Examination of Witnesses (Questions 20
- 39)
THURSDAY 17 JUNE 2004
MS MURIEL
SIMMONS, MR
DAVID READING
AND DR
SHUAIB NASSER
Q20 Chairman: What help, Mr Reading,
can you give to some of your people? Presumably it is the same
kind of line, where a person comes on to you where they feel they
have not been properly helped by their GP or wherever.
Mr Reading: Yes.
Q21 Chairman: What could you do to
help?
Mr Reading: As you know, we are
at the extreme end of the spectrum. Anaphylaxis is becoming much
more common and people have a whole range of problems and difficulties
and questions. They will often come to our helpline; for example,
the mother of a child with a peanut allergy—which puts a
tremendous burden on the family. The child may have been rushed
to A&E, and once the dust has settled they go to the GP, and
frequently the answer from the GP will be, "Well, if the
child is allergic to peanuts, don't give them to him," and
so they come to us. They come to us with questions like, "How
do we avoid peanuts?" We go into the supermarket and we see
all these warning labels, "May contain nuts". What does
that mean? They want to know can they take their child safely
to a restaurant without the child ending up in casualty that night.
They want to know how to assess whether symptoms are mild, moderate
or severe. They want to know how to treat those symptoms. Sometimes
they have been prescribed an adrenalin injection pens but they
have not been shown how to use them, so they say to us, "How
many should I carry and when should I use it?" We say, "You
must talk to your own practitioner."
Q22 Chairman: Who would provide those
pens? Would that be from the GP or the hospital?
Mr Reading: That would be prescribed
commonly by a GP. I am sure it can be prescribed by the allergist
as well, but if it is prescribed by a GP you can bet there is
no instruction on how to use it, either there or at the pharmacy.
Q23 John Austin: On that point—and
it bears on something which David Amess said earlier about what
happens in schools, where there are cupboards full of nebulizers—presumably
a child who has a severe anaphylactic reaction to peanuts or sesame
oil or whatever will be carrying a pen on them.
Mr Reading: You would hope so,
but not all the time.
Q24 John Austin: Hopefully. At school,
who administers that and are there difficulties? When we did our
children's health inquiry there were all sorts of resistances
from some of the teachers to becoming involved in the healthcare
area.
Mr Reading: I think over time
those resistances are disappearing. First of all, you need the
teachers to volunteer—we would not dragoon them into doing
it, so you need them to volunteer—but you do need somebody,
preferably . . . well, essentially, a medical person, to go into
the school to seek out the volunteers and to train them in the
use of the injection. I know in good areas like Southampton and
parts of London and Cambridge you will get excellent systems set
up where people train to go in and train the staff, but this is
patchy. Around other parts of the country teachers will understandably
be very frightened at being asked to inject an adrenalin pen.
They may be willing to do it because they know that the child's
safety and wellbeing is at stake, but they have a lot of unanswered
questions.
Q25 Mr Amess: Chairman, just coming
in on that anecdotally, I had a school where a little lad had
an allergy and the school was not prepared to take the responsibility
initially. It went on for a long while until eventually it was
sorted out. It was very, very complicated but eventually somebody
was prepared to administer assistance.
Mr Reading: I think the essence
is good communication. We come here to talk about the health service,
but the parents too must play their part. There must be good communication
from the start. We find quite often that a parent maybe has not
received all the information that he or she might have done, is
uninformed, goes into the school with a fairly scary storey, has
got it all out of proportion, and will go in and frighten the
staff. That is the sort of situation where the press are involved
and it turns very nasty, and you can understand why school staff
are very upset and confused.
Q26 Jim Dowd: You mentioned nut allergies
in particular and I often think we should put a sign on this building
saying. "Contains nuts"! Given that this can be such
a potentially catastrophic condition, perhaps I have not followed
these things but just as a layperson, an ordinary citizen, this
appears to have appeared out of almost a completely blue sky.
A little more than a decade ago, certainly two decades ago, we
just never heard of this.
Mr Reading: Sure.
Q27 Jim Dowd: Is it a recognition
of something that did previously exist or is it an artificial
creation of societal changes and change in diet, etcetera, etcetera?
Mr Reading: I am sure Shuaib could
add some depth to my answer, but I would say that we were set
up early in 1994 as a result of four people dying from nut allergy,
including my own daughter. At that time, it was pretty much unheard
of: late '93/early '94. It has indeed been as a result of 10 years
of our campaigning and Muriel's campaigning, but also admittedly
a lot of good work initially in Nicholas Soames's department at
what was then the Ministry of Agriculture, to raise the profile
of this. People would then say, "Was it always there and
is it just now being identified?" We think there are two
things here:Yes, we think it has been around for some time and
cases in the last ten years are being identified because of the
new awareness, but I am sure there is a very real increase as
well over the last ten years. I am sure Shuaib has something to
say about that.
Dr Nasser: There are now some
very good studies which essentially identify that this is a growing
problem. A cohort of children who were born in the Isle of Wight
has been studied. Every few years, they test every single child
born in the Isle of Wight. The numbers have doubled over the last
five or six years, so we know that this is a growing problem,
and now one in 70 of that cohort is known to be sensitive on skin
testing to peanuts, for example. One in 70 children is the estimate
for the number of children who are allergic to nuts. The number
of children sensitive to nuts in, say, the United States is 7
or 8%, so if we follow them in terms of everything else that seems
to be happening, we can expect that sort of number in maybe 10
or 15 years' time. The number of children allergic to nuts in
developing countries is far fewer—far fewer—so it
seems to reflect the growing increase in allergy in general. You
do not just get one allergy, to nuts; you may get other allergies
if you have the ability to develop allergic disease and you then
develop multiple allergies. We know this is a growing problem
and we know many different types of allergy are increasing. This
is costing the health service a lot of money. For general practice
budgets, in terms of looking after allergic conditions, we are
talking £900 million per year. Six per cent of general practice
consultations are for allergic disease, so this is an expensive
problem. If we want to fund this properly, we can probably improve
the efficiency of the way that this is managed, and it probably
will not cost very much money, I would have thought.
Q28 Chairman: Coming back to Mr Reading's
and Mrs Simmons' point, and the situation of managing children's
problems in the school environment, do you have any views on the
ability of the school health service to deal with the kind of
problems David was describing? Are they involved at all in any
way?
Mr Reading: Yes, we are involved.
Q29 Chairman: No, is the school nursing
service involved with this kind of problem?
Mr Reading: Yes. Often you will
find that in a part of the country where allergy services are
very good, there is much more involvement, and very high quality
involvement regarding the school nursing service. But of course
they can only go on what they know, so often even the school nurses
themselves will come to organisations like ours saying, "Look,
we do not know enough about his, can you help us?"
Q30 Chairman: It is very variable.
Mr Reading: Very variable, but
patchy.
Q31 Chairman: If there is on our
map a centre near to a school, there is more of a likelihood of
them being aware in that school environment of some of the issues
that they need to deal with.
Mr Reading: Absolutely.
Q32 Dr Taylor: We have had some very
useful written information from all of you. The figure of one
in 70 has hit us from the evidence as well because that really
does bring it home to us how common it is. I think Mr Reading
said this figure arises from a tripling in the last decade. I
want just to refer to Mrs Simmons' recommendations from Allergy
UK because I think they are very realistic, in that the first
four are pointing out that in general practice, with more training,
a vast amount more could be done. I really wanted to ask Dr Nasser
about his survey and see if he can give us guidelines of the sort
of people who could be treated by well-trained GPs and the sort
of people who would still need the specialist allergy services.
Does that come out from your survey?
Dr Nasser: I think the important
thing here is that we have to say, "Who is going to train
the GPs?" first. You do need a hospital base. In every region
there has to be a hospital base in order to provide the training
for general practitioners. That is the first point. The second
is that we certainly know that the vast majority of allergic conditions
can be treated in primary care and it is probably only about one
in six who would need to go to see a hospital specialist. Five
out of six can almost certainly be treated in primary care.
Q33 Dr Taylor: The one in six that
you are talking about, these are the people with real anaphylaxis,
and what others?
Dr Nasser: Patients at the most
severe end of the spectrum. We are talking about patients with
severe hay fever who would require desensitisation, for example.
Patients with asthma, allergic asthma, which is difficult to control
in primary care and may be associated with other allergic conditions.
Patients with a drug allergy; for example, patients who are allergic
to antibiotics that they absolutely need, need to be investigated
for this, or patients who are allergic to general anaesthetics
who have to be investigated. Those are the sorts of patients,
patients with multi-system disease. There are quite a lot of people
out there who need to be seen in secondary care, but it is important
to recognise that primary care needs the support structure in
place before we should expect primary care to look after all these
patients.
Q34 Dr Taylor: Training in primary
care cannot be done until there are enough specialist units to
cover the whole country.
Dr Nasser: In order to train them.
Q35 Dr Taylor: I see that. The combination
of food allergy and asthma, is that widely recognised now or is
that something that is not recognised.
Dr Nasser: We know that if you
have asthma, then you are more likely to die as a result of an
allergic reaction to food. These are the patients who are at greatest
risk. This is not well recognised and it is a message certainly
that the Anaphylaxis Campaign, I am sure, has campaigned for.
This is a very important message.
Q36 Dr Taylor: In your survey you
talked about desensitisation. I have been retired quite a long
time and desensitisation in my day was not always terribly effective.
Is it now? Can you almost guarantee for somebody like this airline
pilot that you can cure him?
Dr Nasser: The patients that we
desensitise for hay fever, on average would say that they have
at least an 80 to 90% improvement in their symptoms. I have not
come across anyone who has not said that.
Q37 Dr Taylor: Are you still having
to patch test them and get the wide range of things to which they
are allergic and then get the specific desensitisation agents
made up?
Dr Nasser: You do not get them
made up, you now buy them commercially and they are standardised.
That is part of the reason for the improvement in the efficacy
of the treatment. There are now standardised allergens to desensitise
patients. You have to choose the ones you are going to desensitise
and you have to pick them very carefully in order to predict who
is going to improve and who is not going to improve. For hay fever
this is a very effective treatment. You certainly have to skin
test them first and find out what they are allergic to and desensitise
them appropriately.
Q38 Dr Taylor: You can pick one off
the shelf to match roughly their allergies.
Dr Nasser: In fact there are only
a few standardised allergens available and very few licensed in
fact. Certainly with grass pollen you can desensitise patients,
but again this is on a named patient basis and this is not a licensed
treatment.
Q39 Dr Taylor: Are there any other
lessons from your survey?
Dr Nasser: Yes, drug allergy was
a real problem. There are two or three patients in that survey.
One patient almost died as a result of a very minor injury that
she had. She injured her thumb, needed a general anaesthetic and
almost died on the table with cardiac arrest. It was not until
one year later when she was referred to us that she was then identified
as having had an adverse reaction to one of the general anaesthetic
drugs. She spent a year trying to find out what had happened to
her and finally when she came to see us we identified one of the
general anaesthetic agents to which she was allergic and she now
says that she can live her life without worrying that this is
going to happen to her again. In another case, a lady with a very
severe type of asthma, who had been on steroid treatment, steroid
tablets, for 20 years, now has managed to come off her steroids
and leads a much more fulfilled life. She is 79 years of age.
There are lots of cases like this. I think the person who interviewed
these patients by telephone was taken by surprise as to the emotion
that these patients displayed. Many of the patients were tearful
and just happy to be able to talk to someone about this and they
all said that they welcomed this inquiry.
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