Is there anyone who thinks they should have received a letter from their Consultant or GP and hasn't?
High Risk Letter: Is there anyone who thinks they... - NRAS
Thank you for your reply Deeb2908, I was just wondering if anyone else was expecting to get a letter and to date hasn't. I know I am at high risk due to the medication I am taking and the brilliant NRAS site. I am retired and in order to register at the supermarkets as being vulnerable you do have to have the said letter. I will leave a message with my Rheumy, maybe they haven't been posted yet.
Are you on one Biologic injection or two? Do you take any other medication with the Biologic and do you have any additional underlying health conditions? I currently only take Benepali which is a Biosimilar to Enbrel. British Society for Rheumatology has advised Clinicians that patients taking one Biologic treatment with no other immunosuppressant medication and no other underlying health conditions have no need to Shield as per the link Below
My rheumatologist said the letters are being sent by NHS England based on a point system depending on your health conditions and medications you take. You have to have 3 points to get a letter. I have 1 point for diabetes and 1 point for Abatacept and 0 point for sulphasalazine. Therefore only 2 points so will not get a letter.
Everyone was to phone gp or consultant if you do not get a letter by the 29th march and you think you should have got a letter you have to phone gp or consultant , it is not just ra lung disease cancer the lot lots not received a letter who should have ,it is a national emergency and only 7 days until uk reaches peak they say
Most of us I guess.... But the letter has been published time and time again on many many websites ...there is even a table showing descriptions of which category a person fits in& whether they should
2. Self isolate
3. Maintain social distance.
Check the British Society for Rheumatology website...on 24 March.
Now of course we should all remain in our our homes except for the published reasons.
Sorry AC but you are missing the point of my concern, and probably others, at not having received this very important letter.
Without the letter we cannot prove that we are in the vulnerable category in order to be able to book home deliveries from the supermarkets or access other help which is only available to people that are classed as "elderly or vulnerable." I am not yet 70 so have to prove I qualify as vulnerable.
I know exactly what to do to stay safe as I'm high risk - I'm shielding!
Thank you so much for your reply Lolabridge, this is the very letter that I am waiting for; it is not on any websites - if it was it could be used fraudulently were by anyone could use it who are not in a High Risk category for RA or any other chronic condition. It all depends on what you suffer from and the medication prescribed for it. Take Care.
I agree with what you are saying both my husband and I haven't received a letter either. I called my GP on Friday to say we hadn't received a letter from the government. They said that the letter was coming from the government not them. I explained I was high lighting the problem that there could be other vulnerable people who haven't received a letter like us who may need help. I have access to my records and they don't have all my medical details documented like taking Benepali and have a lung condition. My husband is over 70 and has diabetes.
I contacted my Biologics nurse. She said that the department had thought that letters were being sent out by the government and, when they found out that it wasn't the case, they made the decision to do it themselves. All of Biologics patients would be put on the 'shielded' list and the secretaries were in the process of sending letters out to patients on their list. Hope this helps. It certainly explains the delay in my area. Stay safe everyone.
My letter arrived on Saturday, sent from my GPs surgery. My elderly parents received their letters at the start of the week. I guess they started with the eldest first before sending to the under 70’s. interestingly when I went onto Sainsbury’s website yesterday it did allow me to book a slot so the info had already trickled through I assume as it hadn’t let me book before. Hope you get yours soon.
I have no idea because I don't know what the criteria for getting a letter are.
According to the Leeds hospital flow chart I'm in the strict social distancing zone (meaning I shouldn't leave home at all) but there seems to be no consensus. A shambles that has done more to confuse patients than help them.
My hubby and I are both high risk but no letter. I’ve been trying to book a delivery slot and they were all unavailable for 3 weeks, I was up early on Friday morning and tried again and lo and behold they had loads of slots, I think they are opening more daily. I could have got one for this week but decided next Sunday would be better as I will be running out of groceries by then, If at first you don’t succeed try try again.
I used to darling. You know when i married my darling hubby i always thought i would look after him as he is 12yrs older than me, yet it is the other way round and i am a lucky girl in him as he does just about everything for me. We now have a cleaner to help him out she does the bathroom, and upstairs and the kitchen or polishes in here. xxx
I haven’t received a letter yet but I contacted my care team and they confirmed that I must shield for 12 weeks. Also, if you register on the gov.uk vulnerable person website then, I heard they were going to pass these details on to the supermarkets, so if you want to receive an online delivery from Sainsburys for example, they will know who you are and prioritise you in the online queue... but it’s not working yet it will take a little more time.
My consultant told me on the phone on Tuesday that being on Benepali and Hydroxychloroquine meant I only had to socially distance not shield and my blood tests can go to every 12 weeks not 8 weeks.
I’m a key worker so have a letter printed from work to either show or have in the car and as I’m currently driving 120 mile round trips to look after my very poorly Mum I carry her disabled badge with me.
Sainsbury’s let me in to the OAP hour with the disabled badge so I could shop for Mum.
Having said all this , I was doing great until the last few days where phone calls in the night and emergency dashes across several counties have made my knees thick and spongy with the familiar bubbling of inflammation starting!
Wishing everyone the best , with their own battle , be it health, bureaucracy, etc etc ( the list is long)
I think a lot of us although we are old I’m 80 I have rheumatoid arthritis a fibrillation high bp and other problems come under vulnerable but the extremely vulnerable are people with cancer, transplants,maybe recovering from recent surgery and although I know we suffer with these health problems if we don’t get a letter ( which I pray I don’t ) I feel if I get the virus I may stand a better chance of recovery than they do
No not had a letter or a text. I have been self isolating for over 2 weeks. I’m on Abatacept currently but had Truxima infusion in Nov only 4 months ago. I have Lung involvement with RA causing small vessel fibrosis & several lung nodules. Currently having 3 monthly lung CT’s due to varying amounts of inflammation. I was in hospital with Pneumonia in November then again with chest infection in Dec I also have Asthma. I am also carer for my daughter who is autistic & has severe ME. I have managed to book an Ocado shop for delivery tomorrow but we have run out of so many things. Mainly fresh fruit & milk etc. I’m not sure how the vulnerable shopping things work but my daughter told me they are mainly for cancer patients or those who have had transplants. I’ve not had the chance to look into it yet.
All I can do is isolate. I will however call my Rheumatology Advice line in the next few days.
I feel i should have received a letter & didn’t. I know i’m not 90! But i’m in my 40’s, on an Infliximab infusion every 6 weeks. Plus i’m on blood pressure pills. (Losartan, 100mg). I started to panic the other night, 2.30am. I had been feeling out of breath for a couple of days, with a tickly cough. I’d had awful flu like symptoms from the 8th of March. (I put my symptoms in a diary). I’d been to a couple of boozers on the 5th March. Then suddenly felt awful on Sunday the 8th. Deep aches in my joints. (Of course, i have arthritis!) A bad cold, cough & totally exhausted. I also noticed my sense of smell & taste had disappeared. That was one of the worst things, as i love my food. (My smell & taste still haven’t come back, plus i still have a bit of a cough, still not feeling normal. So i rang 111 on Thurs. Of course i was ready to be very patient! The staff were so lovely. Said i’d be waiting about 2hrs. I didn’t mind. I put the radio on in bed, got a cuppa & a couple of naughty chocs. Couldn’t bloody taste them. (Just imagined, the lovely cool choc slipping down my throat. Not the same though!) I love listening to people’s opinions. Radio London & LBC. I was expecting a wait. But at 6am i settled down to sleep, still nervous about my breathing. Glad though, that they hadn’t considered me urgent. At 9am someone rang & said they hadn’t forgotten about me. Which i found comforting. Then at 12pm a lovely nurse rang & made sure of my symptoms, said my GP would ring in the next 2 hrs. At 12.50 my Doctor rang. (Nearly 12hrs later!!) He asked me to count as fast as i can, for as long as i can. I counted to 40. He said that was good. But from my other symptoms, he felt i had the virus, but a mild form of it. I had a feeling i had. But i was soooo relieved it was mild. Who the hell wants to go to hospital at the moment? The poor staff. After me rambling on. I didn’t get a letter. Eventhough my Doctor said i’m quite high risk. I still feel wiped out, no sense of smell or taste. Plus a bit of a cough. But thank God no breathlessness. But because of the stress of this whole situation, my iritis is back & i’ve put myself on steroid eye drops & pressure drops. Thank God i’ve got my infusion on the 6th of April. Although it seems a bit dangerous going to hospitals at the mo. But what can we all do? We need our treatment too. Anyway. Stay safe everyone & i’ve come up with a saying. (I think). KEEP EM WASHED!
Hi Cress. I know. I’m torn. I really need my infusion. I had the most awful, awful flare up of my arthritis. I’ve nearly got back to my form of normal about a month ago. I was literally bedridden for 3 months. Indescribable pain. Plus my vision was awful. (Iritis & Glaucoma). But if i do have the infusion, of course i’m vulnerable to this evil virus. (As we all are!) I’m due to have it next Mon. I’ll have to call my infusion nurse. Take care & keep em washed!!
Hi everyone, ive not received one yet, not sure if I will looked on the graph type thing didn't understand the prednisolone bit, I take 3mg of pred and 20mg of leflunomide daily, but even if I do get one not sure it would be of any benefit, as I'm already following all the guidelines.
But it would be nice to get priority slots with the supermarkets so my hubby doesn't have to go out and put us at risk, so I registered with the gov website and stated I hadn't received a letter but gave my NHS number, but I still don't understand how the two tie up, ok I might get a letter then, what what about the supermarket slots as they tell you to register with the government 🤔😁 stay safe everyone 🙏
I had a video with information sent to me by text. I have found out that there is a government registration for vulnerable at Gov uk. It is simple to register and list all conditions applicable. You need to put your nhs number. Just took a couple of mins to do. I had an online order from Morrisons and had a problem completing the order and had to ring. Doing online with them for 6 years but due to the situation can’t get another slot. I asked lady who sorted my problem out about being one of the ones that have got to stay in and have got no other way to shop. She informed me they are working with the government and it should be up and running in a couple of weeks with all the supermarkets. Should be advertised on tv and the supermarket websites and register with gov. Uk. Just register and see what happens .
All stay safe and keep well
I received an email from my doc. Telling me to isolate for 12 weeks. I’ve Reg on government site. When my gp told me. I did message my nurse but no reply that was two weeks ago. I got an email yesterday from Sainsbury’s it said they had received a list of ppl who in vulnerable group from government and would be writing to all those ppl with a booking spot for shopping. So I’m waiting. 😷
I do not have RA but I do have OA in knees back and worst neck which causes
Radiculopathy which required Morphine. I have Angina, a Leaking Heart Valve and a history of VT and active AF....requiring a plethora of heart medication including the toxic Amiodarone which has destroyed my Thyroid due to I can't have other regulators because I have COPD. which requires oral steroids and times and inhaled steroids day and night every day.
Above all I have a shadow on left apex which has spread to Right Apex and after 2 X Rays. 2 CT Scans and on PET SCAN they are unsure what is is and have to have a further scan in June,
There is more like CKD Stage three and other assorted not quite as bad goodies.
My point is I have had no letter and I doubt I will get one because except for steroids I take no
immunosuppressive suppressive drugs We shall see,
If you ring your GP he will print the letter off for you.
I was told that I would be receiving a letter, so it must be on its way.
Thank you for replying Hellenne1, I think that the answer why so many have not received their letters is because of the sheer volume of printing, enveloping and posting these letters. GPs and Consultants are so busy without having to envelope thousands of letters.
I note that the MP Boris Johnson is sending a letter to everyone re the Corona Virus - Is this really necessary? - does it serve any purpose? - I think not.
However the letters from our GP's and Consultants are proof that we do have chronic diseases and may well need additional help.
As someone else has commented, what a shambles - we'll see what the postie delivers tomorrow. Take Care.
To the best of my knowledge the people who are classified as the most vulnerable include people with RA if they are taking biologic drugs, and also are over 70 and completely alone with no means of getting any shopping or their usual meds from chemits, because they are in the shielded group. There is a sheet you can access which shows how you stratify your risk on our website in the COVID-19 area. If you are on DMARDs only, and are otherwise well with no other co-morbidities or special circumstances (such as working for the NHS or caring at home for an elderly relative who has underlying health conditions), I don't think you will get a letter. I am in the shielded group because I'm on biologics, I'm 70 and have other co-morbidities, but I do have the ability to get food as my husband is going out, my children can help and we have great neighbours who can help and at the moment I have everything I need to be able to remain at home, not going out. So in spite of that I don't expect to receive a letter. It is confusing admittedly but hope that is helpful
National Patient Champion at NRAS
I haven’t had one yet an I’m on biological injections for RA. Also my husband works for railway an has to go in. As an essential service. They’ve not been supplied with any hand gel masks or overalls. Also their office is less than two metres squared with three people in it. The only way he will be able to stop working to shield me is to receive this letter as proof
Hi I had my inflixamub infusion on Fri. Spoke to the consultant and he said that I need not self isolate but must do strict social distancing. Also recently tested for MRSA and came back as colonised. However no treatment needed at present. Anybody else come back with that result. Take care everybody xxx
I actually am a care worker and signed off on Friday with symptoms. I called 111 who informed me to get the isolation note and to call and explain to my GP my condition.
The receptionist informed me ‘we don’t do letters’ but they deigned to get a brief print off of my transfer of care report. It gives some brief info of me having RA, but that’s about it.
I’m currently in isolation anyway, so I can’t really see what this print off will do for me.
I haven't received mine either as I also have Sle plus RA & more. I asked on Lupus page, but not many have received theirs either. I will have to see what happens as i am now only on Tramadol, Ranitidine ,Amitriptyline & inhalers, as Hydroxichloroquin was stopped last July because of retinal damage & can't take Azathioprine because it causes chronic Neutropenia. I will just have to play the waiting game.
Have three health issues which I thought should qualify me for letter yet haven't received one to date.
Managing as best I can but it's difficult to a. Get to shops, b. Queue when there (the wait at chemist was the most painful wait so far so i now take a small folding chair) and c. Get what I need when I get there.
The first members of the public to receive these were not from GP rooms - but an external data base - text i received from GP. Letters may still arrive this week. My brother received one as he has no immunity at all - genetic condition - and receives 3 weekly infusions of antibodies. Advice to him absolute self isolation - only open a window but do not step outdoors, use a different bathroom and bedroom to his wife and 3 teenagers, different kitchen utensils - and rigorous cleaning. Entire family have been self isolating for 3 weeks already. Hope that helps those that are still wondering if they will still receive one - and what the advice is. Stay well!!
Do all of things you have stated and have been advised to do. As Ailsa - NRAS the administrator has replied above. If we have someone living with us or neighbour who can go out and get our essentials and medicines, we will not get a letter. I don't think that this fact was mentioned on any website. We just have to stay indoors and let others do the running about for us. However if we are living on our own, we should be in touch with gov.uk, our GP or Consultant. Thank you all for your replies and hope we have got our answers from it. Take Care.
Both myself & husband have very low immune systems . He has Sarcoidosis ,which had damaged the heart and lungs & is on Mycophenolate . He got his letter a week ago .
I have R/A, CKD stage 3b MCTD and other things ,I'm on biological drug called Etanercept ,but despite my g.p meeting at the health centre telling me I shouldn't have been out as I was Very Very high risk ,I still not received any letter . I would normally say no news is good news ,but not this time . Lorraine .
It was from the rhumatology department and says important information to keep you safe from Coronavirus and the NHS has identified you or the named person you care for at risk of severe illness if you catch COVID-19
Goes on to say the safest course of action is for you to stay at home at all times and avoid face to face contact at all times.
Then other pages have the score chart etc and I score 0 for being on hydroxy alone.
So why send the letter, I just don’t understand!
To date I’ve still not received my letter but Dr.from the rheumatology department phone today to say I’m in the shielding group and she’d send me an email to that effect. I’m registered on the vulnerable list with the government but until they send my name to the supermarkets etc i can’t get a delivery slot anywhere. What do I do?
Like you Pamak I have also registered myself on the vulnerable list with the government and have telephoned my Rheumatology department to inform them that I have. So like you I am waiting for the government to forward my name to the supermarkets. This process is definitely not working. Our local Council does have a number to telephone if anyone is in a desperate situation. Age UK maybe able to help or give you advice. Thinking of you and Take Care.