Resource Supported Self-Management Matters Why learning about your disease and how to manage the physical and mental/emotional aspects of it to improve your long term outcomes is so critical today. A Blog (longish read) by Ailsa Bosworth MBE, Founder and National Patient Champion, NRAS Print The concept of self-management When I was first diagnosed with RA in 1981, supported self-management just wasn’t a ‘thing’. You did what the Doctor told you to do and tried to survive the burden of pain, fatigue and creeping disability, especially if your treatment wasn’t slowing the progression of disease or controlling the symptoms adequately. It was a very different time. After the first 3 years of aggressive disease and already having had my first surgery, I was still only on analgesics and anti-inflammatories! When eventually I was given methotrexate (MTX), it didn’t work. (Methotrexate is currently the most frequently used drug in the treatment of RA and the first tests to treat patients with psoriasis and RA were published in 1951. However, until the 1980s there was only limited use of MTX in the treatment of RA.) I cycled through all the other conventional DMARDs at the time, including Gold injections which some may remember, which equally did nothing to slow the disease or ease the pain, until I was given oral steroids (prednisolone) for the first time by a different rheumatologist than the one treating me up to that point. Back then it was understood that as long as you were on no more than 5-7.5 mg of oral prednisolone daily, all would be fine. After 20 years on between 5-7.5 mg daily, all was not fine and the steroids had done their damage. But by then, thank goodness, biologics* – Anti-TNF to be precise – had been developed and were just being introduced in clinical trials in the UK (1999-2000). A shift towards patient-centred care The advent of Anti-TNF therapy and biologics brought about a very much needed revolution in rheumatology. Sadly too late to undo the damage I had sustained, although biologics have saved my life despite most of them not working for me. However, the idea of supported self-management in long-term conditions’ management was beginning to gain traction in the late 1990s and early 2000s, with a notable shift in health policy towards patient-centred care. This shift was influenced by research indicating the effectiveness of self-management programs and a growing recognition of the need to empower individuals to actively participate in their own healthcare. There was a distinct move from a system focused on treating acute conditions to one that increasingly emphasised patient empowerment and self-management with a growing body of evidence supporting its effectiveness and cost-benefit. The Expert Patient programme (EPP) began in 2002 as a large-scale Department of Health (DoH) research project, using the Chronic Disease Self-Management Programme (CDSMP) licensed from Stanford University. The CDSMP aimed to find out how to put patients at the centre of their health care. Initially funded by government, EPP was devolved away from DoH to become a Community Interest Company (CIC) and grow in 2007. NRAS launch the RA Self-Management Program At the time, when I was starting NRAS in 2001, I read a lot of the work on studies by Barlow and Turner in the UK and Kate Lorig, Professor (Research) of Medicine (Immunology and Rheumatology), Emerita, Medicine – Immunology & Rheumatology at Stanford. It was Kate Lorig who developed the CDSMP, which demonstrated the positive impact of self-management support programs on patient-reported outcomes. I later worked with EPP and self-management guru Jim Phillips (now a Director of CEmPaC), and then its subsequent change to a Community Interest Company (CIC) to develop our face-to-face group RA self-management programme (RASMP), from 2008-2010. We then piloted it across 3 locations before launching it in 2012. A RASMP group in Glasgow, 2012 Treat-to-Target The treat-to-target (T2T) approach in rheumatoid arthritis (RA) was first proposed in 2010. An international task force, including rheumatologists and a person with lived experience, developed recommendations for managing RA with a T2T approach, aiming to achieve remission or low disease activity. The core idea behind T2T is to set specific, measurable goals (like remission or low disease activity) for RA treatment and then adjust therapy at regular intervals until the target is reached. This approach is designed to improve outcomes for patients by reducing disease activity, preventing joint damage, and enhancing quality of life. Our changing relationship with the NHS The reason I am explaining this background is because during the periods described above, and by comparison to the health system today, how we interact with the teams who look after us in rheumatology has changed enormously over time. When I was diagnosed, I didn’t have access to a nurse specialist or the multi-disciplinary team (MDT) we know today. I just had the consultant (and if you didn’t get on with them, it was tough!). The role of the specialist nurse started to evolve in the early 1980s and the first advanced nursing practice course at the Royal College of Nursing was introduced in 1990. People like Jackie Hill, Sue Oliver, Di Finney and Sarah Ryan (I can’t name them all but there were/and are many others) pioneered the role of the nurse specialist throughout the late nineties and the noughties. They strongly advocated that specialist nurses were necessary to run monitoring clinics and provide patient education and support to enhance self-management. I was fortunate and privileged to work with all of these inspirational nurse consultants, who taught me a lot, and am still learning and working with Di and Sarah. So myself and thousands of others diagnosed in the early 80s, went from no expectation from the system and having to just manage on your own with little or no help, to a period throughout the late nineties and the noughties where we were offered education and support from a nurse specialist and MDT. At that period they had more time and resource to help you with self-management . We were offered education sessions with the MDT, could get all kinds of bespoke splints made by occupational therapists (I had many for wrists, hands and even a whole leg splint!) and had regular sessions in a hydrotherapy pool for example. We even went through a brief period around 2012 – 14, when in England, GPs were paid to carry out RA health checks where risks of developing other conditions like cardiovascular disease, were measured. It was the polar opposite to what I’d experienced when first diagnosed. And then came COVID However, in the last 10-12 years, many of the kinds of help, support, services and appliances described above have been steadily declining as workforce issues have increased, along with pressures on the system relating to funding of the NHS. And then came COVID, and rheumatology teams were re-deployed to the COVID wards. In many areas rheumatology almost shut down for a period of time and people did not get their usual follow-ups. As a consequence of the waiting list build up and acute workforce shortages in lots of areas along with other factors affecting outpatient care and follow-up, the system has become a bit more like it was in the early 80s, where often you have to fight for whatever you need. Of course, access to care varies widely and there are also positive differences and advances in technology and available therapies to treat RA, and I wouldn’t advocate going back! But whilst our expectations remain high in terms of what we need and the kind of support we want, not everyone is able to, or wants to, have to fight the system to get those needs fulfilled…. One of the reasons public levels of satisfaction with the NHS are at a record low since records of this began. I have a great deal of sympathy for the health professionals in today’s struggling NHS, the majority of whom, in my experience, want to give their best level of care to their patients. Unfortunately, the pressures on the NHS currently make this next to impossible. This brings me back to the title of this blog: “Supported Self-Management Matters”. Back to the subject.. Now, more than at any other time in my 46 years living with sero-negative disease**(see explanation at the end), I feel it is so critically important to learn everything you can about your disease and how to manage it. This includes tracking symptoms and periodically measuring the physical and mental/emotional aspects of it if you want to improve your long term outcomes. You are the only person who can ensure that you do everything possible to optimise your quality of life. The NHS can’t do that. ONLY YOU CAN. Remember Treat to Target? The goal is remission or at least as low a disease activity as possible. That means seeing people regularly and adjusting their treatment to keep their DAS score as low as possible to maximise their quality of life and long term outcomes. But despite the fact that T2T strategies have been shown to significantly improve clinical outcomes in RA, including achieving remission and reducing disease activity, the T2T approach in RA appears to be sub-optimally implemented in clinical practice[1]. The Introduction of Patient Initiated Follow-up In the current NHS bringing everyone back for regular routine review is not being encouraged unless necessary, through the introduction of Patient Initiated Follow-Up pathways (PIFU), for eligible patients. This means people who are suitable for PIFU pathways (stable on treatment, able to contact their team by phone) will not have a fixed follow-up appointment for up to 2 or even 3 years in some areas. It will be up to them to ask to be seen if they feel they need to have an appointment. (For more information on PIFU, see www.nras.org.uk/PIFU) and our SMILE e-learning module on ‘how to get the best out of your consultation’ (www.nras.org.uk/smile). PIFU may be the right approach, and we understand that bringing well people into hospital for follow-up appointments is not the best use of system resources or busy people’s time. However, we don’t know if this is the right approach yet, as the data on PIFU is not sufficiently robust to support this method of follow-up care, without question. I am a Patient and Public Involvement Co-applicant on the TaILOR2 trial being conducted in 32 sites in the UK. TaILOR is testing whether PIFU is better than, worse than or the same as routine follow-up care determined by the rheumatology team, so we will know more in a couple of years about this. However, if you are on a PIFU pathway now, my firm view is that you should be submitting patient reported outcome questionnaire/s (PROMs) to your team periodically (every 6 months-1 year) to record how you are doing across a number of validated domains, eg. pain, fatigue, mental health, sleep, coping and doing a remote DAS28 score. Two or three years is a long time to go without being seen and if no remote monitoring is in place, your team have no data on what is happening to you. A recent groundbreaking study from Spain Barriers to Patient-Reported Outcomes in Rheumatoid Arthritis, has shed light on the use of PROMs in the treatment of RA. In summary, by prioritising patient experiences and integrating PROMs into standard care protocols, the study team claim we may soon witness a future where treatment decisions are driven not only by clinical data but also by the authentic voices of patients themselves. It’s up to us So what does all this mean? What are we supposed to do? Let me break it down into some broad steps as examples of what is within your control. In 2026, unless you are newly diagnosed and getting started on treatment or being switched to a new treatment, you are less likely to be seeing your rheumatology team on a regular basis every 6-12 months or so. Periodic or annual reviews are less likely to be being done either by rheumatology or by your GP in primary care. Such reviews3 recommend that disease activity is checked and risk of developing other conditions is measured – for example heart disease, osteoporosis, eye health and mental health, ie: taking a preventative approach to co-morbidities (other conditions). So it’s up to YOU. You need to monitor how you are doing and log symptoms or side effects which you may need to share with your team at some point. You can do this in a number of ways: write things down in a note pad with dates against each entry, log things in a health app or use an RA app on your phone (see https://nras.org.uk/resource/nras-health-wallet/), record a voice memo and email it to yourself so you can keep in a folder on your laptop, buy a desk diary and log things in the diary. Don’t assume just because you’ve had your disease for a few years that you know all you need to. I can guarantee there will be lots of important and relevant information you are not aware of – keep up to date by signing up for our free e-newsletter and keep an eye on our website for upcoming webinars and events which you might find of interest. I’m still learning new things after 46 years! https://nras.org.uk/about-nras/newsletter/ Invest in yourself and watch our SMILE e-learning modules – it’s free to register and you can watch at your own speed. 3 new modules were published in February 2026 on how to reduce your risks of heart disease – a common cause of death in people with RA! www.nras.org.uk/smile These new modules explain why you need to know what your blood pressure (BP) is on average. When did you last get it measured? Lots of people have high blood pressure without realising it which increases your risk of heart disease. The same goes for cholesterol levels. Make sure you know what your cholesterol levels are. When did you last have this measured? Keep an eye on your weight and if it’s a lot higher than it should be get help to address this – you are not alone, well over half the population are overweight. Do you know what your blood sugar levels are? Never had them tested? (We are also at increased risk of Type II Diabetes). Our cardiovascular disease risk modules will inform you about what you need to ensure gets measured and how often and there is a third module on diet and nutrition. Do you get some exercise every week? I can hear the groans! Exercising is really hard when you have a painful disease like RA, I know. But doing something, however little, is better than doing nothing. Watch our SMILE modules on exercise. The benefits are huge across virtually all symptoms. Are you aware of what triggers a flare? Do you find stress can do this? Read our Stress Matters report published earlier this year. https://nras.org.uk/product/stress-matters/ Would you benefit from some peer support from someone else with RA who understands what you are going through? Call our helpline: 080 298 7650 and speak to one of our trained peer support volunteers or join our online community NRAS HealthUnlocked (it’s free) https://healthunlocked.com/nras Are you going through a difficult time and need more regular emotional support for a few weeks? We partner with a wonderful charity called the Wren Project who support people with autoimmune disease. We can connect you if you feel you need that extra support for a while, call our helpline to find out how. Be aware of all the great, evidenced based resources, services, information and programmes we offer, like Right Start (referral to RS is from a health professional – www.nras.org.uk/rightstart.) You don’t have to struggle on your own when things get tough. Visit our website from time to time and get up to date news: www.nras.org.uk Are you a woman in her 40s whose symptoms appear to be worsening? It may be that you are approaching the menopause (peri-menopausal). The average age of menopause in the UK is 51, though for some women – such as women from a south Asian background – it may start earlier. Many symptoms of the menopause overlap with those of RA, such as fatigue, joint pain and brain fog. Consider talking to your GP and/or rheumatology team. We are launching a new booklet, Menopause Matters, on March 8th. We have a JoinTogether group on Menopause and an NRAS Live event with Menopause Expert Vikram Talaulikar (NRAS YouTube channel) which you can watch back. https://www.youtube.com/watch?v=_cMmxw_EI6Y If you prefer to get your information in video format, visit our youtube channel which has literally loads of educational webinars and NRAS Live sessions, stories from folk with lived experience. Find it here: https://www.youtube.com/c/NRASUK Over many years, I have adapted my lifestyle to improve my quality of life living with RA. I’ve worked really hard at it and now it’s just part of every-day life, I don’t have to think about it. It takes time, so be patient and kind to yourself. Being part of the NRAS for nearly 25 years has given me lots of learning opportunities (and still does) and as a consequence, I believe I am more in control of my disease, my body, my life and my ability to enjoy it and still be working pretty much full time than at any other time since being diagnosed, despite 21 surgeries, much disability and physical limitation. You do have to work at being a good self-manager with the right support, until it becomes second nature. However, I am more convinced than ever that this is something that will benefit you enormously if you open your mind to the possibility that you don’t know what you don’t know and you need to learn more about your disease and the world of supported self-management. SSM runs in parallel with your medical care and treatment, and even if you’ve been living with RA for some time, there’s more you can learn and do. The right support at the right time whether it’s from your team, friends/family, NRAS, employer or other organisation will contribute to your ability to self-manage with confidence. It will help you to live better. Here are two quotes from people who have engaged with NRAS at different times which are typical of many we receive. “Having RA will always impact my life but knowing NRAS is there with abundant support in times of difficulty and uncertainty, enriches my life greatly. Thank you NRAS.” I would just like to say that Smile RA came at the right time for me when I was diagnosed in July 2021. I was totally ignorant to this condition and with it coming totally out of nowhere and no family history whatsoever, at the time it was an absolute emotional roller-coaster. I didn’t know which way to turn. All the tutorials on smile RA helped me greatly in knowing what to do and say at the various stages and what to expect from the various teams. It gave me direction. I have also used your helpline and it was from there that I was pointed to the ‘exercise back to sport group’. That also helped me greatly and nearly 3 years down the line I am more or less back to my exercise routine pre RA. I would just like to say thank you and will look forward to the next smile RA tutorial. Keep up the great work. Thank you for reading this and keep learning, it will serve you well. References: https://pubmed.ncbi.nlm.nih.gov/36549856/#:~:text=Conclusions%3A%20Despite%20recommendations%2C%20the%20T2T,treatments%20to%20improve%20disease%20outcomes. 2022 Prof. Peter C. Taylor – Treat-to-target in rheumatoid arthritis: a real-world study of the application and impact of treat-to-target within the wider context of patient management, patient centricity and advanced therapy use in Europe TaILOR: https://nras.org.uk/resource/tailor-study/ https://www.nice.org.uk/guidance/ng100 * Biologics – Biologics are complex medications derived from living sources, such as proteins, genes, or living cells, rather than being derived from chemicals which target specific parts of the immune system rather than having a dampening down effect of the whole immune system. Unlike traditional drugs, biologics are generally much larger, more complex molecules (so cannot be taken by mouth) that treat underlying causes of disease but require more intricate manufacturing and storage. ** Seronegative RA is a sub-type of RA and is diagnosed when individuals test negative for both Rheumatoid Factor (RF) and anti-CCP antibodies, but still exhibit symptoms and signs of RA. This means that the typical antibody markers associated with RA are absent in their blood tests. Some individuals with seronegative RA may be misdiagnosed or have their diagnosis delayed, potentially missing the “window of opportunity” for early and effective treatment.