Arthritis and Musculoskeletal Alliance

….for people living with rare rheumatic and musculoskeletal conditions.

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.

A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases 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

Jane Dunnage, former chair of LUPUS UK, said, “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 from the BSR website, here.


Belimumab (Benlysta) finally approved for limited use on the NHS

The first new treatment for lupus in more than 50 years, Belimumab (Benlysta), has finally been approved for limited use on the NHS for certain patients living with the condition in England and Wales.

The National Institute for Health and Care Excellence (NICE) said that the drug would be made available under a managed access scheme between GlaxoSmithKline (GSK) and the National Health Service (NHS) in England. This requires the treatment to be reviewed by NICE after three years, during which time further data will be collected on its benefits to patients.

Benlysta was approved in Europe five years ago. It is the first in a new class of drugs called BLyS-specific inhibitors, which work by targeting a naturally occurring protein believed to play a role in the production of antibodies which attack and destroy the body’s own healthy tissues.

GSK will provide the medicine to the NHS at an undisclosed discount.

“We are very pleased that NICE has announced that this new treatment will be made available on the NHS for lupus patients in England and Wales who meet the necessary criteria. It has allowed access to another treatment option for those with advanced disease which has failed to respond to currently available therapies.” – Chris Maker (Director of LUPUS UK)

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