Memorandum by The Anaphylaxis Campaign
INTRODUCTION AND
SUMMARY
The Anaphylaxis Campaign
1. The Anaphylaxis Campaign is a national
patient support organisation representing people who are at risk
from severe allergic reactions including the most extreme form,
anaphylaxis.
2. During anaphylaxis the whole body is
affected. Symptoms include swelling in the throat and mouth, severe
asthma, a dramatic fall in blood pressure and collapse and unconsciousness.
Extreme cases can be fatal. Causes include foods (notably peanuts,
tree nuts, milk, eggs, shellfish and fish); certain drugs; insect
stings; and natural rubber (latex).
3. The Anaphylaxis Campaign is a registered
charity (No 1085527) set up in 1994 to raise public awareness
of severe allergic conditions, inform and educate those affected,
and maintain dialogue with the Government, food industry and health
professionals. Main sources of income are membership subscriptions
and donations, fundraising by volunteers and corporate grants.
Our submission
4. Our submission will seek to demonstrate
that allergic disease impacts severely on the quality of life
of those affected and that currently the lack of NHS provision
has a serious effect on those living with the condition both in
terms of medical support and day-to-day living. Some of our evidence
is supported by the evidence of research, and we also draw on
13 years' experience of running a helpline, workshops, support
groups and member anecdotes. We see much anxiety and serious impairment
of quality of life.
5. Most of the facts, quotes and experiences
highlighted in our submissions feature people whose allergy trigger
is food. This is because the membership of the Anaphylaxis Campaign
(7,904 people in October 2006) is made up primarily of people
with food allergy problems. But we acknowledge that the other
causes of anaphylaxis are also important, resulting in a significant
impairment of quality of life.
6. Peanuts and tree nuts figure prominently
in our evidence because allergies to these foods are the ones
that most commonly cause fatal and life-threatening reactions.
A recent study showed that the incidence of peanut allergy has
tripled in the last decade and now affects one in 70 children
across the UK.
Allergy and intolerance: important differences
7. The function of the immune system is
to prevent harm to the body. It normally does this by fighting
off invaders but in people who are prone to allergy, the immune
system mistakenly registers harmless foods or substances as a
threat. A person with an allergy produces allergic antibodies
to a particular food or substance (known as an allergen). Contact
with the allergen causes chemicals including histamine to be released
from cells in the blood and tissues. These act on different parts
of the body to cause symptoms such as swelling, skin rash, streaming
eyes and nose, vomiting, breathing difficulties or asthma. For
a few people, these symptoms may be extreme and affect the whole
body (anaphylaxis).
8. Food intolerance is different. It is
not triggered by the immune system, it cannot be diagnosed by
standard allergy testing and must be treated different to allergy.
Unfortunately many people who experience symptoms that seem to
be connected to food—such as nausea, sickness, headaches,
digestive difficulties or sluggishness—mistake this for
allergy, when in fact it may be a form of intolerance. Furthermore,
there are many people who believe themselves to be allergic or
intolerant who in fact have some other underlying medical problem.
All of these people—whether genuinely allergic, intolerant,
or affected by some other disease—find it extremely difficult
to access accurate information and obtain expert attention because
of the lack of allergy services. This problem needs to be addressed
urgently.
Contents
9. Because our work covers a variety of
aspects of living with severe allergy, we have included evidence
on: the following subjects:
— Food labelling and eating out.
— Self-treatment of allergy and the
dangers of alternative therapies.
— Impact of allergy and quality of
life.
— Conclusion and future work.
REFERENCES [not printed]
FOOD LABELLING
AND EATING
OUT
The nature of the problem
1. This paper will demonstrate that people
with severe food allergy face a genuine risk, not a hypothetical
one, and that urgent steps need to be taken to address this. People
seeking to avoid a particular food, or foods, encounter numerous
barriers. Despite improvements provided by new European legislation,
food labelling is frequently inconsistent and confusing. The explosion
in "may contain" labelling—adopted by food companies
to signal the small possibility of allergen traces—fuels
this confusion.
2. Eating out poses an even higher risk
because of the complexities of food production in catering establishments,
lack of knowledge among catering staff, food enforcement officers
and allergic consumers alike, and the fact that allergic consumers
do not have the benefit of an ingredient list to guide them.
Defensive labelling
3. The Anaphylaxis Campaign has overwhelming
evidence that allergic consumers have become increasingly angry
and frustrated with restriction in their choice of foods, caused
by the escalation in defensive labelling (eg "may contain
nuts"). Food companies use this method of labelling to signify
that a food product may have been subject to cross-contamination
in the food production chain. This is not regulated by law, and
there is little consistency across the industry in how warnings
are presented on food packets. The confusion consumers face puts
them at serious risk. Almost all of the young people attending
Anaphylaxis Campaign educational workshops for allergic teenagers
say that they disregard "may contain" warnings because
they believe food companies are simply "covering their backs"
and that the hazard is not genuine. This is dangerous behaviour.
Allergen testing laboratories have demonstrated that allergen
contamination is a real risk.
4. A "shopping survey" undertaken
by the Anaphylaxis Campaign for the Food Standards Agency found
that "may contain nuts" warnings appeared on a significant
proportion of foods that do not have nuts as ingredients. They
appeared on 69 per cent of cereals, 58 per cent of biscuits and
56 per cent of confectionery. The way these warnings were displayed
meant that often shoppers could not find or read them easily.
Warnings were found some distance from the ingredient list, in
tiny, unreadable type, in coloured type on coloured paper and
sometimes under a flap.
5. A membership survey undertaken by the
Campaign drew many hostile comments, of which this one is typical:
"I had always thought that food labelling was there to help
and protect the consumer. But now I wonder if it really exists
to protect the food industry."
6. The Food Standards Agency has gone some
way to address consumer concerns with its voluntary guidance produced
in 2006. This is useful guidance and may help to bring about some
consistency and better quality of "may contain" labelling.
7. However, it is insufficient on its own.
Thanks to a grant from the Agency, the Anaphylaxis Campaign is
developing the UK's first certification programme to enable food
companies to ensure optimum allergen control. This is currently
the subject of a wide consultation exercise and the Anaphylaxis
Campaign plans to launch the programme in 2007.
8. This certification programme invites
the participation of the food industry on a voluntary basis. The
question remains as to whether "may contain" labelling
should be regulated by law. This requires much serious debate.
Legislation takes many years to produce and action is needed now.
Many food companies, particularly but not exclusively the larger
ones, already follow good practice and we must wait to see whether
the measures described here have any effect.
Allergy and catering establishments
9. The risks increase significantly when
people eat out, largely because consumers do not have the benefit
of comprehensive food labelling and must often rely on verbal
assurances of catering staff. Every year, a minimum of six to
seven deaths from food-induced anaphylaxis are reported. The true
figure is almost certainly higher because of misdiagnosis or misreporting.
Reports from the US and the UK confirm that the greatest risk
for allergic consumers comes from complex foods prepared by restaurants
and other catering establishments.
10. The following fatalities are just a
small proportion taken from the Anaphylaxis Campaign's register
of allergy-related deaths.
11. Example one: A young Lancashire woman
died after eating a curry that contained peanut. She had asked
for a peanut-free meal. The environmental health officer investigating
the case concluded that she died because of "a communication
problem."
12. Example two: A promising young athlete,
who was allergic to nuts, died after eating a Coronation chicken
sandwich which, unknown to him, contained nuts as an intended
ingredient.
13. Example three: A Liverpool girl with
a nut allergy collapsed and died during a formal dinner at university
after she ate a dessert that, unknown to her, contained nuts as
an intended ingredient.
14. Studies of allergy-related deaths have
been undertaken thanks to an association between the Anaphylaxis
Campaign and Dr Richard Pumphrey, of the North West Region Immunology
Service. Our register of fatalities draws clear conclusions about
the circumstances under which people with food allergies usually
die. The intention is to learn lessons and save lives.
15. Three-quarters of the reported deaths
occurred when food was bought in catering establishments, such
as restaurants, hotels and takeaways.
16. In some cases where the victim had asked
for a meal without nuts, the person serving (and in several cases
even the caterer) had not been aware that the food contained nuts.
In other cases, the request for nut-free food had either been
misunderstood or forgotten.
17. Most cases involved the allergen being
present as an intended ingredient, but unexpected or unrecognised
by the food business, the consumer, or both.
18. In 22 cases out of 54 that were studied
in some depth and published in the medical literature, the patient
had never been prescribed emergency adrenaline. In some cases,
adrenaline had been prescribed but was not being carried on the
day of the fatal reaction. What was lacking here was patient education.
19. Despite a growing awareness of food
allergy, deaths are still occurring. Important lessons are not
being learned. The Anaphylaxis Campaign is aware of a much larger
number of near-fatal reactions, where the victim was resuscitated
thanks to prompt medical treatment. These cases do not make headlines.
The Royal College of Physicians reported that hospital admissions
due to anaphylaxis increased seven-fold in a decade.
20. In June 1999, before the Food Standards
Agency was established, Mr Edward Davey, MP for Kingston and Surbiton,
responded to the death of the young athlete Ross Baillie by telling
the House of Commons: "When a fit, gifted athlete like him
dies because of a few bites of a chicken sandwich, it is surely
our duty to ask whether or not his death or deaths like it could
have been avoided. We need to ask whether or not actions this
house has the power to take could help prevent such tragedies
in the future."
21. In response, Food Safety Minister Mr
Jeff Rooker said that one answer might be "an effective code
of practice which will raise awareness, so that the industry takes
responsibility." He pledged to "take this issue forward"
to see whether a code of practice would be "beneficial".
22. The Food Standards Agency has recently
made some progress towards addressing the needs of food-allergic
consumers who wish to eat out. Draft guidance for the catering
industry on management of allergens and communication of information
is out for consultation. This is welcome, but it is voluntary
guidance only and will only partially address the problem of allergy
risks in catering situations.
23. We believe that the long-term solution
to addressing the problem of food allergy in the catering sector
lies in compulsory training programmes in allergy for food enforcement
officers, particularly EHOs involved in the assessment of food
safety management systems. They could then ensure better compliance
and a more consistent approach to food allergen management by
food businesses. In our view, this should be the Agency's main
objective.
24. Environmental health officers are the
guardians of food safety in the UK. Officers are in regular contact
with all catering establishments, seeking to ensure the safety
of the food supplied. No other agency is involved in the regular
assessment of food safety management systems. In many instances,
particularly in the smaller businesses where self-regulation is
not strong, the advice of the officer is taken as the law and
work is carried out at their request so it is vitally important
that these officers view allergen control as an integral part
of the food safety inspection regime and that they ask the correct
questions. Many officers may agree that allergen control is important
but may not consider them during inspections.
25. A survey carried out among environmental
health officers involved in food safety enforcement work in Northern
Ireland in 2000 revealed that less than 20 per cent (6/37) of
the officers considered serious food allergens (nuts/peanuts)
when carrying out assessment of the premises' food safety management
system. Of the 31 who did not, 26 considered that they lacked
knowledge and training in the subject of food allergen control.
In 2002 another survey revealed that little had changed and 100
per cent (35/35) of the officers surveyed felt that they needed
training in the area of food allergen control. Several officers
expressed the view that training should integrate allergy into
the HACCP food safety management system, perhaps because food
safety management is the bedrock of the inspection process.
26. We conclude that training in food allergy
must become a priority for local authority food enforcement officers.
They must be given formal accredited allergen control training,
and all guidance on food standards and safety/hygiene must reflect
the need to consider allergens as part of the formal inspection
process.
REFERENCES [not printed]
Allergy in schools
1. As stated in our introduction and summary,
the incidence of peanut allergy has tripled in the last decade
and now affects one in 70 children across the UK. It is estimated
that 250,000 children are allergic to peanuts, tree nuts or both.
Allergies to other foods (such as kiwi fruit) also appear to be
on the increase.
2. Given this relatively high prevalence,
it is probable that every school has at least one pupil who is
severely food-allergic and it is unsurprising that there are often
tensions in schools. Parents may make unrealistic demands (such
as a total ban on the allergenic food), schools may be driven
by fear to respond unhelpfully, and the result in all cases is
that the child suffers. This is certainly the experience of the
Anaphylaxis Campaign helpline staff.
3. The Anaphylaxis Campaign believes strongly
that the risks faced by allergic schoolchildren can be managed
and minimised. It is our experience that ignorance lies at the
root of schools' inability to cope. What they need is help, information,
support and training.
4. A questionnaire study within the Severn
NHS area of south west England found that schools are not sufficiently
well-informed about management of acute allergic reactions. Forty-four
per cent of the schools with an allergic pupil either did not
have staff trained to administer medication or declined to respond
to the questionnaire. Less than half of the schools with nut-allergic
children said they gave information to all the teachers about
this medical condition.
5. An audit of schools in the Nottingham
area identified inconsistency in knowledge and awareness about
treatment of allergic children. Gaps in training for both school
nurses and school staff were identified, particularly for midday
supervisors.
6. A study published in the British Medical
Journal said that patients and GPs lack knowledge on when and
how to use adrenaline auto-injectors. We conclude that if GPs
lack knowledge, it should come as no surprise that there is ignorance
in other sections of the medical community.
7. A questionnaire survey of 14 school nurses
in the West Midlands, undertaken by the Anaphylaxis Campaign,
showed that all the nurses surveyed would undertake training
by the Campaign, if it was available, and 8/14 acknowledged that
they required additional help and information (eg to ensure their
knowledge is up to date). The West Midlands is an area where allergy
awareness in schools is already relatively high, indicating that
training is probably more urgent in other areas.
8. A 2006 study showed that most Scottish
schools now have at least one child at risk of developing anaphylaxis
within the school setting, and although most of these schools
have trained staff with access to emergency medication and personalised
care plans for these children, they continue to express concern
about their ability to respond effectively in an emergency situation.
9. Some progress has been made. The Department
for Education and Skills acknowledges that anaphylaxis presents
a significant challenge for schools and produced a useful guidance
document for schools. In 2004 the Anaphylaxis Campaign received
grants from the Peanut Foundation and the American Peanut Council
to set up a website specifically aimed at providing allergy-related
information to schools. This website received 4,029 visits during
the first month it was launched. The number of visits varies month
by month between just under 2,000 to just over 4,000 and these
levels are being maintained.
10. However, schools have needs that cannot
be met by a website. School staff now have access to information
but they also need active, personal instruction on how to recognise
symptoms, how to treat them with injectable adrenaline and how
to manage allergies on a day-to-day basis. In many schools, the
key people who ensure that school staff are properly trained are
the school nurses. They too need active, personal instruction.
At present, the knowledge they possess varies in content and quality
around the country. There is inconsistency and, in some cases,
a dangerous ignorance of the facts.
11. The Anaphylaxis Campaign believes that
the training of school nurses should fall under the Government's
remit, but in the absence of any Government training, the Campaign
is now planning to set up a national training programme of its
own. This was piloted in five areas of the UK in early 2006, and
will be rolled out nationally in 2007-08.
12. The national roll-out depends on funding
becoming available and therefore its success is by no means assured.
Patient organisations like the Anaphylaxis Campaign live a precarious
existence; vital educational and training programmes can only
succeed with Government and/or corporate support.
13. Some corporate sponsors for this schools
training programme have been identified, but others are urgently
needed. Without high-quality training, of the kind that is proposed,
children will continue to be at risk.
14. These risks may increase as a result
of Government recommendations that form part of its "Transforming
School Food" initiative. Whilst the Anaphylaxis Campaign
supports the general principles of healthy diets for children,
we are concerned with the Government's comments that snacks sold
in school vending machines and tuck shops may include nuts and
seeds.
15. This recommendation raises the possibility
that peanuts, tree nuts and seeds will become commonly eaten snacks
in many schools. It raises the further possibility that allergic
reactions will increase.
16. Primarily this is a cross-contamination
issue. Proteins from nuts are notoriously difficult to clean and
tend to become transferred easily from hands to surfaces such
as tables, chairs and computer keyboards. There is a real risk
that these allergenic proteins will be picked up on the hands
of allergic children. "Casual contact" reactions caused
by touch are rarely thought to be life-threatening, but they can
lead to moderately severe symptoms requiring treatment—particularly
if the child touches his or her mouth.
17. Evidence for this came in a paper published
by a German medical team. They reported the case of a 32-year-old
man with peanut allergy who suffered a serious allergic reaction
during a card game. It transpired that his friends had been eating
peanuts. Although they kept them well out of his way, peanut protein
from their fingers found its way on to the playing cards. As the
cards often stuck together, the player with the allergy licked
his thumb to separate them. After one hour he felt swelling of
lips and tongue as well as shortness of breath. He received emergency
medical treatment.
18. The Anaphylaxis Campaign fears that
if schools follow the Government recommendations in this respect,
we will see an increase in allergic reactions in schools. At the
very least, it will cause great anxiety for the families of allergic
children, many of whom are unclear about the actual risks caused
by "casual contact" with food allergens.
19. The Anaphylaxis Campaign has launched
a series of monitoring exercises that will seek to find out whether
the prevalence of nuts is actually increasing in schools and whether
this is causing problems.
20. We feel the House of Lords Select Committee
should be aware of this issue because it demonstrates that:
— The Government's "Transforming
School Food" initiative appears to have taken little account
of food allergies.
— Research is needed to determine actual
risk levels that people with food allergies face. There is still
much debate about the degree of risk posed by "casual contact"
but it causes extreme distress among the families affected.
REFERENCES [not printed]
Self-treatment of allergy and the dangers of alternative
therapies
1. When avoidance fails, as it does for
almost everyone with food allergy, the symptoms may be mild or
they may be life-threatening. Mild symptoms are treated with oral
antihistamines, obtained on prescription or over the counter.
Serious symptoms constitute a medical emergency and require an
immediate injection of adrenaline. Allergy doctors recommend that
prescribed adrenaline treatment kits (EpiPen or Anapen) are available
for those at risk.
2. Unfortunately there is a lack of consensus
in the medical community over who should be prescribed adrenaline,
how many treatment kits should be available, and at what stage
of a reaction adrenaline should be administered.
3. Macdougall et al suggested that for children,
the risk of a fatal reaction is exceedingly small and concluded
that adrenaline injectors are over-prescribed.
4. Many other experts argue that carrying
adrenaline saves lives. Hourihane argues that adrenaline provides
an assurance to patients, parents and child carers alike that
they are not powerless; they have a means to protect themselves.
5. This lack of consensus leaves general
practitioners and others in primary care in a quandary: they seek
guidance from experts but find the experts disagreeing among themselves.
6. The Drug and Therapeutics Bulletin provided
sensible guidelines for those caring for severely allergic children
but acknowledged there was a lack of reliable data on which to
base decisions.
7. The Anaphylaxis Campaign advocates the
setting up of national consensus guidelines for the management
of severe allergy and the prescribing and administration of adrenaline.
8. This current lack of consensus guidelines
leads to confusion among medical professionals patients alike.
At the root of the problem is the poor quality of Britain's allergy
services. Because reliable information from the NHS is so scarce,
patients turn to other sources. Some of these are unreliable and
inaccurate.
9. People may rely on information they see
in the media, which is frequently misleading and sometimes dangerous.
Such headlines as "60,000 kids at risk from peanuts"
(Daily Mirror) are a serious overstatement in terms of the actual
numbers of children whose lives are threatened. The internet may
also be a tempting source of information but many websites provide
information that is either inaccurate, confusing, out of date,
unnecessarily alarming, written in terms lay people cannot understand,
or promoting questionable allergy tests and treatments. There
is also a temptation for patients to consult alternative practitioners,
with the inevitable risk of misdiagnosis and inappropriate treatment.
10. A 2006 study found that a wide range
of allergy tests are available from the internet, with about one-third
being reputable tests but the rest of unproven value. The authors
say that few websites offering these tests acknowledge the need
for careful interpretation.
11. The Anaphylaxis Campaign helpline staff
are aware that people with allergies will frequently seek and
locate sources of help and information that may well be of dubious
value. Often they have waited many months for an NHS referral
and are desperate for answers. The types of testing considered
include Vega, kinesiology, and hair and blood testing conducted
by mail. Some of these testing methods are promoted in High Street
health food shops. In addition, "cures" are offered
by many practitioners including Chinese herbalists, oriental "massage"
practitioners and others. Many of these methods have no proven
value at this time.
12. During one Anaphylaxis Campaign support
group in South London, a young woman with severe food allergy
was advocating the use of "freedom technique", a therapy
whereby the patient, at the onset of a reaction, taps their index
finger under the nose and above the top lip. She claimed this
stopped an anaphylactic shock occurring and that she does it before
taking adrenaline. The meeting was made up of (in our opinion)
intelligent middle class women, most of whom were seeing a good
allergy specialist in London, yet at least 50 per cent wanted
more info and appeared to be considering this as a technique to
try.
13. The situation we have described will
continue. To summarise: There is a great need for an improvement
in allergy services under the NHS; and there is a great need for
national consensus guidelines for the management of severe allergy
and the prescribing and administration of adrenaline.
REFERENCES [not printed]
IMPACT OF
ALLERGY AND
QUALITY OF
LIFE
1. There is no cure for food allergy. People
at risk must adopt avoidance as the first line of defence. They
must commit themselves to learning management strategies, reading
food labels scrupulously every time they shop and taking strict
precautionary measures when eating out. Unfortunately these defensive
measures frequently fail. Many of those affected describe food
allergy as "a sword of Damocles" and perceive mealtimes
to be akin to "playing Russian roulette".
2. The risk they face is real, not theoretical.
The following example is one of thousands reported to the Anaphylaxis
Campaign during its 13-year history: A teenage boy ate two mouthfuls
of apple pie bought in a supermarket. He suffered anaphylaxis
requiring emergency medical treatment. The pie contained 0.006
per cent milk protein, quite legally undeclared (at that time).
3. Incidents like that are relatively common
and lead to extreme anxiety and poor quality of life among the
families affected. The Anaphylaxis Campaign helpline received
6,269 calls during 2005. Many of the callers showed themselves
to be extremely fearful because of the unpredictable nature of
severe allergy. Many of their fears are unfounded and result from
common myths that give a disproportionate impression of risk (a
process that is fuelled by media scaremongering). One of the common
myths is that a severely allergic child is unlikely to reach adulthood.
4. The way to dispel those myths is better
patient education and more research that clearly puts risks into
perspective, as well as research that offers patients better treatments.
5. The anxiety linked with peanut allergy
was quantified by a research study showing that children with
the condition are more anxious than children with insulin-dependent
diabetes mellitus. Children from both groups completed "quality
of life" questionnaires and recorded with a camera how their
condition affected their lives over a 24-hour period. The results
were then analysed.
6. In comparing the two groups, the researchers
found that children with peanut allergy were more afraid of potential
hazards, more anxious about eating and felt more restricted regarding
physical activities. The researchers believe this anxiety may
stem from the feeling that they have little control over their
lives. The team's report said this high state of anxiety among
allergic children was unjustified and did not have to be permanent.
With appropriate education about allergy management, children
could be helped to develop self-confidence and a positive attitude.
7. In 2005 and early 2006 the Anaphylaxis
Campaign undertook two surveys of its own members.
8. The first survey was conducted during
November and December 2005. All 7,695 members were sent a letter
asking them to write about their experiences of living with severe
allergy. Of the 7,695 who were mailed, 1,021 replied—making
a 13 per cent return. This is a very high return for public surveys.
9. One parent who responded told of a long
wait to have her son properly diagnosed "When William had
a severe reaction to peanuts we had to wait nine months before
we could have him allergy tested." Others were happy with
the service but worried that the medical profession was over-stretched:
"Staff fantastic, from GP to specialist, but definitely a
feeling that they felt overwhelmed."
10. A great many of those who responded
said they were disillusioned by the NHS: "We have had to
fight for medical assistance and still feel unsupported."
Some said they had been forced to go private: "The waiting
time for a hospital appointment for testing was at least six months.
We paid to go privately." Many more were grateful that they
managed to see a specialist but were concerned at the distance
they had to travel to take up these appointments: "We recently
went to our GP in Maidenhead who stated we would have to go to
Southampton for any specialist treatment. This will be a round
trip of 150 miles plus."
11. One respondent recounted a dangerous
piece of advice given by her GP after her son presented with allergic
symptoms: "The GP said he had no training in allergies and
a slow reintroduction of nut traces may be the way to go."
Another felt let down by the GP in the day-to-day management of
allergy: "We have been offered very little help or information
about his allergy from our GP or local hospital. We have gained
nearly all our knowledge of his allergy from the Anaphylaxis Campaign."
Another parent said: "The GPs and nurses at our practice
had no advice for us, other than do not give her peanuts."
12. Experiences such as those quoted above
are among the causes of extreme anxiety and poor quality of life
experienced by people affected by anaphylaxis. Responding to our
survey, one mother said her anxiety is so great she only manages
it by having her grown up allergic son call her daily. Another
spoke about her disabled son and stated "My son aged 10 has
severe disabilities but the thing that most prevents us from leading
an ordinary life is his severe nut allergy."
13. A second, more formal survey took place
in January 2006 to provide quantitative information. This time
the membership was asked to complete an on-line questionnaire
and this brought responses from a total of 1,117 members (patients
or the carers of patients). This amounted to 14 per cent of the
membership. The objective was to find out about the experiences
of allergy services through the NHS as well as how living with
allergy affects the quality of life.
14. Quality of life is a huge issue as our
findings show. The people who responded have the benefit of the
support and information of the Anaphylaxis Campaign, yet even
they are profoundly affected.
15. Full results of both surveys are presented
with the hard copies of this submission.
16. To summarise: The Anaphylaxis Campaign
wishes to see: Better patient education for people at risk of
severe allergies in order to improve their quality of life; more
research that clearly puts risks into perspective; new and better
forms of diagnosis and treatment.
REFERENCE [not printed]
CONCLUSIONS AND
FUTURE WORK
Government policies to date
1. We consider that the measures proposed
in the Department of Health's Review of Services for Allergy will
fail to address a serious unmet need. It appears that the Department
of Health has scant regard for the whole discipline of allergy
as evidenced by the lack of any emphatic recommendations about
the development of allergy services, despite all the evidence
presented. We support the measures detailed in the Royal College
of Physicians Report and believe that these are the answer to
the significant problem of poor allergy services.
2. We call on the Department of Health to
reconsider its recommendations in its recent review of allergy
services in light of those made by the House of Commons Select
Committee for Health in November 2004. They recommended 40 new
specialist posts in the field of allergy which would greatly reduce
the burden currently placed on the 27 whole time equivalent specialists
and eight trainees who are working in the field at present. Once
trained, these doctors will join the allergists currently at work
in the NHS to become the core of a modern allergy service which
can be available to patients across the whole country when they
need it. Subsequently the more trained specialists there are the
more trainees can be recruited, meaning a constant supply to replace
those who leave the discipline for whatever reason.
3. On the other hand, the Food Standards
Agency has made great progress towards addressing the needs of
food-allergic consumers. We have worked with the Agency's allergy
branch since the Agency's inception and are impressed with the
strong grasp they have of the issues. Indeed, there have been
many useful measures taken by the Agency, including guidance documents
for caterers, food manufacturers, retailers and the allergic public,
and the funding of individual projects undertaken by the Anaphylaxis
Campaign. Furthermore, the Agency's research programme is funding
some vital work, and the Anaphylaxis Campaign hopes fervently
that this funding will continue. Ultimately it is in research
that the hopes of people with allergies lie. We outline in Point
7 below some the areas where, in our opinion, progress is needed.
4. Despite much progress, people are still
dying of allergies. Further work in the catering sector—where
most of the serious reactions occur—is vital. What is needed
is a full national training programme for local authority enforcement
officers. This is lacking at present.
5. On the subject of schools, we feel the
House of Lords Select Committee should note that the Government's
"Transforming School Food" initiative appears to have
taken little account of food allergies.
6. There is a great need for national consensus
guidelines for the management of severe allergy and the prescribing
and administration of adrenaline.
The need for future research
7. The Anaphylaxis Campaign would like to
propose a number of areas for research. These have been compiled
during discussions involving experienced staff members of the
Anaphylaxis Campaign—"front line" people with
regular direct contact with people with allergies.
— "May contain" labelling:
How often do reactions occur through people eating food labelled
"may contain X"? What symptoms do they experience? What
foods are they reacting to?
— Food production: What are the threshold
levels for individual food allergens (the amount of allergen below
which a reaction will not occur)? What food production procedures
and cleaning methods would be adequate to bring food to beneath
this safety line?
— Allergy care: Which patients should
be prescribed adrenaline auto-injectors and which patients should
be denied them? How many auto-injectors should be available to
severely allergic patients at any one time?
— Severity of reactions: Can it be
determined which patients are at risk of life-threatening reactions
and those that are likely to experience only mild ones? What percentage
of people diagnosed with food allergy react to casual contact
with an allergen (smell or touch)? What are the implications with
regard to airline travel or being in another enclosed space such
as a public house or club?
— Psychological effects: Are allergic
children as anxious about coping with allergy as their parents?
— Development of allergy: Can sensitisation
be prevented through pre-natal, weaning or early life interventions.
How much does lifestyle increase the chance of becoming allergic?
Why do people develop allergies later in life? Why does an apparently
mild allergy become more serious during a person's teens?
— Emerging allergens: Can the risks
posed by new allergens, such as lupin flour, be quantified so
that appropriate advice may be given to those who may be at risk?
Conclusion
8. Even with a correct diagnosis, those
living with severe allergy face a huge battle every day and their
quality of life and that of their extended family is greatly affected.
The shortage of information from the NHS, means that for many
little is known about a potentially life threatening condition.
The Anaphylaxis Campaign has 7,904 members who benefit from a
newsletter three times a year and regular bulletins and updates
but the estimated figure for those with allergy severe enough
to require specialist care is up to three million. This means
there is a huge shortfall of people who are not aware of all the
facts and could be living without a suitable self-management plan.
Quality of life is also compromised by the feeling of being out
of control. The allergic population is reliant on the food industry
to label correctly and the medical profession to diagnose and
treat effectively. Both areas are flawed due to lack of services,
education and knowledge.
9. We welcome the House of Lords Select
Committee on Science and Technology's investigation and are available
to offer further information on request.
REFERENCES [not printed]
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