Examination of Witnesses(Questions 210-219)
PROFESSOR MIKE
RICHARDS CBE, DR
FELICITY HARVEY,
MS UNA
O'BRIEN AND
PROFESSOR SIR
MICHAEL RAWLINS
12 FEBRUARY 2009
Q210 Chairman: Good morning. Could I
welcome you to our second evidence session in our inquiry into
top-ups and access to medicines? For the record could you give
your name and the current position that you hold, please?
Dr Harvey: Dr Felicity Harvey,
I am Head of Medicines, Pharmacy and Industry Group within the
Department of Health.
Ms O'Brien: I am Una O'Brien;
I am the Director General for Policy and Strategy, responsible
for taking forward the Government's response to the Richards Review.
Professor Richards: I am Professor
Mike Richards; I am National Cancer Director and I led the recent
review for the Government.
Professor Sir Michael Rawlins:
I am Michael Rawlins, Chairman of NICE.
Q211 Chairman: Welcome once again.
We have specific questions for individuals in this particular
session and I would like to start with the reason we are here
and put a question to Mike Richards. It took you just four months
between starting the review and publishing your conclusions. How
do you respond to the criticisms that your review was unnecessarily
rushed and insufficiently rigorous?
Professor Richards: I believe
it was a rigorous review. There were time constraints but those
time constraints were set by the fact that there was such a demand
for clarity on this issue as quickly as possible. That demand
was coming, as you know, as much from parliamentarians as from
other sources. We had a fixed time for the review and during that
time we engaged with a very large number of people and sought
a great deal of evidence. In total we engaged with over 2000 individuals
and a lot of organisations during that time and that included
focus groups with the public, it included working with patient
groups whether they were cancer or non-cancer groups, with charities,
with clinicians, with NHS managers, with the pharmaceutical industry,
with the insurance industry, with academics and, indeed, with
parliamentarians early in the review. I think we sought a great
deal of opinion from that. We also undertook a number of specific
pieces of work to try to find out the facts, one of those obviously
related to the issue you were discussing earlier on this morning
about what is the size of the problem.
Q212 Chairman: You think overall,
in view of the width and breadth of your review, that the time
constraint did not in any way undermine the outcome and the conclusions.
Professor Richards: I do not believe
it did, no.
Q213 Chairman: What was the scale
of the problem that was identified? For example, how many patients
were being denied access to drugs recommended to them by their
doctor or even having their NHS care withdrawn because they had
chosen to buy additional drugs privately? We hear cases about
this in the media, what was it like out there before your review?
Professor Richards: I think the
number of individual cases reported in the media is quite small
and Professor McCabe earlier on was quoting a figure of 18 and
that is about right. Some of those were about patients who had
actively been denied NHS care when they chose to pay for a drug
privately. The case of Linda O'Boyle, which was one of the central
cases that stimulated the setting up of the review, was one such
case. That is quite different from the number of cases that are
being referred to PCTs for exceptional case funding or individual
funding reviews. From the survey we did of PCTs we estimate across
the country there are about 15,000 patients per annum who are
being referred to those exceptional cases panels. I think it is
very important to say that that is not just cancer; in fact three
times as many of those were for non-cancer as they were for cancer.
Over the course of a year it probably relates to about 50 different
drugs and they fall into a number of different categories. There
are those drugs which are currently going through a NICE appraisal
where NICE has not yet issued a verdict; there are those drugs
that will never go to NICE because the request is to use them
off-label (that is outside their licence indications); then there
are a number where NICE has said no in general to the use of this
drug except where the clinician feels there is a truly exceptional
circumstance. What we do not know, of course, is how many cases
there are where clinicians have tried half a dozen times before
to get funding for a particular drug and have been turned down
by that PCT so are not continuing to ask. That is extremely difficult
to estimate but I think we can say we know what the overall size
of the numbers going through those committees is and we know that
roughly between two-thirds and three-quarters of those are being
accepted and approved by the PCTs. Again, as has already come
out this morning, there is variation between PCTs and, according
to the Rarer Cancers Forum work, that ranges from 0% to 100%.
Q214 Chairman: You are probably aware
of what some witnesses have told us in this inquiry that your
recommendations about separating privately funded and NHS funded
care are merely a re-statement of existing policy, others have
argued that it is a fundamental change for good or ill in terms
of the use of the National Health Service. Which view do you think
is correct?
Professor Richards: I think that
shows that there was confusion about what the previous guidance
meant in these circumstances. The previous guidance goes back
to 1986 and in fact related to an era where the issue was one
of queue jumping within the NHS and had nothing to do with the
use of drugs for patients undergoing treatment for cancer, for
example. It was a very different circumstance. What we have done
is to issue new guidance because there was confusion about what
the existing guidance meant in practice and that was leading to
the variations in interpretation around the NHS. The fundamental
element of the new guidance is that patients should not have their
NHS care withdrawn if they decide to pay privately on top of that.
The guidance is also then about how it should be handled. I think
it is entirely consistent with the previous principle that a patient
should not simultaneously be an NHS patient and a private patient.
That was true in the 1986 guidance and it is true again in the
2004 guidance.
Q215 Chairman: Did we need a review
to change the guidance?
Professor Richards: Absolutely
yes because there were those variations in interpretation. There
was a great deal of concern amongst the public, amongst clinicians,
amongst parliamentarians. Yes, we needed a review to come to some
firm conclusions about that.
Chairman: We will pick up on one or two
of those issues with yourself and other witnesses. We will move
over to Richard now.
Q216 Dr Taylor: I want to look at
the practical implications of separating care, and I am looking
in particular at Una and at Mike. We have had many concerns about
continuity of care, about the consultants who, by principle, will
not do anything to do with private work. We had Len Fenwick at
one of our sessions saying, in relation to cancer in particular,
that it is a little naive to believe that there would be complete
separation; it is simply not possible. Mike, you have just used
the words "pay privately on top". Are we not in fact
moving some people straight into the private sector and other
people who cannot afford are being left in the NHS?
Professor Richards: I gave this
extremely careful thought during the course of the review and
discussed this with a lot of clinicians and with a lot of different
NHS trusts before coming to my conclusions on this. The first
thing we were trying to achieve was that there would be fewer
occasions when patients would feel the need or wish to pay for
drugs and half of this report is about improving access to medicine
for NHS patients, and that is its title. Trying to reduce the
number is very important. However, what we also heard from all
the people we engaged with was that surely some of these drugs
should be available to people, that they should be allowed to
pay for them if they could not be afforded by the NHS. Comments
were coming out earlier this morning about the fact that we do
have a mixed economy; people are paying for private physiotherapy
and then having a hip replacement on the NHS but those can be
kept separate. Indeed, you can have IVF privately and then have
your maternity care on the NHS. That is again separate. We considered
this carefully and what I set out in my report were four different
ways in which separate care can be delivered and delivered safely.
You can do it by getting a private hospital—maybe one that
is across the road—to deliver that private care. About half
of our hospitals have a private facility and the private care
could be given in the private wing or facility of that hospital.
We have also said that the drugs could be given by a private home
healthcare provider and we know that is already happening around
the country anyway. The fourth thing we have said is that you
can designate an area of an NHS hospital as private for a specific
period of time in the same way as you have a patient in an NHS
hospital but in the private wing and they need a CT scan you do
not have a separate CT scanner for that patient but that CT scanner
is being used in private mode for the time the patient is having
it. We set those out but very deliberately did not say that there
was a one size fits all solution because it will vary across the
country. I know, for example, that in the north west they are
opting to go for the home help care providers in some parts of
the area because they believe the demand is going to be very small
for this and they do not want to set up a separate facility; they
believe it can be very safely done that way. In the north east
they have taken a different approach; they have designated three
hospitals—Carlisle, Newcastle and Middlesbrough—that
will do this work. They all have a private wing already and they
feel that is the safe way that they can manage this. Solutions
can be found that are entirely consistent with the principles
of separate care.
Ms O'Brien: I think I can re-enforce
what Professor Richards has said. It is very clear from the consultation
responses we have had that there are some issues about how you
deliver this in practice but because we have some worked examples—as
Mike has cited—we already know that it will be possible
for localities, if they take the time, to work this through. We
have asked strategic health authorities in their system oversight
role to really get involved and take soundings locally, to work
with local providers and local commissions to ensure that arrangements
are put in place that are locally sensitive to the delivery of
separate care. While I appreciate and am aware of some of the
evidence that you were given in your previous session—we
have had some of these points raised with us during the consultation
on the guidance—we will be taking account of those and working
with them through SHAs to make sure there is a transparent system
organised and delivered locally.
Q217 Dr Taylor: Going back to Mike,
your example of private physio after a hip replacement, I do not
think that really comes into the same category as having or not
having a drug that has a good chance of extending life. I do not
think they are very comparable.
Professor Richards: What I said
was that one of the things that was drawn to our attention during
the course of the review is that patients have, for a long time,
been having some care privately and some care on the NHS; that
has always been accepted as long as the two are separate.
Q218 Dr Taylor: Because of the shortage
of resources, the shortage of single rooms in hospitals that do
not have a private facility, is it going to be acceptable for
those rooms to be used for this sort of purpose?
Professor Richards: It would be
possible to designate a chemotherapy unit out of hours at five
o'clock on a Tuesday afternoon to be the place where you do the
private chemotherapy. If that is kept separate then that is perfectly
acceptable.
Q219 Dr Taylor: As you know from
our talks I am not happy that somehow this is not producing one
NHS for those who have that little bit of extra money and a slightly
different NHS for those who cannot. Unintentionally do you not
think that this has opened the way for further inequity and certainly
further inefficiency because of the huge amount of work that is
needed to create these separate units?
Professor Richards: I do not believe
that that is the case. I think it can be managed perfectly effectively
and I think we have set out the different ways in which it can
be done. We must remember that we were looking at what the two
extremes were. One extreme was that you say to patients, "Sorry,
if you have any private care you cannot come to the NHS"
and we got a very, very clear message from the public, from patients,
from a whole lot of people that that was utterly unacceptable.
At the other end of the spectrum we could have gone down a route—we
looked at this and rejected it—of saying that effectively
the NHS can have a set of basic care that you get free and then
on a sort of top-up basis you can pay for extra things on top
of that and then there would be a lengthy menu of things you could
pay for on the NHS. We rejected that as well because that is not
the NHS that I certainly want to see. I think what we have found
is a way of enabling people to have that private care while at
the same time preserving the fundamental principles of the NHS.
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