The first time I met Tanya, we just hugged and cried and cried,’ recalls Emma Turay.
‘At the time it was all so raw for me, but she was the first person I had spoken to who really understood what I was going through. She was saying what I was feeling, but wasn’t yet able to put into words.
‘We gelled straight away and spoke for quite a while, holding hands to give one another support. I knew we would see each other again.’
Tanya Ednan-Laperouse nods in agreement: ‘There was immediately a deep connection between us without really knowing each other — I just wanted to put my arms around her.’
For Emma and Tanya share a tragic bond: both lost their beloved teenage daughters to a food allergy — their children dying frightening, awful deaths as they struggled to breathe.
And, in each case, the tragedy is compounded by the knowledge that their child’s death was entirely preventable.
A series of errors — including 111 call handlers’ failure to identify the signs of a severe allergic reaction and the ambulance being sent to the wrong address — contributed to Shanté Turay-Thomas’s death at just 18 from anaphylaxis (a severe allergic reaction), triggered by nuts in September 2018.
Emma and Tanya share a tragic bond: both lost their beloved teenage daughters to a food allergy — their children dying frightening, awful deaths as they struggled to breathe
Natasha Ednan-Laperouse’s death at the age of 15 in 2016 made headlines around the world after she, too, died from anaphylaxis after eating a Pret a Manger baguette that didn’t list the ingredient sesame — to which she was highly allergic — on the label.
After that initial meeting in summer 2019, the two mothers had lunch together a few months later.
‘We both took our girls’ baby books to show each other and just talked and talked,’ says Emma, 48, from North London.
Tanya subsequently supported Emma during the ‘brutal experience’ of the inquest into Shanté’s death, attending the hearings most days.
‘We felt we needed to be on the journey together, and it was very comforting for me to know Tanya was there,’ says Emma.
Tanya adds: ‘When you have both lost a child, you can feel the other person’s pain as if it is your own.
‘We have talked for hours about our girls, sharing the joy of them and the loss, and we still keep in touch regularly, checking in with one another on the difficult days, asking how the other is feeling.
‘I now class Emma as a good friend,’ says Tanya, 54, from South-West London.
It was when the coroner investigating Shanté’s death highlighted the absence of a named person responsible for allergies in the NHS that the two women knew they had to take action to spare others similar tragedies.
And, today, they are launching a campaign to demand the Government appoints an allergy tsar, to champion the one in three people in the UK with an allergy, and improve NHS services and awareness of allergies, to prevent avoidable ill health and death.
Natasha Ednan-Laperouse’s death at the age of 15 in 2016 made headlines around the world after she, too, died from anaphylaxis after eating a Pret a Manger baguette that didn’t list the ingredient sesame — to which she was highly allergic — on the label
‘The trauma and grief are still there, like it was yesterday — it never eases,’ Emma tells Good Health in this exclusive interview to launch the campaign.
‘I try to be as positive as I can, but I just miss Shanté so much and that intensifies over time.
‘But what hurts the most is that I was her mum and I would have done anything for her. Yet, when it came to it, I was powerless. I put my trust in the people who are there to care for us, and they made mistakes.’
Tanya agrees: ‘Natasha’s death has left a gaping wound in our lives; her death was such a shock, so sudden. I still sometimes catch myself looking for her when I see children from her school walking home, wearing the same uniform that still hangs in her wardrobe.
‘And yet her death was so completely avoidable.’
Allergy is a major health problem in the UK, with rising numbers affected: more than two million people have a diagnosed food allergy (the main allergens are milk, eggs and nuts), 5.2 million have asthma (mainly allergic asthma) and 16 million have allergic rhinitis (pollen and dust mite allergies).
Hospital admissions for anaphylaxis increased by 615 per cent between 1992 and 2012, while a study by Imperial College London, published in The BMJ earlier this year, found that prescriptions for adrenaline auto-injectors or Epipens, to counter the allergic reaction, increased by 336 per cent over the decade.
Yet care for people with allergies is woefully inadequate, with little improvement in services over the past two decades, despite repeated warnings by doctors, MPs and coroners that patients are suffering unnecessarily, and in some cases dying, because of poor provisions.
After Shanté’s inquest in November 2019, the coroner pointed to the fact that there is ‘no person with named accountability for allergy services at NHS England or the Department of Health’, adding that ‘there is a risk that future deaths will occur unless action is taken’.
Professor Sir Stephen Holgate, one of the world’s leading allergy researchers and a clinical professor of immunopharmacology at the Medical Research Council, is backing the call for an allergy tsar. ‘Allergies are at epidemic levels in the UK, with one in three people now affected,’ he told Good Health. ‘Despite this growing burden of disease, there has been little investment in NHS allergy services for the past 20 years.
‘A shortage of allergy specialists and inadequate training among GPs means many patients with allergies fail to get the care and support they need,’ he says.
‘Appointing an allergy tsar to act as a champion for people with allergies would be an important first step in addressing this unmet need.’
It’s a move supported by public opinion, with a new poll of 2,000 adults for the campaign by Opinium showing that 75 per cent of all adults (with or without an allergy diagnosis) say allergies are a ‘major public health issue’, with 61 per cent backing calls for an allergy tsar — rising to 86 per cent among those with a diagnosed allergy (or with a child with one), a separate survey found.
‘Many people who don’t have direct experience don’t realise how serious, fast, frightening and fatal an allergic reaction can be,’ says Emma, an assistant director at a housing association, from Enfield, who has another daughter Allysha, 25.
After Shanté’s inquest in November 2019, the coroner pointed to the fact that there is ‘no person with named accountability for allergy services at NHS England or the Department of Health’, adding that ‘there is a risk that future deaths will occur unless action is taken’
‘We need someone to join the dots so there is a coherent, consistent pathway for people with allergies, rather than the potluck approach we currently have. Some people receive brilliant care, but many don’t.’
The status quo is ‘unacceptable’, adds Tanya. ‘We are getting results from inquests again and again that people are dying from allergies unnecessarily. The Government is currently not doing enough.’
A few weeks before starting a university law degree, Shanté had come home around 10pm from her summer job in sales at an energy company and told her mum: ‘I don’t feel well.’
With several allergies — including a nut allergy — Emma took Shanté’s comments seriously and called 111; since being diagnosed as an infant, Shanté had been admitted to hospital several times with asthma, although she’d not had a significant reaction to nuts since she was six.
‘Shanté was very sensible when it came to her food allergies — she knew what she could and couldn’t have,’ recalls Emma. ‘If anything, it was her asthma that I used to worry about.’
Although the emergency services dispatched an ambulance, it wasn’t given a high priority. Wheezing, Shanté took her inhaler, but it had no effect. She then tried her Epipen, but that failed, too.
Then, 29 minutes after her mother called 111, Shanté went into cardiac arrest and Emma started chest compressions.
‘The worst thing was Shanté seemed to know what was happening in the minutes before she collapsed,’ recalls Emma.
‘She was desperate. She said to me: ‘I’m going to die’ and then ‘Bye, Mum, I love you.’
‘I was screaming, somebody please help us,’ says Emma, who has since been diagnosed with post-traumatic stress disorder (PTSD). ‘It was so traumatic; I broke her ribs trying to save her,’ she says.
Shanté died in hospital in the early hours of the next day. In the months after, Emma — who ‘knew in my heart errors had been made’ — tried to find answers, eventually appointing a solicitor to help gather information.
However, it was only at the inquest more than a year later that the precise cause of death from anaphylaxis and the full scale of the errors were revealed.
‘The inquest was layer after layer of trauma as each of the 20 failings that contributed to Shanté’s death were uncovered,’ recalls Emma. ‘At times, I had to leave the room because I couldn’t cope.’
While the source of the fatal reaction was not identified, Emma believes Shanté ate something contaminated with hazelnut.
Allergies occur when the body’s immune system reacts to a substance as though it’s harmful.
Why they’re rising is unclear, although scientists believe it could be a combination of genetics, pollution, diet, and reduced exposure to infections, causing some people’s immune systems to react abnormally.
In many cases, those affected have more than one allergy, making such patients complex to treat.
Like Shanté, Natasha had several allergies — eczema, asthma and allergies to milk, eggs, nuts, banana and sesame seeds. Allergy symptoms vary from an itching sensation inside the mouth, ears and throat to rashes and facial swelling.
A severe reaction can lead to anaphylaxis, where the body becomes overwhelmed with chemicals that restrict breathing and cause blood pressure to plummet.
Allergies are a huge problem but remain a Cinderella service in the NHS, despite years of official reports calling for better care.
In 2003, a Royal College of Physicians’ report (Allergy: The Unmet Need) described it as a ‘major public health problem’, adding, ‘despite the epidemic proportions of the disease, the health service is failing to meet the most minimal standards of care’.
The report revealed there were only six full-time specialist NHS allergy services in the whole country and it called for more, as well as better GP training so patients could be referred to a single specialist rather than a succession of different doctors with no allergy expertise.
It also highlighted that the UK had ‘less than a handful’ of NHS children’s allergy specialists, while Sweden has 96.
This was followed by reports in 2004 and 2007 from the House of Lords Science and Technology Committee which issued the same stark warnings.
Yet little action has been taken, say doctors and campaigners. For while 16 new consultant posts have been created in the past decade, more allergy diagnoses means the ratio of doctors to patients hasn’t improved.
Many patients struggle to get the care they need — including even Epipens — from their GP, according to a report in 2014 by the National Allergy Strategy Group, an alliance of specialists and charities. ‘This lack of knowledge and a reluctance or inability to refer leads to huge anxiety for patients and their families,’ it concluded.
Another major problem is the failure of those in the hospitality sector to take allergies seriously. In 2017, Owen Carey, from Sussex, died after eating a burger containing buttermilk — despite telling the restaurant he had a dairy allergy.
The allergy tsar campaign is being launched under the auspices of the Natasha Allergy Research Foundation, a charity set up by Tanya and her husband Nadim, 56, who runs a toy company, to raise awareness and fund medical research. Professor Holgate is a trustee of the Foundation.
The appointment of an allergy tsar would mean the allergy epidemic is tackled ‘now rather than waiting another 20 years’, says the charity, with the goal of ending the postcode lottery of care by increasing the number of specialist NHS allergy clinics, training more specialist allergy doctors and improving communication between GPs and hospital allergy services.
Emma and Tanya both have first-hand experience of the huge gaps in NHS allergy provision — and their devastating consequences.
People with serious allergies are meant to carry two Epipens at all times — but while Natasha had six (two for school, two for home, two to carry with her) Shanté had been prescribed just one, and at an incorrect dose (300mcg, a child’s dose, even though as an adult, she needed 1,000mcg).
And when Shanté’s brand was changed, she wasn’t shown how to use the new device, a key failing that contributed to her death.
‘She was unaware — as was I — that she needed two shots of her adrenaline pen,’ says Emma. ‘She didn’t stand a chance.’
Tanya says ‘there was never any outside support’ for Natasha’s allergies. ‘We worked very hard as a family to manage them. Natasha was an incredibly mature and cautious girl around food.’
But the baguette she consumed on a flight to Nice contained sesame seeds that were baked into the bread. To her eternal regret, Tanya was not with her beloved child when she suffered the fatal reaction.
‘Every time Tashi had suffered any kind of reaction or was unwell, I was always right by her side. I know it wouldn’t have made any difference and it is not logical, but I should have been with her,’ says Tanya tearfully.
Following her death, Tanya and Nadim successfully campaigned for ‘Natasha’s Law’ which requires full ingredient labelling of pre-packed food such as sandwiches and salads made on premises.
After Natasha’s inquest, Pret-a- Manger issued an apology to her parents and promised to introduce full ingredients labelling on all its products, which it has since done even though it is not required until Natasha’s Law comes into effect on October 1.
What more could an allergy tsar do to help? Professor Karol Sikora, one of the country’s leading cancer experts, says NHS tsars can make a real difference. He points to oncologist Professor Sir Mike Richards, appointed the country’s first cancer tsar in 1999.
‘Before his appointment, the UK was falling far behind the rest of Europe in terms of cancer treatment and Mike Richards changed that. He raised the profile of cancer care and introduced the two-week referral time for suspected cancer cases. It made a huge difference to the quality of care patients received,’ says Professor Sikora.
Emma, Tanya and Nadim are today launching a petition to demand that the Government properly support people living with allergic disease. ‘The care and support currently offered to many people with allergies is not OK,’ says Emma. ‘If it was OK we would still have our daughters.’
To support the campaign, visit petition.parliament.uk/petitions/589716