I feel this is getting more confusing by the day and putting unwanted stress on us. Ive had a questionnaire from work that we all have to fill out on if we can go back to work and if we would feel safe i had the txt last week about being high risk and to shield until end of june was the first i had heard tho for 7 weeks. One of questions is have you had a letter or txt to say you are vulnerable and need to shield for 12 weeks then gave a list of what comes under that but immunosurpreasants wasnt on the list and they said they will do checks to make sure we are telling truth about the txt, i went on the nhs website and its changed since i last went on theres two lists now high risk clinically vulnerable which is cancer and what not then moderate risk clinically vulnerable which has a list of certain things which now puts me in that category but my GP apparently has me down as high risk even tho she never said anything to me im not sure her if my store will be one to open we havnt been told yet but if it does id like to know i was making the right decision if i was to go back in and if i cant i need to make sure i have proof my store i work in is VERY small so huge changes would have to be made i dont know if they would make much change as it would mean ripping alot of the store out. I thought getting the txt clarified it for me and now im all confused again. Think im going to have to call my GP tomorrow see if i can get a proper answer as i rung the hospital last week before the txt and she said i only have to keep 2m apart why does it have to be so confusing haha. Sorry i just needed a bit of a rant haha
Confused: I feel this is getting more confusing by the... - NRAS
Confused
If you received a txt advising to shield that should be proof enough surely. I agree it's all very confusing and stressfull.
I thought that im just worried i think that if they do a spot check will it say something different elsewhere as on the list they have provided immunosuppressants isnt on the list. I was already off for 7 weeks before i got the txt due to closing the store. It says you should get a letter but had nothing yet only the txt and the nsh website says you wont get one as you dont need to stay at home. Such a confusing time in more ways than one haha
As the doctors learn more about the disease I think things are changing in how they view vulnerability. And it still isn’t consistent!
The latest gov’t guidance has the extremely clinically vulnerable (cancer etc) considered high risk, and then the clinically vulnerable who are put as moderate risk - eg over 70 and so on.
But that’s far too crude a measure to me...
Did you actually get a shielding letter? As the texts were much more general I think and went to loads of people.
Just the txt so far it said i should get a letter but nothing yet only txts saying if you need help with things to get other people to do them and if you are sharing a house use separate towels and things
Same here.
Gp, physio and Rheumy appointments are over the phone no face to face appointments as I’m high risk ??
My txt says high risk but the nsh website says different i thought when i got the txt i finally knew what to tell work as they was already getting ready to re open way before boris’s speech on sunday now im back to square one on what to say to work
I could just scream !!! It’s a mess
It really is especially when some people still work. If i worked ina big store i would be fine id have no issue with going back by the 1st june but i work in a very small shop which was very tight to move around in before the pandemic as we have alot of gondolas So unless they remove half our equipment it will be a push to keep 2m at all times
Other people have said that there was a text that went out that was general alert to explain what people might have to do. But was not actually directly at and specific to the person who received it unless they got the follow up letter. So very confusing!
I have the txt but no letter yet ive been checking everyday but nothings come in the post
Well my OH got a text, and we live in France and he hasn’t been back to England for 5 years!
Well I live here & I’ve still heard nothing....except for being asked if I want a food box- so I must be on a list somewhere!
Just plodding on being sensible...thankfully retired so no big decisions to make.
If your Doc says high risk can you ask them for a sign off letter/cert to cover you as well?
The Govt have back tracked on the rules for 70s and over. When all this isolating was announced back in March, the PM said that 70s and over should stay home (much like the vulnerable), but now he's saying that he never said that & that they could go out if they're healthy. There's lots of confusion and I for one was & still am confused. I was advised by my employer not to go to work due to being in the vulnerable group (this was 17th March). I received a text, where as a work colleague got a letter. I phoned my med centre and they weren't sure who was sending out the letters. A couple of weeks later, I did receive a letter from my hospital. Looking at the date, I should be returning to work on 1st July. The PM's speech on Sunday completely threw me. I'm not in the critical list, but am on DMARDS & have mild asthma. My employer sent out a group email asking who was comfortable with returning to work on 1st June. Having lost a brother to Covis-19, I am reluctant & explained that. So I have no idea...should I go with what my medical team say or the PM?
I’ve had a text and a letter stating I’m extremely vulnerable. My GP says that is due to the number of immunosuppressive meds I have had in the last 6 months. My drug score is 10.
It’s all a muddle but my advice would be to shield for as long as you can
Emma do contact your GP. Some letters are only just going out. My primary care records did not show in on Rituximab and I had to ask my GP to rectify that. Once she had done that I got two more official shielding letters. (Because I’m on Rituximab and on more than 5mg Predisnolone daily so I have a weakened immune system so shielding advised). One letter was from her (GP) and the other from my Rheumatology dept.
The latest advice on who should shield (updated 5 May) is on the gov.uk website. It lists all the Shielding qualifying categories and people on immunosuppressive therapies is listed under number 5. If there’s any query by your employer direct them to that document.
No 5 is this
“People on immunosuppression therapies sufficient to significantly increase risk of infection.”
Which I don’t think includes MTX as it only slightly increases your risk of infection.
DMARDs are immunosuppressive and immunomodulatory agents and are classified as either conventional DMARDs or biologic DMARDs. Commonly used conventional DMARDs include methotrexate, leflunomide, hydroxychloroquine, and sulfasalazine.
Of the conventional dmards only MTX has a immune compromising effect, and it is not severe. The others don’t. Obviously some individuals are more sensitive than others
My brother only takes methotrexate but he has a shielding letter. It's a right mess.
Yeah i think i will have to call today. I rung the hospital last week because work had already said before the gov speech on sunday that they are preparing to open some stores and i needed to know if i could go back in as i work in such a small store and all the charts ive seen say different one says low risk and another says shielding as ive had major flares in the past 3 months she said i score a 2 which is high risk so just social distance but she then confused me because she asked if i could work out the back so im away from everyone i said no as i work in a clothes store i have to be on the shop floor for all of my shifts so she said just stay 2m away so as you can imagine that confused me as she said i dont need to take extra measures then she sounded cautious when i said i work in a small store and mentioned me working away from people and then the next day i received the txt from the government
It is so confusing isn’t it and seems to keep changing too.
I would continue to shield if it was me. We have had a survey from work too which I have not yet completed as keep forgetting. 😊
My line manager has been great though and I am not expected to go into my office for a while to come.
My heart really goes out to anyone who is having this added stress on top of everything else.
I had a text today from my local council community Hub with their contact number if I need any help with shopping and getting medications. Up until last week I was classed as low risk based on my meds but just started a course of steroids and increased current meds as advised by rheumatology consultant so has changed things. I haven’t been going out as it is though as we seem to have a lot of people around me who have never followed lockdown rules. Goodness knows what it will be like now after the changes today with easing the lockdown.
No texts or letters as yet about what I am classed as now. I have been very lucky to have been able to work from home for the last 9 weeks and have been advised by my manager they will be keeping me working from home for the foreseeable future. I realise just how lucky I am.
Really hope you can get some clear clarification tomorrow x
I’m not surprised you’re confused. My rheumy letter and GP’s letter both told me to do different things. My daughter who is young and healthy, takes no meds has been told to shield and received the texts we’ve been getting. That’s how much of a muddle it is. Can you speak to your GP and see if they will give you a letter for your employer?
I think im going to have to call and see if i can talk to her i hate leaving messages with the receptionists 9 times out of 10 they always mess up what they pass on to my doctor. I have a feeling tho she will say im just classed as high risk as she hasnt sent me a letter and i got told by my nurse they was sending the letters out on the first week, the same week i was on the system as low risk and not high. The txt message says high risk and not vulnerable but tells me to stay at home until the end of june. Its more just knowing what to click on my questionnaire i have to do as the question says do you have a txt/letter saying you need to shield for 12 weeks because you have one of these wrong with you then it gives the list of cancers and transplants and what not but not immunosuppressants and i got the txt late so it would be 6 weeks i would be doing it for i just dont want to click yes i have a txt then them do a spot check and my doctor say something totally different and then them thinking im lying haha
My text says “the government are advising you to shield at home until 30th June” does yours not say that? If it does and they are saying they need a text as proof then surely that’s enough but I can see your dilemma as in the same breath they mention cancer etc. I would add extra info and attach a copy of the text. They do need to make it safe for you and your colleagues to be at work. I hope they can’t do that and don’t open just yeti.It’s a difficult situation for lots of people.
Yeah thats the txt i got. They have said only certain stores are opening and will be taking measures to keep everyone safe but they havnt said which stores yet so im just trying to be prepared as well incase they choose ours we have two in the same town the other is much more bigger and spaced out ours is very narrow and small people with pushchairs and wheelchairs usually struggle to get around because of all the gondolas crammed in, i just want to be prepared and sure i guess as i wont know what measures have been put in until we open and i go back in
Emma if that’s the text you received saying shield to 30th June it also says “you should have received a letter from the NHS to confirm this”. So if you have not had such a letter do contact your GP. Make sure the GP has a full list of all your medication including any supplied by the hospital (e.g some biological).
I just received another of this texts only 5 mins ago.
i must admit i wasd lucky i saw my specioalist in week 3 just before i would have to retunr to work and she gave me a verbal to shield . told my GP gave me a fitness to work note stating shielded for 12 weeks , i have not heard anything back from my company . i think it does depend on what company you work for . i was lucky . My personal feeling is get a note from your gp sned it in with the questioneer that will cover it
I had a letter from my rheumatology dept. telling me to shield, but as i have pneumonia and recovering from i consider i am high risk.xxx
We could do with better guidelines. I’m moderate risk so higher than the general public but not high shielding (although Rheumy says shield, GP says no need to).
I had to remind my GP what RA medication I was on! 🤦🏻♀️
When she updated my records to show Rituximab it triggered two more letters telling me to shield (as I’m also taking >5mg Prednisolone daily).
Are you sure your GP knows better than your Rheumy?!!! 🤔
Oh I’m going with my Rheumy. When I told the GP about the Rheumy letter he said check with the hospital but basically the government had told GP’s to check everyone on their books so according to his guidelines I’m moderate. On phoning the hospital there’s a answer phone (on the Rheumy extension) saying isolate but continue with the blood tests.
My Rheumatology nurse said I should be strict social distancing not shielding. Our team never sent letters just a text with a chart however I never received that text. That said I got a letter from GP at the beginning of April to shield for 12 weeks. Never had anything from the government until last week I started getting texts from them saying to shield too. Which is what I have done along with my hubby. He however is starting work again next week so thought I would try to clarify things so rang my Respiratory team ( I have lung inflammation caused by RA) on Monday to be told they are far too busy to do any phone calls etc & were never involved with letters.
I spoke with a different Rheumatology nurse who said yes I definitely need to shield so even my Rheumatology team can’t agree.
It’s a mess tbh. Thank god I don’t have the added stress of sorting out work as well. I hope you manage to get things sorted it seems everyone is confused over this x
Here’s a link to the guidance for your employer - you work in a shop? - about what they should be doimg
gov.uk/guidance/working-saf...
Yeah its a shop i work in so would be on the tills and working around the shop floor at all times. It would be a case of me having to be furloughed for a tad longer if they cant take extra measures im guessing its just a case of making sure the txt is correct as theres so many different theorys like with the over 70’s that have been told to shield from day one theyve been told to stay at home yet on the nsh site it says they dont need to shield unless they have any of the very vulnerable health issues it says stay at home as much as possible but if you need to go out do so just stay 2m apart
Well I had only had texts rom hospital with flow charts etc With the need decide yourself . This was March and April. Only had a letter GP Tuesday when I Went to have blood test . Says been identified as high risk . I’m on Methotrexate blood pressure tablets just had steroids course in flare said 12 weeks from letter .... I’d just use what contact you had best be safe then sorry . Hope you get sorted go with what your comfortable with x
You probably are not at much more risk than anyone else. I'm not sure why people who take an immune suppressant for RA think they are such high risk? Moderate yes as they are only slightly suppressed from the drugs.
As Emma as not told us all the medication she takes or whether she has other health issues she really should contact her GP for further advice. Surely it's better to be safe than assume the risk is insignificant.
Of course but immune suppressed people are not considered "high risk".
Sorry Cheylann but some are and I'm one of them! It depends on what medications you're on and other existing health problems.
Because I'm on a biologic and daily steroids that makes me very high risk and I have numerous texts and letters and an email confirming that.
I feel everyone is "high risk".
Underlying conditions make your risk of dying from the virus greater.
What are you confused about?
I’m not confused at all. But I’ve not been receiving conflicting advice in official letters, which is the problem Emma88 has.-
At this stage the medical profession are just assuming people on immune suppressants are high risk. They don't know enough about the virus yet except people with underlying diseases are more susceptible to dying if they contract the virus.
As for catching it everybody's risk is the same.
ive been told different things by different people my GP is the one who put me down as high risk not me i just need to make sure im taking the right precautions if i do go back to work as when ive been put on the medication im on theyve always stressed to me and given me that im at a much higher risk than anyone not on the tablets of severe infection and what not
It is confusing, isn't it - lots of different terminology being used for categorising risk.
Like you said, being on one DMARD or one DMARD plus hydroxychloroquine/sulfasalazine seems to put you in a 'moderate risk' category, which the British Society of Rheumatologists says means you should "self-isolate or socially distance at your discretion". It also says that this applies to "well-controlled patients with minimal disease activity", which throws another factor in, of course.
If someone's work situation makes it impossible to keep 2 metres apart from other people, I would think it's safer to err on the side of caution.
Hi All,
I have been involved in health and safety over the years. The company has a duty of care to all staff including Vulnerable and extremely vulnerable people and their partners. I have attached a link which explains it well. Your employer has to do an individual risk assessment otherwise risks breaking the discrimination and equality acts together with breaking the health and safety at work regs.
farrer.co.uk/news-and-insig...
I have no link to this company but feel they explain it really well.
Good luck
Thank you for the link. Some of these issues are coming up in my work so this enables me to think about it and respond more usefully.
I hadn't received any letter from my hospital, so I rang them last week. I was told that I was moderate risk due to methotrexate and a biologic, but we talked about how I could return to work (I'm a teacher) in a socially distanced role e.g. office based. I received a letter today telling me to shield! I phoned to query it as it was completely different advice and was told that they were advising all patients with sjorgen's to shield. I explained that I had a borderline secondary diagnosis and no current symptoms (all of which had been discussed before) and the nurse apologised, saying that the secretary had probably just seen sjorgen's on my file and sent me the wrong letter! I am waiting for the correct advice to be sent via email, but it does pay to double check.
Not what you're looking for?
You may also like...
Confused
Confused
Confused 😳
Confused and struggling
Confused and angry - not sure...
Feeling let down and confused
Is this RA or not. I'm very confused
New to here, confused and frustrated
Confused & in of your help
Confusing advice
