Seeking a couple of UK volunteers - help needed t... - LUPUS UK

LUPUS UK

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

Paul_Howard profile image
Paul_HowardPartner
39 Replies

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.

39 Replies
Ceri-NorthWales profile image
Ceri-NorthWales

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

Paul_Howard profile image
Paul_HowardPartner in reply to Ceri-NorthWales

Hi Ceri-NorthWales ,

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

Ceri-NorthWales profile image
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 profile image
Paul_HowardPartner in reply to Ceri-NorthWales

Hi Ceri-NorthWales ,

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

Loopyloo43 profile image
Loopyloo43

Hi Paul if I can help I would live to thankyou

Paul_Howard profile image
Paul_HowardPartner in reply to Loopyloo43

Hi Loopyloo43 ,

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

Jules23 profile image
Jules23

Hi Paul. Happy to help.

Paul_Howard profile image
Paul_HowardPartner in reply to Jules23

Hi Jules23 ,

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

Karm profile image
Karm

I will take part if you still need anyone

Paul_Howard profile image
Paul_HowardPartner in reply to Karm

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

happytulip profile image
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 profile image
Paul_HowardPartner in reply to happytulip

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

Cal66 profile image
Cal66

Yes, I would love the opportunity to take part.

Paul_Howard profile image
Paul_HowardPartner in reply to Cal66

Hi Cal66 ,

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

Susieliz39 profile image
Susieliz39

Hello Paul

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

Regards

Sue

Paul_Howard profile image
Paul_HowardPartner 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 profile image
SLE-Warrior

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

Paul_Howard profile image
Paul_HowardPartner 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 profile image
lupieibbie

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

Paul_Howard profile image
Paul_HowardPartner 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 profile image
Oshgosh

That sounds really interesting,please send me details .

Paul_Howard profile image
Paul_HowardPartner 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 profile image
Oshgosh in reply to Paul_Howard

Thanks

Boudica1 profile image
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 profile image
Paul_HowardPartner 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.

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

Paul_Howard profile image
Paul_HowardPartner in reply to

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 profile image
Cas70

Happy to help Cas70

Paul_Howard profile image
Paul_HowardPartner 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 profile image
GlasgowHen

Happy to help too if you need

Paul_Howard profile image
Paul_HowardPartner 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.

Hi Paul,

I will fill one in, if you still need anyone

Paul_Howard profile image
Paul_HowardPartner in reply to

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 profile image
SurferGuy

And another volunteer happy to help :)

Paul_Howard profile image
Paul_HowardPartner 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 profile image
Spotty-ewe

Only too happy to help if I can Paul.

Paul_Howard profile image
Paul_HowardPartner 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 profile image
Tykle

I'll add to the list if needed!

Paul_Howard profile image
Paul_HowardPartner 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.

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