Daughter’s anaphylaxis attacks led nurse to create potentially life-saving tool
Nottingham hospitals’ only dedicated paediatric allergy nurse has created a simple, potentially life-saving tool for young people – after once fearing she’d lose her daughter in a severe anaphylaxis.
Lisa Clarke, Lead Clinical Nurse Specialist for Allergies at Nottingham University Hospitals NHS Trust (NUH), is mum to 23-year-old Aeron, who is allergic to all dairy products, eggs, and most nuts.
Aeron was diagnosed with milk and egg allergy after a significant reaction aged just 10 months. This was followed by a nasty anaphylaxis to milk at two years old, and to hazelnut at three. She’s had anaphylaxis that’s needed adrenaline – and treatment with an Epi-pen – five times.
“The first time it happened it took me a while to realise how serious it was,” said Lisa. “But in ED she lost consciousness and her heart rate dropped – I thought we were going to lose her that night.”
“Thankfully she recovered well and was home the next day.”
Lisa, who’s worked at NUH for 29 years and used to be nurse on the neonatal intensive care unit, retrained to specialise in allergy care.
She knows only too well that for people with food allergy, prevention is key due to the potentially life-threatening nature of the reactions. Managing an allergy rests of three principles; checking food/ingredients; avoiding exposure; and being ready to react if exposure happens.
Pre-teens and teens who are making the transition into adulthood - often starting secondary school or college and no longer under their parents’ watchful eyes - have to start taking responsibility for their health. This can be a tricky time for families as they try to balance the child’s safety with their freedom.
Young allergy patients wanted to know what the most important thing was for them to know about taking care of themselves. It came down to making sure that they could tell people about their allergies, not be shy or embarrassed, as that would help protect them.”
And so, with colleagues, Lisa developed the acronym ACE – Awareness, Checking, Emergency: make people Aware; Check ingredients; carry Emergency kit.
"It is such a simple way or remembering. I drew a triangle and wrote it around the sides. The ACE triangle is like a protective layer; you are in the middle and doing those three things will keep you safe.”
Lisa says ACE is a valuable tool because the vast majority of food allergies are untreated. Those with lifelong allergies are diagnosed and advised how to manage it; children who are going to outgrow allergies are supported to raise their tolerance levels. A tool to manage the risk not only can save lives – it makes day-to-day living less stressful.
Since then, Lisa has used it on youth days and in clinic and had co-authored a paper published in Nursing Children and Young People, the UK’s best-selling journal in child health nursing. She hopes other allergy treatment centres could help pilot ACE in nurse-led clinics and with dieticians.
“As a family after that we had a lot of fear about how to keep Aeron safe when milk is obviously everywhere.
“And when a nurse specialist job popped up in the allergy department I went for it. I worked in adult allergy for 12 years and became very skilled and knowledgeable. I moved over to the children’s hospital as lead nurse for allergy in 2019 and felt I could finally begin to make a difference to families and children going through what we went through.”
Things are changing though. Some clinics are beginning to treat food allergies with desensitisation, giving children increasing amounts of what they're allergic to to increase tolerance. Stopping children becoming allergic in the first place is also being explored.
“For years the advice has been to avoid certain foods until kids are older,” said Lisa. “Now we know that if you give children allergenic foods early, at weaning, and keep them in their diet at least twice a week, they're really unlikely to ever become allergic. And that's even more important if they've got high-risk factors, such as eczema.”
Aeron, 23, and a student at the University of Bangor, is supportive of Lisa’s ACE risk-management tool.
“I live a different life to the majority of people,” said Aeron. “I live a life that takes a little extra consideration, extra time, and extra concern – and comes with extra cost.
“For instance, doing a weekly food shop, trying new foods, and going out for dinner - I will always need to take extra time to read ingredients, double check, and try the smallest bite of a new food and wait five minutes to check if I react, in order to prevent anaphylaxis.
“I cannot simply eat like everyone else does. Luckily this has become increasingly easy as I’ve got older, with more dairy-free and nut-free options.”
Aeron is as pleased as her mum at these breakthroughs: “I'm delighted that for future generations this lifestyle and the associated danger is becoming more unlikely.”
Lisa also thanks co-authors Sian Caulton, senior youth worker, and Clare Alderson, youth worker, Nottingham Children’s Hospital. And Debra Forster, children’s respiratory and community nurse, Nicola Rew, clinical lead paediatric allergy dietician, and June Richards, paediatric dermatology clinical nurse specialist, at Nottingham Children’s Hospital, for contributing to plans for a youth independence event