Has anyone received this letter from GP, stating that you are vulnerable that the government was talking about? I haven't received mine yet & so I am beginning to wonder if I will get one.
My sister & I have both since received a phone call from the NHS. To tell us that we were missed of the list, but that we are included on the list & we are to shield.
My family & I received a letter from our MP. Asking if we are managing to get deliveries ok & prescriptions delivered, if having difficulties to get in touch with her.
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That’s very odd that your parents haven’t received one, are they getting text messages either? Have they tried calling their gp? Might have been a mistake somewhere that means they didn’t receive letters
I have a terrible idea that lupus isn't on the list, neither old age. I'm on the list but due to COPD! The list I got was very small, no asthma no heart conditions no elderly folk. I think there's a serious risk list and a vulnerability list but no one's got that yet. I've found being on the list hasn't helped me get online shopping slots or pharmacy delivery of meds.
I've not recieved one either although Lupus SLE is stated as high/very high risk on the nhs website,, I also have Vasculitis & IBS which is not helping!!
More concerned my employer will need to see this, so if o don't recieve the letter I'll probably have to return to work and take the risk!
Stay safe everyone and hope we get through the other side ♥️
Hi steve, I’ve got Lupus SLE also and have received a letter. Maybe it’s the medication you are on, mycophenalate puts me at more risk as it is an immunosuppressant but it is what has been keeping my lupus under control so I need to keep taking it.
I hope that you can stay safe also as well as feeling safe 💜
Hi! Can I ask does the letter state you need to stay at home for 12 weeks? I got a letter to state Im ‘moderate’ risk and to ‘be stringent when isolating’ but I dont want to go back to work until after the 12 weeks!! I have sle & lung issues.
Hi Shann, it says “the safest course of action for you is to stay at home at all times and avoid all face-to-face contact for at least twelve weeks from today(which was 21st March) except from carers and healthcare workers who you must see as part of your medical care.” It also says that I am someone who is at risk of severe Illness if I catch Coronavirus. However, I suggest you do what your gut tells you, it is most important that you feel safe and I can understand completely why you don’t want to go back to work for the next twelve weeks, it can be very scary and worrying when you have an illness.
Thanks for reply!! Yes my letter does say that Im at risk of getting severely ill, but Im ‘moderate risk’ and should practice ‘stringent social distancing’ etc and only go out for essential stuff such as meds etc. My work is requesting the 12 wk letter for my absence, so Im awaiting GP advice, as my GP told me she dosent want me going to work. 🙂
I’m glad your GP is helping and definitely don’t go to work if your GP recommends. I hope you get the letter or something else that will show your boss you’ll be safer at home 😊
Aww thanks ...why do employers have to be so difficult at times, the letter should be self explanatory i.e. I will get severely sick and very likely hospitalised if I caught covid!! How easy to understand is that, I just dont get it 😑
I'm so pleased that I don't work. I was forced into medical retirement by mine 24 years ago. My employer, Inland Revenue just didn't understand SLE, so they probably would have been awkward and not very understanding. However you also have disability discrimination laws on your side, so that might be some help to you, but personally I would self isolate if I was you.
Great that you aren’t there now then. I’m fortunate that I work at schools so they are shut anyways and they understood when I told them I will be self isolating for 12 weeks
I received mine just yesterday as they is a back log with Royal Maia now as so many staff are off. The letter states I was "missed" by the hospital and they have picked me up, unbelievable was missed I have been immunosuppressed for 28 years.
The Royal Free in Barnet and the Royal Free in Hampstead are in the same trust and struggle to communicate information between each other. I can only imagine the difficulties on a national level communicating the information. Its probably better than it was twenty years ago though, where everything was files in archive rooms etc. So there is a bright side.
I just love that. I would have thought that rheumatology blood nurses & secretary would work together to know who is on immunisuppresents to send out these letters
Hi I received a texted from NHS monday then then letter arrived Thursday I have Lupus and COPD and Asmtha . Thete seems to be a lot of Lupus patients not getting letters not sure why .
I haven't received a letter. I have Lupus and Asthma. Although, I'm only on hydroxychloroquine but I am on a very high dosage steroid inhaler, which apparently I'm meant to self isolate for 12 weeks. As I live by myself and no dependents, I've still had to go to the pharmacy, food shopping etc. I've got no choice.
Amakuru hi about your medication l was in the same position as you so l phoned the chemist told them l was stuck in with no one to collect for me, so now they deliver,
its worth a try you could cut out on of your worries. good luck good bless Rodders
Amakura hi, thanks for reply yes seems as if we all have to stand our ground
now , this virus has high lighted all lung diseases, we are now top of the pops world wide which my be good for us in the long run, Amakura hang on in ther, at last our day has come. !!!!!!!!!!!!!!! god bless Rodders
I received a text first, then the letter came the next day. Lupus doesn’t mean mean you will be on the Extremely Vulnerable list but it is more dependant on medication or other conditions, Lung Conditions, Cancer and then immunosuppressant drugs. All Extremely Vulnerable people should be contacted by today at the latest. BUT if you have Lupus you should follow the advice about Social Distancing and staying in where possible for 12 weeks xxx Stay safe
I contacted my GP who said much the same. Its the strength of the medication that matters, not simply the fact that you have lupus.
Luckily I take a very low dosage of medicines and have finally managed to wean myself off Prednisolone with no ill effects, but I agree, I'm taking no chances and am not waiting to be told I need to be careful.
Yeah, the Doc mentioned the points system, I would'nt score enough, since I've managed to reduce my medication to the bare minimum over the years. I've been lucky enough to be considered "under control" after 15 years, but even so, I'm taking no chances, I haven't gone through all those years just to let some virus kill me because some Doc decides I don't score enough points.
Yes. I got a letter from my GP a few days ago advising that I am in the "at risk" group and should follow rules about social distancing etc, etc. My husband, who has diabetes, got the same advice by text last week. I think I got the letter rather than a text as I don't think the surgery has my mobile number. I imagine that it has taken time for every surgery to go through their patient list and identify all "at risk" patients so you will probably get a letter or text very soon. I imagine a lot depends on the number of patients on each surgery's list. I live in a rural area so assume my surgery has fewer patients than a surgery in an urban area. You should obviously comply with the lockdown even if you haven't received a letter or text.
I have SLE, an atrophying kidney, Raynaud’s, and angina and am prone to coronary artery spasms, and I have heard nothing either. In fact my routine appointment with Rheumatologist next week, which was already 5 months late, has been cancelled, not even a phone appointment offered. Luckily we have a Rheumy helpline so if I need assistance I can use it. Perhaps a letter will come eventually, they are no doubt overwhelmed by the numbers involved.
I'm staying home as with the Lupus SLE I have the lung disease, Vasculttiis, chronic Reynolds & some other associated conditions . I had to go into the hospital this Monday for a specialist neurological test which couldn't be delayed they said due to new symptoms in my body after unexpectedly being physically assaulted in February causing fractured left shoulder plus increases symptoms with the neuropathy symptoms I live with but also new neurological symptoms I've not experienced since 2013 diagnosis when all these conditions came together.
The professor said he will try & get the results analysed quickly so if I need additional treatment I'll hopefully get it during this time so I'm trusting God in it all and grateful to be alive today despite it all!
Hi, I received the letter last week. I have Lupus SLE,Vasculitis, urticaria & other autoimmune conditions. It's from NHS England & signed off from my medical GP practice. This is my first post/response here so please bear with me.
The letter includes the 'List of diseases and conditions considered to be very high risk' - nhs.uk/conditions/coronavir...
There are 6 categories on the list - I have edited/abbreviated them down to try & keep this post as concise as I can. The list is quite specific & there is also a separate list online of the immunosuppressive therapies referred to at category 5 including levels of steroids, methotrexate, mycophenolate etc
1. Solid organ transplant recipients
2. People with specific cancers ( with a list of these)
3. People with severe respiratory conditions inc CF, severe asthma and severe COPD
4. People with rare diseases & inborn errors of metabolism that significantly increase risk of infection like SCID,sickle cell
5. People on immunosuppression therapies sufficient to significantly increase risk of infection
6. People who are pregnant with significant heart disease ,congenital or acquired.
I am on a multitude of meds including prednisolone, mycophenolate & hydroxycloroquine - so got letter for the first two - not hydroxychloroquine. The issue of a person's age is not a determining factor.My father & father in law are in their mid eighties with health conditions like heart disease,diabetes etc but have not received the letter - neither has my husband who is in partial remission from a blood cancer. Again, having Lupus etc does be necessarily mean you will get the letter.
The Lupus UK website is very helpful & do check the nhs.uk website etc.
I hope this clarifies things a bit. Despite receiving the letter, I have heard nothing else, no specific help with anything. All appointments apart from DMARD tests cancelled. One dept even mentioned being discharged - I'm very concerned about future appointments(lack of) and treatment plans. This is very worrying & stressful for us all.
Thankful for the updates from Lupus UK etc.
Sorry this is so long despite trying to keep concise. Take care
So if we have to self isolate for 12 week + where do we get the sick note from for the employer,, or does the letter cover that? As my employer is an arsehole and doesn't think anyone on the planet should be ill Steve
Hi yes same here I have called my DR and she said isolate for 12 weeks so I am going to e mail my boss consultation with my Dr which states this and I work for NHS good luck stay safe x
Hi, I work in the nhs and Im in the same position. My manager was in contact to request the ‘letter’ that GP should be sending out to cover me for the 12 weeks. So its this letter you need to give to your employer. I spoke to my GP and she advised that as I have recently come off some meds and now just on Hydroxy among others this wouldnt put me in the ‘high risk’ group of immunosuppressants, even though I have alot of lung isssues due to lupus, but GP said she dosent want me to go to work. I received the letter stating Im ‘moderate’ risk and should practice stringent social distancing and isolate, but dosent say for 12 weeks? Im not sure if this letter will be sufficient to cover me for the 12 weeks for work and also as it dosent state ‘high risk’? I’ve seen on nhs guidelines that sle itself is graded as ‘high risk’ regardless of medications?
I also work for NHS but haven't received a letter yet. Whereabout in the NHS guidelines does it state that Lupus is high risk so i can show my manager. Thanks
I don't know as I was forced into Medical retirement 23 years ago at the age of 30, so I'm unable to help you, but you could ring your GP to ask is the best I can suggest.
My doctor told me they are not issuing certificates for self isolating although she agreed that I should as I'm on Prednisolone. Luckily my employer says they do not need one in these extraordinary circumstances and they are paying me SSP.
I got a text from the NHS must be 2 or more weeks ago saying "We have identified that you're someone at risk of severe illness if you catch Coronavirus." Stay at home for 12 weeks, I can open a window but musn't leave the house. I've since had regular texts full of advice each day. Had just one from GOV.UKALERT telling me to stay at home.
I'm 73, have asthma and until october last year was taking hydroxy for mild SLE. My immune system is stable and according to the doctor I saw in rheumy in october its been ok for "quite some time" so she stopped the hydroxy. I also have Sjogrens.
Its a very unsettling time for us all. I've just followed the instructions and advice I've been given via texts although I've been out for a 5 min walk just up the road and back with my son who lives with me. We're having problems getting food online and thats been my biggest concern.
I'm guessing I'm at risk because of the asthma as the virus is a respiratory one. I can understand your fears but think of yourself as needed so much, we're depending on people in your profession. I'm sure they wouldnt force you to work if they thought you wouldnt be safe. Sending a hug and assurances xxxxx
Yes absolutely the asthma on top of everything else would make it far too risky for you. I want to keep going so I am taking it one day at a time. Your kind words are appreciated xx
You will be able to register here and the government will arrange weekly food parcels for you as you are extremely vulnerable and having to stay home for 12weeks.
I received my parcel today and was pleasantly surprised at the quality and amount provided. Hope this helps.
I received a text followed by the letter quite some time ago and have daily texts since then. I have registered in the gov website as vulnerable with nhs number so I can (hopefully) access the limited delivery/collection slots available to those of us who are vulnerable. I have severe asthma, bronchiectasis, a breathing disorder and am on a number of the medications that automatically thrust me firmly into their most at risk category. I am very glad to be living in Cornwall and well away from any city and/or high density population areas.
It would seem that most letters are being sent to those with lung conditions that are considered severe and/or are severely immuno-suppressed. Anyone else comes after those people. Although it seems even perfectly fit and healthy peeps are dying from this one. Nasty stuff. Stay safe everyone and pray this passes us by as swiftly as possible.
Not everyone will get one. I have SLE, Sjögren’s syndrome and chronic Neutropenia and was told by my Rheumatology Nurse I wasn’t in the high risk category. I am a nurse and have to work and I am terrified beyond measure xx
I am virtually hugging you. You are so brave working with so much worrying you. I no I cant be there for you in person but I am there for you in spirit x
Hi. No I havnt received one either and I know for certain I am vunerable. I am on Prednisalone and Methotrexate. Not to mention more medicines. I have SLE Lupus, secondary Sjogrens, other syndromes, CKD stage 3 and multiple comorbidities. My consultant confirmed my status over the phone and told me to self isolate for 12 weeks. I rang my doctors surgery only to be told by the receptionist (rather rudely) " if you dont receive a letter then you cant be high risk or vunerable". I am shocked at the attitude. I dont know what to do myself. I hope you get things sorted out. I am just winging it. Keep safe xx
Hi William. Our neighbours have dropped off sheets of paper with different codes on. They are green for we are all good, amber for we need help and red for we are sick so stay away. You pop whatever one in view at your front window. If you use amber someone will knock and step back to a safe distance and ask how they can help. They collect shopping, prescriptions, etc for those who are vulnerable. Are you in remote contact with any of you neighbours at all who may know about this? That’s a good place to start. Best wishes to you x
I got the letter and have taken a break, as I work as a nurse for the NHS. Have SLE, CKD 3 and asthma (which has been poorly controlled in the last month). I am on Azathioprine, Montelukast and steroid inhalers among other meds. I don't know how the classification for everyone is done but when I checked my NHS app, the GP entered that information prior to the texts and letter. maybe you can check the NHS app, if you've got it to find answers to your question.
I recieved a text from GP then a letter from NHS.also now getting almost daily text from NHS. I have lupus and autoimmune hepatitis not sure which triggered the letter. Hope everyone is keeping well in these stressful times
Yes I got mine and my dad hasn’t got one, he has different health issues to me but is also taking immunosuppressants. Initially thought that this would be enough for us both to receive a letter, but we believe that he won’t be getting one now
I’ve got lupus sle ,I received the letter and also the txt msg last week,I think it might because of the medication I am on (immunosuppressant)that’s why I got the letter ,not sure but try phoning your gp and asking them
Hi I have not received any letter yet I have lupus sle and Raynaud Sjögren and utarcaria with fibromyalgia thrown in . I am still working as I work with vulnerable people . And terrified if I self isolation I will just get sick as don’t get any other help .. barbara
I rang my GP practice today to find out why none of my family, we all have various medical problems haven't had a letter. Apparantly its the government who declared who gets them, GP they have no control of who gets 1 or not. Anyone age 70 + is not getting 1 they just have to self isolate for 12 weeks. The Government are still sending them out. So at least we have some hope and will have to patient dor a change again.
No not received one yet I had a government text but I don't know if that's the same I have lupus antiphospolid syndromes and copd I'm self isolating I'm just going on my third week how are you
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