Archive of: November, 2013
The Department of Health has now published the UK Strategy for Rare Diseases in response to an EU Council Recommendation on the subject from 2009.
The SHCA was part of the Rare Diseases Stakeholders Forum which fed into the development of the Strategy, and welcomes the Strategy’s vision for a joined-up approach to services for people with rare conditions across the UK. The Alliance is pleased to note that the Strategy reflects several of the recommendations from its 2011 report, Leaving no one behind, concerning issues such as diagnosis, networks and the role of registers.
By the end of February 2014, each country of the UK will need to develop a national implementation plan. This will naturally be an important focus over the coming months, with a view to ensuring that the Strategy’s commitments can be realised in the context of different health systems.
The UK Strategy for Rare Diseases is available here
As part of the development of the five-year strategy for specialised services, NHS England and the Specialised Healthcare Alliance are inviting individuals and organisations to provide written submissions to inform the strategy’s scope. A briefing document has been prepared to help guide those interested in making a written response, which will form the basis of a scoping report to be prepared by the end of this year.
The briefing document can be found here, and written responses should be submitted no later than 13th December 2013.
As reported in July, the Alliance is delighted by NHS England’s decision to develop a strategy for specialised commissioning in the period to 2020, building on the seminal Carter Report. We are now pleased to be working with NHS England to ensure that stakeholders from all quarters have an opportunity to help inform the scope of the exercise, both through written submissions and a special event in London on 9th December.
Initial information is set out in a joint press release, which can be found here.
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