Anaphylaxis Campaign

Supporting people at risk of severe allergies

Important information relating to the recent EpiPen recall

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Update:  5th April 2017

You may have seen reports on social media regarding EpiPens and withdrawals of certain batches in the US and other countries.  We are continuing to monitor this issue and we are in contact with MEDA who distribute EpiPens in the UK to see if this affects batches in the UK.

We will keep you updated

 

Update 25th March 2017

MEDA the company who distribute EpiPens in the UK have now released a statement and shared this with the Anaphylaxis Campaign.  You can read this below.

We will continue to keep you updated on this issue. If you have any queries please contact our helpline – 01252 542029, [email protected] or contact MEDA directly [email protected]

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Statement from MEDA

 

 

EpiPen® 300 microgram – Recall of batch 5FA665 (not distributed in the UK)

You may have heard about a recall in some countries in Europe and Asia for one batch of the EpiPen® 300 microgram dose.  This batch was not distributed in the UK by Meda Pharma UK.

Meda is committed to the highest standards of patient safety and product quality.

EpiPen® (Adrenaline Autoinjector) is an autoinjector containing adrenaline which is used for emergency treatment of severe allergic reaction (anaphylaxis), more than 1 million patients depend on this life-saving device in Europe.

Recently, Meda received two complaints regarding the EpiPen® 300 microgram device for lot number 5FA665 from other countries than the UK.   The affected batch was distributed last year, and expires Feb-May 2017.

On the basis of an investigation conducted by the manufacturer Meridian Medical Technologies (MMT) it has been observed that there may be a very small probability in lot 5FA665 that the auto-injector may not work correctly.  This voluntary recall applies ONLY to lot 5FA665.

At this time, the rest of manufactured lots are not affected. The lot number is printed onto the EpiPen® and the box.

For more information: Email: [email protected]

Adverse events should be reported.  Reporting forms and information can be found at www.mhra.gov.uk/yellowcard.  Adverse events should also be reported to Meda’s Medical Information line on 01748 828810.

#TakeTheKit Campaign shows lifesaving results

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In July 2015 the Anaphylaxis Campaign launched #TakeTheKit – a hard hitting film to highlight to teenagers with severe allergies the importance of always carrying their Adrenaline Auto-Injectors (AAIs).  We are thrilled that a recent survey has demonstrated a 39% increase in the number now carrying their AAIs since the launch of the film.

AAIs are the lifesaving emergency medical devices used to treat the symptoms of anaphylaxis until the affected person is treated by paramedics.  The brands currently available in the UK are EpiPen, Jext and Emerade.

The rate of hospitalisations due to anaphylaxis has increased dramatically over the past 21 years. Teenagers and people in their 20s are most at risk from these severe and life threatening reactions. (Ref 2).

#TakeTheKit was created after results from our Youth Survey in 2012 (Ref 1) revealed that only 33%, of the respondents carried their Adrenaline Auto-Injectors (AAIs) at all times.  A recent similar survey which ran in February 2017 has shown that 72% of the respondents said they carried their AAIs.  This is an increase of 39%.

Lynne Regent CEO Anaphylaxis Campaign said, “We are encouraged to see a marked increase of young people now carrying their adrenaline following the launch of this film.  Teenagers and young people are a particular risk group of fatal anaphylaxis which is why we worked so hard to get this film made.  Please continue to share the film with your friends and family so more people are aware of the severity of allergies.”

The film was produced by Bare Films, a London based multi award winning production company.  The film was the idea of Peers Carter and Tony Muranka, established creative directors who have also worked with Combat Stress and The Motor Neurone Disease Association.

Watch a film with the director and creative directors explaining how the film was made


Post production was very kindly provided by Oscar winners The FrameStore and Simon Tubbs from the The Motion Design Company.  Editing work was also very generously provided by Sacha Szwarc at Speade. The voice over was provided by EastEnder’s actress Rachel Bright.

Tried and Trusted – 5 stars for Zizzi in Norwich

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We’ve received a five-star review for Zizzi in Norwich.  The reviewer tells us  “it is the only time I have been in a restaurant and felt relaxed”.

Great to hear that some restaurants and their staff are getting it right for allergic customers!

Anaphylaxis Campaign members can read the full review and search for restaurants, hotels and more on Tried and Trusted.

https://www.anaphylaxis.org.uk/tried-and-trusted-reviews/

Well done Tom!

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Tom Sloan has taken on the enormous challenge of completing one fundraising event every month for the rest of the year!

March’s event was last weekend’s South Wales Three Peaks Trial, which took Tom on a 20 mile, 5000 foot ascent over three prominent peaks: Blorenge, Sugar Loaf and Skirrid.

Thank you so much Tom! We’ll keep you up-to-date on Tom’s future events and hope you will show him your support.

Do you carry an EpiPen? Check the batch number

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UPDATE 14.45pm 24/3/2017

After further consultation with the EpiPen distributors this morning, we have been advised that the batch affected by the recall is Lot 5FA665, with expiry dates of March, April, or May 2017.

If you have or if your child has an EpiPen 300 mcg with a Lot/Batch code beginning 5FA665 and with an Expiry date of March, April or May 2017, return it immediately to the pharmacy for a replacement.

 

The Anaphylaxis Campaign is aware an EpiPen from a recalled batch has been found in the UK.  We are in constant communication with the UK distributors of EpiPen to get updates.  Please read the vital message below.

If your/your child’s EpiPen matches one of the numbers below return it to your pharmacist immediately for a replacement. Please also take a photo of the affected EpiPen with the batch number showing and email it to us [email protected]is.org.uk.

Please remember to check the EpiPens that are held by your child’s school.

Affected batches that we are aware of:

5FA665G May 2017 (EpiPen 300mcg)

5FA665 April 2017 (EpiPen 300mcg)

5FA6651 April 2017 (EpiPen 300mcg)

5FA6652 April 2017 (EpiPen 300mcg)

5FA6653 April 2017 (EpiPen 300mcg)

We are awaiting a full list of the recalled batches from the distributors, and if there are more batches affected we will update you.

We believe this to be an isolated incident and understand that faulty EpiPens have not been directly distributed in the UK.

We will continue to keep you updated on this issue. If you have any queries please contact our helpline – 01252 542029, [email protected]

Written Declaration 115 Campaign on Chronic Respiratory Diseases

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The European Parliament Interest Group on Allergy and Asthma, coordinated by European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) and EAACI, is initiating a Political Call to Action addressed to EU and National policy makers, and civil society stakeholders to act on Allergy and Asthma in Europe.

The EFA is an alliance of 41 allergy, asthma and COPD patients’ organisations, representing more than half million patients in Europe.  The Anaphylaxis Campaign is part of this alliance.

The Call to Action aims to drive changes in policy making and programmatic responses to allergy and asthma at EU and national level, and is calling for positive policy changes regarding:

  • Public health – implementing European strategies and programmes across Member States
  • Funding for research –- advancing our understanding of allergy and asthma
  • Prevention and early diagnosis – achieving early detection for timely and effective treatment
  • Root cause analysis of diseases – addressing underlying triggers such as air quality, food allergens, chemicals
  • Personalised medicine – working towards pioneering individualised treatment and putting patients as individuals at the centre
  • Economic benefit – reducing direct and indirect costs on health systems and society

The EU policy areas covered are health, outdoor and indoor air quality, food safety, and chemicals.

The Call to Action will be launched at the European Parliament on Tuesday 25 April (18h-20h) during a dedicated event of the European Parliament Interest Group.

The Anaphylaxis Campaign has endorsed the Call to Action by adding our logo to the list of initial endorsers prior to the launch event of April 25th.

You can follow the EFA on twitter – @EFA_Patients and their website – http://www.efanet.org/

 

Food Standard’s Agency’s (FSA) board meeting

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Moira Austen, Information Manager at the Anaphylaxis Campaign, attended the open Board Meeting of the Food Standards Agency (FSA) last Wednesday. One of the agenda items related to the FSA’s Food Allergy and Intolerance Programme and included a request for the Board to shift the emphasis of the research programme from food allergy in infants and children to adults.

The item was well received by the Board, although they suggested that the focus on adult food allergy might be in addition to a continued focus on food allergy in infants and children and not instead of it.

At the end of the meeting, there was an opportunity to ask questions or make comments.  Moira Austin  thanked the FSA for the great work they do supporting those with food allergy and in particular the food allergy branch.  The Anaphylaxis Campaign welcomed the focus on adult food allergy and mentioned that the charity’s focus in 2017 was to draw attention to the need for improved adult allergy services.  Initiatives taken forward by the Anaphylaxis Campaign as part of this work include our Adult Allergy 2017 Campaign, our new allergy care pathway for patients and our Anaphylaxis Information Matters campaign.

The Anaphylaxis Campaign is pleased to link closely with the FSA Allergy team who are undertaking excellent work in this area      

The Board meeting is available as a video-on-demand here.

 

Our new allergy awareness campaign urges people to ‘bee resistant’ this summer

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‘My GP told me I may never have woken up’: oblivious to the potentially life-threatening allergic reaction he had suffered, Simon was lucky to be alive after falling asleep following a seemingly innocuous bee sting.

A national campaign supported by us, is kicking off this summer to highlight the dangers of anaphylaxis from wasp and bee stings – and the importance of awareness, prevention and treatment to beat the condition.

Lynne Regent, CEO, Anaphylaxis Campaign said: “Summer is about enjoying the outdoors and the warm weather but for those who have experienced a serious allergic reaction to bee or wasp stings it’s a time of increased anxiety as the chances of getting stung – potentially fatally – significantly increase.bee

“The Bee Resistant campaign is about raising awareness of anaphylaxis and educating the public on the dangers and symptoms to look out for, as well as the treatments that are available that can dramatically reduce the potentially life-threatening effects of getting stung.”

Usually, stings from bees and wasps only cause small reactions, which although painful, are not dangerous. However, according to the NHS, nearly one in 100 people are at risk of allergic reactions and a small number of these will go onto develop anaphylaxis1.

The National Institute for Health and Clinical Excellence (NICE) states stings caused more than 70% of all deaths from anaphylaxis in the UK between 1992 and 20012. For one keen bee keeper, this became all too real when he was stung by a bee in the summer of last year.

For most beekeepers, the thought of getting a serious allergic reaction to a bee sting is far from the focus of their attention. Experienced beekeepers will tell you that honey bees are generally docile and seldom sting unless provoked. But for keen beekeeper Simon Cavill (55) a seemingly innocuous sting led to a potentially life-threatening allergic reaction.

“I started beekeeping 13 years ago and had been stung plenty of times before with no real side effects,” said Simon, who lives with his wife and two children near Basingstoke, Hampshire.

“Then one day, I was beekeeping as usual and was stung by a honey bee. This wasn’t that much of a shock as it comes as part of the territory. However, unlike a normal localised reaction, I started to come out in hives and a rash all over my body.”

“I started to feel quite unwell and due to the reaction having spread all over my body, I took a double dose of antihistamines and went to bed thinking that I’d be better in the morning.”

Unbeknownst to Simon, he had actually suffered a severe and potentially fatal anaphylactic reaction. 1% of the UK population is at risk of an allergic reaction and a small number of this experience potentially life-threatening allergic symptoms of anaphylaxis1, but like Simon, most are unaware they are at risk.

“I woke up the next morning and didn’t feel at all well, so went straight to my GP. When I arrived she diagnosed my symptoms as anaphylaxis and told me that I was lucky to have woken up that morning. It was quite a shock when she told me that, I had no idea it was that serious.” He added.

Fortunately for Simon, he was referred to the Royal Surrey County Hospital in Guildford where he started undergoing immunotherapy treatment. Venom immunotherapy treatment is a three to five year treatment course in which people like Simon are given injections of gradually increasing doses of the relevant purified bee or wasp venom to build their resistance. It starts with very low doses and has to be administered in specialist clinics by medical professionals – there are about 60 NHS specialist allergy centers around the UK.

Simon is due to complete his treatment at the end of the year and it’s helped him to feel much more confident whilst beekeeping.

“I’ve been stung a few times recently with no ill effect, but I do still try and avoid getting stung wherever possible! I’ve introduced my now 17 year old daughter to beekeeping when she was seven and she loves it, in fact she’s represented England in several national beekeeper competitions – she’s very aware of the risk around anaphylaxis now which makes me feel a lot better.” He said.

Now an expert beekeeper and Trustee for the British Beekeeper’s Association, Simon founded Bee Good, an award-winning natural skincare brand.

“As a keen beekeeper I had a lot of honey and excess beeswax around, so I decided to put it to good use. We founded Bee Good in 2008 and it’s been a great success winning numerous awards and is now sold through several national retailers.” Said Simon.

Dr. Patrick Yong, Consultant Immunologist from the Royal Surrey County Hospital where Simon is undergoing treatment, said: “We have quite a number of patients in Surrey and the surrounding areas undergoing a similar treatment. Bee venom patients, like Simon, who are often outside, can have their lives severely affected by the anxiety of suffering another life threatening reaction to a sting.

“Thankfully, treatments that are available can reassure them that they are far less likely to have a severe reaction if stung again and they can enjoy a summer of beekeeping without having to worry.”

“Venom anaphylaxis is serious and can be life threatening. I would advise anyone who has had a severe reaction to a bee or wasp sting to visit their GP for medical advice and ask to be referred to an allergy clinic.”

Symptoms of anaphylaxis include itching commonly affecting the palms, soles, groin area and scalp, generalised hives, swelling of the lips, tongue or throat, difficulty in breathing, tightness in the chest, faintness or dizziness and a feeling of fear or impending doom.

In case of an emergency:

  • If an adrenaline device is available, use it without delay if you believe the reaction is severe, or becoming severe
  • Dial 999 and call an ambulance immediately
  • Keep the patient lying down
  • If they recover quickly, it is still important to go to hospital for observation or visit their GP in case of delayed or repeated reactions

Local (i.e. at the site of the sting) allergic reactions do not require emergency treatment, cold compresses or pain killers can be used to quell the burning sensation caused by the sting. Keeping a swollen limb elevated can also help to ease the pain and antihistamines can be taken to help reduce swelling and itching. For people who suffer from a large local reaction, steroids can help to speed up the healing process. The earlier they are used the more effective they are. In the case of a larger reaction which may require steroids, always seek advice from a doctor or nurse first.

To find out more about the campaign visit www.beeresistant.com or follow them on Twitter @BeeResistant. If you are concerned about anaphylaxis, visit your GP or contact the Anaphylaxis Campaign on 01252 542029.

Health in Schools in Wales

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The National Assembly’s Children, Young People and Education Committee are looking at the Welsh Government’s proposal for a new law: the Additional Learning Needs and Education Tribunal (Wales) Bill.

The proposed new law will replace the current term ‘Special Educational Needs’ (SEN) with ‘Additional Learning Needs’ (ALN); it will remove the system of statements and instead give every learner with ALN the same type of Individual Development Plan; require local government and health bodies to work more closely together; and improve the information and advice on offer to families.

At the moment, the reforms don’t include medical conditions. There is now an opportunity for children with medical conditions at schools to have the same protection in legislation as those with disabilities, learning difficulties and sensory impairments. We are working for this change, partnering with other leading health and children’s organisations in Wales to recommend that children with medical conditions are included. Welsh Government has said that if there’s a desire for it to be included, then it will reconsider its position.

Almost everyone believes the system for helping children and young people with these needs must be improved and the Welsh Government recognises this too. Now that there is a proposed new law to consider, Committee members at the Assembly want to hear from as many people as possible.

The survey below is a chance for you to tell them what you think about the way people and organisations working with children and young people should give them extra support with their learning, where they need this.

https://www.surveymonkey.co.uk/r/ALNET-Families?platform=hootsuite

Please complete the survey about your child or your experience of support in school. There is a free text box at the end where you can let the Committee know that you are responding about a medical condition and ask for this group to be included in the reforms. Please include this information, as well as any other useful background information for the Committee. This will help them to see why this is such an important issue.

The Anaphylaxis Campaign is an integral part of this campaign and our National Coordinator Mandy East will be giving evidence at the Welsh Assembly when they hear the Bill next month. If you would like to write to your AM about this issue and need any extra help or information please contact us at [email protected]

 

We are thrilled to have won two Global Health & Pharma (GHP) magazine 2017 Social Care Awards

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The 2017 Social Care Awards have been designed to give recognition to the individuals, teams and companies responsible for showing the highest level of care, compassion and courage in one of the most important, yet challenging, industries.

The Anaphylaxis Campaign won the awards for Best Anaphylaxis Support NPO – UK & Best Anaphylaxis Awareness Campaign: Anaphylaxis Information Matters (AIM).

GHP is rewarding outstanding service and innovation within the field of social care in order to celebrate the industry’s finest and bravest. It recognises those who selflessly and generously donate their time and effort to look after others, without ever asking for recognition or commendation.

Speaking about the awards, Coordinator Eleanor Homes commented: “In social care the need for excellence in care is ever more pressing, and as such it has been a real honour to be able to showcase the hard work and dedication of every one of our award winners. I would like to wish them the best of luck going forward and hope they stay in touch.”

GHP prides itself on the validity of its awards and winners. The awards are given solely on merit and are awarded to commend those most deserving for their ingenuity and hard work, distinguishing them from their competitors and proving them worthy of recognition.