Multiple Severe Allergies + School Won't Allow Packed Lunches?

[AllergyMumma]

Hello,

Please could I get some help/guidance?

My daughter has multiple severe allergies (Anaphylaxis) to:
-eggs
-nuts
-peanuts
-dairy
-sesame
-lentil
-penicillin

She is due to start primary school this sept, she will be joining Reception. I've spoken to a senior member of staff at the school regarding my daughters allergies and they have informed me that they do not allow packed lunches. They seem very adamant about this..

Last year at her first nursery (who also banned packed lunch), they made a mistake and gave her dairy cheese which resulted in my daughter having a severe reaction and nearly dying. Obviously after all of this I want to avoid anything like this ever happening again. She's 4 years old and she trusts any adult that helps her, I want to provide her safe food from home and eliminate anyone 'giving' her food that could potentially cause her harm... It's a large school with 90 children in Reception so I just want to reduce the risks as much as possible but I feel like I'm fighting against the school and getting no where.

The staff member made a flippant comment that "it's like opening your door and being hit by a bus, you just never know what will happen" which is NOT the same as suffering from multiple severe allergies. I feel really alone in dealing with this and wondering if anyone has experienced anything similar?

www.gov.uk/government/publications/standards-for-school-food-in-england/school-food-in-england

state that:-
Schools should make reasonable adjustments for pupils with particular requirements, for example to reflect medical, dietary and cultural needs.

I will use this when speaking to the head teacher, i hope she doesn't turn around and say it doesn't mention packed lunches 😫

I’m surprised the HV thinks other schools might be as ridiculous and I bloody hope she’s wrong.

I think you’d have more luck in getting SENDIASS or one of the allergy charities to speak to school. SENDIASS offered to come with me to face to face meetings at school.

oh sorry i misread...she said she's never heard of anything like this before x

i've called my local SENDIASS team and left a voice mail hoping they can help, that would be great if they could come along.

As a parent of a child who went into reception with Type 1 Diabetes, I would suggest the following:

1. Is there a paediatric nursing team for food allergies at your local hospital? If so, ring them for advice. I have have used our Diabetes Nurses to keep ds from the harm that is caused by schools thinking their needs and policies trump the medical needs of a child.

1. In terms of epipen training, you need to have three people trained and be signed off. Everyone 'knowing what to do' isn't good enough. Most people are terrified of giving injections.

1. Ask school about Epipen storage - I consistently find schools are utterly hysterical about protecting 'other children' from being accidentally injected, and thus place life saving meds somewhere inaccessible.

1. Don't try for an ECHP. Focus on medical plans and your hospital team. The school don't have a legal duty to provide someone to inject dd in the event of anaphylaxis but she is protected in law and they have to legally meet her needs and keep her safe. It is something of a grey area.

1. If the school are going to be dicks about this, get in touch with your LA and tell them that the school are currently refusing to make the necessary adjustments which will allow dd to attend.

Unless you are 100% happy, don't send her and demand the LA finds another school place.

Good luck - you are in the right here op. It is amazing how very educated and clever people can get this type of this so wrong sometimes.

To give you context, my ds is 14 and last year the school medical officer rang me to say that if he kept injecting in the classroom rather than the office/toilet they had provided for him, they would have to exclude him.

I spoke to his Paediatric team who said he can inject where the bloody hell he wants to, when he wants to and how he wants to.

Poor child has been dealing with this level of shit since he was five.

I don’t understand why the hell they care where he injects and how bloody unhygienic to suggest he could do it in the toilet! Poor lad, it’s enough to cope with being diabetic in the first place without dealing with crap like that.

Thank you so much for this. I actually called her allergy nurse yesterday for advice and she said she will talk to the dietician to write a letter advising she NEEDS a packed lunch. She did say though that schools have their own rules and they don't have to take on her advice..let's see. I will take it further and escalate if needed. She also said she would help me to support my dd starting school so I've put her in touch with the school nurse. I really hope we can get somewhere with this.

Sorry whats an LA? Great suggestions, I'm going to do everything you say..good idea with the 3 signed staff.

I'm really sorry to hear how your son is being treated..the toilet!?! That's so wrong. 😢That's discrimination x

LA is local authority, so your county/city council.

Oh thank you, mine are useless 😂

I don't understand why it's been such a battle for you, OP, and I'm sorry you've had to deal with this.

When you have the sort of allergies that your DD has, that's considered a disability under the Equality Act. Some people are really stupid and need to see a letter from a doctor spelling out that yes, severe allergies are considered a disability, because of the profound and lasting impact they have on day-to-day life.

This then unlocks the right to a reasonable adjustment, and I am struggling to see how you making a packed lunch isn't reasonable. You're not creating any additional work for the school. In fact, you're making less work for the school.

Have you actually presented the school with a letter yet that says your DD has a disability and that's why this reasonable adjustment is required? Or does it just say she has allergies and it might be a good idea? It may be a case that you need to find a doctor who will write you something more sternly worded.

You then need to ask the school why they are discriminating against your disabled daughter. Sometimes it's not about the message, but the language that you're using.

I don't think the school see's her allergies as a disability, they have made an adjustment for the non-verbal autistic boy but not for my dd. They seemed to be very proud of the fact that they 'have several kids with allergies and manage them fine', that's great but I'm not comfortable and i can't trust anyone to provide her food, not again, not after last time.

I have a feeling that they don't want my dd to have a packed lunch bcus then other kids with allergies will request a packed lunch, but tbh anyone with an allergy should be allowed a packed lunch esp if they are as severe as my dd. After all she's been through I would have hoped the school would have a little compassion for her but they seem obsessed with their rules.

I have a note from her allergy DR, but I'm requesting a more strongly worded one which I will present to the school.

I think you are right regarding the language. Unfortunately not many people see allergies as a disability, but they really are. Her allergies affect everything she does, I've had to quit my job so I can be nearby to her bcus we've had so many scares.

Their rules are stupid.

Only two of your DD's allergies cause anaphylaxis for me, and my school were positively grateful my DM sent me in with packed lunches. At her age, I wouldn't have been able to challenge what I was eating.

I only started eating school lunches in secondary school, i.e. when I was old enough to query the contents of the food, stab myself with an epipen in an emergency and call my own ambulance. When it comes to allergies, packed lunches are the easy solution whilst a child isn't old enough to manage their food and you're not around to supervise.

As an adult, I've done disability awareness training, and it's amazing how many disabilities people don't recognise as disabilities. A lot of people see allergies as - well, just pop an antihistamine and that's OK. As you know, it can be a lot more serious than that, and that's what makes it a disability.

You end up spending your whole life checking labels, avoiding certain foods because you can't be sure, and learning how to take care of yourself in an emergency because everyone else always panics. There's a reason why epipens are capable of being self-administered - it's because when your throat is closing up, other people are a disappointment, and you have to save yourself.

The school are dumb to want to increase your DD's risk. She'll always live with some element of risk, but if you can easily cut it down, why wouldn't you?

I wish you the best of luck in getting this sorted. I hope the new letter helps you.

@AllergyMumma ultimately how they see it comes second to the fact that legally, her allergies are a disability.

Thank you for the support and I'm sorry you have had to deal with all this suffering from allergies yourself x

Label checking and being on high alert has now just become a part of our everyday life and I'm grateful we manage her allergies well at home. It just becomes difficult in the real world, especially when people are closed minded and don't understand. I will power through and she won't be going to that school until they have made adjustments for her.

You would think that their top priority would be keeping my dd safe, but right now it just feels like their rules are more important. I'm so confused why this is such a major deal to them, but having said that her first nursery were also adamant no packed lunches and look what happened there..it's only once they nearly killed her that day that they swiftly backtracked and said we can bring a packed lunch now 🤔I will not be sending her to school as a guinea pig . I'm so angry

Yes exactly I've just dropped a note to her allergy nurse to add this to her letter thank you x

@theobligatorynamechange btw did you ever grow out of any of your allergies? x

No, but don't worry, I've gone on to lead a great life. If you have allergies, you have to adapt, and sure, certain things are off-limits (like travelling in certain parts of the world), but I don't feel like it's held me back. I've lived differently than some of my peers, but I've never felt worse off.

And as serious and as scary as it was for my DM, I eventually became old enough to look after myself and manage my allergies myself - the number of anaphylactic events I've had has been quite low, and whenever I've gone into anaphylaxis, I've handled myself well and lived to tell the tale.

I promise, at some point, your DD will become less reliant on you regarding her allergies and it will all feel worth it. In the meantime... you're doing a brilliant job of being her advocate, and she's very lucky to have you in her corner.

I'm sure you'll never stop worrying because she's your child, but it does get less scary as she becomes older.

That's great to hear! I'm so glad you feel like you didn't miss out, bcus I would hate for my dd to feel that way. We are quite lucky nowadays there are so many allergy friendly alternatives. Hopefully when she get's older she can learn to manage her allergies herself but as a mum I don't think I will ever stop worrying 😂x

@AllergyMumma

I've just seen this advertised and if you can make the time it might be helpful (apols for hideous link):

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