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:
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
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.
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.
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