At just nine years old, Jess Hoque has already experienced several episodes of a life-threatening reaction due to a dairy allergy he’s had since birth.
For his mum Billie, that means constant worry and vigilance about what her eldest son is eating and touching. ‘Every meal is a calculated risk,’ says Billie, a mum of three boys from Luton, Bedfordshire.
‘I micro-manage his diet,’ she adds. Jess experienced his first serious allergic reaction, known as anaphylaxis – which can affect the whole body and close the airways – at six months old in reaction to formula milk.
His second, aged six, was at his cousin’s birthday party.
Billie recalls: ‘My sister had given Jess a “free from” pizza thinking it would be OK, but it wasn’t free from dairy – only gluten.’
As Jess says: ‘I didn’t swallow any pizza, but the second I put it to my lips they started going all tingly.’
Within minutes they went to A&E – but an hour later, while still at the hospital waiting to be seen, ‘Jess looked at me and said, “Mum, I need Dad,” ’ recalls Billie.
‘His eyes started to go yellow and bulge, his lips swelled up – and I could see that he couldn’t swallow his saliva. I picked him up and he was limp.
Nine-year-old Jess Hoque, pictured (centre) with his mother, Billie, and brother, Jude, has experienced several episodes of a life-threatening reaction due to a dairy allergy
‘I screamed for the nurses and they came straight away, injecting him with adrenaline [which helps reverse the allergy symptoms].
‘He fully recovered, but an hour later he had another anaphylactic reaction.’
After more adrenaline, thankfully Jess recovered.
Billie’s paranoia about her son means she cooks everything from scratch. It’s a similar story for millions of families across the UK.
The very real danger they face was devastatingly brought to the national consciousness in 2016, when Natasha Ednan-Laperouse, 15, from London, collapsed on a flight to Nice after having an allergic reaction to a Pret A Manger baguette containing sesame.
This allergen was not listed on the label, and despite her father Nadim administering two adrenaline injections, Natasha suffered a fatal cardiac arrest.
The tragedy of Natasha’s sudden death prompted her family to launch a campaign to improve food labelling. Three years later, it resulted in Natasha’s Law, which compels all food businesses to provide full ingredient and allergen information on pre-packaged food sold on the premises, including sandwiches and cakes.
Now there is Benedict’s Law, which will come into force in September. It is named after Benedict Blythe, who died aged
five from anaphylaxis at school in Stamford, Lincs, in 2021, after delays in giving him an adrenaline pen – the new law requires schools to train staff about food allergies and provide access to adrenaline auto-injectors.
But relying on bereaved parents cannot be the appropriate way to improve prevention and care as more people than ever are affected by allergies.
Some campaigners are now pushing for change – and specifically the introduction of an ‘allergy tsar’ to push through improvements to allergy services and care.
More than 20 million people in the UK live with an allergic disorder, such as asthma, eczema and hay fever, as well as drug and food allergies, and their number is rising.
Natasha Ednan-Laperouse, 15, from London, collapsed on a flight to Nice after having an allergic reaction to a Pret A Manger baguette containing sesame
Th sesame allergen in the sandwich was not listed on the label, and despite Natasha’s father Nadim (pictured, with his wife, Tanya) administering two adrenaline injections, Natasha suffered a fatal cardiac arrest
The latest data show that hospital admissions due to allergy increased by 52 per cent between 2011 and 2017, while admissions for anaphylaxis rose by 29 per cent. Allergy UK estimates around 4.5 million people in the UK are at risk of a life-threatening severe reaction.
Food allergy – thought to affect around 2.4 million people in the UK – is particularly dangerous: a study by Imperial College London in 2021 found that from 1998 to 2018, hospital admissions for food-induced anaphylaxis increased by 5.7 per cent per year, or three-fold.
Cow’s milk causes over a quarter of deaths in children and is the single most common cause of fatal anaphylaxis in young people.
Many wrongly believe food allergies are only an issue for children, who grow out of them, says Helen Brough, a professor of paediatric allergy at Guy’s and St Thomas’ NHS Foundation Trust in London.
‘Adults can develop food allergies and it can come on in someone without any previous reactions,’ she says. ‘Recent figures show around 6 per cent of adults in the UK report having a food allergy –much higher than in the past.’
Yet despite five reports since 2003 calling for an improvement in allergy care, it remains a Cinderella service, with a postcode lottery for diagnosis and treatment, compounded by a desperate lack of allergy specialists.
The UK has around 40 specialist adult allergists, and slightly fewer paediatric allergists – that’s one adult specialist for every 1.3 million people in the UK.
‘Not only are we battling with an inadequate provision of specialist care, but we’re up against the disease pattern that has been increasing over the past few years,’ says Professor Adam Fox, a consultant paediatric allergist in London.
Next week sees the publication of a new report, the UK National Allergy Strategy, setting out priorities for improving allergy care. With input from specialists, education and industry experts as well as patients and their families, it is being hailed as the most far-reaching report on allergy services in 20 years.
But there are fears it will go the same way as other reports before it – bringing no substantial uplift to allergy care.
An allergy is where the immune system overreacts to a substance, treating it as a threat. It triggers the release of histamine into the blood, which causes an inflammatory response designed to rid the body of the allergen – in cases of food allergy, causing symptoms such as an itching sensation inside the mouth, ears and throat, a rash and swelling.
‘Most reactions are mild and pass, but a small number of cases get a more severe reaction – anaphylaxis – and it’s potentially life-threatening,’ says Professor Fox. ‘The onset of symptoms is typically rapid – within minutes of exposure, the airway swells, breathing becomes difficult and blood pressure drops. Patients need adrenaline quickly.’
He adds: ‘There are millions of people with food allergies and, thankfully, anaphylaxis is an incredibly rare event. But any fatal anaphylaxis is one too many – as someone who’s been involved as an expert witness in inquests, it’s clear that apart from very rare exceptions, they would all have been preventable.
‘We have an army of people with food allergies living their lives in fear. They’re frightened to eat out, to get on planes, to travel.’
Their numbers are growing partly, it’s thought, because children aren’t exposed to enough everyday germs, so their immune systems don’t learn how to respond properly and are more likely to overreact.
‘We now believe allergies are linked to the gut and the body’s natural barriers, like the skin,’ says Professor Brough.
‘In simple terms, modern Western lifestyles, including diets high in ultra-processed foods and increased exposure to harsh detergents, may damage these protective systems and disrupt the gut microbiome. This can increase the risk of developing food allergies.’
But how should allergy care be improved? The National Allergy Strategy is expected to recommend that allergy is formally recognised as a major chronic health condition, which deserves focused attention and management across the food, health and education sectors, as well as workplaces. It is also likely to call for improved management of allergies through education programmes for GPs, practice nurses and pharmacists.
But for campaigners – including Nadim and Tanya, the parents of Natasha Ednan-Laperouse – the most important step is the appointment of an allergy tsar.
This would be similar to the role of the cancer tsar – created in 1999 and credited with helping to improve UK survival rates significantly. In the years following Natasha’s death, her family have been inundated with stories from other parents worried about food allergy or those who had lost a loved one. In response they set up The Natasha Allergy Research Foundation, which funds food allergy research.
They believe allergy is too poorly – sometimes dangerously – managed in the NHS.
As Tanya says: ‘There is a postcode lottery of care and insufficient numbers of allergy doctors, so some people wait too long to access a specialist clinic or are not able to get allergy testing.’
For example, Londoners benefit from a concentration of hospitals with allergy services, but in Northern Ireland some families wait up to five years to be seen, says Professor Fox, who chairs the National Allergy Strategy Group.
Shanté Turay-Thomas, 18, who had a severe nut allergy, after a catalogue of mistakes: she had been prescribed the incorrect adrenaline pen by her GP, the call handler sent an ambulance to the wrong address, and the automated system did not categorise the call as urgent
Tanya adds: ‘There are also service gaps. Some young people’s management stops at age 16 when they leave paediatric care, and they’re not automatically assigned to an adult clinic. It is clear we need somebody to oversee allergy services in the UK, to work across the government.’
There have been repeated calls for improvements in multiple reports – most recently, in 2021, in a review by the All-Party Parliamentary Group for Allergy, which pronounced allergy a modern-day epidemic that the NHS was largely ignoring.
It also recommended the creation of a national clinical director for allergy (a tsar), ‘accountable for the development and then delivery of a plan for specialist care and primary care’.
This has also been stressed in repeated coroner reports on food allergy deaths.
When Shanté Turay-Thomas, an 18-year-old from north London who had a severe nut allergy, returned home in September 2018 complaining that she felt unwell, her mum Emma called 111.
As she waited for an ambulance, Shante’s symptoms worsened so she used her adrenaline pen, but had a cardiac arrest.
‘Bye Mum, I love you,’ were her final words.
The coroner issued a Prevention of Future Death report – which obliges the authorities to take action to prevent similar deaths – highlighting errors in her care.
Shanté was not prescribed the correct adrenaline pen by her GP, the call handler sent an ambulance to the wrong address, and the automated system incorrectly categorised the call as a category 2, instead of the most urgent category 1. The ambulance took 52 minutes to arrive.
Reviewing the case, the coroner identified a need for a single person with named accountability responsibility for allergy services.
Over the years, the government has appointed all kinds of tsars, including a night-time tsar, to ensure London thrives as a 24-hour city. While the NHS in England lists 58 national clinical directors and specialty advisers on a range of issues, there is no one person with overall named responsibility for allergy services. It is a similar situation in Wales, Scotland and Northern Ireland.
Nor is there a single mention of allergy or anaphylaxis in the NHS Long Term Plan – its ten-year strategy to improve patient care.
Tanya and Emma, who is now an ambassador for The Natasha Allergy Research Foundation, are determined to spare others similar tragedies.
‘We are just mums trying to stop other mums from going through what we went through,’ says Emma. ‘Just thinking about all the families who have lost their children this way – maybe if a tsar had been in place, they would be here.’
An NHS spokesman said it is developing guidance to support local services to improve allergy care and exploring oral immunotherapy for food allergies. They add: ‘Patients with concerns about managing their condition should contact their GP or allergy clinic.’
Trusting the wrong person nearly killed me
Indio Roe, 27, a student from Hove in East Sussex, says:
Student Indio Roe had a severe allergic reaction to a curry while working as an extra on a Bollywood film set in Brighton
I’ve lived with a severe nut allergy all my life and have always been incredibly cautious. But on July 15, 2024 – I will never forget the date – I made the mistake of trusting the wrong person.
At the time I was working as an extra on a Bollywood film set in Brighton. During lunch, I asked the producer if the curry was nut-free – he assured me it was.
As soon as I tasted a bit of the sauce, my mouth and throat began to swell rapidly, and my heartbeat began to race.
I used my adrenaline EpiPen, which usually works, but this time the symptoms got worse – terrified my throat would close up entirely, I ran to a local GP surgery two minutes away.
I knew running when you’re having a reaction is not advisable [exertion can accelerate histamine release], but I figured that was my only chance to get help quickly.
By the time I arrived, I was struggling to breathe and felt like I was going to pass out. I remember thinking ‘this is how it ends – killed by food’. It was terrifying.
The GP saw me instantly and saved my life by injecting me with a second dose of adrenaline. Paramedics soon arrived and rushed me to hospital.
The producer’s complacency could have killed me.
Today, I’m very careful to always carry two EpiPens and antihistamines – and always triple, or quadruple, check my food. If I’m ever uncertain, I just won’t eat.
