Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

CEV Captivity

113 replies

Gillgardens · 19/07/2021 13:42

I wondered if others in the CEV category are finding that Freedom Day is actually captivity for them? The government's advice to avoid those who aren't double jabbed is ridiculous...how can anyone possibly know. So as the world opens up for others, for us it remains firmly closed. After 18 months I was just getting to the point I was going to risk going out, but now the freedoms for others gives me little choice but to remain shielding. It used to be "protect the vulnerable" but now it is "forget the vulnerable".

I really do not object to any decisions others make and it is of course now legal for others to return to a semi normality, and I hope others can enjoy that. For me though this is the worst, and most dangerous, time since the pandemic began. There is literally nothing I can do to protect myself other than follow doctor's orders and stay home. And now there is no official shielding, there is no legal protection for those of us who are CEV too - there is no back to normal for us!

It is so so scary....please tell me I am not alone.

OP posts:
Noterook · 19/07/2021 19:37

Have you spoken to occupational health? We have someone on the team, and although management had informally said they could work from home for as long as needed, they had it formalised through occ health who recommended they work indefinitely from home, and if/when they feel ready to go back to the office that can be arranged.

PastMyBestBeforeDate · 19/07/2021 19:49

Luckily it's just me that's the at risk one so a less bad situation than you. Hopefully her consultant will be able to make one leap ahead now 12 year old are eligible.

onceivepostedidontcomeback · 19/07/2021 20:07

I'm CEV and in Scotland so still another couple of weeks to go.

For me, lockdown was horrific and to be totally honest I'd have been better off not here. It is no way to live and I'm champing at the bit to do more. I do believe there should be more help for CEV who don't think like I do though.

Egghead68 · 19/07/2021 20:44

If you're CEV, then by default you have a disability

Really? I am CEV but don’t think I have a disability. I lived a normal life prior to Covid. I doubt I am protected by the Equalities Act.

Micemakingclothes · 19/07/2021 20:53

My DH got his antibody test when he was offered a spot in a research study. They needed to prove the problem existed.

He didn’t have any antibodies.

Bagelsandbrie · 19/07/2021 21:04

I feel so sorry for people with a CEV child. I can’t imagine how distressing that is. Sad

I am the one who is CEV in my family. I have lupus, Addison’s, sjorgens, kidney issues, pituitary tumour, and basically half a medical book of shit. Anyway. I’ve essentially had my head in the sand. I have a son who has autism and learning disabilities and needed to attend school throughout the whole shitshow for his own mental health and my physical health (I needed the break to rest) and my dh works in healthcare so has worked outside of the home throughout the whole thing. So no shielding for me, no point with those two issues whatsoever. We live rurally, I just went to the shops first thing in the morning when it was empty and went on walks. But now - double vaxxed- I just think I have to get on with my life and although I won’t be going to any concerts or night clubs I just feel any of my conditions are likely to kill me and chances are Covid being double jabbed might not so I just need to crack on. I’m not hugely confident about it but I really don’t want to spend another god knows how many years of what could be my last good years of health shut up like a fart in a lift.

I’m still wearing a mask. My dd aged 17 who works in retail is still going to wear a mask. And I’ll keep as much distance as I can from everyone. And that’s all I’m prepared to do now. And to hope for the best.

Backofbeyond50 · 19/07/2021 21:49

Yeah CEV are told to avoid the unvaccinated and enclosed spaces.
School kids and school staff are buggered both ways especially as no plans to vaccinate children.
Great job Boris!
Bit of a a problem for dh too as we have 3 kids. I think the older two may eventually qualify for a vaccine as relative of CEV but not sure when.

Leftbutcameback · 19/07/2021 21:50

I’m CEV and don’t have a disability, but my condition is in my lungs so covid is obviously a real worry, and catching it could exacerbate my condition to a disability

pastypats · 19/07/2021 22:04

Give it a few weeks and we will all be locked down again

FizziWater · 20/07/2021 18:45

Anyone CEV and worried about how well the vaccine has worked, I posted this on another thread.

I've been doing the VirusWatch antibody tests for several months and just came across this with some preliminary findings.
Some very reassuring data on both vaccines after two doses.

They were looking at people with underlying conditions such as immunosuppression (which I have) and other high risk factors. After one dose there were some poor results for AZ but after two doses they were indistigushable from Pfizer and
Following a second dose, high S-antibody levels (≥250U/ml) were observed for nearly all individuals (Figure 2)

Kazzyhoward · 21/07/2021 10:05

@Egghead68

If you're CEV, then by default you have a disability

Really? I am CEV but don’t think I have a disability. I lived a normal life prior to Covid. I doubt I am protected by the Equalities Act.

Then read the definition of disability as per the Act which has been reproduced a couple of times above.
Egghead68 · 21/07/2021 11:21

Yep - don’t meet the criteria.

TheWordGenderIsAKAStereotypes · 21/07/2021 14:50

@Kazzyhoward you are incorrect. A friend of mine was advised to shield due to not having a spleen (sorry there is probably a "proper" medical word for that!). A condition which had no substantial adverse effect on her normal day to day actitivies prior to CV.

"that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities"

Shielding/CEV status is not automatically equal to having a disability.

Kazzyhoward · 21/07/2021 15:01

[quote TheWordGenderIsAKAStereotypes]@Kazzyhoward you are incorrect. A friend of mine was advised to shield due to not having a spleen (sorry there is probably a "proper" medical word for that!). A condition which had no substantial adverse effect on her normal day to day actitivies prior to CV.

"that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities"

Shielding/CEV status is not automatically equal to having a disability. [/quote]
It DOES have a "substantial and long-term adverse effect on your ability to carry out normal day-to-day activities" in the current climate though, doesn't it? Just because something didn't class as a disability a couple of years ago, doesn't mean it doesn't class as a disability in a different time, i.e. when "day to day" activities can't be done because they're at higher risk from such "day to day" activities when Covid is rampant.

Original poster
Gillgardens · 22/07/2021 14:41

Shielding/CEV status is not automatically equal to having a disability

I agree with you TheWordGenderIsAKAStereotypes. I am CEV but do not have a disability....would happily admit it if I did have. I was trying to explain and tend to think of it like this:

Say somebody cannot swim. They are fine in everyday life, work, socialise, do anything and everything just fine. But then one day they travel on a boat and it sinks. They will not survive because they cannot swim. It will kill them but not because of a disability, but because of something that "on land" is not an issue but IS in the water.

Hope that makes some sense (probably not). But I do know from my own adult son who IS disabled AND CV (and filling in a zillion forms over the years) that you can't claim you have a disability for the equivalent of not being able to swim. His disability is always present, and affects what he can do or not do (that seems to be the essence of a PIP application). Mine in normal times is present but would not affect what I can do or not do. There may be some argument that the rules on disability need to be different in these covid times, but right now my understanding is that they do not cover situations like mine.

OP posts:
TheWordGenderIsAKAStereotypes · 22/07/2021 15:43

Just because something didn't class as a disability a couple of years ago, doesn't mean it doesn't class as a disability in a different time, i.e. when "day to day" activities can't be done because they're at higher risk from such "day to day" activities when Covid is rampant""

I see what you mean @Kazzyhoward but I don't think the current situation confers an automatic disability, because they are conditions not disabilities? I'm probably not explaining myself very well. A condition doesn't always translate to a disability even if there is a global pandemic, as that's circumstances? It's quite interesting thinking of this conversation from social/medical disability models but I'm a bit too knackered today to think properly!

I can only imagine though the responses if someone who had a condition such as not having a spleen which didn't affect their life at all, tried to claim disability benefits such as PIP based on the CV circumstances. Especially as shielding is officially stopped atm.

Sometimes I think it's just shit luck Confused and I say that as someone who definitely has disabilities. Society fucks us over even without the presence of CV. I do think we should all lobby our MPs/government for proper employment protection whose health/life is substantially more at risk under the circumstances. (Although I myself a am a lot more at the sanguine end of the spectrum when it comes to shielding)

Mistymountain · 22/07/2021 15:56

A few other people have mentioned FFP3 masks, you can get N99 or N95, are these not an option for CEV people? It must be better to wear a really good mask yourself, rather than rely on other people's dodgy choices

TheWordGenderIsAKAStereotypes · 22/07/2021 15:59

Actually I'm not sure sanguine is the word I'm thinking of? Relaxed maybe. I recognise though it's circumstances that allow me to be more relaxed, not so much my health conditions as they are risky, but my situation at home. I fully understand people with younger DC or single parents or employment being a lot more worried and wanting to shield. I support employment and income rights for us but also think we need to take care of our mental health as it's just as important as physical health. I think the government successfully put the fear of God into us and are now trying to play down their previous strategy...

TheTallOakTrees · 22/07/2021 16:42

@FizziWater

I'm immunosuppressed so one of those who the vaccine may not work on. I've had antibody tests and it's very reassuring to know they did work and I have some protection.
That's brilliant, glad the vaccine worked.
Leftbutcameback · 29/07/2021 18:49

Thought I'd come back to say thanks to those who pointed me in the direction of the spike antibody test. It's all done now, pretty easy and given me some reassurance. Happy to provide more details if anyone wants to know.

YarnOver · 29/07/2021 19:19

No I'm CEV and could never be bothered to shield.

Original poster
Gillgardens · 29/07/2021 22:37

No I'm CEV and could never be bothered to shield

Glad you had far more courage than me, and that it worked out well for you. I bothered because I wanted to give myself the very best chance of staying alive for my children and grandchildren.

OP posts:
boon · 29/07/2021 23:43

@leftbutcameback yes please for details on antibody test. My mum is CEV and I want to find out for her.

Leftbutcameback · 30/07/2021 09:00

@boon I used Zoom Doc. About £60, easy to do provided you aren't squeamish. Have a read of their FAQs. Results have lots of caveats but still useful for me

DottyHarmer · 30/07/2021 09:18

The problem with being registered disabled because of being cev is that you would have your life curtailed more than you might wish. There are some people who may indeed never again feel comfortable out and about, but others may decide at some point that they do want to go on holiday, go to a family party, or church or even the shops. Then it would be problematic if they were claiming, eg, disability from work yet were doing other activities where they encountered other people.

And then in the future there might be different levels of alert - so one month or even year there could be high cases, and then a period of very low risk. Not many would want to be stuck at home unnecessarily because they were claiming that they could not leave home due to the risk.