It’s a little over six months since I joined NRAS and already my time has come to write another blog. Despite a whole six months going by however, it's only in the last few weeks that I've really come to truly appreciate the value that patient groups hold and the great responsibility they have. A great responsibility that NRAS has.
I genuinely believe that we have some great healthcare professionals in this country but even if they were able to give each patient many more hours than they currently have the resources to do, it still would not be enough time for someone potentially facing a chronic condition, and with that, a never-ending list of questions.
Patient groups help to fill that void by offering some of the answers to these questions at a time of the patient’s choosing, giving them time to think about the condition and what it may mean for them. This is not taking away from the role of the doctor but complimenting their work by offering the patient reliable sources of information so they can then discuss their condition in an informed way. They also allow the patient to talk directly with someone who has “been there before” and knows something of what they are going through.
In the interest of doing a thorough job, I’ve spent the last few weeks doing some secret undercover work and learning more about different patient groups and what they do. Added to that I have been Googling a number of conditions. The internet is awash with opinion and when someone is in a vulnerable position a lot of that information can be quite daunting. It can also be factually incorrect or skewed so that the negative far outweighs the positive. The media don’t help by only ever reporting on the most extreme cases but some patient groups can be no better.
I do think NRAS can hold its head high when it comes to providing concise understandable information on its website about rheumatoid arthritis, not just about what the condition is, but what the prognosis can be. It also manages to keep abreast of new developments and areas of exciting research. Many organisations appear to only promote the worst case scenario in order to make their condition seem worse and therefore get more attention. While it is important to highlight the seriousness of RA, there is also the need to offer hope.
Any comments about how we can continue to improve our services are always welcome.