Severe Food Allergies in Primary School

[gila89]

Hi moms! Would love to hear from any of you who have kids with anaphylactic allergies in primary school in London. We are relocating from the US to London and are finding it incredibly difficult to locate a primary school in London (state school or independent) that can accommodate the medical needs of allergic children (for instance, creating a buffer zone during lunch so that they are not exposed to their allergens). It looks like most schools are nut-free, but my kid's anaphylactic allergies extend beyond nuts. I feel completely lost navigating this system and want to ensure my child's safety and inclusion. Would love any recs for primary schools that have experience with this. Thanks!

I don’t have any London specific recommendations but most schools are set up for this. When my daughter was at primary school (state ) she had her own placemat that she’d use to have her lunch on. She had packed lunch so I knew what she had was safe. They’d then always keep her placemat completely clean. She moved to a private through school in year 5 (she’s still there) and they don’t allow packed lunches but the chef has catered for her just fine. When she’s gone on school residentials in the UK I have packed her food and when she’s gone abroad, I’ve packed snacks and she’s either been allowed to buy food herself (or she probably hasn’t really eaten). She has several severe allergies, including anaphalysis to milk.

oh also at primary school (I don’t know about now) there was a photo of her around the school with her allergies marked. In each classroom from memory (she’s 15 now!). The only thing I’d check very carefully is where they keep epipens. Now she’s secondary she she carries her own but I made sure they were accessible before that and not kept in a locked cupboard.

Thank you! The current admissions offer we have is from a private/independent school where they don't have a dining hall, so they would be eating in the classroom. It's a very small school that we are excited about, but eating in the classroom rather than in a dining hall seems like a pending disaster for cross contamination.

Find the school and then you need a discussion with that school about putting a health care plan in place.

My son is now in year 2 and has anaphylaxis allergies to milk, eggs, peanuts, mustard and shellfish. He has an individual care plan in place and have now established a good working relationship with the school. It's not been without issues, as milk is everywhere in an infant school and he is touch sensitive to that. But things like when they have milk for snack, my son's table was a designated water table. We always help on school trips/discos etc, we chose an infant school set up so it was smaller, and all the staff know who my son is. The school do allergy training every September and use my trainer epipens to practice. My son knows only ever to eat the food I provide for him. It's a team effort, and you need to find a school you trust enough to care for your child (which I know is very hard!)

This is a nightmare for parents, and they worry a lot, and I am not surprised. Any school at all should be able to put things in place though. Legally they are required to, as long as the restrictions you ask for are coming from a reliable medical professional.

I have worked in many state schools, mainstream and special schools, and in most schools there are children who have epipens. As it happens, not in my current one! Children have a host of different needs and diagnosis now, which are often controversial, contradictory and confusing, However, anaphylactic allergies, and diabetes, are both in a class apart from all other SEND. Lists and photos of affected children are widely available to all staff at all times, all staff know where the pens/ treatments are kept, and who is trained to administer it. In some special schools, all staff are trained to administer epipens.

Nuts are banned from my current school, even though no child or adult present is known to have a nut allergy.

In cases where severe allergies are known, rooms and areas and procedures are put in place to keep the individual safe

It has been drummed into me so hard that I don't eat peanut butter even at home during term time! It is a holiday treat only.

( and I am not being rude or doubting you saying information has to come from a reliable medical professional, we have in the past been asked to make adjustments instructed by some very weird alternative practitioners ( a later start on days when the weather is changing - school bus to not go above a certain speed - child's desk to always face East, of course, those infernal Iren syndrome doodas, and so on........ and those were ignored)

Is it a big school? Would you mind sharing how they strategize around lunch? Is he seated in an allergy table or around friends who don't eat his allergens?

Thank you for this helpful response. I am surprised and disappointed to read that anaphylaxis training is not commonly school wide. Given the nature of anaphylaxis even a very short delay in administering the EpiPen can result in death.

I'd love to hear your input on what the school we might enroll in has proposed. It's a very small independent school in London. They seem very willing to adjust, but the fact that children will be eating milk products in the classroom rather than a lunch hall seems problematic to me.

Since you have experience with schools and allergies what do you make of it? Here is what they wrote:

"Children eat their lunch in their classrooms. The desks are cleared, cleaned and set up for the lunch session by a team of lunchtime assistants who are present to ensure children are behaving and eating properly. They would be responsible for ensuring that xxx was safe. Many children do bring yoghurt and cheese for lunch so we would have to, on a daily basis, check lunch boxes and seat xxxx appropriately. The school is thoroughly cleaned every afternoon, including wiping of all surfaces and handrails on the stairs etc. Children wash their hands both before and after lunch. We would certainly do our utmost to protect xxxxx and put protocol in place to do so, and given the small size of the school, we are in a good position to be able to manage his needs."

I’m not sure what buffer you’re asking for. would it be a problem for your child to be sat next to someone eating dairy products? If so they might not be able to sit with their friends. Would an allergen table be helpful or would you feel that is unfair for him?

Yes, certainly, it's a recipe for disaster for a child allergic to milk to sit directly next to other children who eat dairy products. Children are messy eaters and there is often not much personal space in these settings. The tiniest splash of yogurt that accidentally cross contaminates his lunch, or a crumb of grated cheese that will accidentally be flicked into his plate would result in anaphylaxis. This is no different than a child allergic to peanuts sitting next to another child eating roasted peanuts. Many schools have buffer zones wherein an allergic child is sitting between the lunch assistant/aide and another child who isn't consuming his allergens, or something along these lines. Or even more inclusive, classrooms implement a rotating "lunch friend" calendar where every day of the week 2 different children bring allergen free lunches so that they can sit on either side of the allergic child. Other classrooms opt to ban foods, or do a soft ban (for instance asking pupils not to bring in allergenic foods that can splash or make a mess, like grated cheese and yoghurt). There are many solutions it's just a matter of willing to strategize to keep the child safe and included.

We have:
Annual anaphylaxis training for all staff which includes epipen training using the ‘dummy’ pens. Delivered by school nurse team or by SLT who has had training to train iyswim.
Separate table in dining hall that has its own bucket and cloths not used for other tables to clean (this is the responsibility of catering staff, lunchtime supervisors know to only use this bucket). The child does not sit separately, they can have 3 friends with them, as long as allergens not present in school meal or lunchbox - so the friends tend to rotate daily.
Staffroom has a board with child’s photo and allergens. All staff are made aware including supply if in their class.
Epipens kept in an unlocked cupboard in an area next to the Key Stage classrooms. This is because classes sometimes change rooms so epipen needs to be accessible. Cupboard is clearly marked.
Epipen on risk assessment for trips. It always comes with us. We would go back for it if forgottten or a staff member from school would drive it to us. (It is never forgotten!).
Trips and residentials, usually packed lunch, so usual rules and procedures apply. Children could bring their own box of portable foods to a residential although a lot of work goes into ensuring trip caterers follow procedure, which they have always been fine with. We take child’s food ‘just in case’ though.
Cake sales etc, our parents are brilliant at not sending in food with nuts. If any appear we remove them and give back to the parent - no one has ever complained. The allergen free table is separate from the other tables and we have parents/staff who will label the food so we know what is in it.
We make sure we have a dairy free alternative if doing a food based activity, whether that is Cookery or something like Chocolate Bingo for charity.

Erm…..I think that’s it! [ grin]There may be more depending on allergen, but no child would be made to feel different or left out because of an allergy.
Bog standard state primary, medium sized.

You'd prob be better off in a state school with a lunch hall as they have more legal obligations with health and learning plans. You've chosen a private school who are basically telling you like it or lump it. My kids go to a small (one form entry) primary school and have dealt extremely well with severe allergies.

That's incredibly helpful, thank you so much for the thorough breakdown. Is it not very common for children at Year 2 and on to self carry their EpiPens? Depending on the size of the school I'd imagine that the playground or the art room may not be in close proximity to the EpiPen.

Oh wow, I had a totally different read on what they wrote, I thought that they are trying to be as accommodating as possible and are willing to adjust to our needs and strategize together. Maybe it's my US ears and their UK tone 😅I wish that we could find a spot in a state school but it's incredibly hard to do so prior to our arrival (the local authority won't assign us to a school without a London address, and if we wait until we move in to enroll him it might take weeks into the school year for them to find a place for us). Would you mind saying more about the difference between legal obligations on health plans from State schools vs Independent? Also if you don't mind sharing -- what are the specifics of your kids' health care plan? Do they sit in an allergen free table?

I would agree with a PP who said a small indie will not be as well set up for this as a larger school. I assume the small school doesn’t even provide catered food? This means there will be no dedicated catering or food staff who will deal with allergies day in, day out as part of their job, with appropriate training

IME there are pictures of children who need epipens dotted around the school (noticeably in the dining hall and office). Epipens go everywhere, along with the asthma inhalers - so out to the sports field for PE, on school trips etc.

My youngest son has severe allergies (nuts, peanuts, eggs, milk) It might be worth taking the time to contact the NHS school nurses that cover the area you are planning to move to. They provided the school training in using epipens, managing my son’s allergies around the needs of other children and in-depth advice for the school kitchen. I would provide some of the commercial food he could eat direct to the kitchen who kept its separately and followed UK food laws. He had epipens kept in a secure box in his classroom. This box and his allocated adult support went with him when he moved round the school. There was a spare set in the school office. The school office had his details and what to look out for clearly visible for staff and they had my permission to call an ambulance before calling me. Another child was at the same school as the playing field was big enough to allow a HEMS air ambulance to land for the child with an even nastier reaction to allergens than my son. It was a state run three form entry school not a private one. TBH the health care and support there was better.

The UK has something called the Food Standards Agency. They make the H&S executive look like pussycats. Anyone working to provide food to the public HAS to comply with ‘Natalies Law’ which helps protect people with severe allergies by reducing the risks of cross contamination. A kitchen will have procedures in place to manage allergens such as storage procedures, designated kitchen kits (normally it’s a lilac purple kitchen set kept in a sealed box that is ONLY used to prep for allergies and carefully cleaned and washed) If extra measures are advised by school nurses most school cooks and school staff will do their very best to comply.

@gila89 it's very much situation dependent. We wouldn't have allergens on the playground (milk and fruit time in ks1 is in class, for instancr). Rule we follow is any further than playground and epipen comes with us i. e our school field is large so we take it with us.
We assess each medical need on an individual basis and tailor the health care plan accordingly.

At one point, my DS with the more severe allergies and a coach-load of other kids were about to set off for a week-long trip in the welsh mountains. DP got school staff to check the epipen box and found that it was empty.
On another occasion DS went to the medical room as he was having a reaction. school nurse administered antihistamine, then left him unattended.
The school also said that staff were not required to administer epipen - it was up to the individual staff member. Fortunately the class teachers we had were sane, and said they'd do it if needed.
The school tries - it's generally nut-free and has an "approved list" of snacks, but in short, I think everyone with severe allergies has a few hair-raising moments.
Might be worth being aware that in the UK some ingredients don't have to be labelled. some are legally required to be labelled but it's a short list. Our main issue is that lupin (a bean in the legume family) is often added to wheat flour, so it can appear in all kinds of things, without being on the listed ingredients.

Not London, but my nephew is allergic to egg and milk. He is so sensitive to egg that sadly he's suffered 3 cardiac arrests in the past 7 years. Luckily for us, he's a happy and healthy little boy.

I think age is key here. My nephew is old enough now to know he cannot "share" things from other people's lunchboxes, whereas when he was little and sat on a large table at lunch, and other kids would offer to share their sweets and chocolates which is where the problems used to occur. Now he knows to say no and sticks to his own lunch. He also knows how to check the content of foods and understands that if it says "trace of" then not to touch it. There is a water table for when milk is being served.

School have been brilliant and I know my sister has been really happy with the plans in place. Its been in cafes/restaurants in the UK where weve sometimes been caught out, such as chicken nuggets being coated in egg to seal the breadcrumbs. Or a menu changing from say a vegan menu to then specifically a coconut icecream, which hes allergic to. So we had eaten at the same restaurant for years, but unbeknown to us they had changed the menu and the icecream had change. Totally our fault for not checking, so one to be mindful of.

@notquitetonedeaf Lupin is one of the top 14 allergens required to be labelled by law in the UK.

Concur, this is a legal requirement.
That said it can be harder to manage with some foods such as homemade by others or if a kitchen is not so hot on allergen awareness as a rough rule, less people are aware of this one.

This is the UKs severe allergy support charity. They provide guidance on making schools safer for those with life threatening allergies. https://www.anaphylaxis.org.uk/