The importance of the patient perspective in Rheumatoid Arthritis: Ailsa Bosworth

Professor Peter Taylor, Norman Collisson Chair of Musculoskeletal Sciences at the University of Oxford, and Director of Clinical Sciences at Arthritis Research UK, and Ailsa Bosworth MBE, Founder of the UK’s National Rheumatoid Arthritis Society (NRAS), discuss the burden of living with Rheumatoid Arthritis (RA) throughout COVID-19, as well as the priorities most important to both patients and physicians.

Professor Peter Taylor shared his ethos when working with patients on deciding their care:

“There’s a quote I love from a physician from over a hundred years ago: “The good physician treats the disease, but the great physician treats the patient who has the disease” – and I believe we can only do that when we work together to understand what matters to people living with RA. As physicians, it’s very important that we treat to target, to try to optimally suppress the inflammatory component of RA, but we need to look beyond that to seek from the individual patient what it is that matters to them, and then do our best to address it.”

Ailsa Bosworth also shared her experience of working with her physician to manage her disease, and the treatment goals most important to her.

“I am Ailsa Bosworth and I am a national patient champion for the National Rheumatoid Arthritis Society, after founding the organisation in 2001. I was diagnosed with sero-negative RA over forty years ago and have subsequently undergone multiple surgeries and experienced many different treatments, and have developed uveitis as a result of the disease.

My experience of working with healthcare teams to manage my RA has varied over the years. I’ve been with my current consultant for many years and he knows me well – but I feel that, however understanding or sympathetic health professionals are, they don’t truly understand the reality of what it’s like to live with the disease and its consequences, as well as the burden of treatment, unless they have it themselves. I can recall two or three physicians telling me that even though they have treated the disease for over twenty years, they only realised the reality of the illness and the scale of compromise undertaken by patients when someone close to them personally received a diagnosis.

I remember reading a letter from a consultant to my GP which described me as managing very well; in reality, I was in a lot of pain, struggling to sleep and unsure whether my current treatment was working. Many physicians understand certain clinical aspects of the disease very well due to seeing patients day-in, day-out – but the reality is still hard to understand.

This is why it’s hugely important to me to be actively involved with setting treatment targets, and overall treatment decisions. I am a passionate believer in and advocate for self-management and being as knowledgeable as possible about your own disease. My current physician embraces the fact that he is working with a knowledgeable, expert patient and I am central to my own care decisions. Over the years there have been many times where I’ve been receiving treatments that I felt weren’t working, and that experience has taught me to keep a very open dialogue with my healthcare team.

In terms of goals for my treatment, I want to minimise the amount of pain that I experience and I want to retain my mobility, functions and independence for as long as possible. Treatment efficacy is really important – if I can have control of pain and fatigue, my quality of life is hugely improved. The toll on my mental and emotional wellbeing is significantly affected when I’ve been experiencing high pain levels for a consistently long period of time.

I love my life and I love what I do. Despite having to make changes as a result of RA, I am still able to work, and enjoy live music and theatre. I don’t want to stop working and I hope I can continue for as long as possible, encouraging people living with RA to seek the best care and support for them.”

We thank Professor Peter Taylor for his perspective, and Ailsa Bosworth for sharing her story with us and the reality of living with RA for her and for many of the people Ailsa has worked with through NRAS. Galapagos believes that it is imperative that physicians and patients work together to understand the reality of the disease and choose the most suitable care in partnership, so that the best outcomes can be reached.

This article was developed and written by Galapagos, based on conversation between Professor Peter Taylor & Ailsa Bosworth – view the highlights here: