Shielding letter
Hi, last year when people shielded, where exactly did the letter come from?
Did it come from the NHS or from doctors?
Lupus UK told people with Lupus SLE to shield back in March but I never recieved a letter!!
Luckily my workplace knew about my illness and furloughed me for 12 week, but can't see them doing it again, unless I recieve a letter!
So will probably have to risk going into work!
Cheers Steve
I’m in Scotland and the letter came from the chief medical officer
If you are classed as clinically extremely vulnerable then it comes from department of health and social care.i get mine by text email and then by post x
Ok, thanks for the reply, so I'm guessing Lupus SLE alone won't come under that category! But still worrying
It depends what medication you take.i take mycophenolate and steroids which means I'm immunocomprised and at very high risk of not surviving x
When we went into tier 4 on new years eve I got texts advising me to shield until 1st feb now I will get one telling me I must shield x
Ok, I'm only on hydroqui.... at moment I just thought if you had lupus you had a weakened immune system so in danger! Cheers and stay safe 🙏
I think that was considered the case last march but it was then it was reduced to those of us with no immune systems. I hope you stay safe xx
Snap. (but I also take cloroqine)
Yes I take hydroxchloroquine as well as mmf and prednisolone along with prophylactic antibiotics x
I got many letters. I got from English government, from local surgery and from hospital where the consultant who looks after me is based. All of them seemed to have been sent independently and all had same content.
But I am asplenic and take mycophenalate, prednisolone, hrdroxocloq..., Prophylactic penicillin etc.
Ok ty, do you suffer with more than lupus sle tho,
Yes. And when I flare my respiratory system is under attack. I get lupus pneumonia. Also ITP
As far as I know, the first shielding letters in England came from the NHS. Your own hospital and/or GPs sent them. You were asked to register with the government website and since then, the ECV letters have come straight from the government, signed by matt Hancock himself! SLE puts you at increased risk but doesn't put you in the ECV category on its own. You should have an individual risk assessment for work though. If you're not happy with the measures put in place, make sure you say so in writing on your risk assessment. My consultant advised me to do that in case of future problems with sick pay. It makes your employers think too!
I got the first letter from the Interstitial lung dept.The second one came from rheumatology.
The third one came from the NHS.
TheGOVT. Now communicate through text,email and letter. Enough to wallpaper the small bedroom.take care
I met the criteria having Sle Lupus, Vasculitis, and Type 2 diabetes on several drugs, but didn't hear from NHS England or my Rheumy. I was sent this link by my Gastrologist !! Luckily I work for the Nhs and they accepted this. This is the link I was sent to determine your risk. pro.ispringcloud.eu/acc/RiT...
The letters come from Matt Hancock as the cabinet office has a list of all ECV people on a confidential data base so that letters come out directly from them. I also get one from my local council along with texts and emails. I think Ive had 4 in the last month from MH!
I have sle and never got a letter to shield... my manager decided for me that he wanted me to shield.
Mine came from chief medical officer and I keep getting them i have received at least 5 letters all the same since March I guess another will arrive this week along with texted messages .
Hi. I have SLE and on hydroxy and Methotrexate My friend with very similar symptoms and the same meds got a letter last time but I didn't . I have Rhuemy today, if they see me, and this is my first question I will report back with the doctors answer.
My work know about my illness and meds. They have told me to stay home and work from home. It was OK during the lovely weather we had last lockdown but this time will be so depressing .
On the web pages there is the tree diagram by rheumatologist that shows if you should shield. It is based on medication and clinical risk. So, I was told to shield in March but as they learnt more I am now just normal regulations as I only take HCQ. The tree helps. It is by the rheumatologist. Try the different Covid updates.
Bottom of the last Covid update has the categories and which medications
I am just recently on immunosuppressants and steroids , about 6 weeks for immunosuppressants and a few months of steroids. I asked my surgery if I I came under shielding and they said yes , I should receive a letter telling me what to do , not received it as yet. Hope I have not been forgotten about as want to be in line for vaccine !!
Hi
I didn't get a letter originally so I called my GP who agreed I should be shielding and produced a letter for me. I think there was then a 2nd round of letters and in April I got one from the DHSC and then a week or so later I got the same one from my specialist hospital.
Even now I get an email and 3 copies of the shielding letter every time we are supposed to shield! Its a bit overkill but I'd rather 3 copies than none as I work in the NHS and there is no option of furlough.
Good luck!
I can understand your concerns, overall it’s suddenly become a very difficult situation. The key to being classed as CEV seems to lie around taking immunosuppressants and/or steroids. Here’s a useful diagram: leedsth.nhs.uk/assets/f6d9e...
Are you working in a person-facing role? If so, I’d try talking to your rheumatologist for clarification. It’s a horrible time and send you best wishes.
Is it only those who are still working who get letter ? I am medically retired now .
I dont work now but still get the shielding letters as im immunocompromised
Hi, Im not currently taking immune supressants and therefore I didnt automatically ‘tick’ the box for the letter, but I contacted my GP who spoke to my Rheummy and I was classed as CEV and recieved my letter back in March. Basically my consultant knows me best and how lupus affects me, so always check it with your Doctors. I needed this for work. My letter for shielding from now is in the post, my GP phoned me yesterday.
Hi,
I’m in Scotland and the letter came from Scottish Government in September 2020.
Before that I wasn’t on shielding list but doctor gave me an absence line with shielding on it as he felt I should be shielding . Hope this helps.
Mockingbird
Hi Steve,I'm in England and the letter came from the Gov/NHS, as long as you completed the form online and your doctor sent a letter with a code to the NHS otherwise you won't get a letter, as far as I know 🤔
Ah right, I wasn't aware of the online form, thanks for your reply, stay safe
Online form ??
There's a Gov. form I filled out online Gov.uk, firstly, then I had to ask my GP if he had sent a letter to the NHS about my vulnerability, of course he hadn't, you have to ASK them🤨 and that's how I received my shielding letter....👍
Hi SteveMy letter also came from the department of health and social care. I get a text, then an email then a letter every time Boris makes a major change. I have sle and I am on immunosuppressants and hydroxy.
You may not be clinically extreme vulnerablegriup. gosh what a mouthful that is but it depends on how well you are in yourself, we don't really know how anyone is going to react to this virus. Also the way things are at the moment if you can work from home it would keep you safe. Any chance you can, if not stay safe
Oh and Happy New year
Hi Steve The registration form is on link below.My wife was on methotrexate and baricitinib early last year for RA but they wiped out her immune system result -- infections of throat, lungs and also stomach and 6 week in hospital. She was then taken off both immunosuppressing meds to allow the antibiotics to work. She is now on hydroxy alone but this is not on the list of meds list for "CEV". I guess it depends on how sever your illness is, in my wife's case she still is very ill cannot eat and very wobbly on her feet so wheelchair job most of the time. In her case our GP was able to override the official criteria and put her on the "Shielded Patient List" (SPL). Also tip -- check with your GP surgery to ensure that your email address is on your NHS record.
digital.nhs.uk/coronavirus/...
gov.uk/coronavirus-shieldin...
Best of luck
Thanks for the links and advice, keep your wife safe 🙏
Hi, I'm in Wales and mine came from the Welsh Government.
You should contact your doctor & get them to register you with the government then you should get a letter
Hi, my shielding letters have come direct from government and Matt Hancock x
Originally my letter came from the NHS and was actually from my GP surgery as their name and address was on the letter. But more recently, including the text I had and the letter from 23 Dec which arrived this morning, it has been from DHSC and signed by ‘Matt’ and Robert Jenrick.
I think it’s likely that the original government list has now added those found by their GPs and consultants when they went manually through our records. So now I would expect most people to hear from DHSC.
HI SteveYesterday I had my Rhuemy appointment and we discussed sheilding. Her advice us that having SLE does not necessarily mean you need to sheild. It is moreabout the immunoseoressant medications you may or may not be on and tge doses I am on Hydroxy and a low dose Methotrexate so I do not need to sheild . She recommend that I stay home if I can work from home, which I can, but suggested that if I do go in that I wear enhanced PPE. A mask, face sheild and an apron, changed regularly. She did mention people on steroids should sheild.
She said this virus has a different effect on everyone, a healthy person can die and an ill immunosuppressive person may not be very much affected. There are no rules.
So, in her opinion as a Rhuematology physician , you do not need to sheild if you have SLE and are on Hydroxychloroquine. This may be why you did not receive a letter.
I hope this helps and good luck.
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