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Thread 4 Shielding chat

485 replies

Egghead68 · 08/12/2020 09:55

Thought I’d set this up as we don’t seem to have one. Please delete if we do and I’ve missed it.

OP posts:
Thread gallery
9
TOWGA · 02/01/2021 21:19

I was looking at the vaccine information for pregnant women which has now changed, to if your healthy you shouldn't have it, if like me your pregnant and are CEV you may be better having it. When I do get offered it, that will be a dilemma I face, as I'm not sure whether I would take it while being pregnant just in case it harms baby but then I worry about getting ill! Things to think about!

Didkdt · 03/01/2021 00:03

@bloodywhitecat so sorry

My daughter’s school has written to say they will open as usual. The guidance they are quoting is children with an ECV member of the household can attend school, when I last checked in September it was should attend school
They are trying to say that means schools are safe, I’m trying to say the new wording changes the ball game to “up to you”
My consultants secretary isn’t being helpful and he’s no doubt super busy but I need guidance

MarieVanGoethem · 03/01/2021 07:57

Well I’d a fun day yesterday after discovery that GP surgery had declined to supply not only my steroid cream (irksome, but survivable) but my anti seizure medication. I’d not checked that they’d, you know, not felt the need to take a creative approach to my repeat prescription; & I’d not needed to start the new lot of anti seizure stuff as I’d a bit beyond my Rx date. I did only have the one carrier-bag full this month, but that’s still enough to disguise the lack of the 2 boxes in question Blush
After a while on the phone with a very nice lady from 111 (who I think supplied me with all the terms of endearment I missed hearing in 2020: not sure they’re meant to start calls with hello poppet, but in fairness I do sound like an actual child on the phone, much to my chagrin) my very splendid pharmacist got roped in to help & he’s actually dispensed my full month’s supply rather than leaving us faffing about trying to sort getting more tablets to me as well as my having to chase up WTAH happened with my prescription & indeed WTAH has happened with medication my consultant decided to change me over to on the 21st as the pharmacy hasn’t heard anything & hospital supply runs out on Wednesday. (Ahahahahahaha ...)
On the plus side, the fancy!masks that filter out ALL the things (including Covid) I bought in the Fancy Mask Shop Boxing Day Sale came yesterday, so I can hand wash them later. (I know, I know, THE FUN NEVER STOPS.) Much more excitingly, post-wise, my [late] friend T’s mummy is putting zips in some tops for me so I can wear them on days I’ve to have my port accessed, & she’s now got both the long-sleeved tops from the GAP kids sale; & 3 t-shirts from TruffleShuffle, only one of which was in the sale. Somehow I’ve spent more on those t-shirts than I normally spend on t-shirts & I’m not entirely sure what happened. But to be fair, my t-shirts usually come from Qwertee sales or Primark & are kept for years, to be clear so the averaging out at £14.99 each isn’t DRASTIC. And when life offers you a She-Ra “powered by unicorns” t-shirt, to refuse would be churlish, frankly.

@Poppystars
I’m glad you can at least start the year teaching on Teams - I hope you can stay there (& thus as safe as possible)...

@Egghead68
Hopefully the wait for jab 2 to provide its maximum coverage will see things calm down even a wee bit. Is there any chance you could work on non-Covid wards given you’re still CEV, you’ve just been vaccinated? I know the Pfizer vaccine has amazing coverage, but given they do still need staff for non-Covid wards & presumably some of who goes where is [now] dictated by mitigating risk as well as ensuring people with necessary clinical skills are in the right places?
I hope it all goes well, anyway.

@bloodywhitecat
I’m so sorry about your DH Flowers
The advice as to what CEV people should be doing varies between Tiers - only people in Tier 4 have been told to shield, so that might be it? Christmas does seem to have messed with some people getting letters, so if you’re in England, I’d register using the link Egghead provided just to ensure they’ve your DH’s email address so he gets stuff right away. Macmillan have been providing information about shielding throughout the pandemic; & if you’ve not already used it, they’ve a fantastic nurse-staffed helpline who I’m sure would be able to help you with figuring out what you need. Making sure you’re registered should also ensure you’re eligible for supermarket priority delivery slots.
Please come back & talk to us whenever you need to, won’t you? I don’t know if you’ve a thread running somewhere, but tbh I get that might seem A Bit Much whereas knowing you’ve a space somewhere with no pressure to update just the option to have random-anonymous-unconnected-internet!people hear the things you need to say just then might help even a wee bit.

(Backtracking a wee bit: that’s another possible option @user908547 - if there’s a charity for the condition you’re shielding for, try contacting them to see if they can offer any advice.)

@TOWGA
There haven’t been any adverse events involving pregnant women - we’d have heard all about them. Giving anything at all to a pregnant woman is (rightly) such a huge deal that they’re bound to be incredibly cautious, especially with the numbers they’re dealing with. The pandemic’s been going on long enough that they’re now confident Covid-19 itself isn’t usually a danger to mothers or babies at any point in pregnancy. They’re as confident as they can be that the the vaccine is safe for pregnant women - but trying it out on all the pregnant women in the world, at all stages of pregnancy? That sounds really dangerous & unethical, even with a vaccine that’s safe & approved by multiple bodies after all the necessary trials. Other things it’s desperately important pregnant women be protected from (eg ensuring MMR is up to date) but with this the extraordinary circumstances make it really difficult. Can you discuss this with your cardiologist &/or obs+gynae consultant?

@Didkdt
Have you tried contacting your MP &/or local councillors about this? After what happened in London with the 10 Boroughs it’s an ever-hotter topic; & if Questions Being Asked In The House is necessary to get some clarity on what the children of CEV parents actually need to be doing just now... I hope you can get it sorted ASAP.

Egghead68 · 03/01/2021 10:48

The advice as to what CEV people should be doing varies between Tiers - only people in Tier 4 have been told to shield, so that might be it

Making sure you’re registered should also ensure you’re eligible for supermarket priority delivery slots

Oh yes both good points that I hadn’t thought of/remembered - thanks @MarieVanGoethem. I am sorry about all your medication hassle. Your powered by unicorns T-shirt sounds great though and well worth the money!

I’ll talk to my manager/occ health about being redeployed to “non” covid areas (in reality they still have some covid in them in all probability) or remote work. I don’t know whether they will be sympathetic or whether they’ll think “it’s your turn to pull your weight now”. I realise I am very lucky to have had any of the vaccine and to be in a stable job which, thus far, has been very supportive.

@bloodywhitecat yes do please talk to us whenever you want to.

@Didkdt the lack of clarity is ridiculous. I hope you can get sorted quickly too.

OP posts:
bloodywhitecat · 03/01/2021 11:19

Thank you. Macmillan have been bloody useless for us although a friend, who's DH was given a similar prognosis at the same time DP was, has found them wonderful. Our entire journey has been lonely and filled with brick walls. He was that person who was let down badly by the GP and turned away by A&E despite being the same colour as Homer Simpson.

Egghead68 · 03/01/2021 11:53

I think I saw your other thread @bloodywhitecat. I’m so sorry. It’s awful when it doesn’t feel like health professionals have your back.

OP posts:
OrganTransplant123 · 03/01/2021 16:50

I’m so sorry @bloodywhitecat what awful news. I hope you manage to get some support. You could ask to be added onto the ECV list as it is v helpful for supermarket deliveries.

@Didkdt sounds as though we are in a similar position re schools. I feel so stressed about it. The head of our county Public Health requested that primary schools close and the government say no. Confused

If school are open I just can’t see how I can send dd in. I’ve had a liver transplant, no spleen, my kidneys have crashed into stage 5 disease and I’ll need an operation soon so I can start dialysis. I really don’t want covid!

Egghead68 · 03/01/2021 16:54

The schools situation is such a mess. I hope everyone can do what they need to do to stay safe.

OP posts:
MonkeyfromMars · 03/01/2021 19:55

Just popping in but tomorrow is the last day you can register for the four months of Vitamin D supplements which have been reccommended to everyone on the DHSC High Risk list. For some reason, despite getting multiple texts, letters and e-mails, I did not get any information about this that I can see.

Link is here

Babysharkdoodoodood · 03/01/2021 20:42

@MonkeyfromMars

Just popping in but tomorrow is the last day you can register for the four months of Vitamin D supplements which have been reccommended to everyone on the DHSC High Risk list. For some reason, despite getting multiple texts, letters and e-mails, I did not get any information about this that I can see.

Link is here

I registered when they first offered it but have heard diddly squat. I've been getting 4000§ gels from Amazon anyway.
MarieVanGoethem · 03/01/2021 20:54

@Egghead68
The t-shirt amused me greatly. And life is too short for boring clothes Grin
I hope your work are helpful. If they’ve been sympathetic so far hopefully they’ll continue to be so - & also be sensible-pragmatic about where you can be most [consistently] useful.

@bloodywhitecat
I’m so sorry... I know Macmillan can be a bit mixed & it’s really wretched if you’re someone who experiences the bad.

@OrganTransplant123
They really REALLY need to communicate clearly with CEV parents. Cute as wee folk are, they are generally tiny infection vectors. Hence the flu vaccination programme for the primary school age group. Quite how it’s meant to be the case that there’s no risk from the mutant strain... oof, I hope you get it sorted out soon. (Oh & I hope you can get the op you need too. Is it getting an AV fistula made? At least those can be done under local so you can get away really REALLY quickly afterwards.)

@MonkeyfromMars
It was in the letter they sent out (well the version that went out to those of us in England) at the end of last lockdown, with the instructions about the Tier you were to go into (30/11/20). It wasn’t down at the bottom of the letter (but before the full Tier description bumph) & not really highlighted though - the emphasis was really on only asking for them if you couldn’t afford them otherwise, IIRC Hmm Pretty poor they took this long to do it - think it was justified on grounds reviewing evidence re: vitamin D & covid-19 - when they first (effectively) gated people in March. More grating as said evidence review decided that the Vit D is needed because people in the UK are generally deficient in it & that’s been exacerbated by our staying inside more due to & during the pandemic; the claims Vit D helps prevent covid-19 &/or can help treat it couldn’t be substantiated Hmm

I’m (still...) waiting for my series of vitamin D injections to start. It took almost 4 months to sort out who was going to do them & I’m now at 3 months since being told they’d start “soon”. Given they’re what’s being relied on (by, amongst others, the Bone Health Unit) to raise my calcium levels as well as “just” pulling my Vit D levels up from the molten core of the earth... Hmm (This is with me chasing things up, yes. My B12 injections are only happening at all because my lovely haemophilia nurse has done [some of, I missed a few doses] them.)

MonkeyfromMars · 03/01/2021 20:59

It hasn't been in any of my letters, I have actually had Vitamin D injections privately in the mean time - the majority of the people I know who are CEV also have not been told about this (and we've all had multiple letters).

It is good that people know about it though!

FourTeaFallOut · 03/01/2021 21:04

I'm absolutely stumped at this point. I'm tier 4, cev and have no idea what to do with my youngest who is in primary school. On the one hand, I feel like things are pretty risky and on the other, I feel like he's never needed to be in school more.

I'm so spent with being the liability in our house. I'm sick of it.

MarieVanGoethem · 03/01/2021 21:04

@Babysharkdoodoodood
I think the letter said they planned to start distributing them in January, so maybe if you’ve been A Good Little Selachimorpha Matt Hancock will send you a present.
(Because it’s Vitamin D I’m now imagining him singing “Bring Me Sunshine” & doing the Morecombe & Wise skippy-thing to drop the packages off to people personally. Presumably with their MPs in tow. Or maybe Chris Whitty/devolved CMOs as applicable. There’s a vision...)

VaTeLaverLesMains · 03/01/2021 21:19

Monkey Thanks for link about Vit D. I'd just ordered some online today,

I also didn't get info on it despite getting multiple ecv letters, emails etc.

I am also feeling torn about dd going to school, which she needs to do (exam year, better mental health at school ) and the risk, especially with the new strain.

How long do we think before the vaccine is available? I've been told,to wait at least 6 weeks from last chemo, which I think may be well before I'll be offered it, as I'm under 55.

MarieVanGoethem · 03/01/2021 21:21

@MonkeyfromMars
Everyone in England should’ve had it in their email + letter dated 30/11 so it’s hugely concerning if some people have received only partial correspondence. If the devolved nations decided to send the information out separately & it’s been lost, that’s another big worry.

@FourTeaFallOut
Flowers
You aren’t a liability. How old is your DS? Is he able to work at home if you keep him at home? And if it’s social/friendship stuff you’re concerned about, is he able to play out at all? (Realise we’ve not really the weather for it atm, but going cycling with a friend or something if they’ll distance & wear masks?) Letting him Zoom/FaceTime/whatever friends more? Seeing if - if he’s not already a member - there’s space in a local Cub/Scout Unit who are meeting online?
Sorry if that’s a useless braindump, no need to answer any of it. The only really important bit is that you know you’re not some kind of inconvenience.

FourTeaFallOut · 03/01/2021 21:30

He's six, soon to be seven and I wouldn't have a problem with childcare. But he had such a hard time getting back into school when he rejoined back in September and he'd only just began to find his feet again at the end of term.

His teacher has plans/ had planned to rearrange some things in the classroom for him to help him be more comfortable and had just got the school sen lead (I'm not that's the right title) to see if there's more that could or should be done in class for him. I don't know, I feel like I'd be robbing him of something important if he didn't go.

Didkdt · 03/01/2021 23:30

@FourTeaFallOut my younger child is the same age, school have put in someone to talk to a lot of niggles in settling were down to worry about shielding
We’ve made the decision not to send her back this week we’re also Tier 4 with rates higher than many London boroughs, several people we know have become infected over the last couple of weeks.
I can’t suggest what you do but I can say once you’ve decided you’ll feel more confident personally I think it’s a matter of days before all Tier 4 primaries close. I’m not sure they all need to but you’ll be much more aware of what community transmission is like where you are

FourTeaFallOut · 04/01/2021 06:34

Thanks MarieVanGoethem and Didkdt.

Our rates had been on their way down and I was feeling confident about him going in but yesterday they popped up by some margin just as all the other local schools started announcing closures.

I'm not usually so bad at this stuff but after this year it feels like my risk assessment calibrator is burnt out.

MarieVanGoethem · 04/01/2021 07:10

@MonkeyfromMars & @VaTeLaverLesMains - if you’re in England & your emails & letters dated 30/11 didn’t have a section about Vitamin D (& the ordering thereof) just before Hancock’s signature would you have the time to contact the DHSC? It’s really worrying me that they seem to have either managed to send out what must have been a draft version of the thing - in the soft & hard copy - to some people; or they’ve deliberately not provided some people with that information. (I’m not entirely sure which would be worse Hmm )
(Sorry to bother you, but @Outnumberedwoman, @UnholyStramash & @BeyondThunderdome: did NI, Scotland & Wales provide information about Vitamin D to you at the end of November together with “well you can do Christmas, but maybe think about eating outside or just doing a Zoom call - just don’t blame us”? [Also, UnholyStramash, extra!apologies for hauling you into the thread when you may very well not have been missing us in the slightest. Hope that you’re ok.])
I do indeed have an impressive capacity for letting what might seem to other people like inconsequential things stop me sleeping worry me, but while it always makes a pleasant change from Actual Life Stuff, in this case, possibly lots of people have been sent incorrect information &/or not sent all the information they should have been & whether that’s an error or it’s deliberate it’s deeply troubling.

@FourTeaFallOut
Oh FlowersCakeBrew
He’s still only wee then, and if he has SEN of any kind I totally understand that making things more complicated. That said, they may struggle just now to manage making changes even when really motivated to help just because of the additional pressures of being in Tier 4. I think @Didkdt gives you some excellent advice (& I’m glad you’ve a plan for your DD btw).

Overthinking missing Vitamin D information muddled together with Pride & Prejudice on the radio (well, via BBC sounds, so the whole of it’s available) has meant the fractured bits of sleep I got were filled with very strange dreams. Almost sad I’ve not yet reached Polluting Pemberley, because doubtless that would be particularly special - declining Mr Collins’ proposal was a lively muddle enough Confused

MarieVanGoethem · 04/01/2021 07:30

@FourTeaFallOut
Botheration. Despite time difference, I managed to cross posts with you, sorry.
You’re very welcome; & you’re also, more importantly, not being bad at anything! Everyone is struggling with these decisions, pretty much, without having to factor in the almighty risk of their being CEV! Every single thing, even the most basic stuff, has been made harder by the pandemic; with the extra layer of then having to try to be super-safe (if only we could control how other people behave around us...); & for you - & all the other parents who’re CEV - you’re then trying to balance that safety with the needs of your children & nobody’s providing any real help/support when those two things are in conflict.

Still reassessing is Being A Good Parent, but it must be absolutely crushingly exhausting - especially when lots of people on wider MN will hold forth about how it’s silly/ridiculous/selfish/whatever to keep children at home. They’d almost certainly say, if asked, they of course don’t mean if a parent is CEV. But the “of course” isn’t a given when you feel, in those most-tired & heartsick-heartsunk moments, they’re right.

In case I’ve not made clear enough, they’re not; & CEV parents like you, @Didkdt & @Outnumberedwoman are doing an awesome job Flowers

FourTeaFallOut · 04/01/2021 09:09

Thank you for all the kind words. I took him in. We have reducing rates in our hospital beds which, to my untrained ear, suggests we are not grappling with the new strain in any large number yet. If he only gets a week or so before they all close down that just might be the bridge he needs to stay positive about going to school when they reopen. And you're right - it only took making the decision to feel better about the decision. For better or worse, it's done.

OrganTransplant123 · 04/01/2021 10:46

I feel the same @FourTeaFallOut about being the liability in the house! It so hard to know what to do for the best. My dd found going back in September really difficult too. Thankfully our school have closed so I didn’t have to decide. Our rates are sky high and the hospital has declared an emergency. It sounds as though your area is better than that. I hope your DD has a good day.

Thanks @MarieVanGoethem I can’t have a fistula because my arteries are too small! I could but it would take several ops so I’m hoping for PD dialysis. I’d need a tube fitting but I’ve not been assessed by the surgeon yet and apparently previous surgery can cause problems. Not sure what the plan C would be!

FourTeaFallOut · 04/01/2021 10:52

I shouldn't have said that. I posted in a real funk last night. I know everyone is in the same boat here. I just, like most people with a chronic illness, deal with it by minimising and getting on with it and it's hard when your Achilles heel is under your nose all day. Ok, I'm labouring under too many metaphor now, but you know what I mean.

Babysharkdoodoodood · 04/01/2021 20:45

Oh god. I'm never leaving home again, am I? It just gets worse.