Rare Diseases

(asked on 9th December 2014) - View Source

Question to the Department of Health and Social Care:

To ask Her Majesty’s Government what is the process by which NHS England makes decisions on whether to support the funding of treatments for rare diseases.


Answered by
Earl Howe Portrait
Earl Howe
Deputy Leader of the House of Lords
This question was answered on 22nd December 2014

NHS England specialised commissioning is supported by devolved clinical leadership. Specialised services are grouped into five programmes of care:

- Internal Medicine;

- Cancer and Blood;

- Mental Health;

- Trauma; and

- Women and Children.

Within the programmes of care, 75 Clinical Reference Groups (CRGs) are responsible for preparing national specialised service-level strategy and developing specialised service contract products such as specifications and policies.

In addition, the Specialised Commissioning Medicines Optimisation CRG works across all 75 service-specific CRGs.

The Clinical Priorities Advisory Group (CPAG) advises the Specialised Commissioning Committee on commissioning of new treatments for rare diseases in England. CPAG’s membership includes clinicians, patient representatives and commissioners of health services. Recommendations are made by following the principles and criteria of a decision-making framework.

The Specialised Commissioning Committee advises the NHS England Board on development and implementation of strategy for specialised commissioning, agreeing specialised commissioning priorities and work programmes, and receiving assurance that these are delivered.

The NHS England Board recommendations from the Specialised Commissioning Committee and deliberates accordingly.

A copy of the CPAG Decision-Making Framework is attached.

Reticulating Splines