BRS outlines priorities to improve outcomes for people with rare rheumatic diseases

The British Society of Rheumatology (BSR) has outlined its priorities to help improve outcomes for people with rare rheumatic and musculoskeletal conditions.

Following on from the launch of the two-year update report for the government on implementation of the UK Strategy for Rare Diseases, which reveals significant progress in its commitment to facilitate early diagnosis and access to treatment for people with rare diseases, the BRS says that while strides have been made over the two years, more needs to be done in relation to the 20% of rare conditions that non-hereditary.

These include rare inflammatory and autoimmune diseases such as ANCA Associated Vasculitis (AAV), Systemic Lupus Erythematosus, Myositis and Scleroderma; an important subgroup of rare diseases, that the BSR says, have been overlooked by the Strategy and most of the national implementation plans.

According to the BRS, these complex medical conditions can be difficult to identify and diagnose, with many people experiencing delays of up to five years between the onset of their symptoms and diagnosis.

The society goes on to say that these delays are frustrating for the individuals, but also mean that opportunities for early intervention are missed, potentially increasing the risk of developing permanent disability and organ failure, which can be life threatening. For example, on average one in nine people diagnosed with AAV are likely to die within a year of diagnosis.

At a national workshop, hosted by the BSR in November 2015, to help raise to priority of rare rheumatic and musculoskeletal conditions and improve patient care, a number of recommendations emerged including:

• working to improve condition knowledge across all health professionals
• creating a rare rheumatic and musculoskeletal disorder alliance, building on commonalities across these conditions to foster closer collaboration and knowledge sharing
• developing a national audit for rare conditions to help measure and drive the improvement in standards of care
• improving the data picture through disease registries and adoption of specific rare disease coding
• promoting the development of regional co-ordinated networks of care for rare diseases

President-elect of the BSR and Chair of the Clinical Reference Group (CRG) for Specialised Rheumatology, Dr Peter Lanyon, comments, “The Forum’s report is an important moment for rare diseases in the UK. We now have greater clarity on what has been achieved and what needs to be done for patients up and down the country. The BSR has a key role to play in supporting this process on behalf of people living with rare rheumatic diseases, who face the challenges of delayed diagnosis, treatment and poorly co-ordinated care, yet have been largely overlooked by policymakers. We are looking to redress this imbalance and will work with partners to improve the delivery of care for these rare conditions.”

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