Why England needs an implementation plan for the UK Strategy for Rare Diseases (2017)

The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions has published a report looking at the implementation of the UK Strategy for Rare Diseases in England. The report calls on the Department of Health to take action to improve services for patients and families affected by rare conditions.

Over 300 patients and other members of the rare disease community, including family members, clinicians, patient representatives and industry, submitted evidence as part of the APPG’s inquiry into the implementation of the UK Strategy for Rare Diseases in England. If implemented, the Strategy would provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK.

Key finding: the UK Strategy for Rare Diseases is not being effectively implemented in England.

  • The departments of health in Scotland, Wales and Northern Ireland have all developed plans to improve services for rare disease patients that reflect their respective health service systems. The Department of Health in England has not coordinated an implementation plan for England.
  • Many patients in England do not have access to appropriate treatment or information about their condition.
  • Patients’ health and social care is often poorly coordinated, with many struggling to access mental health services needed to help them cope with managing their rare condition.

Key recommendation: the Department of Health should develop a comprehensive implementation plan to deliver the Strategy in England.

To download the full report, click here.

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