PARLIAMENTARY WRITTEN QUESTION
Rare Diseases: Health Services (11 October 2024)

To ask the Secretary of State for Health and Social Care, if his Department will take steps with local Integrated Care Boards to help ensure that rare disease services are delivered according to the priorities set out in the Rare Disease Framework.

Asked by:
Peter Dowd (Labour)

The UK Rare Diseases Framework sets a high-level strategy to focus action across the healthcare system to address the four priorities of: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. Integrated care boards (ICBs) are responsible for commissioning some specialised healthcare services, which help treat patients with rare diseases, whereas others are commissioned centrally by NHS England. For those specialised services commissioned by ICBs, the ICBs must commission the services in line with service specifications and standards published by NHS England. NHS England remains accountable for the effective arrangement of those specialised services.

Answered by:
Andrew Gwynne (Labour)
21 October 2024