Reflections on how COVID has changed the health landscape and highlighted the importance of supported self-management

By Ailsa Bosworth, MBE

As we begin 2022, I’ve taken time out to reflect on what has happened in healthcare delivery generally, but especially within rheumatology, and many of you will be aware that we have produced resources to support people in a changed and changing healthcare landscape. Like the rest of the population, I’ve thought about the impact of COVID and discussed this with colleagues, family and friends, particularly in relation to the effects of the pandemic on people with rheumatoid arthritis (RA) and children, young people and their families with juvenile idiopathic arthritis (JIA). I have also been acutely aware, along with my colleagues at NRAS, of the toll the pandemic has taken on the lives of the health professionals who care for us. We all have stories, good and bad, about things that have happened to us in this 20-month period that none of us saw coming back at this time of year in 2019! However, I want to pay tribute to my rheumatology team and all the other teams around the UK who have been on the frontline dealing with COVID patients whilst desperately trying to keep some semblance of a service going for their rheumatology patients under sometimes extraordinarily impossible circumstances.

Now we are all trying to get back to some kind of normality, whilst having to remain careful and vigilant and minimise any risks to our personal safety and that of our family, colleagues and friends. We’re not out of the woods by a long chalk however, and I am still horrified at the number of deaths from COVID that are occurring each week that are no longer ‘news’ (except of course for the families and loved ones of those who have sadly passed). The number of infections is now on the rise again due to the new Omicron variant and we are now seeing massive queues in places like London with people waiting, often hours, to get their booster.

I am triple vaccinated and have also had my flu vaccination and whilst going out more, continue to wear a mask and take sensible precautions. I haven’t been ‘shielding’ since July 2021, although I am still working from home and will continue to do so for some time to come, until we see how things unfold over the year end celebrations and into a new year. There has not been a comparative time in my lifetime (and I am very old!!) when so many issues (both global and UK) such as climate change disasters, pandemic, NHS workforce crisis, wars which rumble on and on resulting in huge numbers of refugees, famine, etc. are having such a devastating impact on all of our lives and on this beautiful but troubled planet.

But back to the subject of the changing/changed healthcare landscape! Whilst we negotiate how we learn to live with the pandemic, the ‘new normal’ for rheumatology health professionals is anything but pre-pandemic ‘normal.’ Teams may be back to running clinics which all but stopped or did stop for much of 2020, but they are now facing an unprecedented backlog of patients who need to be seen whilst trying to deal with referrals and follow-ups as usual! All this in an environment of rising infections again and a workforce in crisis. Have a look at the British Society for Rheumatology Report: Rheumatology Workforce: A crisis in numbers – 20211 which reported that the vast majority of teams are not at full strength, or anything like in some places which simply compounds the problem.

We see both sides as a national patient organisation – how hard the rheumatology teams are working and the relentless pressure they are under, and how many people are experiencing difficulties getting the care they need in a timely way, through calls to our helpline and contact with our community groups, Members, Volunteers and online community. We are also seeing the problems accessing GPs and GP services that many people are reporting. There are no magic solutions and even if the government were to invest a lot more money into NHS workforce training and recruitment tomorrow, the situation is not going to be resolved any time soon.

This, to my mind, highlights the critical need for people with long term conditions, like RA and JIA, to invest in learning about supported self-management and understanding their condition. In my 20+ years of experience running NRAS (as CEO for 18 years) and now in my role as National Patient Champion, together with over 40 years’ living with RA, supported self-management has become a passion and something I practise daily. I have personally seen the huge, positive, difference it has made to my own life and that of others who have embraced it. Interestingly, I have just seen a paper, albeit from the United States, which reported a relatively low rate of people (with any kind of arthritis) across the States attending self-management learning2.

The author of the article reported: “Arthritis is a common and disabling chronic condition among US adults,” Lindsey M. Duca PhD, of the CDC Epidemic Intelligence Service and the National Centre for Chronic Disease Prevention and Health Promotion, told Healio Rheumatology. “Self-management education and physical activity can reduce arthritis pain and improve overall health status and quality of life of adults with arthritis.” She added: “Health care providers play an important role in promoting self-management class attendance and physical activity by counselling arthritis patients about their benefits and referring them to evidence-based programmes.”

In a changed rheumatology healthcare landscape, I believe that it is going to be even more important that people with RA and young adults with JIA understand the importance of supported self-management, which includes education about their disease and managing the symptoms of it as well as making lifestyle changes. For people with conditions like RA/Adult JIA, an important aspect of care, often missing, is education to really understand the disease and deal effectively with the practical, physical and psychological impacts that come along with it. This extends beyond drug therapy and places emphasis on the ability to self-manage (with the right support) as an essential component of care. Comorbidities including cardiovascular disease and common mental health conditions represent important, yet often poorly addressed aspects of inflammatory arthritis despite their impact on disease outcomes.

With a hybrid system, whereby consultations are delivered both face to face and remotely by phone or video, being candid and honest about how you are, will be essential if you are going to get the best from your team. Some rheumatology teams are looking at setting up ‘Patient Initiated Follow Up’ pathways (PIFU), whereby those patients who are considered to be stable and well managed will be invited to join a PIFU pathway. Should this be offered to you, (it won’t be suitable or applicable to everyone and won’t be offered to the newly diagnosed), it will be down to you to decide when you need to be seen either face to face or remotely. The other thing we need to be aware of is that not all units are able to undertake holistic annual reviews due to lack of resource and the current pressures on teams so annual measurement of any co-morbidities (other co-existing or developing conditions) won’t automatically happen.

Patient Initiated Follow-up puts the responsibility firmly in your court when it comes to determining how well you are doing and if you believe your disease has become worse and you need a review. Therefore, understanding your disease and your medications and how to manage your pain and a mild flare become even more important if you are not being automatically followed up by the system. In talking to health professionals and people with RA recently, there seem to be some misunderstandings about self-management and what this means, and hopefully I can debunk two of these here.

1. Self-management is NOT about you managing your disease alone, by yourself!

2. It does NOT mean that you won’t continue to be seen and followed up by your rheumatology team!

Learning how to self-manage should ALWAYS come with the right help and support to enable you to self-manage well and that’s why we always refer to it as ‘supported self-management.’ You need the right support from your team, your family and friends, your work colleagues, and of course, the relevant patient organisation (like NRAS). Here’s one definition of self-management – (there are a number of slightly varying definitions out there) – which we used in the European Alliance of Associations for Rheumatology (EULAR) Taskforce of which I was Joint Convenor, that published ‘Recommendations for Self-Management Strategies in Inflammatory Arthritis’3 in 2021 that might be helpful:

“The ability of the individual to manage symptoms, treatment, lifestyle changes, and psychosocial and cultural consequences of health conditions”.

Another thing I hear quite often is that people who have had their disease for a number of years or even many years, ‘assume’ that they pretty much know all there is to know about their disease. Of course, they know how their disease affects them, and they know their own bodies, but even though I had had RA for over 20 years when I started NRAS and thought I knew quite a lot, I have learnt SO much more since then and continue to learn new stuff almost weekly. I can’t tell you how many times I have heard people who have attended our face-to-face self-management programmes say ‘well, I thought I knew about RA, but I have learnt so much and gained so much from this course’ …

Getting commissioners to commission and pay for face-to-face group self-management programmes had become almost impossible pre COVID which is why we determined to create a unique e-learning programme which we have developed over the past 2 years, and which launched on 17 September this year. It’s called SMILE-RA and is aimed at adults with RA and JIA but would also be useful for people with Psoriatic Arthritis and for nurses and allied health professionals new into rheumatology from another health area. It’s easy to use and is modular with a ‘Netflix like’ interface so you choose what you want to do. Its aim is to educate, inform and support in an engaging video- based way to help you to learn and acquire supported self-management skills and coping strategies. It’s interactive and lets you go at your own pace and share with family (if you want) so they get to understand more about your disease and what you are coping with. It’s all evidence-based and has been co-created with rheumatology health professionals and people with lived experience at every step.

Registering for and engaging with SMILE will help you to become an effective self-manager and it signposts to other NRAS and NHS resources, e.g. our peer support options (1:1 telephone and online community forum) and our Right Start and Living with RA services, so that you get access to all the many ways in which NRAS can support and assist you. www.nras.org.uk/smile

The health service is changing how it delivers care to people with long term conditions and, as people with RA and adult JIA, we need to change with it and ensure that we are making the most of all the great resources available to us to help us to manage our condition in the best way possible to maximise the quality of our day to day lives. NRAS is here to help you, as always, every step of the way.

References

1 – British Society for Rheumatology Report : Rheumatology Workforce: A crisis in numbers – 2021
https://rheumatology.org.uk/Portals/0/Documents/Policy/Reports/BSR-workforce-report-crisis-numbers.pdf

2 – Healio Rheumatology, November 29, 2021 – ‘Less than 20% of adults with arthritis attend self-management classes’ https://www.healio.com/news/rheumatology/20211124/less-than-20-of-adults-with-arthritis-attend-selfmanagement-classes

3 – EULAR Recommendations for the implementation of self-management strategies in Inflammatory Arthritis; https://nras.org.uk/resource/eular-recommendations-on-self-management-in-inflammatory-arthritis/