We have launched a new survey which aims to gather the views and experiences of people living in Wales with rare autoimmune rheumatic diseases (RAIRDs). This will support our submission to the Welsh Government as part of their consultation on new guidance for services for arthritis and long-term musculoskeletal conditions. This guidance is meant to advise and guide NHS health boards on the way they design services for people with these diseases, including RAIRDs like lupus, scleroderma, vasculitis and Sjögren’s syndrome.
Through sharing the results of this survey with the Welsh Government we hope to highlight the needs and experiences of people with RAIRDs and give a clearer picture of how people with these diseases are currently cared for, and their priorities, so that this informs new guidance.
This survey is anonymous. Most questions are optional and can be skipped if you prefer not to answer. There are 20 questions, most of which are multiple choice.
The information collected through our survey will be combined with the responses RAIRDA collected in 2018 and 2020 from patients across the UK, including Wales. Previous survey reports have been cited by Members of Parliament, clinicians, and researchers looking to improve the way people with these diseases are cared for. If you answered one or both of these surveys, please do fill this one in too – this survey builds on these and asks different questions specifically relevant to people living in Wales.
In addition to this survey, we are also looking to involve a small group of patients in commenting on our final submission to the Welsh Government. We hope this will make sure our submission is as guided by patients as possible. Please email RAIRDAuk@gmail.com if you would be interested in finding out more about what this would involve.
What is a RAIRD?
RAIRDA is a coalition of charities (Scleroderma and Raynaud’s UK, LUPUS UK, Vasculitis UK and the British Sjogren’s Syndrome Association). Whilst we tend to focus on the four conditions these charities represent, a full list of conditions which might be considered a rare autoimmune rheumatic disease (RAIRD) is below. If you have a diagnosis of any of these, and live in Wales, please do fill in our survey.
- Systemic lupus erythematosus (SLE)
- Antiphospholipid syndrome (APS)
- Systemic sclerosis (scleroderma)
- Sjogren’s syndrome
- Relapsing polychondritis
- Myositis/inflammatory muscle disease.
- Undifferentiated or Mixed Connective Tissue Disease
- Systemic vasculitis, including:
- Giant cell arteritis
- ANCA-associated vasculitis including: Granulomatosis with polyangiitis (Wegener’s), Microscopic polyangiitis, Eosinophilic Granulomatosis with polyangiitis (Churg Strauss)
- Behcet’s disease
- Takayasu’s arteritis
- IgA vasculitis (Henoch-Schonlein purpura)