LUPUS UK

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

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.

Written by

Paul_Howard

Partner

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39 Replies

•

Ceri-NorthWales3 years ago

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

Paul_HowardPartner in reply to Ceri-NorthWales3 years ago

Hi Ceri-NorthWales ,

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

Ceri-NorthWales in reply to Paul_Howard3 years ago

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_HowardPartner in reply to Ceri-NorthWales3 years ago

Hi Ceri-NorthWales ,

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

Loopyloo433 years ago

Hi Paul if I can help I would live to thankyou

Paul_HowardPartner in reply to Loopyloo433 years ago

Hi Loopyloo43 ,

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

Jules233 years ago

Hi Paul. Happy to help.

Paul_HowardPartner in reply to Jules233 years ago

Hi Jules23 ,

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

Karm3 years ago

I will take part if you still need anyone

Paul_HowardPartner in reply to Karm3 years ago

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

happytulip3 years ago

Hi Paul,

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

Paul_HowardPartner in reply to happytulip3 years ago

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

Cal663 years ago

Yes, I would love the opportunity to take part.

Paul_HowardPartner in reply to Cal663 years ago

Hi Cal66 ,

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

Susieliz393 years ago

Hello Paul

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

Regards

Sue

Paul_HowardPartner in reply to Susieliz393 years ago

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-Warrior3 years ago

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

Paul_HowardPartner in reply to SLE-Warrior3 years ago

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.

lupieibbie3 years ago

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

Paul_HowardPartner in reply to lupieibbie3 years ago

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.

Oshgosh3 years ago

That sounds really interesting,please send me details .

Paul_HowardPartner in reply to Oshgosh3 years ago

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_Howard3 years ago

Thanks

Boudica13 years ago

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_HowardPartner in reply to Boudica13 years ago

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.

3 years ago

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

Paul_HowardPartner in reply to 3 years ago

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.

Cas703 years ago

Happy to help Cas70

Paul_HowardPartner in reply to Cas703 years ago

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.

GlasgowHen3 years ago

Happy to help too if you need

Paul_HowardPartner in reply to GlasgowHen3 years ago

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.

3 years ago

Hi Paul,

I will fill one in, if you still need anyone

Paul_HowardPartner in reply to 3 years ago

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.

SurferGuy3 years ago

And another volunteer happy to help

Paul_HowardPartner in reply to SurferGuy3 years ago

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-ewe3 years ago

Only too happy to help if I can Paul.

Paul_HowardPartner in reply to Spotty-ewe3 years ago

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.

Tykle3 years ago

I'll add to the list if needed!

Paul_HowardPartner in reply to Tykle3 years ago

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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