The story of Benedict Blythe and his parent’s campaign to protect pupils with allergies at school
Please note, this article tackles difficult and upsetting information, including the death of a child from anaphylaxis.
In late 2022, The Allergy Team was contacted by Helen Blythe whose son Benedict had died following an allergic reaction at school. Benedict’s story is heart-breaking and speaks to our worst fears as parents and carers of children with allergies, but Helen hopes that by telling it she can bring about lasting change. We are proud to be working with Helen and the Benedict Blythe Foundation to campaign to improve allergy awareness and training in schools.
Benedict was just 5 years old when he died following an allergic reaction at school.
On the morning of 1st December 2021, he opened his advent calendar and happily went off to class, a few hours later he collapsed and died from anaphylaxis. He was allergic to dairy, eggs, peanuts, sesame and chickpeas.
Helen and her husband Pete are still waiting for an inquest to shed light on how and why their son died, but they say the horrifying speed with which he became ill demonstrates the need for pupils with allergies to be better protected at school. They are calling for new legislation to make this happen, including mandatory allergy and anaphylaxis training, statutory allergy policies, individual healthcare plans for all children with allergies, and spare adrenaline pens in every school.
Benedict had a brilliant mind and Helen told The Allergy Team she was determined he should have a positive experience at school, despite his multiple allergies and severe asthma:
“I can’t describe the impact on our family. Losing Benedict has shaken our whole reality. Most of the time Benedict’s allergies were a looming spectre in the background. I had a fierce internal narrative that this is something that is risky, but that it’s something we could manage. That he should be able to live a normal life, even if we have to work a bit harder to achieve it. Benedict knew that he needed to manage his own risks, but we didn’t want him to think of them as scary. It was always scarier for us than it was for him.’
Campaigning for change
Helen and Pete have set up the Benedict Blythe Foundation in their son’s memory. The Foundation has published an Action Paper, which is supported by The Allergy Team and other allergy experts, calling for significant changes. In its Forward, Helen explains:
“Children with allergies deserve to attend school knowing the that the staff have the right processes, knowledge and education, and equipment in place to protect them.”
The Foundation has the following asks:
1. Making it mandatory for all schools:
– To have an allergy policy, including an anaphylaxis plan
– For every pupil with a food allergy to have an Individual Healthcare Plan and anaphylaxis action plan. These should be completed (and updated) regularly and collaboratively by the child, parents/carers and school staff
– To hold spare adrenaline pens that are in-date
– To implement training for school staff and teachers on allergies and anaphylaxis and a whole school allergy awareness approach
2. Government funding for the additional cost to schools for adrenaline pens and training
3. DfE/FSA commissioned research into the effectiveness of approaches and interventions to optimise the preparedness of schools for preventing allergic reactions and managing anaphylaxis
4. Adherence to these measures to be checked as part of schools’ assessments by Ofsted
Listen to Helen Blythe and The Allergy Team discussing the need for safer schools on BBC radio
How safe are our schools?
The Allergy Team works with numerous schools and we see first hand that many of them go to great lengths to ensure pupils with food allergies are as safe as possible and are included in every aspect of school life. But others need to improve. We know this because we speak to parents and carers every day and time and time again they tell us of near-misses and mistakes which led to their children having allergic reactions in school.
We know these incidents impact the well-being of the whole school community. Even a near miss can cause great distress and lead to pupils and staff needing extra support or time off school.
It is simply not good enough to have a handful of staff trained to use an EpiPen, or to dismiss food allergy as a catering issue. But in a recent survey by The Allergy Team, nearly half of school staff (42%) said that they had not been trained in school to recognise and treat an allergic reaction within the last 12 months (1). As the training partner of the Benedict Blythe Foundation, we will continue to work to change this.
There is no time to lose. Leading clinicians have long been warning that pupils with allegies need greater protection (2). One of the country’s leading Consultants in Paediatric Allergy, Professor Adam Fox says:
“Inquests into fatal anaphylaxis at school recurrently highlight the inadequacy of school policies – where food allergy is simply not understood, where adrenaline pens are left to expire and there is no clarity about how to respond to emergency situations. This is not acceptable. There is a clear need for a change in culture around how food allergies are managed in schools. The UK lags behind other countries and children are suffering and even dying as a result. By really educating the whole school community about food allergy we can turn things around.”
Food Allergies in school facts
- Allergy is the most common chronic condition in childhood.
- Up to 8% of children in the UK have a food allergy. On average, most school classes in the UK will have one or two children with food allergies (3).
- Up to 20% of anaphylaxis cases occur within school grounds and of these, one in four occurs in pupils not previously deemed at risk (4&5). Fatal anaphylaxis is extremely rare.
- A US study found that 79% to 83% of severe food allergic reactions occurred in the classroom, not the dining room (6).
- Children with food allergies are twice as likely to be bullied as those without (7).
Important: Helen and Pete Blythe are waiting for a date for the inquest into their son’s death. At this stage, they do not know why Benedict died or fully understand the circumstances or events of that day. While they want to improve understanding of food allergies in schools and training for staff, it would be wrong to suggest any wrongdoing by Benedict’s school until the facts are known.
How you can help
Work is underway to try and improve food allergy management in schools but if you want to support Helen’s campaign, here are some suggestions:
- Sign Helen Blythe’s petition to introduce new requirements to protect students with allergies in school
- Download, read and share the Benedict Blythe Foundation Action Paper
- Email your MP (there’s a template letter here)
- Follow and share the Benedict Blythe Foundation’s campaign using the hashtag #protectpupilswithallergies
If you have found reading this article difficult…
We understand that hearing or reading about traumatic events related to allergy can be extremely distressing. Clinical Psychologist Dr Karen Murphy has shared some great tips to support families when food allergy is in the headlines, we hope you find this useful.
We will also be holding a Q&A with Professor Adam Fox on Wednesday 19th July at 8pm. He will be able to take questions about this and support us understand the context, and reassure us that fatal anaphylaxis is very rare.
- The Allergy Team’s survey was completed by 224 members of school staff. The children in their care ranged from pre-school age to sixth formers. 131 members of staff (58%) said they had been trained in school to recognise and treat an allergic reaction within the last 12 months. 17 (7.6%) said they had been trained in school to recognise and treat an allergic reaction over 3 years ago. 13 said they had never been trained in school to recognise and treat an allergic reaction.
- “There remains a clear need for a change in culture around how allergies are managed in school. While progress has been made in Australia and in the USA, we continue to lag behind: children are suffering and even dying as a result. We believe that further action is required.” Keeping food allergic children safe in our schools – Time for urgent action. Paul J Turner et al.
- Spare Pens in Schools
- Anaphylaxis in schools: results of the EPIPEN4SCHOOLS survey combined analysis.
- Increase in anaphylaxis-related hospitalizations but no increase in fatalities: an analysis of United Kingdom national anaphylaxis data, 1992-2012.
- Role of Food Allergy Education: Measuring Teacher Knowledge, Attitudes and Beliefs.
- Comparison of bullying of food-allergic versus healthy schoolchildren in Italy.