Supplementary evidence by the Anaphylaxis
campaign (AL 31A)
NINE LETTERS, WRITTEN BY MEMBERS OF THE ANAPHYLAXIS
CAMPAIGN
Letter 1
Thank you for giving me the chance to tell you
about our experience of trying to get treatment for my daughter
through the National Health Service.
In April 2000 my then 18-month-old daughter
(who already suffered from asthma and eczema) touched a piece
of toast with peanut butter on. Immediately she started to rub
her eyes, which I misinterpreted as her being tired. I put her
down for her usual sleep, but on waking, she had massive swelling
around her eyes. She later violently vomited. We took her to the
emergency doctor, who gave her Piriton and suggested we visited
the GP the next day.
My GP wrote to Guy's and St Thomas' Hospital
in April 2000 to arrange an appointment at the allergy clinic.
The appointment received was for the September, a six-month wait.
I visited my GP to suggest that this was a considerably long time,
but he assured me that this was the best place to go and the earliest
appointment that could be made.
During that six-month period, we knew she had
a peanut allergy, but had no real understanding, training or medication
to deal with a reaction. Unfortunately, in August, just three
weeks before her appointment, she was merely in the vicinity of
other children, who had eaten nuts. As a result of this, she developed
immediate swelling around her eyes and lips, followed by uncontrollable
coughing. We had to call an ambulance and adrenaline was given.
This traumatic experience for her, and us as
a family, could have been avoided, if we had been seen earlier.
Our appointment at Guy's and St Thomas' found
her to have a strongly positive reaction to nuts (five times the
histamine level). They were very helpful, but unfortunately on
each visit we saw someone different, who did not know our daughter's
history. Each time we had to explain her symptoms and various
other allergies. There was no consistency, which I feel is very
important.
We now see an Allergy Specialist privately at
The Portland Hospital, which has transformed our lives!
Our daughter is now five and is coping well
with her allergies under our careful and watchful eyes. She has
had a few minor reactions, but nothing serious, as we are now
very knowledgeable and extremely careful.
The six months that we had to wait could have
been fatal. She should have been tested and prescribed Epipens
immediately after her first reaction.
There needs to be far more information and specialists
available to deal with this ever increasing problem. If it were
not for the Anaphylaxis Campaign, I would not have anywhere near
as much information as I feel I need to deal with this situation
on a daily basis.
17 May 2004
Letter 2
I appreciate the chance to comment on my experiences
of allergy services in the UK.
I was diagnosed with anaphylaxis to peanuts
in September 1999 at the age of 23. However, I knew I had an allergy
sometime before this, and thankfully was in a fortunate position
that it was only peanuts that elicited an allergenic response,
and therefore, was able to avoid them to the best of my knowledge.
However, as trace amounts can bring about an allergic response
this was not always possible. At first my symptoms were mild,
but with each exposure became more severe, and I experienced tingling
of the lips and mouth, constriction of the throat and asthma.
I understood the potential for these symptoms to develop into
life threatening anaphylaxis.
When I visited my GP in the summer of 1999 I
explained the symptoms that I experienced. My GP suggested straight
away that I should seek the advice of an allergy specialist, but
warned that if I were to do this on the NHS then I would have
to wait at least six to 12 months. I was told that as my symptoms
sounded severe I would likely need an adrenaline auto injector,
but the only way I could be prescribed this was after a diagnosis
from an allergy specialist. Apart from being told that my symptoms
were potentially life threatening and that I would have to avoid
peanuts, I was given no practical or medical advice. Due to the
severity of the allergy, and the long waiting times I discussed
the option of seeking a private consultation, and was told that
that would be possible but I would need to find a consultant myself
that would be willing to see me before a referral letter could
be written.
I felt that I really had no choice: either I
wait at least six to 12 months for an appointment with a specialist
and hope that I did not come into contact with peanuts, or I pay
for the consultation myself. Thankfully I was in a position that
I could receive a diagnosis privately and received an appointment
within two weeks. I was given a prescription for adrenaline and
lots of advice which has been very useful, and thankfully I now
lead a normal life knowing that I have something to reverse symptoms
should I accidentally be exposed to peanuts.
Since my diagnosis, on occasion, I have had
problems being prescribed more than one auto-injector at a time.
I have been advised that I must carry two auto-injectors on my
person in case one fails to operate or that one dose of adrenaline
is not enough. When I explain the reason for needing at least
two this is understood, but this is a concern for individuals
who may not have been given the same advice as me. I have also
been told that I should take anti-histamine tablets should I experience
a mild reaction, but again the advice that I have received from
GPs has been inconsistent. I have been told to take tablets every
day in case I am exposed to an allergen, I have also been told
to take them only when I experience symptoms.
As a result of the insufficient numbers of allergy
specialists and clinics in the UK, and the long waiting lists
to receive an appointment, I felt my only choice was to seek a
private consultation. This was a costly exercise and not something
that all individuals with allergy are able to do. I feel that
seeking a private consultation could have been avoided had there
been more and better allergy services and support available to
me.
19 May 2004
Letter 3
"Thank you for setting up this committee
and giving me a chance to comment".
When Kiera was first born we all felt she was
different, she went through 80 nappies a week got a lot of hives
and had itchy red skin. Any doctor or health visitor I spoke to
felt this was normal.
At nine months she ate her first egg, immediately
she started to choke, her lips and eyes swelled, she broke out
in huge hives, she even dozed off for a while, (I cringe when
I think of that now,) but we knew very little about allergy then.
After a five-hour wait, we saw the doctor, who gave her piriton,
she said Kiera had an egg allergy.
From that moment on we avoided eggs the best
we could, though she did have another bad reaction when she took
a piece of wedding cake, her eyes took two days to return to normal.
In February 2003 Kiera was one moment really
well and healthy the next wheezing with a severe runny nose and
vomiting. We rang the on-call doctor who felt she had a virus.
We still felt very worried hours later so we took her in to our
doctor who straightaway called 999. By the time we got to A&E
Kiera was nearly unconscious and it took them some time to stabilise
her, at that point she was referred to Bristol Children's Hospital
where she was put on a ventilator. Doctors never found any virus
or bacteria, their verdict was pneumonia.
Two weeks later we were home again hoping it
would never happen again, only it did six weeks later, all the
same symptoms as before, runny nose, wheezing and vomiting etc,
she was put on more antibiotics for possible virus etc, they never
found any! She had hives too.
At this point I asked nearly every doctor that
came in the room "would they consider doing some allergy
tests"? All said no, it was probably pneumonia, or that allergy
tests were very expensive. They did care for her very well; I
get the feeling that they were quite puzzled by her symptoms.
After a good debate with her consultant she was referred back
to Bristol, where they did some allergy testing it was found she
was allergic to nine out of ten things—some of which were
egg, pollen, house dust mite, dogs, cats, horses, milk and she
had a IgE number of 212 which I'm told was, quite high. At this
point we were given an Epipen.
Only a few weeks later Kiera was ill once more,
as before all the same symptoms, this time when she was in hospital
she was given Steroids, Ventolin, Becotide, Antihistamines and
Singular tablets. She picked up very quickly and we were home
within a few days. We were given all the above drugs to use at
home.
We were then referred to St Mary's—in
Paddington, London, where they were extremely helpful, we found
out Kiera had a strong reaction to nuts, something that we'd not
known before. We were given a treatment plan which gave us a little
more confidence should things go wrong.
Thankfully Kiera improved a lot, although would
go down hill if we missed her antihistamine.
Last Saturday Kiera had an anaphylactic shock
one moment she was eating toast, within half an hour she started
to cough, her face went very red, she then began wheezing, vomiting
and the whole of her top half was covered in hives, at that point
she was becoming very sleepy so we gave her the Epipen which worked
very well. We had already given her Ventolin and Piriton which
had no effect.
When we got to hospital we were seen very quickly
but we were sent home within half an hour which seems a very short
amount of time considering that one in four people can have a
second phase reaction. We where given another pen but I see the
shelf life is only two months! The doctor didn't seem very interested
about what may have caused the reaction; it's only been through
our own investigation that we think it was a sunflower.
My son Cameron is also allergic to nuts, egg,
milk and bananas, I also suspect he has a house dust mite and
hayfever allergy, he also has asthma but I can't ever see him
being referred to an allergy clinic.
My personal feeling is that had doctors had
a better understanding in allergy, Kiera might not have had to
have so many hospital visits. And if I had not spoken up and challenged
their diagnoses would they have even thought of allergy? Would
she have gone on being treated for pneumonia and given endless
antibiotics? We'll never know for sure, but I'd be willing to
bet there are a lot of people like Kiera that slip through the
net. I do worry about people who don't have the courage to ask
questions, after all the parent often has a good hunch about what
is wrong with their child.
Kiera's Epipens were up for renewal a couple
of weeks ago, I had to stand my ground to get more than one. Once
again I was told they were expensive, but I'm not willing to penny
pinch on my daughter's life! I haven't been given them on repeat
prescription so I dare say next year I'll have another battle
before me. Last week shows only to well how important they are.
If one had misfired or had run out of date where would we have
been—I hate to think.
After speaking to many people at a support group
the lack of allergy care within Devon is really awful, sooner
or later a life could be lost due to utter ignorance.
May 2004
Letter 4
Thank you for giving me the opportunity to express
my views on the current state of allergy services within the NHS.
I shall give a brief outline of my experiences:
August 1998
I became aware that I was reacting to certain
foods, eg crunchy nut cornflakes and peanut butter. My GP agreed
that perhaps I had an allergy, so she gave me an adrenalin pen
and referred me to the Allergy Clinic (North Bristol NHS Trust).
No information given.
September 2000
Finally my appointment at the allergy clinic,
I had a series of tests and was told that I was reactive to tree
nuts, peanuts and sesame.
I had an adrenalin pen and two years on, I still
had no idea how to use it!
The whole experience of the clinic left me confused,
there was no help or guidance of any kind, not even a booklet
or a sheet of paper outlining my allergy. I got the impression
that I was wasting their time.
I did my own research into my allergy and was
horrified to learn that I had a fatal food allergy. I felt very
angry, hurt and let down, by the NHS that, not one profession
or medical person could have spared five minutes to explain my
allergy.
From my experiences it appears to me that there
is a dire lack of funding going into allergy clinics, resulting
in a lack of doctors, nurses and support staff and essential reading
materials.
What is required throughout the clinics is proper
training of all staff, not only in the allergy itself but in communication
skills as well.
May 2004
Letter 5
I have a two year old son who has a life-threatening
allergy to nuts and eggs. I would like to pass on my experiences
for consideration in your enquiry.
When my son had his initial anaphylactic reaction
in November last year, the Paediatric A&E team at our hospital
closely monitored him and he was given Piriton Syrup and steroids
as the symptoms were gradually clearing up. After a few hours
we left hospital with more steroids and Piriton but we were not
given any information at all about what to do next. We only had
instructions for the next three days. We weren't told to avoid
nuts, we were not given any written or spoken information, we
were not told to go to the doctor for referral, we were not told
about Epipens, we were not told about skin prick testing, anaphylaxis
was never mentioned and no-one suggested that the raw egg in the
peanut butter cookie mixture our son had eaten could also have
caused the reaction. It was only through surfing the internet
and finding the anaphylaxis campaign that I realized how potentially
serious the situation was and what I needed to do.
I went to see my GP and asked for a private
referral (we are lucky enough to have private medical care) and
Epipens. Our GP questioned my initial request for an Epipen before
my son had his skinprick test but when I pushed him he grudgingly
gave me one Epipen (but not two). I was not shown how to use them
either at the doctors or the chemist. Again I found out this information
for myself via the internet.
Through skin prick testing his allergy to nuts
and eggs was confirmed and he will have to carry Epipens and Piriton
with him wherever he goes from now on in case of a reaction.
We were well looked after in A&E, the staff
were attentive and caring and we didn't have to wait too long
to be seen but their lack of knowledge about anaphylaxis and what
we should be doing next was frightening and potentially life-threatening
for my son. This situation needs to be addressed urgently, more
information needs to be given to pharmacists, GP's, hospital staff
and the general public about serious allergies and how to deal
with them.
14 May 2004
Letter 6
As one of the many severe allergy sufferers
living in the UK today, I greatly appreciate this opportunity
to share with you some of my own experiences regarding anaphylaxis
and the healthcare / support networks that currently exist in
this country. I very much hope that this feedback will prove beneficial
in assessing the impact anaphylaxis has on sufferers' daily lives,
and will help determine ways to best move forward in the future.
Please note, I've included a bullet point summary
at the end of this letter in case you don't have time to read
everything; however, I hope you do as I feel this will give you
a far greater understanding.
I first experienced an anaphylactic shock about
five years ago after playing a game of squash at the local sports
centre. When I went for a drink in the bar afterwards, I literally
only touched my lips with the outside of a glass of orange juice
and lemonade, when I immediately felt "funny" and realised
I couldn't sense any feeling in my lips and face. I went to the
changing rooms to check myself in the mirror and to splash some
water on my face, and was horrified by what I saw. My whole face
had swollen beyond recognition and I was rapidly feeling worse
and worse. Despite a lack of any support from the First Aider
on site I was eventually rushed to A&E where I was put on
heart monitors and given adrenaline injections and antihistamines.
Several hours later I was sent home, and told to contact my GP
first thing the following day.
My GP explained that I had experienced a severe
allergic reaction and suggested I should see an immunologist as
soon as possible. Due to having private medical cover at the time,
I was promptly seen and given prick tests for the same brands
of orange and lemonade that had been in the glass at the Sports
Centre bar. The results were inconclusive, but after the dialogue
I had with the immunologist I was told I probably had oral allergy
syndrome. I was given a list of foods which, based on my hay fever
season, may be best to avoid (at least raw). At the same time
I was prescribed an adrenaline injection (Epi Pen) by my GP.
Naturally is was frustrating to still not know
what it was that had caused the reaction, or to have any offers
of help in ever finding out what it might have been. However,
I did at least take some comfort from knowing that I now had the
necessary medicine to treat myself promptly if the problem arose
again. My own investigations on the Internet taught me that the
reaction could have been caused by even the slightest trace of
peanuts on the outside of the glass, or that carmine dyes often
used in orange drinks have also been known to induce anaphylaxis.
I also discovered that exercise could bring on anaphylaxis too.
Despite finding the uncertainty disturbing,
I carried on, with a definite sense of denial about the whole
thing, for about three and half years without serious incident.
In the latter part of 2002, and the early part
of 2003 I was having a lot of problems with eczema and general
ill health. I was convinced this was due to my diet and as such
had taken to avoiding certain foods including dairy produce, substituting
soya products instead. At the same time I was having long running
problems with my eyesight, and after having a central serous retinopathy
and allergic conjunctivitis diagnosed I was eventually referred
to the Ophthalmology department at Gloucester Hospital. I was
scheduled to have some analysis done of my retina taken by injecting
a dye and then taking photographs of the dye's movement over a
period of approximately 10 minutes or so.
On arrival at the hospital I was given some
eye drops to dilate my pupils, and asked if I had any allergies
they should be aware of. I explained my allergy history in great
detail, and was told that although there was a slight chance of
me reacting to the dye, they had been doing this for eight years
and never had a problem. It was also joked at that time that there
was a "crash" machine on standby so I had nothing to
worry about. I was then asked to wait in the waiting room whilst
the eye drops had time to take effect. When it was my turn to
go in for the procedure proper I was asked if I felt ok—I
complained that I felt woosey and was told that this was not uncommon.
The dye was then injected into my arm, and I was put into position
to have the photographs taken.
Approximately one minute into the procedure
the doctor asked if I was feeling alright. I struggled to answer
her and felt very heavy and weak. I could sense and hear things
going on around me, but was unable to lift my head, move or communicate.
My vision became tunnelled and I felt very much outside my own
body. I was also finding it difficult to breathe and had to be
given oxygen. I heard mention of my blood pressure dropping rapidly,
at which point my mother (who had driven me to the hospital that
day and was waiting outside) was asked to come into the room.
After several shots of (what I believe were)
adrenaline, antihistamine and steroids I began to come round and
was able to speak. I was given a cup of tea and a biscuit and
told I could go home after having them. As soon as I tried to
drink the tea I started shaking all over, and quickly slipped
back to a state similar to how I was before. I'm not sure on the
details of what happened next, but I do remember an ambulance
being called and being taken to A&E where I was kept until
early the following morning. Throughout being in A&E I was
kept on oxygen as I continued to struggle with breathing, and
my heart rate and blood pressure were also monitored.
On arriving at the men's wards I was told I
would be kept in overnight and that the Immunologist would see
me in the morning. The following day no one seemed to know what
was happening, and I was offered food and drink without any question
as to whether I was allergic to it or not. Eventually, I discovered
there were no arrangements for an Immunologist to visit me whilst
I was in hospital, and that this would take weeks, maybe months
to be arranged. On managing to eat some food I was allowed to
go home.
It was very noticeable how hard this reaction
had affected me relative to the reaction I had experienced before.
For nearly a week I struggled to even get out of bed, and I began
to experience difficulty in breathing too.
After a few weeks had passed I went down to
Cornwall to visit my sister for the day, and on the way back we
stopped for some food. As I drove back onto the motorway I felt
extremely ill, couldn't breathe, and it seemed to me that I was
having another allergic reaction. My wife was able to confirm
that my face and tongue were not swelling and fortunately we were
able to make it to the next junction reasonably quickly. It now
seemed apparent that I was actually having a panic attack, although
at the time I struggled to realise or rationalise this fact.
Having already had inconclusive RAST test results
back from my GP, I returned to ask him to expedite my seeing the
immunologist as I was finding it difficult to know what I could
eat based on the guidance that had been given me. He commented
himself that I was losing a lot of weight, and that he could tell
I was really troubled.
Months of waiting, chasing, lost letters, mis-directed
messages and unbelievable admin errors followed, and still it
was looking like further months of waiting and uncertainty before
I would get to see the specialist. In this time I "resorted"
to seeking alternative help from a local nutritionist/kinesiologist.
She was amazing. As soon as I spoke to her on the phone she said
she could tell I was in need of immediate help, and she agreed
to meet me the next day, staying late after work especially. I
was very sceptical of her methods of diagnosis, but felt immediately
better being given the chance to discuss what had happened. I
was even given a diagnosis (systemic candidiasis) and an explanation
as to why I might suddenly be allergic to things that I had happily
eaten before.
Initially I continued to be sceptical despite
the diagnosis making good sense, however as the treatment began
to work with astonishing speed I knew I was in good hands and
should follow her advice faithfully.
Eventually an appointment came through for me
to see the immunologist I was supposed to have seen whilst in
hospital, so in an attempt to ensure the session went well I prepared
a potted history and list of questions I felt I really needed
answering. At the appointment I was told there wasn't sufficient
time to go through all my paperwork as there was only a set period
of time allocated, and therefore I would have to prioritise my
questions until the time ran out. Several times during the meeting
the immunologist left the room to see to other patients, and in
the end I was told that I probably didn't have anaphylaxis and
should go ahead and eat the foods I had previously been avoiding
due to them coming out as positives on my RAST tests. I expressed
my concern at doing this, and when I explicitly asked if he was
recommending that I go ahead and eat some peanuts, he changed
his mind and suggested that I should perhaps avoid those after
all.
Thoroughly troubled by the appointment with
the immunologist, I decided to stick with the advice I was getting
from the kinesiologist instead. During this time I continued to
seek answers to my questions using the Internet, and it was in
doing so that I first made contact with the Anaphylaxis Campaign.
Again, this was a huge benefit to my overall well being, as I
now had a contact for helpful considerate people who were knowledgeable
about my condition. From speaking to members of the Campaign I
quickly learned that it is advisable to have 2 Epi Pens prescribed
due to the importance of this medicine in the event of a severe
reaction.
In April 2003 I moved house, and as such decided
to take the opportunity to change my GP after numerous unsatisfactory
dealings with my previous practice. I was delighted to find my
new GP far more understanding, and was amazed when he suggested
a double appointment to allow time to go through my history at
length. Further tests were subsequently carried out, and due to
my high IgE levels I was now advised to avoid all allergens where
I had registered a positive result, even if these positives were
not especially high individually. It was suggested that I was
"prone to anaphylaxis" and therefore should consider
any allergen as being a potential trigger, and this is how I now
live my life and manage my condition.
The tests I have had carried out by the kinesiologist
and the GP correlate very closely so I now totally avoid nuts,
wheat, and soya from anything I eat.
After having skins tests carried out for my
eczema I was told I was allergic (skin rash, not anaphylaxis)
to "carba mix" which is used in a number of rubber products,
so, out of curiosity I asked if I should be tested for any allergy
to latex (common trigger for anaphylaxis) as well. The results
came back positive so this was added to the allergy card and bracelet
that I carry with me at all times.
Despite not being happy to eat out due the improbability
of any restaurant being able to prepare food that is clear of
contamination from nuts, wheat and soya, I feel I now manage my
diet very well. My life, and my wife's life, have changed significantly
as a direct result of the aforementioned experiences, but without
the help of my kinesiologist, the Anaphylaxis Campaign, and the
information available on the internet I seriously doubt whether
I would have got past the point of considerable anxiety that I
was in a little over a year ago. It is imperative that more is
done to educate GPs and hospital staff on the basics of severe
allergy awareness, and with the number of children with severe
allergies dramatically on the increase we need better education
in schools as well. I also feel we need legislation ensuring labelling
of ingredients in food is extended to include guidance on cross
contamination including trace elements, but, above all, we need
education for the general public to prevent people with severe
allergies being treated like "freaks" or social outcasts.
My own efforts in addressing these needs have
brought me into contact with many fellow sufferers through a small
documentary that I have started to film. I have been amazed at
the lack of understanding sufferers have to endure from family
and friends, and almost everyone I've spoken to has had at least
one person say to them "a little bit won't hurt you, surely".
Several people have expressed how the biggest change they struggle
with is the loss of a social life, and one lady has even experienced
direct discrimination by being asked not to attend a company Christmas
party due to her condition.
I hope describing my own experiences helps you
to form an accurate picture of what it is like to experience severe
allergic reactions to food and medicine, and I trust this will
prove useful in taking the appropriate steps to improve the quality
of service that can be offered by the NHS, through better awareness
and other measures.
SUMMARY
— I've experienced two severe allergic
reactions, one of which could have been avoided if the NHS staff
had taken my allergy history more seriously.
— I believe my condition may have been
caused by medicines prescribed in the past.
— I have to carry two life-saving adrenaline
injections with me all the time. I had to educate my GP as to
why two Epi Pens are necessary. Generally GPs do not prescribe
two injections, neither are they particularly good at demonstrating
to the patient how to use them.
— Alternative medicine has been far
more helpful and eager to understand than the NHS. It would be
great if the NHS would embrace this complementary medicine, rather
than seeing it as competition to be scoffed at, and dismissed,
without thought.
— Food allergies are not taken seriously
in the UK. This includes the food industry, the NHS, and indeed
the general public.
— GPs are themselves frustrated at
not understanding severe allergies better. Several have openly
admitted to me that they wish they knew more than me about the
condition.
— People tend to consider nut allergies
as being more serious than other food allergies. They are generally
not aware of "anaphylaxis" and the fact that it can
be triggered by any allergen.
— Sufferers are often made to feel
like social outcasts and hypochondriacs. People seem unable to
comprehend that food can be life-threatening, and are typically
quick to state or imply that it's a figment of the sufferer's
imagination. On numerous occasions I've had people say to me "surely
just a little bit won't hurt you", or they have jokingly
wafted a bag of peanuts under my nose.
— There is a drastic lack of specialist
immunology help in the South West.
— Having a severe food allergy makes
eating out in restaurants nigh on impossible for some.
Letter 7
I am writing to highlight my experiences of,
and disappointment with, the services and support available in
this country to those suffering with allergies.
It became painfully clear to me following the
birth of my son six years ago, and his subsequent development
of life-threatening food allergies, that there is a woeful lack
of readily available information/expertise in relation to this
health specialty.
I live in Berkshire which does not even have
an allergy consultant since Rita Brown retired as, it would seem
on a cost basis, a decision was taken not to replace her. When
I was pregnant I joined the National Childbirth Trust ("NCT")—of
the six mums in our group two of the babies produced have serious
allergy to nuts and now have epipens, to say nothing of the asthma
sufferers in the group—and I don't believe for one minute
that we are not reasonably representative of the local population.
Allergy (and intolerance) has not, until very
recently, even formed part of the basic training of doctors. I
received some poor, and often contradictory, advice along the
painful learning curve that comes with having a very allergic
young man in my care. There have been a few highlights (for example
the pharmacist who did take my concerns about my son seriously
and gave me instruction re giving of liquid Piriton by syringe
at the first sign of something serious, which more than likely
saved my then six-month old son when he went into shock on his
first bottle of formula). But on the whole these highlights have
been too few.
I also learned along the way that "there's
no evidence to suggest" can often mean "there's been
inadequate research in this area"; ("we've no idea"
would be more honest).
There was a short time when there I did feel
that there was some more "joined up" care available
ie when James was referred to Great Ormond Street Hospital ("GOSH")
allergy clinic. With the support of the fantastic dietician, Chris
Carter, and the clinical team under Professor Stobel, I at least
felt someone was monitoring his development thoroughly and telephone
support was available from Chris. At GOSH I received advice re
the delayed introduction of certain highly allergenic foods (eg
eggs, kiwi). I am fairly certain that this has assisted James
in not developing a major problem with these foods. This type
of advice is just not available generally.
You can imagine my anger and disgust when the
GOSH Clinic was closed by withdrawal of funding. In fact I'm not
sure my faith in the medical services in this country will ever
be entirely restored.
I have also been amazed by the comparison between
the advice/guidance which was made available to me (particularly
prior to GOSH) and that which I have subsequently found has been
made available to friends in Australia and US re allergies (eg
if there are allergies in the family, guidance is given on diet
during pregnancy and breastfeeding and on when to introduce potentially
problem foods). In fact I don't think we need to go as far to
find some uncomfortable comparisons. A friend who lived here and
whose son has asthma went to live in Germany. The first thing
her doctor did was ask what her son was allergic to ie what triggered
his asthma so that steps could be taken to minimise reactions.
Her doctor could not believe that this had not already been investigated—and
immediately arranged all available tests.
To be honest it has made me feel that I was
living in the third world at times. Preventative advice does not
seem to be the order of the day—and once the problem is
there (currently incurable and a constant feature of the affected
person's life) all that is taught is avoidance (which frankly
no one needs to be told).
It seems to me that there are a number of areas
that need immediate attention:
(a) better awareness of allergies amongst
the medical profession and the general population (I've met a
number of people who reacted adversely to things but did not realise
the potential risks they were running);
(b) prompt, accurate and readily available
testing (and support/advice) for those with allergies;
(c) research, to find more accurate ways
of testing for allergies and intolerances, to better treat them
and finally to understand more fully the mechanism by which they
develop in the hope the development of allergies can be prevented,
or ideally reversed. Drug companies clearly have a vested interest
in finding drugs to treat illnesses—this country needs to
spend money to find ways of avoiding or curing illness.
Allergies are a growing problem. They can have
a severe, if not final, affect on the lives of sufferers—and
at the very least they can make life pretty miserable at times
(my little boy would love to go to a party and eat what the others
are eating!).
It seems to me, as a lay person, and putting
aside the actual direct symptoms of allergic reactions, that many
major illnesses have their roots in our auto-immune responses.
If we had a better grip on how and why these responses operate.
I can't help but thinking we might find the key to stopping some
of these things from developing.
Please make this country a better place for
my little boy to grow up in. Some things have improved in the
last six years—in particular the availability of "free
from" type foods—but its not enough.
20 May 2004
Letter 8
Thank you for allowing me to share with you
my family's experience with allergy services.
EMMA'S
STORY
I am from an atopic family and my husband has
problems with peanuts. Neither of us has had a referral to an
allergy clinic or specific advice on how to avoid allergies in
our children.
Our daughter had a reaction to biological washing
powder. I knew she had a high risk of other reactions so we asked
if she could be tested for peanut allergy. We were told this was
only possible if she had already had a reaction to nuts as the
test would have to be at hospital. We were given no advice on
how to test her safely ourselves. Not knowing what else to do
we kept her away from nuts until she was five then rubbed a peanut
on her skin. When that produced no reaction we let her eat half
a nut. She said her throat felt as if it was closing over so we
gave her antihistamine and left it for another couple of years.
Then we felt we had to know one way or the other as she was increasingly
going to other houses and tried again. It produced a similar response
so we asked our doctor for a referral. As there was no rash he
refused. We weren't happy but accepted our doctor should know
best.
About two weeks later at Brownies our daughter
was given a chocolate cake containing nuts. She had a severe reaction
and we called the emergency doctor. We live in a rural area and
they would have been unable to reach us for perhaps an hour but
they did not advise us to call an ambulance. While they were still
en route Emma vomited and began to recover. We had a very disturbed
night—no-one had warned us of the possibility of a secondary
reaction so we did not realise we should have again sought medical
attention.
The emergency doctor had recommended an epipen
but our doctor still thought it wasn't an allergic reaction and
was reluctant to refer us for testing. Fortunately our practise
includes a female doctor who is allergic to nuts. After I threatened
legal action for negligence if my daughter had another, reaction
my GP agreed to seek her advice urgently. We then had an epipen,
an apology and a referral. Training in the use of the epipen consisted
of our doctor reading us the leaflet enclosed with the pen.
The nut allergic doctor gave us the address
of the Anaphylaxis Campaign. They provided us with a trainer pen
and a video on how to use the epipen. They were also the only
people to offer any emotional support. It is traumatic to discover
your child has a life-threatening condition. Nut warnings on labels
are easy to miss and whenever your child is away from you there
is the fear that someone else will not check their food carefully
enough. The death of a milk allergic baby at a nursery did not
help. To make your child take sufficient care you have to tell
them of the risk to their life. Recent research has shown how
scared nut allergic children are—but our daughter's nightmares
and night terrors had already made us well aware of that.
We waited months to see a consultant. Emma's
allergy to peanuts is so severe that it is off the top of the
scale. Her blood test is positive for all tree nuts. During the
wait to see the consultant my daughter had no epipen at school,
also at least 35 minutes from a hospital, as our doctor would
not confirm the diagnosis and without a firm diagnosis the school
would not accept the epipen. We discovered later, from other parents
of allergic children, that our doctor had not prescribed the fastest
acting antihistamine for minor reactions. Once we had a formal
diagnosis I had to arrange training in the use of the epipen for
staff at my daughter's school.
We are extremely strict about our daughter's
food—but there is a limit to what we can achieve. She reacts
to slight contamination, even to traces of peanut from a pool
cue that were transferred accidentally to her mouth. She has a
handicap—but without the support given to children with
other handicaps. Her epipens may one day save her life, but are
also vital for her social life and my sanity.
We are aware that we have been extremely lucky.
Our inexpert attempts at testing for
nut allergy were not fatal.
Because we have allergies we had access
to antihistamine promptly when our daughter had a severe reaction
and the secondary reaction was less severe.
Emma vomited up the nuts—she
might otherwise have died before the emergency doctor reached
us.
We have a nut allergic doctor in our
practise and hence were able to get an epipen before seeing the
consultant, although her life was still at risk at school.
Thanks to an Anaphylaxis Campaign meet
up we have the fastest acting anti-histamine for minor reactions.
We have been able to see an excellent
consultant.
The staff at our daughter's school
have been willing to be trained to use the epipen—there
is no requirement that they administer this life-saving medication.
A child's life should not depend on luck!
14 May 2004
Letter 9
My son Aneil was diagnosed with asthma at the
age of about eight months. His attacks occurred every few months
and each time he was taken into Newcross hospital and put on a
nebuliser. As a result of these frequent attacks he was asked
to attend Dr Ross' outpatient's clinic on a regular basis.
At the age of three Aneil was diagnosed with
nut allergy. He came into contact with cashew nuts and had a severe
reaction. I was told that this was a life-threatening condition
and Aneil should be kept away from all nuts. We were given epipen
injections for emergencies.
At one of the outpatient appointments I discussed
Aneil's allergy with Dr Ross. I asked for Aneil to have a "nut
challenge". I felt that he might only be allergic to cashew
nuts and not all of the other types of nuts. Cashews would be
easier for me to eliminate from his diet. Dr Ross agreed to do
the challenges. Aneil was challenged with seven different nuts.
He was severely allergic to four of them.
The service we received from the hospital was
excellent. We were given a room for the day of each challenge.
There was a television and videos for Aneil to watch. The nurses
were very pleasant and the doctors were on hand, their approach
to Aneil's condition was one of sympathy and understanding.
Aneil is now eight. He has been discharged from
the outpatient's clinic. His asthma is controlled and we have
learned to cope with his allergy.
14 May 2004
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