10 things I learnt about preventing anaphylaxis in schools

The death of Raymond Cho

In mid December 2012, the NSW State Coroner, Mary Jerram, conducted an inquest into the tragic death of Raymond Cho, a 15 year old boy, from anaphylaxis. Anaphylaxis is a severe allergic reaction, which always requires an emergency response.

I attended the inquest and these are some thoughts that may help schools and other institutions prevent such deaths in future.

Magistrate Jerram found no individual was to blame, but that a set of unfortunate circumstances combined to lead to Raymond's death.

Raymond was known by his doctors to be anaphylactic to nuts, including walnuts. He had severe, poorly controlled asthma. He had a rare genetic disease, Klinefelter syndrome, which may have led to a mild expressive and receptive language disorder. He was from a non-English speaking background. His father spoke reasonable English, his mother somewhat less.

On the day which led to Raymond's death, cookies containing walnuts were baked in the food technology class. The class included instructions about nut allergies. Raymond was not part of that class, but his friends were. It was normal for the students to be able to eat the food they had prepared in class. This included sharing it in the playground.

Raymond's friends brought some walnut cookies into the playground to share at lunch time. Raymond was there and his friend offered him some. He asked whether there were peanuts in it. The friend said words to the effect, "no, but there are walnuts". Nobody will ever know why Raymond ate the cookie, the Coroner concluded. Possibly it was because, according to some evidence, the Chinese word for "peanut" and "nut" are the same, and so when Raymond asked whether there were peanuts, his intention was to ask about nuts generally.

After lunch they had maths. Raymond began feeling ill in maths, with an itchy throat and soft coughing. He drank a lot of water. His friends asked if he was ok and needed to go to the sick bay. He declined, and lay his head on the desk. Nobody alerted the teacher, who was not aware he was ill.

At the end of the lesson, Raymond got up and left the building. At the bottom of the stairs he collapsed. The trained first aid officer was on the scene very quickly and fetched asthma medication. Raymond said "EpiPen, EpiPen". The first aid officer quickly got another staff member (a casual teacher who had not been trained in the use of an EpiPen) to get Raymond's EpiPen. The teacher ran to the office to get it. He was back quickly. He attempted to give the EpiPen. Unfortunately, he injected his own thumb. He'd thought the end you take the top off was the active end - like a pen.

(The incidence of accidental injection with adrenaline autoinjectors appears not insignificant, with 105 cases being reported over 13 years in the US.The design of the EpiPen has changed since Raymond's death, in a way that appears likely to reduce this risk. It is still something to be improved, in my opinion - see below.)

The teacher ran back to the office to get another EpiPen. There was a brief, probably inconsequential, disagreement about whether he could use another child's EpiPen. It was resolved in favour of his doing so. He ran back with the second EpiPen and successfully administered it. The delay between the first and second EpiPen was about 2 minutes.

The teachers monitored Raymond and could feel a pulse, probably weak. On some evidence he began turning blue. They did not begin Cardio Pulmonary Resuscitation (CPR), on the grounds that a pulse was a sign of life. Various paramedic and medical witnesses agreed that CPR should not occur if there is a pulse. One medical witness considered it would have been beneficial if he was turning blue, and also to help the circulation of adrenaline. However, there was also evidence that airway occlusion was pronounced, which may have been an obstacle to successful CPR.

The ambulance arrived within about 10 minutes of being called, about 15-20 minutes after Raymond's collapse. By that time he no longer had a pulse. Resuscitation was attempted. Raymond was taken to hospital and put on life support. He died a few days later.

What are the lessons for schools?

Raymond's death is the second due to nut anaphylaxis in a NSW public school since 2002, the first being that of Hamidur Rahman.  There have been other deaths involving schools and child care centres in Australia.

While school systems and child care centres have been aware of the growing problem of food allergies for some years, and have systems in place, Raymond Cho's case shows that a number of apparently small system design features or unintended lapses can have tragic consequences.

1. Practise using the adrenaline autoinjector

All school staff should be trained regularly in recognising and responding to anaphylaxis. This includes casual staff.

Although face-to-face training - in which questions can be answered, and checking of correct practice can occur - is preferred, if it is not immediately available, there is an online e-training course provided by the Australasian Society for Clinical Immunology and Allergy (ASCIA).  It takes about one hour. It is worth the time.  It goes through the signs of anaphylaxis as well as how to use the two most common kinds of autoinjectors. (Since the inquest there has been high demand on this site, so it is worth coming back at a non-peak time if this is still the case).

It's very simple. For an EpiPen, it has a Blue end and an Orange end. The Blue end is the protective cap which needs to be removed. The Orange end is where the needle emerges.

The blue protective cap is is being removed by the blue glove at the top

cc licensed ( BY ) flickr photo by gregfriese: http://flickr.com/photos/gfriese/6871652499/

 Remember: "Blue to the sky [blue sky, get it?], Orange to the thigh".

"Blue to the sky, orange to the thigh" 

cc licensed ( BY ) flickr photo by gregfriese
 http://flickr.com/photos/gfriese/6871651393/

The pen needs to be kept in for at least 10 seconds. You should rub the thigh to aid the adrenaline's circulation.

If symptoms don't improve within 5 minutes, a second EpiPen should be given.  Don't rely on my description here. At least, do the ASCIA e-training.

There are various different brands of adrenaline autoinjectors. The two brands available in Australia are the EpiPen and the AnaPen. ("Epi" comes from "epinephrine", the US word for adrenaline.)  There are other brands available in the US and Europe.  Given the EpiPen is overwhelmingly the most commonly used brand in Australia, it is important to be trained in the use of this one.  But schools should check they are trained in any auto-injector that a student at the school has been prescribed.

These pens work in slightly different ways. The risk of incorrect use is significant. In my personal opinion, a standard design is desirable, to prevent confusion. (Against this, one medical witness at the inquest argued that some children were more comfortable using the AnaPen model and he felt, to help compliance with self-administration if required, it was important to retain choice. Also if a monopoly develops it may lead to price hikes).

2. Know in advance whose auto-injectors can be used.
Ideally each person diagnosed with anaphylaxis will have their own EpiPen . Anybody's Epipen can and should be used in a situation in which a person is believed to be having an anaphylactic reaction. It does not matter whether the autoinjector belongs to somebody else, or whether the person has been previously diagnosed with anaphylaxis. If in doubt - use it!

The clearest medical advice is that the risk of an adverse reaction to adrenaline is minuscule compared to the risk of untreated anaphylaxis.

All NSW government schools now have at least one general use EpiPen. At least Queensland and Victoria have similar policies.

But the bottom line is, any autoinjector should be used rather than no autoinjector.

Some staff may fear legal consequences if they get such a decision wrong. Eliminate this myth from your thinking! The law protects individuals who are trying to help others in an emergency, or what the genuinely believe is an emergency, even if they make a mistake.  The  Civil Liability Act 2002 contains a "Good Samaritan"  clause which provides protection for people assisting in an emergency (see section 57). And, the Employees Liability Act 1991  requires employers to indemnify their employees against liability arising in the course of their employment. (All other Australian States and Territories, except, so far as I can discover, Queensland, have very similar protections for good Samaritans; and all would have the civil law doctrine of vicarious liability).

As well, the law creates a duty on teachers to come to the emergency care of their pupils.

3. Schools need to get general use auto-injectors

EpiPens can be purchased over the counter at Australian pharmacies. You don't need a prescription. (It is far cheaper for individuals, however, if they have a prescription from a paediatrician or allergy specialist, as the first 2 autoinjectors will be available at around one quarter of the cost through the Pharmaceutical Benefits Scheme (PBS). Don't ask me why only specialists can prescribe, nor why only 2 are available. No doubt these are rationing devices).

Schools ought to have on hand some general use autoinjectors. In NSW all government schools have been supplied with EpiPens. Some other Australian states have similar arrangements.  The number of autoinjectors will depend on the size of the school population and other school specific factors.

The need for using autoinjectors that are not prescribed for individual students arises in at least three cases:

• where an individual who was previously undiagnosed has an anaphylactic reaction
• where the first autoinjector misfires
• where a first adrenaline injection has not caused a significant improvement within 5 minutes.

Given the overall incidence of anaphylactic food allergy, the majority of schools probably have at least one affected student or staff member. But some may not. Nevertheless, school is sometimes the place where an anaphylactic reaction first occurs.

4 Check autoinjector expiry dates

There was evidence at the inquest that the first EpiPen was about 6 months out of date. EpiPens are designed to last about 18 months from date of first availability for sale. They need to be replaced.

But just because an EpiPen has expired, does not mean it is of zero effect. There was evidence that the expiry date is the time until which they are expected to maintain 100 percent efficacy. But the month after expiry, they could  still be above, say, 90 percent. And in fact, they may still retain some effectiveness for quite some time (so long as the little window does not show the liquid inside has turned brown). Even if the adrenaline dose was only, say, 30 percent, it would be worth giving if there was no alternative.  So perhaps rather than disposing of expired EpiPen, some should be kept safely on hand in case of emergency. (I emphasise this is my own opinion rather than any formal recommendation from a health authority).

5 Encourage students to keep their EpiPen with them at all times

Time between the onset of anaphylaxis and the development of severe life-threatening symptoms can be very short - as little as a minute or two. The time between realising that an adrenaline autoinjector is needed and being able to administer it may therefore be critical. It might be minimised if, in addition to an autoinjector kept by the school, one is also kept on the student's person at all times (subject, presumably, to a verification that the student has sufficient mental capacity to keep it with them and administer it). 

The Coroner recommended that for secondary students at least, schools encourage students and parents to keep their autoinjectors on them.

6 With suspected anaphylaxis, don't move the patient

If anaphylaxis is occurring, it is important not to move the patient. They should remain sitting or lying down. Exercise can bring on a critical loss of blood volume (as fluid leaks from the blood vessels into the other tissues causing swelling), and consequent loss of circulation.

7 Practise Cardio Pulmonary Resuscitation and know the circumstances when it should be given.

There was some apparent ambiguity about the circumstances when CPR should be commenced. Various people gave evidence that if there remained a pulse, CPR should not be given. Most guidance on CPR suggests that it should be given if there are no "signs of life", but define these as not breathing and not being unconscious  There is some suggestion that commencing CPR if there is a weak pulse may disrupt the pulse. On the other hand, moving the blood around the body, even if there is no airway, may help sustain life for critical moments.In any case, many lay people, in an emergency, relying on their memory of CPR instructions, may regard a pulse as a 'sign of life' and refrain from commencing it.

In my personal opinion, this issue needs to be communicated far more clearly by safety organisations. If there is no clear medical consensus, work needs to be done to develop one. If there is an existing consensus, it needs to be better communicated.

In any case, this speaks to the need to ensure schools receive regular training updates, particularly if 'best practice' may be evolving over time.

8 Consider your obligation if there is a  combination of disabilities and other risk factors

Schools need to consider the impact of anaphylaxis on children who have other disabilities.  If they have intellectual disabilities or learning disorders, schools in consultation with parents and medical practitioners, may need to check what the student understands about their food allergy. If the student has a physical disability, the school may need to check that they are capable of self-administering the pen.

Under the Disability Standards for Education 2005 (Cth), all Australian schools are legally obliged to make reasonable adjustments to allow students with a disability to participate in education on the same basis as students without the disability. The definition of disability is sufficiently broad to cover anaphylaxis. This means schools need to make reasonable adjustments to allow students with anaphylaxis to participate in the curriculum. This may mean modifying food technology or excursions to allow it to occur. If there are multiple disabilities, modifications with respect to each of the disabilities need to be considered.

9 Bullying

The Coroner was clear in Raymond's case that there was no suggestion at all that he was 'bullied' into eating the cookie.  Nevertheless, the issues of bullying and peer pressure in relation to anaphylaxis are live ones for schools generally.

One recent US study showed that of children with food allergy surveyed, about one in three experienced bullying on the grounds of food allergy.  While this is unfortunate of itself, it may also contribute to the risk of a severe allergic reaction; if children are bullied into eating or trying foods to which they are allergic, this could have fatal consequences.

Schools should be aware that this may occur and be vigilant to avoid this risk playing out.

10 consider whether nuts are really necessary

The Coroner recommended that schools consider restricting the use of nuts in food technology and other curriculum areas.

cc licensed ( BY ) flickr photo by Iwan Gabovitch:
 http://flickr.com/photos/qubodup/8268525159/

This recommendation is under consideration and was subject to differing views among anaphylaxis experts who gave evidence at the inquest.  In favour of the restriction are the following points:

• usually nuts can be substituted by other foods - it is not strictly necessary to use nuts
• while there are many foods that some students may be allergic to, nut allergy (and peanut allergy, since it is not, strictly, a nut) persists into adulthood and is associated with a relatively high proportion of food allergy anaphylaxis
• a restriction on the use of nuts is not necessarily a ban on nuts or a claim that a school is nut-free

Against such a restriction:

• it will be hard to enforce, especially if interpreted as 'a ban'. (For example, cigarettes are banned in schools, but enforcement of the ban is, ahem, incomplete, to say the least). 
• students may be lulled into a false sense of security, but should remain vigilant about ingesting food with nuts
• if we restrict nuts, what about the over 100 other foods to which some people have food allergy?

No doubt this debate will play out in coming months.

Why is the incidence of anaphylaxis increasing?

I have found no good systematic answer to this question, but its premise appears true. There appears to be evidence of an increase in food allergies in Australia, the UK, USA, Korea, Sweden, Germany, the United Arab Emirates. There appears to be a lack of data with respect to Asia. There is also a view that a comparative lack of reporting in developing companies may not have taken into account the common symptoms of anaphylaxis and malnutrition.

No systematic official Australian records are kept about death from food related anaphylaxis (according to expert evidence in the inquest). There have been at least 4 deaths in the last decade in Australia involving schools or child care centres. One medical expert who gave evidence at the inquest expressed the view that we faced "a tsunami" of future food allergy cases as this increase in incidence fed through into high schools.

The causes of this increase are not clearly known or well researched. One popular theory has it that children have been underexposed to potential allergens and over-react later in life. Another theory posits that vitamin D deficiency may have a causal role. None of these explain, to my satisfaction, a change in circumstances that were present 15 or 20 years ago.

Conclusion

I note that the Coroner gave her findings and recommendations orally at the end of the inquest.  At the time of writing, they do not appear to have been published on the Coroner's website, but may appear there before long.

I am not a doctor, and do not put this forward as professional medical or emergency advice. To the best of my knowledge and conscientious effort, it represents what health professionals have advised. If any of this is medically incorrect I am happy to correct it.

But in any case, that's not the point. For the "tsunami" of anaphylaxis to be successfully met, many many lay people across schools systems, and elsewhere in society, will need to develop a reasonable understanding of this phenomenon.