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Allergy matters

Khadj Rouf previews a special feature.

24 September 2019

This year, amidst much dismal news, the reports into inquests of deaths of people with severe food allergies make particularly depressing reading. It’s notable that the victims have often been younger people and that they were either given misinformation or deprived of vital information which could have kept them safe. It has also been notable that some food outlets have failed to be proactive, or even react in a timely manner, to ensure that people can eat their products safely. The details of these news stories are heart rending, particularly as the deaths could have been prevented if the issue of allergy had been taken seriously.

It feels important to flag the matter of severe allergy. I’m a psychologist, but I’m also a parent of young people with multiple and severe allergies. Living with severe allergies is a daily negotiation and one that goes far beyond having a medical condition, into the realm of psychology, including safety within social spaces. I’d love our profession to put this issue more firmly on the agenda.

Nobody really knows why, but allergies are on the rise, at least across Europe, and this trend is set to continue (EAACI, 2016). About 20% of the population are affected by allergies, such as asthma, eczema or milder food allergies (Pawankar et al., 2013). Severe allergic reactions can happen fast, often in everyday ‘non-dangerous’ settings, and can be life threatening. Severe reactions are also increasing; there were 4,836 admissions to A&E in 2017-2018 (NHS Digital, 2018). These reactions can be truly traumatic for people, and can have long lasting impacts.

There are numerous theories about why there is an increase, with growing interest in gut health, diet and environmental factors, such pollution and climate change (Haahtela et al., 2013). What’s clearer is that the rate at which allergy is increasing means that the demand for services, particularly for psychological help, is inadequate. Until the time comes when we can prevent or effectively treat severe food allergy, the advice is ‘avoid the allergen and carry emergency medication’.

This sounds so simple, doesn’t it? But actually, experience indicates that there’s a high degree of emotional labour attached to it. There are lots of significant social spaces and relationships to navigate. At best, it is worrying… at worst, plain frightening.

I would welcome a broader conversation about responding to allergy, because food allergens can be really hard to avoid. Trying to manage other people’s responses can make it tempting not to bother eating out at all. Reactions to checking about allergens can include well-meaning ignorance, such as a recent discussion at a café, where I was asked whether microwaving a piece of cake would be a helpful way to destroy milk and egg allergens. Responses can also include deliberate recklessness on the part of others, highlighted in a recent article describing how chefs and family members may just ignore a person’s allergy as ‘faddy’ and assume that they know better than the sufferer. This kind of attitude can cost someone their life.

Living with allergy also means taking safety precautions, and trying to keep those proportionate in a world which has differing levels of understanding about the condition. This can have wide impacts, such as ensuring that there is an A&E department not too far away when on holiday. It also means being very clear about having access to life saving medication at all times. Many people were understandably anxious last year, when there were several months of national shortage of the Adrenaline Auto-Injectors (Epipens), a first line treatment for anaphylaxis.

There’s a push needed around allergy services, which is of course, hard to say when public services everywhere are so painfully stretched. But life experiences can be transformed by encountering people who are allergy informed, competent and have enough humility to ask what is helpful. These encounters are joyous and can make life – at school, on holiday, at celebrations, at university or work – feel safe and bearable. Given that allergies are on the rise, much more can be done to help sufferers, their families and also improve public understanding of the conditions.

Allergy matters. We should not lose sight of the fact that some of the recent deaths reported were avoidable. Ignorance really can become a matter of life and death.

- Dr Khadj Rouf, Consultant Clinical Psychologist

The Psychologist will be running a special feature on allergy at the end of this year.

References
EAACI (European Academy of Allergy and Clinical Immunology) (2016). Tackling the allergy crisis in Europe - Concerted policy action needed. Brussels: EU Liaison Office.

Haahtela, T., Holgate, S., Pawankar, R., Akdis, C.A., Benjaponpitak, S., Caraballo, L., Demain,J, Portnoy,J., von Hertzen,L., and WAO Special Committee on Climate Change and Biodiversity (2013). The biodiversity hypothesis and allergic disease: world allergy organization position statement. World Allergy Organization Journal, 6:3

NICE (2011). Food allergy in children and young people. Clinical Guideline no.116. London: Author

Pawankar R, C. G. (2013). The WAO White Book on Allergy (Update 2013).