Joint memorandum by Dr Julia Clark and
Professor Andrew Cant (AL 43)
INTRODUCTION
This evidence is submitted by Dr Julia Clark,
Consultant in Paediatric Immunology and Infectious Disease and
Professor Andrew Cant, Consultant in Paediatric Immunology and
Infectious Disease.
Professor Cant and Dr Clark run paediatric allergy
services at Newcastle General Hospital, providing tertiary services
for the North East of England and secondary allergy services locally.
Professor Cant is a member of the British Allergy Society and
his allergy clinics are listed by them.
This document relates specifically to services
for children and discusses the authors' own experience
in the North of England, which has a paediatric (0-15 years) population
of approximately 500,000.
1. AVAILABILITY
OF ALLERGY
SERVICES
1.1 Overview. Childhood asthma, eczema,
rhinitis, food allergies and hay fever are usually seen by general
paediatricians and/or organ specific specialists. These may be
paediatricians but can often be adult doctors such as dermatologists,
ENT surgeons, immunologists or allergists, despite the suggestion
in the National Children's Service Framework that all children
should be seen by paediatric trained doctors. Food allergies are
more common in children than adults. More complex food allergies
such as multiple food allergies, unexplained allergic reactions,
chronic urticaria and angio-oedema, latex and drug or anaesthetic
allergies, as well as severe hay fever or severe rhinitis require
more specialised input, but at present are usually seen by a range
of adult or paediatric specialists or generalists with a large
variety of approaches. In terms of clinical governance, such cases
should be seen in a tertiary paediatric allergy service; nationally
there are about 10 centres providing this sort of service to some
degree, although only three have a dedicated paediatric allergist.
1.2 Current provision of paediatric allergy
services in the Northern Region; Secondary Service. We have
recently assessed the amount of paediatric allergy work done in
the Northern Region by circulating a questionnaire to clinical
directors in all districts with a 100% response rate. All are
undertaking some paediatric allergy work but none can fully quantify
it. Six out of 10 districts have a paediatrician with an interest
in allergy but these doctors are not necessarily supported by
a dietician or nurse specialist, who nonetheless do exist in some
districts without an interested paediatrician. Most districts
offer some form of service for investigating allergic disease,
all performing blood tests and 80% skin prick tests; some perform
challenge tests on children. Most dispense Epipens but with a
hugely varied incidence. 80% could not quantify the burden of
allergic disease in their district nor had hard evidence that
the burden was increasing. We therefore know that in the North
East 40% of Trusts do not have a paediatrician with an interest
in allergy. 70% have no paediatric allergy dietician and 60% no
nurse.
1.3 Children with asthma or eczema are generally
looked after by general paediatricians, respiratory paediatricians
or dermatologists. All Trusts within the North East of England
are well served by all of these professionals, thus local communities
have relatively rapid access times and some degree of choice depending
on the number of paediatricians available in each centre.
1.4 However, there is a huge variation in
the services available to children with food allergies or recurrent
chronic urticaria/angio-oedema. All Trusts outside Newcastle upon
Tyne NHS Trust would either have only one paediatrician with an
interest in allergy to see children, or arrange for all children
seen by any available paediatrician without a specific interest.
Thus GPs referring cases with food allergy or urticaria do not
have any particular specific service to refer into. As food allergy
is more common in children than adults, in children it is by far
the most common reason for allergy advice. Advice is primarily
food avoidance and a comprehensive management plan including age
appropriate antihistamines and adrenaline auto-injector where
appropriate. Dietetic information is paramount, a paediatric dietician
is therefore essential. Education in the safe and effective use
of adrenaline auto-injector and liaison with schools about this
is time consuming but essential and nurse input at this level
is also required. Few local hospitals at present have these combined
facilities.
1.5 Newcastle upon Tyne NHS Trust does have
a paediatric allergy service both for secondary and tertiary care.
Access for secondary care usually refers to referrals from GPs
to the local hospital and hence covers the population served by
the Trust. However, about 20% of new referrals come from outside
this Trust as GP secondary referrals. This means that some children
are travelling significant distances to a paediatric allergy clinic
when referred by their GP for "non specialist" allergy
services that should be provided more locally.
2. CURRENT SERVICES
OF PAEDIATRIC
ALLERGY IN
NORTHERN REGION;
TERTIARY SERVICE
2.1 Newcastle upon Tyne NHS Trust provides
a paediatric allergy service at Newcastle General Hospital. There
are five paediatric immunologists who all contribute to providing
a paediatric allergy service and one of whom provides specific
grass and tree pollen desensitisation, drug and anaesthetic diagnostic
investigations. There is one WTE paediatric allergy nurse specialist,
one senior dietician who covers all paediatric allergy clinics,
but these personnel are not specifically funded for the allergy
service and also cover other areas of general and specialist paediatrics.
There is unfunded pharmacy support.
2.2 This service actually provides secondary
care for its local population and tertiary care for the region.
Some secondary allergy care is also provided by other paediatricians
within the Newcastle upon Tyne NHS Trust. We are able to quantify
the number of children seen with allergy within Newcastle General
Hospital clinic, although for secondary referrals to the Trust
this will be an under estimate as it does not include those children
seen by other paediatricians. In the year 2004-04 360 children
were seen as new referrals, 34% (122) of whom were tertiary referrals.
46% (56) of these were referred from the rest of the region.
2.3 At present the tertiary regional centre
at Newcastle General Hospital provides most of the services outlined
in the Specialised Services for Allergy (definition No 17) document.
These include:
— Diagnosis and assessment of patients
with allergic disease.
— Provision of skin prick testing facilities.
— Facilities for challenge testing.
— Facilities for immunotherapy.
— Protocol and facilities for diagnosis
and management of adverse reactions during general anaesthesia.
— Protocol and facilities for the diagnosis
of local anaesthetic allergy.
— Systems for the investigation and
management of anaphylaxis including identification of cause, avoidance
advice, written treatment plans with appropriate training.
— Diagnosis, investigation and management
of adverse drug reactions.
— Diagnosis and management of latex
allergies.
— Expertise in the diagnosis and management
of angio-oedema and urticaria including C1 esterase inhibitor
deficiency.
— Advice on allergen avoidance.
— Advice on dietary exclusion/reintroduction
if suspected food allergy or intolerance.
— Consultation service to other specialties.
— Access to immunology laboratory service.
— Access to in-patient facilities.
— Education and teaching.
2.4 Waiting times for paediatric allergy
clinics at Newcastle General Hospital are from 12 to 16 weeks.
Outreach immunology/allergy clinics are provided once a month
to Carlisle in the North and North Tees in the South, waiting
times for these are 16 weeks and 22 weeks respectively. These
waits reflect the huge demand for these services.
2.5 To try and improve these access times,
a weekly specialist allergy nurse led clinic has just been established.
A specialist allergy nurse prescriber sees children with well-defined
allergies for diagnosis and management.
2.6 If tertiary services are required from
the rest of the region, then children may have to travel up to
two to three hours to get to the tertiary centre.
3. PRIORITIES
FOR IMPROVING
SERVICES
3.1 Allergy services for children as well
as adults have been recognised as one of the 35 nationally designated
specialised services. The development of a regional paediatric
allergy network is the ideal and the model towards which many
regions are trying to move.
3.2 Good links with adult allergy and immunology
services are vital and linking paediatricians into already established
services providing for children is essential.
3.3 In the North East we would like to see
a regional managed clinical network. This is supported by all
centres. A co-ordinated approach to the investigation and management
of paediatric allergy is desirable. From a clinical governance
and best practice point of view this also provides patients with
equity of access and consistency of approach and clinicians with
a support and advice network.
3.4 In a regional managed clinical network,
local paediatricians and organ based specialists would continue
to provide well-defined secondary care in district general hospitals
whilst working as part of a managed clinical network with a tertiary
centre seeing more complex cases. This would include specific
mutually agreed guidelines for certain allergic conditions seen,
indicating what can and should be managed locally and what centrally.
A quality assurance programme ensuring consistency of standards
and delivery would need to be agreed by all involved.
3.5 In order to move towards this goal,
district general hospitals do need further services. Each DGH
should have a paediatrician with an interest in allergy providing
clinics at least two sessions per week. These must be supported
by a paediatric dietician and a paediatric allergy nurse. Each
local DGH should have facilities for skin prick testing and blood
allergy testing and day unit facilities for specified food challenges.
3.6 The tertiary centre could drive the
regional managed clinical network, creating and disseminating
agreed guidelines, facilitating and encouraging peripheral sites.
To do this in the North East a specialist paediatric allergist
would be required. Increase in the co-ordination, provision and
delivery of services both secondary and tertiary could then be
expanded. Services such as desensitisation and drug and anaesthetic
testing, which are highly time consuming and at present only offered
to a very small and select population, could be offered to a wider
population. There are exciting potential new advances in treatment
such as monoclonal antibodies against IgE receptors, genetically
engineered specific and genetic vaccines for food allergies for
which there will be huge public demand and paediatric allergists
will be required in the not too distant future to co-ordinate
and deliver these.
3.7 Dietetic services are essential in the
effective provision of food allergy advice for both children and
adults and an effective paediatric allergy clinic cannot be run
without paediatric dieticians with skills in allergy. Service
improvement cannot be advanced without the provision of further
dietetic time.
3.8 Nurse led clinics. Specialist nurses
and nurse consultants are increasingly developing their role within
sub-specialties. They have a huge potential to play within specific
paediatric allergy services and nurse led paediatric allergy clinics
are now being introduced in Newcastle. They can provide a comprehensive
service for specific defined allergies such as food allergies
including egg, wheat, milk and peanut, continuity of care and
support. There is a potential increasing role throughout the region
for nurse led clinics.
4. GOVERNANCE
AND REGULATION
OF INDEPENDENT
SECTOR PROVIDERS,
AND LINKS
BETWEEN THE
NHS AND THE
INDEPENDENT SECTOR
4.1 We have little experience of providers
who provide paediatric allergy care within the independent sector
in the North East. Some general paediatricians do provide private
consultations and there are some clinics offering alternative
therapies. There are no providers for tertiary paediatric allergy
services in the independent sector. To our knowledge no one that
has provided independent paediatric allergy consultations has
also been able to provide dietetic advice, skin prick testing,
or nurse advice about avoidance and Epipen administration.
5. RECOMMENDATIONS
FOR ACTION
5.1 Encourage each district general hospital
to have a paediatrician with an interest in allergy, paediatric
dietician with an interest in allergy and paediatric nurse with
an interest in allergy.
5.2 Every region should have a tertiary
service that provides specialist paediatric allergy services which
is staffed by a paediatric allergist, paediatric allergy nurse
specialist and paediatric dietician.
5.3 Increase specialist nurse led paediatric
allergy clinics in the context of a managed clinical network and
specific guidelines.
5.4 Facilitate tertiary centres to implement
managed clinical networks with DGH's in their own region.
June 2004
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