Lupus & COVID-19 - Updated Guidance - COMING SOON - LUPUS UK

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Lupus & COVID-19 - Updated Guidance - COMING SOON

Paul_Howard
Paul_HowardAdministrator

Over the weekend the Government published updated guidance for people living in England and Wales who are shielding.

At LUPUS UK we will be consulting with experts before updating our guidance for people with lupus.

Please read more at lupusuk.org.uk/covid19-guid...

We are grateful for your patience during this uncertain time.

30 Replies
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Thanks for this Paul.

What with people being “downgraded” and now being told we can meet people outside, before the initial 12 week period of self isolating/ shielding has expired, I think it’s important for us to know what the lupus expert’s opinions are on this.

Best wishes

Wendy

Thank you Paul.

Thankyou 😀

Hi Paul, thanks for this. As you know from our posts on Friday, I think the guidance to hospitals may have changed in Scotland, albeit under the radar. A Rheumatology nurse told me that lupus wasn’t putting me at any more risk than the next person but when I asked for more info she was very unsure. That contradicts your post from the Rheumatoid Alliance showing initial findings of rheumatology patients who’ve had the disease. I’m not confident with what I’m being told by the hospital at the moment.

Paul_Howard
Paul_HowardAdministrator in reply to Froggie70

Hi Froggie70,

I'm not aware of any changes to official guidance in Scotland about the risk categorisation of rheumatologic conditions. It may change in the future as we are learning more about the virus and who is most at risk of dangerous complications, but I've seen nothing about a change yet.

happytulip
happytulip in reply to Froggie70

I think it's more about the drugs we're on. It seems that long term steroids seem to be a big risk factor?

Paul_Howard
Paul_HowardAdministrator in reply to happytulip

Just to confirm, we've not been made aware of any changes to the risk stratification for rheumatology patients - this considers the diagnosis, additional risk factors and various treatments.

It does seem likely that steroids are a bigger risk than some other immunosuppressants, but we're not aware of any lupus patients being told their risk has been revised so far.

Hi @Paul_Howard. I have. Back in March the Rheumatology nurse told me I should be shielding then on Friday she told me I was not at any greater risk than anyone who doesn’t have lupus. When I asked her why and what had changed she couldn’t give me a straight answer. I never did receive a shielding letter. Tbh I think I should have been in the strict social distancing category in the first place. Not even that now.

Paul_Howard
Paul_HowardAdministrator in reply to Froggie70

Hi Froggie70,

I think the fact that the nurse couldn't provide a reason for the change of your risk category speaks for itself. All I can repeat is that we are not aware of any change in guidance relating to the risk of rheumatology patients in Scotland.

I appreciate that you might not be aware of it but it’s just happened to me.

Thanks Paul,we really need some clear cut guidance over the governments latest PR stunt. A lot of employers are taking the one walk outside as if you can go for a walk you can come back to work. Many of us that are sheilding are in employment and it would be appreciated if we knew what the government will be doing to protect our jobs and finances. We are sheilding because we have been advised to but the thought of having no job/ money coming in keeps me up at night. There doesn't seem to be much help financially for those sheilding.

Wendy39
Wendy39 in reply to Hatelupus

Hello

I just wanted to say that in my husband’s company those that are shielding and do not feel they are safe to return to work yet, are being furloughed on 80% of their wage.

Lupus comes under the disability discrimination act and therefore you cannot be sacked due to having lupus nor for being off work sick due to lupus - up to a maximum point.

If you are sacked you have a right to claim wrongful dismissal under the Disability Discrimination Act.

I appreciate that some employers are not very helpful or have few morals but at this time, they should be more flexible.

I have seen something confirming that although you can now exercise you aren’t expected to return to work.

I would advise anyone having issues in reaching an agreement with their employer about when it is the right time for them to return to their workplace, as opposed to working from home, to 1) speak to their consultants and GP for advice on your own situation- everyone’s risk factors due to history and meds will be slightly different and 2) contact the CAB for further advice. Or your trade union if you are a member of one.

It’s such a shame that it’s come to this. I don’t think Rheumatology patients should be one umbrella term with these policies. We need specific advice for lupus.

Best wishes

Wendy

happytulip
happytulip in reply to Wendy39

Hi Wendy, that's really useful. Will it help you Froggie70 ?

Froggie70
Froggie70 in reply to happytulip

Hi. Yes absolutely. My GP has been very understanding but says he can’t help. But this information supports me wanting to work from home. Thanks for your support. 🤗😘

Froggie70
Froggie70 in reply to Wendy39

Hi Wendy, this is great thank you. GP isn’t much help but this information is really useful and will hopefully give me a stronger footing if my boss gets tricky. 🤗😘

Wendy39
Wendy39 in reply to Froggie70

So pleased I could help. Awful situation to be in. You don’t need the added stress. Good luck. x

Wendy39
Wendy39 in reply to Hatelupus

I knew I’d read it somewhere. Just did a quick google. BBC News.

“Vulnerable people in England and Wales advised to stay home since the coronavirus lockdown began will be able to go outdoors again from Monday.

The change means people will be able to go out with members of their household.

Those living alone can meet with someone from another household while maintaining social distancing.

Support for shielders, such as food and medicine deliveries, will continue. Shielding advice in Northern Ireland and Scotland has not yet changed.

Who should be shielding?

In England, those shielding will be advised that they can go outside once a day, with their household or, if they live alone, to meet one other person at a two-metre distance.

In Wales, outdoor exercise for people shielding will be unlimited.

Those shielding should not go out to work, to shop or visit friends in their homes.

Around 2.5 million UK people were advised to stay at home as lockdown began, because they were identified as being at particularly high risk of needing hospital treatment for coronavirus symptoms.

Most were notified by their GP.

The list of people who should be shielding includes solid organ transplant recipients, cancer patients undergoing chemotherapy, pregnant women with heart disease and people with severe respiratory conditions such as cystic fibrosis and severe asthma.”

Hope that helps.

Wendy

google.co.uk/amp/s/www.bbc....

gov.uk/government/publicati...

Hatelupus
Hatelupus in reply to Wendy39

Thank you Wendy, I really appreciate your advice. I need to speak to the managers and see what they say. There's only 2 of us sheilding in a workforce of approx 50-60 people. I may have to speak to my GP and take it from there.

Once again thank you for taking the time to reply. X

Wendy39
Wendy39 in reply to Hatelupus

No problem. I’m no expert. Just don’t want people backed into a corner. At this time of pandemic and national crisis, employers should try to be flexible. But I’m also fully aware that some employers aren’t very understanding.

Best wishes for getting an amicable agreement for yourself.

Wendy

I've heard from my consultants and medical friends that long-term steroid use is a big risk factor. I was wondering if we could get some clarification on this?

Paul_Howard
Paul_HowardAdministrator in reply to happytulip

It does seem likely that steroids could be a bigger risk than some other immunosuppressants, but we're not aware of any lupus patients being told their risk has been revised so far. We'll wait to see if the British Society for Rheumatology publishes changes to their risk stratification guidance after reviewing the increased evidence available.

Hi Paul.

Many thanks for message.

The lupus clinic at Guys , sent me a genericl email on Thursday to say that I am now like the general population because im only on Mycophenalate and therefore I just need to stick to strict social distancing and thats it!!

When I asked for a reason my consultant said that the mental health risk now outweighed the risk of having lupus and as Guys hospital are world leading experts , I need to trust their decision!

How can they be so certain when no-one knows enough about covid yet.

I'm worried!

Look forward to hearing any updates.

Paul_Howard
Paul_HowardAdministrator in reply to ange726

Hi ange726,

I've started to receive some email responses from UK expert lupus clinicians. So far they have all reported that it is very rare for their lupus patients on immunosuppressants to present with severe COVID-19 symptoms.

However, it is very difficult to draw conclusions from this because it may be that those lupus patients have been very cautious with shielding and avoided contracting the virus.

There is a growing evidence base however that suggests immunosuppressant medications are not necessarily associated with severe COVID-19 infection. The biggest concern is steroids (>10mg per day), age>70, heart disease, diabetes, male.

There is also a worry that some people are avoiding seeking medical advice/support due to concerns about the virus and this is causing other problems.

Sezvic
Sezvic in reply to Paul_Howard

So from my understanding, people who are immune suppressant will be out of the shielding category and we will be asked to go back to work?

Paul_Howard
Paul_HowardAdministrator in reply to Sezvic

Hi Sezvic,

I'm not convinced that there is sufficient evidence available at the moment to make that decision. The evidence base is growing to suggest that people on immunosuppressant medications may not be at as much risk of severe COVID-19 as previously suspected though. If the evidence continues to support this, it could eventually result in a change of guidance for some people who are shielding.

Hi Paul, one problem that I am anticipating is that Lupus is a spiders web of conditions as you know.

For example, no one "just has Lupus"

Some have lupus with heart conditions, some lupus with lung problems, or lupus with kidney problems. Or like me Lupus with neuro, cardiac and primary immune deficiency. And that's before we start on the medications.

What I am trying to get at is that each individual person needs to be looked at in an individual holistic manner and that is very difficult to do with an algorithm based solely on rhematic disease.

Individually, on the Rheumatology algorithm I would not be deemed to be extremely vulnerable, but if you add all my diagnoses together then it's very obviously clear that I need to be shielded.

I am concerned that some may be missed as a result. Most of us have overlap disease of some sort.

What are your thoughts? Do you have a rough idea of when we will get an update please? I'm not hassling, I know you are working so hard. Just eager for an update from Rheumatologists.

Thank you

HT 🌷

Paul_Howard
Paul_HowardAdministrator in reply to happytulip

Hi happytulip,

Yes, you're absolutely right that it is impossible to provide blanket advice for everyone with 'lupus' because the disease and treatments can vary significantly, before taking overlapping conditions into consideration.

This is one of the reasons why the risk stratification exercise to identify those who are 'clinically extremely vulnerable' took so much longer than hoped. It wasn't possible to use existing NHS coding and so clinicians had to manually review cases. I think that on the whole, they did a great job and the vast majority of people who should be shielding have received that guidance. Unfortunately it's almost inevitable that people will have fallen through the cracks during this exercise and not have received the guidance and support they should have. Hopefully lots of these people have sought advice themselves and been directed to where they can get help.

I've almost finished work on an update to LUPUS UK's information and guidance. The section we are stuck on at the moment is about people who are in the 'moderate risk/vulnerable' group - there doesn't appear to be any distinct official guidance for them now. I hope we'll have our guidance published before the end of this week. It may depend how quickly the clinicians can get back to us with their reviews.

The Government has stated that they will next provide an update about the shielding guidance in the week commencing 15th June.

Thanks Paul 👍

Thank you Paul. I look forward to the update

Shielding isn't the easiest thing but mentally I'm ok considering everything.

Personally, my mental state would be alot worse if I was to land up in hospital with CV-19. It would put my recovery back years and completely wipe me out. And that's if I recovered. But I'm on long-term pred so maybe I'm more at risk?

I know alot of former colleagues have said that suicide attempts have soared. It's a sad reality in something like a pandemic. We also saw that in the 2008 crash. But the answer to that is to properly resource MH charities and services, not take potential risks with the physical health of the clinically vulnerable.

Just my opinion.

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