Supported self-management For people living with rheumatoid arthritis (and other long-term conditions), an important aspect of care is the ability to understand the disease and deal with the practical, physical and psychological impacts that come along with it. Whilst medications to treat RA are an essential component of care, so is giving people the tools and sign-posting them to good sources of support to enable them to learn how to self-manage their condition. There is a great deal of evidence to show that being a good self-manager and being knowledgeable about your disease can improve your long-term outcomes and help you to experience a better quality of life. Find out, here in this section, about all the great NRAS self-management educational and supportive resources and services that are available to help you! Hear from NRAS National Patient Champion, Ailsa Bosworth MBE, why learning about your RA and how to become good at self-managing your disease, with the right support at the right time, is so important. Ailsa explains what supported self-management is all about and how SMILE, launched on 17 September 2021, can help you and what she does to keep herself as well as possible. The importance of Self-management Click to close video modal Close SMILE-RA (Self-Management Individualised Learning Environment) NRAS proudly launched their new e-learning programme – SMILE-RA – during RA Awareness Week 2021. SMILE is a unique and engaging e-learning experience for people with RA who want to learn more about RA, its treatments and how to become good at self-managing, and their families who want to understand how best to support their loved one. It will also be a useful resource for health professionals, new into rheumatology, who want to learn more about this complex autoimmune disease, how it is managed and the importance of self-management for their patients. Find out more and register Log in to SMILE This content is not currently optimised for use on mobile platforms, please access via a computer or laptop. This is due to significant amounts of changes from 3rd party suppliers which our developer is working hard to accommodate. We hope to be able to optimise SMILE-RA for use on mobile and ipad platforms in the coming weeks. To future-proof the modules available at launch, we signpost within some of the modules to modules not yet constructed. Please be aware of this but also be reassured that modules referred to yet currently unavailable, will be coming in the future, eg: Managing Fatigue, Work, Sleep disturbance etc. and information on these topics can be obtained in other ways/formats from NRAS through our many publications and extensive information on the website. EULAR recommendations In June 2021, EULAR published “Recommendations for the implementation of self-management strategies in patients with inflammatory arthritis” and a second paper associated with this work entitled: “Effectiveness of self-management interventions in inflammatory arthritis: a systematic review informing the 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis”. Read EULAR papers The Taskforce which produced these recommendations was lead by Joint Convenors: Ailsa Bosworth (NRAS) and Dr. Elena Nikiphorou (King’s College Hospital, London) and you can read more about this work in the research area on the NRAS website. The timing of these two publications is relevant to the launch of SMILE as they reinforce the importance of health professionals incorporating self-management strategies into routine clinical care to provide a more tailored and holistic approach to care than a clinical medical management model of care. New2RA Right Start Right Start is a service for people who are newly or recently (within last 6-12 months) diagnosed. You can ask your health professional to make an online referral to NRAS Right Start or you can self-refer by clicking below. NRAS will provide rapid access to support and information to help you deal with your diagnosis and manage your condition in 4 easy steps. On receipt of your referral, a member of our team will contact you to arrange a call for up to an hour with our trained Helpline Team and explain the services, information and support we can offer you. It’s an informal, friendly chat with a trained expert. Click here to see what Eddie and Carol who have experienced Right Start think of this service. Please ask your rheumatology team to refer you to this service via the refer a patient link. At this time only a healthcare professional can refer you to this service. Living with RA Living with RA is a service for people who having been living with RA for some time. You can ask your health professional to make an online referral to NRAS Living with RA. NRAS will provide rapid access to support and information to help you deal with your condition, particularly at times when things may be changing. For example, you may be moving onto a new drug and want to speak to someone else who is using this treatment. You might be thinking about starting a family or having to contemplate surgery. Whatever the issue, we can help with the right information and most appropriate type of support. On receipt of your referral, a member of our team will contact you to arrange a call for up to an hour with our trained Helpline Team and explain the services, information and support we can offer you. It’s an informal, friendly chat with a trained expert. Please ask your rheumatology team to refer you to this service via the refer a patient link. At this time only a healthcare professional can refer you to this service. Patient Initiated Follow Up (PIFU) You may have heard about a new kind of outpatient follow up pathway called ‘Patient Initiated Follow Up’, PIFU for short, or there are other ways of describing this kind of follow up such as ‘Direct Access’ or ‘Patient Initiated Return’ (PIR for short). These new pathways which put the patient in control of when they see their team rather than having automatic ‘fixed’ appointments given by your rheumatology team every 6 or 9 months or so, are starting to be more widely introduced in rheumatology and all other specialties. For more information about PIFU and what this might mean for you, click here. Other Self-management resources you can explore on the NRAS website include: Web Link We have a wide range of publications which you can download or order in hard copy → Web Link We have community groups around the UK where you can find local support and hear from expert speakers on different topics of interest → Web Link We have an online community of people with RA (accessible 24/7) who can provide support and share their experiences → Web Link Our national helpline is available Monday – Friday 09.30 – 4.30 – speak to our wonderful, empathetic, trained helpline team about whatever is concerning you → Web Link Here for You is our telephone peer support service. We can match you with a trained volunteer with RA who can be a vital, supportive, listening ear when you need to talk to someone who understands what you are going through first hand → Web Link We have a huge range of videos on many different subjects relating to RA and living with the condition available 24/7 on our YouTube Channel → Web Link If Facebook is your thing, join our lively Facebook Community → Web Link Watch our Facebook Live video events (even if you don’t have a Facebook account). Many are on issues related to COVID but there are also many on non-COVID related subjects. → Web Link Webinars – much like our Facebook Live events, we have a whole range of interesting webinars delivered by experts in rheumatology and related fields → Web Link Our Resource Hub is bursting with information – use the intelligent search function to find what you are looking for → Web Link Our news section will keep you up to date with things in the world of rheumatology and related fields → Web Link Sign up to one of our newsletters and always be in the know and up to date (they are free!) → Web Link Become a member and get our Magazine (News Rheum) 2 x a year. The magazine is full of interesting articles and features to help you find out more about RA and how to live well with it. → Web Link See the videos on Exercise – plenty of options for you without a scrap of lycra in sight! → Web Link Foot health is an area where we know people struggle to get help. Visit the Foot Health area on our website which contains comprehensive information to support your foot health needs. → Web Link Grab a cup of tea and watch our Foot Health on line course with Podiatrist Robert Field → NRAS in 2022 0 Calls answered 0 Publications sent out 0 People reached
SMILE-RA (Self-Management Individualised Learning Environment) NRAS proudly launched their new e-learning programme – SMILE-RA – during RA Awareness Week 2021. SMILE is a unique and engaging e-learning experience for people with RA who want to learn more about RA, its treatments and how to become good at self-managing, and their families who want to understand how best to support their loved one. It will also be a useful resource for health professionals, new into rheumatology, who want to learn more about this complex autoimmune disease, how it is managed and the importance of self-management for their patients.
EULAR recommendations In June 2021, EULAR published “Recommendations for the implementation of self-management strategies in patients with inflammatory arthritis” and a second paper associated with this work entitled: “Effectiveness of self-management interventions in inflammatory arthritis: a systematic review informing the 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis”. Read EULAR papers
New2RA Right Start Right Start is a service for people who are newly or recently (within last 6-12 months) diagnosed. You can ask your health professional to make an online referral to NRAS Right Start or you can self-refer by clicking below. NRAS will provide rapid access to support and information to help you deal with your diagnosis and manage your condition in 4 easy steps. On receipt of your referral, a member of our team will contact you to arrange a call for up to an hour with our trained Helpline Team and explain the services, information and support we can offer you. It’s an informal, friendly chat with a trained expert. Click here to see what Eddie and Carol who have experienced Right Start think of this service. Please ask your rheumatology team to refer you to this service via the refer a patient link. At this time only a healthcare professional can refer you to this service.
Living with RA Living with RA is a service for people who having been living with RA for some time. You can ask your health professional to make an online referral to NRAS Living with RA. NRAS will provide rapid access to support and information to help you deal with your condition, particularly at times when things may be changing. For example, you may be moving onto a new drug and want to speak to someone else who is using this treatment. You might be thinking about starting a family or having to contemplate surgery. Whatever the issue, we can help with the right information and most appropriate type of support. On receipt of your referral, a member of our team will contact you to arrange a call for up to an hour with our trained Helpline Team and explain the services, information and support we can offer you. It’s an informal, friendly chat with a trained expert. Please ask your rheumatology team to refer you to this service via the refer a patient link. At this time only a healthcare professional can refer you to this service.
Patient Initiated Follow Up (PIFU) You may have heard about a new kind of outpatient follow up pathway called ‘Patient Initiated Follow Up’, PIFU for short, or there are other ways of describing this kind of follow up such as ‘Direct Access’ or ‘Patient Initiated Return’ (PIR for short). These new pathways which put the patient in control of when they see their team rather than having automatic ‘fixed’ appointments given by your rheumatology team every 6 or 9 months or so, are starting to be more widely introduced in rheumatology and all other specialties. For more information about PIFU and what this might mean for you, click here.
Other Self-management resources you can explore on the NRAS website include: Web Link We have a wide range of publications which you can download or order in hard copy → Web Link We have community groups around the UK where you can find local support and hear from expert speakers on different topics of interest → Web Link We have an online community of people with RA (accessible 24/7) who can provide support and share their experiences → Web Link Our national helpline is available Monday – Friday 09.30 – 4.30 – speak to our wonderful, empathetic, trained helpline team about whatever is concerning you → Web Link Here for You is our telephone peer support service. We can match you with a trained volunteer with RA who can be a vital, supportive, listening ear when you need to talk to someone who understands what you are going through first hand → Web Link We have a huge range of videos on many different subjects relating to RA and living with the condition available 24/7 on our YouTube Channel → Web Link If Facebook is your thing, join our lively Facebook Community → Web Link Watch our Facebook Live video events (even if you don’t have a Facebook account). Many are on issues related to COVID but there are also many on non-COVID related subjects. → Web Link Webinars – much like our Facebook Live events, we have a whole range of interesting webinars delivered by experts in rheumatology and related fields → Web Link Our Resource Hub is bursting with information – use the intelligent search function to find what you are looking for → Web Link Our news section will keep you up to date with things in the world of rheumatology and related fields → Web Link Sign up to one of our newsletters and always be in the know and up to date (they are free!) → Web Link Become a member and get our Magazine (News Rheum) 2 x a year. The magazine is full of interesting articles and features to help you find out more about RA and how to live well with it. → Web Link See the videos on Exercise – plenty of options for you without a scrap of lycra in sight! → Web Link Foot health is an area where we know people struggle to get help. Visit the Foot Health area on our website which contains comprehensive information to support your foot health needs. → Web Link Grab a cup of tea and watch our Foot Health on line course with Podiatrist Robert Field →