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Written question asked by Lord Hunt of Kings Heath (Labour) on Monday, 15 December 2014, in the House of Lords. It was due for an answer on Wednesday, 31 December 2014. It was answered by Earl Howe (Conservative) on Wednesday, 31 December 2014 on behalf of the Department of Health.

Rare Diseases

Question

To ask Her Majesty’s Government what is the process by which NHS England makes decisions on whether to support the funding of (1) National Institute for Health and Care Excellence (NICE) highly specialised technologies (HST) approved rare disease treatments, (2) non-NICE HST approved rare disease treatments, and (3) rare disease treatments that are not selected for HST evaluation.

Answer

The Rare Diseases Advisory Group (RDAG) was established in March 2014 by NHS England. It was set up to provide NHS England and the devolved administrations of Scotland, Wales and Northern Ireland with consistent advice on developing and implementing the strategy for rare diseases and highly specialised services. The RDAG will also provide advice to NHS England and the devolved administrations to enable it to respond to consultations issued by the National Institute for Health and Care Excellence (NICE) Highly Specialised Technology Programme and to provide advice to NHS England and the devolved administrations on the most appropriate services to deliver those highly specialised technologies that receive a positive technology appraisal determination from NICE.

At the three meetings held by RDAG in 2014 the group has addressed proposals for some new treatments to be considered for provision in the National Health Service. It has also considered a number of services, currently provided within the NHS, that meet the criteria of Highly Specialised Services (HSS) and should be considered as highly specialised and re-configured to be provided in expert centres. The group has also considered a number of service specifications for HSS. Recommendations have been made to the Clinical Priorities Advisory Group based on these decisions. Any recommendations agreed by NHS England will go out for a full three month consultation.

Secondary information

Type
Written question
Reference
HL3740
Session
2014-15
Subjects
Finance Medical treatments Rare diseases
Link
View this Written question on www.parliament.uk