ADDENDUM
THE NATIONAL ALLERGY STRATEGY GROUP (NASG)
TREAT ALLERGY SERIOUSLY
1. The NASG exists because patients and
professional organisations, and others, in the field of allergy
have agreed to work together because the provision of NHS allergy
services is extremely poor. There is a need to get allergy recognised
as a public health problem and raise the standards of allergy
care available through the NHS.
THE ISSUE
2. The context for this agreement is set
by:
(a) a current allergy epidemic: reliable
estimates are that
— an estimated 30% of the population have
an allergic disease (18 million people in the UK);
— 12 million people have active allergic
symptoms in any year;
— at least 3 million have allergic symptoms
sufficiently complex and severe to require help from a specialist
doctor;
— these are among the highest rates in
the world;
— prevalence is growing, making allergy
a particular problem for today's children and tomorrow's young
adults;
— allergy impacts on the lives of all groups
in the population, irrespective of socio-economic class, ethnic
origin or geography.
(b) poor access and quality of care available
through the NHS: a June 2003 report from the Royal College of
Physicians (see 3 below) found:
— poor understanding of allergy, a lack
of relevant training and low adherence to good clinical practice
within primary care, where major parts of a disease with such
widespread prevalence must ultimately be managed;
— inadequate information and comprehension
among NHS commissioners, an earlier attempt to forge a way forward
by identifying the disease as a subject for "specialised
commissioning" in order to focus knowledge and initial responsibility
about what should be done on a few selected individuals having
been made and failed;
— in the hospital sector, clinics providing
services for allergy patients mixed in with the management of
other conditions; and doctors, who are not allergists and who
have had little or no training in allergy—all in the absence
of specialised alternatives—helping to manage the epidemic;
— fully fledged and comprehensive, specialised
allergy services available only in six locations across the UK,
including Scotland, Wales and Northern Ireland (three of these
in London, with others in Southampton, Cambridge and Leicester)
with no services to the standards set in these centres west of
Bournemouth or north of Manchester.
3. In June 2003 a Royal College of Physicians
expert committee reported—Allergy: the Unmet Need (1). The
Royal College report, having documented the findings in 2 above,
proposed an agenda for change and improvement based on pump priming
investments to create a cohort of new, allergy specialist doctors.
The Royal College recommended that teams of four (two for adult
care and two for paediatric allergy) allergy consultants should
be trained and deployed to augment the existing services, giving
a national infrastructure of clinics, with each team serving populations
of 5-7 million people. These clinics would provide services for
the most complex allergy cases. They would also act as information,
training and support centres for both NHS commissioners and providers,
helping more widely disseminated allergy services to come into
existence within the NHS.
4. The Royal College calculated that the
cost to establish and train the new cohort of specialists would
eventually be £8 million a year, building up as each local
clinic became fully staffed to provide a comprehensive service.
Costs of at least 10 times that figure will be required to provide
the NHS with fully comprehensive hospital based allergy services
(2). No estimates exist of the investment necessary in primary
care to bring its services up to standard; but the Royal College
has recommended that the sustained development of primary care
cannot occur without the creation of a national infrastructure
of clinical allergy experts to ensure clinical leadership and
accountability.
5. The Department of Health has agreed that
improvement in NHS allergy care is needed. But has said that the
Royal College agenda for change is only one, and not necessarily
its preferred, way forward. Health Ministers wish to rely on an
approach based on local service commissioning—ignoring the
absence for major parts of the country of any service infrastructure
or basis of skill or information on which to base such a development.
The preferred policy also underplays the extent to which centrally
driven clinical priorities are currently overpowering all other
possibilities for health service improvement.
WHAT WE
ARE DOING
10. NASG members have decided that they
must act responsibly in this situation. There are large numbers
of people who need access to health care, which they are currently
denied. First exposure to allergy can be a very frightening experience.
Particularly when the allergic reaction could threaten death,
constant vigilance is required - often something which envelopes
the life experiences of the whole family. And the long term grind
of managing chronic allergy can too often sap the energy and enthusiasm
we all need to have a full life. We must balance the need for
hope, and the prospects for help and relief, with "telling
it as it is" about the poverty of the NHS in this area.
11. While acting responsibly, therefore,
the NASG has sought to get allergy treated seriously. It has:
(a) taken its case directly to Health Department
Ministers and senior officials. A Minister has agreed there is
a need for better allergy care and to discuss with his colleagues
and officials the publication of a possible "action programme
on allergy" which could inform local commissioners and service
providers of the need to find a way forward. While less than we
would hope for, we regard action by the Department in these areas
as a start—particularly if it involves NASG directly;
(b) opened ways for people with allergy
to give expression to their opinions and wishes. In this respect
we have initially encouraged allergy patients motivated to do
so to write to their Members of Parliament asking them to take
two concrete actions: to ask Health Ministers to pay attention
to the issue and to ask their local health services what they
are proposing to do about allergy care [attached example of the
patient card]. Patient opinions are currently reaching Parliamentary
representatives; and monitored responses so far have been mixed.
While some MPs have asked questions, as we asked, and others have
offered meetings—others have responded by formula. Further
Parliamentary and local campaigning is planned for later in the
year;
(c) begun work towards establishing an All
Party Parliamentary Group on Allergy.
12. NASG members are as follows:
— A core group comprises: the patients
organisations working in allergy (Allergy UK, the Anaphylaxis
Campaign and a representative of the Allergy Alliance) and the
professional allergy organisation in the UK—the British
Society for Allergy and Clinical Immunology.
— A wider group of supporters comprising:
training organisations and corporate organisations with interests
in allergy and the NHS Alliance.
REFERENCES
1. Allergy: the unmet need. A blueprint
for better patient care. Royal College of Physicians, London,
2003.
2. Allergy, in Consultant Physicians working
for patients: the duties, responsibilities and practice of physicians.
2nd edn. London; RCP, 2001:45-53
3 March 2004
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