Covid vaccine Update

[ALUK_Nurses]

Good morning everyone, I wanted to share with you all the latest we have about the covid vaccine priority grouping at this stage:

People with severe asthma who are Clinically Extremely Vulnerable (shielding) are in priority group 4 for the COVID-19 vaccine. This means you’ll get your vaccine at the same time as those aged 70-74.

We are aware of some confusion around who with asthma will be offered the COVID-19 vaccine in priority group six. We are actively working with the Deputy Chief Medical Officer’s office to resolve this confusion, and we hope to be able to share clear guidance about this next week.

We know a lot more about COVID19 than we did at the start of the pandemic. We now know that for most people with asthma their risk of dying from COVID19 is no greater than that of a person who doesn't have asthma at all. So now is a great time to make sure that your overall asthma control is good and that you know what to do if you get a flare up. For more info://asthma.org.uk/advice/manage...

There isn’t a set timescale for when all the priority groups will be vaccinated. The government has indicated that all people who are in group 4 and above will be vaccinated by the end of February. The advice is to wait until you’re invited. The good news is that the vaccination programme is moving very quickly, and almost everyone (adults) will get a vaccine at some point.

Our sister charity, the British Lung Foundation, has a COVID-19 vaccine FAQ which we will keep updated as soon as we get more information blf.org.uk/support-for-you/...

[Troilus]

Just to add to this: Letters for those in the CEV group are being sent out now. I received mine two days ago. This is the invitation to book at a mass vaccination centre. If you do not wish to, or cannot travel to your “local” mass vaccination centre, you do not need to do anything. Your GP hub will contact you.

[ALUK_Nurses Partner Administrator ALUK Asthma Nurse in reply to Troilus]

Thanks Troilus, good point to add. This is the link for booking (only, if you have received a letter): nhs.uk/conditions/coronavir...

[Bevvy in reply to Troilus]

If (as administrator says) you look on nhs website you can book from there. You should (I was) be given a choice of different places to go to get vaccine. I was able to choose, book for first and second inoculation.All the best.

[Troilus in reply to Troilus]

Just got an appointment at my GP hub for tomorrow, so if you are group 4 ( cev), not long to wait now.😁😁😁

[asthmaticprogrammer]

Thanks for the update, will be interesting to hear where they're going to place us priority-wise.

Can't say it isn't disappointing that we're potentially not all in group 6 if we're not CEV but have asthma. Appreciate AsthmaUK working to clarify this for us though.

[MELNEL]

That's good to know and great news.I got a call last month from my consultant who wanted to check up on my health. And we also had a chat regarding to the vaccine, and he told me that he is not sure if I can get the vaccine, that there is no ( weaker vaccine )for immunosuppressive patients jet. Will I still get vaccinated? Take care and stay safe and warm 🍀🍀🍀

[ALUK_Nurses Partner Administrator ALUK Asthma Nurse in reply to MELNEL]

Hi MELNEL, this is taken from our BLF vaccine Q&A page:

It’s safe for people who are immunosuppressed to get the vaccine, but it’s not clear yet how effective it will be for this group of people. So, if you’re immunosuppressed, it’s very important you continue to take steps to protect yourself from catching the virus, even after you’ve had the vaccine. It’s worth asking those you live with to do these as well. blf.org.uk/support-for-you/...

[MELNEL in reply to ALUK_Nurses]

Thanks for taking the time to response 😁 yes I am still on shielding and hardly leave the house anyway, only for some exercise. But is so cold ATM so don't want to risk to get an infection and do dancing through my house LOL. To keep fit a bit. Yes my partner is very careful with anything he is doing because he still working but he is not working with anyone else together. I will check the website. 🍀🍀🍀🌹🌹🌹

[MELNEL in reply to ALUK_Nurses]

I got my vaccine today 😃 all went well so far. Got /Astra Zeneca next one will be in May. So I hope I get on well with it. Enjoy your day ☺️

[Kitty2823]

Thank you. Appreciate all staff working towards this.. When will we know the update

[Dizzart]

Thank you for some real information at last as it seems neither the government doesn’t know anything !! It’s been a challenge for many of us to get any sensible info .🤔

[Moosarelli]

Hi Asthma UK.

You say in your post regarding the vaccine and PG 6 query for vaccine that "We now know that for most people with asthma their risk of dying from COVID19 is no greater than that of a person who doesn't have asthma at all."

Just wondering.... Could you expand on who "most people" refers to? Assuming it's not those with severe asthma, so does it include those on daily strong steroid inhalers, those on lesser steroid inhalers or maybe those that only need to use their ventolin every now and then? Would be grateful to have your views on this.

[Therunaround11 in reply to Moosarelli]

I've been reading the statement often that "asthmatics are fairing better than thought" which sounds really reassuring, yet my first thoughts are always the same: who are those asthmatics and what medication are they on? Will I really fair the same as someone on one puff of brown inhaler vs my Spiriva, high dose Symbicort, Montekulast and three courses of pred prescription throughout the year?

Secondly what is our hospital admission risk compare to non-asthmatics?

Because for me personally the fear hasn't always been about dying but rather surviving with devasting long term lung damage.

[EmmaF91 Community Ambassador in reply to Therunaround11]

The JCVI has defined group 6 asthmatics as;

“asthma that requires continuous or repeated use of systemic steroids or with previous exacerbations requiring hospital admission” (Page 9 assets.publishing.service.g... )

If you’ve needed 3 courses of pred this year, I’m assuming you’d come under group 6 so that may be worth checking up on.

However from people discussing it on here, there have been severe asthmatics (on MABs etc) who got through it at home never needing hospital. And I’m pretty sure that the JCVI was worked up the priority groups to cover hosp admissions as well as hosp deaths from covid.

Hope this helps

[Therunaround11 in reply to EmmaF91]

It does, many thanks.

[Kitty2823 in reply to EmmaF91]

I oam on fostair, montelukast and salbutamol. I asked my gp. He didn't say anything. Do I still get the vaccine

[Hidden in reply to EmmaF91]

That helps, thank you Emma. What is also interesting is that document goes on to say that list of those who are in Group 6 is not exhaustive.

[Hidden in reply to EmmaF91]

Though I will add that if by systemic steroids they mean oral steroids I’m curious to know what the difference is between those in group 4 and those in group 6, because the answer seems to be not a lot!

[twinkly29 in reply to Hidden]

Yep indeed!

[Hidden in reply to twinkly29]

Looking at the list of conditions that qualify for group 6, what comes to mind is that asthma, once again, is being pushed to the back of the queue: a medical condition that kills three people a day in the U.K. and results in a life threatening attack somewhere the U.K. every ten seconds. A condition which is known to be unpredictable, can become uncontrolled even in those who are usually the most well controlled is being ignored - yet again.

Either that or there has been a monumental mess up (I’m trying to be polite here, you understand).

[twinkly29 in reply to Hidden]

Yes I agree. It may be the flu jab eligibility criteria was an adopted one rather than official (it's difficult to know what's official these days!) If it was official then "expelling" one condition from it is weird. Hopefully AUK will get somewhere with the medical officers - there definitely needs to be more categories than CEV or not. Those controlled on salbutamol or even on a preventer or 2 are probably not the same ball park as those on more or with more issues but who aren't CEV. But of course "they" don't ever ask the likes of AUK for their expert knowledge. 🤦‍♀️

[Capybara21 in reply to twinkly29]

The official flu jab criteria are in another chapter of the JCVI Green Book. The equivalent line of the equivalent list says "inhaled or systemic steroids" in the flu chapter but only "systemic steroids" in the Covid chapter. Seems like a deliberate removal when they could have just copied and pasted the flu list.

[Hidden in reply to Capybara21]

But it makes no sense at all to have the same level of asthmatics in two different groups - which is what appears to have happened here.

[Moosarelli in reply to Hidden]

Oh yes... definitely understand!😂

[Moosarelli in reply to Hidden]

Exactly!

[ALUK_Nurses Partner Administrator ALUK Asthma Nurse in reply to Hidden]

Hi MaggieHP, there will be a lot of overlap, however there will be some people with a history of hospital admissions or regular courses of oral steroids who are not on the shielding list (those in group four) and so they will be picked up in group six instead. We are waiting for the government to provide us with more information to confirm the difference between the two sets of criteria.

We have just updated our website with where we are with things ATM

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

[Hidden in reply to ALUK_Nurses]

Thank you for that!:-).

The difficulty for people like me (normally well controlled but on a high dose of inhaled steroids to maintain it) is the impact of a second condition which is affecting the stability of the asthma. How do we fit in to all this?

[Claire_ALUK Partner ALUK Asthma Nurse in reply to Hidden]

I know this is frustrating and worrying for all, this is why we want the government to cast its net wide when making decisions about definitions to ensure that people with asthma who are at risk won’t be missed.

[Hidden in reply to Claire_ALUK]

Hank you Claire🙂.

[Wanttobehapppy in reply to Therunaround11]

Don’t know if this helps, I’m on durorespt 320/9 2puffs twice a day, braltus once at night, ventolin up to for times a day, been like that for ages as per gp/asthma nurse instructions, montelukast 10mg 1 at night, oral steroids/antibiotics was maybe 4/5 times last year, I’ve had the first vaccine 9th January, think this is why I’m cev group 4, I’m 41.Very uncontrolled

[Hidden]

I think the problem is that many asthmatics who are not rated as severe have additional underlying medical conditions which can aggravate their asthma. Silent reflux is a case in point. I’ve always considered myself to be a well controlled moderate asthmatic until November 2019 (so before covid hit) when silent reflux hit. To be fair I’d been struggling on and off with digestive issues for eleven years at the time and was under consultant led care for it, but this time the meds I was put on for the flare up didn’t knock it so I’ve had to remain on them. Despite that I’ve been struggling with silent reflux and the breathing issues that can result from it, ever since. There is no doubt that it’s having a knock on effect on my asthma. For approximately fifteen of the past eighteen months I’ve been on a maximum dose of my steroid inhalers (Flixotide 250). I’ve also found myself needing ventolin on top of that at times (normally extremely rare for me to need that). I’m not listed as severe (so didn’t qualify for group 4 - understandably) but there is no doubt that things are more unstable than they used to be.

[Moosarelli in reply to Hidden]

I know exactly what you mean about the silent reflux. I was prescribed omeprozole by my GP a year ago which I have to take on a daily basis.

[Hidden in reply to Moosarelli]

I can’t have PPIs, I get rebound from them so I’m on cimetidine and Gaviscon advance (both of which I now need daily) and I’ve been like it since the end of November 2019. That cocktail, combined with my asthma inhalers has made me susceptible to oesophageal thrush (though I never get oropharyngeal thrush). I’ve been referred to a respiratory consultant to see if I can be switched to Alvesco which should help with the thrush, but that’s currently on hold because of covid. So at the moment there’s a lot of juggling to try and manage the meds to reduce the risk of asthma attacks (not always successful, I had one last night), reflux (and associated breathing problems resulting from that) and oesophageal thrush!

[Dizzart in reply to Hidden]

PS me again as I found some tabs for reflux are useless where strangely Setlers suit me but my husband was advised by a brilliant old pharmacist some years ago to take a certain make , liquid in a bottle, sorry can’t remember name but he said the stuff his doctor had prescribed was the wrong ingredients 👍🏻👍🏻Good luck take care

[Hidden in reply to Dizzart]

The liquid versions do seem to be better than the tablets. I’m on the liquid version of Gaviscon advance (which is brilliant, as effective for breathing issues resulting from reflux as ventolin is for asthma) but I’ve been told to leave at least two hours between taking that and cimetidine. So at the moment I have cimetidine at 7.30/8.00am (along with taking my steroid inhaler) then at around 10.30 I’ll take gaviscon (5ml, just enough to stem any breathing issues resulting from reflux after breakfast). By lunchtime the breathing issues are usually starting up again, but eating lunch (my main meal) helps with that. About half an hour to an hour after I’ve finished lunch (so around 2.30/3.00) I’ll take more Gaviscon (10ml) to knock any issues arising from lunch. Supper is later than ideal (around 8pm) but there’s a reason for that which I’ll explain later (I used to have it no later than 6pm). Just before supper (which is light: soup, a slice of bread, a piece of fruit, water to drink and a hot milky water afterwards - my stomach won’t take tea or coffee or hot chocolate) I’ll have the second dose of cimetidine and that’s also when I take my steroid inhaler. That sees me through to bedtime when I take Gaviscon advance (15ml). Our bed currently has the head end raised 7inches.

So why the 8pm supper? This is where the complicating factor of oesophageal thrush comes in. The combination of meds I’m currently on (plus the occasional course of antibiotics) has made me susceptible to oesophageal thrush. Taking my asthma inhaler before I go to bed seems to increase the risk. Although I never get oral or pharyngeal thrush (so no issues with my rinsing out technique) some of the medication can lodge in the oesophagus where it can help to set up conditions making it easier for thrush to thrive. One of the ways to help with this is to eat not long after taking it (within half an hour). I can’t do that just before I go to bed because of reflux, so I have to take the Inhalers when I have my supper. As I said that used to be 6pm, but in winter my lungs can’t cope with 12hrs through the night. Supper at 9pm results in reflux during the night. 8pm is the latest I can do it to keep both the reflux and the asthma vaguely controlled - and it doesn’t always work.

Oh, and there’s one other factor that has to be weighed in, and results in yet another medication. I happen to have JHS, or joint hypermobility syndrome. In my version of it my bowel (and bladder) has been affected as well as the general joint hypermobility. Gaviscon Advance can increase the risk of constipation (not great in someone who has a history of that due to having a floppy and overlong bowel). A total of 30ml of Gaviscon a day has not gone down well with my bowel, so I now have to take 5ml of lactulose as well to keep things moving.

Sorry this is so long. My daily medication routine is a little complex at the moment😳.

[Dizzart in reply to Hidden]

I hadn’t realised till I joined health Unlocked how serious reflux could be but I am begging to learn a lot from you and others that my doctor would never get round to even finding out about me , but on the constipation the one thing that may help is I’ve discovered sugar free Worthers are a nice and also brilliant relief. You have to eat quite a lot but they work 😊

[Hidden in reply to Dizzart]

I’m on lactulose - which is pretty much pure sugar. It does the job:-).

[Dizzart in reply to Hidden]

Hi Maggie it’s funny you should mention reflux as I’ve had times when it’s really bad and times when it disappears, I have eaten packets of indigestion tables at times but I did start to wonder if as I’m fine now if it’s the other meds for high blood pressure etc. My meds keep changing according to what’s cheaper so I am suspecting this is the cause of reflux issues on and off . Hope you can find a cause and feel better 👍🏻

[Hidden]

Risk of dying is not the same as risk of adverse outcomes. From the research, it’s clear that asthma is definitely a risk factor for adverse outcomes and long covid. Why is the focus only on death? We need to be covered in group 6 if we haven’t met criteria for group 4/shielding. So many are close to that cut-off and are going to be left unprotected for months. We know the risk hasn’t disappeared just because we’ve been lucky enough not to need oral steroids as much as usual in a 12 month period.link.springer.com/epdf/10.1...

thelancet.com/journals/lanr...

statnews.com/2020/07/02/ast...

kcl.ac.uk/news/study-identi...

[Capybara21 in reply to Hidden]

Exactly, and I'd prefer an honest answer from AUK making it clear that the current JCVI phase 1 list has only considered mortality data but we should still do what we can to avoid infection for the sake of our long-term health- anything that could be taken as "relax, you'll be fine after all" (by asthmatics, or employers, or policy-makers...) seems irresponsible.

[Capybara21 in reply to Hidden]

The one thing that's actually reassured me in all this is to see PHE now warning against lifting all the restrictions when only phase 1 is complete: bbc.co.uk/news/av/uk-55878329

If AUK can't get us included in phase 1, their next step should be pushing for priority in phase 2 (which JCVI say could focus on reducing hospitalisations not just deaths); or failing that, at least raising awareness that there will still be people clinically vulnerable to worse Covid outcomes once phase 1 is done so we still need to (a) keep suppressing the virus until everyone has been offered the vaccine and (b) keep making allowances for clinically vulnerable workers because, no, phase 1 was not "all" at-risk groups!

I would find a commitment from AUK to speak up for our valid fears of long-term health consequences far more reassuring than them presenting the mortality figures being used by JCVI as "good news" when we already know that's not the whole story.

[Hidden in reply to Hidden]

Are they going by mortality rate or the risk of hospitalisation? Though if it’s the latter it’s remarkably short sighted of them given that any asthmatic can end up in hospital with an asthma attack even when there isn’t a pandemic. And of course, we all know that asthma can (often does) flare in response to a viral infection.

[ALUK_Nurses Partner Administrator ALUK Asthma Nurse in reply to Hidden]

Hi Artichokes, the research findings on this are very early but we are keeping a close eye on what is emerging. The governments priority for the current wave of vaccinations is preventing deaths, but we will make sure the government is aware of this evidence so it can consider it for future decisions about who is at risk from COVID-19. If you are struggling with symptoms after a COVID infection, you can get help here: post-covid.org.uk

We have just updated our vaccine page as well: asthma.org.uk/advice/trigge...

[Hidden in reply to ALUK_Nurses]

Thank you very much for your response.

[Emzcat41]

It’s absolutely gutting and I feel hugely let down (as I am sure so so many others)

[Hidden in reply to Emzcat41]

Abandoned and betrayed! I was already feeling that way as an outpatient for another medical condition I have in a different speciality to Resps (but one that can, and does, impact my lungs as well). I’m sure many outpatients feel the same way. But to have this on top, and most likely because someone high up just doesn’t have a sufficient level of understanding of the condition, beggars belief.

[Emzcat41 in reply to Hidden]

I’m totally with you - asthma uk need to be clearer on what they are doing to chase this and keep us updated. They are our advocates and I hope they stand up for us x

[Hidden in reply to Emzcat41]

We need a lot more clarity from AsthmaUK. “We are actively working with the Deputy Chief Medical Officer’s office to resolve this issue” tells us very little - least of all what the Deputy Chief Medical Officer’s office are doing about it (which could be nothing).

[KLNT]

I don't find this very reassuring. I know Asthma UK are doing their best and that this is out of their hands, however being told that moderate asthamtics are are no greater risk of dying from COVID than the population at large misses the point. How much risk are we at of more serious illness from COVID, how much more risk are we from Long COVID and how much more risk are we from serious Asthma exacerbations due to respiratory infections??

We have been told that we are at the very least CV, and let's remember that the boundary between CV and CEV is NOT clear cut, many with apparently the same level of asthma have been put into CEV whilst others haven't... equally the boundary between moderate and severe asthma is not clear cut and many of us are borderline.

The government say that moderate Asthma is CV, they say group 6 is for ALL CV, but then puts severe asthma which is already in group 4 in group 6 as well. Surely this is simply a mistake, because it is completely inconsistent. Could this simply be a mix up with the definition of severe asthma - after all did that not cause the mix up at the start of the March lockdown??

I would like to ask...if I am not put in a priority group, does that then mean I am no longer CV and can come off risk assessment at work, no longer need to wear the PPE that my risk assessment requires? After all - if I do need that then surely I should also be in a priority group!! This is not only very frustrating but is causing needless anxiety and it yet another thing that shows up the disparity with asthma treatment across the country, when people with the same level of asthma are being treated so differently.

[ALUK_Nurses Partner Administrator ALUK Asthma Nurse]

Sorry for the delay - we have just posted an update on what we currently have at this stage.

healthunlocked.com/asthmauk...

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