Examination of Witnesses (Questions 280
- 299)
THURSDAY 14 JANUARY 2010
PROFESSOR ROD
GRIFFITHS, MR
JOHN MURRAY,
MS DEBORAH
EVANS AND
MS TERESA
MOSS
Q280 Dr Naysmith:
Do you believe patients are suffering because of it?
Mr Murray: I refer to the Tadworth
example, the Spinal Injuries Association and the question of deep
brain stimulation. I am aware of other anecdotal examples. There
is clear evidence that in some cases there is a problem.
Q281 Dr Naysmith:
Ms Evans, you referred to the developing financial climate. Do
you think it may have a deleterious effect on the services for
rare conditions? We really do not know what will happen to the
National Health Service apart from the fact it will be protected.
Ms Evans: We know that we will
not continue to have the very generous levels of funding. We have
always known that because the intention was to achieve a standard
equivalent to European levels. We know that it is at least plateauing.
There will be tremendous pressure on the NHS to look at ways to
make patient pathways more effective. There is a good deal of
scope for us to do that and that probably applies as much to specialised
services as to PCT commissioning as a whole. There are a number
of way in which we run and deliver healthcare at the moment that
need more work, of which outpatient services is a good example.
People have talked about length of stay. Reference has been made
to trim points and long lengths of stay and whether they are good
for people or we can organise care more effectively. There will
be tremendous pressure on the system and a lot of that will be
good and will stimulate innovation and change. It is our responsibility
as specialised commissioning groups and PCTs to look hard at issues
of equity and ensure that the people who have the specialised
conditions are not being unfairly penalised because of all the
difficulties we have talked about today: they are less able to
be counted, managed and all the rest of it.
Q282 Dr Taylor:
I turn to Ms Moss and Professor Griffiths and deal with the very
rare diseases. For my information, do the definitions roughly
fit with orphan and ultra-orphan drugs?
Professor Griffiths: Yes. We work
on fewer than 400 cases. I could take you through some of the
arithmetic which suggests that that is about the right number.
It could be even less but certainly not more than that.
Q283 Dr Taylor:
When you say it includes heart and lung transplantation is that
just the combined transplantations or both?
Professor Griffiths: Both together
or whatever.
Q284 Dr Taylor:
What are the real challenges for commissioning healthcare for
this group of people?
Professor Griffiths: Essentially,
there are two or three issues. One is that some things are very
expensive. That comes down to the cost of developing new drugs.
If it costs £1 billion to develop a new drug the UK's population
is probably 5% or less of the total world population that might
be able to afford it. The patent life is probably five to 10 years.
You can divide it up and work out how much money the company must
recover to pay back that £1 billion. Then you divide by the
number of patients. Once you get past 400 patients you are down
to a figure under £20,000, so that is in the same ballpark
as everybody else. But up in the very rare region the thing is
bound to cost more than NICE would normally say was cost effective.
You must either say to those patients to forget it and they might
as well go hang or you need a special mechanism to deal with things
that are that rare. In a sense that is what the NCG does. The
second thing is about expertise. Almost anybody can stand up and
say he can treat some condition that nobody has ever heard of,
but you need a way to make sure that is believable. We have some
quite skilled medical advisers, plus we have the royal colleges
and various other stakeholders on the committee. When we say that
we will designate that person the idea is that everybody else
can believe that person really does know what to do. By designating
it in effect you create managerial pressure that only those hospitals
will do it because the rest will not be paid. You have clinical
and managerial pressures lined up in the same direction to say
that is where you go for this condition. That means you can publicise
it and you hope to get the referrals so patients get to it quickly.
Those two things work reasonably well together. The last issue
one is left with is gaming. Will the trust load overheads into
that one and not the other, charge for something twice or whatever?
Although people criticise the current arrangements I think that
having the NSCG able to crawl all over what the SCG does allows
us to say that, yes, they drive just as hard a bargain at that
level as we do at local level and that at least gives everybody
confidence. If we go back to when NSCG was inside the Department
of Health—I chaired it then—there was a definite feeling
in the health service that somehow those really rare things got
a free ride and loads of money were chucked at them. I do not
believe it was true but because nobody could scrutinise and challenge
it that was what they thought. We have gone some way to being
able to break that. There is a risk in the new proposals that
that notion will re-emerge unless we believe that the people on
the new committee are able to challenge and drive just as hard
a bargain on behalf of everybody else. I will not be chairman
by then; I shall be out of it, but it has to be as good as it
is now.
Q285 Dr Taylor:
We have NSCT as well as NSCG.
Professor Griffiths: The "T"
stands for "Team".
Ms Moss: It is the team of clinicians
and managers who commission the 50-plus services at national level.
Ms Evans: It is Ms Moss's team.
Q286 Dr Taylor:
I have gathered that. They do the work for the NSCG?
Ms Moss: We do; we are the legs
on the ground going round visiting the services and working with
the hospitals to set them up and monitor those services and driving
a bargain.
Q287 Dr Taylor:
We are told that you have the presence of the larger royal colleges.
Are they pretty good at turning up at these meetings?
Ms Evans: They are.
Professor Griffiths: The surgeons
and physicians usually have a job and so they send deputies; the
other three normally send their presidents. They are very good.
In the past I was president of a faculty in an academy and I have
a bit of leverage in persuading them to come. If we really want
them to be there for particular things I write to them individually
or ring them and most of them turn up.
Q288 Dr Naysmith:
How are therapies assessed for clinical and cost-effectiveness?
What role does NICE play in this?
Professor Griffiths: NICE does
not. There are some things that we have asked NICE to look at
but it just puts it back to us, saying that it is too rare for
it to bother with it. We collaborate and things are discussed,
but it is not easy. Obviously, where you have something that is
very rare it is difficult to organise a controlled trial because
the numbers are too small. It must be international and so forth.
You have to look at a range of evidence. I believe that is where
the colleges are very useful. It means that you can put it in
front of the colleges. Sometimes they will pass it through into
their committee structure. You get the best opinion you can. We
would press for trials wherever possible. In some cases we have
funded services in order that a trial can be conducted. Referring
to ECMO which was in the news during the height of the `flu scare,
we funded the service for a while in order that a trial could
be completed because we did not feel confident in saying that
it definitely worked until we had a trial. We try to get the best
evidence we can. Take the service in the south west where a chap
glues an acrylic lens onto a piece of tooth and then transplants
it into the eye. He has done only about 10. It will take a while
before you get a trial going, but the fact is that patients who
were blind can now see in 90% of cases, so you believe it. You
do the best you can.
Q289 Dr Naysmith:
Does cost-effectiveness come into it at all?
Professor Griffiths: Some but
not all of these things will be expensive. If you average the
whole lot they would probably come in under the threshold, but
some things are very expensive. I think you can do some modelling
to estimate where drug companies are really over-charging, and
some are. The trouble is that the way the drug costs are done
in this country is through the PPRS which caps profit rather than
price, so sometimes we do not challenge one or two companies that
I think are overdoing it. You could put in place that sort of
mechanism. There would be a case for working with the rest of
the EU perhaps to try to get tighter prices on some of these things,
but the total amount you gain from it will not be a hill of beans
compared with the total NHS drug budget. Some people may say that
it will save only £30 million or £40 million, so why
bother? If money gets really tight I imagine that that issue would
re-emerge.
Q290 Dr Naysmith:
How is the final decision on whether to buy or not buy a very
expensive orphan drug taken?
Professor Griffiths: At the moment
we thrash it out in the NCG and come to a conclusion on whether
or not it is a good idea. We then propose that to the NSCG—the
folk like Ms Evans—and they argue about it and gets their
finance directors to crawl all over it. Some of it is chucked
out and we end up with a bunch of things which people say look
like a good idea. Those are then commissioned.
Q291 Dr Naysmith:
How long can that take?
Professor Griffiths: We have an
annual cycle and we get them done in the year.
Ms Moss: It has worked very well
for the new proposals around services that have come up. We have
worked very well with the finance and public health directors
and SCGs to agree whether it should be commissioned nationally
or should remain regionally commissioned. Usually they are not
co-ordinated at all. In quite a number of cases this year we knew
that the NHS was wasting more money treating patients badly than
getting a proper service set up where they could be diagnosed,
assessed, given the right treatment and sorted. That is very often
the storyline behind our services. Infrequently new technologies
will emerge which have usually gone to PCT exception committees
and different views have been taken. They are the ones that involve
high-cost services. Those are much more difficult areas. We have
had more difficulty with the system in coming to a consistent
view on patients, and that applies also to ministers.
Q292 Dr Naysmith:
When a new and sometimes very expensive therapy is being developed
for a rare condition how is the patient and the community best
served in the interim? Professor Griffiths, you probably have
an example that is apposite: Eculizumab.
Professor Griffiths: It depends
a little on how the thing has developed. There are two standard
patterns. One is where a particular clinician or a team over a
period of time, perhaps because they have done research on it,
has developed a new service. They gradually get to the point where
their trust says that they keep bringing in these terribly expensive
patients and they cannot get the money back, or it looks like
they are about to retire and perhaps they should recruit somebody
else with that skillset. They then say that if they can get it
nationally commissioned they can stabilise the position. There
is an argument as to whether it does or does not require it and
whether or not they are doing something clever and that goes through
all the process. Those are reasonably straightforward because
they develop over quite a period of time. The other example is
something like Eculizumab where somebody invents a new drug and
discovers almost out of the blue that it works on some condition
he has not expected. Eculizumab was thought originally to be good
for asthma and it turns out to be terrific for an extremely rare
condition of which very few have heard. Surprisingly, they did
a trial and our people were in touch with the clinicians who conducted
it. Everybody thought it would cost about £30,000 a year,
which is expensive but not exorbitant. At the end of the trial
they said that it would be £300,000 per patient per year
and the patient would need to take it for quite a while, possibly
for ever. Some may get better but because it has never existed
before we do not know. Suddenly you have problem because that
looks like it is off the clock. We spent a long time discussing
that. It was then discussed by the NSCG. Between the end of the
trial and our making a decision individual patients were thrown
at individual PCTs or SCGs and there was debate within the individual
regions, so there was a period of uncertainty. Some regions said
no, some yes and so forth. Eventually we arrived at a common position
and it went up to the minister. The minister decided to pay for
it but we thought it was a bit on the dear side. We hoped that
perhaps a different bargain would be struck. However, the decision
was made. It took about six months to chunter through that process.
That was the extreme end of things; it was a lot more than anybody
expected. On modelling grounds one could argue that they are charging
more than is reasonable. I have sent my arithmetic to your clerk.
There are grounds for challenging it, but you have to make a decision
as to whether or not you say to these patients that you are sorry
but you will not pay for this in the UK. I think you can insist
on the numbers in terms of treatment being as close as possible
to one in one; in other words, it works every time you use it.
If something works only one out of five times or gives only a
small gain we would probably say it is not worth it at those prices.
But the issue is: how do you defend that decision? That is where
the difficult process is at the moment. That was discussed when
Carter came along. We need to make sure that those processes are
robust, can withstand challenge and so forth. I have said in my
paper that I am not completely happy with some of the things in
the new consultation proposed, but we have to be able to say that
occasionally there are very small numbers of patients where to
pay over the odds is justified, but we need a mechanism to be
able to argue about price and properly assess effectiveness. We
have most of it in place but there are a few bits left to deal
with.
Q293 Dr Taylor:
Moving on to consultation, the title is Strengthening National
Commissioning. Ms Moss, can you tell us how it is going to do
it before we get Professor Griffiths' objections to it?
Ms Moss: It is a Department of
Health consultation as a team decision with the NHS but we have
worked with the department on it. National commissioning is pretty
strong and as a country we have some very specialist services
that do a fantastic job. The nature of the NHS means that we can
focus on getting these services into very few places in the country,
get that expertise to flourish and control the entry of new services
and not let them go everywhere and increase cost everywhere. It
is a good story. The bit on which we have had a problem is where
new technologies come in that may be pretty expensive and there
is a need for consistent decisions for patients, not a postcode
lottery for them. There are difficult and complex decisions to
be made. Carter set up a set of arrangements; he also said we
needed to review them. With the benefit of hindsight if you were
trying to get a consistent set of decisions you would not set
up a group comprising largely clinicians, then put the proposals
to a group almost entirely composed of chief executives of PCTs
and then put the proposals to SHAs and hope to get something clear
and concise out of it. Essentially, the proposals are to bring
the different stakeholders into a room together and thrash out
those proposals, taking into account all of the different issues
that we need to take into account: the costs, the clinical effectiveness,
the benefits that that gives to patients who often have very painful
and awful conditions, societal benefits and a whole range of other
issues. One looks at those in the round rather than different
aspects in different rooms and then makes recommendations and
puts them to ministers on behalf of patients. That is our aim
and that is the proposal within the consultation. The oversight
of NSCG about whether you get good value for money in the way
you commission is there and I will carry on accounting to them;
we assure them that we will do that. But it is really about the
new services that will come into national commissioning, in particular
new technologies. Let us have a good, effective way to get a quick
decision on whether or not we fund these as a country. It will
always be difficult and painful, but at the moment we do not even
have a robust system. If we felt we needed to say no we probably
do not have a sufficient robust system to withstand scrutiny.
Q294 Dr Taylor:
To say no to the drug for PNH would have been incredibly difficult.
The aims sound pretty good. What are the criticisms?
Professor Griffiths: I do not
have objections; they are slight anxieties if you like. First,
I am not convinced that you need to change the system, but this
is partly because I have sat through so many reorganisations I
have lost count. I think the knee-jerk reaction every time a problem
comes up that we should redesign the committees is total rubbish.
It has not made any difference each time we have done it. Why
not just say to these two committees that they have to come up
with a clear answer and it must be judicial review-proof? They
all understand rules, so they should do it properly. My second
point may be modified by the way the circular eventually comes
out and is implemented. I do not believe it is sensible to have
the minister appoint everybody rather than having them as representatives
as they are at the moment. I think all the stakeholders should
be there. I agree with Ms Moss that it is quite useful if you
have everybody in the same room. I am glad that I shall not be
chairing the meetings. Get all of them there but ensure that their
stakeholders know why they are there and believe that these people
will not go native when they turn up at the NSCG meeting and take
the soft option by saying yes to something they should not agree
to. By all means let the minister appoint the chair but have the
committee clearly representative of the stakeholders who need
to be there with a process that guarantees that when they turn
up they know to whom they are accountable. I think that will give
it a lot more power and will maintain the basis of trust between
national commissioning and the other levels which we have spent
the past two years trying to create. Having chaired NSCG and been
part of the public health community since I was president of a
faculty I know what people thought about in NSCG. We have done
a lot of work to try to put that right and build that kind of
trust. There is a risk that it would be thrown away by these processes.
I already sense some of that distrust turning up in opinions that
I tap outside. It is not insoluble; you can get it right by the
implementation even if you go ahead with this, but you need to
get that right.
Ms Moss: We are out to consultation
at the moment and we hope everybody writes in to say they think
it is a very good idea that the presidents of the royal colleges
continue to be part of that committee and that the PCTs that chair
the SCGs are part of that committee. Some of the most expert PCT
chief executives in the country chair the SCG committees. I believe
that would be perfectly appropriate and that we have an appointments
panel to get the lay representatives and the like. One hopes that
will come out of the consultation.
Q295 Dr Taylor:
So, the presidents of the royal colleges and the best chief executives
should remain there?
Ms Moss: I think that will be
one of the results of consultation.
Professor Griffiths: We need lay
members to be appointed; we also need patients. They are not the
same. Clearly, patients have a vested interest in having the service.
Somebody else has to represent the opportunity cost. If you decide
to pay for some of these expensive treatments you are taking money
away from other services. They may be happy enough with you because
we all feel that nobody should be left out, but we need all those
balances. I am sure it is better to have a clear process of appointment
that does not just disappear somewhere inside Whitehall.
Mr Murray: Ultimately, there is
a political dimension to that which is why ministerial involvement
remains important. What kind of society do we want? Do we want
to help these people in dire need at the extreme or do we want
to follow a rigorous purely bureaucratic approach? We feel very
strongly that there should be an involvement for that reason.
We welcome the proposals. We have not yet finalised our thinking
but we believe that greater robustness in the arrangements will
be no bad thing.
Q296 Sandra Gidley:
Ms Evans, senior officials from the department told us that commissioning
had not really started to work until two years ago. Do you agree
with that statement?
Ms Evans: I read that evidence
with interest. Whilst I do not think it is fair to say that commissioning
did not start until two or three years ago today we have talked
a lot about ways in which the health service has been developing,
for example payment by results, programme budgeting approaches,
developing sophisticated approaches to health needs analysis,
developing and understanding social marketing and how to target
particular groups within the population with health messages.
A lot of these disciplines and approaches have been developing
over time. Over the past, say, three years we have seen a real
acceleration of what commissioning can achieve because we have
PCTs with capability, skills and an appetite for innovation. We
have seen PCTs that are increasingly close to their local authorities
and communities, so they get a really rich source of partnership
and ways to bring about change. It is that combination of things
that has allowed us to see a lot of improvements. In some of the
evidence the Committee has received I was encouraged to see PCTs
giving you very clear examples of their achievements for their
populations. It has really taken off as a result of being able
to use lots of different tools and approaches.
Q297 Sandra Gidley:
Has commissioning started to work properly now or do you still
have quite a way to go?
Ms Evans: It is still work in
progress. The first year of World-Class Commissioning results
has showed a real spread against those competency and outcome
measures. The important thing is about distance travelled. As
long as the next time round we can show we are travelling a good
distance and improving on what we can achieve for communities,
populations and people then we are delivering what we need to
deliver. As we go into the next period, which we know will be
subject to considerable financial pressure, there will be management
cost restraints. It will be all about PCTs working together to
make their money go further in producing capability and levers
for change.
Q298 Dr Naysmith:
Wearing your PCT chief executive hat—it is nothing to do
with specialised commissioning—obviously from what you have
said already you believe that World-Class Commissioning is a good
thing. Is there any real evidence that it has improved patient
care? Can you give any examples of its impact on the work of NHS
Bristol?
Ms Evans: The issue as to whether
it has improved patient care is a big one. In NHS Bristol our
governance committee reviews what we are doing on health improvement;
it reviews what we are doing on commissioning health services,
and it looks at how our organisation is working. In that committee
we look at all the national standards and service frameworks,
so we look at the national service framework for mental health
which sets out all the quality standards in mental health and
looks at how we are doing. We look at the stroke care pathway
to see how we are doing against that. Dementia services are in
the news today. We look at the recent review conducted by our
health authority to see whether we are making improvements. I
believe we can demonstrate that we are making improvements in
health service delivery and the parts in the pathway that go back
to prevention, early intervention and preventing people becoming
ill in the first place. For World-Class Commissioning we chose
10 outcomes of which eight were oriented towards the health improvement
end. As to alcohol misuse, in our PCT and in the core cities we
are campaigning for a minimum unit price because we believe that
will have a big impact. We were delighted with this Committee's
work on it. Therefore, we are concerned with alcohol, smoking,
teenage pregnancy and all the things you would expect in a city.
It is difficult to measure progress on that. We believe we are
making progress on those matters. We also believe we are making
broad progress on the commissioning of health services.
Q299 Dr Naysmith:
Has it helped with the commissioning of mental health services
in Bristol? You and I both know that there have been a few problems
there in the past.
Ms Evans: I can say a number of
things about that. We have an annual assessment against a whole
range of indicators about how we are doing on mental health services.
I am pleased to say that we have improved our performance. We
have a green rating for 20 indicators whereas a year ago we had
only seven. There has been a broad improvement. This is an interesting
example of the use of the different tools available to us. The
PCT recently went out to tender; it invited people to bid to provide
a city-wide primary mental health service. This is the first time
we have had a city-wide primary mental health service. It is part
of a government initiative about improving access to psychological
therapy. The organisation that won that competitive process was
a respected national voluntary organisation called Turning Point.
This is an example of being quite strategic about where you want
to open up the market to bring in new blood and run a different
model of service from that we have run in the health service before
to be very responsive to local communities, particularly those
with different needs. It is a good example of the use of a whole
range of commissioning skills in order to make an improvement
for people.
Chairman: I thank all four witnesses
very much for coming along to help us with our inquiry.
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