‘Natasha’s Law’ – a group response

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Earlier this year, the Food Standards Agency and Department for Environment, Food & Rural Affairs (Defra) announced a public consultation on proposed changes to the allergen labelling laws in the wake of the tragic death of Natasha Ednan-Laperouse. Printed below is a group response submitted to that consultation and signed by more than 200 members of the allergy community.

A little background: the consultation relates only to so-called ‘PPDS’ establishments – Pre-Packed for Direct Sale. This doesn’t have a completely clear-cut definition but basically means anywhere that makes and packages items ready for sale on the premises.

That includes sandwiches packed on-site and taken by the consumer from a chiller cabinet; salads displayed in deli boxes behind a counter and bought to take away by the consumer; takeaway items collected by the consumer if displayed in packaging on-site (e.g. chicken in a box; wrapped burgers). This may also include supermarket foods such as deli counter boxed salads, weighed and packaged cheeses; fresh (uncooked) pizzas from the deli counter; baked goods from a bakery counter.

It doesn’t include foods that are ordered by the customer, prepared freshly and then wrapped or packaged to be taken away; or foods that are prepared in advance of a rush, displayed on the counter but not wrapped until they are bought by the consumer (e.g. a pile of filled bagels in a cafe).

Anyway, here goes (warning: it’s long)… *deep breath*:

Allergen Labelling Review Team
Defra
Room 202, Zone 2
1-2 Peasholme Green
York
YO1 7PX                                                                                                28 March 2019

Group Response to Allergen Labelling Review

Dear Sir/Madam

I am writing as the informal representative of a group of 208 individuals who have come together under the banner of the Twitter allergy community @allergyhour to respond collectively to the DEFRA Allergen Labelling Review.

Continue reading “‘Natasha’s Law’ – a group response”

Twitter Q&A on the AAI Shortage with Lynne Regent

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As many will know, there is rising concern over the national shortage of Adrenaline Auto-Injectors – the devices best known by their brand names, such as EpiPen, Emerade and Jext, which are the first and only port of call in the event of a serious anaphylactic reaction. Many families are finding it impossible to fulfil their prescriptions. On @allergyhour over on Twitter last week we put some questions to chief executive of the Anaphylaxis Campaign, Lynne Regent. Here are her responses below:

Q: How long before expiry should we request more auto-injectors from our GP?
Lynne: One month

Q: Aside from those EpiPens granted an increased four month usage beyond their expiry dates, in an emergency how long are expired EpiPens OK before we can no longer use them?
Lynne:
The activity of Adrenaline Auto-Injectors does reduce after the expiry date, however they are safe to use beyond expiry unless the liquid is discoloured and contains particles – then it should be discarded. If in doubt please ask your pharmacy to check with you.

Q: Schools are refusing out of date pens. How can we work to allow schools to use/keep expired EpiPens until the supply issues are resolved?
Lynne:
Schools may require a letter from a GP or a pharmacy to explain the circumstances. If you have any difficulties please contact our helpline on 01252 542 029.

Q: My chemist has no pens in stock. What should I do?
Lynne:
You may need to revisit your GP to ask if they can prescribe an alternative medication, and call the customer service lines for the pharmaceutical companies. For full details see our statement.

Q: The situation seems to be getting worse before it gets better. What is the time frame for all unfulfilled prescriptions to be filled and full stock to be returned?
Lynne: We are unsure when stock levels will return to normal. We will continue to be in contact with the Department of Health, the Medicines and Healthcare products Regulatory Agency [MHRA] and the pharmaceutical industry for the most up-to-date information.

Q: We know Brexit may further complicate things. What are the contingency plans?
Lynne: We can’t answer this question on Twitter – it is a complex question that requires a wide-ranging debate.

Q: Will the approval of a new generic EpiPen in the US ease the situation over here? Will it be available in the UK?
Lynne: To our knowledge no requests have been made to get another adrenaline auto injector licensed in the UK.

Q: What should people who have no pens, and can’t get any from their pharmacist, do?
Lynne: Call the customer service lines for the pharmaceutical companies – full details on our statement.

Q: What is the Department of Health doing to work with you at the Anaphylaxis Campaign?
Lynne: We have been in direct contact regarding the availability of Adrenaline Auto-Injectors in the UK and they are working with the Medicines and Healthcare products Regulatory Agency and the pharmaceutical industry to manage the situation.

Q: Why are some batches of EpiPen OK to have their expiry dates extended where others are not?
Lynne: Mylan UK have obtained acceptance from the Medicines and Healthcare products Regulatory Agency to extend the use of specific lot numbers following rigorous testing.

Join @allergyhour every Thursday, 8.30-9.30pm, for the chance to share recipes, thoughts and info about living and coping with allergies. 

 

 

Dr Oetker Dr Schmoetker

SINCE cake-making unexpectedly entered my culinary lexicon with the horrifying realisation I couldn’t just go out and buy one, I’ve relied happily on Dr Oetker for icing. The supermarket own brand fondants all seem to be ‘may contain nuts’ so it was a blessed relief to have a ready-to-roll  I could easily track down in most stores.

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Until now. If you’ve come across Dr Oetker Regal-Ice lately you will no doubt have noticed ‘may contain nuts’ has arrived there, too. All of a sudden I’ve realised we have another birthday on the horizon and I need to find out exactly what the risk is – and possibly hunt me down a safe alternative elsewhere. Continue reading “Dr Oetker Dr Schmoetker”

Top 10 allergy friendly places to eat (2014)

IMG_9028SO, here it is – my run-down of our top allergy friendly meals out in 2014. A bit late, but timely in the aftermath of the ‘100 chefs rant against EU allergy laws’ thing. I’ve been tweeting my thoughts on this for a week, and am frankly bored of the moaning. Compelling caterers to declare which allergens are in their dishes doesn’t make anywhere more able, or likely, to cater for us, but it’s a first step on the road to greater understanding. It means that at least we have the right to ask, and to be told. I think that’s fair enough.

Anyway, enough about that. From never having the confidence to allow anyone bar family to cook for Sidney, in this past year we’ve managed to find a clutch of places happy, willing and able to cater for his multiple allergies. They are living proof that it is possible and, for that, I love them longtime.

So, in no particular order, here we go: Continue reading “Top 10 allergy friendly places to eat (2014)”

Eating out with allergies: the ‘rules’

IMG_1611THERE I WAS, poised to press ‘publish’ on my next post: our top 10 allergy friendly places to eat from 2014. Finding safe spots is never easy, but over the past year we’ve clocked up a few favourites.

Then I realised I should probably preface this post with The Rules. They are the steps we take, and the key things we consider, whenever we eat out. I’m sure others will have more to add, but this is simply how we go about things. Here goes:

* I always ring and email in advance to check the manager and chef are aware, and in some cases we pre-order our meal. It starts as a sussing-out call – do they sound as if they know what they’re doing? If not, forget it. If they do, I’ll go into greater detail, stress that we need the food to be prepped free from cross-contamination, and find out what dishes are likely to be safe for Sidney to eat. I’ll usually summarise the allergies and what we’ve mutually agreed in an email before our booking date. If nothing else, it’s only fair to give a place advance warning where possible and to explain fully what we’re after. Continue reading “Eating out with allergies: the ‘rules’”