1990. It
was
attended by Dr McIntyre. As will
be familiar to the Inquiry, it was recommended, or
rather it was agreed at that meeting to recommend
hepatitis C screening to ministers after a pilot study
to determine whether one of two tests,
the
Ortho or the
Abbott test, was most suitable for use in Regional
Transfusion Centres
,
and the
estimated
time
scale
for
study was around four months
.
That's July 1990.
If we move forward to November 1990, Dr McIntyre
attends another meeting of the ACVSB. He prepares
a note of the meeting and circulates it to colleagues in
the Department. In that note there's some discussion of
possible start dates for hepatitis C screening.
Dr McIntyre's note of the meeting recorded that
some attendees wanted testing to start
forth
with, while
the Chair of the Committee was said to have suggested
that 1
April 1991 might be more realistic.
Dr McIntyre also suggested that the Department
should wait to receive a draft submission being prepared
by the Department of Health. So we see in
that
November 1990 note, reference to a possible start date,
118
1
April 1991.
Now
,
the DoH submission was finalised and put to
ministers in England and Wales on 21 December 1990
.
It
was copied to the SHHD. That submission recommended the
introduction of hepatitis C screening. It recorded that
other UK Health Ministers were being asked to approve
the introduction of screening in their transfusion
services. So that's December 1990
.
As we'll see, and
this is to jump ahead, the submission which went to
ministers in Scotland on this particular issue, and
addressing it directly, didn't go in until Ju
ly
1991.
So December 1990 the DoH submission is made. The
departmental officials in Scotland had
become
aware
of it by January 1991. They also became aware that
ministers in the Department of Health
had
given their
approval to the introduction of hepatitis C screening.
Officials in Scotland then began considering
a submission to their own ministers.
As I've said, that submission was not
eventually -- was not put in until July 1991. What we
see over the months between January 1991 and July 1991
is what appears to be an awareness amongst officials in
the Department of the start date, the proposed start
date
,
for routine screening of hepatitis C being pushed
back.
119
It seems that around late February 1991, following
an ACVSB meeting, officials in the Department came to
understand that
the
likely start date for screening was
being pushed back from 1 April to 1 July 1991.
It appears that by late March, they became aware
of a suggestion that that 1 July date might be pushed
back again. We can see an example of that in a letter
from Professor Cash
,
which is at PRSE0003692
,
dated
27 March 1991. It's a letter from Professor Cash to
Mr McIntosh
,
who I understand was
a
general manager of
the SNBTS at the time.
If we go over the page we can see the letter was
copied to Dr McIntyre in the Department.
Professor Cash wrote, and if we can go back to
page 1
,
please:
"You will want to know that our NBTS colleagues
are struggling
,
on a number of accounts
,
to meet the
1st
July deadline
,
as previously discussed and I thought
agreed. We believe the fundamental problem is one of
financial resourc
ing
.
"
At a meeting of the UK BTS Advisory Committee on
Transfusion Transmitted Diseases in Manchester [the
previous Monday
], the
following was agreed:
"
(a)
Harold Gunson would advise DoH that the
1st
July start date should be delayed until such time as
120
an evaluation of the new generation of HCV screening
tests had been complete
d
. If this is accepted it could
push a start date to September."
So
me
more material
, I know, sir,
related to these
developments and the introduction of new second
generation screening tests will have been
considered
by
the Inquiry previously. We can see here the officials
in the HHD becoming aware
--
being made aware of these
developments. I'm also going to try to decipher
,
in the
top right-hand corner
,
a manuscript note, which seems to
be between two officials in the HHD. I believe it
'
s
from
Mr Panton to Mr Hogg, dated 2 April 1991.
"This is worrying.
[
Please
]
speak to DoH. We
can't go to the Minister until we know the start date"
.
Now
,
a number of other documents which are
summarised in the written note suggest that officials in
the Department continue to monitor the position in the
Department of Health and developments in the ACVSB over
subsequent months. It became apparent that
the
start
date was in fact pushed back to 1 September 1991.
Now
,
the extent to which officials in the
Department considered proposing an earlier start date to
Scottish ministers is unclear from the available
documents. We have some evidence, some of which I've
just pointed to, of officials becoming aware of
21 September 2022
121
proposals and an agreement to push the start date back.
What we don't seem to have clearly from the
documents is the extent of any thinking about whether
officials should go to ministers in Scotland to say
,
"
The start dates have been pushed back, would you like
to make a decision about whether to introduce screening
earlier in Scotland than the rest of the UK?
"
We
,
in fact
,
have couple of documents from
July 1991 which suggest that Dr McIntyre thought it
might be possible that the start date would be pushed
back further from September 1991. We can see that in
a letter that Dr McIntyre wrote to Dr Metters to his
,
I
believe
,
DCMO in the Department of Health. The letter
was prompted by an article that had been published in
the British Medical Journal about sexual transmission of
hepatitis C
.
Dr McIntyre explained in the letter that
he thought that
might
lead to difficulties around
counselling of patients who tested positive for
hepatitis C, enquired whether that might have an effect
on the September start date and whether it might be
pushed back
.
I'm going to look at Dr Metters' response to that
letter. It's at PRSE0001103
,
so 11 July 1991, from
Dr Metters to Dr McIntyre.
I only need to summarise very briefly the contents
122
of the letter
in essence
towards the bottom of the page.
Dr Metters says that it was thought unlikely that this
recent article that had been published would have an
impact on the September 1991 start date
.
But if we go
up the page to the manuscript notes which seem to be
between officials in the Department, it says:
"We can now proceed with the Hep C submission
.
We
must get it up this week before Recess."
So it appears to suggest a belief that it was
necessary to get an answer to Dr McIntyre's letter
before finalising and putting a submission to ministers
in Scotland.
Now
,
that submission was finalised and put to
Mr Forsyth
,
as he then was
,
on 24 July 1991. I'm not
going to go
to
it
. It was considered in Lord Forsyth
's
evidence
.
The URN for those who would wish to have it to
hand is PRSE0004608.
That submission recommended that hepatitis C
testing of blood donations be introduced in Scotland
from 1 September 1991, after setting out some of the
arguments for and against screening.
Lord Forsyth accepted that recommendation,
asked
that
a press release be prepared to announce it. That
press release was issued by the Scottish Office on
123
2
September 1991
to announce the introduction of
hepatitis C screening in Scotland.
Now
,
again
, sir, I've
move
d
fairly quickly through
that
material. As ever
,
there's more in the written
note. That all I inten
d
to say for the moment about the
introduction of hepatitis C screening in Scotland.
The next topic which comes up for those following
using the written note is prisons. It's a very short
section
.
There's not a great deal in there. I'm going
to suggest that those who are interested
in reading more
about that topic look at the written note and I'm going
to move
to
a
final set of issues/topic for
today
:
compensation, litigation, and financial support.
Now
,
I can pick up the chronology on these issues
in early 1987, when the Department became aware of calls
for the Government to compensate haemophilia patients
who had been infected with HIV blood products.
The documents suggest that at this stage,
early
1987, officials in the Department were emphasising
the importance of following
,
at the very least having
regard to the DHSS position
,
following it closely.
I'm going to go to a document which shows how
officials put this issue to ministers in early 1987.
It's SCGV0000229_232.
Sorry, sir, if I could just have one moment to get
124
the document in my notes.
(Pause)
Sir, we can see the document is date
d
9 February 1987. It is addressed from Mr Lugton to the
Minister of State. At this time that Minister was
Lord Glenarthur. The minute describes correspondence
which had been received as part of a campaign to obtain
compensation for haemophiliacs infected with the AIDS
virus
via
contaminate
d
Factor VIII.
I
n
paragraph 2 I pick up the way in which that
infection is described
:
from supplies which were
unwittingly provided
be
for
e
treatment was introduced to
minimise the risk of Factor VIII containing the AIDS
virus.
Mr Lugton goes on to explain the reasons behind
the
Government position at the time
,
which was not to
accept calls for such compensation. We can see that at
the end of paragraph 3 where he says:
"Before compensation to haemophiliacs could be
seriously considered
,
therefore, it would have to be
clearly established that they were a unique group who
could be clearly distinguished from any other
victims of
drug mishaps or
other medical accidents."
It made some reference to
a
Pearson
report
of
1978
on no-fault compensation
,
and at paragraph 6 it says:
21 September 2022
125
"Against this background
,
we consider that the
Minister's replies should not hold out any hope of
a change of the Government's policy on this matter
...
"
It also makes reference to responses which had
been
sent
by Lady Trumpington in the Department of
Health.
Now
,
the written note describe
s
Lord Glenarthur's
response to this minute in which he asks for some
changes to be made to the draft replies which had been
prepared to these letters while
,
it seems
,
not
challenging the substantive policy decision which was to
refuse calls for
compensation
.
I'm going to move forward to autumn 1987
,
by which
time Lord Forsyth had
re
place
d
Lord Glenarthur as the
Minister in the Department with responsibility for
Health.
What we see in the documents is the SHHD position
being maintained, refusing calls for compensation with
officials in the Department monitoring developments at
the DHSS
.
As will be familiar to the Inquiry, the position
changed, at least to some extent, in November 198
7
, when
there was
no
acceptance that compensation was
appropriate, but a UK Government decision was taken to
make an ex gratia payment to haemophilia patients and
126
their families who had been infected with HIV.
Now, that decision was considered at a meeting of
the Subcommittee on AIDS of the Home and Social Affairs
Committee, H(A) Committee
,
on
10
November 1987, worth
noting that that was a meeting and a committee attended
by Malcolm Rifkind
,
who was at that time Secretary of
State for Scotland. So Mr Rifkind
,
as Secretary of
State for Scotland, was involved in the discussions and
the decision-making process that led to the announcement
of the ex gratia payment in November 1987.
The documents suggest that in
early 1988,
the
course of 1988, after this announcement was made,
officials in the Department had relatively little
involvement in the setting up of the Macfarlane Trust
which was to administer this ex gratia payment. That's
1988.
We're going to jump forward again to
November 1989, the reasons I'm jumping forward will
I hope
become
apparent. In November 1989,
Kenneth Clarke, the Minister in England and Wales,
announced that an additional ex gratia payment to the
Macfarlane Trust would be made. Part of the reason for
jumping forward in the way that I did is that decision
seems to have been taken without any consultation or
discussions with officials in the Scottish Office
so
,
127
effectively, November 1989, Scottish Office officials
and ministers learn that this decision had been taken.
There then followed discussion within the HHD and
with the Department of Health about whether the
Scottish Office should be required to contribute to the
funding of this additional payment, particularly given
that the Department
hadn't
been consulted at all
,
before
the decision was taken and announced
,
if it should be
asked to contribute, how much of the funding should it
be asked to provide
.
It was eventually agreed that the Scottish Office
should contribute
,
and that it should do so on the basis
of the proportion of haemophilia patients infected with
HIV from blood products who lived in Scotland.
Now
,
that agreement to contribute to this funding
was obtained by officials in the Department from
Lord
Forsyth in early February 1990, following
a submission which was put to the minister setting out
the background to the announcement, setting out the
discussions which had followed it about the Scottish
Office's contribution or potential contribution to the
funding, and we can see that Lord Forsyth accepted that
the Department should contribute to this additional
payment.
I'm moving
o
n now, sir, to the HIV Litigation.
128
Moving back slightly in time from November 1989
,
when the additional ex gratia payment was announced
,
to
1988, and the documents show that claims in the
HIV Litigation began to be lodged in the Scottish courts
against Scottish health boards, the SNBTS, and the
Secretary of State for Scotland.
Now
,
those three individuals and bodies referred
to in the Scottish litigation generally as defenders.
What we can see in the document summarised in the notes,
during the course of 1988, representatives from those
different defenders, so the Secretary of State, the
Health Boards, the SNBTS, met to discuss their responses
to the claims. The documents suggest that at this time
they
shared the view that the actions should be
defended.
In early 1989 the Health Minister in the
Department, Lord Forsyth, asked for an update on the
litigation in light of
a
newspaper
report. And I'll go
to that document
in which he was provided the update
now. It's SCGV0000229_052.
Sir, this is advice provided by Mr MacNiven to
Mr Forsyth. We can see that the article was prompted
by -- sorry
,
the advice was prompted by an article in
the Daily Record
,
January of that year, that said, "You
gave us AIDS". In response
to it
,
the Minister made
21 September 2022
129
a request for advice.
Mr MacNiven begins by summarising the background
and the nature of the claims. If we go down, we can see
that in paragraph 5
.
Paragraph 6
,
the number of claims
to date is outlined
.
Then in paragraph 7
,
at the
bottom, Mr MacNiven noted that the Department was
working with the Solicitor's Office to prepare defences
on behalf of the Secretary of State for keeping in touch
with the other defenders in the action. Then over the
page:
"Should the Minister be asked to comment on any of
these cases I would advise him to point to the
£10m
ex gratia payment
(
which was evidence
of the
Government's concern and sympathy for the plight of the
haemophiliacs infect
ed
with HIV
)
and to say that the
cases alleging negligence are a matter for the courts to
decide
.
"
In other words
,
reflecting the UK Government
position that compensation was not to be paid in
response to these claims.
Now
,
as we've seen
in
late 1989, the additional
payment to the Macfarlane Trust was announced without
any consultation with the Scottish Office
,
and then
during the course of 1990
,
the following year, officials
continued to monitor the Department of Health's position
130
on the HIV Litigation, particularly in light of their
experience with the announcement of the additional
payment to the Macfarlane Trust, to try to understand
the position of the Department of Health and the
possibility that any further payment might be made.
Now
,
there is some suggestion in the documents
that in early December 1990, the Scottish Office came to
believe that there was some possibility that a payment
might be made to settle the litigation. That's a brief
handwritten reference in some of the Scottish Office
SHHD documents we have rather than anything formal from
the Department of Health to the Scottish Office.
Then on 11 December 1990, the Prime Minister
announced, in response to a Parliamentary question, that
the Government had agreed in principle to settle the
HIV Litigation
.
Now
,
similarly
with
the announcement
of
the additional payments to the Macfarlane Trust,
the
Scottish Office does not
seem
to have had any
involvement in the negotiations leading to this
announcement. The documents indicate that this resulted
in difficulties for the Department's attempts to settle
the Scottish claims.
As well as Scottish Office officials expressing
their concern to other UK Government officials, the
131
documents show solicitors acting for the litigants in
Scotland expressing their dismay at being excluded from
the negotiations leading to this announcement
.
What
became clear was that negotiations had been taking place
in England and Wales between the lawyers,
the
litigants
there, and the Department's representatives. The
parties of the lawyers in Scotland
,
as well as the
officials
,
had been excluded from those negotiations.
We can see that dismay being expressed in a letter
from Mr Tyler
,
who worked at Balfour and Manson
solicitors
,
and who was also chair of the Scottish
Haemophilia HIV Litigation Group. That was an
association of Scottish firms representing individuals
in Scotland who were involved in the litigation.
One point to
note, my
understand
ing
here is that
the procedural
rules that applied in
Scotland at th
is
time didn't allow for a group litigation claim
,
as was
the case in England. Instead, you had
a
number of
different claims but which were coordinated through this
association of which Mr Tyler was the chair.
Now
,
from December 1990
,
after this announcement,
officials in the Scottish Office, both in the Department
and in other department
s,
like those in the Scottish
Legal Office, worked on preparing and negotiating
settlement terms for the Scottish claims. That involved
132
a number of challenges, and this is a trite point for
which I apologise, but
Scotland having a separate legal
system, it was not simply the case that the terms could
be proposed, agreed in England and Wales
,
and be
transposed to Scotland. Work had to be undertaken in
Scotland to make any potential settlement work there.
One of the key issues that became apparent in the
months that followed, so from December 1990
,
in the
first few months of 1991, was that additional time was
going to be necessary for this process to take place
and
,
in particular, for the lawyers representing the
Scottish litigants to be able to investigate their
clients' claims.
Issues related to funding for lawyers, the
availab
ility
of Legal Aid and other funding, meant the
re
had been relatively little investigation of the facts
underlying the claims. This was a point considered
internally by Scottish Office officials, discussed with
lawyers representing Scottish litigants. It became
apparent that it was going to be necessary for the
Scottish lawyers to have some additional time to those
in England and Wales to investigate and consider their
claims.
Now
,
this issue was addressed in a minute from
Mr Tucker to Mr Forsyth and the Secretary of State who
21 September 2022
133
at the time was Ian
Lang
. That minute came about
following a suggestion from Mr Forsyth that the
Department should try to move speedily towards
a settlement in Scotland. Mr Tucker described some
of
the factors I've just outlined,
and
suggested that
additional time be given for litigants in Scotland to
consider the possibility of settlement.
Now
,
in order for that to be possible, it was
suggested that ministers and
,
in fact
,
the Secretary of
State for Scotland get in touch with his counterpart in
England and Wales in order to ask for additional time
for litigants in Scotland.
We can go just briefly to a couple of documents
before the break on this issue
.
The first is DHSE0003660_009.
This is a letter dated 17 January 1991. It's from
the Secretary of State for Scotland, Mr Lang, to
William
Waldegrave
,
the Secretary of State for Health.
If we go down, we'll see in the first paragraph
the letter describes some of the
back
ground
to
the
recent agreement in principle that had been reached
in England and Wales to settle the litigation
.
Then
,
on to the next paragraph, the letter sets
out that there are separate Scottish legal
actions
for
compensation that
hadn't
progressed as far as the
134
English
claims
, that the Scottish lawyers concerned were
not represented on the Steering
Committee
and had not
been party to the preparation of the proposals nor
involved in the discussions which had taken place with
the Steering Committee
:
"
This ha
s
placed the Scottish Office in
a difficult position since all the discussions on the
details of the settlement
have
been in relation to the
English plaintiffs and
there
have already been
representations made to me by the Scottish lawyers that
they were not consult before the offer was made public.
They consider that they are not in a position to advise
their clients on acceptance or otherwise until they know
and can assess the contents of the offer and conditions
of acceptance
but also until they are fully investigated
their clients' claims."
That summarises some of the points I was just
trying to make.
If we move down to the bottom of this page, and on
to the next one, we see that the letter sets out
that
the Scottish lawyers
estimate that they would need some
additional time
,
over the page, to carry out the further
assessment of the acceptability of the proposals for the
settlement. Mr Lang proposes that a reasonable further
period be allowed to the lawyers in order for them to
135
consider the settlement offer.
If we go just briefly to Mr Waldegrave's reply,
which is at DHS
C
0003660_010
,
30 January 1991.
The letter records that a deadline of the
acceptance of the offer made in England and Wales
had
not yet been set. Down the page, the Secretary of
State
,
Mr Waldegrave
,
comments:
"...
I quite understand the difficulties you would
face in trying to complete
a
settlement in Scotland in
the same timescale
[
as has had been proposed in England
and Wales
]
. I have
no
objection
,
therefore
,
to your
proposal to set a reasonable period for Scottish
litigants to be
advised
by their lawyers
on
a response
to the offer."
Then in the next paragraph:
"While differences over timing are manageable,
I think that the terms to of the settlement must be the
same for all to avoid reopening the whole issue."
Then the bottom of this paragraph
,
the final
sentence:
"I hope, therefore, you will accept that the size
and categories of payment on offer must be com
m
on to all
litigants wherever they have pursued their action."
So an emphasis on the need for the nature of the
settlement
s
in Scotland and England and Wales to match,
136
even if some additional time might be needed in Scotland
as a result of the way that the compromise announcement
was made.
Sir, I note the time. I have a few -- a number of
further documents and
issues
to highlight in relation to
litigation, including one I prefaced right at the
beginning of
today
,
this morning, the question of the
waiver which applied in Scotland as against the waive
r
which applied in England and Wales. I wonder if it
might be a convenient moment
.
ANSWER:
Well
, let's take a break
then
until
3.45
. 3.45.
(3.14 pm)
(A short break)
(3.45 pm)
|
46,614 | 345 | QUESTION:
Sir, I'm going to continue with documents
relating to the HIV Litigation in Scotland and I'm going
to pick matters up shortly after the correspondence we
looked at before the break, a minute dated
8 February 1991 from Mr Tucker to the Private Secretary
to the Secretary of State.
The reference is SCGV0000232_110.
Now
,
we can see in paragraph 1 of this document
that
Mr Tucker made reference to the correspondence we
21 September 2022
137
looked at a little bit earlier.
In paragraph 2, I just want to pick up a few
points in the first part of this paragraph.
Mr Tucker wrote:
"The Secretary of State for Health seeks assurance
however
that the terms of settlement in relation to the
size and categories of payments must be com
m
on to all
litigants and we can readily give this assurance."
So making the point that the
size, the
category of
payment for litigants in Scotland should be the same as
that in England and Wales
.
"On the matter of informal soundings, Solicitor's
Office has already shown a draft settlement
adjusted
to
reflect the Scottish legal situation to the solicitors
representing the main group of Scottish litigants. But
the main difficulty to a speedy conclusion of the
consideration of the offer, and consequently the reason
for a more protracted timescale in Scotland, lies in the
investigative work which Scottish solicitors require to
undertake if they are to be in a position to give advice
to their clients as to the merits of settlement. In the
vast majority of cases Scottish solicitors are unable to
undertake that work until legal aid has been granted."
Then some more detail on how that problem might be
overcome, concluding with a recommendation at the bottom
138
of this paragraph that an additional three months be
offered to litigants in Scotland.
So we can see there officials agreeing that
effectively the settlement, at least in terms of size
and categories of payment
,
should be the same in
Scotland as in England and Wales, r
eferring
to some of
the reasons that I out
lined
earlier for why more time
might be needed in Scotland, and also
referring
to draft
settlement terms having been shown by Scottish Office
solicitors and lawyers involved to
those
representing
litigants in Scotland
,
so that's February 1991.
Over the months that follow
,
and I'm going to
start by going up to May 1991, there are a series of
letters, meetings going back and forth between officials
in the Scottish Office and officials in the Department
of Health, and also lawyers representing Scottish
litigants
,
on the terms of settlement in Scotland
,
negotiations over their terms and liaising between the
two departments about what the settlement terms sh
ould
look like and how they should be framed exactly in their
detail
.
In the addendum notes that the Inquiry is going to
provide to Core Participants as quickly as we can, we
are going to attempt to trace the back and forth of some
of that correspondence over the months with an eye
,
in
139
particular
,
to developments which relate to the question
of a waiver for those who agreed to the settlement
terms. This waiver issue related to an undertaking that
litigants were asked to give
.
In order to get the
benefit of the settlement, the undertaking was to
effectively give up the right to bring a further claim
against the different defendant
s
or defenders to these
actions arising from infection with blood products,
Factor VIII and Factor IX
.
Now, the particular issue that we're concerned
with was whether that undertaking was supposed to or was
intended to and did waive litigants' rights to future
claims concerning only infection with HIV or also
infection with hepatitis.
Now
,
the detail of the correspondence and the
draft
s
of terms and drafts of declaration of trust for
the Macfarlane Trust
No
2 that's eventually declared is
going to come in the note. For the purposes of
today
,
I can pick up the chronology on 3 May 1991 with
a declaration of trust for the Macfarlane (Special
Payments) (No 2) Trust.
That is at MACF0000083_004. We have a date at the
top, 3 May 1991
:
"
Declaration of Trust
Constituting
140
"
The Macfarlane (Special Payments) (No 2) Trust
"
Now
,
this is the document which reflects
compromise reached in England and Wales for the
HIV Litigation. At the time that this trust deed was
executed, negotiations over the Scottish settlement were
still ongoing and some of the contents of this document
reflect that.
Before I go to the parts of it that relate to
Scotland
,
I just want to pick up on page 22, please
.
This was the undertaking to be given by litigants
in England and Wales. We don't need to go through all
of the technical detail. What we can see is that what
this undertaking required is to undertake that
:
"
...
I will not at any time hereafter bring any
proceedings against the Department of Health
,
the
Welsh Office
[
various other defendants] or any other
Government body [and this
is
towards the bottom of this
passage] involving any allegations concerning the spread
of the human immuno
-
deficiency virus or hepatitis
viruses through Factor VIII
or Factor IX
(
whether
cryoprecipitate or concentrate
)
administered before
13th December 1990."
So an undertaking that appears to cover both
future claims relating to HIV and hepatitis viruses.
If we go, please, first to page 24. We don't need
21 September 2022
141
to go to the detail of these pages but this is
a schedule 3
,
which modifies some of the provisions of
the trust deeds so that they can apply to the
settlements. In Scotland they cover a number of
particular issues. If we could go to page 27,
schedule
4
, an undertaking to be given --
ANSWER:
Just go back for a moment to
schedule
3, please.
|
46,615 | 345 | QUESTION:
Of course.
Back to page 24, please.
ANSWER:
Thank you.
Thank you
.
|
46,616 | 345 | QUESTION:
And if we go back to page 27, please,
Lawrence,
schedule 4
.
Here we have the undertaking to be given by
a qualifying person in Scotland to receive payment from
this Trust.
The second half of the page, please. I won't go
through all the detail but I'm going to pick out few
references. Paragraph 1:
"I hereby discharge the said Secretary of State
[the Secretary of State for Scotland]
and
all other
Ministers
[
different defenders]
...
from any liability
they may have in respect of the infection of
[
X person
]
with human
immunodeficiency virus or hepatitis virus
es,
142
alleging arising out of treatments before
13th December 1990 with Factor VIII or
Factor IX ..."
This document continues over the page with
references made at various points to both HIV and
hepatitis
,
for example we can see that in paragraph 4.
"I undertake not to bring any proceedings against
the Crown or any health service body now or at any time
in the future
in
respect
of infection
...
by
[
HIV
]
or
hepatitis viruses."
So what we appear to have here is it being
envisaged that in Scotland, as in England and Wales,
there will be an undertaking to waive
the
right
to
bring
future claims and that waiver will cover both hepatitis
and HIV.
ANSWER:
Just one question about it.
|
46,617 | 345 | QUESTION:
Yes
.
ANSWER:
The waiver, so far as it related to
England and Northern Ireland, et cetera, was a waiver
which in terms, as I read it on the screen, that the
proceedings were not related to the spread of or
spreading of HIV or hepatitis viruses. This is rather
different because it doesn't mention the words "spread"
or "spreading
";
it does means the infection of somebody
,
which I think the first part of the first waiver
doesn't. Am I right in that distinction?
143
|
46,618 | 345 | QUESTION:
Sir,
you're right that on their face those two
different versions of this waiver
...
ANSWER:
Yes, so
you say this waiver, there are
two different waivers. They may come to the same effect
but the one is in respect of the spreading of
,
any
allegation about the spread of, which is peculiarly
vague, and -- or might be thought to be -- and this one,
which is much more specific to the individual, which is
the infection
,
presumably of the individual, that's the
blank, by HIV or hepatitis. Does anything turn upon
that distinction or do you want time to consider that?
|
46,619 | 345 | QUESTION:
Time to consider it, sir
.
ANSWER:
Thank you
.
|
46,620 | 345 | QUESTION:
That sounds to me like one of the issues which
should and could sensibly be addressed in the addendum
notes that we are intending to disclose
.
Looking at
those differences in the wording of these waivers, the
extent to which their legal effect changed as a result
of that different wording,
"
spread
"
versus
"
infection
"
,
as a part of trying to disentangle the nature of the
infection that they covered.
ANSWER:
Can you help at all
, this waiver --
can we just go back to the start of
this waiver. Thank
you.
"A qualifying person" it relates to. The
144
undertaking so far as the English and Northern Irish and
Welsh claimants were concerned was -- it excluded those
under a disability. In other words
,
it excluded
children from the waiver
,
so it wasn't a question of the
waiver being a contract, or a min
o
r
'
s
contract
, which
was given validity by the judge's approval.
That
issue
never
arose
, presumably. But I don't know. You can
tell me. Or you may want to time to --
|
46,621 | 345 | QUESTION:
I think that will be another one to address in
the notes, sir
.
ANSWER:
In due course,
very well
.
|
46,622 | 345 | QUESTION:
In due course. It's certainly the case that we
can see in the documents referred to in the current
presentation note that we have, that the Scottish
lawyers who were involved in trying to reach agreement
on settlement terms in Scotland were alive to
differences between England and Wales and Scotland on
issues like minors, under 18s, and how these settlements
might apply to them.
ANSWER:
Yes,
well,
I
would expect -- I expect
that to be the case, but I'm just curious about the
position of those in England and Wales, as it happens,
who were under a disability
,
that is not legally capable
of giving con
s
ent to a waiver, not legally capable of
making a contract
,
at least in the minor's case
,
without
21 September 2022
145
an approval if the contract was thought to be for their
benefit. But I'm summarising the provisions of the Act
,
but
that
I think would be the position in England and
Wales. And presumably Northern Ireland as
well
.
|
46,623 | 345 | QUESTION:
Sir, we'll seek to bottom out some of those
differences that I've described and that you've alighted
on.
For today's purposes, we can turn next to the
formal offer that was made by the Scottish Office to
solicitors representing litigants in Scotland to settle
the litigation, which took place nearly two months, six,
seven weeks after this document of 24
June
1991.
Can we please go first to DHSC0003635_065.
So a document dated 24 June 1991, addressed to
Balfour and Manson. It comes from Richard Henderson,
from the Scottish Solicitor's Office.
If we look at the second paragraph, Mr Henderson
wrote:
"I
am
authorised on behalf of the Secretary of
State to offer formally to you terms of settlement for
individual claims
at
the
instance
of pursuers listed
in
Annex A to this letter and for
the settlement of
claims
for
damages against the Secretary of State on behalf of
those claimants listed in Annex B. The terms of
settlement are set out in the document labelled Anne
x
C
146
attached with this letter.
"I also attach a copy of the Macfarlane (Special
Payments)
(No
2) Trust dated
3
May 1991
[
the document we
just looked at] together with a copy of revised draft
Schedule 4 to the
Deed
of Trust. Arrangements are being
made to vary the terms of the
Deed
of Trust to
facilitate payments in terms
[
I think that should say
'
in terms
'] ...
of settlement
.
This will entail
substitution
of
Schedule 4 and also Schedule 3
(
Form
of
Undertaking
)
. The appropriate Form of Undertaking is
set out in Schedule 1 to the terms of settlement.
I
understand that you will arrange for the offers to be
communicated to the individual pursuers and claimants
through their appropriate legal advisers."
Just over the page, the first paragraph there,
Mr Henderson writes:
"Upon receipt of that pro forma letter and
schedule, we will issue the appropriate certificate to
the Macfarlane Trust
.
"
So outlining the procedure for claims to be
settled.
"We understand that thereafter the Trust should be
in a position to release payments to individual
claimants."
Now, the detailed terms of settlement with the
147
proposed substituted undertakings
which
accompanied this
letter, we understand to be the document at BNOR0000329.
Now
,
we can see in the top right-hand corner
,
annex C, which was the same annex letter referred to in
that cover letter we just looked at, the title of this
document
:
"Detailed Terms of Settlement of HIV
/
Haemophilia
Claims in Scotland"
Now
,
we don't need to go through all of the terms
that are offered in this document. If we could please
go through to page 11, we have an undertaking which
,
as
we'll see
,
is different to the undertaking contained in
the 3 May 1991 declaration of trust. The title
:
"Undertaking to be given by a qualifying
person
to
receive payment from the Macfarlane Trust"
If we go down to the bottom half of the page:
"I hereby discharge
the
said Secretary of State
[
Secretary of State for Scotland
]
and all other
Ministers of the Crown, Government departments
and
other
bodies
from
any
liability
that they may have in
respect of
the
infection of X person with
immunodeficiency virus
...
"
No
reference to hepatitis viruses
:
"...
alleg
edly
arising out of treatment with
Factor VIII or Factor IX
,
whether cryoprecipitate or
148
concentrate."
The remainder of the undertaking sets out other
forms of wording, discharging parties from agreeing to
give up the right to bring future claims. Again, it
seems relating
only
to HIV and not hepatitis viruses.
S
ir,
we seem to see, in this document, a different
undertaking and a waive
r
that's different in its scope
addressing only HIV and not also hepatitis
.
I can then move on, please, to the variation to
the
deed
of trust which took place in September
1991
.
A
minute ago
,
when we looked at the cover letter that
was sent to Scottish litigants' representatives, it
pointed to the fact that
--
or suggested that it was
going to be necessary to vary the
deed
of the
Macfarlane Trust
.
And we can see that document at MACF0000083_003.
So
,
19 September 1991,
deed
of variation relating
to the Macfarlane (Special Payments) (No 2) Trust
.
And
over the page, following an introductory wording, at the
bottom of this page, now this
deed
witnesses as follows:
"
Substitution of schedule 3
.
For
schedule 3 to
the Trust
Deed
there
shall
be
substituted the
following
...
"
And if we go over the page, a different schedule 3
is proposed. For current purposes, going to focus on
21 September 2022
149
page 7, where there is substitution for schedule
4
,
and
this schedule 4 appears to be in the same terms as that
which
we just considered, in other words only containing
a waive
r
for HIV
,
also containing a waiver for
hepatitis.
What that suggests is that waiver
which
applied in
Scotland rather than England and Wales, applied only to
future
payments
relating to HIV and not also to
hepatitis. We are going to come back in the note that
we're going to disclose to
try and
trace in a bit more
detail how it was that came about, if indeed that's
right
,
as well as addressing, sir, the points that you
raised in our discussion earlier.
Now
,
one of the issues that arose following the
settlement of the main HIV Litigation claims in Scotland
related to a category of claims which was termed
"Category G". The written note sets out some detail
o
n
this issue. It arose around September 1991, concerns
Category G claims. Broadly put, these were claims for
compensation by spouses,
parents
and children of
HIV
-
infected haemophiliacs
,
who
had
not themselves been
infected with HIV, but were at risk of doing so because
of their close and regular contact with an infected
haemophiliac.
Now
,
those claims were restricted by certain
150
criteria because of differences in the way the
litigation in England and Wales proceed
ed
and that in
Scotland
.
Because of
ways related to
the settlement was
being reached
the restriction on eligibility for
Category G claimants
had
the effect of
ex
cluding more
claims in Scotland than England and Wales. This issue
arose
.
It was considered by officials in the
Scottish Office. There were discussions between those
officials and representatives of the Department of
Health.
What appears to have happen
ed
is that the
eligibility criteria in Scotland
were
changed. As
a
result, more claims became eligible, and this was at
least an attempt to mitigate or reduce the disparity
that seemed to have arisen for this category of claims
between Scotland and England and Wales. There's some
detail contained in the written note and I'm not going
to address it any further today
,
sir.
Now that concludes what I intended to cover
today
about the HIV Litigation. I'm going to finally address
quite briefly compensation claims and decisions related
to HIV infection through blood transfusion.
Now
,
if
we go back in time, we can see in the
documents that around the time of the additional payment
to the Macfarlane Trust in November 1989, consideration
151
was given within the HHD to the question of compensation
or other payments for patients who ha
d
been infected
with HIV through blood transfusions rather than
treatment with factor concentrates.
In early 1990 Lord Forsyth, who was the relevant
minister at the time, was advised that the UK Government
position was that compensation would not be paid to such
individuals. So
no
doubt you'll recall Lord Forsyth
gave oral evidence on this issue. He described, if
I can paraphrase it, being unconvinced by some of the
reasons that were put to him by officials for this
position. Nonetheless, the overall policy position of
the Home and Health Department remained in line with
that of the wider UK Government
,
and the position was
that
no
money would be paid to such patients.
This issue arose again a little while later in
early 1991 in the context of the HIV Litigation. The
document suggested that around this time when the issue
came up again, Lord Forsyth effectively reaffirmed the
view that he'd expressed previously that the
distinctions that were being sought to be made between
haemophilia patients and transfusion patients didn't
stack
up.
We can see a number of documents that are
summarised in the written notes in which this particular
152
issue was discussed by departmental officials, discussed
with lawyers in the Scottish Office, and that some of
those discussions were prompted by correspondence which
had been
sent
by campaigning groups
to
the Department of
Health and responded to by Department of Health
Ministers. The HHD became involved. There was some
criticism we can see in the documents summarised in the
notes of the distinction which was being maintained
between haemophilia patients and transfusion patients.
Nonetheless, the position continued to be that of
the wider Government, which was
no
payments would be
made. We can get an insight into Lord Forsyth's views
from a contemporaneous document at SCGV0000234_198.
Now
,
it's dated 2 May 1991. I haven't gone to the
minute which preceded this document, but it was one
which reaffirmed the Government position that
no
money
was to be paid to individuals
who'd
been infected with
HIV through blood transfusion
,
and it records this.
It's from Mr Forsyth's private secretary:
"Mr Forsyth has seen Mr Tucker's minute of
2
9 April 1991 and your minute of 1 May 1991 about whole
blood transfusions. Mr Forsyth considers that this is
an extremely serious matter and that the Government's
position is indefensible. He has commented that we are
in danger of losing a lot of goodwill carping over
21 September 2022
153
a small financial obligation. Our refusal to release
information on records leaves us particularly
vulnerable. Mr Forsyth hopes we might try to change the
Government's line on this matter."
Now
,
despite the view that was expressed there on
behalf of Lord Forsyth, the Government position adopted
by the Scottish Office was maintained for most of the
rest of 1991.
The position changed in December 1991 when the
Secretary of State for Health in England and Wales
recommended a change of policy to the Treasury that was
accepted.
Now
,
similarly to other examples we've considered
today
, that change of policy appears to have happen
ed
with little or
no
consultation between the
UK Government's Secretary of State for Health and
ministers and officials in Scotland. Despite that lack
of consultation there was again a request for Scotland
and the other departments in the UK to contribute some
of the funding that would be required for this change of
policy, and there are a number of documents in which
officials and subsequently ministers address this
question of how much
--
whether and how much they should
be expected to contribute to the payments to these
individuals, despite the lack of consultation from
154
Central Government.
These issues were set out in a minute,
a submission from Mr Tucker to ministers in
December 1991, which proposed that the Scottish Office
should accept the change of policy and also
that
a financial contribution should come from the
Scottish Office to these payments. That was accepted by
ministers.
Now, there was then over the next few months work
to
finalise
and set up the scheme through which payments
would
be made to individuals who had been infected with
HIV by blood transfusion or tissue transfer.
In the last document I'm going to bring up
today
,
I'm going to highlight how the document describes the
scheme, which was agreed and set up, but also link back
to the waiver issue we were discussing earlier.
It's dated April 1992 and it's at SCGV0000239_024.
Now
,
this is a minute dated 9 April 1992 from
Mr Tucker to the chief executive of the NHS in Scotland,
I believe it was Mr Cruickshank at the time, seeking his
approval for the Scottish scheme for payments to HIV
infected recipients of blood and tissue and we can see
that
from the first paragraph.
The remainder of this document sets out the detail
of the scheme, the background
to
it
and I'm not going to
155
go into that detail now. I'm just going to pick up on
page 2
,
the section headed
"Differences with English
Scheme"
,
and then paragraph 9.
"I should also draw to your attention the terms of
Annex 1 to the Scheme which sets out the form of
undertaking to be given by the applicant. Our form does
not require an undertaking discharging the Secretary of
State in respect of liability for infection of the
applicant with hepatitis virus. In that respect it
differs from the English form of undertaking. However
again we consider ourselves to be bound by the terms of
the haemophilia settlement which did not limit
an applicant's rights in connection with hepatitis
infection. We have had strong representation against
extending the undertaking into this area. Our medical
and legal advisers specifically support the exclusion of
reference to hepatitis from the undertaking
.
"
So again, difference in the nature of the waiver
undertaking applicable in Scotland as with England and
Wales, to be explored further in the note which will be
prepared by the Inquiry team and disclosed as soon as we
can.
So that completes the material I intended to cover
today. We've covered a large number of documents
,
a
large number of documents.
I
hope it's been of
156
assistance in setting the framework and the structure of
the detail which is contained in the written note, which
has already been disclosed.
ANSWER:
Yes
.
Well
,
thank you very much
indeed.
Tomorrow?
|
46,624 | 345 | QUESTION:
Sir, tomorrow we return with a witness who will
be attending remotely, John Canavan, an official from
the Department of Health.
ANSWER:
So John Canavan tomorrow at 10.00.
10.00. Thank you very much.
(4.20 pm)
(The hearing adjourned until 10.00 am the following day)
21 September 2022
157
I N D E X
1
Presentation by Counsel to the
.............................
Inquiry about government
decision-making and the
response of government in
Scotland
21 September 2022
|
46,625 | 346 | QUESTION:
And you've held that position since 2006?
ANSWER:
Correct.
|
46,626 | 346 | QUESTION:
But your involvement with the
Irish Haemophilia Society dates back to the early
1980s?
ANSWER:
1982.
|
46,627 | 346 | QUESTION:
And you've been on the board since 1982 other than for
a brief period in around 2003-04?
ANSWER:
Yes.
|
46,628 | 346 | QUESTION:
You were chairman of the Irish Haemophilia Society
between 1987 and 2003?
ANSWER:
Yes.
|
46,629 | 346 | QUESTION:
Between 1994 and 2004 you were president of the World
Federation of Haemophilia?
ANSWER:
Yes.
|
46,630 | 346 | QUESTION:
And between 2011 and 2019 you were president of the
European Haemophilia Consortium?
ANSWER:
Yes.
|
46,631 | 346 | QUESTION:
You yourself have severe haemophilia B?
ANSWER:
Yes.
|
46,632 | 346 | QUESTION:
And you're a medical laboratory scientist by
background and training?
ANSWER:
Correct. |
46,633 | 346 | QUESTION:
And that's the capacity in which you worked
until 1994?
ANSWER:
Correct.
|
46,634 | 346 | QUESTION:
You've sat on multiple committees and boards relating
to haemophilia including, for a period of time, the
Irish Blood Transfusion Service board?
ANSWER:
I still sit on that board, in fact.
|
46,635 | 346 | QUESTION:
You've set those out in your witness statement in
paragraph 3; I'm not going to go through them all but
there is a significant number in terms of your
involvement.
In relation to previous inquiries, you gave
evidence at the Institute of Medicine Inquiry in the
USA in 1994?
ANSWER:
That's correct.
|
46,636 | 346 | QUESTION:
And what, in very broad terms, was the nature of your
evidence?
ANSWER:
The nature of my evidence at the IoM Inquiry was
related, entirely, to the response of governments
outside the US |
46,637 | 346 | QUESTION:
And then you gave information to the Royal Canadian
Mounted Police in 1995 in the course of a --
ANSWER:
That's correct. |
46,638 | 346 | QUESTION:
-- of a visit that was taking place in Canada not for
that purpose?
ANSWER:
That's correct.
|
46,639 | 346 | QUESTION:
You were involved in the Finlay and the
Lindsay Tribunals of Inquiry in Ireland. Just so that
we understand the difference between the two:
the Finlay Tribunal focused on infection through
anti-D and also blood transfusion; the Lindsay Inquiry
looked at the infection of people with haemophilia?
ANSWER:
That's correct.
|
46,640 | 346 | QUESTION:
And you gave evidence to the Lindsay Tribunal twice?
ANSWER:
Yes.
|
46,641 | 346 | QUESTION:
And you then gave evidence to the non-statutory
inquiry, the Archer Inquiry, in this country?
ANSWER:
Yes.
|
46,642 | 346 | QUESTION:
I'm not going to ask you in any detail about your work
in Ireland in the 1980s and '90s, but just so that we
can understand the position of
the Irish Haemophilia Society at that time, it was, as
I understand it from your statement, a very small
voluntary organisation and in the early '80s it didn't
have an office or even a permanent address?
ANSWER:
Yes, when I joined the board in 1982, the Society had
a voluntary committee, no office, no staff, no
headquarters. In fact, whoever the unfortunate
5individual was who happened to be honorary secretary,
all of the mail arrived at their house. So the annual
budget at the time was around £4,000.
|
46,643 | 346 | QUESTION:
And it was, I think, 1987 before there was any kind of
staff member at all?
ANSWER:
We had a part-time member of staff, two mornings
a week from 1987 and our first full-time staff member
in 1989.
|
46,644 | 346 | QUESTION:
Then I just wanted to ask you briefly about your own
knowledge of AIDS back in the 1980s and how you came
to be aware of the possibility of a risk of
transmission through blood or blood products.
Your statement indicates that that came to the
attention of the Haemophilia Society in Ireland in
1983?
ANSWER:
Correct.
|
46,645 | 346 | QUESTION:
And you yourself learnt about it through reading an
article in a laboratory magazine?
ANSWER:
Yes.
|
46,646 | 346 | QUESTION:
So through your own scientific work?
ANSWER:
Yes.
|
46,647 | 346 | QUESTION:
Do you have any recollection of roughly when in 1983
that might have been?
ANSWER:
March or April of 1983.
|
46,648 | 346 | QUESTION:
Then it was, I think, following a newspaper article,and you've referred, I think, in your statement to
the "killer blood" article, which I think dates it,
for our purposes, to the Mail on Sunday article at
the beginning of May '83. You then had a meeting with
the Irish Blood Transfusion Service?
ANSWER:
That's correct.
|
46,649 | 346 | QUESTION:
There was a suggestion that you discuss the issue with
someone you've described in your witness statement as
the "treating consultant". Would it be right to
understand that's Professor Temperley that you were
talking about there?
ANSWER:
Yes.
|
46,650 | 346 | QUESTION:
Again, just so that others can understand your
statement, what was his role?
ANSWER:
Professor Temperley was the national haemophilia
director, so he was the director of the main National
Haemophilia Treatment Centre in Dublin at the time.
The discussions I had were with Sean Hanratty, who was
the chief scientific officer of the Blood Transfusion
Service Board, and my meeting with him, which
I actually took a handwritten minute of, was based on
the fact that I was concerned that there seemed to be
little or no progress being made in relation to
self-sufficiency for factor concentrates from Irish
plasma. And I was -- you know, I had this idea in myhead that if we were self-sufficient there would be
a lower risk of transmission of potentially
blood-borne viruses.
|
46,651 | 346 | QUESTION:
In your witness statement, if we just have it up on
screen.
WITN7418001, please, Lawrence, and if we could go
to page 5.
If we pick it up, top of the page, this is
paragraph 7 of your statement, you've said --
ANSWER:
Yes.
|
46,652 | 346 | QUESTION:
"In his replies to us ..."
And the context in the previous paragraph was the
discussions you've referred to in 1983.
"... the treating consultant pointed out that all
blood products could potentially cause AIDS or non A
non B Hepatitis, and that the risk of bleeding was
much greater than the risk from any viral infection."
Do you have any recollection of when in 1983 that
was being said, roughly, by the treating consultant?
ANSWER:
That would have been around, I think, May or June
of 1983, shortly after my meeting with the Blood
Transfusion Service.
|
46,653 | 346 | QUESTION:
Then just one other request for clarification from
your statement. If we go over the page to page 6,
please. Paragraph 9, you report that:"In December 1984 we had the first diagnosis of
AIDS in an Irish person with haemophilia."
ANSWER:
Yes.
|
46,654 | 346 | QUESTION:
And then this:
"The indication from the treating consultant at
that time was that this may be the only case of AIDS
we would see in a person with haemophilia and that
perhaps only 1% of those who were HIV positive would
go on to develop AIDS."
Do you know whether any reason was given for that
rather optimistic prediction that it might be the only
case of AIDS?
ANSWER:
I think it seemed to be very much the prevailing
clinical opinion at the time. Professor Temperley
would have had a close relationship with the UKHCDO,
attended their meetings. If you look at similar --
people like Dr Peter Jones in his book in 1985 he
talked about 1, 1.5 per cent. So initially the advice
was very much that, you know, to stop taking factor
concentrates was much more dangerous, because there
was risk of bleeding, than the potential risk of
a potential blood-borne virus. By the end of 1984,
when we had the first case, I remember
Professor Temperley saying very clearly that he
expected this would be the only case we would see,
9that the risk of people with -- who were HIV positive
going on to develop AIDS was probably 1 per cent.
|
46,655 | 346 | QUESTION:
Can I then just ask you, in terms of the numbers of
people with haemophilia in Ireland and numbers
infected, if we look at a document you've exhibited to
your statement -- it's WITN7418004 -- we can see it's
entitled "AIDS, Haemophilia and the Government,
A submission from the Irish Haemophilia Society
calling for financial provision for people with
haemophilia infected with the AIDS virus", and
the date is April 1988.
If we could go to page 3, please, Lawrence. We've
just got some figures on the right-hand side of the
page.
ANSWER:
Yes.
|
46,656 | 346 | QUESTION:
Third paragraph:
"Of the 296 Haemophiliacs registered in Ireland.
"- 265 have been tested for exposure to HIV.
"- 106 have been infected with HIV ...
"- 9 have developed 'full blown' AIDS.
"- 4 [by that time] have died.
"- 70% of severe Haemophilia A patients have been
infected."
So the 296 haemophiliacs registered in Ireland,
did that encompass, as far as you understand it, those
10who were mild, moderate and severe?
ANSWER:
No, looking at the numbers, that would probably have
been moderate and severe.
|
46,657 | 346 | QUESTION:
Then we have the figures there, 106 infected with HIV,
so 40 per cent. Does that remain the figure, as far
as you know, of the numbers infected with HIV?
ANSWER:
Yes, yes.
|
46,658 | 346 | QUESTION:
Then in terms of the numbers infected with
hepatitis C, do you have any knowledge of what
proportion were infected with hepatitis C?
ANSWER:
We're talking about 240, 245 people.
|
46,659 | 346 | QUESTION:
Okay. So a very significant proportion?
ANSWER:
Yes, but also that would have encompassed a number of
people with mild haemophilia as well.
|
46,660 | 346 | QUESTION:
Understood. We can take that down, thank you.
I want to ask you now, Brian, about some of
the measures that have been put in place, over
the decades in Ireland, to address the needs and
the circumstances of those who were infected through
contaminated blood and blood products. The purpose,
as I know you understand, being for us to understand
whether there is anything that can be learnt from how
Ireland has responded to the plight of those infected.
So I wanted to start with the Haemophilia HIV
Trust. As I understand your statement, Brian, this
11emerged following, first of all, a survey that
the Irish Haemophilia Society undertook of its members
in 1987; is that right?
ANSWER:
Yes, I became Chairman of the Society in 1987, and my
top priority was helping our members who had been
exposed to HIV and who had developed AIDS. So, in
order to understand what their real requirements and
needs were, a dental surgeon and I -- who sat on our
board as well -- we did a survey of as many people as
possible who had HIV and AIDS, so I think we got
58 responses out of 70 surveys sent out and that
allowed us to draft up this proposal for Government,
based on a real understanding of what their needs
were.
|
46,661 | 346 | QUESTION:
That resulted in the submission that we looked at
briefly --
ANSWER:
Yes.
|
46,662 | 346 | QUESTION:
-- a couple of minutes ago?
ANSWER:
Correct.
|
46,663 | 346 | QUESTION:
The argument that was being made at that point in
time, as I understand it, was that there was a moral
responsibility on the Government to respond to
the situation of those who had been infected, through
no fault of their own, with HIV?
ANSWER:
Yes.
12 |
46,664 | 346 | QUESTION:
That wasn't accepted by the Government to start with
and the Society embarked upon a public and political
campaign?
ANSWER:
I mean, when you say it wasn't accepted, all we
received, actually, was an acknowledgement of receipt
of the document and then five months of silence. And
despite the fact I was naive enough to think, at
the time, that if you sent in a well reasoned,
well argued case that it would receive a fair response
from the Department of Health, that didn't happen. So
at the end of that year people were getting sicker and
they were dying, so we realised we had no option
really but to try and put political and media pressure
on the Government to respond to this.
|
46,665 | 346 | QUESTION:
Now, that resulted, eventually, in an agreement which
led to the establishment of the Haemophilia HIV Trust?
ANSWER:
Yes.
|
46,666 | 346 | QUESTION:
Did you -- what was your understanding of what
ultimately persuaded the Government to accede to that?
ANSWER:
Well, the fact that the political media campaign was
very successful, we got a lot of traction, a lot of
media coverage, we had some of our members with HIV
who spoke publicly and very bravely to highlight
the issue. And then it went all of the way to -- we
had a minority Government at the time -- it went all
13of the way to a vote in Parliament.
The week before the vote I had assumed that
the Government would offer some sort of compromise.
We spent the week in discussions, the Government
didn't move whatsoever on this. They made it an issue
of financial management so that when -- they then
threatened that if they lost that vote in
the Parliament they would call for an election. So
the Prime Minister lost the vote in Parliament, called
a general election, lost seats in the election, and
fortunately, in the course of the election campaign,
we had received written commitments from the leaders
of all of the other parties to implement a trust fund
if they got into office. The outgoing Prime Minister
then had to go into a coalition with another party
and, as part of the negotiations for the programme for
Government, the trust fund was established.
|
46,667 | 346 | QUESTION:
Now, initially, that trust paid regular payments, so
from about 1987 to 1991 there was some regular
payments?
ANSWER:
1989 to 1991, it was established in '89. We made
regular payments to some individuals, not to all
individuals. It was very much based on an assessment
of individual need and people's individual
circumstances, and people really were struggling, some
14people were really struggling. So regular payments
were made to those who needed them until 1991 when, in
fact, a further tranche of compensation was paid.
|
46,668 | 346 | QUESTION:
Those are the ex gratia payments, essentially, from
1991?
ANSWER:
Yes, yes.
|
46,669 | 346 | QUESTION:
We'll pick up those in a moment. If we then -- just
staying with the Haemophilia HIV Trust, from 1991
onwards it was one-off payments?
ANSWER:
Yes.
|
46,670 | 346 | QUESTION:
So it might be for funeral grants or equipment, those
kinds of --
ANSWER:
Yes. Hospital beds, wheelchairs, any -- special
mattresses, anything that would be required by
the person with HIV or AIDS to help them to deal with
the condition or -- and certainly one-off items which
would not easily be provided, in any sort of timely
manner, by the Health Service.
|
46,671 | 346 | QUESTION:
And what you've told us in your statement is that
the way it was designed to operate was that it didn't
have overly complex procedures, or requirements for
lots of different types of proof. The individual
would communicate with the trust, it might be by
letter or by telephone, and a decision would be made
as to whether to make the payment, and it was designed
15to be done as quickly as possible; is that right?
ANSWER:
Yes, it was very non-complicated. I think the Society
had people on the board of trustees with independent
trustees. So a request would come in for funding, it
may be based on a phone call, it may be based on
a letter and then that would be discussed very, very
quickly and a decision made. In some cases where it
was a very urgent situation and the request came in
directly to the Irish Haemophilia Society, we would
pay the item ourselves and then seek to recoup the
money later from the HHT.
If you look at our audited accounts for all
the years from 1989 to now, there is always an in and
out from the HHT and they never match up because,
typically, there can be a couple of months' delay
before recouping the money back. But it's always been
our view that the trust fund should be non-complex, it
should be easy to administer and that payments should
be made quickly where they're required. In fact
the procedures were set up following meetings with
the beneficiaries, so that was very important. They
were consulted on how they wanted the trust fund to
operate.
|
46,672 | 346 | QUESTION:
Now, in 2002 there were further payments made, we'll
come on to that, but the Tribunal that had been set up
16in relation to hepatitis C was extended to cover HIV?
ANSWER:
Yes.
|
46,673 | 346 | QUESTION:
And as a result there was a decision that needed to be
made about the future of the Haemophilia HIV Trust?
ANSWER:
Yes.
|
46,674 | 346 | QUESTION:
As I understand it, the decision was taken through
consultation with those who had been infected; is that
right -- with a range of beneficiaries?
ANSWER:
Yes, we organised a meeting with as many of those as
possible who survived with HIV and we asked them --
you know, at that point there wasn't an enormous
amount of money left in the trust fund so we offered
them the option of closing down the trust fund and
dividing the remaining funds equally between
the participants, or keep it going as sort of an
emergency fund, and they were very adamant they wanted
it kept going.
|
46,675 | 346 | QUESTION:
That's the way in which it has continued to operate,
again, through -- it continues, is this right, to make
one-off --
ANSWER:
Yes, yes.
|
46,676 | 346 | QUESTION:
-- payments? Again, it might be for equipment or --
you refer to Christmas payments?
ANSWER:
Yes, we also look very carefully at, you know,
the people's individual circumstances, and we make
17a number of payments at Christmas each year to
individuals who we believe are still in particular
financial need.
|
46,677 | 346 | QUESTION:
And there was a top-up of the amount that the trust
had in 2006?
ANSWER:
Yes, yes.
|
46,678 | 346 | QUESTION:
EUR 300,000?
ANSWER:
Yes, that's right.
|
46,679 | 346 | QUESTION:
The trust was chaired initially by one High Court
judge and then since then has been chaired by another
High Court judge?
ANSWER:
Yes.
|
46,680 | 346 | QUESTION:
You tell us in your statement that they had met with
a lot of those who were infected, but, you know, they
also made themselves known to the community?
ANSWER:
Yes.
|
46,681 | 346 | QUESTION:
Is that right?
ANSWER:
Yes.
|
46,682 | 346 | QUESTION:
And how important has that been?
ANSWER:
Both Judge Carroll and latterly Judge Murphy, we had
several meetings with the members who had HIV to hear
about their concerns and their issues, and also both
chairs of the trust would usually attend our annual
conference for the full weekend and meet members and
just have conversations with them. So they really
18developed empathy and a sense of understanding of
the real issues in the community.
|
46,683 | 346 | QUESTION:
And you were asked in your statement if you thought
that the HIV -- the Haemophilia HIV Trust, the HHT,
had been successful, and you've told us in your
statement that you think it has been, its objectives
were met, and you've identified three factors:
trustees acting with empathy and understanding;
the ability to respond rapidly; and its relatively
informal structure?
ANSWER:
Yes.
|
46,684 | 346 | QUESTION:
Is that right?
ANSWER:
Yes.
|
46,685 | 346 | QUESTION:
So that's the HHT.
ANSWER:
Mm.
|
46,686 | 346 | QUESTION:
Now, the second main plank of financial support for
those who were infected is the compensation tribunal,
and so I just wanted to ask you a little about how
that --
ANSWER:
There was the earlier 1991 -- (overspeaking) --
|
46,687 | 346 | QUESTION:
I'm sorry, yes --
ANSWER:
-- as well, yes.
|
46,688 | 346 | QUESTION:
Yes. Yes, let's pick that up.
So there was litigation in Ireland in the same way
as we know that there was litigation --
19ANSWER:
Yes.
|
46,689 | 346 | QUESTION:
-- in the United Kingdom, which was settled in 1991;
is that correct?
ANSWER:
That's correct. We employed a legal team from 1989
and worked with them and we were looking at
the Society actually funding a test case. But as this
was going on and on through the course of 1990, it
became apparent this was not going to see a courtroom
at any time in the immediate future and in the
meantime the number of people dying of AIDS and
getting AIDS was increasing rapidly. We then saw that
the -- the compensation paid by the John Major-led
Government in the UK, and we decided the time was
right to try and settle this politically. So at
the time the minister asked the Society for
a submission to settle these legal cases and we
entered, again, into a four or five-month political
and media campaign, culminating in an offer of
compensation in 1991.
|
46,690 | 346 | QUESTION:
That resulted in what I think you've described as
tiered payments --
ANSWER:
Yes.
|
46,691 | 346 | QUESTION:
-- in a way that's a similar but not identical, but
similar to the way in which it was done in the
United Kingdom?
20ANSWER:
Yes.
|
46,692 | 346 | QUESTION:
So if we look by at your statement, please.
WITN7418001, page 24.
It's paragraph 43, and you've set out in the
previous paragraphs the process of the litigation, the
campaign and so on.
ANSWER:
Yes.
|
46,693 | 346 | QUESTION:
"We secured an improved offer of £8 million, to be
paid quickly and with no £1 million claw back."
That was a clawback of what had been paid to the
HHT, was it?
ANSWER:
Originally the Government offer was 7 million, and
from that 7 they also wanted to claw back
the 1 million paid to the HHT in 1996, and they wanted
to stage the payments over a two-year period. So
frankly, in the week between that 7 million and
the improved offer, local elections were taking place
a week later, we knew we had one more week to optimise
our political and media campaign, we actually had four
candidates running in the local elections, so we
secured a better offer of 8 million and with no
clawback. So in fact it was an increase of 2 million
over the previous offer and it was paid over a course
of two or three months.
|
46,694 | 346 | QUESTION:
Then we can see the figures that were agreed there.
21ANSWER:
Yes.
|
46,695 | 346 | QUESTION:
So a married man with children, 101,000; widow,
93,000; married man with no children, 89,000;
single adult or child, £76,000; infected spouse,
25,000, although there were in fact none; and then
non-dependent relatives of a deceased man, 21,000.
So if we look at the position as at the end of
1991, you have those one-off ex gratia payments?
ANSWER:
Yes.
|
46,696 | 346 | QUESTION:
Then you have the operation of the HHT?
ANSWER:
The HHT, yes.
|
46,697 | 346 | QUESTION:
Now, as your statement then describes to us, what then
came to the forefront was the position of those who
had been infected with hepatitis C?
ANSWER:
Yes.
|
46,698 | 346 | QUESTION:
And you described that particularly coming to your
attention in I think, 1993, when there were
23discussions about the availability of Interferon and,
indeed, people being charged for treatment with
Interferon?
ANSWER:
That's correct. Obviously, when the hepatitis C virus
was identified in 1989, it became a topic where --
which we discussed out our conferences in '89, '90,
'91, '92, we were doing quite a bit of work on this,
and the first treatment for hepatitis C, Interferon,
there was actually a monthly charge for this, which we
felt they should certainly not be charging to people
who had been infected through blood products supplied
by the state. So we had a series of meetings with
the Health Ministry to discuss removing that charge
for people with haemophilia, and we also initiated
discussions on compensation at that point.
|
46,699 | 346 | QUESTION:
If we could just put your statement back on screen,
sorry, Lawrence, 7418001, and go to page 25. In
paragraph 46 you say this:
"Following many discussions, it became clear that
the Department of Health were willing to concede in
principle on the issue of compensation."
Then you go on to talk about how the Tribunal came
to be set up -- and I'll come on to that -- but what
was your understanding or impression of why it was
that the Department did ultimately agree to
24the establishment of what was initially going to be
a non-statutory but became a statutory Tribunal?
ANSWER:
I think certainly there was discussion -- that we had
many, many discussions with them, but it was --
the atmosphere was different than in '89 and '91. We
were not getting the same resistance -- absolute
resistance that we were getting in '89 and '91, when
it was like trying to get blood from a stone frankly.
They were a bit more open to the issue, they were
a bit more open to the discussion. And, in hindsight,
I think that's because they were aware that they had
this infection of over 1,000 women with anti-D in
the background, and that came to the fore in February
of 1994. So I think they saw this was going to be
a wider issue and they needed to deal with this.
|
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