Examination of Witnesses (Questions 660-679)
PROFESSOR JOHN
HARPER, PROFESSOR
JONATHAN HOURIHANE,
DR WARREN
HYER AND
DR MARK
ROSENTHAL
7 MARCH 2007
Q660 Lord Colwyn: It is a sort of
do-it-yourself immunotherapy?
Professor Hourihane: We would not advise that.
There is the risk of an extreme allergic reaction which may be
augmented by a period of elimination. That has been well-described
in the dermatology literature, particularly by Tim David from
Manchester. So avoidance and then casual reintroduction has caused
problems.
Dr Hyer: This is, surely, effectively, an argument
that these children (and the numbers are not small; we are talking
about 2 per cent of all children have cows' milk protein allergy
of some form) need to be seen in services outside primary care
with access within a few weeks of the diagnosis. Some of these
children are three months and they cannot wait 12 weeks on a waiting
list; they may have failure to thrive; they may be breastfed and
the mother does not know what other foods to give this child;
they are told to over-restrict unnecessarily and you can see that
this ultimately impacts on these children, not infrequently they
will end up on the ward; they will be admitted because they just
could not get into a service. Perhaps this is an opportunity to
think about the access of this group of children who, ultimately,
will represent an allergic burden for many more years, because
they do need specialist care. It is not just about whipping out
a few foods and doing-it-yourself at home.
Q661 Lord May of Oxford: We have
actually covered much of the ground of the question I was going
to ask, which would have been: against the background of a lack
of understanding of what is actually happening and causing the
rise, what, if any, consistent advice is or should be offered
to pregnant women and mothers of young children regarding allergy
prevention? Is there any consistent advice that is recommended
that be given? If so, what do you think of it and do you think
it is well-founded?
Dr Rosenthal: The Cochrane database on this
aspect of prevention or food avoidance in pregnancy or lactation
has been revised more often than any other Cochrane database,
and the conclusion remains entirely the same; that there is no
evidence—definitely no evidence—in terms of food avoidance
during pregnancy, and during lactation possibly. Therefore, is
it scientifically well-founded? It is scientifically well-founded
only to the extent that nobody still has any idea.
Professor Hourihane: Could I read out what the
current European Academy of Allergy and Clinical Immunology guidelines
for this are? "The dietary recommendations based on present
knowledge: all infants, no special diet during pregnancy or for
the lactating mother; exclusive breastfeeding preferably for six
months, on the basis of WHO advice, but at least four months.
If supplement is needed conventional cows' milk formula is recommended."
So there are no particular dietary restrictions for the general
population. "Avoidance of solid foods preferably until six
months but at least four months." Further recommendations
for infants who are at high risk of allergic disease (so they
would have a father, mother or sibling with allergies) are that
if supplement is needed extensively hydrolysed formula is recommended
until four months, and after the age of four months high-risk
children can be nourished like non-high-risk children. The important
point is there is no particular advice for pregnant mothers.
Professor Harper: This is a really important
question that one is always asked. I see a child with eczema and
allergy and the mother is wanting further children saying: "What
can I do? What should I do?" The policy we adopt is that
just described by Professor Hourihane. As I said before, these
children are seen by such a variety of different specialists—it
could be gastroenterology, it could be general practice, it could
be a paediatrician, dermatologist or allergist, and so on—and
advice does vary. It seems to me that particularly among gastroenterologists
there are doctors who maintain that mothers should be on a diet,
but there is very little evidence to support this approach. If
you look at published papers there are some papers that say it
is good and there are some papers that say it is not helpful.
At the moment, there is no evidence that mothers should go on
a diet at all.
Q662 Lord May of Oxford: In the first
instance, that people are more likely to see their GP than a specialist,
who may well have particular views of a good or, alternatively,
peculiar kind, to what extent do you think GPs are well-informed
about this?
Professor Harper: I think this is crucial to
everything here: and that is better education at primary level.
You cannot send every child with a potential allergy to a specialist—that
is just not on—but what you can do is give better education
all the way through the medical system from whence they first
go to a doctor.
Professor Hourihane: Only 4 per cent of primary
care doctors who answered a survey by the British Society of Allergy
and Clinical Immunology reported that they had had any specific
postgraduate education about allergies. It is a blank page, I
am afraid.
Q663 Lord May of Oxford: I guess
what I am asking is, are they familiar with the guidelines?
Dr Hyer: No.
Q664 Lord May of Oxford: Do you not
think they should be?
Professor Hourihane: Clearly.
Q665 Lord May of Oxford: That is
not postgraduate education, that is just basic practice.
Professor Hourihane: I would declare an interest:
my wife is a GP and if you went into any GP's surgery the list
of guidelines on their desk is taller than their computer. It
is an impossible position to be put in. We need to be able to
deliver targeted specific advice or accessibility in a way that
is accessible for them, at a time when they need it as opposed
to when they are meant to be doing their reading. They need to
have it immediately available in some way that they can—I
do not know—Google it, for another word, on their desk,
or Prodigy, or the other systems that GPs have for information:
"what do I need to do with a child with eczema?"
Dr Hyer: We are all vaguely missing the point.
A very significant proportion of these parents will not be seeking
advice from the medical profession, and they may be seeking advice
from complementary care which may not be following these guidelines.
The paediatric gastroenterologist will follow those recommendations.
These are well-established recommendations that have also come
out of working parties that have worked with the World Allergy
Organisation. It is good, solid advice but it is not current advice
if you are one of the 25 or 30 per cent of mothers who will take
their small child with eczema to a homeopath, a complementary
physician of some kind, who will, not uncommonly, over-restrict
a child's diet. We should not kid ourselves; actually, primary
care is only one route that you access advice on what to do with
your child's incurable skin condition. There are a not insignificant
number of children in my care who have significant failure to
thrive or social impairment because of restrictions imposed by
non-medical resources.
Q666 Lord May of Oxford: This opens
the door to a much larger question, which is the extent to which
non-evidence-based medicine should be being purveyed within the
NHS.
Dr Rosenthal: We would all have to go home now!
Q667 Lord Soulsby of Swaffham Prior:
We have been talking about breastfeeding. Is there any transfer
of either sensitivity or tolerance actively or via lymphoid cells
in colostrum, for example?
Professor Hourihane: It is certainly true that
any allergen that a mother ingests—whether it is a food
allergen or anything else—will be found in breast milk shortly
afterwards. You can find peanut allergen in breast milk within
20 minutes of a mother eating it, and the variability of that
goes from within 20 minutes to up to eight hours later. So it
is not often the case that you can say if it is not there in the
first hour it will not have happened. 0.5 per cent of breastfed
infants have cows' milk allergy even though they have not been
exposed to cows' milk and that is due to intact milk allergens
expressed in breast milk. We are talking about the tail end of
a curve here because all children are exposed to those allergens
that a mother expresses but we are talking about the vulnerable,
high-risk child who then develops symptoms on the basis of that.
Q668 Earl of Selbourne: I want to
come back to Lord May's question about the help that GPs might
get from this Committee in its report and the structure. We come
back, time and time again, to the cases, as you have already reminded
us, where it is impractical to suggest that children, in the main,
can see a specialist; it will be the GP who is expected to be
able to deliver advice and diagnosis. We have also been told,
time and time again, that there is very little postgraduate training,
and absolutely nothing at undergraduate level—we have been
told this is 20 minutes, or so. What I would really like to hear
from you is what precisely you would like us to say which needs
to be put into the hands of a GP which would allow him or her
to be more effective in the diagnosis and treatment of allergies
in children.
Professor Harper: In simple terms they need
to have formalised basic training in allergy and to make sure
that there is good communication with their local allergy specialist,
and all the other specialists that relate to this group of disorders.
There should be protocols of management and that guidelines are
agreed nationally. In the past, allergy, at all levels, has not
been taken seriously enough. There is now a lot of background
science to allergy and a lot of formulated ways of managing these
children. I think that GPs should have CPD training specifically
for allergy, if they have not already had it.
Dr Hyer: This has been looked at by the Royal
College of Physicians. They produced a report, which I am sure
you are aware of, about three years ago. There is an issue that
it is not taken seriously by general practice and one of the big
pitfalls as a child with eczema is that the GP may say: "Look,
it is just not related to food" and they carry a 50 per cent
chance of being wrong, because we know the relationship between
food and eczema, potentially. This then produces a further barrier
between the patient and the GP. There needs to be a realisation
that it has to be taken seriously; these are real diseases, they
are not made up by homeopaths; they are real disorders. GPs, therefore,
need to have a resource that they can access for advice. That
means there needs to be specialist allergy services which are
recognised nationally, and not just a few units stuck in the south-east
of England with nothing west of Bristol. Access to colleagues
is a way round your suggestion, number one, and a realisation
that allergy does have a role, not in all, but in some children
with complex profound atopic disease.
Q669 Lord Rea: As a former General
Practitioner I would like to put the view that most postgraduate
education and keeping up-to-date received by GPs comes from exchanges
with the specialists to whom they refer their patients. Certainly
it was the case with mine; a good relationship with a local consultant
and good letters back from the consultant, with non-patronising,
postgraduate education included in the text, is a very good way
of doing it. However, the problem is that there just are not enough
allergy specialists for GPs to refer their many patients that
they might like to.
Professor Hourihane: We will need to grow some
allergists to populate the regions where there are not any, and
we cannot do that until we have proper centres of research and
training for allergy itself. The NHS responds very well to standards
and the Australia College of Allergy (I forget its particular
acronym) has developed standards for management of anaphylaxis
in the community which are very accessible. Off the top of my
head, one of them is that no person should have more than one
episode of untreated anaphylaxis during their lifetime. That is
quite a simple thing; it should happen once and then you should
have enough training and support so that it never happens again.
All children who have had anaphylaxis should be seen within one
month. Those are accessible, understandable, achievable targets
if we put the resources where they should be.
Chairman: I think that takes us very neatly
on to Lady Platt's question.
Q670 Baroness Platt of Writtle: What
are the priorities for research with regard to the primary prevention
of childhood allergy, and who is carrying it out in this field
at present?
Professor Harper: Perhaps I could start. There
is minimal research in eczema. It is an area that I have a particular
interest in. We have a research team at Great Ormond Street, but
there are very few other places that are doing proper basic science
skin biology research on eczema and why this condition makes children
susceptible to allergy. We need to know more about the basic biology
of what is happening to children who get inflamed skin with eczema,
and why—address the question—are they more susceptible
to allergy, because a lot of the allergy is actually through the
skin. I just want to make one point because I know all these facts
are being recorded, and it is wrong of me to disagree with my
colleagues, but it does highlight the lack of research and the
lack of good knowledge. Food allergy is important but there is
a wide spectrum of allergy, not just foods, but inhalant allergens
and environmental allergens. Food allergy is not 50 per cent of
children with severe eczema; it is probably more like 10 per cent.
Nevertheless, it is an appreciable number that must not be overlooked.
If we understood more about why children with eczema get allergy,
maybe we can address that, but there is a lot of research that
is needed focused on atopic dermatitis.
Q671 Chairman: We, particularly,
too, want to look at primary prevention rather than research into
established disease. You are talking about prevention in children
with eczema. I wonder if others of you have comments on that.
Professor Hourihane: In high-risk groups, defined
as having a sibling or a parent with allergies, intervention,
such as the delayed introduction of solids, appears to be effective.
On a population basis it is very difficult to see if that advice
will be effective because intensive investigations in isolated
populations are not effective, so bombing their bedrooms and making
their rooms hypoallergenic and very austere do not work for house
dust-mite sensitisation—removal of pets, etc. On a population
basis it is very hard to know what is the primary thing we need
to know, but interventions regarding early or delayed weaning
and selective weaning with low-risk allergenic foods is probably
more of a plausible way in the first year of life with primary
prevention. On the role of breastfeeding, I think, we need to
maintain the excellent breastfeeding rates in this country and
try to get them up to the levels they have in Scandinavia, where
they have support groups for women who cannot breastfeed, whereas
in Cork we have support groups for women who try to breastfeed.
So we need to switch this round to make this a breastfeeding culture.
Dr Rosenthal: The question I always ask myself
is why do most people not have allergy? How do they learn immunologically
to tolerate antigens and foreign proteins that are presented to
them? What distinguishes 98 per cent of the population from 2
per cent of the population, because until you know why that happens
you cannot prevent it in the 2 per cent of the population. On
the studies from Israel, as Dr Hyer has said, why does everybody
in Israel stuff peanuts down their throats, from birth virtually,
and never have a problem, and yet we in the UK have a comparatively
large problem? Bear in mind that the eating of peanuts has become
much more common in the last 40 or 50 years with a rise in allergen,
but in Israel it seems to have no effect. So until that sort of
thing can be disentangled then primary prevention is not actually
possible because avoidance does not seem to work. Saturation in
certain cultures appears to work and why is it different? That
is where the research should focus.
Dr Hyer: In answer to "Where should it
be done", it should be done in established departments of
allergy in university departments who can manage sensible, prospective
studies, and it should not be done by small, little observational
studies done in little parts of the country. There needs to be
a clear idea about how we are going to look at primary prevention
because we do not really know where to target, as you have already
heard. That probably should be left to university departments
or specific tertiary allergists to work with primary care and
work out which studies will answer where primary prevention works.
Q672 Earl of Selbourne: Could you
tell us how the typical treatments differ between adults and children
for conditions such as asthma, rhinitis, eczema and food allergies?
Dr Rosenthal: I do not think they do.
Professor Harper: There is not a lot of difference,
in terms of managing eczema, between a child and an adult, except
to respect the paediatric aspects; that in a child the surface
area of the skin has a higher proportion to weight than in an
adult and therefore absorption through the skin is relevant. We
are very aware that what we put on the skin might be absorbed
into the blood, but the principles of treatment are very similar,
both for children and adults, and most children can have their
eczema treated adequately with topical therapy.
Q673 Earl of Selbourne: Are there
some medicines which you have to be more careful with than you
would with adults, such as anti-allergic medicines, antihistamines
and corticosteroids?
Professor Hourihane: If they are used appropriately.
We use them down to very young ages, and Professor Harper would
do the same. Appropriately managed they are very useful. One of
the things I would like to get on record is the fact that we should
not be using first generation antihistamines in children just
because they are sedative to decrease their itch; we should be
treating the itch and then they will be able to sleep. We should
be using modern medications at appropriate doses with appropriate
frequencies, and that goes for corticosteroids, immunomodulatory
therapies, such as tacrolimus and pimecrolimus, as well as anti-asthma
medications.
Dr Hyer: I would argue that the treatment is
different in children for food allergy because it does not exist
in adults. I work in an adult hospital, which is a big gastrointestinal
service in North London called St Marks. They do not need any
food allergy services. So the treatment is different. You need
specific food allergy services for children which you will not
need in adults. Why is it necessary? Because you need a multidisciplinary
approach with dieticians; you do not have over-restricted diets;
you want reliable ways of investigating children and interpreting
the results correctly and not with prejudice, and that is a different
treatment package to that which you get from adult practice. This
requires dedicated services.
Q674 Earl of Selbourne: Can I ask
Dr Rosenthal: he has given us an interesting paper and near the
end of it he refers to the tremendous increase in prescriptions
for adrenalin-injection devices—EpiPen, and the like. You
hint that perhaps they are being over-prescribed. Is there a danger
in this? You ask the question (and you do not actually answer
it) that there might be an issue as to whether they are leading
to social difficulties and greater family anxiety. Would you like
to answer your own question on that?
Dr Rosenthal: The answer covers all the subjects
from defensive medicine through to clinical practice. There is
no doubt that over the last 10 to 15 years the prescription of
these devices has rocketed, although I actually say I do not know
how many I have prescribed but only one has ever actually been
used. Whether I am just lucky, I do not know. In quite a lot of
it there is a cost in the sense of social cost: Johnny goes to
party, but Johnny has to bring EpiPen, antihistamines and all
the rest of it. It may, of course, truly be necessary but it is
not a free lunch in that respect, and one has to be careful that
the management of the condition is not worse than the problem
and only equals the problem. There has been, though we still wait
with baited breath, no court case of which I am aware of the non-prescription
of such a device leading to not preventing some tragedy and being
sued as a result. So in terms of the criteria for when you should
prescribe them, there is very little laid down and everybody has
their views—they are much more rigorous in America than,
for example, here. As I put in the statistics, one in 80 children
in Canada carries an adrenalin device, which is extraordinary.
Professor Hourihane: I am afraid I do not find
it extraordinary at all when the prevalence of peanut allergy
is even higher than that. In almost every one of the consensus
documents about who should carry adrenalin, if you have peanut
allergy you should carry one. So, if we do the maths on this,
one in 55 children has peanut allergy but only (from Australia
in 2004) one in 500 children had an EpiPen. So to even increase
the number of EpiPens just to provide for the single condition
that is peanut allergy we would need to increase the number of
Epipens by a factor of more than six, just to cover the single
allergy that peanut represents. I want Johnny to go to the lunch
rather than not go to the lunch. If he has to bring a bag of equipment
that he does not need to use that is a different matter; that
can be left outside. We want these children socialising normally
with the extra caution that comes with an appropriate adrenaline
kit. We do not want them to ever have to use it but we want them
to have it available if they ever have to use it.
Dr Hyer: You have heard two differing opinions.
As a practising paediatrician this is a real challenge. I could
give an adrenalin pen to every child who comes in with a food
allergy that might pose a life-threatening episode. It is not
just peanuts; it is tree-nuts, and it is potentially milk in smaller
children. Every day I get three or four `phone calls from a parent
and it is perhaps one of the commonest questions that is raised.
There are guidelines out there; there are Australian guidelines,
there are American guidelines, but actually what to do in this
country is still not clear. It is a real shame for this honourable
Committee not to have clear guidance from the four of us, because
we do not know yet exactly who should carry them. This therefore
becomes an individual decision with a patient which cannot be
made, probably, in primary care safely. These patients deserve
to sit down and have a sensible diagnostic process taking place
where they find out which nuts they can and cannot have, see a
dietician, have an emergency protocol and then, if they still
feel it is necessary, receive the adrenalin pens. This was a practice
that was put into place by the McEwan group and other colleagues
who have looked at packages of care. That cannot happen in general
practice. So, in answer to your question, we need to have a relationship
with our GPs, so that if they `phone us and say: "I do not
know whether this mother needs an adrenalin pen", this is
a decision that may last for five or 10 years, or a lifetime.
Surely, these patients deserve a consultation with either someone
like Mark or myself or anyone who has the specific interest and
skills to make that decision with a parent. My plea to you is
that it is not just leaving it for general practice to do. This
is a question that was raised before. If you have a child you
are weaning and you are breastfeeding, with severe eczema, even
if general practice can manage it, perhaps it is wrong to expect
them to do so. We have the expertise, we can help at least on
one consultation and share that burden with the GP. The same argument
happens with adrenalin pens. There are differing opinions; there
is no fixed protocol a GP can follow; the practice must change
from one patient to another. It is unfair to leave that specifically
unsupported in general practice to do, and we should seek the
people who have an expertise, whether it be a respiratory doctor
or an allergist, to work out who should have those pens before
the whole population walks round with them.
Q675 Lord May of Oxford: Is the procedure
that you recommend that which is followed in Australia or not?
Dr Hyer: I have just come back from a sabbatical
working in the allergy services at Melbourne Children's Hospital,
which is probably one of the best established services around
the world. There is not absolute clear consensus. There is rapid
offering of adrenalin pens because they meet the criteria of distance
and inability to access hospitals as they may, for example, in
Ireland, but they certainly would not if they were living within
Chelsea. These are very individual decisions, but the primary
care is not the same in Australia as it is in this country. Access
to hospital specialists is not the same, and the need for adrenalin
pens is different for whether you live in a suburb round the corner
to the Royal Children's Hospital in Melbourne or whether you live
in Wogga-wogga in the outback. These people make individual decisions
and we must make individual patient decisions in this country,
based not in primary care, about who should be carrying adrenalin
pens.
Q676 Lord Soulsby of Swaffham Prior:
Can we turn to immunotherapy? Is immunotherapy widely practised
in this country? Is it as effective in children as in adults?
A rider to that is, is there danger in using immunotherapy in
children?
Dr Rosenthal: Immunotherapy was used but fell
out of favour in the 1980s, and Steve Durham did some very wonderful
pioneering work in adults in tree and grass pollen desensitisation
in adults, showing an immunomodulatory benefit which was continued
after stopping the therapy. It certainly does work in children
and is used, though of course the entry criteria that you must
not have asthma precludes quite a lot of them. Also, it is quite
an onerous injection regime, so getting a younger child to have
it is very unlikely. People, therefore, have to be positively
begging me before we undertake it. I am, personally, still very
chary about it because most of the time non-immunotherapy treatments
for this sort of thing are effective, and it is only the hardcore
minority which you need to progress to that stage.
Q677 Chairman: Our Sub-Committee
visited Germany and there we saw immunotherapy being used to a
much greater extent than in this country, with a much lower instance
of risk than the old experience from this country, which was out
in primary care, which is where the problems were arising when
patients were given these injections in primary care, a long way
away from any kind of resuscitative centres. I wonder if you have
any comment on that discrepancy between the German therapeutic
practice, where they are reporting quite a major benefit?
Dr Rosenthal: In relation to my customers, so
to speak, I have to wait a long time before somebody comes up
who qualifies, at least in my view, but maybe I am being too austere
about this. If I was going to be cynical about the American viewpoint,
it is a very lucrative pastime.
Professor Hourihane: I do not think that pertains
in the UK because of the structure of the health service. The
NHS is the laughing stock of Europe for its absence of immunotherapy
for allergic diseases—briefly. The regulators are stuck
in a 1986 mindset and need to get over that, and move with the
science. Professor Kay's group and others have driven this to
areas which show that it is safe, effective and its impact is
comparable to simpler medication, which is much more expensive.
The issue for children, my Lord, is: is there some way that immunotherapy
can prevent (the favourite term) "the march" or not?
It appears that mono-sensitised children who are allergic to just
one allergen, if they are treated with immunotherapy for that
allergen, do not have the promotion or diversification into other
allergies. So it appears that children may be the key group in
which we should be doing this.
Q678 Lord Soulsby of Swaffham Prior:
It is an interesting comment that progress stopped in 1986. Maybe
we should take that on board. At what age could you start immunotherapy
in childhood?
Professor Hourihane: It is a very daunting prospect
to give children injections once a month for a disease that they
do not know anything about and you are trying to prevent a condition.
Oral immunotherapy maybe the way forward for this, and I think
everyone would understand that nearly everybody, including food-allergic
individuals, are tolerant of nearly everything that they eat.
So it is the tolero-genic route, and it may be that we should
be exploring that on a population base for sensitised children
who, down to the age of one or two, will be able to do that, although
it has not really taken off for children less than five yet.
Q679 Chairman: Do you have any comments
from the food allergy point of view?
Dr Hyer: From a food allergy perspective and
from a practising clinician, I am frustrated that I do not have
the access to immunotherapy that I would like to try and see if
I can reduce the burden of atopic disease, although nor am I also
convinced yet about its therapeutic benefit. That needs to be
taken on and introduced to see whether it works within this country.
There is one wonderful immunotherapeutic agent which is under-utilised
in this country, which is called breastfeeding. The Select Committee
also need to remember that if postnatal care was improved in this
country and the prevalence of breastfeeding rose we would already
have our own biological immunotherapy, at least for some foods,
that may offer significant benefit. I do not know if that is a
fair comment.
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