Memorandum by the National Allergy Strategy
1. Allergy is a national health problem.
There are no class, and no material regional, differences in its
distribution. The burden of need falls equally across the population,
and is substantial. It therefore requires a national effort to
secure fair access to appropriate services. This has not been
forthcoming and there is substantial unmet need.
2. The NHS is now organized to provide its
services through regional and, to a greater extent, local structuresPrimary
Care Trusts (PCTs) hold 85 per cent of budgets. One major problem,
therefore, is how to address a national health issue which has
not been addressed previously through a devolved NHS.
3. Allergy presents a problem of high need,
low provision and hence a substantial service gap.
4. The consequence is that a very large
number of people are being treated without a correct diagnosis
or in the wrong way (for example treating symptoms rather than
diagnosing the allergy and avoiding the allergic trigger).
3. The DH has conceded the problem. But
the Department proposes to rely (even more than previously) on
local and regional agencies to provide solutions. Yet, as DH has
also conceded, PCTs know more or less nothing about allergy and
most have no local expertise to call on and no information on
the allergy needs of their population. Specialist allergists are
needed to lead change, yet these are few in number and there is
no investment in training to provide more of them for the future.
How in this situation can the NHS be helped to orchestrate a national
5. Allergy presents today a clear and present
challenge in this respect. But through time other new diseases
will also require a national response from a devolved NHS. In
this sense, allergy might be seen as presenting a test of how
the NHS in the future could face up to future health challenges.
At the very least, some way needs to be found to:
(a) get more doctors (and other health care
professionals) with the relevant expert training into service
(b) set up pilots or demonstration projects,
showing what a model new service could deliver, from which the
rest of the service can learn.
Effect of lack of service on research
6. Although this is much needed the UK produces
little clinical research in allergy. Lack of NHS service results
directly in absence of research capacity. Research requires a
specialist service with large cohorts of well studied patients
and clinicians with expertise in centres where research is a priority.
This in turn requires clinical leadership in both adult and paediatric
allergy. The UK has a tiny specialist workforce (there are only
26.5 whole time equivalent consultants in allergy)for a
huge burden of disease (allergy affects 20 million people of whom
about seven million require specialist help).
7. For the reasons set out above, many answers
to the questions posed in the Terms of Reference are going to
be equivocal. NHS staffing/expertise/clinics/data systems/ modes
of treatment etc do not, for the most part, recognise allergy.
And so, the basics are not there for the NHS to be a resource
for knowledge generation about allergy. Information does exist,
but in small pockets, where there are specialist allergy centres,
and bodies such as the British Society for Allergy and Clinical
Immunology (BSACI) have collected and analysed the published data.
Consequences for patients
8. People with allergy (or who think they
or their child have allergy) are having to make their own judgments
about what to do. This in turn has several consequences:
unregulated and sometimes dangerous
private practice; and
failure to make an accurate allergy
Both false positives (labelling a problem as
allergy when it is not) and false negatives (failure to recognize
or even consider allergy) are commonthis inaccurate diagnosis
results in bad management and ongoing disease. The need for diagnosis
is central. Across the NHS, allergy diagnosis is not being made,
because staff in primary and secondary care are not trained to
do this. Investment in expertise in allergy is required to make
9. Estimates of the numbers of patients
where allergy diagnosis is required and where specialist referral
is needed are available (see Nature and Extent of Allergy in the
UK, BSACI 2006). The current capacity of all NHS allergy clinics
is only about 2 per cent of those needing hospital referral (not
allowing for the fact that many of the allergy clinics run by
consultants in other specialties, deal with limited areas of allergy
and do not have the expertise or facilities, to undertake more
complex investigation) (An NHS Plan for Allergy: Making a Start,
NASG 2003, information prepared for the Health Minister).
10. The most serious problems occur for
people with multiple allergy (allergy expressing itself in several
different ways eg eczema, asthma, anaphylaxis etc)and for
What is allergy?
11. Allergy is described in the Royal College
of Physicians (RCP) Report "Allergy the unmet need"
chapter 1, p 3-6. Allergic diseases are wide ranging and cross
the traditional organ based specialties within medicine.
12. It is important also to consider what
is allergy practice. What does an allergy clinic deal with? This
is not restricted to diseases mediated by allergic antibody (IgE),
but depends more on presentations of illness, rather than the
mechanism. Allergy services deal with many diseases unrelated
to IgE, such as non allergic rhinitis, forms of anaphylaxis, angioedema,
tongue swelling, drug "allergy" and food intolerance
and have an important role in excluding allergy as a cause of
13. The other aspect is the additional value
offered by an allergy service. A particular disease might be appropriately
dealt with in other parts of the NHS (eg asthma in primary care
or by a respiratory physician where the focus is on drug treatment
to control symptoms), but what an allergy service adds is the
diagnosis/management of allergy. For the most part this is not
taking place in the rest of the NHS. Because allergy commonly
has multiple manifestations, the `added value' of an allergy specialist
is also in being able to deal with the whole patient in a single
service, rather than picking off symptoms one by one and requiring
referral to a series of specialists.
What gaps exist in establishing the overall disease
burden for all types of allergy and what are the barriers to filling
14. An assessment of the burden of allergic
disease in the UK was undertaken by BSACI in 2005 for the DH review
of Allergy services, 2006 ("Nature and Extent of Allergy
in the UK"). This was evidence-based using published data
on epidemiology for each disorder where allergy might be involved,
and severity, complexity and co-morbidity (several conditions
occurring together in an individual).
15. From these data, service implications
could be calculated: first, the number which could be treated
by self care or in primary care with symptomatic treatment without
need for a formal allergy diagnosis and the number where an allergy
diagnosis was needed; and second, the number which could be managed
in primary care (assuming the conditions required to improve allergy
knowledge were met) [13 million people] and the number where referral
to an allergy specialist was required [up to seven million].
16. Despite the gaps in information, therefore,
a count can be made of the amount of allergy. BSACI data shows
that there are >47 million disease episodes or >20 million
people who have a disorder where allergy may be involved.
17. Gaps were evident for:
(i) Prevalence of urticaria, angioedema,
drug allergy and latex allergy and there was incomplete data for
anaphylaxis of any cause.
(ii) It is also not known how many people
falsely believe they have allergy and act, or are encouraged to
act, as if they do so. Or their doctor takes action without a
proper diagnosis. Important areas here are drug and food allergy,
with medical and cost implications from incorrect diagnosis. The
number wrongly labelled is likely to be in excess of seven million
people for food allergy and several million for penicillin allergy
(iii) In a proportion of these, investigation
to exclude allergy needs to be undertaken, so that appropriate
management can be put in place. No estimate is available.
(iv) There is also insufficient information
to suggest estimates of the numbers of people in the country who
have an illness with an allergic cause which has been left undiagnosed.
Whilst there is considerable data on aspects
of co-morbidity taken from the perspective of a single disorder
(especially for rhinitis/asthma/eczema), there was no data in
other areas. Documentation of the extent of multiple allergy (the
number of diseases in the same patient) is not available.
(vi) There are several newly emerging
allergies, and absence of data capture on these, for example,
sesame and fruit allergy. There is now data on peanut allergy,
the epidemic of the 1990s, but little information on other nut
(vii) NHS statistics on allergy are
(a) This is partly due to the failure
to "code" allergy work. An allergy code was introduced
in 2005 but has only been adopted in the few specialist allergy
centres, and even there only applies to day case work.
(b) This is also due to failure to recognise
allergy across most of the NHS. And, even when recognised, recording
of allergy is not mandatory in GP data systems.
(c) NHS statistics on hospital admissions
are available for a few conditions (with the caveat of under-recording,
so failure to make the allergy diagnosis). Anaphylaxis admissions
have risen seven fold in 10 years (Gupta et al 2004) but
the absolute numbers give no indication of the real extent of
the burden, as most anaphylaxis is treated in A&E, and does
not appear in NHS admission statistics.
(viii) Effect on Quality of Life. There
are data, but most of this is anecdotal although compelling, from
the patient organisations, Anaphylaxis Campaign and Allergy UK,
who receive thousands of calls to their help lines which reveal
effects on quality of life from (i) failure to get medical help
and (ii) coping with the disease.
(ix) Effects on cost to NHS from failure
of allergy diagnosis hence appropriate management. Estimate of
direct/visible costs of NHS care can be made. The effects on patients
and on the cost of failure to diagnose are of an order of magnitude
greater. Avoidance of the allergic trigger can ameliorate further
acute disease episodes, well documented for food or drug allergy
(see BSACI paper, Effectiveness of allergy interventions, 2006).
18. The major reason for these gaps in data
is the lack of NHS specialist services in allergy, combined with
lack of knowledge and awareness of allergy in primary care. Without
a service baseparticularly given the way Government research
priorities are so closely aligned to clinical emphasisthere
is no effective research and data base from which to build.
In addition to the impact on the health service,
what is the overall socio-economic impact of allergic diseases
(for example, absence from work and schools)?
19. The same issues apply as above: one
needs a service to make a diagnosis before impact can be measured
scientifically. Some data is available for certain disorders eg
nut allergy, venom allergy. Nut allergy causes more stress for
families than a diagnosis of diabetes (Avery et al 2003).
Bee or wasp venom allergy can cause life threatening anaphylaxis,
a common symptom of which is a feeling that the patient is going
to die. This fear is reduced by allergen immunotherapy (Oude-Elberink
et al 2003), a treatment which is highly effective, "switching
off" the allergy, yet it is hardly available to UK patients.
However, Allergy UK and Anaphylaxis Campaign,
can give extensive qualitative data on this, from their help lines.
Allergy leads to huge stress and anxiety, unnecessary illness
and loss of time from work or school, and is exacerbated by the
failure of the NHS.
Is the level of UK research into allergy and allergic
Basic and clinical research
20. The major problem with allergy research
in the UK is that it lacks a clinical or human resource base.
Basic research relies on a few talented individuals. Clinical
research requires clinic capacity, excellent clinical practice
and clinicians whose main focus is on allergy, enabled to investigate
well worked up patients in sufficient volume for expertise in
patient management to be built up.
21. Basic research. There is excellent
basic research into allergy in UK, where we are world leaders,
but this is limited to a few centres, and dependent on a small
number of senior academic staff. Its continuation is not guaranteed
and the situation is fragile. The loss or retirement of one or
two research leaders will greatly diminish our research base.
22. Clinical research. There is
a serious lack of clinical researcheven fewer centres,
than academic centres in allergy related researchand need
for substantial expansion here.
23. Examples follow: At what might appear
to be a very basic level, information on the value and interpretation
of diagnostic tests is needed. Most doctors do not know how to
interpret these tests; thinking, incorrectly, that a positive
equals an allergy diagnosis. Clinical research is necessary to
throw light on this eg in nut allergy, a "grey area"
has been identified in the so called "positive" range,
where 50 per cent of patients are allergic but 50 per cent are
tolerant (Clark & Ewan 2003). Another development is to identify
the level in a test result above which nearly all patients will
have allergy (Sporik et al 2000; Hill et al 2000).
There are other examples eg studies on how best to manage nut
allergy with evidence on efficacy (Ewan & Clark 2001; Ewan
& Clark 2005). Such evidence can then be rolled out into clinical
practice across the NHS.
24. This type of work requires specialist
clinics with well studied patients, and clinicians with research
facilities. In the UK there are only six such clinical services.
The two substantially largest clinics see about 5,000 allergy
patients each per year.
25. The role of allergy in asthma deaths.
Deaths provide a clear end point. Unfortunately, the recording
of asthma and allergy deaths has become compounded and asthma
tends to be recorded to the exclusion of allergy (usually because
of misdiagnosis) (Pumphrey 2004). Allergic asthma appears to be
an important cause of sudden death, yet there has been virtually
no study of this. New data is beginning to emerge from the Eastern
Region confidential enquiry into asthma deathsthe first
such enquiry with any allergy inputbut there has been great
difficulty obtaining funding for such work. This has important
implicationsfor most of these deaths were in patients on
standard asthma medication (ie apparently appropriate management),
but the mistake was that allergy had not been considered.
26. Clinical guidelines are much needed.
The lack of specialist clinical leadership in allergy in the UK
(and very little NHS funding for allergy) makes clinical allergy
researchand its translation to guidelines for practice
etcvestigial. It is not commensurate with the size of the
problem and burden to the NHS. 20 million people have allergy
at some time and about seven million need a specialist service
(ie could not be expertly and safely diagnosed and managed in
primary care). The direct cost for managing allergic problems
has been estimated at £1 billion pa (Gupta et al 2004)
but the reality is that much of the cost is invisible and incalculable
because patients are undiagnosed. More capacity is needed. The
essential first step is to increase the number of consultant allergists:
there are only 26.5 wte consultants in the UK; and the limiting
factor to expansion is the very small number of trainee placesonly
eight for the UK (not enough even to replace expected retirementsDH
workforce data). This is a vital step, identified in previous
27. As research priorities are so closely
linked to national clinical priorities, it is not easy to obtain
research funding for a discipline with no priority. There is therefore
a "double whammy".
How effective have existing Government policy
and advice been in addressing the rise in allergies?
28. On Policy For Service Development In Allergy
(i) The problem allergy presents to government
is how to make a start to address a national problem with a devolved
(ii) The Royal College of Physicians gave
unequivocal advice on how to do this three years ago: the first
step is to get more specialists in allergy into the system. This
would begin to create critical mass and improve the geographic
distribution of allergy expertise. From these centres, support
for other providers of allergy care and enhancement of services
across primary and secondary care would flow. Normal processes
could then take over.
(iii) The House of Commons Select Health
Committee (2004) endorsed the RCP Report and said that there should
be an increase of 20 adult and 20 paediatric allergy training
posts for doctors, and a commitment to create consultant posts
for them to move into.
(iv) The DH has implicitly rejected these
recommendations as too centralist (2006).
(v) The DH recognise the need to increase
the specialist workforce in allergy but say this is a problem
for Strategic Health Authorities and Deaneries to deal with. However
the DH advice carries no requirement for action.
(vi) The DH propose to leave the rest of
service development to PCT commissioners. But it is known that
PCTs lack the input and conditions to do this.
(vii) Policy is needed to enable some action
and move forward from this position. One way PCTs might be helped
is by example, from a pilot scheme. What are needed are model
services, which are working on the ground. These might be studied,
used to train more specialists to seed out to new centres, work
with primary care and inform on the most efficient way of developing
services. DH might be asked to consider a national challenge fund
for locally programmed developments, from which others can learn
within the devolved NHS. This could provide an engine for major
service development outside central priorities.
29. On specific policiesGovernment
advice to tackle rise in allergies: little advice has been
forthcoming. But there is a lack of evidence on what to do. For
example, the DH advice on prevention of nut allergy (1998) was
not evidence based, because of lack of evidence.
What can be done to better educate the public
and to improve the quality of information that is available to
patients and undiagnosed sufferers?
30. The first problem is inability to get
an allergy diagnosis. This is widespread because of serious deficiencies
in primary and secondary care allergy services. Education resources
will have most impact once the correct diagnosis is made.
31. Some of the advice available direct
to patients is of poor quality and highly misleading. Support
for the work of the patient support groups, Anaphylaxis Campaign
and Allergy UK, is required.
Are current regulatory arrangements, for example,
those governing private clinics offering diagnostic and therapeutic
services and the sale of over the counter allergy tests, satisfactory?
32. Unorthodox and unsubstantiated practices
including methods of diagnosis abound in the private sector (tests
of no value are described in the RCP Report p 76-77). This is
in part driven by absence of NHS allergy services. Many patients
get the wrong diagnosis. This sometimes leads to medical harm;
or financial problems for the patient; and wastes NHS fundingunproven
private treatment is being paid for by some PCTs.
33. Even the established tests (specific
IgE antibody)without interpretationcan be misleading.
Thus sales of these direct to the public eg supermarket, high
street or through the media are harmful. Patients are diagnosed
allergic when they are not and inappropriate management follows.
Furthermore, there is a lack of quality control and tests in these
laboratories can be positive when the same test in a CPA accredited
laboratory is negative.