RA information received today shielding and covid19

[MandiS]

Hi all RA sufferers please see what I received this morning from rheumatology dept

[helixhelix]

This looks like the same thing that has been posted by others. But I guess at least your rheumatology dept got it to you eventually!

[allanah]

Gosh , that's a little late in coming isnt it, hope you already knew what group you were in from the posts on here !! ,

[AgedCrone]

I got that letter with the flow chart weeks ago & despite getting enough Brownie Points to need to Shield ...I have heard nothing further....except Boris’ letter!

Luckily I have kind neighbours who shop for me, as otherwise I have no proof to show any supermarket that I’m classed as “ Vulnerable” ...so fat chance in getting on any delivery list!

I suspect I’m one of many in this position.

But hey...I always liked the DIY Option!

[helixhelix in reply to AgedCrone]

If you haven’t got one and you think you should have the advice is to contact your GP or specialist. But if you don’t need a letter for work, or for getting access to help with shopping etc then diy works!

[AgedCrone in reply to helixhelix]

I don’t think I should have a letter HH .....I know I should have one....I have 5 conditions in the Shielding Blue Box on the Flow Chart! But I don’t need one.... & I know what I should do.

But TBh I don’t think there is any such thing as a list of well controlled vulnerable patients in many GP surgeries.

As I see it....my GP Practice ...8 GP’s.... have less knowledge of RD & probably of the letter they are supposed to send, than the local vet!

Ditto the local hospital rheumatology department.They are so overstretched they can often only see new patients after a year long wait.....so DIY is OK for me....but some may fall through the net.

[Pippy25 in reply to AgedCrone]

Hello AC, I hear what you are saying. I've given up on letters, lists and on line shopping and am finding my own ways being on my own and after 4 weeks just to do what I already know and that is shield. I do wonder just how accurate are these lists the NHS, GP's or indeed councils have. They have rung my (late) dad three times on his phone over the Easter weekend, leaving him messages saying he is classed high risk and as vulnerable and they as yet haven't been able to get in touch with him! Sadly to say dad won't be contacting them any time soon. I know everyone has their own set of circumstances and needs to deal with their own situation accordingly, but by the time everyone is contacted via letter, phone calls etc to tell them they are high risk/ vulnerable or do you need support etc, we are how many weeks in already. This virus certainly knows how to mix up life in all aspects. Take care x

[Otto11 in reply to Pippy25]

Can only agree.

[Biofreak in reply to AgedCrone]

You are not on your own as you suspected. 😕

[girli1111]

It’s all so confusing...... your chart puts me in a moderate risk category.... the table sent by my rheumy team last week puts me at a score of 1 point, and therefore only needing to ‘socially distance’. I feel quite frightened by all this now, and have now decided that I won’t be returning to my work in an infant school next week.

[MandiS in reply to girli1111]

I would look at the chart as it would appear that as so many have received it this would be the correct information.

Stay safe

[medway-lady]

It's been on her a few times and thought it was pinned now. Nevertheless thank you. For a real scare look up yesterdays FT Covid Tool for going into ICU. I'm not posting it as some might not want to know but those who do it is interesting although I wish I'd not read it.

[MandiS in reply to medway-lady]

Just looked at the FT Covid 19 Tool. Quite scary . According to it I would have a score of 3 my interpretation.

[medway-lady in reply to MandiS]

Your lucky I got 7 ! lol x But also got a letter with Nephrology appointment for Sept so must be thinking I'll still be here to need it. RA I can leave but not the kidney ones.

[AgedCrone in reply to medway-lady]

But on that scale I’m supposed to be extremely frail & need help climbing the stairs.....OK some days the knees aren’t so hot But I manage to clean said stairs & the three bedrooms they go up to.....so it looks like the age descriptions have been put together by some 24 year old who thinks once you hit forty you need to grab the Zimmer frame.

If you start believing charts like that you’ve had it .....do what you can do and enjoy your life as much as you can ......because one day you might actually be that bad!

[medway-lady in reply to AgedCrone]

I agree which is why I never put it in a post. So much is variable and I got 7 so hoping that they err on the side of caution. But does indicate some overall reasoning even if it isn't great. Horrid for doctors to have to make decisions isn't it. My sister said that her hospital is ok for PPE but her hands are bad and the local church is sending hand cream by the bucketful. She said some is really posh! and it's hard but she's not on the ICU so praying she stays safe. I'm intending to get out of this with shoulder length hair and still trying to get hold of real yeast. We have nice weather and that makes it easier but the hubby is looking for things to creosote as done the shed and bench, but the fence is huge so that'll take him few weeks. lol xxx

[AgedCrone in reply to medway-lady]

Don’t stand still too long then ml...creosote don’t ‘arf sting!!!

But ‘twas always thus that paitents who would only suffer more from physical intervention than being left alone ......are well nursed & often rally round and confound senior doctors.

But I am staying well away from hospitals for the present......no point asking for trouble.

[medway-lady in reply to AgedCrone]

How did you find out that it stings ? the mind boggles.lol xx

[AgedCrone in reply to medway-lady]

I have creosoted a few sheds/fences in my day!

[Ssmart in reply to AgedCrone]

I turned 40 one week before all this COVID-19 kicked off in the UK

roll on being 41 😂

[MandiS]

Thank you I hadn’t seen it before today but late in coming already been indoors for 5 weeks

[Hidden]

Well I've had the letter from NHS, one from Goverment and one from Boris, all saying I should be shielded. But nothing from Rheumatology even though I have RA, Vasculitis and Osteoporosis. You know what, I don't think I will get one anyway.

[MandiS in reply to Hidden]

Dears I never received a letter from NHS saying I’m vulnerable only this one from Rheumatology which shows I should be shielding

[MandiS]

Just called GP about NHS letter they checked records and said I’d been missed off the list she has now updated. Good thing I’ve stayed indoors for last 5 weeks.

[Hidden in reply to MandiS]

It certainly is MandiS. My GP and Rheumy obviously don't care about me. 🤔

[AgedCrone in reply to Hidden]

Tbh I don’t think NHS England have distributed a definitive letter to Hospitals & GPs setting out who is responsible for what....ditto the rest of the UK......especially nobody has thought how to deal with the sick & elderly in care homes as is now very evident.

Even if they had...every GP practice will presumably have patients with every condition needing to take special action, on their patient list....so just imagine the look on the Practice Manager’s face when confronted with the task of working out how to locate those patients.

Obviously on this site we are mainly interested in RA/RD....but look how many forums there are on HU........each of which needs information relavent to their condition.

So as we have a modicum of common sense between us.....we are all just coping as best we can.

Not perfect......but at least there is information available if we look hard enough......look how many answers people have found here!

[Pippy25 in reply to AgedCrone]

So true AC.

[Eiram50]

Going by this, I should be shielding fir 12 weeks and yet, I’ve had no letter- from anybody?

[MandiS in reply to Eiram50]

Call your GP I just called them and they advised me that they will now add me to the list I had not been added by their practise manager hence not received letter from NHS they did advise me to shield once I told them about letter from Rheumatology

[Eiram50 in reply to MandiS]

Will do

[Gnarli in reply to Eiram50]

Me neither. Well, nothing useful like the Boris letter but I don't care. I shall take all appropriate steps, keep washing the hands and avoid everyone except Himself ('cos he lives here).

[Eiram50 in reply to Gnarli]

Me too jan

[Gnarli in reply to Eiram50]

We know what to do and we know how to do it don't we?

[Eiram50 in reply to Gnarli]

I’d say so. Just a case of getting in with it and getting through it x

[Pippy25 in reply to Gnarli]

I think that's all we can do.

[Hidden in reply to Eiram50]

I've had three different letters, all saying I should be shielding. Which is confirmed by the chart on NRAS. But where are my priority slots with Tesco online? So tired of sitting up until midnight to try and trap one in my net. No food parcel which I was promised either. 🤔 🙄

[Eiram50 in reply to Hidden]

It does seem very disorganised. I was reading that the shielding letters in Wales, were sent to the wrong addresses!

[Pinkplum]

Thank you for posting this , according to it I should be shielding. I had thought I was just to strictly isolate .

[MandiS]

I think the advice has been updated as one flowchart from several weeks ago just said I was low risk this now says I should’ve shielding

[girli1111 in reply to MandiS]

Yes, this looks similar to one distributed before, but looks to have been updated

[Dodo1943]

I noticed the changes and although I was already practising self-isolation I’ve now been moved up to high risk category on age and Methotrexate combination.

[orange33]

Haven't had letter and I don't expect to get one. I asumed I was high risk anyway du to the drugs I take. Hubby do the shopping now but still a risk! Keep well.

[Moremagic123]

This is helpful, at least your Nurse has sent you something, all they’ve done for me was cancel my appointment until further notice. Take care, keep safe

[Mr_Judge_Benny_Hinn]

It's a complete shite show! I an't isolating myself for 12 weeks...

[colindgreen]

I'm 44 in good health and been loosing weight safely; disease is active and I have regular flares. I take hydroxychloroquine and have had a steroid injection in last 6 months. Main disease activity is hands and then knees.

I received a shielded letter early on, which contradicts this flow chart.

Apart from walking my two dogs, I have been on total lockdown, not seeing anyone or letting anyone inside, with everything delivered. I worked largely at home prior to this and now don't leave house.

Shielding in this was has given me comfort, as I control my environment.

[JFlay in reply to colindgreen]

Hi Colin, I'm 59 and in good health, been on hydroxychloroquine since last August (after failing with MTX) my symptoms are coming under control now. I haven't had a shielding letter, have had a letter and chart similar to the OP to work out my own risk which is strict social distancing. In fact I'm doing much the same as you, dog walk and little else!

The advice is all a bit of a jumble 🙄

Take care and all the best.

Jo

[colindgreen in reply to JFlay]

Thanks Jo. I am fortunate to work from home and be able to shield. My parents and my sister are required to shield; so the choice to see each other has been removed. We are content with that.

Working at home has kept me occupied as do the two dogs.

Stay safe.

[Angjoplin]

Thanks for posting.

I've not seen this before and haven't received it myself.

According to this I'm high risk but I've had no shielding letter from the government.

I assumed I was moderate.

I still have to go shopping and will still have to go back to work. So I suppose it makes no mind, but it would be good if they all sang from the same hymn sheet.

[ABwn]

Hi folks I haven't received a letter from the NHS but I did receive an email from my local supermarket to say I was on their vulnerable list and they had allocated delivery slots for us. Apart from that I was using my common sense and keeping my distance.

[Plumcrumble]

Thanks for sharing, I haven't received anything yet, I take leflunomide and 3mg of prednisolone, just under the 5mg as written, I've been shielding anyway, it's a real pick n mix 😁💕💕

[Jamesmum70]

This just confuses me more as it isn’t the same as the information provided on NRAS or Versus Arthritis websites, nor what my rheumy told me! This suggests I shouldn’t leave my house but all the others say I can social distance? I don’t want to be ‘confined to barracks’ but who do I believe? 🥺

[KittyJ in reply to Jamesmum70]

It’s totally confusing, even different hospitals give differing info. According to this I should shield but my hospital has a very similar looking chart and says I should do strict social distancing. This is why we each have to make our decision ourselves, based on our knowledge of our health and meds.

[Jsartbtb]

This flow chart is dated 27th March. If you Google 'nhs' and the title from the chart, you can see a later version dated 31st March. All very confusing! Stay safe everyone.

[juliejswift in reply to Jsartbtb]

Yes it has changed slightly now. First chart shows my daughter as high risk but updated chart end of March shows her normal risk. This is very important point thank you. Makes a difference between her working and receiving a monthly salary or not working and trying to claim benefits!!

[MadBunny]

I started self isolating and practising strict hygiene at home on 23rd of March as, in the absence of any useful advice, I decided myself that I was likely to be high risk . I appreciate that initially it was a very unknown situation and that things change rapidly, but I felt I should use common sense. It was only a week ago that my GP contacted me to tell me that I should be shielding (still no letter though), not just because I'm on a biologic and mtx but have asthma and take high bp medication.

I

[Finnbert]

I saw this post about an hour before my GP phoned me to tell me that I will be getting a letter as on biological and methotrexate. He explained that the first round for the 1.5 million shielded has been put in place they are now 'swooping' again and if you are taking methotrexate you come into the shielded category. He was only informed of this yesterday. I am very lucky I have an excellent relationship with my GP and he was chuckling about my response basically using basic language😄. I have always wanted to carry on my life as actively as I possibly can so I have been walking over fields and barely seeing anyone and those I do on rare occasions maintain more than a 2 metre distance. I haven't been shopping but had deliveries from our village shop. It would appear that I can now expect a food parcel! Ho hum at least I have a garden but I won't be self isolating from my husband because he does most of the cooking! I feel comfort eating might be coming to the fore!!!

[juliejswift]

This is so helpful thank you. My 18 year old daughter is on biologics for juvenile arthritis and she has not received a shielding letter. I tried calling the hospital but they send a return e mail leading you to the government advice. I called the doctors three times and they say the list is nothing to do with them and they can’t help.

It just says’ if you are taking immunosuppressants strong enough to lower your immune system’

She continues to work as she is essential staff. This is the first piece of communication that shows she is at high risk!!!

Thank you 🙏

[Ferret18]

Thanks for posting this MandiS

I’m the same as girlie1969 - according to previous communications I was only supposed to be socially distancing but this clearly states that I should be strict social distancing and not even going out for exercise!!!!

I haven’t been going to work and I’m lucky that I can work from home, although bit of a battle with my manager.

But not sure I will do the no exercise outside the home - fortunately I live in a remote area and therefore don’t see anyone close to when I go out on my bike.

Thanks again

[lucymead]

I was given this information Verbally by the Hospital when they had to cancel my first ritixamab infusion. I am not to go out at all .Then my GP foned and said the same thing.

[MandiS]

***UPDATE*** if you type in nhs guidelines for social distancing there is a newer version online dated 31March which changes me from high risk to standard social distancing . Please check the one online as it is dated 31March and the one I received from Hospital is dated 27March thank you

[MandiS]

I just called NPH (my hospital) and asked them about the newer version online they had no idea about it they are going to discuss and call me back as they agree there is disparity in the advice between the version of 27 March and 31 March will be interesting to hear what the correct advice

[Leics]

I didn’t receive a letter until I spoke to immuno and they said highly vulnerable due to zero immune system also on steroids and baricitinib so I’ve been shielding for about 5 weeks now. Hubby sleeps in another room and we keep away from each other when he’s been out shopping (which he does for his mum and dad too) once a week it’s strip off clothes in washer all foods wiped down and any surface too. I did get a phone call from GP yesterday just asking for my next of kin details which I found amusing coz they already have it. On another note though my dad has just got a terminal cancer diagnosis which was quite a shock he lives too far away for me to see him but I keep in touch as best I can couldn’t travel 150 miles if I wanted too but his care is fantastic just coz he’s going to die they are looking after him. Well done NHS we’ve all got something to be proud of in this country.

[MandiS in reply to Leics]

Leics I am so sorry to hear about your dad I lost my dad to cancer I hope he is being looked after well.

I got a call from the hospital today to advise I must go with the flow chart from 27th March and not 31st which means I should be shielding all so confusing they told me not to use chart online dated 31March 2020. At least I now know I am definitely vulnerable and should be shielding .

Take care stay safe

[Sinderella]

Thanks for that info. I haven't received anything from my hospital.