Examination of Witnesses (Questions 780-799)
Dr Glenis Scadding, Dr Clare Mills, Ms Donna Covey
and Ms Lindsey McManus
15 MARCH 2007
Q780 Chairman: Do your organisations
work with others such as the National Eczema Society and the Anaphylaxis
Campaign to support allergy patients?
Ms McManus: Yes.
Ms Covey: Yes, we do. We run holidays called
Kick Asthma holidays. We used to run something called PEAK holidays
which we ran jointly with the National Eczema Society because
so many children with asthma also have eczema. We make the Kick
Asthma holidays available to children with eczema and a lot of
the work we do on those holidays with the children is about them
getting used to their asthma and their allergies. We try to make
things like food allergies easier. Instead of it being awful when
they had to go in front of the whole class and say, "I cannot
eat this and I cannot eat that", at the start of the weekend
everyone does it. "Who does not eat shellfish? Who does not
eat peanuts?" It normalises it and an understanding of allergy
is a really important part of that work because with conditions
like asthma people do not always understand. It is not just about
the medical symptoms. It is about how asthma impacts on your daily
life and things like eating. If people go into a restaurant and
order they take it for granted. For people with asthma and other
allergic problems that is such a loaded thing all the time.
Q781 Chairman: What would you identify
as the largest gaps in the management of allergic diseases at
home, at school, at work and out in society?
Ms McManus: Initial diagnosis is the first stumbling
block. A lot of people self-diagnose and that is quite a worry.
We need advice there for these people when they need it right
from the very first step. We would like to see more education
at the primary care level, particularly for GPs and practice nurses,
right the way through to pharmacists.
Ms Covey: Firstly, it is diagnosis. In terms
of the baseline diagnosis, it still takes the average person seven
trips to a doctor before they get to a diagnosis of asthma. On
top of that, we are still very poor in the UK at diagnosing when
the asthma is allergic and when it is not. Our data shows that
only 30 per cent of people with asthma are referred for any sort
of allergy test by their GP. Most people do not even know whether
their asthma is allergic or non-allergic, which then means that
even starting a conversation about how you self-manage, how you
avoid the triggers, becomes almost impossible. There is secondly
the next level about what sets the condition off, what is likely
to be causing it. There is also an issue about people needing
much more information themselves, knowing what their asthma is
triggered by, how to understand when their asthma is being triggered
and self-management. We know that self-management plans, for example,
in asthma make a huge difference in terms of hospital admissions,
days off work and quality of life; yet fewer than one in five
people in the UK with asthma have a personal asthma action plan
even though the British Thoracic Society guidelines make it very
clear that this can really make a difference and recognise the
Asthma UK plan as a gold standard. It is about information and
understanding and also about people around you understanding,
things like perfume, for example. That can be a huge trigger to
people's asthma. One of the things that we do a lot of work on
in Asthma UK is just getting the real world to understand small
things like not having heavy perfume in buildings and thinking
twice before animals are wandering around all over the place.
Those can make a huge difference to people in terms of the management
of their asthma. The other issue with asthma is second hand smoke
which is one of the biggest triggers to people's asthma and we
welcome the role the Lords are playing in ensuring that we are
going to have a smoke free UK.
Chairman: Thank you so much for that last comment
in which I will bask.
Q782 Baroness Perry of Southwark: The
Charity Commission published a report last month. I think it was
called Stand and Deliver: the future for charities providing
public services. They highlighted that many charities were
not really being paid the full cost for the services they deliver
to patients. To what extent do allergy charities provide patient
care activities? What does that mean for patients and how does
it impact on the funding they receive?
Ms McManus: As a patient information charity,
we do not have an awful lot of outside activities for patients
but we provide a nationwide network of support contacts so that
people with allergies are not out there on their own. They can
be in contact other sufferers. Obviously it is not medical advice
but they can give support. We do become very much a listening
ear. Often our calls are quite lengthy in supporting these people.
If they have just been diagnosed, they are very frightened. If
a child has just been diagnosed with a peanut allergy, the mum
is absolutely terrified. She does not know what to do or where
to go so it is listening and giving them the time that is so important.
We do provide a lot of education. We are about to start an expert
patient course later this year which is going to be totally online
and it will be for the likes of parents, sufferers, playgroup
leaders and Scout leaders so that they can get a better understanding
of what allergy is. Most people do not understand the basics of
an allergic reaction. It takes away the fear and helps them manage
better. We also offer a bereavement counselling service for those
who have lost members of their families to allergy.
Q783 Baroness Perry of Southwark: My
question was about the funding.
Ms Covey: This is a huge issue for Asthma UK
because we provide a number of what are really NHS plus services.
They complement what the health service does in terms of individuals
but also working directly with the NHS. That includes our Adviceline
which is staffed entirely by nurses, all of whom have an asthma
qualification on top of their normal nursing qualifications. There
are our Kick Asthma holidays for children. There is our provision
of health promotion material, including things like self-management
plans which are something used jointly by the health care professional
and the person with asthma to manage their asthma. We also work
with local primary care trusts, particularly in areas with high
asthma morbidity in terms of funding pilot projects in different
areas to try and work out how we can move asthma care forward.
At the moment we do all of that from voluntary income, not government
funds. We do get caught in this Catch 22 situation. When we apply
for government funding for our Adviceline, we get turned down
on the grounds that it overlaps with NHS Direct. It does not.
NHS Direct nurses quite rightly often refer people with asthma
to our nurses who can have a detailed chat about their asthma.
Similarly, we have been turned down before with regard to our
health promotion materials on the grounds that asthma self-management
promotion is the job of the NHS and yet we know large parts of
the health service do that really badly and when they do it well
it is because they are using our materials. That is an outstanding
issue for organisations like us who have been doing stuff for
a long time so we do not qualify for new money that you get for
doing new and shiny stuff. We feel what we do complements what
the NHS does. For example, our nurses will spend up to an hour
on a call. A GP has seven minutes to talk to somebody and listen
to them when they have asthma. He has to diagnose and prescribe
at the same time whilst doing that. Whilst we are not in the trap
of people who provide services and do not get paid their full
costs, we are in a different trap where what we are doing is promoting
best practice and we are not being paid for it at all. We know
what we do transforms people's lives and in some cases can save
lives. We produce something called an asthma attack card which
people can carry with them. It tells somebody else what to do
when someone is having an asthma attack. About 80 per cent of
people with severe asthma cannot ask for help when they have an
asthma attack because they cannot speak. Every time we advertise
that using voluntary funds we get inundated with calls. Two years
ago when we first launched it we had to get a new phone system
at our national office. At Asthma UK we feel quite passionate
about the service we provide and the failure of government to
take up these issues.
Dr Mills: In terms of food allergies, the Anaphylaxis
Campaign worked very hard to train anaphylactics in the use of
adrenalin pens and that is crucial. A lot of their work is funded
from donations and corporate donations and I am not sure that
they have any other funding for that work.
Q784 Baroness Perry of Southwark: Staying
with the Department of Health system of contracting and funding,
will that put allergy charities in competition with each other,
do you think, or will it foster mergers? What will the effect
be on patients of all that?
Ms McManus: It could possibly foster mergers.
We all work hand in hand with each other anyway. We tend to keep
in touch so that we know what is going on, but at Allergy UK we
do not get any funding from outside apart from donations.
Ms Covey: In the allergy sector we do not have
that multiplicity of charities that you see in some other sectors.
For example, Asthma UK is the only national organisation that
solely does asthma, although others do a bit of asthma as part
of what they do. We do work closely together. We do not by and
large duplicate each other's work. If there were to be more government
money available for providing more advice, information and services
to people with the full range of allergic conditions, I am sure
that there is such a huge gap that we would all manage to work
together to work with the Department of Health and health care
providers to fill that gap. The real problem is at the moment
that nobody is trying to fill the gap except us and we are doing
it from voluntary income.
Q785 Baroness Perry of Southwark: Do
you think it would have an effect on patients if there were better
collaboration and more mergers perhaps?
Ms McManus: They are already getting a pretty
good service anyway. We give the best advice we possibly can.
We all spend an awful lot of time on the phone and we almost provide
a counselling service for these people.
Ms Covey: Unlike some areas of health care,
asthma, respiratory and allergy are areas where the charities
work really closely with health care professionals. I know that
is not always the case in some areas with the health care bodies.
Our area is a model of how we can work together in terms of how
the charities work together and have their own areas of expertise.
Also, we work very closely, for example, with people like the
British Thoracic Society, the GP in Airways Group. I know you
took evidence from Professor Tak Lee earlier on in these sessions
about the work he does, running the centre that we run jointly
with the Medical Research Council. I would hope that patients
do benefit but they would benefit by having more money to spend.
I think we get the best of both worlds at the moment because we
have a good level of specialisation. For us as an asthma charity,
not everyone's asthma is allergic so by being asthma specialists
we are able to handle the asthma specific issues and refer people
on. If we were to lose that we would lose a lot. For us, the "Tescoisation"
of the charity sector would not necessarily be a good thing.
Q786 Baroness Platt of Writtle: If
a person thinks they may have an allergy, who would you advise
them to consult in the first instance?
Ms McManus: It always has to be their GP. Unfortunately,
because of the lack of training for GPs, their allergy knowledge
is often quite limited. Often patients get referred on to the
wrong person so it might be a gastroenterologist or a respiratory
physician when they really need an allergist. Allergy is a multi-organ
disease. If you can get them to an allergist to start with, it
is quite important as they may have eczema or asthma or rhinitis
and an allergist can sort that out for them. However, it does
have to be a GP first and foremost because they have to refer
them.
Dr Scadding: I would like to criticise what
Andrew Dillon said. The statement that "most allergies are
competently managed in primary care by generalists" is absolutely
wrong. Some diseases which have an allergy component are dealt
with in primary care by generalists with pharmaceutical medications
like topical corticosteroids. The allergies underlying them are
not looked for and this is a very big mistake.
Q787 Chairman: Dr Mills, do you want
to comment?
Dr Mills: I agree with what has been said already.
Q788 Baroness Platt of Writtle: You
will probably say no, but are GPs adequately educated to deal
with allergic diseases and, if not—this is the key question—how
can this situation be rectified?
Dr Scadding: GPs are not adequately trained
to deal with allergic diseases. In medical schools the amount
of allergy training is absolutely minute, if it exists at all.
GPs are sent out into the world ignorant of allergy. The British
Society of Allergy and Clinical Immunology are trying very hard
to improve GP training by joining with an organisation called
the Primary Care Allergy Network. We are trying to give guidelines
to GPs. We are making very detailed, evidence based guidelines
and producing a primary version. We are trying to organise how
a GP in an eight minute consultation could sort out whether a
problem is likely to be allergic and, if so, where the best secondary
treatment should be sought. We are trying to do it on the basis
of our specialist society but it needs doing on a UK-wide basis
and it should be Department of Health funded.
Q789 Viscount Simon: I was wondering
what advice Allergy UK offers to patients or callers who claim
to suffer from multiple chemical sensitivity or environmental
disease.
Ms McManus: One of the biggest problems is that
we find, by the time people call us, they are quite desperate.
There is very little knowledge of the condition and people become
quite depressed and very isolated with the condition and the way
it has developed, because they are reacting to things in the environment.
A lot of professional health advisors do not believe that is possible,
so they become labelled. Obviously, because we are not medically
qualified, we have to check whether there is an underlying medical
condition there, so we do always check that they have been to
their GP for other tests to make sure there is not something else
wrong there. If there is not, we can give advice on how to avoid
chemicals within the home environment, how to avoid a chemical
load on their body if that is the kind of information that they
are looking for. We can give support because often they become
very isolated from their family and in their workplace. We have
advisers on our health advisory panel who are very knowledgeable
on chemical sensitivity. If there is nowhere else we do pass them
on to the British Society for Ecological Medicine where they can
get expert advice.
Q790 Viscount Simon: Do you get many
callers?
Ms McManus: Yes, a lot and we are getting more
unfortunately.[18]
Q791Lord Colwyn: Could all of you say what you
feel about the use of neutralisation/provocation tests? Are they
supported by Allergy UK and all of you?
Ms McManus: It is one of these tests that have
not undergone trials so we cannot support them. There are other
tests that we would not pooh-pooh because a lot of people do seem
to find benefit from them, but you have to be very careful when
you are deciding what clinics you go to. Many of these treatments
are done privately which is a big worry.
Dr Scadding: I did a paper 20 years ago trying
to disprove this. I was very cross about this kind of technique.
In a very small study it looked as though there might be something
in very low dose, sublingual desensitisation. I got so much flack
from the allergy community at that time that I largely stopped
doing it but now sublingual immunotherapy is accepted and there
is a Cochrane meta-analysis of high dose immunotherapy. If you
look at the ALK data on GRAZAX there is the beginning of a curve
and it may well be that there is an effect of low doses. I think
this needs proper scientific investigation in good hands on a
double blind basis. This will be somewhere to spend some experimental
money.
Dr Mills: I would endorse that. It is quite
important to understand this. In a study that was done in the
Netherlands looking at desensitisation to pollen, the individuals
lost their pollen allergy but they did begin to develop an allergy
to apple, which is related. This is why immunotherapy is a very
complicated therapy and it does not get rid of people's allergies.
It stops them perhaps expressing some of their symptoms and there
may be quite complex interactions with some allergies disappearing
and others reappearing.
Q792 Chairman: What was your response
to the answer we had from Mr Dillon from NICE?
Dr Scadding: I was a little shocked that NICE
is not prepared to look at sublingual immunotherapy or at immunotherapy
in general because it can cure allergic disease and it is the
only hope of curing it at the moment. Corticosteroids are pretty
effective but they do not cure the disease and it is a long term
treatment. I think the government and NICE should take the long
view about funding. It may be that immunotherapy is expensive
in the short term but if it can give long term results then it
is a long term cost-effective measure.
Q793 Lord Colwyn: We had a discussion
about pharmacists in the previous session. I wonder whether any
of you want to add to what Helen Young said when we discussed
whether the department were getting the correct advice from pharmacists
about which allergy treatments to use and when they should use
them?
Ms Covey: I would quite like to put in a plug
for pharmacists certainly with regard to asthma. We have just
done some work at Asthma UK with the Pharmaceutical Services Negotiating
Committee as a result of which we have produced a joint pack around
medicine use reviews on asthma because we feel that for some people,
particularly with follow-on advice, the pharmacist is a good place
to go if it is done properly for people who live with a condition
all their life and do not want to go back to a GP every five minutes.
The pharmacist is a real resource and we have had 10,000 of those
packs ordered already by local pharmacists. Obviously at the moment
pharmacy advice is still patchy but we see a real willingness
amongst certainly the trade bodies in pharmacy to work much more
closely with organisations like ourselves on some of these issues.
We are hopeful that in future there will be much more scope for
pharmacists providing advice so that people can get advice in
a much wider range of places when it suits them. One of the problems
is that, because people do not always like to go to their doctor,
they let things drag on and they get slowly worse. They do not
want to go to their GP unless it is really bad and it is half
a day off work. Quite often, the pharmacist can be a fantastic
stop-off point for people in that situation. The PSNC have done
this work with Asthma UK around these issues in asthma and we
are having a huge take-up already from local pharmacists so I
think that is really part of the way forward.
Q794 Chairman: You said 10,000 packs.
How many individual pharmacies are there in the UK? Does that
represent 10 per cent, 20 per cent or 50 per cent?
Dr Scadding: I think there are around 40,000.
Q795 Lord Colwyn: Would a pharmacist
be allowed to supply an adrenalin pen?
Dr Scadding: Not without a prescription. In
the field of rhinitis, which is my special area of interest, pharmacists
have been given ARIA in the pharmacy, the guidelines on Allergic
Rhinitis Impact on Asthma, which are very simple and very good.
The BSACI for a couple of years running sent down a single A4
sheet of the best treatments for hay fever which did go to all
40,000 pharmacies in the UK. Given that kind of advice, pharmacies
are a wonderful resource, but they should not be used to diagnose
allergy.
Q796 Lord Soulsby of Swaffham Prior:
I am detecting a much more positive attitude to immunotherapy
from you ladies than we have heard previously from other witnesses.
Maybe you heard earlier that we found when we went to Germany,
for example, that immunotherapy was quite popular. Could I bluntly
ask you, should it be more widely used in this country?
Dr Scadding: Yes. I think probably it should
be used very much earlier in this country. At the moment it is
reserved for patients failing on pharmacotherapy. However, if
you look at what happens in Europe there is a study looking at
children with rhinitis treated by immunotherapy and now after
10 years they are 2.5 times less likely to have asthma than a
cohort of children of a similar age treated with drugs. That progression
from rhinitis to asthma, which we see to have a threefold relative
risk, can be almost completely ablated by immunotherapy.
Dr Mills: I think it is also worth saying that
sublingual therapy offers a much better route for administration
than having the kind of conventional injections at frequent intervals,
it makes it much more realistic to use.
Ms McManus: I do not think people realise the
impact of something like allergic rhinitis or hayfever on people's
lives. They think that hayfever is quite a minor condition, but
it can impact dreadfully, particularly on children who are just
about to sit their exams right at the height of the hayfever season.
There has been research carried out that they do not do as well
in their exams as they did in their mocks earlier in the year,
so it is very important.
Q797 Lord Soulsby of Swaffham Prior:
We could take from you that we should include in our report a
positive statement that immunotherapy is something this country
should embrace a bit more?
Ms Covey: I think aligned with the point that
it is very important, as people have said, that we have more information
so that people are able to work out what is the best thing to
do, what is the lowest risk thing to do. Also, like Glenis, I
was sorry to hear what Andrew Dillon said earlier because really
until the Department of Health and NICE start moving issues like
this up the agenda then we are never really going to see a move
forward, so it is not just about it being more widely available
in theory, it is about it being more widely available in practice,
having proper guidelines and also a strong message that it is
a priority. The reality is that in busy general practices, in
terms of referrals and how people understand things, GPs are focusing
on the things they are being told are a priority, essentially
either because it has financial incentives for the practice attached
to it or they are expected in order to get the right number of
stars to do it. It would have to be wider availability aligned
with all those things, more information both for doctors and patients
so that it is available in practice and the right people get it
in the right way in the right place and at the right time.
Q798 Lord Soulsby of Swaffham Prior:
Where would one put the pressure to get NICE to look into it in
a more positive way?
Dr Scadding: I suspect directly on NICE, if
possible. Could I say that I think it is an absolute nonsense
that NICE is looking at omalizumab, which is a very expensive
treatment. It does not cure, it needs to be taken long term, it
is not particularly effective in severe asthma and they are considering
that and failing to consider immunotherapy which is a more effective
treatment and can be curative.
Q799 Chairman: Going back to the
diagnostic end of this, do you think that there is adequate regulation
for private clinics and the procedures which they offer for allergy
diagnosis and treatment, and how can the patients choose who they
should go to if they are going to a private service rather than
going through their GP?
Ms McManus: I think this is a very difficult
question. A lot of these private clinics are not regulated and
you only have to look on the Internet to see the amount of different
forms of allergy treatments that are popping up, some of them
are very, very strange that you have never heard of. Some things
should cause great concern like NLP, neurolinguistic programming,
where, theoretically, psychologically you can cure an allergy.
How you decide which one is good I do not know. We tend to give
NHS clinics because we know that they are going to be looked after
there, but there is just not enough of them, unfortunately.
18 There is nowhere on the NHS that sufferers can get
help, and it is not recognised by the medical profession as a
whole. Back
| 
