The British Society for Rheumatology (BSR) has launched a report setting out a programme of work to enhance care for people with rare rheumatic and musculoskeletal conditions.
The report builds on a national workshop hosted by the BSR in November 2015, which brought together a range of stakeholders to help raise the priority of rare rheumatic and musculoskeletal conditions and improve patient care. A key theme to emerge from the workshop was the need for greater cross-sector collaboration and this report sets out a number of recommendations, including the need to:
• work to improve condition knowledge across all health professionals
• create a rare rheumatic and musculoskeletal partnership, building on commonalities across these conditions to foster closer collaboration and knowledge sharing
• develop national audits for rare conditions to help measure and drive improvement in standards of care
• improve the data available to the NHS about these conditions through disease registries and adoption of specific rare disease coding
• promote the development of regional coordinated networks of care for rare diseases.
The report comes at an important time for rare diseases. Two years on from the launch of the UK Rare Disease Strategy, much of the focus has been on Genomics and the 80% of all rare diseases that have a genetic origin. However, the BSR believes that greater priority should be given to the non-hereditary rare conditions, of which the rare inflammatory and autoimmune diseases are a very important component. These related conditions include ANCA Associated Vasculitis (AAV), Lupus and Scleroderma. People living with these conditions report delays in diagnosing and treating their condition of up to seven years. During this time their health may deteriorate with risk of permanent disability, organ failure, or even death. For example, one in six people diagnosed with AAV are likely to die within a year of diagnosis and life expectancy for people with Lupus UK is 20 years shorter than the UK average.
A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases, offers a first step in delivering a co-ordinated response to the needs of people living with these conditions.
Dr Peter Lanyon, BSR President and Chair of the NHS England Clinical Reference Group for Specialised Rheumatology, said: “This report sets out a vision of how the stakeholders within our community can work together to improve the lives of people with rare rheumatic and musculoskeletal disorders. These have largely gone under the radar of policymakers and those who commission and deliver health services. We hope to redress that through the collaborative approach outlined in this report, to ultimately help deliver better care and outcomes.”
Jane Dunnage, former chair of Lupus UK, added, “people with rare rheumatic and musculoskeletal conditions, such as Lupus, will be heartened by this report. It helps shine a light on this overlooked group of diseases that have such a significant impact on people’s lives. We urge our partner organisations to support us in raising their profile and driving improvements to services for people with these conditions.”
The report is available to download now at http://www.rheumatology.org.uk/includes/documents/cm_docs/2016/b/bsr_rare_conditions_report.pdf