Memorandum by British Society of Allergy
and Clinical Immunology (AL 24)
BACKGROUND TO
THE BSACI'S
EVIDENCE
The BSACI was established in 1947 as a professional
society to represent NHS based practitioners with an interest
in diseases of the immune system and in particular those multi-system
diseases seen by allergists and specialists in related disciplines.
The society currently has about 500 members.
These include:
— Consultant allergists (treating both
adults and children).
— Consultants in other specialities
with an interest in allergic disease (these include clinical immunologists,
respiratory physicians, dermatologists and ENT surgeons).
— Specialist registrars training in
allergy and allergy related disciplines.
— Scientists working on mechanisms
of allergic disease.
— Specialist nurses with an interest
in allergic disease.
The central aim of the BSACI is to enhance the
care of patients with allergic disease by improving NHS allergy
services. It seeks to do this by:
— Providing general support for the
membership.
— Lobbying for more capacity for the
NHS to diagnose and treat patients with allergic disease in the
UK.
— Setting standards of care for people
with allergic disease by establishing and disseminating guidelines
for management of common allergic conditions.
— Providing education in the form of
an annual scientific meeting and support for regional and local
educational meetings aimed at continuing professional development.
— Having editorial responsibility for
the leading allergy journal Clinical Experimental Allergy.
— Managing a database of allergy clinics
in the UK which is published on its website. This is the only
source of detailed and accurate information of which we are aware
that gives information on the capacity of the NHS for seeing patients
with allergic disease. This provides the BSACI with an accurate
picture of the current state of NHS based allergy services in
England.
For the purposes of this evidence the BSACI
regards allergy as covering the following conditions:
— Food allergy and intolerance, (including
nut allergies).
— Anaphylaxis (including reactions
to insect stings).
— Urticaria and angioedema.
— The allergist may also be involved
in the management of patients with migraine and irritable bowel
syndrome as well as patients with diseases such as chronic fatigue
syndrome where it is necessary to exclude allergy as a cause.
BSACI'S EVIDENCE
Unless stated this evidence applies to both
adult and paediatric allergy services.
SECTION 1: AVAILABILITY
OF ALLERGY
SERVICES (INCLUDING
ISSUES SUCH
AS GEOGRAPHICAL
DISTRIBUTION, ACCESS
TIMES AND
PATIENT CHOICE)
AND SPECIALIST
SERVICES FOR
SEVERE ALLERGIES
Allergic diseases are very common. (The allergy
epidemic)
It has been estimated that up to 15 million
adults and children in England will suffer from allergic disease
at some time in their lives with 10 million being symptomatic
at any one time1, Many of these people will have mild disease
that they will either self-manage or can be satisfactorily managed
at a primary care level. However, a major problem with management
in primary care is that because of the low profile of allergic
disease in secondary care GPs have virtually no exposure to the
diagnosis or management of allergic disease in either their undergraduate
or postgraduate training. This problem begins in medical school
as the lack of allergy consultants means most students get no
exposure to allergy clinical practice. The overall skill level
in primary care is therefore low resulting in at best a patchy
quality of care for patients with allergic disease2. An urgent
priority is to develop undergraduate and postgraduate training
programmes with a co-ordinated approach to continuing professional
development in allergy aimed at primary care. However, this can
be only be undertaken if specialist allergy services are expanded
to provide the leadership, capacity and organisation for such
a training initiative.
Referral Rates to Secondary Care are not a good
measure of demand for allergy services
It is sometimes suggested that if there were
a great demand for allergy services in secondary care, this would
be reflected in high rates of hospital referral and lobbying by
GPs through their PCTs for better services. However, rates of
referral in areas where there is an inadequate service (which
is virtually everywhere) are not a good guide to patient demand
for the following reasons:
— The skill level in primary care will
be lowest in areas where there is a paucity of secondary care
services. This means that the GP may not be aware that a specialist
opinion could benefit their patient and, even if they did recognise
this, there would be no one to refer them to.
— The capacity for seeing new patients
is so low that allergy practitioners limit their practice by not
advertising the service or by limiting the types of patients seen
to the specialist area in which they practise so that a comprehensive
service is not provided even though an allergy clinic is stated
as being present.
— Hospital managers under pressure
from waiting list targets discourage practitioners from taking
on more new referrals than they can see in the time available.
In extreme situations this approach can involve closure of the
service. Several clinics have closed in recent years including
those in Reading, the Isle of Wight and Liverpool where full time
allergists who retired were not replaced.
Where a comprehensive service with the necessary
capacity is available the new patient referrals approximate to
what would be expected from the estimated number of patients with
severe allergy. For example, in Leicestershire (population one
million) 2,000 new patient referrals a year with a current waiting
time of 13 weeks. In contrast a single part-time allergy clinic
such as the one that serves the South West (population five million)
would have a capacity of approximately 250 new patients a year
and yet have a similar waiting time. Referral rates and waiting
times for new patient appointment do not therefore relate to need
but to the level of service provided. A clear example of this
is the allergy service in Cambridge which had approximately 500
referrals in 1993 and 5,000 in 2003. This 10-fold increase was
due almost entirely to increased awareness of the service by local
GPs.
There is a large unmet demand for specialist allergy
services
It has been estimated that up to 2.5 million
people (5% of the population) suffer from allergic disease of
sufficient severity to justify referral to secondary care for
a specialist opinion.1, 3 Reasons for referral will include:
— Confirmation of the diagnosis, (including
exclusion of allergy as a cause of symptoms).
— Definition of the allergic triggers
of the disease, including situations where there is an occupational
element where identification and avoidance of the trigger is an
essential part of management.
— Patients requiring special investigations
such as challenge testing.
— Patients with unusual allergies.
— Patients whose disease is not controlled
on standard medication.
— Patients who require hospital based
treatments such as immunotherapy.
The current provision of NHS allergy services
in England is very poor1
The Royal College of Physicians have estimated
in their review of NHS specialist requirements across all disciplines
that 520 consultant allergy posts are required to provide a high
quality service. There are currently 26.5 whole time equivalent
(wte) posts in the UK (compared to approximately 500 for example
in respiratory medicine). The NHS allergy service in the UK (figures
are not separately available for England) consists of just 15
clinics run by specialists whose main interest is allergy and
86 clinics run by specialists from other disciplines who see patients
with allergic disease alongside patients with other diseases in
their speciality. Of the 15 clinics with a consultant allergist
only six approach an optimal level of service as defined by the
Royal College of Physicians4, five of which are in the South East
of England. Four of these clinics are staffed predominantly by
academic physicians employed by the university with a limited
clinical commitment. In the non-specialist clinics a comprehensive
service is often not provided with consultants only seeing patients
with disease relevant to their main discipline (eg ENT surgeons
seeing patients with allergic rhinitis), sometimes as part of
their general clinics. Such clinics, which comprise the majority
of UK allergy clinics, also have limited capacity running perhaps
one out patient session a week, (approximately four new patients
whereas a comprehensive service would expect to see at least 30
new patients a week). We have estimated that, at best the current
capacity is 50,000 new patients a year which would mean it would
take 50 years to see all the patients who currently should be
seen by a specialist.
What is happening to those people?
What is happening to those adults and children
with allergic disease who are denied the opportunity of consulting
an allergy specialist? There is no firm data on this, however
from the patient support groups it is clear that many are simply
not receiving any adequate NHS based medical intervention. A patient
with allergic disease will be faced with a number of unsatisfactory
health care options:
— Self-management: This is obviously
unsatisfactory where a diagnosis has not been made. Even when
the diagnosis is secure it is only appropriate for patients with
mild self-limiting disease such as mild seasonal rhinitis. The
person may rely on advice from a pharmacist who is unlikely to
have had any training in allergy. The allergy sufferer is also
vulnerable to the largely unregulated and ineffective products
advertised in the non-pharmacy retail sector.
— Private practice with an orthodox
practitioner: This can offer high quality but expensive care
which in any case is severely limited in capacity.
— Private practice with an alternative
practitioner: This is unsatisfactory for the reasons set out
below, (section three).
— Under NHS secondary care but allergy
not diagnosed as causing the problem: This occurs in cases
of anaphylaxis, drug allergy and severe asthma.
— Referral to an organ based specialist
without an interest in allergy (eg dermatologist, respiratory
physician, ENT surgeon, gastroenterologist): The allergic
basis of the disease will not be addressed leading to sub-optimal
management. Just as importantly the organ-based specialist rarely
addresses the other conditions that the patient often suffers
from allergy being a multi-system disease.
Indeed the BSACI would like to stress that one
of the great strengths of a comprehensive, dedicated allergy service
is that the consultants are trained and equipped to deal with
all the organ specific conditions associated with allergy in a
holistic manner. This is both more cost effective than visits
to multiple organ based practitioners and improves patient management.
Apart from consultant allergists the two main
specialities seeing patients with allergic disease in about equal
numbers are clinical immunologists and respiratory physicians.
The BSACI recognises the important contribution that these specialities
make to the provision of allergy services. Both specialities include
the management of allergic disease as part of their training (to
a greater extent with clinical immunology than respiratory medicine).
Indeed, several clinical immunologists regard patients with allergic
disease as their main interest. However, the majority of clinical
immunologists and respiratory physicians have a considerable workload
caring for patients with diseases relevant to their main interest
(managing the immunology laboratory and immunodeficiency in the
case of clinical immunologists and chest disease for respiratory
physicians) and do not have the time or often the inclination
to develop allergy services. The BSACI believes that allergy services
should be provided by a cadre of consultant allergists fully trained
in that speciality who can lead the service in their area working
in concert with other relevant specialities in a multi-disciplinary
manner.
In summary therefore, despite allergy being
one of the commonest causes of ill health in England, the current
NHS allergy service is vestigial with a very poor level of knowledge
in primary care and derisory capacity in secondary care, which
in any case is being provided in large part by specialists in
other disciplines.
SECTION 2: PRIORITIES
FOR IMPROVING
SERVICES
The major priority is to create a high quality,
comprehensive specialist allergy service in the secondary care
sector across the whole of England. The BSACI therefore fully
supports the strategy outlined in Allergy the Unmet Need1 and
further elaborated in the NASG document Making a Start3 for the
establishment of a core of regionally based allergy centres that
will lead the service in each area.
As a minimum this requires the creation of 32
specialist wte allergy consultant posts covering adult and paediatric
allergy (two FTE of each for each centre). This in turn requires
the establishment of sufficient specialist registrar training
posts. There are currently five allergy trainees, all in the southeast.
A new centrally funded post has just been awarded to Leicester
in 2004. The Department of Health's medical workforce advisors
have recommended that 10 centrally funded posts are required for
2005-06 and a further 10 for 2006-07 to provide trainees for expansion
and replacement posts. Although not all the consultant posts are
required immediately, they need to be guaranteed so that the trainees
can plan for their future.
Obtaining centrally funded training posts is
essential. One frustration for the BSACI has been that over the
last few years the workforce planning process has recommended
that allergy be awarded several centrally funded training numbers
each year only for the Department of Health not to award any.
For example in 2003 it was recommended that allergy be given seven
centrally funded posts and yet none were awarded. No reasons for
this lack of support were given. The post awarded in 2004 was
the first that was centrally funded in the last three years and
only the second in recent years. None of the five unfunded numbers
that are currently available have been taken up, once again emphasising
the difficulty in persuading local providers to make allergy a
priority.
Implementation of this plan requires central
support from the Department of Health. If it is left up to local
commissioning there will be no expansion. Indeed a further contraction
of the service is predicted with retirements and may be further
reduced because of pressure on academics to do less clinical work.
Local commissioning will not suffice because allergy is currently
a low priority for PCTs. The evidence for this is as follows:
— The Department of Health provided
a list of 30 PCT leads who were responsible for allergy services
in their strategic health authority. We contacted the named individuals
in January. At the time of writing only seven have responded.
Of these only one said that allergy was a priority and in this
case commissioning was based on a block contract so that the PCT
had no influence.
— Of 29 MPs who contacted their PCT's
to enquire about allergy services 17 have had no reply. The 12
PCTs that did reply were complacent about their service. One,
astonishingly, considered allergy to be rare and another was satisfied
with an adult service run by a GP with a special interest (there
is no training programme for GPwSI in allergy). Other PCTs regarded
allergy as the responsibility of organ based specialities such
as dermatology and ENT and others expressed satisfaction with
the service based on the fact that waiting time targets were being
met.
— Without local champions services
are not developed. The competition for resources for the development
of new services at a local level is intense especially where there
is no national framework for development. In this climate a speciality
such as allergy which lacks lead clinicians in secondary care
to lobby for enhancement of the service will never become a priority.
This is a major factor behind the present underdeveloped status
of the NHS allergy service.
— Even with local champions it has
been difficult to persuade local commissioners to provide resources
to support allergy services. Members of the BSACI in the North
West invested a considerable amount of effort in developing a
strategy for the development of allergy services in their region
and produced a document (NICWAS) which has been submitted as evidence
to the committee, which was agreed by all parties including the
North West Specialised Commissioning Group. However 15 months
later there have been no resources set aside by local commissioners
to implement it with no prospect of them doing so.
In summary the key priority is to develop NHS
secondary care based services for allergy by central support to
create new consultant and training posts. This will allow the
establishment of regional centres to provide a core service which
can provide a high quality level of care for patients with more
severe and complex disease and lead further development of the
service in primary care and other secondary care centres.
Governance and regulation of independent sector
providers and links between the NHS and independent sector
The independent sector consists of orthodox
and unorthodox approaches to the practice of allergy. By orthodox
we mean practitioners whose practice is based on scientific evidence
and by unorthodox (alternative or complementary) we mean practitioners
whose approach is not limited by adherence to such precepts.
Orthodox
— Medically qualified private practitioners
practising orthodox medicine: This sector is small not least
because there are so few consultant allergists. The BSACI supports
NHS based practitioners undertaking private practice as long as
it is within the terms of their contract and appropriate measures
are in place to ensure good clinical governance.
Unorthodox
— The retail sector: This includes
pharmacies (not including regulated medicines), health food shops
and life style magazines. The sector is almost wholly unregulated
offering treatments and tests which for the most part are ineffective.
The BSACI has no data on the size of this sector but would imagine
in financial terms it is considerable. We also have no hard information
on the range of products available or their potential for doing
harm. We would welcome an enquiry into this sector to determine
if it requires better regulation.
— Medically qualified private practitioners
following alternative practices: Doctors in this sector almost
invariably do not have any formal training in allergy or related
disciplines.
— Non-medically qualified private
practitioners following alternative practices.
The BSACI fully subscribes to the concept that
the practice of medicine including the management of allergic
disease, should be based on scientific evidence with diagnostic
tests and treatment subjected to rigorous evaluation in well conducted
studies preferably using randomized double-blind placebo-controlled
study designs. Where such evidence is not available research should
be encouraged and in the meantime practice should be based on
consensus opinion. The BSACI's main concern regarding the independent
sector is with practitioners of alternative approaches to management
of allergic disease and the remainder of the BSACI's submission
refers to this type of provision.
Alternative allergy is a multi-million pound
industry that includes a wide range of practices. These include
retailers selling herbal and other remedies to tests undertaken
by mail order to clinics in which a variety of investigative and
management approaches are undertaken. Some alternative allergy
practitioners also make new diagnoses. This includes "multiple
chemical sensitivity" which the great majority of doctors
do not believe exists. These approaches were described in a detailed
report by the Royal College of Physicians in 19925, and a review
article in the leading international allergy journal6. It is outside
the scope of this evidence to describe each alternative approach
in detail and only passing reference will be made.
A major reason why alternative approaches to
the treatment of allergy are so popular with patients is that
for the reasons described above, they receive such a poor quality
of care from the NHS. The negative effects of seeking advice and
treatment from the alternative sector are both financial in that
consultations and remedies are often expensive, especially when
ineffective, and medical in that wrong diagnoses can cause unnecessary
concern and lead to inappropriate treatments including potentially
injurious diets.
There are a large variety of alternative approaches
to the management of allergic disease. Many of these, for example
iridology and VEGA testing, have no basis in any accepted view
of science or medical practice. Others such as the leucocytotoxic
test have a pseudoscientific veneer that implies a rational basis
which is in reality non-existent: others eg acupuncture, are based
on eastern medical practice and are more widely accepted while
yet others such as testing for specific IgG to food allergens
have a potentially rational scientific basis but are of unproven
benefit. Unorthodox practices include:
Alternative Diagnoses
— Multiple chemical sensitivity.
— Allergy to Candida albicans.
Investigations
— Catatonic food testing.
— Measurement of food specific IgG.
Treatments
— Provocation-neutralisation.
— Osteopathy and Chiropractice.
The view of the BSACI, after studying the available
literature, is that the great majority of alternative approaches
to the management of allergic disease have little if anything
to add over and above orthodox approaches. At best they are harmless,
except for the financial cost, but ineffective, and at worst they
can cause harm. We do not believe the NHS should be paying for
services from the alternative sector unless the practise is supported
by good evidence that it is effective and safe. The BSACI recognises
that patients will often gain some clinical benefit from seeing
an alternative practitioner as a result of a placebo effect. We
also recognise that views of what is the "correct and orthodox
way" to manage a condition can change, often radically, in
the light of new evidence. We therefore fully support further
research into alternative practices as long as there is some rational
basis for believing that the approach may bring benefit. Where
new evidence comes to light the BSACI is absolutely willing to
change its views. We also recognise the patient's right to seek
alternative approaches to management of their disease especially
where orthodox medicine has let them down either because of sub-optimal
management or the lack of understanding of a disease. We would
contend that patients with allergic disease are constantly being
let down by the NHS because of the paucity of NHS allergy services.
We believe the best way to protect patients from unscrupulous
or misguided practitioners of unorthodox allergy services is to
improve NHS based services.
May 2004
REFERENCES
1. Royal College of Physicians. 2003. Allergy
the Unmet Need.
2. Levy, M L, D Price, X Zheng, C Simpson,
P Hannaford, and A Sheikh. 2004. Inadequacies in UK primary care
allergy services: national survey of current provisions and perceptions
of need. Clin Exp Allergy 34:518.
3. NASG. 2003. An NHS plan for Allergy.
Making a Start. National Allergy Strategy Group. (Evidence
submitted separately).
4. Royal College of Physicians. 2004. Allergy:
Consultants Working with Patients. Royal College of Physicians.
5. Royal College of Physicians, 1992. Allergy.
Conventional and alternative concepts: Royal College of Physicians
report on Clinical Immunology and Allergy.
6. Ziment, I, and D P Tashkin. 2000. Alternative
medicine for allergy and asthma. J Allergy Clin Immunol 106:603.
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