The letter

[Pinkypie2018]

I know everyone is waiting on the vulnerable letter and whether we will get one or not. Just to say mine arrived today from my gp surgery and it was dated from last week. Post is extremely slow the postman was saying. I wasn't expecting to get one as I take methotrexate and sulfasalazine and I know sulfasalazine isn't considered. However I've had high blood pressure from a young age so I guess this has increased my risk. It's scary to have got it but I'm relieved too as now I've proof for my employer as they haven't paid my statutory sick pay yet. I have already been self isolating at home but I do need to be careful around my kids and husband. Take care everyone and keep safe!

[Ruffdemo]

That's good to know :-). I haven't had the letter yet but know I should because I'm on methotrexate and Imraldi and have bad asthma. I have a telephone appointment with my specialist nurse on Wednesday so if I don't receive one tomorrow I'm going to ask about it just to make sure I've not slipped through the net (doubt it). My employer has shut out anyway but I couldn't get any straight answers about pay if I need twelve weeks off.

[Pinkypie2018 in reply to Ruffdemo]

My occupational health told me I was entitled to sick pay, but 2 weeks later I still haven't received anything. It's good your off so you can keep safe.

[Buckybri]

I’m still waiting but it’s no good telling someone what u should be doing three weeks later . I understand it’s a busy time and things change , it’s a good job some people have common sense and do what these websites advise u . My friend at work was told today that he had to home and shield by the company nurse , I told him three weeks ago what to do after trading advice from NRAS etc but he didn’t act upon my advice then three weeks later the nurse tells him to go home

[Hellsgranny]

Ive got one today . I was diagnosed in december and take 20mg methotrexate and 200 hyroxy. Has made a huge difference and now much better. I so wasnt expecting to get this letter. Somehow found it really upsetting. Send best wishes to you all, youve all helped me so much

[Pinkypie2018 in reply to Hellsgranny]

To be honest so did I as I wasn't expecting it either. It's hard to shield when you have children that I need to look after and there so affectionate, so no more hugs or kisses for me.

[Hidden in reply to Pinkypie2018]

🥺🥺

[girli1111 in reply to Hellsgranny]

Sorry to jump in, but I take the same meds as you and wasn’t expecting a letter about shielding - I’m a key worker in school at the moment.... can I politely ask, are there other age or medical considerations in your case? Thanks

[Hellsgranny in reply to girli1111]

For me I’m 62 in good health , nothing else wrong with me as far as I know ! I did have breast cancer in 2007 but no further problems after treatment.

[girli1111 in reply to Hellsgranny]

Ok thank you,

It all seems somewhat arbitrary. I’m 50, same drugs, but assumed from charts I’ve seen that I won’t get a letter. I’m looking after children all day as a key worker, now starting to think maybe I shouldn’t be!

[Hellsgranny in reply to girli1111]

I was really surprised, had seen other reports and thought i dont take any steroids or anything else as long as I keep to social distancing it would be fine. Just bit interesting, when I was at my last hospital appointment about 4 wks ago I asked about being immuno suppressed because of the methotrexate. The consultant told me its the neutrophil and wbc count in blood tests that determine, if within limits you are fine. From this letter , apparently not! Keep safe

[Lolabridge]

I'm still waiting ...

[Pinkypie2018 in reply to Lolabridge]

My letter was dated last week but only received today, postman told my husband they are behind, so it could just be delayed.

[Lolabridge]

Yes my rheumy department admitted the last 3000 only just been sent out. When your surname begins with W you know you'll be one of the last 😟

[sensibleshoes]

Hi thanks for posting this. I’m on mtx and sulfalazine haven’t had a letter yet and tbh wasn’t expecting one as like you thought that sulfalazine wasn’t counted. Guess I will have to see if one arrives.

[Pinkypie2018 in reply to sensibleshoes]

After looking at all the charts last week that was posted I thought no I wouldn't be getting one ... so it was a little shock today receiving it. I thought I was moderate risk, unless it's to do with my blood pressure being high also.

[talulah14]

I spoke to my rheumy department today and was told they’re a bit behind and will be sending the letters out today. So taking account of the postal delays I’m guessing it’ll be towards the end of the week when I receive mine.

[Buckybri]

So what meds are u taking ? Mtx sulfasalazine

[Pinkypie2018 in reply to Buckybri]

Yes I take both and I take amlodipine for high blood pressure.

[Buckybri in reply to Pinkypie2018]

Same here mtx and a biological med ramipril and amtodipine , so I expect I’m due a letter , I thought I would of been alright because I hadn’t received one last week .

[Pinkypie2018 in reply to Buckybri]

Same as myself, after looking at the charts last week I thought I was moderate risk until the letter arrived today. Really wasn't expecting it, however I was already self isolating its just having to distance myself now at home from my family. Not easy with young kids around.

[Buckybri in reply to Pinkypie2018]

So what did they tell u ?

[Buckybri in reply to Buckybri]

To shield ?

[Buckybri in reply to Buckybri]

I wonder if different parts of the country are being told different things ? I wouldn’t of thought so but it wouldn’t surprise me .

[Pinkypie2018 in reply to Buckybri]

Yes I have to shield, there's a lot of detail in it so I hope my last reply helps.

[Jean-- in reply to Pinkypie2018]

Yes must be very difficult with young family around 🌸

[Pinkypie2018]

It's actually six pages long. It starts off by saying, 'we have identified that you, or the person you care for, is at risk of severe illness if you catch coronavirus. This letter is about how to protect yourself and how to continue to access care and treatment'. It states that you must not leave your house for anything for 12 weeks and if you experience symptoms to ring nhs 111 straight away. It gives you advice on how to social distance in the house: not sharing bathroom, bedrooms, sitting areas etc. Anyone else in the house has to support me by stringently following guidance on social distance. And to prepare a hospital bag just in case with a list of contact numbers and a list of my medication. And some useful websites if I need more information.

[Hellsgranny in reply to Pinkypie2018]

Would it be possible to just ask your advice, after getting this letter, its just me and the husband in the house and neither of us has been out for last 7 days. He is also not going out at all from now on, is this social distancing within the home really necessary as its just us . Thankyou for listening

[Jean-- in reply to Hellsgranny]

No I think you ok

I’m high risk due to meds enbrel and 67 and my daughter lives with me , she young and healthy but realised as I am , so called shielding she has to , so we stay home only go in the garden and don’t avoid each other , I’m hoping this is the way to be

Keep safe and sane 🌸

[KittyJ in reply to Jean--]

Jean, see the link in my reply to Hellsgranny above.

[Jean-- in reply to KittyJ]

Thankyou kitty

Think we doing it right , we both behaving as though both high risk and take no chances

Daughter has given up chance to see her fiancé to be able to stay safe with me 🌸

[Pinkypie2018 in reply to Hellsgranny]

I think you should be ok. Unfortunately my husband needs to do our shopping but he's only going to go out once a week now and to be extremely careful. So I've moved out of our bedroom and I've kept a bathroom just for me. But we've 3 young kids to care for so our household is busy. So it's impossible for me to social distance completely in my house. So it's just more hand washing for us and trying to keep my home as clean as possible. Kids are only allowed in the garden since schools shut, thankfully we live in the country so no one else around us. Hope this helps you.

[KittyJ in reply to Hellsgranny]

Hellsgranny If you are told to shield then yes you should. Here is the letter, it tells you all you should do if you receive it.

rheumatology.org.uk/Portals...

[Hellsgranny in reply to KittyJ]

Thankyou, that is the letter I have received and which I am asking about. My question was, as its only myself and husband in the house, not been out at all for over a week and not going out at all now, as all food delivered, he is also self isolating , do we need to keep separate , bearing in mind , unfortunately we dont have the rooms or a second bathroom. I am just a little confused and upset as I am sure everybody is. Thankyou for your reply,

[KittyJ in reply to Hellsgranny]

See the bit starting “the rest of your house of should support you”

All you can do is do your best, in the circumstances, with what you have. X

[Jean-- in reply to KittyJ]

I feel as though we should all wear masks

Unless you home , haven’t been out now for 11 days just in the garden and my daughter the same , it’s very difficult to get food but fortunately we have a small local shop that we can call and they leave us food by the gate and we can get by ?, but the state of the home deliverys from supermarkets are impossible , all booked up for weeks ahead

Anyway good luck to us all

As long as we do as you told I’m praying we be ok

My daughter has been told to work from home thank goodness otherwise I’m not sure how we would manage

We live in a very small bungalow , it makes me laugh when they say use separate bathrooms , en suites I guess they talking about

I’ve not had a letter yet ! Thanks for listening 🌸

[Pinkypie2018 in reply to Jean--]

Home deliveries are a joke there completely booked up. I've had to take my daughter's room so she has to sleep in her brothers room and my 'personal bathroom' is a tiny loo with a sink. We still need to share the shower and bath but I'll clean them thoroughly after each use. Just more cleaning for me 😊

[Fatty-Mcfatfat]

I’ve not had a letter yet. I’m going n methotrexate & Humira (not sure if I’ve spelt that right). I’m expected to have blood tests done within the next week so I can continue getting my scripts from the GP. Have no idea what to do?? Haven’t left the house for 12 days. Husband still going to work at a school. But make him shower and change as soon as he gets in. Am I being paranoid? Confused and scared of Sutton 😢😷

[Pinkypie2018 in reply to Fatty-Mcfatfat]

Your certainly not as it is a very worrying and anxious time. My husband finished work last week thankfully. Ring your gp for advice. There is a part on my letter that if needed they can do a house visit.

[Jean--]

I don’t want a letter !!

[MadBunny]

Still very confusing to me.I got a text from my gp surgery yesterday saying that they see from my notes I am asthmatic and to ring for a letter if I have been in hospital due to asthma in last 12 months.I would have thought they'd have known that I haven't.I wonder if its flagged up automatically by the NHS?No mention of highh blood pressure, atrial fibrillation and RA meds so I can only conclude I'm not in the category for a letter.Oh well-see what happens over the coming days.I'm still staying at home anyway just to be careful.

[JulesCurrie]

New to this chat group so Hi to all. So many mixed messages about what we should be doing. I am on methotrexate 20mg weekly and hydroxychloroquine 400mg daily for 5 days a week. Don’t know if I should expect to receive a letter. In general good health except not being able to do too much on a specific joint finding I pay the price afterwards!! Difficult times hate not knowing what we should be doing but I suppose we are all different ...

[Pinkypie2018 in reply to JulesCurrie]

First would like to say welcome! It's great for getting information and so many have friendly helpful advice if you need it. Yes it's very confusing and I think many others feel the same. A lot of charts have been posted so you can compare your risk. I have high blood pressure as well which is why I think I got the letter. But I've got it so it's complete shielding for me from now on. You could maybe ring your gp/rheumy if you need further advice, I think that's what other people are doing if they don't receive their letter.

[sensibleshoes]

So got my letter today. Just wondering if advice is different in wales? As following the scoring system I didn’t think I would be classed at high risk. Anyone know if welsh and English guidance is different?

[Pinkypie2018 in reply to sensibleshoes]

There is a lot of confusion about these letters. I'm in n ireland so it could be different to Wales and England.

[Buckybri in reply to Pinkypie2018]

I got from the nhs and also getting one from my rhumy doc

[Pinkypie2018 in reply to Buckybri]

You waited long enough to get one and now your getting two!