Hi Has any one else just on Enbrel and still received the letter telling you that you are extremely vulnerable and to stay at home.
I really didn’t think I would be receiving this letter? Is it because of the disease alone or because of the drug we take?
I put name forward a few weeks ago to be a nhs volunteer and now I won’t be able to.
That’s interesting! I am on Benepali and Hydroxychloroquine but have read the ( several) versions of lists and charts on the scoring system taking into account medications and underlying conditions but I do not fall on the highest level “ shielded group”. I have assumed I will not get this letter. How has your letter actually described you ( sorry to say it that way...) and what are the guidelines for you. Are you in England? I have played it safe and not gone out ( apart from daily dog walk to our local Forest). I live with my daughter and husband and made sure they are very conscientious at hand washing, I regularly disinfect handles, switches and tv remotes. I don’t feel I can do more than that!
Hi yes I am in England the letter says ...
The NHS has identified you as someone at risk of a severe illness if you catch covid 19. Because of your underlying disease.
It goes on to say to stay in for 12 weeks from that day and if you can stay 2 metres apart from anyone in your house etc
Another part of the letter says if your disease is in the group moderate-severe and still on immunosuppressants you are in the highest risk group.
There are a few different letters going out it seems. Some just tell people they’re vulnerable. Is this telling you to shield? If so that is strange, I’m on mtx and biologic and others that don’t count but I’ve not received a shielding letter.
I've also had a shielding letter when I wasn't expecting it. I'm only on Methotrexate (and Hydroxychloroquine which doesn't count) but did have a flare and a steroid injection recently so maybe that's why? It seems as if the different clinics/health authorities are using different criteria which is annoying.
I haven't volunteered but I have been helping my husband and his brother care for my mother-in-law who is endstage (not Covid related.) Otherwise I'm being sensible (not going into shops, social distancing, hand washing) but I'm certainly not planning on shielding from my husband. I have had to give up on the idea of volunteering to help others but in the final analysis I think that we each have to do what it right for us personally as long as we don't behave irresponsibly and put others at risk.
When you received your letter was there pages attached to it explaining if you have IBD and loads of information on that .. which confused me as I don’t have that?
Yes Highest Risk “shielding”
The NHS has identified you as someone at risk of a severe illness if you catch covid 19. Because of your underlying disease.
It goes on to say to stay in for 12 weeks from that day and if you can stay 2 metres apart from anyone in your house etc
Another part of the letter says if your disease is in the group moderate-severe and still on immunosuppressants you are in the highest risk group.
I still don’t understand this ‘stay two metres from everyone in your house.’ Surely, this would only apply if others in your house were going in and out? I’d those in your house are also self isolating- not leaving the house at all- I see no reason to be distancing?
I don’t know if you saw my post the other day, but I’m on hydroxychloroquine alone and I got a letter.
They said to me the hospital sent them out to everyone one an an immune altering drug but that I’m considered low risk for complications as when looking at the scoring chart I get 0 points
So I just have to social distance the same as general population. I work in Asda so this was good to know as I feel I am helping people get their food.
I looked at the list but cannot see enbrel on there and I don’t know much about it.
It states one immunosuppressive medication biologic/monoclonal or small molecule immunosuppressant score 1 which is maintain social distance not self isolation
However I think you should do what I do and call secretary to ask about your specific case.
Let us know how you get on.
Great you want to volunteer - what a star 😊 hopefully you still can in some way, but got to look after yourself too!
Hi
I think maybe it might be as my disease is classed as severe RA and not mild. Where did you do this scoring chart?
That's interesting that you phoned them and were told that. Can I ask if your letter was addressed to you personally? Mine was and was from the Rheumatology dept. I hadn't considered ringing them as I thought that they'd be too busy and it would be only for personal reasons really as I'm already working from home.
Well done for going above and beyond and helping to keep the food supplies coming 👏💐❤️
Yes mine was addressed to me personally it has my nhs and hospital number on it.
Thank you, I pick online shopping and it’s been a nightmare. I go in at 4am at the moment, some are going in at 2am but my RA while under control still makes me too tired, I’m going it at 4 and napping in afternoons 😂
The secretary for the rhumatology dept was not too busy. Give it a go!
I cannot find you post from the other day?
It was a very brief reply anyway, in response to someone else’s post, I can start a new thread and attempt to post a photo if you want to see the guidance included in my letter, but sounds like you’ve contacted the hospital which is the right thing to do.
I think others have previously posted similar guidance anyway.
Hope your doctors gave you clarity x
Are you over 70? Do you have other conditions - asthma, diabetes etc as well as heart or lung disease?
And is it the shielding letter, or just the general social distancing stay at home one?
But essentially it is your decision. I am on Enbrel and MTX so am just applying pretty strict social distancing, but consider that is enough for my individual circumstances.
And you can still volunteer for phone calls.
No I am in my 50’s and yes it’s a shielding letter and maybe because my disease is classed as severe. Yes I will definitely be up for the phone calls at least it’s a little something I can give back.
Yup, mine is severe too. But I can do things outside the home whilst avoiding people so I've opted for that. To me the letter is only necessary if you need to for employer or to access help. Otherwise common sense applies.
I received a generic letter with my name on. But according to my GP I’m not at risk. Letter came from rheumatology department.
I’m taking benepali (embellished) and methotrexate aswell as a lung condition. My partner is over 70 and has diabetes but not received anything
Confusing isn’t it.
Do you have lung problems...if you do your doctor is probably being extra cautious?
The letter came from my hospital so I am assuming it’s from rheumatology. A few years ago I did have a bit of fluid on the bottom of my lung caused by my ra medication but my last scan 2 years ago showed it had nearly gone, and my lung function test was really good.
I’m not certain how this is working.
I am in methotrexate, leflunomide, embryo and have asthma and ground glass in lungs and yet, have not received any letter.
I did however decide that I would be in the higher risk group and therefore would be isolating for the 12 weeks.
The letter might prove helpful in terms of supports that can be accessed but I don’t need it to tell me to do the right thing.
Not sure if I’ve fallen through the cracks, or not?
I'm in Wales and recieved my letter from the rheumy department last week. It looks like a letter that's sent out to all people thought to be at risk. It just tells me that I'm in danger of becoming seriously ill and to self isolate for 12 weeks, plus a long list of do's and don'ts.
Now seeing that I have RA, a serious lung condition, take baricitinib and had a heart attack, albeit many years ago, I was sort of expecting one of these shielding letters for people who are extremely vunerable like Deniseelk mentions in her post. Guess I must be at lower risk than I thought, which is good news..................... not! 
I appreciate it's a difficult time, but once again there seems to be a lack of clarity that has plagued this crisis from the very beinning. Thankfully I've relied more on my own common sense and instincts rather than wait weeks for advice or letters from the powers to be to tell me what to do.
Rant over. Come to think of it I haven't had one for several days now, think I need to get back on track otherwise I'll also be at risk of going stir crazy!
Hi Julie 1908,
I have not received the letter, I am 73 have mild asthma inject Erelzi ( Etanasept and medication for high blood pressure. I really dont know our they decide who gets the shielding letter. Upon my own decision I am self isolating and only go out for my hours walk daily obeying the 2m rule. My wife and I walk our next door neighbours guide dog as she is not well and unable to exercise her dog. We love walking her, her name is Kali a black Labrador.
Keep safe & well.
I'm 74 next month on Methotrexate, Hydroxychloroquine as well as other medications for Kidney impairment, blood pressure and asthma. haven't had any letterer or contact from GP.
Did sign up at government website re vulnerable, have received email from Asda giving me priority pass for online shopping as they have been informed via government that I need help.
However I normally shop at Tesco when I rang them to inquire if I was on their list from the government they informed me I wasn't on their list.
How I can be on one list but not another beats me.
Just had my letter. Wasn’t expecting it as just on mtx and sulfalzaline so according to the scoring criteria not in the high risk category. Feeling a bit confused now as am providing support to my parents who have also had a letter due to copd.
Just had my letter. Wasn’t expecting it as just on mtx and sulfalzaline so according to the scoring criteria not in the high risk category. Feeling a bit confused now as am providing support to my parents who have also had a letter due to copd.
Was it a letter to tell you to shield?
Yes 12 weeks of shielding.
Just rang my nurse helpline to get the numbers for blood forms and prescriptions ready for when I need them. Interestingly the message has changed (although you can still leave a message if you need to speak to a nurse) and says that they're sending out shielding letters to ALL patients on long term medication - so that explains why I got a letter. So this proves that different departments are following different criteria as we suspected....
Personally I'm relieved as it means that they hadn't picked me out specifically because they have seen problems on my records which I wasn't aware of; I think that they're just playing extra-safe.
I phoned Rheumatology today and asked if the letter had come from them and she said she would get someone to phone me back and my actual consultant phoned me. My letter did not come from them. 🤷♀️
No letter.
The letter
Who is getting shielding letters this time? 
NHS category for RA is high, does that mean we are in very vulnerable category and will get the letter?
