RAIRDA Report - Chronic Crisis: The Impact of COVID-19 on people with rare autoimmune rheumatic diseases

[Paul_Howard]

Hi everyone,

Today, RAIRDA has published their report based on the responses to our online survey conducted in April/May this year – thank you so much to everyone who completed it.

“Chronic Crisis: The Impact of COVID-19 on people living with rare autoimmune rheumatic diseases” discusses the findings from the survey and outlines recommendations.

You can read about the key findings and access the report in full at lupusuk.org.uk/rairda-chron...

P.S. We have received confirmation that the announcement regarding changes to shielding for people living in England will be made as part of today's daily briefing at 5pm. Our updated information and guidance will be published tomorrow (23/06/20)

[Cathyan]

Thanks for this Paul. And for the heads up about the shielding announcement today.

[Hatelupus]

Thank you for the heads for today's briefing. Hopefully the government might give us some clarification 🤞

[Boudica1]

Hi just read the update regarding Shielding, seems it's to end on the 6th July and unless I misread it those who can't work from home will be back to normal work in August?

[Paul_Howard Partner LUPUS UK in reply to Boudica1]

Hi Boudica1 ,

People who are shielding should only return to work after 1st August if they cannot work from home and if their employer's risk assessment of the workplace demonstrates it is suitably safe. I'm working on the update to our guidance this morning and will publish it later today.

[LalSD]

Thank you Paul. With best, L

[Willow1414]

Thank you Paul ,

This survey read , and information provided has been a tremendous achievement of the most professional level .

🦋❤️

[Tonk]

The new rules just don't feel right to me. It feels to me that this is being led by economic factors rather than medical or scientific factors.

To my mind, the virus is still in the community, those of us shielding will still be very ill or may well die if we contract it.

When I look at the rise in the R value in Germany, I cannot see why it would not happen in the UK too.

I was under the impression that we would only be released from shielding once a vacine was available or the virus had completely died out within our country.

As a retired person, I shall continue to shield anyway but those still in harness won't have that luxury.

[Paul_Howard Partner LUPUS UK in reply to Tonk]

Hi Tonk ,

The shielding guidance is (and always has been) advisory. For those who don't feel comfortable leaving their household yet, that is fine - we'll do what we can to help support people to do that.

The prevalence of infected people within the community has dropped quite significantly since people were first advised to shield. I understand that people are concerned about a second wave and want to see what happens with the infection rate from re-opening things like pubs and restaurants first.

The concern about the economy has certainly driven some of the lifting of lockdown restrictions. From my conversations with various expert lupus clinicians across the UK, the opinion is that easing shielding a bit is important right now. There are very legitimate concerns about the mental well-being of many people who have been/are shielding. There are also many reports of people with lupus who have had hospitalisations from potentially preventable flares.

[Tonk]

Hi Paul, thank you for the reply.

I agree that the mental health has declined for some people during lock down.

I have today received my update on Corovavirus letter from HMG.

It is, in my opinion, contradictory and basically says to go to work/school, but to stay at home because you are still at risk from C19 of becoming very ill.

The Pm today stated that, amongst others, they have consulted with specialist charities and patient groups and this advice to ease lock down was fully agreed by them. Does that include Lupus UK?

I feel that as a group, shielders have been ignored in general during the three months of lock down and have not really been involved in any of the discussions about shielding and easing of the restrictions. I think many people are very worried and that worry can also have a detrimental effect on their mental health.

[Paul_Howard Partner LUPUS UK in reply to Tonk]

Hi Tonk ,

No, LUPUS UK were not consulted regarding easing the lockdown. Based on some of the negative reactions from charities I've seen, I'm not sure who they did consult with. As far as I can see, this is not publicly shared.

You're absolutely right that people who are shielding have been largely ignored throughout the lockdown, when they should have been the focus!