Firstly, it’s about the strength gained from having robust data on patient numbers and their outcomes. Most rare disease areas such as ours strive for this, yet getting a reliable national or local picture of the impact of the disease remains difficult. This is partly due to the small number of patients involved, but mainly as a result of low priority given to these conditions over many years and the lack of resources that has come with that. Good data can therefore be a real driver for change in care and services for people living with these diseases.
Secondly, in the more traditional sense of the phrase, it’s about the strength derived from different organisations working together towards a common purpose. Bringing together many disparate voices with different aims into a single entity that works together to improve the lives of patients. Having a powerful, single voice on key issues helps raise awareness and opens doors to decision makers in Government and elsewhere. Not to mention the strength to be gained in terms of pooled expertise and resources.
This is one of the many reasons why SRUK became a member of National Voices, but also why we have recently co-created our own collaborative in the form of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). The Alliance is made up of four founding partner organisations, the British Society for Rheumatology (BSR), Lupus UK, Vasculitis UK and SRUK, all of whom have worked tirelessly over many years to help improve the lives of patients with these rare autoimmune diseases.
The Alliance emerged from a national workshop hosted by the BSR last year, which sought to raise awareness of our group of diseases and to start making connections across the wider community and into Government, in order to bring about better outcomes for all our patients. The workshop report A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases set out a number of recommendations, including building a rare rheumatic disease partnership and helping to improve knowledge about this disease group by establishing a national audit.
The launch of this initiative is timely given the work taking place as part of the UK Strategy for Rare Diseases, but also due to the lack of focus of the Strategy on the 20% of rare diseases that are largely non-hereditary in nature, such as rare autoimmune rheumatic disorders.
The next phase will see work to deliver the report’s recommendations, and the Alliance will seek partners in order to do so. The road ahead won’t be easy, but it will undoubtedly be an easier one to negotiate as a collective, rather than individual organisations working in parallel with different aims, however well-meaning these may be. The Alliance also represents an example of how patient charities can work hand-in-hand with professional bodies to put together a powerful and well-rounded case, which decision makers will find difficult to ignore.
Perhaps the most important thing I have learned from the process so far, is that it’s a question of setting aside individual interests to achieve a shared purpose, building upon the commonalities and what links us, rather than what divides. To paraphrase Scottish-American philanthropist, Andrew Carnegie, “working together towards a common vision is the fuel that allows ordinary people to attain extraordinary results.” I believe this holds true now as much as it ever did.