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Hands up: who had the jitters before their child started school? I did. Would he enjoy it? Would he make friends? Would the staff teach him well? Would he accidentally eat peanut? Would he have a severe allergic reaction? Would the staff spot it and administer the EpiPen in time?

As the parent of a child with a life threatening food allergy, you have all the regular starting school nerves, with a few extras thrown in. Whilst location and OFSTED ratings might be important, top of your wish list is a school that is allergy savvy. Reaction is the 4th R your child can well do without.

My son (D) started Reception class in September 2014. He had anaphylaxis (a life threatening allergic reaction) to peanut aged 20 months, which resulted in a week in hospital, with four days in intensive care. Since diagnosis, it feels like we have, slowly but surely, been getting more and more of a grip on his allergy: building confidence at playgroups, playdates and parties. Although he went to nursery, for me, school seemed a much more daunting prospect. He was leaving the safe bubble of his preschool room, where everyone’s food was prepared by the nursery cook, to run among 300 other children in the playground, many of whom have packed lunches, who could offer him a potentially lethal snack they had in their pocket.

Despite my initial worries, our first year went very smoothly. Here are the measures we put in place with our school, and the unexpected challenges which cropped up:

Doing your homework before school starts

Before we started, an allergy nurse impressed on me the importance of parents working with the school. So, at the end of the summer term before he started, we met with my son’s new teachers and the head of the kitchen team. This gave us the opportunity to fully explain his allergies and to learn about the safeguarding procedures the school would put in place.

On top of labelling uniform, my holiday homework included:

  • Obtaining an up-to-date allergic reaction action plan from the hospital.
  • Putting together two sets of emergency medication (for D, this included an EpiPen, inhaler and spacer and antihistamine). One set would be kept in D’s classroom, the other in the staff room.
  • Making a note of the various expiry dates, so I could provide replacements when needed.

I also followed a fellow nut mum’s advice of drumming into D two key rules: 1. only eat your own food and 2. tell a teacher if you ever feel unwell. We did this by “playing school”, with me pretending to be a friend offering round sweets and him saying “no thank you”. Despite this, I know that, at the point he started Reception, we were not 100% there. At one party, I had to pry a piece of cake out of his hand, whilst being told (indignantly) that it was fine for him, as it wasn’t from a friend, “Batman gave it to me”. At another, when he had to turn down chocolate, I was again mean mummy in his eyes, as he HAD checked with his (4-year-old) friend, who had promised it didn’t have nuts in. These incidents make me very grateful that our school has a nut free policy and lunchtime assistants who police the “no swaps” rule.

Nut free policy

Opinions differ on whether schools should be nut free. My view is that a nut ban is appropriate in a primary school where a pupil has a life threatening allergy. Yes, the real world isn’t nut free: but he wouldn’t be left to fend for himself in the real world aged 4. While it may not be practical to ban all allergens, if the school can safeguard at least some allergic children, that must be a good thing.

Word of warning: if your school has a nut free policy, make sure it’s publicised, for example in the school newsletter. As well as packed lunches, the nut free policy needs to cover things like coffee mornings and cake sales.

Allergy training and action plan

You need to know that ALL school staff know about your child’s allergy (and they would be able to recognise an allergic reaction, locate his medical kit, administer the EpiPen and call an ambulance).

For our school, the school nurse trains all staff annually on how to deal with an anaphylaxis emergency. When my son started, she ensured the procedures followed the latest version of his allergic reaction action plan.

School dinners

Before starting school, I assumed D would have packed lunches. However, he has been able to have school dinners. Our council has a “no nuts” policy and the school kitchen team double check the ingredients and for “may contain nuts” warnings. The school’s other safeguarding measures include:

  • All lunchtime staff know who D is (his photo is on the kitchen wall, with details of his allergies).
  • The lunchtime staff wipe down his table before he sits down to eat.
  • D goes first in the lunch queue, which reduces the cross contamination risk if one of the meals that day is something that “may contain nuts”.
  • A “no swaps” rule.

Safe treats box

Birthdays, Halloween, Christmas, Easter, end of term, someone’s been on holiday, someone’s mum has been baking… in the first term especially it seemed that every other day the children would emerge with treats. A “safe treats box” has worked really well for us: whenever there are class treats, a teacher gives D a nut free alternative from his box.

Chocolate coins in Christmas cards were a new one on me. D comes out of school with a card, opens it up and out pops a coin. Again, I’m mean mummy for taking it off him. He was even less impressed when Father Christmas himself was handing out chocolate “may contain nuts” coins at the Christmas Fair (“doesn’t he know I can’t eat nuts?”). Likewise, lots of children emerge from the classroom and grab a snack from their mums. This has all got easier as the year has gone on and I’ve been able to let the mums know about D’s nut allergy. Stress reducing tip: have some safe goodies in your own bag!

Unexpected dangers in the classroom

So, the school staff are allergy aware and EpiPen trained, there’s a nut free policy and the school dinners are nut safe. Where are the unexpected risk areas? These are the ones we’ve encountered so far:

  • Water fountains – D has his own labelled water bottle, which hopefully another child won’t use by mistake.
  • The home corner and junk modelling – school have made sure there are no packets from nutty foods.
  • Musical instruments – this hasn’t arisen yet, but we’ve discussed with school that, when it does, D would need his own recorder.
  • Cookery activities – each time D’s class do an activity involving food, his teacher runs through the ingredients with me beforehand.

School trips

Whenever D goes out of school (for example, to a church service or on a trip), his teachers carry a set of his meds. For added peace of mind, I have so far been able to volunteer as a parent helper on school trips (however, he might not be so keen for me to do this as he gets older). One of the bonuses of free school meals is that, for school trips, his classmates all have nut free packed lunches prepared by the school kitchen.

Out-of-school clubs

One aspect I’ve found challenging is out-of-school activities. D has been able to attend a holiday football course, which was run by a teacher. However, I tend to volunteer as a helper at events such as after school film shows or end of term parties, which are run by fellow parents. If his dad or I weren’t available to help out, this is one thing he’d have to miss out on.

End of year report

Preparing for starting school took extra leg work behind the scenes. To begin with, you have to think through all the risk areas and organise medical kits, action plans, safe treats boxes. Then, throughout the year, you are liaising with the school and going along (when you can) to after school activities and the various trips. However, I can vouch that there are confidence-inspiring schools out there. In some ways, our first year has been better than expected: I never thought D would have school lunches or that I would be able to drop him off at a holiday club.

In fact, the biggest challenges have been the social life that comes alongside school: playdates and parties. Suddenly your child’s social circle expands and you’re faced with taking a deep breath and saying “he’d love to come … and that date sounds fine … but I just need to let you know about his peanut allergy … and how are you with using an EpiPen?”. I’m hoping these occasions will become less stressful too, as he gets older and knows to say no thank you if someone offers him food. Even if that someone is Batman.

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Today, Caroline, founder of Nut Free Chocolate People, shares how her son’s nut allergy diagnosis led to her family opting for home schooling. While acknowledging it’s not for everyone, here she talks about how home educating has been successful for her two boys…

Unaware of the option to do anything other than send our children to school, we really struggled with the lack of flexibility our primary school had with our medical conditions.  The response to my son’s medical confirmation of a nut allergy was disbelief.  We already had a note on his file of a suspected nut allergy, but a further allergic reaction had led to us seeking medical confirmation.  I duly informed the head teacher that his nut allergy had been confirmed and his response was “We won’t believe it until we have a note from your GP”.

Why?  Why would any parent make up a severe allergy? Why wouldn’t a head teacher believe them?  This set the tone for all of our ‘discussions’ with the school.  Sadly I use inverted commas due to the fact that there were no discussions.  They just didn’t want to know.  We had other medical issues which resulted in the involvement of the school attendance officer, who to her credit tried her best, but in her own words she had no jurisdiction with the school, so any suggestions she made could be ignored.   And it was.  I look back and wonder why we banged our heads against this brick wall for so long.

Discovering home schooling

It was my son who suggested we tried Home Schooling (which tends to be the American term, we certainly did not replicate school at home).  I had no idea it was a legal option & spent a weekend reading books & researching the possibility of doing this.  As a parent with a full time job it would mean big changes in our household, but I asked myself the question ‘what is more important than my children’s happiness, health & education?’

The answer became more obvious with each chapter I read.  We would have total freedom from the constraints of the rigidity of the school system.

If the boys were unable to work from 9 to 3 then so what?  We could work from 2 to 8 if we wanted!  Monday to Friday term time only? No!  All year round if we wanted to.  Without a national curriculum to adhere to our educational journey could go wherever it took us (and some fabulous journeys we had too, together, me sometimes not knowing anything about the subject matter so learning all about it with the boys).

Taking the leap

The following week both boys were de-registered from school and our new life together began.  I read that home educating is like jumping off a cliff and finding you have wings.  Well we took that jump and gosh did we fly!  I won’t say it was without its problems as I’d be lying.  We had to get used to spending time together again, something we had never really done except during holidays.  I’d worked full time since my youngest son was six weeks old, so it was a learning curve.  There were days we’d all have lunch in separate rooms just to have a break from each other, but gradually we found that we all actually liked each other & enjoyed spending time together.

There was a huge range of activities open to us, and sometimes we had to watch that we didn’t go out every single day as that soon got very tiring; we went to socialising activities, study groups, activities of all types, educational visits and also set up a few of our own groups.  The activities are too numerous to mention but included French sessions, writing workshops, science sessions, rock climbing, ice skating, gymnastics, animation classes, teen group, drama & music groups.  We had meetings with other home educators in five different local towns and cities and developed a network of parents who supported each other along with children who learned and played together.  We had Not Back to School picnics, Christmas parties, Easter and summer get togethers.

The education of each child was personal to them and we quickly found the best way for them to learn. Like most home educators who have been schooled we started following a timetable & kept a close eye on the national curriculum but as we grew in confidence these were cast aside, and something very interesting happened.  The boys wanted to learn all year round, they didn’t want to stop at 3 o’clock, for three weeks at Christmas or six weeks in the summer. And they started finding pleasure in reading again.  Where once they hated reading the school novel that had been chosen for them, they devoured the books that interested them, skipping way beyond their ‘reading year’ because it didn’t matter anymore.  And the greatest thing was the worry of someone else not taking our allergy concerns seriously no longer applied.  We had far greater control over this.  If we were out at a group meeting and someone had nuts, or peanut butter sandwiches I could talk direct to mum (usually but not always) and we would deal with it together.  The same goes for bullying; there’s very little of it in home ed groups as 99% of the time parents are present.  Bullying doesn’t happen so much when mums and dads are on hand.

Involving the whole family

An added bonus for us was that my elderly parents came to live near us in the last few years of their lives.  Their worry that they would be one more chore for me to do along with teaching the boys soon evaporated when we took them along to groups with us!  The joy on my 88 year old dad’s face when he came with us to a planetarium visit stays with me to this day.  He had a wonderful time, and told everyone that he could tell that you are never too old to learn, and that he had learned new things that day.  The boys also had the chance to share a very special day out with their grandparents when we went to the 65th anniversary of the World War II Dambusters mission; where their granddad was interviewed by local TV about his time in the RAF.  My mum and dad loved being involved in the boys’ education and could talk to them about their joint experiences.  I am so very grateful we all had that pleasure. My husband also got involved with the boys’ education and ran workshops teaching skills to groups of students.  He came to meetings, educational activities & shared stories with other home educating families.

Exams and qualifications

People always ask me about exams, so I’ll just include a little about this aspect. There are lots of options available if you decide to home educate.  Some people put their children back into school for exams, some go to college, some do distance learning & some have managed well without any formal exams or qualifications.  We elected not to do any as the exam system didn’t suit our circumstances.  We decided not to ‘hot house’ the boys, and decided together when we felt they were ready for an academic challenge.  They both chose to study with the Open University from about 14 and took several courses (in different subjects) which resulted in them having a level four qualification at 16/17.  (equal to a completed first years study at university).  We researched courses & universities & found one they were interested in (different subjects).  We went to open days and talked to the appropriate faculty staff at the university who were delighted to extend unconditional offers.  The attitude  was that the boys were used to self motivated study & were used to working at degree level.   I believe one of the Oxbridge unis also accepted a home educated child without formal qualifications fairly recently, so instead of being a stumbling block it can actually set your child apart, make them memorable & pull them out of the need to have goodness knows how many GCSEs and A levels to be even considered these days.

Of course I realise this path isn’t for everyone, but neither is school. Sometimes we try to make something fit when it just won’t.  And sometimes having options is the best situation to be in.

The home educating family

For my part I met people I would never have come into contact with. There is no typical Home Educating family, nor is there a typical reason for deciding to home educate.  Reasons include medical, religious, lifestyle, problems with bullying, parents disagreeing with the rigidity of the national curriculum, and just that school doesn’t suit their child’s needs. We encountered professional couples, single stay-at-home parents and families from both ends of the financial spectrum. Sometimes all they had in common was wanting the best for their child.

Some educated partially in the school system and partially home educated, some had been in the school system and some wouldn’t touch the system with a barge pole.  It certainly provided a broad view of society to all of us, and one, I think, benefited the children too.  They are polite, considerate, sociable and self motivated young men I am proud of, and it was an honour and a privilege to be able to share such a special time with them.

Someone once said to me that you don’t stop being a home educator when the children ‘finish’ their education, and I think it’s true.  You realise that education really is for life, for sharing & for the whole journey.

 

 

Thanks very much for sharing your family’s story, Caroline!

Contact details

Nut Free Chocolate People

Email: caroline@nutfreechocolatepeople.com

Facebook: https://www.facebook.com/NutFreeChocolatePeople

Twitter: @NutFreeChocolat

 

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Great news! The Just Love Food Company has launched a fantastic new product: individually wrapped cupcakes.

The cupcakes were a big hit with my children on the taste front and, from my perspective, they are ideal for taking to my son’s friends’ parties and including in his safe treats box for school.

The Just Love Food Company’s nut safe promise

As a family, we are big fans of the Just Love Food Company’s cakes for birthdays and special occasions. They made my son a fantastic bespoke Spiderman cake for his birthday last year and I’ve just bought one of their “decorate your own” cakes for my daughter’s birthday this week.

If you haven’t already heard of the brand, I can’t recommend them highly enough. Founded by Mike and Karen Woods in 2010, two of the couple’s three children have nut allergies (read their story here). They therefore understand first hand what shopping for a nut allergic child involves and, specifically, the difficulties nut allergic children can face joining in with food-centred social occasions such as birthday parties.

The company makes a nut safe promise, explaining:

“We know that even the smallest trace of nut contamination can have a detrimental effect, so whilst we can never make a 100% guarantee (although we try 100% of the time), we have taken every possible step to make sure they are the safest on the market and safer than making it at home.”

As Mike sums it up:

“My children eat these cakes and I wouldn’t want to put my own children at risk.”

The company is, I believe, currently the only manufacturer of nut free cakes in the UK which are sold in the supermarkets. Their celebration cakes are available in Asda, Sainsburys, Tesco and Nisa.

The new cupcake range

As I’ve written before, since diagnosis, my go to cake brands are the Just Love Food Company (for birthday cakes) and, for small cakes, I used to buy Fabulous Bakin Boys cupcakes and muffins. That all changed last October, when Fabulous Bakin Boys announced their products would no longer be nut free.

Since my son started school last September, I’ve been amazed at the speed he has rattled through the contents of his safe treats box. Someone’s birthday? Their mum sends in cake and D instead has a treat out of his safe box. Halloween. The same. Ditto Christmas. The safe treats box idea has has worked well for us. However, it seems far more inclusive if he can enjoy a similar treat to his friends, where possible. 50 children munching cake and the boy with a peanut allergy with some chocolate buttons? Although he might enjoy his treat, he’d stand out less if he could have a cake too.

Step forward the Just Love Food Company with their new cupcake range. The cupcakes are £20 for 48 (which includes shipping costs) and are currently available directly via their website. For the ingredients list, see below.

The company are selling the cakes in quantities of 48 (4 boxes of 12), to keep the shipping costs as economical as possible. If 48 seems a daunting prospect, just to say: they are suitable for home freezing. (In fact, my son’s teacher has put a few in the school freezer ready for the next celebration day!)

If you would like to order, please contact the Just Love Food Company via their website.

Fingers crossed we see them on the supermarket shelves soon too!

Ingredients List for Individually Wrapped Cupcakes

SPONGE: Sugar, Free Range Egg, Wheat Flour(Calcium Carbonate, Iron, Niacin, Thiamin), Vegetable Fat: Palm Oil, Rapeseed Oil;  Water, Dried Skimmed Milk, Raising Agents: (Disodium Diphosphate, Sodium  Hydrogen Carbonate Wheat Flour); Humectant: Glycerine; Whey Powder (Milk), Salt, Potassium Sorbate, Natural Flavouring(Vanilla).

SWEET FILLING: Sugar, Margarine [Vegetable Oil (Palm, Palm Kernel, Rapeseed), Water, Salt,  Humectant (Glycerine), Natural Flavouring (Vanilla).

ICED SUGAR DISC: Icing Sugar, Sugar Gum [Glucose, Vegetable Oil (Palm, Rapeseed), Water, Sugar, Humectant (Glycerine), Stabiliser (Gum Tragacanth)],

 

Allergy Advice:

For Allergens including cereals containing gluten see ingredients in bold

Due to Manufacturing methods during production, this product may contain traces of Soya

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Are you confident that the staff at your child’s school could (and would) deal with an anaphylaxis emergency?

I was. The headteacher has assured me that everyone is trained in how to spot an allergic reaction and how to administer an EpiPen. In fact, the school nurse came in to give refresher EpiPen training to everyone in January. However, in light of what I have now learned about one school catering company, I will be double checking that “everyone” means everyone and there aren’t any external staff responsible for my son’s well being at lunchtimes.

Last October, I heard from an Oxfordshire nut mum whose children went to a school where Caterlink provided the school dinners. She was appalled to discover that Caterlink’s Nut Allergy Guidelines stated that staff should “not administer medication under any circumstances”:

Caterlink nut allergy guidelines emergency action

Indeed, Caterlink’s Allergy and Special Diet Guide (at page 15) advises staff “You could save a life”:

Caterlink

The “What to do in an emergency” section (at page 40) reiterates the message: do not administer medication under any circumstances.

Our nut mum contacted Caterlink, setting out her concerns (for full details, see Do your school caterers know their auto-injectors from their antidotes?).

The company has responded that:

“Caterlink staff are not required (by law) to administer or store Epi-pens in the dining room. There are also many variables of an allergic reaction and I do not wish for Caterlink staff to second guess when or if they should be administering an auto-injector.”

This has been challenged by our nut mum, who believes a policy that reads “staff are not obliged to give emergency medication”, would be an improvement on the existing “do not administer medication under any circumstances”. Pointing out that if Caterlink are concerned staff do not have the knowledge to deal with an anaphylaxis emergency and would be ‘second guessing’, then a well researched policy would be a step in the right direction.

The other points she raised have been acknowledged by the company, who pledge to make changes ‘in line with the upcoming Food Information Regulations’. Although they give no indication of what these changes will be or when they will be made.

Our nut mum is not impressed:

“Caterlink do not seem to realise the huge responsibility they have in keeping allergic children safe and the part a good policy and good attitude can play in this. It would be a simple thing to get the right information to staff and give them the confidence to act in an emergency, yet it appears to be low down on Caterlink’s list of priorities.”

You would hope that, in a life threatening emergency situation, people would do whatever they could to save a life. However, you only have to think of the death of Emma Sloan, after a pharmacist refused to dispense an EpiPen without a prescription, to realise that, for some, written rules and regulations will hold sway.

If your child’s school dinners are provided by Caterlink and you agree that it would be preferable for the guidelines to state that “staff are not obliged to give emergency medication” (rather than “do not administer medication under any circumstances”) then you might also want to raise this with your school and the caterer. That way, if there was an anaphylaxis emergency and only a member of the catering team was available to assist, there wouldn’t be a nagging doubt at the back of their minds that giving the EpiPen was against policy.

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That’s the question posed by an Oxfordshire nut mum after she took a closer look at Caterlink’s Nut Allergy Guidelines. Here she tells us what she discovered.

“With the new 2014 school year came a new challenge, whether free meals for every child in reception, year 1 and year 2 would include nut allergic children. My twin boys, one with a tree nut allergy, one without, often ask to try school dinners, so I decided to find out about the new caterer’s nut policy.

After a failed attempt to obtain the policy from school, I contacted Caterlink direct and they sent me their Nut Allergy Guidelines for staff. I wasn’t especially surprised to see the meals were not guaranteed nut free, making it an easy decision to stick with packed lunch.

Screen shot Caterlink 6.10.14 nut policy

However, what I read in the emergency section so shocked me I knew it was only fair that other parents were made aware of it.

Caterlink, featured on BBC’s The One Show as the new school meals service was rolled out and supporter of the School Food Plan, are on the front line at the most dangerous time of day for food allergic school children. The company is a big player in the UK school and university meals business, so you’d expect them to know a thing or two about food allergies.

Yet there on the second line of their emergency advice it read ‘an antidote to administer to known nut allergy sufferers’. A term not usually associated with adrenaline auto-injectors such as Epipen – these guidelines were clearly not well researched. Worse was to come, in bold and underlined it read “do not administer medication under any circumstances”. So even if a first aider can’t be found – even if a 999 operator is telling them to – even if a child is dying and they are the only one there? A chilling thought. You would hope if a child’s life was in danger any one would use the Epipen, trained or otherwise, that’s what it is there for.

At my son’s school it’s unlikely Caterlink staff would be called on in an emergency, but the fact that this policy exists and is given such prominence was a real concern. The calculations of an insurance company may lurk behind it, but it’s an appalling position to put staff in. Signed by Managing Director, Neil Fuller, the advice ends “Remember, death from an allergic reaction to food can take place in less than 10 minutes”.

Screen shot Caterlink 6.10.14 emergency action

There were other problems; no mention of laying the person down, or sitting them up if they can’t breathe; ensuring they stay put until the ambulance arrives, reducing the risk of heart attack; no clear explanations of the differences between mild and serious signs of a reaction.

Outlining my concerns to Caterlink, I asked them to urgently review their emergency advice, suggesting 7 days, and to let me know what changes had been made. I also forwarded an example of a good policy found on the internet; St Paul’s Girls’ School’s policy shows a good understanding of nut allergies and anaphylaxis and makes clear an auto-injector should be used straight away. It doesn’t prohibit anyone from using it. Caterlink emailed back to say my comments had been passed on to the relevant people and I’ve heard nothing since.

Alerted to the danger of assuming everyone would be well informed about allergies in schools, I started asking more questions. My son told me pupils don’t wash their hands before lunch and everyone sits where they liked, including next to those eating peanut butter and chocolate spread. He’s unlikely to react to peanuts, but that’s not the case for the other two nut allergic children in his year.

A month into the term I attended the school’s Epipen training. There were no trainer auto-injectors available. Taking my own Epipen trainer into school the next day I discovered that, whilst many teachers had been trained in previous years, this was the first time for my son’s teacher (let me reiterate, that’s a month into school). The school is listening to concerns raised by myself and other mums of allergic children and we anticipate changes.

So please, if you don’t know your school policies, if you don’t know what happens at lunch-time, if you haven’t seen your school’s caterer’s nut policy – make enquiries and challenge anything you wouldn’t allow to happen at home. Schools are about education, but you may find you’ll need to educate your school about allergies.”

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Without wanting to tempt fate, it appears we’ve struck lucky with my son’s new school on the nut allergy front.

D starts reception class in September. We’ve recently been for our initial meeting with his teachers to talk about his allergies. Here’s how we got on…

Nut free school?

When I had a tour of the primary school last December, I was advised that, although the school was nut free, they hadn’t yet needed to impose a “nut ban”, as pupils didn’t tend to bring in nutty foods in their packed lunches. With this in mind, alarm bells went off for me when we received the new starters’ paper work. Although it was school policy that packed lunches should not include fizzy drinks, sweets or crisps, I could see no mention of any nut free policy.

Opinions vary on whether schools should impose nut bans. The Anaphylaxis Campaign website states there are pitfalls with a nut ban approach, namely:

“It would be impossible to provide an absolute nut-free guarantee so the danger is that allergic children may be led into a false sense of security. There is a strong case for arguing that food-allergic children will gain a better awareness of their allergies, and learn avoidance strategies, if they move in an environment where allergens may turn up unexpectedly.”

Another common argument is that, as children can be allergic to so many different things, it would be unworkable to make a school free of all allergens, and it would be unfair to ban nuts when pupils could have life threatening allergies to a range of other foods.

Michael Pistiner discussed the various pros and cons on the AllergyHome blog recently – see “Nut-free”? Points to ponder.

Preparing for the real world

D will have just turned 4 when he starts school. His awareness of his allergy is growing. We’re about to step up our efforts to instill the importance of not sharing food. However, for now, I’m not confident he would turn down the offer of a chocolate biscuit from a friend.

Back in February, I saw the photo of Amelie King with her eyes swelled closed, having touched peanuts in the playground on her first full day at school. Would D fully appreciate the danger if he put his hand in a glob of peanut butter spilled on a school canteen table? I doubt it.

I would therefore feel a lot happier if his primary school was nut free. I do understand the argument about needing to prepare him for the real world but I think this can come later in childhood. When he’s 18, mummy won’t always be there to help him cross a road, but I’d still hold his hand aged 4. The same goes for keeping him safe from nuts.

Impractical and unfair?

Whilst I see the point that it might not be practical to ban all allergens, if a small child has a life threatening food allergy, there is an argument for banning the allergen, whatever it is, at least from that child’s classroom. A Swindon school banned fish from lunchboxes recently, for this reason.

As regards the “fairness” argument, to me, that’s rather like saying to the 10 people on a sinking ship that as there’s only 5 lifejackets, nobody’s getting one. If school can be made safer at least for some allergic children, is that not a good thing? For children with multiple allergies including nuts, wouldn’t many of their parents be glad of a nut ban, so there’s one less potential killer in the midst?

Other safeguarding possibilities

That said, I have heard about some schools that, whilst not having a “nut ban”, they do put effective measures in place to keep children safe. For example, one mum has told me how her child has two buddies, who sit either side of him at lunchtime. They know not to swap food, not to touch each other and so on.

So we went to the meeting with the preference of a nut ban, but if that wasn’t to be, then ready to discuss safeguarding measures.

School dinners

When we arrived at school, our first port of call was the school kitchen. The manager immediately put our minds at rest and D will be having school dinners from September.

The school works on a two week menu system. The catering company provide an allergen chart for all of the ingredients the school will be using. None of the ingredients on the chart we were shown contained nuts or peanuts.

I have since learned that Cheshire East Council’s policy on nuts is:

“Due to nut allergies becoming more common place Cheshire East Catering has taken the decision to remove nuts from all school kitchens.”

Given D’s allergy, the school would now double check product ingredients labels and also check for “may contain nuts” warnings. If any product ever has a precautionary label, the kitchen will make D a separate meal. They will be sensitive in how this is explained to him, so he doesn’t feel singled out.

We discussed cross-contamination and, if there ever is a “may contain” product being used, the kitchen staff know to make D’s alternative meal in a separate area, with separate utensils etc.

The safety plan

I had prepared a list of questions to ask the school based on the details another nut mum had given me of the risk assessment her son’s school carried out (see Starting school with a nut allergy).

This is what we agreed:

General

  • We will provide the school with at least 2 (and preferably 3) medical kits (each containing an EpiPen, inhaler, spacer and anti-histamine). These will be kept in a classroom cupboard, the staff room and (if we can provide a 3rd kit) in the dining hall.
  • When D goes from his classroom to lunch, his “classroom” meds kit goes with him. Whilst he’s in reception, year 1 and year 2, this is looked after by a teacher. When he’s older, he will carry his meds in a pouch on him during breaks and lunchtime.
  • D’s photo, details of his allergies and emergency plan will be on the wall in the kitchen and the staff room.
  • All staff, including lunchtime assistants, are trained to spot a reaction and what to do in an emergency (administer the EpiPen, call 999 etc).
  • If D has a reaction for example in his classroom, another teacher will go to the staffroom to get the 2nd EpiPen, and vice versa.
  • Classroom equipment (for example, food packets in the home corner) will be vetted to ensure they don’t contain nuts.
  • School are aware of the risk from mouth blown instruments – we will provide his own recorder, for example, if ever needed.
  • All children have their own water bottles on a table in the reception class. D’s will be kept separately, so another child doesn’t use it by accident.
  • Children are encouraged to wash their hands regularly.

Lunch times

  • The children eating school dinners sit at different tables from the children with packed lunches. D’s teachers will arrange for buddies to sit either side of D, who know not to swap food etc.
  • Lunchtime staff will know who D is, where his meds are and are EpiPen trained.
  • Lunchtime staff will wipe down his table before he sits down.
  • Other parents will be advised of the “no nut” policy and asked not to include peanut / nut containing products in packed lunches, given there is a pupil with a life threatening allergy.

Celebrations

  • I will put together a safe treats bag, to be kept at school for any class celebrations.

One thing we didn’t cover, which I need to ask, is that I’m told in advance if there’s going to be a party day, so I can arrange safe food if need be. 

School trips

  • For school trips, the school kitchen provide a packed lunch. I’ve asked for school to please talk to me beforehand to discuss the arrangements for food and his medication kit and to confirm the member(s) of staff who could administer the EpiPen.
  • School have asked that I come along as a helper on trips (which I’m happy to do whilst he’s still little, but appreciate I need to be careful not to cramp his style as he gets older!).

Our homework

So, over the summer holidays, I need to:

  • Put together 2 (preferably 3) medicine kits.
  • Put together a safe snacks box.
  • Obtain up-to-date versions of D’s allergy action plan from our allergy doctors.
  • Obtain a letter from our GP confirming that D cannot eat peanuts or tree nuts (this is required by our Council before they provide a nut free diet).
  • Drum into D two key rules (which I’ve cribbed from another nut mum), namely “1 – don’t eat anything that someone else gives him, 2 – tell the teacher if he feels any sign of a reaction at all”.

Now I just need to persuade him to wear a uniform that doesn’t have Spiderman on it and we’re laughing (well, almost…).

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Severe allergies…

I’ve talked previously about how best to describe my son’s peanut allergy in conversation, so other people understand the severity. I’ve fallen into the habit of saying he is “severely allergic”, for fear that saying “allergic” might make the listener think “hmm, yeah, isn’t everybody these days” and saying “anaphylactic” might not be understood.

In recent months, I have read on several occasions that there is no such thing as a “mild” allergy: as any allergy has the potential to result in a severe allergic reaction. You can’t predict with absolute certainty whether an allergic person will have a mild or severe reaction on coming into contact with their allergen. They might have hives on one occasion, but anaphylaxis on another. So I am probably undermining the term “allergic” by qualifying it with the word “severely”. Simply saying “allergic” SHOULD be enough.

… and the allergy pretenders

Then I heard a story that left me somewhat aggravated and which also made me realise there is a need to spell out to people that, not only is my son’s allergy severe, it is also very “real”.

A friend of a friend said he had an allergy to chillies. One evening, whilst at a rugby club social, my friend realised a spicy dish had been taken to the “allergic” man’s table by mistake. She panicked, rushed over to warn him  … only to be met with a mumbled “erm, I think this will probably be alright” and then to see him continue eating it. Turns out, he was pretending to have an allergy, to make sure people didn’t serve him chilli-laden food.

I’ve also heard talk of people feigning allergies or intolerances to certain foods, so they don’t have to confess to counting their calories. Obviously, this all takes a far more worrying turn if someone is claiming an allergy to mask an eating disorder, and I am in no way qualified to pass comment on that. However, the woman who goes out for a meal with friends and, to save face when ordering a salad, pretends to have an intolerance? Unnecessary, unhelpful, and for goodness sake, how unassertive?

It would appear faux food allergies have been in vogue for some years, with the Washington City Paper reporting on the trend back in 2008.  The article quotes restaurant owner Jeff Black, who says of the “ingredient-averse” who feign an allergy:

“When people fake disease, it’s just like people who fake to get handicap plates… It’s ethically and morally wrong.”

Absolutely. So, why do diners do it? Is it an expression of control freakery where they otherwise don’t trust a restaurant to make a meal to their taste (or within their budgeted calorie allowance?). Is it a form of attention seeking, so that they are fussed over by the restaurant or receive sympathy from friends? Or is it simply a cowardly way of ensuring you get the meal you want, and these people haven’t realised the disservice they are doing to real allergic diners?

The problem of pretend allergies may even be rife amongst school children. It seems some parents are not above claiming that their child “can’t eat” something, when the truth is they “won’t eat” a certain food. During my recent spate of primary school tours (sussing out which were allergy savvy before my son starts this September), one headmaster stressed to me the need for a doctor’s letter confirming that D had a diagnosed allergy. Apparently, this proof is required so the school can differentiate the children with genuine dietary requirements from those who are merely picky eaters.

This approach is also recommended the School Food Plan, where the section dealing with allergies in the Q&A for headteachers states:

“Make sure that dietary needs are backed up with a medical certificate or letter from the doctor, so you ensure you are only altering your catering for those who are medically certified – or those who have special diets for religious or cultural reasons.”

I find the whole notion of pretend allergies quite incredible. It may seem like a harmless white lie, but the more allergy pretenders there are, the more catering establishments and the general public will be cynical about the claims of those with real allergies. So… men who can’t handle hot food, dieting ladies and pandering parents, please think twice before turning allergy pretender. It really doesn’t help those with the real medical condition.

Further information

Severe allergies

The Allergy UK site contains information on an allergic person’s chance of having anaphylaxis. It states this is:

“a little more likely in someone who has:

  • had a previous anaphylactic reaction
  • moderate-severe asthma
  • underlying cardiovascular disease”

Factors such as “exercise, heat, alcohol, the amount of allergen taken, and, for food, how it is prepared and consumed” can also influence the severity of the reaction. (For full details, see Allergy UK, Anaphylaxis and Severe Allergic Reactions).

Allergy pretenders

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Today’s allergy entrepreneur sharing her story is Hailey Phillips, the founder and creator of Allergy Adventures, which aims to help “children with food allergies live safe, happy and healthy lives, filled with fun and adventure”. If you visited the Allergy Show this year, you’ll no doubt have seen the Allergy Adventures zone for children. Every time I passed, the stand was buzzing with children taking part in craft activities whilst parents snapped up the fun storybooks about Minoo, Woot and friends and their magical lunchbox adventures. Allergy Adventures are already improving children’s experiences at hospital allergy clinics and will soon be increasing allergy awareness in schools. Here Hailey talks about the many ways in which she is helping children to have a positive mindset about their allergies.

Hi Hailey. It’s great to talk to you about Allergy Adventures. Let’s start with how it all began. I know you have coeliac disease … but that a huge inspiration behind you founding Allergy Adventures was your niece?

Yes, my niece was diagnosed with an egg allergy at eight months old. But it wasn’t until she was two that I started to realise how emotionally damaging food allergy can be for children as they get older.

Birthday parties, school lunches and seasonal festivities like Easter, Pancake Day and Christmas, are just a few of the times when children with allergies can feel excluded.

And it’s not just the feelings of ‘missing out’; extreme allergic reactions can be terrifying.  My niece had an anaphylactic reaction at her nursery when she was two, and we’re currently going through a series of food challenges to nuts after she had a reaction late last year. She’s now seven and still hasn’t shaken the pesky allergies off.

So with all of this in mind, I gave up my full-time job in London as a graphic designer – sorry mum! – to create Allergy Adventures®, with the aim of helping children with food allergies learn about their condition in as light-hearted a way as possible. I created the maze design in recognition of the confusing journey that parents start on when their child is diagnosed with food allergies.

But the journey can be rewarding when you find a way forward; be that a successful free from bake in the kitchen, or finding a new free from product to try.  And for children, the maze creates a look that’s fun, and I mix this up with exciting ideas and new things for them to discover. This helps them to manage the seriousness of food allergy, and to keep themselves safe around food.

Allergy Adventures booksYou have a range of children’s storybooks where characters with different allergies go on all sorts of adventures. Was this something you created originally for your niece?

Yes. I wanted to help my niece realise that, in spite of her food allergies, she could enjoy a variety of other foods that wouldn’t make her ill. And above all, make it a fun learning experience, so I came up with my quirky characters who go to magical places and have cool adventures with allergy-friendly foods. There’s an onion ringmaster at a circus and a beetroot monkey at a zoo, who does a very funky dance. It sounds a bit wacky, doesn’t it? I obviously read way too much Alice in Wonderland and Charlie and the Chocolate Factory when I was a kid!

But behind the fun there are serious messages in the books that teach children how to keep themselves safe around food, and to always look out for hidden allergens.

“My Seaside Adventure” hit the shops before Christmas, which tells the story of Woot who is allergic to nuts. Another character Boskus is peanut allergic – is he going to have his own adventure sometime soon?

Allergy Adventures Woot nut allergyAllergy Adventures Boskus peanut allergy

Ahh Boskus, I’m a bit worried that he might be a victim of Allergy Adventures®’ success! Although his story is all sketched out – he has a pretty wild time on some dodgems made from jelly – he may have to wait a little before I can bring him, and his funfair adventure, to life.

I’ve just been awarded a grant by the Wellcome Trust to develop an online workshop for schools – I’ll come back to that in a minute – so that will knock out much of 2014. And beyond that… well, I’m hoping 2015 will be his year!

I’m even wondering whether he might make his début in an eBook, I’d love to know what readers think of that idea…

 

Last year you launched the “Allergy Adventures Passport Pack” at St Thomas’ Hospital in London and this is now also being used at the James Paget Hospital in Great Yarmouth and by Dr George du Toit in his private allergy clinic. Can you tell us a bit about the passport pack? Are there plans to introduce it in other hospitals across the country?

Allergy Adventures passportThe idea for the Passport Pack came about after I saw how stressful and scary children can find a trip to the allergy clinic. Often parents aren’t really sure what will happen, and so families arrive at the hospital feeling anxious, with vague thoughts about being pricked on the arm and maybe having a reaction.

I wanted to create something that would appeal to children, explain clearly what would happen to them during their visit, and also instills a proud sense of achievement on completing their journey. When children arrive, they are given their own Allergy Adventures® Passport and as they visit each part of the clinic – height, weight, dietician, etc – their Passport is stamped by the nurses and consultants. At the end of the visit they receive a reward certificate and a sticker.

I’m currently working behind the scenes to introduce the Allergy Adventures® Passport Pack into other hospitals, but I’ve also had some great support from parents who have been mentioning the Passport to their clinics. That’s what happened at Great Yarmouth; a parent asked her hospital to consider the idea, the medical staff got in touch and now the Passport is up and running. Never underestimate parent power!

Your online workshop for schools sounds like a fantastic project – tell us more!

Yes, this was huge news for Allergy Adventures! Recently I was awarded a grant by the Wellcome Trust to develop an online, science-based workshop for schools, to help improve awareness and understanding of food allergy in schools.

The workshops will include fun, educational videos, which will provide the focus for classroom activities. Through a series of cool experiments and explorations, children will learn facts about the human body, such as how the immune system reacts to a threat (allergens) and how medicine can be used to counteract a reaction. Children will also learn key safety points too, to help keep friends with allergies safe.

I’ll be working with a team of experts to produce the workshop, including paediatric allergy specialist, Dr Adam Fox, and psychologist, Dr Rebecca Knibb. It’s a great opportunity to build awareness and understanding about food allergies in schools, and will hopefully lead to children with allergies feeling less excluded.

It’s very much in the early stages, but I’ll be keeping everyone informed of my progress on Twitter and Facebook!

And whilst the workshop is developed you have an educational safety poster for schools? Where can people get hold of a copy for their school?

By visiting: http://shop.allergyadventures.com/products/allergy-poster

Allergy Adventures poster

Finally, you are currently carrying out some research into cooking lessons, food allergies and schools? How can Nutmums.com readers help?

They can head over to my blog – HERE – and answer my very short questionnaire. Or they can email the answers to me at: hello@allergyadventures.com. The results so far have been fascinating, and there’s a clear need for teachers, at both primary and secondary level, to be more aware about food allergies.

Thanks so much for talking to us, Hailey!

Contact details

 

For a review of the Allergy Adventures “My Seaside Adventure” nut free storybook, click here.

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I recently heard from a mum of a little girl with a severe sesame allergy. Fortunately, her daughter’s school have now announced that their school meals will cater for all allergies (and that children may continue to have packed lunches, if they prefer). However, she raised a very interesting point about whether a packed lunch ban could actually make school dining halls a safer place for nut and seed allergic children.

Here’s what she said:

“It occurred to me that free school meals for all could help children with nut and seed allergies. Where schools like my daughter’s have chosen to implement a nut and seed ban, the main health risk is from an accidental exposure to a packed lunch where the parents have broken the nut and seed ban (which has happened…. we get stories of parents telling their children to lie and say that the health food bar or chocolate spread doesn’t contain hazelnuts etc etc). By reducing the number of packed lunches, the new provision could create a safer environment for children whose allergy is so severe that anaphylactic shock can be triggered by airborne allergens or skin contact…

Accidental exposure from other children’s packed lunches was the biggest concern that I had when my daughter started school.  At the young age of 4, many children don’t understand allergies and don’t have full muscular or social control –  during a meal they are constantly touching each other and each other’s food. But the staff-pupil ratio at most state schools is so high that there is inadequate supervision. So our exec head gave my daughter a 1-1 supervisor at meal times (which she still has and will continue to have until the end of year 1), and agreed that she would sit with the school dinner children rather than the packed lunch children because we could be sure that the school dinners didn’t contain sesame seeds. We also created a system of ‘allergy buddies’ – children who always sat next to her at meal times and who helped her to give a school assembly about food allergies and who generally explain and support her socially if she is ever challenged. The allergy buddies are also trained to tell a teacher if she starts to cough / wheeze / sneeze or get hives. And they know where her emergency medical bag is kept (we felt this was important in case a supply teacher ever came in and didn’t know where to find the medication in an emergency).”

What do you think? Might school dinners in fact be safer than packed lunches, if the school and its caterers pledge to make meals allergen free?

And has anyone else experienced this outrageous packed lunch fraud, with children instructed to lie about their packed lunch ingredients? If so, what did your child’s school do to address the issue?

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Have you heard about “universal free school meals” and the School Food Plan? It will affect anyone with a child in reception, year 1 or year 2 from this September (and potentially ALL primary school children in years to come).

September 2014: free school meals

Last September, Deputy Prime Minister Nick Clegg announced that, from September 2014, the following pupils and students will be eligible for a free school meal:

  • ALL infant school pupils in state funded schools in England (so children in reception, year 1 and year 2).
  • Disadvantaged students at sixth form colleges and further education colleges.

This announcement came on the back of the publication of the the School Food Plan in July 2013, in which Henry Dimbleby and John Vincent recommended that the government should embark on a phased roll out of free school meals for all children in all primary schools.

The government’s stated aim is to provide infant school children with a “hot, nutritious meal at lunch time”, in order to “improve academic attainment and save families money”. Nick Clegg said:

“My ambition is that every primary school pupil should be able to sit down to a hot, healthy lunch with their class mates every day.”

So far, so laudable. And a policy that states that all infant school children will receive a free school lunch, must include food allergic children too, right?

On reading about the plan, the first questions that spring to my mind were:

  • If my son has a school lunch, will this be nut free?
  • Even if the ingredients are nut free, will the school cook / catering company understand that he cannot have products which say “may contain nuts”?
  • Will the school kitchen staff understand about cross contamination?
  • If the school can make him a nut free meal, will there be any variety? (I’ve heard several stories of allergic children currently on school dinners having the option of jacket potato… or jacket potato. Every single day).
  • If the school lunches won’t be nut safe, might he be the only child eating a packed lunch whilst everyone has school dinners?

Can schools BAN packed lunches?

A further important point is whether schools have the power to ban packed lunches. The School Food Plan infers in several places that headteachers will indeed have this power. For example, the summary of the plan says:

“We have put together a ‘checklist for head teachers’… This includes everything from chucking out prisonstyle trays and getting teachers to eat in the dining hall, to banning packed lunches (it can be done!).”

The checklist itself suggests that headteachers:

“Make sure packed lunches are not a ‘better’ option. Ban sugary drinks, crisps and confectionery, or offer prizes and other incentives for bringing in a healthy lunch. Some schools ban packed lunches outright. If you want to do this, try starting with your newest intake (pupils in reception or year 7). The ban will then apply to all the years that follow them, until it extends to the whole school.”

The Q&A for headteachers is even more explicit, stating at question 11:

“As a Head Teacher, you have the power to decide whether you want to allow pupils to bring in a packed lunch instead of taking up their free school meal. We have seen schools where the Head Teacher has successfully banned packed lunches across the whole school. This clearly takes a clear commitment and excellent communication with pupils and parents.”

So, from this, packed lunches can be banned (and the clear inference is that they should be). The only reference I could see to the contrary was at question 6 of the Q&A, which says:

“be aware that UFSM does not necessarily lead to 100% take up of meals. Because of food allergies, absences, religious beliefs and those who will insist on carrying on with packed lunches, take up usually hovers between 85% and 90%.”

The Anaphylaxis Campaign also noted (in October 2013) that:

“As far as possible we would like to see the severely allergic child to have school meals with their peers … Parents of children with very severe and complex allergies should note that the plan does still allow packed lunches from home.”

So, whilst the position isn’t 100% clear, it seems that a school can impose a packed lunch ban, but make a concession for those with food allergies or certain religious beliefs.

What does the School Food Plan say about food allergies?

Very little, so far. The key provision relating to allergies is set out in the Q&A for Headteachers as follows (click to enlarge):

School Food Plan headteacher FAQs 19 Feb 2014The good news is that more  detailed guidance is expected soon…

How does the School Food Plan tie in with the Children and Families Bill?

The Children and Families Bill: food allergies

The Children and Families Bill is currently passing through Parliament and is expected to be enacted as the “Children and Families Act 2014” soon. The Bill covers a wide range of areas, such as family law, childcare providers and parental leave.

In October 2013, the Government announced that the Bill would be amended to include a duty on schools to support pupils with long-term health needs, namely:

“The appropriate authority for a school … must make arrangements for supporting pupils at the school with medical conditions”

In doing so, the authority must “have regard to guidance issued by the Secretary of State”. The government is consulting on this statutory guidance at the moment (the consultation will end on 14 March 2014).

The duty (and related guidance) aim to ensure that children with long term health needs have full access to education. The current draft guidance refers to food at paragraph 39, providing that:

“it is not generally acceptable practice to: … send children with medical conditions home frequently or prevent them from staying for normal school activities including lunch”

For more details, see the Anaphylaxis Campaign’s report of the Bill’s progress through Parliament.

The Children and Families Bill: free school meals

In addition to the duty to support pupils with long-term health needs, on 23 January 2014, the Government announced its:

“intention to amend the Children and Families Bill, which is currently before Parliament, to place a legal duty on primary schools to offer free meals to all pupils in reception, year 1 and year 2 from this September. The legislation will also include a power to extend the policy to additional year groups in future.”

In summary…

  • Primary schools will be under a legal duty to provide free school meals (to children in reception, year 1 and year 2) from September 2014.
  • It seems that, although headteachers have the power to ban packed lunches, food allergic children may be exempted from this ban.
  • The detailed guidance for schools regarding how to keep food allergic children safe is still awaited.

I was chatting recently to the head of nutrition at a catering company which supplies many schools. Her view that there shouldn’t be a problem with nuts, in that most schools already veto both foods with nuts as an ingredient or those labelled “may contain nuts” or equivalent wording. Whilst that was reassuring for me to hear, the situation may not be so straightforward for those with multiple allergies (and I imagine if you are dealing with allergies outside of the “top 14”, it will be trickier still).

If a school can’t provide a safe school meal for an allergic child, and a parent has to instead provide a packed lunch, this raises questions of both:

  • “Exclusion”: the child with the long term health condition being unable to join in school lunches with their peers.
  • Cost: who should be paying for the packed lunch alternative?

And, if a policy of “free school meals for all” excludes food allergic children, could there potentially be an argument that this is treating a disabled child less favourably than another child? If a school says “allergic children can bring packed lunches”, would that be a reasonable adjustment for a disabled child? Or is it reasonable to expect a school to adapt its menu options to provide safe alternatives for allergic children?

Let’s hope it doesn’t become necessary to even think about such arguments. Fingers crossed the forthcoming guidance for schools will inspire confidence that food allergies CAN be catered for and that free school meals really are for “all”.

Further reading