Anaphylaxis Campaign

Supporting people at risk of severe allergies

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The Anaphylaxis Campaign’s fundraising dinner at St John’s College Cambridge

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On Saturday 8th June, the Anaphylaxis Campaign were delighted to attend a fundraising dinner at St John’s College at Cambridge University, with the purpose of raising funds for our universities campaign. This was organised by Emma Dellar, a nurse at St John’s College, and Jacqui McPeake from Allergen Accreditation. We would like to say a special thank you to both Emma and Jacqui for organising such a wonderful event to help us in our work with universities.

Emma spoke about the event in her interview with St John’s Eagle Eye magazine:

“The aim of this event was to bring together different stakeholders to discuss ways to meet the needs of those at risk of anaphylaxis in university and HE/FE settings. It was a joint initiative by the Cambridge College Nurses, a leading allergen advisor who works with catering providers, and the Anaphylaxis Campaign. On the night there was a drinks reception, a four-course dinner including wine and port, and an opportunity to hear three amazing expert speakers.

It came about because currently schools can purchase and administer Adrenaline Auto-Injectors in an emergency. However, the 2017 legislation does not cover this provision in other educational settings despite the evidence that young adults are the most vulnerable. In an Anaphylaxis Campaign survey, 44% of young people admitted to not carrying their lifesaving AAI devices all the time, and around 20 people a year die from anaphylaxis.

Cambridge Colleges and the University have done a lot of work to support students at risk but there is more to be done and we would like to see a law change so there is national uniformity.”

 

Furthermore, as part of our universities campaign, we have recently produced a booklet to support university students with allergies which includes helpful tips and advice. Click here to download the booklet.

Medic Alert and Anaphylaxis Campaign

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We’re delighted to announce that Anaphylaxis Campaign has joined forces with MedicAlert, the national emergency medical information charity.

Aiding those with severe allergies and other medical conditions, MedicAlert is offering a £10 discount to all Anaphylaxis Campaign members and readers.

 

Who are MedicAlert?

The MedicAlert Foundation UK is the original and best provider of medical ID services, offering assurance and life-saving support to its members since 1964.

MedicAlert doesn’t just provide medical ID jewellery. Whilst the most medical information is engraved on to the reverse of the jewellery, their full service ensures that the information provided during an emergency is accurate and comprehensive – it is not restricted to what will fit on to a bracelet or necklace disc.

  • Members’ medical records may include allergies, medical conditions, medication, history, documents including clinical reports, doctor or hospital contact details and next-of-kin information.
  • Unlike other providers of medical ID services, all MedicAlert member records are checked by in-house medical professionals, both when they are set up and when anything changes to ensure that they are accurate and prioritised for use in emergency situations.
  • Records are available 24/7 via the emergency helpline in over 100 languages and dialects.
  • All members can appoint one or more advocates to help manage their record.
  • Members are able to update their medical record online as often as required, ensuring the information provided during an emergency remains accurate and relevant.

Joining MedicAlert

Membership equates to just 9p per day and provides 24/7 emergency phone support, medical professional checks of your record, document storage and the peace of mind that your information is relayed if the unexpected were to happen.

In order to support those at risk of a severe allergic reaction, MedicAlert has discounted the first year’s membership for all Anaphylaxis Campaign members and readers. Enter ANA10 to receive a £10 discount.

When this code is used, MedicAlert will also provide Anaphylaxis Campaign with a £5 donation, which will support our work of raising awareness of severe allergies.

Latest Supply Status of EpiPen® 0.3mg and 0.15mg Adrenaline Auto-Injectors

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Thursday 6th June 2019

Mylan’s manufacturing partner Meridian Medical Technologies, a subsidiary of Pfizer that manufactures EpiPen®, has experienced recent manufacturing challenges which resulted in interruptions in the production of EpiPen 0.3mg and EpiPen Jr 0.15mg Adrenaline Auto-Injectors (AAIs).

To help manage product availability on an ongoing basis until a steady supply resumes, Mylan has assigned a prescription-only process for EpiPen 0.3mg, meaning patients can obtain up to a maximum of two EpiPen 0.3mg AAIs per prescription

The prescription-only process does not affect EpiPen Jr 0.15mg.

Patients should follow the Instructions for Patients detailed below to fulfil their prescriptions and pharmacies should follow the Instructions for Pharmacists outlined below when placing orders.

Instructions and Information for Patients

Patients requiring EpiPen 0.3mg devices should present their prescription to a pharmacy where an order will be placed for up to a maximum of two EpiPen 0.3mg AAIs per prescription.

Patients requiring EpiPen Jr 0.15mg devices can present their prescription to a pharmacy who should be able to fulfil their prescription the same day. However, you should check with your pharmacy to ensure that supply has been received and is available.

Mylan is unable to make any specific treatment recommendation to individual patients. Patients should speak to their healthcare provider for appropriate actions to be taken. However, if you have a question about your EpiPen device please contact our Medical Information team who will be able to help you: +(0) 1707 853 000 (option 1) or email: [email protected]

Information for Prescribers

Please note, when validating the expiry date of an adrenaline auto-injector, the product expires on the last day of the month indicated. For example, if it expires in June, it remains valid (not expired) until June 30.

Instructions for Pharmacists

Pharmacies that are presented with a prescription for EpiPen 0.3mg Auto-Injectors can place an order for up to a maximum of two devices per prescription. Please send anonymized prescriptions to Alliance Healthcare’s prescription validation service, either by fax (0330 332 8126) or email ([email protected]). Please include your Alliance Healthcare account number when placing your order.

Orders from schools should be sent to Alliance Healthcare’s prescription validation service on the fax number or email address above.  Please note that the purchase of EpiPen 0.3mg is currently limited to two devices per order.

Instructions for Schools

To support children and young adults who may be at risk of anaphylaxis whilst away from home, the Human Medicines (Amendment) Regulations 2017 allows schools, without the need for a prescription, to purchase and hold supply of adrenaline auto-injectors. Regulations allow the purchase of a reasonable number of adrenaline auto-injectors for use on an occasional basis and as required.

Schools requiring a supply of adrenaline auto-injectors to be used in emergency situations are now able to order EpiPen 0.3mg and EpiPen Jr 0.15mg through Mylan’s distributor, Alliance Healthcare.

To place your order, please provide your local pharmacy with a letter, written on your school’s headed paper and signed by the principal or headteacher. The pharmacy will then send the request to Mylan’s distribution partner, Alliance Healthcare.

Please be reminded that the purchase of EpiPen 0.3mg is currently limited to two devices per order.

Contact Information

Telephone: +44 (0)1707 853 000

Medical Information e-mail: [email protected]

 

 

If you have any questions, you can contact our helpline and information team at [email protected] or call 01252 542029 for support between Monday-Friday, 9am-5pm.

Chartered Institute of Environmental Health calls for allergens to be included in Food Hygiene Rating Scheme

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On Thursday 30th May, The Chartered Institute of Environmental Health published an article calling for allergen hygiene to be scored in the Food Hygiene Rating Scheme and national guidance provided on how allergen responsibilities are split between environmental health and trading standards.

The Anaphylaxis Campaign believes that the Food Hygiene Rating Scheme needs to be made fit for purpose for the allergic community. At present the scheme provides consumers with information about hygiene standards which allow consumers to make informed choices about the places they eat at. Individuals with a food allergy are not able to make informed choices about a food business based on their compliance with allergen labelling laws. Inclusion of a food business’ compliance with legislation relating to allergens and their allergen management will go some way to improving allergic consumers’ confidence in a food business and highlight the importance of compliance with food business operators.

Click here to read the full article.

FDF publishes updated gluten labelling guidance

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On Monday 3rd June 2019, the Food and Drink Federation released the following press statement:

 

The Food and Drink Federation (FDF) has today published ‘Gluten Labelling Guidance: Best Practice for Prepacked Foods which Include or Exclude Cereals Containing Gluten’ (https://www.fdf.org.uk/Gluten-Labelling.aspx?tr=53NvsCS). This updated UK best practice guidance provides advice to food business operators on how to label food products that include cereals containing gluten, and which claims can be made relating to the absence or reduced presence of gluten (e.g. gluten-free). The Gluten Free Industry Association (GFIA) now joins Coeliac UK, Anaphylaxis Campaign and the British Retail Consortium (BRC) as supporting partners of this guidance.

The document has been developed to illustrate examples of different labelling situations, with special consideration given to oats and wheat species. It provides information about the distinction between coeliac disease and cereal allergy, advice on precautionary allergen labelling, and a flow diagram for making gluten absence claims. It also includes an overview of the relevant EU and UK legislation and guidance.

Heather Hancock, Chairman of the Food Standards Agency, said:

“The Food Standards Agency welcomes the FDF’s work to achieve greater consistency in how the presence of cereals containing gluten and gluten-free claims are labelled on prepacked foods. Having a trusted consistent approach will make it easier for people with coeliac disease or with allergies to these cereals to find and understand the labelling information they need. And that means they can make safer food choices. I am very pleased to see further progress in this important area of public health and consumer protection.”

Alex Turtle, Food Law, Labelling and Enforcement Manager, FDF, said:

“To be able to choose a safe prepacked food, allergic consumers need clear information about its composition; whether it includes any cereals containing gluten or has been produced gluten-free. It is vitally important that food manufacturers provide legally compliant labels that present consistent allergen information. FDF is committed to providing best-practice regulatory guidance and we hope that this updated, more comprehensive, guidance continues to support food manufacturers, of all sizes, to make informed labelling declarations regarding their products.”

Norma McGough, Director of Policy, Research and Campaigns at Coeliac UK, said:

“The Charity supports the updated FDF best practice guidance for the food industry. By distinguishing the presence of allergens (i.e. gluten-containing cereals) with the absence of gluten in foods (i.e. gluten-free), the guidance helps highlight the important distinction between an allergy to cereals and coeliac disease. We also welcome approaches to limit use of precautionary statements relating to the presence of cereals containing gluten in prepacked products.”

 

Lynne Regent, CEO of the Anaphylaxis Campaign, said:

“The Anaphylaxis Campaign welcomes this new gluten labelling guidance introduced by the FDF. We hope that food manufacturers take on board the advice on how to safely label food products, which covers the labelling of cereals containing gluten and products that are gluten-free. We believe that food allergic individuals must be able to make informed decisions and to assess risk and self-manage their condition when purchasing food.”

 

If you have any questions, please either email [email protected] or call 01252 542029.

Statement regarding inquest into the death of Habiba Chisthi

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Monday 20th May 2019

We were very saddened to learn of the death of 9-year-old Habiba Chisthi who tragically died on Monday 18th February from anaphylactic shock, two days after suffering a severe allergic reaction.

Habiba was known to have allergies to eggs and nuts and suffered from asthma for which she was prescribed an inhaler. She went into an anaphylactic shock whilst on holiday in Spain, after eating an ice cream with sauce on which contained her known allergen.

Assistant coroner Peter Merchant said: “Clearly, further enquiries will have to be made into the circumstances of her death.”

He adjourned the hearing until a date to be fixed.

Lynne Regent, Chief Executive of the Anaphylaxis Campaign, said:

“What should have been a happy occasion turned into a tragedy and our heartfelt condolences go out to Habiba’s family. Travelling abroad brings additional challenges for those affected by severe allergies and their families and it is important that these are recognised and acknowledged”

We have information and advice about travelling aboard when you or someone you care for have allergies on our website here.

If you have any concerns or questions, please contact our helpline team at [email protected] or call 01252 542029.

For further information, please contact our press office via [email protected] or call 01252 893864.

Statement regarding conviction appeal of Mohammed Abdul Kuddus following the death of Megan Lee

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Friday 17th May 2019

Mohammed Abdul Kuddus, the takeaway boss found guilty of manslaughter following the death of 15 year old Megan Lee, has won an appeal against his conviction.

After eating takeaway food containing peanuts from the Royal Spice Indian in Hyndburn, Lancashire on Friday 30th December 2016, Megan Lee began experiencing a severe allergic reaction. She was later admitted to Royal Blackburn Hospital but sadly passed away on Sunday 1st January 2017.

Mohammed Abdul Kuddus was given a two-year jail sentence in November 2018, but Court of Appeal judges quashed his “unsafe” conviction on Thursday 16th May 2019.

 

Anaphylaxis Campaign Chief Executive Lynne Regent says: “We are shocked at this decision, and our thoughts go out to Megan’s family during this difficult time. We will continue to work with the food industry to highlight how vital it is that people living with severe allergies are provided with food that is safe for them to eat. It is extremely important that food companies learn from this tragic incident and the implications of getting it wrong”.

 

Sir Brian Leveson, announcing the decision yesterday, said Megan’s order, including the comment about nuts and prawns to highlight her allergies, was seen by takeaway manager Harun Rashid but not passed on to Kuddus. He said: “He knew nothing of the allergy which she had declared. In those circumstances, the conviction for gross negligence manslaughter cannot stand”.

But, he also went on to say: “There is now a general awareness of the potential risks to those who suffer from allergies and, as a result, it should be understood that the courts will rigorously scrutinise the way in which restaurants discharge the duty of care that they owe such customers”.

 

For more information: https://www.bbc.co.uk/news/uk-england-lancashire-48300528

 

About the Anaphylaxis Campaign

The Anaphylaxis Campaign is the only UK wide charity solely focused on supporting people at risk of severe allergic reactions. We empower people living with severe allergies to be more confidently in control of their lives.

We provide information and support to people living with severe allergies, their families and carers, through our national helpline, volunteer-led local support groups and free online AllergyWise training courses. We also campaign and fundraise to achieve our ultimate aim, to create a safer environment for all people at risk of severe allergies.

If you have any concerns or questions, please contact our helpline team at [email protected] or call 01252 542029.

For further information, please contact our press office via [email protected] or call 01252 893864.

Anaphylaxis Campaign’s statement regarding inquest into the death of Karanbir Cheema

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Friday 10th May 2019

The coroner has ended the inquest on Karanbir Cheema and has delivered her narrative and recommendations.

Our deepest sympathies go out to the family of Karanbir Cheema who passed away following a tragic incident which occurred at William Perkin Church of England High School in Greenford, West London on the 28th June 2017.  Karanbir was known to have severe eczema, bronchial asthma for which he was prescribed an inhaler, and was allergic to milk, peanuts, eggs, gluten and wheat.

Following the outcome from the inquest, the coroner has made a significant number of recommendations as a result of this case. These recommendations affect a number of bodies including the London Ambulance Service, the Hospital Trust and the William Perkin Church of England High School. This is a difficult occasion for the family of Karanbir Cheema, but we understand that the recommendations taken forward will bring about a positive result for those affected by severe allergies.

Lynne Regent, Chief Executive of the Anaphylaxis Campaign, said:

“We were deeply saddened to hear about the death of Karanbir Cheema as a result of this tragic incident. We have actively been supporting his family over this difficult time and have been by their side throughout inquest into his death. The coroner has called for a number of positive actions that we believe will positively benefit the allergic community.’

 We wish to make it clear that the Anaphylaxis Campaign are not legal experts; the primary reasons we attend inquests are to offer support to families, and to identify if there are specific lessons that can be learned to take forward into the work we do to support people at risk of severe allergic reactions.

 

 

Anaphylaxis Campaign’s resources to help schools be allergy aware

As part of our Making Schools Safer Project, we have been in contact with over 26,000 schools in the UK to give them access to our free resources including;

  • Our online e-learning course AllergyWise for Schools which is designed to ensure that all staff:
  • Understand how to safeguard children with allergies.
  • Are fully aware of the signs and symptoms of anaphylaxis.
  • Know how to provide emergency treatment.
  • Our KS1-2 Schools allergy awareness resource pack which is designed to facilitate an allergy awareness session for infant and primary school age children.
  • Our KS3-5 Schools allergy awareness resource pack which is designed to facilitate an allergy awareness presentation for secondary school age children.

The Anaphylaxis Campaign believes it is vital for all schools to not only have training for all staff but to also raise pupil’s awareness of the seriousness of living with a food allergy. We hope our resources will support this and help schools become more allergy aware.

All our schools’ resources are available to view and download on our website:

AllergyWise for Schools

KS1-2 resource pack

KS3-5 resource pack

About the Anaphylaxis Campaign

The Anaphylaxis Campaign is the only UK wide charity solely focused on supporting people at risk of severe allergic reactions. We empower people living with severe allergies to be more confidently in control of their lives.

We provide information and support to people living with severe allergies, their families and carers, through our national helpline, volunteer-led local support groups and free online AllergyWise training courses. We also campaign and fundraise to achieve our ultimate aim, to create a safer environment for all people at risk of severe allergies.

If you have any concerns or questions, please contact our helpline team at [email protected] or call 01252 542029.

For further information, please contact our press office via [email protected] or call 01252 893864.

Peanut immunotherapy paper causes stir in the allergic world

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Thursday 9th May 2019

Immunotherapy works by slowing introducing small amounts of the problem allergen to the patient in two phases known as ‘initial’ or ‘up dosing’ and the ‘maintenance’ phase, with the aim of reducing allergic reactions following accidental exposure.

The Anaphylaxis Campaign welcomes the research paper by Chu et al which contributes to the science of food oral immunotherapy. This paper has claimed, through a systematic review of 12 randomised controlled trials, that undergoing peanut oral immunotherapy results in an increased chance of allergic reactions when compared to just avoiding peanuts.

We understand that this paper only provides a part of the immunotherapy story, with many of the trials included focussing mainly on the up-dosing stage of immunotherapy where patients are given an increasing dose of peanut over a long period of time. This is when most reactions occur, but are rare during the maintenance phase where peanut dose plateaus.

We would like to also make it clear that, when undergoing immunotherapy, there is a trade-off between the treatment of related side effects of the immunotherapy at home in a controlled environment with emergency medication available over accidental exposure outside the home.

Peanut allergy affects 1 in 50 children, with its prevalence increasing. Peanut immunotherapy can provide protection against reaction to a peanut eaten without warning or control.

Food Standards Agency & Food Standards Scotland recommend full ingredient and allergen labelling for products pre-packed for direct sale

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Wednesday 8th May 2019

Today the Food Standards Agency held an Extraordinary Board Meeting on food allergies. They considered the analysis of responses to the Allergen Labelling Review on Pre-Packed for Direct Sale food, which 1,675 individuals, 126 businesses, 83 public sector bodies and 24 non-governmental organisations responded to.

The FSA Board decided to recommend to ministers the adoption of full ingredient list labelling, with allergens emphasised on products pre-packed for direct sale.

FSA chair Heather Hancock said the FSA had chosen the strictest of the options they had under discussion because “ultimately this is a life-threatening issue for a proportion of the population, we are balancing consumer protection, public health protection, with the ability of people being able to deliver good business service and choice for people with an allergy or intolerance’’.

The Department for Environment, Food and Rural Affairs ( DEFRA) will have the final say over whether new rules are introduced but if ministers choose to proceed with the recommendation, food businesses that prepare and pack food for direct sale must provide the full list of ingredients and highlight the presence of the 14 allergens on such products.

The review of allergen labelling follows from the tragic death of Natasha Ednan-Laperouse, who died after eating a baguette from Pret a Manger at Heathrow airport in July 2016. The coroner who presided over the inquest of Natasha Ednan-Laperouse concluded that the current legislation is not adequate and requested a review. The Anaphylaxis Campaign welcomed this review and is delighted that after consultation with allergic consumers and food businesses, the FSA has made this recommendation.

Lynne Regent, CEO of the Anaphylaxis Campaign, was in attendance to hear the wide-ranging debate that took place by the board members who carefully considered the challenges and opportunities this position may lead to.

“We welcome the recommendation from the FSA and hope this decision raise awareness of the importance of good allergen management within the food industry,” says Lynne Regent.

For more infomation, click here to visit the FSA website.

 

UPDATE: Food Standards Scotland – Wednesday 15th May 2019

At a public meeting today, the FSS Board reviewed and assessed responses to the consultation, and discussed consumer benefits as well as the risks associated with four options as set out in the consultation. It concluded that FSS should recommend moving towards full ingredient labelling of foods that are pre-packed for direct sale in Scotland, and that further work should be undertaken to assess the benefits and all of the risks in more detail.

 

What is the current legislation for a food business that makes and sells food on the same site?

At present when a food business sells prepacked food for direct sale the same regulations apply as to non-prepacked food under the EU Food Information for Consumers Regulation No. 1169/2011 commonly known as EU FIR 2014. This means food businesses preparing their products freshly on their premises are exempted from the obligation of labelling them with a list of ingredients including the provision of allergen information. This is because it is expected that the customer is able to speak with the person who made or packed the product to ask about ingredients. All mandatory allergen ingredients information (the 14) should be available and easily accessible for the consumer and this can be communicated through a variety of means to suit the business format of the food business operator.

 

If you have any further information, please contact our helpline on: 01252 542029 or [email protected].