impact report 2013
DESCRIPTION
Anaphylaxis CampaignTRANSCRIPT
Impact Report
The
Difference
We Make
2013
5—8 % of
children have
a food allergy
Over 30,000
hospitalisations due to anaphylaxis every year
Peanut
allergy cases
alone have
tripled
Hospital
admissions for
children with food
allergies have risen
five times in the
last 20 years
Only 36 allergy
specialists in the UK for a population of
60 million
2—4 % of adults have a food allergy
Anaphylaxis: The facts
In 2013...
What we do
We are the only UK-wide charity solely supporting people at risk from severe allergic reactions and anaphylaxis. For over 20 years we have provided information and support of the highest quality to patients and their families.
Our ultimate aim is to create a safe environment for all people with allergies by educating the food industry, schools, pre-schools, colleges, health professionals and other key audiences. Our focus is on medical facts, food labelling, risk reduction and allergen management.
We empower patients, carers and healthcare professionals through our AllergyWise online training and actively campaign for better allergy care and treatments.
We provide tailored services for individual their families, clinical professional and also corporate members through our membership schemes.
David Reading OBE, Co-founder & Vice President
20 years of support
“ In 1993, four people died suddenly in a short space of time from allergic reactions. One of these four was my daughter Sarah, who died after eating a dessert containing peanut in a town centre restaurant. She was just 17. Along with a group of parents, I started a group in January 1994 because so little was known about anaphylaxis. We didn’t know that this type of allergy was life-threatening, nor indeed did many doctors. We called the group the Anaphylaxis Campaign. People had little to no information and what was available was completely inadequate. They were living a nightmare. They desperately wanted to know how to manage the condition. From there, the Campaign has grown, going from strength to strength. Starting the Anaphylaxis Campaign was, for me, a great tribute to Sarah. What we have achieved in the last 20 years has been phenomenal, but we still have a long way to go.
”
Our membership scheme for individuals, families and carers affected by anaphylaxis aims to make managing severe allergies every day a little easier. We promise to provide our members with the knowledge, support and guidance to live with confidence from diagnosis onwards. We provide information not available any where else and send out vital alerts on mislabelled goods containing potentially deadly allergens. We also provide access to a community of individuals and families who know what it’s like to live with anaphylaxis.
We had over 5,000
members including
almost 400 new
members
We sent out
almost
45,000
product alerts via
email and text
We launched a new reviews database Tried & Trusted with over 60 reviews of allergy friendly places
You’re not alone
In 2013...
When my daughter Caitlin first had an anaphylactic reaction five years ago out of the blue, she took it very badly. She didn't want to be different to her friends or carry her medication everywhere. We tried really hard to help her and hide our own concerns. Two years ago, we nearly lost her. We cannot thank the Anaphylaxis Campaign enough for their invaluable support over the last five years. They have always been there to answer any questions or concerns we might have and provide us with updates on a daily basis via their Facebook and website. They have acted on our behalf on a number of issues concerning healthcare, food labelling and restaurants and have kept us constantly updated. Although the allergy is a big part of our lives, Caitlin is now fighting back and she is determined not to let it stop her doing anything. It goes without saying that we could not have been so positive without the Anaphylaxis Campaign’s support.
“
”
Kerry’s story
“
”
Being an adult living with allergies has taught me a lot. Support and services from the medical profession are not great for adults. The psychological effects of having to cook every meal, not being able to go on holiday abroad, never being invited to dinner and having to plan every meal out with military precision are over looked. It’s tough living with the fear that a food could ruin your day, week - or even worse. I think the Anaphylaxis Campaign are a vital line of support for adults with allergies. I know I have found out more from the Campaign’s website, staff and other members with allergies than any doctor. I have really enjoyed being a part of the Campaign and helping build awareness of anaphylaxis, which is still often misunderstood. I am always referring people with anaphylaxis to their website and would definitely recommend joining. Their events are also a great opportunity to meet like minded people who also have allergies and you don’t feel like the freak for once!
Ruth’s story
Help!
Our helpline team provide a listening ear and advice to anyone who calls. The volume of queries and their content reveals a clear lack of information from other sources, including the NHS, a void we help to fill. Our helpline is not just for members, but anyone with an interest in learning more or needing advice. Only half of all calls and emails received are from members, demonstrating a wide reach beyond our membership. Our support team also work with bereaved families and help them cope with the impact of losing a loved one.
We had on-going
contact with 30
bereaved families
and extended our
support to all newly
bereaved families
We received over 2,500 helpline
queries from individuals, food businesses, schools, nurses and more
In 2013...
Our nationwide network of support groups are there for anyone affected by severe allergies, whether allergic themselves or as a parent or carer. Run by our regional volunteers, these groups offer a vital support network and the chance to meet others locally affected by the same issues who understand what it’s like to live with anaphylaxis and swap hints, tips and advice in a friendly, relaxed setting. 2014 will see our support group programme extended even further.
We held 42 support
groups and meet ups
across the country
bringing together
hundreds of people
with severe allergies
We supported 30 group
leaders across the country
We recruited and
trained 10 new
parent support group volunteers
Showing some support
In 2013...
Our workshops for parents and young people with life-threatening allergies cover a range of issues, from explaining anaphylaxis and medication, to tips on eating out, travelling, growing up and letting go. Families gain knowledge, confidence and even some good friends from our sessions. Many see them as vital lifeline in adjusting to independent living with anaphylaxis.
12 workshops
held with over
250 parents and
young people in
attendance
1,000 family
members indirectly
benefitted
After attending 96% of young
people saw carrying emergency
medication as essential
Over 90% of
parents said they
were more confident
in their child’s ability
after one of our
workshops
Working it out
In 2013...
Information & research
From producing factsheets to facilitating small scale research and large scale projects, furthering understanding of allergy and anaphylaxis is a big part of what we do. In 2013, we supported projects both across the UK, from Newcastle to Southampton and internationally, including the world’s biggest study of food allergy. Find out more at www.anaphylaxis.org.uk/whats-happening/research.
We published 7updated
factsheets under the
Information Standard,
bringing our total
library of certified
factsheets to 23
We awarded 3 small
grants for allergy research totalling almost
£10,000 to help
projects improving the lives of those affected by
severe allergy
We supported 5 large scale regional projects through participant recruitment
In 2013...
We work to bridge gaps in current NHS provision to ensure allergy specialists, doctors, nurses, dieticians and other healthcare professionals alike have access to the latest and best information on allergy treatment, care and research. Every year we bring together hundreds of members of this hard to reach group at our annual conferences to exchange ideas and information on severe allergy. We also share knowledge and expertise with every allergy clinic across the country, offering our vital, free support services to all those affected.
Bridging the gap
We were in touch with
over 130 allergy clinics
Over 500 GPs, hospital doctors, practice & school nurses, health visitors, dieticians & more were members Almost 120
healthcare professionals attended our events
Almost 100% of our
professional
members surveyed
said they found our
information &
resources useful
In 2013...
Debbie’s story
As a Nurse in a large Boarding School, I'm responsible for the care of 24 students with severe allergies. When I first took on this role, I found it a daunting challenge – there was no Anaphylaxis policy in place, none of the students had individual care plans, or understood the necessity of carrying their adrenaline at all times. I found support from the Anaphylaxis Campaign, completing the AllergyWise for HCP course, which gave me the knowledge and confidence to develop good, safe working practice and enabled me to train colleagues. I also invited a speaker from the Anaphylaxis Campaign to talk to our students which proved extremely beneficial. I am grateful to the Anaphylaxis Campaign for their invaluable advice and support and would recommend membership to others in my position. Membership of the Anaphylaxis Campaign has opened new doors to me and enabled me to develop my professional practice to the benefit of my students.
“
”
In 2013, 15 new companies joined our almost 130 strong corporate membership. Our relationship is dynamic; they provide invaluable tangible support for our work and in return, we provide best quality, tailored information and advice. We played a vital role in shaping how industry viewed and responded to allergy issues in 2013 and will continue to do so, particularly in the run up to new food labelling regulations coming in to force in December 2014.
130 food retailers,
caterers, pharmaceutical companies and many
more joined us as corporate members
Almost 200 delegates from 100+ companies attended our corporate events
The business end
In 2013...
Waitrose’s story
The work of the Anaphylaxis Campaign is invaluable in bringing us closer to understanding the needs of allergic members of the general public, who need clear labelling and practical help when shopping in our stores. The corporate event days bring together like minded companies who have a shared interest in better meeting the needs of those individuals affected by severe allergies. In the fast moving environment of food manufacturing, production and sales, the Anaphylaxis Campaign are a useful resource in helping companies to keep abreast of up and coming issues, the latest research, new methodologies for detection of allergens and of course, the all-important consumer.
“
”
Moira Howie
Waitrose Nutrition Manager
Sharing the knowledge
Our AllergyWise online training courses contain advice on day-to-day management, reactions, medication and emergencies. For every one of the AllergyWise for Healthcare Professionals courses completed, the training is cascaded to approximately 45 people, meaning that over 25,000 people have benefited directly and many more indirectly from this course since its launch in 2010. In 2013 we developed a new AllergyWise course for pharmacists in conjunction with Boots, to be launched in 2014.
Our courses were endorsed
by the Royal College of
Nursing, Royal College of
GPs, the BSACI and
Pre-School Learning Alliance
Over 150 people took our
AllergyWise course for individuals and
carers
Over 50 GPs, practice nurses and surgery staff took our AllergyWise course for GPs
Over 700 healthcare professionals took our specialised AllergyWise course
In 2013...
Speaking out
It is our mission to represent the voice of the patient in research, lobbying and consultation, as well as in the media. Our direct contact with those affected by severe allergy is key, acting as a gateway to understanding what it is like to live with anaphylaxis and the unique challenges it presents.
Co-hosted a number
of All Party Group
meetings on the
future of NHS
allergy services
Helped launch a postcard
lobbying campaign
Highlighted the
continued unmet
need at a
Parliamentary
meeting of 120
patients & medics
Made our voice heard on the Children & Families Bill and the School Food Plan
In 2013...
As the UK’s only charity focusing exclusively on the most severe allergies, our fundraisers are exceptionally dedicated, enthusiastic and we cannot thank them enough. In 2013, we increased engagement even more, working hard to provide our supporters with new, exciting ways to get involved. As a result, we were delighted to raise a staggering amount through our community fundraising activities.
We sold over 1,500 packs of Christmas cards and our raffle raised almost £15,000
We raised over
£55, 000 through
community
fundraising
560 People took part
in our flagship fundraiser Orange Wig Day—almost
three times as
many as in 2012
Friends & supporters
In 2013...
As a peanut and nut allergy sufferer, I have been a member of the Anaphylaxis Campaign my whole life. They are a fantastic charity who support people with potentially life threatening allergies and their families. As a charity so close to my heart, I decided to have a look at whether you could run the London Marathon on their behalf and fundraise for them. From there, I spontaneously applied. I just hope that my efforts will result in more people becoming aware of the severity of living with an allergy and the truly fantastic support the Anaphylaxis Campaign offers.
“
”
Jess’s story
Spreading information and awareness is a huge part of our mission. In 2013 we stepped up our outreach strategy to ensure everyone has access to the best information on anaphylaxis. We did this through traditional media, but also through a focus on digital and social media. We hope this will not only increase awareness of anaphylaxis in the general population, but also reach more severely allergic young people, as they are a particularly at-risk group.
Reaching out
We received national coverage
including BBC news, The Daily
Mail, The Independent, The
Metro, The Daily Express,
The Guardian, The Daily
Telegraph
We had over 2,600 followers on Twitter
reaching around 12,500 people
We had almost 2,500
Facebook fans. Our most popular posts reached over 8,500 people
We saw hits to our website increase almost 4 times to 215,000
In 2013...
Funding our work
Incoming resources
£522, 299
£521,671
Resources expended
Looking forward
2014 is an important year for our charity, as we celebrate our 20th anniversary. This is very poignant as it also marks the anniversary of the death of Sarah Reading, the daughter of our Vice President, David Reading. He and the other founders wanted to provide support to the thousands of families affected by the condition, as we will continue to do in to 2014 and beyond. Our challenges this year include preparing for the new Food Information Regulations which will change the way our food is labelled and taking forward some high profile campaigns, reflecting our concern that everyone affected by severe allergies can live their lives as safely as possible, with access to the right level of medication, at the right time, with the confidence to use it. We cannot achieve these aims without the support of our friends, members, partners and associates. Thank you all for your very special contribution to our work and for your continued support.
“
”
Lynne Regent, Chief Executive Officer
A big thank you to...
Albert Hunt Trust | ALK-Abello UK Ltd | All our 2013 event speakers | All our local volunteers | All our Support Group leaders | All our Workshop leaders | All factsheets reviewers| All those who helped on campaigns in 2013 | American Peanut Council | Association of Project Managers | Boots | Dr Bill Frankland | Children's Foundation Limited | D M G Roper Charitable Trust | Debenhams plc | Dr Andrew Clark | Food and Drink Federation | Food Integrity Consulting | Foods Standards Agency | Giorgio Locatelli | Helen Kitley and friends | Help a Capital Child | Holchem Laboratories | IMED Systems Ltd | Impact Fluid Solutions UK Ltd | Instinctif | Jacqui Budd | Kelloggs | Kinnerton Confectionery | Lady Jardine Charitable Trust | Lloyds Community Fund | Mark Foster | Marks and Spencer plc | Marsh Christian Trust | Mead Johnson Nutrition | MEDA Pharmaceuticals | Miss Jean Alison Carr Deceased Settlement | Mr & Mrs Kessler | Mr & Mrs Ruggier | Mr & Mrs Stevens | Mr David Robertson | Mr Hugh Davies | Mr Miles Kendall | Mr Peter Wardell-Yerburgh | Mr Stephen Manning | Mr Wayne Weaver | Mrs Anne Woodward | Mrs Janice Crean | Mrs June Michelmore | Mrs Santosh Mehta | Neogen Europe Ltd | NSF International | NT Food Technical | Nutricia Advanced Medical Nutrition | Our Clinical and Scientific Panel | Professor John Warner OBE | Quorn Foods | R-Biopharm Rhone Ltd | Romer Labs UK Ltd | Sainsburys plc | Sanofi Patient Bursary Fund | Sir James Knott Trust | Sophie Jane Tyler Charitable Trust | Storrow Scott Charitable Trust | Sue Clarke | Tanfield Foods | The Ashworth Charitable Trust | The Barbara Ward Children's Foundation | The Cawte family | The Cruach Trust | The Gibbons Family Trust | The Hospital Saturday Fund | The Keesler Charitable Trust | The Milbourn Charitable Trust | The Oakdale Trust | The Percy Hedley 1990 Charitable Trust | The Robertson Trust | The Schwab family | The Staples Trust | The Thomas Family | The William Leech Charity | Unilever plc
Get in
touch
Our HQ 1 Alexandra Road
Farnborough Hampshire GU14 6BU
01252 546100
[email protected] Helpline 01252 542029
@Anaphylaxiscoms
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