Examination of Witnesses (Questions 380
- 399)
WEDNESDAY 21 JULY 2004
PROFESSOR BRIAN
TOFT
Q380 Dr Harris: Was it your understanding
that your findings would be made public?
Professor Toft: Indeed, it was,
yes.
Q381 Dr Harris: But I understand
there was a long period of time between submitting your report
and its publication. Why was that?
Professor Toft: I could not say.
You would have to ask the Department of Health that.
Q382 Dr Harris: Was there a problem
with regard to publishing your report?
Professor Toft: As far as I am
concerned, Dr Harris, there was not a problem with the report.
I submitted it to the Chief Medical Officer; it took time for
them to make up their mind as to whether they were going to publish
it or not.
Q383 Dr Harris: Was it your understanding
at the outset that it would be published?
Professor Toft: My understanding
was that it might be published or that it could be published.
Q384 Dr Harris: Rumours that it was
nearly not published and that there needed to be a legal opinion
before it was published were nothing to do with you. As far as
you knew, you did a report, you were not sure whether it was going
to be published, you submitted it, and then it was out of your
hands. Or did you retain an interest in whether your work would
see light of day publicly?
Professor Toft: Obviously I had
an interest in whether it was going to see the light of day. I
understood from formal conversations that a legal opinion had
been sought, but I was under the impression that because of the
act itself one has to be extremely careful: if you reveal anything,
even inadvertently, about a patient or that leads to a patient
being discovered, then you can end up with a criminal prosecution.
So I can well imagine that people would be very careful about
what they were going to do with this particular document.
Q385 Dr Harris: I am still a little
uncertain here about this publication issue. You spend a lot of
time doing this work, you know that bits of the report can be
blanked out, you can anonymise. I am keen to know whether you
were concerned that once you had submitted your report it would
never be published, and whether you were kept in touch with what
the decision was on when it was going to be published.
Professor Toft: In that case,
yes. I did ring the department. I did ask them what was happening
to the report. I was told that legal advice had been sought and
I just kept on asking, "When is it going to be published?"
What machinations went on in the department, I have no idea.
Q386 Dr Harris: Why were there months
of delay?
Professor Toft: Dr Harris, I cannot
speculate on that. There is no way I could possibly know.
Q387 Dr Harris: Were there any recommendations
in the report that you thought would be embarrassing to the Department
of Health?
Professor Toft: There is nothing
in my report that I believe should be embarrassing to anybody.
It is a statement of fact—at least, facts as I understand
them.
Q388 Dr Harris: In respect of this
85% compliance, that implies that there were 100 recommendations
and 85 have been met. Or is it 17 out of 20?
Professor Toft: I actually went
through them yesterday. There are 103 recommendations in total.
Some apply to the trust, some apply to the department, and quite
a few apply to the Human Fertilisation Embryology Authority. I
went through the ones for the authority yesterday and every one
has been either engaged with (that is, implemented in full) or
is an ongoing situation (that is to say, they are in the process
of either having a committee or a working group to implement it).
Some of my recommendations are not that easy to implement.
Q389 Dr Harris: Do you think there
needs to be a follow-up, an external outside follow-up of some
kind, to ensure that all the recommendations that you have made—assuming
that they are accepted—have been implemented, and that what
the HFEA say—that they have a vested interest in it, given
that they were criticised—is correct? Or do you think it
is okay for us to take their assurances?
Professor Toft: No, I would always
argue that an external body should look at the recommendations
of any inquiry and make sure they are implemented in full or at
least an explanation is given as to why they have not been implemented
in full.
Q390 Dr Harris: Given the difficulties
and question marks there were over the publication of your report,
do you think there are other reports out there that have not been
published following adverse incidents? Were you shown any of those
as background to your work?
Professor Toft: There have certainly
been instances of adverse incidents of which the authority have
notice, and those reports,[1]
at least up until the point of my publication, I do not believe
have been published. But, there again, with the situation that
existed, where people were quite concerned about even people inside
their own organisation knowing about adverse incidents, I could
well imagine that there are incidents that have not been published.
Q391 Dr Harris: Do you think it is
healthy and good in terms of proper regulation that there should
be these reports that have been made that are not published?
Professor Toft: I think all things
should be published. I think they should be transparent and open,
and I think things can be suitably anonymised such that you can
tell people, so that we can learn from these events. Having an
adverse event is absolutely terrible in any situation. It tells
you something about the world that you did not know, it is 100%
learning, and, therefore, in as far as is humanly possible we
should tell everybody as much as we can about these adverse events.
It is 100%, pure learning.
Q392 Dr Harris: How many of these
unpublished reports on adverse events are there?
Professor Toft: I could not say.
Q393 Dr Harris: About.
Professor Toft: In the research
that was carried out by the authority on my behalf I think there
were nine in total over the period between 1991 and when I did
my report in 2002-03.
Q394 Dr Harris: Given that you think,
following the publication of your report, 85% of its recommendations
have already been implemented, is it your view that, had some
other of these reports been made public, some of the adverse events
that followed and you had to investigate might have been avoided?
Because you would have been report number 10, in theory, rather
than the report that dealt with all these issues.
Professor Toft: I take your point.
In fact, the main event, the untoward event that I actually investigated,
had never happened before. Certainly there was no indication in
any of the events that I was later told about of a similar kind
of event. The answer to your question, in that sense, is no. The
event that occurred at Leeds and the second event that occurred
at Leeds were unique to Leeds in the sense that somebody had taken
the wrong sperm and fertilised the wrong eggs. As far as I know,
that had never occurred before—or at least there is no documentary
evidence that that had occurred before. The other events were
to do with the implantation of embryos in the wrong person.
Q395 Dr Harris: Have the HFEA changed
their policy now, as far as you know? Are they going to publish
more of the future reports of this nature? Has there been a change?
Professor Toft: There certainly
has been a change. I am given to understand that all the documentation
is available to the public and so forth, and there is now an alert
system that alerts all the clinics the moment they know of an
event. They actually tell people that the event has occurred—suitably
anonymised, of course. They are engaging in that now, which they
did not do previously.
Q396 Chairman: Topical around here
this week has been the discussion of intelligence, how it is handled
and so on, and the systems that there are. Would you like to say
anything about the systems within the HFEA, or, indeed, whether
problems are created by individuals and personalities and so on,
or do you think there are some kind of cultural behavioural patterns
in there that make it difficult to get the kind of support that
you obviously wanted?
Professor Toft: I think it is
more to do with the culture than anything else. I think the culture
was such that people over the period of time had become quite
concerned about the nature of the regulations. In fact the Act
itself, section 33, is quite draconian. If you make an inadvertent
remark about anything that leads to a patient being discovered,
then you can end up with a criminal prosecution. I think that
over the years this has intensified. Of course I did mention in
my report a thing called Group Think, which is to do with the
way in which groups look at themselves. In fact it is a dysfunctional
mindset. This is completely inadvertent; people do not engage
in this deliberately, it kind of happens. It is a social-psychological
problem.
Q397 Chairman: We meet it quite a
lot in our own organisation.
Professor Toft: I am quite sure
you do.
Q398 Chairman: Do you think it has
changed? Why has it changed? What evidence do you have that it
has changed?
Professor Toft: Personally I have
no evidence that it has changed, I am just led to believe that
things have been put in place which would help to prevent that
from occurring.
Q399 Chairman: It could still be
a secret society.
Professor Toft: Absolutely, Chairman.
1 Note by the witness: The word "reports"
is used by me as a verb, not a noun. But the members of the Committee
appear to understand what I have said as a noun from here on.
There were no physical reports on the adverse incidents I refer
to. But there were reports of adverse incidents to the HFEA. These
reports (verb) were included in the HFEA minutes of Licence Committee
meetings. And it was those reports to which I referred. Back
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