Memorandum by Allergy UK
INTRODUCTION
1. Allergy UK is the operational name of
The British Allergy Foundation a charity formed in 1991 to provide
information, advice and support to people with all types of allergy/intolerances
and their carers.
2. An extensive database of in excess of
80,000 people who have sought help from our charity are registered
on our database. In addition to this we also hold a large database
of healthcare professionals who have used our services to provide
information to their patients and have come to us for educational
materials for their own use.
3. We have a dedicated helpline and a growing
on-line advisory service and the number of people using the helpline
services have increased in the year since March 2005 to April
2006 by 5.37 per cent with 19,554 being received.
4. Helpline callers are supported by our
network of "Friends"—volunteers who provide a
befriending service which offers practical non medical advice
and a listening ear to sufferers and families under strain due
to the impact of allergy on their lives.
5. Allergy UK recognising the lack of knowledge
also provides education and training to healthcare professionals
via Masterclasses and an increasingly popular on-line e-learning
European Diploma in Allergy accredited by the University of Greenwich.
6. Allergy UK works in all areas that impact
on the lives of allergy sufferers, schools, employment, voluntary
groups. We work particularly with manufacturers of products that
aim to improve allergen removal/reduction and we are gradually
moving into environmental areas such as house building and air
quality in the indoor environment of both the home and office.
THE PROBLEM
7. For the patient the major problem is
the lack of knowledge at primary care level. GPs do not recognise
allergic symptoms when presented with them due to a lack of training
in allergy. This lack of knowledge at best causes distress, at
worse can be life threatening, particularly when the GP refuses
to refer to an allergy specialist even when the symptoms are clearly
beyond being dealt with at primary care level.
8. I list below a few examples of the numerous
anecdotal reports we hold of the difficulties experienced by patients:
— Mother with young son skin bleeding
with eczema—told to just continue with steroid creams, no
point in allergy testing as it is a waste of time and money.
— 73 year old ate something at son's
house had an anaphylactic shock. Emergency admission to hospital
where she suffered three heart attacks.
— Hospital A&E wonderful and did
everything possible advised referral to allergy specialist. GP
refused referral but admitted that another attack would be possible
as it was unclear what was the original trigger.
— GP told Mother her five year old
son was too young for allergy testing but he would like to see
the reaction when he was suffering his next anaphylactic shock.
— Lady 50s taken to hospital after
having difficulty in breathing while out walking—given adrenaline
by hospital. GP won't refer as thinks that it isn't possible to
get allergies in later life.
— Child age seven skin sore, eyes covered
in eczema and very puffy. Referral refused by GP who says that
nothing can be done for the child.
— Child aged four diagnosed as being
allergic to cows milk. GP advised that the child could drink goats
milk instead—result child died.
9. If there is recognition that the symptoms
presented could be due to an allergic reaction the GP is frequently
unsure of where to refer the patient and frequently will advise
the patient to contact Allergy UK for advice on an appropriate
clinic.
10. There is a lack of recognition, due
to minimal training, within primary care that allergy is a multi-organ
disease and GPs will refer a suspected allergic person often to
two organ based specialists rather than one referral to an allergy
specialist. Very typically this will be a dermatologist and respiratory
or Ear Nose and Throat specialist. The result of this double referral
often results in additional costs to the NHS and very importantly
patients being treated inappropriately with the potential of using
more pharmaceutical interventions than might otherwise be needed.
11. The lack of training in allergy and
therefore the lack of recognition of patients presenting with
allergic disease to the GP means that the reason for a patients
visit is usually incorrectly recorded. The lack of correct data
means that the problem and level of allergic disease is not properly
recognised and this together with the lack of training is the
greatest barrier to filling the gaps in establishing the overall
burden of the disease.
12. The lack of recognition of allergy also
impacts seriously on research into allergic disease. Without properly
diagnosed NHS patients there can be no basic research, clinical
trials or, importantly, research on NHS service delivery for allergy.
TREATMENT AND
MANAGEMENT
13. For people suffering from allergy the
recently reported advances in research into allergic disease have
offered a great hope for the future. However the reality of the
situation is very quickly realised by sufferers as of little benefit
unless:
— we have trained GPs able to diagnose
allergy—if the problem is not recognised how will patients
access any new treatments; and
— we have allergy specialists able
to deliver the new treatments and train Primary Care colleagues
in supporting the allergic patients undergoing treatment.
GOVERNMENT POLICIES
14. Government policy has consistently pushed
back the possibility of any progress in dealing with the rise
in allergy.
15. The refusal to accept the findings of
the House of Commons Health Select Committee and, following the
Department of Health review released in July this year, to place
the delivery of services for allergy into local responsibility
will result in an escalating problem for people with allergy.
16. Allergy UK carried out a survey of PCTs
in 2005 regarding their plans for allergy, this clearly showed
that PCTs are largely unaware of allergy and generally have no
finances available for the service and no plans to improve the
situation. We have recently carried out a similar survey which
will be released in November 2006 and there is nothing within
the new figures which provides any hope for the future in this
area.
17. We do not believe that sufficient attention
is paid to the quality of the indoor environment in terms of housing
policy and regulations. The rise in allergies, particularly those
associated with indoor allergens call for greater consideration
to be given to the area of building both of homes and offices.
18. The difficulties for those suffering
from food allergies are considerable. It is appreciated that there
are severe difficulties for the food industry but unfortunately
the "may contain" labelling is now so widely used that
it has resulted in increased difficulty in achieving a balanced
diet for some people with severe allergies and in some instances
sufferers becoming somewhat blasé about the warning. The
Anaphylaxis Campaign have recently launched an initiative, funded
by the Food Standards Agency, which hopefully will assist in this
very difficult area.
PATIENT AND
CONSUMER ISSUES
19. Allergies impact heavily on the quality
of life of patients and their families. In a survey of 6,000 sufferers
conducted by Allergy UK for its "Stolen Lives" series
over 62 per cent of those questioned stated that allergy significantly
affected all aspects of their lives. The difficulties in maintaining
the ability to work is very much highlighted by all Sufferers
which in turn has a financial impact on the family. Allergy causing
poor sleeping patterns results in lack of concentration and energy.
This in turn leads to poor levels in the school room with examination
results reflecting this. In the work place sufferers are aware
of not operating to the best of their ability. Simple things with
the family such as outdoor activities, picnics, sports, taking
part in social activities are all highlighted as extremely difficult
if not impossible for sufferers.
20. People with allergy rely heavily on
the patients organisations for information, services and support.
The charities are trusted by the public and we in turn fiercely
guard our independence and integrity in delivering our services.
21. The UK is fortunate to have excellent
organisations who are dedicated to serving allergy sufferers but
all of the services provided by the patients organisations are
delivered from charitable funds which are hard won. The expertise
within the patients organisations is considerable and with reliable
and consistent funding this expertise could be maximised to extend
the range and quality of information, advice and support to sufferers
and those undiagnosed.
22. As has been highlighted the lack of
knowledge in primary care, the inability to obtain proper diagnosis
is driving an increasing number of people into undertaking alternative
testing. One highly respected paediatrician from a London Hospital
stated this week that in the region of 70 per cent of the patients
he saw had been told by their GP to go for alternative testing.
23. All of this makes it increasingly urgent
that the lack of regulations governing private clinics, diagnostic
testing and therapeutic services should be addressed. It is at
the present time totally unsatisfactory. Currently there is nothing
to guide the consumer on whether the test, clinic or service has
been clinically proven in any way. There is nothing to show that
the laboratory that is carrying out the testing holds any form
of validation.
24. The impact of these alternative companies
is considerable on the health and finances of those using them
and I give below three examples from our database to demonstrate
this:
— Mrs S age 32 suffering IBS, Migraine
and skin rashes. Visited local health shop for allergy testing.
Told allergic to 116 foods and to remove them from her diet.
Cost £40
— Mr J age 28 suffering from sneezing,
runny nose, cough. Visited iridologist. Told suffering from wheat
and dairy allergy And to remove them from diet.
Cost £70
— Miss W 58 suffering from headaches,
migraine, joint pains, IBS, runny nose and wheezing. Visited private
clinic for consultation was admitted and given treatment of what
were described as "allergy shots and vitamins" Stay
in clinic three weeks, three follow up consultations.
Cost £28,000
25. Miss W lost her life savings in seeking
a diagnosis and treatment for her problems. This lady and many
others have been severely let down by the lack of service for
people like her and the lack of guidance on alternative testing
and treatment.
26. The anecdotal evidence that we have gathered
highlights the seriousness of the situation which will only get
worse unless something is done about the lack of allergy services
within the NHS.
GENERAL
27. Allergy UK are extremely concerned for
the future given that a sizeable number of the few allergy specialists
there are in this country are due to retire within the next five
years.
28. Unless funding is directed into allergy
services allowing education and training to be addressed particularly
at Primary Care, the excellent research which is currently taking
place will never translate into actual treatment for the majority
of allergy sufferers in the UK.
7 October 2006
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