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Incorrect information on Asthma.org

dkw80 profile image
40 Replies

Asthma.org.uk advice is incorrect regarding shielding with selected inhalers. I take 2 puffs twice a day with Fostair 200/6 and have been told by my doctor and by a paramedic that i would not be considered someone who needs to be shielded. So now I am going to have to back to work and explain to my manager that the information I had was incorrect.

Unless nhs or your doctor tells you, please don’t assume like I did.

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dkw80
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40 Replies

I am doing what I have to and staying in as I am on fostair 100/6 please be careful when you are working

WindsweptRissa profile image
WindsweptRissa

Well AsthmaUK are going by the the information they have had from the department of health. Your doctor may have a different opinion based on what he knows about you, but remember just having asthma places you at a higher risk of more serious disease and therefore you should be stringently following the social distancing guidelines and whether you are safe at work depends on what you do and whether you are able to follow the social distancing guidelines whilst at work.

dkw80 profile image
dkw80 in reply to WindsweptRissa

Tell that to the customers the other day that were reaching over me as I’m putting stock out. There is no way in my store 2 metre distance can be achieved.

My work would pay me in full if I could get something official, but my doctor says a letter would take too much time and I should do my bit. I’m just getting over a chest infection, looks like I’ll be getting another one this year thanks to the nhs.

Tugun profile image
Tugun in reply to dkw80

Can you go to another doctor?

He says, "Do your bit." does he? Does he have asthma? Does he have people reaching over him? I know that doctors and health workers are in definite danger of getting the virus and some - of dying. They are courageous and heroes but that doesn't negate your illness and your right to be safe.

Sunny-clubman profile image
Sunny-clubman in reply to WindsweptRissa

I am on 4 puffs of fostair 100/6 .. I can take up to 8 if I need I work front line in the job centre ... I am currently at home .. I have had asthma attacks before but I manage it well ... hoping I’m right to be at home ?

TEDDYM profile image
TEDDYM in reply to Sunny-clubman

Yes you are right to be at home, as guidance from DWP is any member of staff who is in the vunrable category should not be in the office and should be social distancing. Stay safe xx

Sunny-clubman profile image
Sunny-clubman in reply to TEDDYM

Thank you stay safe

daleboy3 profile image
daleboy3

I can tell you clearly that people who have had Covid-19 state their lungs were at 20% whilst recovering from the virus & they did not have asthma & knowing how easy it is to get this virus I would put you in the at risk position, we know what it’s like to try & breathe normally when asthma strikes you periodically hard & without inhalers we would be lost, the paramedics don’t have asthma they know a lot about it but unless you’ve experienced first hand gasping for breath I feel you’ve been miss informed

in reply to daleboy3

I agree entirely with your remark about Paramedics knowledge with regards asthma. I once had to to call for an ambulance and the paramedic said I was not wheezing and did all her tests as usual an said that I was fine and did not need to take me to A&E and said that if I did not feel well they would take me to hospital.It was my call. I decided to go to A&E as I could not breath and after the medics did their tests it was not long before they found that I had a serious chest infection and duly admitted to hospital. They think if you do not wheeze you are not suffering from an exacerbation.

gazza50 profile image
gazza50 in reply to daleboy3

hi my names gary i am worried sick did you say people have recovered with asthma when they had cv19 ? im on vetolin seravent budsonide age 51

dkw80 profile image
dkw80 in reply to gazza50

Coved-19 is an upper respiratory infection. Most people, including asthmatics, will only experience this.

However if it moves to your lungs call for an ambulance, do not take no for an answer.

gazza50 profile image
gazza50 in reply to dkw80

thanks for reply what im asking is are there any cases of asthmatics recovering/ recoverd from cv19 ? or are we all doomed so worried thanks

in reply to gazza50

Yes asthmatics do recover, even those with severe, unstable asthma. See this post and stop panicking healthunlocked.com/asthmauk...

gazza50 profile image
gazza50 in reply to

THANK YOU SO MUCH I SUFFER WITH HEALTH ANXIETY THANKS FOR REPLY GREAT SITE GREAT PEOPLE X

in reply to gazza50

Oh, I’m sorry to hear that, horrible. I’m quite unwell but I manage not to worry about it too much, tho sometimes I get a fleeting panic, usually around 3am! My chest is a lot worse with all this stress we’re going through, so don’t worry if yours is too.

EmmaF91 profile image
EmmaF91Community Ambassador

Your GP/paramedic was probably going off of the description ‘severe asthma’ which is in and of a diagnosis in itself, rather than the med list. Because the government keeps saying severe asthma, medics will go with that label, when actually the gov means anyone who isn’t a mild asthmatic (that’s the chart of meds AUK are giving out from the department of health)

So the DoH is saying anyone moderate+ but the gov is calling that severe, and I’m guessing this is the confusion.

I hope this makes sense 😅

dkw80 profile image
dkw80 in reply to EmmaF91

Do you know where I can get this information. If I can get it to my manager that may be good enough, thanks.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to dkw80

If you print off/send the AUK covid page and have a prescription then they can read it for themselves

asthma.org.uk/advice/trigge...

WindsweptRissa profile image
WindsweptRissa in reply to dkw80

I agree with EmmaF91. The confusion with asthma was that government used the word severe asthma which is a clinical diagnosis which can only be made by a specialist, often after many investigations. But I think what they actually meant was people whose asthma isn't mild (easily controlled by a normal preventer and reliever inhaler) and will therefore more likely to be affected severely by this virus. Your doctor may have taken the severe asthma bit literally, and he/she is not necessarily an expert on asthma in relation to this virus, especially if he hasn’t seen the advice that has been given to AsthmaUK.

dkw80 profile image
dkw80 in reply to WindsweptRissa

That may be true but my company does not feel that information is official enough anymore.

It feels like this is being treated like a lottery, some are lucky and some are not.

Yellow75 profile image
Yellow75 in reply to dkw80

Perhaps see if you can have meeting with your manager and see if there is anything you maybe able to do to reduce contact with others. Not sure what sort of store you are in, what options are, but may help to think through. For instance could you change shift hours, do stacking/facing up early morning or night? May also need to go through with him why you are at high risk. If already done this is there anyone higher than your manager?

elanaoali profile image
elanaoali

I take exactly the same medication as you. I got the text and yes I am following the advice. I have 3 children and a husband so for me it's a no Brainer. I won't get paid anything for my job is supply Teaching assistant with agency.

Trusting God for my provision.

dkw80 profile image
dkw80 in reply to elanaoali

Glad you’ll be safe

MollyJ profile image
MollyJ in reply to elanaoali

If you were under contract for a defined period of time at a school ie until the summer or E.g. 5wks, you are still entitled to full pay according to the govt guidance and union rules. Unfortunately those not contracted currently are in a worse position, I think the unions are fighting for this at the moment.

clare86 profile image
clare86

Unless you get a letter and txt from the government, you are unfortunately not I. The high risk group.

Keep up with social distancing and wash your hands frequently.

Keep taking your inhalers.

My chest consultant said that there is something in the preventative inhalers that protect against the virus.

Stay safe and take care

Minime11 profile image
Minime11

Certain inhales are listed as the are high dose of steroid daily which in fact also can affect immune system so these are listed for a reason and severe should Be changed. It’s confusing alot of people including myself.

Julieanne76 profile image
Julieanne76

Hello. I have also been told that if your inhaler falls under a steriod inhaler, (i also use Fostair 200/6) that we have to self isolate for 12 weeks ...

Ari17 profile image
Ari17

It's currently a myriad of half-truths and vague answers coming from the government. I also think it's very dependent on your GP as as Windswept Rissa said its a clinical diagnosis. I have been told my some GPs I have severe and some I don't. I have generally been told severe asthma is only clinically official if you have been admitted to the ICU with it. I am on high dose inhalers and tablets and was recently been in A&E but have not received a letter.

If work are making you go in just make sure they know you are still at risk even if you are not officially considered "high" and need to be able to follow the social distancing measures. I am also working but trying my best to keep a safe distance/taking my inhalers more regularly. Asthma is no joke and many professionals with no experience of it forget that sometimes. Stay safe and I hope you get some answers soon.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Ari17

Severe asthma is diagnosed by a tertiary hospital. A ITU/ICU admission is not necessary. Severe asthma is usually diagnosed when someone is on max therapy, compliant with their meds and still get issues. This can be defined as 3+ steroid boosts a year, 3+ admissions a year or requiring maintenance steroids to get stability/control.

Case in point, I am a severe asthmatic however I have (so far) avoided itu (mainly because my first hosp was tiny and you needed intubation to get one of the 4 itu Beds...). I am in benralizumab infections, maintenance steroids (which I have almost managed to wean off of for the first time in 3 years 🎉) and antibiotics every week (among other asthma drugs). Before I started biological injections (which you can only get if you’re severe) I was in hosp at least once a fortnight with a severe to life threatening attack despite being on all the meds my GP and local con could offer.

Equally an ITU admission does not mean you have severe asthma (the diagnosis). It shows that you were uncontrolled and had a really severe attack. People undiagnosed with asthma (therefore on no drugs) may end up in itu, with an attack leading to their asthma diagnosis but then be completely controlled by inhalers.

Any asthmatic can have a severe attack, but not every severe attack is in a severe asthmatic.

Right now I think the government are using the phrase severe asthma, but the dept of health (where auk gets its info) actually mean moderate+ asthma. Then medics are getting confused.

Hope this explains the diagnosis process a bit better for severe asthma, for anyone interested... and explains why there is such confusion atm 😅

targ2002 profile image
targ2002 in reply to EmmaF91

Before any diagnosis of severe asthma, you also have to have a series of co-morbidities investigated and either ruled out or managed and still having issues before getting a diagnosis of severe asthma.

I have unfortunately started this process at the beginning of the week, unfortunately, I had to have a phone call rather than going to the hospital to talk with my consultant, so I had none of the tests I was supposed to have :(

That was Monday and he didn't have any of specifics but told me to be careful and if I receive the letter which I have, to keep myself safe.

I am being careful and distancing but am an informal carer for a vulnerable person.

Neither of us have had letter yet.

I work from home anyway, only go out to see him, do shopping and one walk a day with dog. All other interactions on line.

Based on Asthma UK I am expecting letter as am on the Duoresp Spiramax 2 puffs twice a day plus extra if required. Monteleukast, Ventolin and also have a Cpap machine.

I am also on a variety of other medication re blood pressure and Hayfever ie fluticasone fuorate nasal spray.

Until I get letter still doing what need to do being careful but the anxiety is will I get the letter or not.

Been trying to sort care for person I look after who has COPD/diabetes/heart condition who is wheelchair/housebound anyway. On top of that he has severe mental health problems which cn result in behavioural issues.

If I get letter and have to self isolate (I will still be in touch via phone /WhatsApp etc) and he has access to all his medication there is a high risk of suicide, if he doesn't see anybody for 2/3 days face to face.

Currently his meds get put in locked safe and I take a day out at a time for him.

I know it can take a while to get letter but it's the uncertainty at the moment. Preparing for it but not sure one way or other.

Well at moment and Peak flow OK but Hayfever hitting as well now!!!

Eye drops had been taken off my repeats had to ask for them to put back on as eyes itchy as hell (conjunctival Hayfever started after council cut grass last week) and at this time when told not to touch face and eyes its difficult not too.

Sorry rambling.

Yellow75 profile image
Yellow75

I too am on drugs listed by asthma UK. I think what failed to convey in Sunday information was also that frequency and severity of attacks would be considered to. I'm occasionally, usually follows a virus and attack severity is bad side of moderate. The worst part of my attacks is that it takes me a long time and strong meds to come out. I'm on strong steroids and montelukast to prevent me getting into an attack. My doctor said I am at higher risk, but not highest. Her advice to me was to keep contact with others to minium. We also talked through how to manage asthma symptoms I might have.

Albertdog profile image
Albertdog

Join the club - I was on Fostair for quite a while - however, about 6 months ago was changed to tiotropium - which is also on the list you refer to.

As yet I have not been given any advice - despite being in my 83rd year.

I suppose I must hibernate and hope for the best....😇🙏

dkw80 profile image
dkw80

Hi everyone, I just wanted to update everyone on what I’ve found out today.

I emailed asthma.org.uk and got a reply this afternoon. They explained how they gathered the information, the Department of Health and Social Care and their own clinical leads. However they did say “It is to be used as a guideline only and we will update it if anything changes.” My work unfortunately requires that I have a letter from the NHS or the Government, however your work may be different.

I’ve talked to my manager today and we both agree that I would not easily be able to keep 2 metres distance from people at my job. In fact he was surprised I am having so much trouble with this and will do everything he can to help me, even if I have to wait outside when there is to many customers inside :)

Please everyone follow the advice from asthma.org.uk/gov/NHS. Stay as safe as you possibly can.

Thank you

Wheezycat profile image
Wheezycat

dkw80, you stayed on my mind all day yesterday. I don’t think what I am going to say will help you, unfortunately, but just some thoughts.

You clearly don’t have a supportive GP. I get the impression you work in a supermarket? If I am right then I want to thank people like you and your colleagues. But it does not sound as if your employer is doing all they can to help you, or any other employee stay safe! Hard, I realise, but they should ensure that people stay the right distance from you. And they should not dismiss your worries, nor guidelines!!! I feel quite appalled about you having to work with those conditions around you. I really hope you and your colleagues will stay safe and healthy.

PS Have you considered sharing this with your MP? Ours talked about situations like this on local news yesterday. She was very concerned.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Wheezycat

Just to add on the MP point: Rachel Reeves MP is collecting information about workplaces which aren't following the guidance and protecting workers. Perhaps worth contacting her? The email is here: mobile.twitter.com/rachelre...

Wheezycat profile image
Wheezycat in reply to Lysistrata

Yes, ours is another one, Rachael Maskell.

Wheezycat profile image
Wheezycat in reply to Wheezycat

This is what she has said on Twitter: “Message to all employers: Many of you know that your staff do not have PPE or are not fully social distancing. If you are not providing essential, life-critical services - stop putting workers lives at risk - send them home and get the financial support provided to do this.”

dkw80 profile image
dkw80 in reply to Wheezycat

This letter was posted on the forum regarding the situation,

england.nhs.uk/coronavirus/...

Unfortunately this explains a lot. There is a vast difference in care regarding asthma at my doctors. Thankfully my GP has a history of reversing the crap decisions so the plan is to try and contact him.

If anyone else is having trouble, try contacting a doctor or nurse who knows your history. Remember it’s not that we are ill at the moment, it’s to stop us from getting ill and using up a hospital bed.

elanaoali profile image
elanaoali

I agree keeping ourselves are safe as possible is the key.

I was sheilding until asthma UK posted this on their website.

I don't fall into the criteria as I only have two of the 3.

Yes taking Fostair nexthaler 200/6 2 puffs twice a day and monkelaust but no the rest.

However I haven't gone out since last Wednesday and my family are taking the bare minimum of shopping trips 2 a week. Constant cleaning of our light switches etc.

I am taking one day at a time with gardening, cooking and crafting taking up my time plus husband and my girls.

If you or your child is in one of these groups, you should have already been identified and sent a letter or text message advising you to shield:

You are taking ALL THREE OF:

a steroid preventer inhaler (at any dose)

another preventer medicine (e.g. you are on a combination inhaler, or take a medicine such as formoterol or salmeterol, or tiotropium as well as your steroid inhaler, or if you are taking montelukast)

regular or continuous oral steroids (which means you had 4 or more prescriptions for prednisolone between July and December 2019)

Or you have been admitted to hospital in the last 12 months for your asthma

Or you have ever been admitted to an intensive care unit for your asthma.

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