Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to monitor the implementation of the (a) UK Rare Diseases Framework and (b) England’s Rare Disease Action Plans.

The UK Rare Diseases Framework Board provides high level oversight and coordination of rare disease policy and action plans across the four nations. National implementation and delivery groups continue to meet regularly to report on and monitor the implementation of action plans.  England’s Action Plan contains a concise set of deliverables, each with an owner, key milestones, and metrics. Progress will be reported in annual updates of England’s action plan and continual community engagement.

The Department is currently working with National Institute of Health and Care Research to commission policy research which will develop metrics and methodology to measure improvement of the lives of people living with rare diseases in the United Kingdom across the four priority areas of the UK Rare Diseases Framework. These metrics will be applied to assess the outcomes of the Framework as delivered through England’s action plans.