Our Information Production Service
We aim to provide user friendly accessible information to:
- People affected by SMA that:
- tells them about the condition, its management, services available, any treatment options and research updates
- enables them to communicate effectively with medical and other professionals and play an active role regarding their choice of care and treatment, for themselves or their children.
- Professionals who are new to the condition and in a support role that:
- enables them to understand quickly the nature of the condition and the challenges that are faced.
- Professionals in a support role that:
- tells them about service and support options and research and treatment updates.
We try to keep our information jargon-free and use as plain English as possible. We constantly review and work on improving access to our information website pages (see below).
We currently have insufficient resources and demand for the routine translation of our publications or for audio or braille versions. We will respond to requests for these on a case-by-case basis in as positive a way as possible.
Our Information sheets and Route Maps
These give SMA-related health and social care information and are within the scope of the Information Standard. We are committed to ensuring they contain good high quality information that meets the needs of our target audiences. They are produced via our Information Production System which meets the requirement of the Information Standard (IS). They display the Information Standard logo.
Health / social care information statements that appear in our promotional literature are drawn from these publications.
Our Research and Treatment Website pages
To keep the SMA community up-to-date in what is a very rapidly changing world, our updates covering clinical trials, treatment breakthroughs and reviews of clinical care research are either written by one of our professionally qualified Research Correspondents or translated from source material into more accessible language by our Information Production Team.
It is not possible within the short time-frames available to ask members of our target audience to review these updates which are not within the scope of the Information Standard. We do however, seek general target audience feedback about these pages. These pages do not display the Information Standard logo.
At times, we may develop an information sheet that pulls together information from these pages e.g. if a new treatment becomes available. Information like this would be within the scope of the Information Standard, would be prepared in line with our full production system and would carry the IS logo.
Our monthly E-News; children’s story books, our twice-a-year Inspirations newsletter and third party publications distributed by the organisation, for example The SMA Standards of Care, are not covered by our Information Production System. We do however take care to ensure that, to the best of our knowledge, whatever we publish is accurate and up-to-date. E-news and Inspirations display the Information Standard logo to show that we are an accredited organisation.
Our SMA Voices pages are the personal experiences of people affected by SMA. These are not within the scope of the Information Standard but again we take care to ensure their accuracy if they contain any condition specific information.