Examination of Witnesses (Questions 100
- 119)
THURSDAY 17 JUNE 2004
PROFESSOR STEPHEN
HOLGATE, PROFESSOR
ANDREW WARDLAW,
PROFESSOR JOHN
WARNER AND
DR LAWRENCE
YOULTEN
Q100 Jim Dowd: You are making the
assumption that the level of need is the same geographically across
the country where there is no provision?
Professor Holgate:
We have no evidence from our survey that we did for the CPC that
the BSACI supported that there is any geographic variation in
the UK in this area.
Professor Warner:
There has been a very large countrywide survey of the prevalence
of allergy in children which has shown pretty uniform distribution
across the country. I think it is marginally higher in non-Metropolitan
areas and in Scotland than England, but the differences are very
small.
Q101 Dr Taylor: One other thing.
Is the sort of confusion between clinical immunology and allergy
international?
Professor Holgate:
The Clinical Immunologist has a very wide remit. It is a laboratory-based
specialty, so they run laboratories for diagnosis of complex immune
conditions, and as a consequence their clinical work is quite
restricted to immunodeficiency or complex immune problems where
they develop these auto-immune disorders. Allergy is very, very
patchy. So you will have some clinical immunologists who take
an interest in allergy, just as a chest doctor would or an ENT
doctor, and maybe undertake one clinic a week in that area, and
you will get others across the country doing none whatsoever.
So again, we could really, with the clinical immunologists, park
them with the organ-based specialties in that regard because they
have their own remit to look after, which are complex immune conditions.
Professor Warner:
Can I answer something more about waiting lists? There is a lot
of referral shunting occurring as well, which produces a false
impression. For instance, in Southampton because we are the only
paediatric allergy clinic on the south coast and we are taking
referrals from a vast area, we were asked by our Trust to try
and address this huge waiting list by looking to see whether it
was possible to suggest that referrals were made back to the local
hospitals; and to a certain extent that was possible because some
of our trainees were now working in those hospitals. So we asked
them would they be willing to see these cases, so the letters
are sent out to them with a letter to the GP saying, "We
have transferred your referral back because this person can see
patients", and then the Local District General Hospitals
were saying, "I am sorry, this is not a funded allergy service",
and the letter goes back to the GP, "Sorry, we cannot provide
this." Then the GP writes another letter back to us saying,
"This is not happening. You have got to see them", and
that reduces the waiting time whilst the letter shunts backwards
and forwards.
Q102 Dr Taylor: We picked that up
from your written evidence.
Professor Wardlaw:
It is important to emphasise, because the targets are no longer
any measure of demand at all really. For instance, Tina Dickson
in Liverpool: because of the waiting list problem, she was told
she could only see emergency referrals and she could not see any
of the other routine referrals. So they are managed very aggressively
now, of course. The other point to say about those figures, really
questioning the accuracy on it, I would estimate that just Cambridge
and Leicester alone would see 2,000 new patient referrals in the
first quarter. So I really do not know where those figures come
from.
Q103 Chairman: I am conscious, Dr
Youlten, that we have not brought you in at this stage, but I
think Jim Dowd might change that picture.
Q104 Jim Dowd: There appears to be
a paradox. You say that we lead the world, or that we are as good
as any in the world in research terms. The rest of the picture
you describe though is a very scant and in many places non-existent
practising base. So if you do not have that practising base, where
do the researchers come from?
Professor Holgate:
The practising base has grown around the researchers; hence the
academic specialists to be found at the Brompton Hospital, Southampton,
Manchester, because it is these centres that have actually serviced
the clinics there through our university money, and, in my case,
through the Medical Research Council money, but there is no NHS
support whatsoever for it. So in a way you could say that we have
propagated and kept allergy alive these last two decades purely
on the basis of our interest in wanting to move the discipline
forward. Why we have not been successful is not because we have
not tried. We have had endless meetings with the Department of
Health since 1997 and then, for the last three or four years,
all sorts of people we have met with, and at all levels, we have
been told that this is going to be passed down, and so eventually
we formed the National Allergy Strategy Group—that is why
we formed it following the report—because we were making
absolutely no progress at all by operating through official channels.
Chairman: I would like
now to bring in Doug Naysmith?
Q105 Dr Naysmith: I am very interested
in this discussion. I must apologise, first of all, for being
unavoidably late in arriving This is probably the evidence session
that I would least like to have missed if I had to miss a session.
You are discussing the situation where if you are a patient with
an allergy of some sort you can get treatment at a special allergy
centre, or you can go to a clinical immunology service, or you
can be seen by a chest physician, or someone else who does some
allergy work now and again. Are there any really good figures
to suggest that going to the special allergy clinic means that
you have better outcomes?
Professor Holgate:
There are extremely good figures. In fact Cambridge and Southampton
have done tight audits of their referrals and I suspect the same
is true of the other centres, though I am not certain about that.
Q106 Dr Naysmith: This is published,
is it?
Professor Holgate:
This is part of the reports. I do not know whether it is published.
It has been submitted to the Department of Health as part of our
original evidence to try and get action.
Professor Warner:
There are data published from Cambridge. We have some data on
. . . We have looked at quality of life issues in relation to
referrals again from Southampton, which is published.
Dr Naysmith: But compared
with other places as well, that might be very useful?
Q107 Jim Dowd: Dr Youlten, following
on from what we were saying earlier, the paucity of NHS provision
in this area means that people in disproportionate numbers are
turning to the private sector because of the absence of services.
I wonder if you would care to say a word about the general provision
of allergy services in the private sector and to describe why
patients are having to take this course and what are the consequences
of lack of provision?
Dr Youlten: I do
not know whether my written submission was circulated?
Q108 Chairman: Yes.
Dr Youlten: I would
like to make a clear distinction between the private and the alternative
part of the private sector. My own experience, and the only part
of it that I can speak on with any authority, is in the private
sector, reflecting what goes on in the National Health Service,
and I worked for many years, and still do, in parallel in both
sectors, so the service I offer and the standards I apply are
just the same and the case mix I see is very similar in both parts
of my activity. What I think is of great interest is the other
part of the private sector, that is the fringe sector of both
testing and treatment. I think, on the subject of testing, the
availability of unvalidated tests which people can go straight
to without any referral, through their health food shop, or their
hairdresser, or whoever it may be, they are paying large amounts
of money for tests which are quite unvalidated. I think that has
been something that has damaged patient care and it has also damaged
the reputation of allergy overall: because the general feeling
is either, "We know that there are good allergy tests, so
if you cannot get them from your hospital you might as well go
and pay for them privately", is one aspect of it. The other
aspect is, "We know allergy tests are complete rubbish and
so I am not sending you to a hospital to be given tests there."
Consequently, one way or another, people are getting a very bad
service. I think some of the consequences of people relying on
some of these fringe laboratory tests like hair testing, VEGA
testing, and so on and so forth, particularly in relation to the
advice they are given to modify their diets, can be very damaging.
We expect a new drug, or even a new surgical procedure, to go
through some process of validation and clinical trials before
it is widely acceptable and introduced. People do not understand
at all that tests should go through a validation procedure too.
They should be correlated with clinical conditions; there should
be some estimate made of their utility in relation to patient
care. What is happening is that people are being given lists of
foods that they are advised to avoid, and sometimes they are getting
into serious problems over this. I recall a vivid picture of a
patient at Guys, a lady, something under five feet in height,
very anxious because she had had a relative who died of anaphylaxis
who had herself developed some problem with urticaria, which I
do not think had anything to do with food allergy, she just had
a rash, but she had gone to a fringe practitioner who had given
her a list of foods that she should avoid. When I saw her she
was tottering along the corridor holding a baby that she was breastfeeding,
which was almost as big as she was, and she had been told that
she should avoid milk and eggs and all the things you would encourage
a nursing mother to take. That is an example of the sort of bad
advice, to the detriment of patients' health, that is coming about
through fringe testing. Equally, because of the bad reputation
of that sort of testing, I believe that patients who really could
benefit from proper testing, skin prick testing and IGE tests,
and so on, are being denied access to that and being discouraged
from having what is a very reasonable approach.
Q109 Chairman: Would it be your contention
then, or would you agree with my assertion, that because overall
NHS provision is so poor in this area we are exposing people far
more readily to quacks and charlatans and any kind of passing
fad than in any other area?
Dr Youlten: I do
believe that strongly.
Q110 Chairman: The Heath Care Commission,
of course, is supposed to have a responsibility for regulating
and inspecting the private and voluntary health care sector from
April this year. Do you think they are impelled and are capable
of protecting the best interests of patients in this field, particularly
with regard to complementary and alternative treatment?
Dr Youlten: I do
not really know.
Q111 Chairman: I have seen other
animated movements along the bench.
Professor Holgate:
If they take allergy seriously as part of their broader remit
then they could make a major and important contribution. It is
a lot of work to have to do. It is a large sector out there. The
HCC are not empowered to look at laboratory diagnostic practice,
only treatment practice, so that would have to be a change in
their remit if they were going to examine this: because one of
the big issues about alternative practitioners is their erroneous
diagnoses using these various bits of kit that they have, or their
hair analysis, but if they took it seriously and did this we would
welcome this. This would be an excellent way of helping move the
field forward, but it would be an awful lot of work for them.
Q112 Chairman: Practically you do
not think they have got the resources to do it?
Professor Holgate:
They have so many other things they have to deal with at the moment.
I was involved with a House of Lords Select Committee report on
complementary or alternative medicine. One of the recommendations
that Lord Walton made on that occasion was that greater regulation
should be introduced into this sector; and now, as you are aware,
into acupuncture and herbal therapy. So the sector is now responding
in a responsible way and I think it will improve over time with
allergy being captured in that general regulation. There are one
or two other areas where there are totally untested methods which
are used which are, frankly, dangerous. I was part of a Royal
College of Physicians visiting team to a hospital in England that
undertook a range of diagnostic and therapeutic procedures in
allergy to inspect it, being asked to visit by the Chief Medical
Officer. This hospital had seen 12,000 patients over a period
of six years had used very wide range of diagnostic and therapeutic
procedures, of which had been validated. Not only that, they were
seeing children and there was not a single practitioner there
qualified in child health, they were using treatments that had
never been properly tested using established procedures and, in
fact, the whole activity they were engaged in very alarming and
worrying.
Q113 Chairman: Did they not, as clinical
practitioners, themselves have a view on this while they were
doing it?
Professor Holgate:
We put it to them, and, of course, as you might imagine, the practitioners
at the Centre have had training that is non-conventional and more
based on the basis of patient satisfaction than efficiency as
the criteria upon which they were judging therapeutic effectiveness.
These are private clinics. Huge sums of money are involved here
and the NHS authorities are being asked to pay for it, and so
our recommendations were not terribly glowing.
Professor Warner:
The key problem is that it is on the diagnostic side that the
greatest difficulties occur within complementary medicine. I do
not think we are quibbling so much with some of the treatments,
at least some of them are now undergoing proper evaluation, but
on the diagnostic side there nothing; and it is, frankly, dangerous.
We have an enormous number of anecdotes of people who have been
given false allergy diagnoses, put on nutritionally unsound diets,
children really severely malnourished, under weight, not growing,
really suffering severely; on the other hand, even patients being
told that they were not allergic when they were allergic and relaxing
their avoidance and having life threatening reactions. So this
is the area that requires the most scrutiny. It is the area that
at the moment is not covered.
Professor Holgate:
Alternative allergy practise is now Tescos or Boots, for example.
The first thing you will see as you walk into the pharmacy area
is a whole array of complementary therapies for allergic and related
diseases, and this is a great concern.
Dr Youlten: I think
it is a very sad reflection of the way people have been served
by the allergy services in the NHS, but I can remember several
patients being referred to Guys when I was working there who actually
said "The reason I have come to the NHS is that I have run
out of money. I can no longer afford the fringe tests and treatment",
and, of course, when you got down to it, what they needed was
not the alternative route, it was conventional testing and advice.
Q114 Chairman: In your written evidence
you have talked about the lack of provision in paediatric services,
specialist allergy services?
Professor Warner:
Yes.
Q115 Chairman: Could you expand on
what can be done to address that problem?
Professor Warner:
Yes, I think it is very much like in the adult services, that
we have to go back to setting up the tertiary centres that are
going to provide the training that should be in each health district
to paediatric allergists working with two adult allergists, with
the back-up of the specialist nurses and dieticians that can service
both sides, with the laboratory back-up that is required with
that, who would then be able to train the next cadre of paediatricians.
There will be some paediatric registrars who will go through a
more general programme and maybe have a one-year exposure to allergy
and then have an allergy interest, who will go into district general
hospitals as general paediatricians and will be able to set up
a secondary referral allergy clinic to see the more straightforward
allergy patients. Obviously, we then also would be able to train
GPs to do some of the allergy diagnostic work and treatment in
primary care; and the tertiary service would then be there to
deal with what we estimate is about a sixth of the total number
of cases that require special attention. That is still an enormous
number. In childhood now 40% of all children have some allergy.
Of those, about a sixth require specialist referral, and that
means we are talking, based on the current birth rates, about
40-45,000 new cases a year for specialist referral.
Q116 Chairman: Could you say something
about what happens when children transfer from paediatric services
to the adult allergy services? Is there any lack of continuity?
Professor Warner:
In the best run system, there is a graded transfer. If there is
a good allergy service being provided paediatrically and in the
adult, then there is a seamless transfer because it will be within
the same system. We sometimes run joint clinics for adolescents
to gradually transfer them over, but that is a very precious commodity
that does not exist in many places. That is only where the paediatric
and adults allergists are working together, and, as we have said,
there are only six centres that are doing that at the moment.
Q117 Chairman: So, until the numbers
change, there is likely to be little means of improvement?
Professor Warner:
Yes. I think the other thing to say is that when we say there
are 40% of children with allergy problems and only 30% of adults,
in another 10 or 15 years that will be 40% of adults as well,
because we are talking about a cohort effect here where we are
seeing an increase occurring first in the children, but as they
grow up they are taking their allergy with them.
Q118 Jim Dowd: That is assuming you
cannot effect a treatment?
Professor Warner:
Yes. Obviously my objective is to put all my adult colleagues
out of business by preventing the disease in the first place or
curing it as soon as it arises, but I have to be realistic and
say that my Nobel Prize is on hold at the moment!
Chairman: We will look
out for it with interest. David.
Q119 Mr Amess: Much as we have said
about funding already, it does appear that many of the problems
experienced have been caused by a switch to funding towards PCTs
and towards district hospitals, and already we have heard about
the lack of willingness, seemingly, of the Department to fund
centrally, and we have talked about the Cancer plan and other
issues. Do you consider that the establishment of full-time allergy
clinics should be centrally funded, and would you like to expand
on that if you answer in the affirmative?
Professor Holgate:
It is quite clear from the evidence that has been presented to
you, in written and in oral form, that the current Department
of Health policy in providing allergy services is failing, and
we have persistently tried to persuade the Government to take
on specialist allergy commissioning as a way through all this,
recognising that developing responsibility to the PCT is not delivering
an adequate allergy service all for patients. So far we have not
had any success in being able to raise the profile of allergy
amongst the NHS Specialist Commissioners. You will have heard
earlier today that we have tried to contact a number of them and
received negative responses and frequently no response at all.
So it is up to the Department of Health now to decide how they
are going to respond to this, recognising that further devolvement
down PCTs is not a formula that is likely to work in the current
climate of the NHS; and the only way that the National Allergy
Strategy Group, can see a way through all this is to get specialist
allergy commissioning in place so that there is some central guidance
to help drive the medical practise on the periphery to create
change, as has been so tremendously successful for implementing
the Cancer initiative. Just as they have been successful, we would
like to follow their model, and our report from the Royal College
is a blue-print of that particular way of delivering a service
which is above any single organ specialist. If, in the case of
allergy, we were dealing with single organ disease then we would
not have this problem; it is because we are not that we are falling
between the cracks of all the different ways of trying to generate
priorities within the NHS.
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