Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps his Department is taking to ensure that patients do not face delays in obtaining access to treatments for rare and ultra-rare diseases.

The UK Strategy for Rare Diseases, published in November 2013, contains 51 high level commitments which comprise a long term strategic vision for improving the lives of all those with rare diseases and conditions. The UK Strategy includes commitments to deliver effective interventions, treatments and support to patients quickly, equitably and sustainably. All four countries of the United Kingdom have agreed to implement the strategy by 2020.

We are committed to ensuring that patients with rare and ultra-rare diseases in England are able to access effective treatments.

This is why we launched the Accelerated Access Review to make recommendations to Government on speeding up access for National Health Service patients to innovative and cost effective new medicines, diagnostics and medical technologies. The Review was published on 24 October 2016 and further information is available at:

www.gov.uk/government/news/getting-patients-quicker-access-to-innovative-healthcare

The Government will respond to the review in due course.

The National Institute for Health and Care Excellence has recommended a number of treatments for rare and ultra-rare diseases through its Highly Specialised Technologies evaluation.

In addition, NHS England has made a number of treatments available for such conditions through its specialised commissioning procedure.