Covid Vaccine and Clinically Vulnerable - LUPUS UK


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Covid Vaccine and Clinically Vulnerable

BeeManShrop profile image

Morning All My wife and myself had our jabs yesterday. As stated by others it was well organised, spotlessly clean and everyone was welcoming and helpful. My only criticism is that my wife is registered as Clinically Extremely Vulnerable (CEV) and is still very ill and in a wheelchair, yet this seemed to be completely disregarded when you go for the jab. We had to queue alongside everyone else and sit and wait our turn. It does not make much sense to me to tell CEV people that they must shield, or isolate themselves, for nearly 12 months but when it comes to the vaccination you are treated the same as the fully fit community. Surely CEV people should be identified and fast tracked through the process to ensure that they are with and around other people for the minimum amount of time thus reducing the probability of catching any infection.

The good news is we had the AstraZeneca jab and had no immediate adverse reactions. Although my wife did have a sleepless night and her aches and pains were somewhat worse than normal. Hopefully this will improve in a couple of days.

It is a considerable relief to know that we are on the road to being protected though - which we are very grateful for.

44 Replies

I had mine yesterday too and did feel uncomfortable sat with everyone else as I'm also cev.there were people there with oxygen etc so I assume they were cev also .the wait was brief and every seat cleaned as someone moved on through the one way system i didnt see anyone without a mask either so hopefully the risk to us is very small.i hope your wife's aches and pain settle soon and she sleeps better tonight. Kind regards xx

Thanks Spanielmadlady for your kind thoughts.

WI'm wondering if it was at one of the main vaccination sites as I'm CEV Shielding and had a completely different experience.

I was called in to a GP run vaccination center and was in and out in 10 minutes. Directed straight to the first reception and paper work done, a doctor was waiting and called me into the room, jab done and onto the next bit double checking that I was the same person who came in and vaccinated and given the information leaflet and vaccination card then straight out no sitting waiting and nowhere near anyone else at all. Infact it was so quick their wasn't time to sit.

I was given the Astrazeneca vaccine and my normal symptoms were a bit rougher than usual the next day but nothing to bad.

The one thing that I have noticed is not as stressed out now and will be looking forward to the second one.

BeeManShrop profile image
BeeManShrop in reply to Boudica1

Yes Boudica1 It was indeed a main vaccination site -- newly opened yesterday. I have to admit that I too was getting very stressed that we were being left till last as the county we are in were at the bottom of the league table last week. It does make me wonder when the government are celebrating 10 million vaccinations and my county are just opening the vaccination centres. Good feeling now though as we have one leg in the lifeboat. Thanks for your interest.

baba profile image
baba in reply to Boudica1

I had similar experience at GP lead center The only time I sat was while having the jab, on a newly wiped chair.

Maverick77 profile image
Maverick77 in reply to Boudica1

Hi Boudica1. I’m so glad all went well with your first jab. I’m still waiting. I’m also glad to hear that u don’t feel as stressed now as that is one of my biggest complaints now. I don’t sleep well and where I used to have nightmares once in a blue moon I have them nearly every night now. Maybe the stress will subside after vaccination. Here’s hoping x

Boudica1 profile image
Boudica1 in reply to Maverick77

Hi Maverick, hopefully you won't have to wait much longer.So sorry that the stress is getting to you, yes it's getting to so many people. I have sleep problems anyway but I'd totally lost my sense of humour and had turned into a bad tempered snappy dragon 🐲.

Now I seem to be almost back to me 🤣😂🤣😂. Maybe they put a bit of happy in with the vaccine. Hopefully this time next year we're be free from the worry or millionaires or better yet both.

Take care 😘💟.

Maverick77 profile image
Maverick77 in reply to Boudica1

Yes Boudica1 I defnitely need a bit of happy. I’m hoping to get my first jab in a few weeks. Stay safe x

I know exactly where you are coming from. I seem to be constantly on the verge of a meltdown with the waiting. Sleep is hard to find and I am sick of being scared of other human beings. The worst thing is the lack of information where I live. People all around me are getting vaccinated - but I can't find out why I haven't been contacted yet. It's driving me potty and I feel very stressed out by it.

Hope yours comes soon!

That is my argument too! I didn’t want to have any special treatment but I’d have thought say 10-11am one day they could have CEV people. I was surrounded today by elderly people who were walking in , few with sticks and one other lady in a wheelchair . My name was being called and I couldn’t attract their attention as I was sitting in a wheelchair . The room was full of people standing at stations waiting to be called through. My thoughts were how many of these people have put a mask on because they HAD to. And are usually taking chances . My neighbours chat to each other literally 2 ft away and see all different visitors , one has his son drop off things yet he’s always out walking around.

Luckily today I was wearing a N99 3m mask and a face visor - annoyed me they take your temp and I had to remove the shield ?? I mean that’s ridiculous! I closed my eyes as I removed it and then opens them when I placed it back.

I know a lot about this virus as I studied virology and tracked this from the Wuhan outbreak , warning people it was coming here. I got scoffed at! Meantime I was storing long life items and some PPE. When the lockdowns hit , I had compost , seeds , paint for garden fence etc me and my partner locked our huge gates & we were like in a dystopian movie - emerging to clap on a Thursday at 8pm.

But to have shielded from February 2020 and then I had to queue - moving up 2m every time the person in front did . I don’t like that! I was literally moving into the area they’d just seconds before vacated. Don’t get me wrong I am so so grateful for my vaccine. But as my consultant says if I get covid I have a 20% chance of surviving it! Makes you extremely nervous to be in a room with 100 other people.

Hi Anthony My thoughts exactly. There must be some better way of vaccinating those of us who have been told they are Clinically Extremely Vulnerable. It makes no sense whatsoever to tell very ill people that they must shield for nearly 12 months and then when it comes to vaccination time to chuck them in with the able bodied who probably have been out and about as normal. That puts the vulnerable at even greater risk.We did not have to stand in a queue we were all on spaced -out chairs but there were at least 50 people in the hall - very scary! We had bought N95 masks specially for the visit - brand new, but we were asked to take them off and change to the little NHS blue ones that do not seem to kit either my wife or myself. I suppose they have to be sure.

Oddly, we were only asked whether we had Covid symptoms and/or a temperature in the last 7 days. We did not have our temperatures checked on site.

It is good to know that I am not alone in having these thoughts. The trouble is we were so relieved to get the jab it does make you wonder whether you are being too critical when the good people on site were clearly doing their best.

I have tried to make a suggestion on the NHS "Contact us - feedback" system -- tried 4 times yesterday and today and got an error message every time to "try again later". I have now sent it to the PALs team in the hope they can follow it through. Thanks for your comment and best of luck.

I a totally agree. I think the staff and volunteers were doing a fantastic job. It was scary how well oiled the machine was! But it amazingly ran like clockwork.

I personally would have refused to take my mask off if I was not asked - some people were given the nhs blue masks to put over their cloth ones, but I want asked . I didn’t enjoy the removing a face visor for a temp check - she did try through the visor but said oh! & my heart jumped as I thought my temp is weird due to my condition - I’m documented as having fluctuating temperature- and was terrified for a second I was going to be refused. As people can be asymptomatic & have no symptoms , it did make me ponder!

As the visor is there to stop virus particle s entering the eyes, I did think this is a waste of time taking off PPE to have a temp check! It was as though as long as a box is ticked then the risk is mitigated & not their concern of you contracted covid through the risk . And although everyone was wearing masks - the surgical blue ones - are not as you say, N95/98/99 which respectively stop either 95% , 98%,99% of virus particles.

Let’s hope they can learn for the second round of vaccines in 12 weeks time.

Tile profile image
Tile in reply to Anthony0912

Fyi They do not have to use your forehead for temp check they can aim it lower at your upper chest.

hello anthony, i completely agree with you, and very impressed with yr brilliant safety measures. i am also very very grateful for the vaccines and all the work , planning and self sacrificing helpers, saving our lives in this incredible global mass act of humanity.

if i may add, none of the indoor vax centres i have seen on MSM have adequate ventilation, which is an essential weapon in our armoury. halls, rooms, surgeries, gyms, bowling centres, churches, cubicles etc, either no windows or closed windows and doors! 10 million people, sitting waiting on a conveyor belt steeped in a covid soup.... i feel like screaming at the tv, for god's sake open the windows and doors, fresh air is our life saver and covid's enemy. common sense surely. staff and public should wrap up and open up and breath even safer air.

secondly, the times i have seen on MSM the vax giver with no gloves on, post vax press a cotton ball on to the person's arm, and the person being told to apply pressure to the cotton wool ball with their naked finger, who may then rub their nose or eye or touch their face and infect themselves with covid! surely every station should have antibac at point of delivery, to safeguard each other in the event of a slip up. one vaxer could have asymptomatic covid, or pick it up from the public they are serving , and then pass it on to the 100 people they are vaxing.

keep on keeping safe, and thankyou for taking the time to help us all, i understand we do not generate max vax potential until a week after second vax in 12 weeks time so when i do get mine it will be back to shielding as cev, till at least may. best wishes and roll on the spring. polly.

Polly very nice to read your reply, you must be psychic! as that’s all I go on about is the need for more ventilation too! I have bought a Philips UVC lamp off amazon - the other half comes in , takes uniform off and puts it in a plastic bin for washing . Then the UVC lamp is switched on, so by time I go to kitchen it’s been sanitised over & above what is needed to kill covid (6 secs!) as we do 15 mins. Then all surfaces are wiped with clinell wipes - that the NHS & ambulance service use .

So the lamp would kill any particles floating off the clothes . I know that they use these UVC lights, in hospitals and train stations etc. They basically have them near the ceilings, and in (or near) the air conditioner units - to kill any viruses and bacteria.

I was thinking, it would have been so easy to have these set up in these centres .

The place I attended , luckily she wiped my arm with an alcohol wipe and jabbed it - I wasn’t given any cotton wool to apply pressure & neither did the vaccinator.

She replaced her glove after she binned my syringe - My only gripe was the fact there was a lot of noise. I think they should have signs up saying please do not talk unless your answering medical questions.

As there were husbands and wives , mother’s & daughters etc chatting away like a day trip! This multiplied by 50 or so people in a hall! Was extremely noisy, & I was thinking these cheap blue surgical masks are not 100% - so there’s definitely virus particles in this air. Actually I did think to myself, sadly there are people here , who WILL get covid - from attending this centre ironically enough .

My neighbour is 83 he’s as fit as a 60 year old and is always on his roof . Yep - his is a 2 story house! He’s a retired steeplejack so not afraid of heights - anyway, he doesn’t wear masks - and the neighbour next to him has been passing sandwiches & tea through the fence , while he’s pottering about making things . Very kind.... but not in a pandemic !!!

Now last week, she had a covid scare- & went for a test. But it’s negative she says. I said yes - but as you are so ill - you still need to isolate - even though the test is negative .as could be a false negative ? No ! I’m negative She replied.

I wasn’t arguing with her. So just nodded.

All this was with me in N98 mask and visor with my garden sprayer full of antiviral solution . She was 60 ft away - now I caught her then speaking to the old chap and hand him tea and foil wrapped sandwiches through the trellis .

Apart from being told not to share food and drink from another household - she’s been ill - and she described it like she was dying, she was that ill with a high temperature & shivers, sore throat and a hacking cough!

Well how many people like him , exposed possibly carrying the virus , attended a vaccination centre? That was why I was 99% safe from covid - but I won’t rest until 14 days have passed as there’s always that 1% chance !

I did think what was the point of putting the face shield on in the car - to then remove it in a room full of people to have my temp checked! As we know the virus enters into eyes as it’s a mucus membrane. That’s why I closed my eyes to lift it off - then opened them once it was back. Now they are not sealed visors so there’s also the small chance of when I was being spoken to by 4/5 different people that particles could circulate under the visor .

I was amazed the amount of people who wasn’t covering their eyes. Especially in a packed queue - then a huge room full of people and staff. The masks are flimsy surgical masks that do not protect you ! Only medical graded N95,98,99 offer proper protection. I know everyone couldn’t prob get access to those masks - but I can see how it’s spread. People were making conversations over and above the medical questions. I didn’t.

I was so thankful and polite but in & out as fast as possible. Was good not to sit there afterwards- we were to to sit in the car and if we felt unwell blast the horn. As they’ve was people in the carpark on duty. I sat there for 25 mins then drove away . Stay safe! 😊

baba profile image
baba in reply to Anthony0912

This sounds horrendous. I saw one other person go into a room before I was called, all vaccinators were in separate rooms. And no queues anywhere.

Im sorry you and your wife had this experience . The vaccination centre i attended in the hospital had a number of rooms with small groups of 3 spaced out for the vaccine . We were taken to a separate area if we were CEV to wait for 15 minutes after the vaccine . If you feel vulnerable I think its worth saying to the staff so that changes can be made. Best wishes, rest up if you can over the weekend.Ps we filled in a questionnaire afterwards about our experience , I don’t know if this happens at every centre.

Thanks Weathervane We certainly did feel "vulnerable" (and that is not a word I like to use). I did raise it as a suggestion to the admin people on site. They were sympathetic but it seemed clear that they thought it was out of their hands. There was no sign of either a suggestion box or complaints/compliment system and since I have discovered that there is no way of contacting those responsible for the design of centres -- very well hidden clearly they do not want to be contacted by members of the public "their customers". Thanks for your feedback.

I hope the set up is better for your second injection .

Thanks weathervane -- With any luck!! That will be at the end of April. --- Although, my main concern is the millions of others who have yet to have their first jab. Hopefully, I can eventually find whoever is responsible to give them some much needed feedback.

I had mine yesterday at the local surgery. It was a special session for shielding patients and very well organised. No queues and a one way system in place. Staff made sure your way in and out was clear before you could go and then you were advised to sit in your own car for fifteen minutes rather than wait in the surgery with others. They had really thought it through.

Thanks Barbara Isn't it interesting how different systems have evolved, to effectively do the same job, with some much better than others. Hopefully, we could take all of these different ideas and try to get the best adopted across the country. There are still many millions to be vaccinated so hopefully they will benefit. Thanks again.

baba profile image
baba in reply to Barbara17

Some people don't have a car

BeeManShrop profile image
BeeManShrop in reply to baba

Thanks baba That is very true. In our case I saw no provision at all for people to wait out their 15 minutes undercover if they did not have a car. Although there was a shuttle bus service laid on from the town centre.

Barbara17 profile image
Barbara17 in reply to baba

I was told if I was walking it was ok simply to walk right away!

good morning beeman,

plse excuse lower case, agony pmr shoulder neck pain to type... how blessed yr wife is to have u 2 care 4 her.

I totally agree with your valid concerns. and we cev have 2 go back into shielding as not max protected till may, one week after 2nd dose.

if i may add, none of the indoor vax centres i have seen on MSM have adequate ventilation, which is an essential weapon in our armoury. halls, rooms, surgeries, gyms, bowling centres, churches, cubicles etc, either no windows or closed windows and doors! 10 million people, sitting waiting on a conveyor belt steeped in a covid soup.... i feel like screaming at the tv, for god's sake open the windows and doors, fresh air is our life saver and covid's enemy. common sense surely. staff and public should wrap up and open up and breath even safer air.

secondly, the times i have seen on MSM the vax giver with no gloves on, press a cotton ball or to the person's arm, and the person being told to apply pressure to the cotton wool ball with their gloveless finger, who may then rub their nose or eye or touch their face and infect themselves with covid! surely every station should have antibac, one vaxer could have asymptomatic covid, or pick it up from the public they are serving , and then pass it on to the 100 people they are vaxing.

i am so happy you are both home safe and side affects been mild. i hope your common sense comments about cev being rightly protected during vax will be heard. do keep on keeping safe and thank you so much for taking the time to post your concerns. best wishes polly.

Thanks Polly Good to hear from you and reassuring to know that it is not just me on an orange-box. Sorry to hear you are in pain -my wife is too - but that is normal- arms, hands and shoulders at present. When we ring the helpdesk or the GP they always use the same mantra "how many paracetamol have you taken" followed by "you can take 8 in a day you know". They do not seem to understand that we do not want to temporarily kill the pain or fill my wife up with painkillers. What we want is the root cause of the pain to be fixed.I agree entirely that there is a need for fresh air. The bowling centre we attended was very large and airy -- I assume it has air purifiers of some sort -- all those sweaty bowlers!! It was the first day the site had been open so hopefully they will improve as time goes on. Thanks again.

yr both doing a brilliant job under impossibly scary circumstances, i cling on to the fact that pmr is temporary and this too will pass as will the nightmare of covid, its just managing it as safely and as positively as we can together along the way. bless you for your helpful comments, spring is on her way and will help your good lady wife and yourself, hope is on the horizon, best wishes and always have the best day you can, polly.

Nice thought -- made me feel much better -- thanks.

I am so very sorry that you and your wife were put into such a stressful situation. It makes no sense to me at all. It just seems that in some areas it has not been thought through. I remarked to my husband when we were watching vaccination centres on the news that those vaccinating were not wearing gloves, were touching the patients arm with bare hands before taking hold of cotton wool and tape and pressing it down. The cotton wool was in a pile that they touched with their bare hands potentially they could have infected them when they did the next person. There needs to be a national standard surely? I do hope that for your second vaccination things will improve for you and your wife xx

Hi Cecily Sorry -- I just noticed that I have not replied to you. It does seem that all vax centre staff need to be better trained. Especially, regarding CEV, what it means, & that those registered are very ill/vulnerable and highly likely to catch infection -- any infection - not just Covid. If it is Covid then they will only have a <20% chance of surviving it. In my wife's case she has already been told by a hospital consultant that she is so weak that the ICU would not even accept her. Similarly, Vax centre staff need to be specially trained on carrying out the injections and the procedures that MUST be followed re hand cleanliness.I gave blood for years and the nurses had special little scrubbers and they kept scrubbing for about 30seconds, using a stop watch to time the duration of the disinfection process. Odd when it comes to a Covid vax. and the different procedures are clearly apparent - anticeptic swab or no swab at all, gloves and no gloves, cotton swabs and/or plasters or non of either. Clearly, there is no standardisation and hence some must be less than the best medical procedure. There can only be one best practice.

Similarly some centres take temperatures at the door -- good practice!! However, at our centre there was no temp check and we were only asked verbally whether we had had Covid symptoms and/or high temp at the admin booth. By that time we had been sitting alongside of others for over 30 minutes-- plenty of time to infect many others.

Thanks for your comments, hope in Little England you have had your jabs by now. Big Cwtches (English ones) from Shropshire. XX

I agree with all you say. My own experiences at my surgery have been very good in terms of Covid procedures. When I had an active cough ( asthma) I was seen in an isolation room by a GP in full PPE. As for the vaccine apparently I am not considered “ sick” or vulnerable enough to either shield or get the vaccine until other obese people get it. It beggars belief as none of my Consultants will see me at the hospital. I have not had an appointment in person since 2019. So I will continue shielding under my own damned guidelines until I do get my vaccine xx

That's the spirit Cecily. You know yourself a damned site better than the medics do. Keep safe!!

Thank you so much xx

Totally agree, I have been strictly shielding with my hubby for over a year now, nobody in house, nobody out, and yet I had to go to a mass vaccination centre with about 150 people, queue outside on my mobility scooter for 10 minutes and then sit in a room with all those people, scared me like hell, we should have been prioritised or had jab at home!!! x

Thanks Poshcards Good to know it was not just me. Stay safe and have a good weekend.

You too, not been well with it all, but symptoms are lessening, thank goodness, brighter times ahead we hope, take care both of you xx

I'm also CEV and the vaccination centre was packed! Apparently, they combined time slots with various GP surgeries within the area. Literally, people almost sitting on top of one another. From what I've observed, people were turning up earlier than their allocated time and due to their mobility issues, they (the volunteers) were allowing them to join the queue. I suppose, in hindsight, I would have done the same or more than likely even ask for guidance from Management but it was manic!

Furthermore, they gave me a hard time because I didn't look - from what I believe - their preconceived idea of what a CEV person should look like. It was only when I had my brief one to one with a medical professional, who enquired why I was deemed as being CEV, that they took me seriously. I've tried to put it to the back of my mind, to be honest because it was so awful and upsetting.

However, despite what I've written, the administration of the vaccine was fine.

Foggyme profile image
Foggyme in reply to Amakura

Sorry you had such a bad experience Amakura. The vaccination hub I attended was the same - packed! I was actually told off for trying to keep my distance and told to move CLOSER to someone else (I politely declined)!

There didn't appear to be any recognition that social distancing whilst waiting in a very crowded space (with no ventilation) was not enough protection (or appropriate) for those who are CEV and shielding!

Like you, I got the vaccination okay. But I'll be asking if its possible to get the next one via my GP (had the AZ and I understand that there are plans to 'eventually' distribute these to individual GP surgeries, so fingers crossed). At least there they understand the finer art of protecting the CEV!

I can only imagine how you must have felt being challenged as to your CEV status! So sorry you had to go through that.

At least we're 'done' - with the first one!

Hope you have a better experience next time.

Big hugs 😘xx

BeeManShrop profile image
BeeManShrop in reply to Foggyme

Hi Foggyme Please see reply to Amakura above -- best wishes!!

Foggyme profile image
Foggyme in reply to BeeManShrop

Thanks BeeManShrop. I'll certainly be sending communications about care of the CEV during the vaccination process!

As you say, that the first one gratefully received. Stay safe and keep well x

BeeManShrop profile image
BeeManShrop in reply to Amakura

Hi Amakura and Foggyme Sorry to hear that you both had a worse experience than we did. There were not an extreme number of other people in our case -- but enough to make us worried and very uncomfortable to sit alongside, even with spacing, for about 30 minutes. Also my wife was in a wheelchair so it should have been clearer that there could be a problem. Although, para-Olympians can also be in wheelchairs and very fit indeed. Even the words "Clinically Extremely Vulnerable" is not really understood by most of the population. I do realise that there are many illnesses e.g. Crones Disease where the person looks perfectly well but an infection could cause a flare-up which could last 6 months or more.You would have thought that the people planning or designing the vaccination process would have thought about CEV people and made appropriate allowances.

Anyway it is over now for all of us - 1/2 the job is done and that is a relief - not having to wait.

My wife before she was wheelchair bound had to use a stick which she always said made a vast difference to the way people behaved towards her. Perhaps CEVs should have a badge or stick to carry??

It would help of course if we all complained to whoever the authority is responsible for these very poor procedures and processes - the more complaints the better.

Glad you've both had it without any ill effects. I got the phone call this morning to go for my first dose on Monday and was surprised to be told that it was happening in the big hall, not the doctor's surgery where we'd been told the CEV would be vaccinated to avoid 'the crowds' so I understand your concerns. Have to admit to being nervous/anxious. That won't stop me getting it, of course, but with my lupus still not being controlled and frequently surprising me with with one thing or another I can't help but worry over what effect the jab might have. Now I'm worrying about the number of people who I will encounter too! I need to stop stressing, that won't help. Fingers crossed it will all be fine, I'm sure it will 🤞

Hi Whippet-lady Good luck for tomorrow. Try not to get too stressed but do use the opportunity to check whether CEV are being treated any differently to the able bodied. If not please complain. That is the only way we will make the authorities recognise our issues.Thanks for your reply. Concentrate on the relief it will be once you have had the jab, at least some of the worry will be gone. All the best.

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