This week is Allergy Awareness Week. In this blog for the hub, Tim McLachlan, Chief Executive of the Natasha Allergy Research Foundation, highlights the lack of support available for patients and their families who spend their lives trying to keep either themselves or their children safe. To date there has been little attention, importance and investment given to NHS allergy services and this, he says, needs to change.
Having a child with a food allergy can have a devastating effect on all of the family. Research by the University of East Anglia last month (March) revealed that almost half (42%) of parents of children living with food allergies have suffered trauma that meets the criteria for post-traumatic stress symptoms. It’s a shocking figure, but perhaps not surprising.
Between 6 and 8% of children have a food allergy, with the most common being eggs, milk and peanuts. The number of people admitted to hospital for severe food allergies has tripled over the past two decades according to research published in the BMJ this year. Deaths are thankfully rare but watching your child have a potentially life-threatening reaction to a food is harrowing. Then there is the day-to-day constant vigilance to try to avoid the allergen that could cause a reaction, the anxiety of not knowing when the next allergic reaction will occur and whether the prescribed EpiPen to counter a reaction will work. The uncertainty is huge.
Yet there is surprisingly little support for these parents who spend their lives trying to keep either themselves (if they have a food allergy) or their children safe. The Natasha Allergy Research Foundation was formed in 2019 to improve the lives of the 2 to 3 million people in the UK who have a food allergy and their families. It was set up by the parents of Natasha Ednan-Laperouse who died aged 15 in 2016 after having an allergic reaction to an ingredient hidden in a baguette. The charity focuses on medical research as well as education and raising awareness of food allergies.
Natasha’s parents, Tanya and Nadim, have also successfully campaigned for Natasha’s Law, which requires businesses to provide a full list of ingredients on pre-packaged food made and sold on the same premises, such as salads and sandwiches, from this October. They know only too well the challenges of caring for a child with a severe food allergy and are alarmed at the lack of support available to families.
Natasha had her first allergic reaction when she was six months old, when she ate a small amount of banana which caused her lips to swell until they split.
"She was screaming, it was just awful," recalls Tanya. "The second time, when she had formula milk, she looked like she’d been dropped into a vat of hot oil. Her skin was raised and bright red and she was in complete distress."
Even if you’re an adult or a child who hasn’t had an anaphylactic reaction, knowing it is a possibility causes huge amounts of stress.
"Worrying about something can often be worse than actually having to deal with it because it never leaves your side," adds Tanya. "You’re in a constant state of hypervigilance but trying to lead a normal life because the last thing you ever want to do is to actually become someone who micromanages everything as that’s no way to live either."
Part of the problem is that there are not enough trained allergists in this country, the charity says. GP training in allergies is also patchy, so while some patients and their families get the support they need, others are left to cope on their own.
"We know from our supporters that many people with food allergies feel they are forgotten and alone," says Tanya. "They find it hard to get the care and support they need and, in some cases, to have their condition taken seriously. This has to change."
Despite the growing number of people with a food allergy, allergy remains a Cinderella service in the NHS; there has been little attention, importance and investment given to NHS allergy services despite a number of reports since 2003 by allergy experts and MPs calling for better care for people with allergic disease.
"Many GPs receive no training in allergies which can be complex conditions. There is also a shortage of allergy specialists in the UK and allergy training. As a result, the care people with allergies receive is at best patchy, and at worst has led to avoidable deaths. Without greater priority given to allergies, these problems will continue and sadly more lives will be lost unnecessarily," adds Tanya.
To find out more about Natasha’s Army (to receive regular updates on the work of the Foundation) go to www.narf.org.uk.
- Roberts K, Meiser-Stedman R, Brightwell A, Young J. Parental Anxiety and Posttraumatic Stress Symptoms in Pediatric Food Allergy. J Pediatr Psych 2021; https://doi.org/10.1093/jpepsy/jsab012.
- Baseggio Conrado A, Ierodiakonou D, Gowland MH, et al. Food anaphylaxis in the United Kingdom: analysis of national data, 1998-2018. BMJ 2021;372.
About the Author
Tim McLachlan is Chief Executive of the Natasha Allergy Research Foundation. Contact: email@example.com; @timmclachlanceo