Examination of Witnesses (Questions 240-258)
MISS MELANIE
JOHNSON MP, MS
ELIZABETH RYAN
AND MR
GEOFF DESSENT
10 FEBRUARY 2005
Q240 Mr Bradley: But would you want to
ensure that using the overseas patient officer is applying the
test of eligibility consistently across the country? From your
position, would you want to ensure that each trust, through that
. . .
Miss Johnson: Yes.
Q241 Mr Bradley: You would?
Miss Johnson: Yes, but that is
an application of the broad rules. You cannot argue about consistency
in an easy way about individual clinician's decisions.
Q242 Mr Bradley: Do you monitor those
decisions from the centre?
Miss Johnson: There are guidelines.
There is a set of guidelines.
Q243 Mr Bradley: Do you monitor how they
are being implemented?
Miss Johnson: There are obviously
regular contacts. Elizabeth Ryan might want to comment on the
contacts that are had between the Department and the managers,
but clearly, there is regular contact between the Department and
those involved with actually overseeing the implementation of
the guidance.
Ms Ryan: As the Minister has said,
we have issued very comprehensive guidance, which has gone to
every trust, and which we know through our contacts with overseas
visitors and managers is followed fairly closely. I and my team
have regular contact with overseas visitors managers. We attend
meetings of the overseas visitors support group that Pam Ward
co-chairs. We have people telephoning us, seeking advice and so
on, every day, so we do know what people are doing and we do know
that, if a particular issue is coming up, we can be in a position
to make sure that people understand what the correct procedure
is.
Q244 Chairman: Would the kind of people
ringing you be an individual GP or a PCT?
Ms Ryan: It is usually overseas
visitors managers themselves, the people who are actually operating
the procedure, but yes, we have telephone conversations with members
of the public, and I have spoken to one or two GPs, yes. We will
talk to anyone who wants to seek advice from us.
Q245 Dr Taylor: What bothers me, as an
ex-clinician, is, with the clinical freedom, you start the treatment.
Then the patient finds that they are one of the people who are
not covered. Is there not a huge risk, when they discover the
sort of bill they are footing, that they are going to just defect
and not turn up and therefore stop treatment, and then they will
be in an even worse state than before?
Miss Johnson: I am sorry. The
circumstances were not clear to me. You say that they suddenly
find out. I am not sure what that amounts to.
Q246 Dr Taylor: When the doctor starts
them on treatment, does he say, because he has worked it out,
"I am starting you on treatment but you are going to have
to pay," or is that something that suddenly dawns on the
patient later, so that when it dawns on them, they realise they
are running up a huge bill that they can never ever afford, so
they just stop the treatment and disappear, and then become another
pool of infection?
Miss Johnson: If they are seeing
the doctor in the first place, the doctor has presumably become
aware of what their residency entitlement is, as it were, and
therefore whether they are entitled or not in the first place.
You are not talking about somebody coming in through an A&E
clinic here. You are talking about somebody turning up for a booked
appointment. I am assuming that the doctor may well know what
the circumstances of that particular patient are in any case.
Ms Ryan: What would normally happen
is that the patient will be told as soon as possible after first
contact if they are likely to be chargeable. In an emergency,
if somebody has turned up and they are clearly very ill and treatment
needs to start straight away, then that treatment will happen,
the treatment will start straight away, so there may be a day
or two before it is possible to ascertain all the circumstances,
to establish that they are chargeable, but you will not have somebody
going weeks and weeks into treatment and running up a bill of
thousands of pounds and then suddenly being told they have got
to pay. That will not happen.
Q247 Dr Taylor: No, because as soon as
they are told, they will defect, so they will not build up that
bill.
Miss Johnson: One of the issues
is, obviously, that some people do end up receiving charged treatment
and are unable to pay, and so trusts do end up sometimes having
to write off debts. That is not only in the HIV. We are only concentrating
on this, but obviously these regulations cover a much wider area
than HIV/AIDS. They cover the whole range of provision.
Q248 John Austin: But with HIV, there
is a major public health risk as well, which you, as a public
health minister, must be concerned a bout.
Miss Johnson: Of course, and that
is why we want people to come forward for diagnosis, and that
is why we are encouraging them to come forward for diagnosis,
and that is why diagnosis is free. For many of the people that
we are talking about the treatment is also free. The question
that you are raising is whether there is a public health advantage
to free treatment for those for whom free treatment is not being
provided, and what I am saying to you is that it is not like some
of the other things for which we provide treatment, where there
is a course of treatment and you are cured.
Q249 Dr Naysmith: We have evidence, Minister,
that you will reduce the viral load by treatment, and that reduces
infectivity, and that is known in HIV.
Miss Johnson: Yes, "reduces"
is the imperative word, I fear, but this is a debate that I am
sure the Chief Medical Officer will be very happy to engage in
with you.
Q250 John Austin: The risk of transmission
is very clearly linked to the viral load. The risk of transmission
of infection is lower if the viral load is lower.
Miss Johnson: My point is that
it is not zero. Somebody who has had a course of treatment for
gonorrhoea and taken the course has a zero risk.
Q251 Chairman: We understand the point
you are making. I am not sure everybody would agree with you,
looking round the room. What I am interested in is, when we were
looking at sex education—and we talked about this in the
first part of this morning's session—I have a vivid memory
of lots of evidence 18 months ago about the continuing impact
of section 28 on teachers' views on what they could and could
not say in the classroom, even though section 28 was withdrawn.
Are you sure that clinicians understand exactly what they can
and cannot do, or could we have an ongoing section 28-type situation,
which could have serious public health consequences, because of
a lack of clarity about what they can and cannot do, and a fear
that what instinctively they want to do could have repercussions?
Miss Johnson: I am sure it is
possible to produce some examples of confused clinicians with
1.3 million staff in the NHS, of whom quite a lot are doctors.
Some of them may not be fully abreast of everything about everything.
I cannot say that you are not going to produce some examples like
this, but we would be concerned if people generally had some kind
of misunderstandings about this, that there were myths of some
kind out there. We would, of course, be very concerned about that.
That is one reason why the regulations were revised to end up
with fundamentally exactly the same basis that they had always
had prior to 2004, but they were tightened in a way that made
it clearer exactly who was eligible and who was not. I think the
main change, which we have talked about at some length, was the
12-month provision. It was never meant to cover those who had
stayed illegally for 12 months; it was meant to cover those who
were ordinarily resident; it was just that "ordinarily resident"
had not been translated into "legally resident," and
we just made it clear that that was always the intention of it.
So the whole purpose of doing this—and there is a discussion
going on currently about primary care in the same way, with consultation—was
to consult in a widespread consultation over this. It took a considerable
period of time, and Elizabeth may want to say all the organisations
that were involved in that. We have done our best to make sure
that there is buy-in understanding and that this does clarify
the situation considerably. That is not to say you will not find
an example out there of somebody who does not understand.
Q252 Chairman: As far as Ms Ryan is concerned—and
you mentioned earlier on that you do have contact with trust charging
officers—you would feel that the Department has taken as
many steps as it can do to ensure that the people who are in the
front line, the clinicians who will meet the patients, fully understand
what these regulations mean, and from a public health perspective,
do not feel constrained?
Ms Ryan: Yes, I am very confident
of that. The guidance is very clear that clinical priority comes
first.
Q253 Dr Taylor: I am going on exploring
that, because what we are missing is an actual clinician on that
handle. If I can just pass on a comment that has been passed to
me, it has been said by one of our experts that, because of the
anonymity and the confidentiality and the open access of these
sort of clinics, the doctors do not know every issue at the time
when they have to start the treatment, and they are not really
able to work it out, and there is no standard way that these people
are assessed in clinics in practice, therefore people are being
started on the treatment before they are aware at all of the costs,
and so there is a huge risk of drop-out.
Miss Johnson: There is no reason
why those who are managing the clinic should not be having a regular
dialogue with the overseas visitors managers. If they are not
doing so, obviously, they will necessarily be short of understanding
and guidance, but there is no reason why that should not be taking
place, and I am sure that the overseas visitors managers stand
very ready to have a chat, either with clinics or with individual
clinicians, whatever. As you know, people do not just turn up
and get immediately put on a script for HIV/AIDS treatment, so
it is not just going to happen overnight.
Dr Taylor: I can see a recommendation
coming!
Q254 Dr Naysmith: Minister, this whole
area has all sorts of potential ethical dilemmas between doctors
and patients, and doctors and their employers, given what we have
just been talking about, and doctors having the freedom to start
a treatment, and then maybe a PCT deciding that they do not have
enough money for it to continue, or whatever reason. We know from
evidence that was given to us that doctors do not like this kind
of gatekeeper role in this area. Have you had any discussions
with the GMC about the implementation of this policy and what
it means for the professionals who have to take these decisions?
Miss Johnson: Elizabeth may want
to comment. It was before my time in the Department that a lot
of the discussions were going on, and I am not the Minister who
deals with this on a day-to-day basis either. What I would say
is that people have had plenty of opportunity to be involved with
the consultation. We did discuss the question of easement for
clinical decision-making, and that easement was built into the
new guidance that was issued. When you say people running out
of money, I am not quite sure what you mean. I do not think people
run out of money.
Q255 Dr Naysmith: I did not say "running
out of money".
Miss Johnson: I thought you did.
Q256 Dr Naysmith: I am sure the transcript
will show. There are two primary care trusts in my area. Somebody
in my constituency moved from one to the other recently, and they
were receiving a treatment paid for by one, and when they moved
into the next one, they were told they could not have it, until
I intervened. There is room for that kind of misunderstanding
in this area, particular since I suspect in some parts of the
country all PCTs do not have overseas visitors managers.
Miss Johnson: Overseas visitors
managers. All the trusts do.
Q257 Dr Naysmith: I am sure they do,
but in some places they will get a lot to do and in other places
they will not get very much to do, and it is that kind of area
where you can get problems arising because they just read a circular
and think "This is what we do."
Miss Johnson: I am sure their
association also provides support and guidance as well, and I
know that you had the opportunity of taking evidence from Pam
Ward.
Q258 Dr Naysmith: We are quoting experts,
and one of our experts passed me something that I should have
known when I was talking about virus load. Basic epidemiology
says quite clearly that you do not have to reduce a risk to zero;
you only have to reduce it to less than one. Our experts win!
Miss Johnson: I note that. I think
we shall have to get the experts to do battle. I nonetheless maintain
the very firm understanding, which is that there is a zero risk
for some things after treatment and there is not a zero risk with
HIV/AIDS.
Dr Naysmith: I should have known that
because of a basic immunology course I did many years ago. That
was something I should have known.
Chairman: Minister, can I thank you and
your colleagues for a very useful session. We are most grateful
to you.
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