As the #epigate crisis hits American families, families in the UK find themselves battling their own issues when it comes to carrying a life-saving device. We are very grateful for our friend and colleague, Sarah Chapman, winner of the Allergy Hero UK award, for this article and her work to keep food allergy families safe.
This is the new and disturbing guidance that has been announced by the British Society for Allergy and Clinical Immunology (BSACI) at their annual meeting this September. Their proposal to change, for those qualifying as being at low risk of requiring a second auto injector, to only have prescriptions for one.
This directly contradicts all previous advice given to those at risk of anaphylaxis, and the Regulating Medicines and Medical Devices Agency (MHRA) still advise patients to carry two. The two main allergy charities in the UK, The Anaphylaxis Campaign and Allergy UK continue to recommend that we follow this guidance from them.
On examining the guidance from BSACI the qualifying statements have created a storm of controversy with the allergy community on social media.
This guidance for children of school age recommends that one auto injector for school and one for home with the following exceptions: obesity, far from medical help, or previously had a life threatening reaction or if previously required the use of two auto injectors.
The guidance for adults explains that the “carrying of adrenaline long term is not required if the trigger can be avoided, even if previous reactions were severe, for example oral prescription drugs, or when food can be avoided.”
In response to this new expert advice has not been received well by those on social media, and in response a new hashtag has now been started #carrytwo it is rapidly gaining in campaign style with many horrified parents and adults with allergy making their feelings known. Many are scathing of what they consider to be a blatant attempt to cut the NHS costs for auto injectors.
Patients in the UK face many difficulties in getting medical support for allergies and feel that it is ironic that the very people who wrote the Unmet need in 2005 (published from the Royal college of physicians explaining the poor care for the allergy community within the NHS) have also published this new carry one advice.
Fear has rapidly been felt at the idea that a reaction may not be halted with one auto injector, when faced with a long wait for medical support. There can be long delays during peak times for ambulances to arrive. Misuse of an autoinjector, fingers in the way or not holding to the thigh long enough for the epinephrine to enter the body, are anecdotally reported.
The very idea that food allergens are easily avoided is regarded as nonsense by many on social media, those who live with allergies have reactions despite continued attempts to avoid.
Many comment that the only reason they live the a normal life is because they have two auto injectors with them at all times. As a parent who has a now adult son with many allergies who had a near miss last year and needed both his jext pens to save his life, I feel that the only reason my son is alive is because of those two jext pens. His previous reactions only required one.
I urge everyone to globally support the #carrytwo campaign, and give personal examples when your auto injectors were needed. There is a dual benefit, support our wish to change this new guidance and firmly get #carrytwo embraced in everyone’s minds. It also will underscore as a reminder to everyone to carry their auto injectors! A plus for everyone! Remember #carrytwo and link #BSACI feel free to follow Sarah Chapman @sarahjchapman on twitter.
Link to the BSACI