Memorandum by Dr R S H Pumphrey (AL 21)
Dr Richard Pumphrey is a consultant Immunologist
and Clinical Manager of the Immunology Laboratories that provide
a Regional Immunology Service for the North of Wales, East Cheshire,
Greater Manchester and northwards. His unit also provides a full
time allergy clinic service and has done much to develop and support
both adult and paediatric allergy services for the North West.
He also acts as a medical adviser to the Anaphylaxis Campaign
(a patient protagonist group for patients with severe allergies).
SUMMARY
This memorandum is to bring to the attention
of the inquiry the ongoing epidemiological studies on severe allergic
reactions carried out at the Immunology Service at Central Manchester
and Manchester Children's University Hospitals Trust.
SPECIALIST SERVICES
FOR SEVERE
ALLERGIES
1. A register of all fatal anaphylactic
reactions in the UK has been maintained since 1992. This has provided
invaluable information about the basic epidemiology of fatal acute
allergic reactions, what makes allergies dangerous and where efforts
should be concentrated to reduce fatalities. It has been possible
to confirm only 20 acute allergic fatalities each year but there
are reasons to believe this is an underestimate. Work continues
to improve the accuracy of diagnosis in such fatalities. Publications
arising from this include:
Pumphrey RSH. Lessons for management of anaphylaxis
from a study of fatal reactions. Clin Exp Allergy. 2000;30:1144-50.
Pumphrey RSH. Fatal anaphylaxis in the UK, 1992-2001.
2004. Anaphylaxis. Wiley, Chichester (Novartis Foundation Symposium
257) 116-132.
Pumphrey RS, Roberts IS. Postmortem findings
after fatal anaphylactic reactions. J Clin Pathol. 2000; 53: 273-6.
Pumphrey RSH, Davis S. Under-reporting of antibiotic
anaphylaxis may put patients at risk. Lancet. 1999 Apr 3;353(9159):1157-8.
Pumphrey RSH. Fatal posture in anaphylactic shock.
J Allergy Clin Immunol. 2003;112:451-2.
Pumphrey RS, Nicholls JM. Epinephrine-resistant
food anaphylaxis. Lancet. 2000; 355: 1099.
2. A clinic database with details of patients
with anaphylaxis, their reactions and the treatment given allows
epidemiological analysis of causes, treatments and outcomes. The
information held goes beyond any that will be incorporated in
the ICRS (electronic patient record). The Food Standards Agency
helped fund the development of this database. The findings from
this remain largely unpublished but we have published a report
on the early findings:
Pumphrey RS, Stanworth SJ. The clinical spectrum
of anaphylaxis in north-west England. Clin Exp Allergy. 1996;26:1364-70
3. In the course of these studies the author
has audited the accuracy of both death register and hospital discharge
ICD-coding for anaphylaxis and would urge the inquiry to use statistics
from such data with extreme caution. ICD coding works well for
common conditions but poorly for uncommon ones: anaphylaxis poses
particular problems because, for reasons described in detail in
the references listed above, it is unexpectedly difficult to diagnose
accurately.
PRIORITIES FOR
IMPROVING SERVICES
1. Deaths from allergic reactions to foods
have been almost exclusively limited to those who have not had
specialist advice about their allergies. The problem arises as
much from the unwillingness of General Practitioners to recognise
the importance of accurate diagnosis and appropriate management
advice in those with potentially life-threatening allergies an
from a shortage of clinics in which such patients can be assessed
and advised. GPs have many demands on their attention and allergies
are often seen more as a nuisance than a healthcare problem. Fatal
reactions occur as commonly in those with only minor previous
reactions as those who have had severe ones: appropriate advice
needs to be given to everyone with IgE-mediated food allergy.
Some way must be found to facilitate identification of, assessment
of and advice to these patients.
2. Acute allergic reactions to foods are
particularly common in children but fortunately not commonly life-threatening.
They do, however cause great concern and often receive inappropriate
management, exacerbating the anxiety, degrading quality of life
and compromising the education and social development of the child.
Most hospitals have a paediatrician with an interest in asthma
and basic knowledge about allergies—very few have a specialist
interest in helping children with allergies. Until more can be
trained, outreach clinics from specialist allergy centres can
make significant improvements in the management of children with
such allergies by informing the local paediatricians: an alternative
is for the DGH paediatricians to make regular visits to the allergy
centre and contribute to the centres paediatric allergy capacity.
RECOMMENDATIONS
(a) It will be helpful to continue collecting
detailed data on fatal anaphylaxis to inform recommendations for
better management to avoid further fatality in future. The findings
so far indicate that most anaphylactic deaths occurring outside
hospital are avoidable.
(b) The author is aware of the potential
if the ICRS for informing recommendations for improved healthcare
but would wish to point out that the data in the ICRS will never
be sufficiently detailed to optimally inform improvements in allergy
management. Further development of specialised databases such
as that partially funded by the Food Standards Agency in the author's
Immunology Unit will provide invaluable information.
(c) Resources are needed to develop specialist
centres that integrate paediatric and adult allergy services:
many severe allergies cause problems just at the boundary between
paediatric and adult care.
(d) Until such time as sufficient allergy
and paediatric allergy specialists have been recruited and trained,
the corpus of paediatric and adult immunologists with specialist
interest in allergy should be supported in their efforts to improve
services and in training specialist allergy nurses, whose remit
may extend into primary care, helping GPs to recognise patients
who would benefit by specialist assessment.
If required, the author would be happy to provide
oral evidence on the topic of life-threatening allergy within
the UK.
May 2004
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