Lupus & Coronavirus (COVID-19) - UPDATED 20/03/2020

[Paul_Howard]

Hi everyone,

I've just published some further updates to our article at lupusuk.org.uk/coronavirus

This update answers a couple of common questions we've been asked:

1. Why isn’t lupus specifically named on the list of conditions in the Government guidance?

2. Do people I live with need to self-isolate with me?

Your questions and regular feedback about the information we provide is very helpful as it allows us to improve clarity - thank you for being patient with us as we find some of the trickier answers.

If anyone is in crisis, please contact us on 01708 731251 or email [e-mail] and we will do our best to assist. Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.

[Milliecox]

These daily /frequent posts are really valuable thank you Paul

[steve61]

Hi paul,

unless I've missed it today, is their any financial help for people who are self isolating due to an underlying illness?

Boris told us to isolate for 12 week but worry £94 a week wont be enough for many people and will return to work putting their lives in danger!!

And is Lupus SLE definitely included in the governments list, I don't want my employer accusing me of blagging it!!

Cheers Steve

[fabwheelie]

Hello Paul_Howard

I've not had chance to check but I saw this. If this is true it could be a good idea to pin this link as it's information about SLE plus advice would cover others

“The Clinical guide for the management of rheumatology patients during the coronavirus pandemic” published by the NHS on 16th March 2020 clearly states that people with a diagnosis of systemic lupus erythematosus (SLE) are at a ‘high’/‘very high’ risk from the virus. See page 4 HERE.

Also thank you for all you and all others at headoffice , regional groups, the Facebook posse of groups etc are doing

Just one bit of feedback sometimes the links I'm clicking to copy paste, share elsewhere etc about Lupus UK advice for some reason sometimes go to an older version not the most updated ( perhaps we need the new updated one only available including a lovely easy link on the Lupus UK website

People not used to the Lupus UK website may need really easy way to say click this as it's not necessary clear

[Paul_Howard Partner LUPUS UK in reply to fabwheelie]

Hi fabwheelie ,

Each time we update the article, it is an overwrite on the same page - lupusuk.org.uk/coronavirus

To ensure that people have the most up-to-date version, they just need to refresh their internet browser.

[fabwheelie in reply to Paul_Howard]

Thanks I'm taking 2 days minimum recharging now it's been too manic this weekend

[fabwheelie]

I think this is that guidance

drive.google.com/file/d/1TM...

Unfortunately I've a family emergency and I'm having to take a day out from Lupus online stuff. My mum has breathing symptoms probably her longstanding issues and not COVID 19 but she needed A&E check and now home but in self isolation quarantine whilst I myself am now finding ways to support her but keep the 12 week isolation/ shield and protect myself as well

[steve61]

Hi paul, so do you think lupus sufferers will recieve a letter as they didnt mention lupus!! Still confusing, Steve

[Paul_Howard Partner LUPUS UK in reply to steve61]

Hi steve61 ,

I think there will certainly be some people with lupus who will receive letters. Just like the annual flu vaccine programme there will also be people who won't receive letters. The real question is whether these people are falling through the cracks or if clinical judgement has considered them to be at a lower risk. We're trying to address this with ministers. In the meantime, I'm contacting more leading lupus consultants for their clinical opinions.