Rare Autoimmune Rheumatic Diseases Patient Survey

[Suzym2u]

The Rare Autoimmune Rheumatic Diseases Patient Survey

This survey has been developed on behalf of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA), a partnership that was formed in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases.

Although these diseases appear to be different, many of the problems experienced by those living with these diseases are very similar. The founding partners of the Alliance are:

Lupus UK

SRUK

Vasculitis UK

British Society for Rheumatology

Please follow this link

vasculitis.org.uk/news/pati...

[Hidden]

Completed the questionnaire

[nanaC]

Hi Susan

Started to fill in this questionnaire, but like many others it frustrates when your answers dont fit with the choices! For instance this particular questionnaire asks how long was your wait to see a specialist. This didn't apply to me as I was diagnosed with EGPA when admitted as an emergency. it also assumes you are seeing a rheumatologist, which I am not. I am seen by a renal team. It's a pity you can't explain these things

[Suzym2u Moderator Vasculitis UK in reply to nanaC]

The question does say "other than a Rheumatologist" John does not see a Rheumatologist either but he sees Respiratory, Cardiologist and a Neurologist and was able to answer the question. There is an option for a nephrologist for you.

John was also admitted as an emergency as he was coughing up blood so had access to a specialist within weeks so was able to answer the question.

Hope this helps

[charlieab]

Great survey, covering important issues. Particularly glad they are looking at problems getting a diagnosis. Though they were like buses with me!

[grindhaus]

I wanted to fill out this survey but it is meant for UK residents only. Oh well.

[Suzym2u Moderator Vasculitis UK in reply to grindhaus]

Sadly , for now it is

[wobblypat]

Filled survey in. I found it difficult to answer some questions as I have been dealt with by two contrasting hospitals. The first, my local one, would have difficulty recognising why a legless man could not walk. The second one, The National Hospital for Neurology and Neurosurgery in Queens Square, London were just the opposite. They treated me well, explained the reason for any procedures undertaken, were quick to refer me to other specialisms when needed, put a rocket under my local provision staff, when necessary and kept me under close watch until I was in remission.

[AndrewT]

Apparently this Questionnaire is NO Longer Active!