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Asthma UK's update on "no longer needing to shield" texts

twinkly29 profile image
18 Replies

Copied from Asthma UK's Facebook page:

"We’ve been urgently trying to find out more information about the text messages many people with severe asthma received out of the blue, telling them they would no longer have access to shielding support.

We now understand that these texts are legitimate, and not spam or sent in error as some people thought. We have been told that everyone who got one of these texts has been removed from the shielding list and has been taken off personally either by a hospital or a GP. This would mean that if GPs don't know about it, a hospital consultant could have done the removal.

The texts were telling people that the shielding support they had registered for, such as food parcels, would stop. Unfortunately, for many people this text was the first they heard about being taken off the shielding list. There should have been communication from a GP or hospital first, and something has clearly gone wrong in the sequencing of these conversations and automated texts.

We don’t know the exact numbers of people with severe asthma who have been removed from shielding, but we believe this has happened in England only. We have asked the NHS for the logic behind these decisions to remove some people from the list, but we have not had an answer yet.

If you’ve not had one of these texts, which should be the vast majority of people with severe asthma who are shielding, then you should continue to follow the stay-at-home guidance until the end of June. We know the government have suggested it is likely that shielding will continue beyond this date - we will share an update when information is released on this.

If you have received one of these texts, we’d encourage you to speak to you GP or hospital clinician. If this is likely to cause problems getting help, there are a few sources of support you can contact:

⚫The NHS Volunteer Responders scheme is now open to self-referrals and may be able to assist with shopping and prescription collections 👉 volunteering.royalvoluntary...

⚫Your local council or the mutual aid network can also offer assistance 👉 covidmutualaid.org/local-gr...

⚫If this may cause employment issues, we’d suggest approaching your employer directly to discuss your needs. This ACAS advice for employees who want to shield/work from home may be useful 👉 acas.org.uk/coronavirus/vul...

We’ll continue to seek information on this issue and push for the right people to be contacted and supported during shielding."

facebook.com/40952091012/po...

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twinkly29 profile image
twinkly29
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18 Replies

what an absolute s********

the nhs is meant to treat patients with dignity and respect. and you don't do that by texting someone with private and important medical info like that.

they should be sending out a letter with full guidance on what you should and shouldn't do now that you're out of shielding. not just a text saying "get back out there"

I would be complaining to nhs england for what is inexcusable treatment

england.nhs.uk/contact-us/c...

Troilus profile image
Troilus

Thanks for posting this, twinky

gillbee profile image
gillbee

It’s still a mess, it’s still ruined my career, My finances & still lost in the cracks of grey land. This just shows the big loop holes and inconsistencies in this scheme!!!!

Birthday60 profile image
Birthday60

It sounds as if some people were included In the shielding group in error and further analysis of their medication and severity, risk has meant they are not required to shield. There are many who claim to be asthmatic but in reality simply need to get fit, lose weight, and start be active. My husband has teenagers in his school who are labelled asthmatic to get out of games , never have an inhaler on them and enjoy the privileges of being special.

Nutzs47 profile image
Nutzs47 in reply to Birthday60

I don’t think the NHS sent letters out to people who claim to be asthmatic as most of the letters were sent to asthmatics who were under secondary care or who had been admitted to hospital with it not just anybody who’s dr had given them a reliever just in case ,which does seem to be happening esp if a person has a lot of chest infections over a short time ,I know this as 2 of my grandchildren have them as they’re prone to respiratory viral infections .

I am on the max meds that my asthma nurse and dr can prescribe but didn’t receive a shielding letter due to me being able to manage it well although my asthma nurse was going to get me referred to a consultant after my review this time but fortunately we’ve decided that we’ll see how I go til my next review .The drs now know that the risks for some asthmatics aren’t as high as for others as covid-19 appears to be more risky to people with low immune systems ,diabetes and heart disease so hence they’re now reviewing the list they originally sent out

Birthday60 profile image
Birthday60 in reply to Nutzs47

I’m hoping to get mine lifted as I am over 60 have had asthma since I was a few months old but due to my very active life am at 96% peak flow target but take 4 meds plus occasional nebs

twinkly29 profile image
twinkly29

I agree with Birthday60 that it will be assessment of clinical need that will have been the deciding factor. Their knowledge will have developed over time and, initially, they'll have gone all out to over-protect rather than not do enough. Of course no system is infallible or perfect.

It must be worrying to be told to shield and then not to need to, but the key thing will be the clinical need. It's not being said just to annoy people.

Having said that, as I've said before, no way should people find out this way. People deserve to know it's real and deserve to have the science explained, to be reassured.

Minushabens profile image
Minushabens

Does anyone know of anybody who has received this text? And if so, is there a view on whether or not they should have? I'm probably lucky enough that I can make my own decisions (should they text me) & don't stand to lose much more than not being charged for my shopping being delivered, but the anxiety being caused to people who might be forced to go out against their better judgement must be awful.

Js706 profile image
Js706 in reply to Minushabens

It’s not massively clear yet, at any rate it looks like the order of things was completely messed up as people were meant to be contacted by GPs or consultants first.

Hopefully as charities like asthma UK are pushing for more info (and we should be approaching an update for shielding soon anyway) we’ll know more. But apparently people are able to keep their priority deliveries etc I think.

Daisy2408 profile image
Daisy2408 in reply to Minushabens

I am in a similar position. Had not realised I did not have to pay for supermarket deliveries. Have I been missing a trick?

Js706 profile image
Js706 in reply to Daisy2408

Most supermarkets are still charging as normal for delivery even with the priority passes, I think Asda is the only one that automatically gives free delivery

I’m not on steroids now but I’m only 40 and I’ve twice been hospitalised with pneumonia, the first time I was in intensive care and the 2nd time was 6 months ago.

I hope they don’t just look at what medication you’re on now but look at your whole history. Because realistically, a third pneumonia isn’t going to be an easy ride for me

EvieJo profile image
EvieJo

I think the problem is for some people, this will be an annoyance - but they can continue to do what they feel is best/safest for them. It’s more than an annoyance for those working who may have only been getting any pay because they have the shielding status.

I haven’t had one of these texts so intend to just ride it out till the end of my 12 weeks which will be mid June and then see what the situation is at work regarding returning - hopefully as safely as possible! It all seems to be a bit of a lottery to be honest and comes down to how an individual is assessed (and who is doing the assessing!)

Stay safe everyone x

StanChad profile image
StanChad

I have just read about this in my local paper! Hope it’s right.

StanChad profile image
StanChad

I have just checked the gov.uk website which states the extremely vulnerable list for shielding was updated on 28/5/20. Severe Asthma is still on there? So I’m not really understanding myself at the minute!

EmmaF91 profile image
EmmaF91Community Ambassador in reply to StanChad

I think that when this all kicked off and no one was sure of anything, people may have been added to the ‘clinically extremely vulnerable’ list, when actually they were clinically high risk. Now they know more about how covid reacts to certain pre existing conditions there are re-reviewing. Like I’ve heard that the issue isn’t asthma severity necessarily, but more the uncontrolled asthma aspect (which can be any level of asthma if under treated or poor med compliance, or clinically diagnosed severe asthma). But back when people didn’t know what was what and the gov wasn’t clear on anything, some GPs were putting patients onto the shielding list because the patient asked to go there (for a work note or whatever), rather than cause they clinically needed to be there...

Severe asthma is an official diagnosis (which should be made/confirmed by a tertiary consultant), but not everyone shielding due to asthma has severe asthma, ‘just’ currently uncontrolled asthma (or controlled moderate asthma, but worried at start and put into the list). Remember back when this started they were using a specific medications list to say who should shield with asthma, whereas now it’s more focused on lots of pred courses...

twinkly29 profile image
twinkly29 in reply to EmmaF91

It would be really helpful for everyone if that could actually be officially stated/explained. The shielding does not mean you have severe asthma thing. A lot of people (not here necessarily but definitely on social media platforms) are quite fixed on now having severe asthma - they might be less keen when holidays resume and they have to declare that on travel insurance 😅

Seriously though, if it was clarified people would be less confused.

Lilacsky profile image
Lilacsky

Yes I was put on shielding which I was surprised about as asthma for me Is very intermittent ( I would never call mine severe, grew up with a family of severe asthmatics) so I can go along time ok,

but I rang my doctor and I was told an algorithm was used to pick up on certain words on records when they did the initial shielding list ( I had steroids in last 6 months and had a bad patch) so that would have put me in the category

but she agreed that it’s back under control again so I don’t need to be. She said that gps are meant to look at who is appearing on the list and check it manually to refine what the algorithms highlight.

It’s been a heavy time for them all in nhs, they are doing very well all said, it’s such a one off situation,

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