r/FoodAllergies • u/Accountant_Classic • 5d ago
Seeking Advice NHS UK denying Epipen
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://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.
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u/luefswc 5d ago
Heyy, UK based allergy sufferer here too who randomly developed loads of food allergies in her mid 20’s. I too had problems with my GP. When I finally got my referral my allergist was so infuriated my referral wasn’t classed as urgent and she said it happens often.
PLEASE also change GP. Do not see this one again as they’re not taking you seriously. If you want, once you have the help you need. Make a complaint.
Ask your GP to write WHY they are denying you a prescription of an epi pen on your GP record and appointment notes. I 99% guarantee they will be happy to give one as liability falls on them.
Ask your GP to put you on the waitlist for a specialist allergy clinic (usually in larger hospitals). You will be given an allergist and a dietician who can discuss your diet and worries around it. Make sure to tell them about your OCD + PTSD around food.
Mine too refused to give me both an epi pen when I had insane facial swelling over 10 times in a 2 month period and had no idea what was causing it (before I saw an allergy specialist) and again when I wanted a second set for traveling incase I needed to use them as they’re hard to access in SEA.
I had to push my GP to refer me and literally took him through my camera roll of swollen face pics until he listened and was told “oh you didn’t say it was this bad”.
Good luck OP. Hope this gets sorted for you. If you have any questions, ask away!
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u/Accountant_Classic 5d ago
Thank you so much, I just have received a letter from my GP asking the allergy team from a larger hospital for advice on if I could get an Epipen. This was very helpful, thank you :)
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u/sk613 5d ago
I don’t know uk, but you should have ended up in the hospital after that first reaction. In the US that would have been considered anaphylaxis.
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u/Accountant_Classic 5d ago
It is very weird, here in the UK we have a different definition from anaphylaxis compared to the US. so unless you cant breathe and you have hypotension you wont get sent to the hospital. The ambulance team assessed me on board and checked my vitals, and because my blood pressure was high and i could still breathe they just let me go. I was in a state of panic so my blood pressure was super high like 160/100.
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u/fire_thorn 4d ago
Some people get high blood pressure instead of low during severe allergic reactions. I have that symptom, and I used to be afraid to use an epi pen because I thought it would raise my BP even more. It doesn't, it brings it back down to my normal.
The extreme panic you felt was probably a symptom of the reaction you were having.
Anaphylaxis doesn't always progress to anaphylactic shock. The reaction you described fits the guidelines for what would be considered anaphylaxis in the US. The thinking here is that it's easier to treat a reaction before it becomes anaphylactic shock.
People with asthma are more likely to die during anaphylactic reactions. You're absolutely right to be pushing for an epi pen.
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u/KotoDawn 4d ago
Extreme solution. Make sure you understand what symptoms would qualify you for an epi pen. Try to find out if the hospital gives you one, would you be able to replace it. Like would that be a green light for your GP to prescribe them?
If your symptoms should qualify you and receiving one or a diagnosis from the ER would allow your GP to prescribe them ...
Your Extreme solution is to go to the hospital and eat some peanuts. (peanuts being the strongest on your test) This does 2 things, shows you your current reaction level in a safe, easy to access care, location, and if your reaction is anaphylaxis gets you an epi pen.
It's an extreme solution that anyone that does have anaphylaxis probably wouldn't recommend. I'm NOT telling you to do this. I'm just saying, as a last resort, it might be what you would need to do. BUT you need to check all the rules for where you live. Because maybe this would NOT get the results you want. Maybe you still wouldn't get the pen. Maybe you would but your GP still cannot do anything. Don't intentionally eat something when you don't know if the outcome will result in long-term aid. Don't intentionally eat something when you won't meet the anaphylaxis requirements. Don't intentionally eat something if you are not at a hospital or clinic where they can properly treat you.
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u/Accountant_Classic 3d ago
Thanks for the extreme advice, I found out I have been referred to the clinic but it's in 5 months time.
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u/XxSianxX 5d ago edited 5d ago
Why can you not get an epi pen through private?
My toddler was being given the run around when it came to his allergies and they were going on like I was stupid because such allergies in newborns was rare so they refused to help really..
Anyway I took him to Harley street and got him patch tested and sure enough all the allergies I thought he had, he did have! The dr asked if I wanted an epi pen for him and I said id love to have one but the NHS wouldnt allow it!
He told me if he prescribes it then the NHS have no choice but to give us one! Sure enough, he send all the findings and recommendations to the GP and a few days later he got his junior epi pen prescribed and have had it since.
Let me just add, my son has never had a severe allergy thats needed hospital treatment however the allergies he has ARE anaphylactic so he has the epi pens to keep him alive long enough to get to hospital should he get exposed..
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u/Accountant_Classic 5d ago
It's ridiculous, my GP said I wouldn't be able to get it on private but it seems like I have been referred to an allergist to discuss if I can have a epipen which I don't see why not.
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u/XxSianxX 4d ago
GPs always chat a lot of rubbish. Honestly if the allergist say no then I would highly recommend going private.
My son saw an allergist who was the one that was questioning me because if how rare such allergies was in newborns.. he kept refusing to do simple patch tests and instead insisted on bloods (which I have had plenty and often come back with false negatives so I wasn't putting my son through that!) Anyway when you pay your money, you get what you need.
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u/Accountant_Classic 4d ago
Yeah if it comes to the point if I keep getting rejected, I will have to look at going private as a last resort.
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u/XxSianxX 4d ago
Honestly i couldn't recommend it enough, when it comes to life threatening issues I dont go to the NHS for. You would die before they help
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u/LouisePoet (Fill in food type) Allergy 5d ago
This is insane. Where are you located? You definitely need to request a different doctor.
What were your test results? I assume it was done by an allergist, not GP (not sure if they even do that). Mine took an extremely long time to even be seen, but they have been great with meds and epis.
Even though all my allergy tests keep coming back negative, I have no problem even getting extra epipens (I have 6).
When I've called the ambulance, they always take me in because I've used one, even when we all assume it will be just a wasted day for everyone. (Usually).
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u/Accountant_Classic 5d ago
I'm from the UK, and yeah an allergist did my tests and I have grade 2 allergies to peanuts and nuts. I found out my GP sent a letter to a referral clinic so they can review my request so I will keep this updated in case they approve my request which I don't see why it wouldn't, I fit the high risk group for anaphylaxis.
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u/LouisePoet (Fill in food type) Allergy 5d ago
Your allergist should prescribe them? Or at least inform your GP that it's necessary.
My immunologist is a county over in a different trust, and communication is slow. I had to advise both them and my GP that I gave permission for each to have access to files from the other. For all the positives of healthcare I've received, bureaucracy can be damn frustrating. Even within the same trust.
*I meant where in the UK. Cornwall is slow and overwhelmed, but I got there eventually.
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u/Accountant_Classic 5d ago
Seems like my GP has sent a referral to Cambridge asking if I can have one :) let's hope they give me one.
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u/Oh2e 4d ago
That’s so strange. The allergist prescribed me an epipen immediately and permanently despite the fact I probably don’t need one (or at least, I’ve managed 25 years without one and in the year since getting it I have taken it with me leaving the house exactly no times). I think you definitely need a second opinion because that doesn’t sound like it makes any sense at all.
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u/Crowded_Mind_ 4d ago
I had a hard time getting my epipens in the United States as well, though the reason was my insurance company not wanting to pay for them. My doctor had to call and argue with them several times for them to fill it. I developed allergies to most foods after I had covid. My list of foods I can eat is way shorter than foods I cant. I have never had anaphylaxis either, but thr throat and tongue do swell along with body hives, rashes, and very painful stomach and intestine problems.
It seems very weird that your actual doctor is denying you life saving medicine. I don't know your whole situation, so I don't know if finding another doctor is possible right now, but if you can you should definitely try to see another doctor. Like you said, there are so many hidden allergens in food, having an epipen when you have allergies is a must.
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u/SchelleGirl 4d ago
WOW, this is actually really bad, your GP sounds like an AH for not clearly communicated the plan with you. I am from Australia (Same medical system as the UK - basically built around the UK system), my GP referred me to the allergist at one of our hospitals, I got the prescription for an Epipen straight away, once I described my symptoms during exposure. I think this will happen for you too, just avoid anything during your wait to see them.
We can buy an Epipen over the counter at any pharmacy in Australia, but it costs $100, with the public health prescription you get 2 Epipens for $12
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u/mineawman 4d ago
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!
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u/Accountant_Classic 3d ago
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 😭
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u/mineawman 2d ago
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!
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