CEV - Kicked in the Teeth a month ago now Wr... - Vasculitis UK

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CEV - Kicked in the Teeth a month ago now Written off

Investigator1 profile image
24 Replies

As you know about 3 weeks ago I wrote a passionate post about us the CEV or should I say the forgotten community. It was about the worrying situation of removing masks but now we here no isolation if someone is infected. Absolute Madness! And for us I am afraid the future gets worse, we have done so well, put our lives on hold and now totally discarded. We have the invisible disability and nobody cares.

I will tell you all this. I have been a H&S Professional for 35 years and if a workplace has CEV workers they have a duty of care to protect them. So if they knowingly allow another worker who is infected into the workplace who infects an individual who is CEV they can be prosecuted. In addition to that if a person who knows they are infected knowingly enters a workplace and knowingly comes into contact with somebody they know is CEV they also can be prosecuted. Therefore it’s up to Senior Management to inform and instruct.

If only this could be applied outside the workplace.

Everybody’s thoughts please. How do you feel?

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Investigator1 profile image
Investigator1
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24 Replies
Nadine99 profile image
Nadine99

What do you expect this or any other government do? Confine everyone? Lock all the CEV's away? We have to move on with our lives, take a little risk whilst being as cautious as possible. We can continue to follow our own rules and have to hope for a little sense from those healthy people out there who can't see the hidden illnesses.

Investigator1 profile image
Investigator1 in reply toNadine99

Nadine, what I expect is what is sensible, and isolating is sensible, mask wearing is sensible. I have moved on, my wife changed her job, I do take calculated risk to enjoy my life but this is crazy. I ask anybody not consulting SAGE is that rational? Would anybody not consult a doctor if they thought there was any medical risk, I know I would.

vivdunstan profile image
vivdunstanVolunteer

Stopping isolation is horrific news for the immunosuppressed. The virus will run rampant. I live in Scotland and we are not planning this change. But I am looking with horror at the changes in England.

May7 profile image
May7

I too, was absolutely horrified at the news. I read that SAGE wasn't consulted, and the scientists think that cancelling the isolation period when a person tests positive is TOO SOON! Of course we all want to go back to some kind of normality, but that will only be delayed by this reckless action, driven not by science, but by populist politics to distract from Johnson's disregard for the law and common decency. And it's not just us who are immunosuppressed and vulnerable in many ways. Nobody knows who will get long Covid next, and how long it will last. After the last disastrous decision to allow non mask wearing, I bought FFP2 masks to go shopping in. While protecting me more, I find it difficult to breathe with one on, because vasculitis damaged my lungs, amongst other things, so I suffer the shopping trip as quickly as I can, before beating a hasty retreat to the car. Now we find that another safety barrier is removed, and for no good reason. Words can't describe how I feel. I don't intend to take risks with my life, so I can't move on with life as I knew it, for quite some time to come .

Nadine99 profile image
Nadine99 in reply toMay7

Shopping, like in a shop? Haven't done that for 2 years. Everything is done online for us.

May7 profile image
May7 in reply toNadine99

Yes, in a shop. I had spent a large chunk of the Covid period shielding, and using online deliveries only, before vaccinations and mandatory mask wearing opened up a more normal life for me. I have been able to come off the computer and go into a real shop, browsing and choosing things as before, and enjoying going into my favourite local supermarket that doesn't do online deliveries. Now the government has made this has become more difficult, and I am naturally averse to becoming a hermit, which literally, and I mean literally, has been depressing.

Investigator1 profile image
Investigator1 in reply toMay7

I am with you all. And I fully get what May7 has said, we did start getting back to “our” normal. Unfortunately there will be recklessness like this to come if the PM stays put. And I really do think that people who don’t understand our situation and say things like “they need to stay at home” are ignorant about our conditions because they choose to be, it doesn’t affect them so why bother. Nobody would stop a person with a disability from having their rights. Why us?

citygirl1234 profile image
citygirl1234

The idea that someone could test positive and still come into work or go out and about is frankly horrifying. Of course, I’m sure there is a minority of people who have probably been doing that already, but it’s baffling and alarmist to make this kind of statement out of the blue. I thought we were finally making some progress on reducing presenteeism in the workplace. My employer is operating on an honesty system - if you test positive you are supposed to report it to HR but you have to trawl through the intranet to find the right form to do so.

Even pre announcement, I’ve already had a clash of opinions with one of my colleagues who claims it is completely unnecessary for our office to only use “every other desk” and masks as part of the social distancing policy, and that there is “no risk” to going back to pre pandemic office working habits. We agree to disagree.

I know changes are coming as I think most of us don’t want to be hermits for the rest of our lives, but I think this is too fast for what the majority of CEV people and their families are comfortable with and this doesn’t appear to be an evidence based decision.

Kdales32 profile image
Kdales32

If you want to wear a mask and isolate go ahead? Doesn’t your mask work? Enough already

May7 profile image
May7 in reply toKdales32

This forum is for people to support each other in a kind and friendly way.

Investigator1 profile image
Investigator1 in reply toMay7

Absolutely May7, we help not criticise,we don’t that!

EGPAGuy profile image
EGPAGuy

Totally agree. Recipe for disaster. I don't expect the world to stop on my behalf but no isolation or masks? Let's face it you would stay at home with a bad cold so as not to spread it in the office for example. Truly staggered. The Japanese have for years worn masks..not for their benefit but as a courtesy to others whilst sick with something infectious like a cold. Lets hope our culture develops along the same lines.

Grizzly-bear profile image
Grizzly-bear

Presenteeism was a huge problem before covid and now they’re essentially condoning it when I was hoping covid would be the point where it stopped. People compare to flu and say “would you expect someone with flu to stay home or away from people?” YES! I absolutely would expect someone with flu to stay away from others. A lot of people die of pneumonia every year. Same with other infectious viruses/diseases, I’d expect people who were knowingly infectious to stay away from others and wear a mask if they need to go out.

Pre covid I used to travel to Vietnam a lot for work and people were always wearing masks then when sick, including children. It’s a courtesy that’s never existed in the U.K. In Vietnam you’re taught from a young age to care for community and the vulnerable so no one sees masks as a burden, it’s just like putting on your socks.

Grizzly-bear profile image
Grizzly-bear in reply toGrizzly-bear

People also say that the deaths aren’t bad atm. Wrong! They are! But also the deaths would be a lot higher if most CEV people weren’t living mostly sheltered lives.

And people assume I say this stuff because I relish restrictions or something. I want a normal life where I can see friends and family without worry. I’m 32 and been confined to home. And for the people that say I should take risks - if my 11 year old niece gave me covid and I died how do you think she’d feel? I can’t do that to her. Doesn’t matter how much you explain it wouldn’t be her fault she’d feel responsible and I don’t want my family to have that responsibility over potentially harming me, so I distance myself.

Rage!

Investigator1 profile image
Investigator1 in reply toGrizzly-bear

And that’s why we are different. Most of us care like you.

eh66 profile image
eh66

Sadly it appears to be a political decision to be the first country to claim to have "beaten" the virus. It appears Chris Whitty and co were caught unawares by the decision, and is there fore hardly science based. This was corroborated by other independent scientists The health and safety aspect is an interesting that the UK government will dodge or change the regulations. So much will depend on how individual employers value their staff.I too live in Scotland where there is currently a far better duty of care.

Main1234 profile image
Main1234

I think the next step will be stopping free LF tests then nobody will know if they have Covid or not. The majority of people I know who have had the Delta variant have said it felt like a heavy cold and only knew they had Covid when they did a LF!I think people will just stop testing themselves tbh.

It feels we as CV are left to “sort ourselves out” we have been extremely careful , wear FFP2 masks and don’t have to use public transport. We are tired of assessing everywhere we go and planning to go at “quiet times “

Our visitors will do a LF before visiting but not sure they would be happy to pay for these.

People who are not paid when off work will go in regardless ( maybe through necessity).

Think unless you are CEV you can not comprehend the changes in your life over the last 2 years .

Antivirals are now hopefully available for all that need them but I am not sure what to expect over the next few months and dread the winter again.

Stay safe everyone we are in for a bumpy ride.

Investigator1 profile image
Investigator1

Hi Main1234. Some really good points there. I have been the first one to moan about people panic buying in supermarkets but I have to admit we are storing up our allocations of LF tests. I don’t know how true it is but a nurse at the local practice said she had heard (more hearsay sorry) that those registered CEV will not have to pay and those who do pay it will be £7.50 for 7 tests.

Main1234 profile image
Main1234 in reply toInvestigator1

We also have a large supply

Tbrz profile image
Tbrz

Totally forgot about, or is the policy to try and kill us all off as it is our fault we are Ill! I have virtually been house bound for 2 years and it looks like, unless I want to play fast and loose with my life, this will continue. We should also remember that immunity wanes over time, from 12 weeks and if you are on certain medications then this will also affect your immune response, mine is pretty low even after 4 vaccines. What I object to is this is not a decision made on scientific advise, but on someone trying to save his political skin and this will have consequences on people, especially those in the CEV category. What really annoys me are people saying I want to get back to normal, as if this is a fixed immovable thing, it is something which changes over time - it used to be normal to send children up chimney’s, but we have progressed from that. Also the ones who shout loudly about wanting to get back to normal, really how much has their life really changed, probably not a lot, they’ve just bought into the narrative, walk 2 years in my shoes and then you might have something to moan about. Unfortunately, we have been dismissed as a group and shrugged off as well you’ll die anyway. I feel equally anxious and upset about the future.

Investigator1 profile image
Investigator1

Well said mate. Fully agree those that shot loudest are the ones who have totally ignored Government advise. I have a 30 something lives close to me and she has broken every rule and guideline going, all she has to say is “we have to live with it but you need to be careful” thanks for that!

Galaxy2 profile image
Galaxy2

I like Main1234 has said think many people will just not test in time and be going out and about not knowing whether they have a cold or covid.

I just don’t think people generally have any understanding (unless it affects them directly) what it is like to be vulnerable and the impact it’s had on our lives and our families lives for the last 2 years.

It’s all very well for the government to keep justifying their actions on the success of the vaccine program but what about those of us who haven’t had a good response to their vaccines.

I’ve been hoping for so long for light at the end of the tunnel but it’s definitely not there yet!

Investigator1 profile image
Investigator1

Oh Jenny how true you are! I have worked with disabled people, ethnic groups and underprivileged groups and always tried to see their perspective and learnt a lot along the way and taught myself to be more understanding and tolerant. But I feel like there’s no justice for us.

AndrewT profile image
AndrewT

Have you seen/ Read My 'Post' on Continue Mask Wearing? It was a couple of Days ago now. DO have a read and then by all means, reply to me Investigator1. In the mean time

Take Care

AndrewT

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