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I’ve just received an nhs emergency identity card through the mail that states that I’m steroid dependent

DarcyMay profile image
22 Replies

This has not been discussed with me and I’m quite shocked to realise this (perhaps I’m being naive and it should have been obvious with the amount of inhalers I’m on …..sirdupla, spiriva respimat and regular courses of prednisolone I have.) it states on the card I’m at risk of adrenal crisis. None of this has been explained to me. I’m under the care of the consultant at the hospital for my asthma and he did say it was important that I don’t miss any of my medication but I took that to mean that it was to prevent my asthma flaring up not that I was steroid dependent. Can anyone shed any light? Thanks

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DarcyMay profile image
DarcyMay
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floating_ profile image
floating_

I was given this card too, my GP told me not to worry about it, but I haven't actually asked my consultant about it? Will follow this thread, would like to know as well!

twinkly29 profile image
twinkly29

If you put "steroid card" into the search on this page you'll find loads of previous responses. Basically though, don't think anymore about it, it doesn't change anything for you, just serves to highlight that you're on steroids if emergency care people need to know.

EmmaF91 profile image
EmmaF91Community Ambassador

STEROID CARDS

To combat the risk of accidental steroid withdrawal, or adrenal crisis, those on moderate to high dose steroid inhalers, tho it’s been suggested that anyone on an inhaled steroid should have them.

Those on steroid weans/on/off steroids a lot/maintenance steroids are normally advised to carry a steroid card. Traditionally these have been a blue card that you could just get from your local pharmacy, but NHS England (and maybe everywhere in the UK 😅) are now moving to sending red steroid cards in the post. This is because a lot of people who should carry them are unaware that they even exist 😅. They are only really used if you turn up to hospital unconscious and thus unable to tell them what drugs you take.

Being sent this card DOES NOT mean you have adrenal insufficient (AI) it just says you have steroids in your medication so the medics know to watch out for those issues. And the phrase steroid dependent doesn’t actually mean you are… just that you might be, in a way that if you stop your lungs AND your adrenals may become unhappy. But other than the regular pred courses (a bigger issues if too frequent) the only steroid it sounds like you’re on is sirdupla.

For more about steroids etc (and to see where this was C&P from 😅); healthunlocked.com/asthmauk...

And for more about AI; healthunlocked.com/asthmauk...

Hope this helps

Bevvy profile image
Bevvy

As others have said this is NOTHING to worry about. Is purely in case you had an accident and were unable to inform medics what medications you are on.I think it is dreadful that these cards are being sent out with no information/reassurance so naturally people panic when receiving them.

twinkly29 profile image
twinkly29 in reply toBevvy

My most recent discharge letter from hospital had "It has been confirmed that this patient has a steroid card" in bold at the beginning of the (otherwise incomplete and, in places, incorrect) burble. Of course me having a steroid card is clearly the most important thing on there....given it goes to my GP who issued the card 🤦‍♀️.

Bevvy profile image
Bevvy in reply totwinkly29

Following posts here I had to ask gp surgery if I needed card. Which I did. If I had waited for them to contact me I would be waiting forever. They are becoming more and more useless 😢

twinkly29 profile image
twinkly29 in reply toBevvy

I honestly think it's a box ticking thing so it can be said that they've considered it (they being whoever decided we should have them), given how disorganised and inconsistent the general giving out has been. My GP surgery is brilliant but not all are. And I'm not sure hospitals would necessarily think to check really. Who knows though!

Pipsqueak77 profile image
Pipsqueak77 in reply toBevvy

Yes... totally agree with you Bevvy..I have only ever been issued one of the old style blue cards on discharge from the hospital with months of weaning pred. I’m pretty sure my GPS don’t even know they exist and care even less.. so I think it’s good that at least some asthmatics are being issued these cards.

As usual it’s the postcode lottery of asthma treatment!!😩😝

DarcyMay profile image
DarcyMay

Hi everyone thanks for all your advice and reassurance. It is a bit alarming to receive one of these cards with no prior warning because of the wording. Mine says that I’m physically dependent on daily steroids as a critical medicine. I also wondered if they knew something I didn’t know in terms of a dependency. But obviously it’s just the wording.

I’m on courses of prednisolone very regularly (approx once a month) which I realise is not at all ideal but sometimes nothing else will help.

For context I have a severe and uncontrolled asthma diagnosis and have regular nebulisers at home and was required to shield during pandemic.

Now that I know what it’s intended use is for I.e for information for a+e staff or paramedics if they find you unconscious I actually think it’s a good idea but this just landed on my mat yesterday with no discussion from my gp or consultant and to a lay person it’s a bit alarming to see that when you don’t understand. Sorry if this has been done before or it’s obvious for a lot of people. It genuinely wasn’t for me

Thanks again from r all your replies

X

twinkly29 profile image
twinkly29 in reply toDarcyMay

I think it's very common (from what I've seen on here) for many GPs/nurses to assume people know things about asthma care, meds, monitoring and so on when it's not always obvious - actually it's often not obvious! It probably happens with other conditions too. So this probably fits nicely with that lack of explanation. That doesn't help you of course but you're not alone.

Js706 profile image
Js706 in reply toDarcyMay

I know, it really hasn’t been handled very well!

I think it’s a really good idea that more people carry them (as a just in case measure) but the way they’ve gone about it is just stupid. I was on a patient panel for some research and the lead consultant (who also happens to be my regular consultant 😂) asked if I’d had one and my opinions on it... I can’t say I was overly kind. Just sending them out with no info at all has just lead to confusion and unnecessary stress for loads of people! It needs a nice, simple letter explaining things with it (I’m assuming it didn’t come with anything like that?)

It also seems to be pretty chaotic about who is getting them and when - I’ve been on prednisolone for 3.5 years continuously but still haven’t actually received one of the new red cards 🙄

twinkly29 profile image
twinkly29 in reply toJs706

A letter that uses patient friendly words not phrases that scare people!

Bevvy profile image
Bevvy in reply toJs706

Ask for a card if not received one yet. No need to wait. My surgery pharmacy just phoned the chemist and asked them to give me a card. Chemist may well not even need phone call but will just issue you with one.I have always been able to get blue card at my request at chemists.

Js706 profile image
Js706 in reply toBevvy

Thankfully I do have a card as I saw them at my practice and asked for one. But just not had anything through the official rollout yet

Bevvy profile image
Bevvy in reply toJs706

Well IF any joined up thinking you may well not receive become already got one…. This year I had flu jab at chemist because felt safer than gp “cattle market”. Was impressed when he said would let gp surgery know that already received it.

hilary39 profile image
hilary39

Just to be on the safe side to be sure you don’t have AI I’d ask your doctor to test your cortisol. That could help set your mind at ease. I developed AI from too many courses of prednisone and no one ever mentioned that was possible to me! It’s crazy how the communication gap persists and in this case I’m sure it was alarming to get that card out of the blue

Dino40 profile image
Dino40

I haven't seen one of those blue cards for many years. I'm on a tapering dose of steriods and they haven't advised carrying one at all.

Not sure if NHS Scotland are doing red cards 🤔

Bevvy profile image
Bevvy in reply toDino40

Speak to chemist about blue card. That’s where I get mine from. I always make a note on card when taking oral steroids, amount and how long for. Whilst asking you can ask about red cards to find out if same system as England.

Oh that’s odd - I wonder if we all get them eventually?!

Dino40 profile image
Dino40

I spoke to my pharmacist and it would appear the blue cards aren't available anymore in Scotland.

HungryHufflepuff profile image
HungryHufflepuff in reply toDino40

I don't think either of the steroid cards exist in Scotland. 🤷

I was given one recently and raised my eyebrows when I got it. My asthma is moderate and whilst I’ve been on steroid inhalers for thirty odd years I wouldn’t have thought that qualified me for the possibility of being steroid dependent (I’ve been on oral steroids - a short course - just once). I rang the in house dispensary at my local surgery (who issued it) and queried it to be told that it was now required practice.

I agree with Js706. A little information/warning about it would have been helpful. As it was I wondered if a mistake had been made.

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