Examination of Witnesses (Question Numbers
23 NOVEMBER 2009
Q40 Mr Mitchell: The number of people
treated quickly has changed.
I agree. All I am saying is we are looking at the public information
approach to try and get the lay person's knowledge higher. Even
in cancer we have found huge difficulty to make that effective
on that particular area I am talking about.
Q41 Mr Mitchell: I would not discount
the possibility of having a campaign on this issue, given the
benefits which the Report indicates. Can I just move on to the
question of referrals from the doctor to the specialist? What
is the reason for the delays there? Is there a problem with the
procedures of some primary care trusts?
Dr Nye: No. I think as soon as
a GP suspects there may be inflammatory arthritis they will do
a referral. I am not aware of any delays which would interfere
with the process. It is actually raising the suspicion. It is
making that initial diagnosis in primary care which is important.
I am not aware of any other delays with the referral process.
Q42 Mr Mitchell: What is the potential
for treatment? Unremittingly destructive, vroom. Relapsing and
remitting is vroom, vroom, vroom. That seems to be in the majority
of cases and then suddenly in 10% to 15% of the cases it is just
a short impact. Do we know why those differences occur? Is it
a failure of treatment?
Dr Nye: No, we do not know why.
There are different patterns of presentation and progression of
rheumatoid arthritis. We know certain patterns of symptoms and
blood results are quite bad prognostically, but again as to why
one individual with it has the relapsing form and another individual
has the gradually progressive we do not understand why that is
Q43 Mr Mitchell: Are the ones that
are unrelentingly destructive the ones that are referred to surgery?
Dr Nye: No. If you manage to get
patients controlled within the first year of their illness it
is possible, with some of the modern drugs, to prevent much of
the pain and disability that traditionally patients with rheumatoid
Q44 Mr Mitchell: They can carry on
Dr Nye: Yes.
Q45 Chairman: As this is being shown
on the television, describe for the public what they should look
for in these people. What signs are there? What should they be
Dr Nye: Part of the campaign we
are looking at with the Futures Group has borrowed something from
the popular TV show, The X Factor and we are calling it
the S factor. It talks about swelling, which is swelling of the
joints, particularly of the small joints of the hand.
Q46 Chairman: This happens quite
quickly, does it?
Dr Nye: This can happen overnight.
You can go to bed normal, so to speak, and wake up almost unable
to move, unable to fasten your buttons or fasten your bra as a
woman. Swelling is one. The other is stiffness. Patients with
rheumatoid arthritis often complain of profound stiffness of the
joints. The other is a test called the squeeze test. That is the
third S. It is where you actually compress across the knuckles
of the hand or the same joints in the feet and it is painful.
That is the most validated examination test for an inflammatory
arthritis. There is a final S factor point for patients with ankylosing
spondylitis where young adult males develop quite severe buttock
pain and morning stiffness in their back. The condition there
is almost harder to diagnose than rheumatoid arthritis with average
delays of two years before diagnosis. That is a real challenge
to try and get patients to present and for doctors to identify
and refer early.
Q47 Chairman: Given that this is
in many cases an utterly debilitating disease, are you getting
this message out to people with posters in surgeries and advertising
campaigns? The signs we are talking about seem to me to be fairly
clear and simple for the public to understand.
Dr Nye: I have simplified things
quite significantly but I think what is important is to raise
general awareness amongst primary care clinicians and for the
patients that every ache and pain which they may have occasionally,
if you have these other signs, can be serious. This is still work
in progress and we would hope to be able to produce these posters
and education within a few months. Hopefully in the near future
we will be able to take this further.
Q48 Chairman: How many of these symptoms
that you are talking about which can happen very quickly could
just be ordinary arthritis?
Dr Nye: Quite a few.
Q49 Chairman: Like in the squeeze
Dr Nye: Yes, but what we would
hope GPs or practice nurses would consider is that if they have
a patient with these we want them to think to themselves: could
this be an inflammatory arthritis? If they think that and there
is a possibility, they should act and refer for a specialist assessment.
Because the diagnosis is so hard to make in some cases, what is
important is that GPs or practice nurses act on suspicion and
do not rely on blood tests, x-rays or other things. We are trying
to speed up that patient journey.
Q50 Chairman: As your colleagues
said, GPs are seeing 80 million people a year with these sorts
of aches and pains.
Dr Nye: That is right.
Q51 Chairman: Presumably all the
incentives are the other way, are they, because they are saying,
"I cannot refer too many people"? That is the difficulty,
is it not?
Dr Nye: Most GPs are incentivised
to do the right thing for their patients. That is what most GPs
are in the job to do. What we are trying to do is to get them
to think about the possibility of an inflammatory arthritis. If
they feel that exists, then we are asking them to act.
Chairman: Thank you very much for that.
That is a very clear exposition. I wish all our witnesses were
as impressive, Mr Nicholson, particularly permanent secretaries.
Q52 Keith Hill: Can I begin by saying
how much I appreciated the NAO's DVD called "Patient Stories"
which is attached to the NAO Report? In this Committee we most
often deal with just money but in this case we are actually dealing
with human beings and a lot of pain. I thought the DVD brought
home exactly the human dimension of this particular inquiry which
is so important. Although we deal primarily with money in this
Committee, there is a value for money angle in the appropriate
treatment of rheumatoid arthritis because, I think as the NAO
Report demonstrates, if there is one area of medicine where early
interventionmaking the investment to stabilise the conditioncan
produce an economic return to society, then this is the example
above all. What was so obvious in the DVD and those courageous
people, if I might say so, who agreed to go on the DVD was their
desire to go on working and making a contribution to society.
That is I believe something that we should want to encourage.
I want to focus on the issue of relationships and communications
between, as it were, the front line of those who treat rheumatoid
arthritis and the commissioners. Let me just go back to one or
two questions that have already been asked again. First of all,
this issue about the extent of musculoskeletal problems presenting
to doctors. This is probably one for David Nicholson. Let me ask
again: are you satisfied that there is a proportionate amount
of training in a GP's education and degree which is devoted to
musculoskeletal issues of which rheumatoid arthritis is one case?
Mr Nicholson: No.
Q53 Keith Hill: What are you going
to do about it?
Mr Nicholson: In a sense, that
is why we have asked Rheumatology Futures and the Royal College
of GPs to give us some advice about how we might best do it. It
is relatively easy to say no, it is not, and we need to do more.
Unless you extend the amount of time you spend training people,
something else has to go. That is quite a difficult set of issues
to deal with. In principle, we think that is absolutely right.
We want to encourage training to be changed in that way but we
are asking for advice about how best to do that.
Q54 Keith Hill: I suppose the fact
that, as we have heard frequently, up to 25% of cases presented
to doctors are of that character would certainly suggest that
more extensive training should be given in that area, because
that is actually the best preparation for being a GP.
As a general point, we want to extend the years that GPs are in
training, currently it is three years once you have left your
hospital work. Certainly we are going to go to four years and
the Royal College of GPs is recommending a five year programme
because of the sheer complexity of most of the conditions that
now are in primary care, to take your point. We are looking to
extend the training before you become a fully qualified principal
in general practice.
Q55 Keith Hill: That is extremely
interesting and something new to me. That would make the British
experience I think more comparable to that for example of our
continental neighbours. That is a different matter. Let me come
back to this issue of the musculoskeletal conditions. Perhaps
this is one for Dr Nye. How does the severity of rheumatoid arthritis
compare with the other conditions a doctor or GP is likely to
come across in the course of his or her work?
Dr Nye: A doctor sees a full range
of possible conditions from those who are terminally ill to those
with quite trivial illness. Rheumatoid arthritis is a very disabling
illness and often impacts on every aspect of a patient's life.
I think what is important in managing conditions like rheumatoid
arthritis and the other life long, long term conditions is the
concept of having a multidisciplinary team, primary care and the
specialist services working together to deliver the best standard
of care for the patient. I think rheumatoid arthritis is a great
example where it is possible for specialist services and primary
care to work in harmony together with patients receiving the best
care on a day to day basis from their GP and, when things are
not going well or when there are flare ups, maybe seeking expert
help from a member of the specialist team, whether that is a consultant
or a nurse specialist. What the Inflammatory Arthritis Pathway
encourages is for commissioners, primary care and specialist services
to work together to look at redesigning services. Rather than
working in separate bunkers between GPs and hospitals, you are
actually working together to deliver coherent services for your
Q56 Keith Hill: You have anticipated
some questions I wanted to ask about IAP, the Inflammatory Arthritis
Pathway. That is supported by the Department of Health and I understand
that you played a part in developing it. Can you say a little
more about what it is and the benefits you expect it to confer?
Dr Nye: Sure. It is an 18 week
commissioning pathway. Its primary purpose is to describe an idealised
patient service. It covers the complete patient journey from self-care,
initial diagnosis, the patient journey in primary care covering
common presentations, investigations and treatments that can be
managed in primary care. It then moves on into specialist services,
again mirroring the presentation, investigations and treatments
that are delivered from specialist services. Finally, there is
a section on tertiary care where there are highly complex needs
for patients because, as I am sure you are aware from reading
the Report, rheumatoid arthritis can sometimes be a disease of
the whole body involving the kidneys, the eye and other organs.
Some patients can be highly complex and require a very, very skilled
degree of clinical input. The pathway describes the whole possibility
of what patients with inflammatory arthritis may need and actually
encourages clinicians and commissioners to work together to look
at redesigning services locally.
Q57 Keith Hill: I am sure it is absolutely
the right way forward. Presumably the reason why you, others and
the DoH have developed it is because actually the reality falls
far short of that at the moment because there does seem to be
a good deal of evidence that primary care trusts, for example,
do not seem to have good information on the extent and costs of
rheumatoid arthritis in their local populations. They seem to
provide somewhat limited services on the whole and equally GP
practices also seem to be deficient in commissioning rheumatoid
arthritis services. Is that a kind of reality that you would recognise?
Dr Nye: I think the effect of
NICE guidance, the National Audit Office Report, the Inflammatory
Arthritis Pathway is that they are a force for good. They are
a force to make local health communities look at the services
they are delivering and ask themselves questions on where they
can improve. I think it is definitely a force for change for the
Q58 Keith Hill: Would you be surprised
to learn that some clinicians report that they have no direct
communication with commissioning organisations as a result of
which the complexity of the disease is simply not recognised?
Dr Nye: Speaking personally, in
Oldham where I work I have a fantastic relationship with our commissioners.
Aside from my role as a GP, I also run one of these early arthritis
services covering rheumatology, orthopaedics and chronic pain.
We have an excellent relationship with our commissioner. I think
it is possible as a clinician to foster and develop good relations
with your commissioner. I think the pathways encourage you to
sit down and discuss problems together rather than again acting
Q59 Keith Hill: Lancashire seems
to be rather good at this sort of thing because the Members of
the Committee have received a rather impressive document about
the rheumatology unit in Bolton. Lancashire is obviously a bit
of a pace setter in this regard. Is it happening elsewhere?
Mr Nicholson: It is not happening
elsewhere in quite the way we would want everywhere. I am sure
Gary will talk a little bit about commissioning generally. In
a sense, that is why the pathway is so important. That is why
the NICE guidance is so important. That is why the NICE commissioning
guidance coming out at the end of this year will be so important
because there we are setting a kind of national benchmark, in
a sense, for commissioners about what we expect in the future.
Mr Belfield: In preparing for
this, I looked around the country to see what PCTs were beginning
to do because there is a degree of criticism in this Report. I
think it is fair to say that last year we asked PCTs to do a needs
assessment of their population about the things that were really
affecting health. They chose things like stroke, cancer, heart
disease, etc. to focus on in terms of their commissioning decisions,
but we are seeing this yearcertainly in the last six monthsan
increasing look with PCTs thinking about long term conditions.
Just in the last month or so, I have heard of three PCTs that
are actually changing their services for arthritis in terms of
self-care education, for example in Norfolk and Portsmouth. Tameside
and Glossop have a consultant led rheumatology service going into
the community. If this Committee were to ask again, say, in 12
months' time, I think you would see a very different picture with
PCTs beginning to reflect much more about long term conditions
in their commissioning strategies.