I wrote to my mp Rishi Sunak asking him to discuss all the matters brought up here with the health secretary .
I feel as our representatives NRAS.org.uk should be discussing these long term effects and plans on the lives of immunospupressed people with the government.
Specifically regarding our risk when plan B is dropped, the new "shield" vaccines when can we get them , supermarkets to keep data on CEV , how we actually manage to get back to large gatherings or are we expected to risk our lives when we do that. Continuation of lateral flow testing for CEV so I can see my family. Also media asking people to respect those that have to wear masks etc and no I don't want a necklace to point me out!, I would also value knowing specifically how effective are antiviral tablets against dying from covid.
I think this us an urgent matter and if many if us could write to our MPs and nras.org.uk could intervene on our behalf we might get some chance of a life , without risking it .
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allanah
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Well done allanah. I feel confident NRAS will take this up with the powers that be but it won't hurt to send them a message anyway. I will also write to my MP, Damian Hinds.
Well he always replies to every letter I've sent and still even through the pandemic dealt with smaller issues , so fingers crossed he will support us with the health secretary
I’m a little confused as I’m not sure what the expectations are of writing to your MP? We can’t expect the world to revolve around us and with number of cases and deaths falling, I don’t see how the wider population should have to continue wearing masks etc...when the possibility of being ill when catching covid now is very low.
Businesses are crippled by these regulations. People testing positive but perfectly well and staying away from work. I realise it’s to reduce the spread, but most people have very few symptoms now.
Even in my tiny business, I have three people isolating without symptoms which puts huge pressure on everyone else who are almost at breaking point. My clients are crippled with last minute cancellations and clinics are half empty. That’s just a tiny microcosm of a wider situation. It has to end sometime and with the rates so low in hospitals, it does appear the vaccinations are working and the strain weakening. I think we have to do what’s right for us as individuals now.
Yes we are going to have to choose how to protect ourselves…..& as long as we are sensible there is no longer such pressure …as long as we all have our vaccinations we should be able to get back to a semblance of normality,& will hopefully be able to plan a lovely summer holiday this year!
I think the point is AC that even though we have vaccines our immune deleting infusions that a lot of us have , lower our immunity to illnesses and especially to a virulent virus, or even take it away and Im also thinking also of people with blood cancers etc.
There seems to be no plan to protect them if they work or us going to a shop. It's all out and if you die it saves us PIP money.
Feels underthought and unfair to thise affected. I still can't see any numbers on how good the antivirals are at protecting immunisupressed people from covid severe infection and that scares md. The simple sums of 70% protection if both wear a mask , dropping to 30% if it's only me wearing the mask .... ! So that does not make ne feel particularly safe . Comparing it to flu from a health secretary was actually laughable and again diary, showing he's happy to accept a few thousand of us dying of covid .
But I so want to be able yo do normal things but feel safe
I’m a polite-considerate-kind-kinda gal .... I intend to stay that way but would really like Allanah’s thread not to be spoiled and her good points and ideas and encouragement to others to be lost in all of this. I’m in exactly in the same place doing exactly the same thing as I was 24 hours ago. Typing to you!!! What madness this all is. I’d really like not to exchange with you again, so let’s say we disagree on shielding. I have only stayed here today to try support this thread positively. I do not like to see such discord. Best of luck to you but that’s all now.
You did seem come across as more interested in the economy and your business side of things not the vunerable people side of things. While I agree and understand that we have to live our lives we also still need to be careful of Covid. We are still exposed with an immune system less than most others . Yes covid cases going down but while it's still around the possibility of catching covid does not diminish. More people than us think that mask wearing should continue for a a little time longer when all other restrictions are stopped after all look what happened when the mandatory wearing of masks stopped last time. Cases rose and Omicron appeared and we are all back wearing masks. Even the medical advisors and who scientists say that keeping the keeping mask wearing mandatory a while longer is needed. So yes writing to our MPs is a good idea . We do seem to be the forgotten people in all of this.
Of course I'm worried about my business. I'm responsible for 18 peoples mortgages. What happens to them. That has to be my absolute priority to protect their jobs, their families and their life. To say otherwise would be ridiculous.
I’m just pleased to be in Scotland where decisions are closer to the scientific advice. There’s still too many people very Sick with this. And long covid is terribly debilitating
Exactly Cathie and well said , Long Covid is a massive issue also, for some it's not just get Covid once and done..some of the long Covid Clinics in England are closing as they have too many referrals. My daughter who had Covid last July , still has no proper sense of smell and smells nail varnish constantly which freaked her at first, it's either easing or she has got used to..but not very pleasant, but that is minor compared to what some people are dealing with.
I've been in contact with the son of a friend who has long covid. There's useful solidarity between those of us with chronic fatigue, brain fog, regular flares and people with long covid. Many of them are younger and shared understanding could be mutually beneficial.
Ooh Hally , if I were PM , !!!! I'd give us all access to free movies and pop corn on demand in our own private showing with covid killing ventilation and lights .Telephone calls on demand from my favourite pop stars who of course would sing to me, and parties in Downing Street, ooh I think they do that already maybe???? 🤣🤣🤣
I think writing to the government who are making the changes and protecting uts citizens us indeed a sensible thing to do. They like you maybe are not immunosuppressed so would not be in the clinically extremely vulnerable ( to death from covid says 2 ) virus. In our front omicron can still kill!
I am , so I shielded like the government said, stayed in a separate room to my husband, like the government said, got shopping deliveries , like the government said , so why oh why would I not ask them , OK what now, what do you have in place for my safety going out two years later.
All you non suppressed have been out and about more than we have so I feel fully justified as any minority group to ask , why are the pcr and satirical tests not eaily available, what's the statistics on do they work, why can't our minority group have the " shield " vavmccine , why am I going to work scared as no one will continue to protect me and in fact put me down and laugh at my situation.
Your business and indeed all my families businesses are now open , you can have your un immunisupressed customers , but we can't come into enclosed spaces whilst you dont wear masks.
So please actually spare a thought and respect for others situation and hope you don't need them in the future
You’re making a broad assumption there. I’m very immunocompromised with both Lupus and RA and CEV and I’m not keen on being patronised and spoken to like I’m some kind of idiot.
At least you had your husband. Try being completely alone for a year and having to fend for yourself. Yes, I’m cross with your comment as you have no idea about me at all and the struggle it’s been to sort myself out and also keep a roof over my head and not lose everything and over the head of my employees for two years and support the 200 plus clinic clients that have been in despair. Some have had to liquidate and have lost everything. Oh yes, forgot to add, my mother also died from Covid last January.
Most of my team are also high risk as they have Crohns, cancer, RA and fibro as my ethos is to employ people with chronic conditions that are highly skilled and otherwise are often left on the scrap heap. Who’s going to pay them whilst they’re in isolation? Sick pay won’t pay the bills and neither will our clients as they’re not being paid either due to the high level of cancellations. No one can live on hot air.
I’m very much for protecting the most vulnerable in society and do so, but, with the vaccines and the antivirals in place now, surely it’s time to move on as we cannot expect the rest of the population to adhere to regulations when the risk to them is almost non existent. We have to do what’s best for us and risk assess situations. I wouldn’t go to a large event, but I do meet friends as they always test before meeting up.
Please don’t assume I’m low risk because of my opinion about this. I’m the opposite and after two spike protein tests, have very limited antibodies from the vaccine too. But, I understand that I’m a tiny cog in a very large population that does not revolve around me 🤷🏼♀️
You have a good take on the situation HKG…….your responsible attitude for your staff is to be admired.We with RA & other auto immune diseases are in fact extremely fortunate to be living in this country during this pandemic & on the whole we have been well looked after …for which I am sure the majority of us are very grateful. But now we have to take the rough with the smooth & decide how we individually will deal with the position we find ourselves in….the Government is not our NN.
We must remember too…there are many unfortunate people with multiple illnesses to deal with who have no NHS to rely on…..even depleted & demoralised as it is….the NHS doctors & nurses have shown we-do still have a health service to be proud of.
Hi just to add to the discussion my husband has RA and CLL (chronic blood cancer) plus pulmonary issues. He has been on the CEV list since the beginning. Last summer we discussed taking risks, keeping safe and mental health issues. He decided to go out occassionally, taking all precautions. He was fine until this January when he caught Covid. Fortunately he was already off methotrexate because he had hepatitis infection in October.
He had been contacted about the new system and sent a priority PCR test. He had done a lateral flow which showed positive. I took the PCR test to the post box which dealt with priority tests. It comes in a red box and the post office has to deliver it swiftly. Next day positive test result came back. He registered the result as per the instructions sent and the next day received a phone call from the doctor at the local Covid hub. He was offered to go for daily infusions at the hospital, but opted for the oral antiviral medication at home, which was couriered to him the same day.
You need to start the antivirals within 5 days of a positive PCR test. I was concerned about him as his cough was getting worse. He was phoned the next day, and the next by the doctor to see how he was. Within 36 hours he was much better and the antiviral treatment worked.
It has given him confidence that there is an alternative. Having said that I see no reason not to keep mandotary mask wearing and social distancing in public places.
Antivirals are still new in this country and their effectiveness is being monitored.
I feel for those running business, families on low incomes, and those with mental health issues. The impact of the pandemic is huge on so many people. All the best to you all.
Wow , I'm so glad he got better with the drugs that's reassuring . I also feel for businesses, my kids all are in event management and nightclubs so they have had a hard time but started on line businesses with thankfully are doing well and they are back in the clubs. Two caught covid early on in the clubs before we knew about it too much and unfortunately my hubbie has serious long covid which has affected his heart and circulation. He's still seeing cardiologist so it's worrying. I also lost 4 close friends aged 34 yrs pre vaccines to covid its been heart breaking. So yes I would love to know my antibody level , that your experience either antivirals will be country wide and that maybe we can get further more effective long term shield vaccines. And personally I would prefer respectful mask wearing eg on buses and trains.
Neither Allanah nor Neonkittie have suggested the world should revolve around the 3.7 million people who are immune suppressed through illness or medication. We have “shielded” ourselves and “taken extreme care” as advised for nearly two years and will probably have to continue. What we are asking is that we are not abandoned or forgotten when the majority, who do not live in fear of serious illness or death as some of us do, have been out and about socialising, travelling, and enjoying events and entertainment.
Allanah has listed some specific things that she feels could be done to help, including making available pre-exposure prophylaxis in the UK, which is already available in the USA for example. I feel sure that NRAS will be working behind the scenes in our best interests but in writing to our local MP it also makes our concern about our situation more widely known.
I do appreciate it’s tough for small businesses such as yours when infected staff have to isolate but surely it reassures the other employees and helps to prevent them and you from becoming infected and maybe becoming very ill. Some of them will have vulnerable family and friends to whom they would not wish to pass Covid. On the other hand, for someone immune suppressed and/or with underlying health issues rendering them vulnerable, how frightening it must be now to return to a place of work where masks are not worn, distancing may not be possible and ventilation is poor.
Many of the government’s scientific advisers have openly expressed their concern that plan B restrictions are being lifted too soon and that the reasoning behind them may be more politically motivated than in the best interests of the population.
Please try to understand how many of us are feeling now and that whilst “living with Covid” may seem attractive to some, for many of us the prospect is deeply worrying and we fear it could be almost no life at all.
Thank you. Midweek I asked Vicky Foxcroft specifics re monoclonal antibody injections as was discussed on the ZOE seminar in the autumn. I don’t see how people can’t see how much harder it is for highest risk people now. I do not expect anyone to change their ways for me. Just replied to you and Allanah as did not wish to seem rude then I’m away after this evening. xx
I'm among those concerned about restrictions lifting so quickly and dramatically, particularly when case numbers and deaths are still at such high levels - cases will be substantially higher than they appear now that follow up PCRs aren't used following asymptomatic LFTs and deaths aren't yet reducing. My personal view is that plan B was dropped primarily for political rather than public health reasons.
That's not to say I don't appreciate your points as well, and certainly don't expect the "world to revolve around us". I just think that a more carefully considered middle ground could have been (and could still be) identified as we transition out of the pandemic.
For example, if medical science indicates there's a case for cutting isolation times, then that would hopefully relieve a massive strain on businesses like yours, while continuing to wear masks in enclosed spaces - for those who are able to - would make public places like shops and transport feel far safer and therefore accessible to people like me. It would also be helpful to have specific guidelines for employers around supporting immunosuppressed staff at risk of severe disease, such as advising that working from home should continue where possible / requested by the staff member - that kind of thing. This sort of measure wouldn't restrict the wider population at all, but would go a long way towards showing that the minority of us who have good reason to feel more vulnerable due to these changes have also been considered.
Just my tuppence worth. No solution is ever going to suit everyone is it.
Exactly this..100% agree with you. The HSE does have some guidance for Employers that are CEV, the page was last updated on 19/1 but nothing on the actual Covid Gov.uk page yet which was my concern. But it may change as restrictions ease. hse.gov.uk/coronavirus/work...
Very well put. I do feel that some restrictions are being lifted too early and I feel very vulnerable about being in work but can’t work from home. But I agree that if there are ways to support the vulnerable whilst letting the majority of people get back to a more normal situation they should be given greater focus. Not all those who are CEV and advised ti shield can carry on doing that long term as they depend on their salaries to pay bills. A lot of people’s livelihoods depend on their businesses being able to operate more normally.
I'm totally in agreement with you. We need to take responsibility for ourselves. I work in retail, a team of 8. We had 2 off with covid, one off after an operation,one pregnant, myself just back fully now after an operation and then fracturing my pelvis and one on reduced hours due to back problems. All companies have covid risk policies and it's not the government's responsibility for our health. This is something we are stuck with for now and we can't shut ourselves away,I refuse to. We've even booked a holiday for September. Time to stop expecting special treatment and get on with living. X
Oh my! You've been in the wars. Hope you're feeling much better now. I understand that people are anxious. It concerns me that staying in can become a habit and fear can take over. Don't get me wrong, I have my moments and friends have to drag me kicking and screaming out the door.
Holidays! Yes! We all need something to look forward to don't we 🙂
Thank you. The fractures were caused by osteoporosis. We also lost my MIL to covid, care home and had to say goodbye via video call and my SIL to cancer 20 days after diagnosis due to not being seen so definitely not shutting myself away. My partner also got diagnosed with Myasthenia Gravis a rare neurological autoimmune illness and we will keep living and working for us xx
There has to be a balance…..it is not good for one’s state of mind to stay home & worry 24/7.In fact if you check the records ….some strains of Influenza …particularly when the vaccine has not captured the right virus…have been very serious,
As somebody very old, on one of the supposedly most feared Biologics if one catches Covid, I am not unaware the chance of contracting the virus ……could be very serious for me, but my rheumatologist agrees….that as long as I don’t carouse in night clubs, or socialise in the homes of unvaccinated people …or any of the other publicised No No’s…..my mental state will be far healthier if I continue to live my normal life…..rather than staying home ‘just in case’
.
Yes, the people who have to use public transport in order to earn their living do have a lot to contend with….but all the general public can’t be expected to
wear continue to wear masks everywhere & not go to work to protect a tiny section of the community…..although from people I know who do commute they do say most people are wearing masks.
Being sensible & understanding how we can protect ourselves seems the right way to go forward…& we all as individuals have to choose how we are going to do that.
What respect do you feel entitled to? Who is ridiculing who?What is it you actually want to see happen? How do you want respect shown?Do you want Shielding back…or Supermarket home delivery reinstated?
We must remember all the people in retail ….& other areas….who have worked hard all through the pandemic …to help protect us & sadly if many more businesses fail….we shall all suffer & some who have jobs will lose them.
I find my younger friends are most careful not to come around without calling first & until I say I’m OK with them removing their masks, they keep them on.
There is going to be a happy medium for everyone…& we really must remain optimistic….& not get too down by all the nonsense the media feed us.
Gosh!! Question 1 answer the posts I see on Facebook, in newspapers and the anti vaccine groups around the town I will feel disrespected when they ask about masks and why I don't want to be indoors, I've already had it in a couple of cafes.
Question 2 , I would like as I stated above snd lola said the antivirals to be easy to get and to know how effective they are . The new USA shield vaccines to be available here
Question 3 yes I cannot see why immunosuppressed cannot remain of duoermatket priority lists if they wish
Question 4 I never stated shops should close , I said if immunosuppressed wish to work from home if its possible I think they should be allowed.
Question 5 I read evidenced based research not tv , so I feel I'm justified speaking to my Government about my evidence based concerns
Well you certainly have quite a list there A…….& I fear most of your list will not be addressed. I honestly believe the majority of people in the street have no idea what immunosuppressed means….people link disability to something they can see…like those who criticise someone with a Blue Badge when they appear to be able to walk perfectly fine.….
In fact supermarkets I have never used have sent me emails assuring me I can get priority shopping…so unless they have looked at some sort of local list of oldies ….there must be some sort of list…incorrect as I never needed to get deliveries…hanging around that they are working from.
I won’t go through your list point by point…..but I just wish those who are so worried could come to terms with the fact that the country is moving on & trying to get back to somewhere near normality ….& could try to direct their energies to keeping themselves safe & stop feeling they are being discriminated against.
I don’t read FB…but from what I hear of it…it is not really to be relied upon for anything.
1) The newspapers and TV programmes are doing their best to let the public know what immune suppressed means and what conditions or treatments makes some people immune suppressed.
2) Supermarkets emailed you offering Priority Access because you were identified as CEV (probably by either your GP or Rheumatologist) and put on a list which was sent to them by the Government. Please don't worry if you don't want to use the facility, but lots of us do.
3) We are directing our energies towards keeping ourselves safe, one way or another, thank you.
4) FB is great, but few of us rely on it for important information. Personally, I prefer Twitter. Did you see that brilliant spoof video of Boris Johnson being grilled by the Line of Duty team? It was on FB and Twitter.
5) The Video will work I am informed by others on this site. Love that tune - it's a classic!
6) Have a good evening. I'm off to open a bottle of Primitivo. Cheers! 🍷🍷
Oh wow AC, this is a incredibly disappointing comment. I don't think anyone is saying we don't expect the country to go back to some kind of normality..not at all, we just want some guidance for the long term especially with dealing with Employers, having to return to using public transport and getting back out there. Your comment is what some of us are facing in our daily lives, incredibly disappointing that "stop feeling you're being discriminated against" came from one of "own"
How? We are free to act as we think fit…..we really must not sit back & expect those who don’t have compromised immune systems to continue in purdah….just because we have to be extra careful……can we?
Well what is it that is being required…to help all those who feel neglected & ignored?We have mostly had our vaccinations, …yes the distribution of the anti virals doesn’t seem to be going too well…but in most parts of the country the infection figures are falling.
Realistically….just what can be done to allay the feelings of those who are so unhappy?
Yes we should help those in minority groups, you might have found disabled, gay ,black life's minorities all got help. Can't see why this minority of CEV people can't askfior help. Sorry I don't agree on this point AC
I agree with you allanah and Lolabridge . I don’t think anybody is expecting people to stay at home for us or massively hamper their lifestyle but I don’t think it is an infringement on anybody else‘s personal right to require people to wear masks on public transport and indoors in crowded places and afford some support and legal Rights regarding those who truly do remain vulnerable with regards to eg working from home and similar…. I don’t see how that negatively affects the quality of life of those who are well? ….but it would make a huge difference to those vulnerable …
I feel there is a big divide beginning to appear amongst us. Please try to understand that mask wearing is a big deal for other vulnerable groups like people with Asperger’s ( who struggle to read facial expressions at the best of times) , deaf people and children learning about the world. I have concerns as we all do for my own safety ,and want support from the government to enable us to shield when required . But the masks for everyone is just not fair now.
And those people who know that will be looking after themselves and shielding probably, the rest of us will continue as we have done through out and look after ourselves and aim to get back to some form of normality. Some had no choice but to work out early on how to stay safe as we couldn’t work from home. no shielding, no furlough and no money if we just stayed at home.
Hello, Think we’ve spoken a few weeks ago as I do recall your name. No, I meant some people simply don’t realise how immunosuppressed they are and have said so before on here and have no idea if or how well vaccines have worked. As I’ve zero vaccine antibodies it would be madness to go out mingling or indoors. My rheumy said would be like me walking out on to a motorway blindfolded. Best of luck to you going to work but it’s not my fault you need to do so, just as it’s not your fault I need to shield. It’s the way it is, but some people on here have become unsupportive and mean to others too.
As I said earlier and with this in mind, I feel I don’t want to soak any of that negativity. Everyone is entitled to a view but to be unsupportive as a lot of it was earlier ... is not good. So that’s goodnight/goodbye from me and sorry no further reply from me. I’ve been conversing all day. Stay safe.
Some people have to go to work to survive! Might not be fortunate enough to be getting pip or any other benefit. What would you suggest in those circumstances?
Yes they might! Some people might have to stay at home to survive! Think it works both ways. Without seeming rude, I actually don't wish to suggest anything as it’s not up to me. I am actually unable to work due to OA. I am not some rich lady sat in a mansion. I’ve had to give up an awful lot. Please read my kind message to KittyJ again. I also said no more replies from me to her and I’ve been pleasant about it as I usually am!
Lots of younger people have RA how are they supposed to shield when they have young children and mortgages to pay. Personally I’m neither young or rich, but, i have had 4 jabs and will take my chances to enjoy my gorgeous 6 grandchildren. It is a matter of choice but alas some people do not have the opportunities which others have.
No more replies. Please accept I’m not going to. I’ve been supportive of everyone. Never criticised anyone working. Not sure how you might think that 🤔 Wishing you well.
Which was kind of my point. The majority of people in the UK work for small businesses and the situation is becoming untenable.
A friend who owns a similar company to mine has five people off and now her clients are complaining and threatening to leave as she doesn’t have the cover to service them. And hundreds of thousands of similar stories. Because testing and omicron is so prolific, it’s become an issue now with so many positive tests and majority have mild or no symptoms which surely is saying the strain is weakening.
To be fair, I still don’t fancy catching it so do my own risk assessments. But the world can’t just grind to a halt when we’re not where we are in 2020 and half of 2021. There has to be an end to this somewhere-whatever that looks like.
The irony of people being too disabled to work or do things being in a better position than people who have to go to work to pay for basics is a very sad time for society, and speaks volumes about it.
A lot of disabled people have to work because they have no choice. Especially if you are poor and disabled. It’s a sad situation that this country is currently in dog eat dog mode.
That is so true KJ….the majority of people here do know that & are soldiering on try to live lives they can enjoy…..not spending too much time wondering what if?
Could I just add that England is dismantling all mitigations faster than the other 3 Nations, mask wearing is still mandatory in Scotland for example, and employers must enable staff to work from home where possible. Changes are coming, but they are being undertaken at a slower place, which for me seems more sensible.
I did hear somewhere (whether it’s true or not as it was on the internet 😂), that public transport will request masks are worn. Whether people will take any notice, who knows.
So I read through my post it wasn't intended for those of you unworried about plan B being reminded but for those of us who do feel we need more Governmental advice around all my original points . I hope this clarifies what I was asking and takes the debate back to my original questions about antivirals and vaccine "shields" , those who have to work and are anxious and those who would prefer supermarket priority to remain. I will update those interested if I get any replies from my MP , have a good weekend x
Having run an NRAS support group for some years in the past it was my experience that NRAS were in constant contact with politicians and I am sure that is still the case.
I think the best outcome would be that the vulnerable are protected and given the resources to stay at home if they want to . The risks of serious illness and death from covid is comparable to the flu now and it is important that masks are removed from rest of society. My husband is deaf and since this rule he has effectively been cut off from communicating in restaurants and shops and everywhere he depends on lip reading. Also the effects on children developing key skills is immense. We are not the only vulnerable group and we need to be aware and fair in our approach. The money now being wasted on testing everyone for something as widespread as this could be better used to develop treatments and make sure the vulnerable are given vaccine boosters as often as they require.
👏🏼👏🏼👏🏼👏🏼I’d not thought about the deaf community. It must be impossible for them.
I think the majority of companies will keep some aspect of working from home as it is so beneficial to many people. Also reduces business costs. Unfortunately there are still people that feel they need to ‘see’ people working as they’re generally control freaks.
I hope the powers that be can be persuaded to take some kind of measures that will help the severely immunocompromised, so well done for raising the issue with your MP. In the meantime, I would like to (partially) respond to one of your queries. I know a lady who has had a double lung transplant, so is on lifelong immunosuppressants. After her second covid jab she had an antibody level of 17. I am aware, of course, that some people have zero but 17 is still an extremely low level. Last year (before her booster) she caught COVID, at the same time as her Mum and stepdad. She was given an antibody infusion and then sent home. She never became seriously ill - unlike her stepdad who had no known health issues but was hospitalised. I hope you will find this at least a little reassuring. xx
Certainly but I would feel much more reassured knowing if I personally have antibodies to covid sars2 or not. I've had 4 jabs but lots of RA infusions and and drugs and steroids , so it would be good if there was an easy test to find out, there's lots the government can do
I agree! I definitely think that the immunosuppressed should , as a matter of course be tested for antibodies and T cell responses instead of blindly being reinjected over and over , not knowing where they stand with regard to vulnerability. How can we make choices without this information. This is what we should be lobbying for. Information is power and the government in all 4 nations in U.K. are keeping it to themselves.
What a brilliant and sensible comment! This is very much what is needed as Allanah has said at the start of all this, I'm sure absolutely no one who is immunosuppressed expects the country to Shield anymore or carry on with restrictions and I very much want to get back out there, living my life and doing the things I enjoy, as I'm sure many others do. It's very clear there is a divide on this however...I have a foot in both camps but being immunosuppressed and on one of the drugs which can limit vaccine efficiency, some clear guidance and measures on going forward into living with Covid for the immunosuppressed would be good. Enough time spent on this..but thank you Allanah for starting this post. X
I agree that it would seem both practical and considerate to offer antibody tests to the most vulnerable, so that people could make an informed judgement of their own personal risks.
The lung transplant lady I mentioned decided not to shield after the first lockdown, despite her low antibody levels. But she was able to make an informed choice because of her test. She knew her antibody levels were low and her risk high, but she feels that she is living on borrowed time (she has survived ten years longer than expected, already) so just wanted to get out there and live life to the full. Her consultant even gave her his blessing - said he hadn't given her a transplant so she could just sit at home. Obviously, your situation is very, very different.
I just missed out on the third primary dose as I am on 20mg mtx, so I paid privately for an s-antibody test from "Monitor my Health", to reassure myself (or so I hoped). This company are a not-for-profit entity, set up by the NHS and they use an NHS lab, so I assume they are reliable. About 12 weeks after my 2nd jab my antibody level was 211 U/ml (the Octave duo trial defines low responders as anyone with a level below 400) so I was fairly cautious until after my booster. I then tested again and had a result of >2500, which really was very reassuring. But we always have to remember that no-one really knows how the numbers relate to our chances of getting really sick, and there is a strong suggestion that the T-cell response is also very important and there are no tests available for that, as far as I know. Also, the test only gives a snapshot and I don't know how rapidly the levels drop. Obviously, it shouldn't be necessary for vulnerable people to have to pay for their own tests (especially since many will have had their work history disrupted, so may be less able to pay), but it is there as an option, if you feel it would benefit you.
My GP ordered the test for me as I was hoping I might be able to travel to Rome in October for my daughter’s wedding having had my jabs. The result was <0.06 so zilch. I had to stay at home as my consultant had told me I should. And I have done pretty much ever since! So many of us may have made very little response even after 4 jabs. So may we have those PrEp drugs please NHS.
Gosh, Lolabridge, that is so hard. I do hope the NHS can offer you, and others like you, some suitable alternative drugs asap. To miss your daughter's wedding must have been dreadful. I am going to miss my stepdaughter's baby shower in a couple of weeks, but confess that it is mainly because I find her friends too loud and too coarse for my taste. (They all seem ok individually, but I find them unbearable en masse, especially since I wouldn't have hubby to help me cope.) So, at her suggestion, I am using my immunocompromised status as an excuse for not going. But I do regret not being able to go to Athens for my younger brother's funeral last year
Oh yes missing his funeral must have been really sad for you on top of your natural grief.But missing the baby shower will be ok I’m sure if you send nice presents!
I’ve got a granddaughter’s arrival to look forward to in May so that’s something lovely to look forward to. I hope I get my new RA drug and some antivirals by then so I can make myself useful!
My other daughter is planning to come over from New York with her Italian husband to meet her baby niece when she arrives in May, so I hope it will be possible for us all to meet up safely by then. 🙏
It is England that is going the dismantling of plan B alone. The other 3 nations aren't and neither are most other countries.We can only guess at why this might be so.
Yes I do feel the major charities should discuss our long term protection through whatever means, testing , real access to antivirals, antibody testing ti make it easier for you. The "all out now " approach I feel threatened by.
While I don't disagree with ending compulsory mask wearing in places such as cinemas, pubs, restauraunts and other indoor spaces because I have a choice of going to such places, I am totally against ending compulsory mask wearing on public transport, in shops and other indoor spaces where the vunerable don't have choice in the matter as they have to travel to work or go about their daily lives. I'm one of those as I don't drive and know only too well what it's lke being on a crowded bus with several passengers not wearing a mask, or have them pulled down around their chin. I've said this here before but will say it again...just what is it that's so difficult about wearing a mask on a 20 minute bus journey or for a half hour in a supermarket? I have no issues with it and I have a lung condition! Answers on a postcard please.............
edit...what a bunch of mamby pamby whingers we've become in this country!
google.com/amp/s/www.standa... like public transport may ask people to continue to wear masks. I realise this is London transport but it may be the situation UK wide.
I don't think asking is good enough, which recent weeks are already showing in parts of the country. Government should make it compulsory nationwide, at least until infections are at a low level, which they certainly ain't as yet. Mask wearing in the places I mention has no effect on the economy and the civil liberties thing doesn't wash with me. The vast majority of people who whinge about that are no doubt healthy and should try living in a country where human rights are really stamped on.
To be honest, I'm not sure the level of compliance would be high now. It can't be easy being a bus driver confronted by someone refusing to wear a mask. I certainly wouldn't want the job. I agree with you that I think the restrictions on transport should have remained as it doesn't seem too much to ask people to do.
Absolutely agree about a bus driver having to confront someone refusing to wear a mask. Probably way too late now, but strong decisive leadership was needed instead of all the mixed messaging we had throughout much of the pandemic, which I believe would have made quite a difference to people adhering to the rules
Maybe. I'm not sure our social structure and community would have behaved any differently. We're very different from even France or Spain and completely different from the East where many citizens in countries like Korea etc...voluntarily stuck to curfews etc...
it was hard work typng my previous replies to you. DON'T NDERSTAND IT.....THE FORMAT KEEPS CHANGING AND IT REFUSES TO TYPE I AND U ON TIMES, AS YOU CAN SEE.
IT'S A PAIN! IT USED TO HAPPEN WITH MY last PC but nothing like ths. Doesn't happen on other sites or my email, just this one. it's froze 3 times in the middle of a post so had to start again. It's typing ok for some reason now but can guarantee that won't last.......
Well that sparked some debate !!!! Thank you for all the replies, I didn't expect that many alerts !!!!
I skimmed through a lot of this. People are allowed to be concerned for their health/ lives. Making political decisions rather than public health ones is an issue, and has been throughout this epidemic. This is a well known fact (for those of us who know what a fact actually is).
People come before money in my book. We should have a collective strategy. It is a Global pandemic and will not cease until there is co-operation between all of us.
I replied as you were flippant (unbelievable) and there is something very “wrong” here happy. Feel bad for you you’re doing this and I was not aware how many people “liked” it. Didn’t even look at that.
Can I please ask NRAS to ask you to stop this. You are making Allanah’s thread awful. I have seen you going at it with others so it’s not just me but it’s distracting from the positivity of the thread.
Do you realise how bad this all looks and as I politely said before we disagree and it’s been going and in circles so we won’t change our views. Now really .. goodbye.
Thank goodness, just go. Never, never said people couldn’t have a view so that’s unfair. It’s how you say it that matters. I said those people so I didn’t use your name trying to be polite and same for the other woman. Trying to be polite that’s all. My life is pretty amazing too and will be even better soon. Genuine good luck to you but please don’t speak to me again. Never never said people couldn’t have a view so that’s unfair.
I'm kinda sad to see all this. Tbh I'm not sure how immunocompromised I am being on benepali and sulphazalizine I have no antibodies im told as part of a trial but no matter what I have worked all the way through the pandemic except when I had covid and continue to do so but I'm not sure I like the aggressive tone when this is a support group everyone will do what they think is best for them and it would be great for people to feel supported no matter what side they sit on I would like to think that kindness would be the theme of a group like this and we would be supportive of everyone
My post is a supportive one if you read my initial ideas x sorry some don't agree but that's up to them , we are all different, don't be put off , some folks in groups always disagree,.I'm happy to agree or disagree and I hope respectfully xxx
Hi AllanahCan understand your apprehension, must admit to being terrified in March 2020 when my son unknowingly brought Covid into our home from university.
Immune suppressed myself and my husband in his 60s with COPD and on regular steroids . There was little if any testing, no definite treatments and certainly no vaccines, and Rheumatologist’s weren’t helpful because they basically had no idea .
Anyway , my husband faired better than myself and l ended up in hospital for a night and they seemed to think ( still so much unknown at this point) that because my husband and myself both take vitamin D3 that although ill for several weeks we fought off the virus.
My point really is that since then l have taken part in life because we now have treatments that work and the vaccines. Know of 2 people that are both in different circumstances with immune suppression, one who had just started aggressive chemotherapy and caught covid whilst in hospital in December and both have recovered well , because of vaccines and the new antiviral medication.
My husband has just recently received a package with a high priority PCR test and instructions for access quickly to antiviral medication should he test positive.
So whilst we all must still be careful , there are things going on that means life can go back towards a new normal and treatment planning for those that could need it .
I think the government need to ensure we all have these things. Many on here are having difficulty getting the pcr kit and antivirals which us what my original points were above. I hope we can get these easily and further future vaccinesvsnd antibody testing to help us move forward. I'd hate to get very ill from covid then 3 weeks later the shirkding vaccine for example comes out ha ha!!!! Let's hope it moves forward as much as before xxx
Thank you for all the comments, should we finish up now x that was my first post for a long time having had a total knee replacement and just catching up with news, one I won't forget about 🤣🤣
I'd just like to say that I empathise with both/all sides of these issues. We're all in different situations and there's no one single perfect response/course of action that suits all. On a general point, in dealing with the virus there does have to be a combination of government responsibility, especially to the most vulnerable, and taking our own personal responsibility as much as possible, to different degrees in our individual cases.
On another general note, despite hiccoughs with vaccines, tests, rules, behaviour etc, it's still pretty incredible, when sitting back & viewing the whole situation, how remarkably the country has dealt with the virus - from the brilliant scientific response, to the practical roll-out, to the way the vast majority of people have adapted and dealt responsibly with restrictions and so on. Yes, regrets, mistakes, but when you consider how many years other research & vaccines & programmes etc have taken in the past, the response is rather incredible. Everyone's point on here is valuable and valid as, although we have this forum and our health issues/concerns in common, we're not all coming from identical situations, so it's good we have diversity here in opinions & debate, while empathising with each other's situations. Here's to us all keeping the virus at bay and RA under control 😊💖👍
Thank you to everyone who has gotten involved in this thread.
NRAS are aware that it is a complicated issue and are monitoring the latest information and guidance closely. The charity will be making a public statement on this as soon as we have the latest information from the Government.
In the meantime replies to this post have been turned off.
Best wishes to you all,
NRAS team
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