Campaigners Lindiwe Lewis and Daniel Kelly talk about living with allergies

Cressida has just published this excellent interview she did with Lindiwe Lewis and Daniel Kelly on her Linked in page. I thought it needed a wider airing. Understanding allergy from the inside out is so important, so Lindi’s and Dan’s comments are massively helpful.

How do you socialise when you have multiple allergies? Is it possible to dine out? Do establishments cater to food allergies or do you need to take a packed lunch?

Lindi has multiple anaphylactic food allergies; Dan is severely allergic to peanuts. Any common ground? They both love socialising! They have a shared love of travel, exercise, dance, books, and we picked their brains about what it’s like heading out with allergies.

Dan is a social media creative, podcast host, founder of May Contain, and a Youth Ambassador for Anaphylaxis Campaign. Dan’s aim is to make allergies more relatable and give young people the confidence to speak up.

Lindi is a freelance writer, blogger, podcast host, social media content creator, and a student at The Open University. She founded The Allergy Table Blog, a platform bringing the Food Allergy community together and sharing the person behind the allergy. She is importantly, for the purposes of this interview, behind the bar. As bar staff, she knows what goes on – both behind and in front of the bar!

Here are a few stats for you in the UK:

●               1-2% of adults and 5-8% of children in the UK live with a food allergy

●               There are estimated to be 10 deaths per year as a result of food allergies

Human connections – behind the allergy and the bar

What are your best experiences of going ‘out out’?

Lindi: When I come away unscathed; where I’m taken care of, but my allergies are not the centre of attention. When the server leans in to me discreetly and asks “are you doing ok?”

Dan: The best experiences are generally when I tell the server my allergies and they take it seriously. They also understand it better if they have a friend or family with allergy, but if they don’t have a personal relationship with allergy they don’t really understand the severity. It’s always better to get served by someone who has a personal connection.

What is your worst experience? Where do establishments fail?

Lindi: Sometimes, when I have told the staff, it’s worse! As I go through my list of allergies I can see the server slowly switching off. “It’s at your own risk!” I’m sick of hearing that.  Don’t put it back on us – we’re taking a risk just by leaving the house, and coming into your bar. Please, be more educated about what you’re serving – it is your establishment, in the end.

Dan: Drinking out. Spirits don’t always have ingredients listed. So, even if staff check the labelling, they can’t tell whether there are allergens in the product. [Alcohol labelling requires listing of the top 14 allergens contained, but as noted below, anything can be an allergen to someone.] It is then up to me and Google to find out! Alcohol brands need to be fully transparent regarding ingredients.

“You can give me the allergen menu – but I need the ingredients!”

What has changed?

Lindi: The allergen menu has altered the playing field significantly by creating more awareness about the top 14 EU-listed allergens.

Dan: I attribute this partly to the Natasha Allergy Research Foundation’s efforts and spreading the word about the loophole that caused Natasha’s death. It has helped with awareness of the seriousness of allergies.

Lindi: Unfortunately, the majority of my major allergens are not on this list. That proves difficult for me, and others who have multiple allergies,  as some people do not believe there are any other severe allergens other than those on that list. I think people need to understand that anything can be an allergen. I want the ingredients, not the allergy menu. Plus, at the moment, venues are so scared by the pandemic that they are letting allergy procedure slide, and refusing service, even though contamination prevention measures and safety procedures for both allergens and COVID are almost identical – wash everything frequently and well!

What recommendations would you like to make to establishments?

Lindi & Dan – List ingredients on EVERYTHING. Educate on EVERYTHING: snack breaks & hand-washing, drink mixing, bottle handling, washing out the measures, glass cleaning, bowl cleaning, table cleaning; you name it, clean it.

Dan: Employ staff with personal experience of allergies! Or get allergy reactors to come in and share their experiences with the staff! I’ve been to establishments to share my story… then food allergies become personal to the staff and the chefs.

Lindi: There is a joke that bartenders are therapists; well, therapists are patient and kind with a good ‘bed-side’ manner. Establishments need to hire staff that care about the job, the drinks, the customers. Are they educated in their role? Do they have compassion for their customers? The best staff members are the ones that know you and make you feel important: use that benchmark for people managing allergies and we will come back every time.

Do you think the biggest hidden danger for allergy reactors is drinks companies not declaring ingredients on their labels?

There is no legislation for ingredient inclusion on alcohol labelling.

Lindi: it is not helpful to say that every staff member has to be well-versed in every single drink, but if they can reach behind them, grab the bottle, check the label and find out what ingredients and allergens are in the drink it would make for safer evenings out, and less anxiety for the customer. And… even if the drink contains “not enough” of a particular ingredient or allergen to cause a reaction, it should still be declared because everybody has different levels of severity. Then it’s ‘just’ a question of a clean glass, allergen-free hands, snack free mixing area/utensils, and hey presto here’s your safe drink!

Dan: yeah absolutely – and even if the ingredients are listed, no ‘may contain’ label is required. Also, on cocktail ingredients’ lists – even if they do list the ingredients, they are not required to list garnishes which could be powdered nuts around the rim… this is super scary!

And finally, if you could introduce one policy what would it be?

Lindi: To make it mandatory to have one staff member on duty at any time,  who is fully trained in allergy safety – not just familiar with the top 14 major allergens – but all aspects of serving allergy reactors safely, what I term “deep deep allergen protocol”, including how to administer an adrenaline auto-injector (AAI). This ‘Allergy Guide’ bar staff could serve allergy reactors all evening. How about having them train with allergy reactors in attendance, so that staff learn what it feels like for us, dining or drinking in their establishment?

Dan: yep, and for every bar to have AAIs on hand and someone fully trained on how to use them! Some people don’t know they have allergies and if one member of staff knows the signs of a severe allergic reaction and how to use the AAI – they may save a life.