Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to his Department's policy paper entitled England Rare Diseases Action Plan 2023: main report, updated on 10 July 2023, what steps his Department is taking to end the diagnostic odyssey experienced by people with rare diseases.

Helping patients get a final diagnosis faster is one of the four priorities of the 2021 UK Rare Diseases Framework, and we have committed to several actions to address this priority. For example, in the 2023 England Rare Diseases Action Plan we committed to commissioning policy research through a National Institute for Health and Care Research open call, inviting researchers to develop an effective method for measuring the time to diagnosis for both genetic and non-genetic rare conditions, with input from the rare diseases community. This will allow us to establish a baseline time to diagnosis, understand the effects of policy interventions on length of the diagnostic odyssey and provide a basis for working with the National Health Service to identify and address challenges in delivering diagnoses faster.