Examination of Witnesses (Questions 40
- 59)
THURSDAY 17 JUNE 2004
MS MURIEL
SIMMONS, MR
DAVID READING
AND DR
SHUAIB NASSER
Q40 John Austin: In terms of being
able to identify the allergens which are the triggers, a lot of
the written evidence we have had suggests that people have waited
a very long time until they could discover what the triggers were.
It has been said that apart from the extreme ends, where desensitisation
is needed, risk can be reduced by avoidance of certain things
if you know what you are allergic to. Is the basic skin test for
identifying the allergens one which has to be carried out in the
specialist allergy centre, or is it one which could be done fairly
easily in primary care with appropriate training of staff?
Dr Nasser: Skin testing, on the
whole, is fairly safe, but there are cases of very severe allergic
reactions as a result of skin testing. It is important that the
person who carries out the skin tests recognises this and is prepared
to deal with the consequences, and is able to resuscitate the
patient if required and has the facilities to do so. I think a
lot of general practitioners are reluctant to do this, especially
as we have a history of severe allergic reactions in primary care
during desensitisation. So there is a natural reluctance to do
this. A better way would be for there to be a readily accessible
clinic in secondary care, that patients would have ready access
to and they could just go along and be skin tested by nurses.
GPs would have access to this. It is important, though, that the
skin tests are appropriately interpreted because a positive skin
test does not necessarily mean you are going to have an allergic
reaction to something. It is important to interpret it in the
light of the clinical history. So there are some more complex
aspects of this. Sometimes you have to undertake higher dose skin
tests, which are more technically demanding and need even greater
skill in interpretation. Although in theory they could be done
in primary care, a better way would be for them to be readily
available in secondary care and that the general practitioners
had ready access to this and ready access to someone who could
interpret them.
Q41 Chairman: One of the issues in
which we as a Committee have taken an interest is what is generally
known as tele-health and e-health, where you can electronically
connect, so your primary care setting with a secondary or tertiary
setting. In terms of dermatology, I have seen this working quite
successfully. Bearing in mind we are never going to get, certainly
in most of our lifetimes, the kind of level of tertiary provision
that we would want to kick on the kind of provisions that obviously
are necessary, are there any possibilities within health, if you
follow me, in terms of your area?
Dr Nasser: Do not be so pessimistic
about not being able to get this. We should not start from that
premise. We should say, "Look, we have really got to go for
this"!
Q42 Chairman: I am considering myself
completely ticked off!
Dr Nasser: I think dermatology
is very different. With dermatology, you have a rash and you can
recognise it. This is a challenging subject. This is multi-system.
It is not just the illness itself, it is the burden of anxiety
that patients talk about. They need to be able to talk to someone
who understands their problems.
Q43 Chairman: What I am trying to
say to you—and I have seen this done with psychiatric patients—is
why is it not possible for a patient to go to a GP and talk on
a camera to you in your hospital and you interview that patient
with the GP sitting beside them about managing their care and
looking at what they need to do. I take your point that if they
are doing testing that could result in a reaction that needs specific
medical treatment that is not available there, but are there not
things that could be done to enable you to reach out to more people
further afield? I am particularly conscious—as I was remarking
earlier on—that, looking at the map, from Yorkshire we have
to go miles to get anywhere. Yorkshire is bigger than Wales and
Scotland virtually. We have no provision in the tertiary sense
at all according to the map we have and our information. Is there
not a potential to do something to connect you down the line to
people, where we could do more than we are doing now?
Dr Nasser: Ultimately the patients
have to be tested. Otherwise, we will remain in a situation where
children are told, if they have had an allergic reaction to, say,
milk from a very young age, "You are much more likely to
be allergic to nuts, you are much more likely to be allergic to
eggs," and we will end up with a lot of malnourished children
who are avoiding many more things than they need to. Allergy is
not just about identifying what you are allergic to but identifying
what you are not allergic to, to allow the child to be able to
lead a much more normal life. This is something that is fraught
with stigma. These children grow up with stigma.
Q44 Chairman: I think the answer
to my question from what you say is e-health has a limited use
in addressing the problems we have at the present time. I think
that is what you are saying.
Dr Nasser: It is probably useful
in the support stages. After the initial diagnosis has been made,
it is probably useful there and I am sure that something could
be done. But initially they need to see someone who can explain
the problem to them.
Q45 John Austin: You have mentioned
milk. What evidence is there to link the early feeding of cows'
milk to young infants with later problems in terms of allergic
reactions?
Dr Nasser: That is a difficult
question. We know that breast milk protects from allergic disease.
Breast milk is good. The early feeding of any type of allergen,
be it eggs or nuts or milk may be a problem during either lactation
or pregnancy or in very early infancy, but we don't fully understand
this. There is probably a susceptible time when the child is likely
to developing desensitisation, but we do not fully understand
what that susceptible period is. That is not a question that I
think anyone can easily answer.
Q46 John Austin: But you are saying
that there is evidence of showing a very clear correlation on
the reduction of risk if the child is breastfed.
Dr Nasser: Yes.
Q47 Mr Amess: When Mr Reading told
us he had lost a daughter as a result of peanut allergy, I think
that more than emphasised how serious the problem is. We are hoping
that by having his inquiry minds will be concentrated, and we
hope to draw up recommendations which will be relatively easily
obtainable, given that there is not a bottomless pit of money
that is available. We have already touched upon the evidence we
have received from people saying that allergy is not taken seriously
enough. GPs are very busy. They are each day receiving a pile
of new products from the pharmaceutical companies. How on earth
can they keep on top of it? We cannot necessarily blame the GP
that they get the diagnosis wrong, etcetera. Would the three of
you just give us a layman's guide of how you really think the
primary care sector for the treatment of allergies could improve
relatively quickly in some tangible way, because, let's be honest
about this, we cannot say, "Right, allergies on hold. No
one is going to have any of these allergies for the next six months/two
years." People need help now. Is it better communication?
Is there something we can do with the primary care sector?
Ms Simmons: We would definitely
like to see more training. The ideal situation, yes, is to have
centres where from those leading centres training could go out,
but that is expensive and it is not going to happen quickly. We
know this. There is a very real wish for education at primary
care. We run training courses. I have two master classes that
are happening very shortly. Both are oversubscribed, all from
GPs wishing to learn more about how to help their patients in
allergy. If money could be directed into educating the GPs and
also increasing the funding to encourage them to deal with allergy.
Unfortunately, we know at the moment the daily grind—which
is really what I am concerned about. When somebody has an anaphylactic
reaction, they have to be dealt with and it is all systems go.
It is the people who are trying to cope every day with an illness
that is downright debilitating. It affects their family life,
their social life, their working life very importantly, and these
are the people who are not getting the help. That is why we feel
the education should be put into primary care. We have some wonderfully
knowledgeable people in the world of allergy—many of them
are sitting behind us. We should be providing a lot more training
for primary care to enable people to be dealt with.
Q48 Chairman: In the work you do
with GPs, do you get any impression that the younger, more recently
trained GPs have any more awareness of this area than the older
ones? Is there any indication that their training is reflecting
the trends that we are seeing here of this hugely growing problem?
Ms Simmons: Yes, with all due
respect to the gentleman. They are probably rather more broadminded
and they are also more up to date in the latest science.
Chairman: Richard is very broadminded!
Jim Dowd: It did take him three days
to work out he had broken his arm!
Q49 John Austin: That is because
he has been desensitised!
Ms Simmons: Unfortunately there
is still a lack of training within their main training as a doctor,
and that definitely needs addressing, but we also desperately,
desperately need to do something about the GPs that are out there
now. They do want to learn, and that is the main thing.
Q50 Chairman: You basically provide
for this need, but do you draw from all over the country or just
the immediate area where you are located?
Ms Simmons: No, we deliberately
put our master classes in various parts of the country.
Q51 Chairman: So you move around.
Ms Simmons: Yes, we do. I would
say that it is not actually right that charitable funds should
be used in that way.
Chairman: We understand the point you
are making.
Q52 Mr Amess: As far as the waiting
times are concerned for this area, we have been given a table
that indicates that in the last quarter of the year 2003/2004
only one patient waited between 21 and 25 weeks and a further
one waited 26 weeks or over from receipt of the GPs written referral
until first out-patient attendance. What is your feeling about
the waiting times?
Ms Simmons: I have to say I am
somewhat surprised at those. The feedback we are getting—and
I hate to stress this, but I will say it again—is, number
one, these are the lucky people who are getting a referral. But
we are hearing on the helpline that there is a big gap between
the time the doctor refers and the time the patient gets the appointment.
That is what we are hearing on the helpline. Instead of it being
at that end, so it is a true reflection of the time they are waiting,
they are not being given the appointment very quickly. That is
what we are hearing.
Q53 Chairman: Have you seen the Department
of Health submission, the figures to which David has referred?
Ms Simmons: Yes, I have.
Q54 Chairman: You are sceptical,
quite clearly, about the accuracy of those figures.
Ms Simmons: Yes, I am.
Mr Reading: I am too. Well, I
cannot deny that those figures are possibly true, but we hear
a different story. I must say, being at the extreme end, if a
child does have a severe allergy to peanuts or kiwi fruit or sesame
seeds or whatever and there is that anxiety—and Mr Amess
mentioned my daughter, and a lot of other parents think they are
in the same situation as I am—they are going to find any
wait of, say, more than 12 weeks an absolute nightmare, if a child
is believed to be at risk of a fatal reaction. Often the truth
is different and it is manageable, most certainly manageable,
but it is only manageable when you have that proper care and proper
information and guidance. To wait probably even more than a month
for some of these parents is to them an absolute nightmare. Realistically,
the tales we hear are of 11 months/12 months between the time
they first see the GP and when they actually get to see the consultant,
and then sometimes there is a wait to get the test results back,
so it can be many, many months. Whilst not denying those figures
are true, it is a different story that we are hearing.
Q55 John Austin: You mentioned a
couple of foods. I am also wondering to what extent a change in
diet and an alien diet may have some influence. Kiwi fruits and
sesame seeds have only been in this country within the lifetime
of those of us in this room. Peanuts did not really arrive here
in numbers until the '40s and the groundnut scheme. There has
been a significant change in our diet and the eating of things
which are not natural in this part of the world. Is there any
evidence that dietary change is a contributory factor?
Dr Nasser: Certainly for allergy
to occur you need exposure in a susceptible individual. Peanuts,
for example, are very high in protein and protein is what causes
an allergic reaction. Having said that, we know, for example,
that people in different parts of the world eat large numbers
of these. For example, the Chinese eat lots of peanuts but they
do not get a lot of allergy, but when they move to this country
they do. It is not just the food itself, it is to do with the
environment and a genetic background. It is a mixture of a number
of things. After all, egg and milk allergy occur, and we have
been eating those for a long time. We are seeing increasing amounts
of fruit allergy, apple allergy, and certainly those things have
been eaten for many years in this country. It is not just a simple
explanation of foreign proteins, no.
Q56 Jim Dowd: Is this mirrored across
comparable societies, other parts of Europe, North America, those
in similar states of development?
Dr Nasser: Absolutely. The increase
in allergy is being seen right across the developed world. The
highest incidence of allergy is probably seen in New Zealand/Australia
and in this country but also in the US and certain other parts
of Europe.
Q57 Jim Dowd: New Zealand is often
held up as an idyll of healthy lifestyle.
Dr Nasser: Enormous numbers of
them are allergic to house-dust mite.
Q58 Mr Amess: Why do so many people
have a wheat allergy now? That is a basic part of diet. The supermarkets
are producing things to help people with coeliac disease. It seems
extraordinary.
Dr Nasser: Yes. Again, we cannot
answer why we are getting increase in allergy, we can only speculate.
But, again, it is the broad increase and it is a true increase.
Although we are getting better at recognising it, it is a true
increase. As I mentioned previously, the hygiene hypothesis is
a good one. There are different types of wheat allergy. There
is a type of wheat allergy that causes similar reactions to, say,
nuts; there is a type of wheat allergy that only manifests after
exercise; and there is a coeliac type of wheat allergy. There
are so many different types of problems that you can get with
wheat and it is important, again, that you go to see an allergy
specialist to be able to sort out what type you have.
Q59 Mr Amess: You were both concerned
about the waiting time figures and you will be pleased to know
that in a later session the minister will be giving evidence to
us and that will give us the opportunity perhaps to clarify some
of these points you are concerned about. Dr Nasser, I wanted you
to say something about hospital allergy services. This is not
to knock you down at all but I was fascinated when you were saying,
"Go along and get these desensitising tests." When I
had personal experience of this process many years ago, it took
a long while. I think I was given 26 tests and I was positive
to everything, including eating strawberries, and I came to the
conclusion life is not much worthwhile living if I am going to
fiddle about with different things. It just seemed one long drawn
out procedure, where we live in a climate where you just want
to take a tablet hoping that will cure things, etcetera, and the
hospitals are under such strain that if you say that is the only
way to fix things, so be it. So I am not going to have an argument
about the veracity of what you said, but how do you think we could
improve the position of hospital services to treat these allergies?
Dr Nasser: I am sorry you had
such an awful time. If you were to go to see a specialist in this
field you would probably find you would have a different experience.
Come and see us up in Cambridge, if you like, and I suspect we
will probably change things a little bit and improve your quality
of life.
Jim Dowd: He is allergic to Cambridge,
unfortunately!
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