‘Someone cries in every clinic’ — the UK’s specialist allergy hospital

“Someone cries in every clinic”, says Professor Adam Fox as we tour the UK’s first specialist hospital dedicated to delivering groundbreaking food allergy treatments. “The difference is that it used to be crying in despair and now, broadly, it’s crying with happiness.” Around three million people live with food allergies in the UK. Until recently, treatment amounted to telling them what they were sensitive to and advising them to avoid it.

Now, therapies that can free children and their families from the constant fear of life-threatening reactions have burst onto the scene. Oral immunotherapy (OIT) involves giving a small, increasing dose of an allergen under medical supervision to build tolerance. If children start young, they can go from being at risk of dying from a trace of hazelnut, mustard, egg or another trigger, to tolerating a small amount. This can be enough to unlock new freedoms for terrified parents or allow a teenager to go on holiday with their friends.

One eight-year-old boy was able to travel to China to meet his grandparents for the first time after being treated for a peanut allergy at the clinic. Prof Fox says: “The difference between now and six years ago is night and day. Most kids diagnosed in infancy, we can actually cure.

“Even being OK with a couple of peanuts means you can stop worrying that someone has used the wrong knife or not scrubbed the pan properly, because you’re not going to react to small exposures, which are what cause the overwhelming majority of accidents.”

Charlie Arkley, 11, was given a new lease of life by OIT. She was diagnosed by Prof Fox with a severe allergy to four nuts — peanuts, cashews, Brazils and pistachios — after suffering from rashes as a baby.

There was little that could be done a decade ago. The family moved to New York, where she later suffered a terrifying reaction in a Halloween nightmare. Charlie and her baby sister Chloe, now 7, were trick-or-treating dressed as pirates when she bit into a piece of candy containing peanuts. An ambulance was called and she needed three shots of epinephrine.

Mum Suzi remembers: “That was a scary episode but at that point in 2018 the world of allergy medicine was still very much, ‘Just avoid the nuts you can’t eat, carry your EpiPens and be very diligent’.”

The family met with Prof Fox after returning to the UK in 2021 and were amazed to find things had changed. Suzi says: “He was telling us that if we brought Charlie to him at the age of 10 months now, we would have a very different strategy. This whole idea of early exposure had really gained traction in the time Charlie had grown up.”

Charlie joined the NHS waiting list for Palforzia, a drug that helps children build tolerance to peanuts. (It has since been discontinued by the manufacturer for operational reasons.)

Then she suffered another life-threatening reaction during a picnic, after eating a pastry emphatically labelled as nut-free. Suzi said: “After that, we decided we weren’t going to wait for the NHS. We were going to pay to do it privately.”

Over three years, Charlie completed six to eight months of OIT for each of the four nuts. “Now she eats a small dose of peanuts, Brazil nuts, cashews and pistachios every day,” Suzi says. “She mixes it with chocolate pudding. When she gets bored of chocolate pudding, she mixes it with hummus.”

The treatment means Charlie can enjoy the same freedoms as her peers, such as visiting her favourite matcha cafe with friends. She always informs staff about her allergy but now knows that if an error were made, it would not be lethal.

In February 2023, 13-year-old Hannah Jacobs died from a fatal anaphylactic reaction after taking a sip of a Costa Coffee hot chocolate mistakenly made with cow’s milk.

Charlie’s tolerance is “life changing, for her and for us”, Suzi says. “It’s been an incredible journey. I am absolutely in awe of how far this field of allergy medicine has evolved.

“My hope is that now there will be bigger things that Charlie will need to worry about as she embarks on her secondary school journey. This will always be there but it will be something she becomes comfortable living with, part of the muscle memory of how she goes about her day.”

The treatment cost tens of thousands of pounds. Suzi adds: “We had to make some sacrifices to afford it, but they were well worth making. I’m frustrated that more people cannot access it.”

NHS provision of OIT is a “patchy” postcode lottery, Prof Fox says. The paediatrician describes the situation as a “crisis”, particularly when research shows food allergies have doubled in the last 20 years.

He argues that such a huge gap between the burden of a disease and treatment provision would not be accepted in other specialties, such as cancer or heart care.

“The disparity between what we’re able to offer here and what you get offered in other developed healthcare economies is a disgrace,” Prof Fox adds. “The real frustration is that if we were able to instigate proper allergy prevention and put these disease-modifying treatments into place, it would save the NHS money.”

Prof Fox worked full-time in the NHS for 25 years, including nine as clinical lead for allergy at Guy’s & St Thomas’ Hospital, during which time it was recognised as an international centre of excellence. He initiated the first patient outside of the US on Palforzia at Great Ormond Street Hospital in 2021.

However, as these new therapies arrived, he says it became clear that the NHS lacked the organisational will to roll them out at scale. He and some other leaders in the field began to feel that “if we’re going to do this, we have to be in the private sector”.

He adds: “I came to the point where I felt that the right thing for me to do, in terms of actually looking after patients and doing what I could do best, was in the private sector, which is really sad.”

This is why he has joined forces with two top consultants — Professor George Du Toit and Professor Gideon Lack — to launch the Allergy Centre of Excellence. Their specialist hospital in London’s Marylebone is thought to be the biggest centre for OIT in Europe.

The clinic, which was officially launched last month, will see around 20,000 patients a year, including 500 seeking desensitisation. Prices for a course of OIT start at £6,000.

There is a paediatric intensive care doctor on site during treatments and a high dependency unit equipped for emergencies. There are large, open waiting areas where children can play while being easily observed.

And an on-site pharmacy dispenses novel drugs such as Neffy, the needle-free spray that can replace adrenaline auto-injectors. “There’s more expertise around anaphylaxis in this building than you’ll get anywhere else in the country,” Prof Fox says.

He spends two days a week here and also continues to work at his own private practice and in the NHS. He hopes the centre will demonstrate the benefits of comprehensive allergy care, providing a new model that could be rolled out.

Prof Fox adds: “The future looks very bright and it’s great to be a part of it. At the moment, somebody has to die in order for anybody to pay any attention, and we really do need to get past that.

“There are families that can’t get anywhere close to somewhere like this and that’s fundamentally wrong. We can do it in pockets — in central London where people can afford it.

“But people should have access everywhere, particularly when they’re first diagnosed in early childhood because that’s when the treatments make the biggest difference.”

A Department of Health and Social Care spokesperson said: “We know allergies can impact sufferers’ lives significantly and we commend Professor Adam Fox’s career-long efforts to improve allergy treatment.

“We are committed to improving care for people with allergies and that is why we are working with a range of partners and experts to consider how allergy care and support could be improved, including considering the recommendations in the National Allergy Strategy.”