Archive of: May, 2012

• Future of AGNSS

  May 2012

  The Advisory Group for National Specialised Services has announced a moratorium on its consideration of new highly specialised services, products and technologies, pending the NHS Commissioning Board taking up its statutory responsibilities in April 2013. Its future thereafter seems uncertain. The Alliance is urging AGNSS’s retention, as well as continued Ministerial involvement in what can often be strategically important decisions with ramifications for all four home countries.

  • The Alliance’s briefing on the issue is here

• UK Plan for Rare Diseases Consultation

  May 2012

  On 29th February, the Department of Health opened a consultation on a UK-wide plan for rare diseases. While the Alliance welcomes the development of a UK rare disease plan as a means of improving care for people with less-common conditions, the proposals currently lack vision and coherence. In particular, the Alliance wishes to see clear accountability providing equitable access to specialised services and treatments wherever you live, allied with a strong focus on outcomes. To provide the necessary leadership in implementing the plan, the Alliance urges the appointment of a national clinical director for specialised services in each of the home countries.

  The consultation closes on 25th May, and is available to read here

  • The Alliance’s consultation response is here