Lupus and Coronavirus (COVID-19) - UPDATED 09/04/... - LUPUS UK

LUPUS UK

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Lupus and Coronavirus (COVID-19) - UPDATED 09/04/2020

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

We've just published an update to our information and guidance about lupus and COVID-19. Please have a careful read of the full article at lupusuk.org.uk/coronavirus.

We hope that this update will help to make the guidance clearer and easier to understand.

If anyone is in crisis, please contact us on 01708 731251 or email headoffice@lupusuk.org.uk 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.

22 Replies
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Thanks Paul, you’re doing a brilliant job. Saw the government are adding to small charity funding; are they going to include LUPUS UK in this do you know/ think?

Paul_Howard
Paul_HowardAdministrator in reply to Melba1

At the moment they haven't outlined the criteria sufficiently for us to know whether we might be eligible for some of the government funding or not. I'm inclined to think that we won't be, but we're certainly looking into it. Fingers crossed!

Paul, is there anyway other than direct donations that we can help LUK financially?

I use Amazon smile. Would it be worth someone on the admin team doing a post about Amazon smile? I'm not good at doing all the technical linking stuff but as many people might be ordering online it might be worth trying to highlight Amazon smile and how it could benefit LUK, every little bit helps?

Paul_Howard
Paul_HowardAdministrator in reply to happytulip

Hi happytulip,

We're encouraging people who aren't currently members to sign-up and we are extremely grateful for any donations during this time when so many fundraising events are cancelled and we are missing out on a significant amount of income.

Chanpreet_Walia is working on a number of ideas for how people can help to support the charity and I expect we'll be sharing some of these after Easter. May 10th is World Lupus Day and we've had to dramatically change our plans for it, but we want to involve people as much as possible. Keep an eye out for announcements in the next few weeks.

KayHimm
KayHimm in reply to Paul_Howard

Happy to donate. You are doing a great job of keeping people informed and updating recommendations as they change.

Paul_Howard
Paul_HowardAdministrator in reply to KayHimm

Hi KayHimm, that's so kind of you. Thank you. You can donate in any currency directly through Justgiving at justgiving.com/lupusuk

Hi Paul, thanks for the update. I have posted my UK GOV NHS letter and stressed people should recheck their own letter as some think that they are not allowed in their garden if they have on.

Hope I'm not being out of line but it does say that I can get into the garden or sit on the doorstep as long as the 2 metres rule is followed.

Jumper99
Jumper99 in reply to Boudica1

I’ve had a text message to say I’m on the vulnerable list but haven’t had the letter through yet. So I checked the NHS site to make sure I was shielding properly. I agree with you, we are allowed in our own gardens as long as the distancing rule is followed. It does mislead a bit where it tells you that you can open a window and sit by it but the garden bit comes later.

I had a 2nd text with some advice which included not taking my own rubbish to the bin but getting someone else to do it. Seemed a little odd but perhaps they noticed that I live in a flat so don’t want me in the communal areas like corridors. Luckily I have a ground floor flat opening onto the garden and I have an outside route to the bin store. Just wondered if anyone else had been told that.

Boudica1
Boudica1 in reply to Jumper99

Yes I was told not to touch the bins as well mainly the handles. As far as the bin lid there are ways to open the lid like using a long stick.

Luckily hubby hasn't got a letter so he can do that job. Not sure if this letter knows if you live in a house or flat as it does seem to be a standard letter sent to everyone on the list, apart from my name, hospital number, address and GP surgery.

Oh and unless I'm feeling unwell or the hospital cancels appointments I can still attend. 🤔🤔🤔🤔😈😈😈♥️

Jumper99
Jumper99 in reply to Boudica1

No obviously not to do with living in a flat then. 😀. Thank you. I’ll wear my rubber gloves and wash them as soon as I get back from the bin.

My hospitals cancelled all my appointments so I haven’t had to think about that one. X

Thanks Paul.

Thank you so much Paul_Howard for all the information you provide 🙏🏼

Thank you for this, it's good to have all the information in one place. Can I just add a warning. Looking at the rheumatology grid, I scored as low risk and was going to contact my employer to say I could come back to work. Today I received my high risk letter from the hospital where I attend rheumatology. You're so right to remind us that the advice is for general rheumatology patients and I think that lupies should be very wary!

Paul_Howard
Paul_HowardAdministrator in reply to Tykle

Hi Tykle,

This is one of the reasons we added the flowchart and video from the team at Chapel Allerton. The chart focuses too much on medications and not underlying risks inherent within many people who have lupus.

The trouble is, that flowchart is based on medications too. It didn't even apply to me and advised standard social distancing, like the rheumatology table. Most of us know ourselves better than anyone and so we should trust our own judgements. The trouble is, that doesn't help us prove it to our bosses. However, the medical teams are obviously trawling through their patient information as quickly as they can, which must be so difficult at such a busy time. Well done them!

Thanx Paul

Thank you, Paul. I have found this site to be a lot of help with Coronavirus especially. Over the last 20 years I have concentrated more on my APS than my lupus-like condition but it seems that recent years my lupus has been worse than my APS. Putting this together it is indeed time I became a member.

Thanks for this.

The algorithm link distinguishing between types of social distancing is quite difficult to interpret

eg “strict social distancing” v “standard distancing” v “shielding”.

Hence in the UK we are experiencing confusion and over zealous enforcement from the police?!

Calculating risk to covid 19 in terms of numbers can be pretty difficult? So many other manifestations of lupus to consider?

Paul_Howard
Paul_HowardAdministrator in reply to Sue_petal

Hi Sue_petal. I think the video from Chapel Allerton Hospital in Leeds helps to explain the risk classification quite well - this is a resource for patients, whilst the scoring charts are aimed at clinicians.

youtube.com/watch?v=uNGPfnt...

Hidden
Hidden

Do you think I should attend a dental check as I have a sensitive tooth and am due to have appointment ? Hesitating as I am nearly 79 and have had Lupus for years , having been on hydroxochloroquine for about five years.

As my husband is 84 and has had a heart attack over a year ago , . . .it seems important important to stay self-isolating at home apart from walks in nature near home.

Paul_Howard
Paul_HowardAdministrator in reply to Hidden

Hi Hidden,

Sorry for the delay in responding to your comment. I think you should try and phone your dental practice and seek their advice.

Hidden
Hidden

Thank you Paul

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