The Anaphylaxis Campaign and its work – 2016
Michelle Berriedale Johnson takes a look at what the AC actually does over the course of a year.
Patient support groups, created by those who can find little help for their particular problem or situation, are nothing new. But, helped by the communications revolution and some dedicated campaigners, they have become a force in the land – and none more so than the Anaphylaxis Campaign. The campaign now has over 40 support groups across the UK.
The group was started over 20 years ago by journalist David Reading whose 17 year old daughter, Sarah, died as a result of an allergic reaction to eating a peanut. At that time, death from an anaphylactic reaction to a food was almost unheard of. But Sarah was one of the new generation of teenagers who had emerged from the peanut allergy epidemic which had broken out in the 1980s. (For interesting speculation on the possible causes of this epidemic see Heather Fraser's book here.) Now, 20+ years later, the incidence of serious food allergy, especially to peanut, has in creased to a horrifying one in a 70 children, while the campaign has become a major player in every aspect of serious food allergy not only in the UK but within the European forum.
Although their primary focus is still patient support, the Anaphylaxis Campaign sees raising awareness in the food industry, within the medical profession and within the wider public as a vital part of their work. Equally vital is their liaison and educational role both within the food industry and the medical profession.
It is assumed that because allergy is a 'medical condition' that 'medical people' will know about it - but this is far from the case. Compared to, for example, the thousands of heart specialists working in the NHS, the number of allergy specialists is pathetically small: not long ago there were only six allergy clinics covering the whole of the UK. Meanwhile knowledge of allergy at primary care level (your GP and practice staff) is woefully low.
The Anaphylaxis Campaign's clinical and scientific panel advises the charity on its work with clinicians. Membership of the panel includes the top specialists in this field. The charity also works with allergy clinics to facilitate research and have a large professional membership of doctors, nurses, school nurses, first aid trainers and others. For all of these they run excellent conferences. They have also developed an on-line training programme, AllergyWise, in three versions, for Patients and carers, Healthcare Professionals and GP and Practice Nurses, on how to handle and manage severe allergy.
Over and above all this, they are heavily involved in on-going Europe-wide research which, it is hoped, will lead to a 'more integrated approach to food allergens and allergy risk management'.
Their role within the food industry is no less vital. Not only do they provide allergy expertise to the food industry but they run a Corporate Membership scheme which brings together all sides of the food industry: manufacturers, retailers, caterers, research organisations and regulators. Again they run excellent conferences for these groups while using their contacts to enable a fast-reacting food recall alert scheme for their members over contamination and other packaging and labelling issues. The Anaphylaxis Campaign also has an active food industry panel, (not dissimilar to their Clinical and Scientific panel) where issues can be addressed and advice sought, again from experts across the food industry working in the field of allergy.
And awareness raising does not only take place within the food industry or among the medics. One of the great successes of 2015 was the launch of their hard hitting video #Take the Kit, illustrating all too graphically what can happen when seriously allergic young people do not carry their adrenaline shots. The film, which has been viewed allover the world, was aimed specifically at severely allergic teenagers, an alarmingly high number of whom (44% in a recent youth survey) do not carry their life saving Adrenaline Auto Injectors with them. But the film has done a brilliant job of raising awareness of the condition not only amongst allergic teenagers but over a much wider swathe of the population. It has, to date, reached well over 1 million viewers.
Another very successful awareness raising initiative is the annual #OrangeWigDay – this year happening on May 20th – when all supporters and 'interested parties' sport these rather alarming, but certainly eye catching orange wigs. This is the FoodsMatter team (including Boris the cat) doing their bit last year and I am sure we will be out on the streets again in 2016!
Other on-going campaigns also focus on adrenaline auto-injectors. The AC wants seriously allergic patients to be prescribed two pens, not just one (one may not be enough); they also want to see generic auto-injectors in schools and other public places. At the moment, the pens are prescribed on a patient need basis so there is no provisions for generic emergency pens – pens which might have saved the life of the girl in the #Takethe Kit video, for example.
And while all of these initiatives drive forward, the core 'business' of the campaign continues: fact sheets, knowledge-based articles on the website, an excellent new 'meet the doctor' scheme which hosts informal meetings around the UK with local allergy experts and, of course, their invaluable help line. Always there to give support, answer questions, suggest ways forward and, probably most important of all, to reassure allergy sufferers and parents of allergic children, that they are not alone.
The Anaphylaxis Campaign is still a very small team but under the guidance of Lynne Regent, their CEO since 2008 when she took over from David Reading, they pack a seriously big and incredibly valuable punch. If you are interested in allergy and want to know more about the campaign's work, check in to the website – or become a member – you can do so for as little at £19 per year! But that £19 will help fund an excellent group whose existence has made a huge difference to the viability of living safely with a serious food allergy.
For more information check in to the Anaphylaxis Campaign site here.
First published in January 2016
If you found this article interesting, you will find many more articles on anaphylaxis here, and reports of research into anaphylaxis here.