Food Allergy Risks, one autoinjector or two?

[eragon]

https://robynobrien.com/food-allergy-risks-one-autoinjector-two/

[spacecanada]

Good job, eragon! I hope they can change the guidelines.  I have needed two doses before (one was administered by paramedics in an ambulance) and never go anywhere without two (or more) auto injectors.  (I am neither obese nor far from medical help either...)

[RE]

That will be the U.S. if we get government health care.  It is not a coincidence that the recommendations of the British Society for Allergy and Clinical Immunology vary so much from the American Academy of Allergy Asthma and Immunology.  They have national health care and we don`t.....yet.  National Health Care is all about lowering cost at the expense of the patient`s best interest.

[spacecanada]

For comparison, Canada has government-ran health care and they recommend carrying two auto injectors.

[eragon]

/ironically the talk in the UK is that our health care will be more like US soon and that for us is a frightening thought!

[eragon]

my family has had a lot of nhs money spent on them! 
I dont think its about lowering the cost  at expense of patients interest. However such a system is always going to cost more and more money. The idea of cradle to grave care is pretty sound and has saved and does save lives, it comes at a price.

We have a rapidly growing population to cope with as well, I think that is having more of an impact on NHS, coupled with shortage of medical professionals to staff the hospitals.

I do worry that my grandchildren wont have access to national health service if its sold off in chunks  privately.

We currently live with the comfort of ringing for ambulance, getting a paramedic within 5-10 mins in a car first, and then  going to trauma care in local hospital.
Doctors there have contacted GP to push for referrals/ and sorted out referrals. 
We get sent home with free medication (not auto injectors sadly, but do get prescription) all without filling any forms or worry about insurance.

Even recently an example of care has been my husband who broke bone in hand and got big deep cut on leg.
Seen, x rayed, sewn up and sent home. With appointments for dressing change twice a week for 6 weeks with GP.
Excellent free care.

I think we take it all for granted in the UK,the future is going to be a cold hard shock if NHS changes dramatically.

[gvmom]

This is just a guideline though right?  From what is essentially akin to AAAI?  Or something like that? 

What I'm wondering is how actual doctors, in office, face to face with patients, actually take guidelines like that. 

When you get a prescription do you get refills allowed? 

As bad as the American healthcare system may be, our pediatrician, who we have a history with, writes the rx's for our kids.  With refills. 

So, lets say the guideline was 1 epipen, I have no doubt that our pediatrician wouldn't follow that guideline.  Or, we could just fill the rx, and then get another. 

I think the thing that I think about when it comes to some sort of published guideline by one sort of official medical group, is how a recognized advocacy group positions themselves in response.  Like if it was AAAI vs FARE.  Both recognized and viewed as expert, cited as sources. 

But, with NHS for you, how does your system work?  Do you see the same doctors, have a history with them, and have the ability to continue working with them being treated as an individual?  Is there some sort of advocacy group, like FARE, that could mount, or would mount, a campaign to essentially overturn the new guidelines?

BTW, when I read the materials, I do find it interesting how things are written.  As though epi-pens are given in some sterile office environment, given by a trained clinician.  It would be refreshing if there was some sort of true recognition that people using them don't do it on a regular basis, might be scared, shaking, panicking.... horrified because they are watching their kid turn purple.... or themselves.  Clearly nobody would ever accidentally inject their finger, or do it wrong for someone because they were shaking so bad watching their friend swell up or were unable to do it right because they were the ones having anaphylaxis.   

Too bad the people writing the guidelines don't have to experience anaphylaxis.... with one epi-pen.... and have to administer it alone to themselves .... before they tell anyone else how many auto-injectors they should have.   

 

[Macabre]

gvmom

[eragon]

  we have two main allergy charities who are questioning this, and there a  is petition. I have no idea what will happen with these guidelines as many are dont agree with them.

Allergy wise we have had the recommended care, referral from GP to pead allergy clinic and who then in turn to an adult clinic.
we have been under the care of one allergy clinic in a london hospital since our son was 18 months old and he is now 20. Has during that time been under the care of two consultants, (Lack and Warner) and seen many others in the practice.

We have seen the same GP for about 20yrs and only just changed because she retired! 



These new guidelines are completely confusing and difficult to see how their ideal version of practice will work out with many who dont get the gold standard of care.  I am hoping to get our concerns across, but the idea of your only injector not being given correctly or second one being needed is a horrific thought.
I know that this idea of one is based on individual case, but if its difficult to see an actual allergy doc, who is going to make that judgement?

[ajasfolks2]

eragon -- are the 2 main charities that are mounting challenge to this new "one only" rule showing their cards publicly?  Are you able to read all that they are citing so far as evidence and sound medical practice?  If so, are they citing US studies and orgs and accepted practice from this side of the pond?

[gvmom]

So a GP can't write a rx for an injector?  I ask that because I still don't understand. 

I guess I'm wondering if the guidelines actually mean anything in an applied way.  I mean, yes, I think it is horrific.  There shouldn't be something like that put out there like that.  I hope they decide to change their recommendations.

But for your son, say, if over the course of 20 years, a patient sees 2 consultants, or other in the same practice, and has the same GP in that time, then they would know his history.  I am assuming that they have been in agreement that having more than one injector was what should be for him.  Would they suddenly, because of something like that published guideline, just say one injector now?  Would they be forced to in any way? 

If people aren't able to see an actually allergist, don't they still have access to a GP?  Do GP's not care for allergy needs of patients if need be?

Again, our pediatrician has ordered RAST tests for our kids, writes prescriptions, and basically has done most everything we need, except skin testing and oral challenges.  Those two things we use an actual allergist for. 

Is there some sort of requirement that anything "allergy" HAS to be taken care of by an allergist specifically? 

I also am thinking that probably the way we, our family specific, use the services of doctors for allergies is probably different than others.  I think at this point, with 3 FA kids, I don't view them as expert.  We are.  They are able to write rx's and order tests.  I have absolutely no qualms in dismissing a doctor that would tell me 1 epipen would be fine.  They wouldn't be our doctor after that.  Of course, is that the problem with NHS?  Do you have many options to go elsewhere if you have a doctor you don't agree with?

[eragon]

ooh, lots of questions, yes we can change doctors and have right to get 2nd  opinion.
GP can write and do give prescriptions for auto injector. They can also refuse to prescribe, or possibly after this refuse requests for more than two or one at at time. And this is another huge concern. Gp lack real training unless they have sought it.

Allergy UK and anaphylaxis campaign here are working back ground to get this new guidance clarified.

my son will still keep his 2 auto injectors due to his history of severe reactions.


the new guides outline who would not get one with certain rules. suggesting that someone with a prawn allergy should only carry one for instance.
There are guidelines outlining that patients with allergy must be referred and in some areas that may be for instance a pead consultant in local hospital if they cant refer to allergy clinic,
or they get referred to a local hospital allergy clinic but its part time, and so the first wait for an appointment should only be between 8-10 weeks. because they are part time the wait time is this long, this is due to lack of allergy doctors and funding for full time clinics.
GP can do RAST tests, but really to get the best care you need to be under the care of a hospital allergy clinic.

[eragon]

http://www.allergyuk.org/blog/blog/post/268-update-from-bsaci-regarding-guideline-on-aprescribing-an-adrenaline-auto-injectora- 

from allergy uk

[name]

@gvmom

That's come to my attention as well.  The well-credentialed pediatric allergist whose experience is restricted to an office environment so highly controlled that artificial reconstruction of allergy risk (by adult medical professionals) is the stand-in for uncontrolled environments.  I wouldn't say they're choke artists in the real world but some get so caught up into the idea of 'mythbusting' they fail to become aware they are masters of a small subset of unilaterally self-controlled, and limited, experiences.  Or worse, begin to think they can practice law as well.

The few ped allergists who have LTFA themselves, or their own children with low thresholds inducing anaphylaxis, seem to be appropriately cautious.  Let's face it: this branch of medicine has been gridlocked for at least 20 years without significant advances.  However, there have been wildly significant shifts in beliefs or best practices based on correlative findings and meta analyses on a segment of whole population.

I think this will undergo an organic demographic shift as the first wave of formerly pediatric patients reach adulthood.  At that point the medical relationship will be uncoupled from 'helicopter parents' that must be managed when the now adult patients will advocate for themselves forcing the issue of their own personhood to be acknowledged by doctors. 

[gvmom]

Name..... I also look forward to the day when there is a huge group of our food allergic children that grow up and possibly become the new group of allergists and researchers.  Not only am I sick of people who don't live it determining the fate of our children, and thinking of deciding limitations on things like epi-pens for them, but my latest gripe today is the glut of new and "exciting research" that I find completely uninspiring, and thought up, again, by people who don't live it and are focused on getting kids in carefully filtered studies to eat a peanut.

I do think though, that it will be interesting to see how the growing adult FA population does advocate for themselves.  How the influence of us parents carries over as our children grow up.  Frankly, I am sure there are parents out there that think one injector is fine.  What will their kids believe as they get older?  That their parents were wrong, or that they've been just fine without two?

Has there been any sort of info collected, or interviews done, with a teenage group of FA kids?  I don't get the sense that anyone is talking to them.  Wonder what they think about one or two injectors..... if they are even remember to carry them consistently..... or would know how to use them?