No letter but expecting one?: I’ve read the BSR... - NRAS

NRAS
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No letter but expecting one?

Devedaaee
Devedaaee

I’ve read the BSR criteria and it looks like I’m high risk. (I score 3). But no text or letter yet. How many of us in the same boat?

62 Replies
oldestnewest

I’m waiting too!

Hi Lola...Me too No letter.......but common sense tells us we know what we must do...having just seen that young man from NI on TV, lying in his bed on Oxygen, saying how terrible CV19 has been for him......nobody in their right mend is going to take the chance of ending up like that.......just because they didn’t get a letter or not being told they are on a list ,,,,,Are they?

All the precautions that should be taken are all over the internet...on NHS & NRAS sites....so we all know what must be done .....let’s just do it...& get on with our lives the best we can!

China has proved it can be overcome....if they can do it...so can the UK.

Ajay575
Ajay575
in reply to AgedCrone

I would not believe a word China says, they still have cases ,they withheld this for 2 months to the world, this all started from china and when all over they will have to answer to this ,and all their information and tv and reporters and run by government etc nothing gets out of china without their permission, the good bit uk is doing it different from rest the rest of the countries a d seems to be working

AgedCrone
AgedCrone
in reply to Ajay575

But isn’t that all water under the bridge for now?

China is back exporting goods we need.....that is surely a good thing?

The Blame game can be played when everyone is well.

Surely the first priority now is to ensure that every recommended precaution is taken? When you see how many people just one person can infect... Can’t the discussions on China can wait until everybody is fit and well?

I’m sure it will be discussed around the world for years to come...but surely today we must just get on with looking after those who are already sick and preventing any more becoming sick?

Ajay575
Ajay575
in reply to AgedCrone

Yeh agree ,but cannot trust a word from china thats all and overcome I'm not so sure ,yeh it is left for amothervday just a balanced view about china with you bringing china into it that's all,p.s all European countries are still exporting goods

But until I get one and am officially recognised I can’t get shopping deliveries as I’m not yet 70! ☹️

I agree that is a problem.....do you think if you composed an email to your GP or your rheumie nurse along the lines of “this is to confirm that Lola??? Is included as vulnerable due to xxxxx..“ he might sign it & get you on the list.?

Otherwise I guess all you can do is hope a friend will help you out.

Do you mean no supermarket will add you to their delivery list unless you are in possession of the NHS letter...or are all supermarket delivery lists just closed to all?

Don’t worry too much...there must be someway to solve this...you can’t be the only one in this position.

Any one got any ideas? Answers to Lola. ASAP PLEASE!

Look on the NHS CV19 website...you Can register yourself Lola.

I have tried .... but I have to answer No to the question “Have you received a letter” and so I think my attempt at registration goes into bin ☹️

Not Necessarily have you gone beyond that Question?

It may go onto a separate section asking you why you think you should be on the vulnerable list.

There are probably thousands who haven’t received the letter I haven’t received one....& I qualify on many counts, but luckily I can get around them, so I am not going to fill in the form just to get my name on the list - when I don’t need any help at the moment they’ve got enough to do dealing with genuine cases like yours.

Do keep going .... I know it’s difficult, if you can’t get out to get food you’ve got to keep trying haven’t you?

Yes I have kept trying. Got a call from Rheumatology today to say I am high risk but they have not sent out all the letters yet.

Far worse, despite returning RA symptoms I cannot have my next Truxima at end April (6 months since last) and will probably have to wait until July or later. Not allowed to have any steroid injections either or increase Prednisolone dosage.

So the advice was to deal with the increasing pain and reducing mobility and take painkillers. 😢😢😢

Sadly a lot of us are in that position now Lola. I know at my hospital rheumatology consultants are going to be over the telephone because the senior doctors are needed to deal with the patients with CV 19. We have been asked not to contact the Rheumy department unless we are in dire straits.

Painful as it might be...I think the people with the virus must have priority.

KittyJ
KittyJ
in reply to Lolabridge

I had an email from Sainsbury’s stating that they are getting a list of vulnerable people next week (not much help to you this week) to be able to offer them delivery slots. It also said they had a whole years worth of contacts in two weeks so that’s why it is difficult. I’m sure they’re doing their best. Is there a community group locally that could help ? COVID-19 Coordination hub I think they’re called, through the local authority.

Lolabridge
Lolabridge
in reply to KittyJ

Thanks Kitty. I've written to Waitrose to ask what they are doing to help us High Risk people who are "shielding".

KittyJ
KittyJ
in reply to Lolabridge

I hope you get something sorted soon x

Lolabridge
Lolabridge
in reply to KittyJ

Thank you

LuckysJoy
LuckysJoy
in reply to AgedCrone

I've done that three times and still no reply so I can't get shopping delivered either

AgedCrone
AgedCrone
in reply to LuckysJoy

I have had a leaflet from my local council...they seem to be organising shopping/drug collection etc.for those who can’t get out.

Why not call your Local council & see if they have anything planned.

Or call your local newspaper ....local papers always have a finger on the pulse as to what is going on.

Ajay575
Ajay575
in reply to LuckysJoy

Hi phone gp or rheumatology to.morrow the government advise this if you have not heard anything by the 29th you can quote this if they try fob you off ,everything's set up for those with the letters deliverys medication everything if people need the help they are 1st priority ,then it is those who register and you have to wait until they get back to you if they do and they decide if your vulnerable,I would get onto them as this could be upto 6 months

LuckysJoy
LuckysJoy
in reply to Ajay575

Cheers, I've asked manager of my care co. To ring gp in A.M

Cheers

Lisa

Yep, nothing yet. However, I already know I’m high risk and as we have the information available to us, will follow all guidelines.

Take care everyone.

AgedCrone
AgedCrone
in reply to Eiram50

Exactly...Whatever risk level we think we are at everybody should take every precaution recommended!

I can’t see how getting a letter should make any difference

Better overkill on the precautions .......than ???

Eiram50
Eiram50
in reply to AgedCrone

Totally! I absolutely get that it’s a frightening and super Challenging time but, we have the power to take every precaution possible and protect ourselves, our loved ones and the NHS.

Together, we can get through this x

AgedCrone
AgedCrone
in reply to Eiram50

Yes we absolutely can..,Don’t wait for a letter.... Don’t wait for somebody to tell you what to do ......take all the precautions Recommended ....NOW! Don’t wait!

We are all grown up .....we all know what to do do .....let’s just do it.

This time next year we will be really glad we did!

LuckysJoy
LuckysJoy
in reply to AgedCrone

Just so you know the difference is the "priority" of getting medications in the event that the pharmacy that is Currently delivering to you, decide to do it on the basis of the letter.

and secondly you can't book an online shop right now and unless you have the letter. so those are two good points. If that helps 🤗

HiddenThis reply has been deleted
AgedCrone
AgedCrone
in reply to Hidden

Ajay ....I have NO issues whatever with these letters....so please don’t surmise that I do.....& do not dare to suggest I am ignoring any of the regulations, because I am not.

The frivolity about creeping out in disguise was a JOKE. Most people understood that, unfortunately it seems you did not.....although it was very obviously not serious.

I live alone, I’m in my late 70’s & my health condition requires that I remain alone in my house for-at the moment- a minimum of 12 weeks. Does that sound like I am ignoring anything?

I maybe old...but as an ex nurse I very well understand the seriousness of this CV19 Pandemic.

I have repeatedly suggested how a copy of the letter can be obtained which together with an NHS number, & possibly a prescription, would I’m sure be acceptable to get on a supermarket‘s vulnerable persons list before it closes.

I have also suggested where further assistance might be obtained.

I would therefore be very grateful if you would desist from bringing my name into the letter discussion ever again.

Ajay575
Ajay575
in reply to AgedCrone

Accepted ,took them down for the best at this time with everything going on,i accept your telling off ,no offence

AgedCrone
AgedCrone
in reply to Ajay575

Thank you Ajay

Ajay575
Ajay575
in reply to AgedCrone

No probs ,sometimes you let it all take over without thinking ,take care do apologise

AgedCrone
AgedCrone
in reply to Ajay575

Thanks......just try not to get too upset Ajay, I’m sure it will get sorted out very soon

KittyJ
KittyJ
in reply to LuckysJoy

Has your pharmacy told you they are prioritising people with ‘the letter’ I haven’t heard anyone else say that’s the case.

Ajay575
Ajay575
in reply to KittyJ

It was on the news that gov are working with pharmacist to deliver all meds to sheilding who have no one to help sure they mentioned food parcels as well on the 5pm briefing tonight also said all them with letters ,maybe luckysjoy has started or maybe soon ,

KittyJ
KittyJ
in reply to Ajay575

But that’s not prioritising they’re just going to deliver meds to those shielding.

Ajay575
Ajay575
in reply to KittyJ

Hows it not it will be done ,so wot if you do not have a letter?,pharmacist do deliverys just now and are busy ,I'm sure they will be prioritised as they are working with government

AgedCrone
AgedCrone
in reply to LuckysJoy

I don’t need the letter LJ...I know what I need to do, & I am lucky enough to have neighbours who are shopping for me.

I have been suggesting ways people can get a copy of the letter if they haven’t received one ......to enable them to get on to a Supermarket’s Vulnerable Persons list.

I don’t know anything about delivering meds....I don’t have any delivered.

AgedCrone
AgedCrone
in reply to LuckysJoy

I think you have got the wrong end if the stick...I was not the one needing the letter.......But thank you for offering to help.

Hi I'm sure I'm not high risk yet someone on here got told she is just with methotrexate? does not make sense all this ,I'm not so sure or know sure if the chart is used across the board with trusts or not ,it is all cofuseing, maybe have to make our own decisions ,the letters and advice ,you are meant to get your letter or phone call etc by the 29th at the latest and if you fo not get one and think you should have or concerned to phone gp .maybe all this should have been left to gps,and it all can make decisions and are very vulnerable

AgedCrone
AgedCrone
in reply to Ajay575

If we all take all the recommended precautions we will be covering all options...as I said before.... Don’t wait until you see every single pill you’re taking & every single ailment you’ve got to appear on the list.

Wash your hands , stay home unless you have to go out to buy food, go for a walk on your own and keep your distance from other people.

If you think you qualify as Vulnerable......I have just been told you can self register on the NHS website under info on CV19website...l Don’t know the exact website but it should be easy to find.

Ajay575
Ajay575
in reply to AgedCrone

That is a gov website everyone can register if you think you are vulnerable, it was not about pills, it was more about letter ,as you cannot go out for food if you are told not to do it ,the whole letter issiues are a mess 3 different bodys giveing advice,which differs ,you can self isolate for 12 weeks on your own accord yes if you think you are high risk but you should not need to think you should be told full stop , it would be good if you where told this if that was the case ,also the letters may be needed to show proof etc and for people who work ,the register yes you can register but know sure if it gets priority or not or to put you in vulnerable group for help,I can assure you people are going to be missed with this system the gov bodys doing it ,instead if gps,we can make our own decisions yes but lots cannot do this as well ,and the proof you get will be needed in some situations specially if you work,pmcc has asked question about some of this on the Qand A forum at 2 pm

AgedCrone
AgedCrone
in reply to Ajay575

As I replied to Lola and as you have remarked there will probably be thousands of people who have been missed off this list. It looks like I might be one of them, but I don’t need help so I’m not going to register myself just to waste their time just to have my name on a list.

Lola needs to be on the list, so it is worth her while to persevere with the form.

Nhs/Gov staff dealing with this are doing their best, and they don’t need people who don’t need to be on the list to be applying.

Devedaaee
Devedaaee
in reply to AgedCrone

Not really about the help, for me (yet!) but about having a confirmation that someone has actually reviewed.

AgedCrone
AgedCrone
in reply to Devedaaee

Sorry reviewed what? A name on the list?

I read somewhere all letters would be out by 29/3.

So maybe wait until Monday’s post to see if anyone expecting to get a letter gets one?

I think we should all follow all the advice given in all the official websites & not bother our doctors & nurses unless we are in urgent need of treatment,

Ajay575
Ajay575
in reply to AgedCrone

I really do not get your point AgedCrone we will leave it at that ,the best is not good enough lifes are at stake here ,if you should or are to be shielded you should be informed of this no matter wot ,know one at all should be missed and the gov are not the right department to deal with this,all at risk should be informed they have to be in home for 12 weeks nit allowed out and no contact with anyone

Still waiting and Sainsbury didnt recognise me as a vulnerable person on their government list. My GP however this morning ( I've got an infection ..)said the gps are not supplying the lists its nhs england? But shes ensuring I'm on the gp vulnerable patient list at their practice whatever that means.

Anyway she said stay in 12 weeks and try calling local shops for delivery.

sunnyweek
sunnyweek
in reply to allanah

If you got through to Sainsburys well done, I've tried numerous times. Have you registered on the government site Allanah, I'm not sure if we should or not. I'm on retuximab.

allanah
allanah
in reply to sunnyweek

I did !as I'm on TCZ infusions steroids leflunomide diabetic in remission asthma low white cells and atrial fibrillation but still havent heard anything official!!

allanah
allanah
in reply to allanah

Ooh forget 2 weeks radiotherapy finished last week, I'm doomed!

allanah
allanah
in reply to allanah

Just git a 5 page letter about high risk and shielding from gp

AgedCrone
AgedCrone
in reply to allanah

See above reply you can register yourself on the NHS CV 19 website

You can still fill in the form & put no letter yet 👍x

I didn't get a letter either, but spoke to my GP today who confirmed I fall into the very high risk group and will flag it up on the practice data base.

I guess there are a huge number of applied to do it's inevitable some of us will drop off the radar.

Nothing yet which is strange because I meet the high risk criteria for RA, my neuro condition and my lung condition. I am self isolating anyway because I’m poorly but HR have asked for confirmation when I receive a text/email/letter. So, I do really need it but post is very limited in my area at the moment, so work will have to wait!

Ajay575
Ajay575
in reply to crashdoll

Hi I'm sure the problem is the way it is being done by gov,nhs England may differ from patient management and the bsr (rumatology) and also nhs engkand may differ from gp or rheumatology ,it is a mess they should have left all this to gps for the letters ,hope you get your letter soon ,

crashdoll
crashdoll
in reply to Ajay575

It’s a huge amount of admin and while I have huge praise for the NHS, admin is not their forte. That said, contacting 1.5 million people is no mean feat, so I am expecting some people’s contact will be delayed and some will be missed.

To be honest, as much as I genuinely love my job and I am a key worker, my health comes first, so they’ll have to wait for a letter. My managers know me well and have no issue with agreeing to an adapted role at home but obviously the official notification is required.

Ajay575
Ajay575
in reply to crashdoll

That's good about work hopefully it all works out ,it is a lot of admin yes ,it is the anxiety, if it all works out good in the end hopefully ,

Mine came this morning and I wasn't expecting one, no text beforehand. So some Rhuems are still getting them out. I think they said before the 29th? To confirm these are not coming from a central database but from individual Rhuematology departments working from the guidelines set by the government.

I got a text on Monday telling me to self isolate because of being very high risk and then I got the letter on Wednesday. It is a horrible feeling when you open it and read it, because although you know it will come, it somehow makes it all seem more real. It even said that I should pack an overnight bag and have it ready in case I have to be taken into hospital. I did that yesterday but I felt sick and shaky after doing it.

Stay safe, well, strong and sane and remember that one day, it will pass.

Guaranteed one this week ,100% that will arrive ,from boris Johnson

Iv had my consultant on phone not all letters are out yet she said I’m getting one so just got to wait

There only sending them out because they don’t need them , kepted them for thereself first was on news last night

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