Allergy sufferers tell of ‘traumatic’ experiences ordering food after mistakes led to teenagers’ deaths | UK News
Think back to the last time you went to a restaurant. Did the waiter ask you if you have any allergies?
By law, restaurants, cafes, and pubs are required to tell their customers if anything they serve contains any of the 14 most common allergens.
But it does not have to be written on the menu – and can be conveyed orally by staff or made available online for diners to check on their phones.
The death of 15-year-old Natasha Ednan-Laperouse in 2016, after a severe allergic reaction to a Pret A Manger baguette, resulted in the law being tightened around “prepacked for direct sale” (PPDS) goods.
After “Natasha’s Law” came into force in 2021, outlets that package their products on-site must now provide a full ingredients list on the label, with any of the top 14 allergens highlighted.
But despite Natasha’s story leading to some increase in awareness, allergy sufferers and their loved ones still face daily anxiety – and fatal mistakes still happen.
An inquest heard that 13-year-old Hannah Jacobs died after taking a single sip of a Costa Coffee hot chocolate, which contained cow’s milk, to which she was severely allergic.
Hannah’s mother said she told the barista at the branch in Barking, east London, her daughter was severely allergic to dairy, and they agreed to clean the jug the drink was made in as an extra precaution.
But after a “failure of communication between the mother and the barista”, she collapsed and died later that day – on 8 February 2022, the coroner ruled.
Other high-profile cases include Celia Marsh, a mother-of-five with a dairy allergy who died in Bath in 2017 after eating a Pret vegan wrap that included dairy protein.
Meanwhile, 18-year-old Owen Carey’s family has been campaigning for tighter restaurant regulations after his Byron chicken burger was accidentally marinated in buttermilk.
‘Trauma’ of holidays
Around 2.4 million adults in the UK have a food allergy, according to the latest survey by the Food Standards Agency (FSA). In children, prevalence is between 2 and 4%.
Margaret Kelman, a mother-of-three from Fife and specialist allergy nurse for charity Allergy UK, is one of them.
Just a few weeks ago, she experienced a similar situation to Hannah Jacobs and her mother – having asked for soya milk in her tea at an airport, stressing she had an allergy.
“I’ve been in coffee shops and they’ve put the wrong milk in,” she tells Sky News.
“This time I said, ‘I’m sorry, that’s got cow’s milk in,’ and the server was very stressed, got quite agitated, and replied, ‘Look, I’m really busy, you’ll just have to take it,’ and I said ‘I’m sorry I can’t.’
“I watch like a hawk when I’m eating out and my food is being prepared, but this instance reinforces that if I hadn’t and I’d drunk it I’d have gone into anaphylaxis.”
Ms Kelman, who has also had severe asthma and skin allergies since she was a child, says she often finds her severe dairy allergy is confused with lactose intolerance.
Intolerances develop when a person’s gut is unable to break down enzymes in certain foods, often resulting in abdominal discomfort and diarrhoea.
Allergies, however, are more serious and induce an immune response. They can cause someone to go into anaphylaxis, which results in swelling, airways being blocked, and a loss of consciousness. If not treated fast enough with adrenaline, it is fatal.
Ms Kelman has been admitted to hospital several times as a result of her allergies, two of which left her unconscious and in need of resuscitation.
Recalling the first, when her son was a year old, she says: “The anxiety when my children were younger of leaving them without a mother was really quite frightening.”
She says holidays can feel “traumatic” and require lots or preparation, some restaurants have refused to serve her for fear they can’t cater to her needs, and she avoids certain social situations she finds too anxiety-inducing.
“It has a huge impact on your physical and mental health,” she says.
“I find it incredibly stressful and it has a knock-on effect for everyone around me. We need to eat and drink many, many times a day so every time you take a mouthful, you have to check if it’s safe. Imagine how stressful and time-consuming that is.”
No laws outside top 14 allergens
Allergy patients and their families say Natasha’s Law has made certain settings less stressful.
Her parents Tanya and Nadim Ednan-Laperouse have also set up the Natasha Allergy Research Foundation, which is funding a £2.5m immunotherapy trial that aims to gradually expose patients to their allergens through everyday foods.
But many warn current laws still do not go far enough.
Ten-year-old Eden Kooner was diagnosed with allergies to wheat, eggs, nuts, and several legumes when he was a toddler.
Most of these fall outside the top 14, which means his school canteen, restaurants, and cafes are not legally required to provide information on them.
His mother Bal says the family, from Derby, rarely go to restaurants as a result.
“We don’t eat out that often,” she says. “I think because we’ve done a cost-benefit analysis with our mental health.”
She likens the risk of Eden’s allergens to “little grenades about to go off – just lying around in his day”.
“That’s what it feels like,” she says. “For me, the situation is as good as the person I’ve got stood in front of me. If I think they’ve got it, I’m reassured, but if I see they haven’t understood, I tend to just walk out.”
Ms Kooner says Natasha’s Law and other high-profile cases have aided awareness to some extent.
She points to the recent case of former Love Island star Jack Fowler, who has a nut allergy and said he had a “real possibility of dying” after he had an allergic reaction on an Emirates flight to Dubai.
Emirates said it “can’t guarantee our meals are nut free” and that “we serve nuts on all our flights”.
“If you have a nut allergy, we recommend discussing your travel plans with your doctor before you fly and please contact your local Emirates office,” the airline’s statement added.
Ms Kooner says of Fowler’s Instagram posts: “He’s probably raised more awareness than much of the medical community ever could.”
But there is still a long way to go, she adds.
“Nuts are quite easy for people to understand because they’re so infamous and well known. But there are people who still think there are only 14 allergens – you can be allergic to anything.”
Calls for more NHS allergy experts
A new generation of babies are born with allergies every year. There is some genetic link, but a large combination of environmental factors, including infection history, antibiotic use, and pollution exposure, means scientists do not know the exact cause.
They also warn there are not enough allergy specialists working within the NHS.
“We’ve had a capacity issue around properly diagnosing and managing allergies for years in the UK,” says Professor Sheena Cruickshank, an immunologist and professor of biomedical sciences and public engagement at the University of Manchester.
Allergy UK and the British Society for Immunology last year signed an open letter calling for the NHS to commission more allergy nurses and dieticians for each area, she says, “so people with allergies can access specialist care irrespective of their location”.
Dr Paul Turner, reader in paediatric allergy and clinical immunology at Imperial College London, adds that adult services are particularly stretched.
He says this has a huge impact on patients when they turn 18 – an age associated with big life changes which bring more risks.
“Older teenagers are too old to be seen by paediatric allergy services,” he says. “But they’re at the very age when massive change is happening in their lives – and there are not enough specialists for that age group.”
Conflicting advice has also caused anxiety for parents.
After years of warnings not to give newborns peanuts, a study by King’s College London showed teenagers who ate smooth peanut butter before they were five were 71% less likely to develop a nut allergy.
This suggests building up a tolerance for potential allergens could reduce the chances of them developing later on.
Food hygiene-style allergy register needed
Allergy UK is calling for full written disclosure of all ingredients to be mandatory in all hospitality establishments, with training required for all staff.
From a personal perspective, Ms Kelman also believes a public register of allergy incidents, similar to food hygiene ratings, would be helpful and allow patients to make better choices of where to eat out.
“It’s about understanding how this makes people feel,” she adds.
“I’ve read a lot online of people saying: ‘If you’ve got a food allergy, why do you eat out?’. But staying in my house not going anywhere to keep myself safe is not a practical way to live. Social eating is the norm for the majority of the population so why not for people with allergies?”
Darren Whitby, head of incidents and resilience at the Food Standards Agency, said it extends its “deepest sympathies” to Hannah Jacobs and all those who have lost loved ones because of food allergies.
”It is essential that people can confidently buy and consume food without worry, and we will be carefully considering any points raised during the inquest,” he added.
What has Costa, Pret and Byron Burger said?
After Hannah’s inquest, Costa said it has “listened to everything the coroner has said and will carefully consider her comments together with any report she may issue and respond appropriately”.
Pret A Manger said it “moved to full labelling of all products produced in its kitchens” and “committed to improving our monitoring and complaints handling procedures” around allergies following Natasha Ednan-Laperouse’s inquest.
Its chief executive Pano Christou said of the Celia Marsh case: “As a father and husband, I can only imagine how distressing this has been for Celia’s children and family.”
The company “fully supports” the coroner’s findings that the third-party company that provided the yoghurt in Ms Marsh’s wrap “had information which should have been alerted them that their yoghurt may have contained milk and this information was not passed on to Pret”, he added.
Byron Burger said it extends its “deepest sympathies to all those impacted” by Owen Carey’s “tragic” death.
It said it has “comprehensive procedures to ensure the highest standards of safety” and “our teams are trained to follow strict guidelines and protocols, particularly in the communication of allergen information, which remains a top priority for us”.
Sky News has contacted NHS England for comment.