Select Committee on Health Minutes of Evidence

Supplementary evidence by the Anaphylaxis campaign (AL 31A)


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.


    —  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.


  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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