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The difference we make

2012 Impact report _ |

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The Anaphylaxis Campaign

makes me feel grateful. 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 all fighting the same battle.

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The problem Anaphylaxis is an extreme and severe 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

Peanut allergy cases alone have t ripled in the last decade

1 allergy doctor for every 2 million people

Recent research has shown that allergies of all kinds are on the increase

30,000 cases of hospitalisation due to anaphylaxis every year

1 in 50 children in the UK has a food allergy

Every year there are d ozens 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

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

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Who we are The Anaphylaxis Campaign

“

We are the Anaphylaxis Campaign. We are the o nly UK wide charity operating solely for the g rowing numbers of 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 create a safe environment for all p eople 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

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www.anaphylaxis.org.uk. _ |

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Our roots David Reading, our founder

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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.

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In a nutshell 2012 at a glance

In 2012, we… …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 2 50 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 5 00 young people aged between 15 and 25 to gather their opinions and concerns about living with a severe, life threatening allergy…

…And much more! _ |

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You’re not alone Supporting people with severe allergies In 2012, we were joined by 3 30 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.

…H Hopeful 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.

Positive

…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.

…iinformed and part of a community of people all coping with the same challenges.

Safer

Understood

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The Anaphylaxis Campaign makes me feel…

…less alone with my condition and less of a freak. …supported, not alone in managing my child’s allergies, proud to support their wonderful work.

Not so isolated

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Mike & Karen’s story Living with anaphylaxis 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.

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.

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Working it out Workshops & support groups We held 12 workshops in 2012 with over 2 50 parents and young people with lifethreatening 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 “great practical solutions ”

Of young people felt ‘more or very’ confident in 93% managing their severe allergy after attending

“relaxed and empowered”

Of parents felt 97% that it was ‘valuable or very valuable’ to share experiences by meeting others like them

66%

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

96%

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“I met people like me ”

Of parents said that their confidence in managing their child’s severe allergy had increased as a result of attending

92%

Of young people said that they were ‘likely or very likely’ to take more responsibility for managing their severe allergy after attending

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Getting down to business Working with the food industry In 2012, 1 0 new companies joined our 120 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.

In 2012 “Extremely relevant content from knowledgeable speakers.

Feedback on our Corporate Conferences in 2012

Who we are influencing

“Excellent technical speakers. ” …and more _ |

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Bridging the gap Bringing patients & services together 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 126 allergy clinics, promoting our support services and whom we endorse via our helpline and engagements with allergy patients.

In 2012 “ AllergyWise made

1 allerrgy doctor to every two million people in the UK

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!

98% of those who responded to our professional member survey found our newsletters and online information very useful

Our nurse specialists “ have undertaken the online

Only 28% of 15 – 25 year olds were currently under specialist allergy care 220 new healthcare professional members

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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.

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Sharing the knowledge AllergyWise online training courses 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.

By 2012…

…6 600 Healthcare Professionals have taken our course to date

…1 131 individuals and families have benefitted from our Individuals & Carers course

…Our GPs & Practice Nurses course has been taken by 51 GP practices already after launch in October 2012

…And for every o ne 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 2 5,000 people will have benefitted directly from the Healthcare Professional course alone since it first started in 2010.

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Help! Helpline services Our helpline team provide a listening ear and advice to anyone who asks. More than 25% of enquiries were medical-related queries, whilst 1 8% 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.

In 2012

Almost 40, 000 individual alerts sent to allergic consumers for product recalls by companies where there had been mislabelling or contamination

“ brilliant ”

“invaluable advice” 2200 calls and 1 100 emails answered by the helpline team

15% of calls from medical staff with queries

“ fabulous ”

“very friendly and patient ” _ |

5% of calls from schools

5% of calls from companies and the food industry

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Speaking out Campaigning & representation 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 t he consumer perspective in t he new EU Food Information Regulation (FIR) legislation coming into force in 2014…

… 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…

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…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…

…undertook a survey of over 500 young people aged 15 to 25 published in Clinical & Translational Allergy, asking what it is like living with severe allergy at this age, with the results underpinning our 2013 strategies…

…and much more! _ |


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Reaching out Awareness & engagement 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.

In 2012 Our Facebook likes increased by 600 to 1,769 in December 2012. The number of people we were able to reach through our Facebook interactions subsequently increased by almost 5000 people

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.

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We received…

Mention in 4 national publications Several regional features

Numerous local paper stories Citations in 2 trade journals A wealth of other online mentions from bloggers and smaller publications

… All raising awareness and the profile of anaphylaxis.

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Friends & supporters Fundraising 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 90% 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

We sold over 3,000 packs of Christmas cards, raising almost £11, 000 and over 14, 000 Christmas raffle tickets, raising over £7,000

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Over 30 runners ran over 560 miles in our signature orange vests for us, including 6 London Marathon runners raising over £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

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

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Funding our work Income & expenditure

Income in 2012: ÂŁ537,430

Expenditure in 2012: ÂŁ503,587

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Looking forward Lynne Regent, Anaphylaxis Campaign CEO

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.

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A big thank you 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.

Special thanks to‌ A W Lymn Rose Cente enary 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

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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

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Get in touch Contact us Any questions? We’d love to hear from you!

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 ‘Anaphyla axis Campaign’ on Facebook

Follow us @Anaphylaxiscoms

Search ‘Anaphylaxis Campaign’ on LinkedIn

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Anaphylaxis Impact Report