Seeking a couple of UK volunteers - help needed to test a RAIRDA online survey

[Paul_Howard]

Hi everyone,

I need two or three UK volunteers to test an online survey by the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA).

The short survey asks questions about your experiences of guidance and healthcare you've been provided with (or not) during the COVID-19 pandemic. We'd like to check that you understand the questions and have sufficient opportunity to provide answers that accurately reflect your experiences.

If you'd like to help, please comment below and I will send you a private message.

Thank you.

[Ceri-NorthWales]

Hi Paul, I'd interested to take part. Anything I could do to help is a good thing.

[Paul_Howard Partner LUPUS UK in reply to Ceri-NorthWales]

Hi Ceri-NorthWales ,

Thanks very much. I'll send you a private message in a moment.

[Ceri-NorthWales in reply to Paul_Howard]

Thank you for sending through.

On the section of NICE advising rheumatology team to take steps to protect patients, does this only refer to rheumatology apptoints or other hospital appts?

As I haven't got a rheumatologist, but have had other appt with other departments cancelled, postponed or via phonecall.

Just don't want to answer incorrectly

[Paul_Howard Partner LUPUS UK in reply to Ceri-NorthWales]

Hi Ceri-NorthWales ,

Excellent question - I'll pass this feedback on. It shouldn't just be about rheumatology.

[Loopyloo43]

Hi Paul if I can help I would live to thankyou

[Paul_Howard Partner LUPUS UK in reply to Loopyloo43]

Hi Loopyloo43 ,

Thanks very much. I'll send you a private message in a moment.

[Jules23]

Hi Paul. Happy to help.

[Paul_Howard Partner LUPUS UK in reply to Jules23]

Hi Jules23 ,

Thanks very much. I'll send you a private message in a moment.

[Karm]

I will take part if you still need anyone

[Paul_Howard Partner LUPUS UK in reply to Karm]

Thanks Karm . I'll send you a private message now.

[happytulip]

Hi Paul,

Happy to help if you need. I've been asked by the RAIRDA to do a few research bits before?

[Paul_Howard Partner LUPUS UK in reply to happytulip]

Thanks happytulip . Thanks for your offer. I'll send you a private message now.

[Cal66]

Yes, I would love the opportunity to take part.

[Paul_Howard Partner LUPUS UK in reply to Cal66]

Hi Cal66 ,

Thank you for your offer. I'll send you a private message now.

[Susieliz39]

Hello Paul

I would be willing to participate, let me know if required!

Regards

Sue

[Paul_Howard Partner LUPUS UK in reply to Susieliz39]

Thanks Susieliz39 .

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[SLE-Warrior]

Hi Paul. I am interested to take part in this.

[Paul_Howard Partner LUPUS UK in reply to SLE-Warrior]

Hi SLE-Warrior ,

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[lupieibbie]

I'm happy to volunteer if you need more sign ups.

[Paul_Howard Partner LUPUS UK in reply to lupieibbie]

Hi lupieibbie ,

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Oshgosh]

That sounds really interesting,please send me details .

[Paul_Howard Partner LUPUS UK in reply to Oshgosh]

Hi Oshgosh ,

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Oshgosh in reply to Paul_Howard]

Thanks

[Boudica1]

Would love to help if I'm any use but so far the diagnosis is all over the place apart from the Jessners Lymphocytic infiltration and a lot of individual stuff. Even the Sjogren's is sero-negative so doesn't have any 🌟 star marks for anything.

Good luck and keep safe.

♥️

[Paul_Howard Partner LUPUS UK in reply to Boudica1]

Hi Boudica1 ,

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it (regardless of current diagnosis) as possible then though. Thanks.

[Hidden]

I’d be happy to particulate but it looks like you prob have enough folk already!

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Thanks Hidden

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Cas70]

Happy to help Cas70

[Paul_Howard Partner LUPUS UK in reply to Cas70]

Thanks Cas70 ,

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[GlasgowHen]

Happy to help too if you need

[Paul_Howard Partner LUPUS UK in reply to GlasgowHen]

Thanks GlasgowHen

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Hidden]

Hi Paul,

I will fill one in, if you still need anyone

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Thanks Hidden

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[SurferGuy]

And another volunteer happy to help

[Paul_Howard Partner LUPUS UK in reply to SurferGuy]

Thanks SurferGuy

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Spotty-ewe]

Only too happy to help if I can Paul.

[Paul_Howard Partner LUPUS UK in reply to Spotty-ewe]

Thanks Spotty-ewe

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.

[Tykle]

I'll add to the list if needed!

[Paul_Howard Partner LUPUS UK in reply to Tykle]

Thanks Tykle

I think we've got enough volunteers to test the survey rigorously now. We'll be launching it at the beginning of next week and wanting as many people to complete it as possible then though. Thanks.