Examination of Witnesses (Questions 440-456)
MS MANDY
EAST, PROFESSOR
GIDEON LACK,
DR RICHARD
PUMPHREY AND
MRS HAZEL
GOWLAND
31 JANUARY 2007
Q440 Chairman: Going back to the
previous statement from Professor Lack, if someone has a mild,
generalised reaction to food, is that anaphylaxis? If it is not,
might that person go on to develop anaphylaxis on another occasion?
Dr Pumphrey: I can answer that from looking
at the fatal reactions. Over half the people who die from a food
allergy never had a severe reaction before. The only reaction
they had before was a mild reaction so clearly people can go on
from having a mild reaction to the next reaction being a fatal
one.
Professor Lack: Just to add to that, there are
certain risk factors for anaphylaxis. You can identify someone
at high risk for anaphylaxis but you can never confidently say
that someone is at low risk. I think that is an important distinction.
I can see a child who presents with a mild egg allergy—this
happens in clinic frequently—is given Piriton and told not
to worry, the problem is going to go away. You do not see the
child for a year and in the interim the child develops asthma
and some of these children may develop difficult asthma particularly
as egg allergy and food allergies put you at risk for other allergic
diseases. Once the child has asthma, particularly if the asthma
is poorly controlled and they encounter the food, then they have
a much more severe reaction. So seeing a child early on or even
an adult early on with mild symptoms does not reassure you, and
does not give you or the patient the confidence that the reactions
will be mild thereafter.
Mrs Gowland: Some of the work that I do for
the Anaphylaxis Campaign involves making contact with families
where somebody has died. Therefore I am able to work with Dr Pumphrey
with the family's consent, and this involves two things which
would otherwise be unavailable. I can find out what happened on
the day in great detail with my own experience of having suffered
allergic reactions and I can also find out a lot more about their
background and the whole atopic history of the person on a very
informal level (I am not medically qualified but I understand
their life). Therefore I can listen to mothers of young adults—it
is often a 20 year old person, maybe a 30 year old person—who
say that the doctor said it was a mild nut allergy when they were
two and they muddled along as I did through childhood, a bit wheezy
at parties, a bit sick but never having fatal or potentially fatal
symptoms until some other time of life. We seem to pick them up
in adolescence and anecdotally that is the high-risk age for life
generally. Lifestyle and life skills-wise you can understand why,
say, first year students are particularly vulnerable. They are
new adults, legally adult, away from home, choosing their own
foods with new friends. Those are circumstantial issues apparently
to do with allergy risk but too many of them have had minimal
symptoms in early childhood. In a class of three-year-olds you
would not be able to distinguish between two children with a nut
allergy, which of those children might be the one that might die
from it later.
Q441 Chairman: Dr Pumphrey, from
your database what is the age distribution of the deaths?
Dr Pumphrey: It varies from one food to another
curiously. Children dying from milk allergy the age range is from
five months to about 16; for peanuts it is from 13 to 26; for
tree nuts it is from 18 to 36 (with a few older people as well).
Then you have fish, crustaceans and so on where we do not have
large enough numbers to talk about a proper distribution; we cannot
do statistics because there are so few cases.
Q442 Baroness Platt of Writtle: My
question is to Hazel Gowland. Allergy Action offers advice and
training on food allergen risk assessment and management. What
type of businesses request material or training from you and how
does your work feed into the work of the Anaphylaxis Campaign?
Mrs Gowland: When I joined the Anaphylaxis Campaign
as a member I thought I would be a very ordinary member and there
would be thousands of people like me. I quickly understood that
there were a lot of people in my generation who, at the time,
had young children and they were frightened for their allergic
young children whereas I was an allergic adult who was confident—I
was a school teacher at the time—and so going into a room
full of people and telling them about life is where this work
started, and giving them confidence as well. That has developed
so that my work with the Anaphylaxis Campaign has led to talks,
presentations and increasingly structured formats for different
audiences. The key audiences now are various London boroughs who
bring me in to train food handlers generally and nursery staff,
people managing small children in particular, not just the people
feeding them but the people looking after them day by day because
obviously those little children, as Dr Lack has said, have a dynamic
allergic status and require some supervision in their environment.
Then there are the large, reputable catering organisations, the
kind of companies that will have in-house catering—also
banks, insurance companies, those sorts of people. I have worked
for the John Lewis Partnership. Sometimes schools, sometimes regional
branches of the professional bodies—the Trading Standards
Institute, the Chartered Institute of Environmental Health—will
call me to give a talk for them. Now this is increasingly structured
because of the work that I am doing delivering these workshops.
It started out as a half hour presentation on somebody else's
programme and we have now got a five-hour all-day package. I was
doing one of these FSA workshops yesterday in Lincoln with 20
trading standards and environmental health officers, funded by
the FSA, which has been one of the goals of the Anaphylaxis Campaign
for a long time. When I started calling for that six years ago
I did not realise it would be down to me to deliver it. I thought
that something would happen, there would be a magic training fairy
that would come and deliver this training, but it is me, so I
am doing it. Those are my various ways of working.
Q443 Baroness Platt of Writtle: You
cannot do all this on your own. You have talked about London boroughs,
you have talked about schools, you have talked about businesses,
but presumably there is a great need for people like you to be
doing it on a wider scale.
Mrs Gowland: That is my aim. It is fantastic
work, it is very rewarding and we can make changes; we can change
the way people work.
Q444 Baroness Platt of Writtle: Do
you have other people working for you in that field?
Mrs Gowland: The training yesterday was delivered
by the first person I have trained to deliver a workshop. I go
as an extra but it is a dovetailing process and gradually she
is taking more of the script off me. Her background is that she
was an environmental health officer so she has all the credentials
of the local authority enforcement officer and she now works in
the private sector so she is visiting and auditing every size
and shape of business from huge factories down to little takeaways
on a daily basis. I have had to teach her allergy and she has
taught me about her food safety world by return. I think if anybody
could do cloning that would be useful.
Q445 Lord Taverne: There are two
of you now but by the sound of it you need hundreds.
Mrs Gowland: We do, yes. We do what we can.
The Anaphylaxis Campaign has a special website which is called
cateringforallergy.org which we wrote—I put a lot of content
into it—which is another place where there is credible information.
I will train anybody to deliver if they want to go and train.
The NVQ question you asked earlier, it was 1995 when I went to
the training bodies for the syllabus for the training of food
handlers. I have been trying to get it on their radar but, as
Dr Leitch suggested, getting new subjects on a fairly packed curriculum
is not always easy. The other thing that was mentioned earlier
which I will say is that on my Allergy Action website there are
translations for people to go on holiday and they can help themselves.
I have translations in certain languages—as many as I have
been able to get—so people can talk to chefs when they go
on holiday, they take a little card with them. There is a lot
more work to be done.
Q446 Lord Colwyn: The Department
for Education and Skills have a recommended list of healthy foods
which of course includes nuts and seeds and no doubt kiwi fruit.
Do you feel that children with food anaphylaxis or a tendency
to that are sufficiently protected in their school?
Ms East: The Anaphylaxis Campaign have done
a lot of work on this and we do not advocate nut bans in school;
we have never been of the opinion that you should ban all nuts
and all major allergens in schools. We believe more that management
and for the child to learn to avoid is much better in equipping
the child for later life. However, with the Department for Education
and Skills suggesting that nuts and seeds are deliberately brought
into schools we have had to take a stand. At present a vast majority
of primary schools and certainly pre-schools do not have nuts
in school deliberately and a lot of them actually ask parents
not to send nut products and in some cases milk and egg products
in with children's snacks or packed lunches. With the primary
schools this will probably be managed within schools because there
is a great knowledge amongst head teachers that they need to be
keeping their allergic children safe. However, our concerns are
secondary schools where the children are much more independent,
have control of their own money and a lot of these snack products
will be provided through vending machines so there will not even
be any human contact when people are buying the products. When
you are looking particularly at nuts—peanuts and tree nuts—you
have to remember that the allergen is the protein within the nuts
and it is extremely transferable so if somebody is eating nuts
it will be passed to somebody else through hand contact, through
hand to face contact and also through discarding of the wrappers.
Obviously, as we were saying before, the thresholds of what people
will react to are unknown but certainly a local reaction is extremely
likely if someone were to touch you after they had been eating
nuts. So although we are not saying that all these reactions could
prove fatal, we are saying that it will directly affect the quality
of life of the children attending the school. Anecdotally, since
this has come out and it has been well known that this is going
to happen, we have had very worried mothers and indeed worried
young people speak to us to the point where a number of children
are scared to go to school. Also this leads into the worry of
possible bullying. This does happen, particularly in secondary
schools, where if a child is different that difference will be
picked up. Children have had nuts put into their blazer pockets
and into their lunch boxes to try to contaminate their food. It
is very much an issue that we are working on and we are trying
to educate head teachers and teachers within the schools, but
also educate the peers and the young people themselves. As we
have already heard, from the ages of 11 or 12 upwards, up to when
you would leave school and take on life independently, you are
at an extremely vulnerable stage in your life. The answer to the
question is that we are not particularly happy about it but we
are working very carefully to make sure that if it happens it
happens in the safest way possible.
Q447 Lord Colwyn: Can anything more
be done to prevent this casual contact with these allergens? So
far as I am aware, even handling a banister which has nuts on
it from hands can trigger an anaphylactic shock? Or is that not
right? Is that very rare?
Dr Pumphrey: We have looked at the source of
allergen and severity of reaction, and in general, environmental
contamination leads to a relatively mild to moderate reaction,
not the most severe ones; it is very unusual to get such a severe
reaction. Contamination can happen but nearly all the fatal reactions
have happened from intentional ingredients.
Ms East: Can I just add to that that we do agree
with what Dr Pumphrey has just said. We are of the opinion that
the allergic population need to be more aware of the type of reactions
they are having. However, for someone who is not medically trained
and a young person who does not really know very much about their
allergy it is still extremely scary to have a local reaction because
they do not know and do not have the knowledge—because they
are not seeing allergy specialists to give them that knowledge—how
that reaction will turn out. There is then a level of panic. That
can lead to a different type of reaction like a panic attack or
some type of worry because they do not know what is going to happen
even though we know that medically it is very rare for you to
have anaphylaxis through local contact.
Q448 Lord Colwyn: I am feeling rather
humble in fact because my youngest daughter works for the advertising
agency that does Mars and Snickers. I am just wondering whether
the manufacturers of these sweets that contain nuts are doing
enough to prevent the problem?
Mrs Gowland: You heard from Sue Hattersley from
the Food Standards Agency this morning and if we are honest, in
the UK these things are better dealt with than they are across
the Channel and probably in America as well. The nature of the
relationships between the consumers and the manufacturers and
the retailers and those who influence controls and labelling is
excellent; we really do have very close relationships. There are
some insurmountable problems. One of them is that you do not wash
in a chocolate factory because water in a chocolate factory adds
a microbiological risk so if you want to clean a chocolate line
what you do is just push more fat down the line and it is supposed
to pick up the contaminants or whatever along the way, or you
push chocolate through the line. Anecdotally I have had a life
threatening episode when I was at a high risk age from a chocolate
that was not meant to contain nut but had picked up some contamination
probably because of rework. That is another thing that happens
in factories, you recycle something that was not used and you
put it back in. You can take the chocolate off the wonky ones
and put it back in the system and make new chocolates. There are
some things which are very difficult to manage. There are some
companies that have gone to great lengths and even made it their
main purpose to exclude particular allergens from their production,
but there are some very practical issues and if you think that
the aim of a manufacturer is to make things as cheap and simple
as possible, which essentially means having the most flexibility
between what you run down a line and keeping the line going night
and day so that you can get the best use out of your resources,
whereas the optimum for the allergic consumer is to have separation,
segregation, protection, limits (ie changes of uniform, controls
of air, lots of extra hand washing and so on). You can see that
there is a crunch there and it is always going to be a compromise.
Q449 Viscount Simon: In oral evidence
the Department for Education and Skills said that "all school
nurses are trained nurses and many are qualified children's nurses,
and this means that they will all have had some training and experience
in the management of anaphylaxis". How does the Anaphylaxis
Campaign respond to this assurance?
Ms East: Obviously the statement is not untrue,
however a lot of school nurses had their nurse training many years
ago—some up to 30 years ago—and a lot of them do not
have the training in anaphylaxis that is needed today. A lot has
changed in the management of anaphylaxis and the treatment of
allergies in general, certainly over the last 30 years. Even more
recently the way that the adrenaline auto-injector is given has
changed and a lot of nurses will not be aware of that change because
once they have had their training in order to qualify them there
is no obligation for them to be retrained or have any refresher.
Obviously we agree that school nurses are trained nurses, however
a lot of research is being done into schools and the school system
and whether the nurses and medical professionals in charge are
able to cope. In the Select Committee for Health report in 2004
a survey conducted in the Hull and Yorkshire area of the country
showed that 200 schools were surveyed and 82 per cent of those
schools had no policy for dealing with allergy and anaphylaxis
yet they had children within the schools who were actually living
with those conditions, and they were schools with school nurses
in so those school nurses were not confident enough to give the
adrenaline auto-injector if needed or manage local reactions.
The Anaphylaxis Campaign are now in the second stage of a UK-wide
project in order to train school nurses and the background for
doing that showed that there was a definite, genuine need to get
school nurses trained to a level where they can actually administer
medication as needed or just manage the reactions in children.
To date 99 nurses have been trained and of those trained 21 told
us that they had never had any form of training for allergy training
beforehand. I think that shows how we react to the statement that
we are not disputing that school nurses are trained nurses, however
they are not sufficiently trained in dealing with allergy and
anaphylaxis.
Q450 Lord Taverne: Could you give
us some assessment of what you think of the treatment within the
National Health Service of patients with food allergy and anaphylaxis
and the quality of the advice they are given about managing their
condition?
Dr Pumphrey: That is a difficult question. It
is difficult because I think the standard of care differs across
the country. There are different areas and different practices.
Partly it is due to different opinions about what the correct
management is. One could take a simple example, adrenaline pens.
There is a range of opinion across the country as to who it is
appropriate to give an adrenaline pen to. In some areas they will
be given to anyone with mild allergy. If you are managing someone
with asthma and peanut allergy they will automatically be given
an adrenaline pen. In other areas there is a great resistance
to this because it is thought that the evidence of these pens
being helpful is not that clear. There are some people for whom
adrenaline pens are less likely to be effective, for example people
who are overweight may not get benefit from them. There are a
lot of ifs and buts. I think the quality of care across the country
is patchy.
Professor Lack: I would have to agree that the
quality is patchy but overall if you look at numbers of specialists
in the country in adult allergy and paediatric allergy, we are
not only the poor man of Europe but to a certain extent the poor
man of the world because we do not have specialists and if you
do not have specialists it means you do not have people in secondary
care or in primary care who know much about allergies. There is
a general lack of knowledge about allergies right across the board.
Sweden has 96 paediatric allergists paid for by the health care
system; the UK has a handful, most of whom are on academic funding.
The numbers reflect similar under-staffing in adult allergy. I
am sure you have heard evidence on the prevalence of allergic
disease and it is no remarkable coincidence that the waiting lists
for allergy clinics have sky rocketed and are very difficult to
control, particularly within Government waiting-list targets at
the moment. The patients who manage to come to our clinic do so
via a very convoluted process. They often come after years of
having allergic disease without proper treatment. We see on a
daily basis children coming into our clinic who have asthma, bad
eczema, hay fever, multiple food allergies. Their asthma is not
properly controlled; they have not been diagnosed properly; they
have not been told specifically what foods to avoid; they keep
having reactions and this is not acceptable.
Ms East: Can I just add as well that from a
patient point of view the problem is not just there are not enough
specialists, there is a lack of knowledge in primary care so many
people will present to primary care with allergic disease and
quite often that allergic disease should be managed within primary
care, there is no need for a specialist appointment. However,
there is a fear with the parents or the allergic person that they
must have some specialist care. There is not the specialist to
refer to, the GP does not know how to manage it and so they are
often referred to the wrong specialist. So somebody who presents
with eczema might be referred to a dermatologist but they do not
actually get to the root of the problem. There is not the holistic
approach to allergy. The people we hear of are coming to us for
advice because they are not getting it from the National Health
Service.
Q451 Lord Taverne: In this depressing
picture are there any particular areas which are even worse than
others? The treatment of immunotherapy, diagnosis? Is there any
special weakness that one should be aware of?
Mrs Gowland: The most frustrating thing is that
allergy is cheap. I live with allergy; I am not using adrenaline
injector pens because I am very good at avoidance. If a person
is more sure of what they are allergic to and how they can avoid
it, then their life will improve. It is a whole life thing. If
they are in a woolly haze and hanging on a waiting list or desperately
trying to pay for some alternative allergy option for diagnosis,
then they will be in a muddle. The best way to live with allergy
is to be sure of as many things as possible: sure that you need
your medication, sure of the potential risks that you might react
in a world where everything is basically unpredictable. I believe
that within a practice or within an area, a GP might learn up
allergy and become the one that is better at it than the others,
that might be a way for people to be pointed in their direction.
The lifestyle stuff, the additional coping management work could
be done with the practice nurse. If somebody is going to train
you how to use your injector, to sit with you perhaps even with
a dietician and work through what you need to avoid and where
you might get caught out, then that might be a way to cover daily
management apart from going to the proper clinic to see an expert.
What happens at the minute of course is that first of all nobody
is looking at whole people, they look at it by organ. How many
parents of dead young people say, "I didn't know their asthma
was anything to do with it" whereas we know that if you keep
up your preventer medication you will be armed better to cope
with reactions than others who don't. That is simple and it is
frustrating that you cannot do that. These things are not expensive.
Even carrying injectors is not that expensive compared with operations
and interventions and so on; this is a relatively cheap thing
to get right if the right people are in the right place and are
accessible.
Dr Pumphrey: The great difficulty about being
a general practitioner is that you are just that and you have
to be able to cope with everything that comes to you. Over the
last few years we have made great use of specialist nurses in
the hospital practice and we were looking at the possibility of
having specialist nurses who would go and help the general practitioners
with their allergy patients. From the point of view of screening
out those who can be dealt with at a local level and those who
do actually need specialist referral I think that that kind of
system could be an economical way of approaching it.
Q452 Earl of Selborne: Is there a
risk that genetically modified food may introduce new allergies?
Professor Lack: I do not believe the risk of
genetically modified foods introducing new allergens is any greater
than the risk of introducing novel foods, naturally produced foods.
There is always a risk when you introduce a new food into a society
or into a culture that allergies to that food will develop. That
has been the case with sesame seed and kiwi for example. We did
not eat kiwi fruit 50 years ago and we did not have kiwi allergy
in this country. Intrinsically there is no increased risk by the
process of genetic modification of producing more allergenic type
foods.
Q453 Earl of Selborne: Conversely
is there any possibility of reducing allergens by use of GM food?
Professor Lack: No, you should not increase
the risk of producing allergens by GM foods. In theory a mistake
could occur where an allergen in an existing food—a protein
in an existing food—that causes allergies is transferred
into another food but that will not happen because we know what
these allergens are. Whenever a gene is transferred identification
of that gene is made. If it is a known allergen it does not take
place.
Q454 Lord Taverne: Is there any prospect
in the foreseeable future that work done, for example by Buchanan
and his colleagues in the United States, could produce some sort
of elimination of the allergenic properties of certain kinds of
food?
Professor Lack: One of the problems is that
most foods that cause allergies, it is multiple proteins within
the food. If you are going to genetically modify each protein
you will end up with an essentially different plant and that plant
will lose its properties that give it its taste and appearance
that make it a favourite food. However, what I would say is that
genetic modification at the level of individual proteins in a
food may give rise to a plant that is not particularly tasty but
to a product that can be used for medicinal purposes to try to
switch off allergies because that product becomes tolerated in
the allergic patient. It could be given in an injectable form
or in an oral form or together with some other medication to try
to desensitise the patient in a safe way. There are a few groups
working on that principle, the idea of making a hypoallergenic
peanut or some other food that you could then treat the patient
with to desensitise them.
Q455 Chairman: How is drug allergy
distinguished from other forms of adverse reactions to medicines?
Is there adequate data on the prevalence of drug allergy in the
UK and who records it? How are patients with drug allergy managed
in the NHS and are there adequate facilities for diagnosing and
managing drug allergies?
Dr Pumphrey: That is a very long and difficult
question. I attended a three-day conference in Liverpool on that
topic which barely scratched the surface. The long and short of
it is that there are many different types of allergic process
and drugs can trigger any of them. Some of them are IgE-mediated
like the ones we have been talking about, some of them are IgG-mediated,
some of them are cellular mechanisms and some of them work through
even more convoluted processes. We are very bad at recognising
which drug is causing which and something as simple as penicillin
will cause many different types of allergic response. Some of
them are dangerous, some of them are not and it is very difficult
to predict with any individual patient who has had, for example,
a rash from penicillin, whether their next dose will be tolerated
without any problems or will cause a major reaction. It is a difficult
area and in the Health Service we have very few clinics that can
cope with this and also there is a range of opinion within the
clinics about how useful the tests are that we use to investigate
these allergies.
Q456 Chairman: Is it being done better
in other parts of the world?
Dr Pumphrey: I do not think it can be done much
better, but I am sure the French would say that they do it better
because they have far more clinics and they have more people interested
in the subject and are prepared to look into patients very readily.
Professor Lack: I agree that the mechanisms
are complex; a lot more work needs to be done on that. One of
the problems is that the perception of drug allergy, particularly
penicillin allergy, is much higher than the reality. One of the
jobs of the allergist is to undiagnose drug allergies and in childhood
up to 10 per cent of children—or the families of these children—may
think they have a particular drug allergy to a common antibiotic
which means they never get that antibiotic and it makes clinical
practice very difficult. The tests are not perfect but a good
clinic should be able to sort out which child has allergies and
which does not and tell them which antibiotics are safe. We do
need more specialist clinics.
Chairman: In the light of your experience,
Dr Pumphrey, I wonder if you might like to write in after this
session a short piece perhaps summarising what you learned in
three days at Liverpool and also from your own personal life's
work experience because I think it will be very valuable to us
and we have not been able to do justice to that in this session.
May I thank you all for coming and for having informed our deliberations.
| 
