As part of our Patient Voices podcast series, we spoke to Teresa Shakespeare-Smith and Sally Dickinson.
Teresa, a community pharmacist, openly shares her experiences living with rheumatoid arthritis. She has spearheaded the idea of patient-led events, is a member of the Ampersand Patient Voices panel and hosts our arthritis meet-ups. Sally Dickinson is the Head of Information and Support Services at the National Axial Spondyloarthritis Society (NASS). With Teresa’s invaluable perspectives both as a patient and clinician, and Sally’s insights running a membership organisation, the guests talk about the value and benefits that patients derive from being part of a community and how patient communities have adapted to the pandemic.
What is a patient community?
A patient community is a place, either in-person or on the web, where patients and their families can meet to learn about and discuss their health concerns. By bringing people together that share a lived experience of a particular condition, patient communities are incredible sources of information and support.
In October 2004, Teresa started to have joint pain with her hands and shoulders becoming swollen and stiff. In the back of her mind, Teresa thought her symptoms could be related to rheumatoid arthritis as she had seen her aunt live with the condition. She went to see the GP in November and her concerns were dismissed. She was told that her symptoms were related to post viral syndrome. Teresa’s symptoms worsened over the next few months to the point where she couldn’t even straighten her fingers. Teresa describes begging her GP to do a blood test due to her concerns and family history. On Christmas Eve, Teresa went to discuss her results with her GP. She had significantly raised rheumatoid factor. Rheumatoid factor is proteins produced by your immune system that can attack healthy tissue in your body. High levels of rheumatoid factor in the blood are most often associated with autoimmune diseases such as rheumatoid arthritis. Teresa finally saw a consultant in May 2005.
Throughout this journey, Teresa continued to work as a community pharmacist. She describes her dependence on codeine to get her through the days and allow her to work. Teresa normally wears heels to work but had to replace them with massive walking boots. After being on her feet all day, she would go home exhausted and sometimes go straight to bed. She describes telling her GP that she could not manage with the pain. She was given a steroid injection in the back which provided some temporary relief, then started on DMARDs (disease-modifying antirheumatic drugs) and eventually put on biologics in the summer of 2008. Teresa’s journey is not uncommon and she has had to learn to manage her pain. There are only a few opportunities throughout the year, during consultations, to engage with healthcare professionals.
A first-hand perspective from someone who is dealing with the same condition is a truly invaluable source for patients. Teresa describes how she didn’t want to worry or bore her family with her problems. For Teresa, her friend Kim, who had already been living with rheumatoid arthritis for ten years, was the ‘light at the end of the tunnel’. The feeling of not knowing what is going on with your body and losing control is terrifying and during a time when there were many unknowns, Teresa started to form her own small community with Kim. Later, her community grew as she joined her local National Rheumatoid Arthritis Society (NRAS) branch.
Teresa noticed that stress was a trigger for her condition, with her symptoms worsening around busier times of the year at work. As Sally notes, for most long term conditions, people may spend around 2 hours over the year with a healthcare professional. For 8758 hours, people have to be able to manage their condition on their own. With chronic inflammatory conditions such as rheumatoid arthritis, symptoms can be unstable and worsen with flares. During those moments, self management is incredibly important. At a NRAS session delivered by MIND, the mental health charity, Teresa was introduced to mindfulness. After experimenting with mindfulness apps, Teresa found that the practice helped her to calm down after a busy, stressful day. This had huge knock-on consequences on the rest of her life; she slept better and felt more energised in the mornings.
What are the benefits of patient communities?
- Share and learn: patient communities attract a diverse range of people, all at different points on their journey, sharing everything from general tips about dealing with life and their experiences to the specific side effects of biologics. Sharing with others is powerful, and empowers people with knowledge and confidence.
- Information and support: patient communities are an invaluable source of information and support. Organisations like NRAS and NASS are able to signpost patients to appropriate resources and relevant practical support.
- Access to experts: patient communities deeply understand the needs of their members and are very well-connected to experts. As a result, they can organise sessions with experts such as occupational therapists, tai chi instructors and hospital consultants and provide their members with access to more holistic and personalised care.
Spotlight on AS (Axial Spondyloarthritis)
What is axial spondyloarthritis?
Axial spondyloarthritis, also known as axSpA or axial SpA, is a painful, progressive form of inflammatory arthritis that mainly affects the joints of the spine. With the main symptom being back pain, it can also affect other joints in the body as well as tendons and ligaments. It is a condition that affects young people with symptoms starting in late teens to early twenties. The average age of onset is 24 year olds. Unfortunately, even before the pandemic, the average delay to diagnosis from when symptoms started is 8.5 years. By this point, irreversible damage to the spine may have occurred and is a long time for someone to suffer with pain.
What is the main difference between rheumatoid arthritis and axial spondyloarthritis?
Rheumatoid arthritis tends to affect the peripheral joints, the small joints of the hands and feet , sparing the spine. Axial spondyloarthritis tends to mainly affect the spine with little effect on the peripheral joints. Rheumatoid arthritis tends to be more common in females and axial spondyloarthritis tends to be more common in males. The disease process is also different between the two conditions.
NASS and their community
NASS is the only charity in the UK dedicated to transforming axial SpA care in the UK, providing specialist support, advice and information. With more than 200,000 people in the UK having axial SpA, NASS wants to ensure that every person receives timely diagnosis, effective treatment and care and is empowered to take control of their health.
It’s incredibly important that people are able to talk with others who are going through or have been through similar problems. Like National Rheumatoid Arthritis Society (NRAS), NASS is a membership organisation with branches across the country providing expert support. The local branches provide a place for people with axial SpA to connect, share and learn. With thousands of like-minded people who know what it’s like to live with the condition, members do not have to explain themselves or their condition, describes Sally. The branches also offer access to specialist services such as hydrotherapy and physiotherapy sessions.
How has NASS remained effective during the coronavirus pandemic?
For over 40 years, NASS has been providing support for people living with axial SpA. Their members remain at the forefront of all of their work. NASS is always willing to try new approaches and adapt based on feedback from their members. Sally describes how it is critical to ask ‘What do our members need and want?’. When supporting people living with axial SpA, a one-size-fits all approach does not work. The coronavirus pandemic completely halted the essential face-to-face work being carried out by the local branches. With people not being able to meet in person, branches had to adapt quickly and run their meetings virtually. Sally talks about how NASS have been able to run weekly Facebook live sessions such as virtual pilates and Q&A sessions for people on how to manage pain and how their members have responded incredibly well with the changes. Harnessing digital platforms such as Zoom and Facebook provides members with an additional touch point. People have been forced to learn digital skills, and Sally comments on how some members in their 70s and 80s have embraced new digital way of life. However, we must be careful as not everyone has the ability to access and use online services. To ensure as many people as possible are supported, a hybrid approach of using both virtual environments and face-to-face meetings is being adopted at NASS.
Who should be responsible for building these patient communities?
In an ideal world, healthcare organisations like the NHS would be responsible for building, supporting and maintaining patient communities. Teresa describes the need for a patient engagement team, within departments, who can signpost individuals to relevant resources and support, promoting greater levels of self-care. Patients are usually referred to a consultant who would carry out investigations, diagnose and start them on the most appropriate treatment. With many rheumatoid arthritis nurse specialists being able to prescribe, they are able to support patients with their management plans. As part of their management plan, patients should be referred to allied healthcare professionals such as dietitians, physiotherapists and therapists depending on their individual needs. Unfortunately, due to enormous time constraints and pressures, healthcare professionals may not be aware of or spot the challenges faced by individuals. There is a wealth of information available from patient organisations like NRAS. Someone needs to make people aware of the resources and support that are available to them. For example, if a patient mentions that they are struggling at work, they should be referred to occupational therapy for additional support as part of their therapy. Patient groups such as NRAS and NASS and organisations like Ampersand who are supporting with digital therapies, can help to alleviate pressures on the healthcare system, ensuring patients receive more patient-centred, individual care.
Get in touch with Teresa Shakespeare-Smith via the Ampersand patient panel and Hertfordshire branch of NRAS; Sally Dickinson via the NASS website.