Memorandum by Tayside University Hospitals
(AL 36)
I enclose the following documents for consideration
by the Enquiry Committee:
— the background discussion document
which led to the formation of Tayside's Allergy Advisory Group
in 2002;
— the Group's first four newsletters
for healthcare staff in our Region (not printed);
— our response to the "Take Allergy
Seriously" card, currently being sent to MPs; and
— the covering letter for an ongoing
survey of all Scottish GPs on management of anaphylaxis (not printed).
I hope that these will give the Enquiry an understanding
of some of the practical considerations and constraints that we
encounter in providing an allergy service for our Region, and
some of the initiatives we are involved with. I would be very
happy to enlarge on these in person if felt appropriate.
PROVISION OF ALLERGY SERVICE IN TAYSIDE OVERVIEW
Allergic diseases
— are very common, and becoming more
so;
— cause considerable morbidity; and
Current NHS provision of allergy care is generally
poor due to lack of
— formal training of healthcare staff;
and
— accredited specialists.
There is a recognised need to develop regional
allergy centres to provide
— educational resource; and
A proposal is suggested to form a multidisciplinary
group to
— promote integration of current providers
of care;
— advise NHS Tayside on local allergy
priorities and development;
— link regional centres and frontline
staff; and
— oversee education and clinical governance.
BACKGROUND
Definition
The use and meaning of the term "allergy"
has undergone many vicissitudes since it was first coined in 1906.
Current use in conventional medicine describes the clinical manifestation
of a hypersensitivity reaction to an external or "foreign"
substance (an allergen) which is mediated by immunological mechanisms.
Atopy
This refers to an inherited tendency to produce
IgE antibodies to naturally occurring allergens, and represents
a predisposition to allergic diseases, although atopic individuals
do not necessarily have clinical symptoms. The commonest atopic
diseases are asthma, rhinoconjunctivitis (hay fever) and atopic
eczema.
Prevalence
At least a third of the population suffer from
allergic disease. Asthma, hay fever and atopic eczema were uncommon
in the 1960s, but now affect 15-20% of UK children. Our current
westernised lifestyle (eg overheated/underventilated housings
reliance on processed foods, antibiotic overuse) and lack of childhood
infection (hygiene and smaller families) are thought to be important
factors in this rise.
Allergens
Allergens can be inhaled, swallowed, injected
or come into direct contact with the skin/eye/mucous membranes.
Common examples are house dust mite, weed and tree pollens, animal
proteins, fungi, foods such as milk/egg/nuts, drugs, latex, insect
stings and contact allergens such as nickel/cosmetics/medicaments.
Some of these produce symptoms within minutes of exposure ("immediate"
reactions), while others take longer ("delayed" reactions),
due to different immunological mechanisms involved. Some allergens
are able to cause both types of reaction.
Anaphylaxis
This most serious form of allergy can kill by
upper airway oedema, bronchospasm or circulatory collapse. Deaths
occur which should be avoidable. Anaphylaxis occurred in one in
3,500 of the UK population in 1994, and the incidence is rising.
Nut allergy currently affects over 1% of children and allergy
to latex occurs in up to 17% of healthcare workers—both
are potentially fatal.
Foods
Food allergy is perceived as common by the general
public, as many as 20% feeling that they suffer from this. The
true prevalence however, when confirmed by appropriate food challenge,
is estimated at 2-3%, although is higher in young children (up
to 10%) due to their immature immune system. Milk, eggs, peanuts,
tree nuts, fish and shellfish account for the majority of true
allergic food reactions. Non-immune reactions to foods also occur,
termed "food intolerance" and not allergic in nature.
HOW IS
ALLERGY CARE
CURRENTLY DELIVERED
IN THE
UK?
Primary care
Most clinical allergy diagnosis and management
takes place in Primary Care, but formal training for this is
virtually non-existent. There is heavy reliance on the prescription
of suppressive medication (antihistamines and steroids) without
properly tackling the underlying causes. Inadequate training can
lead to failure in recognising the problem as allergic in nature,
dismissal of the subject in the face of "more important"
competing disorders and inappropriate investigation.
Secondary care
In the UK, apart from children who attend a
paediatrician, those who are referred on to Secondary Care are
almost all managed by organ-based specialists who have an interest,
but are not formally trained, in allergy. This works satisfactorily
when the clinical manifestation is confined to one organ, but
allergic diseases are wide-ranging and often cross organ-based
disciplines. At present, there is an almost total lack of coordinated
NHS provision for speciality allergy services in the UK.
Investigation
Investigation of allergic disease relies heavily
on clinical history, which is time-consuming. This is backed up,
when indicated, by skin prick testing (safe for aeroallergens
but potentially dangerous for foods and latex), blood IgE levels
(always safe to perform, but expensive and prone to misinterpretation
by the untrained) and food challenge (time-consuming and potentially
dangerous).
Dietician
Patients who are diagnosed with food allergy
are referred to a dietician to supervise both the avoidance of
foods that contain the allergen(s), and also to ensure that the
diet is nutritionally adequate. This can be a very complex process,
but at present there is limited dietetic resource available to
guide patients through this potential minefield.
Immunotherapy
Immunotherapy is routinely performed for anaphylaxis
to wasp or bee venom, and in some centres for severe hay fever
unresponsive to medication. This treatment is now only given by
trained staff in hospitals where there is access to resuscitative
equipment, because of a number of anaphylactic reactions and deaths
when this therapy was allowed to be performed in an unregulated
manner in Primary Care by untrained staff in the 1970s and 80s.
Epinephrine (adrenaline)
Because of media attention and concern about
anaphylactic reactions, many patients (>30,000 in UK) are now
being prescribed parenteral epinephrine (Epipen). However, this
practice differs from centre to centre and guidance on its use
is often inadequate. Furthermore, this treatment is not without
potential hazard, and there is a lack of clarity on who should
receive it.
Complementary medicine
Inevitably, because of rising trends in allergic
disease, lack of specialists and public demand for diagnostic
and therapeutic expertise, many people now directly consult practitioners
of complementary medicine, where they are often subjected to dubious
diagnostic methods and treatments by medically unqualified staff.
Information
There are many very good information sites on
the internet for allergic disorders, and also some excellent voluntary
organisations. These do give generally sound advice, but are not
able to perform investigations or, more importantly, make a diagnosis
and plan of management in the way that a Health Professional team
are able to.
HOW SHOULD
ALLERGY CARE
BE PROVIDED?
Priorities
Allergic disease has been described as the archetypal
modern "plague" of civilisation, and is recognised as
the "number one environmental disease" by the World
Health Organisation. Although cardiovascular disease, cancer,
infections and mental illness dominate current health priorities,
the Health Service requires a robust mechanism in place to tackle
what will undoubtedly become a more pressing issue.
UK lags behind
Unfortunately, current provision of allergy
care in the NHS is generally poor, and the steadily increasing
demand by the public for professional allergy services is simply
not being met. This need for high quality allergy care is recognised
and developed in many other countries, but at present the entire
UK has only six comprehensive multidisciplinary allergy centres
(zero in Scotland).
Allergy specialists
The complexity, multisystem and life-threatening
nature of many forms of allergic disease has led to recognition
of the need to strengthen clinical and laboratory allergy services,
with expansion of the number of Consultant Allergist/Immunologist
posts. The Department of Health now recognises Allergy as a speciality
in its own right and a new Allergy CCST was introduced in 1999,
although it is likely to be many years before there are adequate
numbers of specialists as this is a small speciality with limited
training facilities.
Regional centres
The immediate aim therefore will be to develop
regional allergy centres to provide specialist expertise, educational
resource for both Primary and Secondary Care and geographical
equity of care. Some recent reconfiguration of allergy care has
taken place in Glasgow, with development of the anaphylaxis service
and funding of a new Consultant, but a further Centrally-funded
Consultant post for Scotland is currently unfilled.
Links to frontline staff
Regional allergy centres should be backed up
by appropriate "Managed Clinical Networks" and educational
programmes for all Health Professionals, with nurses, dieticians
and pharmacists playing an increasingly important role in the
delivery of allergy care. A comprehensive guide to allergy services
for all NHS professional staff should be developed.
Infrastructure
It will be important for local providers of
care to have an appropriate infrastructure in place to accommodate
future developments in investigation and management of allergic
disease.
Anaphylaxis
Patients with anaphylaxis require special mention.
This condition is genuinely life-threatening, often affects young
people, and provision of care has simply not been properly addressed,
as these patients require rapid access for assessment by a trained
allergist. It is important to have effective links with community
paediatric teams to oversee the management of schoolchildren with
anaphylaxis. A Scottish Registry and nationwide epidemiological
study into this emotive condition is desirable.
WHAT IS
THE CURRENT
POSITION AND
SCOPE FOR
IMPROVEMENT IN
TAYSIDE?
Allergy service in Tayside is currently provided,
as in most parts of the UK, by organ-based specialists and paediatricians,
backed up by a fully-accredited laboratory facility. Although
much of this service is of high quality, with particular areas
of expertise, there are often long waiting lists due to lack of
support staff, and some areas are at present poorly developed.
Respiratory medicine
At present, about 1,000 patients with allergic
airways disease attend NHS clinics each year. A further 1,000
per year are screened by the University Asthma and Allergy Research
Group for recruitment into clinical trials. In addition, the Research
Group's mobile screening van has so far screened five Primary
Care Practices for asthma and allergic rhinitis using skin prick
testing and nasal/lung function, with results fed back to General
Practitioners who may use the results if they wish. It is planned
to extend this research based screening service service to further
practices in Dundee and Perthshire, and develop a satellite centre
in collaboration with Child Health in Perth.
Skin prick testing for aeroallergens is usually
performed at the time of clinic attendance, unless further investigation
such as bronchial challenge testing is required. At present, however,
there is limited scope for discussing the results with patients
at the NHS clinics.
An improved open access service, dovetailing
with the current set-up, could be provided by the appointment
of a specialist allergy liaison nurse. This would allow skin prick
tests to be performed and informed management decisions given
at the time of consultation. This system could operate both within
existing hospital clinics and also in Primary Care throughout
Tayside, and would enable a proper one-stop service to be delivered
for a large group of patients. Funding for this post might be
considered from rationalising the use of blood tests for IgE levels.
Allergen immunotherapy is not at present conducted
within the Respiratory Medicine Department, but might become a
development in time.The Asthma and Allergy Research Group has
one of the highest research profiles for airway allergy in the
UK, publishing 47 peer-reviewed papers in the past two years.
It is important that research staff are not used to prop up the
NHS service.
Opthalmology
The Department has recently set up a service
for corneal diseases, which include allergic disorders. A number
of patients become allergic to eyedrops, particularly those with
glaucoma, which can be investigated by patch testing in Dermatology.
Otolaryngology
At present, treatment of allergic rhinitis varies
depending on clinician, previous treatment and investigation waiting
time, and patients are usually seen on three or four occasions
over several months by different doctors. There is no current
facility for skin prick testing at the time of consultation.
As with respiratory medicine, the service for
these patients would be considerably enhanced by the ability to
provide a diagnosis and management plan in a one-stop clinic.
This requires a multidisciplinary approach involving technician,
nurse and ENT surgeon, where questionnaire, naso-endoscopy and
skin prick testing are all performed at one visit. A decision
can be made there and then about the need for allergen avoidance,
medical or surgical treatment or immunotherapy, and appropriate
arrangements made. Savings from reduced clinic attendance may
be a means of funding the nurse who would do the skin prick tests
and counsel patients.
The Department is the recognised specialist
centre in Scotland for delivering immunotherapy. This form of
treatment for pollen allergy is not as yet funded by NHS Tayside,
despite current guidelines that it "should be offered in
specialist centres for those patients not responding to medical
treatment". The cost of setting up a clinic for 10 patients
is estimated at £12,000 pa, treatment courses lasting for
three years. Expansion of this service from clinical trial to
standard NHS treatment becomes feasible when the resultant reduced
requirement for currently prescribed lifelong suppressive therapy
is taken into account, particularly as there is evidence that
immunotherapy may protect against the future development of asthma.
Similar to eyedrops in opthalmology, a number
of patients become allergic to eardrops, which again can be investigated
by patch testing in Dermatology.
Paediatrics
The Department provides a dedicated clinic for
food allergy, which is much commoner in this age group than in
adults, but is compromised at present by inability to perform
double blind placebo-controlled food challenge (which is the "gold
standard" investigation of these patients) and limited nursing
(1.25 sessions per week) and dietetic (0.5 session per week) support.
These deficiencies should be addressed to enable satisfactory
provision of service for what is a common (10% of children) and
increasingly recognised (by the public) condition.
The Paediatric asthma clinic is constrained
by lack of facility for skin prick testing. Joint clinics are
conducted with the ENT Department only at present.
There are four different Education Departments
in the region, and a need for consistent allergy protocols, although
the Scottish Office have recognised the importance of this by
producing "Medicines for Children in Schools'. There are
problems with pre-school egg/playdough, and lack of Epipen and
general paediatric training in Primary Care.
Paediatric dermatology
A specialist Paediatric Dermatology Service
was introduced in Ninewells and Perth (one clinic each per week)
in 1999, with a further clinic every six weeks at Arbroath. The
Dermatology Department is looking to expand the frequency of these
clinics in Angus to tie in with the new ADTC, and is actively
considering expansion to include Grampian (at their request) and
North Fife regions.
About 50% of the workload of these clinics is
atopic eczema, which now affects 20% of UK children. Initial assessment
of new cases takes at least 30 minutes, and a good deal longer
is required to fully educate the parents about practical management.
Ideally, this should be done by a trained specialist nurse, which
at present only takes place at Perth. Treatment regimes for this
condition can be complex, and failure of treatment is usually
due to noncompliance/lack of knowledge, with resultant multiple
and wasteful prescribing. There is therefore a pressing need for
a specialist atopic eczema nurse, who would link between the hospital
clinics and the community setting to enhance the care of these
patients. Such an appointment would be expected to reduce costs
currently incurred on wasted prescribing and avoidance of some
admissions to hospital.
Many children with atopic eczema have or will
go on to develop allergic rhinitis or asthma, and about 10% have
concomitant food allergy or intolerance. A parallel asthma clinic
runs alongside at Ninewells, and a concurrent food allergy clinic
would also be desirable.
The Tayside Dermatology Department is this year
inaugurating a National Course onPaediatric Dermatology for specialist
trainees. There is a strong local research interest in Quality
of Life in atopic eczema, with development of indices for children
and infants.
Dermatology
Contact allergic dermatitis is diagnosed by
patch testing, annual attendance for this investigation 6-700.
The commonest allergens are nickel, perfumes and cosmetics and
topical medicaments. This service has for many years suffered
from a lengthy waiting list, although reorganisation of Consultant
duties has brought the waiting time down to a more acceptable
level, allowing the Department to begin introducing an improved
fast-track facility for some patients with eczema. Further improvements
to this service could be made with a modest increase in nursing
input, which would also enable development of a follow up clinic
to determine allergy relevance for audit purposes.
Chronic urticaria (nettle rash) is a frustratingly
difficult condition to both experience and manage. The Department
has recently set up a clinic for this condition, both to aid investigation
and develop novel forms of treatment. Nursing costs have had to
be borne inhouse to allow this to proceed, and at present there
is no dedicated dietetic input.
The Tayside Photobiology Department has an International
reputation for investigation of diseases caused by ultraviolet
(UV) light, many of which are thought to have an immune (allergic)
aetiology.
Gastroenterology
There is at present a general lack of consensus
with regard to Interpretation of food allergy, although it is
recognised that this is genuine in some patients. However, the
current inflammatory and neoplastic workload preclude significant
input into allergy service by Tayside medical staff.
Dietetics
There is a need to determine best practice for
dietetic intervention in food allergy, which requires time to
examine the evidence. The dietetic service is currently prioritised
due to lack of resource and pressure of workload in both Primary
and Secondary Care. There is no dietician with specialist expertise
available in Primary Care, and waiting lists are lengthy.
Anaesthetics
The Department has expertise, with several publications,
in local anaesthetic allergy. Investigation of such patients is
complex and time consuming, each case taking about half a day.
Occasionally other disciplines request skin testing for investigation
of anaphylaxis, where expert resuscitative facilities are deemed
essential. Latex allergy has considerable implications in the
operating theatre environment, and there are occasional cases
of allergic reaction to general anaesthetics. Training is also
delivered to healthcare professionals on management of anaphylaxis.
Definitive provision of a specific allergy service requires one
Consultant NHD per week.
Latex allergy
There have been 125 referrals (mainly nursing
staff) from TUHT and TPCT to Occupational Health in the past two
years for skin conditions, the vast majority for hand dermatitis,
and increasing numbers associated with latex gloves.
TUHT currently has latex policies for the care
of patients and operating theatre environment. There is however
no policy or training on the provision and use of glove wear or
hand care for healthcare staff. Some Practices in Tayside are
still using powdered latex gloves, which is dangerous for those
allergic to this (from mucosal contact with the latex containing
powder which is freely liberated into the air when removing the
glove).
All NHS Tayside healthcare staff should receive
appropriate training, and be actively surveyed for latex awareness
and practice. Latex allergy has potential medicolegal implications,
and can be fatal. A recent study from the West of Scotland highlighted
lack of awareness among the healthcare staff of two hospitals.
Anaphylaxis
This is a problem in Tayside. Adult secondary
care referrals are currently directed towards Dermatology or Respiratory
Medicine, but neither department is comfortable managing these
patients as the consultants are not trained "allergists"
and do not have the necessary facilities for challenge testing.
These patients require rapid access to a trained specialist, which
is simply not happening at present. In addition, General Practitioners
are receiving increasing numbers of requests for epinephrine injectors
(Epipens), and require guidance on appropriate prescribing.
The Trust Resuscitation Officers are increasingly
being asked to train healthcare staff in anaphylaxis management,
but are encountering problems with insufficient warning of and
large numbers of staff requiring training for immunisation programmes,
differing guidelines circulating within Specialities and Trusts,
and lack of standardisation of anaphylaxis kits which are not
geared to speedy and safe emergency use.
Immunology
At present, Tayside has a CPA accredited immunology
laboratory which is able to provide a comprehensive range of investigations
relating to allergy. It is important for Tayside that this facility
continues, which requires the presence of a Consultant Immunologist.
Much of the allergy workload centres on measurement
of IgE levels (RAST testing). Expenditure on this investigation
has dropped from £86,000 (1,674 requests with 11,462 tests
performed) in 2000-01 to £42,000 (1,583 requests with 6,163
tests performed) in 2001-02, achieved by rationalising allergen-specific
testing and communication with senders about what exactly is being
looked for. Further savings are unlikely unless skin prick testing
is expanded, but funding of requisite nursing staff for the latter
could be at least part-funded by this route.
There is currently a vacancy caused by the recent
resignation of Professor Kerr. This presents a golden opportunity
to advertise for a Clinical Immunologist with a special interest
in allergy, who would be able to both oversee the laboratory immunology
service, and also take forward a new clinical service for complex
allergy conditions, including anaphylaxis. It is possible that
the latter could develop into a Regional Service outwith Tayside.
Primary care
Most cases of allergy are looked after in the
community, where there is currently lack of both resource and
formal training. Improved detection of allergies by skin prick
testing would be expected to lead to reduced need for suppressive
medication by adopting appropriate avoidance measures. This could
be linked in to asthma clinics, which already run in many practices.
A case could also be made for the development of similar community
clinics for atopic eczema.
There is a need for comprehensive education
of all Primary Care Health Professionals in the field of allergy
to optimise appropriate referral and advice for patients.
HOW SHOULD
ALLERGY CARE
DEVELOP IN
TAYSIDE?
Because of current local deficiencies in allergy
service, increasing public demand for this need and difficulties
encountered by individual departments when trying to improve matters,
a group of senior staff recently met to discuss how best to take
this forward. It was agreed that an important first step would
be to form a multidisciplinary advisory structure (an "Allergy
Advisory Group"), which would have the following benefits:
1. It would allow those with a specific
interest in allergy to share expertise and promote integration
of services where appropriate.
2. It would enable those departments providing
allergy service to collectively agree local priorities so that
funding is targeted at the most appropriate areas.
3. It would act as an advisory and educational
group to provide guidance to Tayside public and healthcare staff
on matters relating to allergy that is clear, concise and consistent.
4. It would network with regional centres
of allergy expertise for appropriate advice and referral when
necessary, and to keep abreast of recent developments.
5. It would act as a fulcrum for audit,
clinical governance and research.
It is envisaged that membership would include
representatives from:
With allergy now recognised as a distinct speciality
and a pertinent report on the status of Immunology and Allergy
Services recently produced by the Scottish Executive, it is opportune
for NHS Tayside to consider how best to deliver this currently
under-resourced service in the future for the patients it serves.
The proposed Group would be able to feed into
the new NHS Tayside structure in an advisory role, giving a clear
picture of local priorities with regard to the future direction
of allergy care in Tayside, and how this could most cost-effectively
be provided. There is a strong feeling that much could be improved
at little extra cost.
It should be recognised that there is considerable
allergy expertise already operating in the region, and NHS Tayside
might consider the possibility of developing a Regional Allergy
Centre. A pre-requisite for this would be the appointment of a
Clinical Immunologist with a special interest in allergy.
The proposed Group wish to seek formal recognition
within the local Healthcare structure.
May 2004
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