At the beginning of the lockdown in March I had a phone consultation with my GP to confirm my asthma status as severe, it is. So I began to shield and wait for 'the letter'. To date, I have not received one. I also noticed there has been a change in advice regarding shielding,(who it applies to etc). I spoke to my GP again last week and she has said that it is now people with brittle asthma who need to shield. So my status is still severe but the govt have downgraded the risk???????
Has anyone else had this experience? I now go out for short walks, nothing more has changed for me.
Thank you in advance
Lou 🙂
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Louise-66
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Those who should have been told to shield are those on steroid inhalers plus another form of preventer medication (these may be combined in a combination inhaler) plus continuous or frequent courses of oral steroids (initially 4 courses or more between June and December last year, but presumably also since then).
This is NOT the same as having "brittle asthma". Brittle asthma (I think the previous name for the condition of "severe asthma") is asthma that is difficult to control even on high levels of medication. Of course people with this specific condition will be in the shielding group, but not everyone in the shielding group have severe/brittle asthma. It's also a condition that's usually diagnosed by specialists, not the GP. Of course now many people with shielding letters will think they have severe asthma (the condition) when they don't.
The risk hasn't been downgraded. The criteria seemed to evolve but I think that was partly because organisations were trying to give information out as quickly as possible and in as much detail as possible - and then people became fixated on inhaler names and so on.
GPs should have added people to the list (and still be doing so as guidance says there's no cut off date) if they fit the criteria - but some GPs seem to be saying it's nothing to do with them - this isn't correct and is also unhelpful!
What medication are you on for your asthma? Do you see someone in a respiratory clinic?
In which case it sounds like you don't have severe asthma (the condition) and your GP sort of jumped the gun in saying you should be shielding/had severe asthma and, now that you've (completely understandably) queried it, are sort of covering themselves by saying it's brittle asthmatics who are shielding. If they had not mislabeled you at the beginning of march it would have been less confusing!
All asthmatics are classed as clinically vulnerable (as distinct from the extremely vulnerable/shielding group) and should stay at home where possible and minimise contact with others when they are out and about. If that helps?! But it does sound as if your GP was wrong initially.
Hi I take fostair 2 puffs twice a day, alvesco 2 puffs twice a day, atavent 2 puffs once a day. 10mg monkeluist at night, slow phylin twice a day, fenafexdine 180mg once day. Home nebs. Xolair injections every 4 weeks and on pred more often than not. Still no letter, GP still said it’s not up to them. However my respiratory consultant said shield. Emailed me a letter sayingIm severe and follow government guidance but it’s not official and no one accepts it!! As an agency nurse I don’t get SSP nor furlough. No universal credit as husband earns too much and my son is asthma on steroid inhaler. Without the letter I can’t get deliveries and beyond fed up. I force myself everyday now into a routine to starve off depression but I feel like it’s a losing battle now.
That's rubbish. Can you contact your respiratory consultant and see if they can do something more official or write to GP telling them to do so? Not sure if that would help though 😣. People on biologics aren't automatically included (I really don't know why) but BTS say those on biologics are high risk so that's where GPs and presumably specialists should be adding people - but I don't know what you do when they just say no to it.
I understand it's not automatic being on biologics but the fact I'm on 3 inhaled steroid inhalers and 3 different tablets excluding the regular pred doses I have to go on, I thought I would be. Especially when a neighbour who has same GP has letter and gets deliveries and she only has a Ventolin inhaler she said she hasn't used all year!! I've lost my savings, lost my career and may lose my house. My children who are meant to be starting university won't get any supporting money from me now as I've spent it on surviving! its beyond infuriating and depressing
Can you contact the practice manager at your GP surgery? It definitely is
GPs who should be adding people now. Doesn't seem right that they're happy to add someone who's only on ventolin that's rarely used (although I suppose they may have other underlying conditions) when they're refusing to add someone whose asthma is harder to control. Specialists can add people as friends have been added that way - but then they need to provide letters that are accepted.
They won't move on it, says they have nothing to do with the letter. Therefore I will be taken of my agency's register because I haven't got the letter and not accepting work!!
Try talking to your hosp. They can write you a shielding letter if needs be. Explain the issue and they should sort it for you! GPs CAN now add people who have been missed (they have been doing so for a while). Good luck!!!
make a complaint to nhs england if they're saying the letters aren't anything to do with them.
it would be different if they said "yes we're sending letters but sorry you don't meet the requirements" but saying it's nothing to do with them is surely wrong
I had a doctor tell me that they didn't have anything to do with it, and a receptionist tell me to contact the health board who couldn't help. Turns out, the GPs can now add people to the list. I would try again, asking for another doctor - preferably the one involved in adding people to the shielding list.
I got extremely lucky that one doctor checked with another doctor and the issue was corrected so I am now added to the list.
I think the fact that some official guidelines refer to severe asthma as a severity/measure of outcomes and others as the condition causes unnecessary confusion.
when the shielding first started, every asthmatic working at my doctors shielded and the shielding requirements were relatively broad.
now the gps are going through the list and seeing who should and shouldn't be on it.
so the huge sigh of relief i had when my letter dropped through the door has turned into daily anxiety that i'm going to get another one saying "nah, not really"
it's ok for those who don't want to be shielding but for others it's terrible. they should have just kept us all on the list until the end of june unless people opted out. and the list should take more into account than just medical facts.
a moderate asthmatic who works as a supermarket cashier is in my opinion a higher risk than a severe asthmatic who is able to work solo. but that's not taken into consideration. a quarter of all hospital deaths are diabetic but they're not on the list. my sisters going nuts because her boys going to have to go back to school and he's diabetic.
i'm expecting that not everyone will have their shielding extended (and i include myself in that.) i would imagine the list will get smaller and more specific as time goes on.
plus there's the worry over jobs. my companies not going to want to keep me on if i have to shield for a year. the government should be furloughing the shielded to ensure their jobs are kept otherwise i'll be forced back to work and the money spent furloughing me will be nothing compared to the amount spent on my hospital treatment.
Can you please please reassure your sister her children DON'T have to go back to school it is HER choice. NO fines will happen please reassure her of this.
I receive the letter the day after the announcement - it depends on the number and type of drugs you are on and your age. I was surprised to be included but as I take 4 drugs, have had asthma since I was a few months old, am over 60 I guess they are being cautious. I am rarely ill - keep fit by XC skiing and Nordic walking and am not overweight.
I have brittle asthma but I haven't had a letter. My GPS couldn't organise a p up in a brewery. My locom Dr said as I haven't been in hospital in a Yr I don't need a letter. So who knows
It’s mainly decided by steroids now. Officially it’s if you’ve had 4 or more steroid courses in the last 6 months, or are on maintenance steroids (as well as being on 2 asthma controller drugs). If you have brittle asthma then try speaking to your specialist hospital and see what they say. But it’s control they are worried about. Those with poor asthma control end up needing more assistance in hosp than those with good control, hence why they are needed to shield. So if you haven’t had any steroids in a year (as well as no hosp trips) then you technically don’t need to shield. But as I said speak to your consultant and find out what they think you should be doing.
Hi Louise, I was totally confused, too. Criteria did change. I am on maximum steroid inhaler and other treatments for my asthma and had lots of oral steroid courses last year. However, I was told that the 'goal posts' were changed at the last minute and I missed out on being in the 'shielding' category because of that. Hope you're taking great care but enjoying the outdoors.
I haven't had the official NHS letter but I have had a letter from the respiratory team at the hospital telling me to shield. I am currently on furlough but worried that this may be phased out before it is safe for me to return to work. I am a key worker (support worker for adults with learning disabilities). I am now concerned that my letter won't be accepted. My boss used his discretion to furlough myself and my husband due to our underlying health conditions.
If you have a letter from a doctor telling you you need to shield then it should be accepted. Some people have ‘only’ been sent shielding letters from their GPs (within the last couple of weeks too). Furlong has been extended til October, by which time they should have a plan for us shielders (reviewing in June). Hope that helps calm some of your fears
I haven't had a letter, I don't meet the steroid tablet criteria but asthma UK advice based on NHS Respiratory Director said those on high dose steroid inhalers were also recommended to shield.
My GP explained would not get a letter but told me would be sensible to shield anyway.
Luckily I am freelance and work from home so could carry on working and didn't need the letter. My GP guidance enough.
I am on
Duoresp Spiramax 160/5 - 2 puffs twice a day and can take up to an additional 8 puffs throughout the day. (idea use this instead of Ventolin)
Ventolin 200 Rotahaler as and when needed.
Monteleukast
Cetirizine one tablet twice a day all year round not just Hayfever season
Fluticasone Fuorate nasal spray.
I also use a CPAP machine for OSA and Hypoventilation syndrome.
Also on 3 tablets for high blood pressure (high BP Cause and overweight as result of long term PolyCystic Ovarian Syndrome (PCOS) causes metabolic syndrome and insulin resistance)
Prob as a result of PCOS have to take daily prescription of maintenance dose of vitamin D 1600unit a day and Folic acid
I had a similar issue this week - I had been told to shield (and repeatedly told by Doctor 1 that if they were me, they would shield but more regulations beyond just severe could come out), but work told me they may need proof.
Doctor 2 (D2) told me that I should never have been told to shield and no record of it as it's only people on injections or three courses of steriods or more. UK and Scot guidelines both say this. I was terrified of telling work. Also,
I also had issues getting MH medication increase. I cried so much that the doctor said they would call me back the next day.
"Lucky" I was so distressed as the next day D2 tells me that they've spoken to D3 (in charge of very high risk patient collation) who said that due to the strength of my inhalers and my anxiety. My wife handled most of the call to sort out medication
The day after (so day 3 from the start), D3 calls me. I was absolutely terrified as I thought they were going to say it was a mistake. It seems D1 told my wife and not me that I would get a call, I was just told paperwork would be sorted out by D3 - or maybe I misheard.
D3 said nothing about anxiety, instead he said the strength of my inhalers would compromise my immune system.
In my cases, I was signed off for MH for the entire winter period, except Jan-mid March. So I only took one course of steroids as at that point I was avoiding seeing GP. I was essentially forced to see GP by 111 after I had to call for potential coronavirus re: work. In the few years prior, I was over the 3 courses a year minimum and so didn't feel safe being 'well' because I'd essentially been in lockdown for months.
I also felt guilty for now being ill enough.
I'm on Fostair 200/6, 2 puffs twice daily, or when ill 4 puffs twice daily plus Montelukast and with a rescue prednisolone in waiting. Plus Dymista nasal spray, fexofendadine 180mg, azalestine eye drops and a collection of less important bits and bobs.
So I know I'm not the most severe asthmatic out there, but I work in customer service and as a carer so my contact risk is high, imo.
The shielding asthma group in Scotland is: If you have asthma you are only in this group if you have severe asthma. Having severe asthma means being on regular inhalers AND long term steroid tablets, e.g.prednisolone, OR regular injections to control your asthma.
However, it also allows GP discretion particular with regard to steroid risk.
I am advised my letter will be here in 6 days.
I find it all really confusing , I have had a letter from my GP advising me to shield and 9 weeks in. I've had repeated conversations with GP as feel they are being over cautious with me , on relvar lower dose and montelukast but only 2 steroid courses from june 2019 to dec 2019 ( not 4 as guidance states) but did have a hospital admission in october (pre meds on now, been stable since , no itu ventalation etc) and because of that they say I need to shield. I feel guilty not working and finding shielding hard mentally. Frustrating GP knew nothing about governments plans to reaccess shielding list and no idea of when it could potentially end or extentions to 12 weeks etc. Don't want to moan but feel like the forgottem group.
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