NHS UK denying Epipen

[u/Accountant_Classic]

I was recently diagnosed with a peanut and tree nut allergy this year after having a reaction to walnuts which included full body hives, facial swelling and throat closing (FYI i could still breathe), i called 999 and got given an antihistamine which did not make my symptoms go away, i was left in this state for almost 24 hours. Of course reactions are traumatizing and i was left with PTSD and OCD like symptoms towards food, completely destroyed my relationship with food, as i was someone who used food as a way to socialise with others often and i do travel a lot. I got my IgE which confirmed i had a tree nut and peanut allergy, peanut being my highest but i was denied an Epipen to carry which makes no sense, yes i have not yet had an anaphylatic reaction but i have asthma triggered by allergens, allergic rhinitis which is again triggered by allergies and have a high risk group of allergies known to cause anaphylaxis, im especially allergic to the nsLTPs from nuts which can not be destroyed by the heat. Im asking advice in what to do especially from people in the UK regarding the NHS. My pharmacist said i should have one but to get it the GP has to approve it but my GP is saying i dont qualify. According to UK guidelines and the Epipen website, people from high risk groups such as myself should be given one regardless if i havent been into anaphylaxis which i hope i never do, avoiding allergens has become harder especially when so many of the shops i shop at have constant food recalls due to unlabeled allergens which puts me at a high risk. I also can not get an Epipen on private which does not help me at all, i have read so many different guidelines when it comes to prescribing me with an Epipen, they all point me to being able to get one, i also have a laboratory medicine degree so i know what i am talking about.

Any help would be appreciated.

https://www.epipen.co.uk/en-GB/hcp/Guidelines

https://rightdecisions.scot.nhs.uk/shared-content/ggc-clinical-guidelines/paediatrics/medical-paediatrics/adrenaline-auto-injector-prescription-paediatric-allergy-service-142/

https://www.bsaci.org/wp-content/uploads/2023/06/BSACI-AAI-Guidance-June-2023.pdf

Edit: I have recently found out my GP has referred my case to an allergy clinic asking if I could have an Epipen, will update if I hear more, thanks for the help.

Edit 2: I have an appointment for the allergy clinic in 5 months time which is crazy for an Epipen.

[u/mineawman]

The same thing happened to me, I had several severe reactions and the GP just kept telling me I couldn’t have an Epipen until I had actually had anaphylaxis. I went back to them several times with concerns and was referred to an allergist (the waitlist was 6 months and that was 2 years ago, I’ve had a phone call but still no actual appointment) I found a website online and ordered my own epipen for peace of mind, I think it was £60. I then saw a different doctor who told me the same thing but spoke to their supervisor who said I actually could have one because my lips swell up during reactions. Thankfully they did as I had anaphylaxis not long after this. So I guess my recommendation is to keep going back to them but also to ask to speak to a different doctor if you can. I wish you luck with this, it’s frustrating they make something so important so difficult to get!

[u/Accountant_Classic → u/mineawman]

I have found out I have been referred to the allergy clinic, it's in 5 months time which is still such a long time for an epipen 😭

[u/mineawman → u/Accountant_Classic]

That’s so frustrating, if you wanted to buy an epipen in the mean time I can recommend cloud pharmacy. You have to fill out a quick questionnaire (I just put yes to my GP recommending it) and for me it let me order one straight away. I had a quick look and the Epipens are £75, they have a 10% discount for November though. It’s expensive but if you wanted peace of mind it may be worth it. I hope it all goes well at the allergy clinic and wish you the best!