2012 Impact report

The difference

we make

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The Anaphylaxis Campaign

makes me feel ggrateful. It

makes me feel like I’m not

alone. It makes me feel like I’m

not different. It makes me feel

happy. It makes me feel

supported. It makes me feel

part of a big family of people

aall fighting the same battle.

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Peanut allergy cases alone have ttripled in the last decade

1 in 50 children in the UK has a food allergy

30,000 cases of hospitalisation due to

anaphylaxis every year

Every year there are ddozens of deaths recorded from anaphylaxis. These

figures do not tell the whole story, as the classification system is flawed and

assigns other triggers as ultimate cause of death

The problem

Recent research has shown that allergies of

aall kinds are on the increase

Survival rates of anaphylaxis are extremely high but there are lessons to be learnt as mmany still die

unnecessarily

1 allergy doctor for every 2 million people

Anaphylaxis is an eextreme and ssevere allergic reaction. The whole body is affected, often within minutes of exposure to the substance causing the

allergic reaction. Symptoms include rashes, swelling of the mouth and throat, abdominal pain and vomiting, a sudden feeling of weakness and collapse and

unconsciousness amongst others

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We are the Anaphylaxis Campaign. We are the oonly UK wwide charity operating solely for the ggrowing numbers oof people at risk from severe allergic reactions (anaphylaxis). We do this by providing information and support of the highest quality relating to foods and other triggers such as latex, drugs and insect stings. Our ultimate aim is to ccreate a safe environment for all ppeople with allergies by educating the food industry, schools, nurses, colleges, health professionals and other key audiences. Our focus is on medical facts, food labelling, risk reduction and allergen management. The Campaign runs a helpline service five days a week, provides patient representation and, of course, we campaign. We also provide tailored membership services for individuals, healthcare professionals and also have a corporate membership programme. All you need to know can be found on our website

www.anaphylaxis.org.uk.

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Who we are The Anaphylaxis Campaign

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Along with several other founder members, I launched the Anaphylaxis Campaign in January 1994. At this time, there were four deaths of very young people in a short space of time from allergic reactions.

The founder members of the Campaign were all people who were affected in some way by severe allergies. Our primary objective was to save lives.

Today, the Campaign has grown into a wide reaching network of individuals, healthcare professionals and companies all interested in learning more about severe allergy, but we still have a way to go to achieve safety and security for those affected.

Our aim remains to create a safe environment for those affected by anaphylaxis.

Our roots David Reading, our founder

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…Produced and distributed over 3,500 educational and fundraising materials to schools, nurseries, allergy clinics and individuals…

…Sent out almost 40,000 individual product alerts, ensuring

member safety from labelling and packaging errors… …Ran workshops attended by over 2250 allergy patients, families and carers, helping them to better manage their allergy and indirectly benefitting around 1,000 people…

…Ran events and conferences, attended by over 500 healthcare

professionals, food companies and trade organisations... …Conducted a survey of over 5500 young people aged between 15 and 25 to gather their opinions and concerns about living with a severe, life threatening allergy…

In 2012, we…

…And much more!

In a nutshell 2012 at a glance

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In 2012, we were joined by 3330 new members, bringing our individual membership to a grand total of 5,700. Our members join thousands of other families and individuals who are managing severe allergies every day. We promise to provide our members with the knowledge, support and guidance to manage severe allergies with confidence.

The Anaphylaxis Campaign makes me feel…

…supported, nnot alone in managing my child’s allergies, proud to support their

wonderful work.

…HHopeful that one day enough awareness will be raised that

when my son is out in this scary world by himself, there will be

enough information in places for him to make the safest choices

possible.

…iinformed and part of a community of

people all coping with the same challenges.

…less alone with my condition and

less of a freak.

Not so

isolated

Safer

…EEmpowered... The Anaphylaxis

Campaign has taught me how to understand

and live with my allergies, I am now

able to understand the issues that they cause

me to face.

Understood

Positive

You’re not alone Supporting people with severe allergies

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Danika was nearly four when she was diagnosed with a severe nut allergy…We decided to go private as the NHS waiting list was two years, and met with a consultant where we learnt the hard, cold facts about anaphylaxis.

I was stunned. All I could think of was the times that she had been left at friends' houses and parties and how we had eaten at restaurants and how lucky we'd been so far. It seemed as if she was a ticking time bomb! Our other children were then tested and our son tested positive to nuts and peanuts - hearing that was devastating and a complete shock.

When we found out about the allergies we joined the Anaphylaxis Campaign who have provided us with ongoing information and support.

My worry as a mother never goes.

Mike and Karen are the parents of three children; two have nut allergies. They have been members the Anaphylaxis Campaign for 11 years. Here, they tell us about their journey, from diagnosis to getting involved with the Anaphylaxis Campaign.

Mike & Karen’s story Living with anaphylaxis

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“great

practical solutions

“I met people

like me

We held 112 workshops in 2012 with over 2250 parents and young people with life-threatening allergies attending. The wider impacts of the stresses of managing severe allergy on extended family and support networks, means these have indirectly benefited around 1,000 individuals. We also orchestrate a nationwide network of support groups for older individuals and have even put families in contact directly to share experiences.

In 2012

“relaxed and

empowered

Working it out Workshops & support groups

Of young people said

that they were ‘likely or very likely’ to take

more responsibility for managing

their severe allergy after

attending

92%

Of young people valued attending the workshop because of the help and support they received 96%

Of parents said that their confidence in managing their child’s

severe allergy had increased as a result of

attending

66%

Of young people felt ‘more or very’ confident in managing their severe allergy after attending

93% Of parents felt

that it was ‘valuable or very

valuable’ to share experiences by meeting others

like them

97%

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In 2012, 110 new companies joined our 1120 strong corporate membership programme. Our relationship is dynamic; they provide invaluable support to our work and in return, we provide them with the best quality information and advice on how to manage allergy in manufacture, production and labelling. We help shape how industry views and responds to allergy.

“Extremely relevant content

from knowledgeable speakers.

“Excellent technical

speakers.

In 2012

Getting down to business Working with the food industry

Feedback on our Corporate Conferences in 2012

Who we are influencing

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…and more

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To bridge gaps in current NHS provision, we ensure doctors, nurses, dietitians and other clinical staff have the best access to the latest information on allergy treatment, care and research. Every year we bring together healthcare professionals at our annual conference to exchange ideas and information on severe allergy. We are in direct contact with 1126 allergy clinics, promoting our support services and whom we endorse via our helpline and engagements with allergy patients.

AllergyWise made me realise just how much more I know

about allergy now after doing the training than I did before I started the

course, when I knew nothing!

Our nurse specialists

have undertaken the online training for healthcare

professionals. The course content is excellent and very comprehensive. I'm sure that

the package for families, carers and individuals is just

as well presented. We recommend it to our

complex allergy patients.

Bridging the gap Bringing patients & services together

220 new healthcare professional members

1 allerrgy doctor to every two million people in the UK

Only 228% of 15 – 25 year olds were currently

under specialist allergy care

98% of those who responded to our

professional member survey

found our newsletters and

online information very

useful

”

In 2012

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We are proud of our AllergyWise online training courses. Available in three versions for Individuals & Carers, Healthcare Professionals and GPs & Practice Nurses, they contain advice on managing serious allergies, reactions and emergencies.

…1131 individuals and families have benefitted from our Individuals & Carers course …6600 Healthcare Professionals

have taken our course to date

…Our GPs & Practice Nurses course has been taken by 551 GP practices already after launch in

October 2012

By 2012…

…And for every oone of the Healthcare Professional AllergyWise courses completed, the training is cascaded to approximately 45 other people using the resources on the course. Overall, this means 225,000 people will have benefitted directly from the Healthcare Professional course alone since it first started in 2010.

Sharing the knowledgeAllergyWise online training courses

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Our helpline team provide a listening ear and advice to anyone who asks. More than 225% of enquiries were medical-related queries, whilst 118% were general questions about anaphylaxis and 8% were on the topic of travel. The volume of queries and content reveals a clear lack of information from other sources, including the NHS, a gap which we help to bridge. Our helpline is not just for members, but all those interested in allergy. Only half of the calls and emails were from members demonstrating a wide reach beyond our membership.

“very friendly

and patient 5% of calls

from schools

“ brilliant ”

“invaluable advice”

2200 ccalls and 11100 emails answered by the helpline

team

15% of calls from medical

staff with queries

“ fabulous ”

Almost 440, 000 individual alerts sent to allergic

consumers for product recalls by companies where

there had been mislabelling or contamination

In 2012

Help! Helpline services

5% of calls from

companies and the food industry

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We represent the voice of the patient in a number of ways, through media coverage to business consultation, from academic and medical research to legislation. Our contact with those affected by severe allergy is key to this representation as it is our gateway to understanding what it is like to live with it. In this way, we can inform how studies are set up and what research protocols should be used.

In 2012, we…

… represented the ‘patient voice’ on a number of forums and

research projects. A new adrenaline auto-injector was

introduced and we were a key representative on the

consultative advisory board for this development. We were also involved in reviewing research proposals being undertaken at

Universities in Newcastle, Brighton and Southampton…

…worked in conjunction with the National Allergy Strategy Group to

lobby parliament & key MPs, including a successful letter writing campaign

and provided support at multiple meetings of the All Party

Parliamentary Group for Allergy. Issues highlighted have included

improvements to allergy education in primary care, the need for increased access to NHS care and developing

allergy services…

Speaking out Campaigning & representation

…and much more!

…represented tthe consumer perspective in

tthe new EU Food Information

Regulation (FIR) legislation

coming into force in 2014…

…undertook a survey of over 500 young people aged 15 to 25 published in

Clinical & Translational Allergy, asking wwhat it is like living with severe allergy

at this age, with the results underpinning oour 2013 strategies…

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Spreading information and awareness is a huge part of what we do. In 2012 we stepped up our communications with severely allergic individuals to ensure everyone has access to the best information on anaphylaxis. We did this through traditional media, but also through a focus on new social media. Ultimately this will not only increase awareness overall, but also engage more severely allergic young people specifically, who are a particularly at-risk group.

We had over 1,000 followers

on Twitter by November 2012,

helping us extend our reach beyond membership. We

upped our engagement with

Twitter by 11 times between

January 2012 and December 2012.

In the spring of 2012, we launched our revamped website. We received almost 60, 000 hits from its

launch, but this figure continues to grow, as we received almost 30, 000 hits, half 2012’s annual

number, in the first quarter of 2013, demonstrating an ever increasing awareness of the organisation

and growing online presence.

In 2012

Reaching out Awareness & engagement

Our Facebook likes iincreased by 600 to 1,769 in December

22012. The number of people we were able tto reach through our

Facebook interactions subsequently

increased by almost 5000 people

We received…

Mention in 4 national publications

Several regional features

Numerous local paper stories

Citations in 2 trade journals

A wealth of other online mmentions from bloggers and smaller publications

… All raising awareness and the profile of

anaphylaxis.

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Because we are the only UK-wide charity that focuses exclusively on the most severe allergies, our fundraisers are exceptionally dedicated and enthusiastic and we cannot thank them enough. In a year where 990% of charities experienced reductions in income, we ramped up engagement, working diligently to provide our supporters with new ways to get involved. As a result, we were delighted to see an increase in our fundraising income in 2012.

In 2012 Over 330 runners ran over 5560 miles in our signature orange

vests for us, including 66 London Marathon runners raising oover

£12, 000 between them

200 people wore orange wigs for us as part of our Orange Wig day 2012, including school children, teachers and

nurses, healthcare professionals, office workers and families, all in support of us We sold over

3,000 packs of Christmas cards, raising almost £11, 000 and over 14, 000

Christmas raffle tickets, raising

over £7,000

There were also a whole host of other events organized on

our behalf, including a music concert, golf

tournament and theatre evening amongst others,

collectively raising £55, 000

Friends & supporters Fundraising

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Funding our work Income & expenditure

Income in 2012: £537,430

Expenditure in 2012: £503,587

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2012 saw us supporting people with severe allergy in more ways than ever, meaning we’ve come closer to our ultimate aim of creating a safe environment for all people affected by anaphylaxis. This was achieved with significant engagement from our supporters and sustained funding despite a challenging economic environment. In 2013 we will continue to focus on increasing awareness and understanding of anaphylaxis across all arenas, including schools,

GP surgeries and pharmacies through our AllergyWise online training programmes. We also intend to raise the profile of anaphylaxis even further in the mainstream media, through campaigns around key aspects of this condition. These include eating out and the availability of emergency medication and highlighting these problem areas helps us to support the most at risk group, teenagers and young adults, following the results of our 2012 youth survey. 2013 will also see us continue to become involved in a range of research projects across the UK including those looking into extrinsic factors affecting allergic reactions, online interventions to support teenagers and young adults, and the largest ever pan-European investigation into food allergy hosted in this country by Manchester University. All of this will be alongside our continuing core work of providing information and support of the highest quality through our website, social media, helpline, workshops and support groups. As we receive no government funding, all this is only possible with the support of our members - individual, healthcare professional and corporate - the tireless efforts of fundraisers on our behalf and with the generous donations we receive from trusts. Please continue to support us.

Looking forward Lynne Regent, Anaphylaxis Campaign CEO

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We want to show our gratitude to all those who have helped us throughout 2012, from our members and friends, fundraisers and trusts, our experts and trustees to the staff and all that we collaborated with in 2012. It is only with all your help that we can fulfill our mission to support people with severe allergy.

A big thank you

A W Lymn Rose Centeenary Foundation

ALK Abello UK Allergy Therapeutics

Allied Irish Bank Austin Hope Pilkington Charitable

Trust Barbara Ward Children's Foundation

B-CH 1971 Charitable Trust Boots The Chemist

Chapman Charitable Trust D M G Roper Charitable Trust

Danone Debenhams

D'Oyly Carte Charitable Foundation Dey Pharma

Food and Drink Federation Food Standards Agency

Grand Charity Hedley Foundation

Higher Mutlow Charitable Trust Hospital Saturday Fund

Hugh Fraser Foundation Kelloggs

Kinnerton Confectionery Kraft Foods

Lady Jardine Charitable Trust Leatherhead Food international

Marsh Christian Trust Mead Johnson Nutrition

MEDA N & P Hartley Memorial Trust

Neogen Europe NSF International

Nutricia Ltd Percy Hedley 1990 Charitable Trust

Qadex R-Biopharm Rhone

Reading Scientific Services Ltd Robertson Trust Romer Labs UK

Schroder Charity Trust Sovereign Healthcare Charitable

Trust Staples Trust

Storrow Scott Charitable Trust The Milbourn Charitable Trust

Waitrose

Special thanks to…

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Any questions? We’d love to hear from you!

Get in touch Contact us

Our HQ

Anaphylaxis Campaign

1 Alexandra Road Farnborough Hampshire GU14 6BU Tel: +44 (0)1252 546100 Fax: +44 (0)1252 377140

Our helpline

Call us on 01252 542029

or email info@anaphylaxis.org.uk

The social stuff

Search ‘Anaphylaxis Campaign’ on LinkedIn

Search ‘‘Anaphylaaxis Campaign’ on Facebook

Follow us @Anaphylaxiscoms

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