The National Rheumatoid Arthritis Society is ‘the voice’ of people affected by Rheumatoid Arthritis (RA) across the whole of the UK and in due course, we hope to be so for Juvenile Idiopathic Arthritis (JIA). Founded in 2001, we are the only UK charity devoted specifically to RA, and we are launching a service for families, children, young people and adults affected by Juvenile Idiopathic Arthritis in July 2014.
We take pride in the fact that everything we stand for and do is patient-led. Our head office team of 24 members of staff works closely with all of our NRAS Members and Volunteers, the Board of Trustees and our panel of Medical and Allied Health Professional Advisors to design, coordinate, fund and deliver a comprehensive and wide range of high quality products and member services for all affected by RA and in due course, JIA.
‘If you’ve just been diagnosed with RA or you think you may have it, you may be feeling all sorts of things: emotional, anxious or afraid of what the future holds. That’s perfectly understandable. I felt all those things and more when I was diagnosed over 30 years ago.
‘But things are so different now. There are now very effective treatments which are a lot better than used to be the case, so you can expect to lead a more normal life than was ever possible years ago. There is a lot of research happening around the world, with new drugs in the pipeline. The way in which treatment is delivered is also more targeted and effective. So it is all the more important to get an early diagnosis and start treatment as soon as possible.
What can I do to look after myself?
Our helpline is manned by three trained staff supported by other members of the NRAS team.
Our aim is to provide callers with up to date information, give emotional support especially for those going through a difficult time and help people understand more about the disease and the treatments available. We aim to keep well-informed of developments in the field of rheumatoid arthritis (RA) and will always try to answer your questions as fully as possible. We provide information and support on a range of topics including getting a diagnosis, side effects of medications, issues with work, the financial impact of RA, possible benefits available, diet and exercise, pregnancy, complementary therapies and surgery.
We receive a very wide range of calls and when relevant information or detailed knowledge is not available, we will always endeavour to find good evidence-based information from other sources, and give details of the best organisation to help you, perhaps with more in-depth knowledge and experience on a particular topic.
Callers need to be aware that we have no medical training and so unfortunately are not able to answer specific medical questions such as, “I’m not feeling well, should I stop my methotrexate?” In such circumstances we always refer callers to their rheumatology team or GP. We really do appreciate how frustrating this is as often it is difficult to get through to healthcare professionals, but it would be very unsafe for us to field this type of question.
We have access to a team of Medical Advisors; consultants, rheumatology nurse specialists and other health professionals whom we can contact for further information and advice. They are not unfortunately working here in the office with us but they occasionally help us to respond to difficult queries by email. Of course any responses provided by them in these circumstances can only be very general.
If you would like to talk to someone else who also has RA for general support, you may prefer to speak to one of our volunteers from the NRAS Volunteer Network. Our volunteers are trained to speak on the telephone about whatever aspect of your RA that you are most concerned about. This service is restricted to UK calls only.