NHS England, through its role in the direct commissioning of specialised services, is ideally placed to improve the care of patients who have rare diseases.
This is the Implementation Plan setting out NHS England’s delivery contribution tothe UK Strategy for Rare Diseases.
The Plan sets out NHS England’s proposed actions against all of the commitments in the Strategy for which it has a lead responsibility. In particular, the Plan aims to address the following three objectives
- Facilitating earlier diagnosis and intervention
- Improving care coordination
- Promoting research.
Of particular note are the following key actions:
The continuing progress of the 100,000 Genomes Project and the concurrent development of a genomic testing strategy that will underpin the development of a new genomic medicine services for the NHS
The development of a set of criteria that will allow NHS England to hold providers to account for the way in which they treat patients with rare diseasesvia a rare disease ‘insert’ to the standard NHS Contract
- The development of Rare Disease Collaborative Networks. These will be groups of providers who have a demonstrable research-active interest in a rare/very rare disease, with the aim of improving patient outcomes