Examination of Witnesses (Questions 1
- 19)
THURSDAY 17 JUNE 2004
MS MURIEL
SIMMONS, MR
DAVID READING
AND DR
SHUAIB NASSER
Q1 Chairman: Good morning. May I
welcome you to this session of our Committee. May I thank you
for your cooperation with this inquiry. Could I ask you briefly
to introduce yourselves to the Committee.
Ms Simmons: I am Muriel Simmons.
I am Chief Executive of Allergy UK.
Mr Reading: I am David Reading,
Founder and Director of the Anaphylaxis Campaign.
Dr Nasser: I am Shuaib Nasser,
Consultant Allergist at Addenbrooke's Hospital in Cambridge.
Q2 Chairman: In this opening area
of questioning could I just begin by confessing that many of us
perhaps do not know a great deal about this area. One of the good
things about undertaking inquiries is that obviously we learn
a lot from a range of different people and one of the things that
certainly impressed me in terms of the evidence and concerned
me in terms of the evidence we have had is the extent of the problems—which
I do not think many of us were fully aware of. Some of the evidence
talks about a major epidemic of allergy, the UK being the highest
in the world for asthma symptoms, 30% of the population with allergies.
What are the causal factors that seem to have lead to this epidemic,
as it has been termed? You could gain the impression from some
of the evidence that the more cleanliness we have, the cleaner
we are, particularly in terms of the treatment of young children,
the more we are preparing them for a subsequent life facing different
types of allergy. I wonder what your message is about why we are
where we are with this incredibly difficult problem.
Dr Nasser: I think this is a very
important question. We do not have a very good answer for this,
but the best answer is probably something called the hygiene hypothesis
which has been mentioned in the evidence submitted. This essentially
tells us that the immune system has evolved to fight infection
and in our developed world, where children no longer get infections,
the immune system feels redundant. It has really very little to
do, so it goes after innocuous targets. This is now increasingly
seen in medical practice. You have seen the figures, you have
seen the huge increase in the number of allergy cases. Forty per
cent of children are now thought to have an allergy; up to 40%
of the population, and 13-14 year olds especially, have hay fever;
one-third of the population, as you have mentioned, has asthma.
These are very high figures and are amongst the highest in the
world and comparable to some other countries. But essentially
the hygiene hypothesis explains this reasonably well.
Q3 Chairman: As an introduction,
could you tell us why you feel that, despite the extent of this
problem, which is very apparent from the evidence we have, we
are so ill-prepared to deal with the numbers of people who are
affected.
Dr Nasser: It has caught us by
surprise. It has caught the health service by surprise. The doctors
have tried to cope with this in a number of ways, but, because
allergy is a multi-system disease, it affects the immune system,
which means it can affect any organ. Patients will often present
with food allergy but at the same time have very poorly controlled
asthma, they may have eczema and severe hay fever, so it affects
many different organ systems. The way that our health service
works is that if you have a problem with your nose, you go to
see an ENT surgeon; if you have asthma, you go to see a chest
physician; but they are not prepared to treat all the other conditions
at the same time so they then have to refer you on to another
specialist, for example. It has caught the health service by surprise.
We are ill-prepared. We do not have the specialists to deal with
an allergy or a person with allergic disease that affects multiple
systems, and it leads to gross inefficiency and a waste of NHS
resources.
Q4 Jim Dowd: You say it is the way
the health service works, are you sure it is not the way the medical
profession works?
Dr Nasser: I think they are one
and the same thing.
Q5 Jim Dowd: Do you?
Dr Nasser: Yes, absolutely.
Q6 Jim Dowd: But the health service
has to work the way the medical profession works, not the other
way round.
Dr Nasser: I think we are talking
in semantics here, but essentially the health service works according
to the resources at its disposal. Doctors are trained to look
after separate organ systems but, having said that, we do have
the ability, and many other countries have the ability, to treat
allergy, and allergists can be trained to look after multi-system
disorders. We are seeing here that there is a lack of allergy
speciality. This is something that is available and many of the
other developed countries in the world, throughout Europe, the
United States, have very well developed allergists who can treat
multi-system disease. In this country we need to develop education,
starting from medical schools upwards. We need to train doctors
to become allergists and we need to develop centres of excellence
where allergy is a recognised speciality. We can then treat these
patients very adequately.
Q7 Jim Dowd: When you say it is semantics,
I think it is more substantial than that. I think it is the medical
profession and doctors in particular who regard themselves as
the gatekeepers of healthcare provision in this country, and the
NHS has then bent to their demands. If you say we need to change
the training we do—and I have to say that is a fairly common
thread through just about every inquiry we have ever done: it
is said that it is a lack of training in whatever field we have
done—it is for the colleges and others to decide what that
training is, is it not?
Dr Nasser: You can recommend,
though. You can certainly say, "Look, this is something that
is wrong to the health service, this is something that is now
being increasingly recognised." In an allergy clinic tens
year ago, if we saw a patient with a fruit allergy or a latex
rubber allergy, we would call everyone in the clinic round to
talk to the patient. All the doctors, all the nurses would come
round and we would talk with great enthusiasm with the patient
because this was such a rare disorder. Now we will see these patients
two or three times a week and there is nothing surprising about
it. So we have to change. The health service has to evolve with
the changing pattern of illness. That is what we are saying. We
are seeing this new pattern of illness because of our developed
lifestyle and we need now to change with it. That is what a modern,
thriving health service is all about. That is what I hope you
are all about.
Q8 John Austin: We have seen the
map of the provision of allergy specialist clinics, and they are
few and far between. You were saying essentially that people are
referred to different specialists for different conditions and
there is not a holistic approach. That is the point that the Anaphylaxis
Society have made in some of the case examples they have put forward.
They have pointed to one of them as being an example of inadequate
care at secondary level and they quote a five-year old boy with
severe food allergy being referred to a skin specialist for eczema
and a paediatrician for his asthma and there was no referral to
an allergy specialist. In the patient journey where does the fault
lie? Should the GP who made the referral have referred to an allergy
specialist? Or, given the lack of numbers of allergy specialists,
was it right to get the eczema and the asthma seen to and was
the secondary care then to bring in the allergist? Was this a
failure of the secondary care or the primary care referral system?
Dr Nasser: I think the failure
is actually much more basic than that. We have already talked
about education. General practitioners are not educated in allergy.
Medical students are not educated in allergy. They do not understand
about this concept of a multi-system disorder which is becoming
increasingly more severe. Patients do not just present with eczema;
they often have an associated allergic disorder. Many general
practitioners in this country do not know that there are allergy
services and they deny their patients because they say, "Look,
we do not know where we can refer you," and locally they
may not have any allergy services. They do the next best thing
and, after a lot of cajoling—because they often deny the
patient any referral at all—they may refer the patient to
a dermatologist who may then refer them on to an ENT surgeon who
may then refer them on to a chest physician or a paediatrician.
This means a very tortuous journey for the patient and it is only
the very determined few, the determined parents, who can navigate
their way through this jungle. It really is a jungle for them.
The fault does not necessarily lie with the doctors themselves;
it lies in the system. We need to be able to tell patients/general
practitioners that there are services out there—not yet,
but hopefully as a result of this inquiry there will be services
out there—and they can be treated in a much more efficient
manner—a much more efficient manner.
Q9 Mr Amess: Our Chairman put a very
direct question to Dr Nasser, who gave us an answer which certainly
caught our attention. It is very interesting to notice the interest
in this inquiry compared to obesity but I bet you by the time
we have finished this short inquiry there will be much more widespread
interest in this subject because of course people are dying as
a result of these things. You only have to visit a school and
ask to have a look in the medicine cupboard: It falls open with
all the nebulizers the children have. We are going to have an
inquiry into the pharmaceutical industry. Every summer there is
a so-called new product that is going to cure hay fever, but,
as we know, it does not, it gets worse and worse. You go to a
supermarket and there are all these gluten-free products, and
it is getting worse and worse and worse. But I just wanted you
to clarify something. You are saying that the reason for all these
allergies now is that we are all cleaner—which is a showstopper—and
the immune system is looking round for other things to deal with;
for instance, people have peanut allergies and all these things.
Dr Nasser: It targets innocuous
targets essentially. The immune system is a vibrant organ within
us. It has to have something to do. If there is no infection out
there, then it targets other innocuous targets. And, not just
that, but once it targets them it is actually the fall-out from
the targeting that causes the symptoms. It can target pollen,
sure, that is fine, but it is actually the way it targets it and
the over-reaction of the immune system, the hypersensitivity that
results in all the additional symptoms.
Q10 Mr Amess: I can understand an
army of people out there saying, "My, God, David, this is
just a recipe for hypochondria. We will all be walking around
worried about allergies," but it is real and it is happening.
With all the brains that we have in this country—and then
we will get back to the agenda, Chairman—is there a group
of people working on trying to get the immune system as you have
described it involved in something else other than making us all
allergic to these different things?
Dr Nasser: Absolutely. There are
some real brains behind me working on this, actually. We know,
for example, that we can cure some of these diseases. This might
come as a surprise to you. One of the patients in my patient survey
is an airline pilot who had very severe hay fever—so much
so that he had recurrent sinus infections and had to take time
off work. It threatened his pilot's licence. Imagine if you were
a passenger on his plane and he just could not stop sneezing as
he came into land, that would certainly be a problem. We have
cured him of his hay fever. His hay fever is now no longer there
because we have desensitised him. It has taken us three years
but we have desensitised him. He is cured. There are certain things
we can cure. As time goes on, we will be able to do more of this.
There is a lot of research going on worldwide to enable us to
do this.
Chairman: Let me ask a very naïve
question—because only Richard here is medically qualified,
so he understands these issues in a way that probably we do not,
and our scientist is not here this morning. If one of the problems
is that our children's systems are unprepared as a consequence
of our hygiene, can we not introduce some harmless grime in early
years? John, say what you just said.
John Austin: My grandmother said, "You've
got to eat a bit of dirt before you die."
Q11 Chairman: It is a serious point.
Are there not the means whereby we could recreate that in a harmless
way that would protect our children?
Dr Nasser: Absolutely. That is
one of the lines of research, in fact, to introduce this at a
young age, and to take out the positive aspects of the grime,
as you so eloquently put it.
Q12 Chairman: Mrs Simmons, in respect
of your work, your organisation, what are the experiences of the
patients who come to you? What do they tell you about their experiences
of the NHS and their attempt to get help for their problems?
Ms Simmons: The major problem
is getting a referral. This is the whole problem. The general
practitioner, because they do not have training in allergy, are
either very dismissive or they will try to find out where an allergy
clinic is but then it often comes down to a funding issue or a
distance issue. The main thing, though, is that the average patient
is abandoned, so they turn to Allergy UK, the Anaphylaxis Campaign,
and we really are propping up the NHS. We provide a very wide
range of fact sheets but we are not medically qualified. We try
very hard to support patients and to try to get them to see an
allergy specialist, but it is very often that at primary care
level it is simply not taken seriously. They can be dismissed
as hypochondriacs. There is not the help there. Could I read a
very short email, which is very typical of what we receive.
Q13 Chairman: This is from a patient,
is it?
Ms Simmons: This is from a patient,
yes. "Thank you so much for all the information. It has been
hard to get someone to listen to me. My local GP surgery have
no time to something as `minor' as hay fever. I even struggle
to get repeat prescriptions. It is a pity they do not see me when
my nose bleeds, when I am sneezing so much and can't see because
my eyes have swollen so much they have closed. I have briefly
looked at the link you suggested"—which is the BSACI
website—"and found that Camberley (this is only 15
miles away) is extremely convenient." This patient has been
going repeatedly to the GP. Fifteen miles down the road there
is a clinic that could treat and help her.
Q14 Chairman: They are not aware
of that, presumably.
Ms Simmons: They are not aware
of it. The caring GPs actually often will ring us and the sad
thing is that very often a GP will say, "I know nothing about
allergy, can I have your fact sheet."
Q15 Chairman: You are saying that
both your organisations are doing, in a sense, what the NHS should
be doing.
Ms Simmons: Yes.
Q16 Chairman: Who funds you? Where
do you get your money from?
Ms Simmons: The public.
Q17 Chairman: You are not in any
way connected to the pharmaceutical industry at all.
Ms Simmons: No.
Q18 Chairman: You get donations to
keep you going.
Ms Simmons: Yes.
Mr Reading: And we struggle of
course. Our members are very, very committed but they have limited
funds and we struggle to keep going really at times.
Q19 Chairman: So there is no funding
from the Department of Health or local PCTs or any NHS provider.
Ms Simmons: No. Allergy UK does
receive a section 64 grant from the Department of Health which
helps us to run our support network.
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