Confused.com

[Ronie23]

I’m just looking for the easy answer! 🙈 I have lupus. Take hydroxychloroquine. Should I be self isolating for 12 weeks? To get to work requires 2 journeys on public transport and that terrifies me! I know I’m not in highest risk group so won’t get letter. What do we have to do to let employers know if we don’t have the letter? I am NHS Scotland admin staff.

[Hellbell30]

I’ve just been on the phone to different doctors etc, and was told to social distance rather than self isolate for 12 weeks, which is impossible as I’m a support worker

[jeanette60 in reply to Hellbell30]

Hi. I'm also a support worker and. I am filled with dread every time I go to work. Stay safe.

[Hellbell30 in reply to jeanette60]

I’ve recently had a operation so have been off for 6 weeks, I was due to go back Monday but because of a bad flare up have got a sick note for 2 weeks,

I’m so worried about going back.

We are asked to work at different sites and this massively concerns me,

How are you dealing with this situation?? Xx

[jeanette60 in reply to Hellbell30]

Hi. We're just trying to do everything we can to social distance while working. It's not easy tho. Everyone feels very worried and there are quite a few of us with underlying conditions. Your doctor might want you to stay away from work Take care.x

[Ronie23 in reply to Hellbell30]

I read somewhere that SLE patients, regardless of what medication you take, should be self isolating ... not in the “guidelines” (not the Scottish ones anyway!) so won’t mean a thing I guess?

[Hellbell30 in reply to Ronie23]

Really?? See it says anyone with lupus should be, but there is now a scoring chart and if you score low it’s then

Social distancing which is kind of impossible 🤷‍♀️

I’m really stressed with all of this,

I’ve not long been diagnosed with lupus, and haven’t had any support or help!

[Ronie23 in reply to Hellbell30]

Yeah, it’s all very stressful. The scoring chart seems to be a bit ambiguous! The way I see it is that lupus means our immune systems are bonkers at the best of times but if you’re not on this chart then tough!! 🤷‍♀️

[Hellbell30 in reply to Ronie23]

I totally agree! My gp wasn’t the most helpful this morning and I honestly don’t know what to do for the best!!

A man from lupus UK was extremely helpful and understanding xx

[Ronie23 in reply to Hellbell30]

It’s good that at least someone is lol!! X

[Chanpreet_Walia LUPUS UK]

Hi Ronie23,

Have you discussed your concerns with your employer?

The guidance we have at the moment is that some people with lupus (well controlled, no other conditions and only taking hydroxychloroquine) wouldn’t need to self-isolate but should practice social distancing – this is different from the guidance we originally had which was that all lupus patients must self-isolate for 12 weeks.

It is a little confusing as advice and guidelines have changed several times over the last two weeks.

If you feel that you are at high risk and do not feel comfortable travelling to and from work at this time, you can try to contact your doctor and see if they can do anything about this i.e. send you a text or email which you can forward to your employer.

Take care, Chanpreet.

[Ronie23 in reply to Chanpreet_Walia]

Thanks Chanpreet. Easier said than done I fear!

[Froggie70 in reply to Chanpreet_Walia]

Hi Chanpreet and all on this post

I attached a link yesterday from my local health board NHS Lanarkshire. The ‘Implications for Rheumatic Disease Treatment’ is the important section.

nhslanarkshire.scot.nhs.uk/...

I know that this might not cover all areas but might help some.

There is one thing that is really beginning to annoy me now which is why there seems to be no uniform guidelines across the NHS and the length of time it’s taking to provide clarity for autoimmune disease sufferers. I understand that these are unprecedented times but we are now a number of weeks down the line and the stress of this uncertainty will be causing us additional problems.

Rant over and hope this helps. Everyone stay safe.

[Ronie23 in reply to Froggie70]

Thanks Froggie. Yeah, autoimmune disease seems to be very contentious! I was interested to read that it said those on milder immune therapy don’t need to follow full isolation but follow other general precautions. How do you interpret this in the way of work or indeed travelling to work on public transport? 🤔

[Froggie70 in reply to Ronie23]

Hi Ronie23. I haven’t spoken to my own Rheumy Dept but my Dad has neutropenia and at his last consultation a couple of weeks ago he asked about me and the consultant said that as I was travelling on public transport and working in a open plan office he would strongly recommend not going into work. Have you spoken with your GP or Rheumy Dept?

[Ronie23 in reply to Froggie70]

I’ve emailed them but had no reply yet which is understandable!

[Froggie70 in reply to Ronie23]

Let me know how you get on. Hopefully they’ll come back to you soon. It’s bad enough worrying about everything else without work problems on top. Take care of yourself.

[Chanpreet_Walia LUPUS UK in reply to Froggie70]

Thank you for sharing this helpful link.

Stay safe!

[Joni2011 in reply to Chanpreet_Walia]

That should be Methotrexate... Anyway, the controlling of my lupus was put on hold.

[Joni2011 in reply to Chanpreet_Walia]

Hi Chanpreet. Can I ask what is meant by 'well controlled'? I am on hydroxychloroquine but it only helps a few of my symptoms. I was due to start Methotrate in March, but postponed because of Covid.

[Flock17]

Hi. I have had lupus for over 30 years. Take hydroxy and fairly well controlled but with some issues now and again.

I’m classed as a keyworker (primary school) just coming up for two weeks ago I contacted my GP for advice and his reply was to repeatedly tell Me that I should be working from home and practice social distancing. I asked if I could go in and work away from others (eg doing admin in a room alone) and again was told I should be working from home.

So I am at home. My GP also added that it wasn’t up to him to tell me what I should do but that his advice is to work from home and I’ve taken that advice.

Are you in a union you can seek advice from?

Best of luck and keep safe

[Ronie23 in reply to Flock17]

Hi Flock, I just wrote a long reply to this but I think I hit cancel instead of reply!! 🙈

[Kevin53]

All employers have a duty of care. Wherever possible they should look at working from home. Attending work they must apply all the necessary social distancing support, all on HSE web site. With regards to vulnerable people they should allow flexible or reduced hours so public transportation can be used off peak. Good employers are already doing this. Best wishes Kevin

[Ronie23 in reply to Kevin53]

Thanks Kevin. I’m waiting for my manager to get back to me. Rail services here have been very much scaled back so are few and far between!

[Kevin53 in reply to Ronie23]

Let’s hope the manager is pragmatic. Best wishes Kevin

[Ronie23 in reply to Kevin53]

Well I work for the NHS so let’s hope so! 🙈

[Kevin53]

I’ll be in trouble for saying this. The NHS is brilliant yet their HR let’s the side down. Best wishes Kevin

(All views are my own)

[Ronie23 in reply to Kevin53]

I’ll be in trouble with you lol but I have to agree 😕

[Hidden]

My way of thinking: if I got Covid really badly cos of having Lupus/ AI then would I be lower priority for hospital bed and ventilator etc? If answer yes then should surely be told to shield not go to work! They (employers/ gov/ NHS) can’t have it both ways or we just become the canon fodder in this war against Covid.

[bru-no1]

Hi. I take the same medication for my lupus and was advised by my health centre to self isolate. Now I'm being asked to send in my letter from the government to work to self isolate. The table is very misguiding. I can be in as many as 6 houses a day with my job. Surely that's too much exposure for some one with lupus.

Phoning my medical centre for clarification on Monday.

[Ronie23 in reply to bru-no1]

Please let me know how you get on. I think having lupus is reason enough for self isolation regardless of what medication we take?

[biddy75]

Yes absolutely I’m NHS N IRELAND and I have to isolate for 12 weeks. U should have got letter from NHS

[Ronie23 in reply to biddy75]

Biddy, is your only medication hydroxychloroquine?

[biddy75 in reply to Ronie23]

For the lupus I’m also on mycophenalate and mepacrine

[Ronie23 in reply to biddy75]

I think you don’t get the letter if you’re taking hydroxychloroquine tho 😕

[BellaC79]

Hi Ronie23, I have MCTD and just yesterday received a letter saying I am in the 'at risk of severe illness' group dated 8th April stating I should stay at home next 12 weeks.

I am on hydroxychloroquine and wasn't expecting a letter but requested I work from home as soon as things started getting serious in UK.

I have been working remotely from home past 4weeks.

My letter states this is proof for your employer.

I hope you got one too by now?

[Ronie23 in reply to BellaC79]

Hey Bella, no, I haven’t had a letter and unfortunately I can’t work from home. Is hydroxychloroquine the only meds you take for your MCTD? X

[BellaC79 in reply to Ronie23]

Hi Ronie23

Yes this is the only meds I take for MCTD, I also have coeliac disease and know you can have decreased spleen function with this. Not quite sure when i get offered the flu jab which condition it comes under for me.

Am thinking they must be sending out a new wave of letters. I am based in north west of England.

x

[Ronie23 in reply to BellaC79]

I am NHS Scotland, I’m not sure if the criteria is different here 🤷‍♀️ What I do know is the thought of getting on a train to get to work is terrifying! 🙈 X

[BellaC79 in reply to Ronie23]

Might be worth a call to your rheumatology department. As it was this department that issued my letter from Manchester royal infirmary.

I am seen at Salford royal for my coeliac.

Wishing you all the best and try to keep safe while you travel. Each day must be very stressful if you are still at work during this lockdown? x

[Ronie23 in reply to BellaC79]

Thanks Bella, you take care too. X