Examination of Witnesses (Question Numbers
23 NOVEMBER 2009
Q20 Angela Browning: You do not recognise
it at all?
Mr Belfield: No, in the sense
that PCTs do not dictate clinical practice. If somebody is seen
in hospital for a first out-patient appointment, it is then up
to the consultant in the hospital to decide whether the patient
is brought back. The PCT will not stop that happening.
Q21 Angela Browning: We have been
told quite emphatically by the charitable sector dealing with
this condition that that does not happen. It is quite difficult.
They sort of go back into the system and you have to initiate
the whole thing from scratch for a second or follow-up appointment.
If somebody is in crisis or something has flared up and they need
to see a consultant, the fact is that they have to go through
the whole system again. They are not as most hospital conditions
would be. If someone is on the hospital register, they would be
seen by that consultant again pretty quickly. There is a problem
here and I have been quite convinced from what I have been told
that you should be investigating this. I am asking, through you
Chairman, whether you would investigate this.
Mr Belfield: I am happy to because
I am concerned by what you have just said. I will definitely take
that away. There are examples where PCTs, with their clinical
colleagues, GPs, etc., are putting in place systems to make sure
that the practice in hospital is not over-referring in terms of
seeing people too many times, but that does not sound like what
you are describing to me.
Q22 Angela Browning: No, it is not.
Mr Belfield: Outside the Committee
I will take that away and look at that for you.
Q23 Angela Browning: Thank you very
much indeed. Could I just finally come on to this question that
has already been touched on? This is the question of people who
are diagnosed and are of working age. We see from the statistics
in the NAO Report that 45% of the 580,000 over 16s are of working
age and it is a cost, estimated in this paper of £1.8 billion
to the exchequer of loss of money in terms of people who are having
to give up work. We understand after two years it is quite a common
thing for people not to be able to carry on coping with this condition.
If they were diagnosed earlier and had maintained treatment, they
would certainly be able to have a much more fulfilling life and
carry on working. One of the things that worries me enormously
is where this fits into this new scheme of benefits that the DWP
have responsibility for, because already we have seen with other
conditionsI have to say I have not had a rheumatoid arthritis
conditionI can easily see, if this is one of those conditions
which is not really clearly understood, there is not a lot of
expertise out there, let alone among DWP assessors. Certainly
I have had some very harrowing accounts in my own constituency
of DWP assessors recently in the way they have dealt with people
recovering from cancer etc. I suppose, Mr Nicholson, this is for
you. What dialogue are you having with the DWP about this condition?
Mr Nicholson: We have had dialogue
with the DWP about it but of course the issue is not the condition
itself. It is how it presents and the impact on individual patients.
The thing you have described there was not part of those discussions,
I have to say. Once the diagnosis is made, it is pretty clear
that that is the condition. There is a lot of expertise around
about its treatment and there is a lot of understanding about
what the prognosis for individual patients is. It is not that
kind of open ended thing that you might get with other conditions.
If there is evidence to show that patients with rheumatoid arthritis
are suffering potentially, then we would like to see it because
we genuinely have not seen it.
Q24 Angela Browning: The reason I
am flagging it up is because it seems to me that this is another
one of those conditions where for example people get what they
call "flare up". You could be properly managed in terms
of medication and medical supervision, holding down a job and
then you get a flare up and you are suddenly off work again. I
just wonder how much these assessors and people who sit on tribunals
actually understand this condition when it presents. I say that
because there are so many conditions where you need a specialism
to make a proper judgment about people and their ability to work.
Mr Nicholson: The DWP are satisfied
that they have the expertise and we can certainly help and support
Angela Browning: I hope you will help
them because I do not have your trust and faith in them having
expertise in some of these rarer conditions.
Q25 Mr Mitchell: There seems to be
a real problem of ignorance or, to use the proper medical term,
lack of information on the part of the public and GPs about this
issue which is leading to delays in referring to the doctor or
doing anything about it. I see from paragraph 2.2 that between
half and three quarters of people with rheumatoid arthritis delay
seeking medical help from their GP for three months or more and
around a fifth delay seeking medical help from their GP for a
year or more. I can see from table one that there is a lack of
information on the part of the public about the disease and from
table ten that most people do not know much about it but the correct
answers are usually under 40%. Why is this? Why the delay? They
must be in pain. Do they just sit and grin and bear it or what?
Mr Nicholson: I think Alan Nye
would be in a good position to be able to tell you because he
sees those patients directly.
Dr Nye: I think what you say is
true. Patients are generally sometimes quite stoical and they
do not put aches and pains down to what can be a potentially very
serious, and yet treatable, condition. What you also have to bear
in mind is the very variable nature which rheumatoid arthritis
can present in its very early stages. People can sometimes have
problems for a day or two and then it can settle down and they
can be quite well for a period of time. They tend to forget almost
that this happened. It is only when things tend to snowball and
they have difficulty carrying out their job or other activities
that they sometimes seek help. As I have previously mentioned,
they may be going to their chemist and buying some over the counter
medication which is really very helpful. Again, they put it down
to a trivial problem rather than seeking help. It is unfortunately
due to the nature of the problem in some ways.
Q26 Mr Mitchell: It is the intermittent
Dr Nye: It can be, yes. There
is a type of rheumatoid arthritis called palindromic which presents
in exactly this way, where it is bad for a few days. Then it goes
and it comes back again.
Q27 Mr Mitchell: I see from paragraph
2.3 that there has been no real improvement in the number of people
referred to their GP within three months between 1995 and 2005.
That is amazing. What public education have you been doing to
encourage people to go to their GP?
Dr Nye: There is a number of steps.
One is again this work of the Rheumatology Futures Group with
the Department of Health and the Royal Colleges. We are looking
potentially at some posters which may go up in GPs' surgeries
and other areas which relate to the warning signs which they should
Q28 Mr Mitchell: Have you anything
on the internet? Most people seem to prescribe their treatment
from the internet these days rather than going to their doctor.
What is available on the internet?
Dr Nye: There is a wealth of high
quality internet resources. There is the NHS Choice's website
and something else we are developing as a development of the inflammatory
arthritis commissioning pathway is a patient layer, a layer specifically
designed for patients to be able to easily access high quality,
validated information which will actually cover the whole of the
patient journey from self-care, presentation in primary care,
diagnosis and ongoing.
Q29 Mr Mitchell: If I ring NHS Direct,
what will they tell me?
Dr Nye: I had a look at the web
based decision tool before coming here. Their advice is to go
and seek help from your GP.
Q30 Mr Mitchell: When you get to
the GP, there seems to be a problem in the sense that GPs do not
know enough about it and are tending to refer people for tests
which are not necessarily useful. I see from 2.6 that the blood
tests for rheumatoid factor detect less than half of people who
will eventually be diagnosed with arthritis. The x-rays may well
be normal and therefore do not present the symptoms. Is this because
the tests need specialist interpretation?
Dr Nye: No. I think there are
a couple of points around the tests. Firstly, it is completely
true to say that in early rheumatoid arthritis the blood tests
and the x-rays are completely normal, but I think it is also fair
to say that there are many other conditions which can present
with general aches and pains, for which it is completely appropriate
for the GP to carry out these investigations. I think it would
be remiss of general practitioners not to thoroughly investigate
their patients but to bear in mind that in rheumatoid arthritis
they should not be unduly reassured by normal results. What the
inflammatory arthritis commissioning pathway highlights is that
they should refer on clinical suspicion and not rely on the results
Q31 Mr Mitchell: GPs do not appear
all that well informed. They do not appear to be well educated
in the matter at medical school from what I see in the Report.
Would it not be better if people presenting were referred immediately
to a specialist? Why do you not just instruct GPs to do that?
Dr Nye: I think you have to bear
in mind that 20% to 25% of all GP consultations have this musculoskeletal
element. If we were to tell GPs to refer a quarter of all the
patients they saw, the services would be swamped and completely
overwhelmed. Patients needing expert care
It would be about 80 million people. GPs see about 300 million
people a year so if a fifth of those were sent to hospital I think
they would not cope. The volume that goes to general practice
Q32 Mr Mitchell: What proportion
of those will have rheumatoid arthritis?
About 25% will have a musculoskeletal condition. As we were saying,
for new rheumatoids, the GPs will see less than one a year. Some
of them are more obvious. I think there is a mention in the NAO
Report about 40% of patients going to see a doctor quite quickly
and they get referred. I presume those are the ones with more
extreme symptoms. Many of them do not have that severity early
on and that is where it gets too difficult to differentiate that
from all the other
Q33 Mr Mitchell: It is a vicious
circle, is it not? If they only have one or two cases a year and
they do not recognise the need to refer them to a specialist,
we will have more delays.
Yes. When you say GPs are not informed, I think most people would
know about rheumatoid arthritis but it is the difficulty of diagnosis
in the early days that is the issue. Yes, we need to do more as
we have described about raising the profile and the information
for GPs, but nevertheless in my knowledge of my consultant colleagues,
it is not always easy for them to diagnose either. It is quite
a difficult area in the early stages for many of these patients.
Q34 Mr Mitchell: I see the Report
indicates that specialist nurses can make a big contribution here.
How many specialist nurses are available? How many arthritis clinics
do you have?
I do not have a figure. In the Report I think there are only about
a couple of hundred specialist nurses.
Dr Nye: It is in the 400s, I believe,
just relying on my memory.
Q35 Mr Mitchell: Is that going up?
Dr Nye: I believe it is. I think
you have to bear in mind the NICE guidance on rheumatoid arthritis
which highlighted the importance of multidisciplinary teams and
nurses as a vital part of that team. It was only released in February
of this year and there is a lag of about a year to 18 months to
train these rheumatology nurse specialists. I would like to think
that the numbers of nurses, as the NICE guidance is being implemented,
Q36 Mr Mitchell: This looks like
an area where there would be enormous advantage in spending quite
a bit of money on a public education campaign through television,
leaflets or surgeries or whatever, because the earlier you treat
people the longer they can stay working and the less they need
surgery and all the rest of it. Why do you not go in for that?
Mr Nicholson: I think we are exploring
that as a possibility at the moment. If we are going to do it,
we want to do it right.
Q37 Mr Mitchell: How much would it
Mr Nicholson: It depends what
you do, does it not? It depends whether you have television advertising.
Q38 Mr Mitchell: How long is a piece
Mr Nicholson: Yes. You have all
of those things and also what is effective because it is not a
particular time of the year. It is not like `flu or something
like that where you have a particular time of the year when you
would concentrate your activity. It is throughout the year on
every occasion. I think we are exploring that as a possibility.
We certainly have not ruled it out.
It is difficult though because if you look at cancer, where there
has been a lot more publicity, one of the reasons why our outcomes
were worse in this country was because patients were slower to
go to their doctors. That is with a lot of public information.
As David says, we need to find ways which are proven so that we
can communicate. Otherwise we will spend a lot of money on unnecessary
advertising which does not have the impact we want. For cancer
it is improving but it has been very slow to get people to go
to their GP. That is one of the gaps that we have in this country
Q39 Mr Mitchell: Cancer indicates
the success and the possibilities of these disease campaigns.
There has been a dramatic improvement in people getting quick
opinions from doctors and they are quickly referred to specialists
and to hospital and being quickly treated in cancer, which has
not occurred in rheumatoid arthritis.
That is true but there is still a problem for us in this country
of people who are getting the symptoms before they are seen in
cancer as well. That has not changed much at all.