CEV

[Bookworm55]

Living with Covid: Shielding advice ends for vulnerable

thetimes.co.uk/article/c2f3...

[KittyJ]

We don’t honestly expect the government to tell us what to do now, do we? I thought shielding ended ages ago anyway for the majority. Everybody’s health is different and we should by now know how vulnerable we are or aren’t and what we need to do ourselves. Or maybe it’s just me 🤷🏻‍♀️

[Bookworm55 in reply to KittyJ]

Yes I think you’re right - but then I’m not CEV. I have a friend who is and has been given a ‘fast track’ pcr to use if he tests positive so he can get immediate anti- virals. I would like masks to remain in some high risk areas although it seems that the FFP masks do give the wearer significant protection as well as protecting others.

[AgedCrone in reply to KittyJ]

Yes I agree…I think we all have to behave responsibly & do what we think is safe for each of us.I don’t think we should start bothering our GPS for individual instructions ….All the people who are getting new symptoms they are really worried about need those appointments…….although it seems GP appointments are still like gold dust.

We know what we need to do to feel safe…it’s different for all of us…but we have mostly got this far safely….so seems like we “carry on as before”.

[Runrig01 in reply to KittyJ]

Anyone who follows government guidance, thinking they are trying to keep them safe is a fool. This was only ever about protecting our NHS. It has now been shown that the omicron variant hasn’t resulted in a surge of admissions, which is what was initially feared. It’s now everyone’s individual responsibility to keep themselves safe. Although I empathise with those who work, who are now being forced back to work. Although those who are at severe risk due to immunosuppressants have still to follow government guidance, which will be reviewed 28th February. Apparently the health secretary has said that this group should continue to work from home for the foreseeable future.

I continue to wear my mask in shops and anywhere that’s busy. Although yesterday I nipped into sainsburys and there was only me and 2 other customers wearing masks, all staff were wearing them. I suspect some companies will go against advice of no isolation, the nhs being one of them who are still pushing for it to continue.

Here’s the current guidance for those on immunosuppressants

gov.uk/government/publicati...

[Thingybob in reply to Runrig01]

Thanks for that link. I haven't received any letters etc yet and couldn't find the latest advice in a search. 👍

[Runrig01 in reply to Thingybob]

It’s ridiculous how it’s not being made available to everyone that it affects. It’s the HSE website that mentions review 28th

[AgedCrone in reply to Runrig01]

It’s still very subjective re RA isn’t it?RA still seems to be treated like that little finger ache everyone thinks we are all suffering from…& the information held by whoever you contact if you do test positive seems sketchy to say the least.

I still think I’d better not catch Covid……I honestly don’t think I would have the patience to be polite enough go through the rigmarole it would obviously entail.

[Runrig01 in reply to AgedCrone]

Absolutely, I plan to continue to try and avoid getting it. The link hopefully will help those on immunosuppressants argue their case to continue working from home.

[AgedCrone in reply to Runrig01]

Absolutely….But when you end up arguing your case with someone who knows a heck of lot less about your condition than you do….& even less about your medication….you’re on a loser!I still shudder when I see the look of sheer bewilderment in the eyes of the politicians who have any say!

Hope Eunice is staying well away from you…..I just shot into see what was going on…then realised the storm noises I could hear were on the TV…but it is getting very gusty.

[Runrig01 in reply to AgedCrone]

I’m right on the coast in the south east, so we’re on red alert. Very strong winds, some of my fencing down, and have removed anything in the gardens not tied down as a raised plastic bed which went flying across the garden, despite being heavy and full of soil. Day for staying in and watching tv 🤪I do agree with the issues people have of trying to get people to see, the true effect of rheumatoid conditions, and they can include GPS. Stay safe during this horrid storm 🤗

[AgedCrone in reply to Runrig01]

I have dragged some of my rattan furniture into my hall…it was tied to the decking with bungees…..but escaped & was flying around.I do miss not having a garage or my good old garden shed!

It is the noise of the wind that is the most frightening …& what I find strange…..it’s just very, very windy…. we haven’t had that much rain…& the sun is shining!

Very odd… I do hope it blows itself out very quickly I’m finding it very threatening.

[Runrig01 in reply to AgedCrone]

Stay indoors and keep safe. It will blow over soon 🤗

[TytoAlba in reply to Runrig01]

I'm pretty lucky because the organisation I work for has already changed most people's contracts to permanently working from home, it must be saving them megabucks or they wouldn't have bothered. But just a thought... even if we do everything we can to avoid getting it and have been provided with a test kit because we're CEV (I haven't been sent one yet) but the government closes down testing stations and stops providing lateral flow test kits, how the heck are we supposed to know if we have Covid or access antiviral medication?

[Runrig01 in reply to TytoAlba]

I have wondered this myself. It may be worth raising it with your MP. I did get a kit, so assume it will still be replaced for those on the list, but don’t know for certain. Have you checked the eligibility to check if you qualify, if you do then your GP can refer you. May be worth ordering some LFTS before they do away with them. At least then if you get a positive your gp can refer you. If you don’t meet the criteria you can self refer to the panoramic trial which is using the molnupravir, as long as your over 50 or age 18-49 with a health condition.That’s good that your employer is supportive, I know many who’s employers are acting like the virus is no longer a threat to anyone. Ridiculous.

[TytoAlba in reply to Runrig01]

I definitely qualify as I have Enbrel and Methotrexate and I've had the letter from my rheumy consultant, just no test kit yet. Your comment about approaching my MP made me giggle. Emails to him are answered with a generic message which says he doesn't respond directly to constituents and I'm yet to get a reply to a letter. I'm not entirely sure what he's paid for but it's a safe seat so I suppose he doesn't need to bother.

[Runrig01 in reply to TytoAlba]

I had a similar issue with my MP when I asked her to help with 3rd vaccine as both GP & rheumy denied it was their job. She wrote back saying contact gp. Do I sent her another email saying I expected her to do as many other MPs around the country were doing, and intervene to resolve it. It worked, she got CCG to speak with my rheumatologist and had the letter in the post the following day. You do wonder what they get paid for. I’ll attach a copy of the letter sent ti GPs explaining their role in referring patients to CMDU. I’m also on Etanercept and MTX, I did get my kit. I think it’s because my HP has both on my repeat prescription, although the biologic is just for information. So they know to advise me to stop if they prescribe antibiotics or antivirals. It seems to be patients who are solely on the hospital records that are being missed. 🤗Here’s the letter:

england.nhs.uk/coronavirus/...

[TytoAlba in reply to Runrig01]

Ooh! I've had my Rheumy letter but no test kit has arrived as yet. I wonder if my GP's practice manager will bust a gasket if I send them a copy of the letter you attached? I can't even get them to agree to issue my MTX script if I can't get a blood test appointment for the day it's due. Life was sooo much easier when we could just rock up for a blood test without having to make an appointment about 6 weeks before you need it. No idea how to get my MP to even acknowledge my existence as they seem to have set an auto-response to every email that says they don't communicate directly with constituents so well done for getting yours to respond, even if their first response was a brush off, at least you got there in the end.

[Runrig01 in reply to TytoAlba]

I believe the letters sent by rheumatology they usually suggest contacting 119 fir the kit, they don’t trigger automatic issue of a kit. Unfortunately the government say they have run out of kits, although not announcing that. It’s the reason why they are now accepting LFTs registered on the government site. I would probably just send the letter if you test positive, as the gp is unable to refer you to CMDU till you test positive. If you send it now you risk it being filed, and no one realising it’s filed. There is a similar letter for specialists as well explaining their role if it’s only them who have the biologic recorded and coded. Coding is what triggered the issuing of kits, so if you’ve not been coded by your surgery re immunosuppressants that n mm at explain why you’ve not been contacted by NHSE. 🤗

[Whitegate in reply to Runrig01]

At Sainsbury in Falmouth , Cornwall about 2 in 3 customers wear masks

[Runrig01 in reply to Whitegate]

Same here, I went yesterday forgetting it’s half term, so loads of kids right in your face without masks. It’s frightening how many think it’s all over

[Neonkittie17 in reply to Runrig01]

👏🏻💗

[liveinwoods]

I live in the US and no protocols have been established for those of us who are immune suppressed. You are left to your own devices. Since I am a Rituxin patient, I have to be especially cautious! I have read too many scholarly articles to be oblivious to the danger of Covid infection. After several different conversations with my rheumatologist, and 2 antibody tests and B cell tests, he is referring me to an immunologist. I think he just does not want to be bothered anymore. When I see the immunologist, I will request a letter to be attached to my online medical file recommending a speedy intervention with an appropriate medication. My GP is a nice young man, but he is not does not understand RA and the complications of being immune suppressed. For this reason, my goal is to find out what medication the immunologist would recommend. They have discontinued the use monoclonal antibodies in the US claiming they are not effective, so this has to be something that does not require a response from B cells. Thanks to all the replies to your question, I do not believe I am being a “nervous Nellie”! You have to advocate for yourself for sure. I think most of us understand that. Be safe!