"Our ambitions and actions need to be continually sourced in lived experience"
Early in the lockdown I had an email conversation with a colleague about the way that Versus Arthritis was responding to the pandemic. In one of her replies, she said, “This strange state we all find ourselves in is actually a reality every day for some people, and for some it can become their reality overnight when hit profoundly by stroke, debilitating illness or injury and lost independence, lest we forget that for us it will end. This is a time for us to glimpse their lives and appreciate a new way that we can approach our thinking.”
Her words are both a cautionary note against too much self-congratulation of how our organisations are adapting to the challenges of the pandemic, and a reminder of our core values in the third sector – people are at the centre of everything we do. And, for our people – those living with arthritis and other musculoskeletal conditions – pain is at the centre of their lives.
When we ask people with arthritis what matters most to them, they tell us ‘pain colours everything’. The statistics tell the same story:
- three quarters of all chronic pain is musculoskeletal in origin
- 4 out of 5 people with arthritis experience pain most days
- 4 out of 5 peopl with arthritis say reducing pain and symptoms could have a big impact on their quality of life.
- Pain is the main thing that impacts on quality of life.
One of the changes in my own role during lockdown has been to become a moderator of our online forum where I’ve had regular insight into the experiences of people living with musculoskeletal pain. Browsing the forum the other day, I found threads titled: ‘pain reduction’; ‘pain management’; ‘pain from the moment I wake up’; ‘pain after hip replacement’; ‘pain, pain and more pain’; ‘pain getting me down’; ‘more pain since lockdown’; ‘can’t sleep because of pain’; ‘young and in pain’. The words, “horrendous” and “constant” feature regularly. But, more hopefully, the response from members of the online community is “you are not alone”.
To connect with this level of need – not only to ensure that people are ‘not alone’ but are recognised and supported – our ambitions and actions need to be continually sourced in lived experience. Organisations like Versus Arthritis, defined as ‘major charities’, are sometimes assumed to be too big to remain connected. Our work through COVID-19 and the lockdown helps to illustrate otherwise.
- Our Helpline queries increased by 80% over the last few months – we are a vital lifeline
- We developed and launched the COVA-chatbot providing online information on staying active and mentally healthy during the pandemic
- We have offered live-streaming Tai Chi, which helps people with arthritis/MSK pain to self-manage through activity
- We offer telephone support including welfare checks and soft self-management skills and are currently exploring a ‘telephone befriending service’ to tackle isolation faced by those in pain
- Over the past few months, we have continually surveyed people with arthritis to understand their experiences and needs and this has helped us adapt our own services and inform government policy
- We have supported young people with MSK pain, including launching a new ‘Arthritis Tracker’ for teens and young adults with arthritis to help manage their symptoms, talk to health and care providers and get support.
- And we are launching our Pain, People and Places project to more fully engage with people living with MSK pain in their communities
As we move through the phases of (un)lockdown, our focus will continue to be on pain and that its impact no longer limits the lives of people with arthritis.
Versus Arthritis online forum: https://community.versusarthritis.org/ (this link will take you away from our website)