Angela introduces us to the new Charity, which builds on the best of Arthritis Care and Arthritis Research UK.
I will admit when I found out at the beginning of 2017, that the Boards of Arthritis Care and Arthritis Research UK were considering a merger, I felt the earth shift significantly beneath my feet. A natural response I suppose, when you’ve committed as many years as I have, to working for Arthritis Care Scotland, joining the charity in 2000 not long after the establishment of the Scottish Parliament. And if I’m honest, I’ve always felt proud to work for a UK charity which put its money where its mouth is and resourced an office and staff in each of the devolved nations. Our key aim has always been to empower people with arthritis, and we have, alongside other long-term condition specific charities worked to influence the various Scottish Government’s positions on free prescription charges, self-management and health and social care integration.
We also recognised that to effectively support people with arthritis and MSK in Scotland, we need to reach them where they live, in diverse communities all across Scotland. We developed some really good models of peer-support and service delivery to people of all ages, giving them tools to live well with their arthritis. Our biggest frustration has been however, that we have never had sufficient resources to scale those models up and to reach people with much needed support across the whole of Scotland. Arthritis Care has been for much of its history a member-led charity, with branches, groups and volunteers at its core, and who were key to providing support to people in the ‘here and now’ to overcome the challenges they faced in the absence of a cure.
Throughout my time with Arthritis Care I was always aware of Arthritis Research UK, without really understanding much about them as a charity. I just knew that they had a ‘different’ focus. Arthritis Research UK has been predominantly a medical research charity, and as such very focused on researchers, clinicians and the ultimate goal of finding a cure for arthritis. In terms of organisational resources they were significantly larger than Arthritis Care, currently investing £15 million in research in Scotland alone, but managed from both London and Chesterfield with no real presence ‘on the ground’ in any of the UK’s nations. Those not insignificant differences are I imagine, what justified each charity operating separately for so long.
But times are changing, and rightly so in my view. If we as third sector organisations, representing people with arthritis and MSK are serious about being competitive, retaining the value of our independence and continuing to support and influence effective delivery for our people, then we also need to echo some of the messages that governments across the UK are now bringing forth; messages many of us have campaigned for over many years. Different ways of working, collaboration, making what we do easier to access and more visible, reducing the cluttered landscape so not only people with arthritis, but also our statutory partners can understand and navigate their way to working more closely and effectively with us. People living with the condition must be central to all of our work, including the research agenda, not just because it’s a charitable thing to do, but because that is what makes us effective.
What hasn’t changed is the prevalence of arthritis and MSK conditions, nor has the lack of awareness of its impact on the people who live with the condition. Currently in Scotland an estimated 1.5 million people live with arthritis or another MSK, almost a third of the total population. 80% of those people say they experience pain every single day, and in Scotland it is estimated that the impact on productivity associated with rheumatoid arthritis alone is over £655 million each year. Yet still, the vast majority of people do not know that either charity exists, never mind the support that we can offer them. That is just not good enough.
From the 1st November 2017, our Chief Executive, Dr Liam O’Toole promised us that we were on a journey of transformation, to becoming a charity which would be bigger, better and different. Almost a year on from merging organisationally and practically, many discussions have been had with stakeholders across both charities and beyond about what we want the new charity to be. We want to be less patient and polite, more strident and demanding and we are no longer willing passively accept the impact of pain, isolation and fatigue which are associated with arthritis. We want people with arthritis to know that we will walk alongside them, whatever their age, and wherever they live, so they do not have to face the challenges alone. We want to improve services locally and support people to live well within their communities, backed up by the best evidence available. Together we will push to defy arthritis and today I become Angela Versus Arthritis. We are Scotland Versus Arthritis. All of us Versus Arthritis.